A Blog of Personal Thoughts
When My Life Changed:
I Have Epilepsy
The plane just took off from Seattle headed to Juneau, the first leg of my trip home. I stare out the window before takeoff, amazed as I reflect on my traveling life. I started packing at age three–-my mother told me to put my hair ribbons on top of what she had just packed and shut the square black leather suitcase. We drove in our move from Massachusetts to some other New England state or New York and I’ve been traveling ever since. I took my first flight from Bangor to Boston at age nine. One parent was at the apartment in Maine and the other at our home in Massachusetts. In those days everyone rode prop planes. I loved the bounce in clouds and sunny spots, a fantasy I’d never had turned into reality before, yet it was the reality that lived in my brain and occasionally invaded my daily life. On this day as the sun rose in Seattle, I reflected on the majority of my life, its twists and turns that had brought me to this moment when my life changed forever, when I learned I have epilepsy. I am aware I have had a privileged life of an excellent education, a life unique in the history of human experience to be 36,000 feet above thousands of square miles of mountains and glaciers that lie in British Columbia and Alaska. Before jet planes, no one had been able to look down from so far on mountaintops and glacial fields…except for me in the middle of one of those episodes.
Last October I passed out, landed on the floor, and cut the back of my ear. Later that week I went to the doctor’s office for one of those routine visits that happens when a person is in her 70s. I mentioned that I had fallen the day or two before and cut my ear. She was alarmed and ran a bunch of tests, then informed me I had a heart problem. I disagreed with her, no it’s in my brain, but she was insistent. She referred me to a cardiologist in Anchorage. I was not happy with that so I made the trip as short as possible. I flew up in the morning and home that afternoon, over 600 miles each way. I did not want to make this a pleasure trip.
The cardiologist ordered my third EKG in as many weeks. When he walked into the room, he introduced himself with a handshake, his name, and said, “What are you doing here?”
“Thank you!” I replied. He listened to me as I described my symptoms.
Five times in that half hour consult, he said, “You have epilepsy.” He didn’t say I think you have epilepsy. He was definitive. I was delighted. He listened to me, agreed with me. This fellow was assertive. I needed to be in a neurologist’s office not his. Maybe I should finally find out what had been going on inside my brain for the past 73 years. Still, in the back of my mind was the wonder about how much a cardiologist knew about neurology. Was I on another wild chase?
I had had scarlet fever when I was five and spent the first three months of 1946 in bed. With a temperature of 105.5, I was in a coma for seven days somewhere in those months. I floated past my mother, out the window, and into the clouds—into Death. Obviously, I came back, but somewhere inside me, my life changed. The house was the same. My family was the same. My friends were the same. Now, though, I perceived things differently, but how does a five-year-old put that into words? How does a little girl articulate to her mother, who never would have understood, or to her father, who might have understood, that today and henceforth she is not like their other children? Her brain and her reactions to some things had changed. Now she was different from the little girl they had created and knew. Now she was vastly different from her siblings and from the infant, toddler, and little sister they knew.
I was not hospitalized for any of this. We lived just outside Boston and boatloads of wounded from the World War II European Theater still arrived frequently. I’m sure my parents and the doctor respected that then, as I do now; these soldiers were a greater national priority than a dying five-year-old.
Diagnosis from the radiologist reading the MRI: Epilepsy, followed by many medical terms I do not understand. I read this and feel edgy. I reread it ten times that day and the next. I’ve been like this for 73 years. Why do the technical words now frighten me, make me nervous? I almost cry.
I understand, am unwilling to accept, must accept, and can literally weep for the impact that event has had on most of my life.
As a child, I became more sensitive, curious about people around me and their reactions and possible emotions and thoughts. I was different, but I also learned to hide it. I told my teenage schoolmate, Abigail Thomas, some of my odd experiences. I told a social worker about it when I was in my mid-thirties. They believed me. I told a doctor in my mid-forties and another two other medical people in my mid-sixties. Either I didn’t understand it well enough to describe it right or they understood but had nothing to offer. At that point, I continued to spend my life feeling very different. Naomi Patterson, a member of our Topeka Table for Eight writers group and a clinical psychologist, said one Wednesday evening, “Abigail, your mind is a very scary place to be!” I said nothing, thinking this brain is the only one I’ve ever had and yes, sometimes it frightens me too…weeping again…but isn’t everyone else’s mind like this? Or when a friend said, “Just wake up and say good morning. Do not ask how many times the earth has revolved while going around the sun.” Or when another good friend said, “Abigail, how do you live?” Hmm, maybe I am a little different.
I left the cardiologist’s office with a smile plastered across my face. I called my son where I would spend the night on my way home. I told him when I arrived I wanted a gin and tonic to celebrate. He obliged. I have one a month, usually while attending a conference or visiting some family, but this great news called for something special—a G&T and a call for the referred neurology appointment.
I had another MRI and another EEG, and a consult of an hour and a half with a neurologist who believed me and asked all the right questions. At one point he said, almost under his breath, the cardiologist was right. I could have kissed the man and danced in his office. He was astonished I had gone for 73 years of my life with no one picking up on this before. I can see how it would have been missed—I’ve never had a tonic (old term, grand mal) or absence (old term, petit mal) seizure. I just behave oddly sometimes, work very hard, full stop, and cover up my oddities as best I can. Above all, I say nothing. Oh yes, and I pass out very occasionally, maybe once or thrice a year or once every five or ten years.
To repeat, diagnosis from the radiologist reading the MRI: Epilepsy. I stare at the word, say it to myself.
To use a phrase that belongs to another group of people, as of yesterday, I came out of the closet.
I helped myself on this route to discovery by monitoring my own behavior. Across the years, I’ve counted some of my unusual behaviors—1980, 1981-82 for fourteen months, and 2018-2019 for eight months. Now what I count will change a bit.
Forty years ago, I thought if I counted natural highs, illusions, ESP events, hallucinations, creative writing ideas, and creative professional ideas I could figure out something and change these weird inner behaviors and their outer behavioral causes. I learned that natural highs are influenced by the pollen counts where I lived, Kansas. I learned I have a lot of illusions—the missed perception of something visual, auditory, or olfactory. I learned I have very few hallucinations, but can sense something about to happen (ESP) about fifteen to eighteen times a month. I learned I had an increasing number of creative ideas and a decreasing number of professional ideas. The last two helped me realize how much I liked to write and led me to the decision to retire early. I learned that caffeine, water, marijuana, amount of sleep, and alcohol had no influence on these weird events of my daily thoughts and behavior. I later learned not to smoke pot because a toke or three would make me three to five days to return to far fewer illusions, out of body feelings, and other weird moments.
One afternoon, years ago, I drove down 10th Street in Topeka and said to my son, Seth, age ten, “Do you ever feel as if you’ve gone up to the tops of the trees and are driving through the leaves?” He looked at me. “No.” Hmm, I should have had more children and then maybe I’d have one who thought as I did. No, I would not have because this is not usual and I now know not normal.
The beauty of riding through treetops, floating above the bed or chair, walking on air, or of seeing a cloud come through the front door and wrap itself around me, never left. These events bathed me in warmth and I loved them. After all, I’d grown up with them. In my childhood and adult bedrooms and now in my study is a Persian carpet, a blue Sehna. As a child, the three border parts represented the house, neighborhood, and planet where I lived. The six by ten-foot area in the middle was the universe beyond Earth and our galaxy. I had to be very courageous in to dive into the middle whose pattern often played a figure-ground flipping. After all, to leave this planet and go off into the unknown is…well, it might have unknown consequences. All the while, though, I knew I was safe in my room in my home with my family. Today, this carpet is in my study. My chair rests on it now as write.
Feeling intense dizziness, I always touched or grabbed onto things. I thought if I didn’t, I’d fall or pass out. The sometime rapid occurrence of bizarre illusions, an uttered sequence of nonsensical (to the listener) ideas, or responding to a hallucination never disappeared completely. These events did not feel warm. They terrified me. Every time I was about to pass out, I thought I was about to die…again.
I didn’t mind the illusions even though I was aware I’d never met anyone else who had them. I was still quite young, definitely under 30 when I tried to talk to others. I tried to describe the overall beauty, confusion, and fear, but except for my friend, Abby, and my father, I seemed to fail miserably. Most people’s reactions let me know I’d better not mention it.
Below is the first part of a prose poem I wrote in 1967 for my first husband, artist Edwin Koch. I found this last weekend among his belongings that he left to our son. I was astounded when I read it. It describes what happens to me in these odd moments.
Walking on the floor in the clear, cold icy-halled library, when the floors, walls, and ceilings suddenly take flight and move away. I am in a translucent space walking through a world which does not exist, passing mechanical stuffed dolls which move rhythmically, rhythmically as if they have a definite purpose and place to go. But they are as unreal as the floor and the walls. If I were to blink all would disappear and I should be the only thing left. The only think left, no, I am the only thing there is because all the rest of it is a figment and product of my imagination. I am the only reality in an unreal world.
That was a month ago—all my previous life as well.
The odd events continued. When I was the assistant principal at the school on Topeka State Hospital grounds I stood leaning with one shoulder against the wall in the hall outside my office in a professional conversation with a teacher and a school psychologist. Suddenly the wall sunk back into itself about six inches or a foot. I almost fell. Both reached out to catch me. I wanted to say ‘don’t worry; the wall just moved.’ Instead I said I must have turned my ankle and lost my balance.
Another time it snowed heavily. I was on the interstate from Portland to Eugene. Traffic had reduced to one lane. I saw a red barn with some sheep and cattle inside a large fenced area smack in front of me. Of course it wasn’t real so I just drove straight through it and the farm scene disappeared for the moment. It kept coming back and I kept driving through it. I felt very happy after three more hours of this to finally reach my turnoff. Such things were normal for me, but I knew better than to tell anyone.
I sit here now wondering why a diagnosis took so long. It took 73 years for someone, the cardiologist, to hear me and say I was in the wrong office and needed to see a neurologist. It took 73 years for someone, the neurologist, to hear me and listen to the full story I had to tell. I had sent him four pages of notes telling a lifetime of events. I sent him fourteen ratio charts—standard celeration charts* —showing the frequency of events I had counted across some of my adult years. He spent an hour and a half asking me questions, listening to my answers. Why did it take so long to land in this person’s office?
How long will it take me to wrap my head around this information? How long will it take me to wrap my head and my life around being grounded?
How long will it take the anticonvulsant medication to kick in fully? How soon will I be normal, even though normal is just the word every parent wishes to hear of their newborn child? Can I live the rest of my life and never pass out? Will I never have to call Barbra again when Robert’s not home just to talk to her while I go through one of my extreme dizzy, out of body episodes? Will I never have to tell Robert I’m on the floor but I’m okay? Okay at least by my unusual standards. Will I never again have to tell a travel companion not to call 911 if I pass out, but to be sure I don’t hurt myself when I fall? Did the cardiologist and the neurologist really identify the problem or am I just hoping for or denying this life changing news? Do I really have epilepsy or some related aftermath of illness at age five?
I must be on the right track or why would the doctors have responded so.
I must be on the right track or the anticonvulsant medication would not be making a difference. I better live at least another twenty-five years as I want to enjoy what this thing called “normal” is supposed to feel like.
Am I happy to have an explanation? Yes!
Am I happy to lose these strange, wonderful, and occasionally frightening images? Usually no. If they’re just natural highs and illusions, I can use those for writing. Absolutely yes if the natural highs lead to extreme dizziness or an out of body feeling, which too often leads to an aura, which sometimes leads to me landing on the floor passed out.
I don’t yet know how to feel, though. Who am I if these magical and sometimes terrifying moments go away with medication? I am the same person who changed by the miracle of modern medicine. Without it though, I’m the same person I’ve always been. Or am I a different person because of the medication? Who is the real Abigail? I don’t know. Did the real Abigail leave when I was five never to return or is this real Abigail who has partial epileptic seizures treated with medication? All I know is that my life has changed—changed from age five, changed at age 78.
Am I sad losing a part of me? I don’t know. It’s only been a few weeks. Am I comfortable with this change? I know I feel safer, but I think I miss me.
The other day I found myself touching the wall or another object as I walked through the house. Goodness! How long have I been touching walls to be sure they’re solid and don’t move? I don’t know. I know that now I don’t have to assure that buildings and trees in the forest are where I think they are and now they’re stable. I can ride my bike straight down the white line at the side of the road without wobbling off it a foot or two. I can turn my head to see if there’s a car or moose behind me without changing the position of my bicycle because it doesn’t make me dizzy to turn and look. I can stand from a sitting or lying position without getting dizzy. I rather like this world! It’s stable. It’s balanced. Things stay where they belong and don’t move around in space willy-nilly. What a novel experience! I might just grow used to this new me.
As the days go by I continue to attempt to wrap my mind around this. I fall asleep or wake up thinking the medical community reached its conclusion. I didn’t misread this or that report. Finally the medical world figured out that I have epilepsy. No, is that really what they said? Again I pull out the report and read its conclusions. Surely the doctor would not have put me on an anticonvulsant medication if this were not true. Surely this medication would not seem to be some miracle drug if I didn’t have epilepsy. I’ve suspected some diagnosis like this for years. Why am I having trouble accepting it?
Why did it take 73 years to figure that out? The medication is wonderful. It's the diagnosis that throws me. I always felt it was something neurological, but epilepsy?! Maybe it’s something else. But the report said it in black print on white paper. I’m reading it. I have a diagnosis. Now I just need to get used to it. I won't pass out on anyone else again. Amazing. I can drop this constant caution I've lived with almost all my life. Amazing. I don’t have to check where the nearest wall is, where the next piece of furniture is, whom I’m staying with, and can they handle this if I get weird or pass out.
I don’t ever have to lie in bed again and watch the trees begin to sway slightly then increasingly rapidly till they whirl a circle so fast around the house I should feel sick to my stomach…but I don’t because I’m stationary. I can lie in bed motionless and watch the beauty and visual magic of this neurological, epileptic event…except I’ll never have those frightening and beautiful episodes anymore.
* A standard celeration chart shows change across time. There are daily, weekly, monthly, and yearly standard celeration charts. which encourage and aid immensely in making good decisions to change behavior.