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…
Caring Together
– Connie Chandler
Connie Chandler is a Christ-focused care and support specialist at the nonprofit organization Joni and Friends. 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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“Are you ready?” My caregiving friend stands beside my bed, poised to uncover me in the morning. I utter a very unladylike groan and clutch the edge of the warm blanket that is tucked under my chin. No, I’m not ready! The days are growing shorter and colder; the sun…
I recently returned home from a seven-week holiday at my parents’ house. It’s become my annual tradition, and for a lot of reasons. It gives me a good chunk of quality time with my family, and the weather in the South is usually at least 10 degrees warmer than it…
“How did your parents do it?” People have asked me this many times over the years. It usually comes up when they learn of some aspect of my independence, an accomplishment, or something else that impresses them about the way I live my life in a wheelchair with spinal…
It’s that time of year when people are thinking about resolutions, things they can do to improve themselves in 2026. Whether it’s losing weight, gaining muscle, learning a new skill, or going on an adventure, many of us like to set goals, make plans, and hope that, by…
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…
Seeking inspiration for this week’s column, I asked: “Hey, Mom. What is a favorite memory you have of our family traditions during the holidays?” “That’s easy,” came the surprisingly immediate response. “Sugar cookies.” The two words brought a smile and a flood of nostalgia to me. Every December, for as…
One thing I love about this time of year is a little extra indulgence: twinkle lights, sugary sprinkles, and of course, a generous dollop of whipped cream on top of, well, everything! These details may not be essential to our health and well-being, but they are beautiful and delicious and…
Last in a series. Read part one. Last week, I wrote about my wheelchair and how, even though I get frustrated or embarrassed by it sometimes, I’m thankful that it gives me comfort, support, mobility, independence, and opportunities to raise awareness. Another thing I often complain about is…
First in a series. In this season of Thanksgiving, it is easy for me to declare my gratitude for my family and friends, the generous and caring community that surrounds me and enriches my life. I write about these people and relationships often. They are the primary theme of my…
Throughout the summer, my favorite pastime is just to be outside, for long walks, porch talks, picnics — any reason to bask in the sunshine. But as the days get cooler and shorter, I prefer to be inside and find crafty things to occupy my time. Over the years, I’ve…
“Take the burden from my arms/ Take the anchors off my lungs …” This is the opening line to “Live It Well,” one of my favorite songs, by Switchfoot, one of my favorite bands. I woke up listening to it last week, and was struck by how…
“If you need anything at all, don’t hesitate, just give me a yell!” Pam says on Saturday nights as she tucks me into bed. “OK, you, too!” I reply, and we giggle and bid each other good night. She closes my bedroom door and goes to sleep in the adjoining…
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