Caring Together
– Connie Chandler

Someone recently suggested that I write about my school days and what it was like growing up with spinal muscular atrophy (SMA). My initial reaction was to scrunch up my face and shrug, because my experience in school felt very normal to me, nothing especially remarkable or strange about…

A caregiver recently told me that the more she spends time helping me, the more she learns what I care most about. This longtime friend already knows that I care about faith, relationships, stories, advocacy, and sunshine, so what she was referring to are the tasks I need done because…

Because I live with spinal muscular atrophy (SMA), I have used a power wheelchair for most of my life. As far as I can recall, I have had seven different chairs, each one unique in its level of comfort, durability, and advanced functions. I’ve always had a complicated…

I have a really special and pretty large friendship caregiving team, which I write about a lot in this column. Because I live with SMA, I need plenty of help, and I am grateful for all the wonderful friends who do so much. Mostly, my caregivers are…

There are moments when I forget that I have spinal muscular atrophy (SMA). Does that surprise you? It surprises me. It’s not as if this is a new diagnosis that I’m still adjusting to. I’ve lived with this disability for as long as I can remember, and…

Some of my earliest memories are of my mom helping me get dressed up for ballet. Nothing says prima ballerina vibes like a leotard, some tights, and chunky 80s-style leg warmers. I was 4 years old, and I wasn’t actually going to a ballet lesson; I was going to my…

When my caregivers fetch my shoes in the morning and my feet effortlessly slide right into them, more than one of them has smiled confidently and remarked, “Ah, now that’s a sure sign that it’s gonna be a great day!” And it is true. Despite the complications of having weak…

Do you remember the summer of 1998? It’s been a while, so let me remind you. It was the season of blockbuster movies like “Saving Private Ryan” and “The Mask of Zorro.” The airwaves were filled with hits by stars like the Backstreet Boys and Shania Twain,…

I wiped away tears of happiness and hugged my friend Andrea. She was engaged to be married and had just asked me to be her maid of honor. Of course, I said yes with all the joy in my heart! I love both her and her fiancé, watched them grow…

July is my favorite time of year to be active, travel, and chase adventures. Like many people with SMA, cold weather is hard on my body — my muscles get tense, my fingers and toes get icy, and the heavy layers of warm clothing make it hard for me…

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…