“Alyssa, does this look weird?” my mom said as she popped her head and chest out of the bathroom door. We were getting ready to go to a parade in 100 F heat and humidity. Trying to dress in as few layers as possible was definitely a requirement. However, my…
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My husband, Randy, and I moved to the North Carolina mountains in the closing hours of 1995. Although our children, Matthew and Katie, who at the time were 10 and 7, respectively, were initially unenthusiastic about changing schools, they promptly developed new friendships and an appreciation for the plethora of…
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…
When my great-aunt was 100, she used to sing a song that said “count your many blessings.” As I approach another birthday and complete another year on my journey with SMA, I’m counting my blessings one by one. I’ve had plenty of crises — or as I call them,…
One of the queerest ways to spend Pride Month could go like this … You decide to go to the theater one night. You scan the ticketing site for a show and land on one about lesbian identity, struggles, and culture in Singapore. It’d be no fun to go alone,…
When people talk about Medicaid, it often sounds distant or technical. It is usually discussed in terms of coverage, rules, or eligibility. For me, Medicaid is much more personal. It shows up in my everyday life in quiet but important ways. It affects how safe I feel about my…
A former caregiver and friend once told me that she’d never spent a night in the hospital for any kind of illness or injury. Despite working as a nurse and surrounding herself with medical scenarios on a daily basis, she’d never experienced a hospitalization from the patient’s lens. That concept…
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…
Every March, I connect with a county worker to reassess my waiver, which is a federally financed Medicaid budget covering home- and community-based programs. The questions are always the same: How has my health been over the past 12 months? What do I like to do in my free time?…
My mother told me I had fallen while climbing out of my baby bed as a toddler, ending up with a scar that resembled a tiny wad of chewing gum on my elbow. I don’t remember which elbow it was, nor can I tell, as I now boast an impressive…
