Saturday, April 6, 2019

MY LIFE WITH BRITTLE BONES- 1

"UNBREAKABLE SPIRIT"  A True Story  by Gregory Smith


FORWARD

This story is dedicated to anyone who has been labeled as "different." It is for the physically, mentally and emotionally challenged, and for anyone in need who is looking for hope and inspiration. It is especially devoted to those few of us who have Osteogenesis Imperfecta, and families and loved ones connected to someone with O.I. My wish and prayer for you is that, in some small way, my story will offer encouragement  to overcome any adversity and be the best you can be. Don't ever give up!

My story is for the able-bodied too.Perhaps in some small way it will help to break down barriers , raise awareness, and allow everyone to see that we are not so "different" after all.

TO:

My Mom and Dad, the real heroes of this story. See you in Heaven someday!

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I have Osteogenesis Imperfecta, brittle bones disease. I had literally hundreds of fractures as a kid. So many, in fact, they lost count.

I mention my physical challenge upfront because O.I. has been the centerpiece of my life. Almost everything in my life revolved around O.I.

My Mom and I often wondered what my life would've been like without O.I. How would I have turned out? Still a  good guy or not? Fate and destiny are funny. Everything seems to fall into place , as you will see as my story unfolds.

Even I don't know much about O.I. I tried researching O.I. on the Internet but in the early days, there really wasn't much out there  on the rare condition. I know it's a genetic disorder, often on the mother's side of the family. One out of 20 million are affected by some type of O.I., and life expectancy  is about twenty-five years. There is no cure.

Even though O.I. is classified as a genetic disorder, Mom claimed I was walking up until my first fall. I may have been born with fractures as so many babies with O.I. are, but the condition just never manifested itself until one night when I was twenty-one-months old.

I'd rather not think about the possibility that I already had broken bones when I was born at 6:15 a.m. on Friday, November 16, 1956. It's a painful thought, having fractures in the womb, slapped by the doctor and crying, with the nurses thinking it was a healthy cry, not a cry from pain.

It was bath night. I loved going into my room as the tub filled with bubbling water, grabbing a dry wash cloth out of the drawer, then tossing it into the water with a splash, watching it sink to the bottom. 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, tumbled and snapped the femur bone in my left leg.

That single moment was the start of a new life. I was rushed to the local hospital where they put the fractured leg in traction. I don't know if this was common practice  with kids back in the late 1950s instead of casting the leg, but that is the treatment I received.

During my stay in the hospital someone moved the traction. A nurse or cleaning lady or family by mistake?

My left leg started to swell, my toes turning blue. Poor circulation, but why? They couldn't figure it out.

So I was transferred down to one of the big city hospitals, the old Children's Hospital ( or CHOP) in nearby Philadelphia, Pa. That was my first encounter with the world famous Dr. Nicholson. It wouldn't be my last.

Dr Nicholson was a world-renowned bone specialist. He was the best, my savior as a child. Seeing him meant a fresh fracture yet  he always had a calming effect on me and I felt so much better seeing him, like he would take the pain away, He would makes things better. I trusted him.

He was a thin guy with sharp blue eyes behind round, wire-rimmed glasses and short, snowy white hair. A slight British accent made him even more distinguished. He had a friendly, Marcus Welby sense about him.

Once Dr. Nicholson saw my leg his first reaction was anger. Why did they wait so long to transfer me to Philly? He whisked me into  surgery without delay.

My poor folks. They had to be  a wreck, the first episode of so many in the future, going from a healthy little boy to a life-threatening condition in a matter of days.

In surgery, Dr. Nicholson  pondered the issue before him: the bone was not knitting properly. All the marrow and calcium was leaking underneath the tissue. That's why the leg was growing to several times its normal size.

After surgery and over a cup of coffee in the hospital cafeteria, Dr. Nicholson  reviewed the events with my parents. How he had to step away from the operating table, the smell from the leaking marrow so bad. How he had to make a quick decision to amputate the leg or not?

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