I have a confession to make: The part of my Friedreich’s ataxia diagnosis I used to be most grateful for has now become something I question. Is it a good thing that while the rest of my body breaks down, my cognitive function remains the same?
This may be melodramatic, but it’s true — I sometimes feel that my body is a prison. With an untreatable disorder, it’s hard not to feel that way at times. Maybe you see your body as a prison, too.
Early in my diagnosis, I read that although my thought processes would remain undamaged, the rest of my abilities would be compromised due to the effects of Friedreich’s ataxia. Though the news was mostly devastating, I saw it as a small comfort, a little victory, that I would retain mental abilities.
At least no matter what happens, I’ll still be me. Still sappy, sarcastic, awkward, and pensive.
Nevertheless, there’s little comfort in being a prisoner. My functioning mind can do nothing but watch as my capabilities increasingly erode. Slurred speech, impaired vision, and poor hearing make it easy for others to assume that my mind is affected as well.
The truth is that overall, FA has no effect on mental capacity. (Research has shown that FA affects some aspects of cognition such as processing speed, but it doesn’t affect personality or intelligence.) Would it be less tragic if it did though? Would ever-increasing disability be easier to bear if I were less aware of it?
It’s terrible to see life through the barred windows of a prison, whether you’re locked within physical walls or feeling trapped in a deteriorating body. For most of my life after diagnosis, I didn’t see a way out. I believed my life would end in hopeless confinement, and I couldn’t see an alternative.
Desperately seeking some sign of hope, I noticed that history is filled with stories of famous prisoners whose time in captivity is connected to achieving their goals. Galileo was placed under house arrest for teaching that the Earth was not the center of the universe. Saint Paul was sent to prison for going against the religiopolitical norms of his time. Joan of Arc was imprisoned and executed for her role in the Hundred Years’ War in France. Martin Luther King Jr. was arrested for protesting the treatment of black people in America. Nelson Mandela went to prison for trying to overthrow a tyrannical and racist government.
Though these historical figures are all heroic, not all of those whose plans were put into motion because of captivity are viewed favorably. For example, Hitler wrote his manifesto, “Mein Kampf,” during a stint in prison after trying to overthrow the government in Bavaria.
Whether a person is a saint or a monster like Hitler, one lesson is clear: Being imprisoned can’t stop a person from striving for their goals.
But then I ask myself about my ultimate goal: What kind of legacy do I want to leave?
I hope to leave behind a sense of empathy toward the outcasts, and edge the world a little closer to the awareness of Friedreich’s ataxia, as well as finding a treatment.
Your own goals may be similar or totally different. Maybe you want to be irreplaceable at your work or to leave family and friends with the knowledge that they are loved.
Whether you find yourself literally imprisoned or you feel trapped in a situation you can’t control, your story is not over. History teaches us this lesson over and over.
The prisons we find ourselves in can be a source of inspiration for achieving our goals. Even if those prisons are our own bodies.
I previously wrote that although my body is failing, I’m not hopeless. Sometimes I need to be reminded of that.
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.The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
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