What to do when words can’t calm the Friedreich’s ataxia storm

I think just about everyone has been told at some point in their lives to be grateful for what they have, to not wish the day away, and that people always want what they don’t have. On the other hand, we are also told that we were meant for more, and that we should reach for the stars and never give up. In other words, there don’t seem to be universal words of wisdom that apply perfectly to everyone in every situation, and we can run ourselves ragged trying to live by all of these mantras.

I recently found myself in a situation where I was talking myself up and down with these sayings. Last week was hard for me. My allergies are going berserk this spring, which is physically draining. And I had three minor falls in two days, which put me in a funk.

I was driving through my neighborhood and saw a lady about the same age as me out jogging. Before Friedreich’s ataxia (FA) took away my balance, I used to jog daily. I loved it. But I haven’t been able to jog for about nine years. When I saw the woman jogging, it felt like a gut punch.

I was filled with envy that turned into anger. Why did she get to go for a jog when I was stuck in this disabled body that just an hour earlier had fallen and bruised a knuckle while simply getting out of my car? I was angry about all that FA had taken from me and frustrated about the complications it added to my life. Life just seemed incredibly unfair.

Recommended Reading

February 28, 2023 News by Lindsey Shapiro, PhD

FDA approves omaveloxolone, now Skyclarys, as first FA treatment

It’s OK not to be OK

After we finished putting the kids to bed that night, I was so emotionally and physically drained that I cried out, “I just want to get into bed and have today be over with!” I immediately felt guilty for saying that, because I was thinking about how I am not supposed to wish days away. Then I reminded myself that it’s OK not to be OK, and that tomorrow is a new day.

I was caught in an emotionally overwhelming cycle of trying to find the right words of wisdom that would make sense of my feelings and also validate them. But in the heat of the moment, that was impossible because my feelings were all over the map.

I felt so unsettled. So I took some deep breaths and controlled what I could. I took a shower, brushed my teeth, and got into bed early.

I texted the friends I always turn to in good times and bad. I didn’t go into laborious details about the who, what, where, when, and why, I simply said it’s been a hard week and I could use some prayers.

The next morning wasn’t miraculously different — I still had FA. My knuckles were still stiff. I was still tired. But I felt at peace about the day ahead of me. Being me seemed less overwhelming.

I am a firm believer in the power of words, but that day, it wasn’t words that made things better. I didn’t need a tried-and-true cliché to help me navigate my feelings at that moment. I needed to take a break from my feelings and just be. So I just allowed myself a moment to be in this emotional storm and wait for the skies to clear.

Words can’t defeat FA. Mastering my feelings won’t defeat FA. FA is too formidable, and it is unfair to expect the words of my friends and family to defeat it. But all of those efforts can help me handle life with FA.

They say you learn something new every day, and this is what I learned: There aren’t always magic words to solve your problems. Sometimes you just have to ride out the storm knowing that there is still hope for tomorrow, even if you can’t grasp it today.

Hopefully, I will remember this valuable life lesson next time my feelings overwhelm me. And hopefully, sharing it will help other people facing daily challenges.

“And God will generously provide all you need. Then you will always have everything you need and plenty left over to share with others.” — 2 Corinthians 9:8 

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.