Steady Unsteady

Once, I was leaving a doctor’s appointment and saw an elderly woman fall. She tripped over her own feet. She snapped her wrist. I sat on the ground with her until help arrived, encouraging her not to look at the broken wrist, dissuading her from getting up and rushing into her own appointment, telling her everything was going to be alright. And, even though she was probably fifty years older than me, I felt more in common with her in that moment than I have felt with most people my own age in my life.

Fun fact about me: I hate falling down.
I’ve had my legs buckle in crowded rooms and instantly became the center of embarrassing levels of concerned attention. I fell in the dark in a field once and laid there covered in mud unable to get up for a cold, damp length of time. I’ve collapsed on my kitchen floor, helpless until my husband came home hours later.

When I was diagnosed with Ehlers-Danlos the geneticist told me I should bike to strengthen my legs and work on my balance. So I bought a bike. Today I tried to ride it and I learned a few things.

  1. “Like riding a bike” is kind of a bullshit expression. Shit’s tough, y’all.
  2. My balance is way more screwed up than I realized.

When I was a kid on a bike I didn’t fully understand how the brakes worked so I would stop by bailing off the bike into some prickly bushes near my house. There was a patch of sand in the street left from winter snows that I used to drift sideways at high speeds, reckless of how often so doing took the skin off my knees. I lived as a happy collection of scrapes and cuts. Fearless. Unbreakable.

Every year since I have become a bit more physically breakable, a bit faster than my peers. Just like that old woman on the sidewalk. It may be annoying when I start tipping sideways for no reason on my feet, but when the same happens on a bike it is unnerving. Any illusion of control I create on my feet with canes and frequently sitting down evaporates in the saddle of a bike where those options are not available. Between POTS and Ehlers and Lyme I feel a near-constant sensation of my skeleton trembling inside my skin and I’ve gotten used to that. My skin crawls like its covered in ants and I’ve gotten used to that too. The floor sways under me while I walk and I’m almost used to that, although it does still throw me. Sometimes - or if I’m honest, often - I feel a little crazed by the combination of tremors and pain, lightheadedness and nausea. I hold myself together with the reminders I’ve always repeated.

This is as bad as it gets, and you’ve done this before.
You’ve done this before.
It hasn’t killed you yet.
And this is as bad as it gets.

My very cells may be unsteady. But I’m steady. Held up by breath after breath after breath after breath. Like wind on a bike.




Successful life with chronic illness in poetry and prose.

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Amanda Malone

Amanda Malone

Successful life with chronic illness in poetry and prose.

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