Columns

(Note: This column contains spoilers for the movie “Five Feet Apart.”) The 2019 movie “Five Feet Apart” focuses on a young couple, Stella and Will, who fall in love while receiving treatment for cystic fibrosis (CF). Their love is dangerous, though, because coming within 6…

Last in a series. Read part one here. Previously, I wrote about an extremely important topic: safety while using the Passy Muir Valve (PMV). This wonderful tool helps people with a tracheostomy improve their vocal communication by redirecting “airflow through the vocal folds, mouth, and nose.” However,…

Although I rarely have a chance to read the work of fellow columnists here at BioNews, the parent company of this website, it’s evident that I’m in the midst of some stellar writers. Halsey Blocher, who is the columns lead for my group of writers, and…

Content warning: This column discusses medical trauma. Last in a series. Read part one here.  I knew something was wrong when I started throwing up. After an eight-hour wait in an emergency room far from home, I’d finally gotten my feeding tube replaced — not by a medical…

For kids, February tends to entail a Valentine’s Day party for every activity, club, or team they’re a part of. Our mom used to take my brother and me to plenty of these parties when we were little, as we were actively involved in church, disability organizations, and our…

With Super Bowl LVIII around the corner, it’s a bittersweet feeling for avid football fans like me who enjoy watching countless hours of football every week. On the one hand, the thrill of the most exciting game of the year fires me up. But on the other hand,…

One of the hardest aspects of the SMA journey is a loss of independence. If I reach back into the deepest depths of my memory, the first time I can recall this happening was when I started using straws as a child. My mum had noticed I was…

For most of January, my calendar was filled with appointments and procedures. I’ve found that a crowded schedule isn’t out of the ordinary when living with SMA. Taking care of myself is a full-time job — one that I didn’t sign up for, but still face with strength…

I was apprehensive when I was wheeled into my neurologist’s clinic on Jan. 18. I had taken my last dose of Evrysdi (risdiplam), a life-changing oral treatment that can improve motor function in SMA patients, during the last week of September. That was four months ago.

Content warning: This column discusses medical trauma. First in a series. Who really knows what time it is? 11? 12? 1? Time blurs when you’re on the precipice of something that will throw a wrench in all of your plans. I’m lying in bed in our newly purchased…