Tag Archives: SUDEP

Purple Rain for Epilepsy Awareness

Purple RainAs we mourn Prince and await the results of the autopsy, I want America to know something about his life, and maybe his death.   Prince had epilepsy.  As a child he suffered from seizures and was bullied as a result of it.

Prince claimed that he was “cured by an angel.” Unfortunately, some seizures can seem like religious experiences.  It’s called an ecstatic seizure.  It’s rare, but real.  I’m glad that Prince believed he was cured of epilepsy.  I’m glad he went decades without having a seizure.  Do I believe he was cured?  No.

Once an epileptic, always an epileptic.  Even if you haven’t had a seizure in a looooooong time, surgery, medicine, medical marijuana. You will always be an epileptic. Even after 40 years of seizure-free living, at any moment a seizure can snatch away a life and leave no evidence.

I’m not saying that a seizure killed Prince.  But it is a real possibility.  Every time I hear the radio or TV say “unknown cause” I want to scream, “Not for an epileptic!”

We have our own special death: SUDEP Sudden Unexplained Death in an Epileptic Person.  Prince was an epileptic.  It is a life-sentence.  If there is no cause, then it’s SUDEP.  I want the news to say SUDEP when they say it could be the FLU or an OD.  Just say the word.  Let the world know ALL the possibilities.

Whenever anyone with seizures gets sick, the risk of a seizure is increased.  When you end up in the ER after a seizure, the first question they ask is, “What drugs did you take?”  The second question is, “Have you been sick?”  Anything could cause a seizure.  Any seizure could kill.  It’s a possibility.

If I am found dead and unresponsive, don’t call my death unexplained.  Call it SUDEP.  Even famous people die can die from epilepsy, for no reason at all.  That’s epilepsy.  It’s cruel and it’s heartless.  I don’t believe that there is any amount of time that may pass before I am “cured.” I might enjoy a long seizure-free stretch of time.  But there are no guarantees with seizures.

I love you Prince.  I don’t believe you were cured by an angel but I’m glad it gave you peace.  That’s all we can hope for in this thing called life.

Advertisements

Leave a comment

Filed under Current News, Living w/ Epilepsy

Seizure Drunk

starrynightfusedglass

Whenever I end up in the hospital they ask me if I am on drugs.

The only drugs I am on are legally prescribed, anticonvulsant, pharmaceutical drugs.  The doctors ask me repeatedly if I have taken any hard street drugs.  They never believe me when I say no.  I am honest about my eating and caffeine and drinking habits.  I tell the truth about smoking.  I do not take drugs.  They never believe me.  Seizures look like drugged out states.  People in pain look like junkies.  I apparently look like both.  My liver has been infected, so clearly I was an IV drug user.  I am honest to a fucking fault.  Ask anyone.  I’m not known for keeping secrets.  I’m not on drugs.  I have never stuck a needle in my body, I’m not on drugs.  I’ll tell the doctors the truth.  They don’t believe me because seizure victims look like drugged people.  They don’t like drugged people.  They certainly didn’t treat me well when they thought I was on drugs.  I don’t know why seizures make me vomit.  But they do.  I’m not drunk or on drugs.

When they knew I was having a gallbladder attack, I was treated kindly.  They at least saw me expediently.  Of course, due to my liver, they asked me time and time again, have you ever taken IV drugs?  I tried to explain how difficult my veins are to find.  I would never be able to be an IV user!  My daughter’s cesarean birth was delayed because five or six different nurses couldn’t get the IV in, on several different spots, on both arms.  I’m not a drug user.  I’m an epileptic.  It’s a real bitch.  On so many levels.  My liver was most likely infected because of my seizure meds, or my rotten gallbladder, which has since been removed.

The last time I was in the ER they sent me home with paperwork that said I had an “Altered Mental State-Resolved”.  It took me a few days, because my brain was too foggy and mushy to care, but I eventually realized that it that said nothing about seizures.  I asked my husband what it meant.  He shrugged.  “Does that mean drugs??”  He nodded.  “I was having seizures all day!  I have epilepsy!”

“They can only judge what they see. The ER Doctor didn’t see you have a seizure.”

She only saw my confused, postictal, fugue state, that lasted an entire day, accompanied by vomiting and dehydration.  I get it.  I get it.  Seizures are scary and confusing.  Sometimes I wake up to people looking at me like what the fuck did you just do?

As it was happening, I was screaming, trapped in my head.  I’m an agreeable enough person.  If you tell me to come down stairs, I’ll come downstairs.  When I had my gallbladder attack, I met the paramedics at the door, ready to go with my purse and wallet and coat on.  The altered mental state time, I was stuck in a seizure unlike any other and I couldn’t control my body.  Even if I thought I was talking, I wasn’t.

The brain is a cruel mistress.  I would be lying if I said I didn’t enjoy my brain.  I amuse myself with puns and allegory.  I am proud of my writing.  That is all my brain’s doing.  But my brain also hijacks my body.  Just like a terror attack, everything is okay.  Until it’s not.  The Brain Bomb goes off and I drop to the ground.

My brain makes me cranky and sensitive to sound and light.  I can’t drive because I can’t trust my brain to keep me conscious.  It’s a real pain in my ass.  My family can tell when I’ve had a seizure.  They have to tell me.  I change somehow.  I can’t tell you how because I don’t remember.  My voice changes, my eyes look around with childlike wonder/terror.  I can’t think of the words I want to say.  In the days after my handwriting changes.  If I can even write at all.  I am not in control of my body.  I vomit and spill water all over myself.  Did I mention it’s a real pain in my ass?  Once I spilled water on myself.  I was unable to drink it.  I hoped that perhaps osmosis would be enough, so I laid in the water for hours and hours.  I hoped we had some left over gills from our common fish ancestors.

My head is half-pounding today, the pain lingering behind my eyes and centered in my forehead.  It feels like my brain is mushy somewhere inside there, like my spinal fluid levels are off.  Headaches are usually a sign of a seizure.  It’s classic postictal (post-seizure) state.  It’s a ice pick through my brain.  Just like that man who had the train spike through his skull and lived.  That’s how I feel.  I look like a drunk, drugged out person.  Apparently, I look like someone who is unworthy of sympathy.

Maybe that is why so many people are dying from heroin.  They are afraid to seek treatment.  I am afraid to seek treatment.  I’m not even on drugs.  I don’t want to be treated like I am.

A seizure is so much worse.  I can never get clean.  There’s no rehab for me. I can just hope that the next time the hospital will believe me.  I didn’t take any drugs.  I’m having a seizure.  It’s not my fault.  I’m not drunk!  I’m trying to answer your questions.

The first time I ended up in the ER, in 1997, they asked me what drugs I took.  The most recent time, in March, they asked me what drugs I took.  The answer is always the same, “What the hell are you talking about?  I was just at home, minding my own business, not taking drugs.  What the hell happened??”  Seizures are like that.  When you blackout, you are black out.

I wish people understood.  I wish the paramedics and ER doctors understood at least.  I’m going to keep talking about it until they do.  What else can I do?  I am at the whim of others when I have a seizure.  It terrifies me.

Leave a comment

Filed under Essays, Living w/ Epilepsy, Non-fiction

No Common Sense For The Commonwealth

Cannabis_plant_from_'De_historia...'_Wellcome_L0051246

I have long been a silent supporter for medical marijuana.  But I was afraid to really speak out.  I was a Nancy Reagan’s “Just Say No” kid.  Would the moms shun me at the school if they knew?  It was safer to stay silent.  So what happened?  Charlotte Figi happened.  When Charlotte’s Web hit the news I cried.  I was so happy to see this beautiful little girl reclaiming a life that she almost lost due to seizures.  I was so happy for her and her family.  And then I cried for my children… They have to live with a mommy who sometimes screams and falls down.  That is the worst effect of my epilepsy: my kids have to see me have a seizure.  If you’ve seen a seizure you know, it’s pretty much the worst thing in the world.  If you haven’t, lucky you.  I hope you never do.  Unless you work in Harrisburg or DC: I would love to have a seizure in front of you.  You will be rightfully frightened.  Seizures change everything.

Parents in Colorado and New Jersey and Pennsylvania are fighting to get their children marijuana.  How could I stay silent?  It IS a matter of life and death.  Seizures kill.  Epilepsy is a terrible disease that holds us in a cold grasp until we die. People die from seizures and seizure related injuries everyday.  Over 50,000 Americans lose their life every year.  For me it’s all about seizures, everything in my life is about seizures.

Medical marijuana can SAVE lives.  The Epilepsy Foundation supports medical marijuana.  The nation’s largest epilepsy organization is advocating for marijuana.  That’s huge!  The seizure preventing effects are visible and undeniable.  ALL epileptics need access to this natural medicine that is recommend by Surgeon General nominee Sanjay Gupta and my personal doctors.  I’d like it if Pennsylvania would allow me that courtesy.  23 other states would.  I’m tired of my government treating me like a criminal.  I’m not a bad person.  I just want to have less seizures.  I want to stay conscious at ALL times.

The Pennsylvania Government denies that there is any valid information in the hundreds of studies not done in Pennsylvania.  All the scientific literature does not matter to them.  They insist that they would have to re-do the studies here.  But they won’t do the studies.  Science doesn’t matter to them.  The fact that the federal government has a patent on cannabis (Patent #6630507) means nothing to my so called Representatives.

I read the studies.  The information is there for the taking.  The internet grants us immediate access to governmental documents and scientific journals.  I am convinced.   Marijuana has been known for CENTURIES as a treatment for epilepsy.  Why should I suffer for being born in the wrong century and state?  I just want to be able to grow a plant and stay conscious.  Marijuana can help.  There is anecdotal evidence.  There is scientific evidence.  I’ve had too many seizures to just sit by and wait for Pennsylvania to grow up.  For years I suffered in silence.  I felt so alone in my unstable state of consciousness.  I thought that nobody understood me until I met other people living with epilepsy.  I need to educate the world about my deadly, deadly disease.

I was diagnosed with Temporal Lobe Epilepsy was in 1997.  I was 20.  I went to bed with a headache and woke up in the hospital, talking to my mother on the phone.  She asked me where I was.  I didn’t know.  I had no idea why I was on a phone.  The last I knew I was sleeping.  I could not believe that I had a seizure and was in the hospital brought by ambulance.  It was the first time, but not the last.

They kept asking me what kind of drugs I was on.  That made no sense.  I don’t take drugs. I had taken a biology exam and came home to sleep.  They tested me.  No drugs.  I was confused and angry.  I had another seizure coming out of the bathroom holding the warm container of my own urine.  I don’t remember much else.  Days later I saw a Doctor.  I can’t remember his name, he was just the first of dozens.  He told me I had Idiopathic Temporal Lobe Epilepsy.  It was a diagnosis that I could barely understand despite my years of college anatomy and physiology.  He also said Seizure Disorder but I liked that term even less.

I understood I had a seizure or I was trying to understand that. But I didn’t really believe it.  And I certainly didn’t believe that just because I had one seizure meant that I was going to have another.  I was wrong.  Poor Past Katie, she was so wrong.  That wasn’t my first seizure.  It was just the first time somebody saw me have a seizure.  Over time, as I learned more about my seizures, I realized I had hundreds of un-diagnosed seizures.  I have had seizures my whole life.  I will have them for the rest of my life.  Hopefully they won’t kill me.  I think that every day.

My diagnosis  has not changed over the years.  It’s still Idiopathic (Unknown cause) Temporal Lobe (part of the brain on the side, controls memory and emotions and so much more) Epilepsy (lots and lots of uncontrolled burst of electricity in my brain.)  There is still no reason, no cause, no warning when a seizure might happen.  My brain has too much electricity.  Yee-Haw!  It’s a rodeo!

I’ve gone years without seizures.  Ah, the good years; the sweet seizure-free years.  The longest I went without a Grand Mal (a massive, convulsive, secondarily-generalized seizure) was seven glorious years.  Now I am happy for seven days sometimes.  It’s been 14 days today.  I am finally feeling normal again.  My body has more or less physically healed from the last seizure.  The depression has lifted.  But who knows for how long?

This year the record is 42 days seizure-free.  Then I ended up in the hospital with gallbladder disease and had a cluster of seizures in June. They played fast and loose with my seizures in the hospital.  They gave me so many different injections and bags of saline and radioactive isotopes.  I don’t know what they gave me.  I had a seizure in the bathroom.  I bit my tongue and bled all over myself.  I wandered the halls and looked for my husband whom I had sent home.  I couldn’t remember doing that.  I was dazed and confused: lost in the hazy aftermath of a seizure.  At least I didn’t fall out of bed that time.  I woke up covered in blood and vomit and had no idea why.  Nobody in the hospital knew.  They don’t know how to treat me.  There is no way to treat me after a seizure.  All I can do is sleep and wait for my brain to reboot.  Seizures are exhausting, for days, for weeks at a time.  It’s not just the half hour that I lost, it’s everything that comes after.  My most recent seizure brought me a bruised rib.  But I didn’t fall down the stairs!  I fell into the banister instead.

I would try any plant that could help.  I’ve tried all sorts of minerals and supplements that I found referenced in the medical texts as a treatment for epilepsy.  Marijuana comes up again and again.  There is enough evidence for me and 85% of Pennsylvanians.  But I don’t have safe access to the strains that are curing epilepsy.  Charlotte’s web isn’t available in Pennsylvania.  The variety matters.  Think of marijuana like peppers.  You wouldn’t say that an Orange Sweet Bell Pepper was the same as a Ghost Pepper.  Jalapenos aren’t the same as Banana Peppers.  They are all different strains of the same plant.  Plants are like that.  When you are in a state with marijuana prohibition, there is no choice but one: whichever one your Dude has at that point in time, which changes all of the time.  Nobody else wants to consume marijuana that won’t even get you high. Children in Colorado are allowed to but I’m not.

The Commonwealth of Pennsylvania doesn’t trust me to live my adult life and make decisions about my body by myself with the advice of my doctor.  More than one doctor would prescribe me marijuana if they could.  I have been told more than once.  Neurologists talk about it with me at length.  We are all hopeful for “new” treatments.  But I am in the wrong state for that.

Is Pennsylvania part of the United States or not?  Nearly half the country would allow me medical marijuana.  It’s as free and clear as beer in Colorado and Washington.  But not Pennsylvania.  I am stuck here in the prohibition years.  No medicinal plants for me.  My seizures don’t matter to the legislators of Pennsylvania.

Seizures are being prevented. How can you allow us to go without treatment?  It is a cruel and unusual punishment.  

And that’s why they call us Pennsyltucky.

2 Comments

Filed under Essays, Living w/ Epilepsy, News

Dead Lines

marijuanabill

I am a Fool for the legislative process.  Or rather a FOOL for the dream of what it could be.  When I watch the nitty gritty what actually goes on I want to lose my mind.  It angers me.  I’m not even talking about the theft and graft and misappropriation of funds and political fighting, the entire process is just so painfully SLOW.  They don’t get anything done because they don’t ever work.  The Pennsylvania General Assembly is in session maybe thirty days a year, if we are lucky.  (I am being kind)  When they are in session it is bulky and slow.  NOTHING GETS DONE.  I have been watching my recent state government on-line and on TV.  Something I cared about got put on the docket.  SB 1182 The Raymond Shafer Compassionate Use of Cannabis bill.  I can’t stop watching, it’s my Sunshine Law Right to watch.  It pains me to watch.

They get nothing done.  I watch it LIVE as is my right.  It is live and it is ridiculous.  The PA House of Representatives starts with a prayer, which is not what I expected from a House built on “Separation of Church and State.”  I’m an atheist but I’m not opposed to prayer.  Still…  I don’t think it’s exactly appropriate.

They had a prayer first and then a long-winded roll call followed by a rundown of what they were supposed to do.  Then The Speaker of the House spent half an hour introducing the guests in the Rotunda for the day.  I don’t care.  You are there, good for you.  Then there was too much time spent on minutia like naming bridges and designating days and weeks in memory of people, places, and events.  And diseases.  Okay I admit I was happy when they gave my own disease Epilepsy an Awareness Day.  But it shouldn’t take so long.  Do we need to have so many?  And shouldn’t the Townships and local governments do the bridge naming?  At least speed it up.  It was frustrating to watch. Then they were done and went to recess for the week.

It was one and half hours of nothing done.  One and half hours, that’s it.  It was Thursday.  (Of course House Reps and Senators shouldn’t work on Fridays.  Not Wednesday either, since they are constituent days; the one day a week they listen to the will of the people in their local offices.)  Basically all of the time was spent on roll call and welcoming the guests.   And then The House was at rest until the next Tuesday. It was a huge waste of time and tax-money.

Nothing or matter or consequence was discussed during their one and half hours of “work.”  Of course I use the term “work” only in loosest sense of the word.

Fast forward to today, June 30, 2014, the final day of Session before the General Assembly has a nice, long, summer vacation.  It’s a Monday now and they have had spurts of activity, an hour or two at a time, ALL weekend long.  They are the premier procrastinators in the entire world!  Everything must get done by midnight!  Now is the last chance to do something of actual consequence until SEPTEMBER 15th.  I’m not against a long Fourth of July vacation, but September 15??  Isn’t that a bit excessive?

If they had worked just a few more hours sooner, worked until 4pm on a few days, they wouldn’t need to work on a Sunday like they did last night.  And again, I do mean “work” in the loosest sense of the word.  But it might actually have consequence today.  Maybe.  We will see by midnight I guess.

If not, all of my hopes and dreams for The Will of the People will be on hold until September.  No more discussion of Bills that could save lives.  Children and adults will die in the meantime.  I hope I don’t.  No really, I do mean “die” in the most stringent meaning of the word.  I’m not hyperbole and hype.  I’m telling you the truth.  Epilepsy kills 50,000 Americans each year.  Fifty thousand of my Epi Friends die because of epilepsy and seizure related deaths this year alone.  The first person I knew that died from epilepsy fell off a ladder when he had a seizure.  No more ladders for me.  Never.  I am bound to the earth and I must ask my kids to reach the top shelf.  It’s just one more risk to minimize.

I get Facebook posts nearly everyday from my many online Epilepsy Support Groups, reporting another death.  Children and adults of all ages are dying.  Babies, teens, adults, the elderly, we are all at risk.  We die in bathtubs and pools and car accidents and in our homes, falling down the stairs, or just sleeping in our beds.  Every seizure is a chance for death.  I hate to admit it.  But it’s true.

I just want the chance to try a medicine that is stopping seizures now and has been for THOUSANDS of year.  There is lots of medical evidence.  This is not new evidence.  One of the Queens of England (Victoria or Elizabeth I, you can google it) used cannabis for treatment of her own seizures.

And if SB 1182 doesn’t get passed in the Senate today, it won’t even get talked about again until September.  We don’t even have the Governor on board or all of the House, but the Senate keeps saying they will pass it, they can pass it.  Then pass it!~  Today!!!  That’s the next step and it needs to be taken TODAY.

When The Pennsylvania General Assembly says their prayer, I hope they pray for compassion and actually vote for it too.

 

 

Leave a comment

Filed under Uncategorized

Seizures Wait for No Government

epi foundation

Dear Honorable Members of the Pennsylvania General Assembly,

On March 15, 2014 another young epilepsy warrior was taken from this earth too soon.  Only days after receiving a standing ovation in The Utah House of Representatives, Charlee Nelson died.  She was only 6 years old.  Her family was fighting to change the Utah state laws to allow Charlee access to a safe, natural medicine to treat her debilitating and life-threatening seizures. The bill was passed in the House. Charlee’s Law came too late for Charlee.  She is an Epilepsy Angel now.

I am crushed.  I can’t stop crying.  It’s just not fair.  She was just a baby girl.  Seizures don’t care.  Anybody can have a seizure at any time.  All you need is a brain.  One in ten Americans will experience a seizure in their lifetime. Today cannabidiol (CBD) oils are offering an alternative treatment for those of us who don’t have seizure control. 30% of epileptics have uncontrolled seizures. We live in the danger zone; everyday could be our last.  Seizures kill over 50,000  Americans every year.

We are given dozens of pharmaceuticals.  Why can’t we just try this natural substance that is working miracles in Colorado right now.  Why I say miracles, I truly mean it.  Thousands of seizures are being prevented.  Why can’t we all try it?  Over 20 states allow medicinal cannabis.  Pennsylvania must join the movement.  Please support The Raymond Shafer Compassionate Use Act: Senate Bill 1182 and House Bill 1181.  Please send it to the floor for a vote immediately. 85% of Pennsylvanians support medicinal cannabis.  I have Intractable Temporal Lobe Epilepsy.  I only want to have less seizures and more time with my family.

I didn’t want to speak out before.  I was afraid.  I didn’t want people to know what I thought about cannabis.  Until I heard about Charlotte Figi in Colorado.  I can’t hold back now.  I want what she’s having.  I should be allowed to have a safe treatment option other than surgery.  I don’t want surgery.  People are dying.  Charlee Nelson’s family fought to change the law in Utah.  It cost her life.  Charlotte Figi was allowed treatment in Colorado and it saved her life.  Would Charlee be alive if she lived in the next state over?  Do you want to answer that question?

Right now there are families moving to Colorado to get CBD oil.  They are medical refugees.  Refugees are people who leave their home for one terrible reason or another.  Leaving to get medical treatment is a terrible reason.  We should not have to leave.  Our lives are at stake.  Charlee is dead.  It’s too late for her.  But it’s not too late for the more than 3 millions Americans living with epilepsy.  There are days when I go to bed fearing that I won’t wake up.  After a bad seizure, I am at risk for everything terrible.  I can’t do anything else but worry and take my meds.  Why can’t I try a plant?

Dr. Sanjay Gupta has “Doubled down” on his claims that cannabidiol is an effective treatment for seizure control.  Please, let me try.  I’m a disabled adult, I want options.  My doctor and I are out of options.  We are at an impasse.  As long as my meds are working “good enough” there’s no options.  I’m not down for surgery, I don’t have tumors that could be removed.  My brain is just prone to electrical storms.  Please give me anything that will slow that down.  CBD is that.  It’s real.  It’s safe.  I need it.  All epileptics need it.  Don’t let more children like Charlee die.  It’s unfair that medical science is being overlooked and held back.  Cannabis has been used to treat seizures for hundreds of years.  I could reference ancient medical texts.  This isn’t new science.

med

I am tired of waiting and having seizures.  I have several seizures this week.  I’m not sure how many.  I didn’t have convulsions so that’s always good.  My brain is hazy from too much electricity.  I’ve been crying for Charlee and her family and for all of us who are suffering from seizures.

I just don’t understand why we have not made this a priority before now.   It’s the 21st century, let us give up propaganda and accept science.  CBD can offer seizure control.  There are millions of us waiting and seizing in the meanwhile.  If you don’t know the seriousness of a seizure, good for you.  I don’t wish seizures upon anyone.  I don’t anyone to see my seizures.  Although I often wish that I could go and have seizures in front of legislators.  Maybe they would believe me if they could see it.

I asked my husband how he knew I had a seizure this past week.  He rolled his eyes at me, of course he knew. He knows the terrible sound of my seizure scream.  What I meant to ask was, tell me what happened.  I don’t remember anything.  I never do.  Which is why I can’t drive.  Losing time is dangerous, it only takes one second of inattention to cause an accident.  I fear accidents involving water; bathtubs, pots of boiling water, swimming pools.  I don’t do any of those things by myself.  It’s a pain.  Epileptics die in water all the time.  I don’t want to.  Of course, tragic accidents are not my only phobias.

I could stop breathing.  Who knows what my body might do during a full blown convulsive seizure.  I throw up after seizures routinely.  Sometimes that my only clue.  Some day last week I threw up in the morning, unexpected and suddenly.  It felt suspicious. Then I had the seizure my husband observed.  I didn’t know about it, he had to tell me.  We were both happy that I just zoned out and twitched and screamed and didn’t fall down.  I am so afraid of falling down, I can’t even explain it.  I don’t want my family to find me at the bottom of the stairs.  I don’t climb ladders.  I don’t use step stools.  I am a “Fall Risk.”  The hospitals always remind me in bright red bands when I am an inpatient.  It’s a very serious disease for me and 3 million Americans.

Now is the time to move on The Raymond Shafer Compassionate Care Act .  We cannot wait.  Epileptics are dying at an average of one every 3 days.  Please consider the thousands of Pennsylvanians who need this today. Please.  I beg you to allow us access to a safe, natural medicine that can treat seizures.  There is money to be made and lives to be saved. I don’t say that lightly.  You could save my life today.  Please, not another moment lost to seizures.

Sincerely,

Kathryn Slagle,  Pennsylvanian Voter and Epileptic

keystone

4 Comments

Filed under Current News, Living w/ Epilepsy

Fear Club

Image

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:

Image

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.

15 Comments

Filed under Living w/ Epilepsy, Non-fiction

The War on Epilepsy

Image

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.

30 Comments

October 3, 2013 · 11:41 am