Frank's

Issue #2
June 1, 2000

    The most important news this month is that the National Institutes of Health will sponsor a State of the Science conference on CFS/CFIDS October 23 and 24 (Monday and Tuesday) in a yet to be named Washington, D.C. hotel.  Patients and advocates are welcome to attend.  You can receive further information about location and agenda by subscribing to the NIH announcement list devoted to this topic.  Do this by sending an e-mail to "Dean, Donna (OD)" <DeanD1@OD.NIH.GOV>  asking to be added to the "DHHS CFS Coordinating Committee" announcement list.  These announcements also go to the Chronic Fatigue Syndrome and Fibromyalgia Information Exchange (CoCure) list.

    This conference will re-focus research efforts more productively and also produce some pressure for greater funding.  I will attend and plan to write in an issue of Frank's about any aspects of the conference having to do with children, adolescents, and young adults.

    After reading my last newsletter a reader from Australia wrote in about a child with CFS whom she had known and tried to help but who committed suicide-- in 1963!  I too have been haunted by such a case.  I've written about it below (changing a few details to hide identities).
 
 

CHRISTY

A CFS Sermon

    Call her Christy.  Ishmael would fit.  She was an outcast.

    She was the youngest of four sisters.  I knew her oldest sister first, when Christy herself was a toddler. Ruby cut her wrists twice, shot her step-brother in the face with a pellet gun, kicked out a store-front window.  I sent her to Crownsville, which was where Maryland sent crazy juveniles in those days.  Ruby liked it there, didn’t want to leave.

    The next two sisters also grew up out of control like violent weeds.  They lived on Black Dog Alley in a trailer park that was a version of Hell—two-thirds run-down, almost uninhabitable trailers that were homes to peaceful working poor people who couldn't afford better, one-third trailers seriously uninhabitable but habitated nonetheless by families unwelcome elsewhere, almost all of them incapacitated by drug addiction, alcoholism, and chronic abuse of everybody by everybody else.  Christy’s family was the one-third kind.  In her younger days the mother had been in jail for prostitution and drug possession.  Now she worked, give her that.  Step-Dad worked only occasionally.  The rest of the time he was drunk.  The kids got slapped around a lot. People claimed to know for a fact that Angie, second oldest and the most attractive, had more than once been traded out for drugs.  But none of them would testify.  And none of the kids would talk.  Bruises?  "I fell down."  Black eye?  "I ran into a door knob."

    Two of them went ballistic in school.  Angie threw chairs, turned over desks, drove a whole classroom out into the halls.  It took three police to carry her out of there, and she broke the thumb on one of them.  A couple of years later the next in line, Trixie, picked up a knife from the cafeteria and locked herself into a vice-principal’s windowless office, claiming she was going to cut her throat.  When the staff got the door unlocked Trixie stood there with the point of the knife denting her throat.  "Come on," she said,  "Just come on.  Just come one step closer, see what happens!"

    I was covering schools for emergencies in those days.  I got called.  I came to the middle school.  I’d spoken to Trixie briefly while she hung around the ER waiting room when we were sending Angie off.  That’s all I knew of her.

    There were about twenty people crowded around that door, which was in the hallway opposite the office.  I had to push through them to get to the door.  I opened it a little, just enough to peer in.  Trixie put the knife up to her throat, her fist white knuckled around the haft.  "Come on!" she said.

    "I need to sit down," I said, and shoved a chair into the room through the cracked door.  It was a little school chair, the kind students sit on at their desks.  I’d dragged it behind me through the crowd.

    She looked at me like I was crazy.

    I felt maybe I was crazy.  I was scared.  I thought she might kill herself or me or both of us.  But all those people were crowded around the door expecting me to do something.  This was all I could think of.

    "I’m sitting in that chair," I told her.

    She backed up a little, the knife still at her throat.

    I squeezed through the door, closed it behind me, sat. Eventually we worked it out.

    "You fucking jack-off fagot son of an asshole!" her mother screamed at me later, at the ER, because we were sending Angie away.  She was just starting to get wound up so we had to call security.

    Christy was different.  Maybe she was like her father.  I never knew any of the fathers.  She was peaceful and law-abiding.  She didn’t curse.  She didn’t fight or steal.  She didn’t use drugs or drink.  "That stuff makes me sick," she told me.

    She was a kind of homeless that I’ve seen some other times but you don’t much hear about.  When she got to be about 12 all the other kids were gone, either raising their own hellish families or locked up for the duration.  Mom really didn’t want Christy around anymore.  This sober child cramped her style.  So she spent a week or so with her aunt, the next few days with her cousin, a long weekend with a friend from school.  Then home a few days, maybe, until off again to somewhere else.  "It’s all right," she’d say. "I don’t like it home anyway."

    Christy was a thin, bony, pasty-faced washed-out blonde with pale blue eyes that looked right at you but didn’t seem to say anything.  Her clothes were clean but old, hand-me-downs from her sisters, washed too many times, faded, color gone out of them just like it seemed out of her.  She could have been the poster girl for poor white trash.  She moved slowly.  She didn’t seem very interested in anything.  She didn’t have much to say.  But she had some sort of mute appeal, like a sick rabbit.  She’d huddle near you, as if she needed your warmth.  In middle school I didn’t notice her much but when she got to high school she hung around the nurse’s office a lot.  The nurse was energetic, warm and motherly, that was the real reason.  And by then Christ rarely felt able to do her school work, that was another reason.

    When I visited that school I’d run into her in the nurse’s office, or in the halls near there.  I’d try to talk to her.  I thought she was depressed.  But she wouldn’t say anything much.  "I’m all right," she’d say.  "I’m sick, that’s all. I got a cold."  She was polite.  She tried to be attentive.  I thought she wanted to tell me how it was with her but didn’t know how.  "I can’t think," she said.  "I think all right when I’m doing nothing.  But, like now, it’s just fuzzy. When I try to think much I get fuzzy."

    She always had a cold.  She had a reddened throat and sore glands.  She had aches and pains.  She was tired and sweaty and complained of feeling dizzy.  She couldn’t sleep, she said.  We’d try to get her to the doctor.  But Mom owed the doctor hundreds of dollars, she couldn’t go there anymore.  That was before the days of the Children’s Health Insurance Program, that now makes it possible to get Medicaid for children like this.

    Once in a while Christy would get so bad Mom would take her to the ER.  She owed the hospital thousands of dollars but they couldn’t make her pay what she didn’t have to start with, and she knew the law required them see her kids no matter how much she owed.

    "I just do it to keep the social services off me," she told me once.  But she did take her, occasionally.  "There’s nothing wrong with her," the ER docs would say, and send her home.

    "She’s lazy," her Mom told. "She don’t even care."

    Depressed, I still thought.  But it nagged me.  Something didn’t fit.

    She got to be 16 and missed more and more school.  "I don’t feel good enough," she said.  "I like school better’n home, it’s not that."  At some point Mom put her out for good.  She lived here and there.  I didn’t hear about her for a while.  One day I saw her in the Safeway.  She didn’t look clean.  "How are you doing?" I asked.  She shrugged.  That’s what she’d do.  No matter what you’d ask she’d shrug.  "I’m okay," she told me.  I couldn’t get anything else out of her.  I asked her to come see me at the clinic, assured her it wouldn’t cost anything.  "Maybe," she said.  "I don’t know. I don’t know it would do any good."

    "This slut Christy," a client said to me a week or so later, "I was with her last night.  She don’t even want drugs for it.  Just give her a place to spend the night, she’ll do anything.  Ain’t that the shit, how some people ain’t even shit?"

    I felt ill, hearing that. I still feel ill.

    A year or so later I started to learn about Chronic Fatigue Syndrome.  One day, out of the blue, I hooked it to Christy.  That was her "cold," her aches, her tiredness!

    I asked around, tried to find her.  I didn’t even know why.  It’s not that there was a treatment I could offer her, and even if there had been there was nobody to pay for it.

    But offering help counts for something.  So do understanding and sympathy.  We could have helped, at least a little.  If we’d known.

    "Haven’t seen her for a while," people said.

    "How the Hell I'd know where she is?" her Mom told me. "It’s not like she ever wrote me a letter."  That was the end of it.

    But it wasn't, because I think about her.  Every sick child I see reminds me, every case of CFS I hear about reminds me, every e-mail asking me about an undiagnosed illness reminds me. Christy is always there with her clean pale face empty of makeup, her very own stubby reddish-blonde eyelashes blinking, her mute blue eyes looking right into me.

    A young professional's illness?  A malady of the middle classes?

    Poor people get Chronic Fatigue Syndrome.  Crazy people get Chronic Fatigue Syndrome.  Nasty, unpleasant people, criminals and psychopaths, they get Chronic Fatigue Syndrome.  There are more than 800,000 adults cases of CFS in the United States, most of them undiagnosed and unsuspected.  Nobody has much of an idea how many juveniles cases there are.  Females do get it more than males but plenty of males have it.  Studies say black people get CFS as much as whites, and Hispanics get it more than either. In health stuff it usually seems most Republicans just don’t get it, but this they do get, same as Democrats.

    But that's just numbers.  Suffering isn't counted in numbers.  Suffering is one by one, no two alike.

    The year 2000 Christy would be 21, maybe 22.  Odds are she's dead.

    But she comes back in other bodies.  Look for her.
 
 

Copyright 2000 by Frank Albrecht.  This text may be downloaded for personal use.  Other uses are free but require permission.

My home page is For Parents of Sick and Worn-Out Children.