Frank's
Issue #3
July 4, 2000Contents: I. Change the Name Workgroup.
II. Excerpts from Going Along Together, a CFS Novel.I. Change the Name Workgroup
The most significant CFS news this month is that a Change the Name Workgroup has been created at the National Institutes of Health. The composition of the group is as follows: John Herd, Leonard Jason, Ph.D., Daniel Kahn, M.D., Kim Kenney, Nancy Klimas, M.D., Charles Lapp, M.D., Carol Lavrich, Susan Levine, M.D., and Arthur Lawrence, Ph.D. Two members (Herd and Jason) have CFS. One (Lavrich) is the parent of a child with CFS. Herd and Lavrich are the patient representatives. Kenney is the Executive Director of the CFIDS Association of America. Jason is a psychologist has done distinguished research showing how common CFS is in the American population. Klimas, Levine, Lapp and (I think) Kahn are physicians who treat CFS and have been effective advocates for patients. Chuck Lapp also treats children with CFS. Dr. Lawrence, I presume, is from NIH.
The job facing this group is difficult. Chronic Fatigue Syndrome is not a good name for a serious illness. It lends itself to jokes, cartoons, and commercial exploitation (for instance, the beach resort that advertised curing it). It invites dumb comments like, "Oh, I guess you need to rest up a lot, hun?" But changing the name is difficult. Overall, the medical and scientific communities do not appreciate the need for change. They haven't lived with or experienced the problems with the name, so they don't get it. Another difficulty is finding a name that all interested groups can agree on-- patients, their advocates, the medical and scientific communities, and the various interested government agencies. If and when that is done, it takes years to get a change into the International Classification of Diseases (ICD)-- and without that the new name could not be used for insurance or billing purposes. But most doctors aren't going to tolerate a situation in which they put down one name on insurance papers but use another for all other purposes.
The patient and advocate communities have now achieved at least a limited consensus on the name Myalgic Encephalitis. Myalgia is muscle pain. An encephalitis is any disorder of the brain. This is a fairly accurate name. Brain disorder may or may not be at the root of CFS, but for sure it is part of the illness. And myalgia is pretty prominent in it too.
This name has one great advantage, its initials. "ME" already exists in the ICD. It stands for Myalgic Encephalomyelitis, the name used in British counties for an illness very similar to (perhaps the same as) CFS. Encephalomyelitis means inflammation of the brain, which is not present in CFS (nor in ME, for that matter). So this is not itself a good name. But a doctor can write "ME" as a diagnosis for an insurance company. If in his head that means "Myalgic Encephalitis" rather than "Myalgic Encephalomyelitis" who is to know-- or care?
I am wishing good luck to the Change the Name Workgroup.
II. Excerpts from Going Along Together, a CFS Novel
Those of your who have read my previous newsletters know I can write pretty well. What you may not know is that I have written a novel about CFS, Going Along Together. So far I can't find an agent for it, or get it published. Below is a portion of it that bears on the name problem.The year is about 1990. Wolfe is a psychologist, Barbara (who has CFS) a former client. Both are married. When Barbara was seeing Wolfe professionally he and she were strongly attracted to one another. But neither spoke of it and nothing happened. Now, several years later, Barbara has an emotional crisis and becomes suicidal. She phones Wolfe. He meets her in his office on a Saturday afternoon. Their passion explodes. They make love. The scene begins immediately afterward:
They lay together on the sofa. Barbara was crying.
"It's because I'm happy."
"You won't kill yourself now?"
"No. It's okay now. I'm fine. I’ll tell you about it."
They lay with their bodies pressed together, noses touching, mouths almost in contact, breathing each other’s exhalations.
"It’s like you’re in me now, you’re part of me," she said. "So it’s all right for you to know, it won’t make things worse than they are already."
"But I can’t talk seriously," she added, "with my pants off like this." She bent one knee, kicking up the leg and showing it still partially encased in jeans and black panty. "It’s not decent."
"Your top half looks pretty funny too," he told her. Barbara’s sweatshirt was bunched up under her arms and around the top of her chest, above her breasts. Her bra was up there too, unsnapped but not removed.
"Thanks," she told him, beginning to struggle upright so she could put herself back together.
But when she rose from the couch she staggered, half fell back down. Wolfe sat up, put his hand out to steady her. She sat back down still unclothed.
"Dizzy," she said. She broke into a profuse sweat. Her face was extraordinarily pale.
"I need to lie down a bit more," she said. Wolfe scrambled out of her way as she stretched out again, on her back, still mostly naked. He stood to put on his own clothes as he tried to imagine what was wrong.
It didn’t seem right to look straight at her when she was like this, both ill and bare. Averting his eyes he noticed her feet, ankles and calves were a dark purple. He stared.
"That happens all the time," she said, noticing his stare. "I don’t know why. Nobody understands this illness."
"I’m so sorry," he told her. He had been thinking her condition must be a result of guilty chagrin, of acute regret over the adultery they had committed. Now he recalled that she had an illness that made her tired.
"It’s the way I’ve been pushing myself the last couple of days," she told him. "I kind of expected it. But this is real bad." She put her fingers on her throat to take her pulse. Wolfe picked up her coat, which they had brushed to the floor in their passion. He tried to put it over her, to cover her apparently shameless nudity.
"No, no," she said, pushing the coat way. "I’m too hot as it is."
He stared at her body, at her breasts and pubis. He couldn’t help it. Then he looked away, embarrassed.
"Don’t worry about that," she said. "Worry about my pulse. It’s about 140. If I stood up it’d go astronomical. I don’t know how I’m going to get home."
"How can I help? " he asked. "Can I get you anything?"
This old office building had windows that opened. At her direction he shoved them open them as wide as he could. Cold permeated the room. He couldn’t believe that’s what she wanted. But she seemed pleased and asked for cola and something salty so he got stuff from machines in the hall. He sat down on the table next to her as she sipped and nibbled. She was still naked except for the sweatshirt and bra bunched around her neck and the underwear and jeans still clinging to one ankle. But she was still sweating.
"Aren’t you chilly?" he asked. "Are you sure it wouldn’t be better to cover up?"
"No, no. The air feels good. Here, put your hand on my arm."
She was soaking wet with sweat.
Wolfe got up, put on his coat, sat down again.
"Don’t think this is because we made love," she explained. "It’s not. I’ve been doing too much, that’s all. I’m supposed to pace myself and avoid stress. I need a lot of fluid and salt too, those help. But I’ve been so upset I haven’t been doing that either. So now I’m crashing."
"This is from the illness you had when I saw you before? This is what it does to you?"
"Sometimes worse, sometimes better" she answered. "But it’s got a name now. It’s called Chronic Fatigue Syndrome. Or CFIDS, sometimes. Chronic Fatigue Immune Dysfunction Syndrome."
"Yuppie Flu?" he burst out. "That’s what this is?"
He might as well have slapped her. Her face hardened, she stared at him a moment.
"Fuck you," she said then "if that’s what you think. The hell with you!" And she turned her head away, twisting her body so that she lay on her side facing the back of the couch. A dark, damp splotch of sweat showed on the cushion where she had lain.
He felt she had left the room, and would never return. In her place was a naked stranger, somebody else’s wife, suffering from an illness he hadn't known was real.
Two chapters later we get the end of this story.
Wolfe spoke to Barbara's back, to her remote and radiant bareness.
"When I knew you before," he explained, "we didn’t have the name, Chronic Fatigue Syndrome."
His voice held itself within the over controlled, calm and calming tones therapists use with upset clients. He didn’t want to sound like that now, so professional.
"Or Yuppie Flu, " he added.
Same voice! He was stuck in his habits.
"I was at a conference," he went on, "and somebody was talking about Chronic Fatigue Syndrome. He said it was a nervous condition overachievers get—Yuppie flu. I picked that up without thinking about it. I never connected it with you."
Silence.
"I know I should have connected," he concluded lamely. "That’s just what your doctor thought about you when he sent you to me, that you were a worn-out overachiever."
Nothing.
"I’m sorry," he said again.
Silence.
He stared at her back. There was nothing he could do. Not even cry—that would ask for pity. He wanted to scream. He sat still.
"I’m sick," Barbara said finally, almost in a whisper. She still faced away from him, still hadn’t moved. "You can see I’m sick. Do you think I made myself this way to be fashionable?"
"I’m sorry," he said again. "I wasn’t thinking."
"Now you’re seeing it," she said softly, "Chronic Fatigue Syndrome." She paused. "It’s SO MUCH FUN!" she suddenly screamed. He had been leaning close to her again, close to her back, to her skin. But her tone and the contorted reddening fury on what he could see of her face straightened him up. She put her whole body into yelling toward the wall, but at him too, almost lifting herself off the couch with her fury. "I’M SO FUCKING GLAD I’M SICK. OH, BOY, I GET TO TAKE ALL THIS TIME OFF AND I DON’T HAVE TO BE AN OVERACHIEVER ANYMORE! OH BOY! WELL SCREW YOU, SCREW ALL OF YOU!!"
She stopped, breathing hard and trembling.
He reached for her, touched her shoulder, but she pulled away and turned further from him. "Barbara," he pleaded, leaning forward again. There was no response.
Wolfe sat still like stone, afraid to move either closer or further away, afraid to speak, afraid to remain silent. This served him right, messing with a client. Or an ex-client. Something he should never have done. He’d felt so alone he’d done it anyway and now the payback was to be more alone than ever. He might as well cut his throat.
But he sat still and gradually Barbara breathed more slowly, her red face became pale. "I’m sorry," she said finally, still looking away. "You didn’t deserve that."
"Yeah," he said. "I do deserve it."
She looked around, turning, shifting her body toward him. She lay on her back and turned her face toward him as he leaned near her again. In spite of the cold beads of sweat stood on her forehead and her chest, even on her breasts and her belly.
"I run into a lot of that Yuppie stuff," she said. "Or things like, ‘Well, if so you tired, why don’t you take a nap?’ I’m usually polite about it. I hold it in."
"Oh, God," he said. "I’m so sorry!"
Barbara reached for his hands with both of hers, clasping them, four hands together. "It’s all right now," she said. "It’s fine."
"I thought I’d lost you," he told her.
"No, no," she said, shaking her head. She squeezed his hands. "It’s kind of good I got that out. Usually I don’t feel I can scream at people."
He smiled, tried to make light of it. "I didn’t even know you could use words like that," he said, "f- and s- words."
"I can’t," she admitted. "’Damn’ is as far as I usually let myself go."
"Not even ‘shit’?"
"Not even," she confessed, also smiling. Then turned thoughtful. "I try to base myself on the nice little girl I was once, and on how proper my mother tried to be when she could. Bad words didn’t fit into that."
"You’re too controlled?"
"Sometimes I think so."
Me too, Wolfe thought. He liked to think of himself as a rock. Chip off the old Army block, hardened, seen everything, nothing bothered him too much anymore he tried to believe. He knew every word of the Simon and Garfunkle song about I am a rock, and appreciated the irony, but he kept saying that to himself anyway.
She had a little smile again. "I guess I’m not so controlled with you—look at me!" she said, glancing down at her nakedness. "I can do anything with you, or say anything with you. Bad words or whatever. I can even say fuck. Fuck. Fuck!" She was laughing. Then her face went flat and serious and she looked him hard in the eye. "Fuck me," she told him.
"All right!" he said, forgetting his fears and scruples, sliding off his perch on the coffee table, kneeling by her and throwing himself ardently at her, kissing her lips..
"Oh, no, no, no," she said, pushing him way, laughing again. "Not now," she said. "I’m too sick. It won’t work. My heart is in it but my body won’t be able to perform. Later."
They keep waiting for Barbara to be well enough to drive home.
She asked him to open the windows again. Winter’s early darkness had fallen and greater cold than ever seeped in through the open windows. Wolfe put his coat back on and sat in a chair looking at professional journals while Barbara lay with her eyes closed, asleep so far as he could tell. She wouldn’t let him put a cover over her. "I’m still hot," she insisted. After an hour she still couldn’t stand without support for more than a moment. She thought about phoning her husband to come get her. But Ralph, thinking she had not yet returned from West Virginia, would have gone to his brother’s house to watch sports and let his sister-in-law feed him. "He won’t stay home when I’m not there," Barbara told Wolfe. She could have phoned Ralph at the brother’s house but then the whole family would find out why she called.
"None of them think I’m really sick," she said. "They think it’s put on. So I don’t like to get them involved."
"Does Ralph think you’re sick?" he asked.
"He’s knows I’m not making it up," Barbara explained. "But he still can’t accept the limitations I have. When I can’t do something with him, he gets upset. He just doesn’t know how to be idea about it."
That’s what she said, "be idea about it."
He blinked, his face showing confusion.
Barbara looked distressed. "Be idea about it," she repeated. Now she looked pained. "That’s not what I meant," she said. She bit her lip. "I meant," she went on, "be idea about it. Damn! I did it again." She bit her lip again. "I know the right word. I just can’t say it."
Wolfe felt frozen. He couldn’t understand what was wrong. Was she having some odd kind of seizure?
"Wait a minute," she said. She closed her eyes, seemed to struggle with herself. Finally she said, eyes still closed, "Be patient about it. That’s what I meant to say. Ralph doesn’t know how to be patient about it."
She opened her eyes and looked warily at him, as if afraid he might hurt her. She spoke very softly. "When I’m bad, like I am now," she explained, "a lot of times I can’t say the word I mean. I think I’ve said it but some other word pops out. Sometimes I don’t even know I’ve made a mistake until I notice people look at me funny. Or if I do hear what I’ve said, then I can’t think what was the right word. Or, like now, I do think of it but when I try to say it I get it wrong anyway. That’s happened at work, in meetings—everybody staring at me thinking I’m totally cracked. It’s so humiliating. Whenever it happens I want to crawl in a cave and hide."
"Everyone makes slips," he said. "People can understand that."
She shook her head. "It’s worse than a slip," she said. She looked almost as if she would cry. "It makes me feel like I’ve lost my mind. I’d rather sit there and pee on myself. My bladder, that’s just a bodily function. It’s not me! But my mind is me. I can’t stand to feel like I’m losing it."
"It’s not just this thing about finding the right word," she added. "Sometimes my brain won’t work right. Like I forget things. I’ll forget I put the roast in the oven and go out to the kitchen to do it. Or my mind gets fuzzy, like my head is full of cotton wool, and I can’t think. I’ll mix up numbers or get dates wrong or get confused about who does what job, even if it’s people I’ve worked with for years. Everybody with this illness gets this kind of stuff—brain fog, we call it."
"Anyway," she went on, "Ralph. He tries to help me but he gets resentful. He wouldn’t be happy coming up here to get me, especially after having to hear what his brother would say about it."
Wolfe would drive her, then. Going down to the car she leaned heavily on his arm. The effort made her sweat again. She stumbled on a curb, almost fell in spite of his support. "I’m sorry," she said. "Sometimes I can’t half see."
"It’s not your fault," he told her.
"Feels like it is," she commented.
She liked how the Beamer’s leather seats crinkled as you shifted your weight on them. "It reminds me of a saddle sound," she said. "Makes me feel like I’m a kid, riding a horse again." She put her seat as far back as it would go so she was almost lying down. As they drove she was silent, trying to gather strength. Snow started to fall again, lightly at first, then more heavily. It was colder and the snow was coming down fine and dry. But the streets were clear because the earlier accumulation had melted off the pavement or been plowed away. Windshield wipers and tires on wet roads were the sounds they heard as we went up Ritchie Highway in exceptionally light traffic.
"What kind of music do you like?" he asked.
She turned her head and smiled at him. "Country, of course. But I don’t care. Anything you like."
He clicked the radio. It was tuned to WJHU. That was before they went to a talk format. Something old was playing. Baroque, older than Mozart. He left it on, playing softly, its sound combining restfully with that of the wipers and the tires. She closed her eyes again.
As he parked she told him that she wouldn’t let him help her into the house. "I’m going to walk into my own damn house," she said, "on my own damn power."
Her sidewalk and steps were cleared of all but the most recent snow. "I have a neighbor who always does that for me," she explained. "It embarrasses me, really, because she’s an old, old woman. I should be doing for her. But she knows I’m pretty feeble so she just walks over and does it and I can’t very well stop her. Even if I told her not to she’d still do it, that’s what she’s like."
Wolfe had to help her pull herself up to standing from the BMW’s low slung seat. She stood next to the car holding onto him and laughing at her clumsiness. "Don’t be shocked if I have to crawl up the stairs to the porch," she told him.
"I couldn’t let you do that."
"It wouldn’t be the first time," she said. "Better crawl than fall, that’s how I figure it. And you don’t let me do things. If I want to let you help me, I’ll let you know!"
"You seem to be finding your words okay right now," he responded.
She nodded. "Now, yeah. That kind of stuff comes and goes. And please don’t look so worried. I’m not nearly as bad off as a lot of people who are sick this way. I’ll be fine tomorrow, I really will."
"Call me," he said, "tell me how you are."
"I don’t know," she said. "That’s so tempting. But maybe I should just keep you for emergencies."
"I’ll call you," he told her.
She looked somberly at him. "You’re married too," she said. "We’re both married."
They looked in silence into each other’s eyes. In the dim streetlight in the falling snow he couldn’t be sure if hers were glistening. He felt he couldn’t breathe. The world seemed to darken and fade away.
Suddenly she moved toward him, put her hands on his chest, leaned on him a little, stood on her tiptoes and kissed him on the cheek.
"I love you," he told her.
She smiled into his eyes, put her hand on his arm and squeezed it. "Bye," she said, and tottered away. She wove a little going up the sidewalk, then took the stairs up to the porch very slowly: step up, rest, step up, rest. She held the railing with both hands and used her arm strength to help herself up each riser. Crawling would have been safer and quicker, Wolfe realized.
She tottered across the five or six feet between the stairs and the door, falling forward and catching herself against the building. She got her key out, struggled with getting it into the lock, got it, opened the door, turned to him and waved, went in, shut the door behind her.
Copyright 2000 by Frank Albrecht. This text may be downloaded for personal use. It may also be quoted and may be forwarded in entirety or in part to other persons, provided it is attributed to me. Other uses are free but require permission.
If you look around on my home page you will find portions of Going Along Together, including the parts reproduced here.
My home page is For Parents of Sick and Worn-Out Children.