It’s been 10 years since my last hospitalization.
I’ve waited a long time to be able to say that, because I’ve never been able to say it before. This is a feat of epic proportions for someone with SMA. It’s even crazier when I reflect on the prognosis from my hospitalization 10 years ago: that I wouldn’t survive at all.
To be honest, the severity of my condition at the time makes it hard to remember most of my days inside those hospital walls. It’s a bit of a foggy blur with only short moments of clarity. This cloud of distortion was likely caused by a combination of stress on my body (I was fighting multiple infections) and pain medications. It reminds me of how Pulmonary Hypertension News columnist Jen Cueva describes her memories of a hospitalization in one of her columns.
But the things that I do recall have left a lasting impression.
I remember my exact thoughts as paramedics wheeled me on a gurney through the hallways of my home. We passed the gallery of artwork that my little brother and I had made for what I was certain would be my last time. My family was preparing to move to a new home. I didn’t know if I would never return to this place because of the move or because I wouldn’t survive the impending battle.
I remember the sun shining in my eyes and the frigid winter air cooling my seemingly overheated skin as a paramedic hurriedly carried my frail body toward the emergency room doors, not waiting for the gurney to be unloaded from the ambulance. I blacked out once he crossed the threshold.
I remember never being alone, whether I was unconscious or awake. I can visualize my brother at my bedside doing homework and my grandma sitting on the edge of my bed with a book in her hand. My mom fluttered around the room caring for me alongside nurses and respiratory therapists. My dad drove up from his home to deliver coffee to the rest of my family and take a turn watching HGTV with me. (I watched copious amounts of HGTV while I was in the hospital.)
Even people who couldn’t be with me physically made sure their love, support, and prayers were felt. Colorful cards and balloons covered every inch of space in my room.
I remember escaping from a harsh reality into the fantastical worlds of books delivered by volunteers from a local organization called Kate’s Kart. I eagerly waited for the smiling volunteers to appear with a new selection, which was frequently the highlight of my week.
The stories were often chosen and read by my grandmother. My imagination brought them to life as a way to shelter my mind from what was actually happening.
An enchanted forest sprang up around me. An ugly old witch sat in a hollow tree, futilely chewing on the knots of her cursed rope. Mermaids stared up at me from beneath the surface of a lake. Fairies with butterfly wings danced before my eyes. I saw all of it almost as if it were real, but my reality consisted of five surgeries and a newly acquired feeding tube and tracheostomy.
I remember a trip to radiology to assess my swallowing abilities with the new trach. On the way back to my room, our nurse allowed us to take a detour to the gift shop. Twinkling pastel Easter egg lights had been strung across the store windows. This detour provided a temporary escape from my room in the pediatric intensive care unit, and the simple yet profoundly beautiful sight of the lights filled me with joy and peace.
I remember sluggishly driving my wheelchair through the skywalk and exit on the day I got to leave. My driving arm felt so tired that I thought it might fall off, but that didn’t stop me. I was finally going home.
The scars acquired inside of that hospital didn’t dictate the end of my story.
Some people thought that I was going home to live out the rest of my short existence in the comfort of my own bed. It didn’t seem possible to them that my weak little body could do much more than just survive for a bit longer.
Instead, I went home to finish healing and recovering. After that, I planned to live life to the fullest and thrive. And now, 10 years later, that’s exactly what I’ve done.
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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