It takes a lot to manage daily life with SMA. From the mundane to the extraordinary, everything I do — although it takes much more than just myself — requires a practiced juggling act consisting of medications, specialists, assistive technology, medical equipment, appointments, adequate rest, and helping hands. One…
I did something that I’m afraid to publicly admit. Sure, I did it willingly. And in this corner of the internet, I share my life openly and honestly with those who are willing to read it. So it only seems fair that, despite my hesitancy to share this with you,…
Damn Taylor Swift and her lyricism. I had a different plan for this column, with a different title in mind for it. I was going to ramble about moving out of the condominium I’ve been staying in for almost two years. There was to be a farewell to its inaccessible…
Working with the biotech company Genentech never ceases to amaze me. Back in 2019, when Genentech representatives first reached out to me about an upcoming initiative, I had no idea what to expect. They wanted me to attend a meeting, along with several other people in the SMA…
“Your 60s you’ll have a major surgery, the music is still loud but it doesn’t matter because you can’t hear it anyway. Seventies, you and the wife retire to Fort Lauderdale, you start eating dinner at 2 o’clock in the afternoon, you have lunch around 10, breakfast the night before.”…
After two years of tweaking, my new wheelchair is home for good. I think. Most wheelchair users dread new devices. There’s the process of submitting the claim to insurance, which is frankly straight from hell. Then there’s the seating — a monthslong process that involves strangers studying your body…
Right about now, most people in the U.S. are preparing for Halloween by buying candy for trick-or-treaters, making costume alterations, and planning parties. That’s all fun, but since childhood, I’ve been drawn toward a different holiday: el Día de los Muertos, or Day of the…
Do you ever look back at experiences from when you were younger and view them differently as an adult? I find myself doing that quite a bit lately. Kids look at life through rose-colored lenses. I see that in the way my little niece and nephew are…
It may be annoying to some, but I’m one of those people who look forward to Christmas starting in October. Sorry, not sorry. So many of my favorite memories are either directly or indirectly related to this special day. If you ask my mom, she wouldn’t consider Christmas Eve 1984…
I credit my mother for my affinity for (most) things hair-raising. She loved thrillers. While her vision allowed, she was drawn to the TV shows “Forensic Files” and “Criminal Minds,” delighted to learn that our daughter, Katie, was also a fan. Halloween’s creepy stuff comes…
