My caregivers give me a wedgie every morning. I’ll let that image settle into your brain before I elaborate. This part of my routine bears no resemblance to the act of torture commonly featured in teenage movies. It’s still uncomfortable, but necessary in my case. Once my morning caregivers, usually…
Jokes are my coping mechanism of choice. If there’s tension in the room, you can bet I’m trying to come up with some way to lighten the mood. I pride myself on staying as chipper as possible, even in difficult situations, like getting stuck repeatedly with needles. It’s amazing what…
A few years ago, I bought a book that I thought would change my life. It was during my self-help era, when I devoured any book I could find that would make me a better version of myself. With thousands of reviews and such high praise, I was curious to…
(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 feet…
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, all…
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 Kevin…
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 professional,…
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 home-schooling…
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, I…
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 having…
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