The Way I Manage My Symptoms Offers Insight Into Personal Growth

Sean Baumstark avatar

by Sean Baumstark |

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There’s nothing quite like the realization that you aren’t following your own advice or philosophies about personal growth as well as you could be. At least, that’s the case for me right now. Yet again, I’m feeling grateful for this platform and the ability to write on a regular basis. This habit and commitment is a layer of accountability that reminds me what’s important to me.

My friends, family, readers, and podcast listeners know that I’m intrigued by the methods and ideology of personal growth, and I’m motivated to pursue the best version of myself as possible. However, I must admit that it’s easy to get caught up in the human hamster wheel. It’s too easy to expend a lot of energy trying to maintain life instead of intentionally working to improve life.

I enjoy staying busy and having several things going on at once. Lately, though, I’ve been wondering if my energy and time are being spent in productive and prudent ways. I haven’t come to any conclusions yet; I’m still in the self-observation phase of this line of questioning.

(I welcome your input, feedback, or suggestions as I navigate this part of my journey. Feel free to comment below after reading this.)

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A Meaningful Life Requires Intentional Time

I was catching up over the phone with one of my oldest friends recently, and it was this conversation that allowed me to recognize the “maintenance mode” I seem to have been in for a short time. My friend and I talked about the difficulties of juggling five things as opposed to three things. The idiom “jack of all trades, master of none” quickly became the central theme of our conversation.

Naturally, I began wondering if I have inadvertently stretched myself too thin.

And today, I chuckled at the irony of how I manage my daily activities with Friedreich’s ataxia. Given the balance and coordination issues, and how carrying things can make movement harder, I’ve made it a habit to do one thing at a time. I’ve given myself permission to make multiple trips to and from the car to unload groceries or luggage. I’ve forced myself to stop, step out of the way, and draft a text or put my wallet away instead of trying to walk and do, well, anything at the same time.

In some areas, I recognize the importance of focusing on one thing at a time. In other areas, that recognition hasn’t solidified, apparently.

The conversation with my friend was important for me. It’s conversations like this that push me into a valuable practice of observation and reflection. Whether I’m on the right track, juggling the right things, or even focusing on the right things isn’t always the right question. Instead, taking a moment to reflect and ask myself if I’m proud of where I am, and where I’m going, was the important question at that moment.

The built-in accountability with this column or podcasting has strengthened some of my personal disciplines. Over the phone, my friend offered some accountability, too, without even realizing it. After sharing some thoughts and feelings I’ve wrestled with lately, my friend began asking, “Why?” His question was like what one might expect from a child. He repeated the questions “Why do you feel that way?” and “Why do you think that?” This pushed me to go beyond the surface with my answers and wrestle with the thoughts percolating inside.

I don’t know what the best outcomes are just yet, but I’m grateful that different forms of accountability are helping me avoid excuses and pushing me to figure things out as I go.


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.


Karina Jeronimides avatar

Karina Jeronimides

Hi Sean,

I agree with you, that we cannot only work on maintenance mode, and that in spite of the maintenance mode being enough of a challenge, we have to always be looking forward. And this is not true of simply our FA.

I teach full time (with an accommodation as of 2019), and it is very challenging to do it with FA. So I use a power-chair, use a speaker to amplify my voice, and wear a mask, to minimize covid exposure, and create power-points as I cannot write on the board. But that's not enough to teach effectively. I have to consider my students' level, and their short attention span, and how I need to cover 5 topics from their textbook in 75minutes... And once all that somehow is figured out, I have to invent another goal for myself so that I can say in my reappointment letter, that I've worked on service, and that I've attended lectures to keep current in my field. If I only work on maintenance, my students will learn, but I will get fired from my job. I know you meant maintenance in FA, but I think your idea applies to other fields as well. When one has FA, one constantly has to reinvent the wheel and then some.

I hope I understood what you meant, and that this is at all helpful. My friend told me last night, that I should be content with just the maintenance of my job. She doesn't have FA though, nor does she work outside the home, so it was good for me to hear you backing me.

All the best,
Karina Jeronimides

Sean Baumstark avatar

Sean Baumstark

Hi Karina! Yes, exactly - you understood what I was relaying and your thoughts are helpful - and encouraging. I'm glad you took the time to leave a comment. Thank you for reading, too. It sounds like your job can be exhausting, but I'm encouraged by your commitment to improve yourself and give your students a strong experience in your classroom. You're likely having a bigger impact on them then you will ever know.


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