Finding meaning amid the darkness within
A 2001 film raises existential questions that apply to my life with FA
Written by |
My high school emo self would feel deeply recognized in this column. I’ve always resonated with the eeriness of the 2001 film “Donnie Darko”; it’s a darkness that isn’t loud or theatrical, but rather solemn and quiet. It’s the kind that settles into your thoughts and asks questions without offering answers. The kind that lives in uncertainty, in the spaces where medicine doesn’t yet have solutions and the future refuses to clarify itself.
So it’s no surprise that I saw myself in Jake Gyllenhaal’s character Donnie, minus the bunny rabbit that may or may not be real.
Most viewers get lost in the mechanics of the story, but “Donnie Darko” isn’t really about time travel or ominous visions of the end of the world. For me, it’s about psychology — a mind wrestling with forces it can sense but never fully understand. It explores ideas of internal and external choices that may feel vast, impersonal, and beyond reach. At its core, the movie is a meditation on destiny: whether our paths are fixed, or whether choice still matters within the boundaries we’re given.
Living with Friedreich’s ataxia (FA), those questions don’t feel abstract.
When darkness creeps in
FA introduces you early to the idea that some things are predetermined. A diagnosis arrives like a sentence handed down by an invisible authority. The nervous system changes, and balance worsens. The body doesn’t follow the same trajectory as everyone else’s. No amount of optimism rewrites genetics. In that sense, FA can feel like destiny with a capital “D.”
Viktor Frankl, author of “Man’s Search for Meaning,” wrote that “life is never made unbearable by circumstances, but only by lack of meaning and purpose.” Living with FA often confronts you with that absence. How fast will things progress? What abilities will we lose, and when? What treatments will arrive in time, and which won’t? When answers don’t come, the mind, desperate for certainty, can easily slip into despair.
That’s where darkness creeps in.
In “Donnie Darko,” the idea of a closed loop, of events that must happen, threatens to make choice feel meaningless. If the outcome is already decided, why struggle? Why hope? Why should we care what happens to the rabbits in “Watership Down?” as Donnie asks.
The movie would be hopeless if it ended there. Maybe that’s where many people stop looking. But I’m the kind of person who finds hope in movies like “Requiem for a Dream,” and I think “Donnie Darko” quietly argues something else.
Even inside a rigid framework, Donnie still chooses how he shows up. He still loves. (“I promise that one day, everything’s going to be better for you.”) He still protects others. (“Go home and tell your parents everything’s going to be OK.”) He still sacrifices. (“I hope that when the world comes to an end, I can breathe a sigh of relief, because there will be so much to look forward to.”) Destiny may outline the terrain, but agency determines how we walk through it.
That distinction matters deeply to me as someone living with FA. I didn’t choose this disease. I can’t negotiate with it. But I do choose how I live inside it. I decide whether the unknown becomes a source of terror or a space where meaning can still exist.
Frankl likely would agree: Meaning isn’t discovered by solving life’s mysteries; it’s constructed through action, even when the mystery remains unsolved.
Hope, then, isn’t denial. It isn’t pretending FA isn’t progressive or serious. Hope is the decision to live fully in the present despite knowing the future isn’t guaranteed. It’s finding purpose not because the darkness has lifted, but because it hasn’t.
The movie doesn’t end with certainty, but rather acceptance. And that feels honest.
Living with FA has taught me that darkness doesn’t mean the absence of light. Sometimes it’s simply the place where deeper questions live. And while I may never understand the biological and existential realities that shaped my path, I can still choose compassion, connection, and meaning along the way.
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.
Leave a comment
Fill in the required fields to post. Your email address will not be published.