It’s funny how memories unfold in the presence of music. Whenever I hear Aerosmith’s Crazy, I’m reminded of the summer of ‘94…
At around ten years old, the progression of Scoliosis (a common side effect of Duchenne muscular dystrophy) began to affect the curvature of my spine. The skies were often filled with shadows when I made visits to the Hugh MacMillan Rehabilitation Centre for x-rays and other examinations. I looked forward to returning home at the first instance of arrival because I never understood. I found the appointments tiresome and uneventful. In retrospect, it was worse for my parents, considering their added worries.
While the situation deteriorated, visits became regular. I noticed significant changes in the curvature every time they presented the film. As a temporary measure, support pads were installed on each side of my wheelchair. I tried hiding them underneath my clothes as much as possible, but a problem arose during the summer, being black and plastic. I suppose superficiality had a price as far as sporadically screaming like a monkey was concerned!
Sometimes in the bathroom, I’d use the left pad as an anchor to crack my back. Despite the lack of effectiveness, it felt incredibly good. I realized the severity when I started hating what I saw and felt, lying naked in bed. I was disfigured.
In time, I understood that something had to be done, and quickly. I needed a spinal fusion surgery, where steel rods would be fused onto my spine. I didn’t care much for risks, even when survival had a 50/50 chance. I needed to be straighter.
I still remember when Dr. Fehlings sat down with my parents and me to explain the details. She was sympathetic and caring in her soft-spoken voice. Though, it was rather amusing when with much optimism and excitement, I suddenly blurted, “I’ll do it!” She nearly fell out of bed!
The operation drew closer as I spent most nights listening to the radio. I often looked to the window facing a brick wall of our neighbour’s house. Driving down to the Hospital for Sick Children on the day prior to July 20, I watched the scenery pass by with the thirteen years of my life flashing before my eyes. We arrived at the newly reconstructed building and were given a tour of the floor I was booked to stay. I watched a little television without much concentration, preparing my mind for early next morning.
I awoke at six o’clock, and by then, Jackie and Dad had already arrived. The nurse came to set up the intravenous and wheeled me outside to the rest of my family. In a moment that seemed to have lasted forever, they finally took me away. As the waves of goodbye grew silent, I was captivated by the highway of infinite fluorescent lights. All I thought of was the intravenous, worried that someone might rip it off by accident.
It was only while I waited outside the operating room that reality sank in. I never felt more alone. Inside, the sterile environment gave an unfamiliar feeling of eeriness. I was transferred to the operating table that was hard as rock, but relieved that no one twisted my arm or ripped my flesh, the anxiety lessened. I remember someone asking me to count to ten, and a blurry image of a cute nurse between my toes. I said to her, “Whoa, you’re pretty…” and immediately blacked out.
The operation took over eight hours. It would have been much faster if it hadn’t been for my giant cow tongue that caused for a number of headaches in the anaesthesiology department. Intubated and ventilated, I awoke in the Intensive Care Unit and couldn’t mutter a word. I was frustrated over the fact that I couldn’t get up onto my wheelchair. With much discomfort from the catheter, I just wanted was to get the hell out.
It always felt as though I needed to urinate badly, even when my bladder was empty and draining. I wanted to tell the nurse, but hadn’t the strength in my hands and could hardly see what I wrote. Without any luck of being understood, we used alphabet cards instead. The feeling was apparently normal.
From a distance, the radiant sunlight atop white bed sheets was almost dreamlike. As the anaesthetics wore off, I was moved to my original room. When I awoke once more, I was terribly uncomfortable. I had a button for small doses of morphine, but rarely used it unless the pain became unbearable. Since I frequently had to change positions, a towel was placed under my back for easier turning. It was also safer for my wound.
This was pretty much how things were, while Mom stayed overnights as well. The catheter was ultimately removed, but not until after a torturous reinsertion! There were times when I’d be transferred onto a mobile sofa bed so I could go downstairs for some fresh air, but I never wanted to remain in a compromised position. I was embarrassed. I tried sitting up on several occasions, but couldn’t hold my body upright.
And as much of a surprise as it may be, I had no appetite, even with the amount of gift foods from friends and family. The strangest thing was that warm meals made it difficult to breathe. A nice, juicy steak was served for lunch on the last day, probably as a parting gift for kicking me out after eight days. My sister ate it… and I really shouldn’t have written that!
The nurse brought codeine while my parents were packing. I was lifted onto the back of our van with seats unfolded into a bed. It was rather comfortable, and also true what they say, how laughter is the best medicine. I forgot the pain as soon as my sister and I were scaring drivers from behind with our magic fingers.
When we arrived home, I was transferred directly onto bed, and how different of an experience it was, watching movies on the side. Fortunately, the electronic version was quickly delivered, which gave me the freedom I needed. I tried my hardest to stay on one side with much agony so Dad could get more sleep, but there were many times when the agony was overwhelming. Once I was able to sit up again, I finally took a shower that required the use of plastic wrap for protection.
It took a couple months before I was fully recovered. I lost more than ten pounds in the process. Returning to school for the eighth grade without great delay, it felt like I transformed into a completely different person. I even became taller.
The experience had its moments. Although most of my memories are filled with scattered thoughts of hospitals and silent car rides in the rain, they’re still bittersweet. They’ve become a part of me. Who would have thought a two-foot scar down my back would change my life forever?
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