Finding ‘Flow’ in the currents of life with FA

Navigating life with Friedreich’s ataxia (FA) involves traversing an unpredictable landscape where each step presents new challenges. This year began with particular frustration for me, yet I find solace in the unwavering support of the FA community and unexpected inspiration from the animated film “Flow.”

Early 2025 was daunting. I underwent two outpatient surgeries in quick succession — the first surgeries of my life, aside from wisdom teeth removal. These procedures left me physically weakened and emotionally drained. Tasks that were once simple, such as transferring from my bed to my wheelchair, became monumental hurdles. Losing this independence intensified my sense of isolation.

While the slow process of regaining independence has tested my patience, I recognize my fortune in being on the road to recovery — not from FA (at least, not yet), but from these surgeries. Even when it’s slow and frustrating, improvement is rare in the FA community. I don’t take it for granted and refuse to succumb to despair.

Recommended Reading

December 17, 2024 News by Margarida Maia, PhD

Skyclarys benefiting many patients in real-world use, doctor finds

Finding similarities between my FA journey and ‘Flow’

Unable to ride my trike, go to the gym, or use my standing frame, I’ve turned to streaming movies and TV series. My nephew recommended “Flow,” a Latvian animated film by Gints Zilbalodis. The movie follows a solitary cat whose home is devastated by a flood, forcing it to seek refuge on a boat with various other animals. Together they navigate their new world, learning to cooperate despite their differences. The film’s lack of dialogue emphasizes resilience and hope, resonating deeply with my own journey.

“Flow” encapsulates facing unforeseen adversities and finding strength in unity. The cat’s journey mirrors what it’s like living with FA: After confronting a life-altering diagnosis, we adapt to new realities and find support in a diverse community. The visual storytelling reminds us that even amid overwhelming challenges, hope and new beginnings are possible.

Reflecting on my experiences, I see that while the path with FA is fraught with obstacles, it’s also illuminated by the connections we forge. Support from the FA community has been a cornerstone of my resilience, providing me with practical advice and emotional sustenance. Engaging with others who understand this condition has transformed my outlook, turning isolation into solidarity. Connecting with those who share similar experiences has been pivotal in preventing despair.

There’s a vast network of people facing FA who can offer empathy, share coping strategies, and provide encouragement. Organizations like the National Ataxia Foundation, the Friedreich’s Ataxia Research Alliance, and the Friedreich’s Ataxia News Forums facilitate these connections, providing resources and platforms for sharing stories and support.

Moreover, “Flow” reinforces the belief that adversity can lead to profound personal growth. The cat’s evolution from solitude to collaboration underscores the importance of embracing change and seeking support. It highlights that while we may not control the challenges we face, we can choose how we respond and who we allow into our journey.

As I continue navigating my recovery and life with FA, I hold on to the hope exemplified in “Flow” and the unwavering support of the FA community. Together, we can weather the storms, find strength in unity, and look forward to brighter days ahead. And may we all find an awesome capybara to accompany us on our journey; mine is fellow FA advocate Kyle Bryant.

For those interested in experiencing the story depicted in “Flow,” here’s the official trailer.

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.