Overcoming our Kafkaesque nightmare with a ‘MetamorFAsis’
Life with FA may be absurd, but we can still find meaning and purpose
I tend to find messages of hope and resilience in bleak stories.
Take, for instance, my column about finding hope in the objectively depressing movie “Requiem for a Dream.” Similarly, another unlikely source of inspiration comes from Franz Kafka’s short story “The Metamorphosis.” Last week, when life felt especially difficult and unrecognizable, I found myself thinking about this bleak story. It reminded me to hold on to my purpose and adapt.
“As Gregor Samsa awoke one morning from uneasy dreams he found himself transformed in his bed into a gigantic insect.”
The opening line of the story immediately drops us into a bizarre scene without explanation, a hallmark of absurdist storytelling. Because Kafka is considered a major figure in absurdist literature, the term “Kafkaesque” is often used to describe bizarre predicaments that render the characters helpless and their actions meaningless.
When I read “The Metamorphosis” in high school, I didn’t see how the tale applied to my life. I was just an average teen, after all, with the early symptoms of Friedreich’s ataxia (FA) beginning to emerge. I downplayed and ignored my diagnosis back then, believing I could hide it from the world. Kafka’s story seemed irrelevant to my situation — or so I thought.
When the absurd is normal
Gregor wakes up transformed into an insect (likely a beetle), yet the story delves into Gregor’s efforts to navigate his new reality instead of exploring the reason for this. He must figure out how to eat, drink, clean himself, and move around — and he never seems to question why this has happened.
I once saw no connection between Gregor’s plight and my own experience with FA.
For one thing, FA didn’t ambush me overnight. Its progression was slow, gradual, and easy to ignore at first. A decade after my diagnosis, I began relying on a wheelchair for long distances. Over time, I added more tools to support my daily life, such as a shower chair, handlebars near my toilet, a wheelchair-accessible van, and a personal care attendant.
Slowly, I found myself in a body that seemed increasingly uncooperative and, at times, utterly helpless. This helplessness wasn’t just physical; it was emotional, too. Watching parts of my former self slip away left me feeling powerless against the changes.
With no cure, sometimes life with FA feels hopeless, destined to end in frustration and isolation — just like Gregor’s story. Even I feel this way at times.
Overcoming our nightmare by adapting and adjusting
It took me a long time, but I now see that the Kafkaesque nightmare of “The Metamorphosis” is a warning, not a prophecy. Gregor’s story warns us that when we view ourselves as helpless and our lives as meaningless, we risk an isolated death.
Isolation and loneliness are common in FA. They can creep in when, like Gregor, we feel powerless and misunderstood. But through adaptation and finding our purpose, we can reach out, connect, and build a support network that transforms isolation into empowerment.
Instead of succumbing to an isolated death, we must learn to adapt — to adjust and find ways to overcome the absurd challenges FA presents.
One of my earliest adjustments was rethinking how I could help others. Initially, I thought it meant physically being there, but over time, I realized my purpose could be shared through writing and advocating for the FA community.
Adapting isn’t always easy, and it’s not always immediate. But whether it’s finding a new routine, embracing assistive devices, or simply allowing yourself space to mourn the changes, each step is a little victory against the absurdity of FA.
Overcoming our nightmare by asking why
You might point out that Gregor, too, tried to adapt by learning how to eat, drink, and move in his new insect body. But another essential way to survive FA’s progression is to do what Gregor did not: ask why.
As someone who appreciates existentialism, I believe finding our purpose — our “why” — is crucial for survival. Even if our purpose seems simple or incomplete, it helps us adapt to life’s sometimes absurd circumstances.
A big part of my purpose is helping others, and I try to adapt that lofty idea into something I can realistically do each day, like reaching out to a friend. Maybe your purpose lies in your work, your family, your school, or your accomplishments. What does purpose look like to you?
Gregor’s story ends in isolation because of his inability to adapt and his failure to ask why. But our story doesn’t have to follow the same path. By embracing change and finding our purpose, we can create lives of meaning — even amid the absurd. Each day we adapt — whether by learning new ways to connect, finding fresh ways to adjust to old routines, or simply holding on to what matters most — we reclaim control over our own story. FA won’t take that away from us.
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.
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