Different Bodies, Still Equal

I realized the other day that I am missing a collarbone.

It’s something I’ve been thinking about lately. Parts of the body that appear in my writing and reading: collarbone, sternum. I memorized each term for an exam in high school — probably one of those health classes I took to fulfill a graduation requirement — yet my mind blanks. I can’t even remember their approximate location, what they look like, their function. I take to Google.

Collarbone, noun: a long bone that serves as a strut between the shoulder blade and the sternum or breastbone.

Sternum, noun: a long flat bone shaped like a necktie located in the center of the chest.

I try to visualize my collarbone, but I struggle to map its location onto my body, with all its … irregularities? Peculiarities? The process of naming is always awkward. I breathe with my stomach, pushing my midsection outward with every inhale; my rib cage is a protrusion, the bones sharp, skin stretched tight and uncomfortable. Nothing about my body is as it should be. I imagine finding the thing with my fingers — poking, prodding, till I stumble across it. That, too, is hopeless. I don’t have the strength to lift my hands, to reach the column of my throat.

I’ve seen images of collarbones, so I know, technically, what they look like. In a way, they resemble my rib cage: curl your fingers enough, and the nails will catch on the bone, making me wince, swat your hand away. Still, my conceptualization feels … wrong, disconnected from its whole. Something you’d find on a corpse, bleached and forgotten.

I start seeing other people’s collarbones, as if for the first time — my personal care assistant, her 1-year-old daughter’s fist curled against it. Almost to my surprise, my mother has one too. I stare at it during dinner, memorize how it flows into the curve of her shoulder. And there, right above the sternum, the hollow of her throat: another thing I don’t have.

Later that night, I stare at my bedroom ceiling while my dad pumps medicine through my G-tube. “You know I don’t have a collarbone?” I ask, tugging a laugh from him.

“Sure you do.” He pokes it a few times. “See?”

It occurs to me that, out of the two of us, he probably knows better than I do: He has the perfect vantage point, towering above me when I’m in my wheelchair. I peer down at myself, trying to figure out how I missed it the dozens of times I went searching. The bone burns where he touched it, as if suddenly alive, desperate to be acknowledged.

“Oh,” I say. Do I laugh? I don’t remember. “That’s that, I guess.”

That was a few days ago. I’ve already forgotten where my collarbone is in relation to the rest of me. After 22 years in this body, it’s easy to think I know it well, only ever to be surprised. I spent so much time thinking I didn’t have one, that maybe I was born without collarbones, a casualty of SMA. I kind of like it this way, though, hidden away. The only way you’ll know it’s there is if you go searching — and even then, like me, you might not find it. There’s something romantic about the idea that bodies can differ, that differences don’t always equal loss.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.