Meet the Team: Landy Thomas

We’re excited to introduce a new series of blogs spotlighting SRNA’s incredible staff. SRNA is a small but mighty team, expanding across the country and beyond. We’re excited for you to get to know the faces behind the work!

This month, we’re spotlighting Landy Thomas. Landy joined the team in early 2024 as our new Program Associate for Communications and Community Programs. She is a talented poet and writer who depicts her lived experiences with her neuroimmune condition, NMOSD. She’s undeterred in her mission to raise understanding on how having a rare condition impacts a person’s life, and wants to create art out of that turmoil.

We asked Landy a few questions to help you get to know her a little better. Read below!

What’s the best piece of advice you’ve ever been given?

As a would-be poet myself, I often find the very best pieces of advice I can find are in poems. I really love Neil Hilborn’s “This is Not the End of the World,” where he says “Whatever you’re feeling right now, there’s a mathematical certainty that someone is feeling that exact thing. This isn’t to say you’re not special—this is to say thank God, you’re not special. “Boomerang Valentine” by Andrea Gibson also really hits me–”When it comes to love, the only thing I’m certain of is that you are the very best thing that has ever happened to you.” As a person who was deeply impacted by having an NMOSD diagnosis at the age of six, I’ve had plenty of practice feeling alone and unlovable—these poems helped carry me through those periods of my life. Of course, I’m not alone in this—there’s a wide community of people right here who get it. And of course, I need to love myself—who’s going to have my back better than me? Who do I spend more time with than myself? I have to learn to treat her well, to give her grace—she’s me!

What is something you’re really good at outside of work?

I’m a baker, that’s one thing! Whenever I have guests over, there’s always a plate of cupcakes—usually pumpkin chocolate chip. By the time my guests are gone, so are all my cupcakes. I’m great at planning road trips—I can find any and every odd little roadside attraction, and I have a bucket list of over a thousand things I’d like to do or see that I can pull from.

You’re currently getting your Master’s Degree in Fine Arts. How has it been working at SRNA while also being a graduate student?

It’s honestly worked pretty well for me—I am learning a great deal during my time at college that I can apply pretty directly to my work with SRNA. I hope to run a creative writing course for those with rare neuroimmune disorders soon—so stay posted and sign up for our emails if you haven’t already if you’re interested!

Even during finals week, I’ve been able to still get the work done—that’s due quite a lot to SRNA’s amazing flexibility, which has also helped me not stress when I have to take my treatment for my NMOSD and need a couple days to recuperate. It helps to have a team that understands my condition and gives me extra grace when I’m recovering. By having remote work, regardless of how many spoons I wake up with, I can manage to meet my deadlines.

What’s something that has made you smile recently?

I’m engaged! I really am ecstatic, to say the least. As anyone in the community knows, romantic relationships can be very difficult with these disorders. I’ve grown up incredibly worried that my condition would prevent me from having romantic relationships because in a way, I thought “Who would want to take this on?” I have my answer—Caitlyn would!

I lucked out—I never could’ve imagined having a person to go through these hospitalizations with me, let alone come home with me afterwards and take care of me, even when I’m too weak to really get up my stairs and she has to help carry me up. I do want to say, particularly to any other kids who grew up with one of these conditions, don’t give up hope. I know it can look scary, and you might feel like you’re bringing a “bad thing” into a partnership. But honestly, if someone really loves you, they will look past that. They will take on the challenge of it and partner with you through it. Yes, that somebody is a bit rarer to find—it may take time, there may be heartbreak along the way. When I disclosed my condition to the first person I went on a date with, he said “So you aren’t going to live very long,” even when explained again and again that I was pretty stable, all things considered. What I’m asking is that you keep your head up—there’s not just one Caitlyn in the world. I do believe in love—I believe now that there is someone for everyone. But I do understand that feeling of hopelessness when it just hasn’t happened yet.

What energizes you?

To be perhaps too literal, coffee! I love coffee, it keeps me going, and trying new local coffee shops really keeps my spirits high. To be less literal, time with friends. Whether it’s friends online, or friends in person, community creates energy for me. I’ve also really loved my time at college—because of my proximity to people, if I’m ever feeling low, I can send a text into the group chat and everyone gathers up at the local gas station. We drink ICEEs until we’ve got brain freeze and we talk about our week. Having people who are just so willing to hang out at any given point means I always have a soft place to land.

What does a “typical day” of work look like for you?

I keep a calendar and that really helps me to break up my time between work and grad school! I do big work blocks, a few hours in the morning and a few at night, and I work best when I’m doing one project at a time from start to finish. Reading through old articles to incorporate into the quarterly SRNA magazine, thinking up and producing community programs like the Back-To-School kit and the upcoming College Survival Guide, editing and reviewing whatever needs a writer’s eye, and producing original writing and media, such as blog posts and podcast episodes based on the needs I had growing up with a rare neuroimmune disorder are all pretty routine parts of the job.