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.
When you live under the banner of a degenerative disease such as Friedreich’s ataxia (FA), you become well acquainted with fear. You fear what your body has in store for you tomorrow, next month, next year, and the years after that. You fear falling or accidentally doing something that speeds up your symptom progression. You fear that you are not doing enough to fight for your future. You fear that you are fueled by fear rather than positive feelings like hope, joy, determination, or happiness. Or at least that’s true for me.
There are many ways to handle being afraid. Most of us have heard of the fight-or-flight response, where you either face your fears head-on or flee in self-preservation. After nearly nine years of living with FA, I’ve noticed that I take both approaches, sometimes on the same day, and sometimes in response to the same problem.
Sometimes, I confidently face my FA-related fears as soon as I notice them. Other times, I put it off until I
Living under the relentless threat of FA has, in some ways, affected my ability to perceive the reality of what I’m facing. I often feel like I’m being overly dramatic, cautious, and sensitive, as though FA is waiting for any opportunity to pop up and ruin everything. Other times, I get so used to living with fear as a constant companion that I fail to notice when I’m afraid of something unrelated to FA.
I’m the first to admit that I have a lot of work to do in terms of processing and facing my fears. And I know that new ones are always lingering on the horizon, each requiring a unique approach. There is no one-size-fits-all solution for eradicating fear from your life. All you can do is try to find the best path forward and keep adapting.
There are many sayings, philosophies, and parables about handling fear. Some will motivate you, while others may fill you with regret. Because I think it’s virtually impossible to go through life with FA fearlessly, I’m frequently comforted by this Morgan Harper Nichols quote: “Doing it afraid is just as brave.”
Regardless of which side of the fight-or-flight spectrum I fall on, I’m certain that I’ll continue to face both old and new FA-related fears. All I can do is keep trying to find ways to tackle them, cope with them, or move them aside, whether I feel brave or afraid.
I’ll continue to strive to be fearless, but in the meantime, I’ll be satisfied with acting fearless, because that is just as brave.
“She is clothed with strength and dignity, and she laughs without fear of the future.” — Proverbs 31:25 (New Living Translation)
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