2015 Colorado Gives Day

Erica Egge, Memories

I remember it clearly. My little sister, Greta, and I were sitting at a little white plastic table in our bedroom at the cabin, drawing pictures in colors from Crayola's big crayon box, which spans the entirety of the light spectrum. Suddenly, my right arm got a funny feeling in it and started to move on its own. It started on the table and swept side to side, pushing all of the crayons and sheets of recycled paper onto the floor. It continued for about fifteen seconds, then stopped. We looked at it, stunned, and after a beat Greta bounced up and down, smiling and saying, "do it again, Erica!". I then looked at my arm, swatted it with my other hand, and said, "do it again, arm! Do it again!". My arm didn't oblige that day, but it would another day. We picked up our drawings and the crayons, which had rolled down the uneven floor to rest under the radiator, and continued our activity until it was time for dinner. I remember thinking it was funny while it happened and while it amused my sister, but as the hands on the clock moved, the sun began to set, and the house smelled of dinner, my amusement turned to curiosity, to confusion, to anxiety, to fear. What happened to me? I know that's not right, but I have no idea what it is. And I'm scared. Over the next year, until I was diagnosed, and even a little while after, I cried every time I had a seizure. For a six year old, going from hospital to hospital but still not knowing why my arm was shaking on its own was terrifying. I was terrified.

I don't say this to get sympathy. The object of telling this is simply to begin my story. Living with undiagnosed epilepsy is a scary thing, so when you finally do learn what's happening, being diagnosed with epilepsy is relieving. From that day on, epilepsy becomes part of who you are. It will shape you and your outlook on life in a way you couldn't have imagined. You're more aware of your body and your schedule. You're cognizant of your diet and your lifestyle. But mostly, you're much more aware and sensitive to other people with disabilities. Comments about retards and diabetes and AIDS suddenly aren't that funny. Jokes about someone's dancing making them look like they're having a seizure don't make you laugh anymore. It might even make you nauseous.

The unknown is composed of anxiety and trust. Yesterday, I scheduled an appointment for a consultation and extensive testing to find where exactly my seizures originate so that it can be taken out while I lay awake on a table. I don't know how long I'll be there. I don't know if I'll have the surgery during that visit or if I'll be coming back a week later. Two weeks later. I don't know how long the recovery will be or what it's going to entail. I don't know how long I should plan on leasing my apartment in Denver while I stay with my parents in Minnesota, an hour away from Mayo. Or maybe it'll turn out that I'm not a candidate for surgery. That would break my heart. My unknown future is filled with unsolvable variables that make me anxious beyond belief, but it's full to the brim with trust. Trust that this surgery will be worth every ounce of worry and then some. It's still scary, but every part of my future that is given a diagnosis (the consultation will be December, 23rd; recovery will be at least six weeks; a friend of a friend wants to lease my apartment) is a relief.

To see Erica's entire blog, visit http://livinginabrainstorm.blogspot.com/

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