First in a series. As someone with SMA, I often think about the safety of my care. Many years ago, I told someone I’d been busy training a new nurse, and the person I was talking to responded, “Ari, you made me laugh out loud!” What was so…
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My husband, Randy, and I sat across from the pediatric neurologist, eagerly anticipating his opinion of what was affecting our 8-week-old baby, Jeffrey. I say eagerly because I’m an optimist, and I’d taught kindergarteners at a self-contained school for children with multiple disabling conditions. I felt confident that we’d…
Once upon a time, a pandemic enveloped the world and put my life on hold for years. With a weakened body due to SMA, and without knowing what the virus that causes COVID-19 was capable of, I decided to hunker down and prioritize my health. But while I…
When rumors began circulating years ago that a certain blue police box time machine might be getting an accessible makeover, my interest was more than piqued. Would a ramp truly be added to the TARDIS when the British sci-fi show “Doctor Who” returned to the air late…
Whenever it snows, I feel like I’m inside a snow globe. The sparkling flakes daintily scurry down, covering the glistening trees and other surroundings. Everything feels magical for a moment in time until, suddenly, the reality of being in an actual snow globe hits me. I’m trapped. Every year, I’m…
At a routine dental cleaning over a year ago, the dentist informed me that a molar with an old root canal would need to be removed at some point. To prolong the tooth’s stay in my mouth, she applied a special gel then and at subsequent cleanings. All was fine…
I used to have this bracelet I loved. My dad bought it for me on a whim on my 16th birthday. We were walking through a high-end department store where he spotted a Swarovski counter. He immediately went up to the salesperson and said, “I want to find something for…
When I was in Washington, D.C., last October for a Cure SMA advocacy conference, I used the Metro station to get to and from the city’s Capitol building. I hadn’t taken a train or subway in years, and my blatant lack of direction as I fumbled through the…
When I chose my theme for 2024, I didn’t expect to take it for a spin before the year even started. Every December, I start thinking about a word or phrase that will guide me through the next 12 months. I usually pick a theme and stick with it, but…
This may be an unpopular opinion, but I don’t buy into the hype of New Year’s resolutions anymore. For years, I would set goals and articulate my intentions. I made vision boards. I followed the traditions that come at the start of each new year. However, with introspection and…
