This isn’t where I’m supposed to be, I thought. My power wheelchair’s mechanic whine echoed through the underbelly of the LSU football stadium, known by Tiger fans as Death Valley.
As I rolled through the Valley of Death, the lump in my stomach got heavier the closer I got to my classroom. My constant erratic jerks while driving my wheelchair was proof of my ataxia; I was 22, and even though it was five years since I transitioned to living almost full-time using a wheelchair, I wasn’t very smooth at maneuvering it.
I took this route to grad school classes every weekday from my apartment in Baton Rouge. I was in my second semester and wondered if I was in the right program. I was meeting a high school student who I had to “interview.” This was my first counseling-like scenario, and I doubted myself. Thanks to Friedreich’s ataxia (FA), I’m really insecure about my own functionality. Could I really be in a position to benefit someone else? I didn’t think so.
I entered Peabody Hall, then motored down the hall to my classroom. Before I knew it, I was face-to-face with a high school student I had never met before. I put on a guise of confidence, of know-how — or at least I hope I did.
The idea was to get a general interview with a student for my child counseling class. The student was very forthcoming and readily gave his name, grade, and all other identifying information. As I continued asking broad, general questions like, “What’s your favorite subject?”, he surprisingly began to open up to me, telling me rather personal things.
I held up my hand. “I just want to let you know,” I said, pausing him for a second. “I really appreciate listening to all of this and I’m looking forward to listening to more. But I want to remind you that I am just a student. You don’t have to tell me anything personal.”
He glanced up at me from his chair. I could tell he was a quiet guy, so I didn’t want him to feel forced to talk to me about anything.
“No, it’s OK,” he said. “I trust you.”
I’m not sure what I did to gain his trust in the 15 minutes that we met. But his words made my day. I wondered if counseling was something I could do, if I could really fit into the role of trustworthy therapist.
I smiled as I left my first interview as a counselor-in-training. I put on my headphones and went to the on-campus bookstore feeling unbelievably happy. I felt trustworthy. I felt capable.
Insecurity is a real challenge of mine. Maybe it has to do with the progressiveness of FA, because it seems to be a common echo among all FA patients. As our physical abilities become more and more limited, our dependence on others increases. Since we rely on others more than most able-bodied people, our self-worth seems to evaporate. At least it is that way for me.
It’s important for me to recognize what I can do, regardless of Friedreich’s ataxia. I can still listen to others. I can still talk them through whatever hardships they may face. Maybe I can still matter to others.
And if I can, so can you.
My friend Dylan spent the day with me last Saturday. He and his girlfriend drove an hour to go eat burgers and catch a movie with me. I hadn’t seen him in a while. He had received his graduate degree earlier last year in international business management from Boston, with time spent abroad in both Costa Rica and London.
We had a great time catching up. I pointed out that he was now the age I was when I first met him. He pointed out that we were both getting old, and I was getting a little gray in my beard.
Getting older, as aggravating as it sometimes is, is a privilege denied to some FAers.
So, here I am, with my graying beard, having a good time with my friend for life, whom I met when he was a high school student in a practice counseling interview. I’m not completely free of insecurities, and I don’t know that I’ll ever be. But moments like these remind me that maybe self-worth isn’t wrapped up in physical independence.
Maybe I’m right where I’m supposed to be.
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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