Sean Baumstark shares how living with Friedreich’s ataxia, along with his work as a disability advocate and cohost of the Two Disabled Dudes podcast, inspired the creation of the cruise, Rare at Sea. It is designed to give people with rare diseases space to connect and feel understood without pressure or judgment. Read his column, No Good Excuse.
Transcript
I’m Sean Baumstark. I live in Sacramento, California. I was diagnosed with Friedrich’s ataxia when I was 25. I’m 44 now, so I feel like I’ve lived a pretty good life, despite FA.
I help cohost and produce the Two Disabled Dudes Podcast with another FA friend of mine, Kyle Bryant.
Rare at Sea was birthed a couple of years ago with a couple of friends and I. In fact, Kyle and I have talked about something like this for years.
We all realize the fun part about conferences and seminars is the fun stuff, right? At the end of the day, everybody goes and has a meal or just hangs out in the lobby of the hotel or the convention center, and we just connect.
So we’ve always wanted to put something together that allows more emphasis on that just hanging out piece. So we decided on the cruise idea.
I’ve been cruising personally for many, many years and I love it. I cruise often with the wheelchair, so I feel like they’re very accessible.
So we chose Rare Disease Day as the starting point. Once we had our date in mind, it was just a matter of let’s talk to a few of our friends and see if this is even something they would want to do. We got four or five, six people saying, “Love the idea. Let’s do it.” We just started putting it together.
What I love about the cruise idea, too, is that it gives everybody a little bit of freedom. So you don’t always have to stay with each other. You know, somebody can roll off and get lunch by themselves or, you know, go hang out with their friends while their parents or other adults or other people go do their thing.
You know, it’s different if you plan a trip to Paris, then you all stay together. Y’all worry about Uber and what time the museum opens and closes. And what time’s our dinner reservation? And I love cruises because there’s very little of all of that pressure.
There’s something powerful when you meet other people that get you, right? That understand some of what you’re up against. Maybe not everything. Disease looks different for all of us, even though some of us might have the same diagnosis, it shows up differently. It impacts the family differently, life differently.
So we wanted to create a space for all walks of life in the rare disease space could come together, make new friends, and really feel the freedom to just enjoy a few days of sunshine and activity without the pressure of, “Why is everybody looking at me funny?” Or, you know, “If I had to go to the bathroom a lot, are people going to think differently of me?” Or, “If I need this breathing machine, is that going to be weird?”
So we have over 60 people showing up on this particular cruise. And although what I’m up against is very different than most of them, I get it. And they get me.
And just because I walk funny or talk funny or, you know, need a little extra here and there, isn’t gonna cause me to hesitate or lose some confidence because I feel like everybody’s staring at me.
At the very least, I’m going to have a little tribe that understands me and gets what I’m up against. I feel like we’re onto something that might stick around for a little while.
