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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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