In the Waiting Room with FA

Before I had a smartphone to help me pass the time, I was OK. I was easily entertained in waiting rooms, whether I read outdated magazine articles or focused on a TV with the volume either blaringly loud or so quiet that I’d have to strain to hear it. Or I would fall back on my reliable source of entertainment: my overactive imagination, which varied between attempting to deconstruct lofty concepts in my mind, or finding pictures in the paint patterns on the wall.

No matter what I chose to do, I never got bored in waiting rooms. That’s a good thing for someone with Friedreich’s ataxia (FA) because we often find ourselves in those places.

There is currently no cure or treatment for FA. As patients, we feel empowered and inspired to take action by fundraising for FA research and participating in clinical trials. But we also have bouts of despair, when we feel that our efforts are futile. Being hopeful and being hopeless are two sides of the same coin we carry on our FA journey. This duality is evident as we sit in waiting rooms.

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It doesn’t matter what the waiting is for; there are plenty of waiting rooms in the life of a person with FA. Whether I’m waiting to see a neurologist, cardiologist, nutritionist, occupational therapist, TV news anchorwoman, business partner, or a member of the U.S. Congress, the rooms are eerily similar: brightly lit, with walls painted bland colors like eggshell or aqua marina.

I don’t know what to expect in waiting rooms. My apprehension has caused me a lot of stress in the past: I remember the stomach cramps and the sudden pressure at my temples, as if my head was in a vise grip.

I think my anxiety at the prospect of the unknown is a direct result of how I learned about my FA diagnosis. I received my diagnosis when I was an adolescent. At that time, I didn’t know anything about FA; even the name of the disease was unfamiliar. Honestly, I didn’t want to know. Whatever affected my coordination was an unknown monster that wreaked havoc on my 12-year-old self’s world.

Whenever I couldn’t foresee the outcome, I was forced to face the reality that I wasn’t in control. I became increasingly nervous and uneasy. Waiting rooms became a source of dread — I didn’t know what new reality I’d face when my name was called. I just knew it had the potential to change my life. And I wanted consistency.

As I grow older, that fear has quieted. It no longer feels like pressing anxiety; instead, it is a calm sense of anticipation. When I finally named Friedreich’s ataxia, the hazy monster became visible, but it wasn’t a monster at all — just a problem to solve.

Still, I find myself in a waiting room. My gaze drifts over the old magazines, the dull-colored walls, the static-y TV screen. I lose focus and begin imagining, turning over a coin in my hand; one side hopeful, the other hopeless.

Suddenly, I hear my name called. I head toward the door, not knowing what awaits me on the other side. A cure? A treatment? Further disability? Early death?

Sometimes not knowing the outcome makes it interesting. It is what it is.

Let’s see what comes next.

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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.