A Storm of Dread
My driver’s ed teacher reached over and put his hand on the wheel.
“Now this is going to happen to you sometime, and I just want you to know how to react when it happens.”
He pulled the wheel slightly and the car veered off the road and onto the shoulder, jerking onto the uneven space between the asphalt and the gravel.
My heart began to pound. I was sure we were going to run off the road and into oblivion.
“Now just pull it back on the road,” he instructed.
I clenched the wheel and used all the force I had in my stiff arms to pull the car back onto the smooth pavement.
Until that moment, I hadn’t thought of all the things that could go wrong. The only thing I had been worried about was learning how to drive our family’s stick shift Ford Escort before the test. We had an automatic Mercury Zephyr, but the car didn’t always turn back on after it was turned off, at least without a little extra manipulation. I didn’t know the technical term, but it basically involved having someone stick their finger in a certain flap in a round part of the engine as someone turned the key. Since it was unlikely that a driver’s examiner would let me pass after sticking their finger in my car’s engine, I needed to learn stick before the test. That was turning out to be harder than my teacher’s test of remaining calm under pressure.
My dad, my sister Mary Kay, and my brother Tommy had all been trying. This day, Tommy, a seasoned driver for almost five years was trying in the Thomas Jefferson middle school parking lot.
“Okay, now let it out slowly, and give it a little gas.”
I let the clutch out slowly and then lost control and the car jumped forward and stalled.
We both sighed.
“Okay, try it again,” he said.
I pushed the clutch in, my leg tiring, and turned the key. I let it out again and we jerked forward another inch past the doors where parents dropped their kids off during the week. It felt like we had been moving inch by inch across this parking lot forever. I didn’t feel like I was ever going to get this.
“You just have to feel it,” he said.
As Tommy talked, I had a hard time concentrating on what he was saying. Something strange was happening to me. I had never felt like this before.
There was a slow buzzing inside my head. That turned into a tingling current of electricity running through my body. Then an enormous sense of dread washed up from my feet to the trunk of my body and into my head like a wave, hitting each part individually, but somehow all at the same time. The sensation lasted a few long seconds.
Next, I experienced déjà vu, not just that we had lurched through the parking lot innumerable times, but that we had lived this exact moment before some other time.
Then I was frozen from the inside, losing contact with the car and with Tommy. I couldn’t talk or move anymore. The strange sensations in my body were amplified, but I didn’t know where I was or what I was doing. For a few seconds, I was no longer there, but I didn’t know where I had gone.
Finally, it was as if I had woken up from a deep sleep.
It was still as if I was watching as someone else. I saw Tommy trying to get my attention. He was shaking the top half of my body.
“Cath? Are you paying attention?” he yelled.
I shook my head, trying to wake myself up. I started to remember things. I was learning to drive. “Yeah, yeah, I just spaced out for a second.”
“Are you listening?” his frustration with my unresponsiveness and the lessons was clear.
“Yeah, I just had a déjà vu,” I said.
“Okay. Can you feel any difference? I think you were almost getting it.”
I put the clutch back in, but I couldn’t concentrate. I could barely move. What had been simply confusing before was impossible now.
“Do you want to stop for now?”
“Yeah, let’s switch,” I said.
I got out of the driver’s seat and he took my place, driving the few blocks home. I felt sleepy. I wasn’t sure what had just happened. It was the weirdest déjà vu I had ever had. Tommy appeared glad to be done with the lessons and when we got home we didn’t talk about anything that happened in the car or the fact that I had been unreachable for a few minutes.
I replayed the sensations again, the quick succession of buzzing, electricity and dread that had washed through my body before I felt déjà vu. That had been weird, but what was even stranger was that I had almost forgotten where I was. It felt like I had checked out for a few seconds. It was as if I was gone from my mind. I thought about it a few more times, but decided it was just a strange déjà vu and decided it was better not to think about it again.
Eventually I learned to drive stick shift, though not before the test. I ended up taking my driver’s test in the Zephyr, which luckily stayed running the whole time and did not need to be restarted with a finger to the mystery flap in the engine. Just as my family members had told me, learning to drive stick shift was something I had to learn to feel on my own and that I eventually did. I don’t think I’ll ever forget how to do it and I can’t remember what it was like not to know how to do it. Now I can do it without my conscious mind’s input.
What had happened in my brain when Tommy was teaching me to drive was a sensory experience of sorts too, also occurring outside my control, and a feeling I would never forget. Later I would learn that what had happened was a seizure. But I didn’t understand that yet.
Instead I guessed it had something to do with my headaches I had started having a few years earlier. Mostly they were dull and achy, but every once in a while I got a one that was much worse and seemed to last for days. Later when I learned that my headaches were actually migraines, I was struck by the similarities of seizures and migraines. Both occur when there is a drastic shift in the electrical charge of the brain, similar to the shift that is now thought to cause the dilation of blood vessels in the brain that sets off a migraine.
Some seizures also have a warning or prodrome phase, as a migraine does, that comes hours or days before the seizure. I didn’t feel any warning symptoms before my seizure or if I did I didn’t know I had them. But I was a headachy 15-year-old, so I could have. Prodromal symptoms like headache, irritability, agitation, bad temper, and crying, were a daily occurrence for me.
What I did feel that day in the car with Tommy was an aura. Like the light beam in my eye, itching, or yawning, that would later signal an oncoming migraine, an aura was a warning sign that a seizure was imminent. In the car that day, a wave of what the text books would call sensory and psychic experiences overtook me. The slow buzzing that turned into a tingling current and the sense of dread washing through me, from my feet to my head felt as if it lasted a few long seconds. The sense of déjà vu was the only thing I had words to explain. I had experienced déjà vu before so it felt safe after the other disorienting symptoms. But still it wasn’t exactly the same because when I had had déjà vu before, I had never felt as if my mind had been taken somewhere else.
Much later, as I was reading a list of seizure symptoms, I’d finally find the words to articulate what the experience felt like. It was as if I was detached from myself and was having an out-of-body experience. I would learn they were called absence seizures, a time when I just sort of retreated from my normal self. To my brother, it looked as if I was staring off into space.
It was a long time before I had another one of the spells, as I began to think of them since I didn’t have any other word for them yet. I had heard my mom call the small strokes my grandma’s roommate at the nursing home had spells and I thought it was a good word to describe what was happening to me.
When I did have another one, it happened pretty much the same way. The buzzing. A sense of dread. Then déjà vu. Then I was gone, frozen in time. And then I was back and confused. The spells came slowly at first, maybe once or twice a year. After the first, I had them when I was alone so I didn’t have to explain them to anyone. I decided it was better to tuck each one away, keeping it my secret.
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By the time I was a junior in high school, I had developed a new interest in psychology. It was thanks to Mrs. S, one of the coolest teachers in our high school. She had recently divorced and was in the midst of changing her name back to Ms. D., so some students called her that, or even by her first name, Deb, which she didn’t mind. She was young, pretty, had spiky hair, and had transformed her wedding ring into a pendant that she wore on a chain around her neck.
Each day in class Mrs. S. brought out the most extreme psychological cases for our pleasure, rolling in the television to show us movies she had taped off PBS and cable or rented at the local video store. One day she showed us a documentary about a group of people with schizophrenia who were on an outing at the mall. It was a few decades old and the clothes reminded me of the ones I liked that Mary Kay had once worn, brown suede Earth shoes and bell bottoms. Mrs. S. said she thought it was still a good way to learn about schizophrenia. As the announcer mentioned an insane asylum, Mrs. S. pressed pause on the VCR and told us that the correct word was “mental health facility.”
I leaned forward in the darkness, riveted to the TV screen, watching the people from the mental health facility riding up and down the escalator. Some were catatonic, like the guy in One Flew Over the Cuckoo’s Nest, while others were more boisterous, talking incessantly with other mall-goers. When one of the residents became too aggressive and scared the other patrons, he was taken out of the mall and never returned. I was especially interested in one fellow who twirled a short strand of hair on top of his head. The cameraperson paid a lot of attention to this nervous habit, zooming in on the man’s fingers working the small piece of hair. I too liked to play with my own hair, a nervous habit I had picked up from Mary Kay, twirling strands around my thumb, pointer and middle fingers. I made a mental note to stop doing it, but never did.
After the semester ended I looked for ways to feed my fascination with the oddities of the mind. Mrs. S. suggested two of her favorite books about another intriguing part of abnormal psychology – multiple personality disorders. I dove into The Three Faces of Eve, carrying it with me to class and reading it in the hallway after lunch.
In the book, I learned about timid Eve White who suffered from blinding headaches and disturbing blackouts. During a meeting with her psychologist, another personality emerges, Eve Black, who is as different from Eve White as the name implies. While Eve White was prim and proper, quiet and timid, Eve Black was carefree, playful, provocative, and flirtatious. While she was out in Eve’s body, she drank and danced until all hours of the morning. Unlike Eve White, who was careful with everything she said, Eve Black said everything that was on her mind.
I also read with interest how when Eve Black took over Eve White’s personality “The brooding look in her eyes became almost a stare. … An alien inexplicable expression then came over her face. This was suddenly erased into utter blackness.” I wondered what I had looked like that day in the car and if my face was as blank and expressionless as Eve’s.
I also read Sybil, a book about a woman who had more than 20 personalities. Similar to Eve, when Sybil was switching personalities, she had something called a fugue state, a period of amnesia while the other personality took over. As I read I thought about what had happened to me during my spells and how I hadn’t had a name for it. I liked the sound of the word fugue and wondered if that was what was happening to me.
I began putting together parts and pieces of the stories I was reading — the blinding headaches, moments of confusion and altered consciousness, what I was now calling fugues — and leading myself to a diagnosis. I wondered when my symptoms would erupt into a full blown multiple personality disorder. Or if I already had one.
Instead of telling anyone, Eve and Sybil and their multitude of personalities became my new companions. I was too old for imaginary friends, but all my eight older siblings had moved out of my parents’ house and were beginning their own lives, so the multiple personalities were a welcome new friend. With 23 personalities between the two of them, it all was so exotic. I waited for my own fugues to occur. After one, I looked for clues about what might have happened when I wasn’t conscious. Did people refer to conversations we had while I was out? Did I have bruises on my body that I didn’t know the origin of? I only found these remnants once, after drinking with my friends and falling down the stairs.
Like Eve Black, had I bought things I didn’t remember buying? It felt like I was gone for a few seconds, but how did I really know? Once after one of my fugues, in a parking lot, I found myself standing near a car that wasn’t mine. I wondered how long I had been out and if that was what it felt like to be Eve or Sybil.
What would people think of me if they knew I was like Eve or Sybil? I began to take a sick interest in the idea of having more than one personality, a grown-up version of a fantasy of cancer that had only been a hernia when I was younger. I hoped that the fugues might happen more frequently to help me continue to construct my story. The frequency had increased, to maybe quarterly now so I didn’t have enough material to fully immerse myself in the story, but enough that I could return to it now and again.
I hoped I was more like Eve than Sybil. I thought three personalities would be manageable, but 20 would be just scary. In Three Faces of Eve, near the end, a third personality called Jane emerged. She was a perfect balance between the two Eves. She was steady and mature and willing to work with Eve’s psychiatrist to solve the mystery of the multiple personalities. When the three personalities merged, it was Even Steven Jane who was left.
Though I didn’t know it then, this was the part of the story I was most intrigued by. I liked the idea of Jane’s perfect personality and wanted someone to come in and find that personality inside me and make her take over. I didn’t have multiple personality disorder, but I longed to be Jane.
I had learned how good it felt to be the center of attention at home. I was willing to do anything to fit in and somehow stand out at the same time by performing for my siblings. As the youngest of nine children and a large gap of four years between Tommy and me, I was always gullible enough to fall for anything my older siblings could come up with, plus I loved the focused attention of having all eyes on me for a few minutes. It was so different than the innumerable moments when I felt lost as one of the crowd, lined up for family photos with too many kids to count or bunched around a kitchen table with as many seats as the one in the school cafeteria.
Once my older siblings taught me a scene from Welcome Back Kotter where Washington gets hooked on drugs. Vinnie Barbarino pretends to be on drugs and acts as if he needs more. My siblings had all thought it was hilarious and someone had taken it upon himself to teach me how to stumble around in the same way. I don’t remember the lessons, but if I had to guess who took the lead, it was likely my brother Gary. He was nine years older than me and found me to be a perfect little toy. He had invented games such as one where the object was to see how long I could stand up while he shook me by my ankle and had once, without any struggle or resistance from me, tied me to the crabapple tree in the front lawn with a garden hose.
Egged on by them, including once in front of a living-room-full of my parents’ closest friends, I would do the act on command, hunching over and stumbling, saying, “Gimme drugs, gimme me drugs.”
With my training at home I naturally became the one in high school who was willing to do anything for a laugh. I specialized in physical comedy which I had learned not only from the routines they had taught me, but from watching my siblings who also often vied for attention and laughs. Tommy was everyone’s favorite and he took pleasure in making us laugh by taking a fall. Whenever we went somewhere public, he would run into signs, fake hitting his head while using his hand to make the metal clang. We got a big kick out of it when people would turn and look. He bought silly hats or fake hammers that made screeching sounds when he hit them on my head in public. His signature move was one he had pulled out again and again at our brothers’ weddings. He would spin around, drop into the splits and then pop back up again, while my siblings and I gathered around him clapping and chanting, “Splits, splits, splits.”
In high school I carried on his act, faking or taking a real spill at dances. I was the one sweating profusely and dancing as wildly as possible in the center of my group of friends. And when we drank, my clown persona was only amplified. It didn’t take me long to build up a tolerance and to become one of the drunkest and loudest of my friends. Drinking seemed to loosen up the crust of uneasiness which had begun to take hold inside me. While drunk, I could do whatever I wanted without feeling bad about it.
Other times I threw up, cried, or got others in trouble. But usually I found that if I made a funny face or a joke about it afterward, people still seemed to like me. I was a bigger version of the kid who would do anything to win the attention of her older brothers and sisters. Except this one hid in the bathroom during the slow songs, because no guy would ask her to dance.
My parents and family knew nothing about my personality with my friends. I had grown up watching them and hearing their stories, but when I did the things they had done, it was as if there was no audience left. I had heard their stories second-hand like myths from other lands.
We had laughed many times about how Rick, the second oldest, had held a party while my parents were gone. My oldest brother Chuck wanted to close it down and was making people leave through the front door, only as Rick let them in through the back door. Now when I had my own friends over while my parents were out of town I wasn’t doing it with my siblings who had all left town, but instead was worried that my brother Chuck might drive by on the way to his own house. And I wasn’t afraid of him telling on me, but feared his reprimand.
I had been the little kid my siblings used for amusement and had grown up with their world almost above me, imagining it to be the real world I would inhabit someday. I saw their worlds play out, sometimes in real life, other times through overheard conversations I didn’t understand, or through information I took in and kept to myself. But by the time I was approaching my own adulthood, there wasn’t anyone to compare notes with.
Some siblings had already left college and were busy raising families of their own, while others were struggling to find meaning in their own lives. We weren’t together in the same house anymore and there wasn’t much time for pranks, so my role as mascot began to change. We began to get together for moments, weekends or even just an evening, where time was short and with many people it was hard to talk about anything especially as the grandchildren began to arrive.
Perhaps because I didn’t say much, my mom referred to me as the shy one. I didn’t feel like that with my friends and the dissonance between my personality with how I acted with them and how I was with my family made me long to be someone new, like perfect Jane. Sometimes, it almost hurt to think about myself at all.
When I was in bed I would start to think of myself and my head would almost buzz, though in a different way from one of the fugues. I would zero in by first thinking of myself in name only. From there I would begin to think of myself as a being. And then I would start seeing myself as God or someone outside myself would, from above me in my bed. Then I would feel the expansive darkness stretching out around me. It was as if I could see myself as one would during an out-of-body experience. I was also as if for the first time I understood that I existed. Except instead of bringing me comfort, it scared me to death. Every time I went through the strange series of events, it was as if was learning again that I existed and it was as horrifying as it had been the time before.
During the day I had the same detached feeling when looked at myself in the mirror. If I didn’t notice myself I was fine, but then something would switch and I saw myself as someone else might see me. It was not as if I was looking from inside my head anymore, but rather as someone would from another viewpoint, from outside my own head. The shift was even more unnerving than when it happened in bed because with the mirror I could see my true reflection, not just the image I held of myself in my mind’s eye. But the mirror image had the opposite effect. Instead of proving my existence, it seemed to cast doubt on my actual presence. If I could view myself from a vantage point outside myself, I must not be the person I thought I was inside my head. The person I was looking at had to be an illusion and seeing her there made me feel as if I would crumble to nothingness.
Later I would find out that the same thing that was causing the spells was likely causing this out-of-body experience and me to question my own existence. I learned that this sense of detachment and the feeling that I could see myself from outside my own body were common symptoms of the seizures I would later learn I was having, specifically seizures that begin in the temporal lobe.
I was years from knowing this fact and my brain ages from being able to understand what that meant. To me, illness was still a black and white concept. On one hand, I could feel the love and attention being under the weather brought. But those were the ailments of childhood, something as simple as an upset stomach or a scratch. These strange symptoms had catapulted me into a much stranger place of not injury, but disease. Even worse, it felt as if it might not be my body that was disordered, but me.
I added the strange detached feeling to the list of things that were too bizarre or that I just didn’t discuss with my parents and pushed it out of my head. I stopped looking at myself in the mirror for more than a few seconds. I thought about other things before I fell asleep. I thought about the upcoming dance or how great it would be when I’d finally get a boyfriend in college. I started to think about myself as Cathy the character in the same way I did when I was drinking or when I was performing. Keeping a wide view on the horizon was less frightening than zooming in on the details.
Excerpt from In the Absence: A Memoir of the Brain
Genre: Memoir, complete at 59,000 words
by Catherine Lanser
As the youngest of nine children, Cathy finds the fastest way to gain the attention of her harried mother is through a series of real but inflated injuries and illness, from broken bones to migraine headaches. But when unexplained epilepsy surges through her body like an electrical storm of dread she experiences it as her own secret madness. With no one to talk to, she comes up with all sorts of fantasies about what it might be, whether it’s multiple personality disorder or schizophrenia.
Finally, eight years later, she comes clean and is diagnosed with a brain tumor. Years later, when her father’s brain is destroyed through a disabling stroke and she watches her family wrecked and rebuilt again and again by neurological disease and growth, she begins to understand how we all bring more to the world than our neurological dysfunction.
This memoir has a rich sense of place in the Midwest in its setting and in the values of its no-nonsense large Catholic family who believes life is about getting on with it. Still it is a medical memoir of hope that shows Cathy as she comes into her own. We see Cathy study the brain for all its mysteries and readers who are interested in it and its diseases will learn about its psychology and biology too.
It is for readers who are fascinated by the brain and a firsthand account. They read ADMISSIONS: LIFE AS A BRAIN SURGEON, by Henry Marsh and THE RIVER OF CONSCIOUSNESS by Oliver Sacks. It is alao for those who have experienced epilepsy, stroke or migraine – three of the four most common neurological conditions in the United States – but also the more than 43 million Americans caring for a loved one at home.
This is my first full-length work of narrative non-fiction. A shorter version of the story, “The Smell of Lilacs” was published in the anthology STORIES OF STRENGTH and the response quickly showed a need for the rest of our family story in the marketplace. An excerpt also appeared this October at Open Thought Vortex literary magazine. For 20 years I have worked in health care, and have helped tell the stories of individuals like those in my book through my writing, public relations and marketing efforts.
Thank you for your consideration.
Catherine Lanser (Gove)
608-334-9836
catherine.gove@yahoo.com
www.catherinelanser.com
