I’m Getting Wiser as I Grow Older With Friedreich’s Ataxia

Columnist Sean Baumstark is learning to better control his emotions and temper his responses

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by Sean Baumstark |

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Advocacy can be a tricky, give-and-take process. So often those of us living with disabilities are faced with mixed emotions as we go about our daily activities. On the one hand, we’re told to be grateful for our remaining abilities and celebrated for making the most of our circumstances. On the other hand, our desire to be independent and experience “normal” activities receives pushback from those who may be inconvenienced. This constant tug of war causes me to wonder when I should voice my perspective and when I should take things in stride.

As I age and my Friedreich’s ataxia (FA) progresses, I feel like I’m reining in my tendency to respond to a situation from a place of heated emotion and am instead taking deep breaths and reminding myself that arguments rarely resolve anything.

This seems to be a hot topic right now on the podcast I co-host, “Two Disabled Dudes.” Not long ago, my friend and co-host, Kyle Bryant, and I were talking about some all-too-common situations we find ourselves in due to disability. From limited disabled parking to inaccessible bathrooms, from needing an elevator to dealing with the emotional roller coaster of air travel, the disabled community has no shortage of challenges that many nondisabled people may never relate to.

Like it or not, my advocacy shows up in these moments. How I react to other people showcases my attitude and character. When I respond from a place of frustration and anger, I may be pleased with the way I stood up for myself, but the message gets obscured by my emotional state. When such situations escalate, before I know it, I find myself arguing simply for the sake of arguing.

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How I’m controlling my emotions

Lately, I’ve been aware of my responses and emotional state more than ever before. Thankfully, my disease progression, although noticeable, is still moving slowly. So if my situation is relatively the same, I can only attribute my newfound tendency to think before I react to my age. Older always means wiser, right?

I can only wish that wisdom automatically came with age. Wisdom generally comes from experience, and unfortunately for those of us who live with a disability, many of our experiences are unpleasant.

I recently had a conversation that started to get heated. For perhaps the first time, I bit my tongue and let the discussion follow a course determined by the other person. I felt myself becoming emotionally triggered, a situation that typically would elicit an aggressive and direct response from me. But instead, I forced myself to reply in short, softly spoken words to avoid escalating the situation, which certainly wasn’t easy for me.

I could hear Kyle’s voice in my mind from a recent episode of our podcast, which helped to keep my emotions grounded. Kyle and I had discussed the everyday situations of accessible parking spots being blocked, parking hash areas being used inappropriately, and our tendency to respond with sharp words and an unfriendly tone. Of course, Kyle is much better at this than I am, but he also reminded me that it’s easier said than done. It takes practice.

I recently wrote about grace being a constant struggle, yet I’m grateful to have encountered it. I think it’s making me wiser.

How do you find grace in stressful moments? Please share 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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