Columns

Loved your article. Thank you for sharing. It was lovely and so on point. My children have SMA Type 2. They are doing well and loved hearing your perspective.

Of all the works of art in the world, the one masterpiece with an undue influence on my writing is the Broadway production of “Hamilton.” Maybe it’s a cliche for a writer and musical nerd in her 20s to say this, but when I listened to the…

Late last month, I posted a Reel for Disability Pride Month about comparison. I’ve written previously about jealousy and the dangers of comparing yourself with others, especially when you’re living with a chronic illness like SMA. You lose perspective. You start to blame yourself for things that…

When I say “inaccessibility,” what’s the first thing you think of? You might envision something like a set of stairs, a broken elevator, or a car that’s been carelessly parked in front of a ramp. These do create accessibility barriers for people with mobility challenges such as…

Simply put, I refuse to let the wind of negativity blow me down. My faith in God empowers me to keep the light of positivity shining during and after the storms of SMA. It’s a miraculous thing when you can envision yourself on the other side of…

Lights! Camera! Action! My family’s goings-on might make good fodder for a reality TV show. It’s been a memorable year so far, including my mother’s declining health and death in February; a collapsed ceiling and water damage two months later in…

On the last day of this year’s Cure SMA conference, I sat on a panel called “It’s a Wonderful Life” with other adults in the community. The cheeky title is meant to reflect the notion that adults with SMA can and do have fulfilling lives. It’s a bit…

Sometimes it feels like I’m living two separate lives. I’m very intentional when it comes to social media. My Instagram account is a carefully curated feed of Reels, cat pictures, and pastel-colored infographics. This is my cottagecore life. I wear dresses, listen to classical music, and wish…

Note: This column includes thoughts about suicide. Resources for help are listed at the end of the column. On a brown and white display cabinet in my living room are two framed pictures of me. One was taken in a professional studio when I was about 6 years old.

As I write this, my dad debates the longevity of one of my favorite dresses. I bought it used, so I don’t feel bad retiring it. But my dad is hesitant, despite the fact that he throws a fit every time I put it on. I’m purging my wardrobe,…