Fear Club

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It’s amazing how much a stranger can affect your life.  I never met Alyssa O’Neill.  She died too young, too soon.  Yet she’s meant so much to me.  It’s hard to put it into words.  It feels like she was my little sister, my daughter, or myself.  She could have been any of those.  Seizures took her away from the world far too soon.  She was only 18.  I hope to meet her parents someday.  I want to hug her mom, Sarah, like she was my best friend.  Their tragic loss has brought so much pain and meaning into my life.  I didn’t have to know Alyssa to know her struggles.  She shared mine.  I wish I could have met her in real life, but her memory will live in my heart forever.  You never can tell who will change your life.  Even people you never meet.

In an online world of strangers and anonymous tweets, I have found so much friendship in people who do not know me and yet know me completely at the same time.  Anyone whose life has been touched by the cold grasp of epilepsy knows.  Strangers have become united with me, bound by our secret fear.  We are suddenly like family.  They understand me.  I understand them.  Seizures steal away everything and then come back for more.

Alyssa’s story is sadly not unique.  50,000 other people will be lost to seizures this year alone.  Every single time I hear of someone dying from a seizure, I cry.  I cry uncontrollably with tears and snot streaming down my face.  Even people that have been dead for years, that I never knew, when I hear about it, I cry.  I don’t have to know them to feel their loss keenly.  It’s such a shitty way to die, to leave the world screaming and shaking.  It is terrifying.  Whenever I hear that somebody had a seizure, I feel pain for them.  Living with a disease that is so misunderstood, it’s like we have a secret seizure club.

The un-anointed don’t even know that they don’t know.  If you’ve never had a seizure, if nobody you love ever has, good for you, bless your soul.  You just don’t know the depth of it, you can’t know.  And that’s okay.  I do not wish the price of knowing on anybody.  It’s not the kind of secret club that you want to get into.  Woe is us who know the true power of a single seizure, a single lost second.

Those who have seizures, and those who love us, know what the rest of the world can’t see.  We live in a cage, trapped by our misfiring brains.  Not all rapid misfiring of brain neurons can be seen.  And the mountain of fear they leave behind is invisible.  Oh the fear!  There is not a word in the English language that describes the dread of having a seizure.  I searched online and came up with a German phrase “to fear for one’s mortal life: Um sein Leben Bangen.”  It sounded right.  My moral fear does involve banging my head.  That fear has never once left my side since 1997 when I woke up in an ER and was told I just had a seizure.  Not once.

Recently I came across this meme, by Epilepsy Nation:

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It is so true.  I have envisioned my epilepsy like a war, a ball and chain, a tornado, a thunderstorm and lightning.  I never thought of it as a stalker before.  But that’s exactly what it is.  Epilepsy stalks me.  I take precautions against stalkers and seizures the same way; I don’t go out at night alone.  I close the curtains tight.  I warn other people to be on the lookout for me.  “Hey, if I have a seizure today…”

There is still a huge stigma against epilepsy.  It binds those of us who share the scarlet letter together.  Epilepsy is a black cord that ties us, the more we struggle, the tighter the bonds become.  Epilepsy is a struggle every day.  The only way we can get out of it is to work together.  We need more epilepsy awareness!  We need more epilepsy research!

Epilepsy has been described in medical texts for thousands of years.  It was called “The Sacred Disease” by Hippocrates in the 5th Century BC.  The oldest reference to epilepsy was found in Babylonian cuneiform dating back to 1067 BC.  So why haven’t we figured it out yet?  Why don’t people even take it seriously yet?  Funding for epilepsy research lags far behind.  Epilepsy doesn’t even get its own category of funding from the government.  It gets grouped into other neurological disorders.

Epilepsy isn’t just one thing; it’s a multifaceted spectrum disorder with over 40 types of seizures, with countless causes.  Some people have seizures because of traumatic brain injuries or tumors.  My brain is just wired completely wrong.  It looks okay, but it doesn’t work okay.  They have barely started to map the genetic basis to my epilepsy.  Could the key to electrical overstimulation lurk in my genetic code?  Who knows?!  And with the current levels of research, I fear I’ll never see an end to my seizures.  Not until they kill me.  I live with that fear every day.  The first rule of Fear Club, is we HAVE to Talk About It!

Please.  Don’t let more people like Alyssa die.  It can happen to any of us, at any time.  You cannot predict a seizure.  Please Pay It Forward for her and all of the 50 million people worldwide who suffer in mortal fear of our daily lives.  Not one more second lost to seizures.

Fund Epilepsy Research!

#AJOForever

Dear Sarah and Jason O’Neill, Thank you for all your hard work.  Every day more people are talking about Alyssa and Epilepsy.  That is a gift to us all.

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15 Comments

Filed under Living w/ Epilepsy, Non-fiction

15 responses to “Fear Club

  1. Tears are falling, everything you have said here is so sadly true. Lives are turned upside down and it is as if people don’t care enough to do anything. Every little helps it has to make a difference a thing as much as a tear drop can ripple out to touch many people who have never even met. Thank you so much for sharing this. It means such a lot and sadly rings too true 🙂

  2. Thanks for reading. I’m sorry to make you cry. 😉 You can be in my seizure club anytime.

  3. angela stimson

    Thank you for this, the concept of a seizure club really resonates as does asking people to look out for me as I may have a seizure today. Seizure club, yes, so that we don’t have to try to describe to non members the feeling, the knowing, the weird haywire jump cut feeling of petit mal. Looking down a pile of broken crockery that I had been carrying one second previously before my brain “slipped”. I know as soon as I wake up when it’s lurking on the periphery of my brain ready to strike with increasing regularity throughout the day til bang ! it misfires into an electrical storm. I feel as though my brain “slips” , only way to describe it.
    Ativan works as my rescue drug 70% of the time. But then for the next few days before it gets out of my system, wow ! Descent into a grey hell of depression and total exhausted. But then! out of my system and back to being my usual chipper, Pollyanna type self, coupled with relief of disaster and potential death sentence somewhat averted tip next time…

  4. Heather

    WOW!!!!!!!!!!!!!!!! YOU STOLE THE WORDS RIGHT OUT OF MY MOUTH!!! My 9 year old daughter suffers from Epilepsy!!! 💔💔💔💔💔💔💔
    Thank you for making me realize the are others who are fighting this awful battle!!!!

  5. When I came across this blog, my heart was in your court. I can’t imagine the fear of having epilepsy. I lost my best friend and soul mate to SUDEP 2 months ago. He lived so freely. He never let his epilepsy get in the way. There are points where I’m so grateful he lived life to the fullest but unfortunately it left me in the dark to the sevarity of this condition. He was a free spirit and changed my life for the better. His name is Joe Kessler. He was 25 years old. I saw him have a seizure and you’re right, it’s so scary. Complete loss of control and for me watching it all I wanted to do was make it stop and for him to be okay. Since his passing I’ve met so many people and read many stories but this one really touched me. This was so raw and hit home. I am doing everything I can to spread awareness. I send all my love to you. Joe was a true inspiration. I know he would tell you to keep fighting. Keep raising awareness. Stay strong. Epilepsy may always be in your shadow but live to the fullest and love with all you’ve got.
    Wishing you all the best in your fight! Please email me if you want to talk. I’d love that.
    My heart to yours
    Nicole.

  6. Oh Nicole, my heart goes out to you! I’m so sorry for your loss. Thank you for you kind words.I will email you, I always need more friends in my Seizure Club. Best Wishes! KT

  7. Thank you so much. Best wishes to your daughter.

  8. Thank you so much for sharing your story with me. Thanks for reading. You’re in my seizure club now.

  9. the words you have written are awesome..I have epilepsy and it is difficult to describe to others the haunting fear that anytime i can have a seizure. The stigma that is still attributed to it makes me not want to tell others about my condition. it seems they begin to treat me differently. I hate when my brain slips too..and soap is all over the floor. I hate that i have to use plastic for fear of breaking beautiful china. but there must be something done. to replace the fear with reassurance. It is a difficult disease to live with..I have found my faith has helped me with the depression . you are inspiring please keep posting!

  10. Denise Hysmith

    Thank u for that wonderful story. I wake up n worry, i worry all day n when i kiss my husband goodnight, i wonder if i will wake up. I worry he will sleep thru my seizure, i worry my children won’t hear me in the shower if i have one, i worry at work..i worry 24/7…

  11. yes. all the time. but we are not alone.

  12. Tammy

    What a beautifull story. I’ve only had seizures for three years. But dozens of them. Its hard to find a place to call your own in the world. Nice to know so many people care

  13. Valerie McGuire

    My beautiful 11 year old daughter died this summer in her bed while we all slept. No one ever told us this could happen. She only had about 5 seizures in her life. The pain of losing a child is so unbearable. I have a page dedicated to her to raise awareness of epilepsy and to write her letters about life without her.
    Madelyn McGuire – angel on earth
    I am going to share your blog there too. I will pray for you. 💜
    Valerie

  14. I am so sorry for your loss. I will follow your daughter’s memorial page.

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