When I say “inaccessibility,” what’s the first thing you think of? You might envision something like a set of stairs, a broken elevator, or a car that’s been carelessly parked in front of a ramp. These do create accessibility barriers for people with mobility challenges such as spinal…
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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There are often movies from our adolescent years that we continue rewatching no matter how old we get. They feel a bit like being wrapped up in a cozy blanket. I was definitely a Disney kid, so for me, “Camp Rock” and its sequel easily make that list,…
If you’re a regular reader of my column, you might have noticed that it usually ends with a positive spin. Once, I even wrote about being thankful for things that don’t seem very good. I won’t deny that life with SMA has negative aspects, but whenever possible,…
With that headline, I’d expect this column to belong to my friend and SMA News Today colleague Kevin Schaefer. After all, he’s not shy about sharing less than pleasant aspects of living with SMA, including detailed stories about his trips to the bathroom. But believe…
It’s not uncommon to plan for the future. Most of us have at least an idea of what we’d like our lives to look like five, 10, or 20 years from now. Some people even lay out detailed plans for how they intend to accomplish their goals regarding careers, marriage…
On a hot summer day, you will usually find yourself needing a cool drink to quench your thirst sooner or later. You might choose a cold glass of water, lemonade, soda, or iced tea. My go-to is always some type of fruit smoothie, though sometimes I’ll opt for a milkshake,…
Back in November, the latest e-newsletter from We Carry Kevan (WCK) landed in my inbox, and this one included an intriguing request. They were looking for volunteers to serve as ambassadors who would promote the organization’s mission of redefining accessibility in their communities. One area where ambassadors were…
I’m fairly frequently asked what the hardest part of living with SMA is, but no matter how many times I hear the question, I seldom know how to answer it. Each day brings its own unique hardships, so how I respond changes based on the struggles of that particular…
My mom and I enjoy treating ourselves to a relaxing afternoon of mother-daughter bonding at the nail salon from time to time. We don’t have one specific salon that we always go to. While there are some that we like better than others, we often pick one that’s in an…
Somehow, it’s already been three years since I began sharing my story with you in this column. It’s been a beautiful, heartfelt adventure that I’ve thoroughly enjoyed. But I have to admit that when I invited you to pull up a chair back in 2019, I didn’t really…
After moving into our new home a few months ago, members of our family made a trip to the Indiana Bureau of Motor Vehicles to update our IDs with our new address. I had another mission to accomplish while there. I wanted to register as an…
It’s been about two years since I got a message from a friend saying that she would miss seeing me at Turnstone, the local disability center. Earlier that day, an announcement had been made that the building would be closing for an undetermined amount of time due to the COVID-19…
Whenever my family and I meet new SMA specialists, they’re usually rather perplexed by me. They watch in amazement and excitement as my abilities defy the expected progression for an adult with SMA type 1 — someone whose rare genetic coding says they probably shouldn’t be alive, let alone…
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