I was diagnosed with spinal muscular atrophy (SMA) in the mid-1980s at 18 months old. At the time, doctors explained to my parents that, because it is a genetic disease, there was a chance that they would have other children with SMA. Research shows that there is a 25%…
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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Over the course of three days, I recently had the joy of attending three live music concerts, each with its own distinct setting, energy, and story. I knew the performers, I loved the music, and I was grateful to be there, surrounded by the kind of shared excitement that only…
A sick feeling sank like a rock in my stomach. My wheelchair would not fit in the airplane cargo hold, the airline employee told me. My only options were to refund our tickets or reroute us through another airline. My caregiver and I sat there, surrounded by our carry-on bags…
I’m getting ready for a trip to see my dear friend Christi get married this month. It’ll be the first time I meet her soon-to-be-husband in person, and from what she’s shared about him, I am so excited for that moment. Apparently, she has told him a lot about me…
It is always an interesting and fun challenge to navigate my limits and needs while living on my own with SMA. I have a wonderful community of friends and caregivers who come to my house throughout the day and night to assist me. Still, I am constantly on the…
As someone living with SMA, I’m really thankful for the creative products that have been designed and invented to make mobility easier for me. Some of these are add-ons to my wheelchair that we’ve purchased, some my dad has made or modified, and some are things my friends have…
How can I possibly show the deep appreciation that I have for the caregivers in my life with spinal muscular atrophy (SMA)? This is a question that burdens me often when I feel weak, inadequate, and overwhelmed by their compassion. But today is Caregiver Appreciation Day, so…
I love to volunteer. If I see a need that I can meet, I am eager to jump in. And if someone asks me to help with a project or service, I am quick to say yes. So much of my life with spinal muscular atrophy (SMA) requires me…
My younger brother, Kevan, and I were both diagnosed at a young age with SMA, so we grew up with power wheelchairs and powerful imaginations. We lived most of our childhood in our own pretend play world, where we could be spies, horse farmers, and baseball players; we…
For the past two years, my friend Pam and I have attended Night to Shine, a special prom event held in cities around the world on the same night, created by the Tim Tebow Foundation to celebrate and honor people with disabilities. This year it takes place on Feb.
“Are you kidding me?!” Mandy’s wide eyes and dropped jaw expressed her genuine shock. Chelsea and I were discussing our recent frustrations with inefficiency and a lack of dignity in disability services, such as hospital care, wheelchair repair, and insurance policies. Chelsea chuckled, and I shrugged my shoulders. Nope, we’re…
This January has been exceptionally and brutally cold! As a summer girl, a sun chaser, and an adult with spinal muscular atrophy (SMA), there are so many reasons why winter is my least favorite season. The cold tightens my muscles, it is all too easy for me to get…
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…
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