Sorry I haven't posted anything in a while - I've been working nights a lot recently and it's surprising how disruptive something as simple as sleep-wake reversal is.
I've been trying to identify precisely what people mean when they say that somebody is a "typical" county hospital patient. It's usually said with a knowing look, a look which alerts you to the fact that the word is overdetermined; but just
how it is so has been a little elusive.
I admitted a woman last night whom I immediately recognized as "typical" (it's a property of this kind of category that we can deploy them long before we actually understand how they work.) Ms. A is a 50 year old lady who's here for shortness of breath. I can tell just by looking her up in one of our data systems that her case is not simple, because she has several discharge summaries and a confused forest of diagnoses attached to her name. I can quickly tell, at least, that she's 50 years old and definitely has diabetes and HIV, neither of which are very well controlled. Her last discharge summary is written in a tone of cold professionalism and describes numerous infractions of hospital rules and altercations with staff during her last stay. I'm already guessing that she lives under difficult circumstances, and that she will have a constellation of factors related to poverty as part of her presentation, i.e. malnutrition, neglect, lack of education, drug use, infectious disease, poor social support, inadequate living conditions.
As an aside, I am coming to think of this "constellation" as a discrete syndrome. Obviously the specific manifestations vary with environment, e.g. in the Midwest it's methamphetamine and in coastal California it's crack, but the conspiracy of self-sustaining pathologies that develop around people who fall below a certain socioeconomic bracket are pretty consistent. I think it deserves an eponym, but I'm struggling to find a good one - part of the problem being, no doubt, the dearth of potential candidates who are famous for being impoverished and brutalized by pedestrian circumstance. Whoever submits the winning proposal can be co-author on the article I'll be submitting to the New England Journal of Medicine describing my new syndrome. The provisional diagnostic checklist is:
Syndrome X is present when two or more major and two or more minor criteria, or five or more minor criteria without major criteria, are met:
Major Criteria:
- Poverty
- Education less than or equal to twelfth grade
- Chronic Disease
Minor Criteria:
- Membership in a persecuted ethnic minority
- Anxiety and/or depression
- Alcohol or drug dependence
- Other psychiatric problems
- Dearth of family relationships or other durable social connections
- Unstable housing
- Lack of marketable skills
- Childhood sexual and/or physical abuse
Somehow I doubt it will get published, except maybe in the Christmas issue of the BMJ. On purely semantic grounds these criteria are actually a lot more specific than those by which we diagnose many conditions that insurance companies will actually fund treatment for like, say, the Rome III criteria for irritable bowel syndrome. But a lot of time and effort goes in to maintaining the alleged distinction between the "medical" and the "social." If it were to break down, well, we would have serious problems - not least that the structure of late capitalist society would be exposed as inherently pathological - and we don't have the money to deal with the problems we
do acknowledge.
In any case, whatever we're going to call this medico-social syndrome, she has it. When I went to see her I found an emaciated woman with end-stage dentition lying in bed with her oxygen tube on the floor, breathing heavily and emitting grotesque coughs. A napkin dripping green sputum lay on the table beside her. She perked up a little after I put her oxygen back on. She was reticent at first, clearly somewhat suspicious of people with ID badges after her last, controversial stay in the hospital, but after a few minutes she loosened up and soon became impossible to interrupt. She told me a lot of things - notably that she lives with her daughter, who coordinates her care, and that her daughter has been gone for nine days. She also told me, with a twinge of guilt, that she is radically disobedient to her various health regimens when her daughter is gone.
"She buys me diabetic ice-cream," she rasped, "She might give me a cookie - just one. But when she leaves the room, I eat four or five."
She thinks about her HIV with deep shame and guilt - she says that her "blood is bad" and she still holds a deep grudge against the mother of the boy who gave it to her more than ten years ago, maintaining that she knew he had it but didn't tell her.
As she became more and more talkative I kept trying to slip in questions about her current symptoms, some of which elicited answers but many of which were swept away on her swelling monologue. Somehow, as part of some smalltalk gambit, the fact came up that I have two cats. This prompted her to tell me the following story:
Ms. A's daughter, years ago, had a kitten named "Kitch." Her daughter loved the kitten, and so did everybody else - "Kitch had more friends than
she did," she told me - and when Kitch was small, everything was fine. But then Kitch grew up, and she and her daughter moved to a different apartment, and Ms. A didn't want a cat living in it. Her daughter, however, smuggled Kitch in and managed to keep the cat in her room for a while before she was discovered. When the inevitable revelation came, Ms. A was furious and demanded that her daughter take Kitch back to the old apartment - although what the cat was supposed to do there, aside from rent the place itself, I couldn't figure out. After vain remonstrations, her daughter grudgingly complied. Ms. A repented shortly after her daughter left, realizing that she had been mad at
her, not the cat, but by the time she got in touch with her she had already deposited the animal in the old apartment and sulkily refused to return for it. The next day, Kitch was run over by a car and killed. Ms. A was devastated, and clearly still feels deeply ashamed of having indirectly caused the cat's death.
When this story started out I had two thoughts. First, I knew that the cat was going to die and that it would somehow be her fault. She had a wretched look of contrition that gave it away. It was a long story, and I spent the whole thing dreading the end and trying, despite myself, to predict
how the cat was going to die. Plunging from an open window? Killed by an enraged boyfriend? Drug overdose? Accidentally baked alive? Second, I wondered why she was spinning this prosaic but earnest yarn about a dead cat, when what I had asked her about was her cough.
In retrospect I think that, in fact, she
was trying to give me the full picture of her disease process that I was trying to elicit - I just didn't quite see how at the time. What I had asked her, essentially, was "how did you get to be like this?" Her answer was to tell me a story which typifies much of her life and probably felt resonant to her in the moment for that reason.
She feels guilt and shame about her chronic illness. The fact that HIV is one of her conditions may be a little bit of a red herring, since it appears to explain this. It is, after all, a disease of intense social stigma that
still is widely held (not least by Ms. A) to imply sexual transgression, and lots of people feel guilty about it. But diabetes can be equally freighted with self-loathing and implications of personal irresponsibility, since it is widely held to be a result of gluttony, and its progression indicates a failure on the part of the sufferer to take adequate control of their life, take their medications regularly, and stop eating so many cookies. Similar feelings attend obesity, and the whole category of "medication non-compliance," which some people appear to think is a diagnosis in and of itself, invests many other conditions with such feelings of moral inadequacy. She feels guilt and shame about her poverty as well - who wouldn't, in a society which tells us that the primary indicator of personal worth is financial success, and that such success is available to anybody with a little gumption and initiative? This is
America, after all. These feelings of personal contamination and inability (or "spoiled identity" as Erving Goffman put it,) attach to the things she wants and loves; things which are vitiated, for her, precisely by the circumstances that generate the feelings to begin with. Poor, sick people cannot have the things that everyone wants - the sick part is that they often feel that this is their fault for being poor and sick.
This dead cat story
is about her present illness, insofar as it's story is about the relationship in which one stands to objects of desire when one is poor, marginal, and diseased. While I might have liked her to give me a discrete history of bacterial pneumonia, she was giving me a more general narrative about how she's ended up as the kind of being that she is; through a million little tragedies like the idiotic death of her daughter's beloved pet. She was telling me about her ambivalence towards the things she loves, her wounded anxiety, about how difficult real happiness is to achieve in circumstances like hers, and about her pervasive sense that the objects of her desire are so fickle and potentially dangerous because she, with her "bad blood," is somehow poison. The things she loves and wants always either escape her or turn on her, and somehow it is always her fault. Maybe she poisons them by her very existence, by imparting some essence of her disease to them, or maybe she destroys them out of weakness in her frustration with other people, as she did Kitch - but one way or another, the story of her life is one of reaching for something everyone wants and many people have only to have it turn into strife, disease, and death.
This, I think she's saying, is why she has this pneumonia: because for her the pursuit and enjoyment of the objects of her desire has always been vitiated by her poverty, illness, and marginality; because everything has been like cat's death, or the lover who gave her AIDS; and because when her daughter left she ate too many cookies, and now, as always, pleasure has refracted into pain.
Typical.
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