It was a good day at physical therapy. I was exhausted from doing leg, arm, and back stretches with the help of my physical therapist. I sat up on the matted floor, legs stretched out in front of me.
“Look,” I said 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?”
He looked and said, “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. But for some reason, I understood.
Kind of like my heart. Kind of like me.
Trying our best to function despite Friedreich’s ataxia.
I go to weekly physical therapy appointments because I’m trying to thrive these days, pushing the limits of my abilities. This is a new development. Until recently, I thought surviving was all that mattered.
In my late teenage years, I read about the stark reality of FA: unforgiving, untreatable, and incurable. I felt imprisoned and shackled inside my own degenerating body. With no control, I felt like I was floating without purpose toward my eventual fate.
My view of my body shifted and warped. My legs were no longer viewed as legs. They didn’t propel my body. They were weight-bearing, immobile pivots, useful only during transfers from my wheelchair. Apart from that, they were pathetic.
I witness my hand dexterity declining. I cannot write in cursive, use chopsticks, or cut steak.
It is becoming more difficult to speak and swallow.
My body seems to be breaking down. I could easily 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 it all too well. We are strapped in a car that is always breaking down. Cursing the car feels good. It is 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 can’t stop thinking about a TED Talk that I recently watched. Eleanor Longden shared the story of her schizophrenia. She began to hear voices in her head when she went to college. She grew to hate them as they became louder and more consistent. She said that she once tried making the voices go away by taking a drill to her head.
Her act of self-harm was shocking and extreme, but I recognize the emotions leading to it. Whether it’s schizophrenic voices or symptoms of budding ataxia that interrupt your life, we almost always vilify them.
How can they just show up and ruin everything?
They are evil. They must be removed from our lives.
Longden eventually recognized that the voices in her head were results of past trauma, and that her symptoms were not vile intruders out to destroy her life. She began to see them with compassion and realized that the 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, your capabilities, and your limitations. This is especially important for FAers, or for anyone with a physical limitation. Your body, like you, is functioning as best it can.
Give it credit.
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.