Epilepsy is a ball and chain that I must drag around with me. But what other choice do I have? I am a prisoner of war. I fumble along with it bumping along after me. You might not believe it, but I don’t really like to talk about my seizures. I like to write about it days or weeks or years later when I can distill the words that describe my hell. When I’m in the middle of it, walking through the war-torn countryside of a seizure, I’m not talking. I’m seizing and I’m sleeping and there’s nothing to be done. I just have to wait until the storm passes. However long that may be, I have no idea. I don’t tell many people when I have a seizure. (I hate telling my mom, she worries.) I tell my husband and children, that’s about it. They are there in the trenches with me. They usually know before me anyways.
There have been many time that I’ve woken up to someone telling me, “You just had a seizure.” “Um… Okay. How do you know?” is my standard confused response. I’m there, I’m gone, I’m back, and I’m confused? I have no idea what my seizures look like. I consider myself lucky that I’ve never had to see somebody else have a convulsion. I don’t want to know what happens when I’m gone, when my brain shorts out. I am eternally sad that my children have seen it. It must be so scary for them.
There is nothing I can do. Seizures are part of who I am. I am affected every day. I have had to make so many sacrifices. I had to say goodbye completely to driving. I will never drive again. It was a hard break-up. I cried. I loved driving. It was a happy love affair, I was a safe driver. I may have glossed it over in my mind by now of course, the sunny pre-war years. But I never got a ticket. That says something right? I was an excellent driver. I loved driving so much. But we have broken up and it is forever. I tore up all our pictures and burnt our love notes.
It is just not safe for me to drive. It’s not safe for me or for my kids or for anyone else. There are days when I feel like I am seconds away from jumping into my car and driving off into the sunset. I wrote a novel about what it could be like. But I lose time and I don’t even know it. That’s the problem with living in a seizure war zone. If I only zone out for a second or two or twenty, nobody notices. I have no idea how many seizures I have. And then I forget anyway.
It’s been years now, so most days I don’t have to think about not driving. But I just don’t go places anymore, not like an able bodied person. It’s hard to depend on other people for rides. I hate having to ask. I feel so weak. Most people haven’t even seen me have a seizure, so they don’t even know; my war is an invisible one. They don’t know how dangerous normal life is for me. How deadly normal life can be for all people suffering with epilepsy… It is a war after all. I wave my white flag and call for a treaty, but there is none to be had. We don’t have the research funds to even start.
On September 4, 2013 a beautiful, hopeful, young woman, Alyssa O’Neill, lost her battle with epilepsy. She lived in my hometown and had just started college to be a nurse. She wanted to help other people with epilepsy. She only got to attend classes for a few days.
The day she died, she sent a text to her parents saying she wanted to have a Pumpkin Spice Latte. Her parents decided to buy Pumpkin Spice Lattes for strangers in honor of their daughter with the hash-tag #AJO (her initials) written on the side. My mother-in-law, Deb, called me to ask what a hashtag meant. Alyssa’s parents had bought several of the drinks from her, on the Penn State Behrend campus where Alyssa was enrolled. Deb put up Alyssa’s photo and soon the campus was buying Pumpkin Spice Lattes until they ran out. It made the local news.
Then Alyssa’s story went viral. Soon the entire world is “Paying It Forward” and buying Pumpkin Spice Lattes and paying for the groceries of strangers. Many of my friends have received something from a complete stranger. My son came home from school with a water bottle labeled #AJO and wrapped in purple, the color of epilepsy awareness. All because Alyssa wanted to try a Pumpkin Spice Latte on the day she died and she was a kind soul who was taken too soon. Behind every gesture is epilepsy awareness. Alyssa isn’t here because of her epilepsy. She should still be here. Epilepsy is a bloody war.
Poor Alyssa! I cry every time I think about her. Tears are running down my face right now. She was just a baby, only 18. I never knew her, but I am just like her in some ways. There is a world full of people just like Alyssa! We are epileptics and our brains don’t work quite right all the time. We are all fighting a war and it’s not our fault. We do whatever we can to stop the seizures, but there is no cure. The end of the war is not in sight. In 30% of Epileptics medicines don’t fully control our seizures. They are called breakthrough seizures. A fitting term I think, since it’s like hitting a brick wall and slamming through. I take my meds, I follow the rules of engagement, but I still have seizures that I am and am not aware of. The world is a very dangerous place for people who lose consciousness and fall down without a warning.
It could have been me. I could have died in a shower as a college freshman. I was having seizures then and I didn’t even know it. It haunts me like the ghostly twins in The Shining, waiting around every corner. I don’t like to say it, I don’t like to face it, but I could still die any day. I had a seizure last Saturday evening and then another early Sunday morning while I was in bed. At least I was in bed. It’s one of the safest spots to have a seizure. Unless I fall out of bed. I have done that many times, and it sucks. My tongue hurts just thinking about it. Having a seizure in the shower is one of my worst fears, like a tiger that stalks me in the forest. The stripes blend in with the bamboos shadows and I have learned to be oh-so-wary. No showers when I’m home alone. No driving. No ladders. No movie theaters. No video games.
So far I am alive! And yet so many others are not. I mourn Alyssa and all the other epilepsy warriors who have lost the battle. Over 50,000 epileptic die every year. We are losing the war. Otherwise healthy and happy, beautiful young girls, with the world in front of them, die. Children die, old people die, mothers and fathers and brothers and sisters and daughters and sons. Anybody can have a seizure. It cuts across all boundaries; race, class, religion, age. All you need is a brain. I think it’s time to come Out of the Shadows and Talk About It! Scream it from the rooftops! Epilepsy F-ing Sucks!
I am so sorry for Alyssa’s family and I am so grateful for their cause. For MY cause! We have to raise awareness! It’s a battle every day. Wonderful children are at risk every day. I am at risk every day. I try so hard to minimize my risks, to be safe, but having a seizure is never safe. Even under the safest of circumstances. Even when you are at home.
I am glad to see the world talking about Alyssa and epilepsy. Football star Dan Marino tweeted #AJO! Her story has been on several national websites, Ellen and Yahoo and more! People around the WORLD are taking pictures of their Pumpkin Lattes. The world needs more kindness. The world needs more epilepsy awareness. I feel like the world is finally paying attention to all of us who worry and wonder when we will have our next seizure and will we even remember? There are over 3 million Americans living in the shadow of fear of epilepsy. I am so sad that it cost Alyssa her life. I can’t help but imagine that she would be happy to know what it’s meant to so many people.
Rest in Peace Alyssa Josephine O’Neill. Epilepsy Warrior Angel: I am so proud of you.
*If you can, please donate to her foundation. Her family is starting a scholarship fund for nursing students and for families who must travel for their children’s medical care. Our hometown Erie, Pennsylvania lacks an epilepsy specialist. Alyssa’s family had to take her out of town for treatment. I have also had to go to go out of town for testing. It is a burden. I have had to cancel appointments because I could not afford to go. Nobody should have to forgo treatment because they can’t afford the trip.