Sometimes we prefer not to be seen. I know how that feels. Growing up, I loved being almost invisible, whether I was pretending to be a spy or playing one of my favorite games with my cousins, hide-and-seek in the dark. I liked the idea of blending into the shadows, losing my body — at least for a moment — and becoming one with the surroundings.
Socially, I tend to echo this; it’s clear that I’m not comfortable being the center of attention. I prefer to live on the periphery, and it seems that’s always been the case.
But I don’t blame my preference for staying away from the center of attention, my abhorrence of being the life of the party, entirely on my social tendencies — not even mostly. As my Friedreich’s ataxia (FA) became increasingly visible and symptomatic in my day-to-day life, it made me stand out. I couldn’t hide in the shadows when it took all of my effort to get to my next class without falling. I couldn’t easily play the part of a wallflower at high school dances as I awkwardly stayed leaning against a wall, even after the roaming herd of my classmates migrated elsewhere, leaving me — obviously — alone. This was opposite of the subtlety I craved.
The Friedreich’s Ataxia News forums are a place to connect with other patients, share tips and talk about the latest research. Join today!
I hated FA. I still do, as it is the appropriate reaction to a lethal disorder; but back then, that hatred was more than that. It was irrevocably linked with shame. I was ashamed that FA made me stand out in a crowd, that it made me needier than most. After high school, when I transitioned to a wheelchair, I’d arrive early to my college classes. I’d park my wheelchair and transfer to the seat of an ordinary desk in the classroom. I know now that there is a therapeutic benefit to doing as much physical activity outside of sitting in a wheelchair as you can. But I was not thinking of the therapeutic benefit. I thought that by not sitting in my wheelchair, I could more easily blend in with the rest of the class.
Linking shame and disability is a terrible, but normal, consequence of life with special needs. I fight bitterly against this concept overall, but when I’m alone and frustrated, it’s easy to see my limitations as personal failings.
I know that’s wrong. I know that’s illogical. But it’s there: an aggravating voice in my head that I’m trying to quiet.
I was about to brush my teeth and get ready for bed a few nights ago when my phone rang. I reached for where it usually rests, beside the seat cushion on my wheelchair, and saw on the screen that it was Kyle, one of my best friends. I answered the phone, and we chatted for a bit. Kyle Bryant is probably the most well-known person with FA and a superstar in all that he does. I’m not much for talking on the phone — my calls tend to be brief — but I love checking in with my good friends now and then.
Our conversation centered around our current goings-on. The Two Disabled Dudes Podcast came up during our chat. The podcast that Kyle co-hosts along with our friend Sean Baumstark, another person with FA, focuses on how best to navigate life with disability, told by two guys with disabilities. I occasionally help them with writing their episode notes.
Kyle amazes me by broadcasting his speech when the struggle to speak clearly is one of the most prominent symptoms of FA. I tend to avoid recording my voice. Maybe it’s a combination of wanting to be invisible (inaudible?) and some stupid shame I still encounter with my disability. But I think that’s a strength of Kyle’s: broadcasting his voice for the good of others, regardless of his insecurities.
On our phone call, Kyle mentioned off-handedly that the 2DD podcast on Instagram sent me a birthday wish. (He is sneaky like that.) I hadn’t seen it because I’m not very active on Instagram. I am not a very picture-oriented guy. I’m not a big fan of taking pictures without someone else in the frame with me. I especially hate selfies; part of me still doesn’t like to be seen in my wheelchair.
I know that is stupid. If someone else told me that, I’d tell them how ridiculous that way of thinking is. People who use wheelchairs should not be ashamed; they should not be invisible. As a person, by default, you are worthy of love, despite — and even because of — your brokenness. Maybe it’s time for me to take my own advice.
I may require a wheelchair to get around. I may not speak as clearly as I’d like, but I am trying to be an OK person and to be OK with myself.
You deserve to be seen, and maybe I do as 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.