Never Thought The Day Would Come

A glass of water sat on a ceramic coaster on the nightstand in my old room. I reached for the dark yellow bottle on the dresser next to it, turning the white cap emblazoned with the Walgreen's logo and tipping one oval pill into my palm. One pill. Not two, but one. A smile played on my lips as I thought to myself, it's really happening.

That was two nights ago. Earlier in the day, I sat in one of the two chairs opposite a large desk from my neurologist. We talked about me and John moving back to Minneapolis a few days before, my new job as a Business Analyst at Target that I start on Monday, the headaches I still get, though they're becoming less frequent, how much my hair has grown back over the past year, the fact that I'm still seizure-free. I held my breath and crossed my fingers as I asked the question I'd come for: "Dr. So said that if I made it a year without having a seizure, I could wean off of my Vimpat. Do you think I can start that?"

She paused a moment, a thoughtful look on her face as it searched my medical records on her computer screen for any reason I shouldn't. "Okay."

Relief, joy, disbelief flooded me all at once and I couldn't help the smile on my face as I said, "I honestly never in my life thought this day would come."

I won't be completely off of the drug for a month, but every day I get closer, I have more and more energy, the way I did seven months ago when I got off of my Lyrica, but this time it's even more noticeable. I'm still on Lamictal XR every night and probably will be for the rest of my life, but I'm fine with that. I always figured that liver failure was what would eventually take me one day, but now I really feel I can let that go. I'm gonna be okay.

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.

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.

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.

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.

I Miss You, Mom

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

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

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

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

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

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

Six 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.

Hurry Up And Wait - MSP To DIA

I still have an hour before my plane starts to board. I’ve been sitting here for one hour already, trying to get the wireless signal from my phone to tether itself to my computer, but apparently the airport has a blanket over all wireless so that you have to pay for theirs. Oh well.

I have my ear buds on to block out the symphony of an overhead tv, people talking on cell phones and a man in the chair across from me snoring like there’s no tomorrow. It’s actually quite impressive. I don’t have any music streaming to my ears, so the small sound blocker really isn’t working.

My head is itching. It’s slightly frustrating, because the itch is coming from the area of my head that is still numb, so scratching doesn’t do anything. Apparently the itching is from the nerves growing back, which will eventually bring the feeling back to the circle of numbness, but in the meantime, it’s quite irritating. I want to scratch!!