A Day in the Life with SMA Type 1

     I’m the badass boss of my power wheelchair empire, tackling life with Spinal Muscular Atrophy Type 1 like it’s a sassy stand-up routine. SMA Type 1 means I’m quadriplegic, hitched to a ventilator for breathing, and dining via G-tube like a sci-fi foodie. My muscles are on a permanent siesta, but my brain’s throwing a damn rave, and my humor’s sharper than a porcupine’s quills. I also deal with depression and anxiety, not always tied to SMA, but sometimes amplified by it. With my nurses and dad keeping my show on the road, here’s my day—part routine, part circus, all me, with a sleep-in schedule that tells mornings to take a hike.

Early Afternoon: The Grand Awakening

     I don’t even blink at waking up until 12:30 or 1:00 PM because SMA Type 1 and early starts are like water and a Gremlin—hell no. My alarm’s some pop tune so annoyingly peppy it could sell energy drinks. One of my nurses struts in like a roadie for a rock legend, checking my ventilator (my air-pumping VIP) and propping me up in bed with pillows to sit comfortably. It’s like I’m headlining a lazy lounge act, minus the sparkly cape.

    First up, I’m hooked to my nebulizer—a lung-loving fog machine—while I dive into the internet on my Tobii Dynavox. This beast is an eye-gaze communication device, a tablet with a camera that tracks my eyes so I can surf, type, or roast bad memes like a cyber-sorcerer. It also lets me control my wheelchair when I’m ready to roll, like I’m a captain steering with my stare. While I’m scrolling Facebook for the latest updates, my nurse handles trach care—keeping my tracheostomy tube clear so I can breathe easy—and G-tube care, prepping my feeding tube for action. Bed bath’s next (because I’m too damn fabulous too have body oder like Shrek is his swamp), followed by tooth-brushing, which is less “spa vibe” and more "don't drown me with mouthwash." My nurse also does chest percussion to keep my lungs from acting like divas—it’s like I’m a human bongo, and I’m half-tempted to demand a dubstep remix. Meds flow through my G-tube, keeping my system smoother than my sass.

Afternoon: Owning the Digital Game from Bed

     I stay propped up in bed, killing it at my work on my Tobii Dynavox. My setup’s a tech nerd’s fever dream: eye-gaze tech for typing, a speech-generating device (SGD) for dropping verbal fire, and a monitor angled like it’s bowing to my brilliance. SMA Type 1 keeps my body on ice, but my eyes are out here running the show, zipping across the screen to tackle whatever project I’m working on. I’m in the zone, cranking out tasks with the focus of a hawk, even when depression and anxiety tries to throw me off my game. I sometimes even tell Alexa to change my lights to a fancy color and put a Hawaiian beach on my window (A.K.A TV). 

     I take a breather to surf Facebook on my Tobii Dynavox. The internet’s a glorious mess, and I’m tempted to lob a meme about my ventilator out-snoring a bear. Instead, I drop a quick update about my day, and my friends toss digital glitter my way. SMA keeps me homebound, so Facebook is my chaotic coliseum—think of me as the gladiator of snark. My nurse swaps my G-tube bag for a midday “snack” (more formula, but I’m dreaming of pizza), and another round of meds slides in.

Evening: Wheeling into Action

     Around 5:30 or 6:00 PM, it’s time to transfer to my power wheelchair with the Hoyer lift—finally rolling out like the queen I am. My nurse or dad drives my wheelchair, or I take the helm using my Tobii Dynavox’s eye-gaze controls, steering with the precision of a damn sharpshooter. They make sure everything’s secure, and I’m ready to roll, feeling the freedom of movement, even if it’s limited. I’m back on my Tobii Dynavox, either hammering out more work or diving into a romance novel or fairy tale with a twist—because a sassy retelling of Sleeping Beauty or a steamy love story beats SMA drama any damn day. I’m flipping virtual pages with my eyes, living my swooniest life.

Night: The Late-Night Bash

     Dinner is another G-tube formula rave, with meds to keep me kicking. My nurse hooks it up, and we fire up a game show, reality competition, crime drama, or sometimes a comedy on TV. I’m cackling (via SGD) at a contestant’s wild guess on a game show or glued to the tension of a crime drama’s plot twist. I get back to bed at 10:30 PM with the Hoyer lift, propped up to sit comfortably, and keep the party going, flipping between romance novels or twisted fairy tales and TV—more game shows, reality competitions, crime dramas, or the occasional comedy that’s dumber than a sack of hammers. Sometimes, I play board games with my nurses, strategizing and laughing as we battle it out over a game, my Tobii Dynavox helping me call the shots. Not to toot my own horn, but I usually squash my nurses like bugs and send them crying. I'm queen of games. Another G-tube med dose hits, keeping my system tight.

Late Night: The Epic Wind-Down

     Sometime before bed, my nurse does another round of chest percussion to keep my lungs in check—another human bongo session, and I’m still waiting for that dubstep remix. I stay propped up in bed until 3:00 AM because I’m a night owl who laughs at sleep schedules. My nurse or dad adjusts my ventilator and positions me like I’m the queen of the galaxy. Once settled, I’m back on my Tobii Dynavox, reading about a fiery romance or a fairy tale where the princess calls the shots, or watching one last episode. I reflect on the day: it’s a storm of tech, teamwork, and raw grit, but I’m out here ruling like a legend.

     Before lights out, I use my Tobii Dynavox to check tomorrow’s schedule. Another day of owning my world, one eye-blink at a time. SMA Type 1’s a pain in the ass, with my depression and anxiety that can be a hell of a tag team, but I’ve got God, nurses, friends and dad who’ve got my back, with humor that can slice  steel, and a Tobii Dynavox that’s basically my lightsaber. Bring it, universe.