Monday, April 8, 2019

MY LIFE WITH BRITTLE BONES-2

He saved the leg and cleaned out the gook, but I had lost too much calcium. After that, no matter how much calcium they shot into me it was never enough.

So began the vicious cycle of fracturing a bone (usually a leg bone), wearing a heavy plaster cast for six to eight weeks, then fracturing again. In and out of hospitals was my so-called "normal" routine. Ambulance trips anytime, day or night, from anywhere- school, church or 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 tossing a beanbag.

The doctors started calling me "China Baby" because my bones shattered like glass. I  recall feeling every fracture and hearing it as well, the terrible crunching sound.

For a kid, I didn't know what to think. I should've been more worried about everyday kid stuff, like collecting baseball cards  or comic books, not concerned about my inevitable next fracture.

That's the thing about O.I.- not only does it hurt like hell ( although over the years my tolerance for pain grew) but it's painful psychologically too. I was always thinking of the next fracture, afraid not to move or twist  suddenly, always with a certain degree of anxiety  and constant caution.

It never went away.

Thankfully, I was young enough so I really didn't know any better. To me, being in and out of a cast every few months was normal. That was my life. Not being able to do things other kids could do was normal. There was no other way. What else could I do but accept it?

Pretty soon the words "Osteogenesis Imperfecta" were burned into my brain. The term was marked everywhere, from x-rays to charts . I would tell interns or nurses what my condition was even before they asked. Such long words from such a little kid. "I have Osteogenesis Imperfecta," I said matter-of-factly. No big deal.

I didn't know the condition was very rare. Didn't know the doctors were telling my parents I probably wouldn't live very long. The stress of the constant fractures would eventually take its toll on my heart. If I lived past the age of sixteen, when my bones would get stronger  and my body matured, maybe I would make it.

But that was a long way to go.

Although I endured many fractures over the years several stand out in my mind. Even to this day I feel them.

The Back-Breaker: Remember the old saying "Step on a crack, break your mothers' back?" Well, this time it was my back.

One of my older brothers was casually pushing me in a stroller down the street on Fourth Avenue, where I grew up. We were getting ready to walk over to the park and watch our town's annual rite to spring, the Dogwood Parade. It was mid-May, a warm, sunny, beautiful day.

We went over a crack in the sidewalk and two vertebrae in my back were crushed.

The  pain was different than my leg fractures. I screamed out in agonizing pain. I couldn't sit or lay down. I was only four-years-old.

Instead of going to the parade that day I had an unexpected appointment with another ambulance and Dr. Nicholson.

The worst part of this fracture was the need to wear a full body cast for several months. Only my arms and head were free to move. I couldn't do anything for myself, and even had trouble eating since I was frozen in plaster , flat on my back.

After the body cast was removed I wore a corset for a long time. A constant reminder of that once gorgeous spring day.

The Three-Limb Fracture: My Dad was carrying me home from church one Sunday morning . He used to carry me everywhere, like Tiny Tim in Dickens' A Christmas Carol. I was  light and small, not into the wheelchair phase of my life yet.

At the time we had lived a block from our church, so he normally walked to church with me. However on that particular morning he slipped on a patch of black ice and fell. Luckily Dad wasn't hurt but I broke both my legs and shattered my right elbow.

I never saw him so upset, blaming himself, But it wasn't his fault Shit  happen. Bravely, I tried not to cry  as we waited for an ambulance, not wanting him to feel bad.

I could deal with the leg fractures. They were a dime a dozen. The elbow fracture was a different animal. Since it was literally shattered into pieces they had to surgically repair it.

The elbow was cast first, in traction for a few days. I only found out later that Dr. Nicholson was away and it was  decided to wait for his return. Until then spasms shot through my arm every few seconds, as they tried to control the pain with medication, but remember this was the early 1960s, so the entire procedure was pretty ancient compared to the treatment and pain management  of today.

I was never so glad to see Dr. Nicholson in my life. We had a true love/hate relationship. I loved him for his help to take the pain away and trusted him immensely. But I also dreaded seeing him, as this usually symbolized pain.

The Birthday Break: It was a happy day, not only because it was my seventh birthday, but I was also getting another cast sawed off that morning. We were having spaghetti for dinner, my favorite. Mom always asked us what we wanted for  dinner on our birthdays, a family tradition.

Right before dinner I slipped on a rug and went down hard. It wasn't  just a bump or bruise like other kids might  have from such a tumble. Mine was yet another fracture along with another ride to Children's Hospital in Philly. A fresh plaster cast awaited my arrival.

So much for the spaghetti, but when I got home I still had enough energy to blow out  the candles on my birthday cake.

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