When faced with health challenges, I aim to be resilient

Note: This column describes the author’s own experiences with Botox injections. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.​

Living with Friedreich’s ataxia (FA) is a journey that tests the limits of one’s resilience. The progressive nature of this rare neurodegenerative disease leads to symptoms that make daily activities increasingly difficult. Although it’s natural to succumb to pessimism in these circumstances, I hear whispers of hope and perseverance from many people facing overwhelming challenges, both within and outside of the FA community. I aim to join that chorus, or at least echo that sentiment in my own life.​

However, despite my generally positive outlook, I cannot deny that recent times have challenged me, causing me to question my optimism. Opening up about personal hardships is daunting because my instinct is to remain silent and shield myself from vulnerability. Yet sharing these struggles serves a purpose: It reminds others facing similar battles that they’re not alone.

I’ve come to see that a hero isn’t someone who lives a life without challenges, but rather one who perseveres through whatever challenges come their way. I don’t consider myself a hero, but I aspire to show resilience in the face of hardship.

Recommended Reading

March 11, 2025 News by Lindsey Shapiro, PhD

Focus of NORD study: Rare disease community’s lived experiences

A setback in my independence

At the end of January, I underwent an outpatient procedure involving Botox (onabotulinumtoxinA) injections to the bladder. The goal of this treatment is to alleviate the frequent urge to urinate — a particularly inconvenient symptom for wheelchair users like myself.

While many FA community members have found relief through this procedure, my experience was less favorable. The injections caused my bladder muscles to become overly tight, preventing me from urinating independently. As a result, since early February, I’ve had to rely on a catheter — a reality that’s uncomfortable to admit but important to share to help others feel less isolated.​

It’s crucial to note that this is my personal experience. I’m neither endorsing nor discouraging the procedure. Medical decisions should be made collaboratively by patients and their healthcare providers and tailored to individual circumstances.

For me, the past weeks have been challenging. My cherished independence has been compromised; I’ve needed assistance transferring in and out of bed at home, I’ve had to forgo regular showers in favor of sponge baths, I’ve needed help getting dressed every day, and I had to pause my physical therapy sessions at the gym. Even riding my recumbent trike is impossible, and simply leaving the house is almost unattainable. This prolonged recovery has tested my patience and endurance.

Yet I can’t help but juxtapose my struggles against the more severe challenges many with FA endure. I’m not facing life-threatening issues, and I’m fortunate to work remotely, ensuring minimal disruption to my professional life. While I know others face different or even greater challenges, I wonder if it’s OK to talk about my own struggles.

My friend and fellow FA advocate Kyle Bryant offered a grounding perspective: “What sucks for you still sucks. Period.” This sentiment acknowledges that while others may face graver challenges, our personal struggles are all valid and significant.

What you are going through is valid and significant.

What I’m going through is valid and significant.

(I’ve mentioned Kyle in most of my columns this year. Maybe I should broaden my circle.)

Will there be light at the end of this recovery process? I hope so, but I’m also aware that in life with FA, the capability goalposts are constantly shifting. Independence looks incredibly different over time.

Even though this terrifies me, I remain committed to pushing through. This determination is relatable to anyone facing adversity. The definition of living is facing our current challenges and continuing to move forward.

So, live.

If there’s a moral to this story, it’s that we can and should persevere even when suffering occurs. Life with FA is undeniably challenging, but it’s within these challenges that we discover our strength and capacity for hope. Keep looking forward to recovery, reader. I’ll do the same.

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.