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Abigail B. Calkin

A Blog of Flashbacks

Powering My Way through Epilepsy Changes

June 2021

Last night I attended my second epilepsy meeting, a meeting in which everyone has epilepsy or is the parent of a child with the disorder. As I listened to the stories, I once again felt like an imposter. In spite of having epilepsy, I think of myself as an imposter because I’ve never had a tonic clonic seizure, the one people used to call a grand mal, the kind during which the person is unconscious and has tremors. Without the tonic clonic, therefore, so my conclusion goes, I don’t really have epilepsy. Furthermore, I walked around the planet for 73 years without knowing I had this disorder. With those pieces combined, how could I really have this? Along comes a reminder. This morning, I had the feeling I could just collapse to the floor. I knew I wouldn’t, though, because the medication saves me from that these days. Thank you, Levetiracetam, the generic name for Keppra. However, the truth is that I cannot always power my way through these episodes and the changes that come at me from all angles.

I determined I have 12 behaviors and perceptions that are not normal, whatever normal is. I list them here in no particular order.

  • light-headed
  • dizzy
  • out-of-body
  • illusions
  • natural highs
  • hallucinations
  • vertigo
  • extrasensory perceptions (ESP)
  • aura
  • mild tremors (usually not perceptible externally)
  • passing out
  • visible tremors

If one occurs for one to three seconds, I call it a moment. Sometimes a hallucination is even less than a second. Then it is a flash that causes me to turn my head to see, hear, or smell it better. I call it an episode when the duration is more than three seconds long.

My medication didn’t save me four weeks ago when I had six days in a row of lots of small moments and big episodes. Every time I turned at night, I awoke feeling the bed, room, or both in motion. Nothing wanted to stay still. The worst part was that the bed and the room weren’t always going in the same direction. Sometimes I seemed to float at a 35- to 45-degree angle. My body told me I had to hang on to something in order not to fall off when the room and every part of it shifted. Only because I grabbed onto something—the edge of the mattress, a pillow, or my husband—did I avoid falling off the bed, out of the room, or even off the planet. I used to think I just had a good imagination retained from when my second grade teacher told me if the planet didn’t spin as fast as it does, we, and everything, would fall off. Yes, I immediately pictured the planet slowing and everything on it whirling into space.

In the daytime of those six days last month, I had trouble hanging on to reality. When I taught my homeschooled grandson English, I was fine. For the minutes when I wasn’t fine, I could tell him that I needed to pause. When I drove, I was fine.

In the motel in the mornings or evenings of that week, I staggered around the room almost falling over as if I were drunk or on drugs. That was four weeks ago and it feels like it was just the other day.

One morning in the motel room, my husband sat by the window. I staggered coming around a corner, went wall to wall, grabbing onto anything for stability. Suddenly nothing helped. The room tipped sideways. I fell but caught myself against the bed, stood up only to fall again and again. Sitting down would have made sense, but I didn’t want to—I wanted everything to be fine.

“What’s wrong?”

“Epilepsy.” How could he not know that, I wondered. Right, I continued in my unquiet brain. This was not stateside surgery or the war zones of Vietnam or Desert Storm, and I didn’t have a tourniquetted limb that needed amputating. My intestines weren’t exposed. I didn’t have a sucking chest wound or shrapnel imbedded in my skull. Life is good. My husband’s calm behavior always lets me know it’s just another one of those series of moments clustered together and there’s no cause for worry. I like his calm responses to such situations. In the past he has responded saying, “Oh, I thought you weren’t breathing” or he has carried me to the sofa or caught me on the way down when I went unconscious.

During the epilepsy meeting last night, I learned these are known as cluster seizures. Ah, cluster. Yes, they hit me as a cluster, one right after another, perhaps with a pause of ten minutes between episodes. Once again, new information sideswiped me. I intended to watch the movie, Selma, after the meeting. Learning a new term for a type of my seizures followed by watching America in danger and police beating up marchers would depress me even more. Instead, I watched a few episodes of M.A.S.H. and laughed aloud a lot. There.

Mulling over more new information about my brain and me then laughing, I went to bed. I already knew about laughter in the operating room. For a while a nurse friend of Robert’s lived with us. Supper table conversations would appall most households, but tales of surgeries and doctors’, nurses’, and surgical techs’ behaviors often had us laughing. 

I’ve had cluster seizures in the past, but given that I didn’t even know I had epilepsy then, I paid them no mind, just another set of days to power my way through these odd thoughts, feelings, and behaviors. I even learned to call them part of my usual life. Must not have had enough sleep, I’m working too hard, doing too much. Wrong.

I continue to have difficulty accepting I have epilepsy—no tonic clonic seizures, no need for surgery, no diagnosis for 73 years. I still have my inner movies of those days and years of odd feelings, thoughts, hallucinations, and tell myself I’m fine, I’m fine; they’ll stop soon. There’s nothing wrong with me; I’m fine.

(Please see the November 2019 Flashbacks blog for more information.)

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