I raised my head, looked up at our reserved seats, and felt a stomach-punching flood of emotions: extreme embarrassment, palpable nervousness, unspeakable shame. This emotional combo was a familiar one to me, and it hit me hard as I faced the long and steep staircase that led to my school’s reserved seating area in the auditorium.
Along with my awkward and squeaky-voiced pubescence, Friedreich’s ataxia was beginning to show itself – probably at the most inconvenient stage of my maturation. Not that any time would have been convenient for a genetic disorder to begin suffocating my nerve cells. My balance and coordination had become noticeably handicapped, and I found myself looking in defeat at the impossible staircase before me. I was beginning to make a quick plan to spend the convention sulking alone in the lobby, when Amanda knocked me out of my brooding.
“Let’s go,” she said, seeing my defeat as I gazed at the stairs. “I’ll take your arm, and you can lean on me.”
It was an order, not a question. And it was exactly what I needed. If she had asked me if I had wanted her help, I would have declined.
“Oh no,” I would have said. “I’m fine.”
If pressed, I would have offered the solution, “I’d rather just sit in the lobby than fight the stairs. I’m fine.”
I was not fine. Amanda knew that.
Amanda had joined my school several years earlier. When I first met her in seventh grade, I had been struck by her individualism. At a time when I wanted so badly to fit in with the crowd of my peers, Amanda had no fear of standing out. She openly chose not to give into peer pressure in order to be cool among kids our age. Her preference for staying home with a few friends instead of partying probably helped her become valedictorian of our class in high school.
At that moment, in a raucous auditorium filled with teens and the smell of stale popcorn from past sporting events, she invited me into her world, not caring what others think, with her readiness to help, and her expectant, slightly irritated sigh.
When I gave in and silently let Amanda help me up the bleachers, I was still ashamed that I needed help, but I took my first step towards relying on others instead of just on myself. I embarked on the lifelong journey of becoming less egocentric, and began to join the club of not giving a fuck what others think.Friedreich’s ataxia assaults you subtly, almost patiently. At first, it’s a barely noticeable manner of unsteadiness in your walk that quickly makes you unable to run. Slowly, your walk becomes more and more affected. Stairs become an issue. Stairs without railings become an impossibility. As your walk continues to decay, you need more and more breaks, and you begin to need aids to keep you upright. No matter how hard-headed you are, or how averse you are to help, you will eventually require the use of a wheelchair – only for long distances at first, but, over time, for a greater and greater percentage of your day. Meanwhile, your hearing, vision, speech, and overall coordination decline, slowly and subtly. Diabetes is sometimes prevalent in FA, but the thing that shortens the life of someone with FA is that the heart — a muscle that loses its healthy nerve cells like all the rest of the muscles in the body of an FAer. Its beats become irregular and ultimately inefficient for sustaining life.
More and better information about Friedriech’s ataxia can be found at the homepage of FARA– the Friedriech’s Ataxia Research Alliance.
This knowledge would have been my fixation if I’d sat alone in the lobby, instead of joining my class in the nosebleed section for that convention.
Thank God for Amanda.
Her presence and character made me more willing to accept a wheelchair when I needed one, and I am forever grateful.
May 19 is FA Awareness Day. Since you now know what Friedreich’s Ataxia is, please help spread the word so that the possibility of a treatment or a cure becomes closer to reality.
Feel free to check out the movie The Ataxian, available on all platforms, which documents my buddies Kyle and Sean, two FAers as they attempt a nine-day bike race across America.
For FA Awareness Day this year, FARA is partnering with FARA-Australia in the Lend Us Some Muscle Campaign. (Get it? FA affects muscles!) There’s a matching gift on the line of $40,000. Any size donation you’d be willing to make would mean a lot to me. If you have Facebook, click here to make a donation. And if you can’t donate now, you can help by spreading awareness. Share this post.
P.S. I also accept candy for FA Awareness Day. That has nothing to do with FA Awareness; I just like candy.