Halsey is a young woman living with SMA Type I. She received this diagnosis at the age of 15 months after her parents sought multiple doctors’ opinions and genetic testing — a process that has since been made much easier with today’s technology and understanding of the disease. Halsey is an avid reader and enjoys art and crock pot cooking. She also enjoys serving as a volunteer for a disability center in her home state of Indiana. She is now pursuing her writing dream with the hope of offering glimpses into everyday life with SMA and challenging readers to look for the positive in every situation.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…
It takes a rather large team of specialists and various medical professionals to help manage my care alongside me and my mom, who’s my primary caregiver. That means I have to attend lots of doctor appointments. I’d like to tell you how many of those appointments and medical meetings I…
Have you ever dreamed of being a princess (or a prince)? I think most of us have, adults included. I’ve always been a Disney fan, and it has no shortage of princesses to choose from. Each one is unique, so it’s usually easy to find at least one you can…
Individually and collectively, it’s vital to be sensitive to what’s happening in the world around us. This awareness allows us to be empathetic and strive for change that improves society for ourselves and others. The SMA and disability communities have long battled inequality and discrimination that could…
“Are we wearing a cloak of disability?” my mom asked as a vehicle pulled out in front of our wheelchair van. At least, that’s what I thought she said. It turns out that she actually said “cloak of invisibility,” which made more sense. Although our big, black van is far…
Elephants have long been my favorite animal. I even have a collection of items depicting them. I’m captivated by the majestic giants whose eyes seem to convey vast wisdom and an array of relatable emotions like empathy, joy, humor, and curiosity. So, when I came across an episode of “…
I’ve been blessed to grow up in a city that’s mindful of accessibility and inclusion, which means there’s an abundance of accessible activities to participate in. Throughout my life, this has provided opportunities for me and my family to be involved in a variety of programs and services, including a…
In a tourist shop on the coast of Lake Michigan a few summers ago, my mom spotted a sticker depicting the town’s lighthouse in the style of my favorite painting, Vincent Van Gogh’s “The Starry Night.” She suggested that it’d look cool on my power wheelchair, and…
There’s a trend taking root in the SMA and disability communities that has me worried. It’s the idea that to gain independence as disabled adults, we must separate ourselves from our support networks and find ways to manage our lives and healthcare on our own. Society tells…
Get regular updates to your inbox.
