Given the hair-raising books and movies I favored growing up, you’d think I’d have uttered a scream at some point. Genuine screams, however, were reserved for roller coasters until my husband, Randy, became a football coach. Then I morphed into a maniac. Granted, I considered my high-decibel screams warranted because…
Columns
People-watching is one of my favorite things to do at Disney World. It’s a free and accessible activity, and it comes with more surprises than any of the hundreds of rides at the parks. Whereas “It’s a Small World” gets repetitive after a while, observing the public pitfalls of…
As hopeful as I was when starting naturopathy, I didn’t actually expect anything to come of it. Desperate for relief and having tried everything else, I decided it was worth a shot. At the least, I could return to my doctor with the hopeless certainty of someone who has…
Note: This column describes the author’s own experiences with Evrysdi. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Surrounded by beeping machines, monitors, wires, and tubes, I had trouble feeling like anything more than a patient during my hospital…
Crying the moment I saw Taylor Swift on stage wasn’t something I expected to happen. But it wasn’t completely unexpected, either. I realize I’m contradicting myself here, but emotions will do that to a person. They’ll feel exhilarating and paralyzing simultaneously, and yet somehow manage to create something cathartic. That’s…
The 2002 science-fiction film “Minority Report” imagines a world in which a specialized police unit uses psychic technology to detect crimes before they happen. Tom Cruise plays a detective who’s part of the “Precrime” division, and it’s his job to arrest would-be murderers and criminals. Based on the…
I woke up to a text from my friend Sherry: “Babe, you should try this new accessibility tool that just came out. It might help you game!” When it comes to video games, Sherry is the smartest person I know. She freelances as a journalist in the gaming industry…
People with SMA often have very little privacy. Because we lack the strength to independently complete most activities of daily living, we rely on others to accomplish those tasks with or for us. Even intimate activities that warrant total privacy, such as bathing, dressing, and toileting, require the…
Although I’m finding it hard to believe, this month marks 10 years since I graduated college. It feels like yesterday that I was excitedly driving across a stage to receive my diploma. With five long years of hard work in my rearview mirror, I couldn’t help but feel so…
Looking back, I see how I’ve always had an inclination to write a lot. Even in high school 25 years ago, when a test question required me to write a paragraph or two, I would write pages. This was back when I had to use a scribe to write or…
Recent Posts
- The transition to adult healthcare brings both fear and gratitude
- Early nerve-muscle connection flaws set stage for SMA damage
- When fate tested our theory that things happen for a reason
- Evrysdi boosts motor function, quality of life in Asian SMA patients
- Learning to resolve conflict with friends who are also caregivers
