The War on Epilepsy

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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.

ajo

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.

#AJOForever

*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.

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30 Comments

October 3, 2013 · 11:41 am

30 responses to “The War on Epilepsy

  1. Nikki

    Since I had my seizure in the shower, I think Steve is really freaked because this happened. I have to live in the here and now and I have been taking better care of myself so I am healthier. Although like you I do cry when reading about her, it is so sad and close……………

  2. Nikki, I was also very worried to hear about your seizure! I am sad and scared but I also try to carry on and do what is best for me. You know what it’s like.

  3. wheeshmarie

    I’ve had epilepsy all my life. After having a 31/2 hour seizure a few years ago I’ve always been more cautious. I’m so glad people are shedding some light on Epilepsy Awareness

  4. Leila

    Your words are exactly my feelings. Having Epilepsy for most of my life and being from Erie, tears flow abundantly at the mention of Alyssa’s story; I feel so connected to the young woman I never met.
    Thank you for writing every word that I couldn’t. Epilepsy sucks. Not having a cure sucks more.

  5. My daughter, Sarah has had seizures since she was seven. She is now seventeen and for the past year has been using a study drug that has somewhat helped her. Her seizures still aren’t fully controlled but they are less severe and happen only a few times a month. When this study is complete she wants to get into another one. She says “it may not help me but it might help someone else”. I hope ajo’s family knows the impact Alyssa has had on other people that are struggling with epilepsy! We’re in this together and we all have to make people aware of what a devastating disease epilepsy is.

  6. Janet

    There are private wars on epilepsy that are waged every day by the prople who live with this disorder. Too bad there is no public war. Epilepsy research isn’t funded because we are not vocal about our need and rarely willing to put a face to the disorder. My son has autism and epilepsy. My sister has breast cancer. You see awareness campaigns everywhere for breast cancer and autism. No one shys away from those spotlights and the research money that is part of that spotlight, but people are reluctant to talk about epilepsy.
    I went on line researching epilepsy awareness. I found t shirts about hope and love, fighting like a girl with purple gloves and wearing purple for a loved one. But they didn’t actually mention epilepsy.
    Epilepsy will not get the attention and money it deserves until it stops being a secret. We need to be loud and persistent and demand research funding for epilepsy. It was funding that is responsibility for the lowering of death rates for breast cancer. We need national attention to be drawn to epilepsy to stop these senseless deaths. We need to come out of the shadows, disclose our sectets and demand research funding now!

  7. Thanks Victoria! We are in this together, my best wishes to your daughter! Keep fighting and spreading the word.

  8. Thank you for reading!

  9. Reblogged this on AJOforever and commented:
    A must-read. ❤

  10. anonymous

    I just happened to come across Alyssa’s story in Yahoo and went to her website from there. Before reading you’re post, I had no idea what epilepsy was or how dangerous and heartbreaking it can be. I don’t know anyone who has epilepsy. Even so, reading through your story, I felt such great sympathy and pain. I’m not even a mother or a care-taker, I’m just a teenager. I can’t even begin to imagine the strength and determination you and everyone else with epilepsy must have. You’re writing truly touched me and I hope my reply encourages you to spread awareness about epilepsy even more. Thank you for sharing and inspiring. May God bless you and everyone who suffers from epilepsy with many more happy years. Keep winning the war against epilepsy, I’m rooting for you!!

  11. Thank you so much for sharing. I was hoping you would like the post. Thank you for bringing so much light to our struggle.

  12. Heather

    My daughter, Gabby is eight years old she was diagnosed when she was five with the dreadful Epilepsy. Everyday is a battle…. medications, the sleepless nights, struggling in school, breakthrough seizures, I was curious to know if Alyssa was on medication? Were her seizures under control? SO SCARY TO LIVE WITH EPILEPSY… ON FACEBOOK MY DAUGHTER HAS A FOUNDATION. Gabby Gives for Epilepsy. Every November we do a fundraiser to raise awareness and $. Gabby has been on Radio Disney a few times talking about Epilepsy.

  13. My life-partner has epilepsy and I have seen her go through many rough times as a result. Your piece was very inspirational.

  14. I am so thankful to read about your trials with epilepsy. My son was diagnosed a year and a half ago when he was 15. His life has been forever changed and my heart aches for him daily. Thank you for sharing your story.

  15. Pingback: Michelle: The Instructor “was at peace with her having seizures” | The Boulder Buddhist Scam

  16. Soocie

    I’m so sorry that you live in fear. Epilepsy is so scary if you have breakthrough seizures.

    My beautiful niece, Maddy, who was only 12 years old, died on June 20, 2013. She had a epileptic seizure while sleeping in her bed that night. She was beautiful and so kind. They call it SUDEP. They’ve named the “sudden unexplained death” but have made no strides in finding ways to stop breakthrough seizures. So many hearts are broken every single day because of “Sudden Unexpected Death in Epilepsy.”

    So many people live in fear for themselves or their loved ones dying due to a seizure. It’s unacceptable that more research has not been done. Unacceptable!

    Here’s my beautiful niece’s Facebook page.
    https://www.facebook.com/MadelynMcguireAngelOnEarth?ref=stream

    Here’s an awesome video of Maddy. A happy video with a lot of her favorite songs. 🙂

    She was here on day and gone the next……..

  17. Soocie

    Mailinator is down right now so I can’t confirm my post yet. 😦

  18. Thank you for sharing your neice’s story. I cried for her. Thank you for reading.

  19. Best wishes for you son. He is not alone, There are 3 million American like him.

  20. Thanks for reading. My best wishes to your partner.

  21. Thank you so much. I do have a question though – where to go for a specialist? We “thought” we were at one – in ERIE – however, I have had too many disagreements with them and their care for my daughter. 2 days after my daughter was seen there and he asked her if she had any seizures and she said I never know he told her she could get her license back. I didn’t let her – two days after she had another seizure. Than on Sept.9th a concussion – and was just cleared from concussion after 6 weeks! (no school or anything for the first 4) Please help us to find a doctor that is a specialist. Our general doctor says Pittsburgh? My email is 4hmtlc@gmail.com

  22. There is NOT an epileptologist in Erie. You can try Pittsburgh or Cleveland Clinic. I am so sorry to hear about your daughter’s struggles. Hang in there. I really can’t help you find a specialist, but I can tell you that you WILL need to leave Erie.

  23. nirile

    Um, 50,000??? A year??? That’s insane. That’s like a town the size of Lake Charles falling off the map. (No insensitive pun intended).

  24. I am not offended by your hilarious pun because it’s true. a fucking city dies every year from seizures!!

  25. Beautifully written Voice from the Trenches. I lost my beloved son Eitan on Valentine’s Day this year to SUDEP — he was 18, a freshman in college, and we had just had a conversation re the frustrations of living with epilepsy three days before. (Please see my essay on his epilepsy at eitansternrobbins.com.) We live in the Boston area, with a great hospital for epilepsy — yet Eitan’s neurologist never mentioned the possibility of SUDEP. A common problem, doctors choosing not to “alarm” patients. I was worried when you wrote, “At least I was in bed. It’s one of the safest spots to have a seizure. Unless I fall out of bed.” Because that’s what we believed too — but in fact, epileptics that have seizures in bed (as Eitan did) are at a higher risk for SUDEP. Not to be alarmist or anything! Eitan actually wrote something very similar when he was 15, in writing about his epilepsy.
    I also want to bring more awareness of this little-understood condition to the world. Are you familiar with Danny Did? They’re doing a lot to publicize SUDEP, and the epilepsy Foundation formed a sub group just this year devoted to SUDEP awareness (ironically for me, in February).
    I wish you health and lots of strength, and thank you for sharing your story — you speak for thousands.

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