Finding Comfort in a New Normal

“You need to go easier on yourself,” my friend told me. I was busy berating myself for having a bad week when my symptoms of Friedreich’s ataxia (FA) seemed to spike all at once.

I did stop blaming myself, as my friend suggested. Instead, I thought about my week more logically, less pessimistically: Noticing a week when symptoms seem more severe isn’t surprising at all, since by definition FA will get more debilitating over time until a treatment or a cure is developed — the unfortunate reality of a progressive disorder. Although that week was disappointing and frustrating, it wasn’t unexpected.

I wondered if this new lack of function was my new normal.

Finding a “new normal” means adapting to living in a different way than usual. I’ve had to face new normals many times in my young adult life. Instead of getting by on my own two feet in college, I depended on a power wheelchair to maneuver the campus. Midway through my sophomore year, I started using a wheelchair to get around my apartment, too, instead of leaving one as soon as I came inside. As a college senior, I realized I could no longer easily hold myself upright in the shower, so I got a shower chair for my bathtub. During grad school, I sadly accepted that it was easier to sit down every time I used the bathroom. Then after grad school, I could no longer transfer to bed without holding on to a support, so I installed a SuperPole at my bedside. 

Each time I adapt to a new normal, a sense of shame washes over me. Maybe I just stopped trying, and I would still be able to do those activities if I hadn’t turned to assistance so quickly.

Although I will be the first to tell anyone facing an inherited health complication that “It’s not your fault,” and “Feeling ashamed over something you can’t control is stupid,” part of me is still embarrassed by my clumsy way of maneuvering life. It’s funny that what we tell others is sometimes so difficult to believe ourselves.

I followed my friend’s advice after I left that conversation. Berating myself is futile.

The next week, I thought my physical symptoms felt much the same. I didn’t notice a further decrease in my functioning, but I didn’t really notice an improvement, either.

That is, I didn’t until that week’s physical therapy session. No shiny miracle, I just felt a little more balanced and coordinated. Even though it was very subtle, it felt good.

“You’ve improved so much since you started coming here [two years ago]!” my physical therapist said. “I love seeing your new normal.”

I’d always feared facing a new normal. It seemed like it was only a sign of my body’s further degeneration. But this time my PT used the words “new normal,” and it didn’t fill me with dread.

I’m not naive. I know that FA is the train I’m on — slowly falling apart, moving toward an unknown destination. There’s no stopping it without a treatment or a cure. Currently, a week of good symptoms, like a week of severe symptoms, is nothing more than a bleep on the heart rate monitor. 

FA’s symptoms will progress. I won’t make it out alive.

And yet, a good week is a little victory. That’s the secret I’m still learning over and over: FA symptoms fluctuate week to week, but if we wallow in misery, we may miss out on tiny signs of hope that are out there.

May hope be our new normal.

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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.