Hello all. This is a post I originally wrote back in Sept. 2014. In celebration of epilepsy awareness, I’d like to share it with you once again.
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, I live with 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 or complex partial 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 I 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 edge of the platform. 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, coming Sept. 22 from Samhain Publishing, 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.
21 thoughts on “My journey with epilepsy”
I really don’t know how long I’ve been having seizures for because i also have tia Strokes and where my mother who worked with kids with disabilities was saying i was having both the doctors were saying otherwise. I remember when i was about 14/15 i was going to a football game with friends and i didn’t feel right that was the first one i can remember. I have both partial seizures and grand mal I’ve been on all different types of medication. Tegrotol since i was 5 and i had my first stroke. When i was 21 i had 18 seizures one after the other till i was put in an induce coma. I sometime after that i slept walked during one i was found under a parked car.
Unfortunately medication hasn’t helped me and the reason i have epilepsy is due to a inoperable Growth in my brain.
I had a seizure today I’m going to take some pain killers and try and get some sleep.
Thank you for sharing your story
Thank you for sharing yours, Julie. Hugs to you. I know how frustrating it can be to “zone out” and not know how you ended up somewhere. In my teens, my seizures felt out of control too. Tegretol has been my old friend for many years. I do hope you find a solution for your seizures and will be praying for you. Thank you.
What a great post, Rosanna. I’ve learned some new things today. Thanks for sharing.
I’m so glad you stopped by, Kay. Thank you so much!
Thank you for sharing, very encouraging since we have a daughter with this type of epilepsy!
Thanks for stopping by, Joni, and for all the shares. The disorder becomes a lot less mysterious when people discuss it. As a kid, I felt very alone. It helps to know others are out there, dealing with the same issues. Hugs to you, your daughter and your family. If you ever want to talk, I’m here.
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Having taught youngsters with epilepsy my heart goes out to the young you. That loss of time you describe has to be one of the most frightening things about this illness and especially for a teen. I’m so glad your medication has enabled you to enjoy your life as you should. I’m also glad you have written a charater with this illness to help raise awareness.
Thank you, Daisy. I feel for young people experiencing this disorder. It’s hard enough being a teen without having to worry even more what someone will say and do. I appreciate you sharing this.
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This is something I didn’t know and truly admire your handling of it. I look forward to getting Vice I am sure I will like it as it must have a strong heroine.
Thank you Fran. I admire heroine Kate and do think she is strong. I hope you enjoy her, too.
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Love this post, Ros. Hate you suffered though. I’m wearing purple today, accidentally, but I’m glad my eyes were opened to this on FB and this post.
Thank you, Christy, my friend. I appreciate it but I know full well I’m one of the lucky ones. I’m humbled hearing other people’s stories today, however, and appreciate you reading mine.
Thank you so much for sharing! I didn’t know most of this, and I appreciate learning more. *hugs*
Thank you for reading, Jami! And hugs back!
Thank you for sharing your story. And thank to Julie for her comments. My heart and prayers are with you both. (((HUGS)))
Thank you so much, Pamela. We appreciate you being here.
Thanks for talking about this, Rosanna. I can’t wait to read VICE – I’m sure your heroine is as awesome as you are.
Thank you, Elle. That’s so kind of you. 🙂
Great post, Rosanna! I recently learned my son has epilepsy and takes medication for it. You’re an inspiration for him! Thank you for the post!
Thanks Renea. That’s very kind of you. Hugs to your and your son.
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