Simple questions help me keep life with FA in perspective

How a few casual conversations prompted a columnist to reassess his priorities

Sean Baumstark avatar

by Sean Baumstark |

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I’ve recently been asked a couple questions that have stayed on my mind. As someone with Friedreich’s ataxia (FA), I receive many questions regarding my mobility device and overall disability.

I’m often asked, “Why do you use a walker?” And the politically incorrect way of posing the same question, “What’s wrong with you?” Both are loaded, and my response depends on the inquiring person’s body language and tone. I can understand genuine curiosity, and I’m not bothered when I think someone is curious. But either way, such interactions stay on my mind for a long time.

I was in line at Starbucks last week for my morning cup of cold brew, and an older gentleman, referring to my walker, asked, “So how long do you have to use that for?” I’m pretty confident he wasn’t prepared for the brief yet detailed response I gave him. I didn’t know this man personally, but I recognized him as a fellow regular customer, and his inquiry seemed to be coming from a place of curiosity. This opened the door for a short conversation about FA, and we both seemed to appreciate the interaction.

I wasn’t offended at all by the gentleman’s inquiry. However, I was challenged by the realities of my response, given the prognosis of FA. With the disease causing progressive damage to my body, it’s likely that my mobility needs will increase with time. This isn’t news to me, but the realization hit me differently this time. Rare disease or not, life is short, and my abilities are diminishing, so I need to remain focused on some of my aspirations.

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Adjusting to new mobility aids as my FA symptoms progress

Another recent question came from a co-worker. As I was preparing to leave for the day, she asked, “What TV shows are you watching right now?” This is generally a pretty safe question. However, our conversation opened a floodgate of emotions that kept me from writing for a month.

I’m paraphrasing some, but our conversation started like this:

Her: “What TV shows are you watching right now?”

Me: “I don’t really watch TV.”

Her: “Oh, why not?”

Me: “I don’t like to give up time for TV.”

Her: “Why not?”

Me: “I don’t know, I just feel like I always have a lot to do, so I find it hard to justify sitting in front of the TV for very long.”

Her: “Really? What kind of stuff do you fill your time with?”

You can imagine how a simple question turned into a 10-minute conversation.

Doing too much?

Some people are good at staying productive, while others are good at utilizing downtime effectively; both can be valuable. However, everyone has the same 24 hours a day. Our conversation helped me realize that, sometimes, I have too much to do, or too much I try to do.

Over the past three months, managing my time and priorities has been challenging, and I’ve often felt overwhelmed. Many things are important to me, and I enjoy everything I’m privileged to be a part of. There’s always a supply of things to do, including my job, this column, my weekly podcast, “Two Disabled Dudes,” traveling, and maintaining important friendships.

Unfortunately, I found myself continuously exhausted, easily frustrated, and irritable, and I realized I’d rather scale back on my commitments than shortchange myself or essential relationships.

The ebbs and flows of managing life with a rare disease will likely never get easier. I can’t change the past, and some commitments, like my job, aren’t optional. However, taking the time to assess how and where I spend my energy is vital to my overall health and ability to accomplish my goals.

I’m grateful for these simple questions that helped me realize my circumstances. I’m reminded that there are no good excuses, only reasons and decisions that determine how my days unfold.

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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