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 a…
Columns
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 what had been…
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 ironic,…
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 I…
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. I’m…
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, so…
If you’re a regular reader of my column, you might have noticed that it usually ends with a positive spin. Once, I even wrote about being thankful for things that don’t seem very good. I won’t deny that life with SMA has negative aspects, but whenever possible,…
The other day, I had an appointment at the hospital to change my nasojejunal (NJ) feeding tube. Since the tube is placed in my jejunum, a part of the small intestine, and not my stomach, these procedures have to take place under fluoroscopy at a hospital.
Thinking about parallel universes can be scary. Sometimes, though, it’s necessary to think about the scary what-ifs in order to be more aware of the positive things in life. More on this in a minute. For my friend and fellow columnist Halsey Blocher and me, looking at the bright side…
The homework assignment in fifth grade involved music. I probably wrote a few short reports about composers and attempted to draw some instruments with my dual-ended map colors. I wrote “Music” on the outside of the blue folder and added some spiffy artwork. Good spelling came naturally…
