Unbreakable Spirit

Unbreakable Spirit: Osteogenesis Imperfecta
My bones break like fresh saltine crackers.
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I don’t want to be falling. I don’t want to hurt. I don’t want to be picked up. I don’t want to be carried.

I don’t remember when I first knew. I do remember the bathtub. The warm water felt good. I soaked away pain. I played. I dreamed. I was free in the water. Naked. Alone. The worst part was getting out of the tub. I didn’t want to be picked up under the arms and lifted. I felt scared and slippery, I could fall. Would I fall? More pain. More fractures. Hitting the floor with a thud, a crack, a scream. I remember my first major fractures at age three. I was jumping on the bed – two beds in the girls’ room tempted us. Any child would have done what we did. Jump from one bed to the other. Tommy did it. I did it. We both giggled with joy. We found a new exciting game. Then it happened. I slipped off the corner and hit the floor. My arm broke in three places. I would never be the same again.

I have Osteogenesis Imperfecta, the brittle bone disease. My bones break like fresh saltine crackers. Up to now we think I have had fifty fractures. Each one unique. Each one as painful as the first. My bones talk to me. When healed I hear, “Sit down, prop up, rest.”  “Don’t jump, Don’t run, Be careful.” I hear adult voices saying, “Be careful, she’s fragile.” And when I’m bound up in a cast, the bones say, “Owwww!”

 I color drawings of skeletons and mark the bones. Red for pain, blue for bruised, green for crooked. That fall from the bed when I was three, left me with an elbow that doesn’t bend. One arm bends, the other can’t. Over the years I broke that straight arm at least a dozen times. I used to recite for company just how it broke. “Once it happened as I played jump rope on Twelfth Street with my friends. Another time I fell over the mop bucket in the kitchen. And there was the time I broke my arm in church.” I had slipped off the kneeler and leaned too heavily on my weak arm. Snap. I was familiar with the feeling. That time at St. Mary’s Mom gave me the shut- up look. I couldn’t help crying. It hurt bad.

A precocious child, my Mom and my Dad did a good job of caring for me without squashing my spirit. I stayed home from school a lot. I never took Physical Education. Kids wrote their names on my cast. I think things went pretty well. I knew nothing else.

But my arm became more and more crooked with each break. Dr. Strong, yes that was his real name, was proud of me and saw that my hand worked just fine. He had no plans to straighten the arm because I was able to use it and my hand worked well enough to play piano and to tie my shoes. Then in fifth grade I started breaking my leg.

The city had dug a trench in our front yard. There were lumps of dirt everywhere and clumps of grass. I was up and running then, but fell one day over the clods of earth. This brought me a leg cast that went from top of the leg to the bottom of my foot. And in the middle of my shin, another crooked spot where I had broken a blood vessel. Then two weeks later while resituating myself on the lounge chair, I broke my arm again. Two casts! I felt like a freak.

Kids from school came to visit. The newspaper did a story about me with the headline, “Bad Breaks Mar Life for Mary.” I was famous. It was on the front page of the Cleveland Plain Dealer. I relished in my fame.

I yearned for the day the casts would come off. Each time we visited the bone doctor clinic, I hoped they would plug in that circular saw and set me free. I had to wait a long time. And when the casts finally came off, the arm and leg were weak. I limped around like a crooked crab. Things did not go so well. My skinny body and even skinnier leg broke again. I had to wear a brace. I had to wear a very uncool shoe. While other girls were starting to wear hip huggers, I wore saddle shoes specially made for bad legs.

Somehow I made it through sixth grade. I started keeping a diary. I fell in love with the Beatles. I kept singing and drawing. I dreamed of having boobs and hips one day.

Fast forward to high school. Only one break that I can remember during those years; again my right arm. I had a short reprieve. I studied algebra and got pimples like everyone else. I wanted to be just like everyone else. I tried to blend in. I graduated with honors and went to college. It was the 70’s. Bell bottom jeans. Folk music. The Viet Nam War.

Now I am in my sixties. I have weathered a stressful work life, a move away from the cold and snow of Ohio, and marriage. I remember those early years with wistfulness. I still can’t bend my arm. My leg is still crooked. After thirty years of work as a counselor I now get a disability check. I walk carefully in sensible shoes. I still fear falling. The last time I had a big fall I broke both arms and my leg. I ended up in a rehab facility.

Having breakable bones is my cross. It makes me different. It makes me strong, too. I can muster through pain like a linebacker who goes back into the game. I can empathize with people suffering with the pain of cancer or other illnesses that cut them off from others. I have an inner life, formed in reality. Sufficiently resilient despite the costs. Everyone has something.  I have this.

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