This is the pond where I learned to skate as a child. The pond in the story was far bigger than this one! RLM
I sat on the cold log lacing my skates. I could feel the icy breeze blowing in from the pond surface on my reddened cheeks and earlobes, the only parts of me that weren’t thoroughly covered in damp wool. Struggling to stand, wobbling away as always, I made my way to the edge.
The translucent ice was bumpy and rutted, especially at the edges where the small children came and went and dug their picks in. The further away from the edge, over the deeper water, the clearer the ice became. There was a smoother feeling and look of clarity where no one else had been. I glided over the bumps towards the darker ice, loving the freedom that skates gave me.
A group of my friends were not far away. I skated up to them.
“C’mon! We’re going all the way to the end!” and off they went in a flash of blades and chatter. I took off after them, determined to keep up, determined to stop the unstoppable wobble in my ankles. I knew I had about an hour, tops, and then I’d either twist my ankle, fall, or both.
I didn’t talk about it anymore unless I really hurt myself. My parents just said, “You need to skate more and strengthen your ankles.” But I was plenty strong. My legs could hike and walk and bike for miles, and did, every day. I was a free-range kid who lived outside whenever possible. I knew deep in my heart that muscles were not the problem, but I had not the words or the knowledge to know what was.
Earth Wind and Fire’s ‘September Song’ pulsed out from the sound system. “Come on! Let’s get out on the dance floor!” I jumped up to join my college friends and get the party started. My beautiful new platform clogs and I were ready for anything, except me falling off them. Which, of course, I did. Repeatedly, in any number of situations, until I finally learned that my ankles were not going to let me wear those kinds of shoes.
It was a beautiful spring day. I was with a troupe of Morris Dancers, having the time of my life, entertaining the crowds in Richmond, Virginia who’d come out to see us welcome in the spring. Most of the time we danced on pavement, but just now we were parading over to do a mass dance on the lawn under the statue of Robert E Lee (yes, the one that recently came down.) I capered up, leg bells jingling. Coming down my right foot landed in a hole. Mole sized. Just enough to catch my foot so well that my ankle twisted once in each direction before I was able to free it.
That double injury was enough to finally send me to a doctor, who sent me to a Physiotherapist, who kept me Morris dancing for a few more years as long as I always wore a brace on that ankle. But no one could explain why my ankle was so weak, other than telling me I’d already sprained it so many times that my ligaments were loosened.
The resistance I encountered throughout my life to being a person living with EDHS* was simply stunning. My hypermobility was never acknowledged, never considered, always discounted. The numerous dislocations, back injuries, stomach upset episodes – all of it – met with blind resistance from doctors and family alike. I didn’t hear the words EDHS until my late 30s. I had to be in my 50s to finally find out that literally everything that had every been wrong with me was all completely interconnected by a collagen disorder.
Years later I’m still angry about this – but now when I encounter a resistant doctor, I tell them what I have. I make them learn about it. I refuse to see physicians or somatic therapists of any kind who don’t understand.
I can resist, too.
*Ehlers-Dahmlos Hypermobility Syndrome
For more information:
https://www.ehlers-danlos.org/what-is-eds/
Research shows men in chronic pain tend to be regarded as “stoic” while women are more likely to be considered “emotional” and “hysterical” and accused of “fabricating the pain.”
Research shows women’s physical pain is also often attributed to psychological causes.
- Lindsey Bever, The Washington Post, 12/13/23, How Doctor’s Dismiss Women’s Pain
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