Last week, my ice skating coach asked me, “You seem pretty athletic, so did you have other issues [with hypermobility] when you were younger?”
I stared at her in disbelief, both flattered and conflicted. For the first time in my life, a coach was calling me athletic. My inner critic cackled. My nervous system ramped up to argue with her until she acknowledged my disabilities.
Sure, I competed nationally in dog agility despite being allergic to exercise, and even appeared on ESPN as a disabled athlete. However, I certainly didn’t describe myself as agile or athletic. My circulation and proprioception were so bad, I couldn’t safely use stairs for five years. Brief exercise required impeccable planning and recovery.
Remember, she didn’t know you before remission. You did just skate 6 days in a row, only taking a day off for skiing. Just answer the question, and brag about it later.
Ironically, part of the reason I don’t identify as athletic is because I had so many hypermobility issues when I was younger. I didn’t know much about Ehlers-Danlos syndrome until 2017, at age 31, two years after my mast cell activation syndrome (MCAS) diagnosis. My injuries were so painful, strange, and shame inducing that it was easier to believe I was bad at sports.
Bowling and volleyball induced searing pain in my wrists. In gymnastics, I impressed my coach with a front handspring, performed it 15 times consecutively, and then couldn’t walk the next day. Similarly, I displayed a natural ability for hurdles, practiced one day with the track team, and couldn’t walk the next day. In tennis, just as I was starting to enjoy myself, I developed inflammation around a nerve between my toes. Ice skating provoked so much pain and numbness in my feet that I quit, after being accused of faking it.
When I entered remission, I was so relieved to be free of pain, weakness, and fatigue that I launched back into all the sports without expectations. However, when I got up on a surfboard on the first try, I began to question if I really was bad at sports.
Remission has forced me to reconcile my identity, and consequently, heal past trauma. I am grateful for all the sports I played growing up: soccer, softball, ice skating, swimming, gymnastics, dance, volleyball, track and field, tennis, and basketball. Rediscovering my love of ice skating has been one of the greatest gifts of remission. Maybe soon, I’ll even be able to call myself athletic.
Recently, I was digging through a memory box–with compassion, not sadness. I found an old letter awarding me a scholarship to college… from the local athletic association. Then I found another old letter awarding me a scholarship to college… from the local hospital. How on brand.
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