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."