Columns

How to Make the Joy of Christmas Last All Year Long

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…

Not All Gifts Are Wrapped in Shiny Paper

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,…

The Greatest Gifts Are Filled With Love

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…

Cherishing Togetherness During the Holidays

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…

As an Adult With SMA, I Need Access to Evrysdi, Too

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…

Tick, Tick … SMA Adulthood

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…

Being Rare Is All I’ve Ever Known

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…

Giving Thanks When It’s Not Easy

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…

Yennefer of ‘The Witcher’: A Study in Ableism and Power

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…