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.

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.

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...

My New Haircut!

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.