Identity Crisis

I've been seizure-free for almost nine months now. My hand sits quietly until I call it to action, and even as it moves, it follows directions. Not once since the afternoon of January 24th has it taken matters into its own hand, so to say. Not once has lightening struck my mind, leaving me a passenger in my own body. Finally, finally, I am master and commander of myself. I don't stagger around the city with double vision, waiting for nausea to pass before it's time to take my next dose of the epilepsy medications that leave me sick. I don't worry about making sure the coffee I hold is in my left hand, because I don't worry about dropping it with no notice, latte spilling up and over the edge of a cardboard cup as it hits the ground in slow motion like a TV commercial selling paper towels.

But if I don't worry about having a seizure, what do I do instead? A silly question, I know, and I sound like the millionaire lamenting her lack of liquidity, but it's something I think about. For most of my life, epilepsy has been part of who I am and has shaped me into the person who sits at her computer day after day, writing, blogging, tweeting, trying to figure out where she fits in the world. My seizures set me apart in a way that made me look at the world in a different way; I see the people who need help, the people who are made fun of for things they didn't choose, the people who are searching desperately for hope to hold onto. I see them because they are like me. No, were like me. I grew up as part of a group; a group that none of us meant to find, but did, and were bound together by electricity, but now I've lost the spark. Where do I belong now? Who am I when part of my identity was taken out with a scalpel? I'm grateful beyond words for the gift of this seizure-free life I was given on that cold, January day, but I feel like something's missing. Do I still call myself epileptic? Would it make me a fraud to say that I am? It's not the best group to be in, but it's a group, nonetheless, and one in which I made a place for myself. So who am I now? Where do I belong? How can I say "I understand" when my empathy emerges only from my memories?

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...

One Down!

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

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

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

A Big Year

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

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

Kind of Exciting

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

Body Over Mind

It's eight thirty and the sun has set, but it's still light. I started my dishwasher before coming outside to enjoy the last bit of gloaming, after which I'll go back in to make spring rolls for dinner. But right now, I'm sitting on the top landing of the outside stairwell in my apartment building, my legs dangling down the first two steps and my computer on my lap. The air would make anything more than a tank top and shorts sweat, but in my gray spaghetti straps and the red shorts with beaded minnows I got for my birthday, I feel great. I feel like the air and I are the same temperature, like we flow in and out of each other without causing more than a light breeze, like I don't know where I end and the world begins. No mosquitoes bother me since they don't have any in Colorado, one thing I don't miss about home. As I take a sip of wine from the glass sitting next to me, warming slightly in the outside air, I reflect on my day.

I went to my first career counseling session today. Of course, I was half an hour late because of horrible traffic and missed the first half of it, but it didn't seem that I missed much since I just stayed after to complete the Strong Interests (or something like that) test. Thirty minutes of multiple choice questions, covering my job interests, my interpersonal skills, what kinds of activities I enjoy and various job environment preferences. A twelve dollar processing fee later, I was on my way. I didn't learn any deep truths about myself, but that wasn't really the point - today was mostly a meet and greet.

I rolled down the windows in my car and blasted angry girl music to drown out my thoughts. It's been four and a half months since my surgeries, but they still permeate my life. I never imagined that I would feel plagued by recovery for this long. Why am I still so tired all of the time? Why do I still get headaches almost every day? When I lie on my couch with a cold pack on my forehead or have to go home early because the Tylenol isn't working, I feel like a let-down. If I'm not letting myself down for failing to accomplish much of anything in a day, I'm letting down my parents for not having a job yet, or my pilates class for not being able to go upside down, or my friends for having to retreat from loud noises, crowded spaces and prolonged conversation. Is it me? Am I just lazy and looking for an excuse? A cop out? Do I just need to be given special treatment and attention? Those are the thoughts that make me hate myself. The voice inside of me that answers yes to each one makes me feel worse and worse about myself. The stubborn streak comes back and yells at me that I'm not trying hard enough. Body be damned, I clearly just don't have the will. This is the part where I have to stop myself. I can't just say, "body be damned", because I spent the last eight months trying to fix my body. I cannot put that in jeopardy just because I'm feeling bad. I worked too hard to get where I am now to throw that away, even if it would mean appeasing my family, my friends and myself. No. It's not worth it. I'm healing, all of this is okay, it's normal. I'm not making up excuses. I don't know how long it will take me to heal, but I can't rush it. Not after all I went through. I'm seizure-free, and I won't give that up.

Dollars Well Deserved

Today was the Strides for Epilepsy 5K walk that the Epilepsy Foundation of CO puts on every year. With the support of all of you, I was able to raise $1,271 for the Foundation's programs and epilepsy research. It means so, so much to me. I am truly touched.

This year I put together a team of me and seven of my close friends and named it after this blog, and together we made the 3.2ish mile walk in a convoluted path around City Park in Denver. The weather was beautiful, all sunshine and not too hot - though by the half-way point I was sweating through my bright green t-shirt. I was very glad that I hadn't forgotten to wear deodorant like I did yesterday...

As usual, I packed too much stuff that we didn't need or use, like a light sweatshirt and sunscreen, but at least we used all the water! (It also helped that I didn't have to carry the backpack myself, but instead gave the heavy purple bag with the sweaty straps to the Boyfriend of the Year.) There were hydration stands giving out bottles of water and Gatorade, which was good because we hadn't thought to bring water for the four-legged ninth member of our team! It took the all but one of us who walked about an hour to complete the trek, and toward the end, as my muscles started to ache and I felt like I was sweating all the way through my running shoes, I decided that every dollar we'd raised was absolutely earned. But then we passed a little girl of maybe three or four who clearly had serious mental development deficiencies, sitting in the back of an SUV with its trunk open and her legs dangling off the edge, crying while her mom looked through a bag for water and snacks. On the back of her mom's shirt was a picture of the girl and the heading, "Team Lily-bug". As I turned my eyes back to the black pavement ahead of me, they started to fill with tears. She was so young. She has so much life ahead of her, but seizures stole so much of that away from her. Throughout the next ten minutes or so, we passed a ton of kids and adults with the same picture on their backs of the smiling girl. I feel like I've been crying too easily at memories of my own seizures and surgeries as well as stories of other people's experiences, the differences between us and the comfort I feel in the things we share. I swallowed my tears, pushing them from my eyes, because I don't know her; I haven't had enough generalized seizures to cause the brain damage that happens too often; I haven't earned the right to cry. It just breaks my heart, though. My boyfriend squeezed my hand as we walked by the girl, and every time we saw t-shirts with, "In memory of", or, "We miss you", or birth and death dates under a smiling picture. My friends separately mentioned to me how surprised they were at how many of those shirts we saw. I was surprised, too. I realized that every dollar we'd raised was deserved; so well deserved.

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.

Naps

I still take naps almost every day. I don't know how much of my fatigue is from surgery and how much is from my medication, which is still at pre-surgery levels, but no matter the cause, I'm getting tired of it (no pun intended). I wish I could make it through a whole day like everyone else, but I just get so tired, I have to stop and recharge like a four year old phone battery. I used to have serious fatigue before my surgery, but back then I could mask it with caffeine. Decaf's placebo effect works occasionally, but on the whole it's not much help. Ah, the days when I could shotgun a Red Bull and be back in business - at least for another couple hours.

Agh! It's just frustrating! I have so many things I want to do, need to do, each day, but I feel like I can only make it through half of them. Time slides by, more slippery each time I try to catch it, and so soon the day is gone. Between heavy eyes that close on their own and the headaches that have crept back in and leave me out of play, it's as though I only have a few productive hours every day. I'm over it. I don't know what I can do about it, though. I feel trapped.