Thomas Jefferson High

Walking into the long, rectangular room of waxy-looking tables, I was greeted with a wave of cold; Room 5 was easily ten degrees colder than the linoleum hallway leading to it. Maybe the absence of hormones in skinny jeans and patterned t-shirts chattering and texting their ways to class had something to do with it.

I saw Marcee from the Epilepsy Foundation of Colorado at the far end directing a man with a projector and liaising with what looked like a teacher. Another girl stood nearby, wearing the slightly unsure look of a teenager wanting to help but not quite sure how. She must be the Youth Council girl. A hug to Marcee, a handshake to the girl, Delany, and I began realigning tables to face our panel, making sure that no one would be blocked by the grey projector cart. A ringing that sounded more like a telephone than a bell floated in from the hallway - our cue. We rearranged a few more chairs just as students began to file into the classroom.

The classes from Period 1 of 5 settled into their seats and Marcee stood up: "Hi, guys. We're here today to talk to you about epilepsy." A middle-aged teacher interrupted with a sharp, "phones away. No electronics." I thought with a smile that in my day, phones seen outside of lockers were confiscated. Not that I had a phone until eleventh grade anyway. A scuffle came from the corner as cells were shoved into backpacks and purses to a soundtrack of muttering. When faces had all surfaced again, Marcee continued, introducing Delany and me before beginning a video on epilepsy awareness made a few months ago by the Youth Council. The ROTC students sat closer to the front, and in the moving light from the pulled-down screen, I watched their faces, polite and attentive, thinking of questions to ask when prompted during Q&A. The lights came on when the Epilepsy Foundation's red flame logo appeared on the screen, causing me to squint while my eyes adjusted. I took a sip from the neutered latte in front of me, lamenting my one year post-surgical moratorium on caffeine. I watched Delany stand and introduce herself, much better prepared than I with a typed up script of her history with epilepsy. I pushed back my blue chair when she sat down and stood to deliver the mini-bio I've given so many times before: I was diagnosed when I was seven; I have simple partial seizures; this is what happens when I have a seizure; I tried a dozen medications, but none of them worked; I had surgery last January; I have a scar that runs in an arc, covering the length of my head; I haven't had a seizure in ten months.

"Does anyone have a question?", Marcee asked. One hand went up. "Yes, you in the black shirt." When his was answered, two more hands came up. Then three. They really were interested; they wanted to learn. Well, even if they didn't, they did a very good job of hiding it. I was touched.

Throughout the five periods, three different kids told us they had epilepsy: two girls in a dance team class whose friends all knew talked openly about their own experiences and one boy a few periods later came up to our table after his class, asking about the Youth Council. A boy who came through at least twice with different classes told us that he'd been at the talk last year and remembered what to do when a woman in his church had a tonic-clonic seizure one Sunday. Smiles crossed my face at these stories; these kids were learning.

It wasn't until 2:45 that I walked through the parking lot with Marcee, my coat buttoned up but my mittons at home. "That was really great." "Yeah, it was."

Guest Post

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

Guest Post

My guest post on the TalkAboutIt blog: Diagnosed
http://talkaboutitorg.ning.com/profiles/blogs/diagnosed

Tracing Scars

Last night I sat on my red couch with the cushions in need of re-stuffing, my bare legs folded to the side as I leaned my weight to my elbow as it rested on the squishy arm. A thick book lay open on my lap, a glass of ice water on a coaster within reach. I fingered my scar as I read, feeling the divot grow deeper and more pronounced the farther back I reached. I traced the bumpy ridges that betray the titanium plates that lay under a shallow layer of scalp, holding my fractured skull in place as it heals. A couple thick hairs grow straight out of the scar, short and spiky as they twist their way through the former home of staples and gauze. Overall, I can't believe how much my hair has grown since it was shaved in January, my scalp dyed yellow from the surgical iodine, scabs forming over the spots rubbed raw from the vice that held my head in place as it was sawed open. Today, my scar isn't even visible unless I pull my hair to the sides, away from its severe middle part. It curls its dark brown way over my ears, ending just below my earlobes. The scar feels deep and dramatic to my fingers, though I suppose most cuts and scrapes do, all looking much less impressive when finally viewed in a mirror.

It hurts to touch my scar for long, pain spreading to the growing bone beneath, so I drop my hand and turn the page. The incision is really the only part that hurts these days. I can't lie on my left because it's still too tender, but as long as I avoid pressure, I'm mostly okay. The skull remodeling itself around the plates and screws does still hurt. Two or three times a day, I make my way to the basket of pills in my bathroom or the bottle of Advil in my purse to ward away a quick, sharp pain or a low, dull one, my bones creaking and scraping together like the wooden floors of an old house expanding in the summer heat. Fortunately they're working, quieting my mind and smoothing out the winces on my face in a matter of minutes. It's been a month since the last time I was put out of commission and relegated to my couch for hours. I'm starting to see that I've turned a corner. Just five more months until I can get off another medication; five more seizure-free months until my chance of relapse is less than ten percent. At the same time it's gone so slowly and so quickly. It feels like only yesterday I was in my parents' home, the timer on my phone set to my daily Percocet regimen.

An hour later I woke up to a shoulder wet with drool, still sitting with the book on my contorted legs, my limp fingers brushing the back of John's shirt. "Honey, wake up, it's time to go to bed."

My Epilepsy Story: Mothers

I found this blog today and one post in particular struck me. I think about my own mom and how amazing she's always been, supporting me and my epilepsy even while she was scared herself. She sat by my bedside in the hospital and held my hand, making up stories to keep my mind off the pain. So to all of the moms out there, whether your kid has epilepsy or the flu, we thank you for taking care of us.

My Epilepsy Story: Mothers.....: Lately I have been blessed to meet mothers that inspire me.... As I listen to these mothers talk about the challenges that their children ha...

Talk About It! Blog

Hey everybody, the organization Talk About It! helps raise epilepsy awareness through various celebrities. They just started a blog and I wanted to share it with you! http://talkaboutitorg.ning.com/profiles/blogs/taiblog1

Pressure

My phone chimed the arrival of an email and I realized my eyes were closed. When did that happen? I lifted my head, leaving a face-shaped grease mark on the pages of my old accounting text book. I thought of how many similar stains remain on the pages of my college texts and hand outs and wondered briefly where they all are these days.

I'd been thinking about what to do with my life (as I do every day) and thought about accounting. I like puzzle solving and I'm good at pattern recognition, so why not? I literally dusted off Financial Accounting Edition 9 and the mostly empty notebook under it and brought it over to my kitchen table - my job finding war room. As I read through the faded highlighter, I realized how rusty I was. Was it really worth it to try to re-learn accounting? I might not even get an interview for a job that requires it. Maybe I'll cross that bridge when I get to it; I know I can get it all back if I put my mind to it. As long as my mind is awake, that is. My eyes started to droop again.

I went to the doctor a few days ago and got a proper standard check-up for the first time in at least two years. I figure I've seen enough doctors to last me a lifetime, but besides a cursory am-I-healthy-enough-to-have-surgery look over, they've only been looking at my head. A slightly older nurse led me back to a small office off of the waiting room. I stepped on the scale, deciding that my clothes obviously weigh a considerable amount, told her my history and slowly listed the names of my many medications as she looked each one up on their new computer system. As I spelled out each medication and waited for the dusty computer to recognize it before repeating the dosage, I kept thinking how much quicker it would be if I were to just write it myself. Ten minutes later, she lifted a stethoscope and pressure cuff off the wall to take my vitals. Pump, pump, pump, the air squished out of the rubber bulb and into the growing black band that was cutting off my blood supply. I've always hated having my blood pressure taken - I keep thinking about how it has to collapse my arm artery, which freaks me out. Finally, mercifully, she deflated the cuff and pulled away the Velcro. "Is your blood pressure usually really low?", she asked. "Um, yeah, it's generally low", I replied. "Okay, I just wanted to check that my cuff wasn't broken"... ??? "What is it?", I asked. "Ninety over fifty". What? That's low, even for me. But suddenly it made sense: the fatigue, the heat intolerance, the head rush every time I stand up, the fogginess in my mind. I don't have blood in my head!

I told John about it on my way out and when he got home, he spent a good twenty minutes online trying to find out how to increase blood pressure. Lie on my back with my feet up in the air; work out lightly to get the blood flowing; avoid stress, as it makes your veins dilate; eat salt; cross my legs. That night I lay on my bed, feet propped up on a three-pillow tower, feeling my mind return to me. I took some Advil to relieve the pain of the building pressure in my head, thinking about the trade-off between blood in my brain and pain in my head. Lately the pain has only been along the incision as my skull grows back together, bone fusing to bone, remodeling around Titanium. Soon it will be nothing more than a scar, white on white. Soon. In the meantime, I'll wait on my back, legs crossed above me.

Share Your Story

Sometimes living with epilepsy can be lonely. Despite how many of us are out there, people don't talk about it, and it can leave you feeling like you're the only one. I promise, you're not. I know one random girl in Denver telling you you're not alone might not mean much, but it's true. We're all around. We just need to open up and talk about it. When I started to tell people about my epilepsy and how I deal with it in my own life, people started to come out of the woodwork; it was amazing and truly touching, and it continues today. When you share yourself, you help others to do the same, and a bond is created; a bond that can't break, because you helped each other stop hiding a piece of yourselves and thereby live life to its fullest. You can't really live if you're busy spending your time and energy trying to keep yourself a secret. As soon as you can come to terms with your epilepsy and accept yourself for all that you are, not just the parts you cherry pick to display, a weight lifts off of your shoulders and suddenly you feel free.

The Epilepsy Foundation of Colorado has an ongoing series called, Share Your Story. In each newsletter, people with epilepsy talk about living with it - the struggles, the challenges, the silver linings. Check out the most recent edition (I'm in it, too!): http://www.epilepsycolorado.org/index.php?s=10796.

One Down!

Today is my first day off of Lyrica! I only started decreasing it a week ago, but already I feel like I have more energy. Maybe that's a placebo effect, but I honestly don't care. I've been so tired and missing caffeine like crazy, so every little bit helps. I can't believe that this is really happening. The doctors told me that if I made it six months seizure-free, I could get off of one of my three seizure meds, and if I make it a year, I can get off another. It's a couple weeks early, but I can't believe I've gone this long without a single seizure. It's really real, isn't it. Huh. Wow. I never thought that the day would come where I really was seizure-free and could get off of my medicine. Granted, I'm most likely going to be on medication for the rest of my life, but it'll just be a small dose of one medication, not three.

I get so nervous sometimes that maybe it hasn't gone away, maybe it'll come back. My right hand is still a little weak, I'm probably at 90% or so, and every time I notice it, I worry that maybe I'm about to have a seizure, maybe I am having a little seizure. But I'm not. Sometimes I still can't believe it. But this time it's real. I'm really getting better.

I still get headaches and I still can't sleep on my left side, but overall I'm feeling really good. When I was first researching the surgery, I never would've imagined that it would take so long to recover, but I guess it does. I've been out of work since October, which seems crazy when I think about it. Nine months. What have I been doing for the last nine months?? I guess a lot of sleeping, popping pain pills, researching, testing and writing. Life has kept me pretty busy, but in the last couple weeks I've started to get bored. I'm ready to go back into the workforce. I'm ready to get a job again, be a productive member of society. A paycheck wouldn't hurt, either. Now it's just a question of figuring out what I want to do with my life and getting someone to hire me... Easy peasy...

A Big Year

It’s my birthday tomorrow. In twenty nine minutes, to be exact. Twenty five has been a big year. Since I was a kid, I would sit down the night before my birthday and write. I would reflect upon the ups, the downs, the changes and the things that stayed the same. I’ve been wondering how to even begin to tackle that this night, so much has happened. I guess I would say that this year was, overall, a year of love and acceptance. I had my first whole summer since college without a weekend on Bohn Island; I grew closer to friends I hadn’t expected and grew apart from others I never thought I would; I watched my friends get married and heard them talk about children; I even found my own boyfriend and grew to love him, too. I watched as my epilepsy consumed my life, first as my seizures got worse and I had sometimes-debilitating side effects from my pills every day, and then as I decided to have surgery and lived through what that meant. I went from sitting in a Starbucks with an October wind rushing me every time the door opened and reading that brain surgery had an eighty to ninety percent chance of success to three months later, sitting in a plastic chair with foam cushioning across from a neurosurgeon as he told me I had a twenty five percent chance of success and then taking it. God, I feel like all I think about and all I talk about is my surgery, seizures, epilepsy and recovery! Sometimes I get so sick of being inside my own broken-record, but somehow I’m not able to escape it. Yes, the headaches tether my thoughts to my body, but maybe I’m just not able to let it go. I spent three months planning and five more recovering, putting a grand total of almost three quarters of my twenty fifth year centered around my surgeries. I learned so much this year. Being denied the choice to take care of myself, I was forced to let go, give in and depend on other people. I never knew how much trust I was keeping inside me, grasping tightly to it as I elbowed people away. It was when I gave in and fell, dropping my trust until my arms went slack, that I knew I had enough love to catch me before I hit the ground. I learned trust, I learned love, I learned friendship, and I could because of how I learned pain. So yes, it was a big year.

As I rapidly approach midnight, I make two promises to myself: that I remember all of the lessons I learned this year, and that I let myself move on. I can’t be trapped in my limbo forever; I didn’t have surgery so that I could stay and dwell on it for the rest of my life. This year I will remember and I will forget. I will cherish and I will endure. There is so much out there to experience, and now I don’t have any reason to stay behind. I stare through the window to the future and I see that I know nothing about the world and very little about life, but it’s okay, I don’t need to have all of the answers. Tomorrow I’ll only be a day older than today.

Epilepsy Camp, Part I

I pulled into what looked to be the main parking lot, nearest to the admissions building, which sported a carved wooden sign, “YMCA of the Rockies” with the subheading, “altitude 8010 ft”. Breathing heavily from the lack of oxygen, I hoisted my gym bag and backpack from my car and trekked up to the front desk.

“Hi”, deep breath, “I’m with the”, deep breath, “Epilepsy”, deep breath, “Foundation”. Deep breath, “where are they?”

I was given a detail-less map with Deer Ridge Lodge circled, though I still had no idea how to get there. My bags were heavy and part of me was wondering why I’d decided to stay up at the camp for a week with eighty kids and a bunch of adults whom I didn’t know. I paused on the sidewalk, looking ahead, then down at my map, then back up at the main building again when I saw four women walking toward me in matching blue t-shirts that read, “Jason Fleishman Camp”, surrounded by a collage of inspirational words, like “adventure”, “friendship” and “seizures”. “Hi, excuse me, are you guys with the Epilepsy Foundation camp?” I asked, breathless but hopeful.

I spent the next week with the most amazing group of people who not only opened my heart, but opened my eyes. The Epilepsy Foundation of Colorado puts on the Jason Fleishman Camp every year for kids who have epilepsy. Growing up, I never knew anyone else who had seizures; I was the only one. My friends were all, and are all, amazing and understanding and supportive, but still they can’t really know what it’s like to live with epilepsy. This camp is a whole different world. Kids who feel left out of activities are suddenly horseback riding and zipline-ing over rivers surrounded by mountains; people know that an absence seizure is not daydreaming; having a tonic-clonic (grand mal) seizure isn’t embarrassing; and no one is going to tease them for being different since they aren’t.

The campers ranged from no seizures in two years to two seizures yesterday; some have tonic-clonic seizures, some complex partial, some absence and others multiple kinds. One activity that they did was called, “Ask the Doc”. The campers broke up into three sessions based on age (one group 10-12 and two groups 13-17) and sat in a circle on the floor and had the chance to ask a doctor and a couple nurses any questions they had about seizures and epilepsy. I sat in on the younger kids’ session. It reminded me of questions I had when I was their age. My heart went out to them, their small heads full of big questions and big fears about their little bodies. They asked if you can die from seizures, the answer to which was yes. They asked about emergency meds, administered if a seizure lasts longer than five minutes. They asked about pharmaceutical and surgical treatment options. They asked about seizure dogs - how they work, what they do, how fluffy they are and where they can get one. I thought it was a great idea to give them this opportunity to ask the questions that they’re really thinking and that they don’t always want to ask in front of their parents because they don’t want to freak their parents out more than they already are. I remember that. I still feel that way. We love our families and like anyone, we want to protect them, so sometimes we filter what we say to them; we don’t let them know everything we want to know because we don’t want to scare them. We can see how hard it is for a family to have an epileptic kid and we don’t want to burden them more than we have to. That’s why it’s so important to give these kids the opportunity to be in a place where they can ask anything.

Kind of Exciting

The Epilepsy Foundation of Minnesota just released their July issue, and there's an article on my blog! Pretty cool, huh? In case you want to check it out, click here and it's on pages eight and nine!

Packing for Summer Camp

Tomorrow morning at seven am, I'll load up my car with a white and pink gym bag full of too many things I likely won't need and a backpack containing my computer, notebook and a couple books and head out. I'm spending the next five days at the Epilepsy Foundation of Colorado's summer camp for kids with epilepsy at the YMCA in Estes Park. Excited as I am, I had a gyro for dinner from my favorite Greek place since I know I'll be eating camp food for a week. Now I'm downing water, though, since the gyro filled me up with enough sodium to last me a month, but that's a good thing because my medications give me really low sodium, which can make me feel faint and tired and weak, and I don't need to feel those while chasing after water jugs, s'more fixings and small children.

On Wednesday, I ordered a refill of my Lyrica so I would have enough for the trip, but my prescription had run out. The Walgreens pharmacy staff sent a message to my neurologist's asking them to approve another refill, but apparently no one ever got back to them. Now I'm out. I called the clinic this morning and got the on call doctor, who gave me two days' worth of pills to carry me through Monday, when I can get ahold of my doctor, but on Monday I'll be in Estes Park, which doesn't have a Walgreens. Plus, I'll be at camp. I was checking around online and found three other pharmacies there, so hopefully she'll be able to send a prescription to one of those and hopefully I'll be able to duck out quickly to run over and pick it up. It's frustrating when something like this happens. I get excited that I remembered to order my pills early, but then I find out that the prescription doesn't have any refills left and no one authorizes it for more, so I'm suddenly left with no pills. It's irritating. I did, however, find out just the other day that I can start to wean off of my Lyrica! On Monday, I will have been seizure free for five months! Pretty amazing. I still have to talk to my doc about my decreasing plan, but the wheels are in motion! I was also told to get a CT scan of my brain because of the headaches. My doctor at Mayo said that the tenderness I feel on my left is normal, but the frequent recurring headaches are not. Slightly concerning, but at least we're still looking into it. So that's good.

Anyway, I need to finish packing now so I can get some good rest before a week of sleeping few hours on an uncomfortable bed! I'll try to post while I'm there, but I may not have Internet access, in which case I'll be back Thursday!

Erica

Healing

I still tear up when I talk about the surgery. Not every time, not when I give my well-worn spiel to a stranger or acquaintance, not when tears would be inappropriate and awkward. No, not then. It’s when I remember the sights, the sounds, the pills, the blue masks hovering over me as I drifted into anesthetic sleep, holding someone’s hand. It’s when I remember the fear - both mine and my family’s. It’s when I’m talking to someone who is so gentle, so caring, that my crumbled guard is flooded with the memories that I can’t push away.

I want it to be done; I wish I could wipe my hands of the last seven months and just enjoy the gift I was given: a new life. I wish I could just enjoy it, but I keep getting sucked back like the stubborn straw that keeps slurping and slurping even though all that’s left is the latte-flavored water from the last melted ice cubes.

But maybe it’s good. I went through a lot. To just walk away doesn’t seem right. When I remember what I went through, I can acknowledge and accept the tests, the surgeries, the fear and the uncertainty that have branded me. When I remember, I let myself start to heal.

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?