The days of having a hospital room as a residency are hopefully behind me
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A former caregiver and friend once told me that she’d never spent a night in the hospital for any kind of illness or injury. Despite working as a nurse and surrounding herself with medical scenarios on a daily basis, she’d never experienced a hospitalization from the patient’s lens.
That concept alone boggled my mind. Never a broken bone? A mild case of the flu? Not once?
For those of us living with SMA, hospitals essentially function as our second homes. Whether for emergencies, treatments, or mild illnesses, we spend countless hours, days, weeks, and even months in the confined spaces of hospital rooms. The idea that someone can make it to their adult years without ever having spent even a single night in one is entirely foreign to us.
Even with the medical trauma that I’ve endured during prolonged hospitalizations, there’s also a weird sense of comfort that comes with the familiarity of this particular setting. Yes, I associate hospitals with excruciating pain, coughing up large swaths of phlegm, and relentless poking and prodding. But I also have memories of extended visits with family and friends, forming connections with nurses and other staff members, and reading and watching an endless amount of books and movies. When your only job as an inpatient is to get better, time stands still, and the responsibilities of the outside world fade away.
Currently, I’m on the opposite end of the spectrum. Most of my thoughts and actions relate to my day-to-day responsibilities, while the isolation of a hospitalization feels more like a relic of my past. Sure, I still go to hospitals for clinic visits, my Spinraza (nusinersen) injections, and other medical appointments. Yet it’s been years since I’ve stayed in one for an overnight admission. Although I visited the emergency room a couple of years ago for a pain issue, I received medications and went home that afternoon.
There’s a strange juxtaposition that comes with living with a chronic neuromuscular disability while maintaining good health. During my last couple of clinic visits, I scored higher on my pulmonary function tests than I have in years. My blood sugar levels are currently well managed, and I can’t even recall the last time I dealt with a mild cold or fever. For much of my childhood and adolescence, I anticipated hospitalizations at least once a year. Missing weeks of school at a time became just another part of my routine.
These days, I occupy my time and thoughts with more common aspects of adult life: work, finances, time management, scheduling appointments, friends, family, and which series to stream in the evenings. SMA issues like fatigue, pain flares, and managing caregivers are still present, but my increased health allows me to deal with each of these components effectively.
In many ways, I’m still adjusting to this reality. As much as I don’t miss being stuck in a hospital bed for weeks at a time with a rotation of nurses and doctors checking in on me around the clock, I always knew what to do in those scenarios. Being a patient was my full-time occupation, and I knew the ins and outs of the job.
Adult life with SMA is filled with uncertainty. Although I live with the realities of my disability every day, I don’t consider myself a full-time patient these days. Those days of having a hospital room as a place of residency are hopefully behind me. As far as what comes next, I can’t say for sure. Yet, if I made it through high school with prolonged periods of pneumonia, muscle weakness, and debilitating sleep apnea, I’m sure I’ll continue to navigate life in the outside world.
Note: SMA News Today 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 other 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 SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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This site 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 other 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.
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