The Longest Day

I was watching a show the other day about the training of special forces for various branches of the military. One episode featured a final exam called The Longest Day. It began with paddling a rubber raft through crashing waves, carrying it through the trees, completing a mission and walking the miles back through tear gas without masks. Somehow that sounds worse to me than brain surgery, but maybe it's because I know I can make it through it.

This day last year was my Longest Day. It was the scariest, most painful day of my life and I know I'll never forget it as long as I live. Right about now, I was finishing up my "stim test", where each electrode on my brain was reverse stimulated in turn to see what would happen. The doctors would press a button and my hand would jerk, or my eyes would move or my tongue would stick to the roof of my mouth and I couldn't breathe. Each time I heard one call a set of numbers to the other, I would wait for the shock and pray to God that nothing would happen. They were looking for my motor strip and I wanted so badly for it not to be under my seizure origin point, what they had come to call "the birthmark". I sat in my hospital bed, clutching the small, stuffed dog that my parents had gotten me in the Mayo Clinic gift shop. I was so scared. I focused on the sign my sister had made me that hung in my hospital room: We Love Our Erica. I traced the patterns with my eyes, drank in the colors and tried to stay calm.

In an hour and a half, my surgeon would come in and tell me that the birthmark was not on my motor strip, but right up against it. I was a candidate. I exhaled with my whole body, my whole spirit. I was a candidate. He told me that I could have the surgery, but there was a chance I would lose a good amount of sensation in my hand - I would have a hard time knowing how much pressure was needed to hold a fork, being able to recognize the shape of my wallet in my purse by touch. There was a chance I would lose some speech, some short term memory, though it wasn't very likely. "Do you still want to do it?" I paused for only a moment, because what stood firmly in my mind was that nothing had gone wrong yet, so there was no way it would start now. I lifted my right hand, covered in white tape to hold the IV in place, to the plastic table over my lap and signed the consent form.

Not until about 4pm was I finally brought down to the operating room. I remember a cleaning woman in the elevator as I was rolled in by a nurse. I said, "Hi, how are you?" as cheerily as I could. She looked startled but then smiled. I tried to be brave in the pre-op room among dozens of other patients in blue and white polkadotted smocks, lying in rough, white sheets on a plastic bed. It was easier the first time, when I didn't know what would happen, when I had no idea what I was getting myself into. Somehow, this time it was terrifying. A couple nice doctors, nurses and techs stopped by to explain a few last details, but I didn't care about the information, I just wanted their smiles and calming voices. A few layed hands on my shoulder or foot, and just a simple touch like that brought a sliver of peace.

The OR was brighter, more sterile, more ominous and more lonely than I'd remembered. Cindy wasn't there this time; she'd placed electrodes on my scalp for my monitoring the day after Thanksgiving and the grid on my brain during my first surgery, but since they were removing it, a much less delicate process, she was somewhere else. I didn't know anyone there. It was like the first day of kindergarten: terrifying and, as yet, the biggest day of my life. One man in blue scrubs came closer and smiled through his mask; he said Cindy had told him to take good care of me. I relaxed a little as he held my left hand and someone else took my right while a clear mask was lowered over my face.

I try to forget what happened when I woke up in post-op recovery. I try to block out the pain that was so terrible I screamed; the way I writhed on the bed, the bright light that stared me down when the doctors made me open my eyes, their hushed voices when I sobbed that my pain was a twelve and begged them to help me. That scene is burned into me. It felt like an eternity as the hysterical crying I realized was my own melted to a pleading whimper. This hadn't happened after my first surgery. Couldn't anyone help me? What went wrong?

Last night it came to me like it sometimes does. A wave of remembered trauma, pain, relief and gratitude smashed over me, its full force against my mind. Wet tears slid down my face and as my rock held me in his arms, they turned to sobs that wracked my body and tore sounds from my throat despite my efforts to stifle them. I could see the wet collecting on the collar of John's blue shirt, turning it dark and shiny. I began to calm down at the insistence of my nose that it needed a tissue. I went through three before I could breathe steadily again. I clutched John's back and laid my head on his chest. "It's okay, baby, it's gonna be okay. You've been through a lot." I have.

Thank you to everyone; all of you who have been here for me, with me. Thank you, God, for the blessings you've given me. Thank you, John, for listening, understanding and supporting me every day. Thank you, mom and dad, for holding my hands; sitting quietly when every little noise hurt; making up stories when I was scared; spoon-feeding me; forcing me to sit up, stand and walk despite my dirty looks and petulance; fixing oatmeal and fruit every morning; re-teaching me how to knit so I could regain the function of my hand; making me take naps even when I didn't want to; taking me on slow walks around the block in freezing cold January weather; but most of all, teaching me how to live the kind of life that makes me happy and fulfilled.

John asked me what I want to do tonight to commemorate my anniversary. I haven't decided yet whether I want to go out and celebrate or stay in and remember. Either way, I'll remain, as always, eternally grateful.

A Warm Day in January

The park is quiet yet active at 1pm on a Thursday. Who is here but the unemployed, the retired and the stay at home parents with small children in strollers, on the jungle gym or waddling around like small penguins carrying juice boxes? Two college-aged boys tire of their game of hackey sack and stroll away, laughing in long shorts and brightly colored t-shirts. A woman stretches after a run; a man does push-ups, an ipod strapped to one of his spread out arms; two people play frisbee on the other end of the park, a small dog running between them, hoping one will drop it so he can come to the rescue. The breeze picks up as a patch of clouds pass between me and the sun, chilling my bare arms, and I move to the next bench down, unobstructed by the winding, leafless trees - the only reminder that it is, in fact, January.

I'm taking the day off of job hunting, spending it instead on writing, a long walk and coffee with a friend. The high today is 61 degrees and, as usual, it's sunny and gorgeous. The purple sweater I'd worn has been relegated to my backpack and the cuffs of my jeans are rolled up, showing off my white calves and the black and hot pink running shoes I got from my sister; they don't match my grey tank top with the lace down the front, but they're comfortable on my feet when I roam the streets and sidewalks of Denver.

As March comes closer, I've started to become nostalgic. I think of the friends I'll miss, the groups I'll need to recreate, the restaurants I realize I've already visited for the last time. Will I go back to the mountains before we leave? I don't know. Will I ever make it to Grand Lake or the Hanging Lakes? Probably not. Will I bother to come back for my five year college reunion in October? I'm not sure. I'm beginning to see that there are many more things I'll miss than I'd thought: happy hour on the outdoor stairway of my apartment building, carrying my blue folding chair with the built-in backpack full of crackers, dips, cherries, a book and a water bottle of white wine to Cheesman Park, where I read and unwound until the sun went down and mosquitoes bit my feet. They have parks in Minnesota, but it's not the same. I did a lot of healing here. When I moved to Colorado on July seventh, 2009, I was an empty shell, conditioned to be unamused and perpetually skeptical. I came knowing one thing: I needed emotional healing. I needed to reconnect with the happiness, strength and confidence I'd lost. Colorado has been witness to my transformation and because of that, it will always be in my heart.

But now, the universe has a new plan for me.

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.

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.

Six Reminders

Just above a small mole, a freckle really, on the back of my right hand, there is a circle - darker than the sun-kissed tan of my skin with a white dot in the middle. It sits atop a blue vein that carries blood to and from the fingers that type my thoughts, nourishing them, feeding them the oxygen they need to flutter over my keyboard before carrying their leftovers, all they didn’t use, to be pumped back through my heart longing for caffeine and my lungs still thick with mucus after four days of bed rest and antibiotics. The scar watches me from its post, telling me that the landscape of the back of my hand that I know so well has been changed forever. I wiggle my fingers and watch it move side to side with the tendons below it. So intricate the human hand is; so delicate. I watch the scar, and I accept it.

There are times when I wish it would just disappear already, leave me be, give me back my body. There are times when I mourn the unblemished skin that used to stretch over everything, dark olive covering my hands, my arms, my legs, my back, my chest, my stomach, my face. Still I go back and forth, oscillating between peace and frustration, but as the rollercoaster slows, I find myself moving closer and closer to acceptance.

There are four scars on my hands, one on my forehead and one on my scalp, but it’s the small dot on the back of my right hand that I see the most. It is a constant reminder of what I did; what I went through. I look at that scar, left by the IV port that stayed in my hand for too long, becoming stiff, dry and painful before finally being moved to its left partner. I think of my life and how different it is; how different I am. It is unsightly, yes, but as I get farther away from the surgeries that bore it, this scar reminds me of my strength, my will. The small silver dots on the undersides of each wrist twice fed me anesthesia as the vice that kept me still carved the scar on my forehead and the scalpel sliced the shaved skin where my hair once was, exposing my skull to the saw that removed it and the plates that replaced it, leaving a red-tinged dent to span the length of my head. Six scars in total. Six defacements that left me a new person, that gave me a new life.

I stand in the bathroom every night, toothpaste burning my tongue as I brush my teeth, and I stare at the dent on my forehead. I remember it as a scab, a burnt sienna covering to a thumbprint-sized relief an inch and a half above my eyebrows. Today it looks like no more than a short wrinkle; the puckered scar buried below new tissue like a birthday gift hidden under brightly colored paper thin as onion skin.

Back and forth I push the toothbrush and look through the mirror at John standing behind me, light blue toothpaste showing between his lips, threatening to drip onto the back of my t-shirt if he doesn’t spit soon. I can’t help but smile as I watch him and think to myself that the scars I wear helped us find each other. The best decisions of my life intertwined.

Tearful Edits

I'm sitting at Starbucks, a grande decaf skim latte burning my tongue, glad for a place beyond my apartment to write and edit. I'm at the surgery section of the book but my eyes keep tearing up as I read what you all wrote me. The well-wishes, prayers and way to go's mean so much that I have to look away to stop myself from crying. It's hard to go back to that place, that hospital room, the pills, the pain, but I see more and more how alone I was not. You were all there with me. The tears I hold back now are those of gratitude that have helped to wash away those of retroactive fear and pain. Thank you. So much. You will never know how much you mean to me.

Guest Post

My guest post on the TalkAboutIt blog: Diagnosed
http://talkaboutitorg.ning.com/profiles/blogs/diagnosed

I Miss You, Mom

The sun has set, the sky is dark, and the day's heat has faded to room temperature. The blinds on my single window are raised, but the drapes are drawn, showing only a little of the railing beyond my door and the concrete of the next building over. I reach over and turn the Fan to Cool, balancing precariously on the tall, kitchen chair as my arm stretches out.

Tomorrow at ten I'm getting my hair cut. It's gotten so long, I can hardly believe it. The scar that used to part my scalp like Moses parted the Red Sea is grown over with dark brown curls that trip over each other, bobbing up and down as I walk. I stood in front of the mirror tonight after I washed my face, a few forgotten droplets rolling down my cheeks. I ran my fingers over and through each ringlet until they looked teased and stood straight out, parallel to the floor. I stared, astonished, and remembered one night a week or two after the surgery, when my uneven hair mirrored the changes within me: half falling past my shoulders like it had for years and half still peach fuzz, new and growing, vulnerable yet protected. Mom sat on my bed as I played with my long hair and lamented it's inevitable loss. "But mom, look, it's so nice and long and pretty," I looked at her, pleading her to appreciate my plight, "it's gonna take forever to grow back."

"Well, let's see," she mused, ever the problem solver. "Hang on, I'll grab a ruler". She crawled to the edge of my bed and bounced off, a creaking sound following her as she walked down the hallway. Moments later, she returned with a ruler like the one I'd used in grade school math to draw straight lines. She held the wooden stick to my head and pulled one lock straight, telling me the measurement before switching to the other side and gently touching my hair without putting pressure on my fragile head. Not even half an inch yet. "Okay, if this is how long your hair has grown since January 24th, it'll take...", she paused, calculating in her head, "about two years."

"Two years??!!" Something shiny and girly sank inside of me.

I thought of that tonight, noticing how seven months can seem so long and so short at the same time. I remembered my mom sitting on my bed and it feels so far away. I saw her leaning on her elbow and looking lovingly at me, the way she did every night, and it made me miss her so much. I miss the time I had with my parents, the luxury of seeing them every day and basking in our love for each other. I miss the warm feeling I get when she hugs me, the assurance that no matter what, everything will be okay.

Today is September first; I'm not going home again until Christmas. I count the months on my fingers, my heart feeling just a little heavier with the passing of index finger, middle finger, ring finger, pinky. Four months. That's so far away. Mom, if you're reading this, I miss you.

Six Months

Mom, dad and my lovely sisters,
Six months ago today I had my last seizure. In many ways the second surgery was scarier than the first and was by far the most painful. Mom and dad were with me, a command central updating the vigils held in Boston and Seattle. This wasn't easy for any of us, and I want to say thank you to you all. Thank you for giving me the strength I needed to get through this and the prayers that made all the difference.
Love you always,
Erica

Dollars Well Deserved

Today was the Strides for Epilepsy 5K walk that the Epilepsy Foundation of CO puts on every year. With the support of all of you, I was able to raise $1,271 for the Foundation's programs and epilepsy research. It means so, so much to me. I am truly touched.

This year I put together a team of me and seven of my close friends and named it after this blog, and together we made the 3.2ish mile walk in a convoluted path around City Park in Denver. The weather was beautiful, all sunshine and not too hot - though by the half-way point I was sweating through my bright green t-shirt. I was very glad that I hadn't forgotten to wear deodorant like I did yesterday...

As usual, I packed too much stuff that we didn't need or use, like a light sweatshirt and sunscreen, but at least we used all the water! (It also helped that I didn't have to carry the backpack myself, but instead gave the heavy purple bag with the sweaty straps to the Boyfriend of the Year.) There were hydration stands giving out bottles of water and Gatorade, which was good because we hadn't thought to bring water for the four-legged ninth member of our team! It took the all but one of us who walked about an hour to complete the trek, and toward the end, as my muscles started to ache and I felt like I was sweating all the way through my running shoes, I decided that every dollar we'd raised was absolutely earned. But then we passed a little girl of maybe three or four who clearly had serious mental development deficiencies, sitting in the back of an SUV with its trunk open and her legs dangling off the edge, crying while her mom looked through a bag for water and snacks. On the back of her mom's shirt was a picture of the girl and the heading, "Team Lily-bug". As I turned my eyes back to the black pavement ahead of me, they started to fill with tears. She was so young. She has so much life ahead of her, but seizures stole so much of that away from her. Throughout the next ten minutes or so, we passed a ton of kids and adults with the same picture on their backs of the smiling girl. I feel like I've been crying too easily at memories of my own seizures and surgeries as well as stories of other people's experiences, the differences between us and the comfort I feel in the things we share. I swallowed my tears, pushing them from my eyes, because I don't know her; I haven't had enough generalized seizures to cause the brain damage that happens too often; I haven't earned the right to cry. It just breaks my heart, though. My boyfriend squeezed my hand as we walked by the girl, and every time we saw t-shirts with, "In memory of", or, "We miss you", or birth and death dates under a smiling picture. My friends separately mentioned to me how surprised they were at how many of those shirts we saw. I was surprised, too. I realized that every dollar we'd raised was deserved; so well deserved.

Delayed Reactions

It’s hitting me now, what I did. The fears and unsurities I felt are finally manifesting themselves. The tears I never cried now run down my cheeks. The chest into which I bury my face catches my sobs. It seems like I fight them every time I tell a memory from the hospital. I don’t know if it’s the memory of the fear and pain inside me or the love around me that overwhelms me now. Maybe both.

Coming Home

The space heater is gone from its spot in the corner; the borrowed walker was given back to our friends; the insurance documents and get well cards that covered the top of the dresser are missing. I sit again on the bed with the yellow striped duvet, but this time my room looks different. Unoccupied. The remnants of my four-month residence in my old bedroom have mostly been cleared out. A few clothes hang in my closet, a travel mug of mine sits next to a bottle of coconut-scented lotion my sister gave me, and the little silver Christmas tree with the usb plug that my mom gave me when I went into the hospital for monitoring the day after Thanksgiving. The coaster I kept my 2am Percocet on the first month home following the surgeries still sits on my nightstand, though on this trip I left the Percocet in Denver. The biggest memorial is the sign hung above the door that reads: "We Love Our Erica" in patterned block letters strung on a piece of orange ribbon by my sister. I remember looking at that sign again and again while the doctor stimulated each electrode on my brain and twitched as I lay in my hospital bed, hoping to God that I would be eligible for the resection in the second surgery that afternoon. That morning it was a lifeline; now it's a memory.

It's nice to be back in my parents' home. I know it's only been three weeks, but I've missed them. We became a cohesive unit when I lived with them, and in my own home in Denver, I'm a leg missing the rest of its tripod. Seeing my mom and dad isn't like re-forming into a tripod, or even like crawling back inside my cocoon, it's like a chance to see how much of what I learned here I'm able to remember.

Recording

The past week or so, I’ve been writing down my memories of the hospital, the surgeries, each one a vignette caught in type like a firefly on fly paper. I sift through the foggy recesses of my mind, drug- and pain-induced clouds concealing the whole picture but letting one memory at a time float to the surface like the answer in a Magic 8 Ball. The scene is revealed to me and suddenly I’m right back there, lying in bed, my thoughts oscillating between the present and the future, fear and excitement.

I want to write, I want to record everything I felt, saw, smelled, touched, pin it down before it fades away, but it’s not easy. I shake the Magic 8 Ball of my mind and a memory floats up in response, and as promised, I can see, feel and smell, but what I find is not always good. So many things there were easier when I didn’t know what was coming. I waltzed blithely (or more likely crawled blindly) through each decision, toward each procedure, knowing nothing about the fear and pain that waited on the other side. That made it easier at the time, but now when I go back, the fear and the pain stick out. I don’t like remembering those parts. When I put myself back there, looking through my same eyes, the strong, courageous heroine I’m proud of now is a scared little girl whose head hurts so much she can hardly move.

It’s hard to remember those things, it really is, but I need to record them. I force myself back there and I write down as much as I can, because even if no one else ever reads it, I want my children to know what their mom did for them. I want them to know the strength inside themselves and believe that they can trust it.