A few years ago, a good friend of mine named Essie found out that her newborn daughter had been diagnosed with SMA. She reached out to me then, as she knew I had SMA, too. She had so many questions, so I went to my mom because she is…
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 you live many years with a disability like spinal muscular atrophy (SMA), as I have, you get used to pain and discomfort being a part of your life. My pain isn’t as severe as that of some people I know, so I’ve never needed long-term treatment for…
Last week, I ran 4 miles in 50 minutes. “Big deal,” you might say. “You ride in a power wheelchair that can go 6 miles per hour.” All very true. Because I have SMA and cannot walk or bear weight, I use a power wheelchair as my primary…
“Come on, girl, just use your four extra arms!” I often tease my friends like this when we’re trying to accomplish a tricky caregiving task together. Some things would go a lot smoother if we had more hands helping out, but because my spinal muscular atrophy (SMA) weakens my…
The other weekend, I was invited to a golf tournament. It was a gorgeous day, and I rarely turn down an invitation for a good time, so naturally, I channeled my inner Rory Gilmore, donned my cutest golfing outfit, and asked my official caddy to tote my clubs…
One of the most common questions new friends ask me is: “Do you drive?” When I’m feeling snarky, I refer to my wheelchair and respond: “All the time.” But I know they are actually wondering if I drive a car. It’s a valid question because many people with disabilities do…
“What are we making for dinner today?” my friend asks as we head to my kitchen. I love when she says “we,” because she knows I like to be an active participant in this process. It isn’t just her making something for me; it’s both of us making something together.
What comes to mind when you think of Labor Day? For some people, it might mean a cookout, a day trip to the lake, or a last, desperate dip in the swimming pool. For me, it conjures up memories of hairspray, big puffy dresses, multiple ringing telephones, video cameras, and…
My parents came to visit me last weekend. For the past three years, I’ve been living on my own, 600 miles away from them. I love my home and my community, and I know that for now, I’m where I’m supposed to be. But there are times when I miss…
“Thanks for inviting me on this trip,” my 9-year-old friend Forrest said to me last weekend. His parents were in the gas station convenience store, and we were alone in the car for a few minutes. “Well, thank you for coming on this trip,” I replied. Honestly, I wasn’t sure…
In my favorite movie of all time, “The Princess Bride,” there’s a scene I love because I can relate to it and have learned a valuable life lesson from it. And today I’m going to share it with you. The three heroes are on the castle…
I recently got a new wheelchair! Thanks to the good folks at Numotion, I’m happy with the upgrades, including a new seat cushion, a phone holder, and headlights. My friends have been asking me what it’s like to be in a new chair, and I’d say it feels like getting…
“I’m feeling a bit Muppety today.” It’s an adjective I made up for myself years ago (meaning “like a Muppet”) because there are just some aspects of having a neuromuscular disability that are hard to describe and explain. But as they say, if you know, you know. Consider the…
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