Changed

It's amazing how time flies. The dichotomy of a vivid memory: so crisp and so clear it could be yesterday, yet so far away that you hardly recognize the you that appears through the mist of the mind. I think less and less about my surgery these days and I'm grateful I wrote it all down when I realize its ability to leave me, the sands of time running through my fingers into a pile on the ground from which it came. So much has changed from those days, yet somehow I feel the same. Changed. No longer who I used to be, I'm complete. Whole. Erica 2.0.

I made a friend last night who's only beginning her journey. I recognized the fear, anticipation, excitment, anxiety, elation and terror that played across her face in concert, all at once. She's going to have my surgery, our surgery. Anyone who's followed this blog has gone through this surgery with me; I was never alone. Whether it was prayers, good vibes, healing energy or something else, all that you sent me forever altered my life in such an amazing way. Now I pray for her, I send her good mojo and healing energy. I had such an amazing experience and I can't wait for her to have the same, for her to find her new life.

Because You Can

I push my dark curls back with the same grey elastic headband I wore last night and the one before. Not yet long enough for a ponytail, my hair needs some other form of constraint to keep it free of the soapy suds that wash away the layers of the day. I look at myself in the mirror of the well-lit bathroom, towel-drying my face and wiping off mascara residue from under my eyes. Short feathery wisps of down float above my forehead, too short and delicate to be captured. I remember being young and my mom gently brushing them with her fingers, tracing the different directions they grew. Every time I find my reflection, I see how much we look alike: same olive skin, same dark eyes, same slightly crooked face, same love of our family.

Tonight we all gathered, my mom and her four sisters, me and my younger sister, my dad, my aunts' spouses, childhood friends whose own children have long since left childhood; new friends, old friends, work friends, family friends, life friends. We all gathered in the same dimly-lit back room of the restaurant where my aunt was married four years ago. Tonight was again in celebration: a birthday. Her sixty first birthday. No, it's not a multiple of ten, no particular anniversary or precious metal, but the most special birthday so far. Without a cane, she seemed to glide and float across the room with a smile that spread from ear to ear as she greeted and was greeted by every glowing guest.

In time we joined together in a joyful chorus of Happy Birthday and when she stood to give a short speech, I soaked up every word I could. Be grateful for every morning that you wake up. Choose to live. Choose to fight. Face life head on, don't watch it pass you by as you wait to die a little more each day. Thank God, thank the earth, thank the people who love you, thank yourself for the world around you! Move your body because you can. Live every single day because you can. Above all, never forget how lucky and blessed you are.

The Depths Of Human Kindness

My friend Mandy wrote a great post on her blog My Life As Mandy... With Epilepsy today. Her question was, is epilepsy really a blessing in disguise? She said yes. A lot of people told her she was wrong and that epilepsy is a curse, a black spot on the face of life, but I agree with her with every fiber of my soul.

Diagnosed at age seven, I don't remember a time without seizures, tests, doctor visits and handfuls of pills. Sometimes it felt like my life was an exercise in silver linings, but I can honestly say that if I could rewrite it, I wouldn't change a thing. For me, epilepsy has been a blessing; it's taught me more about what it means to be human than anything else I've ever experienced. Epilepsy is part of who I am, it's shaped me into the person I am today.

Having a disorder like epilepsy makes me see the world differently; I'm more aware of and sensitive to the difficulties others face, I'm more attuned to the heartbeat of the earth and I can tell you it's strong. The world is full of people who each have burdens, weights on their shoulders that at times feel unbearable. Some are loud, some are silent. Some are mad, some are scared, some are hopeful. Some endure the bad as a shadow over their life, some spend every day seeking the good in their lot. Some feel cheated, some feel grateful.

I've always had a roof over my head; I've never been hungry; I've never feared for my life; I've never smelled death in the streets. I can't imagine how life must be for so many in our world, the pain and hardships they've experienced. But when I hear of the people who never lose faith, who strive for more, strive for happiness, I am awestruck, I am inspired.

The cross I bear is a pocket charm compared to many, but it is the depths of human kindness that never ceases to amaze me. No matter the size of your burden, no matter the cause or kind, there are people watching and waiting to give you their hand. We are never truly alone. None of us. We are connected by life, energy, spirit; we come from the same beginnings and we go to the same ends. It might not always feel like it, there are times we all feel lonely, misunderstood, even abandoned, but reach out your hand and it will meet the same flesh that covers you, the same blood that runs through your veins. This is what epilepsy has taught me.

Each time I reach inward, I am amazed at the strength I find within myself. Each time I look up, I am amazed by the strength of those around me; their love and support feeds me, sustains me. Maybe I would have figured that out a different way, but in this life, it is my journey with epilepsy that has given me no choice but to search myself and search the world and what I find, every day, every minute, every second, touches my soul. For this, I am eternally grateful.

I once wrote here that my surgery was a perfect storm of Grace. I was wrong. It is my life that continues to be the perfect storm of Grace.

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.

Thomas Jefferson High

Walking into the long, rectangular room of waxy-looking tables, I was greeted with a wave of cold; Room 5 was easily ten degrees colder than the linoleum hallway leading to it. Maybe the absence of hormones in skinny jeans and patterned t-shirts chattering and texting their ways to class had something to do with it.

I saw Marcee from the Epilepsy Foundation of Colorado at the far end directing a man with a projector and liaising with what looked like a teacher. Another girl stood nearby, wearing the slightly unsure look of a teenager wanting to help but not quite sure how. She must be the Youth Council girl. A hug to Marcee, a handshake to the girl, Delany, and I began realigning tables to face our panel, making sure that no one would be blocked by the grey projector cart. A ringing that sounded more like a telephone than a bell floated in from the hallway - our cue. We rearranged a few more chairs just as students began to file into the classroom.

The classes from Period 1 of 5 settled into their seats and Marcee stood up: "Hi, guys. We're here today to talk to you about epilepsy." A middle-aged teacher interrupted with a sharp, "phones away. No electronics." I thought with a smile that in my day, phones seen outside of lockers were confiscated. Not that I had a phone until eleventh grade anyway. A scuffle came from the corner as cells were shoved into backpacks and purses to a soundtrack of muttering. When faces had all surfaced again, Marcee continued, introducing Delany and me before beginning a video on epilepsy awareness made a few months ago by the Youth Council. The ROTC students sat closer to the front, and in the moving light from the pulled-down screen, I watched their faces, polite and attentive, thinking of questions to ask when prompted during Q&A. The lights came on when the Epilepsy Foundation's red flame logo appeared on the screen, causing me to squint while my eyes adjusted. I took a sip from the neutered latte in front of me, lamenting my one year post-surgical moratorium on caffeine. I watched Delany stand and introduce herself, much better prepared than I with a typed up script of her history with epilepsy. I pushed back my blue chair when she sat down and stood to deliver the mini-bio I've given so many times before: I was diagnosed when I was seven; I have simple partial seizures; this is what happens when I have a seizure; I tried a dozen medications, but none of them worked; I had surgery last January; I have a scar that runs in an arc, covering the length of my head; I haven't had a seizure in ten months.

"Does anyone have a question?", Marcee asked. One hand went up. "Yes, you in the black shirt." When his was answered, two more hands came up. Then three. They really were interested; they wanted to learn. Well, even if they didn't, they did a very good job of hiding it. I was touched.

Throughout the five periods, three different kids told us they had epilepsy: two girls in a dance team class whose friends all knew talked openly about their own experiences and one boy a few periods later came up to our table after his class, asking about the Youth Council. A boy who came through at least twice with different classes told us that he'd been at the talk last year and remembered what to do when a woman in his church had a tonic-clonic seizure one Sunday. Smiles crossed my face at these stories; these kids were learning.

It wasn't until 2:45 that I walked through the parking lot with Marcee, my coat buttoned up but my mittons at home. "That was really great." "Yeah, it was."

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!

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.

Stories to Tell

Since I’ve left my love cocoon in Minnesota and moved back to Denver, my formerly solitary life has taken on so much more. My story started out as a narrative but has been woven into a plot of life so much larger than myself. The world moves but I am no longer the center. My stories are no longer mine, but are intricate webs woven into the lives of others.

When I was the axis of my life, I had full discretion over the emotions, the actions and reactions that I wrote to the world, but now that’s changed. My stories are no longer mine, but rather are contributions; sometimes featured, sometimes supporting. I can tell my stories, but not someone else’s. There is so much in me right now, I am so full, so saturated with life, but now I intersect. I write all day, capturing my actions and observations on the page like a butterfly tacked to a display, but these are not colors, sights, sounds, smells, flames that I can share. They are not my stories to tell. So for now, I err toward safety, keeping my writings to share on another day, maybe in the book, maybe not. Life is made up of stories that we weave together on a bright, full loom, each string belonging to one of us, the picture belonging to none.

Talk About It! Blog

Hey everybody, the organization Talk About It! helps raise epilepsy awareness through various celebrities. They just started a blog and I wanted to share it with you! http://talkaboutitorg.ning.com/profiles/blogs/taiblog1

A Big Year

It’s my birthday tomorrow. In twenty nine minutes, to be exact. Twenty five has been a big year. Since I was a kid, I would sit down the night before my birthday and write. I would reflect upon the ups, the downs, the changes and the things that stayed the same. I’ve been wondering how to even begin to tackle that this night, so much has happened. I guess I would say that this year was, overall, a year of love and acceptance. I had my first whole summer since college without a weekend on Bohn Island; I grew closer to friends I hadn’t expected and grew apart from others I never thought I would; I watched my friends get married and heard them talk about children; I even found my own boyfriend and grew to love him, too. I watched as my epilepsy consumed my life, first as my seizures got worse and I had sometimes-debilitating side effects from my pills every day, and then as I decided to have surgery and lived through what that meant. I went from sitting in a Starbucks with an October wind rushing me every time the door opened and reading that brain surgery had an eighty to ninety percent chance of success to three months later, sitting in a plastic chair with foam cushioning across from a neurosurgeon as he told me I had a twenty five percent chance of success and then taking it. God, I feel like all I think about and all I talk about is my surgery, seizures, epilepsy and recovery! Sometimes I get so sick of being inside my own broken-record, but somehow I’m not able to escape it. Yes, the headaches tether my thoughts to my body, but maybe I’m just not able to let it go. I spent three months planning and five more recovering, putting a grand total of almost three quarters of my twenty fifth year centered around my surgeries. I learned so much this year. Being denied the choice to take care of myself, I was forced to let go, give in and depend on other people. I never knew how much trust I was keeping inside me, grasping tightly to it as I elbowed people away. It was when I gave in and fell, dropping my trust until my arms went slack, that I knew I had enough love to catch me before I hit the ground. I learned trust, I learned love, I learned friendship, and I could because of how I learned pain. So yes, it was a big year.

As I rapidly approach midnight, I make two promises to myself: that I remember all of the lessons I learned this year, and that I let myself move on. I can’t be trapped in my limbo forever; I didn’t have surgery so that I could stay and dwell on it for the rest of my life. This year I will remember and I will forget. I will cherish and I will endure. There is so much out there to experience, and now I don’t have any reason to stay behind. I stare through the window to the future and I see that I know nothing about the world and very little about life, but it’s okay, I don’t need to have all of the answers. Tomorrow I’ll only be a day older than today.

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.

Body Over Mind

It's eight thirty and the sun has set, but it's still light. I started my dishwasher before coming outside to enjoy the last bit of gloaming, after which I'll go back in to make spring rolls for dinner. But right now, I'm sitting on the top landing of the outside stairwell in my apartment building, my legs dangling down the first two steps and my computer on my lap. The air would make anything more than a tank top and shorts sweat, but in my gray spaghetti straps and the red shorts with beaded minnows I got for my birthday, I feel great. I feel like the air and I are the same temperature, like we flow in and out of each other without causing more than a light breeze, like I don't know where I end and the world begins. No mosquitoes bother me since they don't have any in Colorado, one thing I don't miss about home. As I take a sip of wine from the glass sitting next to me, warming slightly in the outside air, I reflect on my day.

I went to my first career counseling session today. Of course, I was half an hour late because of horrible traffic and missed the first half of it, but it didn't seem that I missed much since I just stayed after to complete the Strong Interests (or something like that) test. Thirty minutes of multiple choice questions, covering my job interests, my interpersonal skills, what kinds of activities I enjoy and various job environment preferences. A twelve dollar processing fee later, I was on my way. I didn't learn any deep truths about myself, but that wasn't really the point - today was mostly a meet and greet.

I rolled down the windows in my car and blasted angry girl music to drown out my thoughts. It's been four and a half months since my surgeries, but they still permeate my life. I never imagined that I would feel plagued by recovery for this long. Why am I still so tired all of the time? Why do I still get headaches almost every day? When I lie on my couch with a cold pack on my forehead or have to go home early because the Tylenol isn't working, I feel like a let-down. If I'm not letting myself down for failing to accomplish much of anything in a day, I'm letting down my parents for not having a job yet, or my pilates class for not being able to go upside down, or my friends for having to retreat from loud noises, crowded spaces and prolonged conversation. Is it me? Am I just lazy and looking for an excuse? A cop out? Do I just need to be given special treatment and attention? Those are the thoughts that make me hate myself. The voice inside of me that answers yes to each one makes me feel worse and worse about myself. The stubborn streak comes back and yells at me that I'm not trying hard enough. Body be damned, I clearly just don't have the will. This is the part where I have to stop myself. I can't just say, "body be damned", because I spent the last eight months trying to fix my body. I cannot put that in jeopardy just because I'm feeling bad. I worked too hard to get where I am now to throw that away, even if it would mean appeasing my family, my friends and myself. No. It's not worth it. I'm healing, all of this is okay, it's normal. I'm not making up excuses. I don't know how long it will take me to heal, but I can't rush it. Not after all I went through. I'm seizure-free, and I won't give that up.

Emails

I’m working on the surgery section of my book today. I just put a disk sent by my mom into my computer and opened up the files: 129 emails sent by my parents while I was in the hospital. I want to include them partly because I was so unaware while lying in my bed, and partly because this was a big, impactful and hard experience for my parents, too. The only problem is that I have to read them.

I’ve become really good at breaking down when I go back to the hospital in my mind. Now reading through the lines and seeing the pain and fear behind the words pulls the tears up into my eyes.

But no, it’s not just the pain and fear, it’s also the love and hope. The pain and fear remind me of mine and compound it by adding the guilt I feel as a reflex for causing that in other people. All of that suffering makes me want to hug myself so I can hold that girl, the one who lived that blessed and graceful nightmare, and tell her it’s all going to be okay. But then the love. I read an email from my little sister to the rest of my family in response to an update my mom sent out after the second surgery:

“Erica and our whole family come from the most amazing support group. I get tears every time I see all these prompt responses, prayers, good wishes, blog hits, and love. I am in awe and so grateful for all of you- but most of all my sister who is the absolute epitome of kindness and positivity.

Thank you all for showing me and each other how much one person can be loved and supported by family and friends.

With gratitude and love,

Greta”

There was so much love surrounding me, so many people telling me I was courageous and inspiring and all of these things that I never would have thought to call myself. Where was it coming from? How could all of these people care so much? Who the hell was I to be on the receiving end of so much? I didn’t get it. I still don’t. But Lord, do I appreciate it.

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.

2011 Strides for Epilepsy

Six of the eight Living In a Brainstorm team members after our walk!

Warehouse Wedding

The news is on the airport television behind me, going on about something that’s not their business but that smells of scandal and good ratings, as usual. The gate isn’t too crowded yet, but as my coffee cools and boarding time approaches, I’m sure it will fill up; the flights from Minneapolis to Denver are usually full. I have a window seat this time, 18A, and am hoping A is on my right side so I’ll be able to sleep against the thick glass as we fly over the Midwest.

This weekend I went back home to Minnesota for the wedding of one of my close friends from high school. The wedding, in essentially an abandoned warehouse, was absolutely beautiful with candles hanging from branches over the long white tablecloths and lining the balconies of the old theater.

Two of my girlfriends came over to my parents’ house beforehand to do our hair and makeup together and get advice on which dress and which shoes to wear. It reminded me of our high school and middle school dances so long ago, giddy and full of the excitement that comes with the novelty and raging hormones of adolescence. This time the wardrobe decisions were less desperate since none of the three of us were trolling for single men, but the slight edge of melodrama while deciding between the pale pink or the black heels is fun.

In the end, it was a mom who dropped us off at the wedding, all coiffed and ready for pictures. Again heralding back beautifully to the middle school days before drivers licenses.

The ceremony was perfect, the vows and the best man’s prayer making me tear up a bit. The dinner was delicious, and the lack of a DJ surprisingly refreshing as the chicken dance was replaced by a well-thought out playlist. The dance floor was full of childhood friends whom I still love so much. Inappropriate jokes and their slightly homoerotic tendencies left me laughing all night and remembering how much I miss these ridiculous boys who have turned into wonderful men.

First, second and third winds magically entered me each time I was almost ready to call a cab and go home. I danced without caffeine for hours, finally closing the party down around two am. Chatting with the cabbie who drove me home kept me from falling asleep in his back seat, and after using my very last bit of energy to brush my teeth and wash the mascara from my eyes, I fell into bed, passing out as soon as my head touched the pillow.

Healing

I still tear up when I talk about the surgery. Not every time, not when I give my well-worn spiel to a stranger or acquaintance, not when tears would be inappropriate and awkward. No, not then. It’s when I remember the sights, the sounds, the pills, the blue masks hovering over me as I drifted into anesthetic sleep, holding someone’s hand. It’s when I remember the fear - both mine and my family’s. It’s when I’m talking to someone who is so gentle, so caring, that my crumbled guard is flooded with the memories that I can’t push away.

I want it to be done; I wish I could wipe my hands of the last seven months and just enjoy the gift I was given: a new life. I wish I could just enjoy it, but I keep getting sucked back like the stubborn straw that keeps slurping and slurping even though all that’s left is the latte-flavored water from the last melted ice cubes.

But maybe it’s good. I went through a lot. To just walk away doesn’t seem right. When I remember what I went through, I can acknowledge and accept the tests, the surgeries, the fear and the uncertainty that have branded me. When I remember, I let myself start to heal.

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.