Sometimes I feel powerless when dealing with Friedreich’s ataxia

Walking my service dog, Wendy, in the winter poses quite a challenge. When I take her out, she’s clipped to my wheelchair, which I use because of my Friedreich’s ataxia (FA). Then she jogs alongside me. Like most dogs, Wendy is thrilled when she knows she’s going out. Wiggling her backside enthusiastically, she sidles up next to me so I can attach her leash.

It’s enjoyable for both of us. I love being outside exploring my neighborhood, and there are so many scents for Wendy to smell.

A New England winter is taxing for a wheelchair user to navigate outdoors. I can’t always provide Wendy with the walks we both relish. I have no control over the ice and snow or whether my neighbors have cleared the sidewalk.

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It can feel like I’m powerless to provide Wendy with her winter exercise, but I’m not. I may be powerless over our preferred walks around the neighborhood, but not over her exercise. I can load us into my van and take her to a local park (which isn’t her favorite because she has to wear her vest, which signals that she’s working and can’t keep her nose to the ground). I can throw her a ball down the basement stairs, but she doesn’t enjoy doing that for long. After a few rounds of fetch, she’s happy to stop. So I try to keep it fun for her by throwing the ball a few times throughout the day.

I can ensure she gets exercise; I am not powerless. Perhaps a better way to put it is that while I’m powerless over some strategies, I can creatively find workarounds.

That’s just one smallish example of how life with FA can make me feel powerless. Of course, the major issue is that FA is degenerative. I keep getting worse, and there’s no stopping it, at least not currently.

Feelings of powerlessness when living with a chronic disease

I’m not alone in feeling powerless in my daily life with FA. Living with other chronic or rare diseases can lead to feelings of helplessness. It’s important to recognize that these emotions are entirely normal.

When faced with a condition that significantly affects daily life, it’s natural to feel overwhelmed by the constant challenges and uncertainties. The unpredictability of symptoms, the necessity for ongoing medical treatments, and the limitations imposed by FA can all contribute to a sense of losing control over life.

Moreover, the rarity of FA can exacerbate my feelings of powerlessness. When a condition isn’t well understood or widely recognized, it can lead to isolation and a feeling of lack of support. Advocating for a cure through the Friedreich’s Ataxia Research Alliance and becoming friends with others who have FA have mitigated my feelings of powerlessness. I still have them, but it’s much easier to focus on what I can control now that I intentionally do these things.

Connecting with others who share similar experiences can provide a sense of community and understanding. Additionally, focusing on small, manageable goals and celebrating personal achievements — “Little Victories,” as my friend Matt Lafleur calls them — no matter how minor they may seem, can help me regain a sense of control and empowerment. That’s what I do when I remember I can still give Wendy the exercise she needs, even during a harsh New England winter. Feeling powerless at times is a natural response to a challenging situation, but it doesn’t define your strength or resilience.

Almost every day I look at a loved one’s poster of the Serenity Prayer, which asks for the wisdom to know the difference between things we can control and those we can’t. I can’t control the fact that I have FA, but I can control how I live with FA and the quality of my life by eating a healthy diet, exercising, having a purpose, advocating for treatments and cures for FA, cultivating friendships, having fun, knowing what I can’t control, and more.

Today, I find a balance between hope and my current reality by planting seeds that will, hopefully, become this summer’s flowers. I’m gratefully planning for the time when the snow and ice are behind me. I can prepare for my love of spring and summer gardening. I can assert my power over my ability to embrace new seasons. I am not powerless.

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.