Thursday, January 26, 2012

A Tough One to Write: Epilepsy

When I was in first grade, I was diagnosed with petit mal epilepsy.  I have no real idea what was said to my parents or how they were told to handle it.  I only know what it felt  like when an episode was about to come on, and I never quite understood what was happening.
The first time it happened, we were living on Woodlawn Street, and I was going to school.  I was in first grade.  Those were the days when kids lived in the same neighborhood where the school was located and no one thought much about a really young child walking to school alone.  It was safe.  We were even allowed to have adventures on our own.  No one worried about kids being abducted or sexually abused, though I'm sure it was going on (ironically, in churches, where we were supposed to be super safe!). 
As I was walking down the street that morning with my Roy Rogers/Dale Evans lunchbox and my shiny new black patent leather shoes (I always remember my shoes -- guess it's because I was always looking down), I saw what I thought was a monster in the window of the house at the bottom of Garland Street.  The face looked like one of those horrendous rubber masks, the kind that fits over your whole head and transforms you into the creature from the black lagoon or an exaaggerated version of a dead president.  I'm sure that the image of that monster was just symptomatic of the way the first epileptic episode came on, but throughout the rest of my life, I've had nightmares about that house and that face.
The next thing I remember is picking myself up off the sidewalk, feeling really shaky and unsure of where I was.  I stood there for a few moments, my lunchbox open on the ground, its ingredients spilled out, the sandwich my mother had made squished under the matching Rogers/Evans thermos.  I packed up the box, and not knowing what else to do, continued to school.
Now that I think about it as an adult, something must have happened that day at school to make my teacher suspect there was something wrong.  She notified my mother of my condition, and after that, there was a series of visits to the doctor, then to the hospital, and that went on for years.  Eventually, I ended up at the Children's Hospital in Boston with a specialist.  Though my mother told me how famous the doctor was, I had no idea who she was.  I'm sure my parents were much more impressed than I was that the woman putting wires into the tablespoon-sized wads of gunk she spread onto my scalp was Tenley Albright, the 1956 Olympic champion figure skater. 
Dr. Albright and I sat in her office many times throughout the next five or six years.  She asked me about my parents, made me draw pictures (and depending on how I felt that day, sometimes they were happy scenes and sometimes they were not), and gave me what felt like hundreds of EEGs.  Every time I had one, the gunk they attached the electrodes to was never completely washed out of my hair.  It would dry hard as cement and ended up taking chunks of my hair with it when my mother and I tried to pick it off my scalp.  I think that's why my hair went from being waist-length to chin-length by the time I was in fourth grade.
My mother described my episodes as "trance-like."  She said that I would stare straight ahead, unblinking, unseeing, for what seemed like five or ten minutes at a time.  I remember those times as being deep in thought, away from whatever was happening in front of me, and focused on something deep inside.  Sort of like daydreaming.  But there were other times that were more scary -- like the face in the window. 
When we lived in the projects, my bedroom was on the second floor, and one day I stood at the top of the stairs, ready to walk down, when one of the epileptic spells hit.  My mouth went dry, what felt like little electrical shocks ran through my body, then everything went black.  I had tumbled all the way down the stairs to the bottom, and when I focused again, all I could hear was my mother's voice.  I thought she was angry with me.  Her voice, loud and shrill, made me nervous.  Scared.  I tried to stand up, but my legs wouldn't support me.  Every time I opened my eyes, things would go black around the edges again, and my face felt prickly like I'd run into a rose bush.
That type of event happened at school several times, and I could always tell when it was going to occur.  Then Dr. Albright put me on some kind of medication (I later learned was Phenobarbital) and all I wanted to do was to sleep.  The teachers started complaining to my mother that I daydreamed all the time.  It became evident that when I started "daydreaming," it was best if I could get up and move around.  No one knew that I was smart enough to realize that it meant I could get away with doing things the other kids couldn't.  In the fifth grade, I had special "permission" to get up and leave the room whenever I felt like it.  I started venturing further and further from the classroom (our room was on the second floor -- the older you got, the higher you actually went in the building).  Soon, I found myself in the basement of the building where I often took violin lessons.  The basement was our bomb shelter, with a glossy, painted cement floor, and wide open rooms we used as a gym during rainy or snowy days, but during regular times, the place was empty. 
When I went down there, it was quiet, and my imagination roamed freely.  I danced among the stanchion poles that held up the rest of the school, pretending to be Audrey Hepburn or Grace Kelly.  I wanted to be a ballerina, wanted to waltz in one of those flowing ball gowns from the movies, and I could when I was down there.  No one bothered me.  No one even knew I was there.
But soon Mr. Sansone, my teacher, figured out that I was gone for longer and longer periods of time, and he must have said something to my mother because my permission to leave the classroom was curtailed.  About that time, the episodes of epilepsy were also waning.  Surprisingly, I grew out of the "disease" about the same time I "became a woman," and by the time I left the projects, I hadn't had an episode in quite a while.  I couldn't have been happier not to have the horrible EEG tests anymore, but when I became old enough to take my driver's license test, the disease reared its head again, and I had to go back to the doctor's to get ok'd to drive.
Many years later, I heard Caesar was an epileptic, as was Napolean.  Somehow, that made it cool.  But my younger cousin, Ernie, was also epileptic, and his grande mal seizures were much more scary than my petit mal ones.  The disease was no joke, I realized.  Nothing about it was cool.

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