Epilepsy Camp, Part I

I pulled into what looked to be the main parking lot, nearest to the admissions building, which sported a carved wooden sign, “YMCA of the Rockies” with the subheading, “altitude 8010 ft”. Breathing heavily from the lack of oxygen, I hoisted my gym bag and backpack from my car and trekked up to the front desk.

“Hi”, deep breath, “I’m with the”, deep breath, “Epilepsy”, deep breath, “Foundation”. Deep breath, “where are they?”

I was given a detail-less map with Deer Ridge Lodge circled, though I still had no idea how to get there. My bags were heavy and part of me was wondering why I’d decided to stay up at the camp for a week with eighty kids and a bunch of adults whom I didn’t know. I paused on the sidewalk, looking ahead, then down at my map, then back up at the main building again when I saw four women walking toward me in matching blue t-shirts that read, “Jason Fleishman Camp”, surrounded by a collage of inspirational words, like “adventure”, “friendship” and “seizures”. “Hi, excuse me, are you guys with the Epilepsy Foundation camp?” I asked, breathless but hopeful.

I spent the next week with the most amazing group of people who not only opened my heart, but opened my eyes. The Epilepsy Foundation of Colorado puts on the Jason Fleishman Camp every year for kids who have epilepsy. Growing up, I never knew anyone else who had seizures; I was the only one. My friends were all, and are all, amazing and understanding and supportive, but still they can’t really know what it’s like to live with epilepsy. This camp is a whole different world. Kids who feel left out of activities are suddenly horseback riding and zipline-ing over rivers surrounded by mountains; people know that an absence seizure is not daydreaming; having a tonic-clonic (grand mal) seizure isn’t embarrassing; and no one is going to tease them for being different since they aren’t.

The campers ranged from no seizures in two years to two seizures yesterday; some have tonic-clonic seizures, some complex partial, some absence and others multiple kinds. One activity that they did was called, “Ask the Doc”. The campers broke up into three sessions based on age (one group 10-12 and two groups 13-17) and sat in a circle on the floor and had the chance to ask a doctor and a couple nurses any questions they had about seizures and epilepsy. I sat in on the younger kids’ session. It reminded me of questions I had when I was their age. My heart went out to them, their small heads full of big questions and big fears about their little bodies. They asked if you can die from seizures, the answer to which was yes. They asked about emergency meds, administered if a seizure lasts longer than five minutes. They asked about pharmaceutical and surgical treatment options. They asked about seizure dogs - how they work, what they do, how fluffy they are and where they can get one. I thought it was a great idea to give them this opportunity to ask the questions that they’re really thinking and that they don’t always want to ask in front of their parents because they don’t want to freak their parents out more than they already are. I remember that. I still feel that way. We love our families and like anyone, we want to protect them, so sometimes we filter what we say to them; we don’t let them know everything we want to know because we don’t want to scare them. We can see how hard it is for a family to have an epileptic kid and we don’t want to burden them more than we have to. That’s why it’s so important to give these kids the opportunity to be in a place where they can ask anything.