First Snow

The snow falls slowly from a white sky, landing gently on leaves, green and yellow, still clinging to their branches, willing the seasons not to change. But the seasons are as inevitable as the circles of the sun and the moon, illustrating the Circle of Life every year in bright blues that turn to yellow and orange that are covered under a blanket of sparkling white that melts to reveal sprouting greens and pinks. The chapters of our lives are marked by revolutions around the sun; even when we can't see it, it's there, shining brilliantly as it holds us together, sustaining life as it has always done.

As I gaze out my window, I watch as trees let their branches sag under the weight of the sky. A breeze nudges the snow, making it gracefully fall to the earth at a small angle. Inside, the heater is on, working in concert with my sweatpants and oversized black fleece to keep me cozy as I sip my tea. I dream of the days as a child that I bundled up in snowpants, a jacket zipped lovingly up to my chin, a home-knit hat and old, thick ski gloves, and ran outside and down the street, my little sister tagging along behind. Winters passed in a blur of snowballs, snow angels, sleds and bowls of snow drizzled with hot maple syrup. Towers of white covered the ground for months, growing and waning with the world but always present.

I watch the sparkling flakes begin to fall in ernest, sadly knowing that every last one will melt by noon tomorrow under the unforgiving Colorado sun.

A Watched Pot

They say a watched pot never boils. As I watch myself growing back together, so often I feel as though I see no movement at all. Two evenings in a row, I lay on my red couch, the pillows embroidered with gold and in need of restuffing. I stare at the white wall opposite and try to stay as still as possible; every time I move, sharp daggers of pain shoot through my head. I feel trapped and helpless, completely dependent on the hands that bring me food, water and the remote control. My conscience eats at me, my useless form unable to contribute to the daily tasks of cooking and cleaning.

A pint glass with a bar logo sits on the coffee table next to me, the last drops of water sliding down the sides to pool at the bottom. John asks me if I'd like a refill, but when I turn to hand it to him, a bolt of pain pierces me and I grasp the left side of my head. My fingers intertwine themselves with the dark curls of my hair and I gently pull, thinking that maybe if I can just lift away my scalp a little, there will be more room for my skull, my brain, to heal and it won't hurt anymore.

I close my eyes and lie back down, a pillow supporting my neck as I pull a dark gray knit blanket over my legs, taking care to cover my cold feet. When will this end? I think to myself. I thought I was done with these. I still take Advil before a long walk or pilates class and I avoid activities that would jostle my brain in its fragile shell, but unexplained headaches that come on strong with no warning? I recount the past days, hoping to find a catalyst, anything out of the ordinary, but I come up empty. What changed? I don't know. When will it be over? I don't know.

Puppies!

Everyday Health TV has a series about people who have overcome adversity and helped others to live fuller, healthier lives. Tomorrow (Saturday), local ABC affiliates, the latest episode will air about a boy with epilepsy meeting his seizure dog for the first time.

Have you ever worked with a seizure-sensing dog before? I've never seen one, but would love to. If you want to watch online, you can check it out at http://www.everydayhealth.com/tv.

Enjoy!

Embarrassed

This is embarrassing. I just went on Amazon to replace a friend’s pizza peal that I broke while house sitting. At the check out, there was an offer for a $40 gift certificate if you sign up for an Amazon Visa. I have a Banana Republic Visa that I want to cancel since I don’t use their rewards anymore, and figured I could replace it with an Amazon one. Apparently not. I began to fill out the information on myself: name, birthday, social security number, phone number, but then I got to the employment section. Income: $0. Employer: none. Type of employment: unemployed. Work phone number: I entered in my cell again. I have impeccable credit - no debt, no late payments, nothing - but instead of the “You’ve been approved!” I expected, a message came up saying that I haven’t been immediately accepted; they need to keep looking. They’ll get back to me. Unless they deem me a liability. A liability? This is humiliating.

I’ve been through a lot in the past year, and it’s taught me about myself: who I am, the strength and courage inside me, what I believe in, what’s important to me. But staring at the online form, I realized what I would have to enter. It never used to bother me that I didn’t have a job, because I was making a difference - for myself and for others. For the first time in years, I felt like I was doing something that mattered. I wasn’t selling phones, I was making a contribution to the world. So when did that turn into a bad thing? Why do I feel ashamed when I say that I’m unemployed? Why does it make me feel so useless? Worthless? What changed?

Yesterday I attended an online epilepsy blogger summit. It was interesting and informative and I felt like I belonged to a group that meant something; that made a difference. I felt my worth to the world. Yet it took only twenty one hours to forget. I woke up to a new day and the oscillations of life caught me on their down-stroke. A simple credit card application focused me on the superficial - the hard facts that sit black and white on the surface. They show no color, no story, but those pull-down multiple choice boxes made me feel worthless and embarrassed.

Identity Crisis

I've been seizure-free for almost nine months now. My hand sits quietly until I call it to action, and even as it moves, it follows directions. Not once since the afternoon of January 24th has it taken matters into its own hand, so to say. Not once has lightening struck my mind, leaving me a passenger in my own body. Finally, finally, I am master and commander of myself. I don't stagger around the city with double vision, waiting for nausea to pass before it's time to take my next dose of the epilepsy medications that leave me sick. I don't worry about making sure the coffee I hold is in my left hand, because I don't worry about dropping it with no notice, latte spilling up and over the edge of a cardboard cup as it hits the ground in slow motion like a TV commercial selling paper towels.

But if I don't worry about having a seizure, what do I do instead? A silly question, I know, and I sound like the millionaire lamenting her lack of liquidity, but it's something I think about. For most of my life, epilepsy has been part of who I am and has shaped me into the person who sits at her computer day after day, writing, blogging, tweeting, trying to figure out where she fits in the world. My seizures set me apart in a way that made me look at the world in a different way; I see the people who need help, the people who are made fun of for things they didn't choose, the people who are searching desperately for hope to hold onto. I see them because they are like me. No, were like me. I grew up as part of a group; a group that none of us meant to find, but did, and were bound together by electricity, but now I've lost the spark. Where do I belong now? Who am I when part of my identity was taken out with a scalpel? I'm grateful beyond words for the gift of this seizure-free life I was given on that cold, January day, but I feel like something's missing. Do I still call myself epileptic? Would it make me a fraud to say that I am? It's not the best group to be in, but it's a group, nonetheless, and one in which I made a place for myself. So who am I now? Where do I belong? How can I say "I understand" when my empathy emerges only from my memories?

Happy Anniversary

I imagine October 3rd of 1981 to be a warm day for the season, especially in Minnesota. I see my mom getting dressed in a white gown with long sleeves and lace covering her clavical. I watch as she affixes a short vail to her head, her sisters around her, adjusting the tulle like ladies in waiting to the day's royalty. I see my sisters in maroon velvet, flower crowns on their heads - one a grade-schooler, one a newly minted teenager. Hair done, they find dad in the chapel at Macalester College, where he had taught an economics class the day before. He poses for a picture in a black tux and bow tie, one arm around each of his daughters, a corsage of red rose flanked by baby's breath pinned to his chest. I see him as excited and so increadibly happy, with just a touch of nerves.

At some point, everyone takes their places and as the music begins, my sisters walk down the aisle, followed by my mom's sisters. The music changes and the whole chapel rises, turning to watch my mom, radiant, float toward the alter. I don't imagine her crying, but I'm sure my dad got a little misty.

My favorite picture of my parents was taken as they walked out of the chapel, newlyweds with an arm around eachother's waists, smiling and laughing, their life together stretching ahead of them, an open road paved with kindness and promise.

More than once over the years, my dad has told me, "Erica, don't look for what your mom and I have, cause you're not gonna find it." Thirty years after that warm, October day that started with a dress and ended with a blue grass band playing over a back yard pig roast, their happily ever after continues on. Life is never easy, but they've taught me that with the right partner, you can do anything.

Happy anniversary, mom and dad.

ps- John, thank you for being my partner. I'm so happy to know that I've found It, too. I love you.

Help Out the Kids!

The Epilepsy Foundation of Colorado has entered the Albertson's Community Partners Challenge to win a $7,500 grant for their Jason Fleishman Summer Camp. The money will go toward scholarships for kids with epilepsy who can't afford to go. This past summer, I went up to the YMCA at Estes Park for a week to help out at camp. It was amazing. Should I ever get a job, I'd like to save up vacation days to go again. The kids have all different kinds of seizures, varying in severity and frequency, and range from very high functioning to needing a little help. All of them are ages 10-17 and are brave, strong people who deal every day with more than kids should. A lot of them have trouble fitting in at school, with their friends, with a lot of people. But not at camp. I sat with them making friendship bracelets, colorful knots of embroidery thread taped to our knees, and listened to them talk. Over and over, even from the older boys - who are not generally known for sharing feelings - that the Jason Fleishman Camp is the only place where they feel completely comfortable and accepted. The thing that makes them different is suddenly the thing that makes them fit in.

So, from October 1st through 15th, you can help these kids by going to www.albertsonscpchallenge.com and voting. All you need to do it enter your email address, which they will not sell, so you won't get any spam. Enter in EFCO's ID# 0015, and hit Vote. You can vote up to five times a day, but even one helps.

Thank you so, so much.

You can read more about the Jason Fleishman Camp here.