The day was cruelly beautiful. It was the first time I had ventured out of the house in over a month.
I gazed out my van’s windows as tree branches and fields of grass whizzed by — vibrant, springtime green. The sky overhead was crisp blue and clear of any clouds. Everything reminded me of renewed hope.
I was headed to a physical therapy appointment. Normally, I would go these appointments weekly, but I hadn’t gone in two months due to the coronavirus pandemic. And despite the at-home exercises my physical therapist gave me, I noticed that my physical capabilities were weakening.
Sadly, recognizing more physical limitations is nothing new. Friedreich’s ataxia is callous, making me progressively more handicapped over time. As much as I and other FA patients would love for a treatment or a medication to stop its progression, no such treatment exists yet.
In the meantime, FA continues progressing, and I continue to lose abilities. It’s scary to acknowledge that my physical capabilities will degrade over time, no matter what I do.
It’s terrifying, actually.
Yet at the same time, physical therapy has benefits for FA patients.
It’s much less threatening for me to identify an external source to blame for my weakness. Otherwise, I’d have to recognize that the issue may be my own biology.
So, I blamed my new limitations on the fact that I haven’t gone to physical therapy in two months. I realized the importance of being in the clinic, with my therapist. At least I hoped that was the reason.
Because physical therapy is recognized as an essential business, the clinic has remained open. I decided to lift my self-imposed quarantine to resume my physical therapy sessions.
I took a gamble, not only by taking this trip but also by betting that this activity would be good for me. During the drive to the clinic, as I traveled farther away from my house, I wondered if it was worth it. Wasn’t further disability inevitable anyway?
Regardless, I already had decided. Maybe the odds of returning to my physical state of two months ago are unrealistic, but I would roll the dice. I am hardheaded, and after all, I’m not the first Cajun character known to gamble.
I arrived at the clinic, and my physical therapist met me outside. His white face mask and purple latex gloves seemed out of place in the idyllic weather of spring.
“Let’s get to work,” he said, opening the door to the clinic.
The session went as it normally did in the weeks before my absence. I was stretched and did various small exercises that seem trivial overall, but that wore me out nevertheless. At the end of the session, I felt the nagging pain of a good stretch and the forewarning that I will be sore tomorrow.
It was awesome.
I even had a little victory: I transferred myself from my wheelchair to the dry needling table with surprising ease.
Overall, though, I seem to have regressed in the past two months. I required much more assistance from my therapist than I used to. I value being as independent as I can, so that’s especially upsetting. But it’s not where the story ends.
I’m resolved to try to get back to that earlier state of functioning.
Maybe that’s laughably futile.
“See you next week,” I said as I left discouraged, but not beaten.
“Same time, same place,” my therapist said, closing the door to my van.
Sometimes in life we are dealt a losing hand. But it’s up to us to play it well.
Friedreich’s Ataxia News 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 another 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.
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