Sunday, November 11, 2012

What Epilepsy Means to Me: Leslie (Part One)

The people I’ve met through these interviews have been nothing short of inspirational and amazing. 

Leslie is no different.

Leslie was so candid in her interview I have decided to run her interview in two parts. It really needs more than one read to digest.

Leslie has a spirit of strength and tenacity but you don’t need me to tell you that.  Her words speak for themselves so let's get to it!

(Part Two will run tomorrow so, yes, that’s kind of cheating as far as my promise of one interview a day. That’s okay; Leslie is worth it!).

 Robert’s Sister:  When were you first diagnosed with epilepsy?  Was it a lengthy process to get diagnosed?
Leslie and her daughter
I was first diagnosed way back in 1974, at the age of seventeen, after having my first complex partial (what was then called a "temporal lobe with hallucinations") seizure.
I collapsed at my parents’ home, fortunately after arriving home from school. It still frightens me to think of what would have happened had I been at school, on a staircase. Surrounded by others or out on the street. I might have died.
As it was, it was a terribly frightening experience. I was in my parents’ dining room, when I saw a red, lit tree. No matter where I looked, there it was. Of course, I was hallucinating. But I didn't know it back then. I was also overcome with that terrible "indescribable" feeling something awful was about to happen. I fled from room to room, trying to escape the feeling, but couldn't. And no matter where I went, there was that tree. My mother followed me from room to room. I lost the ability to speak, but I could remember her yelling, "Leslie, what is happening?" over and over.
That was the last thing I remember. According to my mother, I walked back into the dining room, sat down at the table, and passed out. She helped me down to the floor and called 911. I came to several times to find a firefighter (paramedics had not begun working in our area yet), dressed in turnout gear, standing over me, holding an oxygen mask, repeating over and over, "you're gonna be all right, I'm gonna take good care of you, everything is all right." Somehow, I knew if he said I was going to be okay, it was true.
And that started my lifelong love of first responders. :-)
The ambulance took me two blocks to my pediatrician’s office where, since I had hallucinated, they assumed I had taken drugs. I was still drifting in and out of consciousness, but I clearly remember my mother out in the hall yelling, "No! Of my three kids, I know for sure Leslie would NOT use drugs!" I laughed to myself, thinking, "Mom, they probably all say that."
Then, I went to the hospital, where I had a blood draw (clean), x-rays, a primitive scan where they taped my head to a wall! And then an interview by a pediatric neurologist. He asked me, very casually, "What is your experience with street drugs?" and I responded, honestly, "What are street drugs?" He smiled and said, "That answered my question.”
He then diagnosed me accurately. I was lucky in that respect.
Robert’s Sister:  How did you feel when you were diagnosed?
I was numb emotionally, because I had been yanked from my life into the whirlwind of a hospital setting, and to be honest, many of the staff thought I'd been on drugs or was faking. I'd like to add that I still have this experience, 38 years later, which is why it's VITAL that the community at large, and the medical community in particular, be educated about seizures. The most common type of seizure is NOT convulsive (tonic clonic or what used to be called "grand mal"). The most common type is complex and simple partial seizures, affecting mostly the temporal lobe. In my case, it also affects the occipital lobe, which is why I hallucinate. Many of these seizure mimic drunkenness, drug use, mental illness, etc., because they occur in the temporal lobe – the part of the brain where emotions occur.
In any event, I was given no information on epilepsy, what having epilepsy meant, or how my life was about to change. This was before the Internet. I was just a teen and I just thought I'd go home and resume my life. I was wrong.
Robert’s Sister:  Did your family treat you differently after the diagnosis?  If so, how?  
Not really. Like me, they were in complete shock, there was no information on seizures available, and they just wanted everything to go back to "normal." So I was expected to take my medication, go back to school, not talk about what had happened and leave it behind me.
What they, I, and no one else knew at the time, is that the panic attacks I had been suffering since the age of six,  which in a year and a half would prevent me from leaving home, were part of the epilepsy. (A little known fact about epilepsy is that fully one third of people with epilepsy suffer concurrent panic attacks – not out of fear of the seizures but from the same abnormal brainwaves that cause seizures).
I also just recently made another discovery: it is not normal to hallucinate when one closes one's eyes at night! I have always hallucinated. I was in the EMU (Epilepsy Monitoring Unit) this past August when I realized this. I actually polled the nurses.
Robert’s Sister:  Did the kids at school treat you differently because you had epilepsy? 
This is a difficult question because it brings up terrible memories and I know it still happens. We haven't made much progress in this area.
The first seizure happened in my junior year of high school. I did not have another one until my freshman year of college.
When I was being placed in the ambulance, a classmate, whom I didn't know well, was riding her bike past the house. She heard me cry out, "My books, where are my (school) books." I was drifting in and out of awareness and, at that point, I thought I had fallen down the stairs at school. She stopped to watch, and of course, went to school the next day with the story that I'd had "a nervous breakdown."
By the time I got back to school a few days later, all two thousand students, PLUS the faculty and staff, had heard the story, believed it, and of course, embellished it.
This was in the 70's , during the so-called "Jesus Freak" movement. (With pardons to my Christian friends, that's what it was called.) Many of my new Christian classmates came to me and informed me I was possessed by Satan and needed to convert or to accept Jesus.
Most of my friends refused to talk to me anymore. I lost all of my friends except a core group of four friends whom I'd known since elementary school.
In addition, the faculty avoided me. My math teacher called me up in front of the class and told me to "feel free to leave if necessary." Made me want to fake a seizure just to upset him!
I was in Drama Club – this was my main activity. Ironic, huh? We had closed The Music Man days before I had the seizure. It was our last production of my junior year.
The next year, my senior year in the fall quarter, I was not cast in anything. It hurt, but I accepted it. One isn't always cast.
However, in the winter quarter, the Drama Coach decided to do three plays in repertory. He had to advertise on campus to get enough students to auction.
When the cast lists for the three plays were posted, I checked for my name.
I checked again.
I asked a friend to check.
Her name, not mine. She shrugged, said, "What can I say?" And walked away.
I burst into the drama coach's office and demanded an explanation. He hung his head and said, " don't want a repeat of what happened after Music Man, do we?"
"What happened after Music Man?"
"You had a nervous breakdown."
I yelled, "I did NOT have a nervous breakdown! I had a SEIZURE!" (Like that's gonna make him want to cast me!)
Remember – this is a school faculty member, making decisions based on gossip!
I walked home. My dad happened to be there. I burst into tears and told my parents what had happened. My dad walked out of the house, got in his car, drove to the school, and yelled at the drama coach.
Did he cast me?
Did I get anyone to understand I was not possessed, I had not had a nervous breakdown, that a seizure was none of that?
And that was my senior year.
Robert’s Sister:  My heart goes out to Leslie and I greatly appreciate her reliving these difficult memories.  We will continue talking with Leslie tomorrow. 


Marykay said...

A powerful story with strong images and important information.

Be sure to read Part 2 also!

Thanks for being willing to share some of these tough memories, Leslie.


Trish Hughes Kreis said...

MaryKay, Thanks for your comment. I also thought Leslie was very courageous to share some of these very difficult memories. I am so grateful to Leslie!