Tag Archives: ER

Blood or Bone

keep calm

May I please be explicit: I do not want to go to the hospital due to one, two, three, four, or possibly even more seizures.  Unless I am bleeding or you see bone, please leave me alone.  2000% alone.  If I am unconscious, leave me that way.  If I am still breathing, I am trapped away and I want to be.  I’ll be back soon.  Please do not touch me.  Please Do Not Call 911.  Seizures are not emergencies for me.

Trying to understand what someone is saying to you during and after a seizure is impossible.  It takes too much effort.  It hurts.  I do not want to answer questions about my seizures or anything.  I do not want to be conscious at all.  My body wants to be unconscious for days afterwards.  It needs to be too.  My brain is mush and cannot stay focused.  I want to be home alone in bed, and never in a hospital bed.  I won’t know how old I am when you ask me, and not even what year it is too.  I know who I am when I am me, but who am I when I’m not me?  I don’t want to go to the hospital to find out.  Eventually I know what year it is and the month too.  It just takes me some time.

This isn’t my first rodeo.  This isn’t my hundredth seizure.  I am more aware of my epilepsy and seizures that anyone in the ER.  And I can’t tell them anything.  Don’t call 911 just because I have a seizure.  I don’t want to go to the hospital.  It is unnecessary and terrifying too.  There is no net gain.  We know what we know and we know what we don’t know.  It never changes.  I always want to be at home instead of an ER.

Blood or bone.  Otherwise please leave me alone.  You can prop me up and make sure I don’t fall over but please don’t ask me questions.  Don’t hold me down.  I know it looks scary.  It’s not that big of a thing for me to zap out  every now and again.  Sometimes you seize the day, sometimes the day seizes you.  That’s epilepsy.

Don’t make me go to the ER.  It is too painful.  I can’t have every seizure be an emergency.  After a seizure all I want for days is sleep.  Leave me alone.  If I am drooling on myself, you can wipe my face, otherwise don’t touch me.  Don’t talk to me.  Don’t shine lights on me.  I WANT to be unconscious.  My brain has just shorted out, I need to sleep it off.  Epilepsy is everyday for me.

If you just wait a while I will come around.  My kids and husband don’t bat an eye, they know to put me to bed.  This is my life.  I can’t count how many ER doctors have diagnosed me with epilepsy.  Why are you telling me this again?  I’ve been living in this world of semi-unconsciousness for decades.  I probably know more about seizures than you do, I just can’t answer questions right now.  Soon I will tell you everything and maybe I could teach you something new.  Don’t you think I know what to do in the case of a seizure??  I read all the literature.  I write that literature too.  Can I go home now??

Please do not take me to the hospital over a seizure or two.  I promise I will be back in twenty minutes or an hour or two.  Let my husband decide if it’s a real emergency.  Wait until he gets here.  He will know if it’s a normal bad seizure day or not.  He knows who I am when I am not me.  I am not a normal person, but this normal for me.  I already know that.  Don’t make me wait for another ER doctor to tell me.  I know.

It hurts too much to speak.  If I am not dead, I’m alive!  This happens literally all of the time.  It’s my super-power, back from the brink of death again and again.  If I am breathing and not bleeding please do not touch me.  Wait until I am conscious to take me away. I will tell you if I am having a gallbladder attack or a real emergency.  If I just had a seizure and that’s it, that’s it!  That is my life.  Going to the ER only hurts me.  I am broken in two.  It was the hospital visit, not this seizure or two.

Epilepsy is a painful inconvenience for my family.  But it is simply our life.  It is scary to see, I’m told.  But once you know what it looks like it’s boring, everyday, common-sauce.  I’ll come around soon enough.  Keep calm.  It’s just a seizure.  Ask my children, ask my husband, they will tell you.  Just leave me alone and wait.  My brain just does this.  The ER doctors know they don’t really know anything about epilepsy.  They will tell me to take my seizure meds and get some sleep.  See a specialist, too.  I already do.

Please don’t talk to me and make me answer questions about my medical history.  Just wait and see what happens in an hour or so.  I have talked to many doctors about my seizures.  I promise you, you will not tell me anything new.  And I don’t want to talk about it right now.  All I want, all I need, is some peace and quiet.  The bright lights and endless noises are like an assault.  And I speak from experience there too.  Every time I wake up and don’t know where I am is another scar.

I have seizures.  Don’t get freaked out.  I’ll be back up soon.  Please don’t hold me down.  Just leave me alone.  If I am confused and stumble, hold me up instead.  I gave my children those instructions long ago: when Mom is out of her head, put her to bed.  They were offended.  They already knew.  That’s the ultimate end of every hellish seizure related ER visit to date.  Go to bed.  I already know I have seizures.  My children know.  I just need to sleep now.  Please.  Dear God!  I WANT to be unconscious.  It is good for me.  Everything hurts.  Don’t make me try to explain it to someone new.

Do you know how scary it is to wake up in a hospital and be told nothing new?  I live this way.  Welcome to my regularly scheduled life!  I’ll be back soon.  We can have an eloquent conversation about my seizures then.  Right now anyone who touches me is a motherfucking asshole.  May I sincerely apologize to everyone I may have yelled profanities at.  When I am conscious, nurses and paramedics are my real life heroes.  They are my worst enemy after I’ve had a seizure or two.  Don’t waste your time on me over a seizure or three.  I’m going to be fine and please fucking don’t touch me.  Don’t poke the bear.  It hurts me to open my eyes and my mouth.  My words won’t come out right.  I can only scream.  I am trapped inside my brain.  My brain does this all of time.  I know the risk.  I know the treatment.  I know how scary it is to wake up in the ER for no reason, over and over again.  I know that nightmare too well.  I have nightmares about it.  I would like to never have to do that again.  I don’t need another fresh-faced ER doctor tell me I have epilepsy and give me a one page flier about seizures.  I know.  I fucking know.

I am well-aware of the risks.  I do not want to go to the ER unless I am not breathing or bleeding or you see bone.  A little mouth blood is de rigueur, you can wipe that off and let me be.  If you find me at bleeding and broken at the bottom of the stairs then call the paramedics and please try explain to them that I will be more than a little confused and angry when I start to get back into my conscious head.  If I am just drooling, let me be.

I will come around soon enough.  Please don’t make me wake up in a CAT-scan or MRI tube ever again.  It. is. horrifying.  The noise physically hurts.  They were yelling at me to stay still this time.  I woke up crying from the sound.  My brain can’t process things right now, but I am used to that.  It just takes a little while.  It is my brain and I am used to this shit.  My cognitive processing will come back again.  This was just a little, typical, electrical blip.  I don’t want to go to the ER just because I am unconscious.  I’ll be better soon.

They will not help me there, not just for a seizure.  That’s what the doctors always tell me in an hour or two.  If you have never had a seizure, call 911 right away.  But I’ve had a few hundred and I know what is a medical emergency for me.  I don’t want to waste your time or services or medical expenses.  I do not want tests.  I. want. to. sleep.  I’ll feel better soon.  Please don’t touch me.  I am confused and everything frightens me. I have already read all the books on epilepsy.  If I have a seizure, let me be.  Let me sleep.

Give me a few hours of unconsciousness and skip the dangers of seizures lecture, too.  I am well aware of my unawareness and the usual pattern of unraveling and spiraling back up again.  There is a pattern, I know it oh too well.  I want to call my doctor, so we can have the same talk again.  Take your meds and get plenty of rest.  That is what I was trying to do.  Can you see how the bright lights and hospital sounds could only make this worse?   Ambulances are an epileptic’s biggest nightmare.  I promise this is my normal brain, ain’t it weird?  Leave me alone.  My brain needs a little time to reset.

Epilepsy is a bitch.  But she’s my bitch.  This is just my life.  Ask my husband, ask my children, read my book.  Seizures are scary but they are not always an emergency.  Not for me.  Sorry to give you all a big scare.  I didn’t want to waste your time.  It’s not scary for me unless the paramedics are involved.  They don’t need to be.  This is just the brain I have and I don’t need to go to the hospital.

Stay Calm and Wait Twenty Minutes.  Do. Not. Call. 911.  Even if you are really, really, scared.  Just Wait.  Give me some time to come around.  I will.

Weird, huh?

Advertisements

Leave a comment

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

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

72 Hours

SuicidePrevention

Twice I played an active role in admitting a person to the hospital under a 72 hour watch. Both were voluntarily involuntary. Each time I asked them if they could guarantee me their safety and they could not. Body mutilation is not okay. It is not, not suicide. If you can’t tell me you won’t cut yourself, then you need a few hours away from knives and guns and pills and belts.

I both regretted it and did not regret it at the time. It felt heartless to send them away to be alone in a green room. They are both still alive though, and that’s something. Maybe they wouldn’t have hurt themselves, but we don’t have to know. We don’t have to miss them the way we miss Robin Williams and my cousin Haley. Suicide is 100% preventable. It’s the only cause of death that is.

The first person I admitted was a young girl at the youth shelter I worked at. She was agitated and crying and had cut herself more than once in the past. I asked her straight out, “Are you at risk of harming yourself or anybody else?” She couldn’t guarantee me that she wouldn’t cut herself. I took her to the mental hospital that night. I don’t mess around.

The second time it was my close friend who had just lost her father. She had told me, on more than one occasion, that she would probably need to be hospitalized when her father died. You don’t say that if you don’t mean it. She also told me, more than once, that being hospitalized after the death of her mother was the only thing that kept her alive then. I wasn’t going to let her stay home. She told me too many time, she was too upset. She could not 100% guarantee me that she would not hurt herself. I reminded her of what she told me, how Haldol saved her life. I made her get into the ambulance and leave.

After she left, we went through everything. It was a huge invasion of her privacy. At first I just wanted to wash the dirty dishes and clean the bed, but soon it became apparent that more needed to be done. I had to check everything. I don’t regret checking. Her arms were covered in fresh wounds. There were razor blades in her fucking bed. We took all the knives and her father’s meds. Her father was dead, he didn’t need them anymore.

I regret that she had to spend the night her father died alone, in a hospital, surrounded by people suspicious of her. She wouldn’t visit me when I went the next day. But I don’t have to regret that she is dead because she is alive. And that’s enough for me.

Suicide isn’t something that you want to do forever. It just happens at a peak, at a time of crisis. If you can survive that crisis time, you can survive. The idea of suicide will go away. It’s not always with you. But you have to get past that crisis. If you can keep a person safe for 72 hours, you might just save a life. I hope I did. Twice. Maybe three times.

One other time I recommended a 72 hour hospitalization for my friend. I could feel the mania radiating off of him. He was a different person. I told his loved ones they needed to send him, he wasn’t safe. I wasn’t there when it happened, but when the time came, he went voluntarily involuntary. He is also still alive. He is not suffering from a raging, manic phase. I don’t know how any of these people feel about my role in their hospitalizations. Perhaps they resent me for it. I don’t care. They are all alive to resent me.

I’m watching clips of Robin Williams on YouTube. I can see the pain hidden behind his eyes. I know his pain. I too suffer from depression. Its cold hard grasp keeps me tight despite Academy Awards and Golden Globes. None of that matters. Not a loving family and warm bed to sleep in at night. Depression doesn’t care at all. It can happen to anybody.

And if you can’t guarantee me that you will not hurt yourself in any way, then I’m going to take you to the hospital where they can.

RIP Robin, Haley, Sarah, and all the victims of suicide. The world needed you.

If you are considering suicide,

Please call the Suicide Prevention Lifeline

Call 24/7

1-800-273-8255

The world needs you

2 Comments

Filed under Essays, News

Katie’s Ladder

buena vista

There are times when I can feel the electricity rise in me, when all I can think is: GET DOWN!  I can’t fall if I am already on the ground.  I’ve used this technique with much success several times at home.  Thankfully, I haven’t had to do it when I was out in public!  But I have promised myself, if I ever feel a seizure coming on, I am going to lie down.  I don’t care if I look like a fool, I am getting low quick.  Falling is a big cause of death in epileptics.  There are over 50,000 deaths a year attributed to seizures and seizure related accidents.  I knew of someone who had a seizure and fell off of a ladder.  He did not survive.

So, I don’t climb on ladders.  Since the very day I heard his tragic story, I have not climbed a ladder.   It is such a silly little thing to say, “I never climb a ladder.”  I don’t think people take me seriously when I tell them.  But I do not.  Ever.  It’s not safe for me, one second here, one second gone.  It’s not worth my life.  Finding yourself on the floor is never a good time.  My great uncle fell off a stage and died.  Falling is my biggest nightmare.  It jerks me out of sleep every time.  It is the kind of nightmare that you can’t fall back asleep after because it scared you so much.  So, ladders are right out.  I don’t use step stools either.  I’m short.  It is a problem sometimes.

Now my kids are old enough that they can use the step stool to fetch stuff for me.  I feel bad that they have to help me.  I wish that my kids had the luxury of growing up without a sick mom.  I know it’s a burden on them, I can see it.  It’s a lot to handle to know that your mom might not respond.  But that’s okay; it’s just something that happens sometimes.  Just chill out and wait until it passes.   They know when to call 911 and when not too.  Usually it’s not too.  There’s nothing to be done.  Thankfully I don’t need to go to the ER with every seizure.  What a pain that would be!  They would be so sick of the sight of my face in the ER.  I’m not pleasant after a seizure.  I am usually rather angry and confused.  The term “dazed and confused” more accurately describes a seizure than a stoner!

A seizure is not necessarily an emergency.  It is just part of my life.  Unless I fall and hurt myself or the seizure last more than 5 minutes, I don’t need to be seen in the ER.  Ask any neurologist.  Sometimes my brain has too much electricty and it shorts out.  There’s no reason, and there’s nothing to be done.  I have come to a dull acceptance of that.  It still cuts like a butter knife.  But what else is there to do?

For a long time I was angry.  I denied it but I keep having seizures.  Finally, I could not lie to myself anymore.  When I realized that, my life changed.  That is why I now get on the ground when I feel a seizure coming on.  I do not drive.  I do not stand on ladders.  I do not bathe when nobody is home.  I take my miserable meds, every damned day.  It’s just what a responsible epileptic does.  And I guess that’s who I am.  It was hard to accept.  It was a battle.  It was bloody, as  having a seizure certainly can be.  (Usually it’s my tongue.)  But I’ve accepted it.  I still reach for the stars.  Even I can’t use the ladder.

4 Comments

Filed under Living w/ Epilepsy