The Fine Art of Learning to Live With (and without) Epilepsy

All the art of living lies in a fine mingling of letting go and holding on.
-- Havelock Ellis
 
 
This morning on the local news, there was a story about a 13 year old boy who had a seizure while on the bus to school.   The bus driver reported that he seemed fine when he got on.  One of the other students said "He told me once he gets a funny feeling before it happens, but he didn't warn anyone.  He was just being real quiet and then he fell over."

I had a real mix of feelings when I heard this: sympathy, concern & even a little anger.  While it must be stressful for everyone involved, my heart sank for this little guy.  I have a pretty good idea of what that boy was thinking in the minutes before that seizure, and it was probably a combination of denial, desperation, & panic; I just pray he's okay.  While I've never made a secret of having epilepsy, there are some things you keep within, hidden from friends and family & even yourself.  My last grand-mal seizure was April 20, 1989.  And it's only recently that I've been learning to let go.

How it Began: July 23, 1974 

I remember the date, as it was my dad's birthday; it also happened to be the day my cat had ingested some poison & died, which had me crying nonstop all day.  Later that evening as things settled down, my mom (in an effort to make me feel better) asked me to ride with her to Grandma Morris' house to drop off some metal buckets (for berry picking). 

When we arrived, it was dark and there were no lights on inside.  Mom asked me to take the buckets up the driveway and leave them on the front porch, while she kept the car running.

 

Down the hill, the main road & driveway leading up to Grandma's house 
 
I can still recall (quite vividly) walking up that driveway in the moonlight, feeling as if I was being drawn into a murky dream.  By the time I got to the front door, I had no idea where I was or what I was doing.  I stood there, looking about & trying to get my bearings.  Mom shouted from the car:  "Doug, just set the buckets down!  Come on honey!"

I understood what she was saying, but I couldn't recognize her voice.  I began walking towards the car before blacking out.

After that, all I remember is awakening in a hospital bed, with a nurse stroking my hand.  My body felt sore all over, but my head & hands throbbed with real pain.  (I had no memory of what occurred.)  I could see both Mom & Dad outside the doorway, my mom crying and saying "I just want to know, is it epilepsy?"  and the doctor was murmuring "Mrs.Morris, we don't know yet..."   My poor mom; I later learned that I had made it into the car before my first grand mal seizure.  Alone on that country road, all she could do was sit there & wait until I stopped convulsing before driving us to the hospital.

Did you know…

It's not as common as you think.  Odds that you'll have a seizure at some time in your life?  1 in 10.  Odds that it will develop into epilepsy? 1 in 200.

There are primarily 2 types of seizures:  grand mal (which involves loss of consciousness, writhing on the floor & clenching of the jaw); and petit mal, usually remaining awake but in a 'dozing' state, where you just sit motionless or make small repeated hand gestures.  I've had both--but grand mal was my specialty.

In 7 out of 10 cases, the reason cannot be found.  While seizure activity can be recorded via brainwaves (by performing an EEG--a painless procedure), it's difficult to determine the origin.  (If you have a parent or grandparent that suffered from it, heredity is considered a likely cause.)

Chapter 2: The Verdict is in
 
In the weeks that followed, Mom worried endlessly as any good parent would--but it seemed she had a 'better reason' than most.  As we'd always known, her father (Arol Belford, the grandfather we never knew) had been diagnosed with epilepsy & died at an early age when Mom was just a toddler, from the stress it put on his heart.

My mom’s dad, Arol Belford, the 1940s
 
It was not quite a month later when I had my next one; and it was shortly after this when the doctors completed their tests and confirmed I had a 'seizure disorder'.  Mom said "So it's not epilepsy?"  The doctor said "Well, yes it is.  But we prefer not to use that term because of the negative stigma."  

(I will never forget him saying that; I was 12 years old & didn't understand what he meant.  I soon would.)   But as time went by, I considered myself pretty lucky; mine were labeled "severe but infrequent".  I could go for a couple months without one occurring.

Did you know…

Until 1970, it was illegal in 10 states for epileptics to marry; 20 states had the right to have you sterilized.  Employers could refuse to hire you without persecution, and 75% of US companies said they would not hire someone with epilepsy.

Currently, only 3 states require you to be seizure-free for a specified period of time before you can get your drivers license; Pennsylvania is one of them & I wasn't permitted until I was 32.  Shouldn't THIS be a Federal law?  Who wants to be on the road with an epileptic?  I don't! 

Anti-seizure medication only halts seizures completely in 50% of the people taking it.  (Everytime I had one, my mom accused me of forgetting or even skipping doses; I insisted I didn't, but she didn't believe me.) 
 
Chapter 3:  Shame & Guilt--Coping with Family, the World & Yourself
 

I realize that I wasn't the only one affected by this.  I had brothers & sisters, and God knows what it did to my parents.  But it's difficult to describe the constant state of fear you're in when you're a 13 year old. 

At a time when you're desperate to fit in, embarrassed to be seen with last years shoes, picked on daily by bullies, worried that the erection you suddenly got in English won't disappear before the bell rings--it all pales in comparison to the white-knuckled fear that you'll collapse in the hall between classes & prove to the world that yes, you are indeed a freak. 
 
And that's how you feel, everyday, year in & year out--like a damn freak. 
 
I confess that in the very beginning, I was kind of intrigued; it almost made me feel "special".  But as time went by, and I had a third, a fourth, a fifth--and usually ending up with bruises, scrapes & burns (trust me, you will get severe friction burns on certain types of flooring) I grew increasingly tired of it, fearful, depressed.  My mom (scared & on edge) often lashed out at me afterwards.  My dad became more & more distant; he was afraid of "setting me off". 

"Epileptic", a wonderful graphic novel about a 13 year old boy who develops epilepsy, and how it affects his relationship with his family; after so many years, I felt like someone finally understood. 


The thing is, I always tried to put on a show that I was taking it all in stride; but inside, I seethed with resentment, anger, & jealousy towards my brothers & sisters.  I resented that they didn't have to carry this around inside them too; I couldn't let myself get too tired, or too hot, or too excited, or too upset--all sure seizure inducers.   I felt like I had to wear a "That's our Doug!" mask that could never come off--there were too many bad things waiting to get out.   Does this even make any sense? 

Making a Spectacle of Oneself...

Unfortunately, seizures have a mind of their own (pun intended) and you don't have the luxury of choosing the locale.  Here are some public places I got to demonstrate my 'gift':

Shop n' Save--I collapsed into an end-cap display of pina colada mix, and the guy behind the meat counter rushed out & stuck the knuckle of his first finger in my mouth "to keep me from biting off my tongue".  I bit thru his knuckle instead, and woke up in an ambulance with him lying beside me.  His name was Gary aka “Tink” & I'll never forget his bravery.  (His finger was repaired, thank goodness.)  We exchanged Christmas cards for many years after that.

H&R Block--I was in college, we all got complimentary certificates to get our taxes done for free.   When the tax preparer handed me the pen to sign my tax statement...I collapsed on top of her desk instead.

My first formal dance.  Was it the lights, the loud music, the excitement?  Probably all of the above.   I woke up and saw my algebra teacher standing over me, dressed as a paramedic--I thought I was hallucinating.  (I wasn't; that was his 'evening job'.)   Try explaining THIS the following Monday at school!

Epilogue: Peace at last

Like I said at the top--my last grand mal was on April 20, 1989.  And until this writing, I've never told a single person about it.  It was a late Friday night, I was alone in the laundromat at my apartment complex in Shaler.  I was watching the dryer’s glass “porthole” turn with my clothes when I felt the blackness stealing over me… 2-3 hours later, I awoke on the linoleum floor with a rotten headache. 

But when I realized it was the first time I had one alone, and not awakened to someone else's concerned look or anguish or dealing with any embarrassment... I could just keep it to myself for once.

There's a lot I DIDN'T cover here—the “aura", an amnesia-like precursor to the actual seizure), the painful after-effects... so why did they stop?  Doctors don't have an answer for that either.  In Nov 2001, I had an EEG done for the first time in 11 years--I thought for sure it would show everything as normal.

But the doctors said the same 'cluster' of activity was still there.  (In fact, they were shocked when I reported I hadn't had one in over 10 years.)

To be honest, I still deal with some brief 'relapses' on occasion.  An 'icy burn' in the back of my head that once raged like a fire before a seizure; and on some occasions, I've come close to a full-fledged aura.  But unlike the past, I can stop what I'm doing & 'push it down'.  And there's not a SINGLE morning I wake up & don't feel very grateful about that. 

(And of course, I'll always feel grateful to my family who dealt with it as best they could.  Both my falls & victories were theirs too, it seemed.)  

When I told a friend I was going to write about this, she said "Why?  Aren't you worried people will read it & think differently of you?  Aren't you afraid you'll jinx things?"   No...I'm no longer afraid.