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.

Comparing Chairs

The chairs in the radiology waiting room at Rose Medical Center in Denver are brown. Stripes alternate: dark brown curly designs that harken back to a more Victorian era and thin lines stringing together light brown circles - round baubles hanging like decorations on the Christmas trees taken down only a couple weeks ago.

The waiting room is half-filled with other patients - an older couple murmuring quietly in the corner, a Hispanic woman with three toddlers that play with a new baby as she speaks to the receptionist, a woman a couple years older than me reading a magazine, her tan purse on her lap. The brown chairs snake their way along the walls behind them all, dipping in the middle to create a make-shift division in between. I think of Mayo, with its mauve floral prints that will forever be etched in my mind.

At my one-year follow up with my neurologist at Mayo, we talked about the headaches I still get - a couple a week, most responsive to Advil, but about one a month that leaves me incapacitated, teathered to my couch or bed, trying for hours to sleep off the pain, even when it wakes me between dreams of headaches. He looked at me with concern, though his concerned face reminds me of a disappointed face that makes me think that I've done something wrong. Twenty six years of being a people-pleaser, I suppose. He told me that's not normal; I shouldn't be having them still. A few months ago, I made a similar complaint and was ordered an MRI. Apparently, it had shown a build up of fluid in my brain hole, but the doctors figured it would drain itself. Maybe it hasn't. He ordered a CT scan to see what's going on.

"Hi, my name is Erica Egge. I'm calling to schedule a CT," pause, "E-G-G-E".

"Hi, my name is Erica Egge. I'm calling to check on an order for a CT scan," pause, "Yes, I have my patient number," I read it off again, almost by memory. "Has the order been sent to Rose Medical in Denver yet? Does it have a note to call my insurance?" No, of course not. I give the number for MedSolutions and my insurance member ID. "It has to be noted on the order for the hospital to call them," I request, trying to hide the exasperation from my voice."

"Hi, I'm Erica Egge. I called yesterday. Has the order for my CT scan come in yet? No?"

It progressed thusly day after day. It took over a week for pre-authorization, but finally this morning I left my little third floor apartment for the hospital.

"Erica?" a middle-aged woman in scrubs called from a door to my right.

"I'm Erica," I stood upand walked to her, putting the purple cell phone that doubles as my safty-blanket back into my purse. She may have said her name as she led me down a linolium-floored hallway, but I don't remember it.

"Is it a subdermal hemotoma we're scanning today?"

I don't know what that means. "I had brain surgery about a year ago." Her eyes widened in the surprise I've come to recognize, even expect. "I'm doing fine, still seizure-free, but having headaches."

She opened the blond-stained wooden door to a testing room and walked in behind me. A slab of plastic covered in a white sheet with a small pillow for my head formed a make-shift bed sticking out of a large, white doughnut. I took out my earrings and held them in my hand as the bed began to move, jerking to a stop when the doughnut was positioned over my head. It was much quieter than an MRI, which somehow made it feel more ominous. A red light flashed through my closed eyelids. I began to pray. God, please watch over me. Please let me be okay. Please, I begged. The bed jerked back and forth as the machine emitted shots of radiation over my face to the brain behind it.

The ten minutes felt short and long at the same time when I heard a small motor propel my bed back out into the world, freeing me from my racing mind.

"That wasn't bad at all," I said to the tech, cheery with my brave face. Now it's just a matter of waiting. What happens if they find more fluid in my head? It depends. My favorite answer.

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?

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.

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.

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.

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!

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.

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.