In 2009, I founded The Epilepsy Connection — a small nonprofit built around exactly what I’d needed for years and hadn’t been able to find: real support for people living with a condition that mostly stays invisible until it doesn’t. I ran it for six years before closing it in 2015. That’s the plain version of the story; the fuller one is in Still Walking. What I want to talk about here isn’t the organization’s history. It’s something I learned running it that applies to anyone navigating a serious neurological condition, whether or not they ever start a nonprofit: community does something for you that nothing else can, and being in service to other people going through it gives you something back that’s harder to name.
What Community Does That Nothing Else Can
There’s a specific kind of exhaustion that comes with an invisible condition — the constant, low-grade work of managing how much to explain, how much to downplay, how to answer “are you okay?” in a way that doesn’t derail the conversation. Most of that work disappears the moment you’re in a room with people who don’t need the explanation. You don’t have to describe what a seizure feels like to someone who’s had one. You don’t have to justify why you canceled plans, or translate the particular fatigue of a body that doesn’t cooperate on its own schedule. The performing simply isn’t necessary, and the relief of that is hard to overstate until you’ve felt the absence of it. Family and friends can offer love and patience. They generally can’t offer that specific relief, because it depends on shared experience, not good intentions.
What Service Gave Back
Running that organization also taught me something about purpose that I don’t think I could have learned any other way: that the parts of my life that had cost me the most — the years lost to a body that wouldn’t cooperate, the systems that failed me, the isolation of navigating something most people around me couldn’t fully see — turned out to be the exact things that let me actually help someone else. Suffering doesn’t become meaningful just because you decide it should. But there’s something real that happens when the hardest parts of your own story become the reason you’re able to recognize what someone else is going through, and useful to them because of it.
None of this requires building an organization. The same dynamic shows up on a much smaller scale — answering one person’s question in an online forum, sitting with someone through their first year of a diagnosis you’ve already lived through, simply being the person who says “I know exactly what that’s like” and means it. The organization I built was one version of this. It’s not the only version, and it’s not the bar you need to clear for the principle to apply to you.
That said, I want to be honest about the other side of it: service like that also costs something. Absorbing other people’s pain on top of your own isn’t free, and eventually, mine ran out — which is part of why I closed the organization when I did. Being in service to others is genuinely restorative, but it isn’t a substitute for your own healing, and it isn’t infinite. Both things are true.
If You Don’t Have This Yet
If you’re navigating a serious neurological condition and don’t currently have this kind of community, it’s worth treating the search for it as seriously as you’d treat any other part of managing the condition — not a nice-to-have, but a real piece of the picture. Condition-specific organizations are usually the fastest way in; national epilepsy, MS, Parkinson’s, and similar organizations typically maintain directories of local and virtual support groups, and virtual options have made this dramatically more accessible than it was when I started The Epilepsy Connection in 2009. Online communities can offer real versions of the same relief, though the quality varies widely, and it’s worth being selective rather than settling for the first group you find. Some people need the specificity of a condition-exact group; others find just as much value in broader chronic illness or disability communities. There’s no single right format — only the question of whether, once you’re in the room, the specific relief described above actually shows up. If it doesn’t, that’s useful information, not a sign you did something wrong. Keep looking.
Read the Full Story
This post touches one insight. The full founding story is in “Still Walking.”