The means of discovery vary—someone sitting next to me on the bus looks at my legs a little too closely, an unsuspecting friend grazes my knee, a gym teacher asks for my medical history. By now, this is routine. I’m used to their giggle/stare/nosy questions, used to the rush of heat to my face as I try to shrink away, to make myself smaller. To avoid.
Stranger: You have what?
Me: Um, extra bones.
Me: I mean, they’re not really “extra” bones. They’re bone spurs.
Me: Like where a normal person’s bone is straight, mine has a bump.
Me: It’s genetic.
Me: …so this is fun.
Hereditary multiple osteochondromas (HMO) is a rare medical condition in which bony spurs develop on the bones of a child. More specifically, the spurs are benign bone tumors that appear in areas of active bone growth.
The child in question suffers from bones that are not content with just one expansion. Bone breaks through bone.
In elementary school, my peers generally responded with a frightened giggle and sticky fingers grabbing at my skin. Having since grown up a bit, responses vary from a polite “Oh!” to a genuine “What the fuck?”
My eighth-grade science teacher, Ms. Riley, told us that change over time is an important consideration in any scientific experiment.
Frequently asked questions (in regard to my bones):
“Does it hurt?” (Answer: Spurs can cause pain or numbness, vascular compromise, and irritation of tendon and muscle. Alternative answer: Depends on the day. Alternate alternative answer: It hurts like a bitch.)
“Can I feel?” (Answer: Sure. Alternative answer: No thanks. Alternate alternative answer: Get your hands off me.)
“Is there a cure?” (Answer: Surgery, physical therapy, and pain management are the only options available to HMO patients. Success varies, and despite treatment many patients struggle with pain, fatigue, and mobility issues throughout their lives. Alternative answer: No. Alternate alternative answer: I wish.)
HMO is estimated to occur in 1 in 50,000 people. My mom, my sister and I make three in a city of 600,000.
The other nine remain unaccounted for.
The backseat was dark, and I remember being acutely aware of how close we were. My exhale lifted his hair off his forehead.
In the middle of telling a story, his hand brushed over my knee. I felt him feel it, felt him freeze. Shit.
“Surprise!” I said when he didn’t say anything. I smiled, trying to joke it away.
“Yeah, I wasn’t expecting that,” he said uneasily. “What is it?”
I recited my usual speech in record time. “Oh,” he said, “weird.” I wanted to shrink away, but there was nowhere to go.
“Let’s not talk anymore,” I said, leaning into him.
When I had my first surgery, I was eight years old. I only remember pieces—astronaut pajamas, crying as I held my stuffed animal, the medical students coming by my room afterwards.
“You’re very rare,” one told me. I didn’t know what to say.
A patient with HMO has a 50% chance of passing the disorder to their children. “I’m so sorry,” my mom will say to me on bad days. “I did this to you. I’m so sorry.”
My sister has had four surgeries, and is contemplating another one. The doctors are watching one of my spurs to see whether or not it’s going to interfere with my artery. Luck doesn’t run in our family.
“It’s okay,” I say, “just hand me the ice pack.”