Columns

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,…

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…

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…

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…

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…

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…

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…

I recently attended my first pop culture convention since the onset of the COVID-19 pandemic. Masked up, I felt right at home among the crowds of “Star Wars” and “Stranger Things” cosplayers passing by. Though it had been three years since my last con, I eagerly anticipated a…

As part of this column, I’ve taken to recording encounters with ignorant — if well-meaning — healthcare providers. Fortunately for me, those encounters have been few and far between. But that doesn’t make those few-and-far-between encounters any less frustrating. A few months ago, I wrote about a trip…