an illness narrative

I remember my mother’s face peering down at me.  My hair is matted down on my left side, and my nose is full of something that stings.  My throat is dry and my mouth feels crusty.  I am wet.  A hand is sliding down the left side of my face.  A furry moistened hand.  I open my eyes and I am in a tub.  It is very bright in the bathroom and I squint as I look around at the yellow tiles.  I am seven years old and I have no idea what is going on.  The water is warm but I am shivering.  My dad has one arm behind my back supporting me in the tub, as he kneels beside me the light is reflecting off his glasses and I can’t make out his eyes, I hear him sigh and his grasp tightens as he sees me looking up at him.  My mom is kneeling beside him and rubbing the side of my face with a washcloth and looking very worried.  It is at this point that I smell it.  The unmistakable vomit smell.  I feel the side of my head with my hand, I am covered in it.  The stinging in my nose and throat tell me that it is my vomit.  I look over at the door to the bathroom and see my older brother peering in at me.  We shared a room and I guess he must’ve woke up in all the commotion.  This has never happened to him before.  Nor has it ever happened to my older sister.  My mom and my dad never had this problem.  I am different and alone and no one knows why. 

My brother and sister told me, that one time when I was four, I had thrown up all over the car during a family road trip.  It was the three of us in the back seat of a Pontiac sedan and there was no escaping the fruit loops I had eaten for breakfast.  They said I had been asleep, and then had just started vomiting everywhere.  I know now that this may have been the first instance of my seizures.  I had nocturnal epilepsy which I was told basically meant that certain nights, for no reason and without warning, I would lay down to sleep and right before I hit that level of REM sleep, something in my brain would go haywire, I would have a seizure, vomit, and pass out in my own sick.  Luckily, for me, not for him, I shared a room with my older brother growing up.  So, he would hear me shaking and moaning, wake up and run and get my parents, so that they could make sure I didn’t asphyxiate.  Needless to say I wasn’t allowed to go to many sleepovers.  I had an overprotective mom who thought my brother, who was four years older than me, and my sister, who was seven years older than me, were all the friends I needed.       

“Joseph, Joseph, Joseph…”

My eyelid is peeled back, and a fire burns it.  Uniformed men are thumping around the tulip wallpaper.  Hands in my armpits tickle as I am lifted.  There is a sharp prick in my hand as a belt is tightening around my chest.

“Hey honey?”  My moms voice… Where am I?  A big busy room.  Few man in white coats, few people in green matching outfits.  Everyone is talking.  There are curtains, and hallways, and machines.   Hospital.  A man in a white coat says that I had a… ‘Grand Mal’.  They are all staring at me, but not talking to me.  Their eyes look sad.  The other’s leave.  My mom and I look at each other.  There is a thin curtain next to the bed I am in.  My mom squeezes my hand.  “You had another seizure and you wouldn’t wake up.”  My face is hot and I feel different and alien and fragile.  My mom always said that everyone who goes to Johnston Willis hospital dies.  I look around.  My mom tells me I’ll be fine.  “Try to get some sleep”, she says.  I close my eyes.  My eyes open to a loud bang.  The doors at the end of the hall have burst open.  A black haired man in a white suit is strapped to a table with people, dressed in green from head to foot, rushing him in.  They push the table up to a wall and pull a curtain around him.  I can just see silhouettes.  His head has a gash in it and the shoulders of his suit have turned pink.  I close my eyes again as things start to calm down.  My eyes open, my mom is standing up looking worried.  There are loud yells.  One of the nurses comes out from behind a curtain nearby with her hand over her face and blood gushing from her nose.   Doctors come running and grab her and rush her to a bed.  The pink and white suited man creeps out from behind the curtain staggering as if drunk.  His pants around his ankles, he turns to face my mother and I.  He stares at us and there is nothing behind those eyes.  My mom moves between him and me, and puts her back to me.  I have to lean over to peer around my mom.  He pulls his pants up as he sways around with a stupid grin on his face.  My mom turns to me and tells me to try to get some sleep.  She keeps looking from the man, to the hospital staff huddled around the nurse, and then back to me.  It is bright and loud and strange, I know it is night but in here it is as busy and bright as school during recess.  Two police officers and a doctor approach the man in the suit, he struggles as they get him back behind the curtain.  A new nurse walks towards the group with a needle.  Yet another nurse comes up to us and says.  “Your room is not quite ready yet, but I think if we move ya’ll a little ways down the hallway he may get some sleep.”  “I’m not tired.” 

I wasn’t, I was afraid to go to sleep.  Afraid to go to sleep and have another seizure.  Afraid to go to sleep and miss whatever mischief the man in the white suit was going to get into.  Afraid to go to sleep and leave my mom alone with her thoughts, and her hatred of hospitals.  I was afraid.  Over the next few days I spent in the hospital, I took all the tests.  The MRI, the EEG, and others.  I remember thinking the MRI was nowhere near as cramped or as loud as everyone said it was(although now in hindsight I realize I was a tiny kid, and was too fascinated to be annoyed).  During the EEG they glue things to your head that somehow read brain activity.  They gave me legos to play with while they were running this test and they asked me to please not grit my teeth.  Immediately I gritted my teeth to see what would happen, as soon as I did it, it made the machine jump all over the place and they said they had to start over.  I thought it was funny, but my mom told me to cut it out.  Most of my hospital visit was spent watching cable and flirting with the night nurses.  For some reason they were all cuter than the day nurses, and more willing to laugh.  At the end of all these tests and all this time, my parents and I were told that, the cause of my Epilepsy was: uncertain, the possibility of it happening again: uncertain, the likelihood of me growing out of it without medication: probable, but Uncertain.  Gee Docs what a relief?

I am twelve years old and it has been over a year since my last episode.  I am allowed to go camping with my brother and dad now, and I am allowed to stay the night at my friend Chris’s house.  I am nervous all the time.  I have now read about people like jimmy Hendrix and others who died of asphyxiating on their own vomit.  Sure this was usually drug induced, but I am convinced that one day I won’t wake up.  I bite my nails to the point where they start bleeding.  At school they tell me that I may have a learning disability.  That I have a high verbal IQ, but that I am a slow reader and may be due some ‘accommodations’.  I hate this.  My brother and sister are both top of their class.  Again I am different and alone and alien and fragile.  I begin to twirl my hair during class, and when I am doing my homework.  My friends and I spend most of our time playing Dungeons and Dragons after school, and I twirl my hair while I do that too.  I begin to twirl my hair at night as well, unable to go to sleep.  Either out of fear of seizures, or fear of not being a good student, or the fear that the friends and the whole little life that I had going could come crashing down at any moment because I might just asphyxiate in my sleep one night.  I was a very stressed out twelve year old.

The hair twirling, turned into hair- pulling, which turned into a bald spot.  Yes, I was the only kid at Midlothian Middle School with male pattern baldness.  It was alright until people started to notice on the bus.  My mom started yelling at me about twirling my hair, not realizing what was really going on.  My grades began to get worse and worse because I couldn’t concentrate.  Who could concentrate when everything seemed so awful and strange.  And what was the point in concentrating if it all could end at any second, and if some standardized test already lumped me in with people who were incapable of learning.  I was trapped in a circle.  I was scared, sad, angry, and anxious, so I bit my nails and twirled my hair.  Which in turn made me scared, sad, angry, and anxious.  In other words I was a very normal tween.  Here was another disease that had no clear cause, cure, symptoms, or warning signs.  When I finally expressed all this to my mother, she looked up at me over a glass of wine and said derisively, “What do you want to go see a therapist?”  From then on I shut up.  I did grow out of the hair pulling, and my hair grew back.  Do I still bite my nails?  Yes.  Do I still have fits of panic, and bouts of depression? Yes.  There are two lighter notes to this section of this illness narrative, 1) I found out in highschool that in middle school they had read my test scores wrong and that I probably didn’t have a learning disability, Gee thanks Docs.  2) As I write this I am twenty-eight years old and I have thick hair with no bald spot what’ so’ ever.

It is September 12th, 2001 and I am very depressed.  I am sixteen years old and something happened yesterday that I don’t quite understand, but I can’t stop thinking about it.  I was in school when it happened and watched the second plane hit from a television in my history class.  After lunch I had my theater class, the place where I felt most comfortable and our teacher told us to do whatever we wanted and if we needed to talk she was there.  I sat there talking with some friends, I was angry, sad, and anxious. Over the next few weeks, the news kept showing more death and sad stories.  Tragic stories of heroism and disbelief.  I begin to think that the world is scary and hateful and ugly.  I wonder again what is the point if it can all come crashing down.  I spend the next year and a half floating through high school pretty much only putting effort into theater.  Performing was finally something I found that helped.  For some strange reason getting up in front of people and feeling that fear, made me happy.  And made me forget all that other fear.  Performing made me happy, confident, and comfortable.  I was living in a world that seemed to me, very temporary and hateful, and scary.  But being on stage there were moments where you had the butterflies in your stomach, but you overcame them.  It felt like there was no hurdle to high when I was performing.  If I could stand in front of a full auditorium and say whatever I wanted, then maybe none of this anxiety mattered.  Maybe I wasn’t going to asphyxiate in my sleep, maybe I was going to be alright.        

I am older now.  I have good friends, and I am working on being happy, rather than drowning my anxiety and depression.  The fact is it could all end tomorrow, and that is the point.  That is why you have to keep trying, that is why the sick have to get well.