Taking The Time: When life creates a detour you must not rush through! · by Mark Koning

In the year 1978 I was seven, and it was by far the worst one of my life! I was missing a lot of school due to asthma and a fever. Mom and dad heeded every word my Doctor said, but still, I wasn’t getting any better. Then on a cold November afternoon, things got worse and a sudden seizure episode struck!
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 immediately 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. The Doctors were at a loss for words. I was transferred to the intensive care unit where I remained in this comatose state for eight weeks. I even had to miss my sister’s birthday.

The day I finally opened my eyes my mom’s face lit up along with the awaiting Doctors who were fast to take action, determined to this time get answers. As soon as possible, I was taken to Sick Children’s. I was given an MRI and poked and prodded and then finally diagnosed.

I was being 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 inflamation of the inner brain.

Once discovered, I was treated with anti-convulsants and steroids for the seizures, and plenty of ventilation to bring down the swelling. It was now all too clear that the seizures, respiratory problems, altered consciousness, and vomiting were all symptoms of the illness. The ghost of this disease laid to rest and spread and was inoperable.

The infection I endured varies from being focal, hitting one part of the brain, to diffuse, hitting basically everything. That last one is what I got. A combination of cognitive, motor, and sensory skills were wiped clean out.

“Squeeze my hand.” A few of the first words I learnt. Almost everyday someone would come into my room, read my charts, and get me to squeeze their hand. I had no strength. It was a long while before I could resemble anything close to it. But I tried hard; at everything.

The Doctors had me on a daily routine of medication for the seizures and exercises. The Nurses would push on my arms and legs, up and down, back and forth. I eventually graduated from the bed in my room to the walking bars in the rehabilitation clinic.

The frustration tired me more then anything. I cried a lot at my own failures. I’d yell and throw fits! The words I needed to express myself seemed lost. My words were mostly gibberish. It bothered my parents to see the pain I had to deal with, but they never gave up. And if it wasn’t physical exercises, it was mental ones. Forming words and learning proper sentences. It all took time.

Time did seem to go by pretty quick though, most likely due to not having much time to just lie around. I was kept busy with walking and dexterity treatments. But my day to go home finally came as the Doctors and Nurses all wished us well. When I got home on that sunny late March day it was like my birthday had come early. A cake, presents and balloons waited.

We had help come in for therapy, but as I got a little stronger I continued at the hospital. Once a week my mom would take me in to see the therapist. I would spend a few hours practicing to verbalize, spell and write. I would do workbooks and puzzles.

Back at home I spent my time colouring in books, watching television, playing games, and doing extra work assignments. After school came social interaction. My sister was always there to play with me, and my best friends came as often as they could. Playing with them, especially doing Lego, was one of the best exercises I did.

My birthday in May of 1979 saw many family and friends come to help celebrate! At the age of eight I had accomplished quite a few things in starting my life over. Except for a few little details, I had lost my first seven years.

*********************************

Over the years it’s been tough, some things harder then others. But I managed because I have had a great support team. Family, friends and teachers. I was struggling, but so were they. I don’t know how others could manage through a tragedy like this without that. If my parent’s did not fight for me the way they did, or not help with the recovery, I don’t know where I’d be.
But even some thirty years later, I still suffer from some of the effects my illness brought on. I recovered short of one hundred percent. So my brain does not work to the normal speed of others. Things don’t come as quickly and too much information just gets lost. I don’t always understand and everything has to come at a slow pace.

It can be hard to deal with, and frustrating to no end! There are some activities I can not endure, or even participate in. I sometimes find myself lacking the ability to keep up with conversations. Certain jobs that require speed and accuracy are difficult. I was even told many times over that I just couldn’t accomplish certain things and not to bother. But I was and still am determined not to give up, to keep going.

I used to shy away from telling people of my illness. I did not want to be treated different and it was difficult to fully understand. But sometimes it is unavoidable, and I have to speak up for myself. Now I realize that it is part of who I am and that I should be proud of what I have accomplished. With the support I already have, it’s not that difficult either.

In a strange way my illness has even given me a gift. A unique and special gift that not many others in this world have; the ability to understand life. I was given a second chance. And I’ve worked hard to get to where I am. I’m proud of that. There is no need to rush through life and worry about the little things.