The year was 1978 and I was six years of age when I sustained my brain injury. It was a cold November night, the entire household in bed, when I became violently ill with an upset stomach (vomiting) and a sudden seizure episode!
My parents wasted no time in bundling me up and heading for North York General from our Scarborough townhouse while my younger sister went to stay with neighbors. Dad literally screeched into the Emergency parking lot! With my mom screaming for help, doctors came scrambling and lent aid. The results of my condition took forever. Mom prayed while dad paced. The doctors were stumped. What the hell was going on with this sickly kid? They worked effortlessly for answers, but things came up short. I fell into a coma soon after I was brought into the hospital.
My parent’s hearts crumbled and the doctors were at a loss for words. I was transferred to the intensive care unit where I remained in this comatose state for two weeks. The day I finally opened my eyes the doctors were fast to take action. I was taken to Sick Kid’s where I was given an MRI and poked and prodded, and the only answer that came was that of a viral infection. I was treated with anti-convulsants and steroids for the seizures, made to get plenty of rest, and went through both physical and speech therapy.
Sometime in January of the New Year I was released, and aside from a few doctor visits and not returning to school until the fall, now having missed a year, I (along with my parents) was left alone. Many challenges lay ahead of me, but I think the worst was that any ‘real’ answers to my tragedy only came to me many years later.
In my mid twenties I began my own investigation by researching the before symptoms that I could remember, the after effects that I dealt and still deal with, and interviewing family members and friends who had been around during that time of my life. Armed with the results I got, the early self diagnosis of a learning disability, and the help of an employment counselor, I finally received the long awaited “professional” diagnosis.
Going through a series of tests conducted by a Psychometristand an evaluation given by a Neuropsychologist, it was concluded and confirmed that I had been haunted by a very rare condition called “Encephalitis”. Only a tiny fraction of the population suffers from this, approximately 0.5 per 1000 individuals, making it poorly understood. Encephalitis is an acute viral infection and inflammation of the inner brain where the ghost of this disease had come to rest within me; and it had spread. It was inoperable then, it still is now. Encephalitis can be focal (hitting one part of the brain) or diffuse (hitting basically everything) which is what I got; a combination of cognitive, motor, and sensory skills were wiped clean out.
My main source of help over the years came mainly through the unconditional support of my parents; whether they had been given any further information regarding my illness upon my release from the hospital, I was never told. Another thing that helped me was my being honest, asking questions and continuing to look for answers. (Exploring all avenues) In a way the truth, ugly or not, did set me free. It gave me peace of mind and allowed me to conclude that I was not going crazy!
Faced with the knowledge that it was more than just a little hospital stay all those years ago, I had to relearn a few things; like how to fit this new information into my life, and who I already had become. With the exception of some barriers and challenges that came along with this life-long injury, things which I had already been going through, I was still me.
I became a bit of an advocate for myself and for others; wanting to help and educate. I got involved with BIST through the Peer Support Mentorship program, Mentoring individuals with brain injury. I also write for their blog. In both venues I hope to share my thoughts that brain injury, while bringing into our lives limitations, it does not create a life of inability.