Good Advice From Others Helps Me Navigate Disability

There is wisdom to be gained by talking to others with a similar condition

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by Sean Baumstark |

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Not long ago, I had the pleasure of recording a Zoom session with fellow Friedreich’s Ataxia News columnist Kendall Harvey. Kendall wrote a column that inspired my podcast co-host, Kyle Bryant, and me to dig a little deeper and share Kendall’s perspective with our listeners. Kendall, Kyle, and I all live with Friedreich’s ataxia (FA). However, FA affects each of us differently.

Kyle uses a wheelchair full time, and Kendall and I both use walkers when we’re out in public. I can only assume that our different stages of progression and life experiences shape our perspectives. Despite having many things in common, our experiences with FA and our views on disability are different.

The more I read from other rare disease patients and talk to people with disabilities, the more my understanding expands and my perspective grows. My curiosity is piqued, and I feel a desire to learn and prepare for circumstances I may face.

Perhaps this is where that wisdom I wrote about awhile back comes from.

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Push and pull

I won’t do Kendall’s column a disservice by rehashing it here, and I don’t want to give away any spoilers about our podcast that features her. (When you’re finished reading this column, give episode No. 197 a listen.)

However, our conversation has been on repeat for me lately, both literally and figuratively. In the literal sense, editing our episodes at times calls for listening to recordings over and over. And figuratively, as the last couple weeks unfolded, many of the sentiments we discussed have been running through my mind.

One of the overarching themes in our conversation was the constant tug of war in our lives, which many in the rare disease community can relate to. We often feel pulled toward “playing it safe” until a cure is found, and sometimes we push toward “living on the edge” to take maximum advantage of the moments we’re given. My hope for a cure is continuous, but I’m living in such a manner that the outcome of my disease doesn’t matter.

Cure or no cure, life is still good, and I won’t let the lack of a cure be an excuse for living on the sidelines.

Finding middle ground

The challenging part is finding a balance between the two mindsets. I don’t want to be reckless and ignore the needs my disability presents, such as getting more rest or taking extra time to board a plane. But I also don’t want to isolate myself to the extreme, either.

As my disease progression continues to evolve, I’ve had to consider many “what-if” scenarios. I’ve become increasingly dependent on my rollator when I’m out and about, and I’m taking fewer steps without grabbing on to something. Recent trips I’ve taken that didn’t have an accessible shower have caused my heart to drop and my blood pressure to skyrocket in a matter of nanoseconds during close calls with falling.

Although I don’t anticipate needing to use a wheelchair full time in the near future, my home situation and current work duties aren’t conducive to how I’m living. As a result, I struggle to find the balance I mentioned. Do I start making changes now or merely explore my options? It’s a challenging decision.

What have you done to prepare for changes brought on by your disease? What might you recommend I consider as I look to the future? Please share your wisdom in the comments below.

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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