How I Manage Mental Health With FA’s Progressive Nature in Mind

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by Sean Baumstark |

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I met a friend for dinner recently, and we talked about the changes I’ve observed in my capabilities in the last several months. Not only did we have a pleasant conversation, but in celebration of Cinco de Mayo, we also enjoyed a margarita with dinner. One question he asked me was, “How are you dealing with the changes you’re noticing?”

Friedreich’s ataxia (FA) is an unforgiving neuromuscular disease that reminds me that no matter how much I exercise or how much rest I get, it’s not only still there; it’s getting worse. Although I wish I could blame the margarita for my instability, FA’s progressive and persistent nature is the sole culprit.

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I’ve heard the question before, but this came from a dear friend who has known me for over 20 years. In other words, neither of us is OK with superficial responses. So this time, the question caused me to pause and sit with my thoughts for a moment.

The easy answer: I don’t deal with it.

The accurate answer: I don’t deal with it, specifically.

I immediately thought about something formal, such as counseling or meeting with a clergy member. I’ve engaged with both before, but usually for a specified season or to work through a specific topic. I’ve always benefited from the process and find immense value in having such a systematic and routine outlet. However, I haven’t had such a routine in several years.

The more I contemplated the question, the more I realized that “dealing with it” doesn’t have to mean professional counseling.

Like most people, I deal with many things every day. Between juggling work, family, friendships, a podcast, and a nonprofit, there is no shortage of things that are important to me, to which I give a lot of my energy. However, I’ve learned that staying busy isn’t the best way to deal with things. Instead, I’ve found it a common way to avoid dealing with areas that need attention.

In the conversation with my dear friend, I realized that I deal with my disease’s progressive nature. I may not sit down for a 50-minute session with a licensed therapist, but I am constantly sharing the ups and downs of life with people around me.

I write this column regularly, co-host a weekly podcast that constantly wrestles with areas of difficulty and frustration, and share an introductory glimpse of FA and how it affects me every week with new hires at work. In addition, my friend and podcast co-host, Kyle Bryant, and I exchange war stories involving FA almost daily.

Perhaps talking about FA and sharing my journey regularly, paired with an optimistic outlook, are the recipe that helps me avoid a downward mental and emotional spiral. I know there is no one-size-fits-all therapy or professional guidance, and my thought process may be flawed. But considering the devastating prognosis and annoying symptoms of FA, I can’t help but think that I am dealing with my progression without allowing it to define who I am or what I can do.

Being vulnerable and open to talking about the hard things have kept me from allowing my challenges and difficulties to consume me. We all have bad days; focusing on the good in life and living with a sense of urgency help keep me in an emotionally stable place, despite the ever-changing reality of FA.

I think of therapy and mental health as anything resulting in forward motion. In honor of Mental Health Awareness Month this May, I want to encourage readers to consider intentional therapy. Perhaps that comes in the form of professional counseling if such resources are available to you. Maybe it’s simply connecting with a trusted friend regularly.

I believe I have experienced significant benefits from journaling, cleaning, playing the piano, and exploring meditation practices and breathing techniques. Although therapy to address mental health exists in many forms, consistently engaging in those that work for me is critical.

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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