I took a week off of my job as a behavior analyst, working with kids with autism (many of whom also have seizures), to go volunteer as an epilepsy camp counselor at Camp Coelho through the Epilepsy Foundation of Northern California. It changed my life.
My own epilepsy
I was diagnosed with epilepsy myself at the age of 14 and my seizures have been well under control for many years. But recently my anxiety and a panic disorder had sprung up, debilitating me in some areas of my life. One area was in presenting over zoom and reading reports aloud to groups of people – I had recent panic attacks at IEP’s that shattered me in ways that are indescribable. Therapy was helping, as was a healthy dose of Prozac, but I still found myself freezing in moments where I used to have total confidence.
I had lost my sense of self (after having covid twice though I’m fully vaccinated, suffering a concussion from a roller-skate fall, and going through a significant medication change that resulted in some intense side effects) and didn’t know what that “self” was supposed to be.
Finding a way back
The opportunity to be an epilepsy camp counselor for a week arose and I jumped on it. I love kids, I love camping, and I needed to find a way to give back to my community. I thought that this could just be it. I had no idea that this was going to change my life.
My group of 15–17-year-old girls asked me to read them a bedtime story. I froze in fear. This was the moment I would break (my fear of public speaking came flashing before my eyes, and in front of a group of teenage girls no less, teenage girls are notoriously terrifying). But I did it for them and I trembled my way through it, and they loved it so much, they continued to request bedtime stories from me night after night. My girls and I bonded quickly after that.
After staying alert through the nights listening to see if any of the girls were having seizures in their sleep and sleeping on the top bunk of a camp bed, I had my first absence seizure in over 2 years. Then I had another one the next day. But I was okay because I was with people who were like me, (a group of neurodivergent “purple people” as one of my campers called us) and I had no panic attacks. I haven’t had a single attack since I returned from that trip. I felt like I could be myself around these humans, and I have been empowered to be myself, whatever that self is, wherever that self is.
Finding my inspiration
I still keep in touch with one of the young women that was one of my campers. She is a strong and independent girl who truly changed my life. At the end of the camp there was a “candlelight ceremony” and this young woman faced her fear and stood up and spoke in front of the whole camp and made a beautiful speech. To say I teared up was an understatement (I bawled my eyes out). We live far apart but through the magic of FaceTime we can chat and text and keep up with each other. She inspired me to be brave and do things even though they terrify you, because it’s so worth it.
This is for you Ellie.
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