When I was little, SMA wasn’t widely known or understood. Its rarity meant that few people had heard of it unless they were confronted with it. Families like mine carried much of the responsibility of sharing our knowledge and experience to educate others, from friends to medical professionals, about…
From Where I Sit — Halsey Blocher
Halsey Blocher is a young woman who was diagnosed with SMA Type 1 in 1999 after a blood test revealed a deletion of the survival motor neuron gene. She now lives with her loving family in Fort Wayne, IN and spends her free time reading, cooking, creating, and enjoying life’s blessings. Halsey is passionate about her work as a Column Lead at Bionews Inc. as well as volunteering with various local organizations. Writing is her lifelong dream, so she uses this gift to advocate and offer glimpses into everyday life with SMA in the hope that it will inspire readers to seek the positive in every situation
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Nearly anyone that knows me knows that pasta has been my lifelong favorite food. We stock a variety of shapes and flavors in the pantry so I always have different options to choose from. Among them are single serving, microwaveable mac ‘n cheese cups. A few weeks ago, I realized…
For many years, there was a quote hanging in our local zoo, but I no longer remember if it was by Edmund Burke, who (rightly or wrongly) is credited as saying, “Nobody made a greater mistake than he who did nothing because he could do only a little,”…
One night, I was woken by a beeping noise. That’s not altogether unusual, because alarms from my medical equipment occasionally sound throughout the night. I’m so accustomed to it that my mind sometimes incorporates the sound into my dreams instead of waking me. But this one was unfamiliar. What was…
Have you ever solved the world’s problems? I have. Well, sort of. That’s what we say we’re doing when Mom and I get together for coffee with our friend Connie Chandler, a fellow SMA News Today columnist. Our deep conversations often feel like they provide answers…
Today is my 28th birthday! As anyone in the SMA community knows, age is not a privilege guaranteed to those of us living with the disease, so every birthday — and every individual day — is worthy of celebration. But 28 years of life is not something I…
I’ve long dreamed of visiting the Georgia Aquarium in Atlanta to see their famed whale sharks. Something about the gigantic yet peaceful sea creatures tugs at my soul in a way that made me crave seeing them up close. Eventually, that dream became a reality as well as…
It surprised me to open my email one night to find a message from my colleague Michael Morale. Well, it wasn’t really from Michael. It was from his Otter, a virtual assistant that had attended a company meeting for him that day and sent notes to everyone with…
While you might recognize Val Kilmer from iconic films like “Top Gun” or “Batman Forever,” the first of his movies I saw was probably one of my mom’s favorites, “The Saint.” It’s the story of an orphaned con artist who, stripped of his own identity in…
One of my favorite things about springtime is the return of the local bird life, especially the songbirds. While certain species stay through the winter, the warmer weather brings forth a flurry of feathers as both year-round residents and seasonal visitors bustle with new activity. I can’t claim…
When I backed off my van’s wheelchair lift, I didn’t find what I expected to. We had just parked at a restaurant we’d never been to in a different town, and I knew there would be a ramp onto the sidewalk to my left. I just didn’t think it would…
I didn’t expect to find myself participating in a Valentine’s Day card exchange as an adult. I thought such festivities were (sadly) reserved for kids. But then a friend shared a Facebook post last year inviting people to join a card exchange for anyone with SMA and their…
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