One Year Follow Up

The blue glue had formed dry clumps that stuck to my scalp and clung to the bases of each hair springing forth from it. I must say, though, that getting it out this time was much easier than when I had long hair. I turned the pink bottle of Garnier Fructis conditioner upside down and watched a long, creamy snake emerge and coil onto my palm. I ran my hands through my hair, feeling rough spots where the EEG leads had been that morning. The tech who put them on suggested putting conditioner in dry hair and letting it sit for a bit before combing out the glue and rinsing. I turned the black dial on the wall of my parents' bathroom and shut the sliding glass doors of the shower as it filled with steam. I figured fifteen minutes would be enough time: five minutes to fill with white fog and ten to saturate my dry skin and coughing lungs. The steam swallowed me as I stepped into the tan tile enclosure, sliding the warped and frosted glass behind me. I stood with my back to the spigot, letting the hot air warm my body. I had to inhale slowly through my nose to avoid water-induced coughing that felt like choking. I let my muscles relax and melt for a bit; it had been a long day.

My alarm went off at five thirty, Maroon 5 cutting through the early morning silence in the Rochester Garden Hilton. My mom stirred next to me as if she'd already been awake a few moments; John tried to sleep through it but I could see him twitch from his bed a few feet away. We brushed our teeth and washed our faces and my mom and I put on a little make up though it didn't do much to hide the bags under our eyes. In fifteen minutes, we were dressed, packed and out the door. The air was cold outside, a stark contrast from the desert climate of our room. Fortunately the car wasn't far away and it felt like no more than a minute had passed when we pulled into the best parking spot I'd had yet at the Mayo Clinic.

Standing in the steam, I picked up the pink comb on the ledge next to me and began running it through my hair; first one direction, then the next. I pushed the teeth along the scalp just above my hair line; I combed left, picking up glue and wiping it onto my leg, then combed right, finding a little more, and last forward, leaving wet hair hanging straight over my forehead like bangs with a slight curl at the edge where it met my eyes.

When we arrived at the door, the Gonda building was locked. "The doors don't open til six thirty," said a guard. A handful of other early arrivals sat on chairs or leaned against the glass wall separating the heated inter-doorway space from the white marble atrium.

"What time is it, mom?" I asked.

"Six ten," she replied. "Let's go get some breakfast." Caribou Coffee stood with warm welcoming arms across the street and down the block. I had oatmeal, John had a breakfast sandwich and mom had a coffee. I grabbed a paper napkin printed with the Caribou logo and a short holiday-themed Mad Lib. We ate our food and conversed in a series of requested adjectives and nouns, which I entered onto the napkin using the pen I lifted from our hotel room. The result was a mildly amusing story of buying bacon presents for your scissors and decorating a Christmas chair.

Our spirits lightened noticeably with food in our stomachs and we headed back to the hospital, checking in and being directed to the elevators to the desk on the eight floor of the Mayo building.

I'm quite convinced that the elevator in the Mayo building is the slowest in the continental U.S. It rose oh so incredibly slowly and steadily until the climbing light illuminated a black, printed "8", eliciting a ding and a slight lurch as the doors slid open. We stepped out into an unlit elevator bank, slightly concerned as we turned the corner to find an empty room facing an empty check in desk with half of its lights still out. We took a seat in three adjacent chairs upholstered in a familiar mauve floral pattern and waited.

The blue glue came out almost easily with each scrape of the comb. I ran my fingers through my hair every couple minutes to find the next shadow of an electrode. My hands and arms had become covered with hair and little rubbery balls of glue. The steam had stopped its flow and I reached for the silver handle on the wall, pulling it upward to start a stream of hot water from the bath faucet. I rinsed my hands and the comb in the falling stream and watched the discarded clumps travel down the drain before carefully placing the white, rubber plug.

One Year Follow-Up Update 2

EEG showed no seizure activity!! Dr. So wants me to get a CT because of the headaches I'm still getting. Apparently my MRI in March showed some fluid in my brain hole, which was normal, but having surgery headaches at this point is not normal, so he's wondering if the fluid has grown. The results will dictate in part when I can start to resume risky activity like riding a bike or skiing. He'll call me with the results next week and tell me if I can start to decrease my Vimpat! If so, it'll be a long, slow process that will take a couple months. Caffeine and alcohol (minus vodka red bulls) can resume normal activity after I'm off the Vimpat.
All in all, pretty great news! Now just waiting for my insurance to approve the CT and hopefully I can get it done today - preferably early so I have time to get back to St. Paul and wash my hair before dinner out at 7!

Mayo Follow-Up Update

Mom, John and I drove down to Rochester yesterday evening, had sandwiches (me and J) and salad (mom) at Canadian Honker and stayed in a 2 queen bed room at the Hilton Garden - J in one bed, me and mom in the other. I was hoping to snuggle w my mom but no luck.
Woke up at 5:30 to a wake up call and two cell phone alarms. Got to Mayo at 6:15 but it wasn't open yet, so we went to Caribou for bfast. Eventually got in and went to 8th floor of the Gonda bldg to get my itinerary. They gave me a red pager and I thought they were going to call me up, but 7:25 came and I figured out that they didn't know I was there for my EEG. I went up and told them and fortunately the EEG station was at the other end of the hallway, so I wasn't late.
EEG lasted about 3 hrs and included a nap, reading out loud, looking at pictures, looking at strobe lights (yuck) and hyperventilating for 3 min (double yuck). After EEG, got blood drawn and had western breakfast bagel at Bruegger's for lunch. Hit up the billing dept to deal w the $9,440 that mom paid out of pocket in March when I was still fighting w COBRA. Turns out we might not get it back because it was used to pay for two MRIs that didn't receive precertification. We're gonna fight it but there's a chance we won't win. :(
Right now we're waiting to see Dr. So. He'll give us the results of the EEG and I'll ask about the headaches I still get.
Will give an update on our way home!
Xoxo
E

No Longer Scared

<p>Wet hair drapes down the back of my neck, a curtain of dark brown descending from its mat on the flat spot of my head, just above the place where skull joins spinal cord. When it's wet like this, my scar shows clearly: a natural curved part in my hair, a red line carved into the white of my scalp. It's been eleven months and two days since it was stapled back together for the last time. I stood and stared at it in the hotel bathroom mirror, still foggy from my shower. A girl looked back at me, a white towel wrapped around her body, the end tucked in under her left armpit to hold it in place. She had mascara under her eyes, black smudges clinging to her face after minimal success with a bar of soap named after a Mexican grain. Her jaw was set in a poker face, her eyes unreadable, she was neither empty nor full. She looked back at me as if to say, "we've done our best. The rest is out of our hands."

Climbing into bed with a pen and my trusty green notebook, I cannot help but thinking of the last time I stayed here: frightened and determined, awaiting surgery. It was cold that night, January twentieth, but tonight, just shy of a year later, the air is warm; warm for a Minnesota December, at least. The Courtyard Marriott in Rochester is across the street from St. Marys Hospital, where I spent the longest, hardest and most formative eight days of my life. I watched it as we passed by, remembering the early morning when we scurried as fast as we could to the other side, no idea what we were in for. I'm not scared tonight like I was the night before that morning. The alarm I set for five thirty tomorrow morning will bring only the pain of bleary eyes and a pin prick to the inside of my right elbow.

I look at my wrists, the backs of my hands, to see the difference a year has made to their scars - what were once dark red scabs are now nothing more than silver circles ringed by brown. The place where a vice held my head looks today like a slight horizontal line, barely distinguishable from a wrinkle. No, it is not courage or bravery I need tomorrow, it's luck and a willingness to give myself over to whomever is in charge of these decisions. I've been seizure-free since I was rolled out of the operating room on the afternoon of January twenty fourth, two thousand and ten. It was a day I never thought would happen; a year I never dreamed possible. So tomorrow morning I return to the first scene: the check-in desk in the Gonda Building of The Mayo Clinic.

The doctors told me that if I made it a year seizure-free, I would have a ten percent chance of ever having another seizure. So far I haven't had a single one. Tomorrow, an EEG will determine whether or not there's still seizure activity in my brain; if there's not, I'll be able to get off another medication, leaving me with just one. If there is... But here's the thing: the past year has changed me; I'm a different woman from the one who first walked into that white marble atrium. Today, I'm happy, I'm in love, I'm free. Today, I'm no longer a girl and I'm no longer scared. I pray to God that I leave Mayo with good news, but even if I don't, I'll leave as a butterfly broke free of her cocoon to be part of the world.

December 26th

Bare trees wave in the wind, casting moving shadows on the brown grass below. A warm Winter has taken precedence over a white Christmas this year and I venture out into the Minnesota air without a hat or mittens. It's good weather to show off a city known far and wide as just shy of tundra, but I still miss the sparkling blanket of white that covers the branches of the trees that line the streets and yards just lightly enough for little white lights to shine through.

It's December twenty sixth, one of the saddest days of the year. Caribou has stored away its Christmas music, a cheery marquee of chestnuts roasting, wish lists for Santa baby and days that are merry and bright. Fortunately, my decaf skim latte still comes in a white cup with red and green stripes patterned with pine trees and snowflakes reminiscent of old, home-knit sweaters.

Each time the ceiling vent blows, the coffee shop's door is thrown open, swinging all the way back to the end of its hinges and letting in a gust of cold air that negates the heat that first set it off.

At 11am, the sun is shining and so am I, filled with hope, faith and determination. I will succeed.

My Deep Dark Fear

We didn't get home til late. If you can call nine thirty late, that is, which I suppose you can't, but I was tired anyway. And thirsty. Full and thirsty. An empty water glass stood used next to the sink. I picked it up but immediately dropped it as if it had burned me, white hot as it clanged to the counter. No, I thought, no, no, no. A familiar sensation melted through my right hand, pulsing twice like a heartbeat threatening to stir back to life. My legs turned to rubber and I lowered myself to the floor. Maybe my face went pale, the horror within myself etched on its features, maybe a "no" escaped my lips or maybe it was that I'd collapsed, but John came over to me, crouching with his hand on my shoulder, concern bordering on panic in his eyes. "What happened? Are you okay?"

I wasn't sure. I clutched my right hand in my left like I had so many times before and I waited for the shaking. But it never came. I felt frozen, as if any movement I made would cause me to break into a seizure. What was that? "Water," I asked, "can you hand me some water?" I didn't want the glass I'd just dropped. I didn't want to touch it, worried that a bad energy lingered in it still; a demon of Christmases past.

"It felt like a seizure," I answered to John's waiting form, now handing me water and soothingly rubbing my back, "but not a seizure. It had the feeling sort of, but really weak, and my hand didn't move or twitch or anything." I'd been seizure free for ten months, twenty five days and about eight hours. But it wasn't a seizure. So then what the hell was it?

Psychosomatic seizures are essentially your body remembering what a seizure feels like but without the actual electricity surge. They're often brought on by stress. Is that what it was? Did anything even happen or was it all in my head? My always nervous, ever vigilant, still healing head? Having a seizure is my deep dark fear; it creeps around the edges of my mind every time I startle, or sneeze, or drop something or am tired. It's as if my life since the afternoon of January 24th has been lived on borrowed faith and I'm waiting for my luck to run out. Please, God, don't let it run out. This can't be too good to be true.

Running Low on Confidence

It’s funny to think that a year ago I was living with my parents in Minnesota, waiting anxiously to find out when I would be having a major surgery that I knew even then would change my life forever. My apartment had been cleared of my personal effects, all in boxes shipped to my parents or bags in my friend’s basement. A loser sublettor was living here rent-free despite our contract, and would be kicked out in just over a month. I look around the kitchen, the living room, and reflect on how different my life is from the one I’d imagined. I’ve been unemployed for over a year, now. I remember talking to my sister about month before my surgery and telling her I’d be back to work three, four max, months after it was done. She said to be prepared to be recovering long enough that I wouldn’t be working until June. She was right. It wasn’t until late June that I felt recovered enough to start my job hunt in earnest. What I hadn’t planned on was the job market. It’s been almost six months and I’ve had two interviews, neither of which panned out. I’ve applied to at least a hundred jobs, probably more, but still I sit at the kitchen table that has become my “office”, looking and looking, feeling more downtrodden by the day. It seems that a person who’s been out of work since October of last year with only the explanation “Writer” listed on her resume is undesirable. That’s unfortunate. Really unfortunate. I know the economy is dreadful, but experiencing it first-hand is completely different. Our lease is up on the shoebox apartment I’ve loved so much February 5th. Only two months left. What then? We’ve been talking about moving. We both love Denver and so many of John’s friends live here, but the jobs don’t. So then where? Right now the thought is Minneapolis or Seattle. We’re not sure yet, but wherever we go, we need to figure it out soon. It’s a stressful way to re-enter the working world. Sometimes I get nervous that I won’t be good since I’m so rusty, but I know that’s not true. I’ll be fine. I work hard and I’m a quick learner. I think I’m just trying to figure out why no one seems to want to give me a chance. I know that sounds pathetic and whiny and I know that it’s not me, it’s the economy, but after so many rejections, so few calls back, it’s hard not to take it personally. I inhale, I exhale. Air rushes into my lungs, oxygen filling my sedentary body before I blow it back out through my lips, producing an exasperated sighing noise. When will this end? It feels like never. These days I find myself expecting not to get a job. Hopefully it’ll be better somewhere else. I have to believe that, because clearly Denver isn’t working. It breaks my heart to tear the man I love away from the place he now calls home, even though we both know it’s best. It’s not over yet, we still have two months left to find a job here, but with each day that passes with a silent phone, an empty inbox, the applications I send, the calls I make, the networking events I attend seem more and more futile. I pray for us to find something, but maybe this means that we’re not supposed to be here anymore. Maybe our path leads elsewhere. As long as we’re together, I know we’ll make it. I just wish it would happen sooner.

Shameless Self Promotion

Denver's 9News Health Fair featured me on their Facebook page! Click here to check it out!

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."

Do I Or Don't I?

I sit in a marginally comfortable armed chair, perspiring slightly under my black suit jacket, across the desk from someone who has the power to change the course of my life with two words: "You're hired" or "I'm sorry." My heart speeds up in my chest and my clammy hands begin to shake. It begins with, "Tell me about yourself," and I start in on my slightly-eclectic professional background, explaining the positions I've held, what they've entailed, what I learned and how I would be an asset to their company. But soon enough comes the question I dread: "So you left your job in October of last year.What have you been doing since?"

I've dealt in the past with telling friends, classmates, colleagues and current employers about my epilepsy, but what's the protocol when it comes to telling future employers? It was never relevant before, but when I'm asked about what I've done over the past year, what do I say? Technically I can't be not hired because of my epilepsy as long as I'm able to perform the tasks associated with the job, but "technically" isn't how the world works. I'm proud of what I've done over the past year. I'm proud of the strength I found in myself and the relationships that grew when I learned how to depend on the people who love me. I learned about life; I learned about the world; I learned what it means to be human. But as soon as I say, "Well, I had brain surgery," the air in the room changes. I watch their eyes in slow motion, waiting to see which way they go: do they cloud over or light up? Am I written off as unfit, unable, or do they want to know more? Are they wary or intrigued? Have I just signed my own death sentence? So sometimes I just choose to omit one of the most formative years of my adult life. "What have you done over the past year?" In that split second I make my decision, "I've been writing. I'm currently working on a non-fiction book about surgery for epilepsy patients. I've also been doing a lot of work with the Epilepsy Foundation." I hold my breath. Did I make the right choice? I never really know.

When I first started this blog, my mom warned me that a future employer might see it and not hire me because of my epilepsy. I told her that that's fine because I wouldn't want to work for someone like that anyway. I still don't, but what happens when jobs are hard to come by? Do I have to put my financial needs above my principles until I can prove that I'm just as good as anyone else? I don't know. I'd like to think that my surgery wouldn't work against me, but unfortunately the world is full of people who don't understand that health problems can be overcome, whether you're seizure-free or not. Life goes on. People forge on. I know that, so why do I feel this anxiety gnawing through me from the inside out? Why do I feel the need to be discrete when I wear my scar like a badge of honor? A badge covered by dark curls, but a badge none the less. I just feel so conflicted.

Last night I realized something obvious, something plain as day: Google. Anyone who's interested in hiring me could easily find this blog, could find my writing, could read about all of my innermost thoughts. I suppose I should feel slightly exposed, but instead I feel relieved. I don't really have much of a choice, do I? Even if I don't talk about my surgery during an interview, it will be found, it will be learned. If they're gonna find out anyway, there's no reason for me to hide it. I never want to feel ashamed of my epilepsy. Never. For me, talking about it has always been my small way to spread awareness, one conversation at a time. Maybe now it means one interview at a time.

The Extra Inch

The botanic gardens are empty but for a small spattering of mothers with daughters, husbands with wives, friends laughing among the dried trees and bushes, their nametags curled in on themselves, mimicking the brown leaves that cover the ground. The hot glue I used to affix purple ribbons to pins and jewels to ribbon breaks apart like rubber that's lost its stick. A plastic badge hangs from a black lanyard around my neck; it says:

Erica Egge
I had brain surgery in January 2011 and have been seizure-free since.

The most formative year of my adult life reduced to such a small sentence. How insignificant it seems as I read it upside down. The question that has been growing since summer appears in my mind full fledged: what now? What am I supposed to do now? How could anything compare to the courage I've found within myself, the inspiration I've given others in return for that which they gave me? Do I return to the life I had before? It seems so unremarkable. Could my soul survive on the nourishment of volunteering or is that not enough? I can still blog, still talk, still advocate, but it's not enough.

Today was the Foundation's kick off to the event series Living Well With Epilepsy. Dr. James Rouse did more than speak, he inspired. He pushed us to do more for ourselves and each other. Near the beginning of the seminar, he asked us to reach our hand in the air as high as we could. Then he said to reach higher, and every hand grew at least an inch. He observed that no one really reached as high as they could until they were pushed further. It's that extra inch, he said, that we need to live in. That extra inch is where we find greatness. It made me think.

What about a fund? What if I raised a fund that would award grants to epilepsy research and outreach programs? Could I pull it off? I'd have to raise it from scratch, find ways to promote it, figure out how best to invest it and, maybe the most difficult, how to award it. How would I decide who and what most deserved it? How much would I, or could I, give? Could I really pull it off?

Guest Post

Mayo Clinic has a blog where patients can tell their "Mayo story". You can check mine out here! You can share your own as video or text. Let me know if you do!

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.

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.

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.

Guest Post

Check out a guest post I wrote for UKEpilepsy about surgery: http://www.ukepilepsy.com/epilepsy-stories/best-decisions-of-my-life/

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

Sick Day

The floor next to my bed has become a biohazard; a toxic wasteland of used tissues, obstructing the view of the carpet below. Every passing minute the layer of white grows deeper and deeper, leaving my nose red and chafed. I tried putting thick hand lotion on it last night, but it only lasted about ten minutes before it was all blown off again.

I inhale deeply, my lungs thick with mucus and crying for oxygen, but the forced air brings on a coughing fit that leaves me wincing and clutching my throat with a cold hand in hopes that it might bring down the swelling I can feel growing in my trachea.

Two Advil found their way into me, summoned to fight the headache that I can't quite identify: sinus or fragile skull; I'm not sure. Yesterday I tried combining one Advil and one Wal-phed (for which I had to sign a waiver promising not to make meth), but I didn't feel a difference in snot-output, so I gave up.

Today is Day Three of my first cold of the season. No idea where I got it from since I'm often quite isolated, but colds are funny that way - if they want to find you, they will. Now I lie in my bed, mind foggy and eyelids drooping, and contemplate the fact that I need a job, though I'm inwardly glad that I'm allowed a guilt-free sick day today.

Parking Tickets

I lay in my bed, warm and cozy under sheet and comforter as an almost chilly breeze wafted through the window above me. I scooted as close to the edge as I could, reaching the cable that connected my phone to its charger as far as it reached so I wouldn't have to turn to my left, which still bothers me.

I glanced at the bird and flower collage clock - 9am - and a nagging feeling came over me; I was supposed to do something. But what? I thought back: today is Wednesday, I'm going to lunch at 11:30, but no, that's not it... I have to move my car! I jumped up, beelined to my keys that sat on the kitchen table and ran out of my apartment still clad in red plaid boxers and an old tattered tshirt from John's fraternity, my hair sticking straight up, clearly illustrating that I sleep on my right, and my face still greasy, mirroring every object I passed as if my nose were covered in glass. I clutched my head, cursing myself for the jostling caused by my comical half-jog and promising to take two Advil when I got back. The morning air was cold, reminding me that the season changed last Friday, dropping to the seventies after our final Thursday in the hellish nineties.

Speedwalking toward my car at the end of the street, I checked the other three mis-parked cars to see if they had yet gotten tickets on street sweeping day. No yellow envelopes were folded in half and shoved through the crack in car doors, impossible to miss next to the driver's handle. Hope welled inside of me, maybe the Enforcers hadn't come yet, maybe I could keep my twenty five dollars... Joy spread shamelessly through my body as I reached my beat up silver Sebring: no ticket. I thanked the parking gods and jumped in, NPR coming through my speakers when I turned the key and shifted into drive. Five cars sped by before I was able to turn right onto the one-way at the end of my street that bordered the North end of the park. Ten feet later I pulled into a safe parking spot with a two hour limit; more than enough to get me through a shower, bowl of Frosted Mini Wheats and the rest of my emails.

Of course I saw an empty parking spot completely legal and right across the street from the door to my building, but I didn't care enough to trek back to my car and move it again. My body contemplated a shiver as I passed a man out walking his great dane. His eyebrows rose as he took in my pajamas and spiky hair and offered a smiling "good morning" as he saw the keys in my hand, making the connection between my haggard appearance and the parking sign behind me. "Good morning," I answered, and it was good: I hadn't gotten a ticket.

Changing Seasons

All of a sudden the seasons have changed. The air on the patio of the Starbucks at King Sooper's carries a chill as it swirls gently toward my cold nose. I people watch the shopping carts in the parking lot, guessing what my neighbors are having for dinner as my lattte cools - the first hot drink I've ordered in a while. Goosebumps rise on my arms and legs, bringing to mind the freezer section of the grocery store I'm about to enter.

After months of heat that leave me weak and lightheaded, I'm glad for the crisp air that awakens my senses and sharpens my mind.

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.

Tracing Scars

Last night I sat on my red couch with the cushions in need of re-stuffing, my bare legs folded to the side as I leaned my weight to my elbow as it rested on the squishy arm. A thick book lay open on my lap, a glass of ice water on a coaster within reach. I fingered my scar as I read, feeling the divot grow deeper and more pronounced the farther back I reached. I traced the bumpy ridges that betray the titanium plates that lay under a shallow layer of scalp, holding my fractured skull in place as it heals. A couple thick hairs grow straight out of the scar, short and spiky as they twist their way through the former home of staples and gauze. Overall, I can't believe how much my hair has grown since it was shaved in January, my scalp dyed yellow from the surgical iodine, scabs forming over the spots rubbed raw from the vice that held my head in place as it was sawed open. Today, my scar isn't even visible unless I pull my hair to the sides, away from its severe middle part. It curls its dark brown way over my ears, ending just below my earlobes. The scar feels deep and dramatic to my fingers, though I suppose most cuts and scrapes do, all looking much less impressive when finally viewed in a mirror.

It hurts to touch my scar for long, pain spreading to the growing bone beneath, so I drop my hand and turn the page. The incision is really the only part that hurts these days. I can't lie on my left because it's still too tender, but as long as I avoid pressure, I'm mostly okay. The skull remodeling itself around the plates and screws does still hurt. Two or three times a day, I make my way to the basket of pills in my bathroom or the bottle of Advil in my purse to ward away a quick, sharp pain or a low, dull one, my bones creaking and scraping together like the wooden floors of an old house expanding in the summer heat. Fortunately they're working, quieting my mind and smoothing out the winces on my face in a matter of minutes. It's been a month since the last time I was put out of commission and relegated to my couch for hours. I'm starting to see that I've turned a corner. Just five more months until I can get off another medication; five more seizure-free months until my chance of relapse is less than ten percent. At the same time it's gone so slowly and so quickly. It feels like only yesterday I was in my parents' home, the timer on my phone set to my daily Percocet regimen.

An hour later I woke up to a shoulder wet with drool, still sitting with the book on my contorted legs, my limp fingers brushing the back of John's shirt. "Honey, wake up, it's time to go to bed."

My Epilepsy Story: Mothers

I found this blog today and one post in particular struck me. I think about my own mom and how amazing she's always been, supporting me and my epilepsy even while she was scared herself. She sat by my bedside in the hospital and held my hand, making up stories to keep my mind off the pain. So to all of the moms out there, whether your kid has epilepsy or the flu, we thank you for taking care of us.

My Epilepsy Story: Mothers.....: Lately I have been blessed to meet mothers that inspire me.... As I listen to these mothers talk about the challenges that their children ha...

Moving In

As of September first, John is officially moving in! For all intents and purposes, we’ve already lived together for a while, but now it will be official!

I spent yesterday running up and down the concrete stairs of my building as I did load after load of laundry between job-finding initiatives. After two loads of delicates/work out clothes, one of colors, one of towels and one of sheets, I rearranged my shelves, moving picture frames, baskets of office supplies and jewelry boxes to make room for the extra t-shirts, shorts and pants that will be permanent residents. I went through my over-stuffed closet and took out all of my winter clothes and dresses that I don’t wear and packed them up to make room for his shirts and suits. This is really happening! I’ve never before lived with someone more than a roommate; neither has he. It’s new for both of us, and while we’re each a little nervous, it’s good nervous, the excited kind precipitated by moving forward to the next chapter of life.

This afternoon I’m going to get a couple pictures of John and his friends and family to swap for some pictures of mine in the many frames balanced on bookshelves and window sills. It’s part of the transformation of a girly bachelorette pad into a compromised co-habitat. Wish us luck!

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

Pressure

My phone chimed the arrival of an email and I realized my eyes were closed. When did that happen? I lifted my head, leaving a face-shaped grease mark on the pages of my old accounting text book. I thought of how many similar stains remain on the pages of my college texts and hand outs and wondered briefly where they all are these days.

I'd been thinking about what to do with my life (as I do every day) and thought about accounting. I like puzzle solving and I'm good at pattern recognition, so why not? I literally dusted off Financial Accounting Edition 9 and the mostly empty notebook under it and brought it over to my kitchen table - my job finding war room. As I read through the faded highlighter, I realized how rusty I was. Was it really worth it to try to re-learn accounting? I might not even get an interview for a job that requires it. Maybe I'll cross that bridge when I get to it; I know I can get it all back if I put my mind to it. As long as my mind is awake, that is. My eyes started to droop again.

I went to the doctor a few days ago and got a proper standard check-up for the first time in at least two years. I figure I've seen enough doctors to last me a lifetime, but besides a cursory am-I-healthy-enough-to-have-surgery look over, they've only been looking at my head. A slightly older nurse led me back to a small office off of the waiting room. I stepped on the scale, deciding that my clothes obviously weigh a considerable amount, told her my history and slowly listed the names of my many medications as she looked each one up on their new computer system. As I spelled out each medication and waited for the dusty computer to recognize it before repeating the dosage, I kept thinking how much quicker it would be if I were to just write it myself. Ten minutes later, she lifted a stethoscope and pressure cuff off the wall to take my vitals. Pump, pump, pump, the air squished out of the rubber bulb and into the growing black band that was cutting off my blood supply. I've always hated having my blood pressure taken - I keep thinking about how it has to collapse my arm artery, which freaks me out. Finally, mercifully, she deflated the cuff and pulled away the Velcro. "Is your blood pressure usually really low?", she asked. "Um, yeah, it's generally low", I replied. "Okay, I just wanted to check that my cuff wasn't broken"... ??? "What is it?", I asked. "Ninety over fifty". What? That's low, even for me. But suddenly it made sense: the fatigue, the heat intolerance, the head rush every time I stand up, the fogginess in my mind. I don't have blood in my head!

I told John about it on my way out and when he got home, he spent a good twenty minutes online trying to find out how to increase blood pressure. Lie on my back with my feet up in the air; work out lightly to get the blood flowing; avoid stress, as it makes your veins dilate; eat salt; cross my legs. That night I lay on my bed, feet propped up on a three-pillow tower, feeling my mind return to me. I took some Advil to relieve the pain of the building pressure in my head, thinking about the trade-off between blood in my brain and pain in my head. Lately the pain has only been along the incision as my skull grows back together, bone fusing to bone, remodeling around Titanium. Soon it will be nothing more than a scar, white on white. Soon. In the meantime, I'll wait on my back, legs crossed above me.

"Upside Down Girl"

As I pressed my feet into the leather straps, my arms lying at my sides, I re-positioned my shoulder blades underneath my back to hold my weight away from my head. Pressing my triceps into the mat, I took a deep breath and swung my legs up, toes in line with my nose, a leg's length above me. My whole body tensed as I focused completely on keeping my 130 pounds of pressure off of my head. I curled my torso to lay each vertebra down in turn, completing the move by bending my knees and pulling my heels back toward my body. "Short spine massage", that's what it's called. Short spine is one of my favorite moves in Pilates, but most days I can't do it because of the pressure it puts on my head. I've adopted various ways to modify moves that would otherwise take me upside down, because if I don't, if I'm stubborn and do them anyway, I get a painful, throbbing reminder that my skull is still growing back together. Even hanging my head down pools blood in it, leaving me shooting my hand to the left side of my head to steady myself, as if my touching my head I can make the pain go away.

Today before by 4:30 class, I unscrewed the child-proof cap of the Advil bottle in my bathroom, downing two gel capsules with stale water as I ran out the door clad in black lycra-spandex and a gray tank top. I've gotten in the habit of taking Tylenol or Advil as a preventative measure before Pilates or yoga. It does help, even if my over-ambition this afternoon left me with a headache. Still, it was worth it to be able to do more, do everything the other students do. So many days I sit there, envious, as they contort themselves, balancing on their heads and shoulders while I do various core-centric leg lifts. But not today.

I've been thinking lately about my current limitations within Pilates. I want to, and am planning to, do the instructor training program that starts this fall. Pilates is like my own personal therapy, teaching me how to control each little muscle in the body I felt betrayed me. If seizures made me feel helpless, Pilates made me feel powerful. I want to give that confidence, that reassurance that we still have control, to others. The only problem is that I have to be able to do all of the moves through Level 5. Right now, I can't do that; I can do modified versions of almost anything, but as soon as I have to go upside down, it all depends on how my head is feeling that day. I'm just hoping that by the time the next class starts, I'll be able to keep up.

I smiled as I extended my legs over the lowered reformer bar. I did it. I did it and I felt great. My instructor grinned as she walked over to me, "Look at you! You're upside down girl today!"

Quick FYI

I changed the Twitter account to: lvngnbrnstrm - Living In a Brainstorm without ANY vowels. Enjoy!

Pilates and Ice Cream

Finding a job is hard on your confidence. I was overflowing with pride, self-worth and the belief that I could do anything just a few months ago. What happened to that? How can I get it back? I did so much, survived so much, but the biggest challenges to my confidence are only beginning.

I need a good pep talk. And maybe some pilates and ice cream...

Twitter

Check it out, I'm on Twitter: @lvngnbrnstrm. "Livinginabrainstorm" was too long, so I took out all of the vowels. Despite being a blogger, I really have no idea how Twitter works, which may or may not make me an embarrassment to the blogosphere. Either way, I'm planning to use it to send out various little ideas or quote I come across that help me to stay positive and healthy as I continue to recover and live in this wonderful world. Also, for anyone in the Denver-ish area, the Epilepsy Foundation of Colorado is putting on an event called Living Well with Epilepsy at the Denver Botanic Gardens on November 5th. You can check out their website for more information.

Homesick

It's my mom's birthday on Monday. As I knelt on my beige, mock-shag carpet, using my nightstand with the warped "wood" as a hard surface, I wrote her a card. The card itself is insubstantial: a picture of a guy at a gym on the front and when you open it up it asks you what color his gym bag was. But it was the note inside that brought to the surface a feeling I hadn't been able to place, though it's held over me for days. I thanked my mom for taking care of me, driving to Rochester and back over and over; seeing Tangled with me on Thanksgiving at a small theater near our motel the night before my monitoring started; sitting by my bed and feeding me when I was too weak; telling me made up stories to take my mind off the pain; putting cold washcloths on my face; slathering butter on apple cinnamon muffins to get more calories into my thin post-surgical body; playing Bananagrams with me; and all of the other things she did for me every single day. I'm homesick. I'm homesick for the time I spent with my parents in my "love cocoon", not worrying about life, not anxious about my future, just focusing on healing - both physically and emotionally.

I spent today looking for and applying to jobs. I found them on Career Builder, Job Finder, searching through the top employers and top companies to work for in Colorado. I networked, sending out emails and setting up meetings. I dealt with the IRS, which is auditing my 2009 taxes and says I owe them five thousand dollars in capital gains taxes even though I had a loss, not a gain. I feel like the sharp edges of life are coming forcefully into focus; right when I accepted blurry watercolors, they were gone.

Share Your Story

Sometimes living with epilepsy can be lonely. Despite how many of us are out there, people don't talk about it, and it can leave you feeling like you're the only one. I promise, you're not. I know one random girl in Denver telling you you're not alone might not mean much, but it's true. We're all around. We just need to open up and talk about it. When I started to tell people about my epilepsy and how I deal with it in my own life, people started to come out of the woodwork; it was amazing and truly touching, and it continues today. When you share yourself, you help others to do the same, and a bond is created; a bond that can't break, because you helped each other stop hiding a piece of yourselves and thereby live life to its fullest. You can't really live if you're busy spending your time and energy trying to keep yourself a secret. As soon as you can come to terms with your epilepsy and accept yourself for all that you are, not just the parts you cherry pick to display, a weight lifts off of your shoulders and suddenly you feel free.

The Epilepsy Foundation of Colorado has an ongoing series called, Share Your Story. In each newsletter, people with epilepsy talk about living with it - the struggles, the challenges, the silver linings. Check out the most recent edition (I'm in it, too!): http://www.epilepsycolorado.org/index.php?s=10796.

Coming Back

It's hot here today. I open the door to my car and the air ripples like water, distorting the images behind it and hitting me with a wall of heat. As much as I feel bad about escaping the beautiful sun to sit in front of my air conditioner with the blinds closed, I do so because I don't do well in heat. As the temperature rises, I get lightheaded and weak. I have to stand up slowly, often holding on to something so I don't fall over. Instead, I sit on my couch with my computer and take a cold shower before going to bed and trying to fall asleep. I feel guilty, but not guilty enough.

Mild allergies notwithstanding, I've been feeling pretty great lately. Any headaches I get are focused on the left side and go away quickly with Tylenol. Slowly but surely, my bone is growing back. It's a wonderful feeling to not miss the hours spent on my couch or in bed nursing a pain that won't go away. I'm really here. I never thought this day would come.

Yesterday, I spent the day helping John pack cardboard boxes from a coworker and colorful bins from Home Depot full of his worldly possessions and label each with its contents and Storage or Not Storage. I lifted, carried and sweat through trips to and from the car, apartment and storage unit. And I felt great.

Recovery has been a long road, full of setbacks, frustrations and disappointments, but I feel like I'm really here, on the other side of it. I'm still careful with myself, observing my one year embargo on biking, skiing, tubing, etc., but I can lift, hike and concentrate and actively function for a whole day. I'm finally back.

Filters

My posts begin in my head. Murky thoughts swirl like the hot, dense fog that precedes a planet. I watch them spin and even though I can’t say what they are, I begin to pay attention to how I feel. I look at the multicolored bowl of granola sitting on the table in front of me; I decide if I want neutered (decaf) coffee, tea or grapefruit juice; I read my mom’s handwriting on the sticker covering the Amazon box containing my replacement Kindle, all the bar codes scribbled over in marker. What do I feel? Hungry? Full? Tired? Homesick? Suddenly, words form from the mist, arranging and rearranging themselves in my head, impatiently knocking at the door to my fingers as they search for a keyboard with which to purge themselves. My thoughts begin to solidify and suddenly they’re pouring out of my fingers, spilling onto the page, splashing against the margins. Everything comes out. The flood gates open and everything inside of me comes out. I can’t help it.

But now things are different. Now I’m looking for a job again. I can’t just say everything I think, everything I feel. Suddenly I see that I need to filter myself; I can’t post anything that could put my job hunt in jeopardy. How can I assure someone that I’m ready to start working again if I turn around and write about a debilitating headache I had the day before? I have to think of these things. I hate having a filter, having to censor my mind; it doesn’t feel right when for so long this has been my personal therapy, the place where I’ve laid myself bare for the world to see. More than once, I’ve put up a post just to take it down a few hours later when I realized it might be too honest, make me too human, too vulnerable to scrutiny. And it kills me, because when I started this, all I wanted to do was be honest, human, vulnerable, real. I wanted to feel scared, happy, excited, frustrated, in pain. I was raw.

I still write it all, and I can put it in the book, but until then, I’m learning to struggle against the desires that broke the chains of my inhibitions, privacy, independence nine months ago. I felt free and wild as I wrote about my most intimate thoughts; it was wonderful. Now I’m trying my damnedest to edit myself, to say what I want to say without saying it. I don’t know what that means, but I want to. I’m trying to learn. I’m trying not to feel trapped.

Work Through the Pain

I blinked bleary eyes, trying to see the neon green numbers on the alarm clock from my horizontal position on the bed. Nine am? I must've slept in. I flipped onto my back, trying to decide whether to wake up or keep dozing. Dozing fought valiantly, but my guilty conscience won, admonishing me for lying in bed so late. The cat had no desire to cuddle with me, so I resigned to getting out of bed. And then it hit me. As soon as I sat up, pain shot through my head; a lightning bolt through foggy sky, disrupting the air around it and sending shock waves through my body.
"Are you okay?", John asked.
"I don't know", was all I could reply. I stood up slowly, holding onto his shoulder to steady myself as he watched, concerned, from his perch on the foot of the bed. I reached for Tylenol, a constant staple in my purse, but bending over just made it worse. I clutched the left side of my head, straightening as quickly as I could, and took the water from his outstretched hand. I swallowed the two, white pills with the ease of a veteran and hoped they would work.
"Honey, why don't you just stay here and rest", he urged. Lying down would be nice, but, stubborn as I am, I insisted on driving home. I promised I'd be fine, the drive is less than five minutes, I'll be sitting down the whole time. "Okay," he conceded, "but don't make me regret this."
I haven't had a debilitating headache in a long time. I'd woken up on my left, but had only been that way for an hour. Normally I can handle that, lately, at least, but I guess I'm just touchy. Heaven forbid a day passes without remembering my surgery.
I made sure to turn my head slowly as I backed out of my parking space and turned right onto the street. As long as I moved slowly I was okay. Okay-ish. What hurt more than driving was carrying everything up the stairs to my third-floor apartment: purse, backpack with computer, bag of last night's dinner and a key lime pie we'd made for dessert. My knees went weak and my head throbbed at each landing. All I kept thinking was that I'm going back to work. Erica, if you're gonna start working again, you have to push through it, nagged at me.
"Beauty is pain, honey", is what my mother told me when I was learning how to walk in heels. But life is pain. Life hurts, but I can't let it stop me from living. What I need to do is work through the pain, because it's not stopping anytime soon.

Creeping Insecurities

Six months ago yesterday I had my last seizure. I never thought I would say that. I really didn't. This milestone - half a year - brings me both calm and fear. I feel reassured having stayed seizure-free for so long, affirmed in my belief of success, trusting of my body. But what if my body betrays me? Over the past week or so, I've been getting strange sensations in my hand. Mostly it just feels weak, but it reminds me of what I used to feel as part of what I called a "micro-seizure". The past few mornings have brought with them a feeling in my head almost like a cd skipping; I turn my head but the scene takes a split moment to catch up, leaving me on edge, reminded of a feeling I used to get. What if it didn't work? What if these last six months have just been a vacation and real life is waiting for me around the corner? I'm terrified. I'm exhausted from worrying, testing, cutting, recovering, and worrying some more. Will it ever really be over? When will this fear that waits in the wings and grabs me like a vice leave? I pray over and over every day that the seizures really are gone; I pray for comfort and assurance and peace. I ask God to keep me safe and dispel the small, sharp, creeping insecurities that prey on my mind like a parasite. Please, please let it have worked. I've come so far, please don't take it away.

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

Before and After: Surgery #1

Six Month Anniversary

The deep throbbing just behind my left temple beats a syncopated rhythm into my head. I chase two Advil gel caps with grapefruit juice and hope that it goes away soon. The headaches are fewer and farther between these days, but every once in a while they come out, reminding me that six months isn’t as long as it used to be.

I spent the morning job hunting: getting back to emails, contacting anyone who might know someone, applying online, scheduling an interview. Cooking, cleaning and writing fill out my to do list for the rest of the day. As I take a pen to my green notebook and fill it with, “email so and so”, “unpack suitcase from Minnesota” and “print out shipping label for Kindle return” and cross off, “exchange printer ink and get printer paper” and “put in maintenance request for air conditioner”, I can’t help thinking how different my day is from the same one exactly six months ago. At five thirty am on January 20th, I ran through the early morning dark, bundled against the negative twenty degree weather in a black puffy coat and boots, to the hospital across the street from my hotel, mom and dad in tow. We scurried along the perimeter of the building, trying to shield ourselves from the wind, and picking up pace when we rounded the corner and saw the light from the entrance. My nose started to run as soon as we stepped inside and I jumped the admissions line to get a Kleenex from the desk. The weather in Denver today mimics the difference between that day and this: ninety degrees and mostly sunny. When I step into the air conditioned inside, I notice the sweat on my body and crave a shower rather than a Kleenex.

As I look at the clock on the bottom right corner of the tool bar on my computer, I wonder what was happening at 10:26am that day. I was in surgery by then. My head had been shaved and placed in a vice. I put aloe on the oval-shaped scar on my forehead from that same vice this morning. I put aloe on the scars on my left hand and wrist from the IVs that pumped the anesthesia into my body. The surgeons cut through my scalp, pulling it back and removing a quarter of my skull with a saw. At 5,280 feet above sea level, the atmosphere in Denver is thin, so I’ll put spf 50 on my semi-circle scar before I go out, even though my hair has grown to almost three inches and mostly covers it.

Over the next few hours, 180 electrodes would be placed on the surface of my brain. The email my mom sent to our family between rosaries conveyed the updates given her by the nurses. The email she sent me this morning included an invoice from a follow up appointment I had in June that’s still being processed by my insurance. She said she’s at the office catching up on work from last week when she and dad were at the cabin with me, my sisters, my nieces and nephews, brother-in-law, and boyfriend. She says the weather there is still really hot and muggy.

My parents got to see me around 3pm. I was still coming out of anesthesia and don’t remember it, but they were there. Today at 3pm I have a phone interview scheduled. Somehow, more exciting than that is that I slept on my left last night! In the hospital, I couldn’t even turn my head to the left; I made everyone who visited me sit to the right of my bed so I could see them without putting any additional pressure on my fragile, skull-less brain. For the better part of twenty five years, I’ve slept on my left, but for the past six months, I’ve had to sleep on my right to spare my tender head. Waking up on my left side at 7:30 this morning felt amazing. Absolutely amazing.

I guess, in summary, I have a ways left to go, but in the last six months I’ve been given a new life. My body is lighter, sweeter, and I’m happier than I can ever remember being. I feel loved, blessed and so grateful.

Seams

It is the seam on the circle of life that is at once so terrible and so wonderful.

One Down!

Today is my first day off of Lyrica! I only started decreasing it a week ago, but already I feel like I have more energy. Maybe that's a placebo effect, but I honestly don't care. I've been so tired and missing caffeine like crazy, so every little bit helps. I can't believe that this is really happening. The doctors told me that if I made it six months seizure-free, I could get off of one of my three seizure meds, and if I make it a year, I can get off another. It's a couple weeks early, but I can't believe I've gone this long without a single seizure. It's really real, isn't it. Huh. Wow. I never thought that the day would come where I really was seizure-free and could get off of my medicine. Granted, I'm most likely going to be on medication for the rest of my life, but it'll just be a small dose of one medication, not three.

I get so nervous sometimes that maybe it hasn't gone away, maybe it'll come back. My right hand is still a little weak, I'm probably at 90% or so, and every time I notice it, I worry that maybe I'm about to have a seizure, maybe I am having a little seizure. But I'm not. Sometimes I still can't believe it. But this time it's real. I'm really getting better.

I still get headaches and I still can't sleep on my left side, but overall I'm feeling really good. When I was first researching the surgery, I never would've imagined that it would take so long to recover, but I guess it does. I've been out of work since October, which seems crazy when I think about it. Nine months. What have I been doing for the last nine months?? I guess a lot of sleeping, popping pain pills, researching, testing and writing. Life has kept me pretty busy, but in the last couple weeks I've started to get bored. I'm ready to go back into the workforce. I'm ready to get a job again, be a productive member of society. A paycheck wouldn't hurt, either. Now it's just a question of figuring out what I want to do with my life and getting someone to hire me... Easy peasy...

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.

Kind of Exciting

The Epilepsy Foundation of Minnesota just released their July issue, and there's an article on my blog! Pretty cool, huh? In case you want to check it out, click here and it's on pages eight and nine!

Packing for Summer Camp

Tomorrow morning at seven am, I'll load up my car with a white and pink gym bag full of too many things I likely won't need and a backpack containing my computer, notebook and a couple books and head out. I'm spending the next five days at the Epilepsy Foundation of Colorado's summer camp for kids with epilepsy at the YMCA in Estes Park. Excited as I am, I had a gyro for dinner from my favorite Greek place since I know I'll be eating camp food for a week. Now I'm downing water, though, since the gyro filled me up with enough sodium to last me a month, but that's a good thing because my medications give me really low sodium, which can make me feel faint and tired and weak, and I don't need to feel those while chasing after water jugs, s'more fixings and small children.

On Wednesday, I ordered a refill of my Lyrica so I would have enough for the trip, but my prescription had run out. The Walgreens pharmacy staff sent a message to my neurologist's asking them to approve another refill, but apparently no one ever got back to them. Now I'm out. I called the clinic this morning and got the on call doctor, who gave me two days' worth of pills to carry me through Monday, when I can get ahold of my doctor, but on Monday I'll be in Estes Park, which doesn't have a Walgreens. Plus, I'll be at camp. I was checking around online and found three other pharmacies there, so hopefully she'll be able to send a prescription to one of those and hopefully I'll be able to duck out quickly to run over and pick it up. It's frustrating when something like this happens. I get excited that I remembered to order my pills early, but then I find out that the prescription doesn't have any refills left and no one authorizes it for more, so I'm suddenly left with no pills. It's irritating. I did, however, find out just the other day that I can start to wean off of my Lyrica! On Monday, I will have been seizure free for five months! Pretty amazing. I still have to talk to my doc about my decreasing plan, but the wheels are in motion! I was also told to get a CT scan of my brain because of the headaches. My doctor at Mayo said that the tenderness I feel on my left is normal, but the frequent recurring headaches are not. Slightly concerning, but at least we're still looking into it. So that's good.

Anyway, I need to finish packing now so I can get some good rest before a week of sleeping few hours on an uncomfortable bed! I'll try to post while I'm there, but I may not have Internet access, in which case I'll be back Thursday!

Erica