I found myself in a group of 10 [...]]]> I attended a support group meeting for epileptics last night. Skeptic at first..not sure anyone else could relate to the hallucinations, delusions and demons of my past or the ensuing hassles of neuro-health care that present troubles daily..just trying to get through a full turn of the clock.

I found myself in a group of 10 people, all about the same age and each one of them knew the classic, standard opening line of..”yesterday, I woke up on the floor in a room I did not recognize..turned out, it was my living room.”

They had all experienced some form of lost time, lots of lost memories, lost consciousness  and the sticky part..undependable consciousness.  It’s hard to find a job where the boss doesn’t care if you occasionally pass out with muscles jumping in spasm only to wake 30 seconds later confused, weak and unstable.   I believe I can speak on behalf of everyone with this condition… we hate to make a scene and even more, we hate being the scene.  We all share a little bit of shame upon waking.   We are momentarily confused,  sore and disoriented. (Someone compared the feeling to being hit with a tazer- gun).   EVERYONE around us will consistently say:  “It’s no big deal. Are you sure you are OK?  Can I stop my life in some way to help you? ” (just how it sounds to me).   We are grateful for that. However, secretly,  none of us believes those reassuring words, because  to us,  no matter how small or brief the disruption of our mental functioning was..it’s a big deal. Our bodies and brains  hurt, we wake up  out of breath (most seizures stop your breathing reflex)  we have no memory (at first) of what just happened or why.  We all  apologize all over ourselves, a hundred times, to anyone who was witness to our neural lapse.  It’s embarrassing on a base level..speaking for myself,  I always feel I have let someone down by getting knocked out of my senses.   I can’t  promise I will be conscious at all times.   Unfortunately, being dependably conscious is a requirement  of most jobs.

It is comforting to know there are so many others who know EXACTLY how it all feels. Most are managing a successful life despite these little lapses.  To my surprise, 8 out of the 10 people in the group (including myself)   live alone.  None of us want to live alone and none of us want to impose our neuro-glitch on a room mate that isn’t a partner or relative.  On the other hand..what good would it do for an epileptic to have a room mate with the same condition.  Watching a friend seize can actually start a stress related seizure in the room mate.  Catch-22.

We are not broken.  We are not contagious. It seems we are more ‘afraid’ of  our seizures than any watching…but in my years..I’ve discovered that EVERYONE has something they must personally ‘deal with’.  Omission of the ‘ demons’ noted.

The 10-day donkey ride through Hell. I know the story beginning to [...]]]> I feel my skin tingling. My fingers tap the table..antsy. I catch myself pacing, no music, no chores..lost in thought. Ruminating thoughts that have looped through my brain waves more than  a hundred  times over the past 3 years.    The next book.

The 10-day donkey ride through Hell. I know the story beginning to end from many different angles.  It’s the dark comedy of those 10 days in 2005 that nearly killed me..and changed my life, forever. The story of those 10 days that began innocently enough then turned very dark and life threatening so fast. Day 1: Friday.  I  took Tylenol..under another brand  name for the ache of a pulled muscle.  It clashed with my seizure medications and my liver shut down, the seizures started and I began throwing up. I was taken to the hospital, stabilized, contact made with Dr.D and I went home the next day. Just before I left, the attending doctor wrote me an unrequested prescription for pain of a pulled muscle.(The original reason for the Tylenol)  The medication he gave me was a HEAVY (unnecessarily so) pain killer called Dilated. That was day2,  Saturday.

I took the pain killer less than prescribed. Sunday was uneventful.  I woke Monday morning, knowing my brain was about to shut down. I called a few friends. They all said I wasn’t making any sense. I knew being  alone was not safe at that time,  so I drove to R0-Z’s book store.  He was there and I knew he wasn’t leaving. Ro-Z said later that I was there for five minutes before I started having non-stop seizures. He said I refused to go to the hospital. After 3 hours of me passing out,  falling, twitching and babbling, he called the squad. I was taken to the same hospital as before.  I remember waking up in a shadowy room with no windows and the door closed.  It was very quiet and calm. I thought I had died.

I got out of bed and slipped into a seizure and onto the cold tile floor, hitting my head. This began a series of serious hospital,  medical and ethical violations  One of the first being that the hospital staff made no attempt to contact either if my doctors even though they had been given the information. That  Monday and Tuesday (day 4 and 5 of 10) were the darkest part of donkey ride through hell. I was given no medication and did not sleep a single moment. I had 3- 12 hour bouts of non-stop seizures (status epileptus). My body temperature spiked to boiling and dropped to freezing in fifteen minute cycles.( there was a huge clock on the wall. I watched the second hand tick past every second of my decent into Hell ).   The hospital staff ignored me, except to give me 8 blankets, one for each shivering, teeth chattering request. On Tuesday night all my friends had come to see me at once. (they noted the filthy room and unchanged sheets in a hospital with a great reputation..huge place..I was on the neurology ward..which makes it all worse) I had a seizure that knocked me back to my senses.  No medication for 2 days..no food..no call from Dr. D.  I decided I would check myself out the next day (Wednesday..day 6)  I asked Marsia to pick me up at noon.

Suddenly, Dr. D was notified. She called my room just before I left. I told her they were not giving my me any medication and she said: “I call talk to you this evening”.  And that is the last memory of my rational mind. As soon as I walk in the door of my house..I was in some other world. I did not remember my dogs. I thought we were at Marsia’s place. Absolute confusion spiraled from there..this is where it becomes a dark comedy. This is also when we discovered that my brain does not create the enzymes that cause sleep. For 5 days and 5 nights..not one minute of sleep.

My friends were on a round-the-clock watch on me (God bless them!) and they all describe my behaviors and streams of conversation as; ” hilariously, out there..bizarre, from  some other dimension and entertaining but annoying.”  Apparently, every hour I would find a set of 3 completely unrelated questions and ask them over and over..not remembering the answers or that I had already asked the questions. I was deeply psychotic and from my point of view everything was spiritual, cosmic and eternal. (most of my memory of those days has been reconstructed and revived with the help of my friends and doctors) The day I finally snapped was Friday..day 7. I was having some much needed sex with the usual guy. I think it was the only 20 minutes but I actually slept. All those clenched muscles in my hips (from the seizures)  were relaxing.  I woke up with a big leap over ‘consciousness canyon’. I jumped out of bed and ran to my open window,  leaned out, topless and yelled out to my neighbor and her 2 small children “Did you know time is linear?!”  Mark pulled me out of the window.  It got worse from there..my adrenaline was surging.

I picked up a portrait of my grandfather and asked Mark frantically..”This is my Grandfather! What IS a grandfather?!  That tree by the window..what IS a tree? Why is that bird flying?”   Marked picked me up and tossed me over his shoulder and took me downstairs. He had called Marsia and she was running in as Mark came down the stair case.  Marsia thought I overdosed on something. She ran to my medication box.   At some point someone dressed in my sweats. I was sitting quietly on my back porch speaking only in sign language.  Then, Mark picked me up like a child and took me inside. The paramedics had come for me. I was going to the hospital. I felt like I was being sent to prison. I became passive and silently agreeable.

When I  opened my eyes, I was in the emergency room of that same hospital. I was sunken deeply into a psychotic state…but I remember most everything that passed trough my broken mind at the time. There are about a dozen silly delusions I followed then dropped. Many  fleeting beliefs that I spoke of, passionately and compassionately.  Many VERY funny moments (looking back)..lots of little stories form that little E.R. room.  They eventually put me to sleep..which is what I needed.  Day 8, 9 and 10..were surreal. I woke up in a quiet, shadowy hospital room. There were no beeping machines.  No needles. No technical equipment on the walls. A very pregnant woman was asleep in the bed next to me.  I was certain I had died.  Turns out, I was in a psychiatric hospital unit, pretty close to dead, according to my attending doctor. It’s amazing how much a human brain can take.  The story will be told from my point of view..however strange it was, no matter what I know about those events, now. That telling will be sharply broken with interviews of my friends who helped me through it, noting the humor and annoyances of  my strange perceptions  from their point of view.   I can only shake my head and roll my eyes.

I lived…again.

My life must grow and evolve.  Even scarier, I must grow and evolve.  I want positive change as much as I ever wanted a [...]]]> Growing up and living the way the demon required lead me into decisions and to a life style that is now as fresh as avocado green shag carpet..wall to wall, ’70′s style.

My life must grow and evolve.  Even scarier, I must grow and evolve.  I want positive change as much as I ever wanted a piece of my favorite birthday cake. I’m  antsy, tip-toe dancing with anticipation of what I know..from all memory, is delicious, mouth watering  and worth the wait.

Translated into real life situations, that birthday cake represents the ideal.  I strive for no less.  I am brave and patient…starving for sugar, those white fluffy layers divided with fresh sliced peaches and whipped cream could bring me to my knees…especially when translated to real life situations.  We all have our goals, dreams and responsibilities.

I’m a late bloomer.  Actually, I’m called a survivor…something that blooms despite all the weeds choking it’s roots.

My wonderful therapist would say: “Get off the cross! We need the wood!”  She’s very direct that way.  I feel like I’m 8 years old again. Floating far away from land in the open Pacific with only a life jacket to hold me afloat.  No sign of land. Waiting for an ocean current to push me towards the sand.  To drop the metaphor…I need to reach out and feel a caring hand clasping my uncertain life.

We think..therefore we get confused.  The mind plays  tricks with perception, sometimes with every thought. We; rationalize, demonize, terrorize,  moralize,  sanctify and continually judge the world as it is presented to us. Then, we compare our worlds to the life we really want..and lose that

Blaming innocent friends for the evil illusions of [...]]]> late April early afternoon.

We think..therefore we get confused.  The mind plays  tricks with perception, sometimes with every thought. We; rationalize, demonize, terrorize,  moralize,  sanctify and continually judge the world as it is presented to us. Then, we compare our worlds to the life we really want..and lose that

Blaming innocent friends for the evil illusions of our mistakes..often never realizing it is our own  perception that is misconstrued.  Stubborn and unwilling to compromise,  we are sometimes more comfortable with our known demons than any unchained possibilities.

The rational mind knows we can’t fly…but we can travel by air, float under a parachute or ride the updrafts on artificial wings.  As we are told as children..we can do anything in life.  We are given hope, ambition and a sense of possible purpose to rationalize  putting up with this…often impossible and intolerable world.  My…I have a black attitude today…I’m struggling to stay afloat in my world..reaching for rationalizations.. hoping for resolutions of dreams, wishes and prayers answered with a resounding chorus of angels singing “”YES!! YOU WILL HAVE WHAT YOU DESIRE!!”"   ……………………and we dare to dream.

The sleeping demons got me last night. I don’t see, hear or feel them invade my brain like they did years ago.  Now, at the most, I will have shadowy images of racing dreams..but not today.

Sleep demons retreat before I wake,  leaving only a thick film between my brain (neurology functions) [...]]]> April 19th..sunshine and singing birds.

The sleeping demons got me last night. I don’t see, hear or feel them invade my brain like they did years ago.  Now, at the most, I will have shadowy images of racing dreams..but not today.

Sleep demons retreat before I wake,  leaving only a thick film between my brain (neurology functions) and my mind (rationalizing functions). I ache, head spinning across the keyboard. Light burns my eyes.. as if I’m a vampire shriveling from the sun. I feel undone..unraveled and raw.  My mantra for the next few hours will be: “this will pass..I swear…this WILL pass.”  As it has done, literally thousands of times before.

I turn to my saving vice, caffeine. Thick, pungent espresso with milk..steaming hot, to clear my senses. Sleep demons are the most insidious tormentors. Vanishing as my eyes open to a weak and ravaged body and  creaky thoughts that feel like rusted wheels turning an ancient machine.

But this WILL pass. It always does. Confused, frightened and alone, I bravely face my day knowing the night demons have passed.  If I am careful and mindful of my movements, they will not send the day light minions to harass me.

Words to live by:  Walk swiftly  over broken glass.

The sun rises late in my life.  The rosy fingers of dawn have fully opened and the bright yellow light of day shows a crystal blue sky, hours before I rise..  I’ve survived another night.

We are a small population, us lone walkers.  We face the world with  our demons, alone, as the [...]]]> April 18th Sunday noon

The sun rises late in my life.  The rosy fingers of dawn have fully opened and the bright yellow light of day shows a crystal blue sky, hours before I rise..  I’ve survived another night.

We are a small population, us lone walkers.  We face the world with  our demons, alone, as the rest of the world skips passed us, hand in hand, two by two.  Our heads may drop to watch our sinking hearts but we do not let people see that we are different.

Everyone has friends that others can not see;  That inner voice we seek for council, our conscience that requires constant rationalizations,  even departed loved ones that in our silence we ..know..  are by our sides, trying to be helpful guides.  They all help us navigate this  confusing life.   We all pretend this isn’t true…We want the world to see us as steady, bright-eyed, independent spirits… ready to climb the ladder of obtainment, success and true love to reach the nourishing fruits we see, hanging just beyond reach…believing if we do what is right, Life will give us a boost from time to time.

We all hope our personal demons stay out of the way of our progress.  Who is really in control?  The cosmic river flow (?)…where some sink, others swim, some people easily ride the tide while others crash against the rocks and splatter into smaller drops…and still, we keep going.  Still, we keep hoping for a road sign to mark our paths.  Humans are a remarkable species…capable of outrageous fun and revelry , capable of unspeakable crimes against our own kind. A spirit can be so fragile as to be blown apart by an unaccepting  glare of judgment or raised to the highest peak by a wink of approval.

Yet, for all of our similar differences, simple  intolerance can break a spirit forever.  Acceptance, can raise a soul from the pit of despair and give back life.  WE  are all powerful. We choose and follow Fate.  We, decide how to live with our personal demons.  We are omnipotent unto ourselves.

I was restless the other night. The 3rd or4th time I went back to bed it was nearly dawn. I lay down and with my whole heart I asked the great universe to  “please give me a clear answer about this book  I want to write.  Should I write it or will [...]]]> Journal entry  November 2004

I was restless the other night. The 3rd or4th time I went back to bed it was nearly dawn. I lay down and with my whole heart I asked the great universe to  “please give me a clear answer about this book  I want to write.  Should I write it or will it be a waste of my time and emotion?”

This is what I dreamed:

I was being lead by a single file line of fast running spirits. They were running so fast they looked like smoke.  The one spirit that was closest to me was holding my hand, pulling me quickly through streets and parties, through an open field, a forest, over hills and back to a small town. The running spirits never slowed down. The spirit leading me pulled my hand and encouraged me to keep up.

We went flying through a dark alley turning left then right in the growing  damp fog. Then, the spirits ahead turned a quick corner and flew through an open door. The spirit leading me rushed passed the door then slammed it in my face.

I stood there for a second, perplexed.  Then I banged on the door yelling “Hey! Guys! Let me in!”

The door burst open and a huge snarling green monster jumped out, with Its arms up to look  even bigger. It scared me to shivers and tears. Then,  the monster suddenly shrank down to the form of the spirit that had been pulling me along. My heart was  pounding,  I was  shaking and out of breath.  I yelled with relief   “What did you do that for?”  He yelled back:  “HOW  COULD  YOU  ASK  A  QUESTION  LIKE  THAT?”

I woke up, fully aware of the question I had asked before I went to sleep.

I started outlining the first chapter the next day.

..And suddenly – out of nowhere..BAM!   I’m hit by a truck. Consciously unconscious – I lay on the floor – shut down,  paralyzed- in the cleaning aisle of a discount store.   Alone.  I wake up to pain and confusion. No one has stopped to see if I’m OK– (It must [...]]]> Journal entry may 2007

..And suddenly – out of nowhere..BAM!   I’m hit by a truck. Consciously unconscious – I lay on the floor – shut down,  paralyzed- in the cleaning aisle of a discount store.   Alone.  I wake up to pain and confusion. No one has stopped to see if I’m OK– (It must have only been a few seconds)

That’s OK- in a way. I don’t want to be a spectacle.    Then,  I’m overwhelmed by the solitude of a seizure;

is it Death passing through me – on Its to someone else?

My brain stops.   Can’t remember where I am or why.

I know that I’m alone- and can barely stand.

I have to get home.

I can barely walk – or keep my eyes up and level.

gotta get home gotta get home gotta get home

HOW?  DRIVE?–God, help me!

I get to my car-  Sleep first.

I lay there – half dead in the car  — screaming with all my silent strength:  “Help me! Please! Somebody!  Help!  I NEED HELP!”

no one looked.   no one stopped. no one.

An hour later  I woke up feeling like I’d been hit in the head with a bag of bricks.  Automatic pilot  was engage.  I drove the short distance home.

]]> http://savedforthedemon.com/2010/02/living-alone-with-seizures/feed/ 0 http://savedforthedemon.com/2009/12/the-kindest-of-strangers/ http://savedforthedemon.com/2009/12/the-kindest-of-strangers/#comments Thu, 31 Dec 2009 16:29:40 +0000 Jyllian http://savedforthedemon.com/?p=82 Yesterday was a typical cold and damp December day here in mid-Ohio.  The 28 degree temperature was a warm up from recent days so I layered up my clothing (from long-johns to cozy gloves and a hat) and took my hound dog to the park.

I felt strong and hardy walking through the woods and the [...]]]> Yesterday was a typical cold and damp December day here in mid-Ohio.  The 28 degree temperature was a warm up from recent days so I layered up my clothing (from long-johns to cozy gloves and a hat) and took my hound dog to the park.

I felt strong and hardy walking through the woods and the open fields, while Vinnie Van Gogh ran around chasing the elusive squirrels.  I walked with a muscle-tight stride for some added exercise. We were all over the park for about an hour. When I got back in the car I realized I had worked up quiet a sweat in the icy air…which is against my ‘anti-seizure’ rules.. but I felt great.

On the way home, I had planned a stop at the Pattycake Vegan Bakery to by some treats for my vegan friend, Lydia.  I walked into the shop and the warm, sweet fragrance of sugar and spices caressed  my senses. A moment later, I opened my eyes and found myself sitting at the table in the bakery. Two kind, soft spoken women were behind the counter watching me. I had no idea where I was or why.   “You’ve just had a seizure” one of the girls said calmly, “You were out for about ten seconds.”    That was my ’10 minute-warning-bell’  for an approaching flurry of much harsher seizures.  I stood up to get to my car and get home before the next round got me but the to lovely ladies, Jennie and Amanda were not going to let me leave the store until they were SURE I was stable enough to drive.  One of them brought me a glass of much needed water. By the time I finished the water and felt better, my ‘ten-minute-warning’ had passed.  I woke up, again, at the table in the bakery.

From that point this is what I remember:  I was in a bakery and not sure why. I remember Jennie and Amanda questioning me about my condition. I don’t remember answering.  One of them wanted to call ‘the squad’. I remember saying “NO!, PLEASE! DON’T CALL THEM! THEY CAN’T HELP!”  (which is true. Sirens, commotion, the battering  questions and ultimately the hospital only makes a standard round of seizures worse).  I remember waking up again on the floor.  I was concerned about Vinnie, sitting in my car.  I remember waking up again with one of the girls picking me up off the floor. I remember being a passenger in my car. I remember waking up on my front porch with Jennie and Amanda helping me up.  I woke up 2 more times inside my apartment with Amanda trying to call my friends  (I must have been conscious on some level, she had names and phone numbers).  I remember crawling to my couch..unable to walk (muscle spasms) crying from embarrassment.  Jennie helped me up to the couch and Amanda brought me more water.  Those 2 small  necessities  are overwhelmingly impossible for me when I am alone after seizures.

Jennie and Amanda did not know me. They had no obligation to see to my safety..much less..my comfort. Yet, they insisted.  They were angels making sure no harm came to me.  They stayed with me long enough to make sure I was stable and that at least one of my friends knew what had happened.  I will never forget their kindness and unconditional care.  I hope the grand Universe brings them each a thousand unexpected joys.  Jennie and Amanda are uncommon jewels in our Cosmic River.  I can not thank them enough.

The ancient Greeks were my kind of people; [...]]]> The ancient Greeks believed that anyone struck with a seizure was being taken over by a God and given special knowledge.  Yeah, those were the days…Heroes and monsters. A  God for the sea and one for the sun.  Anything unexplainable was caused by a meddling God or Goddess.

The ancient Greeks were my kind of people; philosophical and hedonistic, dancing in celebration of a God one minute and sleeping with one disguised as a swan the next.  As for the special knowledge passed on through seizures … I have seen MANY things during those..interludes.

I once took a Greek Mythology class at OSU. The teacher, Laura, was young and bubbly..SO excited to be sharing her knowledge of the ancient Greek world.  To her, their myths were truths;  grand and logical. The main God was Zeus, the ominous one. The other Gods were like managers, each with their specific gifts and duties. In  her opening lecture she sited (among other examples) the way the Greeks explained seizures: They believed that the one stricken with a seizure was being given special knowledge by the Gods.  Epileptics were revered as keepers of  special insight to the worlds of the Gods…and their dramatic gossip.

After every first class,  I felt it was important to  tell the professors of my condition. If one of the florescent lights was flickering, I was at risk of a seizure.   When I told Laura that I have epilepsy, she spun around with a big smile and  said, genuinely  excitedly,  “Wow! How fortunate for you!”  I was speechless.  In that one moment my entire perspective on every other moment in my life was changed forever.  Perhaps I was an oracle to Apollo or a favorite maiden of  Bacchus. It doesn’t matter…she brought whimsy and light back into my memories.