Sometimes, the Hard Parts of FA Show Up Behind Closed Doors

Everyday tasks can turn into trouble out of the blue, to a columnist's frustration

Sean Baumstark avatar

by Sean Baumstark |

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I rarely have the foresight to make a note about something I want to write about. Instead, I often sit and stare at a blank document. While sitting and staring, I replay the experiences I’ve had over recent weeks, trying to identify something interesting to dig into.

Although I never introduce or think of myself as a writer, I’m constantly plagued with writer’s block. Today, however, I’m not struggling to identify my topic. But sadly, I’m struggling to find the right words to address it.

I was surprised when I was diagnosed with Friedreich’s ataxia (FA) over 15 years ago. Of course, I knew something was abnormal, but I didn’t expect to hear words such as “progressive” and “no cure.” Although it took some time to wrap my mind around the prognosis, I was optimistic from the start and committed myself to doing as much as possible while I still could.

A month after my diagnosis, I bought a bicycle to help raise awareness of FA and raise money for research. Then I started hiking with a few friends and fell in love with accomplishing things under my power. Finally, seven months after my diagnosis, I ran a half-marathon.

My muscles and ability to control my legs have deteriorated significantly over the years, and today, I won’t even think about running.

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My Body Is No Longer an ‘Instrument for the Accomplishment of My Will’

However, many people who know me say I don’t let the circumstances of FA dictate how I live. Even with a fractured hip three years ago, I worked hard to regain strength and get back on my feet, literally and figuratively.

Those significant situations, be they climbing mountains or recovering from broken bones, are the easier test of my persistence.

The more complicated tests show up behind closed doors.

I had one of those experiences just the other night while brushing my teeth. I started using an electric toothbrush years ago after realizing that my tendency to jam my toothbrush into my gums was an unfortunate side effect of FA. I’m a fan of my Sonicare toothbrush, and I’ll never go back to a manual brush, even if a cure for FA reverses the damage it’s done thus far.

Everything was working as expected with my brushing process, except for me. Standing in front of the sink, I felt myself losing balance. With one hand holding my toothbrush spinning at what felt like 50 revolutions per minute, I was left with the other hand to catch myself from falling. My free hand couldn’t do the job, so my brush-holding hand stepped in as reinforcement.

That hand wasn’t directly on the power button of my toothbrush, so as I used my elbow to lean against the wall, the powerful toothbrush was removed from the confines of my mouth while still running. That mini power tool began flinging toothpaste all over the place, fiercely vibrating so much that it caused me to think my life was out of control.

Toothpaste was everywhere.

If a friend had witnessed this event unfold, I think I would’ve laughed and moved on. However, once I regained my balance and turned off my brush, I stared at the chaotic results and felt upset.

I was frustrated with the mess I now had to clean up and the time I had to spend doing so. I was frustrated with having to start over with my nightly brushing and the time I’d lost in the process. Finally, I was frustrated because the whole scene seemed so ridiculous all by itself. But the reality is that moments like this happen often, and they remind me that some of my abilities are out of my control.

This is where I struggle to find the right words — the words that capture just how annoying FA is while still not allowing it to consume my mind or cloud my perspective on an otherwise wonderful life.

I know there is always something to write about, but I hate giving credit to something as devastating as FA.

Note: 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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