“OK, so just pick up my arm and rest my elbow on the table right here, with my hand up toward my face. That’s right. Now do the same thing with my other arm. Yeah, like that, but move my elbows closer together. Great! Now pick up my coffee mug…
Caring Together – Connie Chandler
Connie Chandler is the director of family engagement at the nonprofit organization We Carry Kevan. She grew up in the foothills of North Carolina but now owns a home and lives in Fort Wayne, Indiana. She was diagnosed with SMA type 2 when she was 18 months old. She believes the best way to receive great care is to give great care to those around her. Through her column, she hopes to share funny and sweet stories about her friendships with her caregivers and the ways they are growing together.
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Like most humans in the world, I do not like to cry in front of other people. My life with SMA does not allow me a lot of grace to conceal my physical weaknesses and vulnerabilities. It is obvious to any random stranger that I cannot walk, and…
Confession: I do not enjoy taking showers. Please don’t misunderstand me; I absolutely love the feel of hot water on my skin, the sweet fragrance of scented soaps, the soothing comfort of a shampooed head massage, and the lifestyle of good hygiene! But as an adult with SMA, the…
“Umm, bunk beds?” My mom and I stopped in our tracks, backpacks and pillows in tow, peering into the room where we were supposed to sleep during a fun and relaxing weekend away. Needless to say, it was not the accessible room we’d hoped for. A few months prior to…
With a fresh cup of coffee balanced on my knee, I quickly scanned my church’s cafe area for a place to land where I could have a supportive tabletop. The only vacant spot at a table was next to a 7-year-old boy who sat alone with a cup of hot…
One of my favorite pastimes is cruising the sidewalks of our downtown area all by myself. I have a wheelchair-accessible van, but I need my friends to drive it, which means I rarely go anywhere in public alone. There have been seasons in my adult life, though, when I’ve lived…
In 2001, I was a bright-eyed college freshman, ready to change the world with my bleached highlights, cargo pants, and purple-framed power wheelchair. I felt like I had already achieved and overcome so many things in the 18 years since I was diagnosed with spinal muscular atrophy type 2…
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