Columns

Adventures with Anaphylaxis

Every time I think I’ve run out of things to write about, life throws me a curveball. Over the past couple of years, I’ve been getting allergy shots on a pretty regular basis. The science behind allergy shots might seem a bit counterintuitive:…

My Love-Hate Relationship with the Holidays

I’d imagine if anyone who knows me were to describe me in one sentence, it would go something like this: “Oh, Alyssa? She’s that writer girl who runs a nonprofit organization for her disease, drinks way too much coffee for her own good, and has an unhealthy obsession…

On Being at the Mercy of Others

I almost accidentally drank chunky coffee the other day. How’s that for the introduction of all introductions? I thought about easing you into it slowly in an attempt to avoid making your stomach squirm. I explored how I could go about this storyline in a manner that would…

Difficult Questions from a Child with SMA

Ella is curious. She seeks answers to the perplexing world of an 8-year-old, always wondering about the things she sees and experiences. She has a keen sense of people and their emotions. When fighting with her brother and sister, she is the one who often offers…

On Being ‘Cool’ When You’re in a Wheelchair

On Halloween this year, I dressed as the Marvel Comics superhero Daredevil. Blind lawyer Matt Murdock by day, and superhuman vigilante by night, Daredevil strikes fear into the hearts of his enemies as the guardian of Hell’s Kitchen. He is one of the most iconic…

Dating, Sex, and Practicing Vulnerability

There comes a point in every SMA patient’s life when someone asks, “Why are you in a wheelchair?” I like to think I’ve gotten pretty good at answering that question. I’ve done the research; I’ve looked up all the scientific terms; I’ve been through my fair…