I Choose How to Respond to Friedreich’s Ataxia Challenges

Kendall Harvey avatar

by Kendall Harvey |

Share this article:

Share article via email
friedreich’s ataxia | Friedreich's Ataxia News | Main graphic for

There is no single way to handle challenges in life. What works for me might not work for you. And what worked for you last time might not work for you this time.

I think the only consistency we can count on when confronted with challenges in life is inconsistency. And in my experience, inconsistency is best handled with adaptability and perspective — which are choices.

I recently came across a helpful quote by the inspirational artist and writer Morgan Harper Nichols:

“When there are no easy answers, may we choose to live with the questions. When there are no quick fixes, may we choose to mindfully practice finding solutions. When we don’t have the right words to say, may we choose to listen. Uncertainty does not always have to equal apathy. Despite all we do not know, may we choose to be present with love, humility, and compassion.”

Recommended Reading
DT-216 Phase 1 trial | Friedreich's Ataxia News | illustration of bottle with

Surveys Point Out Major Motivations and Barriers to Trial Participation

I love this reminder for many reasons. I feel incredibly empowered when I remember that I always have a choice. Yes, challenges will continue to come my way, especially where Friedreich’s ataxia (FA) is concerned. But I can choose to look at those challenges with a carefully curated perspective before I select the best way to adapt and move forward. And when I have reached the end of myself and can’t find a solution, I can choose to ask for help and advice.

I especially love Morgan’s reminders about uncertainty. For my FA-controlled body, the only certainty I have at this stage of my symptoms’ progression is that they will continue to disrupt my life. I don’t know when I will fall next or what injuries my falls might have in store for me. I don’t know if or when I might begin to experience new symptoms. I don’t know how much longer I will be ambulatory. All I know for certain is that I have the perspective and the adaptability to handle the challenges I may come across in my uncertain future.

So often in life we can’t control what happens to us, but we can control how we respond. Control over our responses is where our power lies. A good way to feel empowered and to make productive choices in response to challenges is to maintain an appropriate perspective.

For instance, when I fell in 2018 and obliterated my ankle, requiring intensive reconstructive surgery, I thought my life was over. I thought I would never heal, let alone walk again. I thought it would always hurt and there wouldn’t be a day that I wouldn’t think about it. But I recovered. I healed. I continued to walk and I moved on with my life. While I wish I had never gone through that experience, I have used it to shape my perspective in so many ways.

When I was “non-weight-bearing” and in a wheelchair, I learned that although being in a wheelchair was hard, inconvenient, and frustrating, I was still able to enjoy life. The “how” of my daily activities changed, but I could still love on my family, experience wonderful things, recover, and stay whole.

Since then, a quick survey of my injuries in the immediate aftermath of a fall usually ends with me thinking, “This fall wasn’t as bad as my ankle-breaking fall. If I managed to bounce back from that, I can bounce back from this, too. I’ll be OK.”

I have also learned how vitally important it is to adapt. When I started using a walker, I was convinced it would only bring complications into my life. I thought it would be a constant reminder of my disability and would cause friends, family, and strangers to view me as weak. After getting used to my mobility aid, however, I learned that my worries were mostly baseless.

It’s not always easy to pause and rise above your feelings. If you just turn away from or ignore your challenges or uncertainties, that is a choice. And yes, it is an appropriate one at times, particularly when you’re in the middle of another challenge or aren’t sure which approach to take. Inaction can sometimes be the best response, but knowing when to do that requires perspective.

As I always say, FA is incredibly humbling. We are all learning as we go. There is no single right way to universally respond to challenges. Just know that you have the power to make a choice. Overcoming challenges, both big and small, in order to move forward with life is worth it, in my humble opinion.

“Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.” — Galatians 6:9


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.

Comments

Leave a comment

Fill in the required fields to post. Your email address will not be published.