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

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.

Emails

I’m working on the surgery section of my book today. I just put a disk sent by my mom into my computer and opened up the files: 129 emails sent by my parents while I was in the hospital. I want to include them partly because I was so unaware while lying in my bed, and partly because this was a big, impactful and hard experience for my parents, too. The only problem is that I have to read them.

I’ve become really good at breaking down when I go back to the hospital in my mind. Now reading through the lines and seeing the pain and fear behind the words pulls the tears up into my eyes.

But no, it’s not just the pain and fear, it’s also the love and hope. The pain and fear remind me of mine and compound it by adding the guilt I feel as a reflex for causing that in other people. All of that suffering makes me want to hug myself so I can hold that girl, the one who lived that blessed and graceful nightmare, and tell her it’s all going to be okay. But then the love. I read an email from my little sister to the rest of my family in response to an update my mom sent out after the second surgery:

“Erica and our whole family come from the most amazing support group. I get tears every time I see all these prompt responses, prayers, good wishes, blog hits, and love. I am in awe and so grateful for all of you- but most of all my sister who is the absolute epitome of kindness and positivity.

Thank you all for showing me and each other how much one person can be loved and supported by family and friends.

With gratitude and love,

Greta”

There was so much love surrounding me, so many people telling me I was courageous and inspiring and all of these things that I never would have thought to call myself. Where was it coming from? How could all of these people care so much? Who the hell was I to be on the receiving end of so much? I didn’t get it. I still don’t. But Lord, do I appreciate it.

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.

2011 Strides for Epilepsy

Six of the eight Living In a Brainstorm team members after our walk!

Mail

I got a letter in the mail today from my neurologist with the results from the last minute MRI I took earlier this week. It echoed the message my doctor left on my answering machine, assuring me that everything looks just fine. There's a "red-shade area of encephalomalacia measuring nearly 4 cm in diameter in the anterior left parietal lobe", meaning that there's a hole in my brain, but it's the hole that was made intentionally on January 24th and looks normal. No strange liquids are secreting into areas where they shouldn't be and my sinuses and mastoids (though I have no idea what those are), are clear. So pretty much it's all quiet on the left parietal front.

Between that and a take out menu featuring a cartoon of a 1950s woman on a motorcycle with a man behind her doing various inappropriate things to promote the daily specials was my credit card bill. It's raining outside, so I walked quickly up the uncovered stairs and waited until I reached my apartment to open the letter. Tearing at the lip of the envelope, I ungracefully pulled out the long sheet of paper that began with a sum total that made my heart sink and my stomach clench up. Honestly it could have been five dollars and I would've had the same reaction, though. I scanned down the list of purchases, mostly grocery stores, a couple coffee shops, a cell phone, my Netflix account and the monthly FreeCreditReport.com report that isn't actually free. I read through the list and all I kept thinking was, what am I doing? What am I doing? I have no income, I have no job, I write all day but that actually costs money if you think about the electric bill being augmented by the increased use of my computer. Okay, so writing is good, and I do want to tell my story even if I'm the only one who ever reads it. And yes, I'm doing a fair amount of volunteer work with the Epilepsy Foundation of Colorado. The walk is in two days and I only need a hundred dollars more to reach my fundraising goal of a thousand dollars, which I have to say I'm pretty proud of. Still, I feel like I'm slacking. I feel like I should be doing something more, I should be getting back on the saddle and riding it like a pro, kicking ass and taking names and working million-hour weeks like I used to. I know that I have great earning potential, but I'm not putting it to use sitting here in my kitchen writing about my feelings, drinking neutered coffee and popping Tylenol. I mean, what the hell do I expect to feel when I open a credit card bill? A check written out to me saying, "Sorry you're feeling stressed, Erica, here's a little something on us"? Of course not. I don't know, I'm probably just rambling now.

I've applied to a couple jobs now, all finance or business development jobs, bringing me back to my econ roots. I have all of this training in economics, finance and business and it seems wasteful to not be using it, especially when those jobs tend to bring in a fairly nice income. I miss making money. It's just so frustrating though, because even as I sit here and write this, I can feel the left anterior parietal region of my head is trying to decide if it wants to be a dull or a sharp pain. When is this going to be over? When am I going to feel confident that I can go into a workplace and last a whole day? Not crazy hours, just a regular 40-50 hour week. That's all I want, but can I handle it? I don't know the answer to that. I just feel like I'm floating in limbo and it's getting hard to breathe.

Maybe I'm too far into my head now and should probably go heat up some chili and watch an episode of Prison Break with my boyfriend before going to sleep. That's probably best. Things tend to be much clearer in the morning.

Last Minute Testing Part I

Monday morning the alarm on my phone starting singing Cee-Lo Green at seven am. I lay in bed listening to the song play through as I fought the urge to reset it for an hour later. No choice this morning, though - I had an important date. Reluctantly, sadly, I threw aside the thin sheet that separated my body from the hot summer air that hung in my room like a blanket, the air conditioning useless on the second floor of the one hundred year old house. A frustrated fan in the corner accomplishing nothing but a carousel of humid heat whirling around in useless circles.

I took a cold shower in the huge bathroom, shaving my legs with the razor I brought to avoid the Costco buckets of dark blue, plastic disposable razors that cut my ankles and knees. It was shorts weather, not jeans.

An hour after waking up, I was out the door, borrowing my dad’s car to drive the forty five minutes in traffic to my neurologist’s office. I was early, but it gave me time to fill out the quality of life questionnaires, and I had a book to keep me company for the twenty extra minutes I had to wait.

Finally I got into the office, chatting briefly with the doctor who has treated me since I was eighteen, and whom I absolutely love. I touched her finger and touched my nose; walked on my toes, heels and feet end-to-end; pointed to the moving hand; held my extremities still as she pushed or pulled; stood still with my feet together, arms up and eyes closed; and passed the reflex tests.

When we sat down, I told her about my headaches. I’m having them a few times a week, each of varying degrees of strength and duration. Sometimes two extra strength Tylenols do the trick just fine, sometimes they hardly do anything and I spend three hours on my couch with a cold pack balanced lightly on my head. She looked concerned. I asked her if that was normal since there were people with knives in my brain a couple months ago, and she replied that I had a very extensive surgery and that it’s going to take a long time to recover. Still, she picked up her phone and dialed a few numbers, not enough to be an outside call, so I figured it was an extension. Someone answered, though I couldn’t hear their voice through her ear piece. Then she asked about an MRI - could they do one today? Tonight? She looked at me as she asked them about availability. I guessed I had my evening plans decided for me and they didn’t include meeting my friends at the neighborhood bar.

“Seven? Okay, I can stay around until then”, she spoke into the small microphone that hung from her ear to her mouth. Hanging up the phone, she told me that she wanted to get an MRI done before I left town the next day. She didn’t say it, but I knew that she was wary of the headaches. She said I should have blood work done as well, since there might be something like low hemoglobin or high medicine levels causing my extreme fatigue.

We said goodbye and I promised to go to the hospital and get my blood drawn on my way to my seven pm MRI. She walked me to the waiting room where she handed me the blood work order and asked her assistant to schedule an appointment for me in July. I put the date and time in my phone and set twenty four hour and one hour reminders.

As I turned from the windowed desk, a man in light blue scrubs caught me and said that he got the MRI moved up to noon - in one hour.

Warehouse Wedding

The news is on the airport television behind me, going on about something that’s not their business but that smells of scandal and good ratings, as usual. The gate isn’t too crowded yet, but as my coffee cools and boarding time approaches, I’m sure it will fill up; the flights from Minneapolis to Denver are usually full. I have a window seat this time, 18A, and am hoping A is on my right side so I’ll be able to sleep against the thick glass as we fly over the Midwest.

This weekend I went back home to Minnesota for the wedding of one of my close friends from high school. The wedding, in essentially an abandoned warehouse, was absolutely beautiful with candles hanging from branches over the long white tablecloths and lining the balconies of the old theater.

Two of my girlfriends came over to my parents’ house beforehand to do our hair and makeup together and get advice on which dress and which shoes to wear. It reminded me of our high school and middle school dances so long ago, giddy and full of the excitement that comes with the novelty and raging hormones of adolescence. This time the wardrobe decisions were less desperate since none of the three of us were trolling for single men, but the slight edge of melodrama while deciding between the pale pink or the black heels is fun.

In the end, it was a mom who dropped us off at the wedding, all coiffed and ready for pictures. Again heralding back beautifully to the middle school days before drivers licenses.

The ceremony was perfect, the vows and the best man’s prayer making me tear up a bit. The dinner was delicious, and the lack of a DJ surprisingly refreshing as the chicken dance was replaced by a well-thought out playlist. The dance floor was full of childhood friends whom I still love so much. Inappropriate jokes and their slightly homoerotic tendencies left me laughing all night and remembering how much I miss these ridiculous boys who have turned into wonderful men.

First, second and third winds magically entered me each time I was almost ready to call a cab and go home. I danced without caffeine for hours, finally closing the party down around two am. Chatting with the cabbie who drove me home kept me from falling asleep in his back seat, and after using my very last bit of energy to brush my teeth and wash the mascara from my eyes, I fell into bed, passing out as soon as my head touched the pillow.

Jobs

I just submitted my application for my first real, full time, grownup job. I'm still hesitant, of course, but I think it's time. The job I applied for is not particularly easy or laid back, and may turn out to be sixty hour weeks, but it's a job I know I would be good at, really good at, so I decided to apply. We'll see if I even get an interview, but wouldn't that be great if I did?

I still sleep a lot and take naps every other day, but I'll figure something out. I'll just have to get used to staying awake and 100% on all day... One of those things that sounds good, but is not always realistic, but that I end up finding a solution to anyway. Sigh.

I don't know, I'm not sure exactly what I'm saying, or exactly what I'm doing, but I am doing something. We'll just have to see what happens next.