Living In a Brainstorm the book now available!!

Opening a new window in my browser, I cautiously typed in the address for Amazon, careful to choose each letter correctly; no spelling mistakes to slow me down. The logo appeared first and I read the sign under it, cajoling me to Try Prime as the rest of the page rendered. Finally the cursor blinked in the search box and I typed in my name, quickly this time, my caution replaced by impatient excitement. E-r-i-c-a E-g- the auto-complete filled in the last two letters and I thrilled that the electronic behemoth knew my name. Two seconds might have been an eternity as the search list populated, and there, right there at the top, was my book: Living In a Brainstorm. Available in paperback and Kindle. My book, my story, the six months that changed my life.

I decided to split the book into three parts: Part I Decisions, follows my decision to have surgery and all of the testing - both physical and emotional - that went into it. Part II Surgery is comprised by the eight days I spent in the hospital having two surgeries to hopefully cure my epilepsy. It's told partly by me but also in part through the emails and messages that went back and forth between my parents and my family and friends as they kept everyone updated and drew strength from each others' love. The last section, Part III Recovery, includes my first excursion out of the house, figuring out how to go up and down stairs again, getting staples taken out of my head and learning how to depend on other people let them in.

I want to thank everyone for all of their love and support throughout this amazing, terrifying, thrilling, painful, wonderful journey. I couldn't have done it without each and every one of you and I will be eternally grateful.

Love,

Erica

CreateSpace: https://www.createspace.com/4323804
Amazon: http://www.amazon.com/Living-Brainstorm-Erica-Marie-Moos/dp/098953801X/ref=sr_1_1?ie=UTF8&qid=1374451089&sr=8-1&keywords=living+in+a+brainstorm

Changed

It's amazing how time flies. The dichotomy of a vivid memory: so crisp and so clear it could be yesterday, yet so far away that you hardly recognize the you that appears through the mist of the mind. I think less and less about my surgery these days and I'm grateful I wrote it all down when I realize its ability to leave me, the sands of time running through my fingers into a pile on the ground from which it came. So much has changed from those days, yet somehow I feel the same. Changed. No longer who I used to be, I'm complete. Whole. Erica 2.0.

I made a friend last night who's only beginning her journey. I recognized the fear, anticipation, excitment, anxiety, elation and terror that played across her face in concert, all at once. She's going to have my surgery, our surgery. Anyone who's followed this blog has gone through this surgery with me; I was never alone. Whether it was prayers, good vibes, healing energy or something else, all that you sent me forever altered my life in such an amazing way. Now I pray for her, I send her good mojo and healing energy. I had such an amazing experience and I can't wait for her to have the same, for her to find her new life.

Seize The Tweetosphere!

Tweets: one hundred and forty characters to tell the world what you're thinking. It gives a numerical value to, "So much to say and so little time". Well, technically it's space, not time, but if I think hard enough, I could probably figure something out with a space-time continuum. I really don't actually know what that means, though, which could cause a problem...

Anyway, for Purple Day, we're Seizing The Internet!! Tonight we start seizing the tweetosphere. A hundred and forty character limit makes getting across a point tricky. To help, I've put together some tweet-sized sound bites for you here. Don't forget to use the hashtag #SeizeTheInternet and feel free to spread the love by tagging your other favorite epilepsy bloggers and tweeters :) Check out Living Well With Epilepsy's Directory for more of us!

(Stats courtesy of Talk About It.org)

50 MILLION people around the world live with #epilepsy. #SeizeTheInternet!

If someone is having a #seizure, DO NOT restrain them! #SeizeTheInternet!

Call 911 if it's someone's first #seizure or if it lasts more than 5 minutes - an ambulance is expensive #SeizeTheInternet!

#Epilepsy is NOT contagious! Who came up with that anyway? #SeizeTheInternet!

Nearly 3 million people in the US have #epilepsy. #SeizeTheInternet!

ONE-THIRD of people with #epilepsy live with uncontrollable seizures because no available treatment works for them. #SeizeTheInternet!

BETWEEN 4 AND 10 OUT OF 1,000 people on earth live with active seizures at any one time. #Epilepsy #SeizeTheInternet!

A #seizure is a jolt of electricity through the brain, kind of like a bolt of lightening. #epilepsy #SeizeTheInternet!

For 6 OUT OF 10 people living with #epilepsy, the cause of their #seizures is unknown. #SeizeTheInternet!

50,000 people die from #epilepsy-related causes in the United States every year. #SeizeTheInternet! @SUDEPAware

If someone is having a #seizure, DON'T put anything in their mouth! It's not possible to swallow your tongue. I promise. #SeizeTheInternet!

Seize The Internet for Purple Day!

It's rapidly approaching my new bedtime of 10:15pm, and I'm chastising myself for not writing earlier, but I've spent the last couple hours downloading apps onto my new iPhone! I've finally given into peer pressure and become one of the masses. I'm okay with that, though, especially since it's shaping up to be a great phone and is happily accommodating all of my requests for social media apps. Why must I have these, you ask? Because Purple Day is coming up! Purple Day is March 26th - Monday - and is a whole day set aside to raise awareness about epilepsy! Pretty neat, huh?

This year my goal is to Seize the Internet, but, like most endeavors, it's not only bigger with help, it's more fun. In admiration of what purple stands for, take pictures all week of anything purple you see and email to me here or tweet it to me, @lvngnbrainstorm, so I can post it on my Seize The Internet wall on Pinterest! When I say anything purple, I mean EVERYTHING! I want to see pictures of purple gum on the sidewalk, purple tongues from Now And Laters, whatever you can find!

Let's Seize the blogosphere, seize the tweetosphere, seize the ... Facebook-o-sphere?? Absolutely! Seize The Internet with me and show the world what we can do when we work together to spread epilepsy awareness!

ps- don't forget to use the hashtag #SeizeTheInternet!

Be sure to check out Living Well With Epilepsy, My Life As Mandy... With Epilepsy, Kat's Cafe and your local Epilepsy Foundation chapter for more ideas on how to celebrate Purple Day!

Tides

I reached for the alarm on the new purple cell phone that sat on my nightstand, knowing that I'd already used my allotted one snooze for the day. I slid my finger across the screen, silencing it as I sat up and slowly, ungracefully, swung my legs over the edge of the bed. It's been exactly fourteen months since my first surgery, but as my hand lifted to cover the throbbing on the left side of my skull, just above my ear, not so deeply buried under its scar, I remembered that fourteen months really isn't that long.

I became more aware of the extent of the pain with each step toward the bathroom, my left hand holding its head in place, my right rubbing at my tired eyes. The light in the hallway, brighter than I remembered, gave way to a pleasant darkness in the unlit bathroom, which I held onto as I brushed my teeth, my thickly shadowed reflection barely visible in the mirror. Shaving my legs in the dark seemed inadvisable, so I winced as I begrudgingly flipped the switch on the pale green wall before turning on the water.

The Advil I'd taken upon awakening finally started to kick in mid-shower, but even walking into work, I felt the pain with every footfall. I tried not to let it show in my face as I braced my body for each wave. A voice inside my head whispered that when I didn't have a job, I could have stayed in bed and tried to sleep through it. I only let myself long for that time for a second before issuing what I don't think will be the last pep talk: Erica, listen. You can do this. It really doesn't hurt that much. You already took Advil, so whatever you're feeling is not real. You're making it up. Stop making things up and stop feeling sorry for yourself. You don't have time for that. Game face. I wasn't making up the pain, but telling myself it wasn't real somehow helped... I think... At least I was able to continue on productively with my day. Two more six hour rounds of Advil and I'm feeling pretty good. The headache lingers, but it comes and goes like the tide, calling my attention to my past, reminding me who I am and what I can do, before releasing me to the present.

Never Thought The Day Would Come

A glass of water sat on a ceramic coaster on the nightstand in my old room. I reached for the dark yellow bottle on the dresser next to it, turning the white cap emblazoned with the Walgreen's logo and tipping one oval pill into my palm. One pill. Not two, but one. A smile played on my lips as I thought to myself, it's really happening.

That was two nights ago. Earlier in the day, I sat in one of the two chairs opposite a large desk from my neurologist. We talked about me and John moving back to Minneapolis a few days before, my new job as a Business Analyst at Target that I start on Monday, the headaches I still get, though they're becoming less frequent, how much my hair has grown back over the past year, the fact that I'm still seizure-free. I held my breath and crossed my fingers as I asked the question I'd come for: "Dr. So said that if I made it a year without having a seizure, I could wean off of my Vimpat. Do you think I can start that?"

She paused a moment, a thoughtful look on her face as it searched my medical records on her computer screen for any reason I shouldn't. "Okay."

Relief, joy, disbelief flooded me all at once and I couldn't help the smile on my face as I said, "I honestly never in my life thought this day would come."

I won't be completely off of the drug for a month, but every day I get closer, I have more and more energy, the way I did seven months ago when I got off of my Lyrica, but this time it's even more noticeable. I'm still on Lamictal XR every night and probably will be for the rest of my life, but I'm fine with that. I always figured that liver failure was what would eventually take me one day, but now I really feel I can let that go. I'm gonna be okay.

Guest Post: Annie Evans

Tips for Traveling with Epilepsy

Although epilepsy is a serious medical condition, it shouldn’t prevent you from seeing the world! With some extra precaution and planning,

1. Don’t Travel Alone – It’s not wise to travel alone when you have epilepsy, especially if you have frequent seizures or could experience confusion or a loss of consciousness after a seizure. If you were alone in an unfamiliar place when these symptoms occur, you could put yourself into a dangerous situation. The person traveling with you should know exactly what to do if a seizure occurs and should be comfortable with explaining it to others.

2. Consider Different Modes of Transportation – When making travel plans, carefully consider the modes of transportation available to you. Depending on the type and frequency of your seizures, some kinds of transportation may be safer than others. Most people with epilepsy can safely travel by air, but you should still bring a doctor’s letter with you that states that you can fly safely. You’ll also need to inform the flight crew before taking off and give them some instructions on what they should do if you have a seizure.

3. Bring Extra Medication – You should always carry a day’s supply of medication with you, wherever you go. You should also plan ahead for any time changes so that you continue to take your medication at the right times. If you are flying, bring two sets of medication on your trip – one for your carry-on and another for your checked luggage. This way you will be prepared if your bags get lost. Make sure that all of your medications in in their original packaging with labels so that you aren’t questioned by airport security.

4. Take Precautions for a VNS – If you have a vagus nerve stimulator (VNS) implanted in your chest to prevent seizures, you will need to take some extra precautions to avoid trouble with airport security. Make sure you carry your VNS registration card with you and have your doctor write a note explaining the purpose of the device.

5. Wear a Medical ID Bracelet – If you have epilepsy, you should already wear your medical ID bracelet at all times. While your friends and family at home already know about your basic information and condition, the best way that medical personnel can get this information is with your medical ID. It should have your full name, medical condition (epilepsy), medications and allergies, emergency contact number, and doctor's phone number engraved on it.

Annie Evans is a certified radiologist who enjoys writing health articles in her spare time. She also owns a site called Become an X-Ray Technician for students interested in training to be a radiologic technician.

The Depths Of Human Kindness

My friend Mandy wrote a great post on her blog My Life As Mandy... With Epilepsy today. Her question was, is epilepsy really a blessing in disguise? She said yes. A lot of people told her she was wrong and that epilepsy is a curse, a black spot on the face of life, but I agree with her with every fiber of my soul.

Diagnosed at age seven, I don't remember a time without seizures, tests, doctor visits and handfuls of pills. Sometimes it felt like my life was an exercise in silver linings, but I can honestly say that if I could rewrite it, I wouldn't change a thing. For me, epilepsy has been a blessing; it's taught me more about what it means to be human than anything else I've ever experienced. Epilepsy is part of who I am, it's shaped me into the person I am today.

Having a disorder like epilepsy makes me see the world differently; I'm more aware of and sensitive to the difficulties others face, I'm more attuned to the heartbeat of the earth and I can tell you it's strong. The world is full of people who each have burdens, weights on their shoulders that at times feel unbearable. Some are loud, some are silent. Some are mad, some are scared, some are hopeful. Some endure the bad as a shadow over their life, some spend every day seeking the good in their lot. Some feel cheated, some feel grateful.

I've always had a roof over my head; I've never been hungry; I've never feared for my life; I've never smelled death in the streets. I can't imagine how life must be for so many in our world, the pain and hardships they've experienced. But when I hear of the people who never lose faith, who strive for more, strive for happiness, I am awestruck, I am inspired.

The cross I bear is a pocket charm compared to many, but it is the depths of human kindness that never ceases to amaze me. No matter the size of your burden, no matter the cause or kind, there are people watching and waiting to give you their hand. We are never truly alone. None of us. We are connected by life, energy, spirit; we come from the same beginnings and we go to the same ends. It might not always feel like it, there are times we all feel lonely, misunderstood, even abandoned, but reach out your hand and it will meet the same flesh that covers you, the same blood that runs through your veins. This is what epilepsy has taught me.

Each time I reach inward, I am amazed at the strength I find within myself. Each time I look up, I am amazed by the strength of those around me; their love and support feeds me, sustains me. Maybe I would have figured that out a different way, but in this life, it is my journey with epilepsy that has given me no choice but to search myself and search the world and what I find, every day, every minute, every second, touches my soul. For this, I am eternally grateful.

I once wrote here that my surgery was a perfect storm of Grace. I was wrong. It is my life that continues to be the perfect storm of Grace.

Never Have I Ever

I always hated that game when I was younger. While all of the other teenagers or college kids put down fingers or took drinks with a sly I'm-busted-for-something-cool-and-notorious-making, I sat on the edge and tried not to call attention to my full cup and the five fingers that all still stood at attention. I was never part of the popular elite like my sister and I was never the bad girl or wild child but I'm okay with that. I never snuck out of the house, I was always home by curfew and called if I was going to be late, I've never even smoked a cigarette and didn't drink until college. I've never punched someone and never gotten detention, let alone been arrested. I did slap someone once, but he asked for it and we're good now. At 26, there are plenty of things I've never done, and while it was embarrassing from time to time when I was younger, I have no regrets. I'm a goody-two-shoes and that's fine. There's just one thing I haven't done that from time to time makes me sheepish: I've never seen someone have a tonic-clonic seizure.

Last week, I was on a Google Plus Hangout video chatting session with some other epilepsy bloggers. "Meeting" them and swapping stories was great - they're all talented, dedicated people who are doing their part to make the world a more seizure-friendly place. We talked about what kinds of seizures we and ours have and I was amazed, as always, at how many different kinds exist. "You know what I'm talking about," was usually true, but a few times I hung back, hesitant, feeling like I should know more than I do. How haven't I ever seen someone have a grand mal seizure? I mean, I'm an epilepsy blogger! What kind of fraud must I be? I glanced at my untouched ginger ale and flashed back to an outstretched palm.

Why is it that we all want to be included so badly that we find ourselves wishing for terrible things? Staring into my computer on the tall kitchen table in my shoebox apartment, I realized what I was thinking and felt a little ridiculous. Would it be easier to relate if I'd seen one? Probably, but I should be glad, grateful, that my friends and family have never had them and none of the kids at the Epilepsy Foundation of Colorado's summer camp had one at lunch, walking through the Estes Park YMCA or, God forbid, on the ropes course. I remind myself of that whenever I'm feeling insecure, unsure if I'm really qualified to write about epilepsy.

On that note, here is a video of a generalized tonic-clonic seizure from the point of view of the man having it. It's a very powerful video and I recommend following the instructions: wait for it to load completely before starting it, turn off all the lights and wear headphones. It's very illuminating if you've, like me, never seen one or, like me, had one many years ago in the middle of the night and don't remember anything.

Kudos and thanks to Nathan Jones for doing such a great job with this and letting me post it here for you.

Guest Post: Seven Myths About Epilepsy

Here's a guest post from Casey Roberts, a student who writes for Radiology Assistant, which helps students find the right radiology degree.

Seven Myths About Epilepsy

As many of you know, epilepsy is a common topic of this blog.  We thought now would be a good time to discuss more information about it.  To that end, we have gathered seven myths commonly associated with epilepsy.

1: Flashing lights – Contrary to what “The Simpsons” and other shows will tell you, epileptic seizures are rarely brought on by flashing lights such as those found in Japanese cartoons.  This type of epilepsy is called photosensitive epilepsy and only five percent of those who are epileptic have it.

2: Hold me down – One of the common myths when someone is suffering from a seizure is to hold them down.  However, this can cause more problems than it solves.  If the person is in a relatively safe place, such as in an area where they can't fall, they should generally not be held down.  Instead, move objects that can be collided with away from the person having a seizure.

3: Tongue swallowing – We've all heard the old wives' tale of someone swallowing their tongue during a seizure, but how many times have you actually heard of that happening?  It is because this is almost unheard of.  In fact, placing an object in the mouth during a seizure can cause more damage than it prevents.

4: It's not rabies – Another myth surrounding seizures is that people can foam at the mouth like a rabid dog.  While some saliva may leak during a seizure, there is no foaming of the mouth during them as in someone who could be rabid.

5: On cue – In 2009, a British dancer attempted to bring on an epileptic seizure as a form of art. However, most people with epilepsy cannot bring on seizures at will.  In fact, their unpredictability makes the seizures one of the worst parts of epilepsy.

6: You have to be born with it – Unlike other disorders, such as autism, epilepsy is not something someone is born with.  It is often a side effect of traumatic brain injury, but anyone can develop it over the course of their life.  It is more often to first appear in children.

7: People with epilepsy can't do anything – Because epilepsy is such a wide ranging disease, so too are the people who have it.  They can do everything from hold down a normal job to drive a car.  It is those with severe seizures who have to rearrange their lives.

Casey Roberts is a student and also writes for http://radiologyassistant.org Radiology Assistant, which helps students find the right radiology degree.

The Longest Day

I was watching a show the other day about the training of special forces for various branches of the military. One episode featured a final exam called The Longest Day. It began with paddling a rubber raft through crashing waves, carrying it through the trees, completing a mission and walking the miles back through tear gas without masks. Somehow that sounds worse to me than brain surgery, but maybe it's because I know I can make it through it.

This day last year was my Longest Day. It was the scariest, most painful day of my life and I know I'll never forget it as long as I live. Right about now, I was finishing up my "stim test", where each electrode on my brain was reverse stimulated in turn to see what would happen. The doctors would press a button and my hand would jerk, or my eyes would move or my tongue would stick to the roof of my mouth and I couldn't breathe. Each time I heard one call a set of numbers to the other, I would wait for the shock and pray to God that nothing would happen. They were looking for my motor strip and I wanted so badly for it not to be under my seizure origin point, what they had come to call "the birthmark". I sat in my hospital bed, clutching the small, stuffed dog that my parents had gotten me in the Mayo Clinic gift shop. I was so scared. I focused on the sign my sister had made me that hung in my hospital room: We Love Our Erica. I traced the patterns with my eyes, drank in the colors and tried to stay calm.

In an hour and a half, my surgeon would come in and tell me that the birthmark was not on my motor strip, but right up against it. I was a candidate. I exhaled with my whole body, my whole spirit. I was a candidate. He told me that I could have the surgery, but there was a chance I would lose a good amount of sensation in my hand - I would have a hard time knowing how much pressure was needed to hold a fork, being able to recognize the shape of my wallet in my purse by touch. There was a chance I would lose some speech, some short term memory, though it wasn't very likely. "Do you still want to do it?" I paused for only a moment, because what stood firmly in my mind was that nothing had gone wrong yet, so there was no way it would start now. I lifted my right hand, covered in white tape to hold the IV in place, to the plastic table over my lap and signed the consent form.

Not until about 4pm was I finally brought down to the operating room. I remember a cleaning woman in the elevator as I was rolled in by a nurse. I said, "Hi, how are you?" as cheerily as I could. She looked startled but then smiled. I tried to be brave in the pre-op room among dozens of other patients in blue and white polkadotted smocks, lying in rough, white sheets on a plastic bed. It was easier the first time, when I didn't know what would happen, when I had no idea what I was getting myself into. Somehow, this time it was terrifying. A couple nice doctors, nurses and techs stopped by to explain a few last details, but I didn't care about the information, I just wanted their smiles and calming voices. A few layed hands on my shoulder or foot, and just a simple touch like that brought a sliver of peace.

The OR was brighter, more sterile, more ominous and more lonely than I'd remembered. Cindy wasn't there this time; she'd placed electrodes on my scalp for my monitoring the day after Thanksgiving and the grid on my brain during my first surgery, but since they were removing it, a much less delicate process, she was somewhere else. I didn't know anyone there. It was like the first day of kindergarten: terrifying and, as yet, the biggest day of my life. One man in blue scrubs came closer and smiled through his mask; he said Cindy had told him to take good care of me. I relaxed a little as he held my left hand and someone else took my right while a clear mask was lowered over my face.

I try to forget what happened when I woke up in post-op recovery. I try to block out the pain that was so terrible I screamed; the way I writhed on the bed, the bright light that stared me down when the doctors made me open my eyes, their hushed voices when I sobbed that my pain was a twelve and begged them to help me. That scene is burned into me. It felt like an eternity as the hysterical crying I realized was my own melted to a pleading whimper. This hadn't happened after my first surgery. Couldn't anyone help me? What went wrong?

Last night it came to me like it sometimes does. A wave of remembered trauma, pain, relief and gratitude smashed over me, its full force against my mind. Wet tears slid down my face and as my rock held me in his arms, they turned to sobs that wracked my body and tore sounds from my throat despite my efforts to stifle them. I could see the wet collecting on the collar of John's blue shirt, turning it dark and shiny. I began to calm down at the insistence of my nose that it needed a tissue. I went through three before I could breathe steadily again. I clutched John's back and laid my head on his chest. "It's okay, baby, it's gonna be okay. You've been through a lot." I have.

Thank you to everyone; all of you who have been here for me, with me. Thank you, God, for the blessings you've given me. Thank you, John, for listening, understanding and supporting me every day. Thank you, mom and dad, for holding my hands; sitting quietly when every little noise hurt; making up stories when I was scared; spoon-feeding me; forcing me to sit up, stand and walk despite my dirty looks and petulance; fixing oatmeal and fruit every morning; re-teaching me how to knit so I could regain the function of my hand; making me take naps even when I didn't want to; taking me on slow walks around the block in freezing cold January weather; but most of all, teaching me how to live the kind of life that makes me happy and fulfilled.

John asked me what I want to do tonight to commemorate my anniversary. I haven't decided yet whether I want to go out and celebrate or stay in and remember. Either way, I'll remain, as always, eternally grateful.

Comparing Chairs

The chairs in the radiology waiting room at Rose Medical Center in Denver are brown. Stripes alternate: dark brown curly designs that harken back to a more Victorian era and thin lines stringing together light brown circles - round baubles hanging like decorations on the Christmas trees taken down only a couple weeks ago.

The waiting room is half-filled with other patients - an older couple murmuring quietly in the corner, a Hispanic woman with three toddlers that play with a new baby as she speaks to the receptionist, a woman a couple years older than me reading a magazine, her tan purse on her lap. The brown chairs snake their way along the walls behind them all, dipping in the middle to create a make-shift division in between. I think of Mayo, with its mauve floral prints that will forever be etched in my mind.

At my one-year follow up with my neurologist at Mayo, we talked about the headaches I still get - a couple a week, most responsive to Advil, but about one a month that leaves me incapacitated, teathered to my couch or bed, trying for hours to sleep off the pain, even when it wakes me between dreams of headaches. He looked at me with concern, though his concerned face reminds me of a disappointed face that makes me think that I've done something wrong. Twenty six years of being a people-pleaser, I suppose. He told me that's not normal; I shouldn't be having them still. A few months ago, I made a similar complaint and was ordered an MRI. Apparently, it had shown a build up of fluid in my brain hole, but the doctors figured it would drain itself. Maybe it hasn't. He ordered a CT scan to see what's going on.

"Hi, my name is Erica Egge. I'm calling to schedule a CT," pause, "E-G-G-E".

"Hi, my name is Erica Egge. I'm calling to check on an order for a CT scan," pause, "Yes, I have my patient number," I read it off again, almost by memory. "Has the order been sent to Rose Medical in Denver yet? Does it have a note to call my insurance?" No, of course not. I give the number for MedSolutions and my insurance member ID. "It has to be noted on the order for the hospital to call them," I request, trying to hide the exasperation from my voice."

"Hi, I'm Erica Egge. I called yesterday. Has the order for my CT scan come in yet? No?"

It progressed thusly day after day. It took over a week for pre-authorization, but finally this morning I left my little third floor apartment for the hospital.

"Erica?" a middle-aged woman in scrubs called from a door to my right.

"I'm Erica," I stood upand walked to her, putting the purple cell phone that doubles as my safty-blanket back into my purse. She may have said her name as she led me down a linolium-floored hallway, but I don't remember it.

"Is it a subdermal hemotoma we're scanning today?"

I don't know what that means. "I had brain surgery about a year ago." Her eyes widened in the surprise I've come to recognize, even expect. "I'm doing fine, still seizure-free, but having headaches."

She opened the blond-stained wooden door to a testing room and walked in behind me. A slab of plastic covered in a white sheet with a small pillow for my head formed a make-shift bed sticking out of a large, white doughnut. I took out my earrings and held them in my hand as the bed began to move, jerking to a stop when the doughnut was positioned over my head. It was much quieter than an MRI, which somehow made it feel more ominous. A red light flashed through my closed eyelids. I began to pray. God, please watch over me. Please let me be okay. Please, I begged. The bed jerked back and forth as the machine emitted shots of radiation over my face to the brain behind it.

The ten minutes felt short and long at the same time when I heard a small motor propel my bed back out into the world, freeing me from my racing mind.

"That wasn't bad at all," I said to the tech, cheery with my brave face. Now it's just a matter of waiting. What happens if they find more fluid in my head? It depends. My favorite answer.

One Year Follow Up

The blue glue had formed dry clumps that stuck to my scalp and clung to the bases of each hair springing forth from it. I must say, though, that getting it out this time was much easier than when I had long hair. I turned the pink bottle of Garnier Fructis conditioner upside down and watched a long, creamy snake emerge and coil onto my palm. I ran my hands through my hair, feeling rough spots where the EEG leads had been that morning. The tech who put them on suggested putting conditioner in dry hair and letting it sit for a bit before combing out the glue and rinsing. I turned the black dial on the wall of my parents' bathroom and shut the sliding glass doors of the shower as it filled with steam. I figured fifteen minutes would be enough time: five minutes to fill with white fog and ten to saturate my dry skin and coughing lungs. The steam swallowed me as I stepped into the tan tile enclosure, sliding the warped and frosted glass behind me. I stood with my back to the spigot, letting the hot air warm my body. I had to inhale slowly through my nose to avoid water-induced coughing that felt like choking. I let my muscles relax and melt for a bit; it had been a long day.

My alarm went off at five thirty, Maroon 5 cutting through the early morning silence in the Rochester Garden Hilton. My mom stirred next to me as if she'd already been awake a few moments; John tried to sleep through it but I could see him twitch from his bed a few feet away. We brushed our teeth and washed our faces and my mom and I put on a little make up though it didn't do much to hide the bags under our eyes. In fifteen minutes, we were dressed, packed and out the door. The air was cold outside, a stark contrast from the desert climate of our room. Fortunately the car wasn't far away and it felt like no more than a minute had passed when we pulled into the best parking spot I'd had yet at the Mayo Clinic.

Standing in the steam, I picked up the pink comb on the ledge next to me and began running it through my hair; first one direction, then the next. I pushed the teeth along the scalp just above my hair line; I combed left, picking up glue and wiping it onto my leg, then combed right, finding a little more, and last forward, leaving wet hair hanging straight over my forehead like bangs with a slight curl at the edge where it met my eyes.

When we arrived at the door, the Gonda building was locked. "The doors don't open til six thirty," said a guard. A handful of other early arrivals sat on chairs or leaned against the glass wall separating the heated inter-doorway space from the white marble atrium.

"What time is it, mom?" I asked.

"Six ten," she replied. "Let's go get some breakfast." Caribou Coffee stood with warm welcoming arms across the street and down the block. I had oatmeal, John had a breakfast sandwich and mom had a coffee. I grabbed a paper napkin printed with the Caribou logo and a short holiday-themed Mad Lib. We ate our food and conversed in a series of requested adjectives and nouns, which I entered onto the napkin using the pen I lifted from our hotel room. The result was a mildly amusing story of buying bacon presents for your scissors and decorating a Christmas chair.

Our spirits lightened noticeably with food in our stomachs and we headed back to the hospital, checking in and being directed to the elevators to the desk on the eight floor of the Mayo building.

I'm quite convinced that the elevator in the Mayo building is the slowest in the continental U.S. It rose oh so incredibly slowly and steadily until the climbing light illuminated a black, printed "8", eliciting a ding and a slight lurch as the doors slid open. We stepped out into an unlit elevator bank, slightly concerned as we turned the corner to find an empty room facing an empty check in desk with half of its lights still out. We took a seat in three adjacent chairs upholstered in a familiar mauve floral pattern and waited.

The blue glue came out almost easily with each scrape of the comb. I ran my fingers through my hair every couple minutes to find the next shadow of an electrode. My hands and arms had become covered with hair and little rubbery balls of glue. The steam had stopped its flow and I reached for the silver handle on the wall, pulling it upward to start a stream of hot water from the bath faucet. I rinsed my hands and the comb in the falling stream and watched the discarded clumps travel down the drain before carefully placing the white, rubber plug.

One Year Follow-Up Update 2

EEG showed no seizure activity!! Dr. So wants me to get a CT because of the headaches I'm still getting. Apparently my MRI in March showed some fluid in my brain hole, which was normal, but having surgery headaches at this point is not normal, so he's wondering if the fluid has grown. The results will dictate in part when I can start to resume risky activity like riding a bike or skiing. He'll call me with the results next week and tell me if I can start to decrease my Vimpat! If so, it'll be a long, slow process that will take a couple months. Caffeine and alcohol (minus vodka red bulls) can resume normal activity after I'm off the Vimpat.
All in all, pretty great news! Now just waiting for my insurance to approve the CT and hopefully I can get it done today - preferably early so I have time to get back to St. Paul and wash my hair before dinner out at 7!

Mayo Follow-Up Update

Mom, John and I drove down to Rochester yesterday evening, had sandwiches (me and J) and salad (mom) at Canadian Honker and stayed in a 2 queen bed room at the Hilton Garden - J in one bed, me and mom in the other. I was hoping to snuggle w my mom but no luck.
Woke up at 5:30 to a wake up call and two cell phone alarms. Got to Mayo at 6:15 but it wasn't open yet, so we went to Caribou for bfast. Eventually got in and went to 8th floor of the Gonda bldg to get my itinerary. They gave me a red pager and I thought they were going to call me up, but 7:25 came and I figured out that they didn't know I was there for my EEG. I went up and told them and fortunately the EEG station was at the other end of the hallway, so I wasn't late.
EEG lasted about 3 hrs and included a nap, reading out loud, looking at pictures, looking at strobe lights (yuck) and hyperventilating for 3 min (double yuck). After EEG, got blood drawn and had western breakfast bagel at Bruegger's for lunch. Hit up the billing dept to deal w the $9,440 that mom paid out of pocket in March when I was still fighting w COBRA. Turns out we might not get it back because it was used to pay for two MRIs that didn't receive precertification. We're gonna fight it but there's a chance we won't win. :(
Right now we're waiting to see Dr. So. He'll give us the results of the EEG and I'll ask about the headaches I still get.
Will give an update on our way home!
Xoxo
E

No Longer Scared

<p>Wet hair drapes down the back of my neck, a curtain of dark brown descending from its mat on the flat spot of my head, just above the place where skull joins spinal cord. When it's wet like this, my scar shows clearly: a natural curved part in my hair, a red line carved into the white of my scalp. It's been eleven months and two days since it was stapled back together for the last time. I stood and stared at it in the hotel bathroom mirror, still foggy from my shower. A girl looked back at me, a white towel wrapped around her body, the end tucked in under her left armpit to hold it in place. She had mascara under her eyes, black smudges clinging to her face after minimal success with a bar of soap named after a Mexican grain. Her jaw was set in a poker face, her eyes unreadable, she was neither empty nor full. She looked back at me as if to say, "we've done our best. The rest is out of our hands."

Climbing into bed with a pen and my trusty green notebook, I cannot help but thinking of the last time I stayed here: frightened and determined, awaiting surgery. It was cold that night, January twentieth, but tonight, just shy of a year later, the air is warm; warm for a Minnesota December, at least. The Courtyard Marriott in Rochester is across the street from St. Marys Hospital, where I spent the longest, hardest and most formative eight days of my life. I watched it as we passed by, remembering the early morning when we scurried as fast as we could to the other side, no idea what we were in for. I'm not scared tonight like I was the night before that morning. The alarm I set for five thirty tomorrow morning will bring only the pain of bleary eyes and a pin prick to the inside of my right elbow.

I look at my wrists, the backs of my hands, to see the difference a year has made to their scars - what were once dark red scabs are now nothing more than silver circles ringed by brown. The place where a vice held my head looks today like a slight horizontal line, barely distinguishable from a wrinkle. No, it is not courage or bravery I need tomorrow, it's luck and a willingness to give myself over to whomever is in charge of these decisions. I've been seizure-free since I was rolled out of the operating room on the afternoon of January twenty fourth, two thousand and ten. It was a day I never thought would happen; a year I never dreamed possible. So tomorrow morning I return to the first scene: the check-in desk in the Gonda Building of The Mayo Clinic.

The doctors told me that if I made it a year seizure-free, I would have a ten percent chance of ever having another seizure. So far I haven't had a single one. Tomorrow, an EEG will determine whether or not there's still seizure activity in my brain; if there's not, I'll be able to get off another medication, leaving me with just one. If there is... But here's the thing: the past year has changed me; I'm a different woman from the one who first walked into that white marble atrium. Today, I'm happy, I'm in love, I'm free. Today, I'm no longer a girl and I'm no longer scared. I pray to God that I leave Mayo with good news, but even if I don't, I'll leave as a butterfly broke free of her cocoon to be part of the world.

My Deep Dark Fear

We didn't get home til late. If you can call nine thirty late, that is, which I suppose you can't, but I was tired anyway. And thirsty. Full and thirsty. An empty water glass stood used next to the sink. I picked it up but immediately dropped it as if it had burned me, white hot as it clanged to the counter. No, I thought, no, no, no. A familiar sensation melted through my right hand, pulsing twice like a heartbeat threatening to stir back to life. My legs turned to rubber and I lowered myself to the floor. Maybe my face went pale, the horror within myself etched on its features, maybe a "no" escaped my lips or maybe it was that I'd collapsed, but John came over to me, crouching with his hand on my shoulder, concern bordering on panic in his eyes. "What happened? Are you okay?"

I wasn't sure. I clutched my right hand in my left like I had so many times before and I waited for the shaking. But it never came. I felt frozen, as if any movement I made would cause me to break into a seizure. What was that? "Water," I asked, "can you hand me some water?" I didn't want the glass I'd just dropped. I didn't want to touch it, worried that a bad energy lingered in it still; a demon of Christmases past.

"It felt like a seizure," I answered to John's waiting form, now handing me water and soothingly rubbing my back, "but not a seizure. It had the feeling sort of, but really weak, and my hand didn't move or twitch or anything." I'd been seizure free for ten months, twenty five days and about eight hours. But it wasn't a seizure. So then what the hell was it?

Psychosomatic seizures are essentially your body remembering what a seizure feels like but without the actual electricity surge. They're often brought on by stress. Is that what it was? Did anything even happen or was it all in my head? My always nervous, ever vigilant, still healing head? Having a seizure is my deep dark fear; it creeps around the edges of my mind every time I startle, or sneeze, or drop something or am tired. It's as if my life since the afternoon of January 24th has been lived on borrowed faith and I'm waiting for my luck to run out. Please, God, don't let it run out. This can't be too good to be true.

Shameless Self Promotion

Denver's 9News Health Fair featured me on their Facebook page! Click here to check it out!

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."

Do I Or Don't I?

I sit in a marginally comfortable armed chair, perspiring slightly under my black suit jacket, across the desk from someone who has the power to change the course of my life with two words: "You're hired" or "I'm sorry." My heart speeds up in my chest and my clammy hands begin to shake. It begins with, "Tell me about yourself," and I start in on my slightly-eclectic professional background, explaining the positions I've held, what they've entailed, what I learned and how I would be an asset to their company. But soon enough comes the question I dread: "So you left your job in October of last year.What have you been doing since?"

I've dealt in the past with telling friends, classmates, colleagues and current employers about my epilepsy, but what's the protocol when it comes to telling future employers? It was never relevant before, but when I'm asked about what I've done over the past year, what do I say? Technically I can't be not hired because of my epilepsy as long as I'm able to perform the tasks associated with the job, but "technically" isn't how the world works. I'm proud of what I've done over the past year. I'm proud of the strength I found in myself and the relationships that grew when I learned how to depend on the people who love me. I learned about life; I learned about the world; I learned what it means to be human. But as soon as I say, "Well, I had brain surgery," the air in the room changes. I watch their eyes in slow motion, waiting to see which way they go: do they cloud over or light up? Am I written off as unfit, unable, or do they want to know more? Are they wary or intrigued? Have I just signed my own death sentence? So sometimes I just choose to omit one of the most formative years of my adult life. "What have you done over the past year?" In that split second I make my decision, "I've been writing. I'm currently working on a non-fiction book about surgery for epilepsy patients. I've also been doing a lot of work with the Epilepsy Foundation." I hold my breath. Did I make the right choice? I never really know.

When I first started this blog, my mom warned me that a future employer might see it and not hire me because of my epilepsy. I told her that that's fine because I wouldn't want to work for someone like that anyway. I still don't, but what happens when jobs are hard to come by? Do I have to put my financial needs above my principles until I can prove that I'm just as good as anyone else? I don't know. I'd like to think that my surgery wouldn't work against me, but unfortunately the world is full of people who don't understand that health problems can be overcome, whether you're seizure-free or not. Life goes on. People forge on. I know that, so why do I feel this anxiety gnawing through me from the inside out? Why do I feel the need to be discrete when I wear my scar like a badge of honor? A badge covered by dark curls, but a badge none the less. I just feel so conflicted.

Last night I realized something obvious, something plain as day: Google. Anyone who's interested in hiring me could easily find this blog, could find my writing, could read about all of my innermost thoughts. I suppose I should feel slightly exposed, but instead I feel relieved. I don't really have much of a choice, do I? Even if I don't talk about my surgery during an interview, it will be found, it will be learned. If they're gonna find out anyway, there's no reason for me to hide it. I never want to feel ashamed of my epilepsy. Never. For me, talking about it has always been my small way to spread awareness, one conversation at a time. Maybe now it means one interview at a time.