I wrote this two years ago, for my first creative non-fiction class. Today a doctor told me he would schedule me for surgery. This is my seventh, for the same condition.
Fifty-fifty, the doctor tells her. There’s a fifty percent chance her husband could pass it on. His father has it, and his father’s father, probably. His younger sister escaped, healthy except for the cigarettes she smokes, and his older sister died too young to know for sure. The doctor calls it genetic, like curly hair or long legs.
My mother doesn’t care. She wants a baby anyway.
Everyone else sits back on their heels in the storytime circle. My knee won’t bend that far, so I sit cross-legged, but as I grow, as the problem grows, I can’t even do that very well. I don’t notice it so much at first; my bicycle seat is higher than everyone else’s so the pedals can go all the way around; when my hand goes up in class I feel the tell-tale pop of bone caught in muscle, and pop again when I lower my arm; gymnastics is almost like torture – tuck and roll beyond my abilities.
Some people call it flexibility, but it’s out of my reach. I’m not athletic, but I wonder, could I, would I had it not been for -?
I can see it first in my hands, in my stubby broken nails; short fingers that grow crookedly and crack wickedly when I flex them. I’m never going to be able to play the piano.
I’m at least thirteen before I understand its name. The doctor, my doctor, calls himself a pediatric orthopedist, and keeps fat lizards and Highlights for Children in the waiting room where a tree grows through the ceiling. He laughs and looks like my uncle and wears Looney Tunes ties. We’ll buy him one next Christmas.
The doctor explains that it’s called multiple osteochondromatosis, but it’s not as bad as it sounds. This tricky devil hides behind many names, and is occasionally malignant, but not to worry, that almost never happens. He tells me I have bone spurs or bumps, extra growths usually around my joints (like something out of a science fiction movie, but not really.) He orders x-rays and the technician hands me an iron apron. Though I don’t know it then, by the time I’m twenty, I’ll have been x-rayed more than fifty times.
My ankles hurt all the time now. I have to stop to sit down while walking around the mall, in competition with my grandmother who has broken a hip. The doctor says, pointing out the bones on the x-ray, the tibia is wearing away at the fibula (or is it the other way around?) He wants to take the bone spurs out. Both ankles. One fell swoop, to get the ball rolling on the rest of my life. My mother agrees; I’ll miss less school this way. The doctor with Bugs Bunny on his tie says it’s just out-patient surgery, nothing to worry about.
It’s spring break, the day before Passover. I wake up in Hallmark’s Heaven on white clouds of Codeine, with vague recollections of putting on a hospital gown with ties I can’t reach, at an unreasonable hour in the morning, and turning my face away as the needle pierces my skin, the IV drip, drip, dripping icy, burning liquid into my veins. Punchy from nerves, I set the operating room laughing at my surely nonsensical jokes, until the count down begins: 100, 99, 98, 97…and before I know it, it’s time to wake up. Now my legs throb in twin fiber-glass casts with no room to breathe, and my mother hovers at my bedside, waiting to hand me my glasses.
They bring out a chair with wheels, built like a cage, so I can go home, but with both legs encased it’s easier said than done. A joint effort lifts me into the chair, and as soon as I sit down I can see the world in a different way. Everyone looks down on me, someone labors behind me to push me into position, and I think about the weight on my ankles and the nausea in my empty stomach. No matter how many times this happens, I will never accept the chair.
That’s it. All done. Now, that wasn’t so bad, was it?
Our house is not built for handicap access. By the time I make it into bed I’m ready to throw up. By dinner time I’ve been sick at least twice and my legs hurt worse than I can imagine. Frantic phone calls to the doctor result in a return trip and an all access pass to the mostly deserted surgical center at night.
The doctor says my legs are swelling and there’s no room within their prisons. He pulls a buzz-saw off the wall and calls it a cast remover. Next time, he says, he’ll stick to plaster.
The casts are split straight down the middle with a crack like snapping tree bark, as I watch, holding my breath, waiting for the moment where he slips and takes my leg off at the knee. He trusses me up with bandages to hold the severed pieces together, then wishes me goodnight and tells my parents to call if there are any further problems. My mother swears we’ll never do two for one again. Some bargain.
By the time school starts again I’m walking, albeit carefully, and with crutches. April showers bring plastic bags to cover my casts as I hobble my way through middle school, granted a few extra minutes per class to navigate the slippery stairs. The muscles on one side have seized from inactivity, and even after the casts are removed I limp around wearing Frankenstein’s boot.
I’m terrified, at first, to unwrap the bandages and see what the doctor has done. I don’t know what I expect, exactly – open wounds or a row of tiny black Xs like a lady’s embroidery. The skin is yellow from the iodine and the scars reddish-purple and raised. Apparently, the stitches are on the inside, though I’ll never understand how that works.
For the first time in my life I have a get-out-of-P.E.-free card, and the school mile which I have huffed and wheezed my way through for two and a half years becomes a thing of the past, prompting jealousy from my classmates as I sit on the sidelines.
They ask me what’s happened and I explain as best I can, rolling the term multiple osteochondromatosis around my tongue like a pro, watching their eyes widen and mouths fall open. It sounds worse than it is, I tell them, and soon they lose interest – but not envy for the girl who stops running and watches from the bench.
My doctor’s note is a golden ticket carried into high school, where every week I remind the teacher, and my fellow students, that despite my gym clothes, I’m excused.
I can’t, I say when they expect me to join in.
I see the accusations in their eyes. They’ve never seen me on crutches or in a wheelchair. My scars, still red, angry, and pencil-thin, are masked by socks. I can walk, skip, jump. They think I’m making it up, or at least exaggerating.
You mean you won’t.
He asks if I’m ready to go again. Today his tie might have Snoopy on it, or maybe Mickey Mouse. I ask if I really have a choice, and he laughs. The process starts all over again. The idea is that once I stop growing, so do they. I only need to remove the ones that bother me, and in a few years, that will be it. He continues with the one that goes pop in my shoulder.
There’s a large one behind my knee, right next to the growth plate. My doctor worries that it could stunt my growth, leave one leg longer than the other, like my father. When he figures I’m old enough, he schedules the surgery. The novelty has worn off; the dates blur together. I may be fifteen, I may be sixteen. I’ve lost my fear of needles and know to ask for anti-nausea medication in my anesthesia cocktail. Sometimes they stick a tube down my throat, but only if I’m going to be lying on my stomach. The doctor leaves a large ‘L’ shaped scar behind that spreads a little as it heals.
Three years later and it’s grown back as I’ve shot up another three inches. While that particular bump has been planning its return, the doctor’s left me a long scar on my hip where a chondroma grew and made sitting uncomfortable. By this point I can examine my own x-rays, amusing myself and my mother, playing ‘spot the bump’ while we wait for the doctor to turn up.
The bad news is we’ve switched HMOs, and the doctor with Marvin the Martian on his tie can’t be my doctor anymore. The good news is that he’s got a son in the same business, with the same taste in ties, who can.
Doctor Junior finishes his father’s job, also removing that bit on my femur that prevented me from crossing my legs. This is it, he promises. You’re done. You’re not growing anymore, so there won’t be any more surgeries.
My third doctor tells me the truth.
He says, during our pre-op appointment, that it doesn’t matter if I’m growing or not. He says that my muscles are constantly shifting as I do new things, and I may annoy bumps that didn’t bother me before. It’s entirely possible that this can go on forever. And even when the bumps are gone, they don’t always take the pain with them.
I reward his honesty by pointing out the spots on the x-ray that I want removed and he leaves me with five more scars to call my own and parathesia in my left leg. A year later my leg still hasn’t entirely healed.
My mother asks me if I resent her for choosing to have me, knowing as she did that there was a fifty-fifty chance I would have multiple osteochondromatosis. I think about the days I spent locked in a wheelchair or trapped in a bed; the sports I might have played and the martial arts I could have practiced; the scars I wouldn’t have; the questions people wouldn’t have asked; the defenses I wouldn’t have to give; the pain I wouldn’t know; and the lessons I wouldn’t have learned.
No, I say, still standing on my own two feet. Of course not.
Link of the Day: This is what Multiple Osteochondromatosis is.