Red Bottle

The little upside-down triangle shaped bottle opens at the bottom. While every other prescription bottle on my dresser is yellow-orange with a white screw cap at the top, one red bottle sits atop its screw cap in a perpetual headstand. It's appropriate that this bottle is red, because its contents are for emergency only. I was given the prescription for it at the ER on New Years' Day, when I left a lunch gathering at my aunt's to go to the nearest hospital. I had gone into status, having seizures one right after the other, pausing like a chain smoker, only long enough to light up the next one. The doctor gave me some Atavan, which made me loopy and knocked me out, but it worked and the seizures stopped. She sent me home with a script for a few more in case it happened again. So far it hasn't, but it's definitely nice to know that if it does, I won't have to sit in a waiting room between a guy hacking his lungs out and a girl bleeding out her eyes and ears as my arm jerks about uncontrollably. Maybe that's a little over-dramatic, but still, next to grade schools and college dorms, hospitals are the easiest places to get sick. And also they smell bad and are exceedingly expensive, especially when you're unemployed and are in no position to hold down a job yet.

Tomorrow we leave on our Big Sigh of Relief Vacation to the Bahamas! I definitely believe that we've earned a little vacay time after the tense anxiety of the past five months. As per usual, I left my packing until the last minute, but if summer camp taught me anything, it was how to pack for every possible situation in one small suitcase in roughly ten minutes. I set out the things I'll need in the morning in a couple small piles so I know where everything goes and don't forget anything. One pile is a gaggle of pill bottles that sit on my dresser, between my door and my nightstand, where I keep a glass of water. After washing my face and before climbing into bed, I took my nightly line up, selecting what I needed from the thirteen or so bottles there. Tomorrow morning, before we're picked up at eight by my godfather (whom we'll be thanking with a few Tupperwares of leftovers), each bottle of medication that I'll need will be dropped into my purple backpack to spend the next ten hours bonding with my computer. It's funny though, because looking at that red bottle of super-seizure pills that make me nauseous and a little off in the head makes me smile just a bit. They're still coming with me, but they, along with the other handfuls, might not be necessary anymore. I might, just possibly, never have another seizure. I might, just possibly, be on a third of the epilepsy drugs I'm on now this time next year. It's not likely, but someday I might even be off pills. I can't actually imagine that. I can't imagine a life without medications, frequent doctor trips and an intimate relationship with Walgreen's pharmacists in both Minnesota and Colorado, where the "Cheers" theme song plays every time I walk in. It hasn't sunk in yet that all of my follow-up tests this week and last were clear and, more importantly, the implications of that. It's pretty amazing. I think that warrants some well-tanned cabana boys carrying virgin daiquiris to me on the beach, don't you?

Thank You Prayer

March 28th, 2011 10:30pm

God,

Thank you. Thank you for Your blessings. Thank you for giving me what could become a whole new life. I am so grateful to You. None of this really feels real yet. I feel like this is one of the biggest days of my life so far and I’m not savoring it the way I should. I don’t really know how I feel right now, maybe a little confused and grasping as the last bit of the day slips away before I can figure it out. God, please help me to sort out my feelings. Please help me to accept the end of my seizures, which have defined me and set me as other for my whole life, and help me to accept and understand that my surgery worked, that I don’t have seizures anymore! Thank you.

I’m a little scared that I’ll end up like the woman who wrote that she was seizure-free for fourteen months when her seizures came back a lot worse than they’d ever been. Please, please don’t let that happen to me. That would be so awful, so heartbreaking. I don’t think I could do this surgery again. Rather, I could with Your love behind me, but it would be so much harder. But this news is indeed good.

Please look over my family. Please make sure they know how incredibly much I love them and let them sleep well tonight.

All this I pray in Your holy name,

Amen.

It Hardly Feels Real

I still can't believe it. I'm seizure-free. The doctors were clear that a clean EEG didn't mean I was cured, but it's a good sign. A really good sign. There is no abnormal, epilepgenic activity in my brain. The doctors also talked about the pathology report on the chunk of brain that they took out. Apparently it was a cortical dysplasia that had bothered me for so many years. What that means is that when my little fetus brain was forming, a few neurons missed the train and ended up growing in some incorrect fashion, forming what we've been calling "The Birthmark", and causing me to have seizures. And now I'm quite sure The Birthmark is lying in a biohazard bag in the back of a truck headed toward biowaste heaven.

Wow. I mean, really, wow. I can't get over it. I never thought this day would come; never truly thought it possible. The neurologist said that in July, as long as I'm still seizure-free, I can start to wean off one of my three seizure meds, and if I'm still clean next January, a year from the surgery, I can get off another one! He says I'll more than likely always be on at least a small dose of one medication, just to be safe, but that's fine. In the mean time, though, I have good news and bad news: the good news is that I can drink decaf again! He thinks that coffee won't end up being any kind of problem, but to start slow and keep it at decaf for now. The bad news: no drinking for a year. A YEAR! I was hoping to have a little somethin'-somethin' to celebrate tonight, but I guess that'll have to be sparkling lemonade in a martini glass. Bummer, but again, I'm okay with that. One year alcohol-free for a lifetime seizure-free? No contest.

"Wow", "phew", "wahoo!" and similars are the only things I've been able to say to express this... this whatever-it-is, wordless phenomenon. It hasn't sunk in yet. I have a new life. Like, seriously, a new life. It hardly feels real, but somehow, magically, it is.

Follow-Up w Surgeon

I'm at Mayo for my last day of follow-ups: seeing my doctors to get the results of my tests last week. I just saw my surgeon and got amazing news: they didn't find any seizure activity left in my brain!! This is the news I've been praying for - it couldn't be any better. More to come, but thank you all from the bottom of my heart for your prayers and good wishes!

Recording

The past week or so, I’ve been writing down my memories of the hospital, the surgeries, each one a vignette caught in type like a firefly on fly paper. I sift through the foggy recesses of my mind, drug- and pain-induced clouds concealing the whole picture but letting one memory at a time float to the surface like the answer in a Magic 8 Ball. The scene is revealed to me and suddenly I’m right back there, lying in bed, my thoughts oscillating between the present and the future, fear and excitement.

I want to write, I want to record everything I felt, saw, smelled, touched, pin it down before it fades away, but it’s not easy. I shake the Magic 8 Ball of my mind and a memory floats up in response, and as promised, I can see, feel and smell, but what I find is not always good. So many things there were easier when I didn’t know what was coming. I waltzed blithely (or more likely crawled blindly) through each decision, toward each procedure, knowing nothing about the fear and pain that waited on the other side. That made it easier at the time, but now when I go back, the fear and the pain stick out. I don’t like remembering those parts. When I put myself back there, looking through my same eyes, the strong, courageous heroine I’m proud of now is a scared little girl whose head hurts so much she can hardly move.

It’s hard to remember those things, it really is, but I need to record them. I force myself back there and I write down as much as I can, because even if no one else ever reads it, I want my children to know what their mom did for them. I want them to know the strength inside themselves and believe that they can trust it.

Love Cocoon

"Listen, there's no traffic on the lake", mom noted.

It's that in between time where the ice is too thin for trucks, ice houses, snowmobiles or pedestrians, but the lake isn't open enough for boats or jetskis. Swimmers won't venture in until late May, and even then they'll be in wetsuits til June.

Mom and I sat at the near end of the long, wooden table whose leaf was in from the fundraiser we hosted last weekend. The rhythmic whoosh of the dishwasher played backup to Corinne Baily Rae as we contemplated the everything and nothing of life between conversations. Dad had already left to watch basketball in their bedroom, but the dampened sound of an announcer punctuated by shoes screeching on the court let us know that he was still nearby.

At dinner, after discussing Elizabeth Taylor, Marilyn Monroe, and the twenty first century paparazzi's role in the death of the untouchable Hollywood star, and before going over the HBO specials mom wants me to set up on the dvr when we get back in town, the three of us put together a list of questions to ask the doctors on Monday. As they each gave their opinions on what to add to the list I'd already written or how to re-word what I'd said, I managed to only interrupt to contradict two or three times and didn't roll my eyes once! I'm learning patience and calm.

I've learned a lot since moving back home; I can't believe it's almost time for me to leave. This is likely my last night at the cabin. Of course, my parents remind me every other day that I could stay and can live with them as long as I want, and that the cabin is empty all week and I could stay there if I wanted space, and every time the topic of my move date comes up, mom says that we should wait and see how I feel when we get back from the Bahamas. I don't know if there's ever going to be a perfect time to move back to Denver; I just have to leap and have faith that I'll land without spraining an ankle. It's gonna be hard leaving my little love cocoon here, but the time is coming for me to break into a butterfly and fly away. A butterfly with a big, bold stripe down the middle of its back.

The image of a butterfly floated through the everything and nothing in my mind, and I answered, "I know, it's nice".

Lip Zits

I have a zit on my face. A really blatant one, right on my upper lip, taunting me. Lip zits are by far the most painful to pop. I mean exceedingly painful, but I was determined. Leaning forward to see it better, I placed one fingernail on each side and pressed through the pain until a chunk of white puss shot out and landed on the mirror. I kept going, wanting to make sure there was nothing left in the raised hole I'd created, and pretty sure there was, but I was unable to get it.

When I got out of the shower, the zit's ground zero hole was still all red and surrounded by pink. It needed to be hidden. I tried to put heavy-duty concealer on it, layer foundation over that and then top it off with some setting powder, but when I stepped back from the mirror, it just laughed at me. The red was covered - for the time, at least - but the bump of it stuck out so far that it caught light from the lamp across the room and cast its own shadow over my Chapsticked lips. I had been defeated.

In the past week I've broken out on my face, my chest and my back. It's gross. What's bothering me is that back zits have a nickname: bacne (pron: back-nee, like acne), but chest zits are totally left out. No nickname for the little red bumps that preclude me from wearing most of my shirts as I have an affinity for scoop necks.

Wednesday I was supposed to go back to Mayo and see my neurologist, who would tell me the results of the tests I'd had the two days before. Wednesday I was supposed to find out if there's still seizure activity in my brain or not. Wednesday, seven inches of snow covered a layer of ice that spanned the width and length of every street and highway in town. And out of town, for that matter. We had planned to leave the house at ten, giving us plenty of time to get to the one-o-clock appointment since it's only an hour and a half drive to Rochester, but the snow was still falling, thick, white flakes dancing quickly through the air. The tv said that the storm was moving South, toward Rochester. The driving conditions were growing more dangerous by the minute; it would be crazy to attempt a trip to Mayo.

I called the neurology office to see if I could reschedule my appointment for Monday, when I was planning to come down to see the surgeon. Would that be okay? Did he have any openings? I was so disappointed. I wanted so badly to see the results of those tests, to know if the surgeries worked, to know what was happening in my body. I had mentally prepared myself for whatever answer I would get; or at least prepared myself not to fall to the ground crying with either grief or gratitude. But no, that would be another day. I had all of this energy and emotion stored up and ready to go but nowhere to use it. The adrenaline evaporated, leaving me sapped, disappointed and angry. I so rarely get angry; I hate that feeling. I was angry at the snow, at the ice, at the world for keeping me scared and anxious.

The office called back at about eleven with a new time for my appointment, which they were able to get on Monday. The negative emotions inside of me were exhausting, but I mustered up a genuine thank you for all of her help.

I spent a lot of the day sleeping, reading and watching Hulu on my computer, and by dinner I was okay. I'd accepted that I was going to have a few more days of uncertainty. I knew I would be scared and impatient, but I learned how to deal with that in the months before the surgeries and I could do it again. So now I wait.

Since middle school, I've learned that stress has a funny (not ha ha funny) way of bringing friends with it, most of whom cause their own stresses. Specifically, I'm referring to zits. Lots of 'em. I hoped that they would go away once I heard definitively if there was any seizure activity still in my brain, but now I have three more days for my body to express how it feels about being in limbo by turning me into Pizza Face.

Wait, there's another undergrounder surfacing on my lip...

Snow Day Update

Appointments are being resch for next week, cobra got back to me with next steps (a good sign), two over easy eggs on top of hash browns and covered in hollendaise are preparing to wreak havoc on my digestive system but were worth it, there's still glue in my hair, the snow is finally starting to slow down, and it's time for me to take a nap. That's all for now!

Snow Check

Well, we've gotten about six inches of snow so far, sitting atop a layer of ice, and it's still coming down, so we've decided to take a "snow check". Driving conditions are far from safe, so at the behest of my parents, I called the Mayo neurologist's office and asked to reschedule. I haven't heard back yet on the new time/date, but should in the next hour or so.

I have to say that I'm pretty disappointed. I've been mentally preparing for this meeting and I really want the results of my tests. This morning as I was putting on my eyeliner, my hand felt strange, and it scared me. I don't know if it was a seizure or if I'm imagining things. I hate the fears and uncertainties going on in my head, the thoughts spinning around and around wondering if maybe this didn't work. I just want answers. That's all. I want to know if there's still seizure activity in my brain. This limbo is draining me. I'm remembering what it felt like back in November and December, being paralyzed by the unknown.

A thought flitted into my head, just for a moment, asking what there is in my life that I can control, and my automatic response was food. If there had been a mirror before me, I would have seen my face contort in disgust at my answer. I'm glad that that was my reaction. It's comforting to know.

When we decided definitively not to drive to Rochester, I could feel my mom seeing the disappointment in me and how sad it made her to watch me. Being a mom, she's good at sensing those things and knowing how to fix them. Maybe it's not a cure, but certainly to dampen the symptoms, she suggested that we walk to the diner a few blocks away and have breakfast. I intend to get something greasy and unhealthy that will taste amazing going down but will probably make me feel sick the rest of the day. I'm okay with that.

Hot Cocoa

7:30am, Tuesday, Day 2
I watched as the hot cocoa mix clumped and floated on the surface of the hot water, brown bubbles with chunks sliding down them stuck to the side of the cup. I left the cup on the buffet while I searched for the little black stir straws that ended up being right under my nose.

The cocoa mix swirled and sank as I stirred, powder dispursing and dissolving in the water that was still to hot to drink. I grabbed a top and popped it onto the styrofoam cup, first pressing down with my palm and then tracing the edge with my finger to be sure it was locked in place.

Dad carried my hot cocoa as I hefted my backpack and purse onto my shoulders and my overnight bag into the crook of my left arm. It had rained all through the night and a cold mist remained as we made our way to the car. I threw my bags in the back, climbed into shotgun and turned the seat heater on high.

Something in my eye was bothering me, so I flipped down the mirror to check it out; I found a clump of macara floating on my eye, a sailor overboard from the ridge of my lower right lid. I stuck my finger in my eye the way that used to gross me out as a kid when I saw grownups do it, and wondered, not for the first time this morning, why I'd bothered to wear makeup when I was about to get glue in my hair and wasn't even planning to see anyone I knew. Force of habit, I guess. I had a feeling that if I had long hair, I would've skipped it.

We pulled into the parking ramp with 20 minutes to go, and got in line for the elevator that would take us to the subway level, from which we could reach the next elevator bank to the seventh floor of the Gonda building - neuro.

Dad waited behind me while I checked in at the EEG desk. I was told they'd call my name when they were ready for me, so we walked through the maze of chairs to an empty section in the back where we could set our drinks on a side table and split the newspaper after I turned my phone on silent.

Day of Reckoning Eve (as in the night before)

Last night I stayed in a cold hotel room a five minute car ride from the Clinic. When I woke up with a kink in my neck, it only made sense that I was going to a day of hospital tests. Tonight I'm back home, watching yesterday's new episode of Castle on the DVR in the living room, after which I get to go up to my own bed. But tomorrow I have to go back down to Mayo; and this time it's not for tests. The sweet smell of flowers in my room, the rain on the window panes, they lull me into a false sense of safety, of on-the-other-sidedness, because tomorrow is not just another lovely day in the neighborhood; tomorrow is the Day of Reckoning.

At one pm, I will go in and meet with the neurologist I've been working with at Mayo, and he'll tell me the results of the tests I took yesterday and today. All three neuropsych, EEG and MRI were standard and passed uneventfully, but the results will tell us if the surgeries were successful. The EEG is really the one I'm anxious about, since it's the one that shows if there's still any seizure activity left in my brain.

My head hurts from having electrodes glued on and taken off of it, being compressed with foam to keep it still during the MRI and finally from me picking glue chunks out of my hair. A couple leads went on my scar, as it travels down a good length of the middle of my head, where a few electrodes needed to go. Those have been particularly difficult to get glue off of because the picking, scratching and tugging really irritate the seam holding me together and the traumatized scalp around it.

Since the day I decided to have this surgery back in October, it's never really occurred to me that it might not be successful. Obviously I knew it was a possibility, a fairly large one, at that, but deep down, I always assumed that no matter what, no matter the odds, of course it would work. Now I don't know. The past week or so, I occasionally get a light or weak sensation in my right hand, and it kind of reminds me of a watered-down version of the feeling I used to get during a seizure. Maybe I'm just making it up, my peppy, positive imagination doubting itself and running the other way, or maybe it's just a remnant of the functionality and sensation I lost when the resection was completed. My sister reminded me today that even if it turns out to be seizure activity, the doctors did say that in the first couple months, it's not uncommon to have a couple seizures as your body figures out what the hell you just did to it, which did help calm the funnel cloud of thoughts in my mind and lift the growing weight on my chest. Clearly it wouldn't be ideal, but the fact remains that I've been seizure-free for two months. Even if there is seizure activity left, my epilepsy has improved dramatically. That's my chin up talking, but I'll hold on to any silver lining I can get my hands on until my knuckles are white.

Hot Cocoa con't

A woman in dark blue scrubs called my name over the speaker, surprising me by pronouncing my name correctly. Leaving my bulk of coat and scarf with my dad, I walked down the one straight aisle amid the waiting room chairs.

The EEG tech escorted me over the threshold that separates the patients from the people who hold their hands. She chatted as we walked down the echoing hallway with its linoleum floor, turning this way and that, each door we passed eliciting a, "Just a little bit farther!".

Just a little farther, we came to a room with two chairs: a green one for my coat and purse and a black one for me. As I sat, my hat stuffed in my bag, the tech draped a hospital gown over my back and shoulders to protect my zip up sweatshirt from the glue. I let her know that the left side of my head was still pretty tender but for the spot toward the top that's numb. I said I was okay with having a little numb spot on my head after everything else had turned out perfectly.

For the next thirty minutes, we talked about life, families, sisters, nieces, nephews and grandchildren. She was as careful as she could be as she applied the electrodes to my head, but it still hurt. I almost asked her to hand me my Tylenol from my purse, but figured I'd wait til the test was done.

With a little help, I got up from the chair and walked a room with a bed next door, her following behind me, carrying the leads that had been so diligenty applied.

I sat in a chair by the bed for the first part of the test: seeing my brain functioning. I looked at pictures, read out loud, hyperventilated for three minutes and looked into a strobe light as it grew faster and faster. Finally the pounding light stopped and I was told to lie down on the bed and sleep for half an hour so they could get a baseline. Sleep? Music to my ears! I all but leapt into bed and snuggled under the blankets she laid on top of me. In less than two minutes, I was fast asleep. (Ah but to be asleep right now! Alas, I'm waiting in the lobby for my ride.)

Half an hour later I was awoken, and retuning to my chair, the tech took the leads and stickers off my head and gently rubbed out most of the glue with something that smelled kind of like nail polish and made me cough when I inhaled it.

Dad wasn't in the waiting room where I'd left him, but both of our coats were... The phone rang three times as I held it to my ear before, "Hello!"

"Where are you, dad? I just got out."

"Oh! About a hundred feet away. You can probably see the grey back of my head if you turn around."
I looked around, sweeping the ocean of chairs, all littered with grey backs of heads, before he stood up, turned around and waved at me. A smle spread across my face; what was he doing over there and why did it seem like a good idea to leave our stuff behind? I gave up trying to understand his lack of common sense long ago.

As he walked over, I offered, "Wanna get some lunch?"

Follow-Up Day One - Neuropsych

The elevator doors opened and the light next to the button marked "SL" switched off as we stepped into the subway level of the Mayo Clinic. A wave of nostalgia swept over me as I took in the silver block letters that spelled out "Gonda Building" above the streams of people coming and going like ants in an ant hill. The low-ceilinged hallway opened into a large, open atrium, the sound of a woman singing along with a piano echoing off the tall windows, grand staircase and hanging sculpture. I remembered it like I'd only been there yesterday, but my vivid recollection included just the building, not the testing and not the surgery, which still some days try to bury themselves in the sands of my mind like the brightly colored coquinas on the beach.

My mom and I checked in and made our way to the first bank of elevators, a hanging sign in the Clinic's signature font noting it as service to floors eleven to eighteen. I pulled the folded itinerary out of my purse and double checked - 11:45am, Mayo Building, 11th floor West, Psychology. Today was to be a repeat of the neuropsych exam I had three days before the first surgery, just over two months ago.

The waiting room looked like any other, groupings of stiffly-padded chairs in various shades of mauve and hunter green, spaced just far enough apart to alllow for a degree of comfort and the option not to listen to another family's conversation while still being space-effective.

I sat down with the clipboard I'd been handed by the woman at the desk and began to check box after box after box with a no/yes ratio of about five to one. For the first time ever, I got to check yes for brain surgery under the "Have you had:" heading. I made my way through four pages of multiple choice questions, short answers and consent forms while a woman somewhere behind me coughed like there was no tomorrow. I made sure to saturate my hands and arms with antibacterial gel from the Costco-sized pump bottle at the front desk when I handed back my clipboard.

The neuropsych evaluation was an exact copy of the one I took two months ago while my skull was still fully intact and my body without titanium parts. For four hours, I listened to stories and lists of words and repeated them; ordered strings of numbers and letters before reciting them back to the proctor; viewed pictures for ten seconds and reproduced them from memory; found patterns in multi-colored cards; listed all of the words starting with c as I could in one minute; gave descriptions of words, likely sounding quite pretentious as I did because of my uses of "which", "such" and myriad SAT vocabulary words; and finished with fifteen minutes of math.

At the three hour mark I was given a break to stretch my legs, drink my Snapple and check the emails on my phone, but when we left at four-o-clock I was exhausted. This was the longest I've had to concentrate since the last time I took the test, and the little stamina I had left took me stright to the cold room at the Marriott down the street and dumped me into bed. The covers left some to be desired; there seemed to be a thicker layer missing, but it didn't keep me from enjoying a two hour nap.

Tomorrow is the EEG and MRI, the results of which I'm looking forward to seeing, but I won't be given any until my appointment with the neurologist Wednesday and the neurosurgeon next Monday. Until then, there's no use in worrying, so all that's left is to watch Bones reruns on my ipod and fall asleep.

Parking Structures

I wasn't sure what I'd expected, but when we reached the streets of downtown Rochester, passing the hotel we stayed at the three nights before my first surgery and turned into the parking ramp opposite the Mayo and Gondo buildings, I felt nothing. No ghost of anxieties passed crept into the car to haunt me; my heart rate was steady and my breath deep and calm.

God love my mom, but she's the most nervous person I know when it comes to finding a parking spot. Up and up we spiraled, passing open spot after open spot, each one sufficiently wide and a perfectly fine candidate, but still we pressed on. The parking ramp switchbacks were starting to get to me, as was my mom's infuriating ability to just park already. I was nearing my wit's end when after passing three more open spots near the nineth floor elevator, she proceeded to the far end of the row and parked.

"Why did you do that? There were three perfectly good spots right by the door", I asked heatedly.

Her simple response: "Because I knew it would irritate you". She smiled and after a moment's deliberation, I laughed.

My New Haircut!

Follow-Up Coming Up

Tomorrow I go to Mayo for the beginning of my follow-up testing. The alarm on my purple Droid cell phone is set for 8:30am, giving me an hour and a half to shower, get dressed, make myself look presentable and have some breakfast before mom and I drive down to Rochester. The next three days and the following Monday will be tiring, stressful and full of nail biting.

Tomorrow is the neuropsych exam, the results of which I'm not worried about; I'm only thinking that I'll likely glaze over half way through it since it's a four hour exam, which is a much longer stretch of time than anything I've had to do since surgery. I'll bring a snack and it'll be fine, but last time I went, I got to bring a sixteen ounce latte with me.

Tuesday consists of the test I'm most worried about: the EEG. The MRI is on Tuesday as well, but the EEG is the test that will show if there's still seizure activity going on in my brain. The EEG will show us if the surgery was successful.

Wednesday I meet with the neurologist I've been working with at Mayo, and the following Monday, I see the neurosurgeon. Those days are when I'll get the results of the tests and have the chance to talk about options for my future. I haven't thought of questions to ask yet, but I'm working on it. If you have any ideas, please let me know.

I was talking to my mom tonight and she said that she's nervous to go back to Mayo because of all the feelings it will stir up as she walks the same halls she walked between the hospital cafeteria and my bedside. She asked me if I felt the same, but honestly, I don't. I think my surgeries were a traumatizing event for my parents, but a transformational one for me. Still, I'll let you know how we fare back in the Gonad - I mean Gonda - building.

Haircut

"I have to say, I'm a little nervous. I've never done this before." I handed my jacket to the hairdresser and stuffed my hat and scarf into my purse before setting it on the hair-covered floor with a wince and climbed into the chair. My heartbeat pounded in my ears as my eyes flitted back and forth between the long curls on one side of the Mississippi and the short spikes on the other.

I remembered my little sister's words from the day I told her that the doctors would have to shave half of my head: "Oh, Erica, my heart is breaking for you. If they told me that, I wouldn't do it". Needless to say, she's very attached to her hair, maybe a little more than is healthy, but right then, my heart was breaking for me, too.

The executioner held up a chunk of the long hair that I had crafted perfectly that morning for the last time, "Okay, this is going to look like a lot, but we have to get this out of the way before I shape it". I watched in horror as the scissors closed in, swimming at top speed through the air like Jaws toward a skinny dipping coed; I could hear the ominous theme song. Closer and closer they got until I could see the sharp teeth on their serrated blades. In slow motion, the scissors devoured the lock of hair, determined to be brave as it accepted its fate. I dropped my eyes, lacking the masochistic streak needed to watch.

The hairdresser stepped back, scissors hanging at ease from one finger, and lifted and pulled at different pieces in turn. "What do you think about doing something asymmetric?"

No, thanks. "Um, I'm not sure. What do you mean? I don't want something too...", I searched for another way to say unfortunate-looking 80's hipster, but came up empty, "yeah. I don't know."

He deliberated on my hair another minute before bringing the scissors to attention and digging in, cutting and shaping an asymmetrical creation. I watched with increasing skepticism, my fight or flight reflex kicking in when he started to snip at the hair on my left side that I'd been working so hard to grow out for the last two months. I bit back the, what the hell are you doing? and swallowed my anxiety. Suddenly he stopped, again stepping back and observing my head with the keen eye of a seasoned art critic. I looked in the mirror, trying to see what he saw, but all that stared back at me was half a head of super short hair and half a head of hair that reached half way down my ear. I waited for him to keep cutting, but he just looked at me, "What do you think?"

Bile rose in my throat as I realized that he intended to leave me this way, intended to let me walk out into the world looking like a sixteen year old boy who'd lost his skateboard and whose friend had cut his hair in an act of parental defiance. "Yeah, I think this is too much for me", I attempted to deliver in a calm voice.

"So you want me to just make this side equal to that side?", he attempted to deliver in a calm voice, though I could hear the disappointment laced with disdain that dripped from it. Clearly I was quite less than cool; even straight up lame.

"Yeah", I replied a little sheepishly. Apparently "yeah" was the word of the day - a noncommittal way to begin a contradictory statement. As in, yeah, this is hideous, or, yeah, I know you think I'm a loser for it, but I really don't care and I want you to make my head even before I throw up. I've never been good at telling hairdressers that I didn't like what they did to me, but sometimes it's necessary, and I was proud of myself.

When he finished, my hair looking as vanilla as possible, I took a last look at myself and said a little prayer that I would still get hit on by more men than women before hopping off the chair. I had to admit that the cut was pretty cute. Not something I would've ever done on my own, but for a necessity cut, it wasn't bad at all.

Bills, Headaches and Haircuts

The other night as I was carrying dinner plates covered in films of marinara sauce and small chunks of meatballs next to torn pieces of lettuce that couldn’t stick to a fork, I said to my parents, “You know, sometimes lately I forget that I just had brain surgery”. Despite my yo-yo rollercoaster mental health, physically I’ve been feeling pretty great. I’ve been active, getting out of the house almost every day, taking showers and doing my hair, writing, reading, not taking naps. As nice as it is to feel better, I forget that I just had brain surgery, and have been pushing myself a little too much. Yesterday I paid the price for it, spending the majority of the day in bed with the worst headache I’ve had in weeks. My mind might have forgotten, but my body sure reminded it. I made it through probably six episodes of Lie To Me - one on the tv downstairs as I ate my Fruity Pebbles and the rest in bed after I decided that bed was a better idea than trying to function in the real world. Throughout the day, I took a few naps and more Tylenol, but no oxycodone. I thought about it, but opening the dark orange bottle and swallowing the little, white pill felt like too much of a step backward. Maybe that’s silly, but it’s what was going through my head.

Today I went out, all dressed up in a skirt and high-heeled boots, my hair shiny and crafted into perfect, light curls and waves. Adding a pearl necklace and silver earrings, I felt pretty, fashionable, classy. Tomorrow, I’m getting my hair cut. It will be a sad day. The long, dark brunette mane that still graces the right side of my head, neck and shoulder will be cut off and matched to its sister hemisphere: three-quarter inch spikes that grow in every direction. I made the appointment an hour ago, and part of me is regretting it already. I would’ve waited for another week, but Monday I go to Mayo for my follow-up appointments, one of which is an EEG, and getting the glue out of long hair takes days, while I’m guessing short hair is much easier to rid of gooey, blue chunks.

I woke up this morning with a headache, and though it’s gone away, I think it would be wise to heed its warning and take a nap.

FM

When I was fifteen, finally holding my learner’s permit and looking at the driver’s side door with a mixture of longing and fear, my dad took me driving. I hated driving. I was bad at it - really bad at it - and kept barely missing parked cars and pedestrians since every turn I made was either too wide or too narrow. It was exhausting! I knew it was a necessary evil and that one day I would be able to get in a car and drive around town without even thinking about it, but right then I was filled with self-doubt and loathing.

Every day, he would pick me up from swim practice and ask, “Do you want to drive?”

I paused, knowing he wanted me to say yes, that I should say yes because I desperately needed the practice, but I could feel the anxiety already welling up inside of me. A rock wedged itself into the pit of my stomach and my chlorine-saturated armpits started to sweat. My heartbeat matched what it had clocked after a 50 yard sprint an hour ago. I wiped my clammy palms on the team-logoed sweatpants I’d pulled on over my wet swimsuit. I can do this. No, I can’t. Yes, I can! No, I can’t! I don’t wanna and you can’t make me!!

“No, dad, I’m good.” My heart sank even as it slowed and I dropped my eyes as I tossed my bag, backpack and purse into the backseat and climbed into the front. I was relieved that I didn’t have to perform the terrifying act that was dangerous to all parties involved and that made the thought of my Sweet Sixteen sour.

Last week, I started driving again for the first time since the surgery! This time, my anxiousness far outweighed my anxiety. My dad used to say that when he was a teenager, they called cars, “freedom machines”, or “FM”s for short, and for the previous week, every time I had to ask for a ride and every time he drove me, I couldn’t have agreed more. I love my dad, but despite his ability to get from point A to point B in a remarkably timely manner, I’m almost out of nausea pills.

Sunday night came, dark, cold and snowing lightly at four pm. I had choir practice and needed a ride. “Mom? Can you drive me to my rehearsal?”

“Sure, honey”, she answered, not knowing what was in store for her.

I paused, feeling a little like Calvin from Calvin and Hobbs, slightly mischievous as I asked, “Can I drive?”

“Sure, honey”, she replied, a bit slower this time, a small hint of knowledge that this might be a bad idea.

Excitement flooded me - at last, I could drive! Nine years after getting my drivers license, I really am a good driver and have never been in an accident with a car, a wayward pedestrian or a poorly-placed lamppost. My mom’s hesitation was born of the fact that it had been just over a week ago that I was able to walk down staircases by myself and take a shower without requiring someone in the house to make sure I hadn’t fallen if I was taking too long. Nonetheless, as we walked through the garage door and climbed in on sides that felt unfamiliar, each of us felt a flood of emotions that did not include calm or confident.

I turned the ignition and the car came to life, BBC on the radio (which she promptly turned off so it wouldn’t split my focus) and a purring beneath me. A thrill ran through me, an electric current racing down my arms and legs. My foot found the break and held it down as I shifted to reverse and looked behind me.

I took the longer way to my high school - the site of the rehearsal - keeping to main roads rather than the side streets I usually take, as smaller, residential streets hadn’t been plowed and were still icy. I figured my cautious mom was nervous enough without her newly-driving daughter navigating a treacherous, poorly-lit route.

Yes, we made it safely to the school, and as I put the car in park in front of the newly-redone entrance, I could hear her internal sigh. We made it, was written across her face. A wave of fondness and gratitude for her patience washed over me.

I can drive. I am a driver. I am not broken. Most importantly, I’m cleared to re-claim my FM!

Mourning a Loss

I miss coffee. I miss it so much. My terrible but wise decision to cut caffeine out of my life has left a gaping hole in my soul; an empty, black void that used to be filled with black liquid. I smell stale coffee, cold after sitting it its pot for four hours, and I'm sucked back into a world filled with vibrant colors and not a drooping eyelid in sight. I feel a gravitational pull toward the kitchen cabinet that holds those blessed, white, ceramic vessels, I want to watch the dark liquid undulate in the cup as it's poured into itself; a waterfall of a wakeful day to come. I dig my heels into the floor, though low on traction, to hold myself back and with great effort tear my eyes away from the scene.

I put the room-temperature pot and its cold coffee down, placing it where it belongs: the coffee pot, not my hand. I turn back to my cup of herbal tea, sitting innocently on the counter, waiting for me to give up, resign myself to my fate. The pink contents smell of hibiscus and are a poor substitute for the taste my lips remember from so many mornings with my breakfast, afternoon pick-me-ups, evening study sessions. Coffee has punctuated my life since senior year of high school, defining my hang outs, being a place where I can catch up with friends or catch up with a book, providing a safe activity for first dates when I know there won't be a second, and eating up an unnecessary chunk of my budget, among other things. Coffee has been my longest relationship, and while it had its dysfunctions - like making me have more seizures - we were happy. Boyfriends may have come and gone, but when I needed cheering up, I knew where to go; the open arms of lattes are always the right temperature: hot in the winter, iced in the summer. Fondness and sadness fill me with each memory.

Though still these days, no involuntary shaking since January, my hand feels empty. It feels the loss of a Dunn Brothers to-go cup, a Starbucks travel mug, a Colorado College Alumni ceramic coffee mug. There's a missing weight that leaves my hand empty, leaves my body wanting, leaves my mind uncaffeinated. I mourn the loss of an appendage I mercilessly hacked off with a machete and left to wither in a frozen gutter outside the Mayo Clinic.

We've Come a Long Way, Baby

Tonight was my first night out since the surgery and also my first opera! My dad has a habit of getting tickets for some kind of show and not telling anyone until a couple days before, yet every time being surprised and irritated when one of us says they already have plans. A week ago he told me that he'd gotten tickets to La Traviata, one of the most famous operas by Verdi about a courtesan (wayward woman) who falls in love with a man and their move to the country, tragic separation, and even more tragic reunion. Love, betrayal, a duel - all standard fodder for a romance novel or an opera. Clearly opera is more cultured, classy and includes music, but really the same underlying themes. It was wonderful. I got goosebumps half way through the second act, and when they saw each other in the third act, I almost cried. Our young formerly-wayward, now repented Violetta has tuberculosis, which, in the third act, leaves her weak, pale and lying on the floor by the time she hears that her Alfredo has come to her. A few songs and three additional character re-appearances later, she dies. At another time, I would wax on about the beauty of it, the sights, the sounds, the strong emotion that dripped off of each note as the music permeated the room, but it's 11:45pm and I'm exhausted.

So, the point is that we've come a staggeringly long way from 1853. Throughout the show, as Violetta's tuberculosis grows worse and there's nothing anyone can do to cure it, I kept thinking about how easily it could have been fixed today. "Consumption", as they called it then, is on the whole little more than a vaccine you get as a kid when you start school and never think of again. If you cough up blood, it's a sign to go to the doctor and get a swab test and a ten-day pill regimen, not a death sentence.

In 1853, I certainly wouldn't be here. I would have untreated epilepsy, which from what I learned when I was briefly off of medication as a kid, would most likely be generalized tonic-clonic seizures, not the simple partial that I've grown so accommodating of. I probably wouldn't be able to function as a full member of society, and there's certainly no way my parents would've been able to marry me off unless they were exceedingly rich and able to make it worth my future caretaker's time. Who knows, I might not have even made it to twenty five. But here I am. Five weeks after having half of my head taken off and the origin of my seizures residing in a petri dish somewhere, I'm sitting in bed under a yellow and white striped duvet from Ikea and about to stream season two of Lie to Me off of Netflix. Look what a hundred and fifty eight years has done to us. Medicine grows and evolves so quickly, and so constantly. I often take heart from that. In case this surgery doesn't work, something that will work is on its way, coming soon to a neuro office near me.

Typing With My Eyes Closed

The snow is melting. The table on the back porch, so recently covered in a tower of snow two feet high or taller, is now home to a wet patch of melting white the size of two serving dishes. I watch it through the french doors that separate us, the barrier between fifty degrees and eighty, and can almost see drops of water dripping, dripping, through the slated tabletop. The chairs, once hidden completely, are exposed all the way down to the seat. The mounds on their laps grow smaller by the minute, gravity working with heat to force their osmosis through the wide mesh to the snow-padded granite floor.

Inside, my nose is cold, but I've turned off the switch-on fireplace behind me. I put a hand on my nose to warm it, but the rest of me, for once in jeans instead of sweatpants, is just right. My eyes are drooping, tired from worrying about insurance and hurting from staring at a computer screen all day. Too much backlit reading. I should probably take a break soon. Maybe a nap. I haven't napped for the past two days. I've skipped my nap before, but always substituting some quiet time in bed, reading a book or watching tv on my computer. The past two days have been too busy. Today has been busy, too, but I feel the comfort of sleep coming over me; I feel myself being wrapped in a cocoon and pulled to bed. I'm hungry, I haven't had lunch yet and it's almost three, so I try to resist sleep, I try to resist the force that wants to lift me off my feet and carry me to bed. Which leftovers in the fridge would be the easiest to heat up and the quickest to eat? The turkey burger looks good, but it would really be better if I cut up a tomato and some cucumber to go with it. I'll do that later. Maybe that grain mom cooked that's supposed to be really good for you... I can't remember the name...

I type with my eyes closed, no longer able to force the lids to attention. My head lowers to the table, I'm typing upside down with my eyes closed... I'll spell check it before I post. I'm just so tired.

I haven't yet resolved the problem with COBRA, but I'm working on it, and with a friend who does HR law and a mom who's a litigator, I take comfort in the fact that I have good people on my side. It turns out that Aetna is the one who's in breach. In my Benefits Appeal to COBRA, I have to include that, but I also have to convince TriNet that I was incapacitated in January, which I was. Hell, I'm still incapacitated at times - like right now. Wow, dealing with this insurance is beyond stressful. I did some research and it turns out no other providers will take me because of my pre-existing conditions and the number and prices of name brand drugs I take. COBRA is really my only option until I get a new job that can give me health coverage. Good health insurance is my deal-breaker when it comes to finding a new job.

Mom and I worked last night on a draft of an appeal, which our friend edited and adjusted today. Tonight, I'll fix up the final draft and send it. Pray for me. I need this to work. If it doesn't, we have to take it to court, and if I lose... I can hardly think about it. I'll be without insurance. I need a nap. This stress is pulling all of my energy from me.

On a higher note, I can drive! Just as of a couple days ago. It feels wonderful to have the freedom of a car again. I still spend most of my time in the house, but even having the option of leaving makes all the difference. It's a good sign that I'm able to get cabin fever, it means I'm healing. I have my good days and my less-good days, I still can't sleep on my left, but overall, I'm on an upward trajectory.

Without a Paddle

I just got off the phone with COBRA. Apparently, they lost my payments for January, February and March. As of January 1st, 2011, they terminated my health coverage. The woman said that it's not uncommon for them to accidentally post payments to the wrong account, but there's nothing she can do. Now, unless I can track down each check, I'm up shit creek without a paddle. I can hardly breathe.

Best Decisions of My Life

Twenty five percent. If I'd found in my original research that the likelihood of a successful surgical outcome was twenty five percent, I wouldn't have done it. If someone had told me on October 23rd, "you'll have to have two surgeries, a hundred electrodes stitched to your brain, each one reverse stimulated to see what happens when parts of your brain are shocked, a full recovery will take a year, and after all of this, there's only a twenty five percent chance that you'll never have a seizure again. Ooh, and also, your idea of a comb-over? Not happening - half your head is getting shaved!", I wouldn't have done it. I think about that now, here on the other side of it, and there aren't words; I just shake my head and smile.

I left my job selling phone and Internet service for a start-up in Denver on October 4th, 2010. They were good to me most of the time, even if I was grossly underpaid, but as I sat in my cube that day, settling in for the long, bi-monthly day of getting yelled at and hung up on, something told me to run. Something, someone, within me whispered it urgently, Run!. It startled me; a sharp gasp jerked me upright and I strained my ears inward, wondering if I'd heard myself right. Did I really say that? More importantly, did I mean it? But I did, and I knew it. I'd known it for a while, but never acknowledged it. But now that I had, my feet started to itch and my body went on high alert as a current of adrenaline ran through it. My fight or flight reflex kicked in and immediately I needed out. The stale air was stifling, the smell of the office coffee on my desk made me want to gag, the tapping of worn out phone numbers being dialed, the sugar-coated yet determined voices of the other reps was an assault on my ears. RUN! My breath was coming in shallow and quick; I eyed the few personal items tacked to the cubicle walls, figuring they could all fit in my purse, and if I didn't forget my plastic, Starbucks travel mug, the four-inch platform stilettos I'd affectionately termed my stilts could carry me out in three minutes. GO!! "No", I whispered out loud - I knew I wouldn't hear it unless it was out loud. I couldn't just leave and not come back. I'm more responsible than that. I took a deep breath and calmly walked over to my boss, who was finishing a conversation with one of the new reps.

"Can I talk to you for a sec?"
"Sure, what's up", he asked, probably preparing to field a question about a client.
I looked around and spotted an empty office. "In there", I cocked my head toward it.
A suspicious look grew on his face but he followed me, closing the door behind us at my request.
Okay, Erica, go time, I readied myself. "I'm leaving". I said it matter-of-factly, not giving any excuses or sorry's.
He looked confused. "Okay," he started slowly, "did I do something?"
"No, not at all," I assured him, "you've been great. This just isn't the place for me anymore." I hadn't quite thought through my answer to that inevitable question yet, but that pretty much summed it up.
"Is there anything I can do to make you change your mind?", he asked hopefully.
I shook my head. He understood. At least, I think he did. We used to be friends, before he was promoted, and he knew that when I made up my mind, it would take an act of God to change it.

We left the office, and five long hours later - the longest my sales director was able to put off talking to me - I left for the last time. The voice inside of me sighed, contented, and I joined it. I didn't realize at the time that this was the first step toward one of the best decisions of my life.

Two weeks later, I zipped myself into the grey dress with the white piping that I'd bought a month ago and only gotten to wear to work once. The sun had dipped behind the Rockies and left the air an appropriate cool for late October. I buckled a thick, brown belt around me, wrapped a long string of pearls around my neck twice, pulled on a pair of high-heeled boots, grabbed a jacket and my purse and left.

I have a coffee cup I bought a while back with a cartoon of a girl carrying a pair of heels and says, "She packed up her potential and all she had learned, grabbed a cute pair of shoes and went out to change a few things". I felt like that applied to me as I got into my car, still covered in old contracts and slicks explaining the virtues of VoIP, and drove to Starbucks. I was going out to change a few things. I was going out to change my life.

Starbucks was warm and welcomed me in from the cold October night. I waved Stacy over from behind the counter and hugged her before asking her what I was drinking that night. Stacy likes to make up drinks for me, compilations of what she likes and what she thinks I'll like for the mood I'm radiating that day. That night, I was lost but determined and optimistic, so I got a highly-caffeinated something with toffee flavoring in it. I set up my computer in a corner near an outlet and booted it up while I waited for the drink to cool. I had no idea what kind of job I was looking for, but I knew I wanted to do something meaningful, something that would make a difference, make the world a better place.

I flipped through site after site, law enforcement, epilepsy advocacy organizations, various government jobs, but nothing stuck. Nothing inspired me the way that I wanted it to. But then something nudged me. Almost secretly, looking around to make sure no one saw me, even though I didn't know any other patrons in the store, I deleted the contents of the search bar at the top of my screen and typed in, "epilepsy surgery". I held my breath as the page rearranged itself into a list of informational e-pamphlets published by various hospitals, each one with its own stats (and own explanatory fine prints) claiming that they're the best.

I read through page after page of enthralling, terrifying, inspiring information. I could have a new life. It hit me, but I tried to ignore it, not wanting to give myself premature hope. I scoured each result, no matter how relevant, growing more excited by the word. I was a candidate. I could really do this. I looked at the Mayo Clinic site and saw the most amazing statistic I'd ever laid eyes on: there was an eighty to ninety percent chance that I'd never have another seizure. Why hadn't I done this before? It was a no-brainer - no pun intended. That's a lie - some pun intended. But seriously, what took me to long to do this? To understand how worth it this surgery obviously would be?

Right there, my drink finally cool enough to drink, the 16th Street Mall almost empty, Stacy still behind the bar, I decided to do it. I was going to have surgery. It would take an act of God to change my mind.

I ran up to Stacy and blurted it out - "I'm gonna have surgery!" I needed to explain myself quickly, as, "I'm gonna have surgery!" is a little vague, but thirty seconds later, I was hugging her so hard I'm sure I almost cracked a rib. I sat back down and composed a calm, matter-of-fact email to my family, informing them of my intentions. By noon the next day, I'd received many responses, ranging from, "Excuse me??!", to, "When did you even become interested in this? Have you thought this through at all?", to, "That's wonderful! I'm so excited for you!". Figuring I probably owed them a more thorough explanation - since, you know, they birthed and raised me and all - so I sat down and wrote out another, more emotional and thoughtful email to send them. Second try yielded much better results.

I went a month and a half believing that I had an eighty to ninety percent chance of never having another seizure after a small, minimally invasive surgery. I didn't bat an eyelash when talking about it because to me, it was no big deal. Now I laugh at how naive I was, but I'm grateful for it too, because the incredibly optimistic prediction is what carried me through the fear to the point where I was too invested to quit.

Thanksgiving brought my return to Minnesota and the beginning of my testing. I spent the night at the hospital with seventy six electrodes glued to my head, monitoring the five seizures that woke me during the night. I was released after less than twenty four hours of monitoring even though they had told me to expect up to four days. Fortunately, I was good at having seizures - and I shot-gunned a Red Bull, which helped.

I was called two weeks later and informed that there was now a sixty percent chance of success, and if I chose to proceed, there would be two surgeries as further, more exact, monitoring would be necessary. He also said that if they couldn't determine where the seizures originated from or if they could, but it was in a place where they could not operate safely, the second surgery would simply be a retrieval of the electrode grid and replacement of my skull. There was a forty percent chance that I would go through the whole thing in vain.

I told the doctor I would go ahead with the rest of the testing, since I would still be able to back out if I wanted. As I hung up the phone, I was devastated. Sixty percent. I wondered if I should even do it, if it was worth it if there was such a small chance that it would work. I sat in the dark dining room for a few minutes, mourning my twenty percent loss, trying to wrap my head around the news, wondering how to be up-beat as I told everyone while I was still so disappointed. There was too much going on in my head, I couldn't figure out how to verbalize it, I had no idea what my next move was. So I escaped up to the cabin and got snowed in for two days. More than two feet of clean, sparkling blankets of snow surrounded the house, blocking the doors, covering the roads. I ate frozen tortilla soup and half a beer. I healed the raw disappointment that tore at my heart and winded me, a punch in the stomach, and that made me doubt myself. I didn't know what my answer would be if someone asked me how I felt about the news or what I wanted to do. I couldn't answer them, because I didn't know. I stayed in my cocoon, relishing the quiet, the solitude, until finally, the snow slowed, lightened, and sputtered out. It was time for me to go home.

Only a day after getting home, I found that everyone - my sisters, my friends - assumed I was still going ahead with the surgery, no matter the new information. I was young, I was healthy, I didn't have a job to get back to, and I had somewhere to stay and be taken care of through my recovery, no matter how long it took. They were right. I was scared, I wasn't sure of myself, sure that I could really do this, but their certainty, the conviction in their voices, gave me strength. I began to learn how to lean on people, and I pressed on.

It wasn't until January 19th, 2011, the day before the first surgery, that I met the neurosurgeon. We talked briefly about my story and my intentions before he began to explain what was going to happen, should I decide to proceed. "Sitting in my office right now," he told us, "there's a twenty five percent chance that you'll never have another seizure". Twenty five percent. The words rang in my ears. Huh, I thought, I'm glad I didn't know that earlier, cause I would've backed out. He continued telling us the finer points of each surgery and the risk factors that went along with them. I was glad that I'd said to my parents in the waiting room that this meeting was probably going to freak me out and I needed them to be strong for me. I wasn't going to be in any shape to comfort them.

I asked the doctor how he would be reattaching my bone flap to my skull, and he told me it would be with a series of titanium plates and screws. "So, will I be able to get HBO? I'd say Shotime, but Weeds is lacking this season."

Nothing. I expected at least a courtesy laugh, but he just looked at me, confused, before replying, "Oh, you're being silly". Silly? Come on, help me out, this is my process! This is how I'm okay with having you cut open my head like Hannibal!

He kept talking as I ranted silently through his blatant disregard of my humor, counting on my parents to catch what I missed of his lecture. But at the end of our allotted hour, he turned to me and asked, "So?" His nurse sat at the desk in the corner that pushed up to the end of the bench I was sitting on. She slid a piece of paper and a pen over to me. I looked at the heading: "Form of Consent". This was it. Time to make a decision.

I looked up, I've come this far, I've already carved out the perfect time in my life, and I know I'll regret it if I don't at least try. The unreadable looks on my parents' faces didn't provide any insight or opinions, so I took a deep breath and said, "Okay, let's do this".

The ink that carved my signature into the copy paper stone was still drying as we left with our coats, hats and mittens. Twenty five percent, I kept thinking. I shook my head and smiled. If I'd known that small number, that number that only comes true when you've got a world's worth of love and prayers behind you, I would've missed out on one of the best decisions of my life.

Pink, Sparkles and Frills

I sat on the twin bed in the Aunt Alice room, tracing the blue and white floral patterns with my finger. The Aunt Alice room was really just the guest room, but my Great Aunt Alice always stayed there when she came to visit, so we called it her room. She was really old, older than my grandma. She smelled like old people, but she always had lots of stories about when she was a little girl like me. Her refrigerator was made out of a wooden box! And when it was cold in the winter, she and grandma would put rocks in the fire to make them hot and then put them my their feet in their beds to keep them warm!

Aunt Alice wasn't visiting that day, but I was sitting in her room with my mom. I watched my finger as it outlined each flower, leaf and stem. I didn't want to look at mom cause I knew she'd ask me what was wrong and I didn't wanna tell her. I didn't wanna talk about it, I just wanted to forget about it. When I was done tracing everything I could reach, I folded my hands and looked at my lap.

We were going somewhere, and mom asked me what I wanted to wear. I'd been thinking a lot at school that day, watching the other kindergartners on the playground, one of half of the girls in navy blue jumpers instead of the navy blue uniform pants. The boys always spilled their lunch on their white polo shirts and got dirt and grass stains on them at recess, but mine were always clean. I didn't play in the mud with the boys. Ick! Boys are so weird.

Still looking down, I dropped my head to the right, my ear fusing to my shrugged shoulder in an, "I'm embarrassed and don't want to do this with you right now" fashion. Normally, I loved picking out clothes, but my little, pigtailed head was full of doubts and insecurities.

"I wanna wear a dress", I answered quietly. I always wanted to wear a dress. The more frills, the better. Pink, too. It was my favorite color. I had a pair of pink jellies with sparkles in them, and they were sooooo pretty, but it was too cold out. I had a pair of sparkly ruby red slippers like Dorothy in The Wizard of Oz, and they were warmer cause the toes were closed on them, unlike the jellies, so maybe I could wear those. I'd ask mom about that.

I had never told mom why I always had to wear dresses. I was embarrassed about it; I didn't want her to laugh or even try to be nice about it, cause that still wouldn't change anything. I had a really low voice. When I talked, I sounded like a boy. I hated it!! Every time I opened my mouth to say something, it sounded like a boy talking! I had to make sure no one thought I was a boy, sure that everyone knew I was a girl, so I had to wear dresses. It was the only solution. The girlier, the better. Dresses, frills, bows, sparkles, pink, the whole shebang. Nikky F.'s mom would braid her hair that special way that made it look like the braid started at the top of her head - she called it a "french braid" - but my mom didn't know how to do that, so I had to have a regular braid that didn't start until it got off my head. Pigtails looked better than that, so most of the time, I would opt for those instead. Or maybe just a high, side ponytail with a binder that had those little, colored balls on the end. I didn't know how to use them myself, even though I'd tried on my little sister more than once, but my mom could do it.

Mom asked if I wanted to wear the green dress with the little flowers on it and the ruffle at the bottom. I loved that dress, it was really pretty. I said yeah. No one would think I was a boy if I wore that.


Twenty years later, I stand in front of my mirror, turning left so I could just see the long, shiny hair that cascaded past my collarbone. It's so pretty, so long. So feminine. I pause, a wistful look in my eyes, something just shy of a smile on my mouth. It's gonna take at least three years for me to get my hair this long again. I close my eyes and turn right, preparing myself for what I know I'm about to see. I gather my strength and look again to the mirror. The hair on the left side of my head isn't even an inch long yet. It grows in funny directions, leaving what looks like bald spots in the places where it changes from growing right to growing up, growing up to growing left. Front and center, featured so boldly I can easily imagine it surrounded my neon signs in the shape of arrows, is The Scar. It runs right down the middle of my head, veering left just before my forehead to curve behind my temple and complete its trace of the incision made only five weeks ago; the incision that changed the course of my life.

I'm proud of my battle wound, a sign of the fight I chose to fight and win against the odds. I'm proud of the strength I found within myself and the strength I was given by others. I'm proud to be part of this human race that is able to love so fiercely and hold so gently people they hardly know. But still, my head flops to the side and my ear fuses to my shrugged shoulder as I emit an almost-silent whine, lamenting the return of a long-overcome fear: I'm gonna look like a boy.

In just a couple weeks, I'm going to cut my beautiful curls to match the mannish buzz cut on the masculine side of my Victor/Victoria head.

It's never gonna grow back and I'm gonna look like a man, is the thought that goes through my head like a marquee. My solution: same as it was last time, pink, sparkles and frills. Maybe not to the same degree as when I was five, but definitely with the same intention. I'll wear pink, lavender, light green; all those colors that girls - I mean, women - like. I'll buy clothes with hints of ruffles and flowers on them. I'll use the gift card I got for Christmas to get that swimsuit with the ruffles and eyelets. I'll wear a little more than my usual amount of makeup when I go out and I'll always wear earrings. And maybe a necklace, too. I don't want to look gaudy or trashy, but I want to make sure no one thinks I'm a boy. I don't have grass stains on my white shirt, and I certainly didn't play in the mud during my lunch break. I'm not going to start now.

The Red Sea

Lately, my scar has been reminding me of the Red Sea as it parted for Moses. A long, thin, red line runs from the back of my head, straight down the continental divide at the top of my head before veering left and inch before the hairline and ending at my left temple. Flanking the scar are two long stretches of bald, one on each side. I don't know why, but I keep thinking of the Red Sea, which parts at the site of my scar; rather, the site of my scar and the two bowling lanes that run down its sides. Strangely, Moses must have gained weight on the way, because at the top of my head, the part is almost twice as wide. I'm not sure why...

I've been putting scar-reducing lotion on the fault line to help it heal and shrink, but so far, I haven't noticed any difference when it comes to the hair that keeps falling out. I rub my index finger in the pot of solid lotion, the heat from my hand melting it like a candle. I have to look in the mirror to make sure I'm applying it in the right place, not in a patch of perfectly good, if buzzed, hair. I rub the lotion onto my scalp, trying to help, and even though I take my hand away and see that it's covered with little, dark brown hairs, each time I'm still sure it'll work. Soon enough; soon enough.

Back Up to Five

I woke up this morning at a five on the pain scale, maybe a six for a little bit. A searing pain... is that a thing? "Searing pain"? Or am I just stringing together words from different buckets? I don't remember. Either way, "searing" is the word that comes to mind as I'm trying to describe the shooting line of pain that woke me up an hour before my alarm. I tried to go back to sleep, but I couldn't. I just laid there. That's another word: laid vs. lay vs. lie, I never really know when to use which, so I just guess. I should look that up one of these days. Anyway, shortly after that, my mom came in to my room to check on me before she left for work. She asked how I was feeling, but I just looked up at her, my eyes mostly closed to the light pouring in from the hallway, dreading the vibrations that would fill my head as I spoke. I replied with some form of, "my head really hurts". She walked over to my bedside, a mask of concern and love on her face as she reached down and held my wrist. I told her that I'd just taken two Tylenols and that hopefully they would kick in soon. She put her hand on my forehead and I maneuvered it, testing its temperature, until her warm palm lifted away and her cold fingers rested just above my eyes. It just hurt so bad. She asked me if I wanted a cold pack and took my lack of answer as a yes. She left and walked downstairs to the kitchen, stopping on the way to tell my dad that I wouldn't be driving him to the airport this afternoon. I felt disappointed, because I've been looking forward to driving again, but I knew she was probably right; even if I was feeling better, I should start by driving on empty roads, not the highway.

Mom came back up the creaking stairs, carrying a freezer-sized Ziploc full of ice cubes and wrapped in a brown dishtowel with a fall leaf pattern on it. She placed it on the left side of my head as I lay on my right. I took it and moved it into place, trying unsuccessfully to balance it so I wouldn't have to hold it. Oh well, holding it was better than not having it. Mom went to work, promising to call and check in. I held my ice pack in place and drifted into a three-quarters sleep. The cold felt good. Great, even.

When it started to melt and I could feel the drops of cold water slide from my hairline down my neck, catching in my t-shirt, an oversized, white welcome greeter, I lifted off the cold pack and gently dropped it onto the floor. The neck of my shirt was wet and I cringed inwardly every time it touched my skin as I rearranged myself in the bed. I looked at the green, digital numbers on the 1970s, brown alarm clock that sat on the other side of the room and decided to give myself fifteen more minutes for the headache to die down before I would give up and take an oxycodone. But fifteen minutes later, I pushed back my covers and stood up in stages, finding that a five turned into a six the farther I got from horizontal. I could feel my face arrange itself into a look of pain and brought a hand to my head. The dresser stands only four feet away, making the pharmacy on top of it easy to reach. I hadn't taken an oxycodone in well over a week and it pained me to push down and turn the child-proof bottle top. I slid one small, white pill into my hand and eyed the half glass of water on my nightstand but paused before reaching out to it. I had pills to take, and since I was up, I should just take them all. I opened each bottle in turn, shaking one of this kind and two of that into my hand. I threw the total seven into my mouth and gulped them down with the room temperature water. I stood for just a moment to make sure they all went down before climbing back into bed. I picked up my Droid with its purple half-cover (I broke the front half at a bagel shop a few months ago) and re-set the alarm for 10:30 - a half-hour away. I figured it would take about half an hour for the oxycodone to kick in.

Half-way through my sleep, my mom called. How's your headache? Same. Are you still in bed? Yes. Is your dad there? Just left, but he'll be back in a couple hours. I'm sorry, honey. Thanks; me too. Did you end up taking an oxycodone? Yeah, I just did. Okay, good.

It hurt to talk, so I didn't linger or chat. I explained that I planned to wake up in fifteen minutes, when, hopefully, the resignedly-taken narcotics had started to work. She paused; "I wonder if we should take you to the hospital...". Why? "You haven't had a headache like this in a while. What if your brain is bleeding? Are you having any neurological symptoms on your right side?" No, I'm okay.

We performed a neuro exam anyway. I wiggled my fingers and toes, wagged my tongue from side to side, held out my hands with my palms both up and down. She felt better when I told her I was able to open all of my pill bottles with no trouble.

With an, "I love you", we hung up and I went back to sleep.

I awoke again with my phone alarm, singing me a Jack Johnson song that started quietly and got progressively louder - one of the alarm settings I turned on. I slid the face of the alarm to dismiss it and touched the email icon. My eyelids were heavy as I scrolled through the emails, separating the junk from the junk with coupons I might use from the legitimate emails. I picked up my computer and opened my Blogger dashboard just as my dad called me. We went through the same conversation pattern as mom, but instead of brain bleeding and a phone-conducted exam, he substituted that he would be home in a few hours and planned to take a cab to the airport. "I'm sorry I can't drive you", I added. "Don't worry, honey. I'm fine. I just want you to get better." Again, an, "I love you" ended the vibrations that radiated from my sinus cavities.

My head was feeling a little better, so I spent an hour and a half blogging in bed before deciding it was time for breakfast.

A Tickle in My Throat

The past couple mornings I've woken up with a sore throat. My mom swears by EmergenC, so I dissolve one in a glass of grapefruit juice, watching the lemon-flavored powder fizz as I try to stir out the clumps. It doesn't take to the juice as well as Benefiber, and I have to use my spoon to squish the clumps against the side of the glass to break them up into grainy, vitamin C sand. I take a deep breath and down the juice in three gulps; I don't want it to congeal before I get a chance to drink it. Setting the glass, empty but for the spoon used to stir it, on the table, I hope that I'm not coming down with something.

I remember the months going up to the surgery, and being so scared that I would get sick and they wouldn't operate on me. I was terrified of anything that would preclude the doctors from going ahead with my surgery. I tried not to dwell on it, to take care of myself without the gnawing fear, but of course it was still there. How could it not be? Waiting on a surgery like that, waiting to see if maybe, just maybe, your life could be forever changed, there's no way you can stay calm and put together all the time.

Five weeks removed, I'm not scared anymore; a cold would be more of an inconvenience. What does make me nervous is that, historically, my seizure threshold is lower when I'm sick. The possibility that no one would operate on me as a catalyst for fear has been replaced by the possibility that it didn't work. It's been over a month and I haven't had a single seizure. I've done my best to stay away from anything that could act as a trigger, but any time that my right hand feels weak, my heart starts beating faster and my breath gets shallow and quick. On the surface, I know that I'm still getting function back in the hand that once couldn't hold a fork, but underneath, my stomach churns.

An hour later, the pain in my throat is back. I heat up water for some tea, but I doubt it'll work. Maybe I should take a nap. I had a big day yesterday: two excursions, one Skype appointment and a family friend over for dinner. Each activity was positive, I enjoyed myself very much, but it was the first time in weeks that I took two naps in one day.

Yesterday I didn't write, mostly because if I wasn't busy, I was sleeping. I glanced at my computer, seeing it sideways from my pillow, but I couldn't summon the energy. I always feel guilty when I don't blog. It's really not necessary for me to feel guilty, I have no legitimate reason to, but I do anyway. I was just so tired. I'm tired again today, a hangover from my big day yesterday, but writing feels nice. It always does, unless I'm falling asleep on my keyboard, which has happened more than once...

Anyway, that's what's in my head today. Fairly inconsequential thoughts swirling around, leaving patterns in their wakes while I drift off to sleep.

Good Vibrations

Most of the chairs were empty as I walked the perimeter toward what I assumed would fill out to be the soprano section and chose a seat in the front. I unzipped my big puffy coat and draped it over the plastic chair along with my scarf. I dropped my purse by my feet after double checking that my phone was on silent. I left my hat on.

Upon arrival, my director greeted me with a warm hug, asking how I was, good, healing well, how are you? I told her I might have to go early if it gets to be too much and that I would likely stay sitting most of the times we were supposed to stand up. She understood completely and said there was no problem at all.

Five or ten minutes after me, the bulk of the singers arrived, taking off hats and gloves as they walked in, chatting as they stood around the card table in the corner, waiting to get coffee or tea or a name tag. I watched them until I felt self-conscious, the only one not talking to anybody, and turned back around to study my music. A girl who graduated two years ahead of me came over and took the chair next to me and we gave the customary, "Wow! It's been so long! It's great to see you!", and filled each other in on our lives. I had someone to talk to - must not be a social pariah!

Greeted, caffeinated and seated, it was finally time to start rehearsal. This was it, it was go time. Moment of truth. And then the most magical thing happened: I opened my mouth. I took a deep breath, held my music up so I could see the director, and something inside me broke free. My soul rushed out of me, so eager to show the world that it was free, that it was singing. Its song joined fifty other voices, echoing off each other in a joyous release. Though not easy, or particularly sturdy, I stood with the rest of the class; I was too happy to hear my body's protests, but that was fine.

We ran through a whole movement before stopping to go back and tackle trouble spots. I relished the last note, sustaining it as long as I could, but I kept running out of breath. Though everyone else stayed standing, I sat down as we rustled through our music books to and from rehearsal letters A through Z, running and rerunning this part or that. I noticed as I sang that I hardly had half the breath capacity that I used to. I'm sure it will return as I get stronger, but for the time being I feel like I'm hyperventilating after each measure.

We ran the movement again from the beginning and I started to stand up but thought better of it. As we sang, the director pointed at her cheek bones and yelled, "sing here!" I manipulated the sound within me and aimed it at my cheek bones, where I knew it would land in my sinus cavities. It did. My sinuses reverberated, throwing a clear song out of me but leaving my head vibrating. I felt a little like a cartoon character whose head was clunked by two symbols and kept vibrating, even their irises going back and forth in their whites like they're watching a tennis volley. I had to pause, catch my breath, hold my head with both hands until it stopped moving and maybe vomit, too, but I waited. I stuck it out through sheer will power for just two more bars until we reached the end.

The rehearsal lasted two and a half hours, and though my shaky insides protested at mile marker two hours, I kept singing. I couldn't bring myself to leave yet, it felt too good to stop.

On the way out, my director stopped me and asked how it went: "It was amazing! I didn't stand up the whole time, but I sang all of it! Now I'm gonna go home and sleep for three days."