Living With FA Reminds Me to Be Thankful for My Job

As the decades pass, a columnist becomes more grateful for his reliable workplace

Sean Baumstark avatar

by Sean Baumstark |

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With Thanksgiving just days away, I’ve been participating in many exercises in which I’ve had to mention things I’m thankful for. This is a familiar routine this time of year. As I’ve aged and Friedreich’s ataxia (FA) has progressed, however, I’ve noticed that the list of things I’m grateful for has changed.

If I could find such a list from my 20s, it would include my car, computer, wardrobe, and significant milestones, such as earning my degree. In my 30s, that list likely still included my car and some accomplishments, but it probably focused more on family and friendships.

As I’ve been contemplating this year’s list of things I’m thankful for, one is jumping out at me more than ever: my job.

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On the one hand, it’s a standard item on many people’s lists. Jobs often provide a steady income, healthcare access, retirement benefits, and skills to develop or improve. But on the other hand, a job can easily be taken for granted. Whether it’s viewed as a steppingstone or just one of many options for employment, some people may offer little of themselves to their work, effectively missing the opportunity to add value to their job.

Although I’ve shared gratitude for my employer in the past, it’s resonating on a different level right now.

It isn’t just my particular “job” at the front of my mind, but also my ability to work. When it comes to disabilities, being able to perform work and finding work are both equally challenging. In my 20s, my FA was not as noticeable nor as hindering as it is today. When I changed career paths when I was 28, I wasn’t worried about finding work because there wasn’t much holding me back. Now in my 40s, however, I don’t doubt I’d have more difficulty finding reliable and sustainable work.

Over the last few years, I’ve had some injuries that put my ability to work at risk, the most significant being a hip fracture in 2019. As I recovered and started walking regularly, I fell several times and suffered minor fractures. Every now and then, I’ll still have a close call where I lose balance or trip and come close to falling. Every time this happens, I think about how bad it could have been if I’d fallen.

Thankfully, I work for a company that cares deeply for its associates, and I’m confident that such injuries, or the natural progression of FA, won’t cost me my employment. Of course, my specific job duties may need to change, but barring a wrong decision on my part, I feel secure in the company I’m with.

With the uncertainties that flood the news on top of my living with a progressive condition, I don’t want to take anything for granted.

This year, I’m especially thankful for the ability to work and for the opportunity to be employed with Nugget Market, one of Fortune‘s 100 Best Companies to Work For.

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.


William Henry andrew avatar

William Henry andrew

Hey Sean, i was finally diagnosed with Cerebellar Ataxia in January this year; SCA 14 via genetic testing shortly thereafter; twenty five years of seemingly unrelated signs & symptoms culminating in several episodes of syncope with collapse; and, learning my late dad had undefined SCA. Coincidentally, I was an active club racing cyclist until 2011, and saw the Ataxian just after my diagnosis. Anyways, let me get to the point, I am an Rn and my disease started to worsen after I got my employee mandated Covid shot, and whilst I am still on my feet & able to ride, there is a noticeable change in many things I do, not least, my ability to multitask at my job and them not agreeing to all my reasonable accommodation requests. Thus, at 59y/o I am looking to medically retire but interested in finding something remotely maybe utilizing my nursing knowledge. Any advice or pointers would be appreciated.



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