It was a good day at physical therapy. Outside of my wheelchair, doing leg, arm, and back stretches with the help of my physical therapist, I was exhausted. I sat up on the matted floor, legs stretched out in front of me.
“Look,” I pointed out to him, “See how my foot doesn’t stay upright when I sit, but leans to the side? That bugs me. How can I fix it?”
Dr. Landrenau looked. He told me, “I’m no neurologist, but I don’t think there’s anything to fix, unless it becomes painful. It flops to the side because it is not used to walking.”
I am normally frustrated with my body when it shows the detrimental effects of my ataxia. For some reason though, I felt understanding.
Kind of like my heart. Kind of like me.
Trying our best to function despite FA.
I go to weekly physical therapy appointments because I’m trying to thrive these days, pushing the limits of my own physical abilities. This is a new development. Until recently, I thought that surviving was all that mattered.
Upon reading in my late teenage years the stark reality of FA — unforgiving, untreatable, and incurable — I felt imprisoned. Shackled inside my own degenerating body. With no control, I felt like I was floating without purpose towards my eventual fate.
My view of my own body shifted and warped. My legs were no longer viewed as legs. They didn’t function in propelling my body, but were only useful as weight-bearing, immobile pivots, only useful during transfers from my wheelchair. Apart from that, they were pathetic.
Sometimes I witness my hand dexterity declining too. Not as much as my legs, for sure, but… Writing in cursive, using chopsticks, and cutting steak are abilities I cannot do.
Also, a gradual difficulty in my ability to speak and swallow grows.
My body seems to be breaking down. I could easily to hate it.
And… I did.
Hating your own body may seem foreign to many people, but those of us with disabilities or rare disorders understand this all too well. We are strapped in a car that breaks down evermore. Cursing the car feels good, feels satisfying. We continue criticizing it until it stops functioning altogether and we’ve reached the end of the road.
After a decade of that way of thinking, I realized that I wasn’t a passenger cursing the car.
I was the car, cursing myself.
Constantly criticizing myself seemed detrimental and unproductive.
This can’t be what a good life looks like, can it?
I watched a TED Talk recently I haven’t stopped thinking about. Eleanor Longden explained her personal story with schizophrenia. She began to hear voices in her head while she went to college. As they became louder and more consistent over time, she grew to hate them. She yearned to be rid of them, and admitted that she once tried making the voices go away by taking a drill to her head.
Her act of self-harm was shockingly extreme, but I recognize the emotions leading to it. Whether it’s schizophrenic voices or budding ataxia that interrupts your life, we almost always vilify those strange symptoms.
How can they just show up and ruin everything? we seem to think.
They are evil, and must be removed from our lives.
Eleanor reached a point in her life when she recognized that the voices in her head were results of past trauma, that her symptoms of schizophrenia were not vile intruders set to destroy her life. She began to see them with compassion and realized that her voices should be approached with understanding.
Maybe my legs aren’t positioned correctly because they haven’t been walking, not because they are wrong and broken.
Be compassionate with yourself, with your own capabilities and limitations. This is especially important for FAers, or for anyone with a physical limitation that they didn’t ask for. Your body, like you, is functioning as best it can.
Give it credit.