I'll always be an epileptic. I don't feel as much like one anymore, because I've gone so long without a major event. I know there is something fragile about me, like a fault line that divides my brain in the wrong place. Like California, the earthquake could come at any moment. But I actually go hours without thinking about it. For years, I couldn't have said that. I was on the Epilepsy Foundation website yesterday, looking into anti-seizure medications. I read a couple of the comments and felt humbled. My epilepsy doesn't compare to the people trying to keep their cocktails of drugs straight. I can't imagine anyone dying of SUDEP. I felt so lucky. I felt like my condition was meaningless. I talked to my friend and someday co-author Dr. Erin Castelloe about it the next day, telling her how silly I felt for thinking I could compare myself to these people and their experiences. "But you were them." She's right. I bounced around between meds and combinations of meds for about four years before I found one I could tolerate. SUDEP was a real possibility for me, still is, because my oxygen level goes to zero when my brain electrocutes me--I'm one of those who could actually die from a seizure. For many long years, a month with only ten seizures was a really great month. That was Kate Recore. That will always be me. I've just crossed a bridge to a quieter, gentler place in my life. I haven't forgotten the terror, the feeling of 'oh no I'm going now' and the silent scream I try to force out, wondering if I'm actually screaming and just can't hear myself in the suddenly silent room, or if the sound is simply unable to escape. I know it's the second, because people have seen me and told me I don't make any noise other than gurgling and struggling for breath, but I still wonder when it's happening. I still try to scream from beyond to beg for the pounding of my mind and body to stop. I can conjure memories of that horror at any moment, even though my seizures now lie dormant.
I went to an epilepsy conference a couple of years ago. I was in a break-out session and shared that I hadn't had a seizure for seven years.
"Why are you here?" a woman asked, with great sincerity.
Because I'll always be an epileptic.
My memory is horrible, but not completely lost. I'll always be one of the people who devote a great deal of our subconscious to the possibility of a seizure coming at any moment. I'm one. We are many. We are here for each other. We can survive, and thrive. Let's share our victories and our crushing defeats. Together, we will win.
During the year I spent waiting for a diagnosis, I had hundreds of seizures. They riddled my memory with holes that turned into gaps, then canyons. I still remember very little about my life before seizures. Instead of searching out friends for support, I avoided them. I dreaded the awkwardness of trying to remember "That time when..." I never made eye contact with people when I was out, fearful they might know me, without me knowing them. I recognized no one, in a city where I'd lived all my life. I faked my way through conversations every day, pretending to know what people were talking about. Epilepsy forced me to reinvent myself, without knowing myself. It sounds exciting, starting with a blank canvas and becoming whoever you really want to be. But the canvas wasn't blank--it was black. Things I should remember, a childhood, a college degree, family vacations--all smeared across each other with only fragments discernable here and there. Memories sprinkled around, ranked with no rhyme or reason, no value, no level of importance. To really begin again, I had to go somewhere new, and leave everything I expected to know behind. I accidentally moved to Colorado. If you ask anyone who lives in Aspen why they moved there, they will tell you they went to visit and never left. I went to visit my aunt and uncle, then stayed over six years. Epileptics dream of places where they never have to turn a key in an ignition. I didn't own a car for three years in Aspen, because I could walk anywhere I wanted to go. Friendly people, the best food on the planet, the most beautiful 360 view you could ever wake up to. For a price, of course. With median home price at $1,000,000 when I lived there, I knew I couldn't stay forever if I wanted a family. But I stayed long enough to become the new person I needed to be. I strongly believe in uprooting when you're in poisoned soil. If I had stayed where I lived before seizures, my life would've been spent trying to remember the person I once was. Leaving, a new view out my window, a new grocery store, strangers that I knew for certain were strangers and not someone I should recognize, released me from a prison with only solitary confinement. My journey to Colorado led to my husband, my son, and California. Hopefully I'll eventually get back to my Rocky Mountains, but the Pacific will do for now. If you need to restart your life, ask yourself one question: Where should I go? Don't fear leaving your life if it's toxic. To live without what you know is to truly give yourself another chance. Be bold. Be proactive. Be who you are meant to be.