Every year at Christmastime, my family carries out one of my favorite traditions. We all gather in the living room — my parents, brother, his wife and kids, and me — and watch the classic Claymation movie “Rudolph the Red-Nosed Reindeer.” To complete our viewing experience, my…
Columns
Most days, I try not to worry about my SMA to the extent that I forget to breathe and live. I attempt to construct a balance in which I’m tending to my health and wellness, fulfilling my desire for disability advocacy, and mindfully living my life as a cool human…
Let’s start this story about Evrysdi (risdiplam) from the beginning. About a year ago, the chronic neuropathy in my scalp that had been bothering me for three years worsened to a point of concern. It started as a mild and slightly nauseating throbbing from the back of my skull…
In the new Netflix original movie, “Tick, Tick…Boom!,” Andrew Garfield plays the late playwright and composer Jonathan Larson, whose most famous work is the Broadway musical sensation “Rent.” The film is based on Larson’s autobiographical musical of the same name. It’s a story of an…
If you were to sort through my medical records, you would notice that some of the files list my diagnosis as “SMA I/II.” I had a good chuckle the first time I noticed this. After all, there is no such thing as spinal muscular atrophy type 1/2. I was originally…
November is a month of personal celebrations and Thanksgiving, a favorite holiday. We’re prompted all month via marquees and commercials to give thanks. We shouldn’t need prompting. And it shouldn’t be a one-month effort. Granted, life isn’t easy for many. However, it usually takes little effort to find someone with…
For someone who has watched many a sex scene in movies and television, the sounds were unmistakable, yet unsurprising. Netflix’s “The Witcher,” based on a fantasy book series by Polish author Andrzej Sapkowski, pulls no punches when it comes to explicit imagery. Body horror, gore, nudity, and sex…
Every Wednesday, I jump on a Zoom call with a bunch of writers and talk. Sometimes we talk about professional things, like revisions, copy edits, or writing to the market. Sometimes we talk about politics. More often than not, we talk about survival — specifically, how to survive as a…
After many months of searching and navigating the challenges of house hunting with a disability (that’s a story for another day), I am extremely pleased to say that we have finally found our new home. And we’re just in time to celebrate the holiday season around the cozy, wood-burning fireplace!…
From my perspective, time is a more important resource to me than money. It’s all about spending my time wisely on the important things so that I can get a good return on my investment. Yes, it’s that old cliché that “time is money.” However, let’s look at…
