I was feeling healthier than ever. No more fractures. Except for the time I took a header out of my chair, reaching down for a box of paints in my bedroom closet. I broke a leg, not a surprise, from the fall. I was home alone, Mom was at Bingo and my youngest brother Mark had moved out to his own apartment by then.
After getting the wheelchair off me, I crawled to the phone ( this was way before cell phones were in existence) and called 9-1-1.My dogs at the time, two cockerpoos named Peewee and Fluffy came over to console me, each probably thinking 'What are you doing on the floor with us? Wanna play?"
By then Dr. Nicholson was semi-retired so I went to the local Emergency Room. My leg was casted and I returned home, all before Mom got home from Bingo. What a surprise she had, seeing me laying in bed. Of course she felt guilty but it was all my fault for being stupid.
From then on I saw local doctors but thankfully I didn't need them as often. They were pretty much in the dark about my rare condition so they relied a great deal on my experience how to deal with the fractures and the pain.
I started getting more and more stress fractures, a lot of aching in my worn-out bones, arthritis acting up when the weather changed. I had so many cracks in my bones the x-rays looked like a road map, difficult to tell new cracks from old ones. Sometimes I felt immune from the pain and didn't realize I had a stress fracture.
I saw Dr. Nicholson for the last time on a sentimental examination when he wanted to "update" his records and called me for an appointment. It was closure for him since he was officially retiring. I was one of his longest-running amd rarest patients. Maybe he also just wanted to say goodbye.
He examined my legs and I could see the wheels turning in his mind as he carefully made verbal notes, mumbling under his breath, something about the surgeries, gazing at my bowed, stunted legs, a sense of regret in a hushed tone, as his wife took notes on a yellow legal pad. She was his secretary now, the first time I ever met Mrs. Nicholson. He was more than just my doctor. he had a life too and I could imagine maybe he had kids and even grandchildren away from the hospital.
I felt kind of sorry for him. I knew he tried hard to help me all those years, and he did help me. He eased my pain and tried to make my life better. The ultimate goal-walking- wasn't achieved, and I'm sure that pained him maybe just as much as it did me.
I thanked him for everything, assuring him I was doing well, in college now, more independent then ever. I was alive, thanks to him
As maybe a last grasp of hope( for both of us), Dr. Nicholson threw out the idea of going to the world famous DuPont Hospital in Delaware for possible "total reconstruction" surgeries- repairing my legs, back, all of my deformities. It would mean months of surgeries, pain and rehabilitation, all with the goal of walking in the end.
This time I said no. I was old enough now to make my own decisions. There were no guarantees that this process would work. It might even leave me bed-bound and unable to sit, let alone stand.
I decided enough was enough. I was going to school. My fractures were less and less. I had a semi-normal life. I was happy. I was long used to my lifestyle, proving to myself that I could live a full life, even if it meant seeing the world sitting down.
So we parted after so many years, shaking hands. We were special to each other, Nicholson and I. Saying goodbye to an old friend, knowing this may be the last time we meet, was hard, but it also meant turning the page on another chapter of my life, leaving most of the old pain behind. I would never forget him , as I hoped he would feel the same way about his "Jeffrey." ( Even after all those years he still mistakenly called me "Jeffrey").
Physically, I was feeling better. Psychologically, I was feeling better about myself, my self-esteem at an all-time high. The 1980s were my coming out party. Now I decided to tackle my smile. Now that I had more reasons to smile I wanted my teeth to look nice. O.I. often effects dental health too, making the teeth brittle and discolored. My courage increasing, I decided to do something about it, especially since one of my older brothers, Pat, had braces on his teeth and the end results were great.
Why not have a better smile for others to focus on, rather than my legs? I found less resistance to my dreams from those around me, less doubts, so I floated the idea to Mom and she was all for it.
After a long process of getting my teeth filled, cleaned and bleached ( I had many years of dental health to catch up on) I was ready for braces- or so I thought.
I wanted to see the same Orthodontist that my brother saw, only he had steps to content with, leading into his office. This was well before the Americans with Disabilities Act was passed, making it a law that all building and businesses, especially new ones, were to be accessible.
I tried another Orthodontist in town. His office was accessible so I scheduled an appointment.
After the exam and consultation the dentist looked at me, wearing a frown and said something like "Braces cost a lot of money. You're in a wheelchair. Do you really need braces/?"
Honest to God. that's what he said. I think he was afraid to tackle the job because of my O.I.. I suppose he was trying to be honest in an awkward way, but I couldn't believe that he was actually saying "You're crippled..why do you want nice, straight teeth?"
I had experienced rudeness in the past. I was even patted on top of my head once in an elevator, like a puppy dog. But I never faced this kind of prejudice and ignorance. I felt like running over his toes.
After the ADA law was passed, many physical barriers came down. There were more ramps, accessible parking places and cut curbs. Life was easier for people in wheelchairs, especially compared to the old days when my parents had to call ahead to restaurants or movie theaters just to check if there were steps to deal with.
Even though physically barriers were crumbling, the invisible barriers of discrimination remained solid. Old views die hard. I went home from the Orthodontist discouraged but not beaten. I wasn't going to let one jerk stop me.
It was dear Mom who encouraged me to make an appointment with my brother's Orthodontist. My Uncle Henry (who was around at the time) said he would help us with the steps if the doctor agreed to treat me. It wouldn't hurt to seek a second opinion.
'Sure, we can do it," Dr. Gerald reassured after examining my teeth. I know my condition had to be a concern, but he never let on. He gave me a chance, and my confidence soared.
I was thrilled, and I had to be the happiest patient he ever had to wear braces for two-and-a-half years. The pain was worth it ( what was a little more pain in my life?), the rubber bands, the loss of eating certain foods for a while ( chewing gum and corn on the cob were the biggest losses), the monthly visits to tighten the metal, the rough wires scraping my gums,the struggles up and down the steps each time.
We did the best we could, and sometimes Dr Gerald would come out to the parking lot for a simple fix or tightening, as I sat in the front seat of the car, especially when it was raining or snowing, saving us a trip ( literally) up his steps..
In the end all the sacrifice was worth it. When the braces were finally removed my smile wasn't like Tom Cruise, but it was so much better. I was proud to open my mouth and flash those dimples.
It was a well-earned victory over prejudice and a triumph of dignity. I planned on hanging around life a while now, and my smile would always be with me. I never forgot to use it.
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