A Blog of Flashbacks
Weird Brain Sensations
I have had a mixture of terrifying and marvelous hallucinations, illusions, sensations of feeling high on no drugs at all, out-of-body experiences, and several more unusual inner behaviors. These started when I was five, when I had scarlet fever for three months, and after I had had a temperature of 105.5 and was in a coma for a week. The coma ended with a near-death experience. When I arrived back, my world was different. I started seeing, hearing, tasting, and feeling things that weren’t there. At the time I did not know these were weird brain sensations.
I must have shared a few of these moments with parents, siblings, or friends only to have them look at me with curiosity, frowns, astonishment, or admonishment. I realized it was best not to share these moments with others. They seemed to find them odd, unusual, or occasionally funny. I learned to experience them quietly. Most of the time. Whatever occurred, I hid them from others unless I fell or passed out.
When I was seven, I decided I wanted to be a neurosurgeon. Except for the family doctor and dentist, I knew no one in medicine. I don’t know where I came up with that idea, but it stayed until I was 20. I took physiological psychology and was excited about the lab where we were to investigate the brain of a rat. Almost brushing her aside, I told my lab partner I was going first. Plugged in the drill. Turned it on. Hit the skull of the rat and saw 1,000 Ariel Square Four motorcycles with riders all in black careening in my field of vision. None collided. Except for my reality. My lab partner immediately took the drill from me, turned it off, and escorted me, while grabbing a lab stool, to the wall. She sat me down, told me I was grey, and leaned me against the wall. All I knew was that I would not fall forward because she had leaned me against the wall. I white-knuckled the sides of the stool to keep myself from falling left or right. I felt nauseous and extremely dizzy. Passing out would have been preferable to hearing 15 drills going into 15 rats’ skulls.
One “friend” I had, beginning when I was a teenager, was Dostoevsky. He was diagnosed with and on medication for epilepsy. I read Brothers Karamazov and some of his shorter works and biography tidbits when I was 14. Here was a man I could relate to even if I didn’t know his full story at the time. He wrote about what I experienced. To hear it from another person made me feel not alone.
I took up mountain climbing to get rid of vertigo. That didn’t work, but I learned how to maneuver on snow and ice. I once froze while climbing as the rocks moved and lost their real positions. Fellow climbers coaxed me around a particularly difficult rock as the entire mountainside moved. For some reason, snow climbing was much easier, perhaps because I’d grown up in snow and learned its colors better or perhaps because I could bring its nonexistent movements into focus more quickly. I learned to focus on mountainsides or hills out of focus by staring at the conflict to realize whether it was a 10-foot or a 100-foot drop.
Other times, I heard voices. Those were hallucinations and I responded to them—stopped, turned, looked, or even had a conversation. Others were olfactory or visual. Sometimes they were illusions and, knowing illusions were not real, I didn’t respond. Some of the illusions occurred while I drove, especially on cross-country trips. Cows, entire farmyards with barns, fences, green fields appeared in the middle of the road. I knew they weren’t there and they evaporated as I drove through them. I’ve always hated to drive, though. I feel tense as I have to keep the road level, the open fields on the sides, the mountain roads on a level.
I don’t know what sorts of diagnoses I received in my twenties and thirties when I saw three psychiatrists and a few clinical psychologists and a social worker. Psychosis? Post-traumatic stress? I’m sure some DSM-3 category. When one asked me my relationship with my mother, and worse, her relationship with her mother, I almost burst out laughing. These two people were two of the kindest, most gentle people one could ever hope to meet. I and my siblings were so fortunate, but try to explain that to a psychiatrist who is looking for a cause for the wrong ailment.
I was about 40 with a PhD, responsible job, and about twenty published writings, when I progressed to a series of doctors who seem to decide something was wrong with my heart. Five doctors have given me far more than five EKGs. When this series of attempted misdiagnoses began, I had a normal blood pressure of 90/60 or 100/70, a pulse in the 40s, and ran two miles a day until I began to swim a half to a mile a day. Still, they decided something was wrong with my heart. EKGs found nothing. Until, finally, one found an irregular heartbeat and her partner consultant declared, “You do not have epilepsy.”
We had the childish argument of ‘Yes I do, No you don’t, Yes I do, No you don’t.’ Realizing this crazy discussion went nowhere, I consented to fly to Anchorage, requiring two planes, and two more for me to return home. After yet another EKG, about the third in three weeks. I sat in the consulting room. Dr. Bałaban entered and stated, “What are you doing here? There’s nothing wrong with your heart. You have epilepsy.” We had a great chat for the rest of the consult and I showed him my charts from the ‘70s, ‘80s, and the previous months of 2019.
Do you know what it’s like to have any doctor, this time a cardiologist, say four times in the 20-minute consult that there was nothing wrong with my heart that, instead, I have epilepsy? Finally, someone has listened and heard me. Someone acknowledged my weird brain sensations were not so weird. They may not be normal, but at least they had a name. I had always felt something was wrong neurologically. To hear Dr. Bałaban say it so easily simultaneously astonished and comforted me.
He referred me to Seattle. I ended up in the office of the medical director of a University of Washington Neurology Clinic. My first appointment was an hour and a half; the second one two months later, an hour. One of his comments, said twice, was, “You’ve had this for 73 years and no one caught it before?” That’s right, Dr. Vossler. Here was someone else, eminently qualified, to tell me that I was not weird. Different and worthy of a diagnosis but not weird.
Three and a half years later and on increased dosages of medication I still want to cry from gratitude, astonishment, and the relief those two doctors offered me. Sometimes I still don’t want to believe I have epilepsy. As a society, we’ve learned that it’s a frightening disability. Its mere mention frightens some people. On the other hand, I recently came across a statement that people ignore the possibilities about having a sense of awe. I look at a dense forest. I stand by the ocean and watch the waves against the shoreline or out at sea. I often forget that we often ignore those events that should inspire awe.
What fills me with awe is that I have epilepsy. It is a neurological disorder widely differing from person to person, a disorder difficult to comprehend. I have it. I have these wild hallucinations and illusions. I float. I fall. I pass out and for mere seconds beforehand think I’m going to die. Yet I live and I am in awe of what the brain is capable of, whether it behaves like it’s supposed to or whether it behaves in some weird, bizarre way that I am very accustomed to. A friend once said to me, “Abigail, your brain is a very scary place to be.” I thought, Naomi, you may be a fellow writer and a clinical psychologist, but it is the only brain I’ve ever known intimately and I’m not only used to it, but I’m rather fond of it as well. I now know it fills me with awe.
For 20 or 40 years, when attending a conference or travelling with a friend, I said, if I pass out, please make sure I don’t hit my head on the way down. Some have been frightened by that request and others have responded with a simple assent.
For my own well-being, I feel fortunate that I don’t have tonic clonic seizures, previously known as grand mal seizures. I’ve seen several of them, the first when I was a teenager working my way through university. The seizures did not alarm me. I did what came to me as common sense. Be next to the child. Be sure she does not hit her head on anything. Be there when she comes out of it. Help the girl to bed as she’s tired afterwards and wants to sleep. I seemed common sense to me. By now, I also have adult friends have epilepsy. The routine is the same. I hope someone provides me that same calm ease. My husband, a retired RN with three military tours is very calm. I know if I were dying, I’d have my initial fear, but he would flip into action. Instead, because I’m not about to die—it’s just another seizure—he checks on me and heads back to bed. His action and lack of action or panic calm me.
For two years, I had weekly meetings with my doctoral advisor, an experimental psychologist and behavior analyst, Ogden Lindsley. One Monday afternoon in May 1977, Ogden came into his office. He was always late and I sat there waiting for him and working on my dissertation. After an interaction of a couple sentences before he sat down, he said in a demanding tone, “Did you smoke pot before you came here?!” Horrified that he would think that I would do such a thing before one of these meetings that I valued so much, I said, “No!”
Oh, if only I had continued to tell him that I was way off in my thinking and reacting. The first person to take behavior analysis from the rat and pigeon labs to human behavior at Metropolitan State Hospital in Waltham. MA, Ogden knew me well enough to know that I was neither psychotic nor schizophrenic. He would have headed me to a neurologist. In those days, though, I was still hiding to the world, and worse, to me, that there was anything odd occurring in my behavior or thinking. In about five years of counting my off-a-beam moments, that particular day was the highest count I’ve ever had—one day where I had 32 out-of-body, hallucinations, illusions, vertigo, dizziness, natural highs, etc., which at the time I glommed together and called them spontaneous highs. It was not a good day. I’m sure I missed some counts because my pinpointed set of behaviors was just one large group and I had no idea what was going on with me. I suspicioned it related to my three-month-long scarlet fever with its high fever, coma, and near-death experience.
What parts of this disability am I grateful for? The medication has made me comfortable. No longer do I have hours of dizziness, vertigo (even on flat ground or in a chair), or that sense of “high” on nothing, that is, nothing other than whatever is occurring in my brain that I cannot consciously see or sense. One episode lasted for four days creating such weird sensations I could barely be aware of any individual ones. Imagine conducting a meeting of the top 12 people I supervise and seeing the conference table move or change shapes. And I was supervising 70 some people at Topeka State Hospital! Therein came my anxiety as I put all my energy into behaving normally.
When I’d been on medication for a week, I suddenly realized that the road I drove was flat; it did not curve up a foot or so in the middle. The spruce trees stood tall, green and motionless on the sides of the road, and the clear sky stayed above them and did not dip down to hang somewhere between the treetops and the paved road. So this is how driving is supposed to be! When I’d been on medication for a year, one day I realized my low-level anxiety had completely disappeared. Gone! I felt a sense of relaxation I had never had before. A week later, I told my husband my anxiety had vanished, he acknowledged he’d seen a change in my behavior he'd not seen in the 50-plus years he’d known me.
As for the irregular heartbeat of four years ago, I now know that a seizure can trigger an irregular heartbeat. I’ve learned much more too from doctors, friends, and reading. Epilepsy does not need to include tonic clonic seizures. People have wildly differing experiences. With 86,000,000,000 cells, that is 86 billion, that shouldn’t surprise anyone. I’m astounded by what I’ve read and learned from the others in the two epilepsy groups to which I belong.
I am not grateful for the extra sleep my body says it not only needs but will take. I used to sleep five to six hours a night. I paid for it then and would pay for it if I did that now. Nor am I grateful for having slept 12 hours Sunday night, 10½ hours last night or nine the night before. It’s so time consuming and I’d rather write poetry, fiction or nonfiction, or about behavior analysis. So be it. I can still do the work I like just less of it each day.