There was, occasionally, a benefit to a seizure. Here is one such moment.
| In October, 1977, having been laid off from my programming job due to a manufacturing strike at the company, I decided to try turning my hobby into a source of income. With the help of a real estate agent friend, I opened a piano repair shop on a shoestring budget and with no prior planning. For years I’d wanted to see if I could run my own business. So I took this opportunity to find out.|
On extremely rare occasions one of Linda’s seizures brought with it unexpected, sometimes humorous, but always unusual “side effects”, including some with a positive twist to them.
One of the service calls we got that first month the shop was open was what I would consider typical of what I anticipated getting during the fall and winter seasons.
“Jim, if it’s OK with you I’d like to ride along with you on this one. I’d like to see what you do to check these problems out,” Linda said as I hung up the shop phone after that call.
“Sure, honey. I wouldn't mind the company, either,” I said smiling.
“Oh, YOU!” she laughed, punching me with what had now become “the proverbial elbow”. She’d been doing that to me every time I even slightly embarrassed her with a remark that was even remotely intimate since we’d met. It got to the point where I would have been disappointed if she hadn't done it. We got in the car and headed out. The location was about 45 minutes into Kentucky.
Upon arrival, we were warmly greeted by the lady of the house and shown to the basement recreation room where the piano was ready and waiting for inspection.
The customer complaint was typical for the fall season: “It played fine all summer, but when we turned the furnace on this fall it quit in about a week. You have to pump the pedals so fast that you wear yourself out.”
Linda and I looked at each other and exchanged Mona Lisa smiles. We knew, but we wanted to confirm our suspicions before committing ourselves. Once the furnace had been turned on, the dry heat had taken most of the humidity out of the air, drying out the wood throughout the house, including the piano and the player mechanism, causing its wood to shrink microscopically. That meant that all the screws that hold the wooden joints together were now loose, and the joints were no longer air tight. And since vacuum flows from place to place within that mechanism by going through many of those joints, through channels in the wood, most of that vacuum was now leaking out of the mechanism, into the room. Hence, the person pumping the piano has to pedal even harder to try to make up for the vacuum that is being lost. Those joints simply needed to be tightened up again. And as I said, Linda and I wanted to be sure that was the case before committing ourselves. Minutes later the cover panels were removed and I had run the thing through a few basic maneuvers.
“Lin, honey, stand behind me and hold onto the bench, will you? I keep sliding back away from the piano on this tile floor.”
“I noticed that, Jim,” she chuckled as she got into position, her hands holding the back of the high-backed, special design bench on which I sat. I resumed my playing.
About a minute or so had elapsed when I felt the right side of the bench pulling right up off the floor, leaning me well to my left. “Hey, Squeek, what’re you trying to do, dump me on the floor?” I asked affectionately. She always liked to pick the unexpected times to tease me.
I stood up and turned around to see what she was up to. She had gone into a seizure. Somehow (we never did figure this one out) her mind always knew whether she was in a public or private place. “Private”, to her mind, for purposes of seizures only, was our home or a relative’s home. “Public” was anywhere else, like here. In public, she never let out that yell. Only in a family member’s home. All of her other reactions and motions were the same at all times. She had had an iron grip on that bench when she was upright. But then I stood up and turned around. With no resistance to her motion now, she immediately went toward the floor, flipping the bench as she fell. Only because of the angle of the bench to her body was it wrestled from that vice grip of hers.
I managed to grab her as she fell, and eased her to the floor so she didn’t pound her head too hard. As Linda continued to move about, the lady said she appreciated my calm manner, and asked me about the situation.
“Is she having an epileptic seizure?”
“Yes, she is,” I said in a calm, routine tone.
“How long will she be like that?”
“Just a few seconds, maybe a minute.” About 15-20 seconds after I said that, Linda went into “Phase II”. The lady and I got her up into a lounge chair, and as she slept it off, I went back to the piano and resumed answering her questions about Linda at the same time. “I’m not being insensitive,” I explained. “The best thing is to let her go through it and wake up naturally. If we tried to bring her out of it early, it would double the size of her headache. I’ve just learned some “tricks” of that trade over the years, too.”
“I understand,” our hostess said warmly. “How long will she sleep?”
“Maybe about 10 minutes or so. I’m sorry it startled you.”
“No, that’s all right. I hope you don’t mind my questions.”
“No, not at all. It’s a nice chance to help others understand.”
“Does she work with you in the shop?”
“Yes, and she’s also my wife.” I smiled inside. “Even after all these years it still feels good to say that. I’m still proud to have her by my side,” I said to myself. “I should tell her that when she wakes up. She knows how I feel but I haven’t thought to say it that way in quite a while.”
“Oh! That would explain your calm actions. You’ve been through this a lot?”
“Not as much as you might expect. She’s only having about 3 of them a year right now.”
“How long have you been married?”
“9 years this year.”
“Did she have it when you met?”
“Please don’t take this the wrong way, but I’d like to know. Did you know about it before you asked her to marry you?”
“Yes, I did, and as you can see it didn’t change my mind,” I said, knowing that would be the next question. I knew it would also prompt other questions, and I wanted the chance to enlighten her. Then she could tell others. Even if it was done out of curiosity, the word would slowly spread that there is no reason to fear someone who is an epileptic.
“That’s why I was wondering, yes. Um… didn’t it bother you at first?”
“Sure, because it wasn’t familiar to me. We all fear things we don’t understand; we all fear the unknown. But sometimes to get what we really want we have to face those fears head on. I knew little to nothing about epilepsy when she told me she had it, yet the moment she told me I also knew I loved her too much to let something like that change what I felt. That I wasn't going to give up the one I had fallen in love with just because she had a medical problem. That’s not love; that’s running away. I was just going to have to learn about it, and how to handle it; and I did,” I said calmly, finishing the piano repair at the same moment. I started pumping again to check it out, and it worked fine. I continued pumping to make sure. “And surprisingly, it’s not as scary or fearsome as people have been led to believe,” I continued. “That’s why I don’t mind answering your questions. It’s a chance to let people know that it’s not something to be afraid of.”
“I think she’s coming to,” the lady said. “Can I get her anything?”
“Three aspirin would help if you have them,” I said as I walked over and knelt by the lounge chair. I began stroking her head, explaining why as I went about the effort. Minutes later her eyes opened. They were expressionless, as usual, but this time she looked over, right at me. She had already noticed nothing around her looked familiar. I could tell. The look on her face was, “Where am I? What happened?” I kissed her wet lips. I didn’t hold it long because her breathing would take a minute to clear. But I made sure she felt it. I kept a close watch on her face, especially her eyes. For the first few minutes after a seizure, she is not able to speak or move; her facial expressions are her only means of communication.
She smiled, as best she could. That was how she told me, after each and every seizure if I was there, that she recognized me and that that fact would let her relax and be more patient with going through her recovery, because she knew I was there and would take care of her all the way through it. As many years as we’d been together, and as many times as I’d seen her come out of a seizure, I knew all the feeling of love, affection and appreciation that was behind that weak, little, lovable smile. And I let her know that I knew. She closed her eyes and dozed for a couple minutes. Then she started coming out of it, her speech very slurred as usual. Over our eleven years together I'd become pretty adept at understanding her slurred, often distorted words during the first hours following a seizure.
“Right here, sweetheart.” I kissed her again.
“Where are we?”
“On a service call in Kentucky.”
I picked up the aspirin and the glass. She was conscious enough to handle ‘em now. “Here, honey. Got the aspirin ready and waiting for you.” She took the aspirin. I helped her guide the glass. She was using two hands, but she still had to deal with the lack of detailed muscle control. I sat the glass on the table next to her chair.
“Thanks. Ouch. Bit it again, right?” Out came the tongue.
“You just rest there while I finish checking out the piano, then we’ll head home.”
“Okay. Sorry to be such a problem.”
“Hey – cut that out!” I lovingly barked. “You could never be a problem and you know it,” I said, smiling and kissing her again.
“No problem at all,” our hostess added. “I’m just glad you’re O.K.”
“Would you mind if we waited about another ten to twenty minutes before leaving? It will be a little bit before she’s coordinated enough to walk easily.”
“No, not at all. Would you mind another question or two?”
“No, not a problem,” I said as I smiled at Linda. She smiled back. I knew she could hear the conversation and just didn’t want to embarrass herself by trying to talk too much yet. She would need that long sleep before she’d have her speech back without sounding drunk.
“Is what I just saw her go through one of those ‘grand mal’ seizures, or a smaller one?
“Nope, that was grand mal, alright,” I said calmly.
“Well, then, you’re right. It wasn’t as scary as I’d thought it would be from all the talk you hear about those things. It wasn’t even very violent, was it?”
“No, it wasn’t,” I agreed. “Now not every epileptic that has grand mal seizures is going to go through the same type of motions, but regardless of that the basic idea is still the same. Follow me?”
“Yes, I do. Does the medication I’ve heard about help control the seizures?”
“Yes, it does. Dosage and effectiveness will vary between the individuals involved, and has to be closely gauged to each individual’s body weight, but the vast majority of epileptics do benefit very much from the medication.” [Author's Note: remember this is taking place in the 1970’s. Newer medications may be less restrictive.]
“Has she ever had a job of her own?”
“Definitely. A number of them, because it took her a while to find an employer who wasn’t harboring ‘old wives’ tales’, if you’ll pardon the expression, and being prejudiced about the problem. The first two or three jobs she had she lost as soon as she had a seizure at work. Naturally, they claimed that wasn’t the reason.” [Author's Note: Again the 1970’s. Before the laws against job discrimination, especially the Americans with Disabilities Act.] “Her most recent job, however, was a joy to both her and her boss. She liked the job and he liked her work. She was a secretary for a publishing company. It’s definitely good to hire an epileptic because they’ll have a serious dedication to their job that some more typical people, like you and I, may or may not have. Their job is important to them, and their seizures don’t take that much time away from their work. Problem is, there are still far too many businesses who don’t give them the chance.”
“Then why did she leave that last job?”
I looked lovingly at Linda and smiled. Still looking at her, I responded, “She did that for me.” Linda smiled. “Not because I’d asked her to, though. I admitted to her that I was concerned about the possibility of a seizure happening at the times she was between home and work, but then she told me that she didn’t really want to work any more. That she wanted to be home to make the best possible home for me that she could. I think maybe I need to explain one other thing for you to fully appreciate that statement. We were high school sweethearts, and I was the first guy to even give her a ‘second look’, if you know what I mean, probably because the seizures she had at school would always scare others away. As soon as we admitted we loved each other, and I asked her to marry me, she became fully committed to the relationship. She’s told me much more than once since that time that she will always be that devoted to me because it’s her way of thanking me for caring enough to love her in spite of the seizures. So, when she said she wanted to concentrate on making a home for me, and for us, I had to let her.” I lovingly looked at Lin again and smiled.
“Thank you, honey,” she said quietly, but audibly. Her voice was still a little slurred but not as much as earlier. “I love you, Jim,” she finished slowly, watching her pronunciation, and smiled.
“You know you don’t have to thank me, sweetheart,” I said warmly. “And another thing, darling,” I continued, not taking my loving eyes from hers, “I want to tell you something I should have said far more often before now. I thought of it again while the two of us were talking while you slept a bit ago. Linda, darling, even after nine years of marriage, I want you to know that I am still very, very proud to have you by my side as my wife. I love you.” I saw the tears building in her eyes, so I leaned down and kissed her.
“Thank you, Jim!” she said haltingly, but with the love obvious in her voice as she fought the slurred speech and the tears at the same time. I kissed her again and she just quietly smiled at me with that look of love she’d had the night of The Play. (Yes, “The Play”. That was our name for that special night when she found out I wasn’t going to walk away and leave her behind like all the others.) Even if I hadn’t been sure yet that she understood, that special look in her eyes told me I’d gotten my point across and had left no room for doubt. I smiled back at her.
“I see what you mean,” said our hostess as she fought to keep control of her own emotions after seeing and hearing our exchange. She finally succeeded. She began again. “I’m sorry. Umm… I think what you two obviously have between you is priceless. Don’t ever lose that. Um… I see what you mean, though. About the seizures, because I noticed her speech, and about the way she feels about you. That’s showing in her face, and in her eyes,” our hostess finished warmly. “Would you mind if I told a few others about you two and our discussion today?”
“Please do,” I said calmly. “As I said about answering your questions, I don’t mind because it’s a chance to help others understand. Feel free to tell anyone you like about this. It can only help. Just be prepared for an unexpected reaction from some people. There are still far too many out there who are prejudiced and won’t give epileptics a chance.”
“I will. Thanks for the warning. I may just find out from this who my real friends are. And I’m beginning to think that’s something I’d want to know anyway. I may even have an idea who one or two of ‘those people’ might be.”
“How do you feel, honey?”
“Pretty good now.” I noticed her speech was even clearer now, but still noticeable. She continued: “You know, Jim, I heard everything that went on during the seizure. I heard you explaining to her about how I’d come out of it O.K. and what to expect and all that. That’s never happened before. I tried to tell you when I first woke up but I couldn’t get my mouth to work.”
“Never happened at all before, huh?”
“Nope. That’s a funny feeling. Taking in everything around me and yet unable to respond to it, no matter how hard I tried.”
“Maybe we better tell Dr. Cardosi about this. It may help in some way.”
“Yeah. It sure can’t hurt anything.”
“Think you can walk OK, honey?” I asked.
“Yep,” she said, smiling. “You might have to steady me a little though, honey.”
“Sweetheart, as you’ve known for the last nine years, I don’t mind it one bit, because I like to be needed, and with you there’s no question about that,” I said as I helped her up from the lounge chair. The three of us walked to the door. My arm was around Linda’s waist at all times, and she leaned on me for balance since she hadn’t yet had that long sleep.
“Thanks for the repair job, and the education. What do I owe you?” our hostess asked.
“Let’s make it $40 even, I said. I’ll throw in a discount for your gracious hospitality.”
“It’s money well spent,” she said as she handed me two $20 bills. “In more ways than one. My thanks to both of you,” she said, smiling, as we walked to the car.
“You’re quite welcome, I said. “Thanks for asking the questions.”
“No problem,” she said. “Can I call you if I have other questions about this?”
“You certainly can,” I called back as I held the car door and helped Linda get in. “It would be a pleasure to answer any question you have.” I saw her smile at us as we backed out of her driveway and headed back to the shop. Linda had used the seat belt in the center of the seat so she could lay her head on my shoulder as we rode. She was asleep by the time we got there. (This was before the seat belt laws; she used it to help keep herself from having problems staying in a sitting position on turns, or leaning too far forward if I had to hit the brakes. She didn’t have enough muscle control back yet to be certain she could handle those moments unassisted.) When we arrived, I spread out one of our cushioned mattresses we used when we were laying underneath a baby grand, and she slept on that for the next couple hours or so, then was back working with the other three of us in the shop the rest of that day.
(She’d believed, rightfully, for three years by then that her seizures would never drive me away. And the resulting peace of mind that knowledge gave her opened up a whole new world for her. And after seeing how she had lived when we met, with all her fears, low self esteem and self confidence, and her introverted nature, it warmed my heart to see her so confident, asserting herself so well, and finally enjoying life. JAW 3/8/02)
(I would lose her just two and a half years later. At 9:45 PM on Monday, March 3, 1980, Linda had a seizure in our bathroom, striking her head on the tile wall by the tub. She died instantly. I would come home an hour and forty-five minutes later and find her slumped over the side of the tub, still fully clothed. The pain I felt that night, and for the next six months or more, was excruciating. We had been the center of each other's world, and we loved it that way. Yet, truth be known, I would not change even an instant of that moment when she went Home to be with our Lord. Why? For two VERY important reasons. First, she suffered absolutely no pain whatsoever at the end. We should all be that fortunate. That moment, for her, came while she was still in the first stage of a seizure, when she was still moving about and literally could feel nothing. And second, and most importantly, the outcome would have been the same whether the Lord simply called her Home - her mission here, as an angel, of leading me back to Him being complete, or if He asked her if she would be willing to come Home if it would ensure my full commitment to Him - we both had strong faith, but I was hesitant to relinquish full control of my life to Him. If He called her Home, she went out of love for, and obedience to Him. And if He asked her if she would be willing to come if it would ensure my full commitment to Him - which it did, she went out of love for me, and for Him. With our strong faith, I cannot fault her for either of those reasons, no matter which was the TRUE reason. JAW 2:37 AM, 01/01/2015)