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,…
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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…
Would you trade away your disability if you could? I know many people ponder this, although usually silently, so I thought I’d give you my thoughts for a penny. My short answer is no. Yes, I have days when my disability makes me feel like life is completely draining just…
Travel has always felt like freedom to me. Some of my favorite memories were made on long road trips with friends, crisscrossing the country in my van — from Maine to Florida, the Carolinas to California, Texas to Washington, and through about a dozen national parks along the way. I…
I recently wrote about how I’ve been in the process of transitioning from a children’s hospital to an adult hospital. It’s meant saying goodbye to the place that knew my medical history better than anyone else, that helped keep me alive through countless challenges, and that understood my…
When I graduated from college in 2005, I received a special gift: a large whiteboard to hang on the wall. It had 38 pictures on it showing many of my adventures with SMA and other key moments I’d had over the years. Those pictures have remained on my wall…
