Tides

I reached for the alarm on the new purple cell phone that sat on my nightstand, knowing that I'd already used my allotted one snooze for the day. I slid my finger across the screen, silencing it as I sat up and slowly, ungracefully, swung my legs over the edge of the bed. It's been exactly fourteen months since my first surgery, but as my hand lifted to cover the throbbing on the left side of my skull, just above my ear, not so deeply buried under its scar, I remembered that fourteen months really isn't that long.

I became more aware of the extent of the pain with each step toward the bathroom, my left hand holding its head in place, my right rubbing at my tired eyes. The light in the hallway, brighter than I remembered, gave way to a pleasant darkness in the unlit bathroom, which I held onto as I brushed my teeth, my thickly shadowed reflection barely visible in the mirror. Shaving my legs in the dark seemed inadvisable, so I winced as I begrudgingly flipped the switch on the pale green wall before turning on the water.

The Advil I'd taken upon awakening finally started to kick in mid-shower, but even walking into work, I felt the pain with every footfall. I tried not to let it show in my face as I braced my body for each wave. A voice inside my head whispered that when I didn't have a job, I could have stayed in bed and tried to sleep through it. I only let myself long for that time for a second before issuing what I don't think will be the last pep talk: Erica, listen. You can do this. It really doesn't hurt that much. You already took Advil, so whatever you're feeling is not real. You're making it up. Stop making things up and stop feeling sorry for yourself. You don't have time for that. Game face. I wasn't making up the pain, but telling myself it wasn't real somehow helped... I think... At least I was able to continue on productively with my day. Two more six hour rounds of Advil and I'm feeling pretty good. The headache lingers, but it comes and goes like the tide, calling my attention to my past, reminding me who I am and what I can do, before releasing me to the present.

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.

The Longest Day

I was watching a show the other day about the training of special forces for various branches of the military. One episode featured a final exam called The Longest Day. It began with paddling a rubber raft through crashing waves, carrying it through the trees, completing a mission and walking the miles back through tear gas without masks. Somehow that sounds worse to me than brain surgery, but maybe it's because I know I can make it through it.

This day last year was my Longest Day. It was the scariest, most painful day of my life and I know I'll never forget it as long as I live. Right about now, I was finishing up my "stim test", where each electrode on my brain was reverse stimulated in turn to see what would happen. The doctors would press a button and my hand would jerk, or my eyes would move or my tongue would stick to the roof of my mouth and I couldn't breathe. Each time I heard one call a set of numbers to the other, I would wait for the shock and pray to God that nothing would happen. They were looking for my motor strip and I wanted so badly for it not to be under my seizure origin point, what they had come to call "the birthmark". I sat in my hospital bed, clutching the small, stuffed dog that my parents had gotten me in the Mayo Clinic gift shop. I was so scared. I focused on the sign my sister had made me that hung in my hospital room: We Love Our Erica. I traced the patterns with my eyes, drank in the colors and tried to stay calm.

In an hour and a half, my surgeon would come in and tell me that the birthmark was not on my motor strip, but right up against it. I was a candidate. I exhaled with my whole body, my whole spirit. I was a candidate. He told me that I could have the surgery, but there was a chance I would lose a good amount of sensation in my hand - I would have a hard time knowing how much pressure was needed to hold a fork, being able to recognize the shape of my wallet in my purse by touch. There was a chance I would lose some speech, some short term memory, though it wasn't very likely. "Do you still want to do it?" I paused for only a moment, because what stood firmly in my mind was that nothing had gone wrong yet, so there was no way it would start now. I lifted my right hand, covered in white tape to hold the IV in place, to the plastic table over my lap and signed the consent form.

Not until about 4pm was I finally brought down to the operating room. I remember a cleaning woman in the elevator as I was rolled in by a nurse. I said, "Hi, how are you?" as cheerily as I could. She looked startled but then smiled. I tried to be brave in the pre-op room among dozens of other patients in blue and white polkadotted smocks, lying in rough, white sheets on a plastic bed. It was easier the first time, when I didn't know what would happen, when I had no idea what I was getting myself into. Somehow, this time it was terrifying. A couple nice doctors, nurses and techs stopped by to explain a few last details, but I didn't care about the information, I just wanted their smiles and calming voices. A few layed hands on my shoulder or foot, and just a simple touch like that brought a sliver of peace.

The OR was brighter, more sterile, more ominous and more lonely than I'd remembered. Cindy wasn't there this time; she'd placed electrodes on my scalp for my monitoring the day after Thanksgiving and the grid on my brain during my first surgery, but since they were removing it, a much less delicate process, she was somewhere else. I didn't know anyone there. It was like the first day of kindergarten: terrifying and, as yet, the biggest day of my life. One man in blue scrubs came closer and smiled through his mask; he said Cindy had told him to take good care of me. I relaxed a little as he held my left hand and someone else took my right while a clear mask was lowered over my face.

I try to forget what happened when I woke up in post-op recovery. I try to block out the pain that was so terrible I screamed; the way I writhed on the bed, the bright light that stared me down when the doctors made me open my eyes, their hushed voices when I sobbed that my pain was a twelve and begged them to help me. That scene is burned into me. It felt like an eternity as the hysterical crying I realized was my own melted to a pleading whimper. This hadn't happened after my first surgery. Couldn't anyone help me? What went wrong?

Last night it came to me like it sometimes does. A wave of remembered trauma, pain, relief and gratitude smashed over me, its full force against my mind. Wet tears slid down my face and as my rock held me in his arms, they turned to sobs that wracked my body and tore sounds from my throat despite my efforts to stifle them. I could see the wet collecting on the collar of John's blue shirt, turning it dark and shiny. I began to calm down at the insistence of my nose that it needed a tissue. I went through three before I could breathe steadily again. I clutched John's back and laid my head on his chest. "It's okay, baby, it's gonna be okay. You've been through a lot." I have.

Thank you to everyone; all of you who have been here for me, with me. Thank you, God, for the blessings you've given me. Thank you, John, for listening, understanding and supporting me every day. Thank you, mom and dad, for holding my hands; sitting quietly when every little noise hurt; making up stories when I was scared; spoon-feeding me; forcing me to sit up, stand and walk despite my dirty looks and petulance; fixing oatmeal and fruit every morning; re-teaching me how to knit so I could regain the function of my hand; making me take naps even when I didn't want to; taking me on slow walks around the block in freezing cold January weather; but most of all, teaching me how to live the kind of life that makes me happy and fulfilled.

John asked me what I want to do tonight to commemorate my anniversary. I haven't decided yet whether I want to go out and celebrate or stay in and remember. Either way, I'll remain, as always, eternally grateful.

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.

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

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.

Guest Post

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

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.

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."

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!"

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.

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.

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.

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