Being content in the face of FA and other adversity
Highs and lows come with this disease, but that doesn't make us unique
I recently saw a short YouTube video extolling the importance of accepting that life is bittersweet. In this acceptance, we can become content.
If you’ve been reading my columns, you’ve heard me say that I’m happy. I’ve been careful to say that I’m happy overall, not happy every moment. This video, however, helped me realize that it’s more accurate to say that I’m content.
I’ve been living with a rare and degenerative disease, Friedreich’s ataxia (FA), for over 40 years. Throughout my life with FA, I’ve had many peaks and valleys. Many of those were directly related to FA, but many were not.
The inevitable ups and downs
I’ve had bad times with FA, such as a funeral for a young friend of mine. I’ve also had joyful and inspiring times with FA, such as when I celebrated the hard-won U.S. Food and Drug Administration approval of Skyclarys (omaveloxolone), our first-ever treatment for FA.
You’d rightly think that being happy at my friend’s funeral would’ve been irrational. Likewise, if I were still ecstatic six months after Skyclarys’ approval, my family would’ve urged me to see a counselor; that sense of joy and accomplishment we all felt at the time wasn’t sustainable.
Life with FA is full of highs and lows, but so is life without it. A couple of years ago, for instance, most of my family and I went to India to celebrate my nephew’s wedding. The recent loss of our mom didn’t eclipse the joy of that trip. We wished she’d been there, but we still had an amazing time. My nephew’s wedding and my mom’s death had nothing to do with my FA.
Sometimes when my butt is firmly planted on that FA pity pot and I fall for the millionth time, I remind myself that being free of the disease wouldn’t let me avoid lows. The thought helps me step back into the equilibrium of contentment. I’ve accepted that life is bittersweet for everyone.
In no way, however, am I saying FA is easy. It’s not. Those of us with the disease face additional adversity. It’s just that we’re not alone in that. Many of our fellow humans have a pile of adversities for myriad reasons.
The added adversity, to my mind, makes those of us with FA more resilient. Until there’s a cure, we’ll live with FA. And we’ll live well.
As we’re in the middle of the holiday season, I and many humans will acknowledge that this time has lows and highs, from the argument with your cousin to the sublime beauty of a 5-year-old’s face when she gets the gift she always wanted. FA has taken many abilities away from me, but it can never take away the friendships (and more) that the FA community has given me.
I wish you every bit of joy there is this season. Without those minor or devastating lows, you can’t experience the highs. Still, don’t hesitate to get help during the down spells. I have. I know I’ll experience peaks and valleys in these coming weeks, but the more I accept this bittersweet life, the more content I’ll be.
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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