“No head injury is too serious to despair of, nor too trivial to ignore.”
I remember my last seconds of my life before epilepsy. My great-grandmother had passed away, and my parents and I were making the three hour drive to help organize her belongings. We stopped for food. I laid down in the back of the car. My parents got out of the car. Got back in. Mom first *click* door closes. Dad *click* door closes.
The next thing I remember were the first few moments of my life with epilepsy. My mother had moved to the back seat, Dad was driving, speeding and swerving. Mom had panic all over her face, and she was crying. I asked her what was wrong, where were we going. She told me we were going to the hospital. I was shocked. Why? She said I needed to go. Why me? I was fine. My heart started to pound in my chest. This was a nightmare, this wasn’t happening. When they sliding doors parted at the ER, nurses had a stretcher for me. A stretcher! There was a mistake, not me, what was going on? Why were my parents in on it? As they moved me to a bed, my dad grabbed my knee and said everything was okay. They explained that I passed out and had a seizure. No I didn’t. Yes, I did. No, I didn’t. The doctor asked my dad about family history. He said my older half-sister, his daughter, had epilepsy. What?!? No, she didn’t! Then all focus came back to me. I was shaking I was so confused and scared. My whole body vibrated. I started to understand that something was wrong with me when I realized that I didn’t know where I was. Why were we in the car? Why were we in a different town? We were traveling? When did all of this happen? I kept asking questions as if I had entered a parallel universe. Mom became noticeably worried. I knew she was wondering if I had forgotten Nana had died. I remembered that. The doctor explained that short-term memory loss was normal, and it would come back. Dad said everything would be okay, I would be fine. Well, I had had enough. I hate hospitals, being the one in the bed was a new and unwelcome experience for me, so I would be leaving. The doctor said I needed tests, but that I should be fine to go. I swung my legs around and hopped off the bed. My legs were wet spaghetti. Dad had to hold my elbows. In that moment, I felt the split. My body wasn’t mine anymore. It had gone rogue, without my consent. The shock wore off and I felt it. Every muscle in my body hurt, my head hurt. I had bitten my tongue pretty bad, and it was sore and stinging in my mouth. Dried blood stained the corners of my mouth.
I was 14.
The tests that ensued made me feel like I was on the path to death, and they were just confirming it. I’ve been through numerous rounds of tests since then, but the first round I remember as being the most scary, the most annoying. Dad and his sense of humor and his fatherly obligation to make me feel safe, lifted my spirits. Then my first neurologist called us in. I had three oral medications to choose from. All had side effects, but not bad, he said. Two were the same, except one was extended release. The other could cause severe liver damage, fetal deformities, but at 14, I was most threatened by excess facial hair growth. Extended release it was. Dad smiled and said, “See, all you have to do is swallow a pill a day, and you will be fine! No seizures!” As we left, my next appointment was put on a business card with a brain on it. I was normal teenager, and then looking at that brain, I felt like I had a brain problem.
Our family doctor said it was best that I and my parents not tell anyone about my epilepsy, because of the stigma of the disease. Epilepsy’s reputation, not it’s physical effects, would have more of a negative impact on my life, was the message we got. So we didn’t.
I was 20 years old when I realized what absolute nonsense that advice was. Eating one of my last lunches in Edinburgh before returning triumphantly seizure-free to my parents in the States, I had a seizure in a restaurant. I knocked out my two front teeth. That, and the giant blue bulge on my forehead were my souvenirs from face-to-tile impact. Yeah, I was really upset about my teeth, and the embarrassment of seizing in a public place, but the look on my friend’s face haunts me still. She was in shock, and scared. She never asked to be put in this situation. I should have prepared her for the “just in case.” I didn’t trust to tell her, I thought she wouldn’t feel safe around me, she wouldn’t want to me friend.
In all fairness to my young mind, I still deal with the stigma of the disease, as does everyone with epilepsy. I am fortunate. If I had been born in the 17th century, I could have been burned at the stake for being a witch or possibly exorcised. As I was watching an episode of Mad Men, I admit to judging a character who seemed to be a swindler, possibly a drunk or drug addict, taking advantage of his poor sister. What a loser, I thought. He had epilepsy. Unable to get work, he was forced to take small change from strangers and live on the road. No one to call a friend. Fifty years ago, I might have had a different world to face as well. Now, when I tell strangers face-to-face I have epilepsy, their arms cross. I usually get either a couple of steps backward or at least a lean backward. Some people try to compliment me and say that I don’t look like I have epilepsy. A couple of people began talking to me as if I had a developmental disability. All of them seemed paranoid, that I would drop to the floor that minute and they’d have to deal with it. To be completely honest, writing this blog post is making me uneasy.
All my seizures have been tonic clonic (also known as grand mal) with no warning signs whatsover. For me this means I wake up in a place I don’t recognize, no recollection how I got there or what I was doing, and with a bitten tongue, sore muscles and a migraine straight from hell itself. In thirteen years, I can’t tell you how many seizures I have had, not because they are so many, but because I was never in the mental state to take notes after having them. First comes denial where I battle whoever is with me as they try to tell me I had a seizure. Not only do I not remember, but admitting I had one means that I failed somehow. Which brings me to the second step: guilt. Having a seizure turns me detective – why did it happen? My medication wasn’t taken, I didn’t get enough sleep, I did something wrong. After guilt comes further investigation into what I did wrong. Very rarely is a reason found, which depresses me. I have absolutely no control. Complete helplessness. I can take care of myself, and still have a seizure. Anytime, any place, without warning. Then I’m angry, depressed.
After one particular seizure, I came out of it with my boyfriend wiping a wet washrag over my arms. I asked him what he was doing. It burned. He said I had a seizure, I thought no, because that’s not right. He took me to show me the kitchen as proof. When I got up, my knees almost collapsed under me. Dammit, he was right. I hurt, too. I found my kitchen floor covered in glass. The door to the stove was busted open. Apparently, I had a seizure standing up, fell backward and my head hit the stove. He heard the noise and ran downstairs to find me seizing in a pile of broken glass and blood. Well, we needed a new stove. I didn’t tell him or my parents that every step of getting that new stove made me physically ill. I was not ashamed of my illness, of that seizure, but sickened that he had to see me like that, lift me from the glass and toggle the line of waiting for the seizure to stop or calling 911.
The first seizure he had witnessed was a close call. He found me slumped over in the garage, behind the wheel of the car. Car was turned on. He told my years later that he cried he was so worried. I remember coming to, arguing with him about me having a seizure. Then, as my short-term memory came back, I remembered I was on my way to church, and the very last thing I saw was my hand going for reverse. So many close calls, that even after time has passed, the fear of what could have happened or could happen could stay with me, but I don’t want to live in a constant state of paranoia.
Dad taught me to think positively, to have a sense of humor. I do have a sense of humor about my epilepsy. One time, a piece of tongue fell off as it was healing right as I was talking to my boss. I spit it into a Kleenex and said, “Whoops, tongue.” It gave her chills and made me laugh. Also, the fresh scars on the edges of my tongue were great when you are waiting forever at a restaurant. I could have just told the waiter how hungry I was and stuck out my tongue. Mom didn’t think that would be funny. Having a sense of humor about it not only put others at ease around me, but it put me at ease and reminded me that one thing I can control is my attitude.
I have been seizure-free for over three years, thanks to a new drug. I give thanks to God and the fact that now over 20 anti-convulsive medications are available to those with epilepsy. Thank you medical science. The pills I was taking for over 10 years were eroding my bones and hurting my liver, plus all the medications I was taking to combat the side effects of the drug also put a cramp in it’s effectiveness. The pills that have controlled my seizures now are a “cleaner” drug as my epileptologist would say. I feel good, I feel confident. It has freed me.
Because I have a type of epilepsy I cannot grow out of, this chronic illness will preempt every decision I make. If I have to take a new medication to improve other areas of my health, epilepsy comes first. Going out, lights, entertainment, sleep loss, stress, work, relationships, illness – all can trigger a seizure. An epileptic seizure is an electrical storm in the brain. The way I think of it is that epilepsy can cause lightening, but all other times it looms over me like a cloud, following me wherever I go. I have to make sure I am prepared for any lightening that could strike. Constantly trying to avoid getting hit. But just like those unfortunate enough to be struck by lightening, you don’t know if you’re going to be hit. You just have to just keep watching the cloud.
Epilepsy is a chronic illness, and there is no cure for me yet. I’m reflective enough to know that epilepsy has given me lessons about the importance of taking care of myself, empathizing with others, and the strength of finding yourself under a disease with an awful stigma attached. Would I refuse a cure because of the lessons? Hell, no on that one! First, epilepsy has been a huge burden for my parents. I’m an adult now, but they hate the idea of me being alone. It is a huge weight for them, one they have carried since I was diagnosed. If my child inherits epilepsy, I will be the one holding him or her, watching the blood trickle down their chin and their lips turning blue, praying that each second be the one where they take a breath and it’s over. My child will learn to share their gifts, strengths and compassion with the world, but that they also have to do it under the context of epilepsy, that they will have to tell others, and the reaction of the world is something they cannot control. Now, just for me, the worst thing about not being cured is the “what if.”
I had my hand on reverse. If that seizure had hit 10, 20 minutes later, I could have hit someone with my car. That is something I can’t imagine trying to carry. I am fortunate today that my cloud looms above me, and although threatening, it does not crush me or others. Hurting someone else, even if I had no control, that complication from my epilepsy would crush me.
I am so blessed, and well, lucky, that I am seizure-free, and that epilepsy hasn’t stopped me from going after my dreams, but not everyone with epilepsy is so lucky. I can take care of myself, some cannot. I can think, read, write, learn, communicate, and some cannot. Some have seizures, and some have seizures every day. Our doctors need a better understanding of this incredibly mysterious disease. Three million of us in the United States alone have it. Chances are, you have met someone with epilepsy and just didn’t know it.
I have many blessings, and can give back by telling my story. It’s tough, but my old family doctor is wrong. We need to let people know that epilepsy is an awful disease full of fear, moments of helplessness and paranoia, but with medical advances we can conquer epilepsy day by day, and by talking about it, we can conquer the unfair stigma that this disease can carry, day by day, person by person…until the cloud disappears for good.
For more information on epilepsy, here is a good article.