Stories behind Milo&Me: Noa

Meet one of our group chat members Noa & Learn her story!



9/14/20221 min read

Hello! I hope that all is well! My name is Noa, and Milo & Me has been such an incredible resource for me as a young epileptic woman. Before meeting all these kind and welcoming girls, I had not known anyone with epilepsy. Knowing all of them and being part of this fantastic community has made it feel like, as Jonathan Larson wrote in the musical Rent, “being an us, for once, instead of a them.”

Here are my basics: I have Juvenile Myoclonic Epilepsy (JME). Contrary to the name, JME does not only happen to juveniles; it starts when one is a juvenile. Mine began in 2020 (before that, I had had Childhood Absence Epilepsy), and mine is refractory, meaning that it is unable to respond to medications– I am expected to have it for my entire life. The types of seizures I get are tonic-clonic, myoclonic, and absence. Living with this is scary, but my medical team is fantastic, and I am so grateful for everything in my life.

I cannot work now, but I teach English as a Second Language for multiple organizations. I love grammar, linguistics, and poetry. I read and write poetry! When I am not teaching or spending time with friends you can find me drawing or writing poetry or going on long walks.

My favorite band is The Who! I also love The Rolling Stones, Elvis Presley, B.B. King, and T-Bone Walker. And Taylor Swift and so many others that it would take me all day to name them. I listen to all of this music when I am walking and drawing and it has helped me so much through everything. Thank you so much, everybody.

Take care,