While I wasn’t born into the generation that treated vinyl records as art, I can metaphorically relate to that timeless era. The same lyrics, the same situations, keep playing on repeat—until that déjà vu stops feeling like a coincidence and becomes the norm. How do you begin to break the loop when this is just how it’s always been…?
Day in and day out, I wake up to one of two billowy-shaped figures (my parents/caregivers) who de-pillow me and stretch out my hips—which, by the way, love to lock up out of pure spite. I swing from my trapeze-style TRX straps and shift from airplane mode into work mode. Fast forward 3.5–4 hours later—vestibular haze, respiratory treatments, bathing, and the usual—I’m technically “ready” for the day…and already exhausted.
Mind you, I start working during some of these treatments and plan out the to-do list that never gets done. But like any song, the volume fades, the beat slows, the track becomes outdated, the scratches make the audio distorted, and in my case, my body’s protests grow louder. What I would give to be free of the shackles that keep me from fully living. What I would give to be pain-free for just one day. What I would give to be “normal”—whatever that even means—and finally live the life I’ve dreamt about. When will I walk again? When will my vestibular issues be resolved? When will…when will…when will…
Instead, I’m stuck playing the same old song on loop till the end of time. If I had to explain what it’s like living with a physical disability and chronic illness, I’d say: picture a drained battery because that’s the reality. From managing chronic pain and fatigue, to navigating surgeries and the domino of symptoms that follow…from juggling appointments and therapies, to the guilt of feeling like a burden, the isolation, the crashing productivity—this is the behind-the-scenes footage no one asks for or wants to see. Recharging takes hours. Sometimes, days. That’s why you learn to adapt. To push through. Because your battery will always hover way below 100%.
Now, while my condition isn’t considered degenerative (meaning I won’t necessarily worsen over time), the hurdles continue to evolve as I age. It’s terrifying when your entire existence relies on caregivers…who are also getting older. Without them, I can’t survive. That’s one of my deepest fears—even with the contingency plans I’ve set up with my siblings. Where will I go? Ohio with my sister (who has two cats I’m allergic to…and a pizza-less situation I simply cannot condone)? Or Maryland with my brother, who lives in a townhouse that is basically a stair master challenge?
Even thinking about transferring all my benefits to a new state gives me hives. It takes months. It’s in those moments—the logistical nightmares and “what ifs”—when the reality of how disabled and medically fragile I truly am hits hard. What a combo, right? I’m such a catch. Each year brings new curveballs. More surgeries. More uncertainty. As your body ages, things shift—organs get moody. Sometimes they surprise you (and actually decide to show up to work), and sometimes they betray you—and suddenly your whole system needs a tune-up like you’re all of a sudden a NASCAR vehicle.
So while one part of me is fighting to build a life worth living, the other part is bracing for the crash. It’s like carrying a weighted blanket on your back 24/7—only it’s not cozy, it’s existential and anxiety-provoking. And to this day, there’s still no cure for Nemaline Rod Myopathy (NM). Other forms of Muscular Dystrophy get the attention, the funding, the glitz, the glam, the whole VIP treatment. NM? Never been the “sexy” disease. Never will be.
Sometimes I feel deeply alone in this broken-record existence. This topic—what it’s really like—is taboo. No one teaches you how to live with this kind of grief. But maybe if more people in the disability community started speaking up, it wouldn’t feel so lonely…or so scary. Maybe I just feel everything a little too much.
For now, I channel my inner Carrie Bradshaw, open my laptop, and keep writing—because when the music won’t stop looping, you might as well rewrite the lyrics, one note at a time.
Opinions expressed are solely those of the writer(s) and do not necessarily reflect the opinions of Able News at The Viscardi Center and/or The Viscardi Center.