EXCERPT
1. ITS A LONG WAY UP
I have Osteogenisis Imperfecta. Brittle bone disease. I had literally hundreds of fractures as a kid. So many, in fact, they eventually lost count.
I mention my physical challenge from the start, because O.I. has been the centerpiece of my life. Almost everything in my life revolved around my condition.
My mom and I often pondered what my life would have been like if I didnt have O.I. How would I have turned out/ Still a good guy, or maybe a drug dealer? Fate and destiny are funny that way. Everything seems to fall into place, as you will see as my story unfolds.
Even I dont know much about my condition. I have tried researching O.I. on the Internet, but there really isnt that much information out there, the condition is so rare. What I have found out is, its a genetic disorder, often on the mothers side; one out of several million people has it, usually the life expectancy is about 25 years; and, there is no cure.
Even though O.I is classified as a genetic disorder, mom claimed I was perfectly normal and even walked, up until my first fall. Who knows? I may have been born with fractures as so many O.I babies are, but it just never manifested itself until one night when I was 21 months old.
I would rather not think about the possibility that I already had broken bones when I was born at 6:15 am on Friday, November 16, 1956. Its a terrible thought, having fractures in the womb, being slapped by the doctor, crying, with the doctors and nurses thinking it was a healthy cry, not a cry from pain. What a way to enter the world!
It was bath night. I loved going into my room as the tub filled with bubbling water, getting a dry wash cloth out of the drawer, then tossing it into the water with a splash, and watching it sink to the bottom. Giggling, my cute dimples showed even then. Little things like that made me happy.
As fate would have it, on this night the linoleum in my bedroom was wet. I slipped on my way to the drawer, fell and broke the femur bone in my left leg.
That single moment was the start of a new life. They rushed me to the local hospital, where they put my leg in traction. Now, I dont know if this was common practice with little kids back in the late 1950s, instead of casting the leg, but that is the treatment they gave me.
During my stay in the hospital someone moved the traction. Never found out whom. A nurse? A cleaning lady? A family member by accident?
My left leg started to swell, my toes turning blue. Poor circulation- but why? They couldnt figure it out.
So they transferred me down to one of the big city hospitals- the old Childrens Hospital in nearby Philadelphia, Pennsylvania. That was my first encounter with the famous Dr. Nicholson. It wouldnt be my last.
Dr. Nicholson was a world-renowned bone specialist. He was the best, and he would be my savior as a child. We had a lot of tough times together and seeing him always meant pain and suffering, but he had such a cool, calming effect on me, and I trusted him so much. Not that I ever looked forward to seeing him.
He was tall and thin, razor-sharp blue eyes behind round wire-rimmed glasses, with short snowy white hair and a British accent that made him sound very cool and distinguished. I would think of him as the perfect Dr. Livingstone in the jungles of Africa, with a friendly Marcus Welby quality about him.
For some strange reason he always called me Jeffrey, but I never knew why. His final \parting line was always, See you, until you need me again.
Who knew, at that first meeting, how much I would need him back then?
Once Nicholson saw the condition of my leg, first, he was mad-why wait so long to transfer me? He whisked me into the operating room without delay. I think of my poor parents and what they had to be going through. Their fourth son, not even two years old, rushed into the OR Would they ever see me again?
Upon opening my leg Nicholson found the problem. The bone was not knitting properly. All the marrow and calcium were leaking underneath the tissue. That is why the leg was growing to several times its normal size.
After the surgery, over a cup of coffee, Nicholson told my parents of the events in the operating room. How he had to step away from the table- the odor from the leaking marrow was so bad. How he had to make a decision right there, a quick decision but one, which would affect my entire life.
Amputate the leg or save it?
He saved the leg, cleaned it out, but I had lost too much calcium. After that, no matter how much calcium they shot into me, it was never enough.
And so began the vicious cycle of fracturing a bone, wearing a plaster cast for six to eight weeks, then fracturing again. In and out of hospitals. Ambulance trips, anytime, day or night. From school, from church, from home.
I broke all my limbs and my back in every way imaginable- sneezing or coughing too hard, turning over, awake or in my sleep, even once merely tossing a beanbag during a game.
Snap! I would break. The doctors started calling me China Baby because my bones shattered like glass. I still remember feeling each break, but hearing it as well, the terrible crunch of bones breaking.
For a little kid, I didnt know what to think. I should have been more worried about collecting baseball cards or comic books- not about my next fracture.
Thats the thing about O.I.- not only does it hurt each time a fracture occurs (although during the years my tolerance for pain grew)- but its also very painful psychologically. I was always thinking of the next fracture, afraid not to move or twist so quickly, always with a certain degree of anxiety and caution constantly on my mind.
It never went away. A terrible way to feel.
But thankfully, I was young enough so I really didnt know any better. To me, being in and out of a cast every few months was normal. Not being able to do things other kids could do was normal. There was no other way. What else could I do but accept my life?
Pretty soon, the words Osteogenisis Imperfecta were burned into my brain. It was marked everywhere-on charts, x-rays. I would even tell interns or nurses what my condition was before they asked.
Oh, I have Osteogenisis Imperfecta. No big deal.
I didnt know it was very rare. I also didnt know that the doctors were telling my parents I probably wouldnt live long. They thought the stress of the constant fractures would eventually take its toll on my frail body. If I lived past the age of sixteen, when my bones would get stronger and my body would mature, well, maybe I would make it.
But that was a long way to go
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