Author Archives: rhodesfiona
Flying Above the Grey Clouds
I recall a Buddhist monk telling me, “The clear bright blue sky is always there just above the grey tormenting clouds…even when the clouds are dark.” He told me about a time he was flying out of Vancouver. It was a miserable day…cold, raining, a dark and ominous sky. As the airplane made the climb through the air he looked down on the grey world which was gradually getting smaller. The plane then entered dense clouds causing sudden extreme turbulence, visibility became poor, making one feel scared. Then the plane suddenly emerged from the thick cloud into a clear expansive bright sky. It was radiant. The air was smooth. He began to feel more relaxed and at ease. He realized that his perspective of the sky was limited by the dark grey clouds and now as he flew above the clouds it became clear that the sun had been there all along and had been waiting to greet him.
A Journey through Northern Ireland
Mindful Paths in Ireland.
I feel very fortunate to have walked these paths. Each path a different experience. Some paths smooth, easy, accommodating. Other ones rough, steep, narrow. This is the challenge. To keep going physically and emotionally no matter what arises. Or to give up. Turn back. Defeated. Paths run close to the cliff’s edge allowing a peek at the beauty down below. Virgin grass, pristine flowers, attractive palette of greens, purples, and pinks, all cascading down to meet the sea, all safely out of reach, free of any human touch. There is a magnetism to go right to the edge. My right foot there. A lure to join their safe painless world. A wave of fear crescendoed. Quickly pull away. Rooting an urgent transfer of weight down into my left foot.
A sweet fragrance wafts around me. Dainty butterflies. Chorus of birds. Clap of the sea. My shoes upon the gritty path, scraping, crunching. My breath gradually synchronizing with the sound and pace of my footsteps. The rhythm of matching step to breath centres my mind. Inhale for three steps, exhale for four steps. An arrival of lightness and energy. This breathing technique reminded me of my walking meditation experience at a mindfulness meditation course in Dunderry, Co.Meath. I now realise the importance, the teachings; how it has helped me to get to where I am today. It was quite bizarre how I ended up there. My housesit was ending and my next one didn’t start for 10 days later. I was anxious being in this position. No other housesits had become available. Didn’t know where to go. Money was tight. While searching online for a reasonable place to stay I came across a mindfulness meditation 3 day retreat. Located about two hours away and the course dates would cover me for the first two nights. I felt a little unsure but strongly seduced by the very reasonable cost including all meals. I phoned. The course had been full for months but a cancellation had just been made at the last minute. I was in. Turned out the location was the Shamanic centre for Ireland, situated close to Newgrange, a 5,200 year old passage tomb. As I drove up the long lane there was real feel of mystery, rituals, folklore. It was not hard to imagine ancient druid and pagan ceremonies happening in the clearings amongst the old gnarly trees.
Now here I was with 29 strangers of various ages and backgrounds in this 200 year old Georgian house surrounded by acres of land. Upon entering the house you stepped into this grand room with a roaring fire, beckoning couches and well-loved enormous armchairs. An impressive rectangular oak table sat low in the middle supporting wool-socked feet, mugs of tea, and books. It was a very warm calm environment. Sharing a room with two other women we quickly became friends for the weekend as we laughed and cried, sharing our stories from the security of our beds. Each person at the retreat was there with their own story, their own crisis. Some people spoke about their feelings, insecurities, past traumas in their lives. Such a deep poring of emotion while the rest of us were completely silent holding a supported space for them. Our teacher, Mary O’Callaghan, led us through mindful meditations. Lying on our mats the idea was to remain open to whatever is going on inside you. Release expectations. Doing an outdoors walking meditation as a group was a profound difficult experience. It sounded easy. How hard could a slow mindful walk be? The idea was to place your attention on your feet, try to sense each foot at the moment it touches the ground and when it leaves the ground. Do they roll from heel to toe, toe to heel, or flat ? Be aware of all the different sensations in your feet, not just a contact in the soles of your feet but the contact between the toes, the feeling of the inside of your shoes, the fabric of your socks, and let your feet be as relaxed as you can. Become aware of your ankles. Notice the qualities of the sensations in those joints – as your foot is on the ground, as your foot travels through the air. I felt slightly frantic trying to tap into all of this. So many things going on. A jolt that all of this time I had been walking on automatic pilot mode. Walking but really not knowing I was walking. I couldn’t seem to slow my walk down like others were doing. I kept getting too far ahead of the rest of the group. Why couldn’t I be like them? There they were, heads bowed, hands clasped, in the zone, radiating peace in their slow short steps. Trying to look the part, just wanting to get this over with, I attempted to copy them. Bowing my head, clasping my hands like a monk and with deep concentration managed to shorten and slow down my steps. My upper torso frustratingly remained perched forward, slightly ahead of my feet. It was the strangest thing that I couldn’t seem to rein it back, to line up over my feet. Maybe a subconscious pressure to get somewhere in a hurry. There is an internal struggle with my balance. More noticeable in this slow walk. I wonder if this is evident from the outside? A strong sensation of tipping to the right. The right side of my body feels jaggedly open like it is reaching out to find the rest of it, a need to make it whole, find the edge. An epiphany. Jason was my right. I always tried to be on Jason’s left so that he could see me. He was blind on his right side and deaf on his left side. It was usually more important that he could see me than to hear me. I could always raise my voice. In the truck where we spent a lot of time Jason was always on my right side sitting in the passenger seat. This is why my body feels like it is searching for its right half. After a few more serious wobbles the teacher came over to me. I felt embarrassed. I had hoped that nobody had noticed. She quietly spoke words which made all the difference- “Stop trying to get somewhere.” “At each step you are already there.” “You are home.” The effect was instant. Sense of hurry disappeared. I was totally present with each step. Amazing clarity. Not thinking about the previous step or the next step. Just experiencing the now. In that present moment I felt ease. All of my worries, sadness, fear, fell away for that moment. It was a glimpse at what was possible.
Another Buddhist Temple.
A lovely sunny April afternoon in British suburbia. A motorcycle backfires interrupting the sounds of children playing. The drone of lawnmowers constant. One stops, another one fires up. The monetary lapse in between reveals the sound of a hoover wafting out of next door’s window. Sun-starved pasty white arms catch my eye as the man of the house soaps down his car. His little boy squealing with delight running under the hose spray. I was not used to hearing and seeing so many people busying about their day in much the same way. What is remarkable is that at the very end of this active street is a place of quiet. Taking a walk the other day checking out my surroundings I came face to face with a street sign, ‘Buddhist Temple’, pointing straight ahead. I had no idea that I was going to be housesitting once again so close to a Buddhist Centre. First France and now England. Unbelievable. It has been very strange how Buddhism seems to be following me around, popping up at my places of housesitting…wether a temple or monks strolling by in front of me and most often- ornamental Buddhas strategically placed in the gardens or inside of the various homes. There seems to be a pattern forming. At the homes that have a Buddhist influence there is a healing, sometimes a profound experience that helps me to navigate through the grief and into this new life of mine. Crossing the road to check out this newest Buddhist encounter, the temple, I hear a voice. Two monks with huge smiles were coming towards me. After a friendly greeting they told me about their upcoming celebration on Sunday called Songkran – the Thai New Year. They appeared very excited, ” Why don’t you come tomorrow? Celebrate our New Year with us. This is our first Songkran here at our new temple. It starts with a meditation at 9am.” They seemed so eager to hear me say yes, so feeling honoured, I graciously accepted their invitation.
Entering the building, adding my shoes to the many neatly paired shoes, I stepped through the door into a magnificent room. It spoke of wealth, not what I was expecting, nothing like the Buddhist centre in rural France. The sprawling highly polished floor space was covered with rows and rows of royal blue mats; a cushion and a neatly folded white cloth carefully placed beside each. At the front of the room was an enormous gold Buddha. Beautiful flowers arranged around the altar with a sign, ‘ MONKS ONLY ‘. This gave me an inner chuckle. Standing there trying to take it all in I began to notice stares of curiousity. I became aware how I must stick out: pale, freckled, red hair amongst the rest – darker skinned black-haired. I began feeling uneasy, out of place, wondering if I should leave. A tall saffron robed monk suddenly appeared to my right. Amazing how this happened as I didn’t see him in any of my visual fields. He was just there. What a comforting reassuring feeling it was as he smiled and softly said, ” Welcome.” I noticed his thick socks on his feet and thought that is how he snuck up on me. He asked me if this was my first time here. “Yes”, I nodded smiling back at him. He asked me about my home. He looked very happy as I told him that I was from Canada and had arrived to Knaphill to housesit. He seemed such a kind gentle man. The monk explained that this was a very important day. “It is our day to honour relatives that have died and we send prayers to them.” My heart leapt and raced. Oh no! I thought it was a New Years do. The monk said “Come”, as he gestured with an open arm, leading me over to several tables laden with framed photos of relatives. They were mostly parents that had died. He gently picked up the framed photographs of his father, one when he was young, the other taken just before he had died. Holding them he gently spoke to me about his father and how his father had not wanted his son to be a monk. He reached over to a pile of forms. Passing one to me, all in Thai writing, he pointed to a line saying this is where you write your dead relative’s name and this is where you write your name. Well that was it, I was done…tears started streaming and I heard my shaky voice, “Oh sorry,” as I rummaged through my pockets for tissues, “but my son died. That is how I ended up here.” He just looked at me, didn’t say anything. I don’t think he was expecting that. Actually neither was I. He continued to just look at me; no words. People were now coming over to him lowering themselves, bowing to him, some on their knees, hands in prayer position. He said to me, “Fill this form out and I will take it to the altar for you where blessings will be made.” He passed me a pen. He waited. I wrote Fiona on the line for the living and Jason (son) and Conor (brother) on the lines for deceased. My heart hurt. I heard Jason’s voice, ‘You can do it Mum.’ Jason would have thought that was really cool having monks saying prayers and blessings for him. People were taking their forms up to the altar. I felt very privileged having this monk delivering mine. I sat on a mat. My neighbour showed me to how to place the white cloth over my knees. Lovely smiles and welcomes around me. Prayers and meditation began. Such an amazing feeling in this room with all of these people. I soon caught on to the bowing three times to the Buddha and monks. The bowing done in between prayers. The monks ( all 4 of them) began to chant. It was so beautiful. Although I didn’t have a clue what was being said I just let it wash over me. So calming, filling my heart. I recalled how after Jason died the only thing I could listen to was a CD of Gregorian chants by a group of Cistercian monks. I had forgotten all about that until this moment and how weird that here I was two years later in front of these 4 chanting Buddhist monks. I realized how far I had come and really that is all that matters despite what others say. The very fact that I am up off my bedroom floor and now sitting here is powerful. No idea that six months further on from this Buddhist temple I would find myself sitting in an Irish benedictine monastery, the Glenstal Abbey, looking onto 30 or more monks singing the evening vespers in Latin followed by the mystical sound of the Gregorian chant. No idea at the time of accepting a housesit in Limerick that this was only 20 mins away. Wether chance or design?
An announcement was made to say that offerings to the monks would now be done outside. I must have had a puzzled look across my face as a Thai woman nestled right up beside me, kneeled down and whispered in my ear, “Do you have your offering?”, her eyes motioning mine over to the rows of red and white gift bags at the side of the room. I had noticed the bags earlier and I thought they must be take home gifts for certain people. She explained that for a donation of £10 I could have a gift bag which held Thai food items. I handed over the money thinking the money was my donation(offering) as I peeked inside the bag oohing and aahing. Jars and packages of Thai goodies for cooking. I was excited thinking I can take these over to France for my friend Lucie, a gourmet cook. I was lifting the bag up and down trying to guess the weight thinking of my luggage allowance when I noticed a few of them looking at me quite strangely. I said, “Oh, I am seeing how heavy the bag is to take this on the airplane.” With horrified faces they tried several times to make me understand this was the offering to the monks..there are 8 items in the bag – 4 monks- you give each monk 2 items. OMG I thought I had bought these. They guided me outside like a child to show me what to do, all the while excitedly chattering away in Thai amongst themselves. Ha how I wished I understood Thai.
The four monks were sitting on their chairs, a large bowl on their lap. A long line of people on either side of them. I found a spot, squeezed in and sat down on the grass clutching my purchased bag of offerings. As each monk approached we were to place two items in their bowl. Once their bowl was full which was very quickly they would empty them into a large hamper. As ‘my’ monk came close to me I reached out to put a nice box of teas and a lovely looking sauce into his bowl. I felt my arm being pulled back. “No! You must give to the senior monk first, then you may give to him (my monk) .” This was the action and voice of the girl in the pink shirt sitting beside me. She was very sweet and filled me in play by play with what was happening. She proceeded to tell me about her Mum and her brother who had died and how previously she had always flown over to Thailand for Songkran to honour them but this year she had made the 3 hour drive to come here; she was glad she did. She showed me pictures of her Mum and brother on her iPhone and showed me a picture of her lighting candles in the temple in Thailand. It was so special that she shared this with me and I told her that. She was curious about me, how did I arrive here? Next thing I am telling her about Jason and how I had left my home in September and am still away. She was so compassionate and gently rubbed my back. I will never forget that exchange. After the monks had collected all of their goods it was announced it was now time to sample the many prepared Thai dishes that a group of eccentric Thai women had prepared. It was such a lovely warm spring day, people sitting on the grass, everyone enjoying the food and one another’s company. Some of the women started dancing which was entertaining. A striking Thai woman with a red headdress was doing the traditional Thai dance and it was mesmerizing to watch her. Then….the bubble burst… she spoke and out came this rough cockney accent, it didn’t fit at all and it took me a few minutes to convince my brain that the voice and the body belonged to each other. Funny really.
I was standing watching young and old building sandcastles beautifully decorated with flowers when I saw the monk (my monk) coming towards me smiling asking me if I was enjoying everything. I told him how wonderful this was and to be here. Not sure how I got to asking this but I asked him how long he had been a monk. He told me that this was his second time being a monk. First time was only for a year in Thailand. Before that, he was a scientist with a degree in Chemistry. He told me how much he loved university, doing the experiments, mixing things, but once he got out into the real world with a job, working, he quickly became bored. He was not fulfilled, something was missing. This is when he joined the monkhood the first time. He is 3rd generation Thai but his family is from a Chinese background which I thought I could see in his facial features. He told me how his parents were very unhappy about their son becoming a monk, they wanted him to be able to have nice things and have a life of opportunities. Subsequently he left the monkhood after a year. This made his parents happy. Now that he was back in the normal stream of life again he thought what will I do? I know, I will be a businessman and that’s what he did and owned his own business but once again this did not fulfill him. Twelve years ago after his father had died he was ordained as a monk for the second time. He said, “For me life is like a coin,” while demonstrating with his hands, “one side is normal life, working life, and I have lived this life. The other side is my life now: my students, the temple, meditation.” He started laughing, “Of course I can’t dress in a sleeveless robe like I wore in Thailand”, as he tugged at his jersey worn under his robe.
It was an amazing experiencing hearing this. I felt very privileged. It was like I was talking with a friend. He then went on to tell me that he came to England to pass on the Buddhist teachings. How East is very different to West. In Thailand, people in villages have school, work, the temple and this is what makes up their community- all living together. When these people immigrate to the UK they have an extremely difficult time adjusting. They find their new British neighbours closed, keeping to themselves, maybe just say hello or goodbye. The monk feels that he must teach the younger people that have been raised here- to teach them the Thai traditions and customs, the language, meditation, Buddhist values. There is a large Thai community in the UK and this temple in Knaphill is now the headquarters. It was previously in London but is now too small with no parking and the noisy surroundings were not conducive to the practice of meditation… I can only imagine!! I was beginning to sense people looking over at me, getting a felling that I had been taking up too much of the monk’s time. One of the temple organisers, the one who was always announcing something, came over to me with his fancy microphone held down by his side, “Are you enjoying yourself?” upon which my friend the monk left. He put the microphone at my mouth as I said, “Yes I am thank you.” I could hear my voice echoing around the grounds. I was live! Then asking if this was my first time here and where was I from, I answered him..still being broadcast..and when he heard Canada he shrieked, “WOW! This lady is from Canada..all the way from Canada. WOW !” and then he was off. I looked around and my monk was gone. I decided that I would head home now…it was close to 2pm.
My Volunteering Experience on Lesvos
Some of the shifts were gruelling…particularly the overnight ones at the Moria refugee camp. It was to be a long night. The shift starting at 11pm, over at 7 am, along with an added 2 hour travelling time. The unknown of what lay ahead over the next 12 hours created a heightened nervous buzz within me. How many boats would arrive? How many people would arrive to us by bus? What kind of state would they be in? Would there be enough beds? Where would they be fleeing from? Instructed never to put Iraqis with Iranians. Things I had never thought about before. Last night 600 people had arrived, busload after busload. I had no experience how to do this but there was no time to be trained, we just got on with it. Learning as we went along.
There were three shifts that covered a 24 hour period each day of the week: 7am – 3pm, 3pm-11pm, 11pm- 7am. There would be a work schedule posted each week listing where I had to be and what time to be there. There were many shifts to be covered daily at the various locations: the main refugee camp in Moria, the IRC ( International Rescue Committee) camp- a transit camp just outside of Molyvos providing dry clothing, food, medical attention for refugee boats landing on the beach. A constant 24 hour watch was necessary at the Molyvos harbour. There was also a car shift, driving the NGO’s car, to pick up and drop off volunteers to the IRC and any other request such as picking up parcels at the post office. Only drivers with an international driver’s license could partake and I was one of them. When I first was assigned the car shift I thought this will be a nice break. An easy shift. Not so. It was a treacherous drive to the IRC. Tucked away down a potholed narrow mountain road. Dangerous sharp turns around mountain corners. Sheer drops commanding full attention. Some corners with zero visibility as to what was coming Large parts of road hollowed out by rain. When wet it was slippery. Driving at midnight, complete darkness, pouring rain, visibility poor- only one wiper blade, the other broken. Too many people, not enough seat belts. One person curled up in the tiny trunk area. Crazy! but no choice. Their lives depending on my capable hands on the wheel.
Also just as important were all of the background functions like sorting out the many boxes of donated clothes. There were two large houses that stored clothes, shoes, blankets, diapers, baby food etc. I found it emotional on my very first shift walking into the main storage house called Anastasia. A huge stately old house that had seen better days. An incredible view looking down onto the harbour. I learnt that this is known as the German house by the locals. It was a previous Nazi headquarters. Karma now completely changed. A house of such evil was now a house of compassion. Many rooms, shelves, bursting with boxes and boxes of donated collected clothes coming from all parts of the world. Reading the writing on the side of a box ‘ Collected with love from St.Mary’s School, Glasgow, Scotland ‘ gave me a jolt. Here I was actually looking at the process. Someone, an individual, just as I had done on occasion in Canada, donated their goods wondering do they actually get to where they say. Here I was witnessing the process thinking about the individuals who had made the effort, believing that they were helping and now I was reading their notes of encouragement, of compassion. They had helped. Made a difference.

My very first shift. Standing in the hall of the storage house. House was cold so needed to bundle up. Each room filled with boxes of donated clothes from around the world. The generosity, empathy, was overwhelming. All items needed to be sorted into gender, age, size, etc. to ensure a quick pairing with the individual, wet, cold, man, woman, child.
Working the night shift at the Moria camp was an experience I will never forget. Something I could never have imagined. The crisis was up in my face. This camp is where everyone must come through to be registered in order to transit through Athens. This is the only registering place on the island of Lesvos. There are two registration processing lines- Syrian and non-Syrian. Non-Syrians are processed last. Tempers flared. Patience long exhausted. Some pretended they were Syrian, throwing away all of their id. Non-Syrian passports would wash up on shore sometimes. Such a difficult job for the Frontex border patrol. They looked like the bad guys with their harsh behaviour, their verbal brutality. At first I was angry disgusted at their behaviour, it was unnecessary to treat these desperate people this way. Over time I could see their own frustration and overwhelment trying to deal with so many people, endless line ups, the responsibility of trying to keep them all contained, protected. Such a chaotic and stressful situation.
The non-Syrians were mainly from Afghanistan and Iraq. Although on one of my shifts we had a Congo family and an Iranian family. We were strictly instructed never to put the Iranians in the same housing as the Iraqis. I remember being very worried that by mistake I might do this in all the chaos. Myself and my fellow volunteer were on our first shift at Moria; complete rookies. Only one other person with us who was our team leader whom I am sure was cursing being given two brand new recruits. We had not a clue where anything was. We were handed walkie talkies, quickly told what channels to use and the appropriate codes. My goodness I had never even used one of these although I will admit I had always wanted to go 10-4, over and out! My Irish coworker in his charming accent tells me he has just heard some news – there is a bus on the way with 80 refugees. We looked at each other with wide eyes. Oh No. We were on our own. Thank goodness we both had the dry Irish sense of humour resulting in an outburst as he saluted me reenacting a scene from the TV show ‘Mash’. ” Reporting for duty “, standing tall in front of me, clicking his heels together. I got a fright, my radio hanging off my belt came alive- started crackling. Fumbling with my radio controls I obviously was not on the right frequency resulting in a piercing screeching noise. Frazzled, clicking onto different channels screaming “Hello this is Fiona. Can you hear me?” My Irish co-worker doing the same ” This is John. Are you reading me?” I felt that we were in a middle of some comedy skit. We were doubling over with the absurdity that we, the two newbies, were left in charge of the tents, who goes where etc. I finally heard a frustrated voice break through my radio static, “What is your 20?” “My what? ” I answered, feeling inadequate. “Your 20?” “Sorry what is that? ” John was noticeably humoured. A huge fed up sigh filled up my radio, a stern voice, “WHERE ARE YOU?” I was on a very steep learning curve. No training and thrown into the deep end but somehow with several uplifting fits of laughing with John I managed to survive my first Moria night shift.
- Blue numbers are the hut numbers. Black writing is how many, what country they are from.
- Huts
- Wall drawing in the young family area
- Buses waiting to bring refugees to Moria camp.
This camp, now run by the police, was a former military prison camp. I had only ever seen something like this on tv. I heard myself gasp. A jarring thud. The place looked very severe built on the side of a steep hill. High chain link fence everywhere topped with loops of razor wire. Dirt and gravel walkways which quickly became a mud slop in the rain. Guard towers staring down upon the containers which housed the refugees. They were referred to as huts but they were more like metal containers. Huts were small, to maybe hold 10 people maximum but at times were crammed with 25 people. No lights. No heat. Huts were dark, very cold. Some nights the metal was coated in a white frost. There were a few huts that had a small inefficient heater. These were kept for families with small children. Windows are not covered; gaping big holes. I am thrust a roll of plastic, scissors and duct tape. As I am on the outside covering the holes trying to coax the duct tape to adhere to the frosted metal frame I hear them. Nervous voices. Seven adults huddled together praying. I can hear them shivering. They had blankets and mats to sit on. Trying to be respectful I did not want to look directly at them. Hard to see. Complete darkness. Knocking on their door I took in cups of hot tea. Black tea with sugar. They were very grateful. Working here at Moria camp was when I felt I had maybe made a difference. I was up close with the people. Many of these people arriving in a very bad state. They have survived the sea crossing from Turkey to Greece and are cold, wet, many in a state of shock particularly the women and children. I will never forget a particular family. It was 2am. Arriving to the camp by bus with 100 or so other Syrian survivors. A mother and child collapsed in the line up. Both convulsing in a state of hypothermia. There were no longer any Drs permitted within the camp. Enforced by the police. Waves of heightened urgency travelled through the camp. People rushing around. Finally we got word that Drs without Borders were now on the scene and treating them. The father standing in front of us incredibly distraught. A translator arrives. He can go and be with them soon. His face, his body, exuded such emotion. I could feel his relief run through me.
Now somewhat getting the hang of the walky talkey a staticky voice told me to take blankets down to the Syrian processing line. There was a newly arrived family with mild hypothermia. I had to get past the intimidating police at the gate. Word was out that if we didn’t have an official volunteer badge then we would be sent out of the camp. I did not have one yet; as did several other new recruits. I put on the official orange vest and held the pile of blankets in front of my chest implying that my badge was hidden by the blankets. I held my head high, gave a slight nod, and walked past them as if I knew what I was doing. There in my view was a sad sight of a family slumped on a long bench filling it from one end to the other. They were waiting to be summoned into the interview rooms. A daunting interrogation. This process was necessary to be registered. They could not go to the family unit until they had all been registered. The mother with a very young baby, two youngsters under 3, a 5 yr old girl, a 10 yr old girl, and the elderly grandparents all looked spiritless even the young ones. The mother was trying to breast feed her baby who was screaming. The poor mother was stressed, shivering, which was making it almost impossible to nurse. The grandparents looked frail, in shock. There was a shortage of blankets in the camp; I had only been given four. Even though I was told that is all you can have I ran off to find more. The night was very cold. Hovering at 0 degrees. I pleaded their case and returned with three additional blankets draping them around the shaking bodies. I will never forget wrapping up the children. Almost like I would to my own children when wrapping a towel around them after a bath. This is something I could offer to these Syrian children. A mother’s touch. Their big dark eyes looking into my face as I drape the blanket starting at the head and then wrap it around the child making it snug and secure. They smile. Enjoying the warmth. The hug. The interview room door opens. The guards now approach. They start shouting for passports, papers. The parents, grandparents, do not understand. The 10 yr old girl is thrown into the role of representing and translating for her family. The guards are getting frustrated and are demanding their papers. The girl speaks again with her parents. They have no papers. The guards shake their heads, slam the door, go back inside. My heart went out to this girl, just a child, thrown into an adult role of responsibility. She was being so brave. Acting so grown up. A lovely face with huge eyes like deep dark pools. I wanted to rescue her. Rewrapping the blanket around her she thanks me. A light in her beautiful eyes. My mind goes to my daughters. So glad that they are safe. How lucky we are. I look to the Mother who is now able to comfort her baby. We speak to one another through our eyes.
I listened to many stories not only from the refugees but also from the Greek people. They are faced with heavy hardships and challenges. This is a country that was already down on its knees. Weakened. Fragile. The effects of the financial crisis had caused the economy to collapse. I have immense empathy for the people of Lesvos. They are the victims behind the curtain. Many of them rely on tourism. Lesvos is an incredibly beautiful island offering everything for the perfect holiday but the media has portrayed it as a refugee island showing distressing images. Locals are very worried. Their livelihoods in question. The arrival of the war ships changed everything. You could feel it in the air. It was a sobering grave sight waking up one morning to the top photo. Gone were the usual fishing boats. Tour companies have cancelled flights. Speaking with an owner of a gift shop I could see the worry and strain across her face. We had several long chats over my time that I was there. The two of us leaning on the counter, two women from different cultures and backgrounds, relating to one another about juggling children, family life, with running a business. The constant worry about making a profit. A month or two of negative profit hardly sustainable. We seemed to understand each other well. While I was in her shop the lack of activity was noticeable. Her telephone quiet. The customer bell on her door quiet. The risk of losing her business due to the rapid decline of tourists was very real. This on top of the impossible tax demands placed on her seemed unsurmountable. When I left, there were hugs, a few tears. I think of her often and hope she is ok. It was a privilege to have crossed paths with her.
It all seems quite surreal how I had arrived on Lesvos, now actually partaking in the biggest refugee crisis since WW2. I had been sitting in my UK housesit aware and anxious of my son’s anniversary of his death soon to be upon me. Feeling not ready to face the harsh reality, the permanent absence of my son in our home back in Canada I needed to find another housesit. I turned to the housesitting website that I belong to. Putting in the months Dec, Jan in the search, a housesit in Greece presented itself. I really didn’t care where it was as long as it would see me through this difficult period. I checked the airfare and it was 64 pounds London to Athens. I could barely get back to Ireland for that. I applied for the housesit and as they say , ‘ the rest is history ‘. Now here I was in Greece watching the refugee crisis unfold on greek tv. I felt compelled to help. After all I was in the right country and I had the time. I applied to a local Greek NGO thinking that my life skills could be of some help. The next thing I was on Lesvos joining other volunteers who had come for the same reasons. For the most part we all had the same respect for humanity, displaying acts of kindness, helping to provide the very basic necessities of life- food, water, and shelter. This contribution of our time, our hours of work, came at our own costs- our food, accommodation, flights etc. It was empowering to see how many people from all corners of the world came to help, to get to know them, hear their life stories.
The more I observed and spent time with people from different nationalities it became apparent that although we come from different cultures, backgrounds, we are more similar than we are different. They are just regular normal people like you and me wanting the same things in life as anyone of us: to be happy, to have peace in our lives.
Helping these people made me feel worthy, better about things – me as a person, the world, life. I most definitely felt a change came over me. A sense of strength, healing. It was a life changing experience. By giving I most definitely received.
Volunteering on Lesvos
Leaning against the empty bench I wondered what family, person, had been here before me. On the bench to my left sit two boys 8 or 9 yrs old. Young faces. Despondent eyes. Children are arriving alone. Some of the young refugees have lost their families in war. Some families can only afford to send one member- they send their child, a young boy, alone. So desperate to give their child a chance. Trying to imagine how those parents must have felt, knowing that they may never see him again sears deep in the heart. Such bravery it took: the moment of placing their child, that moment of separation, their release, placing him in the dinghy praying to all powers above that he survive. To my right – one maybe two families fill up the bench. As I pass I say Hello with a smile and nod of my head. Big smiles across their faces. They are looking at my hair. Pointing. The children, little girls, curiosity in their faces, angelic smiles. Little hands wave- I wave back. So many families displaced, exhausted, children across their knees asleep. Some young families noticeably dressed well, fancy iphones, snapping pictures of each other- smiling, posing, all with excitement, wonder. Other families, the majority, poorly dressed, clutching onto each other. Children tired, crying. Shocked expressions across parent’s faces. A small group of young men pass by me. Walking. Talking. All looking concerned. Phone in one hand. Sports duffel bag in the other. A whiff of cologne.

A strange energy here at the port. Hazy cloudy. Air still. Eerily sedating despite the chaos. The sea calm, smooth like glass.
When I first arrived in Mytilini I met a young man whom I think of often; hoping he is ok. It was a unique exchange between us. I had walked into this busy café for a coffee and this person was sitting at a small table by the window. He raised his head as I sat down at a vacant table not far from him. I said Kalimera. He said good morning. I wondered if he was a volunteer since this was a place where many of them congregated. He was a very athletic clean-cut guy with a slight middle eastern look. He kept looking down at his pants and boots. Seemingly disturbed by his appearance. I noticed that his boots were muddy and possibly damp. His slumped body spoke of exhaustion. I thought maybe he had just come off a long volunteer shift at the harbour. Upon asking if he was a volunteer his eyes shifted downwards and said, ” No, I am fleeing from my country. ” He had arrived to Mytilini late last night. He was from Iraq. The TV in the corner caught his attention. He said that is what I used to do. It was an animated clip. He was educated as a graphic designer. I told him that my son also worked on animation graphics. He nodded with approval. They were a similar age. A feeling of being in the right place came over me. A sense of Jason, his compassion..sensitivity..was present. Thinking if Jason orchestrated this encounter I wouldn’t be surprised, me being there for this poor young man listening to him, giving him my full attention which is what he was needing. Some sort of support if only just for a brief time. Asking if he was travelling alone he answered yes. He was hoping to get to Germany where he had a relative. He went on to tell me about the brutality in his homeland. He is a non- muslim. He is part of a minority religion that has been brutally attacked and targeted for their belief. Even hanging has taken place. He has witnessed many horrible events of religious war. It was one thing to have read about this violence in a newspaper or to hear about it on tv but to actually hear this young man describe it from a first hand experience was startling. A look of deep concern spread across his face as he reached into his shirt pocket pulling out a folded piece of paper. ” This is my refugee pass, my registration paper, to allow me to cross the European borders to get to Germany. It is valid for six months. I don’t feel good about it though. I lined up for hours to get it this morning but I am very worried because the picture is not me.” Passing the one page document over to me, there at the top right hand corner was a black and white copy of a face belonging to a 50 something yr old man, not this young man. I asked did he not tell the authorities. He explained how he was afraid to question them. He would be sent away with no papers at all. He had no choice but to try to get through the borders with this but he was scared. He began to speak openly now with emotion. He was lost, no longer had a sense of life, no home, no job. I could feel this. His eyes were noticeably tired with an underlying sense of shock and fear. He had barely survived. He told me that last night he was two minutes from death. The swell was high. It was dark. The overcrowded dinghy was filling with water. Mothers were wailing, praying for the lives of their children. The sound of the children screaming and crying was terrible as he held his hands up to his ears. My heart empathized for him thinking this will be a sound that will haunt him. All belongings were thrown overboard. Wasn’t enough. He told me about a case the other day when an overcrowded inflatable raft was sinking and several men jumped overboard in order to save the rest of them. They drowned. This took my breath away. Unbelievable that this is happening in this body of water before me. He continued, his voice trembling, telling me he was convinced he was going to die but in the nick of time the Greek coast guard miraculously rescued them plucking them out of the water. They treated us nicely he said, not like the Turkish coast guard who were very rough with us. Hurting us. Treating us worse than animals, not human beings at all.
Last week I had heard that the Greek coast patrol were trying to intercept a boat in rough seas, to help them, but the migrants were scared, they thought the approaching boat was the Turkish coast guard. The inexperienced person at the rudder tried to get away and capsized the dinghy by running into the sides of the coast guard boat. Seven people drowned. Two died of hypothermia.
Volunteering on the Greek Island of Lesvos.
Wind, sea, wet, cold. Eyes of fear, wonder, uncertainty. Man, woman, child. Bodies trembling. My hand to theirs. Offers of a sandwich, a banana, a protein biscuit, a bottle of water. Our eyes meet. A friendly smile. “Welcome. You are safe now”. Wrapping a blanket around their shivering body.
They have travelled for days, weeks, some for months. Their perilous 11km crossing of rough sea in a dangerously overcrowded flimsy rubber boat now behind them. I am surprised that in this cold stormy weather that anyone would attempt to cross. I am told that the turkish smugglers had offered a substantial discount, about half off the regular crossing cost of €1400. A bad weather discount! This is the lure. Desperate people will take the chance. I am sickened. The smugglers preying on desperate people knowing full well that the chances of them reaching Greece safely are minimal. Stories of rocking on high waves for hours, their ill-working engine stalling. No one experienced with the sea. No one knows how to use the rudder. The smugglers point the boat towards Lesvos telling the migrants don’t stop. Children screaming the whole way across. The dinghy filling with water. Throwing over all belongings. Engine quitting. The sea about to win. In the nick of time rescued by the coast guard. They had survived. They had not drowned like others before them. Last week due to inexperience of the poor person at the rudder there was a tragic accident of two boats colliding. Boats capsized. People spilled out. Panic. 12 people are still missing, some are children. Two died from hypothermia. Survivors traumatized.

Standing on the grassy north shores of Lesvos looking across at Turkey- feeling so close I could touch it. Although only 6 miles it can take 2 to 6 hours becoming the longest journey of life or death. As I look out onto the sea I am overcome with emotion that so many people (babies, chIldren, men, women) perished out there. Bodies still out there, not yet recovered.

Molyvos Harbour at the north end of the island receives the greatest number of refugees since it is the shortest crossing between Turkey and Greece. This was our daily meeting point.

A succesful crossing. A smaller dinghy. Through the night 11 other boats set out for Greece- not all so lucky. 19 people drowned. Frigid temperatures below zero resulted in severe cases of hypothermia- death of an infant.
60 pairs of soggy socks. Water spilling out of their shoes. Some with no shoes. Reaching into our supplies-a pair of new donated socks to each person. Steadying the trembling foot to get them on. Cutting up disposable foil blankets into squares. Wrapping the foil square around the cold shaking foot. Their trembling feet placed back into their wet shoes. Hope the foil helps. No dry shoes available. Looking up at them. Attempt to comfort with a smile, a warm heart. They respond with a thank you, a nod of the head, gratitude for human empathy after such a lack of humanity from the smugglers.
Some people appear very embarrassed that they are needing my help. Most of these people are well-educated successful people who never would have thought that their lives could be reduced to this. I listened to people who wanted to tell their story. They didn’t want to leave their homes in Syria. They liked living there, it was their home, their career, their family life. Now their children were unable to be educated, have medical treatment, no vaccines available. Their homes had been bombed. Their city under siege. ISIS in control. Poverty. No food. No electricity. No hospitals. No jobs. No money. No choice but to attempt to cross the Syrian border into Turkey. I was told that this part of the journey was the hardest. A mother telling her unimaginable 3 day ordeal. Afraid, danger all around, exhaustion. Many people had been arrested along the way. Some died from exhaustion after being forced to hike long distances. Sometimes 8 or 9 hours straight. Having to cross a mountain by foot. How she wanted to give up at this point. Couldn’t go any further. Sitting down, crying, state of exhaustion. People helping her. Carrying a child for her. She spoke to me of hiding in abandoned buildings. So many miles of walking. Sometimes getting transportation in covered trucks.
One woman said if her family had stayed in Syria they surely would have been killed. Taking the risk on the sea was safer than staying on their war-stricken land. Where they were heading next, a prison-like refugee camp was certainly safer than where they had come from. Such trauma, displacement, written across their faces. A loss of home, everything that was. I felt this. Not the same situation of course. I could only try to imagine the terror of war but the sense of fleeing for your survival, doing what you feel is the only option for your children, yourself- I got that. A mother clutching her baby, two young children on her hand. Plastic bag hanging off her arm. Such fatigue across her face, her eyes, her body fighting the need to collapse. Her strength is so apparent to me. An acknowledgement from my eyes to hers.
Some women were not sure where they were. One asked, “Am I in Spain?” Terribly confused by the response that they are in Greece. These three women were from the Dominican Republic and had paid to be taken to Spain. How they ended up here on the Greek island of Lesvos was disconcerting. Looking into their scared defeated faces I was sure they knew as well as I did that they now will be taken to Athens and more than likely be deported.
Seagulls. Sweet smell of cherry blossoms on the wind. A welcome distraction from the smell of wet socks. A softening to the smell of fear. Pieces of a boat hull thrown up onto the beach. Torn dinghies caught up on rocks, life jackets, children’s inflatable water rings, water wings. This shocked me. Barely suitable for a swimming pool. Wet clothing strewn along the shore. Each shirt having crossed on someone’s back from Turkey to Greece. Picking up the items of clothing thinking about the people attached to them- a dripping navy blue jacket, possibly from a teenager, a small man. Imagining the history the story behind this jacket was stirring. Holding a small shoe in my hand. A young child’s size. Where is the child, what has happened to the child? Did the child survive? 12 drowned yesterday. 8 missing.
Picking up discarded life jackets I was shocked to see how many of them were actually faulty. “ A despicable poor excuse of flotation”, a fellow volunteer said. ” These aren’t life jackets these are death jackets.” They are filled with non-buoyant material. Many of them were ripped so I reached in and sure enough they were filled with sponge. This of course will absorb the water and drag people down, ending in drowning. I was astounded that people would actually sell these, praying on fellow human being’s vulnerability and desperation- all in the name of €€. This is criminal.
Life Jacket Graveyard in Molyvos, Lesvos. This 25 ft high pile continued to grow daily. We would pick up the life jackets strewn along the shorelines and harbours. Truckload after truckload would take them here. Each life jacket belonging to someone who had either survived or died trying.
Finding Sisterhood in France
An early start. Moira driving. Her long graceful hands wrapped around the steering wheel. An occasional gesturing lift and spread of her right hand brought life to her words. Stimulating conversation flowed. A buzzing energy in the car. A glorious day. Windows halfway down. Wind gently tousling our hair about. A freeing sensation emphasized by the long beckoning roads spread out in front of us. The sound of the changing gears as we dipped in and out of the gentle valleys was energizing, raising my anticipation of the day ahead of us. An occasional creak of the wicker baskets on the back seat waiting to be filled at the nearby market town- our destination. Quiet roads. Not a soul on them. Field after field lining both sides. Some planted. Some not. Maize. Sunflowers. Must be sensational when in bloom. The ploughed fields revealing rich fertile soil in various shades of brown much like milk and dark chocolate. Hay bales dotted about, the white plastic wrap highlighted under the rays of the morning sun. The softness and gentle rise of the land lay like a fluffed up duvet. My eyes easily pacified by this continuous feed of beautiful scenery. My ears soothed by the sound of my friend’s voice. A loosening, a freeing of the deep turmoil of grief that lives in my body. Thoughts simplify. A powerful wave of surreality. In a split second I am rolling on my bedroom floor, I can see myself, I can feel the floor, feel the pain, hear the anguish, the next moment I am back, sitting here in the passenger seat of Moira’s car. Mind blowing. A bus, a flight, a housesit, from Canada to Ireland to France, and now here I am chatting, laughing, driving through the french countryside with this woman whom I am privileged to know and call my friend. Who could have known that such a wonderful experience like this could happen from such sadness and pain. I have not known her for long but yet I have known her all my life. A kind of recognition of one another at some ancient level. Extraordinary. I recall how one afternoon Moira came by to say hello. I had started feeling faint, trembly. I tried to pretend that everything was ok as we sat at the table but I couldn’t seem to override it. How embarrassing I was thinking, I have just met Moira and look at me. This hadn’t happened to me since Canada. I would get these debilitating episodes often in the first year after Jason died. I now realized that the grief, the painful memories had been silently brewing throughout this significant day. Now it was loud. I was at the point of no return; raw and exposed. Poor Moira. She barely knew anything about me at this point. I quickly said to her, ” I don’t feel well, I think I might faint.” Now a high-pitched ringing and nausea. As I lay down on the couch Moira placed a high pile of cushions under my feet. My breathing steadied. No talking. A surprising ease in the silence. Moira sat on a chair beside me holding the space. Allowing me to just be. To let go. Such trust. This must be my Anam Cara. I first heard this celtic expression while housesitting last month in Ireland. It means soul friend. When you meet a person with whom you can be as you really are, be completely open and trusting, your two souls will begin to flow together; this is when you have found your Anam Cara. If you are lucky enough like me it is possible to have more than one.
Continuing on the drive, the landscape began to change. Plum orchards and endless acres of neatly organized vineyards becoming the new scenery. An aging chateau. A river. A lovely old stone arched bridge. A long retired water mill. A canal. Trees weeping over the shady banks. In the distance a magnificent gothic style church towers high up on the hill. The narrowing road leads us down into the basin of this pretty village. Rows of traditional houses, some half-timbered, some stone, all so neat and tidy. Vines and roses scrambling up the sides onto wrought iron balconies. A shop, a bakery, a bar, another church. A graveyard surrounded by high stone walls, roses spilling over the tops, a calming palate of greys and pinks. The gate is wide open, masses of flowers catch my eye. I recognize the flowers- they are all chrysanthemums. Pots and pots of them. Such a variety of colours decorating the grave sites. Wow I exclaimed as we drive past commenting on what I had just seen. Moira explained. Last Friday it was All Saint’s day, a public holiday, everything shuts down. People go to visit their deceased family members grave, bringing a pot of chrysanthemums to leave at the grave site. This explains why previously when I had arrived in France there were so many pots of chrysanthemums being sold everywhere…market stalls, grocery stores, parking lots. I just thought the French had a love for this flower. Moira explained how in France the Chrysanthemum is strongly associated with death. They are a symbol of immortality as it can survive the winter frost and needs little care. One thing for sure you don’t give this flower as a housewarming or hostess gift. We had a good chuckle. Driving past a small outdoor cafe. A few tired looking people around a table. Small white coffee cups. Cigarette in a hand. In this quick glance as Moira drove past I seemed to see so much detail. A person’s eyes. A sadness. The ornate design, the seductive curl of the wrought iron table legs. So clear and precise.
We have arrived at our destination. We park the car, grab the wicker baskets and join in with the flow of people heading to the market square. So many french conversations going on. A very pleasing sound. A definite energy and bustle was in the air. A British voice rings out above the crowd, ” Moira! ” It is her friend Caroline, called Caro amongst friends. A decision was made to have a coffee together before serious market shopping began.
I really like Caro. I got to know her the other week when Moira invited me to come along on a girls lunch at a restaurant in Marmande, a town not far from my housesit. This outing was a pivotal moment for me. Going out with a group of women for lunch was something I did not do in my life ‘before’. Moira was very kind to invite me so I had bravely accepted. No one could know how unconventional my life had been and how frightened I was stepping into this new territory knowing the only reason I could do this was because my son had died. As I stood at the front gate of my housesit waiting for my ride my nervousness was gaining a life of its own. What would I say if asked, ‘ Do you have children? How many? Boys? Girls? ‘ I hope I can keep it together in front of these women, some I haven’t met before. I was feeling vulnerable as I envisioned this all playing out.
An SUV pulls up. Caro behind the wheel. Moira waving from the back seat. A new face looking through the passenger seat window. This was Marilyn. A lovely woman also with a British accent. We drove down into the centre of Marmande to the old part of town. Tucked away in a quiet square was the restaurant. In we went and wow it was so chic, so cozy; tables pushed closely together, people crammed in. Two women raised their hands beckoning us to their table. It was Anita and Lucie, friends of Moira and Caroline. Kisses, one on each cheek were exchanged and we squeezed in. It was a beautifully set table. The glass water bottles were coloured giving the water an appearance of being orange and yellow. We all ordered the sole dish and a few of us had a very decadent chocolate dessert. The presentation was a work of art. We had a jug of red and a jug of white. When Lucie who was closest to the waitress asked, ” Do you all want wine ?” Moira in her posh accent answered, “ Is the Pope Catholic? ” I found this very funny. This was such a dynamic group of women….real life stories being shared amongst us, lots of laughter and emotion. The sound of french voices wafting over me was like music. From where I was sitting my view was stunning- old French buildings with window shutters of various colours and shades, and a most beautiful old church. Again, all very surreal. As I had feared, the question did come up, ” Do you have children? ” Tears rolled down my face with the answer. My tears were not alone. We were all mothers. Lucie, sitting beside me gently placed her hands on either side of my face and held them there as she looked right into me. No words were needed. For the first time in a long time I felt like I belonged. This was an exceptional group of women and they had welcomed me in. Three of these women became like sisters to me and we still refer to one another as soul sisters.
Three hours later, closing down the restaurant, we headed back home. Caro took a different route home. Very scenic. Out in front us was a long straight road as far as I could see. On each side of the road lay a perfectly straight single row of evenly spaced tall trees. So beautiful as they gracefully arched over the road. Moira told me that Napoleon had ordered extensive planting along the roads to shade his marching armies from the heat of the midday sun. Such a sense of history here compared to Canada. Marilyn’s voice, ” Fiona, how are you managing with the French language? ” Well, I didn’t know where to start. There were so many stories and I am sure I created chaos at many places but also many smiles especially with my well spoken phrases, ” Je vien du Canada. Merci. Au revoir. Bonne journée!! ” From my farm feed store experiences: snorting like a pig, running around the shop cantering like a horse, bleating like a sheep, all in order to communicate the types of feed I needed. From the butcher shop trying to buy a chicken breast; blanc poulet wasn’t working so pointing to a particular body part communicated this with no problem resulting in a big smile and ” Ah oui madame.” He treated me like a friend after this, always humoured when I would pull out my newly purchased french dictionary. By now the car was filled with howling laughter. It was a wonderful feel and sound. I then remembered to ask them about this Dove moisturizer that I had bought. ” Is the French Dove cream different from the English version?” At the store I had been so relieved when I spotted it. It was exactly the same packaging as in Canada. Finally, I knew what I was buying. It was even on sale so I had bought two bottles. I was thrilled. However I had discovered it was thick, much thicker than I was used to, maybe it is old stock and this is why it was a good bargain. Then I thought maybe it is shampoo but it definitely wasn’t because it did state the words ‘ hydratation de l’épiderme ‘ several times on the back on the bottle. This I knew meant skin. Well of course the vehicle was now rocking, imagining what it could be. We all had sore stomachs and aching jaws by the time they dropped me off. We were all feeling high on life thanks to the tremendous surge of endorphins.
The next Friday we arranged to meet at 10am for coffee in Monsegur. As I was leaving my house I made a last-minute decision to stuff my bottle of Dove lotion into my bag to show my friends. Each day I had been applying it on my body. It certainly appeared to moisturize but definitely must be old stock as it took about 20 mins to absorb. We were all settled, five cafe crèmes were ordered and we had a bag of almond croissants from the next door patisserie. Placing the bag in the middle of the table, ripping apart two croissants we each enjoyed a piece of the rich flaky treat, a sticky generous layer of almond paste running through the center. Messy but good!!!!! Life felt good. Light. Camaraderie, conversation, coffee, pastry. Marilyn started to tell Lucie about our drive home from the lunch last week, how she had never laughed so hard. It took days for her stomach muscles to stop hurting. We all started laughing and reliving the drive home. What an incredibly fun time that was. Almost like we had all been away on a vacation together. I then remembered about the Dove. I reached down to my purse and presented the bottle of Dove lotion. Caro said, ” Let me see that ” with a sense of urgency and excitement in her voice. She lurched over the table as I passed it in her direction. Caro shrieked as Marilyn poured over her shoulders. Caro shrieked again and started hysterically laughing, ” This isn’t body lotion it is body wash!!!! ” I am like what????? a startled look on my face as I try to digest that all this time I have been applying body wash not body moisturizer. I laughed. They fell about when I replied how it took ages to sink into my skin. One of them said “OMG you are lucky it didn’t rain while you were outside. You would have bubbled up.” Visions in our heads of me lathering up in the rain caused a roar of laughter. One of them said, “No wonder you always smell so good and clean.” Once again another round of sore diaphragms and jaws. As the Dove gets passed around to each person they again crumble into a fit of laughter and the rest of us along with them. It was a most memorable time. None of us will look at Dove body lotion in quite the same way again.
Some times while here in France it feels like I am watching myself in a movie. Like living in a chapter of the story ‘ Eat, Pray, Love.’ Tasting olives from Provence at a market stall in a medieval market square …a charismatic dark-haired French man, moustache, beret, describing the different olives with such passion. I don’t even like olives as a rule but these were different, so plump and juicy. Plus who am I kidding? A deep sexy Parisian voice speaking to me while passing over a large wooden spoon offering me assorted olives to taste, who could resist? Some were with basil or different herbs…some natural …some with a spicy kick from chili peppers etc. I bought several kinds and with a Bonne Journee, Au revoir I was off. As if this really happened. It is like I take a step back and can see myself almost like in a performance. I really have to pinch myself. Like the other day: a six hour lunch at Moira’s, nine of us around a large rectangular wooden table. Many courses of incredibly delicious food. Champagne. French wines. Cheeses of so many kinds. Very intimate in this lovely barn conversion french home. Candlelight, music, great conversation, lots of laughter. My wine glass getting topped up. Very surreal. Listening to the voices, different accents, British, French, Scottish, South African; they speak to me. Hearing my voice in reply, holding a conversation. Like two tracks running. One external. One internal. My inner voice saying, ” my god Fiona you are managing ok here. ” Then laughter bursts out around the table; mine in the mix. The realization that wow these are my new friends. I felt so very lucky. Yet at the same time there is a strong sense running through me that this did not just happen by chance: I was led here. In this group I met a mother who very sadly had lost her son. She spoke generously with me on several occasions sharing her story, her grief. This was a powerful link even though I had just met her; two mothers that live with the very worst searing pain. Her words made a great impact on me and I hear them when struggling. Another incredible experience was being invited onto a beautiful barge called The Body and Soul belonging to special people Lucie and Malcolm. Sitting with my new friends, chatting, crying, laughing, eating gourmet french food, sipping on champagne, Malcolm playing jazz piano, all on a barge on the Drot River in SW France was an out-of-body experience for me. Is this really happening? The coolness of the champagne flute against my fingers, the delicate scent of apples and pears entering my nose, the crisp taste, the refreshing bubbles popping in my mouth awakened all senses. This was grounding. I was here. This was really happening.
Meeting Thich Nhat Hanh
A noticeable presence entered the meditation hall. All heads turned to the far back left corner towards the door. In walked a small unpretentious man garbed in dark brown robes. His aged body erect yet humble, his clasped hands resting up against his diaphragm. A hush fell over the room. An odd cough. The occasional whisper. He began to walk to the front of the hall. Row upon row of occupied mats faced the front. His walk: precise but yet so gentle and in no hurry. No sense of destination. Almost like he was already there. As each sandal met the floor, a sort of smile, an expression of contentment spread across his face. I had never seen this way of being before. It was calming to watch. I was amused at his thick woollen work socks. Similar to ones I had worn back on my farm in Canada.
He passed right in front of me emitting a sense of simplicity, serenity. The air moved. The realization that this ripple of air against my face was created by Thich Nhat Hanh was extraordinary. Tears began rolling down my face. Uncontrollably. Such disbelief that this world renowned buddhist master, author, poet, now passing right in front of me was the very same person that authoured the book, the book that changed my course. This book, from a shelf in a small rural library in Ontario, Canada to here at this buddhist centre in southwest France- the actual place where the words were written- was almost unthinkable. Now here I am sitting on a mat in a meditation hall in France. Almost too much to comprehend. Suddenly there were no boundaries, no separation of any sort, just a sense of being free, being one with everything. Everything shrunk, came down to this very moment. It felt right, everything in the right place.
Such gratitude to the monk who invited me to join them. I felt incredibly fortunate to have received an invitation to Plum Village, to spend the day of Dec.24 with Thich Nhat Hanh and his community. I had read that in the winter he refrains from travelling so that he can stay home to give teachings to the monks and practitioners. They all live together for 90 consecutive days resulting in the energy staying within the walls. Preferably not escaping with people coming in and out hence the expectation of my request being denied but still hoping.
My invitation to join them was signed off ‘A lotus for you.‘ These four words had a profound effect on me catching me totally off guard. I had barely finished reading the fourth word and I was weeping buckets. It felt incredibly personal. I didn’t feel so alone. Such a generous attentive offering made to me from this monk. I later received a further communication from him, ‘Another lotus for you’. So beautiful.
The 24th of December arrived. Up early to feed the menagerie and off I went. This time with a good set of directions from the monk. It was a 50 min drive dipping in and out of wide valleys with such diverse landscape. Rolling hills, rich farming land, scenic rivers. Tiny roads weaving through quaint picture book villages, passing historic churches, a Chateau, vineyards, orchards. The last 20 mins was on very narrow, twisty roads climbing up the vine-covered slopes. Upon arrival I was directed to the meditation hall. Shoes off onto the muddy floors of the entrance and through a door I entered into the large hall. Rows and rows of mats with a meditation cushion placed on each one. People already scattered around. Some chatting quietly with each other, others meditating. It seemed like everyone knew what to do but I felt quite alone and anxious. Nobody seemed to notice my bewildered expression and hesitation about where to go. I initially sat about halfway up where there was a large clump of empty mats. I sat down on the cushion and looking around noticing unoccupied random mats on the front row. I thought be brave Fiona go for it who knows if you will ever have this opportunity again. Carefully dodging the rows ahead of me placing my feet within the small space around each mat and praying not to fall …engage the core..I managed to claim a front row seat off to the left of the small stage where Thich Nhat Hanh would be sitting. A gong rang and meditation began. The harmonic chant of the monks was transformative. The sound itself could be a religion. The monks clearly becoming one with the sound. Thich Nhat Hanh arrived and began his teaching. I was captivated by his voice. Pure. Nourishing. Gentle. Incredibly calming to my soul. He allowed the perfect space of silence in between his words pausing often giving a smile. Hearing him speak the words that I had previously read in Canada was stirring. His presence radiated love and peace. There was a healing energy around us all. I marvelled at how young he looked for his 89 yrs. Almost two hours went by in a blink of an eye. I knew that I had been part of something very special.
From Thich Nhat Hanh’s teaching I received an invaluable tool to help with overwhelming pain- in my case grief. When the waves of suffering arrive, the key is to be mindful of what is happening rather than panicking and trying to run from it which is naturally what your body is telling you to do. The idea is to acknowledge the emotion, the suffering (sorrow, anger, anxiety..) and speak to it with your mind. Show compassion to this overwhelming feeling. To say to it- I am aware that you are here. Don’t worry I will take care of you. Swaddle the feeling much like a baby then hold it tenderly, rocking it back and forth like a mother does to a crying baby. The overwhelming suffering lessens. This wasn’t easy at first but with mindfulness practise, being conscious with what is happening right now, it has become easier to calm the pain before it really manifests.
It is ongoing work.
The following year I returned to France to housesit in the same area. My daughter Kelsey came to visit me. We drove up to Plum Village and the monks invited us to come in and walk around. When Kelsey walked into the meditation hall she was transfixed. Something came over her. An energy. Pure. Spiritual. She didn’t want to leave the feeling. She said she had never felt such peace as she had in there. Thich Nhat Hanh was absent as sadly he had suffered a massive stroke and was in the hospital. As I write this today he has since returned to Plum Village where he is being cared for.
A Privileged Guest
Early rise, menagerie fed, dogs walked…I was heading off to find the buddhist monastery, apparently called Plum Village. It was a beautiful drive, a clear day. Roads alarmingly narrow as they wound up the hills going higher and higher. Praying that a car wasn’t on its way down. Seeing a monastery type building ahead of me standing alone on the hill convinced me that I might be in the right place. A monastery or a church, I wasn’t sure. Either way it was a majestic structure rising up above the landscape. The beauty fed my eyes. Parts of the building golden under the shafts of sunlight.
Stepping out of the car it was noticeable immediately. A wide sense of balance. Eerily quiet – not a soul, not a sound, just a faint whisper of wind. Not wanting to interrupt the quiet I remained still. Leaning up against my car door I became mesmerized with my surroundings. This place was in a realm of its own: seemingly untouched undisturbed by the rest of the world, almost not real. But here I stood, my feet physically connected with the ground. Sense of time oddly absent. Flashes of insight with razor sharp clarity. I was supposed to be here. Here as a privileged guest in this privileged place.
The bells rang out. This startled me. Still not a soul, nor a car. Mysterious. I was in awe watching them ring out, tolling back and forth, the sound reverberating all around. Filled me completely. After the bells stopped, there was a lingering vibrational ‘Om’ sound. This sound I knew. The sound that closed each yoga class I attended in Canada. This had an incredible calming effect throughout me. The vibration I didn’t want it to end.
Still relishing the wondrous effects of the place, now wondering where Plum Village actually was, realising it wasn’t here, I started the drive back down the hill. The narrow snake like road demanded my full attention. Now sitting at the stop sign unsure of which way to turn, there to my left is a woman walking along the road. This is the first person I have seen all day- maybe she can help me. “Bonjour!! Excusez moi”, feeling myself cringe at the sound of my voice as I rolled down my window. She looked over at me. Poor woman having a nice walk totally in her own thoughts and then I come along. Thankfully I remembered a useful french sentence that my new friend Moira had taught me. If I can remember to think of a pedicure, which I can only remember by thinking feet, then I have it – “ Je suis pedu! “ I exclaimed (Je suis pedu meaning I am lost). Feeling quite proud of myself for that, she responded “ Bonjour! Sorry I don’t speak French.” I almost shot out of the car with excitement. Well it turned out that she was in France visiting from the United States and she was on a retreat at Plum Village. I had hit the jack pot. Apparently the place high up on the hill where I had just been is where the monks go to gather some times but Plum Village was further on, watch for the wooden sign she told me. With a ” Merci. Thank you.” I set off again. After some time and now with the road getting narrower again, climbing back up into the hills I knew I must have driven past the sign.
Pulling into an open area to turn around I spot a small church poking out through the trees; just a short walk away. Sparking my curiosity I parked the car. The air was poignantly fresh and crisp. No sounds. Similar feel to where I had just been. Just faint whispers of a gentle breeze. Coming into a clearing I could not believe my eyes. There, right in front of me, were two monks sitting cross-legged perched on a ledge. I froze. Holding my breath, I was overwhelmed by what I was seeing. I didn’t want to disturb this scene. From what I could see, there was a huge drop from the ledge looking onto magnificent views of the Drot valley. I realised that they were young women. Nuns. No indication that they knew I was there. So not to intrude, I lightly walked away to the far end of the church following a sign to a small grotto. Upon returning, the nuns were gone. I stayed there for a while. Sitting on the ledge where they had sat. Absorbing it all. Gazing out over the fields, vineyards, life in the valley. Magical.
I needed to start heading back. I had a farm to care for. I ended up on a different twisty road following a sign for the main road. Almost at the end of the road on my right the colour brown caught my eye. The same brown that the two nuns were wearing. There were rows of brown robes blowing in the wind. Monks working in the garden. Some hanging out washing. I came to the end of the dirt road to turn onto the main road and there to my left were the same two nuns, the ones from the ledge, walking down the road holding hands swinging them back and forth. I was in awe being treated to such a scene of happiness, of simple joy. A warm feeling in my heart. Turning onto the main road I see a piece of wood sticking out of the fence with the words Village des Pruniers hand painted in calligraphy style. This was the Plum Village sign that I had missed. Only painted on one side. There was something inexplicably satisfying about the simplicity. As I drove past the nuns, they looked so happy. Made me smile. I kept looking at them in my mirror until they were out of sight.
Days later I am told that Dieulivol, the name of the place where I had been, means Breath of God. This described exactly what I had felt. Something very spiritual.
Now back home, all sixteen animals fed, bedded down for the night, I decided to do some research on Plum Village. Turns out the one I saw in Dieulivol is for single women and nuns. The one for men and monks is in Thenac. This is where the founder, the zen buddhist master, a world spiritual leader resides. His name is Thich Nhat Hanh. Seeing this name sparks something in me. Where have I seen this before? I dash into my bedroom to get my book that I have brought with me from Canada. The simple book on the breath. The book that I had read in my local library after Jason died. This important book offering me the first sense of grounding, a sense of hope- a life line.
My heart raced off. I couldn’t believe it. This name Thich Nhat Hanh staring at me from my computer screen, was an identical match to the authour’s name printed on my book.
The following year I returned here with my friend Moira and then later with my daughter Kelsey.
Market Day
It was Friday, market day, in this 13th century French medieval village. The place was bustling. French sounds everywhere. The sounds I had only heard on a French movie. Gears rapidly changing, engines revving, a peugot, a motorbike, their sounds echoing between the buildings as they sped down the narrow cobbled street. The soft creamy colours of the buildings, the pastel coloured shutters, particularly the weathered blue ones were satisfying, calming. Passing the church where the door is always open. Upon the market my sight is filled with a magnificent variety of colourful fresh vegetables and fruit. Beautiful fresh cut flowers for sale. A stall with sacks of spices of every kind. A constant feed of French voices. Hearing a young child say “ Papa” was a warming beautiful sound. I felt like I was on a movie set. Cheese stands were intimidating. So many kinds. Certainly no ordinary orange cheddar. A man selling cooked chicken, watching over rows of them slowly turning on the rotisserie while underneath is a huge pan of potatoes, perfectly golden, having been basted by the juices dripping slowly from above. A couple of stands selling paella- looked and smelled delicious simmering away in large shallow pans. This is the French fast food I am told!
Tables with fresh quail, goose, duck. So many choices of meats and fish. Stalls of oysters; shucked and in the shell. Many types of eggs, artisan breads, olives, local wines which of course I had to sample…… I had no idea that duck was such a big part of the diet here. It is everywhere! Even in the cat food at my housesit! Here at the market, I see stall after stall selling jars of duck confit – wings, legs, fillet, any part really, all cooked and preserved in it’s own fat. Jars of duck fat for sale. Jars of gizzard confit catches my eye. That wouldn’t be for me. So many tables selling duck and goose foie gras. I was told the farming families in the area each have their own unique way of producing foie gras. Their confit recipes handed down from generation to generation.
I had arranged to meet Moira, a good friend of the homeowner that I am housesitting for. We were to meet at the olive oil stall at 10.30am giving us both a chance to wander through the market first before heading to the café just off the market square. Walking through the market with her, a wicker basket on her arm – leafy greens and a baguette poking out of the top – was a real pinch me moment. Beside the café was a small patisserie. A seductive sweet buttery aroma wafted out of the door beckoning us inside. Choosing a freshly baked almond croissant to take into the café to have with our coffees was a new concept to me- this was the French way. Moira had a unique presence about her as we entered the cafe. Bonjour! Bonjour! as she gracefully waltzed through, navigating the groups of people as she made her way to the only vacant table over by the wall. I scurried along behind her, with a slight nervousness, trying not to look bewildered. Offering a shy smile and bonjure to the few faces that met mine. This was winter time, just locals, no tourists around, so there was a curiosity about this redhead that had appeared in their local café. I guess red hair with pale skin sort of stuck out amongst the darker hair and sun kissed faces. The atmosphere was lively, cheery, a pleasing hum from the packed room full of energizing chatter. A warm natural light shone in. Right behind me were two round tables pushed together. Every inch of table taken up. Chairs crammed tightly together. Elderly men, raised voices, intensity, excitement. They were playing cards and board games, their coffee cups dotted all around with a shot glass of brandy beside them, all within an easy reach. An old standing lamp was pulled up right to the edge of the table throwing a yellow glow onto their game. Apparently the men sit in the café while their wives are shopping at the market. They do the same routine for Sunday mass. This amused me. Other tables were full of family/friends of all different ages..small children on grandparents’ laps. Such a strong feel of family and community. Men of all ages, body types, standing together by the bar; chatting away aided by their hands, laughing freely, some drinking espresso, others beer, wine, some greeting each other with kisses on the cheeks. I had never seen this before, how expressive and comfortable the men are with each other. Along comes our waiter. Moira’s crisp english accent flips to a lovely french accent, “ Bonjour Monsieur. Deux grand cremes s’il vous plait.” Now sipping on the dark strong coffee through a froth of white and burnt caramel colour, tearing off pieces of the freshly baked almond croissant, mixed with chatting, some laughing, was a surreal feeling. How did I get here? As we talked it was obvious that we clicked. We were virtually strangers but yet there was an ease between us. Almost a familiarity. A similar outlook. We discovered that both of us were from British and Irish families. Months later, we joked about the possibility of being related since the gene pool was relatively small in Ireland back then. After all, my grandfather was from Belfast which is where Moira’s family was from. But most profound was that she had an adult child that had recently gone through neurosurgery to remove a brain tumour. I was relieved to know that all went well. There was an unspoken connection and understanding just from that. We left the café to go for a walk along the village’s protective wall, the original ramparts. Standing by the wall, placing my hand on it, a wall built by people 750 yrs ago, was such a privilege. This area is steeped in history, something I am not used to, being from Canada. A path also winds down the hill to the river where there are numerous walking trails. I must come back to walk the dogs here. From up on the hill the views are far reaching, taking my eyes across the river, down through the valley, and up onto the far hills. Moira asks me if I can see a monastery high up on the farthest hill. With more description, I locate it. She says that is called Plum Village…a buddhist monastery..people come from all over the world for retreats with a famous buddhist monk who lives there. This is amazing I thought gazing over at it.
Before I had left Canada I had bought a small book written by a buddhist monk called Thich Nhat Hanh and I had carried it with me to Ireland, and now France. This book is special to me. Several months after Jason had died, in a spinning state of despair, I walked into my local library in Canada hoping to find a book that could help me. Staring at the small spiritual section, flipping through various daunting heavy books, placing them back on the shelf, my eye caught sight of a small yellow book barely visible on the shelf. It was titled, ‘You Are Here’. From the very first page it spoke to me. I had never read anything like this before. It was simply written, concise, practical. Standing there fighting the tears, reading his words of how to be in the present moment using breath awareness, I could feel a sense of grounding, an ease in my rigid suffering right there and then. It was profound. This book had made such an impact on me that I later bought myself a copy. The one I have brought with me.
Unbeknowst to me at the time, while standing there with my new friend looking over at this monastery, was that the revered monk, the one my friend was telling me about, was the very same monk that wrote my book.
‘ Jeantounet ‘
“ Conchita, Esmeraldo, Esperanza, Pedro, Carlo… “ rang out across the evening air. Hearing this slightly Spanish sounding high pitched voice bounce back at me was most surreal. My god that was me. I am actually standing in the middle of a field on a farm in SW France calling in llamas. For a moment it felt like a weird dream. It had been a busy day getting accustomed to all the various animals and the running of the farm and then to top it off a visit from the farmer who pastures his horses in the fields across the road. He lives in the next village and comes each afternoon to feed them. I had checked out the setup earlier after hearing lots of commotion coming from over there. Squealing and thundering hoofs. I knew these sounds. One was trying to mount another and lots of kicking and running was going on. I walked over to check and yep! one was a randy young stallion that was running with three mares. Praying they don’t break out. The lack of fencing alarmed me. Just a few strands of sagging electric fence between spindly looking posts. I just pray that my mares here don’t come into heat..not on my watch anyway. I hadn’t expected to have an encounter so soon with the farmer but here he was standing at my doorway, lips moving so fast, of course in French, blatantly showing no patience for my blank look and parlez vous anglias? No speak Francais. With hand gestures I said just a minute and ran into the house for my translation book. Spending a few minutes to find it, heading back towards the door I hear a loud vibrating noise quickly getting louder, closer. He is coming through my gate on his archaic tractor chugging out white smoke with an offensive burning smell. The dogs are barking like mad, the pony trotting around, tail up in the air. She is lame so right now she has restricted turnout which is around the house. The llamas have cantered across the field to see what is happening. I am screaming STOP then I remember ARRET ramming my raised hand towards him to wait while I put the dogs, pony and goat away. He seemed oblivious of the pandemonium he had caused or else didn’t care. I could almost see it playing out – second day on the job and animals are out on the road. Pony, goat and dogs bolting off. The drivers are crazy here and I am on an approaching bend on a very narrow country road. Thankfully he stopped, not looking amused, while I darted around sorting out the animals. I must write down some relevant french phrases and be more prepared for next time he comes for hay.
It is very quiet and dark here at night. No street lights. Starry night sky. Far away in this rustic french farmhouse with not a light or soul in sight I am struck with intense emotion. Feel very lost. I am where no one knows of me. This part is good. I am completely alone for the first time in a foreign country. No longer with my Mum who had been with me while housesitting in Ireland. This Mum is a person who feels that she is owed, the world owes her for the bad hand she has been dealt in life. Her son has died and now her grandson has died. Nothing else. Nothing more. It made for a challenging time. Now I am free to just be with whatever arises. No judging or comparing. There is a slightly daunting sobering sense of relief about that.
I am mesmerized with the colours here. The scenery on the way home from Bergerac airport was very pleasing and calming to the senses. A peaceful warm palate of earthy buttery tones. Cream coloured houses with orangey caramel tiled roofs. Gardens still in bloom…roses draping over stone walls…wisteria, ivy. Twisty narrow roads climbing up steeply and dipping down on the other side into the most beautiful fertile valleys- greens, browns, the rich soil recently tilled with tidy small farms dotted about. At each road intersection there is a cluster of little white signs with French names written in black. These are the houses. They have names not numbers. My house’s name is JEANTOUNET. Has a romantic sound to it. I feel like this could be in a french story or movie. Vineyards are all over the place, precise straight rows….yellow and red rich colours highlighted in the autumn light. This is wine country the home owner tells me…the greatest wine region in the world. Apparently it is very cheap..2-3 euros for a decent bottle. This is good! Tomorrow I am going on my first outing to the supermarket in the nearest town of Marmande. I am a little intimidatated with the task but am relying on my translation book, food chapter marked with a book mark for easy reference. I am back on the right side of the road now driving a new peppy citroen. One of the many gadgets is a camera and sensor that beeps if anything is close to the rear and also to my sides. This gives me some comfort having an extra pair of eyes as I head out onto the roads, the roundabouts, joining the fast french drivers. In this new life of mine, whenever I am spooked/ stressed/ anxious about a situation I try to remind myself that here I am , I am surviving the unimaginable despite the most horrible feeling inside of me. When the worst thing that could happen has happened, the death of one of my children, and miraculously I am still here, then everything else pales in comparison.
Before the homeowner left she had invited several people over for drinks in order to meet me. A woman that was seated across the table from me has just phoned and asked me to go to the local market with her on Friday. How generous of her. Little did I know at the time but this was the start to an amazing friendship, a sense of family.
Je m’appelle Fiona
The captain is announcing our decent into Bergerac. A forecast of bright sun, current temperature of 20 degrees. Sounds of oohs, yeahs and laughter filled the cabin. This excitable energy snapped me to the present moment. I had been lost in the back of a young man’s head- the crown, the direction of the hairs, the length, the way the hairs fall- just like Jason’s. Hard to pull my eyes away-nothing else of this man-just this little part of the back of his head. Activity in the plane commands my attention. Looking out of the window, everything is so green, lots of rows everywhere. These must be the vineyards. I get a jolt, my god here I am flying into France. How did I get to here? This moment. This place. I don’t even speak French! Yet right now I do not feel one drop of fear, anxiety. I feel protected somehow. Not alone. Hard to explain as these are all new feelings and experiences for me. One feeling for sure is this secure feeling of being carried to this place. Not sure what this is all about. Maybe this is all part of the psyche’s self protective response to such trauma and loss.
Disembarking the plane, stepping out of the rear door, a blast of heat assaults me. Walking across the tarmac towards the terminal the colour green is everywhere. Everything appearing so lush. It is very warm! I am sweating. I had no idea it was like this. Geez I shouldn’t have worn these high boots. As I walk across the tarmac herded by the mass of people I fall in at their marching pace. Several people ahead of me start waving and yelling something in French. I see waves being returned by some people in a group peering through the wire fence over by the terminal. I wonder if the homeowner is at the fence. I don’t even know what she looks like. Wilting with the heat I urgently try to yank off my heavy winter coat all the while still marching along – now with some conviction in case she is watching. My knapsack and purse fall off my shoulder and swing down around my arm getting caught up in my half removed coat. Of course this draws attention to me as the marching flow of fellow passengers is disrupted, parting to go around me as I stop to sort out my entanglement. My luck she probably is watching. Just when I want to project an image of calm, cool and collected I look unravelled, disorganized, never mind a bright red face with perspiration running down it.
It is a strange concept flying into a unknown place being picked up by a complete stranger. Never mind in a foreign country. Had someone said to me six months ago as I wriggled around on my floor that this is where I would be one day I would have said impossible, inconceivable. It feels like only yesterday that this house sit came about. Just 6 weeks ago I was sitting in my bedroom on my farm in Canada gazing into my computer screen, hoping to find a housesit, something that would carry me well through December and into January. I typed in my search, checking off the box for 6 weeks or more. I didn’t care what country or what animals or what place I had to take care of. I just knew I couldn’t return to my home in Canada once my Irish housesit was finished in November. I needed to stay away particularly over the Christmas period. There was no way that I could go through again what ever that was last year. I needed to be somewhere where nothing was familiar. This will give me the best chance.
The previous Christmas landed two days after the first anniversary of Jason’s death. The whole time was unbearable. I wanted to hide, disappear. I didn’t know what to do, how to do it. Jason’s death and Christmas had become one. An added turmoil with various expectations of me to be normal, for Christmas to be somewhat normal. Falling victim to the comment something is wrong with you. That is until the day I crossed paths with a brave inspirational woman. Her son had died. My heart felt like it twisted upon hearing her words. He was a similar age. An illness. Her worry, her sadness always there. It was the first time that I had heard anyone speak the words that I was feeling. She described how all she wanted to do was to go into the middle of the woods, stay in a small cabin with snow pushed up high all around it- gesturing this with her hands. Just her. All alone. Nobody could get to her. This was exactly me. It really impacted me as she had an abundance of support – a very strong marriage, a supportive loving extended family unlike me but yet she still felt this way. I knew what she was feeling, talking about. It was a profound moment with her. Somehow this validated my sanity. I was not the only one feeling this way. As I sat there beside her the whole rest of the world fell away it was just her and me. The empathy for one another flowed freely in and out, back and forth,between two souls connected by the death of our sons.
The search presented a farm of 16 animals in rural SW France for a 10 week stay. Five llamas, one disabled vietnamese pot bellied pig, one goat, two sheep, two horses, a donkey, two dogs, two cats. Not fazed by that at all and with the support of my daughters I sent an application to the owner. Now, here I was, wondering which woman is her. Of course she is probably doing the same except she has an advantage. I told her I am the redhead with the red suitcase. Chances are, here in Bergerac I am the only one with that description…in Ireland maybe not.
The Wrong Door
One With the Forest
House sitting in the land of lakes, rivers and forests- the midlands of Ireland, I find myself in a magical setting; quickly becoming my favourite place to take my new canine friend for a walk. It is like an enchanted forest that you would read about in a fairy tale. Mushrooms of all sizes, red berries and leaves carpeting the trails winding up and down hills and around moss covered trees with rays of light filtering down through a full canopy of tree tops. Holly trees, hawthorne trees dispersed throughout…absolutely lovely. Babbling brooks appearing out of no where, trickling sound intercepting the hush of the forest. Balancing on a birch branch to cross the stream I fully expected a leprechaun to pop out from behind a tree.
There is an Irish myth that hawthorne trees are the entrance to the fairy world. Traditionally no one cuts the lone hawthorn tree as this is the meeting place of the fairies. It is also believed they bring good luck to the owner and prosperity to the land where it stands. Even today many farmers/land owners will not cut them down, they will work around it. Roads have even been diverted to avoid cutting one down. I was reading how in 1999 work was interrupted on the main road from Limerick to Galway because a fairy tree stood in its path. The road had to be rerouted and construction was delayed for 10 years.
Spending time in this forest elevated my state of mind. Never anyone else here. I felt very privileged to be here within the workings of this special place. Even the walk here was invigorating with a constant feed of bright green fields. Donkeys, cows, sheep, horses dotted about. My canine friend loved these woods; the freedom off the leash, dashing about, so many smells to check out as we made our way on the trails, at times incredibly steep as we wound down through a mass of gnarled moss covered trees. Safe in the bowels of the forest I began to hear its voice. My heart rose to listen. Feasting my eyes on this wondrous sight around me was so surreal. How is it that I am here? In my life ‘ before ‘ this never would have happened nor could I imagine there was such a place. It lands with a heavy thud in the deepest part of my stomach as to why I am here. This keeps happening. This thud. Like a curve ball; enormous power and velocity behind it. My gut catching it. It knocks your breath away, challenges your balance, your stamina to stay upright. Bile rising upwards. The deep pain of yearning for your child. Ready to surrender to it, feeling beaten, a surge, hard to describe, like a surge of life, rose up through me. A lifting energy. Expansive. Insightful. Revealing the delicate intricacy of the forest. I felt part of every living thing and every living thing was part of me. My vision was enhanced. A single red hawthorne berry appeared so vivid, crystal clear. Blades of grass seemed to pop out. The rest of the forest further away. Sort of like a child’s pop up book. Each individual blade of grass so precise. Each one unique. My senses were sharp. In this heightened state of awareness everything felt like it was supposed to feel, I was supposed to be here, I was in the right place, on the right path. At that moment I felt that everything was ok. I felt peace. The fear of my new life went underground.
A foggy light settled in. Oddly comforting. I felt a connection to this; a familiarity. An overwhelming sense of love and strength swirled in this energy. I felt joy as it filled me. Closing my eyes, relishing the harmony with it all, my mind’s eye saw Jason’s face; very still, angelic, innocent. Trying to reach him, tears gently running down my face, a wind picked up and went over my arms and lightly blew leaves around me. Hardly breathing, I looked around, it appeared that the wind was only swirling around me. I spoke to Jason from deep within my heart and soul. No voice. Remaining calm and still. Then the gentle caressing wind slowly subsided and disappeared. Feeling hope, lighter, changed, trying to ignore the logical chatter from my reasoning brain I slowly navigated my way back up the hill dodging the roots and rocks on this rugged path. An onset of exhaustion with a feeling of pressure in my chest caused me to stop. There was a real pain in my chest wall like someone had pried it apart leaving it jagged and sore, vulnerable with no bandage to protect it. With the cracks exposed, the first light was now able to get in.
This experience was a gift. One of several spiritual experiences I have had while here in Ireland. This land has nourished my soul and supported me while I try to absorb, to endure this horrid pain which is always lying just beneath the surface. My intuition was right to guide me here, out from under the suffocating oppresssion of my home, to give me a space to reinvent my self after losing my identity. A safe space to be with my feelings, to work through them on my own terms rather than the pressure to respond to others’ expectations. With my heart hiding my grief and my smile covering my anguish I am slowly relearning my world.
The Sanctuary of Child’s Pose in Grief
Red hair, freckled, just like me!
My reflection assures me, yes this is me, I am here. Here on a train in Ireland on my way to my next housesit.
The sea to my right looks awfully close. With just a narrow strip of grass between sand and train track there is an illusion that we are travelling along on the sand. The sea is shining a greyish aqua blue colour. Out on the horizon it disappears blending into the slate grey sky. An odd person and dog on the beach – what a haven for a dog. The train is slowing down as we approach a village. Passing a dog digging like mad, sand flying everywhere, owner kneeling down as if coaxing the dog out of the hole who by now has proudly dug himself down past his chest. The train quickly picks up speed as we leave the station. In and out of tunnels. Lots of rock, cliffs, an island in the distance. My insides drop. I am my brother Conor in his train, passing through the Rockies, in and out of tunnels. Trying to imagine how he was feeling before the crash; excited I am sure as he neared his girlfriend who was waiting for him at the Edmonton rail station. Thankfully distracted by movement and voices I am back in my own train. A woman sits down directly across from me in this arrangement of four seats: two and two facing each other with a table in the middle. She has bright red hair. Mine certainly can’t be that bright. Trying not to stare I turn to the window hoping to get a reflection to do a comparison. The other arrival across from me is a young girl, 19, maybe 20. Blonde. Books on swimming coach proceedures on her lap. Remembering my children in swimming lessons. Jason as a young boy working hard through the levels hoping one day to become a coach himself. Heart wrenching watching him in the pool. Refusing to stay at home and rest. The only child with marks on his scalp left over from 5 weeks of daily radiation treatments. Bursting love for this child as he perseveres. I am immediately transported to my home on the farm when the reality of him being a swimming coach one day was extinguished. The sound of running water. Jason age 9 having a bath. The bath should be filled by now. Calling Jason. No answer. Bursting through the door. Yelling for Tom. Jason is unconscious. Water licking at his chin. The shock that jolted through me as we pulled him out. Not knowing what was happening. Off to the hospital. Jason was diagnosed with partial complex seizures. Water was now a danger. He must be watched carefully. Never swim alone. No more baths. Showers only. Don’t lock the door. Try telling that to a teenage boy. Over the years the bathroom became a place of many accidents which still haunt me to this day when in there.
An impending sneeze snaps me to the present. The young girl is doing her face- she has spread out all of her cosmetics, skin creams onto the table. Powder is going on now and with each flick of the brush, powder particles come my way. It is going to be big as I urgently rummage through my bag for a tissue. Buffering the explosion the redhead meets my eyes. Wow she has red eyebrows like me. She returns to her phone so I have a good look at her. Yep, red eye lashes and freckles. Pale skin. Rosy cheeks. Just like me. One of my people ! Her hair is cut short with tight curls giving her a harsher look. She removes her rain jacket and my god she is wearing purple. I am wearing purple. A purple cardigan and purple fleece jacket. The young girl now heavily made up, no longer fitting the swimming coach image, is noticeably intrigued by her purple clothed redheaded neighbours. An announcement in Gaelic diverts her attention off us. We must be coming into a large place. Graffiti all along the sea wall. Looking to my left I am amazed- life is happening, busy- cars, buildings, buses, hotels, people rushing. I have been looking the whole time to my right, seduced by the sea. As we enter the station a clear reflection shockingly reveals our hair colour is almost identical. A flurry of activity: people getting off and new people boarding. A new arrival of a group of students all in their school uniforms sit down on the opposite side of the train. I am amazed, then thrilled, to see freckled arms and legs in the mix. The freckles and colouring just like mine. These teenagers were not trying to cover them up. I remember so clearly being embarrassed and self conscious of mine. Avoiding wearing t shirts and shorts. It started when we moved to a small community on Northern Vancouver Island. Other kids staring and teasing me about my red hair and freckled skin. To the aboriginal children I was an alien from a different planet. Now here I am 40 years later and it is quite the feeling seeing other people with the same colouring. A sort of belonging feel. It certainly is becoming very evident to me where I decend from.
Throughout my time in Ireland I have been stopped numerous times by anxious looking motorists or pedestrians asking me for directions. The relieved look on their faces thinking they have found a local Irish resident that will set them right. The perplexed look on their faces upon hearing my accent, ” I am sorry but I am from Canada. ” I had an experience while housesitting in Limerick – I was walking to my car with bags of groceries when a group of East Indian tourists were coming towards me. They pulled out their cameras pointing in my direction. I looked behind me. No one there. They smiled at me. I smiled at them, uprighted my slumped posture, and decided it was easier to play the part. I actually did feel Irish at that moment.
Meeting the Irish Sea for the first time.
I still wasn’t sure that we were at the right place. The sign indicated that we were but I was expecting a large paved parking lot certainly with more activity. This was a small dirt one with one lone car. This place, Curracloe Beach, apparently was one of the best beaches on the Irish coast made famous by starring in the opening scenes of Saving Private Ryan. My canine friend Jumble was beginning to stir so I really hoped that the sign was correct. I had been lost driving up and over hills for what seemed like ages. Meandering on winding roads like I had never experienced before. Little did I know at that time that I had yet to learn the true meaning of ‘winding’ . Such beautiful countryside. Stunning views of rich green rolling hills, some fields appearing almost florescent under the rays of sunlight. Narrow roads dipping in and out of valleys, stone bridges barely wide enough for one car, sometimes a cluster of houses at the bottom of the hill with maybe a small postoffice and shop all in one. No one else on the road just Jumble and I ambling along. Cows and sheep- grey stone walls separating the fields into neat and tidy squares. Tall hedgerows and moss covered stone walls lining the roads making it impossible to see if anything was approaching me around the sharp bends. Constantly saying to myself “ stay on the left, stay on the left…” sitting behind the steering wheel on the right side, changing gears with my left hand. Being cautious on a blind corner, the road now looking more like a track, a huge tractor suddenly appeared towing a wagon overflowing with the largest brightest orange carrots, coming almost on top of me as he urgently applied his brakes. This explains the splattered bits of orange I had seen farther back. In the top part of his cab door there is a shattered hole in the glass about the size of a fist or a large rock. I pull over as far as I could and he the same. He looked more surprised than I felt. In fact he looked shocked! Especially when I excitedly tried to explain that I was from Canada, I am house sitting and looking after Jumble and we are lost. He peered into the back of the car trying to size up what was in front of him. It probably looked as if Jumble was drugged. There he was curled up in his bed snoring away oblivious to it all. I explained that he was deaf and this was his nap time. A big smile beamed across his weathered face. I told him that I was trying to get to Curracloe beach to take Jumble for a walk. Speaking to me through the hole he gave me directions interjected with telling me where I had gone wrong. In a speedy thick Irish accent- Go to the very end of this road, turn left not right, go over the bridge, keep straight past the pub then take the second road on the right, the one with green grass running down the middle of it, that’s the road, then go through Bally…., don’t take the turn to Bally…….everything seemed to start with Bally. I must have looked dazed as he repeated it all again. Embarrassed I nodded as if I had understood it all but really he had lost me before the first Bally… With a tip of his hat, a huge smile, he wished me a good stay in Ireland. I thanked him very much, and with a wave out of my window, a honk of my horn I set off pretending I knew exactly where I was going.
Soon after passing the pub the scenery began to change. I had passed a sign for Ballyvaldon. This rang a bell from the farmer’s directions. Grazing fields were becoming moss covered dense forests. Varieties of huge mature leafy trees reached out over the road to embrace each other forming a canopy. Like I was driving into a green tunnel. Popping out of one tunnel and into another. Dappled shade and bright light giving a strobe light effect. My stomach fell before I knew what was happening. Protective routine kicked in. Seizure!! This could trigger one. Automatatic reflex. My hand flies over to steady him, I look over to the passenger seat…the urgency to make sure Jason was ok took over before my brain sorted out that No! Jason is not here. I am in Ireland, stomach and heart meeting with such force, Jason has died. The loss of Jason, the loss of everything I knew ‘ before’ , came at me with such speed. Like an electric shock hitting me. Suspended. Bandages fall off revealing the gaping wounds raw oozing.
A small black and white road sign distracted me. Eyes squinting, CURRACLOE BEACH with an arrow is barely readable in cracked faded paint. Relieved that I must be close even though part of me was questioning it since I still had not seen the sea, only forest, I pulled in and parked. Lifting Jumble out of the car, clipping on his lead , there it was. Riding on the wind was the smell…incredibly fresh and clean, sort of tangy, the smell sparked something inside of me. It’s the sea !! Jumble sensing the same grew excited. We set off for the forest, both of us a spring in our step. An assortment of trails lay ahead, some straight on, some off to the right, some off to the left. Others, narrower ones, zig zagged through the trees. Taking the path to the left, the one with more footprints, my feet soon began to sink slightly, soil was turning into sand! We were heading in the right direction. My heart quickened. A roaring sound. Suspense. Straining to hear. Waves? Or was it the wind? Still no sign of the sea. Nearing the edge of the forest my heart lept at the sight before my eyes. Sprawled out in front of us were dunes covered in long grasses swaying to and fro as if waving to say hello. Climbing the paths weaving through the grasses, up and over several dunes, stopping often for Jumble to smell the various scents, there at the very top on the other side was this infinite beach spread out for all it’s glory. So vast. Beautiful sand and dunes running as far as I could see. Totally unspoilt. Magnificent. Hardly a soul in sight. Mountains in the background to my left and a distant ship and peninsular jutting out to my right. Off came the shoes, the feel of the sand between my toes, the cold Irish sea under and over my feet swirling around my ankles. Heavy mist and wind whipping around my face and hair. Incredibly surreal and emotional that here I was, the country of my roots, my heritage, Jumble and I standing in the Irish sea. So sad and heavy as to why and how I had arrived here. But yet it felt right somehow; this is where I have been brought to. A safe place. The ebb and flow of the waves. The ebb and flow of my breath. In harmony. Rhythm so soothing. Firm sand so solid, supportive against the soles of my feet- the sensation of the ripples formed in the sand as the balls of my feet rolled off them. All sensations were alive. Life was alive right now. The constant faint nausea had gone. The power of the waves rolling and then crashing, the foam sweeping in all around us. Jumble brushing up against my legs, looking up at me. Content. His soulful clouded eyes saying it all. I was totally present in this moment. No thoughts. No words.
In that space I was one with the universe. In tune. A raised energy. No fear. No turmoil. No separation. Peace. Ease. Clarity. One with the sea, the sky, the sand… the big picture.
A familiar sound grabs my attention. Hoofs! The rhythmic beat of hoofs in a canter. I swing around. Two riders poised out of the saddle on very fit thoroughbreds cantering effortlessly in the deep sand, snorting, foaming, as they passed us; impatiently waiting to be given the reins, wide eyes anticipating the cue. I could feel the excitement. Once they had got past the people the horses accelerated at such speed, blurred images in the distant mist, and then were gone.
Heading back to the car before Jumble started to tire I was aware of my state. I felt lighter, invigorated. My exposed wound cleansed, healthier. With a new soft bandage tenderly placed over it we made our way home.
A special place, a special friend.
Clock approaching 7pm, sitting at the table by the window, eyes pulling in my new surroundings- an intimate stone courtyard with imposing outer walls I got thinking, wondering, what these walls have seen over the centuries. Ceramic pots different colours different sizes, lavender,lemon balm, sweet pea, pansies,…. So many, some bursting with colour and some in their dormant stage but all so lush and thriving. Growing season was well over at home. Must be the perfect combination this mild climate some rain, some sun, some rain……Such a strong feel to the house, so grand but yet feels inviting. When the owners are home this impressive Irish country house operates as an award winning bed and breakfast. Five nights ago sitting in my bedroom on the farm in Canada now I sit here. So surreal. It is quiet and isolating in the back quarters. Not isolating in a negative way as I was now in a place, a new land, that was neutral and this gave me a sense of ease. A sense of space. Intake of air noticeably easier.
Bright colours of yellow and red peppers amongst my plate of rice grab my attention. I had noticed that the constant nauseous churning in my stomach had calmed down a little. Hoping to feel an activation of my appetite, I invite the garlic and ginger odour to wander up my nose stimulating the olfactory. I pick up my fork and with foreign enthusiasm skewer a piece each of red and yellow pepper, piece of onion and then push some rice up onto the order. As I bring it towards my mouth I find myself anticipating the taste, I feel my digestive juices stir. My new canine friend is lying by my feet snoring. What a lovely old dog. An innocence about him. He is deaf and his sight is failing, sometimes quite wobbly but manages well with help and is quickly learning to trust me. He is on various meds so I hope he stays well on my watch. It is strange almost like it was meant to be that I would be with Jumble my first time away from home. Maybe I was reading too much into it but there was something very familiar and somewhat settling. I realized what it was- Jumble’s issues were some of Jasons; hearing, sight, balance. Jumble needed my guidance and care, like Jason. My attention and ear was always on him just like it was with Jason. There was something very special about this dog. We bonded very quickly. We were good for each other. He loved our walks through the fields. Fields of different colours sloping down to the River Slaney. Inhaling it in was nourishing. The air so fresh. The house is huge with very high ceilings and lots of rooms with such character. Not pretentious at all….very comfortable and as cozy as a huge house could be. Some rooms are more grander than others but still inviting. Huge kitchen . A very impressive grand stairway that you see first thing when you enter the front reception. Quite an opportunity to be living here. I feel sort of like the lady of this huge manor and grounds. Only a fleeting thought – I am the help. The garden area is huge…plants everywhere…pots..pots and more pots!!! A typical wild sprawling English type garden with little paths leading in every direction. Fruit trees laden with fruit. Raspberries ready to be picked. An enormous mulberry tree which I had never seen before that is thick with berries. Various lettuces, tomatoes, herbs in the garden. A greenhouse laden with plants. Lots to keep me busy.
I returned to take care of Jumble and his home on three separate occasions. Jumble had made a home in my heart. I travelled miles to come and care for him. The owner would tell me how he would look for me, depressed and unsettled after I was gone. When I would return although deaf and almost blind at my last visit he would know me right away whimpering pressing his head against me as I knelt down to him. On my second return to Jumble an amazing thing happened…a beautiful butterfly landed on my hand as we were coming into the house, returning from a walk. It just sat there. Not in any hurry to go. My heart was going crazy. Could this be? a sign? I walked back to my quarters at the back of the house, butterfly still on my hand, praying it wouldn’t fly off in the house, grabbed my camera, walked back through the corridors to the front doorway. It still just sat there. Worried that it was injured I encouraged it to fly. It left my hand but still fluttered around me. Eventually flying off. This took my breath away. This incredible feeling stayed with me for days and can easily be recalled. Just like the first time I headed into the nearby town. Newly arriving in Ireland, sitting in St.Aidan’s Cathedral, feeling vulnerable, heavy hearted, a yearning to know that Jason was ok, a beam of sun light came through the skylight right onto me. I know that it was because the sun came out and I happened to be sitting in the right place but I got this feeling that it was more than that. I am not a religious person but since Jason’s experience in an ottawa church I remain open. I could feel the warmth and comfort in that beam of light- made me feel safe for that moment. Sitting in this beautiful church, candle lit for Jason, candle lit for my brother Conor, watching the flames flickering I felt some peace. The beam of light came and went several times like someone at the controls of a large spotlight. The second time I was in this ray I heard a voice. Raising my bowed head, coming past me was the priest with a very warm optimistic ” Hello! “, smiling at me as if he knew me. I smiled back at him ” Hello “. A really nice uplifting simple exchange. With my heart feeling lighter I left. Heading back towards the centre of town, climbing one steep street after another I encountered many friendly greetings from strangers. I was wondering did I look so obviously lost in every sense of the word. I felt so welcomed. Upon paying the friendly parking attendant, red cheeked and a little out of breath, I commented on how people here must be in great shape walking these steep hills. He replied “Aye! That or nearly dead.” A twinkle in his eye. A laugh burst out of my mouth . As I waited for the bar to lift, his face poked out of the little window, “God bless. Be well.”
I felt in the right place.
Intuition – Voice of the soul
A restorative yoga pose called child’s pose has become my płace of refuge. Many hours spent here. The body intuitively wants to turn away from the world. Folding down over the knees. Upper body resting on the thighs. Forehead coming to rest on the floor. Eyes closed. Arms down by my side. Sometimes soothing, sometimes not. If the monster is sleeping, my mind quiet and still enough, I hear my own words that I would tell Jason at difficult times. I knew that I should act on them, try to find the energy to get myself together, back to the yoga studio. I had stopped going. I had become so weary from forces at home. Expectations of one another broke the few remaining frayed threads of marriage. Common words to Kelsey “ I’ll be fine love “ were becoming less convincing. The day Kelsey came home to find me curled up on my bedroom floor, unable to get up, unable to pull out of it for her, was a horrible moment for me. I felt weak and defeated. I didn’t want Kelsey to see me this way. I didn’t want her to worry over me. I needed her to concentrate on trying to figure things out for herself, to look after herself, both of the girls, to learn how to live in their changed world..a world without their brother. She lay down on the floor beside me. Holding onto each other looking into Kelsey’s worried face I felt such an immense surge of love and fight for her; for all my children. I knew right there and then that I had to change my circumstance, change my crippling surroundings if not for myself but for them. I could only imagine how difficult it was for them. Everything had changed. Even how they saw me was foreign to them. For the first time in their lives they saw their Mom on her own. This is not how it is. This is not Mom. Where is J …it is always Mom and J. This was their only view of me. A huge shift in their world.
” A family is like a body. When a family loses a loved one, it is as if they have lost one of their limbs.”
After this experience I began to feel a strange sensation. A presense of something unexplainable. This feeling began to radiate throughout me. Communicating to me from somewhere deep. No conscious thought or reasoning. It was a clear, honest, organic, full-on sensation telling me that I would not physically survive another bleak winter and beyond in these barns and the house. A visual intuition of me slumped in a corner of the barn or my room appeared. I would expire, cease to exist through some sort of natural occurrence. I don’t know how, but I felt it. Not self-inflicted. Just fade away. I had never felt a feeling of certainty like this. It was as if every cell in my body already knew this before I did and was trying to communicate this knowledge to me. A gentle nudge. A whisper.
The repetitive daily tasks of going from the barns to the house was killing me. Trying to keep my gaze looking down so I wouldn’t have to see the lifeless sad window, no face, no wave. Knowing what I have to open the door to. No life. Rooms that held my family are now filled with profound sadness. When in the barn working, I still have the feeling of such urgency, my ears still on full alert listening for Jason until my brain remembers that Jason has died. Dimness. The house makes a sudden sound, a seizure, I am running to it when the weight of the world comes crashing down upon the sudden realization that it can’t be Jason – he has died. I just knew that I could not continue this way, my body would not continue if I didn’t self-care. I did not want my girls to find me expired, slumped in a corner in the barn or my room. This premonition strangely wasn’t alarming. The feeling felt calm, solid, expansive. When in conscious thought I was very distressed about leaving my daughters. To be far away from them was going to be hard. Thankfully both girls have amazingly supportive boyfriends that have been there for them all along and knowing that these exceptional men love my daughters…makes it possible.
Six months later with an opening in the storm I made the jump. Blindfolded, numb, into the arms of the universe. Taking me far away from anything familiar; the constant triggers. Trusting the soul. Deciding to survive. The heart’s gaping wound well bandaged and protected. Praying no one will bump into it. Leaving who mattered to me…no words. We were all so brave saying ” Goodbye ” to one another. A supportive friend said “Spread your wings Fiona. Fly! ” I was literally throwing myself to the universe and seeing where I would land. Surrender to the universe, trust it, and see what happens. It is the only choice I have. With my children planted in my heart, knapsack on my back, purse strewn across my chest I crossed the gap between ramp and plane and headed to my seat.
The Physical Affects of Grief
Walking towards the barn my peripheral vision picks up the colour purple. I stop- my clematis is covered in purple blooms- how and when did that happen? Green grass. When did snow become grass? A surge of fear. Where have I been? Life just keeps going- birds building nests, flowers producing buds, everything in nature continuing as in previous years whereas life halted for me. When seeing the purple flowers I am aware that I am being pulled along.
When I venture out in public it shocks me. How is it that people are driving around, walking together, having a coffee, laughing with a friend- don’t they know what has happened? When in a grocery store I find myself searching for someone that has the same look on their face, a reflection of how I feel, just someone who knows, to not feel so all alone, another Mother…I know we would recognize each other. To silently acknowledge the grief and struggle… for them to say in their eyes “I know”.
Driving home, feeling small, Jason’s seat empty, I pull up behind a vehicle with smiling family decals on their back window. So many vehicles have them now. I don’t remember seeing so many before. There is a row of decals in the order of Mom, Dad, Boy, Boy, Girl, Cat, Dog. I thought how awful if one of their children die then what do you do? It would be torture trying to remove your deceased child’s decal- then there would be a space and you would have to move everyone over. Or would you take them all off or would you leave them as they are but then some stranger might say “Oh I see you have 2 boys and a girl, how old are they?” and then what? Either way it would be very sad and painful. Of course nobody thinks that the unimaginable will happen to them.
There is a sheer curtain seperating myself from this unknown world that I am now forced to live in. Feel incredibly misplaced. About six months after Jason died I told my Dr that I wanted to help people, maybe work for an organization such as Drs without borders. This seems so ridiculous now. Even my surroundings one year on still appear foreign and far away. Early this morning while working outside I saw all from above- it was the strangest sensation. It was as if I was out of my body looking down upon myself, this tired looking person buckling under the weight of her grief and fear, trudging in and out of the barns and across the paddocks stepping on the same footprints that she put there yesterday and the day before and the day before that…..The same routine but internally always changing. I see this person struggling physically-walking slipping trying to keep her legs underneath her while leading 1100 lb animals through snow and over ice. Pushing and pulling the wheelbarrow steeped with manure through the drifted snow. Her upper body pitched forward, lower torso trailing, carrying bags of shavings, bales of hay. No one else, just her. I felt defeated and alone after this experience and it became clear to me that I could not do the horse boarding business any longer.
Back in the house, lemon juice falling onto a fresh cut on my thumb felt oddly satisfying. The sting made me feel alive. Grounded me for that moment.
I am startled by how grief has rampaged through my physical body. Catching a glimpse of myself in a mirror I don’t totally recognize the person looking back at me. Pale, thin, more lines, a downward curve of my mouth. Protruding collarbones catch my eye; where did they come from? People have told me that I am looking so much better which makes me think how ill and gaunt I must have looked before. My eyes look different. Almost like the hazel colour has disappeared. No expression. Dull. Despite adequate nutrition there is a persistent loss of weight and muscle. Upon receiving massage therapy for an onset of sciatica the therapist was astonished at the state of my muscle fibres. Like they have been rearranged. The muscles have a popping, bubbling sensation. Explaining the physical exertion in my job I could tell from her voice that she suspected there was more going on. Lying face down my heart started pounding. I watched the tears start to fall from the horseshoe shaped head support down to the floor. My body began to tremble. I was done for. Now sitting up, nursing a cup of herbal tea, tissue box on my knees, I told her what was going on with me. Being a mother herself she couldn’t imagine. She told me ” grief is physically demanding and can really take a toll on the body and that my body, my nervous system, is in a state of chronic stress and has been for many years. The death of my son has now put my body into a state of collapse. Don’t ignore what your body is trying to tell you.” This became clear to me when one morning I woke up and couldn’t lift the front of my foot. When trying to walk the toes dragged, it was impossible to stand on my heel. The only way I could walk was to lift my knee up higher. This frightened me and how was I going to do my job? A diagnosis of Foot Drop was made. Thankfully my gait eventually recovered but I was beginning to understand what the massage therapist had told me. This was my body’s voice and I needed to listen carefully.
Strange things began happening to my eyes. I truly felt that every part of me was weeping so I wasn’t concerned when a tear drop shape slid back and forth across the darkness behind my eye-much like a bright plump rain drop sliding across a window. It was like I was crying inside. While outside at night filling the horse’s water troughs I kept seeing intermittent flashes of light out of the corner of my eye which disappeared as I quickly turned my head. I had myself convinced that this was Jason trying to communicate with me. Weeks later I mentioned this to my Dr. and she suggested going to an ophthalmologist. Turns out it wasn’t Jason, I had a serious problem. The raindrop shapes were called floaters and they were crossing over my retina. The flashing lights were possibly from a tear (rip) in my retina. The next thing I was at the Eye Institute where I received emergency surgery for three retina tears (rips) and the starting of a retina detachment. I had never had any of these concerns before and now I sat in the very same chair in the very same office where Jason had sat for his last eye examination. I was overwhelmed. Shattered. Flooded with grief. The strength and spirit of Jason was with me as I quietly went into the surgical room.
Upon reading the following excerpt from a book by Deepak Chopra I realised that my physical body is actually grieving, suffering; it wasn’t just a sense of heavy pain running through tissue and cells that I was experiencing. If I was going to get through this dark tunnel I was stuck in I needed to tend to my physical suffering. This is my home, body and mind- all one. The body was communicating this to me. I needed to pay attention to its needs, to slow down, to be gentle to it.
” Grief is like depression but even more cold and numbing. The body can feel so heavy and and listless that the person feels dead while they’re still alive. Massive physical disruptions, toxic chemical changes happen right away. Stress, weakness,and decreased functioning will spread from organ to organ. Grief is a state of distorted energy that can last for years. Can make you susceptible to disease. This distortion of energy if allowed to grow can cause incoherence everywhere and if this seed of disruption is allowed to grow the energy of the whole body will break down. “
Meeting Restorative Yoga
I had made it. I had arrived at the yoga studio. The receptionist hastily directed me to the ‘Earth Room’. Glancing up at the clock, the hands were almost perfectly aligned over the twelve. The Restorative Yoga class that I was aiming for started at twelve. Hurrying down the hall, nearing the ‘Earth’ room, I saw a woman dressed in flowing clothes standing in the doorway with her hand on the knob, getting ready to close the door. She smiled and greeted me with a warm welcome and gestured me into the room. This was the teacher. While apologizing for my lateness I noticed her serene glow. Just being in her space made me feel better somehow.
The room was full to capacity. Rows of heads whipped around to see who the disruptive straggler was. Feeling small and exposed and almost ready to bolt, I hear “MOM!” A wave of elation runs through me. Those voices are my offspring. There at the far side of the room against the wall were my girls sitting crosslegged on their mats; this was everything I needed. They are the most beautiful girls and how thoughtful of them; they had remembered me saying that I felt more comfortable against the wall off to the side- felt supportive and private. Once I saw my daughters, I was so glad that I had made the effort to get myself up off my bedroom floor. Smiling relief spread across our faces as we absorbed one another. I was so proud and inspired by them for their braveness as unbeknownst to everyone else in that room I knew what it took for them to be there as I looked into their grief filled eyes.
We had just recently joined the yoga studio acting upon my Dr’s suggestion that yoga was proving to be effective in times of trauma. At our previous class, a few Mothers had commented on how nice it was to see Mom and daughters taking a class together; what a lovely sight and how they wished their daughters would do that with them. As I smiled and nodded I wanted to scream out what had happened to us; what had happened to Jason, the reason we were there.
So far we had attended a few Hatha flow style classes and I was quickly becoming convinced that yoga was not for me while in this fragile and fatigued state. The lack of strength to stand strongly, to balance in the various yoga poses was too much for my shocked contracted muscles. Trying to learn the many poses, the ‘right’ way to do them, added more stress onto my already frazzled nervous system. I wanted to hide when I would see the teacher’s eyes on me as she started to weave her way through the other students with me as her destination. She would then correct my alignment by placing a hand on my shoulder and hip and invasively opening up my protective hunched up body. Of course her intentions were good and in normal circumstances I would have been very receptive but when you are ‘naked’ and needing to protect your heart it felt intrusive. The one thing that did make an impression on me while in a Hatha class was that when I was in a standing pose with both feet firmly planted on the ground, the sense of connection became apparent. Then to focus on distributing my body weight evenly to all four corners of each foot gave me a new awareness of my feet, how they connected to the floor. The sense of body and mind was centering. The instruction of visualizing roots travelling down my legs and out through the soles of my feet, burrowing deep into the earth was calming with a sense of stability. Most impressive was that while standing in the ‘warrior’ yoga poses it became clear to me that this was what Jason was all about: the symbol of courage, bravery and strength. I did eventually return to Hatha Yoga when I felt physically stronger but for now I needed a more gentle healing type of yoga so here I was today to try out this therapeutic style and the word ‘restorative’ was inviting.
This was to be our first Restorative Yoga class together. My girls had already secured my spot with the props I would be needing: bolsters, blocks, blankets, eye pillow. I noticed that some people had even brought their own pillows and cozy looking blankets from home. With a flick of my yoga mat I was promptly down on the floor with a daughter on each side. Reclining back on a bolster, a folded blanket under the head, arms out to the side with palms facing up, a bolster under the knees, eye pillow placed on the eyes and lastly covered with a Mexican type blanket we began the hour of coming together to be nourished.
The soft sound of tranquil music filled the room and the teacher started a breathing meditation. I felt apprehensive not knowing what to expect. The idea was to observe the breath as it goes in and out of the body. The act of breathing was something that I had never really consciously thought about; I guess because it just happens automatically. Trying to become aware of it without controlling or changing it was challenging. I was wrapped up in judging wether my breath was either too short or too long, too gentle or too forceful, am I doing it right or wrong? This caused my breathing to become uncomfortable. Almost as if the teacher could tell that I was having difficulty, her timely suggestion of concentrating on where the breath enters the nose was taken in. This sensation was most profound. Concentrating on the area below the nostrils just above the upper lip I noticed that the air had a slight coolness when going in and and was slightly warmer when it came back out. With the awareness and curiosity of gently holding the mind right there with each breath, a fleeting sense of ease ran through me. There was no right or wrong. Just to watch. No judgement. It is what it is. The soft chanting music began to wash over me. My mind was settling down. I felt different- can’t explain really- best description would be ‘lighter’.
As I brought this same curiosity and awareness to my ‘whole body’ , noting the suspension and the release on the ebb and flow of my breath, I felt a layer of tension drop allowing a release onto the support of the bolsters. It was a flicker of light from within the darkness, made possible by using something so basic as my breath, which was always with me. A wave of deep emotion surged. The loss, the pain, the deep sadness, the yearning, all came flooding back in with such tremendous force. I was shot right back to the outside of the labyrinth. When it was time to move to another pose we were instructed to gently come up to a seated position. Upon raising myself up off the bolsters, there at my side had been placed a box of Kleenex. No word or expression from the teacher. When we went into the next pose she came over to me and gently placed an additional blanket on me which was incredibly nurturing.
I knew that I was in the right place, a safe space, and so my journey with Restorative Yoga began.
A Mother’s Trauma.
Photos of women wailing with reaching open arms
family restraining her
her trying with all her strength to grab her child lying covered in a sheet
the pain and yearning and complete disbelief across her face
it doesn’t matter if she is dark or white whatever nationality or culture
the pain of your child dying is felt the same right across the human race
war, illness, accidents….
same expression of insane sorrow
A Mother’s Grief
There are no words. No mother, no human being, should ever have to lay eyes upon their dead child. The need to be with my son, to help him, to make sure he was ok, was overwhelming. A complete rupture to my psyche. I was thrust into immobilizing fog with no order, no clarity. The sorrow and trauma across my daughter’s faces shattered my heart. Such fear and worry for them. Our lives forever changed. From the very moment that my brain processed the delivered words “Jason has died”, my world spun right off it’s axis. ‘I’ was no more. The extreme anguish that Jason was alone took me to the very edge. I plummeted to such depths of despair beyond any conscious thought. Beyond grief. Into darkness. Isolated. Amputated. Fear. The death of one’s child is a prison. No escape.
Crippled by a feeling of insanity, my mind desperately clung to familiar sounds: the squeaking and crunching of snow under my boots; the grinding and scraping of cleats meeting the lurking ice; the rustling and swishing of snow pants as my legs mysteriously carried me towards the barn. Upon recognizing these sounds there was a moment of self-awareness bringing me temporarily out of the distorted and detached realm that I now existed in. I was no longer part of this world. Feeling as if I was a visitor stuck in between planes of life hovering above the earth. Alone, stripped, raw, soul searching for soul.
Swish-right, swish-left. I see my feet and legs moving beneath me, disappearing and then reappearing, but yet I don’t feel them. The sense is that they are not attached to me. Frightening. I know that I am walking, I see my boot prints. I feel like I am going crazy. Dragging my body from my bed to the barns where daunting chores awaited me, seemed unattainable. Such fatigue. I felt like I was encased in cement. I can’t survive one more second; the second somehow passes. Then it hits, the shocking jolt revisits with such force and speed landing right into the pit of my stomach. A mournful sound comes up my throat. Stomach queasy, mind spinning. Soul-deep yearning. Searing sorrow. My body halts half way to the barns. I don’t feel well. My legs are weak. I am lightheaded. A huge wave of sadness crescendos; I can’t breathe, I am choking, I can’t swallow. There is a huge lump blocking my throat. The weight on my back now getting heavier crushing and caving my chest in. Fainting felt eminent. I knew it would be unsafe in this -32C temperature but part of me was willing to fall into the bleak hands of winter. Thinking of my girls made me fight. Reaching deep, I stood up tall and thrust my chin up to the sky enabling me to finally swallow and breathe.
Upon reaching the barn I set my sight on the hog wire partition. Fighting against a collapse I wrapped my heavily gloved hands securely around the metal bars and let my body go limp. A persistent agonizing ache ran through my legs, arms, chest, back, ribs, teeth, face, like a bad flu. Somehow I eventually was able to summon up just enough energy to perform the next task at hand.
Slowly walking back, looking towards the house, everything started to spin. I became sick to my stomach. No sign of any life. No face at the window. Everything grey. I open the door. One foot in. Empty. Silent. No Jason. A primal guttural sound breaks the silence as I fall to my knees.
Nothing could give me the slightest relief from this raging pain and sorrow until the day I lay down on a yoga mat.
‘Jason’ Celebrations
Jason’s Motto, ”Never Give Up”
“What is a DNR?”
‘I can feel it coming in the air….’ , Phil Collins filling the room. Lovely to see Jason enjoying the concert dvd. His feet resting on the coffee table, slouched sport socks rocking back and forth. Great energy was beginning to build with the anticipation and excitement of Jason’s favourite part of this song, the famed drum roll. ‘I’ve been waiting for this moment all my life, oh Lord..’ , the cue to start getting ready. Air drumming on deck, bated breath, Jason quickly glancing over at me, checking that I was ready….the explosive BA BUM BA BUM BUM BUM BUM BUM…. both of us in sync. Wonderful! Jason had included this song on the ‘Truck Tunes CD’ that was often playing when we were in the truck. Drum rolls alternating between left and right speakers, Jason drumming slapping his thighs, me drumming on the steering wheel. Sometimes I would go a bit overboard to add an extra spark. Jason would shake his head, whole face beaming, “That’s my Mum!” as I played it up.
It was such a relief that Jason was now feeling comfortable on the new prescription of hydromorphone. Last week had not been the case. Percocet had rapidly become ineffective for extended pain relief. Messages and calls to Dr. B’s office. My head spinning from their gentle nudge towards palliative care. Catching me off guard. I am sure he mentioned a year. How does the family prepare for this? How does one prepare, for your child to die? How does one prepare, for the agony of watching your other children suffer? Such anguish knowing there is nothing I can do anymore to protect each one of my beloved children, such a lack of control against the harsh realities of tomorrow.
Yes, with the unrelenting force of NF2 raging through Jason’s central nervous system, I had visited the terrifying ungraspable thought, that burying my son was plausible, but it was a damaging territory for me to be in. When trapped in there, it was a dark place, almost like a poison creeping in with the capability of bringing me down crashing. I couldn’t afford to venture into this territory. My children need a strong capable Mum. I need to be a strong capable Mum. I have a horse business to run. Need to source hay for the winter that is upon us. Jason wants to go Christmas shopping. So hard to clear my mind and bring some order to it. Need to just stay in the present.
Today was a good day. Plans were made to go out this afternoon to Jason’s favourite spots. With immense relief, hydromorphone every 6 hours was giving Jason effective extended pain control. Jason was full of life. His foot tapping away, tucking into his second sandwich, Jason was happy, Phil Collins performing his encore set, it was all good. Jason settled down for a nap. Once asleep, I dashed out to tend to the horses. Jason’s sleeping pattern has been changing, now getting up in the night. Behavioural changes are happening. Jason doesn’t remember how he felt yesterday. Each day is a fresh start. This truly is a blessing. Jason is in a great mood most of the time, witty, positive, and determined. Making plans. Jason wants me to set up a meeting with the disability employment worker after Christmas.
Rapid changes were soon to pounce upon Jason again. Jason now needs the hydromorphone topped up every 2-3 hours with ibuprofen in between. Losec has become ineffective for stomach pain. Palliative referral started. Neurological weakness increasing. Traumatic seizures on the stairs. Declining hand-eye co-ordination. Jason needing lots of help with most daily functions. So incredibly difficult trying to get through the demands of the day inside and outside. Instrumental, was the enormous help from my close friend, an amazing support on so many levels. Frightening how fast everything is happening to Jason. Palliative referral still in the paperwork stage. Auditory hallucinations. Visual hallucinations. Confusion. Loss of use of left arm. Ataxia. Palliative papers fast tracked. A Palliative Doctor on the phone, she lived close by, she needed directions. She will be here soon. Quickly wafting sprays of ‘clean linen’ air freshener in the porch and kitchen hoping to cover up the lingering barn odour from an early morning of mucking. Anticipating the arrival of a Palliative Dr coming into my house triggers intense anxiety. Trying to keep it together; counting the 17 steps as I pace back and forth. Running upstairs to check out of the bedroom window for signs of her car coming up the long driveway. Running back downstairs. Quick check on Jason. Still sleeping. Back to pacing. Back upstairs……Sweaty palms, body trembling. The Dr.is at my door. Sitting beside her at my kitchen table. Jason still sleeping. Trying with urgency to keep my emotions locked down tight in order to competently brief the Dr. Her voice, “…and if he should stop breathing do not call 911” met my ears. Listening to her explain why, was mind altering. Is this really happening? “Have you already signed a DNR form?” the Dr. said. “What is a DNR?” I ask. The answer so heavy and final. Signing the Do Not Resuscitate order…watching the letters of my name gravely appear on the dotted line. The Dr. was a very supportive, compassionate person; had children of her own. I was instantly fond of her and felt relieved that she was here to help Jason and the family. She really got the dynamics of the family. I woke Jason up, introducing this new Dr. as a friend of Dr.B’s. Dr.B. had asked her to pop by. With this approach, Jason would be accepting of her but most of all not be alarmed. Jason had never been open to anyone in the medical profession coming to the house. The Dr. was really lovely with Jason. She treated Jason exactly how I was hoping she would. Jason soon warmed up to her, feeling comfortable with his new Dr., even treating her to a taste of his dry humour. I could tell that Jason was quickly gaining another inspired admirer. She examined Jason and started him on Decadron to reduce cranial swelling and Domperidone for his tummy. Her estimation 3wks-3months. Can’t breathe.
That afternoon Jason was in great form, chatting away with his sisters laughing. I wanted to freeze frame this moment in time and stay in it forever. I felt so much love for them. Watching the three of them; drinking them in, inhaling them in, desperate for this scene to permeate deeply into each and every cell of my body- the sight, the sound, the feel, all to be secured within.
That evening under a clear night sky, the bright moon casting just enough light, I stood filling up the water trough behind the barn. So quiet. Solitude. A hush in the crisp night air. My body crying, wanting permission to physically collapse. A quick glance behind me. My eyes met with the purity of fresh untouched snow gleaming under the moon, beckoning me to rest there. Before I even realised what was happening, every muscle released. Falling, the journey in slow motion, I fell straight back and just lay there. Completely still. Snow up against the perimeter of my body, keeping me snug. Calmed by the organic sound of my exhalation; the white fog floating out of my mouth illuminated by the moon.
Desperate phone call made to the Palliative Dr. after a most upsetting collapse of Jason, bringing us both crashing to the bathroom floor. Loss of upper left side. Hospital bed arrives into the living room. Two days later – Dec.16th, ambulance transport pulls up to the back door. They have been informed, “Where Jason goes, the Mother goes”, as I climb up into the back to be beside Jason. Talking to him. Reassuring him. Jason snoring and unresponsive.
Each day the hospice with the amazing staff became our new home from morning until very late at night at which we headed back to our own beds for a recommended night’s rest. ‘They will let us know when Jason is near the end but meanwhile we need to stay well for Jason’, which I realised and understood. Still never quite sure whether to ignore their well-intended advice. “Expect to be here well over Christmas”, said the Dr. at the latest examination of Jason, late evening of December 22nd. With the added stress of my Mum who had just arrived- swelling in her legs from flying I needed to take her home. The fold up cot all ready remained resting up against the back wall of Jason’s room.
It is the following morning. My cell phone on the bathroom floor rings: I’m in the shower, soon to leave; Kelsey is about to leave her apartment; Siobhan has left her apartment, probably almost there; Tom is leaving work mid-morning. I answer the phone. The voice, “I am so sorry but Jason has died 15 minutes ago.”
No further surgery for Jason.
This day is here. Keep it together, keep calm, be strong. Feeling rough. Restless nights. Intestines keep complaining about their rather abrupt cleansing. Siobhan is coming to stay with Jason. Jason does not know that I am going to see Dr.B. I told him that I have an appointment for a check-up with my Doctor. This was one place that Jason did not ask to come with me, this, the dentist and the library!
Jason is in good humour this morning, excitement in the air of anticipating the time with his sister. A change in routine was good. Jason loved his sisters, loved being in their company, he knew that he had the best sisters any brother could ever want. Jason is back to living the day to its fullest. With Siobhan now here to listen for Jason I could concentrate on getting ready. Such a luxury to blow-dry my hair instead of the usual air-dry. Checking my watch, I was right on schedule. All dressed in my ‘off the farm’ outfit- my few pieces of clothing that weren’t horsey mucking out clothes. My ‘hospital bag’ packed early, already in the car so Jason wouldn’t spot it, packed with all the usual necessities and precautionary items : Jason’s medical file, Brain Tumour Assoc. reference book, extra pens, pack of tissues, bottle of ginger-ale, bottle of water, anti-diarrhea pills, anti-nausea pills,Tylenol, a sick bag, all bases covered, ready to aid me in any of those situations. Knowing I was prepared for any sudden affliction, gave me comfort. Now all I had to do, was to brush my teeth, and I’d be on my way. I am in the bathroom doing just that, when I hear a huge crashing sound of dishes coming from the kitchen. Running to the sound; it is Jason in the midst of an intense seizure. His right arm thrashing and he is heading over to the stove and is getting boxed in between the stove and nearby kitchen table. He is going off balance and I grab him from behind, now standing right behind him with my arms clasped around his chest. In Jason’s right hand he has a full bottle of uncapped diet coke tightly gripped and each time his arm swings up and back, the coke shoots out. 950ml of it. Small puddles of coke on the floor make it incredibly slippery. Coke is running off my hair, down onto my glasses and face. Clothes are wet. Siobhan hearing the commotion came running in to help, got Jason and I steadied, as any moment we were going down. With Siobhan now holding Jason, I opened my mouth to tell her that I will grab some towels to throw on the floor so we can get Jason out of there, and a mouthful of toothpaste liquid came drooling out cascading down my chin. The physical component of the seizure was now easing off. Quickly mopping up the coke with the towels before Jason became aware of the mess, I peered up at Siobhan. Needing to cock my head from side to side, attempting to get a clear visual of her, vision obstructed by the continuous trickle of Coke arriving on my lenses, Siobhan, with empathy, softly said, “I know this isn’t good, but, it is kind of funny.” Feeling the trickle dropping to my chin detouring around the drying streams of toothpaste, I became amused with what I must look like. We broke out into a giddy chuckle. It was a welcomed moment. Our friend ‘ Mr. Humour’ always ready to play and lighten the mood. Jason now safely out of there, clean clothes on him, hearing Siobhan reiterating to Jason that he had just had a small seizure, that everything was ok, I raced upstairs. I peeled off my soaked clothes and panicked trying to find something else to wear. All that I had were barn clothes. With no choice, on went an old pair of jean capris and a bright green t-shirt that said Boston Sports in large dark blue capital letters right across the chest. Now running late, I sped off in the truck remaining in the fast lane for the 30 minute drive. My coke-drenched hair dried quickly. It was hot, temperature in the high-30s and without air conditioning I had to drive with all of the windows down. That is, except for mine, the driver side window was broken. Hot air blowing in through the front passenger window caused my hair to have an extreme wind swept look, sweeping everything to the left, up and over. By the time I got to the hospital my hair was wild and stiff, giving me a much startled frazzled look. There was no movement in my hair, it was set hard. My skin on my face felt unusually tight. Walking through the hospital and standing in the packed elevator I could feel the wide-eyed stares. All I kept thinking was thank goodness I didn’t run into any wasps in the parking lot; they would have been all over my head and followed me into the hospital.
Sarah came to the waiting room to get me. She appeared compassionately surprised by my state. I am not sure if it was the BOSTON SPORTS shouting out from across my chest or the shellacked spiked hair. Looking at her expression I could only imagine what she is thinking. Trying to justify my odd appearance, I started nervously babbling that I didn’t start out looking like this, that I was actually dressed nicely before and so on… My face is feeling so incredibly tight, facial movement feels restricted. I could feel my eyes growing wider as it became obvious to me.. it’s the Coke. While casually trying to push down the spikes of hair, which was not a bright idea as the sticky coating flaked off in little bits, I could hear my voice going on about the advantages of coke on the hair, a better set than any ultra-hold hairspray…. My adrenaline and nerves were running off with me. All I wanted to do was pull out of this, thinking to myself why did I start? Knowing full well sometimes it is just better not to say anything and this was definitely one of those times. In walked Dr.B., this stopped everything. He asked Sarah to stay which had never, ever, happened before. Heart is racing and pounding. A few irregular heartbeats send an odd flutter up into my throat. Feeling nauseous. A sudden reach for my ginger-ale. We were right down to business. I knew that what I was about to see or hear was going to be a pivotal moment. I could sense the stressful tension of them knowing what I have yet to hear. Pulling up the latest MRI on the screen, I immediately saw the increases in size of the tumours that I was very familiar with. This most recent image showed a large increase in the anterior cranial fossa meningioma. It had more than doubled in size since the previous MRI of 8 weeks ago. Oh No! Poor Jason. This is what was causing the drastic change and debilitating pain. I am floating. As I stare at this lethal monster, my surroundings strangely feel weightless. Two new tumours are confirmed in this radiologist’s report and they were clearly announcing their presence before my eyes. NF2 was showing no mercy. The left mengioma tumour that was removed in Jan 2011 had triumphed in returning, putting Jason’s eyesight at risk again. Dr.B., “Jason would need two major brain surgeries.” I just shook my head. My mind took me back to Jason’s previous surgery, the incredibly difficult days for Jason in intensive care. It was touch and go in there a couple of times. I know that Jason cannot safely go through this again. Jason is weaker, reflected in his current weight of 154lbs compared to a consistent weight of 190lbs up until a few years ago. Dr.B., “So far Jason has done well and has been lucky that nothing has gone wrong, but inevitably something will….an uncontrollable, unforeseeable event.” The words Mortality and Morbidity were present. I asked, ” If Jason had a stroke would he be fully aware?” The answer was “Yes.” That very thought..Jason lying in a bed, immobilized, paralysed, blind, almost deaf, Jason freaking out in a state of panic was an unfathomable thought. An unfathomable situation for Jason and our family. We all knew that Jason would want to have surgery at all costs if he is made aware of the tumour threatening his sight. Jason would not digest the big picture. To Jason, not operating, leaving the tumour to naturally rob his sight would be unacceptable, I do know that. Dr.B. pointed out that Jason is at great risk of losing the optic nerve in surgery itself as there have been two previous resections in this very area; it just takes a change in blood supply to the nerve. My recurring nightmare of Jason being deaf and blind resurfaced in my mind. Prior to this meeting, Dr.B. and his colleagues had met for a round table discussion about Jason’s case, one of many, and the general consensus was not to do surgery, the majority thought the risks were far too high. I hear my voice, “What kind of time frame are we talking about?” I was out of body at this point. It sounded like a line in a movie. Dr.B. answered, “Well considering that this is ‘Jason’ we are talking about, it could be anywhere up to a year, at the most.” I am so afraid for Jason. So afraid for us all. My poor girls. I am dizzy and spinning with this fact closing over me. Trying to process what is happening here, it feels like something will snap in my head and I won’t be able to pull out. I want to scream and run to Jason as fast as I can, the need to save him but I know I can’t. My poor precious son. It was a very emotional appointment. I signed the forms or so I was told later on that I did. I arrived back home in a lightheaded daze, ‘Palliative Care’ information sheets hidden in amidst Jason’s medical file. Taking a deep breath as I removed my shoes, I hear Jason’s voice “Is that you Mum?” As I rise above the haze, cheerfully announcing my return, I approach the living room, digging deep to be ‘normal’. Smiling at my children, my heart hurt. Discovery channel was on; a welcomed distraction.
“The Kid’s in Trouble.”
Hands pressed onto the wall to steady himself Jason stepped onto the scales…154 lbs..this number was a stranger. The nurse made the necessary adjustment for the amount of contrast dye. Seeing this low number caused a surge of anxiety within me. The nurse started an IV line into a vein on the back of Jason’s hand in preparation for the injection of contrast dye. Jason was booked for a lengthy MRI appointment. We had been given an emergency spot.
Jason was booked to have a full set of brain and cervical spine images taken without contrast. Jason will then be given the contrast dye and an enhanced second set of brain images will be taken. The MRI technicians with smiling friendly faces greeted Jason with a “Hey Bud”, giving Jason high 5’s. Jason really enjoyed the playful banter. We were familiar faces to them. With a smile and a nod I would get a “Hi Mom.” I always thanked them and was so grateful of my special privileges to accompany my son. Once I got Jason into the gowns and his belongings into a locker, I stayed in the Patients Only zone with Jason right up until the MRI started. This waiting area was most unnerving for me. Situated just on the other side of the MRI machines in a small alcove, there were 4 chairs in a row, placed tightly up against each other. Each chair occupied with a gowned patient, some with an IV, some not. Jason with the IV needle inserted into his hand, the line taped to his arm, sat patiently in a chair. I am standing beside him. Jason looking proudly amused as he watched me answering MRI related questions from the other patients. I became useful at instructing how to put the gowns on; first one goes on facing backwards, which I sometimes was asked to assist in tying. This was tricky, as people were undressed, so I did my best to keep my eyes lifted. The second one faces forward, which at times I would help guide their arms into, and then ties at the front like a dressing gown. An occasional reminder of removing jewelry and hair pins was needed. I always thought that this would be a good volunteer position. As I smiled and chatted with them helping to ease their anxiety I was very aware of Jason, my senses sharply tuned into him to catch a change in his breathing, the slightest sign of a hand moving too quickly, a foot lifting abruptly… This split second of catching these subtle changes made all the difference in the outcome of a seizure. The stress of knowing full well that if he had a seizure it would be horrendous, arms flailing, the IV line ripped out, equipment being knocked down, Jason falling over the chairs and people. It is all happening in my mind as I stand there. I am appearing calm on the outside, well so I assume, but inside anxiety is raging as I play through each one of these possible scenarios. There were times when a seizure did occur in various hospital clinics. The intensity of the seizure in compact areas with equipment and people is a most terrifying time…dental clinic, eye clinic, hearing clinic… Wherever we would go I would immediately survey everything around me, planning my best escape route to get Jason out of there safely, keeping equipment upright, and most of all to avoid other people getting hurt. It really was a miracle that Jason didn’t have a seizure while in the MRI machine since many had occurred soon after, in the truck, on the way home. The MRI scanner is a narrow tunnel; pillows and foam cushioning packed around Jason’s head with a velcro strap across his forehead, necessary restraining for clear pictures but a distressing thought in the event of a seizure. People I know have said, “you must be used to it all by now,” but you never get used to it. Seeing your child ill, going through these proceedures, is something you can never get used to. You just become better at keeping yourself together. Sure all is familiar but the stress level never gets any less; you just get better at concealing the worry, keeping the calm brave exterior, all for the sake of your children. When you have children you lose the freedom to be as down and pessimistic as you want and it forces you to be strong. Jason’s first set of scans are finished and he has just been injected with the contrast. The loud jackhammer knocking, banging, high pitched chirping, squeaking sounds resume. Throughout the next hour I could hear them talking to Jason through his headset, telling him the time and the sound involved with each picture, “Jason, this will be a 3 minute picture and this time it will be a loud, higher pitched sound, please remain still.” For the hour that Jason lay inside the MRI tube my senses are on full alert, watching for any sudden rise of activity in the monitoring room, looking for the tech’s reactions to see if they are shocked by what they see on their screens.
Jason’s headaches were debilitating. Tylenols 3’s w/Codeine alternating with Naproxen taken every 2 hours. Any type of noise intolerable. Dark sheets pinned above each window. No washing machine, no vacuum, no dishwasher, no TV…house as quiet as possible. This morning Jason was very lethargic. Internal panic set in. Messages laced with desperation had been sent to Sarah and Dr.B. detailing the decline in Jason and the urgent need for stronger pain medication. It was Monday morning, I called first thing and Dr.B. was already in surgery. Sarah would speak with him as soon as he came out. In this case it was best to wait for Dr.B. rather than take Jason to emergency. In the earlier years before my relationship with Sarah and Dr.B. was solid, before I had the privileged contact numbers, I did take Jason to emergency. We totally spun the resident neurosurgeons on their heads. I am explaining to them about Jason’s case as their eyes became larger and larger, me trying to mentally steady them as they stare off into Jason’s latest scans. I remember the two residents looking through the daunting medical file, a thickness of an encyclopedia..a relieved thankful response as one of them rushed off to photocopy my summarized notes. Jason arriving before them, a post-op patient of Dr.B, the Chief of Neurosurgery at the time, didn’t help with the resident’s stress level. It all ended well after a visit from the neurosurgeon on call. It was a steep learning curve that evening for the resident neurosurgeons.
We would wait for Dr.B. Jason would have a rest. The pain and pressure in Jason’s head intensified when lying down, so he remained sitting up. Draping the blanket around the front of his body, tucking it in behind him, cushions propped, I pulled the coffee table in close. Jason interlaced his hands across his chest. Legs out in front crossed at the ankle now resting on the coffee table. A soft cushion under his feet and a blanket placed over the legs and feet. This was all done in silence; it was a dance that we had perfected over the years. As I would do the finishing touches tucking in any bits of blanket, I was flooded with this powerful feeling of nurturance. Maybe detecting this, Jason in a slurry voice coated with optimism, “It’s ok Mum, it will pass.” Jason would power down, he had this innate ability to go within, knowing at some point whether it be minutes, hours or days, that eventually this would pass, there will be a clearing up ahead, and this pain would be in the past. These three words ‘it will pass’ is a gift from Jason that I say to myself often. I sat beside Jason for much of that day in silence. Bathing in this deep silence I became aware of a shift. The atmosphere was noticeably pure, calm, and safe and it was in this unique kind of silence, that I could feel the light within me, the Mum, the caregiver, meeting the light within Jason, my son, the care person. Time, words, thoughts, images, were all absent.
My incoming email button lit up. It was Sarah…a prescription of Oxycodone has been called in and an MRI was booked for tonight at 9pm. Helping Jason up into the truck we went right away to pick up the prescription. Jason took an oxycodone pill with a swig of Coke in the truck and by the time we were home the pain was easing. Such an overwhelming sense of relief for Jason. Within a few hours we were back in the truck heading off to the hospital for the MRI. Jason was in good spirits. ‘Truck Tunes’ cd was playing. New pain medication had done its job. Jason was eager to have this MRI tonight to see what was going on. My worrying mind became distracted by an aroma of horses and barns. Oh dear!! I had been feeding and putting the horses to bed just before we left home and now in the confines of the heated truck it was very evident. I was heading into the hospital’s No Perfume Zone so there was nothing I could do; I just hope that there are some horse lovers at the clinic and that the air conditioning is on!!
The following days were overcome with anxiety. Anticipating the results was nerve-racking. I was so fearful for Jason. When my level of anxiety was like this, on overload, the floors and walls would appear to tilt. When outside tending to the horses, walking across the paddocks etc. the connection between my mind and the mechanics of walking was absent. Looking down at my legs I was rattled by the fact that I was walking with these legs but yet I didn’t feel like they were mine, they didn’t belong to me…a very detached feeling. The other morning I was driving my truck taking Jason to his favourite sports store and a white truck like mine was coming towards me. I thought to myself, “that must be Tom driving my truck, I wonder what he is doing coming home at this hour ?” when it hit me that I was driving my truck!!!!! This feeling really frightened me.
Sarah was on the phone; “results are in, Dr.B. is here, and he would like to speak with you.” My adrenaline skyrocketed. Dr.B.’s voice, “Fiona, the kid’s in trouble.” I can’t even describe the feeling. With all my will I had to extinguish the panic and listen carefully to make notes; a new tumor growing right anterior fossa, anaplastic meningioma on left into nasal cavity growing, meningioma left parietal (behind ear) growing, acoustic neuromas and neck tumours stable.
Dr.B.,” It will be a difficult decision on what to do next.”
A winter’s day on the farm.
Hauling myself out of bed, I am met with the roaring sounds of the frigid North winds blowing in. I was dreading going out in that. Almost 5am. I had to get going. We had an appointment at the hospital and had to leave by 845am. Jason’s left eye had a swelling again. Jason had been home from the Neuro-ICU for 11 days. For the first week back home, swellings, low blood pressure, low oxygen output (anemia), and seizures made for a very stressful week. Thankfully Jason began to do better allowing Jason’s 32 staples to be removed. These staples were in much longer than intended due to the recovery complications. As a result, the staples were not easy to remove. The neuroscience nurse had never met a patient quite like Jason. She remarked that anyone else would have been screaming from the pain. Jason remained quiet and focused. Once again the word ‘STOIC’ was in the room. Over the following days we went to Jason’s favourite computer and music stores so all was looking good, until yesterday…a persistent swelling around his left eye again. Dr.B. said to bring him in.
Fifteen horses were waiting. I was physically exhausted. Yesterday it had snowed 20cms of wet heavy snow. My body was sore from trudging through it, and from repeated bouts of shovelling trying to keep the snow away from the barns. It was the kind of snow that when you swing your shovel to dump the snow elsewhere, it sticks, doesn’t leave the shovel, and the weight of it almost rips your arm out of your arm pit. I had already done a number on my back over the past few days by lifting soggy wet horse blankets, each one weighing a ton.
Stepping out of the house, the shock of cold air bites my face. I hear the convoy of salt trucks and snow ploughs on the road. The temperature had plummeted overnight to -30C with an added vicious NW wind-chill. Indentations in the snow from horse and human were now frozen solid, making the walking treacherous. Hips, knees, and back insisted on having a bossy conversation with me, not wanting to co-operate on heaving me back up into the tractor cab. I was feeling beaten, completely defeated, wondering how I was going to get through the work that had to be done. Fortunately, I always somehow managed to get it done. Knowing that there was no option; we depended and needed my income, I had to get back into the house before Jason woke up… were the sure catalysts.
By the afternoon we were back home from the hospital. Jason was on a new course of steroids. Weary and tired, we were all relieved to plonk down in the living room. There was no talking, no TV, no music, just the faint humming noise of the fridge and Jason’s steady breathing as he slept on the couch-his inhale and exhale evenly spaced, rhythmic, causing my eyelids to feel heavy. An odd rustle of newspaper came from the other couch as my Mum turned the pages. A quick intake of air from my Mum grabs my attention. A headline had jumped out at her, halting her breath. This day, February 8, was the 25th anniversary of one of the worst train disasters in Canadian history. Twenty-three people were killed in a collision between a freight train and a passenger train near Hinton, Alberta on February 8, 1986. Conor, my Mum’s only son, my only sibling, Jason’s only Uncle, was one of the 23 people killed. Here in the paper was a descriptive article with disturbing pictures and testimonials of the horror that happened in the passenger car that Conor was in. Conor’s train was hit head on at full speed by CN’s westbound train. On Feb.8, 1986 our lives were traumatically altered and forever changed. The death of my brother is a constant thread that weaves through my life. The shock and devastation is easily accessed from my mind. Walking on the train tracks…coming upon the sight of complete disarray and destruction, the sounds, the smells, forever engraved in my mind. Conor, age 23, was robbed of his life, his bright future of getting his degree, getting married, having children…. My Mum was subjected to the worst shock and trauma imaginable. Now, here is my Mum lying adjacent to her grandson, having flown over from England to be here for his surgery and recovery.
As a distraction, I glance through the window meeting the empty white fields. The unforgiving wind is whipping across, forming a hard icy crust on top of the snow. A desolate feeling washes over me. Gazing back over to Jason, getting lost in his angelic face poking out from under his blankets, his half-shaven head revealing evidence of intrusive entries, I felt powerless. I look over to my Mum lying down on her couch. Newspaper now on the floor. Again powerless. In that moment, I felt like the three of us, in this small lone farmhouse, were fighting all elements. The fierce winds gusting around us, the house creaking from winter’s grip combined with the illness, worry, and grief that was present inside this room, at this moment ,covered me with waves of oppression. Having to live watching your child fight for his right to live is unacceptable. Living life with the horrible images and sadness of my brother dying is unacceptable. Living life seeing my Mum struggle with the overwhelming grief of the loss of her son is unacceptable. Each and every day my task is to master the skill and learn to accept the unacceptable.
Jason wakes up-his face lights up with a smile …”is it ready?” The comforting smell of rice pudding in the slow cooker was wafting in. This was Jason’s favourite-I could never make enough of this for him. Watching Jason enjoy the rice pudding with a keen appetite, and then ask for a second one, gave me great satisfaction knowing he was getting the much needed calories. This feeling brought me back to the present. My other feelings went underground. While chatting and joking with Jason about ‘Nurse Rhodes’ being back on duty, I handed Jason his various pills followed by cleaning his incision, checking for any swelling or redness, checking his temperature and checking his blood pressure. Jason’s wit was in good form as he chatted back to me.
The gift of humour from down the line of Irish and British generations is a godsend. We are all able to have a good laugh at exaggerated scenarios which seem to lighten the scenario we are actually in, even at the most difficult times. It has been our saviour. For me, it has been that, along with a glass of wine at the end of the day. The day I read that ‘a glass of red wine a day is good for the heart’, I was in. Of course, I missed the part where it said a 6oz glass. Most nights I enjoy a glass of wine or maybe two. I look forward to it, the full-bodied taste and the elegance of sipping the wine. My one luxury. I have noticed though,that over the years, my wine glasses have got slightly larger !!!!! A funny thing happened the other night. My Mum came into the kitchen and asked me for a straw which I assumed was for Jason…he likes to drink his Ensure drinks with a straw. I gave her a blue bendable straw that J likes and my Mum picked up the open wine bottle off the kitchen table, stuck the straw in, and drew back. Brilliant!! It was a much needed light moment in amongst all of the turmoil. We had a great laugh over that.
Jason in the Neuro-ICU
Dr.B. entered the ICU family room. Mask tiredly hanging around his neck. It was 4.00pm. Eight hours had past. A strange silence hushed over the room. Dr.B.’s voice, “Where’s the Mother?” From the back of the group in front of him, an apprehensive voice,” I’m right here.”
My phone had stayed silent throughout the day so I was hinging the surgery outcome upon that. I looked into his eyes and face for evidence. Nothing. He looked straight at me and said for everyone to come into the ‘quiet room’. I burst out, “Is Jason all right? Is everything ok?” He led us into this private room with a couch, a couple of armchairs, a coffee table and lamps dotted about. The pressure sensation in my ears gave me the impression that it was soundproofed. The lamps were all dimly lit projecting a yellowish-amber glow. Everyone filed in behind Dr.B. and claimed their spot. Heart pounding; I thought for sure that something had gone wrong. He wore a serious, neutral expression as he stood in front of us all. Seconds seemed like an eternity. I was bracing myself for what was going to come out of his mouth. Thinking I can’t do this, I heard him say, “Let’s put some light on in here.” I watched him walk over to the light switch by the door. He flicked it on, “that’s better” he said as the room changed to brightness. It took me a moment to register what was happening. OMG ! I knew that this was the sign that Jason was ok. Bright lights= good news….Dim lights=bad news.
Jason was in the ICU. It had been a manipulative surgery and had been very tough on Jason. The best news possible was that Dr.B. had held up two fingers in front of Jason and Jason acknowledged them. He could see. The emotion was overwhelming. Jason, Dr.B., and the team did it !! So incredibly happy for Jason, I hope he digested the fact that he could see and that feeling is running through him. We all gasped with relief and so incredibly grateful to this amazing neurosurgeon that once again got Jason safely off the table. After profusely thanking Dr.B., the atmosphere in the room became saturated with celebratory chatter, giddiness, adrenaline. Hugs and shaking of hands filled the room. So much love in that room for Jason.
The next week living in the Neurosurgery ICU was a harrowing time. Horse owners and friends arrived at the barn, once again, to help with the horses and pets. Forever grateful to them. Jason whisked off for emergency CTs. Speech garbled. Facial nerve damage. Blood transfusion. Eyes swollen shut. Head swollen. Jason unable to see. Jason too weak to be moved. Not safe to be sedated. Holding onto Jason’s hands, talking him through the procedure, while the resident neurosurgeon, Mohammed, aspirated his head removing CSF fluid. It was a team effort to get this done. Swelling went down. Mohammed was in awe and humbled by Jason’s strength and tolerance of pain and he told Jason that. He said if that was him you would hear him screaming at the other end of the hospital. Mohammed did a brilliant job. Jason eventually could open his eye and see. What a moment…a huge high! Jason’s inner strength and courage was amazing. ‘Stoic’ was a word that followed Jason.
Mohammed told me how moved he was by watching the interaction between mother and son and felt privileged by knowing Jason and being part of it. Mohammed was very soft in his mannerism… deep kind eyes. Standing in Jason’s room, Mohammed shared a little of ‘his story’ with me. Mohammed was sent to Ottawa by the Saudi Arabian government to be trained as a neurosurgeon. When he was a boy in Yemen he would walk miles in the desert with no shoes, carrying his baby brother who had hydrocephalus. He was taking his baby brother to see a neurosurgeon, Dr.LeBlanc, who volunteered in Yemen. He operated out of a tent, just him and one nurse, keeping it as sterile as possible. Yemen being a very poor country didn’t have any doctors that could help Mohammed’s baby brother so this was his only chance. Spending time in this tent, Mohammed knew then, that Neurosurgery was what he wanted to do. His brother had a shunt implanted into his brain and still to this day 25 years later he was still doing well. ‘An amazing surgeon’ said Mohammed. Dr.LeBlanc saw something in Mohammed. Dr.LeBlanc invited Mohammed to come to Saudi Arabia to start his education. Mohammed eventually received a letter of recommendation which was his ticket to come to Canada. Mohammed, not speaking English, conversed with the staff of the neighboring British Consulate to learn basic English and his ‘ABC’s’, as he put it. If I remember right, Mohammed came to Ottawa in 1995. He showed up at the University of Ottawa with his letter of recommendation in hand and they accepted him. Mohammed came to the Civic in 2005 and now here he is with my son after performing a successful surgery with Dr.B. He told me that this was how he could give back.
I was honoured that he shared this with me and I felt a real connection at that moment to this man. He expressed his immense admiration for Jason and how wonderful it had been meeting Jason’s family. I thanked him for all that he had done for Jason. He was very courteous, expressing how sorry he was about the 7th(facial) nerve but that they weren’t God. I told him that they were close enough to being God in my eyes.
Jason walked back into his home 7 days later.
Jason’s surgery day has arrived.
I was searching for Dr.B’s face amongst the flurry of activity and energy on the other side of the doors. Identically dressed humans, blue scrubs, caps, and masks, just various heights giving them an individual identity, all walking with a seemingly urgent purpose. Shock waves ran through my body realising that all of this was to do with Jason. I remembered Dr.B. saying that it was best to book Jason’s surgery after the holidays. The A-team will be all refreshed after Christmas vacation and will be at the top of their game. This recollection brought me some comfort. Jason had the best possible chance for a good outcome.
Jason and I waited on the other side of the doors. My eyes dreading the movement of the clock’s minute hand as it got closer to 8am getting Jason closer to entering the OR. Jason lying quietly, IV monitors calmly beeping, his aura bright, his whole being focused on what was ahead. Holding his hand, reassuring him, telling him that everything will be ok, I prayed myself that it will be so. My mind, fighting to win over the insistent urge to vomit, the body to faint, the tears to burst, was applying everything within my power not to show any signs of worry in my face. Stay light. Keep it together.
I knew from my talks with Dr.B. that anything could happen…a bleed out, a stroke, paralysis, permanent damage to speech, vision. The plan was to sneak into the brain and tease the tumours out without the brain knowing, to find the right path sneaking around without triggering alarms. The acoustic neuroma tumour compressing Jason’s brain stem, pressing on the 7th and 8th cranial nerve, was a formidable adversary and fighting it was always a battle.
People sent messages that they would be praying for Jason…all positive vibes and thoughts coming through the channels to Jason. Jason always liked to hear about that and he was genuinely thankful and he felt the support. Over the past few months Jason had started praying, whether in the house or when we were in the truck. He was praying for nothing to happen to his eye. It would stir my heart watching the way he would put his hands together. Carefully, with deep concentration, Jason would line up his hands in a prayer position placing his thumbs up against his chest. Palms were firmly and evenly pressed together, the fingers together straight up with fingertips perfectly level.
Jason had a very keen interest in spiritual meanings and rituals of different cultures ever since he was little. Jason was particularly intrigued about Ancient Egyptian and Native Indian ways. This was now passing onto Catholic religion.
The doors swung open, ‘We are ready for Jason now’. It was like time had stood still and that moment was all there was. I felt like I had dropped through the floor. It was the lead anesthesiologist that we had spoken with earlier that had now returned for Jason, accompanied this time with a couple of OR nurses. He was really nice and gentle with Jason. He had previously explained to me about Jason’s set up, the intra-arterial line in the wrist artery for continuous blood pressure monitoring during the surgery, and a deep IV line “central line” for more detailed monitoring of the cardiovascular system. I gave Jason a hug and kiss telling him I would see him soon and the rest of the family are waiting downstairs and we will see him when he wakes up.
The double doors were propped open and Jason gave me a final wave as he was wheeled around the corner. Standing there numb with no desire to move, my eyes through the blur recognized a movement in blue. I sensed a familiar stature coming towards me. It is Jason’s vital team member, the man he is depending on, Dr.B.
I walk up to him and firstly exchange in silent language. I then asked him did he have his run this morning. Yes, he had. That’s good said I. I knew this was difficult-could it be that the next time we meet like this, would be to tell me bad news about Jason. I told him that Jason was in the best hands and whatever happens, risks were there for anything to happen/go wrong, that I knew this,and I was ok and aware. I wanted Dr.B. to go in without any ensuing guilt of responsibility if the unexpected happened. I could see the concern in his eyes but he oozed confidence and he was our man. Acknowledging that yes I was carrying my cell phone, I wished him a successful surgery… the doors began to close. Surgery was scheduled from 8am until 3.30pm. Pacing was about to commence.
Three signatures… surgery booked.
All results were in- MRI results and results from the Neuro-Ophthalmology Clinic at the Ottawa Eye Institute. Jason was very familiar with the Eye Institute and over the past two weeks it had been a revolving door for us with consultations and tests. We were very fortunate to have this world-class facility available to us in our own back yard. At one of the appointments, I noted that his left optic nerve appeared pale and I knew that this meant his blood supply to the nerve was already being compromised. My recurring nightmare of Jason being in the car with me, not hearing/seeing resurfaced in my mind. NF2 was trying its damnedest to make this happen and I was worried sick.
I was dreading Jason having to hear the news that was on its way through the door. In came Dr.B. armed with the reports. No joking about the ‘red-headed mother’ this time. Jason and I both quiet. Anticipation and fear running high. One look at Dr.B’s eyes and I knew which road we were being sent down. My stomach and heart met somewhere in the middle.
Results were not good. Worst feeling ever. There is a recurrence of the previously resected left lesser wing meningioma. A diagnosis of an en plaque meningioma had now been made. This is a carpet-like growing tumour and spreads and can infiltrate bone as in Jason’s case. The recurrence had grown further with extension to the nasal cavity and the orbital cavity. Total removal of this type of tumour is difficult due to its extensive bone and dural (outermost, fibrous membrane covering the brain) involvement. As a result, these tumors have high recurrence rates and normally are followed up by radiation treatments but Jason by the age of 23 had received his lifetime maximum dosage of cranial radiation, so this option was no longer viable. Diagnosis of optic atrophy had been made by the Neuro-Opthamologist in her report and evidence of vision abnormalities were mentioned. Jason burst out “I don’t want anything to happen to my eye.” It wrenched every cell in my body, seeing the panic in his face. Jason told Dr.B. that he wants an operation, to get these tumours out. Dr.B. said that he knew that Jay was totally on board and ready to go but he needed to explain to Jay about the risks. I was so grateful by Dr.B’s way of speaking to Jason with this terrifying news. Dr.B. was fond of Jason ‘a trooper’, but he also knew that Jason was very sensitive and easily panicked and that was the key to Jason, not to cause him panic if at all possible. To ease in was the best way to aid Jason. He explained to Jay that the risks increase with each brain surgery and that these are very serious major surgeries. Dr.B. fully acknowledged Jay’s concern about his eye and in a compassionate manner, agreed with Jay that he doesn’t want anything to happen to his eye either. But also he doesn’t want to make things worse for Jay as a result of an operation. A risk to Jason’s speech was a very real possibility and concern, to which Jason bravely replied, “I can get speech therapy.” I could hear my breath gasp. See Dr.B’s eyes widen. Nothing was impossible in Jason’s mind and he wanted this operation. Jason had to understand that while in surgery there was a possible chance that the blood supply to the nerve could get cut off and that he would lose his sight from the operation itself. Anything could happen. Jason asked the question of what happens to my eye if I don’t have an operation. The answer was, if nothing was done.. no surgery at all, then Jason would eventually lose his sight. Not sure when, but probably within a reasonably short time since these tumours were positioned above his optic nerve and third nerve, and they were growing. This was unthinkable, Jason depended on his sight; to stay upright, to help with poor balance, to navigate his way around. Jason was also lip reading due to severe hearing loss. Without sight, Jason would not be able to function. My whole being was in turmoil for Jason.
I couldn’t shelter Jason, couldn’t make things better…such a lack of power and so helpless, the fabricated feeling of wanting to make this all go away was suffocating me. There is nothing worse than watching your children suffer. It evokes every emotion, sensation and nerve in me. Thankfully the non-emotional, logical brain kicked in to save the day and took over; fierce advocate, mother, brain, surgery, life. I jump back into my role.
I could tell that this was a difficult appointment for Dr.B. also. Here was this amazing brave young guy sitting in front of him whose brain he knew well. Jason wanting the pen to sign on the dotted line. Assuming and depending on this man to go into the OR with him to take out the tumours but first and foremost, for nothing to happen to his eye. As Dr.B. was showing me the MRI comparisons Jason was already suiting up for his next battle. There was no discussion as far as Jason was concerned…book the surgery. Jason understood the risks and I would have done the same thing. The risk of surgery was worth the gamble to save his eye, as the alternative was a definite loss of sight. This loss would be instant. It could happen anywhere, anytime. There would be no warning at all. One moment he would see and the next moment his world would be dark. This was not an option.
Pen in hand, we all signed the surgery papers. Surgery was booked for Jan.20, 2011
MRI results this afternoon.
Usually Jason was up by now. For close to an hour, I had been back in the house from an early morning start in the barn. Taking advantage of this rare solitude, I sat pondering life over a bowl of cereal and a coffee. I was feeling numb. I knew this day could present a fork in the road- we could continue down the same bumpy road or be sent down the alternate road with a dangerous steep slope. I sat there closing my eyes for a moment, just wanting to switch off and escape for a moment, but my mind selfishly had other plans. It dragged me to the recent episode of Jason having a rare tonic seizure. Jason and I on the floor, Jason rigid, nothing moving, eyes frozen open, unable to find a pulse I was sure the brain stem had shifted and he had died in my arms. It was the most horrific experience. The ambulance came; he had weak vitals and was rushed to the closest hospital. Before I had come back to my present state of sitting at the kitchen table, I was racing up the stairs, now standing outside his door trying to hear over my rapid breathing some kind of sound…holding my breath, thinking is he alive? Maybe he didn’t sleep well last night….I should let him sleep; we have our appointment for the MRI results this afternoon. Did he have a seizure in the night and his heart stopped. Hand on the door knob; about to burst through his door, I hear some movement. I stick my ear to the door and yes, he is alive, and he is getting up. OMG! how crazy of me to be thinking like I did but that was the reality of it all. Many, many, times I have stood over Jason sleeping on the couch, watching, making sure his rib cage was heaving up and down, just like I used to do to each child when babies sleeping in their crib. I hear Jason coming down the stairs. Of course I have already blasted back downstairs and am sitting at the kitchen table trying to regulate my breath, pretending that I have been having a leisurely laid back morning leafing through store flyers. Jason approaches me and we greet each other with “hello” and a smile. I call him sleepy head and he gets a glass of water to take his pills. I head upstairs to gather some laundry and I hear a big bang. I drop everything and fly down the stairs. It always amazes me how I haven’t fallen as I hold onto the bannister and sort of glide over the edge of the carpeted steps arriving in a flash at the bottom. Jason is at the stove with his back arching, arms flailing, frying pans and a pot crashing to the floor. Pills are everywhere and he is on the move, still in the thrashing stage of the seizure. I try to guide him around the fallen pots and utensils with pills scattered all about. He had obviously had his pill box in his hand when the seizure struck. The box has a week’s worth of pills divided into daily am and pm compartments. Jason takes 4 different types of pills, a total of 14 pills per day. He is wearing his summer sandals that are not ideal footwear at the best of times for Jason and are hazardous in a situation like this. I use all my strength to move his resisting 160 1b body away from danger. Within minutes, the longest four minutes , the extreme physical part of the seizure quietens down. He is now very confused.. wanting to know where all the family members are…doesn’t know if it is am or pm… what is all that on the floor…did I take my pills? I didn’t know if he had taken his pills before the seizure. Looking for clues on the glass of water…any lip marks ,any obvious water level changes, trying to determine if enough water had been drank to swallow his pills. I couldn’t be sure. The only way to be sure was to gather all the various pills off the floor and see what was missing out of the pill box, and go from there. Pills were scattered everywhere. It was a tad exercising for my brain to do the math but his am pills were amongst the ones on the floor. Jason was sure he remembered taking them. I showed Jason my math equation which we kind of chuckled about, he agreed and took his morning pills. And that was the start to Jason’s day. Within a couple of hours we were in the truck heading to the hospital for Jason’s MRI results.
Jason’s 29th Birthday
An MRI was booked. Last week we had celebrated Jason’s 29th birthday. Jason loved birthdays, not just his own, he loved everyone’s birthday in his family. He loved the anticipation of presents, who was coming? what food were we having? and the best part, ‘the cake’. Jason’s youngest sister Kelsey is an accomplished baker and Jason loved her baked cheesecake decorated with fruit in a glaze; such an incredible taste and a work of art. Jason’s face would light right up when Kelsey placed the cake dotted with glowing candles down in front of him. It was a special time. Thankfully on this July 12th it was a good day for Jason and he was full of joy!!!! So was everybody else!!
Jason’s daily seizures, headaches and dizziness had worsened. Jason now needed lots of help. It was very difficult. Seeing this decline caused such a sense of uneasiness that was with me everywhere and it wouldn’t go away. I was so afraid for Jason. Jason was getting words mixed up or else couldn’t remember what things were called-not all the time but it was happening, whereas 2 months ago this was not. Jason was displaying episodes of paranoia and obsessive behaviour which was new. Jason’s questions about anything and everything were constant to me. If there was a blessing in all of this, if you could call it that, it was the fact that Jason didn’t appear to be bothered or worried about any of these issues. Of course the key was not to react and gently help him out, like ‘no big deal’, as we would recall the words for him. Jason would kind of giggle at times with us in this situation which was a welcomed lightness at this time of anguish. Jason just carried on not concerned over what was happening…this wouldn’t have been the case before. It was exactly as Jason’s Doctor had told me four or five years ago “This will be hell on you Fiona watching this, but as time goes by Jason’s realization of what is happening now, compared to before, will become less.” He was right; this is exactly what was happening.
When it was a good day for Jason, when headaches were kept at bay with Tylenol 3s and Advil and he wasn’t too dizzy, Jason would seize the day and want to make the most out of it. This meant getting off the farm and going out into civilization where there were lots of people, cars, and stores. Places of potential danger. Stress of keeping him safe in a seizure. Jason would love to go and spend time in his favourite stores. The clerks knew us well and Jason loved to have a little chat with them. They were always so pleased to see him. This was a good feeling for Jason and for me too to see Jason in this way. Jason was so courteous to strangers, insisting on holding doors open for people no matter how he felt. When we would go out on these little trips there was nearly always a sense of humour present, some joking and laughter in the truck while ‘Mom’s Truck Tunes’ cd was playing. Jason had compiled 4 cds of our favourite rock tunes, ‘Mom’s Truck Tunes Volume 1 through to 4’. Once back home he would usually like to watch the Discovery Channel while playing on his laptop. He would order up his favourite sandwiches….a pb and j (peanut butter and jam) or a pb and b (peanut butter and banana) usually accompanied with a glass of milk and 2 Tylenol 3s.
Jason would normally then have a nap lying on the couch and that is when I would dash back out to the barns to do as much work as possible before he woke up. If Jason had not yet had a seizure that day I was very nervous about leaving him unattended. In a heightened state I would muck a stall, then run back to the house, peek in the window to make sure he was still sleeping and if so, run back to the barn andmuck another stall and so on….
Seamus, our golden retreiver, thought this was great fun!
Striving for employment.
Resume and College diploma now in hand, Jason was determined to find a job. With a list of printing businesses and Jason’s portfolio carefully placed on the back seat, we climbed into the heavy duty 4×4 truck and set off for the city. Internally I was very nervous about this as seizures were increasing in number and intensity, changes were happening, and I was really worried. Keeping this locked within, I looked over at Jason with a smiling excited proud face to match Jason’s face as he looked back at me with a beaming smile. Such a wave of emotion. There he sat so smartly dressed clutching his file wanting more than anything to have a job like a regular guy.
Jason thrived when earning a paycheck. Beginning in his early teens Jason overcame challenges to hold a job in a sports store, a restaurant and then an animation studio. Some of Jason’s summer jobs had been labour intensive; dirty sweaty work, sweeping parking lots and hauling around wheelbarrows brimming with bricks and cement. Jason insisted on doing these jobs despite having just completed five weeks of cranial radiation. How he managed to push that heavy wheelbarrow around in 30C degree heat with depleted energy, poor balance, and generally feeling ill, was a witnessing of unsurpassable determination. As a Mum, to stand by and watch this child battle through his day wrenched every part of me but the stamina and perseverance that Jason had was a force I knew to leave alone, it was his life force. I knew that no matter what was happening, my role was to provide the strength, optimism and encouragement that Jason looked into me for and so at 5am with a big smile I would wave bye to him and wait for my phone to ring. Jason’s power of his mind and determined inner strength was extraordinary …the way he was able to overcome the effects of his illness until he could no longer was the force behind me.
Approaching the city, time was running out for me, I couldn’t put off the inevitable any longer. With my queasy stomach in a knot I had to bring up the dreaded word ‘seizures’. I’m sure Jason was waiting for this conversation since we had covered everything else on the drive in and maybe he was hoping it would go away. I guess by not mentioning it and ignoring it just for a little while, we could pretend it wasn’t there. But the blatant reality was,the unwelcome presence of these looming seizures was very much there, and they came with Jason. I delicately told Jason that when speaking with the manager it was best to be up front about his epilepsy at the beginning as it would be unfair to the business upon hiring him to not be aware of this until a seizure happened. Understandably he was extremely frustrated. He really hated the fact that these seizures were in his way again. Having to do this really tore into me but Jason did agree and understood the liability. Jason asked if I would tell them about the seizures and so upon meeting the various managers Jason would give me the floor to do my part. We knew that Jason’s epilepsy had a high probability of being a deterrent, as this had happened before. At the College’s Open House Jason’s work had caught the eye of a successful large printing company. They had approached Jason which was so exciting and they were very interested up until they became aware of Jason’s epilepsy.
Climbing in and out of the truck about 6 or 7 times we worked our way through the list. The Managers at each and every place were impressed with Jason’s portfolio which was wonderful for him to hear. I was thankful how extremely gracious they were to Jason telling him that if any positions became available they would let him know. Upon the closing of conversation they would meet my eyes and silently agree that this determined young man that stood before them was a beacon of profound human spirit. They appeared to be in awe; here they were just going about their day, just a regular day and then Jason appeared wanting to work despite obvious challenges from illness. In this silent exchange I would get the feeling that they were glad that we walked through their doors that day, to have met this inspirational force. As the doors closed behind us, the twinges of sadness settled deep in my heart as I knew what mountains Jason had to climb to be able to walk into those businesses on that day.
Jason was becoming disillusioned; checking every day online for jobs and making calls and nothing…
I took Jason to the Disability Support Work Program office and of no surprise Jason qualified for work placement assistance. This was a big step for Jason since he had always refused any special help always just wanting to be like a ‘regular’ person. Thankfully Jason warmed up to these people once he realised that this was his chance, they were on his side. They would approach businesses on Jason’s behalf and find an employer that would be comfortable with Jason’s epilepsy. It was a wonderful organization and Jason became at ease with them. They had also accepted my offer of shadowing Jason at a job or hiring a medical person to be with him if this would improve Jason’s opportunities.
Jason was discouraged. The only jobs offered to him were menial jobs… such as stocking shelves or stuffing envelopes. Hearing that and knowing Jason had heard that, caused everything inside me to drop and sink;I was sure my heart cracked. Jason dipped his head shaking it in disbelief. How brutal. I could not protect Jason and buffer this harsh reality. The truth was now staring Jason right in the face.
Little did we know while sitting in that office, Jason was soon to meet his biggest challenge. NF2 had succeeded in rearing its ugly head again. The focus on the job therefore promptly faded into the background.
Jason’s Ottawa Medical Teams
We were very fortunate that Jason always had the best of the best…’The A-Teams’. From the Children’s Hospital Neuro-Oncology and Neurosurgery team…. to the Radiation Oncology team at the Ottawa Regional Cancer Clinic….. to the Radiation Therapy team and the Neurosurgery Team at the Ottawa Civic Hospital…. each one of these places becoming like a second home to us. Everyone was in Jason’s corner and made a difficult journey as best as it could possibly be. The combination of the team’s expertise and compassionate approach with Jason was admirable. Jason felt very secure and at ease with his Doctors, often exposing his infectious sense of humour to them. They all would quickly realize that Jason didn’t come by himself, he came with his Mum! The Doctors accepted and recognized my role and I would become part of the team. I am forever grateful for that.
Jason’s case was very complex. At age 21, Jason was referred to Dr.B’s office..the Chief of Neurosurgery at the time. From the very first meeting, I knew that this brilliant neurosurgeon was Jason’s ticket. Jason also felt the confidence of Dr.B. right away but most importantly Jason ’ liked the guy’. I know that Jason would not have fared as well as he did had he not found Dr.B. and his assistant Sarah. Jason’s trust and fondness for them both was a huge factor. They became part of our lives over the nine years . I have the utmost respect and regard for these remarkable people.
No award or medal would be worthy enough to acknowledge what Sarah did for us. For me, Sarah was my lifeline. Unbeknownst to her, she was one of the most valued persons in my life. I told Sarah many times that she was like my angel, always there, offering to help in any way she could. I could not even try to imagine how it would have been had Sarah not been there. There was a mutual respect for one another. Sarah understood that yes, I was first and foremost Jason’s Mum, but I was also Jason’s advocate and I had made it my mission to know as much about NF2 and brain tumours as I could to ensure that Jason had the best treatment possible. Sarah trusted my judgement, would go to bat for me and speak to Dr.B. about my concerns. Sarah was very professional and efficient, always promptly answering my emails about Jason and I never took that for granted as I knew how busy she was. Over the years Sarah remained constant and I was comforted and reassured knowing that Sarah was at the end of my keyboard. It was as if I was alone standing on a stage but right behind the curtain was Sarah and Dr.B. ready to assist when I needed their help. It was such a comfort knowing that they were always there in the background.
Jason had a special relationship with Dr.B. They would joke at times and Dr.B. would call him Jay, which only a small number of people had that privilege. Jason loved it when Dr.B would say “Well Jay, I see you still have the same red-headed mother”. Jason would grin and shake his head playing along. In a typical appointment, Jason would sit beside me sipping on his diet coke while Dr.B. would be showing me the MRIs on the computer; the tumours proudly showing themselves like illuminated beacons. Jason had all the confidence and faith in the world that these two people in front of him looking at the pictures of his brain would sort it out and let him know if anything was close to his seeing eye.
Jason was always very positive and brave going into the OR. Jason had unconditional trust in Dr.B. Jason knew that this man was on his side and would do everything in his power to help him. Jason would also be at ease and reassured as long as I could stay constantly at his side until the transfer to Dr.B. I was permitted to accompany Jason as far as the other side of the OR doors where Dr.B. and his surgical team would take over. This made all the difference for Jason. I was so thankful for this.
With each additional surgery, risks of morbidity and mortality were raised. There were only so many times you could safely dip in the well and they had to be chosen carefully.The whole approach with Jason was to put out the fires as they happened and to decide at what stage to do this. In Montreal it was said to us “no more surgeries for this kid, he is going to run out of luck.” I greatly appreciated that this was the safe conservative approach and maybe this would be the case for a ‘regular’ patient but this was Jason we were talking about. This would not have been acceptable to him, he had life to live no matter how great the challenge. I am sure there was luck involved at times but Jason had the courage of a lion and it was contagious to all around him.
Jason went on to have four subsequent brain tumours removed by Dr.B.
Dr.B. told me that Jason’s positive attitude going into the surgery was a key part of the outcome; it wasn’t just the skills of the neurosurgeon and team. It was evident to me that Jason and Dr.B had a partnership in the OR, each one relying on the other one. This extraordinary trust Jason placed in Dr.B’s gifted hands enabled Jason to stay in the stream of life and to do the miraculous feat of striding across his graduation stage.
Behind the hospital doors.
It was clinic day; a hive of activity, high energy, white coats bustling in and out of the examining rooms, children of all ages up to 18, parents (mostly mothers) and lots of support staff all with a genuine demeanor. This was a haven, all of us united by a common thread.
Jason would be examined, weighed, measured, blood work done, and a count taken of his café-au-lait spots (a possible indicator of Neurofibromatosis). We would then wait for Jason’s name to be called by his Oncologist and Neurologist. We would be at the clinic for most of the day. Jason was playing a checker game with his new clinic friend. His friend was receiving chemotherapy while they played the game. He had an assortment of lines connecting him to the various drips. The imposing IV poles were lined up beside them almost like they were peering down on the game. Jason and his friend were playing as if they could be anywhere, just like two regular healthy boys on the other side of the doors would play. Jason appeared to not notice any of this; the tubes, the wires, the beeping monitors, the main line giving his new friend a chance at life. What was wonderful was that Jason just saw a boy, his new friend, someone who also liked to play checkers.
As I nervously waited for Jason’s name to be called I made eye contact with some of the other Mothers. I was searching in them for something familiar, a sign that they were feeling like I did. I then realised that they too, were probably just like me. On the outside they appeared to be poised and brave ready to deal with what will come next, but inside there is such a churning of fear for their children. I am amazed how we can keep going with a certain amount of normality and control, when our whole world has such a threat to it. My thoughts were halted by the nourishing sound of children’s voices and laughter. This is where we get it from; such brave little souls, such troopers. The resilience of these children and their joy of living despite the horrible procedures they had to endure, was incredibly humbling. When a child having a spinal tap behind a closed door could be heard crying, it was heartbreaking for the Mothers. The children just kept playing, not displaying any reaction to this. It appeared as if they had accepted that this was their world. The head of Oncology once said to me, “These children are born with halos over their heads.” She was right. These children are special children. I was changed on some deep level that day.
Over the many years on Neurosurgery hospital floors, I was privileged to share intimate conversations which would greatly affect me. It was as if we were both there at the same time to come together and have this profound sharing, and then forever disappear. We were strangers with exposed souls, connecting for a short time to help one another. These conversations have stayed with me.
A man whose life was ‘normal’… a career, married, young children, had just been told that he had 3 months to live. Sitting on a chair at the bottom of his bed, I compassionately listened to him. He was so raw and emotional. He was telling me how much was left on his mortgage, so worried about how his wife would manage, but as he was saying it, he realized in that very moment, that it didn’t matter because it would soon be paid off because he would be dead. The stricken look upon his face as he realized this halted my breath. He told me how ironic it was that just last month he was panicking about trying to make the mortgage payment, and now, the whole thing was going to be paid off. He was crying and trembling. He told me about how worried he was for his oldest child, a boy, and how scared he was about his children getting the same illness. He didn’t want to go to another hospital like they were planning, he wanted to go home and die there, to be with his wife and children. I was moved beyond words. I had never been with such raw emotion as it was actually playing out. We were strangers but for some reason this man trusted me with his almost primal emotion and anguish. When I returned to the hospital the next morning, he was gone. I truly hope that he got his wish to go home.
I felt extremely privileged and changed by meeting this man.
My teeth were the receivers.
As I lay reclined in the dental chair hypnotized by my mouth’s throbbing pulse, I closed my eyes and despite the pain competing for my full attention, I felt a sense of ease wash over me. I realised what this was about, this was a pause for me from the overwhelming responsibility and worry that I had now left behind at home. No one could get to me for an hour or so. I really didn’t care what the dentist had to do, as long as I could remain in the chair. It was as if I was on a remote island, reclining in a deck chair on a warm sunny day but yet so far from the truth of reclining in a dental chair with the heat and brightness coming from the overhead dental lamp. The fact that it didn’t matter at all, that the dental chair was just fine, impressed such a feeling of relief over me.
Peering at the x-rays the dentist shook his head in disbelieve and with a compassionate look on his face confirmed to me ‘another root canal’ The ‘USUAL’ ; a prescription for antibiotics and pain killers, an appointment made for my root canal(my 9th) lastly followed by an appointment for my crown fitting. Of course, that was if I had a horse to sell. This scenario provided some laughs in the dental office who by now were beginning to feel like extended family. All of my crowns had names; each one named after the horse I had to sell.
It was a sure thing that I would have a root canal when Jason had surgery, radiation or any trauma happening. My dentist had never seen such a case as mine. There was no logical explanation for so many root canals as my dental hygiene checkups were unremarkable. He knew of the enormous stress I was under and said “this is just the way your body deals with it and your teeth are the receivers.” . My teeth for sure were the radar of my internal stress. My teeth paid the price for years of extreme turmoil and they still do to this day. I told my dentist that I definitely deserved a plaque (now there’s a pun) on the dentist’s wall and a gold name plate on my chair that I figured I now owned. My dentist was so good to me. When I was at the Montreal Neurological Hospital with Jason I had a terrible flare up. All of my teeth were hurting and on edge, it felt like an electrical current was running through them along with throbbing and inflamed gums. Of course it was a weekend but thank goodness the dentist had kindly given me his home number before I had left for Montreal, just in case I had an emergency. He called in a prescription to Montreal right away to get me through until I could get back to Ottawa to see him and Yes! Another root canal!!!!!!! It was such a comfort knowing that he would help me and make life easier for me. Of course after a recent episode of 3 root canals in a row he knew what the routine was with me. My teeth were so connected to my state of well-being.
My mouth now is an assortment of crowns, gaps, and bridges with a few original teeth remaining! My dentist has since retired!!!!!
‘Jason’s Moment’
The lights dimmed. An enthusiastic announcer’s voice booms out” I am pleased and honoured to present the Print Media graduating class of 2009.” We see to our left a seemingly endless line of graduation gowns cascading down the aisle heading down towards the grand stage. My emotions accelerated. We are actually here and Jason is one of the gowns.
Perched on the edge of our seats we are desperately trying to search out Jason. We have been seated in the middle of the row about half way up the auditorium so our location combined with the dark and everyone dressed the same was making it hard to find him. Madly scanning the group for his height, his unsteady gait….my worry takes over. Where is he? Is he all right? Of course my mind had already dragged me through every type of scenario that could happen and figuring out the fastest way to get to the stage which involved climbing over people and stepping on heads that were in the rows between me and my son. Thankfully, one of the few times I would be thankful for a seizure, Jason had already had a seizure about an hour before we had left home which was the biggest relief to have it out of the way but we all knew it wasn’t totally impossible for him to have another seizure especially with this type of stimulation. The girls exclaim “there’s Jason!!!!” OMG I see him. I thought my heart was going to burst. The amount of love and compassionate energy coming off our four chairs would move mountains. Jason’s name was next. He appeared at the far right of the stage waiting to hear his name, the cue to start the long walk across to the far left side of the stage. Jason looked so incredibly handsome, his stylish new clothes and shoes poking out from underneath the long gown. Jason’s name was called. Holding his head up focused ahead on the diploma in the President’s hand at the far side of the stage Jason set off. He walked with such purpose and poise across the stage like I had never seen him walk….striding out, so balanced and straight, passing the rows of College Professors and dignitaries. OMG I was almost in shock seeing this play out in front of me. Jason’s neurosurgeon said it best ‘this was his moment’ and it most definitely was. Nobody in that auditorium knew what this amazing young man had to overcome to be up there; starting College in 2002 having to resign time and time again due to brain surgeries and radiation, nothing stopping him, never giving up. Now here we are in 2009 and Jason is on a graduation stage. My emotions are so powerful, hard to describe. My love and admiration for this child resists all confines of language.
The forces of Jason’s illness were present daily: nausea, sometimes vomiting in the truck on the way to school, headaches, cranial pressure, seizures, weakness, tiredness, pain, debilitating dizziness but unless he couldn’t walk he would insist on me taking him to school and the power of his mind with my help carried him to class. The heart wrenching times when Jason could not make it up the College entrance steps was when Jason knew he was defeated that day “Take me home then Mum.” He would be so frustrated saying “if I was just feeling sick or had headaches I could go but the dizziness makes it impossible to do anything.” I could never not drive Jason to school as much as I knew I would be bringing him back home right away or shortly thereafter, this is just something I could never do. The fact that Jason, despite such forces against him, wanted to try to go was the fire and spirit of his soul and this could not be extinguished in the slightest. The spirit and drive Jason had was like no other. I was so proud of this amazing young man up there as he quietly exited the stage, diploma in hand.
A peek in the window of my mind.
Feel like I’m losing my way. Pressure and fear is unrelenting. All senses heightened. Anxious, helpless, mind racing, heart pounding. Just want to sit in the middle of a field and wave a white flag.
Floundering, fearful of what may happen tomorrow. Will it bring joy or sorrow? Lingering scent of sadness is always with me. It takes exceptional friends to stay close.
5am- in the barn. Temp. -28C with a severe NW wind-chill. Horses have to be fed, blanketed etc. Jason is inside sleeping. I’m worried out of my mind …is he ok?…has he woken up?….has he had a seizure?….has he fallen?. I feel sick. It’s insane but there is no way out.
Grave danger and overpowering worry of the upcoming surgery is suffocating me.Knowing what could happen to Jason evokes a horrible picture.Total panic. My body and mind feels ripped open and rearranged. I’m on the River of Fear…some days the boat is afloat, other times it is capsizing and this is one of those days.
I hear a muffled thud from upstairs. Seizure! Adrenaline skyrockets. Warp speed up the stairs I burst into his room relieved to find him at his computer, headset on, whistling and humming with his shoes thumping to the beat.This is the thud I heard. As Jason removes his headset I hear Eric Clapton blasting out ‘COCAINE’!! “Oh hi Mum” a big smile across his face. This smile flows into my heart. I respond “ Oh hi love, just thought I would see what’s going on” acting nonchalant while reining in my adrenaline. We had a little chat and I let him get back to his music. Jason’s spirit never ceases to amaze me and this inspires me to stay brave. There he is up there playing his computer games listening to music and smiling and he has the biggest hurdle of his life coming up. Everything comes back into perspective.
My recurring dream happened again last night. Jason is in the back of the car, we are driving past Qualicum Beach. Jason is frantic not knowing where we are, he can’t see, he can’t hear. I quickly put the windows down he smells the sea air and knows he is by the ocean. This would affect me for days. There are NF2 cases with complete loss of their hearing and sight and that is my greatest fear. As it stands now when I walk directly beside Jason I have to decide does Jason need to hear me or see me. If I walk on Jason’s right side he can’t see me. If I walk on Jason’s left side he can’t hear me.
Jason’s epilepsy surgery
Jason went into the OR at 9.00am. Jason was calm, brave and ready for this surgery, this was going to make a big difference in his life.
My cell phone stayed clasped in my hand constantly checking it. The neurosurgeon wanted me to carry it in case there was a problem, a decision to be made. The waiting for news good or bad was brutal. The fear of not knowing what was happening was overwhelming. With my whole being in an accelerated state of anxiety the only way for me to stay together was to pace back and forth, always sticking close to the elevator where the patients would come up from the OR. Everyone’s eyes were constantly fixated on the floor numbers above the elevator door awaiting their loved one. When the elevator floor number would light up everyone jumped up hoping praying that this is theirs, the doors open it’s not Jason, one other family is overjoyed. Where is Jason? Is he alright? My mind would be going crazy imagining everything that could go wrong. There were five or six other families in the ICU family room which slowly over the day dwindled to just two of us. The elevator floor number lit up. As I hear the elevator approaching our floor I hear many voices and a heart monitor, a steady strong rhythm..beep..beep..beep..I knew without a doubt that this was Jason. The doors opened, the best gift imaginable, it was Jason. He was surrounded by a full team of nurses, anesthesiologists and Drs. Jason was ok and doing well considering the ordeal he had just been through. OMG that emotion and feeling in my heart, so many layers to it. Such intense relief, joy and worry.
It was now 5.00pm. Jason had been in the OR for 8 hours. The main man, the hero of the day Jason’s neurosurgeon was on his way. As he approached I met his eyes looking for signs of concern. This unspoken exchange expressed in the eyes and face between the mother and your child’s surgeon is a language all in itself. I was really overwhelmed and indebted to this man as we shook hands, the gifted hands that had performed a miraculous surgery and returned Jason back to us. It had been a challenging long surgery. He had removed a lot of scar tissue and some nodules which possibly were residual tumour since they had a vascular component to them. The issue of pressure changes and swelling was managed, they didn’t wake the tiger !
Jason was now set up in the ICU directly in front of the nurse’s station. Jason sensing we were there opened his eyes and in a slurred groggy voice said “I’d like a Tylenol and a Coke please?” then fell back into his deep drug induced sleep. That was the best thing and so funny. Right away we knew Jason was ok. This was the Jason we knew. The nurses questioned me what does Jason need? I told them “a Tylenol and a Coke” they laughed and right away they knew what an amazing special patient this was.
I didn’t feel well at all. High pitch ringing in my ears, a cold clammy sweat, ‘I think I’m going to be sick’, I think I’m going to faint’, the mad anxiety of finding a vacant chair as I could feel myself starting to go. Of course nurses had spotted what was happening before I actually met the floor. A chair was slid underneath me, a paper bag put in my hand, a cold cloth on the back of my neck and my head down between my legs. Here I was in the middle of the ICU amongst all these critically ill patients and I had my own small team of nurses for 5-10 mins. I felt bad about using their valuable time but I guess a Mum on the floor is a real liability. They said ‘it is the shock of seeing your son in this state that caused your body to react this way.’
Arriving back the next morning I couldn’t wait to see Jason, I couldn’t get to his station in the ICU fast enough. Eagerly anticipating Jason I was met with an empty space. I sank. I will never forget that feeling. A nurse appeared “Jason has been moved. Jason did so well last night so he has been moved to the less critical part of the ICU” pointing to the other side of the room. I’m sure my face said it all as she stroked my arm. “Don’t worry he is fine”.
There he was, he looked so young and angelic just quietly lying there, no sounds of fussing or moaning, sheets still smooth and straight. Jason had such a strong constitution. Even when the heart monitors were displaying raised vitals reflecting the trauma of pain Jason still would never complain. The nurses and doctors had never met anyone quite like Jason and this was where he got the label ‘STOIC’. Jason had this amazing ability to go deep within himself and to get on with the healing process.
His bed had been raised to about a 45 degree angle to help with any swelling. He looked good considering less than 24 hours ago he was in brain surgery. I survey the monitors, all numbers look good. I notice that they have removed some of his head dressing plainly revealing the drain site,a clear tube of slow moving liquid protruding out of his head. I started feeling a little light headed. I hear an alarming CODE BLUE on the other side of the room followed by a mad scurry of staff. Out of nowhere high pitched ringing starts in my ears…Oh no!!! Not again. Head is getting dizzy, Shit!!! I can’t faint now. In haste I spot a blue chair of some sort behind me, I grab it and start to collapse into it. A groggy voice says “I wouldn’t do that if I were you Mum” followed by snoring. I look and I am about to collapse into a commode ideally equipped with 4 wheels. I could only imagine the image Jason had when he opened his eyes and saw what his Mum was about to do…Mum dropping back into the commode, bottom getting stuck in the hole,the jolt setting the commode free to roll down the ICU aisle with Mum shrieking with arms and legs sticking up in the air. This scenario provided many laughs throughout the years.
It was a very hard week for Jason at the MNI but finally we were back home. Jason was resting lots and in less pain with each passing day. Since his surgery Jason had not had a seizure which was absolutely amazing and Jason was thrilled to know that. Possibilities were opening up! It had already made a difference in the family’s anxiety level.
Then a change. At the incision site Jason began to have increased swelling. I was concerned. I called the MNI and they said as long as the incision isn’t infected it is probably normal post-op. Sure enough Jason didn’t have a temp but Jason wasn’t himself and I knew with a mother’s instinct that something was seriously wrong. I took pictures of the swelling and emailed them to the Neurosurgeon. He still said to wait and see. Two days later Jason is dizzy, vomiting, bad headaches, not well at all. The next thing we are at the MNI in the neurosurgeon’s office and yes sure enough he has a CSF leak. Jason was admitted for emergency surgery the following morning. I was so scared for Jason as he was still recovering from the first surgery. Jason was in the OR for about 4 hrs. Thankfully they managed to find the hole where fluid was gushing out. They repaired the hole with a glue type substance and sutures and wrapped his head very tight. They started an aggressive course of antibiotics. Jason’s strength and tolerance was unbelievable through all of this. Jason humbled doctors and nurses over this challenging time. Within a week we were back home and I was to remove the bandages within a few days and to report the findings to Montreal. Thank goodness such a relief to find there was no evident swelling . Surgery had been a success.
Soon after Jason registered himself to start college that fall.
Jason at the Montreal Neurological Institute
Jason was now at the world renowned epilepsy center at the Montreal Neurological Institute (MNI). Jason’s neurosurgeon and neurologist were leaders in their field. I was so relieved that Jason was there. Jason liked his MNI medical team and they quickly grew very fond of him. The team in a short time got how Jason and I worked. At first they directed the questions to Jason but only to hear “You will have to ask my Mum. My Mum knows.” So soon enough the team would meet with me to discuss Jason’s case. Jason knew that I would go to the edge for him and get him the best and this took a lot of pressure and worry off him which became evident to the doctors. Of course Jason always had the final say but at least I could do all the groundwork for him. I recall in one particular meeting a couple of doctors who were brought onto the team assumed that I was a neuroscience nurse from the way I was briefing them and discussing Jason’s medical case to date. They were surprised to discover that I was a MUM and a horse stable owner!!!! I would come to the meetings armed with my detailed notes, copies of all MRIs, CT scans and pathology reports. It must have looked funny seeing me standing with them, the only one not in a white coat, looking at the images on the screen. I knew Jason’s brain images so well. They said I helped them tremendously as they took copies of my notes. It was a great relationship and Jason would grin when he saw me standing with the team and always became very relaxed knowing Mum was at the helm.
Meanwhile I had to find somewhere to sleep. I stayed at a hotel down the hill from the hospital for the first few nights but at $100 per night for a month I couldn’t stay there. A nurse at the MNI told me about a nunnery within walking distance that sometimes has a small number of basic rooms w/shared bathroom for relatives of the ill. With Jason now asleep and the nunnery business card in hand I set off to find it. I followed the little map on the back of the card. There rising from behind high stone walls was a group of imposing grey stone buildings with a spiral poking up through the middle of them. I wasn’t sure about this. I pushed on a heavy old wooden arched door somehow expecting it to be locked but to my surprise it creaked open. The buildings were cold and gray, sober in appearance with many windows which immediately made me wonder about the nuns on the other side of those windows, what an austere life it must be. There was not a soul to be seen but I felt like I was being watched. A sign that said visitors with an arrow pointed to a small plain door. It was locked. I pressed the buzzer. An unpleasant loud crackling noise followed by an elderly woman’s voice “Allo?” met my ears . I introduced myself and my situation. There was no verbal response just a loud long buzzing noise and a pronounced click. I was in. No sound just my footsteps echoing on the highly polished floor as I bravely walked down the massive corridor, still not a soul to be seen. At the end was an elevator that mysteriously opened right ahead of me. I go to Main. It was eerily quiet. Everything was so grand and elegant in religious detail. I spotted a room with the door open. I walked in. A frail woman hunched over is barely visible from behind the solid dark oak desk. I said “Hello” carefully not to startle her. She raised her head revealing a delightful glowing face framed with large glasses complete with a mass of shocking white hair. She gave me a lovely smile and a nod “Allo!!”, this was the buzzer voice! Communicating with her was difficult due to language barriers but somehow we managed and I had a room.$25 per night including breakfast!!! Plus they would pray for Jason each day!
When I got back to Jason with the news he couldn’t believe his Mum was going to be sleeping at the nunnery and having breakfast with the nuns. Jason got a lot of mileage out of this and loved telling the staff which was fun for him. This kept him amused and interested each day with my tales from the nunnery. Jason would tell me “Mum you better not try to sneak any wine in” so we had lots of fun with it which was great.
Jason was visually monitored round the clock. Jason’s scalp was covered in 25+ electrodes recording intracranial activity. Jason had to lie in bed under this observation 24 hours a day for just over 3 weeks. Jason could only leave his bed when accompanied to use the bathroom or shower. The days were very long. I arrived at 8.30am-8.30pm. This daily living was a true testament of Jason’s patience and determination. Other patients weren’t doing so well with being confined like this and would be angry and frustrated. Jason would just stay quiet, focused and positive. Jason’s medications were gradually decreased to nothing in order to see the full effects of the seizure. This was a very stressful time. It took many of us to ensure Jason’s safety. The seizures increased in number and were very explosive and extremely physical. Once enough data was gathered Jason was gradually put back on his medication. This was very tough on Jason’s system…nausea, dizziness, headaches….. Heartbreaking but I just kept reassuring him that it would get better soon as I held the sick bowl. I always had to stay strong and positive with a slight humorous lightness so Jason would not be alarmed. As long as I held this persona Jason knew everything would be ok. I could not show any sign of worry as Jason would pick that up immediately.
The team now knew where the seizure focal point was. The seizures were coming from scar tissue from a previous surgery. They expressed that the seizures were about as bad as they can get and no doubt were hard to manage. They finally understood what the family was trying to cope with. They felt epilepsy surgery would definitely help Jason but they had never had a case like Jason’s where there were existing tumours. The left acoustic neuroma causing brain stem compression was making them nervous. There was no previous data to go on. There was the added risk that while in surgery the brain pressure could change and the brainstem could shift up or down resulting in a brainstem stroke.
To not do the surgery also had risks. The unpredictability of seizure onset and lack of seizure control was a constant major threat to Jason i.e. walking into traffic. The intensity of his seizures added a very real risk of cardiac arrest due to the brainstem shifting from pressure change in a seizure so life threatening risks were everywhere. We all knew that no matter what Jason was on a mission for the surgery. Jason felt safe with the team. After speaking with Jason the neurosurgeon agreed to do the surgery. The surgery approach would be to go in quietly and slowly, sneak around the tumours, do the epilepsy surgery by removing the scar tissue and then get back out quietly and slowly, all without waking up the sleeping tiger! I had complete faith and trust in them to make the right decisions while holding my son’s brain in their hands.
Surgery was scheduled; we were to return in 6 days. Meanwhile we could go home and see the rest of the family 2 and 4-legged!
Waiting for the phone call at haying time
Hoping that each time the phone rang it was the Montreal Neurological Hospital was beginning to take its toll. Seizures were intense. Hospital bags were packed ready to go at a moment’s notice. My new contact person was trying to get an emergency spot for Jason and if a bed became available we had to get there right away since there were many other ill patients pushing on their doors, all desperate for a bed.
Meanwhile life carried on at a busy pace. The hay needed to be cut, baled, and put away. The riding arena needing to be harrowed and raked. Grass ring and trails to be mowed. Horses, as many as 30, needed to be fed, watered, checked over, stalls mucked, meet the farrier, the vet, all of it with a professional smiling face. I am FINE- fearful, isolated, nervous, exhausted.
Haying was a very anxious time for me, in fact I dreaded it. The summers were always shadowed with Is it the right time to cut the hay? The hay needs to be cut, is there a clear hot sunny 3 or 4 day window in the forecast? I found it very stressful and always a sense of urgency and unrest. Inevitably the forecast would change once the hay was all cut or a dark rain cloud would roll in and park over top of us rudely dumping the contents, damaging the hay. All hay making machinery would be out in full swing, tractors, hay rake , hay bine, wagons. Everything inside of me, every cell, was on alert to keep my son safe, trying to keep an eye on him which wasn’t always possible. The threat was that Jason could lose his balance or have a seizure in the wrong place and fall into one of the many pieces of machinery . This happened when Jason was around 13. Jason was on the hay wagon with me so that I could keep a close eye on him. Jason always wanted to help, to be where it was all happening. I turned to grab a hay bale from the mounted pile and as I turned back around I saw Jason mid step going right off the end of the wagon, free falling into the back of the tractor’s PTO system and hitch. He lay still. I hysterically screamed for help as I was jumping off the wagon but over the elevator noise Tom couldn’t hear me. Jason lay wedged between two of the metal bars, not moving. He was breathing, his body was in shock. He was dazed and confused and didn’t know where he was…..a seizure. Jason’s shoulder and hip took the impact of the unforgiving metal. It was a miracle that Jason escaped serious head injury. I remember thinking someone must have been watching over him. Jason’s head lay in the narrowest space between the bars with barely an inch to spare on either side. It was like someone had carefully placed his head down amongst this huge contraption of metal. Tom had now spotted this and raced down the elevator like a fireman down a pole and we lifted Jason out of the entanglement. Jason had scrapes and deep bruising. It was so frightening for Jason and we all were shaken for days. After seeing Jason’s neurologist the medication dosage was increased slightly.
Back to Montreal – still awaiting the phone call from Montreal another week or two had passed and no word. I was getting frustrated and upset. Then this happened: It was a typical haying day. Hot,humid, high 30s, full sun, high UV warning, my Irish/British freckled fair skin protesting, screaming against the piercing damaging rays of the scorching sun. Heavy air, hard to breathe, heart rate up. Hay chaff mixed in with sweat and sunscreen looking like a greenish mould over my skin. We had a full wagon of hay to unload to free up the wagon. Jason was in the house having a rest and I would check on him. We needed to go out to the back field to bale the raked hay before the day was over, rain was on its way. I had to operate the tractor pulling the baler and Tom with his nephew would be on the wagon stacking. This field is not close or visible from the house so I had no choice but to bring Jason with me and he would wait in the truck. Jason was up for that as he wanted to be close to where I was. The truck is a white heavy duty crew cab truck. I parked the truck in the shade under a few trees that were on the edge of the field that we were baling. Jason sat in the passenger seat with the windows down and said he would be fine. I did not feel good about this but there was no choice, the hay had to be done. Jason wanted to listen to music so I left the keys in aux position. I could see Jason from the tractor when driving towards the truck. Each time I would swing past the truck I would give Jason a big wave, smiling, appearing that all is cool with Mum and he would do the classic Jason wave and warm smile right back. Then on one of the passes I noticed that he was in the driver’s seat but still he gave me the usual wave with his heartwarming smile beaming off his face . The driver’s side was actually closer to the tractor so it made sense that he might move over. As I was coming across the field again in the direction of the truck I looked for the dazzling white by the trees that were part of my horizon. ‘Where is the white? My stomach lurches. Thinking I was disorientated with my surroundings I urgently scanned the area. ‘No, those are the trees, there are no other trees. How can this be, where is the truck? Did I have heat stroke? Was I hallucinating?’ Panic set in. I looked further beyond to the far end of our next field and I spotted a white flash of the truck’s tailgate going through the opening in the trees back to the driveway. What the hell is happening? I pushed my feet down on the clutch and brake and the force of the machinery from behind pushed and raised me up off the seat .I was standing up bracing and holding onto the steering wheel, still keeping my feet on the peddles. I slammed the PTO off. I was trying to bring this mother of a tractor and baler from 1800 rpm to zero now. Not a safe or sensible thing to do but I needed to get out of this cab right now. The thrust sent Tom flying almost right off the end of the wagon. Tom didn’t know what the heck was going on. I leapt out screaming ‘Where’s Jason! The truck! What’s happening? Who’s driving? ‘ Jason does not have a driver’s license. He has never driven the truck.
A long row of cedar trees go up the full length of the driveway making it impossible for me to see if the truck was there. I ran as fast as I could across the fields. It wouldn’t be until I got across the fields towards the house that I would know where the truck was. I was so scared as to what I would find once I got there. My mind took me to a vision of the truck wrapped around a pole. We have hydro poles all the way up the long driveway. Then my mind dragged me to the tragedy of what if the truck turned left out of the opening he would end up driving right into traffic on the main road into innocent people. I was beside myself with this possibility. As I got closer to the house I saw the truck parked in front of the house facing back down the driveway. Thank God. I see Jason coming out of the house. When I got to him it was evident that a seizure had happened as he was very confused and unaware. He told me he didn’t know why he was at the house and didn’t remember driving the truck. It was truly a miracle, once again, that he was safe. It was as if someone else had driven that truck. Jason had obviously had a seizure while he was sitting in the driver’s seat and found his hand on the keys and somehow started the truck and put it in drive. There were so many possibilities of a serious accident to Jason or to others happening on that drive from the back field to the house. Jason had to pass through other fields with ditches, fences, cross country jumps and then go up the long driveway past barns and sheds, horses, boarders, before he would arrive at the house. Later on that afternoon he had another long seizure. I was so shaken up. Then I got angry and frustrated that still I hadn’t heard from Montreal. This cannot go on. Late that afternoon I sent an urgent email to my contact with the details of the incident. I received a prompt reply: ‘That incident could have been very tragic, but then almost all of them could be. I hope that we are able to come up with a solution for Jason. You must be holding your breath every day that everything is OK. I can’t imagine’.
The very next morning I received ‘the’ phone call to confirm Jason a bed and by that afternoon we were at the Montreal Neurological Hospital.
Jason- Age 24
The 24th year of Jason’s life was one of turmoil.
It came on full blown one morning. Nothing like this had ever happened before. Jason started having extremely terrifying illusions, such as when he looked at his beloved dog and at me we appeared to have our throats slashed. Jason was absolutely terrified. It was awful. I didn’t know what was happening. Poor Jason. I rushed Jason down to the hospital and Jason was admitted for two weeks in total. Tests and MRIs were done as tumour growth was suspected as the culprit. MRIs , scans showed no significant changes in the existing brain tumours. It was a very distressing time and all I could do was to be there from morning until night(apart from going home to do horses) to be at his side to comfort and reassure. Jason would see a building and it would appear to be blown up, buildings appearing on fire, danger everywhere, repetitive disturbing words going over and over kept tormenting Jason’s mind. Jason was fully aware that these images were not real but was very frightened by the persistence and by the lack of control. It was so horrible. Drs couldn’t find the exact cause. A psychiatric team was brought in to do an evaluation and quickly concluded that Jason was not psychotic or depressed but that his symptoms were organic, an organic change in brain chemistry due to the brain tumours, seizures along with disturbances to the brain caused by radiation and surgery. Jason was given Olanzapine which helped to calm him. The neurologists suggested taking Jason off his current anti-seizure drug Topamax since this drug can sometimes have psychotic side effects. Jason had been on this drug for quite some time with no previous problems. They replaced this with Keppra. This played havoc on Jason’s body and seizures. Keppra did not agree with Jason and the disturbances were still happening unless he was sedated with Olanzapine. Jason was getting very discouraged so Celexa was added to the mix. Despite everything the sense of humour was still there. The medical team were great with Jason and enjoyed our banter. I know they were humbled by Jason.
We went home. Gradually the disturbing images and voices went away. Jason off and on would have ‘head rushes’ along with sweaty palms and racing heart rate. Right away I would think brain stem, the regulator of heart rate and breathing. My constant worry was the ever present threat of the left acoustic neuroma(hearing) tumour growing just enough to put the slightest increase of added pressure to his brain stem causing it to shift and Jason would be in serious trouble. Daily life was very difficult from early morning to late at night trying to care for Jason, 2 teenage daughters and operate an active horse boarding stable.
Jason’s seizure activity gradually worsened over the next few months.Recent EEG video testing showed very high activity. Neurologists stopped the drug Keppra and started Jason on Trileptal. His balance became very poor, sometimes falling right over and causing injury. My Jason radar was on high alert constantly. After alerting Jason’s neurosurgeon of the drastic change an MRI was ordered. There glowing on the screen was the culprit ,a new tumour, a left temporal meningioma brain tumour. The spinal tumour on the C1/2 also had grown considerably. NF2 had reared it’s ugly head again. Seizures were getting worse. Neurologists stopped the Trileptal and started Carbamazepine and Clobazam. This was the best combination of drugs to agree with Jason. Jason’s neurologist said there was nothing more that they could do here in Ottawa but recommended Jason to be seen in Montreal. We were referred to the Montreal Neurological Hospital(MNI), to the Epilepsy monitoring unit. They would monitor Jason 24hours a day for 3-4 weeks and decide if surgery was possible and safe to give Jason a better quality of life. I needed to get Jason there now. To get in proved to be very difficult, almost impossible. A limited number of beds and the waiting list was long. At the end of my long isolating laneway I sat day after day at my kitchen table phoning anyone at the MNI that would listen to me. I was fighting for my son. I jumped through hoops, hit road blocks I just couldn’t seem to get the right person who would really listen to me, to want to listen, to help…to try to understand what was happening in this little farm house day after day….UNTIL….the day I wouldn’t back down on this robot type person on the other end and to get rid of me she transferred me to this friendly helpful sounding voice. I knew I had reached the right person, the right office, the office of power and decisions. I explained Jason’s story, my worry and how it was for me and she listened.
“Jason is currently having 3 or more seizures a day. He does not have any kind of aura so there is no warning. Whilst in the seizure Jason is unaware of his surroundings and self. The seizures are very physical, arms/legs flailing and thrashing. He is not conscious of where he is walking, arms swinging out with such strength. Whatever Jason happens to have in his hands when the seizure strikes is held in a vice grip. This is very dangerous at times. I try to hold him from behind , arms around his midbody to guide him out of the way of obstacles and to hold him up if he starts to lose his balance. There are numerous times that I have gone down with him trying to soften his fall. He is a solid 185lbs and it takes everything I have got to guide him out of danger. It is insanely stressful waiting for these explosive seizures to happen at any time of the day. While in a seizure Jason has hurt himself several times in the shower by falling, he currently has bruised ribs from a bad fall last week, had swellings on the back of his head from falling back and hitting his head on the table, he has burnt his hands, while in a seizure he plunged his hands into a casserole that had just come out of the oven and the list of accidents goes on. The brain does not register anything so Jason is not in control or aware of anything. We have stairs in our house and I am very worried about him falling down them when in a seizure. We are constantly on the alert listening out for Jason and knowing where he is at all times. Jason has two younger sisters and they are constantly listening for him and ready to help. We all are. Driving, shopping, being out in crowded areas etc is hazardous. Everywhere is a potential danger for Jason and the worry and anxiety is overwhelming for the family to try to keep him safe. My hearing and intuition has become very refined and sharp. I have become acutely tuned into Jason’s way of being…his breathing, his swallowing, the sound of his foot meeting the floor, his gait and his ways. I constantly have a radar on Jason so that I can pick up when any one of these functions alters even just the slightest. This is my warning that a seizure is to start right now. This was how it is to try to keep him safe. No matter what I am doing wether talking to the girls,or friends, putting dishes away, laundry..normal house activites I appear (well I think I do!) that I am engaged which I am but I ALWAYS have an ear on Jason. There are two tracks running constantly. It is like I am running at a high frequency. After the physical part of the seizure subsides then Jason is very confused for about 20 mins. “Is it morning time or night time?” checking his watch. The brain doesn’t register light or dark. I tell him “It is daytime love, 2 o’clock in the afternoon….just after lunch”. Jason checks his watch again. “Oh, ok” “Where’s Mum, where’s Mum?” with a panic in his voice. I say “You have just had a small seizure love that’s all so if you can just wait a few minutes it will all come back to you”. Then he realises it is me, I am Mum and we both have a chuckle. Yes, sense of humour we have. Jason is always very concerned about what happens in the seizure as sometimes he would see the aftermath once he has come too and he feels really bad about it. Jason is the gentlest caring soul I know and he would be shattered knowing all that happens at times. It is a frightening feeling for Jason having no control and no recollection. I decided early on that if Jason is going to be plagued with this I will make it as least traumatic as possible so when Jason is safely sitting after the seizure and is in a dazed confused state I run around cleaning up any broken items, spilled liquids, righting up furniture etc. I have about 15-20 mins. before Jason is completely aware of his surroundings. Then everything goes back to ‘normal”.
She never interrupted me except for an occasional compassionate sound coming from the back of her throat. When I finished she was so sensitive and compassionate. She got what I was saying, really understood everything and agreed that Jason needed to be seen soon. She would see what she could do and promised to get back to me. I couldn’t believe it she was like a guardian angel. I told her so and I will never forget what she did for me through the years. After I hung up I just wept …such relief and all the frustration and fight was now dissolved. Somebody out there now knew what was happening here and was going to help us.
Summary of my life altering events
I am compelled to write Jason’s story. Jason’s constant strength and courage, wonderful dry sense of humour, positive attitude, and a zest for life despite the forces of NF2, is so inspiring and continues to inspire. My story as Jason’s Mum for other Mothers (parents) struggling with how to get help for your child who is ill with brain tumours and uncontrolled seizures. Receiving a diagnosis of a rare condition called Neurofibromatosis 2. Obtaining an unofficial degree in neuroscience. The difficulty in finding the right medical Drs for your child and the shower of white light that comes about when it happens. Family life. Two younger children to nurture and protect. Staying brave for all your children. Marital strain. Trying to keep the home happy and light. Working. Operating a horse boarding stable . Exhausted. Trauma of walking down a train track in the bitter cold amongst grey desolate woods firstly hearing the hissing of the smoldering wreckage..into my sight is the shocking stack of burning mangled train cars that Conor, my brother, my only sibling horrifically died in. My Mum severely traumatized. Becoming your ill child’s advocate, friend, confidante, caregiver and protector but most importantly a mother. Marriage crumbling. Being at Jason’s side through nine brain surgeries, four full courses of radiation therapy…25 treatments per course. Jason defining stoic. As I write this I can hear the double doors slam shut and on the monitor watching the red line intersect his brain, Jason attached to the machine by a metal frame clamped to his mouth. Bravely enduring the suffocating feeling of the facial mask used to secure the head for stereotactic radiation. His will and determination to get back to college to complete the one year course, that due to brain tumours rearing their ugly heads, took 7 years. To never give up no matter what. The constant pressure on me to keep an upbeat positive exterior no matter what, while inside I am bubbling up with worry, sadness and so much fear. It was my mission to carry the stress and worry for my son and allow him to live as normal a life as possible all the way through, and I am relieved that as much as I know I was able to achieve this. No idea what lay ahead. Two and a half years ago Jason died. At that very moment ‘I’ was no longer. Numbly existing on my bedroom floor curled up tight under the extreme grips of grief. How I got to here from there I am not sure. Worried for my beloved daughters in their extreme sorrow losing their brother. Trying to stay strong for my precious girls. Suffocating. I didn’t know any other life than to care for a child and in the past 10 years of Jason’s life caring for him from morning until night. I knew no other. Amputated..lost. Closest to insane???? Sent to the edge. Writing.. my fingers wrapped around a pen hearing the scratching mark watching the pen move across the journal page back and forth leaving a mass of words behind…The story of how yoga and meditation threw me a lifeline when I was drowning. With the support of my daughters and a few close friends I joined a housesitting company in order to get far away and exchanged pet/house sitting for a place to stay and arrived in Ireland last Sep. Many beloved 4-legged friends made. I was led to places of such beauty and serenity that touched my soul, from the Wicklow Hills to the forests and lakes of Roscommon, to the Cliffs of Connemara, the beaches of Mayo… Mindfulness and meditation retreats. Reiki Foundation of Ireland certificate. Teachings of Venerable Panchen Ötrul Rinpoche in Ireland.Teachings of Thich Nhat Hahn at Plum Village, SW France. Such a profound impact on me. Made new friends for life. The places I found myself arriving to were so spiritual and healing… Bude, Woking, Monsegur…felt like a higher power was plotting my course and I was just the passenger. Most days I would write. I could not have made it this far without the therapeutic nurturing healing of restorative yoga. My wish in this new way of living is to be able to pass this on to help anyone in trauma. So much so I received my Restorative Yoga Teaching certificate last year. I would like to share this nourishing practice. To pass on the coping tools in my toolbox. To offer some healing and compassion in trauma and grief. I am not sure how this will all come about but I know it will present itself when the time is right. Right now I feel and hear the universe telling me write, share, help, inspire, so the journey begins.
Introducing Jason Continued.
Jason’s hair started to fall out and his scalp sore. The radiation really took its toll on Jason. Once completed Jason was very fatigued and his energy level and mood was very low. It was a difficult time. Jason was experiencing fullness in his ear and sometimes the hearing would go temporarily. He would panic. It was a very frightening time. Jason missed a lot of school. I remember trying to do homework with him. I would have to read the words to him because he was so dizzy and nauseous and words were jumping all over the page. Despite feeling so ill Jason managed to keep going on the power of his strength and determination and passed the semester.
The following 10 years were to present the biggest challenges and cruelty yet. Before I go on I know it will be hard to believe unless you knew Jason but despite all of this Jason loved life. Jason always approached his surgeries positively and calmly knowing that as long as his neurosurgeon and I were there this was the answer to getting back into life. To get back to school, to graduate, to get a job. That was his goal. Many times I have thought about what Jason would have accomplished, what he would be doing if NF2 hadn’t made it’s appearance.
At age 20 Jason’s hearing on his left ear started to rapidly decline and he became totally deaf on the left. The tumour was growing and putting pressure on the brain stem and on the balance nerve. Jason had 25 treatments of stereotactic radiation therapy. Jason started having serious balance issues which robbed Jason of riding his bike that he so loved to do. Jason developed tinnitus(high pitched ringing) in both ears. So stressful..agonizing ..watching this all happen and not a thing I could do but be with him every step of the way.
At age 22 a routine MRI showed a growing tumour around the smelling nerve (the olfactory groove). Jason had brain surgery to remove a malignant meningioma Grade III tumour. I knew then that we were in trouble. Surgery was followed by 25 treatments of conventional radiation therapy. Towards the end of that year an MRI showed 4 spinal tumours. The wrath of NF2.
At age 25 Jason and I went to the Montreal Neurological Hospital for almost a month. Jason was having debilitating dangerous seizures. Jason underwent two brain surgeries to remove scar tissue from previous surgical sites. This is where the increased seizure activity was coming from. This was effective in reducing the seizures for a couple of years.
At age 27 Jason was having increased headaches, dizziness and seizures. Jason had brain surgery to remove two meningioma tumours. They were Grade I and II.
Jason began having increased pressure in his head, headaches, vomiting, and dizziness. The MRI showed a recurrence. Approaching 29 yrs old Jason underwent brain surgery to remove a regrowth of a meningioma.
Over the next six months vision abnormalities were happening along with increased brain pressure and pain. MRI showed a fast growing tumour invading his orbital cavity of his only seeing eye and as he always said ‘nothing can happen to my eye’ so Jason was up for the surgery no matter the risks. Approaching age 30 Jason underwent brain surgery , two mengiomas were removed, one infiltrating bone(en plaque) and the other lying right above his optic nerve. Six months later an aggressive inoperable tumour was diagnosed and shortly after claimed his life.
Before I go I want to share an email that I had sent to Jason’s professor at College on Jason’s behalf (he was 27). The reply I received says it all…. to see his spirit and character.
From me(Mum) to professor: My son Jason has asked me to contact you.Jason is very ill today with extreme dizziness and vomiting. Over the past 2 weeks Jason has been attending classes with great perseverance. He has been feeling nauseous and dizzy especially when reading. Jason is battling brain tumours and has an appointment to see his Neurosurgeon. Jason is very worried about the exams that he is missing and was unable to read the material due to the dizziness. Is there any way Jason can write the exams at a later date? Jason has tremendous drive and dedication to go to college and loves Print Media.
From prof. to me: Yes, Jason had told me he hasn’t been feeling well. I did tell him not to worry about it. We can easily make it up when he is feeling better. Jason is an absolute pleasure to have in class. He works very hard, grasps things well and has made quite an impression on his classmates. He has several people looking out for him all the time, even more than he probably has any idea about. I’ve never seen or had a class that was so supportive. It’s so nice to have such a wonderful group all around. And what a sense of humor. It’s wonderful to see so much silliness and such an outgoing personable nature, especially considering the struggles he has. He’s always so positive, smiling and making jokes. Please let him know that I hope he’s feeling better soon and wish him all the best at his appointment. He really deserves some good news there.
Introducing my son Jason
To introduce you to Jason… to get a feel of Jason…. here is a condensed summary that will give you a peek into Jason’s life.
Jason entered the world of Neurosurgery at age 4. Up until then Jason’s only other stay in hospital was when he was born, a healthy beautiful baby boy. The world became a better place that day.
At 4 yrs old Jason had surgery to remove a Meningioma brain tumour.This tumour was growing around the third optic nerve.The nerve had to be severed to remove the tumour and as a result Jason lost the sight and use of his right eye. Jason now had complete third nerve palsy- a totally closed eyelid, no eye movement up or down, pupil very large and painfully sensitive to light.
At age 5 Jason had eye surgery to try to realign the pupil which was now placed outward.
At age 8 the tumour reappeared in the cavernous sinus and was inoperable. Jason was treated with 25 treatments of conventional cranial radiation which halted the growth.
About 2 years after the radiation treatments were completed Jason developed partial complex seizures from the frontal lobe. These seizures were very physical, dangerous to Jason as he had no awareness. Jason immediately was put on a medication called Tegretol which made him very moody and short-tempered .The Drs switched the medication to another drug called Dilantin that was more agreeable but made him tired. Meanwhile, this was playing havoc on his body combined with going through puberty.It was very tricky to get the right amount in his body that would stop the seizures but wouldn’t make him so nauseous and dizzy making it hard for Jason to function. This was a battle for years to get the right dosage while he was growing. Jason had an overdose through this time and passed out in the bath. It was a very dramatic emotional time. Jason was having MRIs every six months and then yearly.
At age 15 Jason went in for a routine follow up appointment and we were told the MRI showed two new brain tumours. Jason now had bilateral acoustic neuromas(a tumour on the right and left hearing nerve) and was diagnosed with the disease Neurofibromatosis 2(abbreviated NF2). Leaving the hospital with this foreign word written down on the back of a piece of pink message paper, I typed this into my computer and dove into the world of Neurofibromatosis 2. This disease is a rare genetic disease which produces tumours that attack the cranial nerves. Fifty percent of all NF2 cases are spontaneous and after genetic testing this was the case with Jason. The bilateral acoustic neuromas are the hallmark of NF2. Tumours can show up anywhere in the brain, brain stem, and on the spine. Jason and I were in complete shock when we were told this as we were expecting the usual ‘no changes’ as this is what had happened since age 9. The family was numb for days and poor Jason was in a daze and unable to concentrate at school. I just wanted to wrap him up in cotton wool and take him away from all of this but I had to make him keep his routine, getting up at 6.30am and catching the bus for a day at school. Jason was told there was a good chance of losing his hearing. Jason was so distressed knowing there were tumours in his head, like ticking time bombs threatening to rob his hearing at any time .Treatment options were discussed with many doctors.Surgery was not an option so radiation seemed the way to go.Because this disease is so rare in young people it was very difficult to find success rates of different treatments.Gamma radiation was recommended by some but was not possible because OHIP would not pay for it and the treatment costs were $50,000 US for each tumour. I took Jason to Doctors in Toronto and sent his file to top neurosurgeons in the States for their opinions.Stereotactic radiosurgery was finally decided and was done at the Cancer Clinic here in Ottawa. This was the most difficult decision I have ever made in my life.The plan was to treat the tumour on the right side and see how it responds.The left one will be treated at a later date. Jason went to the Cancer Clinic everyday Monday-Friday for 25 treatments. I picked him up from school each day at 12.30pm and we drove the 40 minute trip to the clinic and got home around 5.30pm. These were really long days for Jason and especially during the latter half of the treatments Jason would sleep in the waiting room awaiting his turn.It was so sad to see my teenage son lying there amidst mostly seniors.Throughout this whole ordeal Jason never complained or got angry or upset.He was a real trooper and the nurses were so humbled by his bravery.
To be continued…
Brave hat on! Jason’s voice ‘Just do it Mum! ‘
Fresh clean air. Sunny morning. Dogs are walked. Lake smooth like glass with an odd ripple. Call of a loon. Gentle breeze. Leafy branches waving at me. Today is the day I introduce myself to the cyberworld. Coffee in hand sitting at the table of my 10th or 11th housesit I type in wordpress.com. A week ago in my local village library I spotted a book ‘How to Blog a Book’ and it jumped off the shelf. Having read through it the past few nights managing to retain a small part of it I woke up feeling this is the day to introduce my hero, my teacher, my son Jason to the world. I am going to attempt to create a blog site. Not a single person that met Jason or heard of him escaped the emotion of being profoundly affected and inspired by this compassionate brave soul. This story needs to be shared. A faint whisper in my ear. ‘It’s ok you can do it, you will be all right ‘. Reassuring and comforting. Almost feels like a light shawl is being draped over my back, shoulders and upper arms. My hands and fingers feel light and tingly, poised on the keys, almost like they are being held up from the back of my hand by a thin thread to above. Time has stood still right now, no other thoughts, just me, the keyboard, the lake, the trees and the sounds. Intimate safe conditions perfectly orchestrated to lead me to and guide me through this open door. Rhythmic snoring of the dogs. Chattering and arguing squirrels, a loon, crows in the background announcing some treasure, the music of the birds in the trees- tweeting, delicate, high octave singing almost like a flute and piccolo playing back and forth. A gust of wind rustling the leaves. The tall lake grasses swaying back and forth. From behind comes a family of geese. So idyllic or so it looks that way. Does a mother goose feel sorrow if she loses an offspring? The faint sound of a distant motor boat. Rapid flashing of diamond sparkles on the lake surface- like angelic pure white fireflies sending a very fast morse code. Yes this feels so right, I feel a gentle supporting force behind me saying Go! we are with you.






















































































