“Lord, what will become of me/ Once I’ve lost my novelty?” was the original lyric sung in Taylor Swift’s “Nothing New,” a bonus track she included with her recent remaster of her 2012 album, “Red.” Yet, for some reason I heard her sing,…
As Christmas and the end of the year draw near, I’m reflecting on what 2021 has meant to me. If I look at the past year through a pessimistic lens, I could easily say, “Nothing has changed.” I’m still stuck at home because of the pandemic, and there’s still…
December is replete with giving opportunities in the form of holiday presents, donations, and volunteering with myriad charitable causes, making its designation as National Giving Month apt. It’s a natural extension of Thanksgiving. Virtually anything can be a gift. Any time. *** My husband, Randy, and…
Christmas is my favorite holiday for many reasons, and gift-giving is just one. I genuinely enjoy hunting for the perfect gift for everyone on my list. It’s one of the ways I express love, and watching family and friends open hand-selected surprises brings me as much joy as opening my…
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…
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…
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