Reflections of an MS Activist

March 24, 2025

I am writing from the lobby of the DC Westin during the MS Public Policy Conference, and the first thing you need to know is that I discovered that the two buttons on my blouse had come undone approximately five minutes into this morning’s panel discussion on Medicaid.

Ha-ha! How embarrassing, but good I noticed, right?

Dear reader, I have trouble with the largest, most cooperative buttons. I don’t stand a chance against these wafer thin, slippery little MFs. And while I am not shy, I am not quite up to asking near-strangers to fiddle with my bust. (No matter what you’ve heard about me.) So here I sit, typing with blouse agape, grateful that my clasp-free bra resembles a tank top.

I’m not around people with MS often. Or at all, really. While the internet has given me lots of international pals (hello Dom!), I’m light on local connections. So being in a room full of folks wearing orange, some even using mobility aids, is nearly overwhelming. I fumble at the coffee station, someone swoops in to help. My DC-based counterpart offers her room should I need a rest. My every need isn’t tended to, but it sure is nice neither having to ask nor explain.

Not everyone here is personally afflicted (though most are affected—MS usually requires a personal connection to inspire involvement. I know this, and yet as I look around the room, resisting the urge to count the scooters, I can’t help but wonder how I drew the mobility short straw. As that “why me?” voice creeps in, so does another, harshly whispering, “You know MS is an invisible illness. Would you rather be in constant pain, you ingrate?!” And I wouldn’t. Probably. No, definitely. Right?

Tomorrow my scooter and I head to Capitol Hill to lobby for restored funding for research and Medicaid. Note to self: wear a shirt without buttons.

P.S. Walk MS is weeks away, and I’m raising money again. Donate here if you like. xo