For me, learning from experience isn’t as easy as it sounds

Living with Friedreich's ataxia leads to constant reassessment of my needs

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by Sean Baumstark |

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I’ve heard it a thousand times: “Experience is the greatest teacher.” And although there’s a lot of truth to that, I’m not sure it covers every situation. I, for instance, often repeat frustrating or disappointing experiences and wonder how I let myself continue the behavior that led me there. In such cases, what did experience teach me? This definition of insanity, often attributed to Albert Einstein, comes to mind: “doing the same thing over and over and expecting different results.”

Living with Friedreich’s ataxia (FA) or any progressive disease requires a lot of adjustments over time. When I was diagnosed with FA, for example, I had no problem brushing my teeth with a traditional, manual toothbrush. Nowadays, I dread brushing when I forget to charge my power toothbrush because of how much pain I cause my gums. As my muscle control weakens, my tendency to jam my gums increases.

Other adjustments have been more challenging to identify and make. Years ago, I’d go to the gym five days a week without question and say yes to extracurricular activities with friends anytime an invitation came my way. With age and lower energy — an unfortunate symptom of FA — that’s changed. But I still needed a long time before I’d permit myself to skip the gym now and then, or miss a social outing so that I could go to bed early and get the rest my body needs.

Living with FA means regularly reassessing what works and what doesn’t. And when I think I’ve got everything figured out, I often don’t and find myself exhausted and wondering how I ended up here again. It’s been easy to look back and identify what I should’ve done differently, but a lot harder to take the necessary actions to avoid getting the same results.

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How choices shaped my first decade with FA

Lessons in holiday travel

My latest lesson revolves around the way I approach traveling for the holidays.

As someone who’s been earning an income since I was 12 (my first job was as a paperboy), I usually feel the need to maximize my earning potential by contributing as much time to work as possible. Of course, all the money in the world only means a little if you haven’t invested time and energy with loved ones. So I’ve had a long game of tug of war between making enough money to enjoy Christmas and spending quality time with family.

In recent years, I’d “volunteer” to work full days leading up to Thanksgiving and Christmas and then take a late flight to spend the holiday with family. This practice allowed me to continue making money, but still be with family for those significant activities and meals. The result, however, was that I was burning the candle at both ends, and my exhaustion kept me from enjoying my family — and sometimes kept them from enjoying me, too.

When I was younger, before FA had a noticeable effect on my body, I prioritized my income. But with FA getting worse and my mom having health concerns, time spent with my loved ones has been my priority this year.

For Thanksgiving, therefore, I chose to miss time at work to spend quality time with family. Instead of working all day and then dealing with airports and Uber late at night, I chose a work-free travel day to begin my trip and a full day to settle back in at home before returning to work.

By following this plan, I was more physically and mentally present, more engaged with my family, and more rested for my family and my return to work. Sure, this choice caused a loss in income, but the benefits of being with loved ones far outweighed the costs.

Since this approach worked well for Thanksgiving, I’m looking forward to a similar plan for Christmas — or rather, I’m looking forward to my new normal when it comes to juggling holiday travel and work.

John C. Maxwell is an American author and keynote speaker who focuses on leadership and personal development. “Experience teaches nothing,” he said, “but evaluated experience teaches everything.” When I look back and examine the domino effect that a nonstop schedule has on me, my experience suggests I should try something different to avoid the insanity of self-inflicted exhaustion.

Living with FA has certainly exposed me to many experiences. But experiences alone won’t help me change or grow; it’s what I learn from those experiences and subsequently apply that’ll help me avoid insanity.

As you approach your holiday plans and consider New Year’s resolutions, I encourage you to take stock of what’s changing for you and adjust accordingly. Give yourself permission to pay attention to and prioritize your well-being.

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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