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…
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…
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 day…
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 to…
SMA Awareness Month is upon us! To celebrate and remind everyone that raising awareness includes talking about our daily lives and relationships, I’m honored my best friend, Brianna Albers, said yes to the crazy idea of us interviewing and challenging each other publicly. Please read her interview with…
Longtime readers of my column will know that I am fellow columnist Sherry Toh’s biggest fan. Navigating SMA alongside her has been one of the greatest honors of my life. This week, Sherry and I thought it would be fun to interview each other — not only…
With that headline, I’d expect this column to belong to my friend and SMA News Today colleague Kevin Schaefer. After all, he’s not shy about sharing less than pleasant aspects of living with SMA, including detailed stories about his trips to the bathroom. But believe…
Before I began writing today’s column, I recorded video interviews for a rather well-known brand here in the United States, focusing on my role as chief creative officer at an adaptive fashion company. While I don’t necessarily love public speaking, the larger issue at hand is often finding a…
SMA Awareness Month is coming up in August. The question for me is, what’s the best way to raise awareness about this disease? My thoughts are that it is best to share that sometimes life can get a little dark for those of us with SMA. Over the past…
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