It was around this time in my life when we moved from my childhood home on Fourth Avenue to a smaller row-house on Hall Street, still in beloved Phoenixville. Hall Street was where Mom grew up. It was three stories, so Dad would carry me up and down the stairs .I still wasn't very independent due to my fragile body, plus the new house wasn't accessible. I crawled around the downstairs, like an infant would, instead of using a wheelchair inside. I had a wheelchair, but for some reason I didn't use it much indoors. I got from room to room but as I grew older, it was an odd way of traveling and I used a wheelchair full-time.
I loved sitting outside in my wheelchair in the summer. playing whiffle ball or Nerf Ball with my brothers or kids around the neighborhood. This made me feel "normal." Pushing my chair around the block, getting to know the neighbors and enjoying the fresh air and beautiful weather gave me a sense of freedom.
I had yet another crush on a younger neighborhood girl who spent some of her time with me playing cards or doing homework. I didn't have many friends, at least not around my age. Because I spent so much of my early life in hospitals and casts and indoors recovering from fractures I didn't develop close friendships with peers who had things in common. There was no "hanging out with buddies" because I was so isolated in my youth.
My teenage years were also the surgical years. I was still fracturing but I was alive, which amazed the doctors.
When I turned thirteen they decided to try surgery. I had five operations on my legs. Dr. Nicholson thought that inserting stainless steel pins and rods into the bones of my lower legs would add strength and would hopefully allow me to stand and walk. My legs were slowing beginning to bow ( or curve), a grotesque event but common in O.I., so the pins would hopefully keep my legs straight as well.
But after each surgery a few months later a scab would form on my leg. Soon, the shiny sharp point of the pin would emerge through the skin. My body rejected the pins. Dr. Nicholson would then pull them out with a pair of pliers, and the process would start over again. With each surgery the pins were heavier and larger, yet my body said no.
It was a frustrating few years for me and the doctors. All that work, rehabilitation, months in a cast, only to see the gruesome sight of the pin protruding from my leg once again.
Every time I had surgery I dreaded it, especially leaving home. Those were emotionally painful days, never knowing if I would go home again or when. I spent most of my childhood at home, especially in my room, the center of my world. Leaving that warm environment for a cold, sterile hospital ward was tough. To a kid it was scary stuff, especially the uncertainty.
Discharge day was like Christmas Day. The care was great, the staff were kind. There was a reason why it was called Children's Hospital. But home was home- the familiar surroundings and people. It was a feeling I always remembered, which served me well down the road when I became a social worker and was on the other end of discharging a patient home.
With each operation my legs became smaller and smaller. The doctors had to take bone out every time, so my legs became stunted. They were rounder, not bowed, at least until the pins rejected, but my legs became dwarf-like, not i n proportion with the rest of my body.
The first time they took off the cast after the first pin and rod surgery I was horrified. I never expected my legs to be so disfigured. They didn't look great before, with all the fractures, but now I looked like a monster. I cried looking down at my own legs. It was a terror I never really got used to, one I could never get away from.
It was during one of those rejections that Dr. Nicholson and I had out first disagreement. Before, he would pull the pins out when they came through the skin far enough to grab. But this time the rods were huge. My legs felt even weaker, and the pain from the past rejections were still fresh in my mind. When we reached the hospital I lost it. Maybe it was all that pent-up anxiety and sadness.
It was like someone else was in control of my emotions. I wouldn't allow Dr. Nicholson, or anyone, touch me. I sat on the familiar table in the cast room where I had suffered so many times before. This time I was determined I had enough.
I wondered why they could not numb my leg when they pulled out the rod. Why did it have to hurt so much? You get a shot of Novocaine at the dentist before a tooth is pulled. This was a steel rod sticking out of my leg, for God's sake.
Here I was, ready to have a stainless steel dagger pulled out of the bone in my leg, and Dr. Nicholson wouldn't give me anything for pain.
It will only take a second, reasoned my parents. Be brave! I cried and screamed "No!"
For the first time since I knew Nicholson, close to ten years now, I felt he was out of touch with my feelings. He acted like he didn't have time for this foolishness. I had been brave for so long. Maybe he took my tolerance for pain for granted. I felt helpless on that cold table. Please, somebody help m, was all that went through my mind. .
My parents couldn't or wouldn't say anything I was their kid. Their hearts had to be breaking yet they deferred to Nicholson. It had to kill them when aides held me down and Nicholson yanked on the rod, successfully pulling it out. I yelled with pain. It was worse than a fracture, which I was almost immune to by then.
I left the hospital in tears. my confidence shaken in my hero, Dr, Nicholson. Suddenly I hated him. Not only for today but for making my legs so twisted and ugly, for not being able to help me although deep down inside, when I was calmer, I knew he was trying). Maybe he was the symbol of the entire damn thing. He personified O.I. and I hated it.
I never wanted to see him again.. I feared surgery more than ever. Yet I knew I was trapped. I would see Dr. Nicholson again. I would often frequent Children's Hospital in the years to come. Like it or not, there was no way around it.
When I stayed in the hospital during those surgerical years, I met many people: other sick kids, nurses, doctors. Often, interns or doctors from foreign countries would stop by my room to gaze at my legs. I generally didn't mind, although as I was growing up I was becoming more self-conscious about my appearance, as any teenager would. I wish I only had pimples to worry about.
At times I did feel like an animal in a zoo. I truly was a rare species, and anything to help doctors understand O.I. better, it was worth the awkwardness of the moment.
One time they wheeled me into this huge auditorium where I was greeted by a sea of white uniformed doctors and nurses. Dr. Nicholson was there, front and center, having various diagrams, charts and x-rays tacked on a blackboard. He lectured for a while, showing the group my legs, and much to my relief, I was out the door once more.
Even though the surgeries didn't help me to walk, as was the ultimate goal, the doctors were right about one thing: after age sixteen I stopped fracturing so much. That in itself was a miracle. Less pain, less trips to the hospital, fewer casts. I could live a semi-normal life. Plus it looked like I was going to live after all.
I was now officially wheelchair-bound. I learned the fine art of doing wheelies and going everywhere fast. I had an electric chair at the time but the doctors thought I needed a manual one more for exercise, the lighter the better.
I got used to life in a wheelchair, and every few years I would trade it in for a newer and improved model just like a car. And as my physical needs increased, so did the variations on my chair.
To me, pushing my chair was like an able-bodied person walking. I didn't think about it- I just did it.
Thar's how most of my life was. If I had stopped and thought about what I was doing I most likely never would've achieved what I did. I just did it.
With my legs even more battered and scarred my low self-esteem continued to plummet. I became more shy and withdrawn. No matter the constant encouragement from family and well-meaning friends, I knew I was different, at least on the outside. My legs were ugly. They would always be disfigured. It was a fact I had to accept and live with. It took a long time until I found peace in my heart and soul, as all I world have to do is look down at my legs and be constantly reminded of my past. So, there was no where to look but up.
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