A Blog of Flashbacks

Epilepsy Anniversary #5

July 2024

July 15, 2019, five years ago today, I had an appointment with an epileptologist at the Neuroscience Institute at the University of Washington in Renton. After my local doctor said I did not have epilepsy but a heart problem—a diagnosis I strongly disagreed with—I took the two-plane 625-mile one-way plane ride to Anchorage to see a cardiologist. Not happy with my original doctor’s opinion, I made the return trip in one day. Having looked at at least one of the four or five EKGs I’d had in the previous few weeks, Dr. Cardiology walked into the consulting room and said, “What are you doing here? There’s nothing wrong with your heart. You have epilepsy.”

“Thank you,” I replied. That was April 2019.

I spent July 15 in the neurology section of the Renton hospital. I had an MRI (magnetic resonance imagery) in the morning, a delicious lunch followed by an EEG (electroencephalogram), then an hour and a half with Dr. Epileptology as he asked question after question, told me I had epilepsy, and gave me a prescription. I remember his smile when I said a cardiologist’s diagnosis of epilepsy is worth about two bits. He shook his head in disbelief that in 73 years no other doctor had come to this diagnosis.

I had suspected something wrong with my brain since I was five. I had scarlet fever, was in bed for three months, part of that time seven days in a coma with a temperature of 105.5 F. When I came out of the coma, including a NDE (near death experience), I asked my mother, the only person ever in the room, “Mummy, what’s heaven like?” I thought I asked a simple question, but my poor mother fell back against the wall and slid down a bit. Parents know everything and I didn’t mean to upset this very proper person who was my mother. Evidently, parents don’t know everything. I felt a bit protective of her after that. My father was in New Orleans on a business trip, and we lived in a big house in a Boston suburb. With a household of eleven people and a dying child, my mother lived on overload. Dr. Joe called my father and told him to come home, “No, it’s not Abigail. It’s your wife I’m worried about.” I hung onto life by the barest thread, but the doctor was worried about my mother.  I don’t know whether my father took a plane or train. Even in 1947 with few passenger flights, I bet he took a plane to get home as soon as possible. I’m sure he didn’t care about the price, he never did, and flew home. Family was everything to him. Meanwhile, I’m still very weak and lying in bed. The whole household needed him home.

As I recovered, I knew something was different and very wrong with me. Sometime after the coma, probably a long time, I managed to walk the 25 feet to the bathroom. However, once there and seated on the toilet, I looked at my legs and arms. My legs from the knees on down to the ends of my toes were blue and trembled. Try as I might, I couldn’t get them to stop. My arms down to my fingertips were also blue and trembling. No matter how I wished or tried to control them, I couldn’t get my legs, feet, hands, or arms to be still. I sat there time after time and again, dizzy, watching these strange events occur within me. I felt outside myself, a stranger observing my body. I didn’t dare stand up or move till it all stopped. I didn’t know how long it lasted. Probably minutes but it felt like hours.

Even as a five-year-old, I knew it was because something was wrong in my brain. I didn’t dare tell anyone. My parents worried enough about me as it was. My father’s three sisters had all died, two as infants, one as a five-year-old. I heard those stories many times. It felt too similar. No, scary as it was, I decided to keep my secret; after all, I was alive. Across the years, I experienced what I now know are hallucinations, illusions, losing consciousness, floating out of my body, and many other events.

Dr. Cardiology and Dr. Epileptology knew. They understood. Finally. Someone understood and agreed with my unspoken thoughts. Although I still felt amazement and wonderment, I knew they were right and that comforted me. They validated the past 73 years of my life. I didn’t cry, but I felt then, and still feel now five years later, immense gratitude and relief. Dr. Epileptology gave me that magic pill that helped my brain calm. I wrote both doctors a thank you note of my deep appreciation.

It truly has been a wonderful journey. Yes, I have had many very frightening moments. I’m driving and see elk on I-70 on one of the Kansas City entrance ramps. Or going down I-5 from Portland to Eugene, I see a fenced barnyard with cows and sheep in front of a red barn. I told myself to grip the steering wheel and keep the white lines where they belong. I only seemed to lose consciousness when in my house, never while driving (whew), at work (whew), and usually at night. If my husband was at work, I could call a friend till I calmed. If it was very bad, I called 911. I ended up in the ER more than once. One of the ER doctors wrote in his report, “non-specific neurological symptoms.” I understood that, but the local neurologist seemed too casual about it. No one figured it out and I was left with another nothing. I often suspected it being something neurological. Then I met my two Dr. Wonderfuls.

Here I sit five years after a diagnosis on the maximum dosage of medication with almost no weird events, and those I have last for seconds not hours or days. Instead of hundreds of epileptic moments a week, I now have less than ten a month. I feel normal…as long as I take the medication, which I do with uniform regularity.

At the beginning of my standard celeration chart—the name of this blue graph—epilepsy moments go up for a few months. This shows my process of learning what daily events occurred in my life that I had not known related to epilepsy—feeling out of my body, feeling nauseous for hours after eating wrong foods, falling over (an atonic seizure), and about a half a dozen more. The rest of the chart shows how helpful the medication is. Finally, I see the impact the loss of my last sibling has had on my life, even my brain signals did not connect as they should.

I would like to think that the recent loss of my last sibling did not influence my epilepsy events. But it did. A connection to my life lost. My only sibling still alive when I received the diagnosis, she understood and was so helpful in moving my thoughts about how to write the book. I’ve thought about this book for 40 years but had it going in the wrong direction. My friend, Susan, a fellow writer, parent, and psychiatrist, first told me the book was not a novel but a memoir. Wow. A couple years later, an agent told me “You’re a scientist. Write about that.” Wow. Then my friend, Mickey, and my sister, Hannah, told me to read Joyce’s Ulysses. I now steep myself in Ulysses and in Pavlov, Skinner, and Lindsley.

Other blogs about my epilepsy:
https://abigailbcalkin.com/personal_thoughts-past.htm (Nov. 2019)
The same post: https://abigailbcalkin.com/blog_fb/flashbacks_2019_11.htm (Nov. 2019)
https://abigailbcalkin.com/personal_thoughts-past.htm (Sept. 2021)
https://abigailbcalkin.com/blog_fb/flashbacks_2021_06.htm (June 2021)
https://abigailbcalkin.com/blog_fb/flashbacks_2022_08.htm (August 2022)