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I’ve slept with a BiPAP machine every night since I was 1 year old. (I’m 33 now.) This noninvasive ventilator delivers pressurized air to my lungs, providing my weakened muscles some respite by taking over my breathing work. Over the years, this machine has become my trusty companion.
I’ve never understood why some people are weird about wheelchairs. Why the pity? Why think needing to use one is one of the worst things someone could face? I blame my first power wheelchair for my inability to understand. I got it when I was about 9 from…
I’m about to date myself, but hang with me for a sec. Back in my day (which wasn’t really that long ago; I’m not that old), online school was unthinkable. Perpetually online folks like me were seeing the writing on the wall and begging people in power to embrace…
With every caw of a seagull and crash of a wave against the shore, I swore I felt every stressor in my life exit my body. OK, maybe that’s a bit dramatic. But the healing powers of the beach and its background noises are something I’ll never take…
I don’t get sick often. If I feel somewhat draggy, echinacea tea usually works like a charm. When our first two children, Matthew and Katie, were born, exhaustion prevailed. I was mothering and teaching kindergarteners with orthopedic and other conditions, and I was married to…
“Let me go, Mum,” I begged. It was Day 2 of a harrowing hospital stay. My chest had been hurting and feeling tight, nonstop. I couldn’t sleep. I couldn’t eat. I was tachycardic, with a heart rate in the 120s to the 140s. I needed a urinary catheter.
Back in July, I wrote about the small apartment my mom and I used to live in before we moved into a new home when I was 13. In the new house, I have a better bedroom and bathroom, my own kitchen, and a medical supply room —…
In the “Mission: Impossible” franchise, each movie starts with Tom Cruise’s character, Ethan Hunt, opening an encrypted message that outlines his next assignment. As an agent for the Impossible Mission Force (IMF), Hunt uses his unique skills to take down global threats that are too much to…
Since I have spinal muscular atrophy (SMA), my birthday always demands a grand celebration. And this year was extraordinary. Not only am I closer to bidding farewell to my 20s, but I also had the chance to journey back to my beloved hometown, New York City, for…
Jose Flores is a motivational speaker and author from Fort Lauderdale, Florida. He shares his life with spinal muscular atrophy (SMA) type 3 on his website joseinspires.com. Navigating a romantic relationship when one partner has SMA is a journey marked by unique challenges and profound…
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