I write a lot about my able-bodied friends and the ways they care for me. But sometimes the person who can offer the best support and help is disabled as much, if not more, than me. I have many stories snuggly tucked up my sleeves, but I’d like to share…
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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When I was 11 years old, I had pneumonia and spent the week before Christmas in the intensive care unit. Because I have SMA, my pulmonary functions are weaker, and when I get sick — even with a common cold — it can quickly become something much worse. I’ve…
“Connie, can we make some doughnuts?” Two-year-old Eden, with her blond pigtails and soulful blue eyes, asks me this question on a weekly basis. “Of course, sweet girl,” I reply and let her lead me to the carpet in the open space in my living room. “And how many doughnuts…
“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…
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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