Racing neurons: living with epilepsy

February 12, 2011. Final blog.

2011-02-12T10:34:00.000-08:00

I have a confession to make. I hate using cliches, but sometimes cliches become cliches for a reason: they sum up a situation so well that they are used time and time again, and people always know what you mean. So, when I say I have a confession to make, I'm using a cliche, but I'm using it willingly because it's the best way to express what I'm about to say.

I'm all out of writing aspirations. My ideas have vanished. To have such inspiration in my life, which is God, Ryan, my travel career (oh yeah, I never told you about that...), and the many details in my life that make me so blessed - it's surprising that I'm done saying whatever it is I set out to say years ago when I started this blog. I know this blog had a purpose - and that was to make epilepsy awareness a priority in my life, and to inspire others with the same vision. I started out just trying to understand the dramatic change in my life, and I used writing as my outlet to do that. But, I'm no John le Carre, nor do I pretend to be. I know true artists who give themselves fully over to their talent, so much so that it makes them crazy. Lately, I can't say that I've given myself over to anything with that sort of commitment. In many ways, I'm very lukewarm and cautious about what I give my heart to. But, there was one time in my life when God made me a writer, and it was for HIS plan, not mine. There's one thing that always stops me in my tracks, where the very mention of it lifts my spirits, and the familiar smell of it causes me to pause and forget where I am. Rwanda.

In 2005, I went to Rwanda. I met a woman about my age dying of AIDS. She was beautiful. Her eyes were swollen with tears but she didn't cry. We could only communicate with our eyes, and we could only share our lives by holding hands. I remember the moment so profoundly that it still tears my heart when I think about it. I remember walking over to her with such a sense of inadequacy - I had nothing to comfort her with. We were getting ready for a group picture, and I reached out my hand to shake hers'. She took my hand, but when I thought it was time to pull away, she wouldn't let go. You can still see it in the group picture - her and I are in the front row, crouching together, clasping hands. I remember feeling like it was all a movie playing out in front of me. How could a moment like this really be happening? It felt so completely surreal that my heart couldn't take it. I couldn't let her in immediately. I wasn't ready to feel her pain, or to cry with her, or to tell her story to anyone else. But I buried it somewhere in my soul, never really knowing when I'd be able to dig it out.

Then, there was the 12 year old boy, whose ambition for an education beckoned me to reach into my pockets and try to help him. After all, he had the courage and the vulnerability to ask me to sponsor him. His name is Ronald. He is approximately 18 years old now. And I don't know if he ever achieved the education he deserved. I was unable to provide what I said I would, and I've hated myself for it ever since. Yet, in spite of that, the sole reason why I chose to give money towards his education was because of the feeling I had about his character - his courage, his ambition, his strength - which all shined so brightly in his eyes and smile. God is bigger than the small college budget that I had when I made the decision to hand his future back to God and admit that I couldn't follow through. I'm a firm believer that if you cling to something that you are not equipped to do, you are standing in the way of God's plan of giving the job over to someone else who is equipped to do it. It's not cowardly, it's Godly, and I've forgiven myself. Yet, I still think about Ronald, who, in every way, represents the hope, beauty, and resilience that his country emulates.

My very first full day spent in Rwanda was dedicated to learning about the effects of the genocide of 1994. We visited a genocide memorial, mounted on one of Kigali's many hills. This was yet another moment when I couldn't give my heart over fully to the depths of pain that the hills were still echoing. I walked beside the mass grave underlying a beautiful marble slab. Here and there were bouquets of flowers, and small puddles from the rain that had fallen only recently. You see, we were in Rwanda during the rainy season, which, as it turns out, is very rainy. The smell of wet earth constantly filled my nostrils and awoke my senses to the purest fragrance of what this land is, despite it's shortcomings and violent history. We entered a building where pictures with captions told the story of how the genocide was allowed to take place. The Belgians, the favoritism of Tutsis over Hutus, the sloppy transfer of power that automatically set the stage for ethnic violence - it was all there, spelled out nicely for us foreigners to read. Then, we entered memorial rooms for the victims. Shoes of all sizes, heaped together in a glass case. ID cards with pictures, stamped with the fatal word, TUTSI, although some did say HUTU. It strikes me still that, soul-less personal property, which I always believed to be temporary and irrelevant at the end of life, actually outlived the person who owned it. Their shoes and ID cards were all that was left, besides cold, lifeless bones. But the bones didn't really move me. I had the chance to walk into a mass grave, and see bones all around me, but that isn't what broke my heart. What broke my heart was the final room of this first memorial - the room where clothes were hanging inside a lit glass case. Baby clothes, men's trousers with a shirt dangling above with arms bent at the elbows. The ghosts of Rwanda - staring at you through the glass. This was the most alive these people would ever be again. This was the moment that my heart could finally grasp the tragedy - and mourning could finally occur. My heart opened up to Rwanda, and Rwanda entered and made a home. There will never be anything more moving, or more important, that can fill the space that Rwanda has created.

This is why I can't pass over a new book written about Rwanda. This is why I've never been able to really write passionately about anything else. When I said earlier that God made me a writer for His purpose, here's what I mean. I've only written one complete novel, and it was years after I visited the AIDS home and my heart couldn't absorb the intensity of my new friend who was dying before my eyes. One day, I had to do a creative project and submit it in order to graduate with honors. I knew I would write about Rwanda. This was my first literary endeavor, and I thought it would be about Ronald. After all, I thought that was what impacted me the most. However, when I started trying to write a story about the parentless, homeless children in Rwanda, it just wasn't working. It wasn't raw and vulnerable like I determined my novel would be. It felt cliche, it felt staged. And I thought I was failing. But then, my mom inspired me to consider writing about my dying friend who clung to my hand as though her life depended on it. I thought I'd give it a try, and before I knew it, I had one full page written. Then I had three. And in a matter of three months, I had a short novel about Grace and her daughter, Patience (this was the name I gave my lovely inspiration, because I don't actually know her real name, nor if she had children). This is the only time I've ever been a true artist and writer - because I gave myself over to it so much that it almost drove me crazy.

Moments like that are rare and God inspired. I'm coming to terms with the fact that, for some reason, He doesn't want me to be a writer right now. I've spent months writing blogs about epilepsy, and then I tried to take it a new direction, which led to borderline narcissistic ramblings, and eventually, to a general complaint about Facebook. I'm ready to say that this blog is done. Perhaps another time I'll be inspired by God. I hope that when that time comes, you'll be here to join me in it. For the time being, I just wanted to write about the one topic that's easiest for me, because shockingly, I've never blogged about Rwanda. After six years, though, I guess you can see that it's never too late.

So, farewell, my four followers. This blog is done.

The State of Removal.

2011-02-03T08:17:00.000-08:00

It's time for an honest and open dialogue about Facebook and it's function in our lives. Let's say that a rigorous FB user to be unnamed has 203 friends. That's a lot of friends to be had. However, on a seemingly normal day, this committed Face-bookie logs in and notices that she now has 202 friends. 202. The Face-bookie breaks into a cold sweat - and feels the embarassment in her gut as she starts frantically wondering, who? why? She opens her list of friends and starts scrolling down. Who's the missing link? She can't seem to find anyone missing. Then, she remembers - that guy she met in Bioethics class who was obsessed with Josef Mengele and his "experiments." Her feelings were hurt - even though Heinrich was weird - what did she do wrong to lose his FB friendship?

She reviews every detail of their "friendship." Where did she go wrong? Surely it wasn't because she was rude to him - that's definitely not it. She listened to his rants about Mengele with attentive politeness. It couldn't have been because she got married and changed her last name - although that would be convenient if he didn't remember who she was based on her profile - but the day of her wedding, he wrote in huge block letters, "CONGRATULATIONS for giving in to eternally blissful slavery" on her wall! Was it because he was doing some housecleaning and as a result adopted the "less is more" theory? But if so, why her?? Why this nice Face-bookie who ate lunch with him two times and picked up his pen when he dropped it on the floor that one time in class? It just didn't make sense.

On November 17, 2010, National Unfriend Day happened. Jimmy Kimmel promoted it. I miraculously survived mostly unscathed that day - and I didn't partake in the unfriending. It seemed like such a logical, marvelous idea - but there are consequences to unfriending somebody. There's really no turning back. Face-bookies like the loyal user above are running rampant with these misconceptions that FB is more than what it actually is, as Kimmel pointed out. It's not a substitution for friendship, because friending someone on FB means virtually nothing. It's simply "social networking," right?

Obviously not, because then people wouldn't remove friends out of a sense of superiority or revenge, which often happens. I removed a rather nice guy two years ago because he didn't invite me to his wedding. Granted, he invited my parents, and I grew up with him - so it's really not so undeserved - but I regret it anyway. When Facebook is the lowest form of friendship you can have with somebody, and still, someone would remove you, it's equivalent to them telling you, "I want absolutely nothing to do with you - no photos, no updates, no statuses about your sick dog - get out of my life!" Isn't it? Personally, I'd rather not run the risk of making someone believe that I feel that way about them (unless I do...). Of course, there are valid reasons to remove a person from your FB pool...for example, if you meet each other's eyes in the school lunchroom and there is no friendly exchange whatsoever - just cold staring - that deserves unfriend action. However, frequently the reasons are less than deserving.

I had one person defriend me last year because I didn't get her a bachelorette party gift as quickly as she wanted me to (or at least, that's my theory). It's amusing how this social networking site, in it's cold aloofness that makes it safe to be friends with people you hardly know, still has the capacity to cause pain. Or rather, just plain annoyance and stress. It hardly seems worth it to chase somebody down and ask them, "Tell me why you removed me from your Facebook! Why??", because, if they did, they're not really your friend and probably won't have a satisfying answer because of the elementary nature of the social networking site. You can hide certain sections of information from people. You can talk behind their back in a message and then write "Have a great day!" on their wall. You can block them, unblock them, and block them again. You can browse their pictures, hate their choice of outfit, and then click "Like" when they are posing with Santa Claus. Basically, Facebook is high school again. We dismiss good manners and revert.

Is it really so authentic? Do we really need to have 400 friends we don't talk to? No. But I'd rather not disappear from 400 people's pages leaving them with the cold embarassment that accompanies it. Spread love. Don't reject people for petty reasons.

Be more authentic by being less authentic. Show your character in your Facebook etiquette. That's all I have to say today.

How Long?

2010-06-11T10:57:00.001-07:00

I remember hearing about an oil rig explosion which killed 11 workers. That was sad, and I wondered who they were and if they had children. But I thought that would be the end of the story. Before I knew it, there was an oil spill of immeasurable proportions, and the news reports grew more and more grim. People started pointing fingers at the oil company and the government, while many pointed the fingers at every person who drives a car for allowing a disaster like this to occur. Instead of pointing fingers at whose to blame, let's focus on the aftermath and how to decrease the devastation.

You see, I've found that MSNBC and CNN, among others, think that all we need to know is that there is an investigation going on to determine who to blame, that BP has tried some new strategies, and that the president wants to kick ass. Well, I think the people of Louisiana are telling a different story - and instead of taking what MSNBC and CNN feed us, we should listen to what's going on in Congress - we should hear for ourselves what's being said and who's saying it. Unfortunately, though, the closest we come to that, many times, is C-SPAN. We should pay attention to the fact that the leaders of Louisiana are trying to solve this problem and that the powers that be are hesitant to give up control to the people who have the will and determination to actually get something done. Louisiana is at risk of losing it's precious marshes, and life has all but been sucked out of them already.

I'm wondering why our nation isn't in a state of emergency. And I echo the question of one of my dear friends when she asked, "Where is Sean Penn now?" I've noticed that he's not floating around in oil infested water. Why is that? Where is the support of the rest of the nation? Quit arguing. Quit threatening to kick ass. Get rid of the beaucracy that holds up action and renders plans useless because they are approved too late. Every citizen in this country is watching the pathetic response to this emergency, and we should be enraged. So do it. Be angry. Protest. Wake up from the apathy.

Enough is enough.

Those like me.

2010-04-29T11:24:00.000-07:00

I recently discovered epilepsy.com, a website founded by people living with epilepsy - in other words, those like me. I am in love with this website. It's helping me to get outside of the scientific and into the hearts and minds of others who are living with the condition. I know I said that I'd make this blog into a blog about other things besides epilepsy, but it turns out that I'm a liar. I find myself nodding in agreement or posting an answer to someone else's question on a daily basis - this is such a fantastic gift for those living with epilepsy.
One of the things that I'm amazed about is how I've come to embrace epilepsy - I didn't ever think that I would like being epileptic, but I think I do....does that make sense? Embracing what others consider a disability is unusual - but more importantly, it's empowering. As I read others' stories about their experience with epilepsy, I'm amazed. I have so much to learn about my own affliction - I thought I knew everything, but I don't! And ironically, two years of learning to embrace a condition has caused me to learn a great deal about it, and it's allowed me to give feedback to other people's comments and answers to their questions. It fills me with the deepest satisfaction to know that I'm interacting with my peers. They may be 66 years old, or a mother of three, or a college student going through nursing school - and I can relate to all of them.
In particular, there have been many discussions about leviteracetam, or Keppra, which happens to be a medication that I'm intimately familiar with. I've read about others who are scared of taking the medication because of what they've heard about it - and I've read horror stories about how leviteracetam messed up people's lives, and so on. The pattern I'm noticing is the amount of despair exhibited by so many who visit the website - the tone of their questions suggests shame, anger, humiliation, and sadness. I remember a time in my life when I felt the exact same way. In so many ways, I'm a neurologist's dream: the medication works for me. But there's story after story and comment after comment that screams the opposite: no medication works for them, and they hate being epileptic. Part of me wishes I'd found this site soon after my diagnosis, and yet I'm so happy that I've only found it now, because had I been exposed to the depression and angst of so many others, epilepsy might've gotten the best of me.
Do you ever notice how the obsession with despair blur all possibilities of hope? Epileptics need to vent and relate to others who understand them, but sometimes that's where the therapy stops. As a result of this revelation, I've got to commit myself to being positive and offering encouragement whenever the opportunity arises. After all, I think that's what I may be good at.
Maybe God chose to let me have epilepsy so that I could help others who have it. I think that's why He likes me better as an epileptic.
We all have afflictions - and it varies for everybody, but you can only conquer the affliction by embracing it; not running from it. Acknowledge every part of yourself, not only the parts that you like. =)

Always hungry.

2010-04-15T07:48:00.000-07:00

Who I am is defined by what I do. Literally. Usually, this is used as a lesson in a movie script or as a point of encouragement, but for me, it's unsettling. I define the very reason for myself based on how I spend my time, where I work, what I do, and how long I do it. I reason that my purpose is wrapped up in what I create around me and how I use my mind, body, and soul. I'm never fully settled, or content, in any point in my life. I always want to be more.

That's why, when I have a decent job, and a great life with my husband, I still beat myself up for not going the extra mile to do something extraordinary. I don't want to leave this world as just an ordinary person. I want to do it all. I want to travel to far off places, help as many people as I can, try everything at least once, and learn new things at every turn. For some reason, wherever I am in life isn't enough for me to be satisfied. I don't feel that I'm living the dream. I think I'm holding back from what I really want, and I think I've done that for a long time. I wanted to do respiratory therapy, and now I'm not so sure. The drive is still there, but I fear in my heart that even if I achieve that goal, I'll still have the feeling of standing at the far edge of a field, ready to run across to the other side and resenting myself for pausing. How would it be if one day I woke up, and realized that my life is ordinary?

This is the one hurdle I've never been able to jump, and it's been the unrelenting weakness I've felt my entire life. I achieve one goal, and I'm on to the next without really taking that first goal very far. I'm all about achievement, proving myself - to myself. I don't really understand it - I just know that I'll never be good enough for the bully inside me. The ironic thing is, I've been complimented on what this bully has brought out of me. People think I'm an extremely driven person, and the truth is, that I'm actually a tormented driven person. People admire my drive, I admire other's contentment.

I thirst for God, and I believe that the answer to my woes lies in Him. But I'm having a difficult time making that first step back to Him. I never fully give myself away to Him - I hold back and try to maintain control because I don't want to lose it. Even in my years of being extremely close to the Lord, though, I still had this unquenchable hunger. I wish I knew what I was hungry for?

Just a few odd thoughts for the day.

Haiti.

2010-01-14T11:47:00.000-08:00

Dear Haiti,

I'm thinking of you. I didn't think much of you before, I'll admit. My focus has been on other times, other places. My Haitian friend always told me life was hard there; but she certainly loved you very much. Now the whole world is watching. It took a 7.0 earthquake to get the world to stop and see you - a beautiful island, independent, and torn by tragedy and corruption. Now books will be written AND read - about you and your people. Your tumultuous history, your struggle for sovereignty and freedom. The wealth that was deprived you. I'm sorry that it took so long to notice - that it took so much death and destruction for us to notice.

I want to go to you. I long to go to you. Nothing would please me more than to be there, sifting through broken walls and dismantled lives, side by side with you. Why it feels so close to my heart, I don't know. Why I feel like I've lost a distant cousin, I don't know. Your children, siblings, and parents will be missed. I hope you find all of them. I hope that no one gets lost in the rubble because it's too much to clean up. As you travel by foot to the hospital in search of your friends, know that the delay is not because they are unimportant. The world is watching, waiting, and praying that you will find your friends and family. The doctors are doing everything within their abilities to save their lives.

I'm sorry that everything is so scientific. I'm sorry that the day after, an article is published about why Haiti is prone to dangerous quakes. I'm sorry for the unintended "I told you so" attitude that is filling the gap that should be filled by prayer and compassion. When you go to your home, and see it in a pile, I pray that God will give you the clarity to remember that you were able to survive it's collapse and that God is your home. He is your roof, wall, and floor that will never collapse. When you see your child's school on the ground, remember that learning happens everywhere. Learning doesn't need walls. And if your child is among the missing, you know where to look. Remember that love, like learning, has no walls. Your love for them will help you to endure through the hours of recovery. You will not sleep, nor will you stop to eat. You will move planks, boulders, metal, and glass. You will cut your hands and feet but will not notice. You will hear the cries of other parents, and you will brace yourself. That afternoon you saw them - the memory of their tiny voice and beautiful smile renews your strength. You will find them and hold them again, even if they cannot hold you back. But when they are able to put their arms around your neck, and you feel the warmth of their body, you will be whole again. How I wish I could help you find them.

Husbands, wives, lovers - as you search all of the likely places for your partners, be prepared. Their workplace is eerily quiet. As you survey the scene, a hole grows in your stomach. But you hear a familiar voice calling your name. Blood rushes to your skin and you run in the direction of the voice. When you can't find them at work or at home, you go to the hospital. There are many bodies to look through. When you find them, you will take a moment to remember the beauty and color they added to your lives when you see their empty faces. How I wish I could comfort you. Children, when you said goodbye to your parents that day when the earth shook, remember that YOU are their purpose. They'd be pleased to know that you survived. Don't stop searching for them. Don't give up hope. Soon you will know, and when that time comes, you must take care of them.

Brothers and sisters, as you run to each others' houses in urgent hope, what you see won't make you stop crying their names and tearing through the ruins. When you hear them quietly call your name from beneath the mess, your heart pounds through your chest and you dig until your fingernails are nearly coming off. When you don't hear them, and you can't decide where to start digging, you take your best guess and it won't always take long to find them. I'm sorry that no one is there to help you.

As you're pulled from the wreckage, Haiti, I'll be watching and waiting. You're cut up and bruised, but breathing. You will never forget that day, and you will use that day and all the days following to build a better future. All I can do is pray for you. I wish I could do more.

Sincerely,

Missy

Dr. Laura and me.

2009-12-11T17:39:00.000-08:00

At the risk of sounding like a complete jerk, I'm going to bring up something that I find both sad and amusing. Dr. Laura's radio show. I laugh almost every time I listen to her - either about something she says or the ridiculous reason that someone is calling in. "Should I dump my boyfriend, Dr. Laura, if he's cheating on me?" "You should've dumped him before you let it get this far. It's all your fault that you're miserable now." "Oh, Dr. Laura, thank you so much! That's exactly what my sister said, but I wasn't sure, so I called you...."

Or...I like this one better...

"Dr. Laura, I'm trying to get my son involved in sports, but he's not into sports, and he has a hard time making friends."
"How old is your son?"
"He's nine."
"Well, at that age, he should be more social. And you say he's into artsy stuff? Have you thought that perhaps he's gay? Children at that age aren't that shy unless they're hiding something...."

The audacity of that woman! I can't BELIEVE some of the things she says, and the way her needy callers salivate over her common sense - or completely wacko - suggestions. It's actually quite infuriating once I stop laughing and really consider that these people truly rely on her for the decisions they make in life. And some people call her about some enormous, life-changing situations. When I disagree with her, which is half of the time, I want so badly to call her and tell her on the air....but what's the use? She would whip out some sort of psychological babble that would end up making me into the weirdo. So I'll blog about it instead.

Her show actually got me thinking about something. A woman called in and asked if she should support her husband as he makes a career change, even if that means they wouldn't be able to buy a house for their small family. Dr. Laura actually said to her that it was her husband's job to HAVE a job and to keep it even if he hates it, because a job isn't supposed to make you happy, it's supposed to pay your bills. Huh. I wonder how much Dr. Laura gets paid, and whether or not SHE likes her job. And Dr. Laura was sure to include that her husband was happy in his job - but perhaps he didn't have to make a career change to be happy. This was one of the many instances in which my jaw dropped while listening to her show. If jobs were meant only for the purpose of making money - then Compassion International wouldn't be around. Not-for-profit humanitarian organizations wouldn't be around. The people who begin these noble causes around the world don't do it so they can support their family in their house-buying pursuits - they do it out of a calling. Can't a job be a calling? Isn't it worth it to make sacrifices to fulfill a dream? Sure, some people work to survive, and it doesn't matter to them whether they like their job or not. However, I think Dr. Laura missed the whole point. If a person senses that their job is a dead end for them, and they find no fulfillment in how they're using their time away from their family, that's what I call a symptom of not living the dream. Because regardless of how much money they make, they ARE sacrificing forty hours per week or more, advancing their bosses' dreams. It seems a little counter-productive. Can't a dream extend beyond stability?

Take my husband and me, for example. We're both on the brink of life-changing decisions. And trust me, it's scary. We're looking at a state that is totally different than the one we're living in - he has acquaintances and business partners there, but that's about all. Our family and friends are here. I too, am making a career change. I'm going into the medical field. Trust me, it gets petrifying to think about. I'm completing my EMT-Basic certification requirements really soon, and then I'll be able to practice. The next step is more school. I'm planning to go into respiratory care, and if we're not totally broke later, I want to specialize in a very specific topic of international health: tuberculosis. My husband, on the other hand, is embarking upon his life-long dreams of keeping the family business alive and doing what he does really well: entrepreneurship. All the while, there are bills to pay, and incidentals which we haven't totally figured out yet.

Basically, we're going our own way, and I like that.

A good day for poetry.

2009-10-22T21:05:00.000-07:00

Envelope Poem

I trotted through young life to find,
That there’s nothing here for me.
This world is cruel and I feel used,
And I just want to be free.

In our lives down here we hate ourselves –
Yet no one really knows.
When we talk about what troubles us,
We feed our shame with clothes.

Many times I stay up late and feel
Like nothing’s going right.
As if right can be defined by words –
When I roll over at night.

Contemplation brings up nothing new
But for long past regrets.
When wisdom comes as a poltergeist,
I hold it to my chest.

Days slink on and the nights are long,
And the doubts are never quenched.
I live for times of joyful noise
But I find my hands are clenched.

I keep looking for the blemishes –
Empty smiles and dry words.
If I study hard enough, they’re there,
Amongst the happy hoards.

Are we all depressed and too helpless –
For anything to change?
I want so much to scream and cry,
And let go of this rage.

But manners constrict my heart so much,
I shrug and look away.
The day when I step outside myself
I’m not sure that I’ll pray.

It’s time for resolution, you say –
As I wipe away a tear.
A pat on the back and fading smile,
The moment disappears.

Pain suspends, yet seldom vanishes,
Through the joint in our souls.
To this secret place we will return –
And desperately unfold.

-me.

You'd better not plagiarize my work. ;) I wish you all luck as you spend your days trying to figure out what the hell you're doing on this planet. I'm still working on that one.

On June 21, 2009 and beyond.

2009-09-12T10:41:00.001-07:00

Hello friends,

On June 21, 2009, I celebrated two big milestones: six months of marriage to my husband; and one full year without seizures. That was an amazing day. One of the most distinctive things I've realized about a year without seizures is how different life really is without them. Even though I wasn't prone to convulsive seizures until last year, I still recall the feeling of suffocation and panic that would come over me at unpredictable hours. Sometimes I wonder how bad it really was to have the episodes - I've considered going off the meds and living with the mini seizures. This is a ridiculous suggestion, though. I don't want to go through that again, and with the knowledge I have now, I'd be anticipating seizures all the time, which might make the panic worse and the symptoms more intense. No, I won't actually go off the medication, and I don't have the luxury of knowing what I'll face 20 years after consistent, daily use.

But, on the other hand, 20 years of uncontrolled seizures would cause some problems too. I have to take my pick, and I suppose for now, it'll be for medication.

I don't have much to say, except that this blog has been an excellent outlet for me over this last year. I wish that I'd written more - that I had more knowledge to offer. But, I don't. I've learned to stop referring to the epilepsy as "my" epilepsy - because epilepsy doesn't define my life. Talking like that only takes the emphasis off the condition and places it on myself - as if I chose to have seizures. It's like treating the condition as a pet, or a family member. Frankly, I don't consider epilepsy something to cling to - as depressed people might cling to depression as their best friend or worst enemy. I've done this plenty of times, with both epilepsy and depression, and I'd encourage people not to let that become a habit. I remember a conversation I had with my brother earlier this year. He saw that tendency in me; and he suffers from a condition that few people can understand, so his advice really hit home with me. Epilepsy is a condition that I happen to have, not apart of who I am. This is contradictory to what I've written in prior blogs, perhaps, but it goes to show that a few months of introspection have taken their course. I haven't written a blog since May, and I think I viewed my condition differently even back then than I do now. That wasn't very long ago at all.

If I continue this blog, I probably won't focus completely on epilepsy - but I'll come back to it now and then. I hope you'll humor me and allow me to take this blog onto the next level: my metamorphosis. You can start rolling your eyes now, if you want to. =) I know my life isn't that interesting, but I'd like to add some tidbits of what else has been going on which have affected me. It'll be encouraging and cynical; amatuer and provocative; spiritual and worldly. I think God is shaping me as I would a piece of Play Doh - letting it squish between His fingers or rolling it to form a sphere. Wasn't that a cheesy metaphor? It's only because I work with children now. ;)

As Dispatch's Pete Francis would say, keep living your dream.

Just some thoughts...

2009-05-12T15:15:00.000-07:00

So, I'm approaching June 21st - that marks a YEAR since my grand mal seizure!!!! That shows that the medication has been working like it should - and I have virtually NO side effects from it (except for the occasional vertigo, but that comes and goes with fatigue, caffeine intake, and heat). I feel like there should be some kind of celebration - I'm looking forward to that day which not only marks a year since my last seizure, but also my six month anniversary with my husband! Wow - that's a HUGE day in the life of me. Perhaps you'll have a glass of wine to celebrate with me....

Anyway, I was thinking about something today which I've only touched on briefly in prior posts. I now have a full time job, doing strenuous, physical activities (no more sitting behind a desk for me!!!!), and since I foresee being with this job for awhile, I've wondered recently, should I tell them I'm epileptic, just in case? That's a big JUST, though, since my medication is working beautifully and I'm not expecting to have a seizure on the job, but, it's sort of difficult to pinpoint whether or not I really have anything to worry about. See, it all goes back to redefining normal. COULD I have a seizure under these working circumstances (i.e lots of time in the heat, lots of walking, lots of stress)? Since I've never had a job quite like this one before, it's hard to know if I'm vulnerable or not, and a job like this is supposed to make the average person fatigued - it really is quite strenuous. Sometimes I get really tired and I have to wonder, is it my medication that's making me tired, the heat, or the standing around for hours with nothing to do that sometimes happens in the early hours of the day? I think any of these things could cause someone to get fatigued, but I also have medication to factor into the equation, and one the side effects is drowsiness. However, I tend to believe that I'm already accustomed to these side effects and my body has fully adjusted.

I just don't know if I need to sit down with a manager and explain that I have a history of seizures - especially if it's been almost a year since my last one. At the same time, though, I can't foresee the future, and there's no telling what lies ahead for me - perhaps all the fatigue will get to me one day, especially if I'm ill, and I could potentially have another seizure. Also, when hormone levels change drastically, that could lower my seizure threshold and I could have one then. So, it seems like it would be a good thing to at least give a manager that I'm comfortable with a heads up - but I can't help but wonder if they'll worry about my ability to handle the job if I let them know. I guess we'll find out.

Anyway, that's all I have today. I haven't written in awhile, so I thought I'd take some time to jot down my thoughts.

Epilepsy and Women

2009-04-10T18:27:00.000-07:00

Like everything else, theories often become truth when there is no direct contradiction. Epileptics, for some reason, are the victims of whacko theories and ideas. I'm not trying to be redundant, because I know I've mentioned this before, but just for the heck of it, I'll mention it again. There's no greater example of this than the obsessive need of most of these sources to include how epilepsy can mess up women's lives. Now, I'm not saying that women don't face extraordinary challenges when they are epileptic - there are definite risks for them that don't necessarily effect men, such as the risks of pregnancy. However, you can't look up the term "epilepsy" without finding some extra link or chapter about women and epilepsy. Let me rattle off a few things I've read about that have freaked me out:

Women with epilepsy are more like to experience sexual dysfunction, such as vulvadynia.

Women with epilepsy are at risk of giving birth to still born infants.

Women with epilepsy have a more difficult time becoming pregnant - and if they do, are more prone to preeclampsia and miscarriages.

These are just a few worth listing. The first one was directly contradicted by my neurologist. The second and third both came from the same website and can also be found on other websites. Everyone wants to talk about the risks epileptic women face when they try to live normal lives. When I first started researching epilepsy and realized with certainty that I had it, the sexual dysfunction theory really sucked, and although I tried to hope for the best, the thought was planted in the back of my head. Being engaged and all, I was naturally concerned. What I'm wondering is, why is there such a pre-occupation with women and epilepsy? Epilepsy effects all people differently, regardless of gender, and so much of this is based on theory rather than hard evidence. Its very difficult to actually PROVE that any of these things are true for ALL women with epilepsy, but many sources will speak of these ideas as facts rather than as theories. Be aware of what you read and hear - and before you start to believe it, ask your doctor. However, it's wise to get a second opinion.

A psychologist friend of mine said that when a doctor misdiagnoses or speculates what may be wrong with a patient without officially diagnosing the patient, more damage is done than what the actual problem causes on it's own. For instance, if a gynocologist tells an epileptic woman about a certain sexual disorder that has links to neurological conditions - that woman may go home and research this disorder and fear that she has it. She may even develop the symptoms of it, simply because the thought has been planted in her head that she is at risk for it. This is partially the woman's fault, of course, because you can't believe everything you hear. However, it's the doctor's responsibility to make an accurate diagnosis - and not to cause the patient to diagnose themselves. Because epilepsy is surrounded by mystery, even among the educated, people can theorize that because a few women had this problem who were also epileptic, there may be a link there that can cause other epileptic women to be at risk. You see the problem with this?

So, what's the difference between these online resources that try to make claims about epilepsy that may or may not be true, and my blog that questions their validity and makes claims based on my personal experience that may or may not be true for everybody else? Well, my purpose is to do the opposite of what many of these online sources do. You can't generalize when it comes to epilepsy - and I cannot stress that enough. Every person is different because every brain is different. Every seizure is different. No two epileptics have the exact same experience with their condition. What these online resources try to do unsuccessfully is cover a complex condition by trying to say as much about it as they can, often with very little statistical evidence to back it up. It's just like any other health condition - online resources serve as more of a guideline to help a person get an idea about a disease or condition - but theories often sneak in and claim to be based on fact.

Epilepsy is one of the most stigmatized and singled out conditions out there. In fact, it was on a website for women's health that I found a section devoted to how epilepsy can effect pregnancy. There's nothing wrong with mentioning the risks of epileptic women, because it's good to be aware of theories and ideas. But, how these things effect the psyches of those reading has gone too far, and the pre-occupation with the subject only creates more stigmas that epileptics have to try and ignore.

While some of these claims may have validity, there's no need for epileptics to constantly be singled out. Shallow research often leads to paranoia, particularly for the epileptic woman.

Put something in her mouth - quick!

2009-02-20T21:39:00.000-08:00

A blog devoted to epilepsy and seizures wouldn't be complete without a token discussion of first aid for seizures. What do you do if someone near you starts going into a seizure?

A common misconception is that placing an object in a person's mouth will keep them from swallowing their tongue. First of all, it's impossible to swallow your tongue. If that were the case, how many of us would've done that already in our sleep? Tongues weren't made to be choked on, see. Another reason why someone may think putting something in a person's mouth during a seizure is for the sake of their tongue's safety. During a grand mal, its extremely common for someone to bite their tongue. It's also common for a person to involuntarily chew on their tongue during a seizure. Heck, I did! My tongue was sore for days after my grand mal seizure - I don't know if it was from a sudden bite, or from chewing - but nonetheless, it hurt afterwards! However, its better to have a sore tongue than to possibly choke on something else placed in my mouth with the intent to keep my tongue from being sore. Not to mention what this could do to your teeth...ouch.

If someone goes into a grand mal - have them lay on their side with something soft under their head. DO NOT hold them down - and be sure to remove their glasses or anything else that could get broken or pose a risk to them. Time the seizure. Call 911. Keep other people away from them. Its actually really simple - anyone could do it. You can look up this information anywhere, too (Epilepsy Foundation is my primary source for this)- be prepared because you never know when you might be in a position to help someone.

As far as complex partial seizures go - well, that's a little tougher. You can't always tell when someone is having a seizure just by looking at them. A person may be having a seizure while only appearing to be slightly disoriented, or lost. Wandering, blank staring, speaking jibberish, unresponsiveness, involuntary body movements, chewing...the list goes on. It's not always very obvious, though. However, if you suspect that a person is having a seizure, monitor them. Talk to them to test their responsiveness. Reassure them that they'll be all right. Time the seizure, and call 911 if they don't recover, or if they remained confused. I wouldn't have thought about this, but among these other tips, remind the person of the date, time, and where they are when they seem coherent enough to understand. The Epilepsy Foundation has all these tips on their website - and I have information sheets for this hanging on my refrigerator in case my husband ever finds himself in a situation where he needs to assist me.

I heard an interesting thing the other day from a friend. She told me to stay away from artificial sweeteners (which I'll do, HAPPILY, because they're disgusting), because artificial sweeteners have been thought to trigger seizures in certain people. Anyone else heard of this? There are so many things that can lead to seizures, I wouldn't be shocked if this were true. Anyway, that's all I have for tonight. Tune in next time for something else that you may or may not know about epilepsy and seizures.

Wait - caffeine's OK?

2009-02-11T12:06:00.000-08:00

In general....

OK - like I've said, I'm still learning all there is to know about epilepsy - and one thing I can't stress enough is that the plethora of information available is often questionable in accuracy or simply too generalized. There are so many different theories and ideas surrounding epilepsy - and this blog of mine can't possibly cover all of them - but, I'm trying to deliver sound information, which means taking a step back at times.

I'm relying on two main sources from now on: the National Institute of Health (there's a nice little slideshow all about epilepsy that you should check out); and the Epilepsy Foundation. As it turns out - caffeine is equal to stress and hormones in so much as it may be a trigger for seizures but it's not a risk, in general, for all epileptics. There's plenty of reasons to limit caffeine intake, but seizures isn't necessarily one of them unless an individual is exceptionally vulnerable to it. Now - I know that caffeine effects me in a profound way - which may mean that caffeine is one of my triggers - but I'm not even sure about that. However, caffeine and anti-seizure meds are not a great combination - but that's putting it generally. There I go, generalizing. =)

Remember that I'm not a doctor - but I've been going back to my sources and have seen another blunder in my reports: Alcohol CAN cause seizures. I stand corrected and have now been sacked for a second time on this issue. This time I'm confident about it. So - the caffeine and alcohol blog that I wrote awhile back may not necessarily be altogether wrong: i.e, individual cases vary in regards to caffeine and alcohol intake making it possible for some and dangerous for others. But, overall, revision is needed. And, I made a huge oversight when I wrote about do's and don'ts - which the NIH reports reminded me of - I neglected to address the issue of illicit drugs and seizures. Illicit drugs have been known to cause seizures - in fact, that's an understatement. Aside from being illegal and all; epileptics should stay far away from substances such as speed, cocaine, or anything in that realm of evil. Yes, I just called it a realm of evil (I've got strong feelings about illicit drugs). However, to clear up any confusion: epileptics aren't the only people who are vulnerable to seizures from illicit drugs - ANYONE can have a seizure from the use of cocaine, for instance. It's natural for the body to react dramatically to abnormal substances that mess with the body's function - and a person can go into a seizure just by using a drug that directly interacts with neurological functions. Look it up on the NIH website - in fact, this is such an understood concept that you can find information about this practically anywhere.

So - don't do drugs. Alcohol, although not illegal - can cause problems with neurological function and provoke seizures - so, epileptics, don't drink; and people who do drink: watch yourself.

OK - now that I've addressed that; let me re-emphasize a key point that I want all people to remember. One seizure doesn't mean epilepsy. Two seizures doesn't even mean epilepsy. Let me explain: seizures can be provoked by brain injury, infection, substance abuse (or use), and fever. ANYONE can have a seizure. The healthiest person you know could have a seizure. The poor, the rich, the active, the inactive, the liberal, the conservative - ALL can have a seizure as a result of a multitude of causes. Two or more unprovoked seizures, though, can mean epilepsy. Unprovoked, meaning a seizure occurs and there's no infection, injury, illness, or substance use that can be named to have triggered it. However, just one unprovoked seizure doesn't necessarily mean epilepsy either. Only tests and time can determine whether one is epileptic - and even then, sometimes, a person may be put on medication "just in case," even though they may not be epileptic. It's so difficult to diagnose epilepsy in many cases. Mine was easy - I made a connection between the episodes I had on June 21st with episodes I'd had in the past, and from that, I was able to determine on my own that I have epilepsy. To make it easier, my EEG came back with seizures actually recorded on it - meaning my seizures hadn't ceased even while I was on medication. My doctors didn't question it - and I easily believed it. In other cases, though, its not so clear cut.

Kids and teens who have seizures don't know whether or not they have juvenile epilepsy or generalized epilepsy until they reach adulthood, when juvenile epilepsy normally edges off. This means that a person may have seizures as they grow up and there's no way to tell if it'll ever stop until they get to a certain age when they undergo trial periods and testing. Can you imagine how chaotic and uncertain this must be for people with that condition? Or even more confusing, some people have seizures that may have been provoked, although the cause may be unknown; but, since the cause is unknown, they may be labeled epileptic for lack of a better explanation. Does this make sense? It's an endless cycle of questions and confusion - but my doctor explains it much better than I do. This is only my understanding of it, based on people I've spoken with and my own experience.

Now that my head hurts - I'll leave you with what I've written today. Forgive me for being over zealous with my findings - but, definitely do the research if you're interested in anything I've said or if you wish to compare sources. It'll teach you a lot.

Seizures...and driving.

2009-02-03T08:42:00.000-08:00

Before I get to the topic for today, I have to correct an earlier blog in which I pointed to alcohol as a risk for seizures. "Alcohol actually increases seizure activity" hasn't been proven - but the affects of alcohol, combined with seizure medication can cause extreme drowsiness, dizziness, and confusion. High amounts of alcohol, though, like caffeine, can offset seizure medication and make a person vulnerable to them although alcohol is not a direct cause. Sorry for the confusion.

Now, seizures and driving. Every state has a law concerning seizures and driving priveleges. In Texas, one has to be seizure free for six months before they can legally drive again. In other states, the seizure free period can be a year or more. Luckily for me, though, I only had to wait six months. While every case of epilepsy varies, let me tell you something about my perspective on this driving rule.

I'm prone to seizures when I'm inactive; i.e, when I'm about to sleep, or lying down. On June 21st of last year, I may have been having seizures all day, but the second I got into my car, my mind was focused on driving, and I didn't even have an aura while behind the wheel. I met my friend at a restaurant, then drove all the way back home. It wasn't until I sat down at home and closed my eyes that the next seizure happened. I don't believe that it would've been safe to drive while I adjusted to my new medication within the first three months; but once I adjusted and knew that I was doing better, I would've been able to drive without any problems. I didn't quite wait until the six months was up - but that was for good reason - its simply unrealistic for someone to work downtown without a car in this city without having to rise at 4 a.m. There are those who do it, but I simply couldn't. So, I started driving a little earlier than I was supposed to, because it was in my best interests.

The six month rule is applied generally to all who suffer from a seizure at least once. And for those who have seizures everyday, driving is completely out of the question. This rule exists to protect the individual with the seizures, as well as all drivers on the road. Although I could've driven earlier than six months after my seizures - I only know for sure after the fact that I didn't have another seizure - my doctor couldn't have predicted when my next seizure would be. There's no way to determine when a person will have another seizure, because seizures are triggered by many different factors. However, I assumed that, while driving the car, I would be seizure free. My seizures occurred when I was inactive and unfocused - not when I was actively concentrating on something. However, the six month rule still applied to me because I posed a risk to other drivers. If I were to suffer a grand mal seizure while driving - I likely would've gone off the road and caused injuries to myself and others, and if it were within the six month period, I would've been fined just for driving.

So, the law says that the risk period ends after six months, but considering what I've said so far today and all throughout my blogs - would you say that's a logical suggestion? The risk doesn't end with the six month period. The risk never ends for epileptics. Epileptics who don't receive medication or therapy for their seizures should technically never be permitted to drive - but, according to the law, they only have to wait six months. The point I'm making is that there's no regulation to insure that I or others like me don't drive within the six months - and what's to say that we won't have a seizure while on the road during the seventh month?

Why is there a six month time period in Texas, and a year long time period in Illinois? I'm not sure. Epileptics in Texas are no different than epileptics in Illinois - but the rules are different.
This time period is to give the medication time to correct the problem - and six months to a year without seizures are considered successful in the law books - but what about unreported seizures? That's where it gets slimy, because many epileptics won't report additional seizures for fear of losing driving priveleges. See? The law is a formality only - a formality that can cause a hefty fine, though.

Now that I've just railed the driving laws regarding seizures - how can it be remedied? It would be nice if every case was able to be evaluated based simply on the individual's seizure patterns. Since its not that way, though - we'll just have to live with the unrealistic determination that time will make an epileptic less of a threat to other drivers.

Not if they don't take medication, and definitely not if their medication doesn't work. Wouldn't you agree? I didn' t wake up on December 21st (my wedding day, ironically) and feel healed of my epilepsy. Six months, a year, three years...they don't make a difference. The state has to address the issue, though, so laws are passed to lessen the risk in a general way. Then why is it that epileptics in Illinois are safe only after a year, when they could relocate to Texas and be safe drivers within six months? Hm.

Who do I tell?

2009-01-22T13:56:00.000-08:00

One of the most surprising aspects of being epileptic is how it changes one's relationships with other people. Personality, temperament, rationale, and emotional response seem like the unchanging intangibles - but that's not true. Some of these things can be altered by a life-changing experience. For instance, my temperament and rationale have all too obviously changed over the last year. My emotional responses are harder to control and my self-worth has been put into question way too many times for my personality to NOT be affected.

But - its not just about how I respond to life now that I know I'm epileptic. Other people can easily change their approach to me upon realizing that I'm one of those convulsing, foaming-at-the-mouth epileptics, too. In fact, one major lesson that I've learned, without really choosing to, is that some people don't know how to handle the fact that I'm epileptic. This doesn't necessarily include my inner circle, i.e, friends and family, although relationships with my inner circle have experienced some changes since last June - but mostly in a good way. Rather, I'm talking about potential employers, acquaintances, strangers, and busy-bodies. Allow me to elaborate so you'll know why this is relevant.

There's an art to disclosure. When I started interviewing for jobs after my seizures, I openly admitted to two potential employers that I didn't go to Africa because I had a seizure and was hospitalized. Bad idea. I got a blank stare and a nod, and no follow-up phone call. Of course, I probably wasn't the best fit for the job - in no way am I accusing these men of discriminating against me (that would be AWFUL - wouldn't it? Although I can't say they weren't discriminating...). However, the point is, although epilepsy is apart of who I am - not everyone deserves the honor of knowing that its apart of who I am. At first, though, I wanted everyone I knew to have that honor. That's the kind of person I am. Some people, though, would rather keep this kind of information to themselves and feel that it's no one else's business. I couldn't agree more. It isn't anyone else's business unless we choose to let it be their business.

Now, back to the art of disclosure. I would've yelled it from the roof tops if it were up to me. I might've held a sign up on a street corner about epilepsy awareness, that said something like, "I'm epileptic, but I'm just like you." I mean, seriously - I look pretty normal. I'm your average height and weight for a woman of my age. I don't have two noses, nor do my eyes cross involuntarily (not to diss the cross-eyed croud - really). The art of disclosure becomes a matter of two questions:
Who do I tell? and
How do I tell them?
Is it important for future employers to find out during a first interview that you're epileptic? NO.
Is it important for old acquaintances and friends who run into you at the supermarket to hear about your seizures? NO.
Should you bring it up in conversation whenever possible? NO.
Should you miss a day of work because you're epileptic and decide you might have a seizure if you go? MAYBE but typically, NO. Epilepsy shouldn't be used as a crutch if you don't want to do something.
Is it important to tell your doctor? YES!
Is it important to tell your family? YES!
Is it important to teach your dog about first aid for seizures in case she's the only one home to save you while you have a grand mal? SURE, why not? I did!

The art of disclosure varies from person to person - but determining who to tell is often one of the more difficult things. Like I said, at first, I told everyone. As time goes by, though, I've learned that not everyone needs to know. Unfortunately, images of epilepsy that have been passed down over thousands of years remain etched in people's minds. It's not always the fault of the person who has the prejudice - although most people choose to remain ignorant about things that don't directly affect them. That's why I didn't know that I could've been having seizures all those years - after all, I only thought that seizures involved convulsions and drool. I didn't think seizures affected me directly, but they did.

In today's world, we hope that outdated theories about epilepsy would be eliminated, but that's not true. In fact, many cultures still believe that seizures occur because of the devil. I'm not poking fun - because there are many things that people in all different cultures will blame on the devil. You're familiar with the line, "The devil made me do it?" A majority of the world believes in a spiritual realm, and demon possession - although its become a subject of fascination - is a common diagnosis for a seizure. A friend of mine reminded me of this recently. The Bible describes certain incidents of the demon possessed which share similarities with a seizure: convulsions, eyes rolled back, isolation (epileptics have been declared mentally ill and abandoned by their families since the beginning of time). It's no wonder why people might try and treat a seizure with an exorcism.

And although its easy to laugh at - epilepsy has also been blamed on masturbation. I'm not sure why. If one is epileptic, then they must masturbate too much. Seems a bit illogical, but only because I have access to information with the click of a button. Most people in the world don't - which makes these theories not so illogical. After all, there has to be an explanation for everything - and if the facts aren't readily available, people will create their own explanations for the unexplainable. Everyone does this: old, young, educated, uneducated, religious, apathetic - no one is immune. So, for whatever theories people conjure up for epilepsy or any other health condition, there also needs to be a certain amount of grace given to them if they don't have access to the facts. If they do have access to the facts, though, and choose to ignore them - well, then they're doing themselves and their epileptic neighboor a disservice.

Perhaps its silly for me to tell a believer in the masturbation theory that neurons in the brain misfire and cause seizures as a result of a mysterious act of nature on certain individuals. Perhaps they'd call me crazy if I told them that caffeine triggered seizures rather than masturbation. It all depends on what a person chooses to believe based on the evidence they accept.

This is why its OK to keep the truth from certain people. You never know what they've already chosen to believe about epilepsy.

Maybe I didn't get that job because the boss didn't want me masturbating all the time on the clock. You can laugh at that...really, I mean, its a joke, I promise.

So...moving on. The other question one has to ask besides who? is how? How do you tell someone that you're epileptic? Do you call them up and tell them over the phone? Do you invite them to a private dinner? Do you mention it casually in conversation while in a public place? Do you say it so fast that they can't ask questions and then walk away before they try? I'd advise you to choose a way to tell a person based on your relationship with them. Instead of announcing to them stoically, "I have epilepsy and therefore you should understand that I've suffered," share the story with them. If its an old friend whom I haven't seen in awhile, I may or may not share with them, depending on the time and place. If I want this person to know me well and share in my life in a significant way, however; its important to let them know this fact about me. I try to understand that people may be afraid to ask questions, or they may be the victim of misinformation, and I use my story as a teaching experience for them. It can be fulfilling to give a testimony about epilepsy that changes a person's perspective on the condition.

People who truly care about you will want to know. Those who don't truly care about you won't want to know, although they may be nosey anyway. Believe me, I've seen people who care and people who don't, and there's a difference. Whether they care or not, though, they still need to have their eyes opened, and although its OK to refrain from answering questions, its also good to share truth with an interested person. I almost HAD to tell people about the epilepsy because I was fundraising for a missionary journey and had sent out dozens of letter informing people about the trip. So, people would've wondered why I didn't go to Africa, and I shared with many of them about the diagnosis. If its in passing conversation, I try to tell people as matter-of-factly as I possibly can, and reassure them that I'm fine, now. People may think that I'm not fine just because I have epilepsy - but often its out of love that they do. How you tell people is up to you - and whether or not you do is also up to you and no one else. Never feel pressured.

Anyway, epilepsy will always be apart of me. I'm not ashamed of it.

Vertigo

2009-01-16T09:21:00.000-08:00

I've chosen the name Mvertigo because vertigo is a very real side effect that I deal with frequently from my medication. Its not a daily occurrence; in fact, it normally occurs when I've been inactive (ie: laying in the recliner). When it does happen, I usually have a headache that starts before or after it occurs. It used to be so bad that everytime I'd get up after sitting down, vertigo would occur. So, what is vertigo?

U2 wrote a song about it...but that's not a great description at all of what vertigo is. Vertigo is basically a spinning sensation. Let's say I've been curled up in the recliner for about an hour and a half, watching Cold Case Files (this is pretty typical for me). Let's say my dad walks in the kitchen and I plan to follow him in to talk to him. I sit up in the recliner, and stand up at a normal pace. I take two steps, and the spinning begins. My vision blurs for an instant as the room spins in a clockwise rotation. It feels like the average rush of blood to the head, except I almost fall over each time and usually have to steady myself before I take another step, otherwise I'd walk in a circle. This isn't the only example I have. Vertigo has happened at plenty of different times, places, and situations. When I was at Target with the coffee overdose, I remember squatting down to look at the price of a desk on the bottom shelf of a display. I stood up, and Target started spinning around. Vertigo happens all the time - especially when I haven't slept much or I've had too much sleep. It is particularly annoying, though, when it gets in the way of my normal functions, especially when a headache follows.

It would seem that vertigo increases due to lifestyle - so why am I including this in an epilepsy blog? Well, its relevant because I've only had vertigo a few times in my life before I began taking Keppra. Now, vertigo is something that could happen everyday if I'm not careful. In fact, Keppra warns about vertigo being a side effect; I just didn't know what it was when I first read about the side effects. One day, I wanted to find out exactly what this mysterious side effect was. I read about it and realized that what I'd been experiencing so often was indeed, vertigo. People who experience vertigo often have it when they change positions. That's a general way of putting it, but it certainly applies to me, since I get vertigo when I stand up after squatting or laying down. The situation has to be right, though, for it to occur without fail. Usually an extra dose of caffeine and a lack of sleep will do the trick. That is why I talk about sleep and caffeine as two major things to pay attention to when one is epileptic: because these can increase seizures and interact badly with seizure medication.

Now, vertigo is less likely to occur when I have a set routine. I could work somewhere that I absolutely hated, but if I have a set routine, I feel better all around. When I worked at a funeral home recently, I may have had vertigo a couple of times during the first week of work, but I don't recall it being a problem at all after that. The answer for my woes is routine - in fact, routine is often a great help to people who are suffering from neurological and even psychological disorders. I'm still trying to find my routine, though -

I've been thinking about something today more than I have in the past few months. I'm thinking about Rwanda - which I mentioned in the post about depression. If U2 was writing about vertigo as an emotional/metaphysical experience, then I suppose I can too. I've always been amazed at God's timing - its always really dramatic and sometimes rather obnoxious. A month before I was to board a plane to Rwanda for a year - I found myself in a hospital bed, drugged and loopy. I understood that I'd had a seizure - everyday my family would be there and we'd talk about what happened. People came in to visit me - but I thought everything was fine. Aside from being on the drugs, I thought that I was mostly all right. My parents urged me to reconsider my trip to Rwanda, but I wanted a doctor's opinion first. Well, I got the opinion of two doctors - and they both recommended that I wait for another time to leave the country for a year. In the hospital, I was OK with that.

When I went home, I wasn't. I remember being in my room one night, with my iPod, sobbing as I listened to a song called "Elias" by Dispatch. The song is about a gardener in Africa, and the chorus says, "If you die, will I get word that you're gone - or will I hear it in passing conversation? Will I stop short and fall to the ground? Distance is short when you're hand carries what your eye found.
'Hold my hand just one more time, to see if you're really gonna meet me.'"

There's a mourning phase that I had to endure before I could release myself from this internship in Rwanda, and it happened after daring to listen to this song five times over. I realized that it wasn't my family, my fiance, or money that was to keep me from going - it was my health. That was the most frustrating reason that could've existed. Not having enough money would've been embarassing, but I would've rather had that be the case than my health. If vertigo was an emotional experience, this loss would've been it. I felt like I'd lost everything - that being epileptic meant that I was weaker than others. I felt lost - very much like my world had spun out of control - so much that I would sleep in order to keep from having to deal with being awake and living life. Epilepsy is the most life-changing reality I've ever had to face. Its also one of the loneliest places I've ever found myself in. I had friends - I wasn't alone physically - but spiritually, emotionally, and mentally, I felt comepletely alone. And Rwanda is still on the map - filled with people I'll never meet and a year that I'll never get to have as a memory.

But you know something? I got married instead. =) And he's not afraid of my neurological health. He was by my side the entire time in the hospital and hasn't left my side since. I married my best friend. Although I still get sad over not being in Rwanda - I've chosen a different path which will lead to something even greater. In fact, there is nothing greater than having the love of your life by your side at all times. If you are reading this - feeling alone and worthless - remember that there is love greater than ourselves in this world. My husband is a walking example of it.

I can't write a blog without sentimental embellishments. =)

Modifying habits and overly expensive drugs

2009-01-12T06:56:00.000-08:00

When one is diagnosed with epilepsy - THAT's when they start learning what NOT to do if you're epileptic. Of course, once a person is on medication, they should be able to do all the same things without any problems, right? That would be nice, but, unfortunately, no. Two common rules about epilepsy is that caffeine AND alcohol are two substances that should be avoided. I've decided to only live loosely by these rules, however, because coffee is my favorite drink and I'm a wine lover. This is the post that you'll read and want to slap some sense into me.

Caffeine speeds up the brain - alcohol slows it down. Neither one of these are thought to mix well with seizure medication, and the effects of these substances naturally can effect the behavior of neurons. Let me give you a living example. When I drink more than two cups of coffee within a few hours of one another, I can feel it. I don't get hyper like I used to, in fact, coffee often puts me in a better mood and helps me think more clearly. That is - the first cup does. The second cup - particularly coffees with high sugar content - sometimes makes me feel as though I'll have a seizure any minute. I can't explain this feeling very well - but I know when I've had too much coffee. It happened yesterday, in fact. I was at Target with my husband, and I'd passed my energy threshold, so he told me to take a walk over to Starbuck's and get some coffee. I'd had a small cup of coffee that morning at church, but since it was an insignificant amount, I didn't worry too much over it. I ordered a grande iced White Chocolate Mocha - for which I spent way too much money - and walked back over to our shopping cart. The coffee didn't re-energize me, in fact, I was just as tired mentally - although physically I perked up a bit. However, because I was mentally tired, the caffeine started working quickly and I could sense what was going on in my brain. My thinking was slow, and I had trouble comprehending things, although my brain was over active. Its as though I could FEEL the neurons shooting off quickly in my brain. Since my seizures I've become aware of the effects of caffeine, and this is only one of them. Its believed that caffeine can trigger seizure activity - which, that statement alone could mean that too much caffeine can offset the anti-seizure medication. To my knowledge, that hasn't happened, I've been seizure free for over six months. But, watching my caffeine intake is essential, although I'm a creature of habit.

The second substance, alcohol, is less of an issue for me, although I've noticed some changes since my seizures. I used to be able to drink a glass of wine and feel relaxed, but all right. Now, one glass of wine has me falling asleep standing up. The effects of alcohol are much stronger now that I'm on the medication - although I can sip mixed drinks slowly and be fine. Since alcohol slows the brain down, this is naturally a BAD mix with anti-seizure meds. I make sure to take my meds well after a drink, so that I don't run the risk of having a seizure. Although caffeine is thought to trigger seizures, alcohol is thought to increase them - which is a huge difference. The warning on my medication label says that alcohol should be avoided, and once again, I don't follow this rule to a T. But, I can say that I'm aware of the risk.

So, now that I've talked about how two things I love could cause me to have seizures - let me go on to other things epileptics shouldn't do. First, epileptics shouldn't stay up late every night. Lack of sleep is thought to be another trigger for seizures. I usually get between six and eight hours each night, now that I'm out of school. When I was in school, I drank coffee everyday and slept between five and seven hours a night - so I had seizures every week. I have one side note that is worth sharing: I miss the overly active schedule I had while in school. I was happy with it - I liked having assignments hanging in the balance which I could procrastinate on, and I loved having a set schedule. I loved writing a novel in my spare time, and I loved hanging out with friends on weeknights. Weekends were a bit more depressing for me, but I found my solice through busy-ness. And, I was completely ignorant of my epilepsy. The trade off, though, was seizures once, or more, a week.
When June 21st came and I was sent home and had NOTHING to do but watch meaningless TV and be alone while everyone else made something of their lives, I was totally aware of my epilepsy and was getting to sleep as much as I wanted. I didn't have to work because I couldn't, and I got to see my fiance everyday. But, the trade off was depression. Too much activity with no meds = seizures. Too much inactivity with meds = depression. I don't know which one is worse. Do you? Sometimes I'd rather have the seizures and activity - but, that just tells me how badly I need to redefine my self-worth. We're definitely worth more than our resume - but it doesn't always feel that way. The world trains us to think of ourselves as worker ants more than as individuals.

Anyway, back to lifestyle rules for epileptics - diet and exercise. Epileptics, like every other person in this world, would be better off if they exercised regularly and consumed a healthy diet. These are two rules that I wasn't able to do even before my diagnosis - and with my energy level being what it is, its difficult....OK, I just made an excuse in my own blog that is supposed to be teaching people how to live with epilepsy. That's sad. The truth is, my limited energy supply could probably be helped if I exercised. That's a rule everyone can follow. But, I'm not so disciplined in this area of my life - as my three months at home in front of the TV demonstrates. Yet, diet and exercise are two key rules for epileptics and ought to be followed. I'll start that next week. =) If one's overall health is improved using diet and exercise, their neurological health will be improved too, or so its believed.

The last thing that epileptics should never do that I'll mention today is probably the most important: DO NOT skip a dose of medication. Let me tell you what happened to me. The first time I forgot to take my medication, I went to bed and couldn't fall asleep because everytime I closed my eyes, I saw visions and heard voices. In fact, I can't even explain the things I saw because they were just too freaky. When I started hearing someone screaming inside my head, I got out of bed and told my mom that I was freaking out mentally. I had no control whatsoever of the thoughts in my head. I didn't have a seizure, fortunately, but the other stuff was enough to make me decide NEVER to skip a dose ever again. Just skipping a dose is not the only precaution, though - because its important to take the meds at about the same time each morning and night. Having a schedule is important, because even a few hours of variation is risky.

And I know I mentioned overly expensive drugs in the title - so here's the skinny on that. My med, Keppra, costs over $275 for a month's supply without insurance. The other med that I tried and was allergic to, Lamictal, was over $300 if I'm not mistaken. So - its expensive to be epileptic. This doesn't even touch the amount of money we are still paying for my four day hospital stay. We saw three different doctors - one of them saw me for twenty minutes and never came back; another one saw me twice and wasn't a neurologist; and the last one IS my neurologist who saw me for about forty five minutes. They all charged about $100 for their time, even the one who disappeared after the first visit. Not to mention that I was in the ICU because there were no open beds in the regular hospital rooms - so we ended up having to pay more for my stay even though the ICU was our only option. And this was WITH insurance. You'll be all right in the USA if you don't get sick - otherwise, the hospitals and pharmaceutical companies will take all your money and insurance agencies won't want anything to do with you.

Of course, the care I received was excellent - so I can deal.

Sinking.

2009-01-09T09:13:00.001-08:00

Altogether, my physical recovery after the seizures of June 21 took a few months. I can't say exactly how long it was because I don't recall when things came back to "normal" (things are still not quite "normal" like they used to be, but that's to be expected, or normal, if you will =). I was extremely fatigued much of the time, especially the first few weeks of being home. I was in the hospital for a total of four days - and was in and out of sleep for most of those four days. I was wheeled out on a Wednesday evening, and I was very seldom left unsupervised by my parents and fiance. I had a difficult time going out with friends because I was less social than normal and wasn't back to my normal energy level. In fact, I'm still not back to my pre-seizure energy level.

This is a normal thing for people who suffer from seizures. Most of the time I just wanted to sleep. It takes awhile to adjust to the medication and get back to day to day life. I watched "Project Runway" everyday, and even sank to the level of "America's Next Top Model" reruns. What can I say? I was desperate for something to focus my mind on. I also tried to read more - hoping that the down time might produce a more scholarly woman than I started out as. I might've tried writing sonnets of angst if I thought it would get me anywhere. I thought I'd become one of those mysterious, complex, people who read Chomsky and quote Nostradamus. Basically, I believed that the months of inactivity would give me an opportunity to change the person I'd become which I loathed so much. That's when I started really counting all the things I didn't like about myself. I made it into a daily exercise - going back in time and trying to re-live past situations in what I thought was a better way - only to realize that I couldn't change the past, or those aspects of myself that make me vulnerable and weak to other people.

The depression started suddenly. I'd been home for less than a month when I started sinking into a miserable puddle on the floor of my room every weekend. I basically believed that no one loved me - that it wasn't the epilepsy that made me unloveable - but myself. I began to pick fights with people I love - because after all, I was stupid and couldn't take care of myself so, why worry about being rational? At that time, I wrote off all that I'd worked for, believing that my whole life was worthless now that I was turning into a monster. Who really wanted to deal with me anyway? Why would anyone love someone so pathetic? Well, that's easy, I reasoned - no one really loved me to begin with - they felt that they HAD to be there for me but didn't really want to. That's why I lost my temper so often - because I thought people were pretending to love this monster of a person when they should've just tossed me out on the street. I felt that I didn't deserve to be loved.

Of course, this didn't stem solely from the epilepsy - I was already prone to this way of thinking. I'm an extremely sensitive person, even when I'm at my strongest - but during this adjustment phase, I completely gave up on trying to hide my feelings on things. I was argumentative and acted on impulses - making it difficult for people to know how to help me. I didn't want help - but I needed help, and I hated it. I'd gone to school away from home for two years and had a lot to show for it - and when I ended up stuck back at home with my parents without driving priveleges, I might was well have been a vegetable for how upset it made me. I pulled away from people who aggravated my feelings of helplessness - namely my friends who had successful careers and happy lives. I was supposed to be in Africa for a year - after all, I'd been chosen for it - and that was greater than any dream I'd ever had to start my career upon. When I realized that I wasn't in any condition to travel across the world for a year - my perception was that the internship was taken from me. I was angry at God for giving me a dream that couldn't be fulfilled - and I had sought so much of my self worth through my accomplishments that I deemed myself completely useless.

Therefore, every Saturday, I'd roll up into a ball on my floor and sob for no reason. During the week I'd feel the depression - but during the week felt more like a mini-vacation and I found it easier to live with. But when the weekend came - and I realized I hadn't made anything of the preceeding week, I'd lose all my bearings. My fiance asked me on one of these occasions if I ever thought about suicide, and I'd be lying if I said I didn't. I never would've been able to carry it out, of course - but the fleeting thoughts were there. If anyone reading this knows me personally, I'm not exaggerating any of it. This just goes to show how bad the depression was at times. Like I mentioned in a past blog, I saw a psychiatrist and a psychologist - and to be honest, seeing the psychologist helped me realize some things about myself that I didn't see previously, but it really wasn't what I needed.

Other people ARE my greatest sources of stress. There's nothing that gets under my skin more than the thoughtless actions of other people. Whether they are a close friend or an acquaintance - I'm easily hurt and offended by things that most people wouldn't think twice about. Before my seizures, I had a tendency to be this way, anyway, but following my seizures, I was even more fragile than I was before. Part of this was my drop in self confidence, no doubt - but the other part is the depression. Of course, it hurt 100 times more when people I loved did inconsiderate things, but even people I didn't care about as deeply could have me wrattled with one expressionless face. I'm still like this - and I don't know why, but I'm trying to work through it. I think its because I'm normally a happy, kind person, and when people don't respond well to me I take it personally, everytime. I believe its an anxiety issue - I'm overly anxious about my relationships with other people. So, when the depression caused me to pull away from people and snap at others - I didn't know how to make up for my inability to control my emotions. Yet, another thing I began hating about myself.

The depression goes along with the epilepsy - although epilepsy isn't the cause of it, necessarily. Circumstances surrounding epilepsy can lead to depression and a drop in confidence is a common aspect of being epileptic. Of course, I'm a mild case - my seizures can be controlled with medication. What about epileptics whose seizures can't be controlled by medication? How devastating that must be. I can only imagine that the physical and psychological side effects must be amplified to a greater extent. But, this blog is to help people understand that depression is common for those with irreversable conditions, although situations vary from person to person. I'm doing all right, but the depression comes and goes, with a much greater aggression than it ever did when I was younger.

So, don't tell a depressed person, "Don't worry, be happy!"
It doesn't work.

2009-01-06T12:38:00.000-08:00

Go ahead and take a glance at this web page which talks about the different types of seizures.

http://www.epilepsyfoundation.org/answerplace/Medical/seizures/types/

I'll save the suspense and tell you that the types of seizures I'm vulnerable to are called simple and complex partial seizures. What's the difference between simple and complex? Well, its easy - when I'd have a simple partial seizure, I'd be conscious. When I had the complex partial seizure, I was unconscious. On June 21, I had about five simple partial seizures, one complex partial seizure, and one grand mal seizure. Like the complex partial seizure, a person is unconscious when they have a grand mal seizure.

Not to divulge other people's juicy secrets, but I've heard testimony from the mouths of other epileptics, and what they've said is fascinating. I've met someone who suffers from myoclonic seizures, or, seizures that cause the muscles to involuntarily contract. This occurs frequently with juvenile epilepsy, which, for many who have the condition, often ceases with adulthood. As it turns out, this particular person had myoclonic seizures when she was tired - either while in bed or early in the morning. I understand how that is, since my seizures occurred at night or in a light sleep. I've also spoken with a person who experiences hourly absence seizures - which often shows itself as a lapse in thought or awareness for any length of time. Both of the seizure types I've mentioned are considered generalized seizures. But, no discussion of generalized seizures would be complete without the honorary mention of the tonic clonic, or grand mal seizure. This is what most people think of when they think of seizures. Convulsions, drooling, eyes rolled back, grunting, biting down on the tongue - all characteristics of a tonic clonic seizure. However, its important to remember that the dramatic difference between this seizure and others is that the misfiring neurons have managed to declare anarchy in the brain and the entire brain starts firing commands to different parts of the body. Its the most extreme version of a seizure, but it all stems from the initial misfiring of neurons, which makes all seizures the same, although symptoms vary. Partial seizures occur in one side of the brain - and are not necessarily the same as generalized seizures, although they may become a generalized seizure. For that to happen, as it did to me on June 21, the seizure begins in one side of the brain and eventually spreads to other parts of the brain, causing other seizure symptoms before reaching every part of the brain in a grand mal seizure.

So, there you go. Not all seizures follow the same patterns. They are as unique as the individuals who have them. Seizure symptoms are just as varied, and include smacking, chewing, and staring. People can be fully aware or completely unaware - and sometimes they get to a point where they can no longer comprehend what's being said to them. People have reported hearing babble when someone spoke to them, even if it was in their native tongue. People have also reported hearing music, smelling odors, and seeing visions - it all depends on what part of the brain is affected the most aggressively by the misfiring neurons. Like I said before, on the night of June 21, the partial seizure began in my left frontal lobe, which caused me to lose my ability to speak and control my arm movement.

This is likely the most technical I'll get at this time, regarding the seizures. My main point is to educate you briefly on the types of seizures as well as refer you to a website that can give you more detailed information than what I've given. Before I end this entry, I wish to share a story with you. I met someone awhile back who suffers from frequent tonic clonic seizures. As you could deduce, tonic clonic seizures can be extremely debilitating, especially when they are repetitive. Medication is not a solution for some people, and unfortunately for this person, medication has little effect on the seizure activity in his brain. One day, he shared the lack of support from his parents, particularly, his mother. He is forced to live with and deal with his seizures alone, because his mother is too afraid of "catching epilepsy" to care for him the way he needs her to. I pray that this woman's heart has changed, but, this story is not only unique to him. People are born with a tendency towards epilepsy - it cannot be caught like the common cold. In case anyone reading this had any doubt or curiosity about how one develops epilepsy, know that its not because they were exposed to it when they visited a friend in the hospital. Its a condition that develops due to one's neurological makeup.

And one more point of value: people can have seizures and NOT be epileptic. Seizures may occur as a result of an illness, such as an infection. It could also be a result of a head injury. It can even occur as a result of other psychological/neurological/physical conditions. For instance, I have a friend who has a type of disorder in which her heart stops - and her body produces a seizure in order to restart it. In her case, the seizure saves her life. Imagine that.

Ongoing challenges

2009-01-03T08:43:00.000-08:00

I've read some horrifying testimonies that epileptics have shared and doctors have witnessed. I'm so thankful that my experience with epilepsy hasn't mirrored some of those more closely. For instance, its common for people to "personally wet themselves" during a grand mal seizure - and I'm relieved that I didn't do that. I'm also relieved that I never had a seizure while driving, nor did I collapse and convulse while walking through the quad of my college campus. I didn't see visions of Tweety Bird everytime I closed my eyes (in a book I read recently, someone saw Tweety Bird whenever they had a seizure) - and, aside from the episodes that occurred while I tried to sleep, I had no lapse in thought or consciousness that other people could observe.

In fact, I can describe my most frightening seizure as though it were yesterday - and I'll do my best to help you understand what I believe was going on in my brain. As I wrote in a prior blog, the grand mal seizure began in the left frontal lobe before it spread to the rest of my brain. If you don't recall, the left frontal lobe controls speech and arm movement. When the seizure began, the aura that came first felt like a headache was coming on. I felt claustrophobic and pulled myself away from my fiance, and he knew right away that I was about to have another episode. At first, he kept talking to me, trying to keep my eyes focused on him, but the seizure was too much for me to focus on anything. It was as though my brain was on overload - and although there were no racing thoughts or images - there was a sensation that I was being smothered. I kept repeating "OK, OK, OK, OK..." I was in such a state of fear, but I tried to compose myself, so I got off the couch and started pacing the room. My mom, dad, and fiance all watched me closely as I tried to talk myself out of the seizure. I was hyperventilating, and after a few moments I became fatigued and laid on the floor. With my dad on one side and my fiance on the other, I breathed heavily. My head felt like it was about to explode. Before I lost my ability to speak, the last thing I said was, "We need to go! We need to go!" My dad asked, "Where?" But I couldn't answer him.

Without any prompting, I got up and started to pace the room again. This was by far the strangest moment of the evening. Up until that point, I'd never had anything that came close to an out of body experience. However, I felt as though I was outside my body, watching myself - because I had absolutely NO control of what my body was doing. There was a red blanket on the floor - and for no reason, I squatted down and started knotting up the blanket. My dad told me later that it looked as though I was planting a garden. After playing with the blanket and rolling up the corner of it, I hobbled over to my fiance and began to touch his lips with the blanket. I did the same to my parents. I could hear my mom utter, "OK...?" I stood up again, and I don't remember exactly what my arms were doing, but they were sort of flailing about in any which direction. I realized that my arms were moving without me controlling them, because I was fully aware of what was going on at that point. My dad and fiance got right up next to me, and as my dad held my shoulders, he asked, "Who am I?" In my head, I said, "You're my dad," but on my face, I only wore a smile. My verbal response could only be communicated as a smile. He asked a couple more questions, and again, I only smiled each time. The only explanation I can give is that I didn't want my family to worry about me, so I wore a smile even though I couldn't speak. It was immediately after this that my fiance ran upstairs to get my brother and my insurance card. I couldn't really put my flip flops on by myself, so my fiance put them on for me, and he and my brother held me up as we went out to the car.

The car ride was mostly a blur. I was aware of what was happening most of the time. I knew where we were, but I couldn't understand what anyone else was saying. I blacked out sometime before we reached the hospital, but even though I was unconscious, my body kept doing things on its own that didn't make sense. For instance, I tried to kiss my dad on the lips, and I continued making arm gestures in the waiting room. I was obviously seeing something - because I was pointing at something and following it with my finger right before the convulsions began.

All I can say is, thank God I didn't wet myself.

I was out for about four hours - and when I did wake up, I was coherent enough to beep the nurse to have the cathater taken out. Yet, I was still incoherent enough to not care WHY I was in the hospital or where my family was. The EEG taken the next morning was able to pick up seizure activity, which means that I was having seizures all night and much of the next day, although the medication they put me on controlled the symptoms.

I said that I'd try and explain what I think was happening in my brain, and I meant particularly in regards to the blanket incident. I was knotting up a blanket on the floor, playing with it, right before I touched other people's lips with it. This reminds me of a childhood memory I have of what we affectionately refer to as my smell pillow. My smell pillow was a routinely slobbered on object that I had to have at all times - and my habit was to rub the pillow against my upper lip before going to sleep. I'd venture to say that this "oral fixation" I had that night about other people's lips and the blanket on the floor may have been an automated response from my brain, based on what I used to do as a child when I needed to be comforted or lulled to sleep. This is only a theory, of course, but it makes some sense.

Seizures are difficult to understand and explain, although the biology of it is fairly simple. It all has to do with neurons misfiring, and the misfiring communicates to other parts of the brain, creating chaos as a result. The response of the body cannot be generalized, because even convulsive seizures vary. I'll go more into the technical terms for the different types of seizures later. For now, though, I'll leave you to process the information I've already shared with you about grand mal seizures from a personal point of view.

Redefining "normal"

2009-01-02T16:26:00.000-08:00

As I've attempted to explain - epilepsy is a condition which imposes itself on people's lives - but the way it impacts people is not unlike other health problems. For instance, facing my new reality - coupled with the increase in my medication - helped to send me into an emotional spiral. When I went to see the psychiatrist for the first and only time, we listed all the factors in my life that could cause depression, and without the medication as a factor, there were plenty of circumstances that would make me vulnerable to depression. The diagnosis alone was a major set back to me - and many people who are diagnosed with epilepsy need counseling as a result. Consider this: a person basically has to redefine "normal." I had to accept that the routine "panic attacks" that I'd been having for years were actually abnormal - in other words, what I thought was something manageable and simple now became this persistent, complex problem. Facing the fact that I had been having seizures since I was 16 and didn't realize it was a major milestone in my life.

The Epilepsy Foundation is an amazing organization that reaches out to epileptics from all different backgrounds. They hold support group meetings once a month. I remember the first meeting I ever tried going to - I had to really psych myself up for it. I was nervous, anxious, and emotional up until the moment we pulled into the parking lot - only to see that the meeting had been canceled due to construction. I couldn't have been more disappointed, and that disappointment came out as a rolling of my eyes and a shrug, as if I were saying, "Of course its canceled - the world hates me, after all." I handled many of my problems this way while I was in the middle of the depression - I felt that I'd lost everything already, so why not take more from me while I'm still down? This was how the depression affected me. I picked fights with my family and fiance, and I'd cry for hours every Saturday. I'm still puzzled as to why I'd sink to my lowest points on Saturday - all I know is that my fiance was the only one I'd allow near me while I'd cry. We even had a system. I'd be on the floor, sobbing, and he'd be sitting near me, patting my back, waiting for the tears to stop. When they finally did, I'd have no explanation for my brokenness.

Each day for the first three months was the same: I'd wake up around 10:30, take my medication, curl up on the recliner, and flip through the channels. About 75% of my time was spent in front of the television - and I've never been such a couch potato in my life. I'd say at least two months were like this - and when I wasn't watching television, I'd be on the computer. The slink into this lifestyle wasn't immediate, though. For my first few weeks home, I was emotional, but doing all right. I even went to church with my family and went to my friend's weddings - trying to maintain as much normalcy as possible. Yet, I can't talk about this time without bringing up something that is a little uncomfortable.

My family has been attending the same church since I was 12, and my mom holds a position on staff. Basically, everyone knows me; and everyone knew about my seizures. There were some people who treated me like they would any other day - but then there were some who acted awkwardly or didn't know what to do or say when I was in front of them. My attitude eventually became, "If you don't want to know, don't ask," but of course, I'd never say that outloud. I almost found it entertaining to watch people stumble over their words - I mean, if I'd been in their shoes, I wouldn't have known what to say, either. After a couple of visits to church, though, with people looking at me in that concerned way - never mind that I'd just graduated college and written my first novel - I decided never to go back. I don't blame anyone for not knowing what to say - but I didn't like being looked at as "the girl who had the seizures," because there's more to me than being epileptic, after all. I'll admit it: my pride took a hit.

Of course, I didn't know right away that I was epileptic. Although epilepsy is defined as "one or more unprovoked seizures," the doctors found that I had an infection the day of the seizures, so their first thought was that the infection lowered my seizure threshold and provoked the seizures. However, after I'd been home a few days, I dared to get on the computer and research the E word myself. I'd read a couple of articles on epilepsy, and I remember how the tears rolled down my face as I realized that I was indeed, epileptic. I didn't need a doctor's diagnosis, but we eventually got three doctors to confirm adamantly that I have epilepsy. I was filled with anxiety over all the theories made about epilepsy, particularly, women and epilepsy. There's no way to determine what in my genetic makeup has affected my neurological health - and there's no way to decide what triggers my seizures, although I believe my trigger is stress. I put two and two together: my seizures increased while in my final year in college - the busiest and most exciting year of my life - which would explain the increase in seizure activity.

I've brought up many different points in this blog - but remember, its all from the mind of a girl whose lived it. If there's anyway to sum all of it up: newly diagnosed epileptics need time, understanding, encouragement, and lots of tissues. Be sensitive to people who are facing difficult health issues, because most of the time things will be said or done that would not normally be said or done by them. Its hard to redefine normal.

Feelings about epilepsy

2009-01-01T14:15:00.000-08:00

I mentioned in my last post that epileptics will do best if they embrace their condition. I mean this in the most figurative way. For instance, there will probably never be an "epileptic pride" parade, because epilepsy more or less imposes itself on our lifestyles rather than influences our lifestyles. However, for me, the journey to embracing the condition was a difficult one.

After my diagnosis, I felt that I'd lost practically everything I'd worked for in college. A month before I was to leave for Rwanda for a year, I awoke on June 21st to a day wrought with seizures - and unlike every other time I'd had a seizure, there were witnesses to each episode. The seizures progressively worsened as the day went on, but never did I think that what I was experiencing was brought on by epilepsy. I felt that it was the stress of fundraising that was causing the episodes. But that night, when my family rushed me to the hospital after watching me lose control of my senses - it became apparent that I wouldn't be leaving the country. Yet, even after the doctors confirmed that I'd been having seizures and would need medication to control them - I still insisted that I'd be boarding a plane to Rwanda a month later.

I remained in this state of denial for a few days - and it wasn't until a month and a half after being home that I gave up my internship officially. I had to go through a mourning phase that lasted a few weeks. I wanted to be alone much of the time - and I was fighting the urge to blame all my problems on epilepsy. The fact is - and I mean this completely - that God was always in control of the situation. He put a love in my heart for the country of Rwanda, but He also allowed me to have this condition that would prevent me from returning there a second time to live out my dream. It was an extremely painful process. Aside from the emotional changes - there were many physical changes to deal with as well.

I was immediately put on a strong anti-convulsant medication in the hospital - but it only treated the symptoms. Well into the next day, I was still experiencing seizure activity. I think my neurologist was thrilled when he saw my EEG, because he was able to see right away where in my brain the seizure had started: my left frontal lobe. Each portion of the brain has a different job - the left frontal lobe happens to control speech and arm movement. The night of my grand mal seizure, I had lost control of my speech and arm movement. For instance, I lost my ability to speak at all. I also witnessed my own arms flailing about - and I had no way of stopping it. I was in and out of awareness - and was in a dream state for some of the time and in a state of panic the rest of the time. Yet, I was able to think coherently. I remember thinking to myself while on the way to the hospital: "Why aren't we going to Methodist hospital? It's closer," and I also remember knowing the answer the questions my dad was asking me, although I couldn't utter a verbal response.

My neurologist wanted to try me out on Keppra, a more up to date anti-convulsant. He wanted to start me out on a medium dosage to see how that worked for me. After about a month on the dosage level, I was unsteady while walking and still experiencing auras (the feeling I get before the seizure - it feels as though time has stopped - that's the only way I can describe it). We increased the dosage to the next level, and I noticed a change right away. I felt more energetic, and the dizziness I'd felt on the first dosage started to stop altogether. However, that's also when the depression started. I'll go more into that later. I called my dad while he was at work one day, because the depression was almost unbearable. I found myself daydreaming more than normal - probably because I was so unhappy with my life that I "created my own reality," if you will. I was also overly sensitive and frequently lost control of my emotions. We decided to try a different medication, Lamictal. It had taken me about two months to adjust to Keppra, and now I had to re-adjust to a new medication altogether. The dizziness was worse on this medication, and after about a week of using it, I broke out in a rash all over my legs and chest. The rash is a sign of an allergic reaction to the drug, and the percentage of people who experience this reaction is small. What can I say? Lucky me.

I went back onto Keppra, and the rash eventually went away. My neurologist recommended that I see a psychiatrist to deal with the depression. It was an emotional session for me, and the objective, Polish doctor looked at me and wondered whether or not I really needed to be talking to him, or a psychologist. After that, I saw a psychologist a few times and talked about everything but the epilepsy, it seemed - but it turned out that the epilepsy wasn't the source of the depression - it was the loneliness and pain of inactivity. I'd gone from being a busy, successful college graduate with the world at her feet, to a girl confined to her home, adjusting to a new medication while all her friends were at work. I'd lost my driving priveleges, and was unfit to work for about three months.

Early on, I received advice from another epileptic woman I'd met over email. She told me that its OK to laugh. To me, this meant that being serious all the time about the condition was not going to help me - but, I needed to free myself to tell seizure jokes and poke some fun at myself. Its actually quite easy to do - telling a seizure joke, that is. For example, one day while I was out with some friends, I made a sarcastic comment to my friend's boyfriend, and before he could comment back, I quickly blurted out, "Sorry, I was having a seizure when I said that." From that point on, I started to feel comfortable with talking about the condition, and I loved talking about it, in fact. I read everything I could find about epilepsy on the internet, and I practically consumed a book I received about epilepsy from the local Epilepsy Foundation.

Before I ever knew I was epileptic, I was aware of the stereotypes. In fact, I didn't question them much myself. Generally, when people think of epilepsy, they don't think of someone staring off into space for a few seconds; they think of a person on the ground, foaming at the mouth and rolling around. I'd like to challenge every person reading this to imagine what they think of when they think of epilepsy. And be honest.

I'll be on again to write more about living with epilepsy. I truly do hope that this is educating someone out there. Feel free to comment or share your experiences.

From the beginning...

2008-12-30T09:42:00.000-08:00

My purpose for blogging was lost in the drama of life - I write to please - but I also write to educate, and that's my conviction for the purpose of this blog. If you want to understand more about epilepsy - from the perspective of one living with it - you've come to the right place. I'm still learning about epilepsy - I don't fully understand it either. There's plenty of unanswered questions and even doctors will admit that they don't know everything there is to know about it.

When you do online research, you'll see lots of assumptions and theories. Keep in mind that each person has a unique brain - and since the brain is where the problem is - epilepsy affects individuals in a multitude of ways. There are suggestions that caffeine, stress, hormones, computer screens, and flashing lights can cause seizures - but remember, its not the caffeine or the lights that cause them - rather, the caffeine and the lights create the conditions in which the already vulnerable brain will have seizures. Also, remember that epilepsy is not a disease, but a condition. It can't be caught, like a virus - and it can't be proven that its genetic, either.

How rude I am to not even introduce myself! =) I'm a newlywed and recent college graduate. I'm 24 years old, and I started having seizures when I was a teenager. Some people who start having seizures young grow out of it - I didn't. My situation is much like that of others: I had seizures for years, not realizing that they were actually seizures. I mistook my seizures for panic attacks - and I never did the research or told anyone. In fact, I wasn't concerned about it at all until I was in my last year of college. At some point, I began to have these seizures at least once a week. They had become such a normal part of my life that I didn't tell my roommate - after all, I didn't believe there was anything wrong. However, I do recall the attacks becoming more severe and frequent - so much so that at times, I'd literally pray myself out of them. With one of my average seizures, I'd often be in a light sleep - I will have barely drifted off into dream land when I'd start to go into the episode. The seizure starts with a racing thought - usually the same image over and over - as if an old CD were playing in my head and skipping at the same spot. Then, I'd feel dizzy and start hyperventilating slightly, as rushes of hot and cold go over my body almost simultaneously. My heart would be racing, and all the while, a feeling of intense panic would make my head feel as though it was about to combust.

Of course, my head never combusted (thankfully), but, the feeling of it was frightening enough. I started researching panic disorders and tried to make a link there. In fact, what I experienced was very much like a panic attack - although some glaring differences did exist. Like a panic attack, I experienced feelings of hot and cold, and I focused my mind on irrational feelings and thoughts. For instance, one night I had drifted off into a dream about bunnies, and when the seizure began, the same bunny flickered on and off in my head until I was literally afraid of the little brown, fluffy terror. I'd call that irrational. Yet, panic attacks often last longer and are focused on a stressful situation - not bunnies.

So, what causes the irrational visions? The answer would be neurons. Neurons sometimes misfire in the brain which can cause seizures. Neurons are the little messengers of the brain that make thinking (and moving) possible - but when they are triggered by something like stress or caffeine, in an epileptic brain, they will start firing too fast or out of order. This is only one part of the story, though. When someone goes into a convulsive seizure (grand mal seizure), its because every neuron in the brain gets out of whack. When one begins misfiring, its like a chain reaction throughout the brain. This is why people will often start acting strangely right before a convulsive seizure - because when the neurons misfire, they affect movement, speech, behavior, and thought. When the misfiring spreads throughout the brain, many different things can happen, but most commonly, a person will convulse as a result. I didn't have my first convulsive seizure until I came home from college at age 24. It was in June - a little over six months ago, that I had six seizures in one day. The first five were mini seizures, although just as serious - but the final seizure of the day was the grand mal. The seizure itself lasted about thirty minutes, but the convulsions only lasted about thirty seconds. You see, convulsions are a symptom of the seizure - not necessarily the seizure itself.

This is only the first of many blogs I intend to write about this. I hope that my experience will be of help to someone out there. If you or a loved one have been diagnosed with epilepsy - know that you're not alone. The key is to embrace the condition. I know that sounds strange. Our brains are so complex - and its because of our individual make up that some of us are prone to seizures and others are not. Nothing is an accident - and nothing makes us "broken."