Epileptic Seizures - Nothing to Fear

         My late wife Linda was also my high school sweetheart. We met during my senior year (she was a junior), and it was virtually love at first sight. We confessed our love for each other after knowing each other only four weeks. Yet we knew in our hearts it was real. She was 16, I was 17.

         Five weeks later, as we headed to her house after seeing her Junior Class play, physically shaking and stammering, she summoned the courage to tell me she was an epileptic. I immediately told her, gently but firmly, that it made absolutely no difference in the way I felt about her. That I loved her too much to let it make a difference in our relationship.

         I had to repeat those words as we stood on her porch shortly thereafter, before she could even let herself begin to believe I’d really said them. Years of rejection by friends and classmates had sent her self-esteem to the bottom of an abyss. My words, once she believed them, took her to the mountaintop.

         I wanted to make very sure that she knew I was fully serious, both about my love for her, and the epilepsy never changing that love. So, one week after she told me, on the afternoon of my senior prom, I asked her to marry me. Her squeal of “YES!” echoed through the school halls.

         She graduated a year later, and we were married a year after that, in Newport, Ky. Both of us were 19.

         I didn’t experience many of her seizures right away, since she was only having about 3-5 a year. During the first six months of our marriage, she had two seizures around me. I was scared to death at first, just like anyone else would have been. But the difference between me and anyone else was simply that I loved her too much to let the fear get the best of me. The first ones were naturally the hardest to deal with, but as you’ll see below, I quickly learned that the seizures are actually nothing to be afraid of. Now, it’s time to show that fact to the world, so others will give epileptics a bigger, better chance to live a normal life. Please read this carefully and you’ll see why there’s really nothing to be afraid of on the very rare occasion that an epileptic might have a seizure when you happen to be present. It should be noted that not all epileptic seizures will be exactly the same. Physical movements will vary with each individual. But the basic principle still stands: there is nothing to be afraid of.



         I will answer any and all inquiries on this subject. That is how important it is. To me, and to those like Linda who simply want to be treated the same way in their daily life as any of us expects to be treated.



         At this point, Linda and I have been married for six months. The one or two seizures I’d experienced by then helped get me past the “first-time” fears that many people unfamiliar with them would have. I’ll quote from the autobiography I’ve written about our years together for the details:



         By the end of the first six months, we discovered that Linda didn't really want to work now, and when I admitted to feeling more and more apprehensive about her solo journeys and how it could start affecting my work, the combination clinched it. Two weeks later she was "just a housewife" and loving every minute of it. And that took care of a lot of the tension we had been feeling then, too. I just hadn't had much time to get really used to her seizures yet, and it showed.

         By that time, though, I had experienced a small number of her seizures, probably brought on by the pressures that had built to that point. (Patterns would develop over the years that indicated her biggest trigger for a seizure was emotional tension). Needless to say, back then, when one struck, I was petrified. All I could manage was to remember what she'd told me: "Don't try and stop me or anything. Just keep me from hurting myself and let me go through it. It's really easier on me that way."

         But, as always, the Lord watches over His children. Those early (in our marriage) seizures took place at safe times. When my participation was not needed in a life-saving maneuver, though I would have to step up quickly to prevent injuries to her, and, a few times, to save her life, later on in our marriage. But, initially, I had time to get used to her appearance, sounds, actions and recovery. (Remember? She’d said her appearance might scare me a little until I got used to it, and that’s why she’d hesitated to tell me everything the night of The Play.) When the latest seizure came, I was not nearly as startled, just a good bit nervous. My efforts to concentrate on exactly what was happening, for future reference, made it a relatively easy job to keep a cool enough head to handle the situation. This particular evening, we were seated in the living room, watching baseball. The Reds, of course.

         "Lin, do you think the Reds will win this game?"

         The response I got was the eerie, wavering yell she always brought forth as a seizure began. It started as a guttural moan, rising in pitch as it grew in volume, till it reached upper alto range, coming out at the top of her lungs. It all took place in about 7 seconds, though. I looked toward her chair just in time to see her head jerk to the left, and her eyes roll back into her head, just as the eyelids fluttered closed, and the yell stopped. I knew.

         As I ran toward her chair, her entire body had turned enough to the left that she fell to the floor, on her side. But her vigorous motions rolled her over onto her back immediately.

         "Keep cool, and learn," I admonished myself.

         She lay before me. Her arms, fully extended, were oscillating side to side, in unison. Against her body, then out about eight inches, and back again, fists clenched, fingers pointing toward the floor, the thumb side of each fist hitting her body each time her arms came back to her sides. Her legs, fully extended and feet together, were also moving, in unison with her arms. They'd rapidly raise 3-4 inches from the floor and fall back again. Her tongue was exactly where she had told me it would be; just barely sticking out between her teeth. Most epileptics "swallow their tongue" and therefore run the risk of suffocating unless someone nearby is thinking fast enough to insert a solid but safe object, such as a wallet, into their mouth to keep an air passage open. "Praise the Lord," I thought as I looked on. "At least that'll never happen to her." The position of her mouth, though, with the tongue and all, gave an eerie sound to her now rapid breathing. Like a child learning how to give a classmate a raspberry. It was then that I noticed that it was because she didn't swallow ANYTHING at these times, let alone her tongue. She was slobbering like a baby.

         The nervousness now gone completely, I got down to even more detail in my observations. Her eyes were rolling around like billiard balls underneath those closed lids. And her teeth were tightly clenched on that tongue. I tried to pry her mouth open to free it. That was when I discovered the extent of the muscle action she went through every time. Total exertion. Iron grip. Yet she didn't feel any pain from the "tongue trap". I tried to open a fist. Same enormous muscle contraction. "Every muscle in her body's like that," I thought, fascinated.

         I sat down on the floor nearby. Alert. Watching. Learning. And ready if I had to do something in a hurry. Soon the physical motion stopped, the muscles relaxed. How long was the physical seizure? About 15-25 seconds. Now she just lay there, "sleeping it off", as she said she would. “Phase II,” I thought, quietly. Her tongue had gone back inside her mouth, and her lips were closed. She breathed heavily, snoring loudly. Inhaling through her nose (SNORE!!), then exhaling through her mouth (the wet raspberry again). Total time for "sleeping it off"? About 10-15 minutes.

         She didn't tell me about THIS!" I said, humorously exasperated at what I encountered as she began to come to. “Phase III. But obviously, she couldn't have told me, 'cos she doesn't know everything that happens." (I was to realize later, through plain old common sense, that while all Grand Mal seizures may have their similarities, each individual's reactions during and after a seizure would be unique to them.)

         She began whining like a baby as she lay on the floor. I soon discovered that stroking her head, as you would a baby, would calm her down and the whining would stop. "Interesting. Even the human mind must resort to animal instinct when nothing else remains," I thought, a trifle more curious and fascinated. When I stopped stroking her, the whining resumed. So I didn't stop till she began to become obviously conscious. Or so I thought. Span of time on whining? About 45-60 seconds. (As I learned more about her seizures, I realized that the whining was probably the first indication of the massive headache she would get after every seizure. Since she wasn't conscious yet, animal instinct used the only outlet available to react to the pain - making her whine like any other animal does when in pain.)

         “Phase III,” I repeated quietly as her eyes open up. I rememboer thinking, "Does she recognize me?" Eyes are expressionless. Can't tell. Noticed, though, that she will follow my finger with those eyes. She tries to speak, but sounds very drunk. Words are totally slurred and her voice trails in and out.

         "What time is it?"

         I tell her. She notices she's slobbered quite a bit and makes an effort to wipe it away on her left sleeve. As with speech, motor control sloppy. No coordination.

         "What time is it?"

         Time lapse since first asked, about 15-30 seconds. “Wonderful,” I thought lovingly. I felt myself smiling, and feeling every bit of the love we shared. “Recycling and starting over. No memory retention,” I said silently. I tell her the time.

         "My head aches."

         "I know."

         "You know?"

         "Yeah. You had a seizure."

         "I did?"

         "Yep."

         A little light crying now. I expected that. She can't get her driver's license without being seizure-free for at least 1 year. And every time she has one, she's back to square one in that race.

         "I'm sorry, honey. Nothing I could do."

         "I know, Jim."

         I thought, "Well, she knows me now, whether she did before or not. But her speech is still extremely slurred. Better keep an eye out."

         Phase IV. She started to get up off the floor. Almost fell on her face. I grabbed her and got her straightened up. I remembered what she'd said about "being a klutz" after one of these things. "Where you going?"

         "Gotta go......the bathroom."

         I guided her in and got her settled. Had to. She'd always start to fall forward as she'd bend over to sit down.

         That task taken care of, she got up. I steadied her again. "Why don't you lay down for awhile? I'll get you some aspirin for your headache."

         "How'd you know I have a headache? Did I have a seizure?"

         "Swell," I thought lovingly. "Memory still shot." "Yes, honey. About 10 minutes ago."

         "Oh, shit!" she muttered as the crying returned.

         I knew she was thinking about the license again. I got her onto the bed and went for the aspirin. Brought the water in a plastic glass. "Here, sweetheart."

         "Thanks. Ouch. Damn. Bit my tongue again. How bad is it?"

         She stuck it out at me. "Nice red and white spot dead center on the tip," I said. "You'll feel that one for a couple days."

         "Nuts."

         She took the three aspirin and gave me the glass. I kissed her gently and closed the bedroom door. "Now she'll really sleep it off," I said quietly. "Phase V." I went into the living room and sat down to read the paper.

         Four to five hours later the bedroom door opened and she came out slowly, holding her aching head in both hands, and waiting for her now overly sensitive eyes to adjust to the light. She sat down on the couch and carefully leaned back.

         "Oh, my head. I had a seizure, didn't I?"

         Her speech was normal, now. Only the aching head and a touch of klutz remained. "Yep."

         “Damn. Back to zero on the license. But even THAT’S not as bad as these headaches. I'm gonna get some aspirin."

         "You already took 'em."

         "I did?"

         "Yeah. I gave 'em to you right before you hit the hay. All three of 'em."

         "Thanks."

         "Think nothing of it, honey. I love you." I felt she’d want to hear those words just then.

         She quietly smiled at me, and closed her eyes for a while.



         As time passed and I became more familiar with her seizures, and therefore more comfortable dealing with them, I became quite adept at protecting her if I was around when one struck. At times I even got a touch creative. Here’s an example, again from the autobiography, from a little later in our marriage, in late 1973:



         “One night we were standing in the living room, near the middle of that room, both of us intending to sit down for a nice quiet evening. The seizure hit while she was still on her feet. After our five years of marriage I’d become thoroughly comfortable where dealing with her seizures was concerned. I put both arms out as if to embrace her but kept them about 8-12 inches away from her rapidly moving body so I didn’t interfere in any way with the seizure itself. Those five years had more than proven to me, first hand, what she had meant from the night she first told me about it being easier on her to just let her go through it. Any attempt to restrain her would simply put her in a position of going through massively powerful isometric exercises since her muscles would still contract. The end result would have meant sore muscles for days if not a sprain or two. In this latest instance, as always, she was stiff as a board, arms at her sides, like all the others. Difference this time was that since she was standing up when it hit, her legs couldn’t go up and down as they would if she were on her back. With her weight on them they simply gave her body the appearance of being hit by a jolt of electricity. That kind of rapid, jerky motion.

         I kept my arms in place because I had plans for when she stopped moving. I just didn’t know which way she would fall when the motion stopped. 30-45 seconds later, she stopped the physical part of the seizure. As soon as I saw her start to lean backwards, I said lovingly, even though she couldn’t hear me, “Nope, wrong direction, sweetheart,” and gave her a gentle but firm push on her left side, just below the shoulder. That sent her right over into the center of the couch. I followed her over there, and as her upper body bounced off the back of the couch I caught her so she wouldn’t fall on the floor, laid her down on the couch, then reached down, picked up her feet and placed her legs straight out so she was laying in a normal position on the couch as if she was taking a snooze.”



         As you can see from these descriptions, even the major seizures, called “Grand Mal”, aren’t that violent. Hopefully those of you who read this will remember that if and when someone has a seizure when you’re nearby. If you can, you’ll save yourself a good bit of unnecessary anxiety, and the person having the seizure a good bit of embarrassment. Please think about it.



         As I said at the start of this article, I will answer any and all inquiries on this subject. That is how important it is. To me, and to those like Linda who simply want to be treated the same way in their daily life as any of us expects to be treated.