A major part of my experience with epilepsy is coming to terms with the diversity of experience with it, because I think I almost felt like some kind of imposter with the infrequency of my episodes. But finding solidarity via the foundation really, really welcomed me in. It made me feel as though I wanted to share my experience.

In 2015, I was on tour on the East Coast from Brooklyn to Chicago and back, and unfortunately, I got a flu-like virus and one morning just fell down, hit my head in the bathroom, and was taken to the ER. They misdiagnosed me with a blood clot in my lungs and gave me this blood thinner with a super long half-life. And because of how I’d hit my head, I started to suffer a cerebral hemorrhage, forcing them to perform an emergency craniotomy. They took out a piece of my skull about this big, successfully saved my life, but that was only needed because of their own misdiagnosis. And then about a year after that, so early 2016, I started suffering from seizures and struggling with them ever since.

So music was really integral in finding this community. I had a seizure during a gig in January 2019, and my guitar got, sadly, sandwiched between my body and a table after the seizure, and it broke into a bunch of pieces. Luckily, after going to a bunch of repair people, I finally got it repaired, posted about this on Instagram, and Carlos saw this and reached out to me and said, “Would you come be a part of this community?” And I was thrilled to, and I think without that experience with the guitar, I’m not sure the connection would have been made.

Meeting Carlos from the Epilepsy Foundation has really been an opportunity to just try to become more of a vocal proponent of epilepsy awareness. I think just finding solidarity with a community was such an eye-opener and made me want to make epilepsy more a part of my public identity too.

My name is Matt Jaffe and I have epilepsy.