Tuesday, 16 September 2014

My journey with epilepsy

Hello all. I've chosen to deviate from my normal chat about romance today to discuss an issue dear to my heart. As some of you may know, as I've shared it before, I suffer from epilepsy. Since I was 10, I've had seizures and have taken various medications for it.

We've all made seizure jokes, right? I might even have done so myself, it's become so acceptable. However, whenever I hear one, I do feel a slight sting. Epilepsy has been my cross to bear for over thirty years now, the majority of my life. I do acknowledge in this life there are those with more ponderous crosses. I can honestly say my life is a good one, and my condition is under control.

That doesn't mean I haven't had a few interesting moments here and there. A couple were life-threatening.

My first seizure hit when I was 10. I was standing in a crowded movie theater with my mom and younger brother. The lineups were long, we all carried big winter coats and popcorn. Suddenly, I dropped all the things I was carrying and then promptly dropped as well. I soon began having seizures at school, which generally gave my friends and teachers a start.

I don't suffer from grand mal seizures, the kinds they show you in movies. My condition is known as temporal lobe epilepsy and my seizures look different. My eyes glaze over. I lose focus. I may stand or sit or wave my arms around. I may speak gibberish or out-of-context. They last about 30 seconds and then I snap out of it. I know I've seized because a chunk of time is missing. To me, it's as if I've had a brief nap, and have no recollection of what I've done during that period. I can assure you it's a scary sensation to "wake up" and not know what you've done.

I've had seizures while giving presentations, while watching movies, while riding a bike and in numerous other situations. I once almost wandered out of a bowling alley on my own, my friends in pursuit. During my teen years, the worst period, it wasn't unusual for me to seize 4 times/day. Those were the days I stayed home from school.

The most frightening moment occurred when I was about 20. I had gone shopping at a local mall and went home on the subway. I seized while standing on the subway platform, waiting for the train. Just as the train approached, I seized and began to walk toward the oncoming train. If it hadn't been for a Good Samaritan, I am sure I would have died that day.

Because of epilepsy, I couldn't drive when all my friends did. Only after many years (in my 30's) did I finally get my license. I waited until I'd found the best medication possible and until I was seizure-free. For many years, no doctor would actually diagnose my condition. And once they did, I began taking every medication under the sun: barbiturates that made me drowsy, herbal medicines that did nothing and I even tried acupuncture. I now take a drug called Tegretol and it has allowed me to remain seizure-free. I am often tempted to stop taking it, to see if the seizures have gone away, but I can't ever take that chance. I know I will be on drugs for the rest of my life.

In my new book Vice, which you'll hear more about soon, the heroine has epilepsy. It's the first book in which I've explored the topic and it means a great deal to me. Why have I shared all this today? To shine a light on this mysterious condition. So many suffer from it, many of whom can't rid themselves of the seizures as I have with medication. And yet a lot of people still find it humorous to joke about it. I would never censor anyone, but I would like to share my experience. Hopefully in doing so, it'll become a little less mysterious and a lot less funny.

Thank you.

Rosanna

9 comments:

  1. Thanks for educating us about temporal lobe epilepsy, Rosanna. I had never heard of it before. I'm glad you've found medication that keeps you seizure free.

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    1. Thank you, Cathy. You'd be surprised how many others have never heard of it. I know I hadn't. Thanks for visiting.

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  2. I am familiar with the condition, one of my classmates had it. It was quite terrifying to say the least. Being on the first aid team in the class, we had to pin her arms and legs down so she would not hurt herself. I hated when other made fun of her. I don't know why anyone would make a joke out of it. Glad you found something that helps them keep them at bay.

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    1. Thank you, Seelk. Sounds as if your classmate had grand mal - such a scary condition. The worst part is not being able to control yourself, and not knowing what you did afterward. I'm glad your friend had your support. Thanks for visiting today.

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  3. Thank god for the good Samaritan! That episode would have terrified me too, I'm glad you finally got the diagnoses you needed in order to get treatment, and that you've found a treatment that works so well for you, sometimes doctors can take a while to recognise some illnesses or get patients the treatments they need, some doctors are excellent and on the ball but others just seem to be useless. My aunt finished a course of chemotherapy for an aggressive form of Breast Cancer a few months ago but her GP and Consultant were useless and her illness was mishandled from the very beginning yet my other aunt (who is thankfully in remission and finished all treatments now) had brilliant doctors that handled her Breast Cancer diagnoses brilliantly.

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    1. Thanks for commenting, Suzi. I'm so sorry to hear your aunts had to go through that. And when treatment doesn't go as planned, it can be so disheartening. I hope they are both better. My experience has been scary at times, but I know it could always be worse. We smile and just try to keep going. Hugs!

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  4. I've had many friends in my past who have seizures. I have one good friend now who can't drive because of seizures and I've seen someone have a seizure before in front of me, a person I was very close to at the time, and it terrified me.

    I think people make jokes about things that are they find overwhelming like illness and death, just so they can cope with it better.

    But someone people are just evil. I remember being on a forum once and someone posting,"I have epilepsy. Does anyone else here have it, too?" And a bunch of people posted flashing images in response. She said her epilepsy wasn't triggered by bright flashing images, but the fact that people posted that made me want to beat up every last one of them.

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    1. Thank you EB, for your candour and comments. I sympathize with your friend. I didn't drive for many years, and am still nervous sometimes. I understand people sometimes need to laugh things off, but not at the expense of others. I can't believe the stupidity of the people on that forum. Horrible.

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