I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
Actor and activist Michael J. Fox, 62, has been publicly battling Parkinson’s disease since 1998. Although Parkinson’s and my diagnosis of Friedreich’s ataxia (FA) are very different, they are both neurological diseases that affect your ability to function “normally,” cause pain and heartache, and are currently incurable. Therefore, his journey is important to me.
I recently came across a “CBS Sunday Morning” interview with Fox from earlier this year. He said, “I recognize how hard this is for people and I recognize how hard it is for me, but I have a certain set of skills that allow me to deal with this stuff. And then I realized, with gratitude, optimism is sustainable.
You find something to be grateful for, then you find something to look forward to, and you carry on.”
How impactful. He succinctly touched on all the big ideas that I struggle with, namely gratitude, optimism, and carrying on, and how they all work together. What a compelling perspective from someone who is facing an overwhelmingly relentless daily battle.
Carrying on
I used to consider myself an optimist, but in those dark months following my diagnosis in 2013, I became the darkest pessimist. I am now somewhere in the middle and like to think of myself as a realist. I have hope for positive changes, but plan to proceed with the way things are. I have fears about the future progression of my symptoms, but again, I have plans for those possibilities.
But I’m only human. I desperately want to be a carefree optimist, confident that things will work out well. My realistic approach to life with FA is so easily sucked into a pessimistic mindset as I find myself internally screaming, “Hope and optimism are not sustainable! I can’t do this!”
I realize that those moments happen when my life, my identity, my everything, becomes eclipsed and consumed by FA. I get tunnel vision and all I can see is how FA is affecting me. All I can see is how I’m physically unable to be the wife, mother, friend, neighbor, daughter, and sister I want to be.
When I get that FA tunnel vision, it’s hard to snap out of it and notice the things I am grateful for. I try to muscle my way through life, pretending like I’m perfectly fine and FA doesn’t get me down. However, this isn’t sustainable. Pessimism is not sustainable in my life with FA.
Next time that happens, I’ll try to remember what Fox said. I, too, have skills that allow me to deal with FA. I have humor and the desire to enjoy life. I have the emotional maturity and the responsibility to try. I have an incredible village made up of the most thoughtful, generous, helpful, empathetic, and kind friends and family.
I will pause to reflect on the things I am grateful for, knowing that I have so many reasons to carry on. Yes, life with FA is hard. FA demands acknowledgment and adaptations. Making those allocations isn’t easy, but neither is it admitting weakness or defeat. It’s just practical and part of my life. But if I can remember all of the things and people that I am grateful for, making those adjustments might be a little less daunting. That gratitude can refine my vision, refuel my optimism, and encourage my desire to carry on.
I have so much to look forward to, even with the ways FA might complicate my execution of the future, and that makes carrying on worth it. I am both optimistic and realistic about the future, and I plan on celebrating that during the 2023 holiday season.
In 2024, I resolve to be more intentional with my mindset and verbally express gratitude.
“Thanks be to God for his gift that is too wonderful to describe.” — 2 Corinthians 9:15
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