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.
I recently heard an interview with a local high school principal about the message he is sharing with his staff and students during these unprecedentedly hard times of COVID-19. In response to the pandemic, he said we can either “rise and whine or rise and shine.”
How profound and relevant is that statement to all of the challenges we face in life?
As a Friedreich’s ataxia (FA) patient, I have plenty to whine about, in my humble opinion. I can whine about being dependent on a mobility aid because of my progressively deteriorating balance and coordination. I can whine about my chronic fatigue, painful neuropathy, slow and slurred speech, developing scoliosis, inability to do the simplest tasks, and so on. I don’t think anyone would blame me if every morning I chose to “rise and whine” about any of those things.
In fact, I have spent a lot of time whining. I used to wake up exhausted and sore, and then roll over with great effort only to see my walker and an investigational treatment from a clinical trial sitting by my bed. This immediately made me feel burdened by hardship and frustration with life as an FA patient. I would become unendingly glum while telling myself the mood was justifiable.
“Look at everything you’re dealing with!” I’d tell myself. “It’s amazing you even got out of bed.”
My whiny mood affected the entire house and everyone else I came into contact with. Frankly, even if it was justifiable, all of that whining got me nowhere. And it certainly didn’t make me feel any better. My FA symptoms didn’t improve, and I felt more drained and glum by the end of the day. By getting stuck in a “rise and whine” pattern, I was hurting myself and those around me.
After a lot of self-realization and personal work, and through sheer determination, I eventually began to “rise and shine” instead. I flipped my mindset and took ownership of my thoughts and feelings.
When I would roll over and see my walker, I would tell myself, “I am lucky to have a dependable mobility aid that will help me accomplish everything I plan to accomplish today.” When I would take my investigational treatment, I would say, “This is what all of my hard work with fundraising helps to pay for. We are getting closer to approved treatments and, eventually, a cure.”
That simple exercise of flipping my mindset helped me switch from “rise and whine” to “rise and shine.” As a result, I feel lighter, stronger, more energized, and more capable. I make better choices about my diet. I exercise. I laugh more. I accomplish more. Simply put, when I feel better, I live better.
With the progressive and degenerative nature of my symptoms, I can’t necessarily make my body feel better, but I can make my mind feel better. When I feel good inside, I shine more on the outside.
I strive to shine with contentment, hope, happiness, wisdom, and grit. When I make that my goal instead of whining for sympathy, pity, and lower expectations, I live a better life. I get to “rise and shine.”
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