How Reflecting on My Life Increases Urgency For Me

Life is more fragile than I sometimes realize. This is true for everyone, rare disease or not. Most days, I feel invincible and think about the next 40 years of my life. On other days, I recognize that I may not lap the four-decade mark again. I know the prognosis for Friedreich’s ataxia (FA) leaves me against the odds, but this isn’t always on the front of my mind.

I often talk and write about being intentional with my time and energy and pursuing the things and the life that are important to me. The sense of urgency I feel rarely subsides, which I’m thankful for. Although my life is likely to be shorter than the average person’s, I avoid spending too much mental energy on that realization out of fear that it will consume more of my attention than necessary. However, balancing a “right now” mindset with preparing for the future is a healthy exercise every now and then.

Whether it’s a movie, a song, or the loss of a loved one or acquaintance, many things may push my mind into a moment of reflection and increased urgency. I often ask myself, “What else do I want to accomplish?” and “What else do I want to contribute?” These questions help me keep important things in focus and avoid too much procrastination.

(The closing tagline on the podcast I co-host holds me accountable to “living with urgency.”)

I recognize that I am privileged and beyond blessed to have turned 40 recently and still be ambulatory. The later onset of FA for me has resulted in milder symptoms and a slower rate of progression than most FA patients experience. Despite my current health and status, over the last year or so I’ve also started asking myself, “What do I need to take care of?” or “How should I prepare for the end of life?”

Although it’s a heavy question, I think about the saying we’ve probably all heard some iteration of — “death and taxes are the only certainties in life” — and I chuckle at how true this is. If death is the ultimate wound, then taxes must be the strongest salt.

Since life is not infinite, I’m left to wonder how I can maximize the years I do have with the abilities that remain. Being a part of the rare disease community and advocating for the things I believe in have contributed to my purpose and fueled my sense of urgency.

A rare disease, disability, or any other hardship shouldn’t be an excuse to wander quietly or aimlessly, but rather a reason to live purposefully and intentionally. I don’t believe it matters what we do (schooling, career, parenting, hobbies, etc.) but rather how we do it.

Living a life fully engaged requires constant steps, big or small, toward the things that matter to you.

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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.