Managing reality, expectations, and hope with Friedreich’s ataxia

Dear friends have asked me how I’m doing a few times over the past few weeks, specifically concerning my Friedreich’s ataxia (FA). Through their questions, I’ve realized that I’ve been so caught up in the busyness of parenting young children in springtime that my life has become more family-focused. Because of this, I haven’t given my FA much thought after I get out of bed to start my day.

While being occupied with activities that bring me joy and fulfillment is generally a good thing, I also have to be intentional about processing my thoughts and feelings about FA to avoid them catching up to me in unexpected ways. I know this dynamic from experience.

When I responded to the kind inquiries of my friends, I had a few overwhelming realizations.

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First, life with FA is hard. Every single morning I go through an emotional letdown followed by a motivating realization. When I wake up, my FA symptoms are either the same or just a tiny bit worse than yesterday. Most days, my progression is imperceptible, but it’s still there. Then, I have a sobering moment of pessimism: I’ll possibly be even worse tomorrow. These two realizations happen so quickly each morning, but they never cease to make me pause to catch my breath and start my day intentionally.

If I’m more symptomatic today, what will or won’t I be able to accomplish? And if I’ll be more symptomatic tomorrow, what do I need to accomplish today? What can I do to make tomorrow better? What an emotional start to my day.

My second realization was about how I manage my expectations. After I assess the body I woke up in today, I pray for a miracle for tomorrow, then just get going. All I, or anyone for that matter, can do is take things day by day. I must make the best of my slow, uncomfortable, effortful, tired, and unresponsive body today, no matter what that looks like.

Sometimes my best just manages to check off my to-do list, while sometimes my best has to cancel plans so my body can rest. And sometimes my best exceeds expectations. All I can do is my best, hoping that tomorrow is better.

Last but not least, I realized that I can’t give up hope. Most days, I just pray for the small things: having enough energy to work out, get my walker in and out of my car, shower without incident, and safely complete my household chores for the day, all while praying that my feet won’t cramp at 2 a.m. again. These daily hopes have become small, specific, self-centered, and manageable.

Because of this daily routine, I sometimes forget to pray for the big things, too, like a cure for FA.

I’ve gotten so used to simply making it through that I sometimes forget there’s hope that all of my tomorrows won’t be like this. There’s hope for the next treatment and even a cure. Yes, surviving and enjoying the day are attainable goals that I can strive toward every morning. But so is a medical breakthrough.

I never truly know what body I’ll wake up with tomorrow, just as I never know what news I’ll wake up to tomorrow. My symptoms could be better, worse, or the same. A new therapy might be announced. Who knows? All I know is that it’s my job to keep doing my best every day, and that’s my plan: hoping for the best while managing what is.

“I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit.” — Romans 15:13 (NLT)

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.