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.