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I came across a scrap of paper today at work, on which I had scrawled several ideas for essays/blogs about brain surgery. 

  • musical intelligence — I have tackled this one
  • the whomping stick (about my cane) — ditto
  • “throwing up” on people (telling them about my surgery)
  • PT and OT
  • epilepsy vs. alcoholism

That last one I’ve never addressed in any form on this site.  I’ve tried to explain it to people, but without much success.  Here’s the idea: in alcoholism, a person will forever remain an alcoholic, even after years of sobriety.  Once an alcoholic, always an alcoholic, because he could go back so easily, slip up so easily, and send himself back down into addiction.

As for epilepsy, I recall Dr. Zager or Dr. Hart saying (I remember it so well, I can’t recall which doctor actually said it) that once the brain has learned to seize, there is always a risk that it will seize again.  The more time the passes seizure-free, the lower the risk of another seizure, the longer one is likely to stay seizure-free, but there remains a chance, a possibility of relapse into a seizure.

So here’s the connection: once the brain has learned that specific “behavior” — be it addiction to alcohol, or seizures — there is always a change it may relapse, especially if one does not avoid triggers, like alcohol, sleep deprivation, caffeine, and dehydration — for epilepsy, or well, alcohol, in the case of alcoholism.

And my question has been, if I had epilepsy once (or for 8 years), will I have epilepsy for the rest of my life?  Does my insurance company think so?  Do I?  Do my doctors?  Am I “cured” of the underlying physiology of the AVM — all indications say yes — yet do I still carry the label of epilepsy?  In the age of people- first language, I can certainly escape the designation of “epileptic”, but can I so easily leave behind the diagnosis, the condition, the lingering possibility of a seizure, and epilepsy itself?

Part I:  From the Beginning.

I originally started this blog to find a space to vent about work and our impending home-ownership travails.  I had also been guest-blogging on Mr.Apron’s site and needed to find my own URL.  Now that the school-year has ended, and I have two solid weeks of office time with no children before we gear back up for our short summer session, I’d like to embark on a new journey with you. 

Back on June 22, 2004, exactly five years ago today, I underwent brain surgery at the Hospital of the University of Pennsylvania to correct a congenital defect in the arteries and veins in my brain.  Today I celebrate my fifth “Brainaversary.”  I have always wanted to write about this experience.  Let me correct that – I have always needed to write about this experience.  Heading into the hospital, I swore to myself I’d remember and write down each detail, so I could never forget.  Well, as anyone who has ever had an extended hospital stay can tell you, time just morphs into this indistinct glob of hours and days and cranial nerve tests and orientation tests and blood tests and horrid meals.  Due to my complications, I could not write down my thoughts as they were occurring.  Mr. Apron, who was then “only” my boyfriend, kept my friends and family updated through e-mails on his infrequent breaks from my bedside.  There was no Twitter, and blogs were just in their infancy, or I might have been able to create a blog like Katie did here: http://overflowingbrain.blogspot.com .  Alas; I was cut open too early for real-time blogging or twittering, but not too late to fill in my story now. 

 I was always the healthy child.  I never had ear infections, never took any days sick.  I had perfect attendance for 5 years running in elementary school, racking up a pile of those cheesy cardboard certificates year after year.  While my brother suffered to find a solution to his eczema, and my family struggled to keep his asthma and allergies under control, I was healthy.  When my sister needed glasses in 3rd grade and developed a milder form of asthma, I remained healthy.  That was my role in my family.  No cavities, no broken bones (yet), no cause for alarm. 

 I can’t recall the first seizure, but I remember one of my earliest ones, when they were still small enough to hide in public.  I was eating lunch with friends out on the softball field during one of the last days of 9th grade.  My tongue began to twitch, and I had to put down my bagel.  I’d noticed some beginnings of a pattern to when these tongue spasms started.  It was often when I’d neglected to pack a drink with my lunch, or neglected to drink it.  But these early spasms were so small, so brief, I only had to close my mouth, stop eating for a while, and then I could return to lunch with my friends.  Another lunchtime, this time in the cafeteria, I warned my friends I wouldn’t be able to talk for a minute – no further explanation – and I would be okay.  My friend Moira asked me to show her, so I opened my mouth.  They were greeted by a writhing, pulsing tongue muscle.  “Gross! Put that away!”  And I did.  I never showed anyone again. 

 Throughout high school, and college, when I’d feel a tongue spasm coming on, I’d run to the nearest restroom.  It would only be literally a minute, and then my tongue would stop writhing.  I’d clear my throat, do some tongue calisthenics to make sure I had control over it again, and re-enter society.  I was very fortunate I had warning.  I could feel this slight tickle in the back of my throat, which would make me swallow hard a couple of times, and I’d have ample time to run away.  I’m hesitant to call my warning signs an “aura”, which is what many people with epilepsy experience before a seizure.  It usually manifests as a perception of a light, a smell, or strange thoughts.  Mine, I believe, was more physiological.  Nevertheless, it allowed me a short getaway time. 

 I’ve run away from theatre rehearsals, bassoon lessons, shopping excursions, lunch times, and many social situations.  In the rare times I’d get “caught” with no known bathroom to run to, I’d tell my companions, “In a short time I won’t be able to talk for about a minute. I’ll be okay.”  No one really freaked out, because I could hide it in the beginning.  I even hid it from my own mother when we were at Bread & Circus.  As time went on, the spasms got bigger.  What I can safely assume was happening in my brain was that my AVM was getting bigger, though no one knew it yet.  What had started as my tongue’s twitching evolved into a focal motor seizure which “took” the left half of my face as well.  The left corner of my mouth curled up uncontrollably and my cheek participated, too.  Yet I still told no one.  Not any of my roommates, not my college boyfriend of 18 months, not anyone in my family.  People today marvel about how I kept my secret.  Roommates ask me how they could have lived with me for a year and never noticed my stealth runs to the bathroom. 

One time, as I was having a physical from a new doctor in preparation for my new job teaching preschool, I mentioned my tongue spasm as an aside.  Here I had taken this huge leap, preparing myself to be questioned and prodded and taken down the road to “follow-up”.  It took me a lot of gumption to even mention it to this doctor.  What did he say?  He dismissed it, telling me he could put me on some drug just to stop it, but that it was nothing.  So I ignored it again. 

Another time, I was visiting with a friend in Chinatown, a medical school-bound friend, incidentally.  I was trapped between her and the Peking ducks in the windows when I felt the spasm coming on.  By this point in time, Christmas 2002, it had become too large to hide in my mouth, and she saw.  She saw, and she knew just as I believe I knew, that something was really wrong with me.  “You know,” she said when it was all over, “you should really see a neurologist about that.”  “I know,” I replied, because I think I really did. 

Not until my future husband saw it did I begin to take action.  This was a man I had moved across the state to be with.  A man for whom I had sought out jobs in his area code, sought out apartments in his county.  A man who had captivated me from 312 miles away over jdate. 

(To be continued)