in the hall of mirrors

Symptomatic

Sorry I'm not blogging very often; still feeling a bit distant/reserved from the blog after the messes with TypePad; and still a bit uncomfortable with its new interface, which is technically better but more complicated (which is of course distracting from the business of actually writing).

An interesting discovery, an uncovering, at my doctor's appointment two and a half weeks ago, which I've been thinking about a lot. The HIV consultant told me that the arthritic symptoms in my right hand – and, more importantly, depression symptoms – are increasingly regarded as being typical of hepatitis C. And he prefaced all this by saying he had been nervous – did he say 'scared'? – about telling me all of this....

Very odd, to me, but illuminating. It is odd that he would not want to tell me all this – out of, I suppose, concerns about predisposing me to depression? many doctors think that way – given that I talk about symptoms, experiences, problems, quite bluntly, clearly, professionally, with him and with the medical students we give presentations to, and to the psychologist. I'm practically a professional (although of course I did become a 'difficult' patient for two months this spring over the questions of treatment and its implications).

Of course what this actually means is the opposite of what he was worried it would mean – the information is liberating, calming. Think about it: if depression is a common symptom of hepatitis C – not a result of worrying about the infection, but actually a result of the infection itself – then much of my depression since I was diagnosed with it in the fall of 2000, and possibly some time before (it is impossible to say when I was infected – it could be any time back to the late 1970s – and it is hard to say exactly when the virus might have had an effect on me before my first 'acute' presentation around November 2000) is not a function of my own weakness, my own loneliness, the gray skies of Newcastle, the isolations of Hong Kong and Newcastle, the disaster of the Australian career collapse: it is a symptom, something that happens in the body as a result of the infection.

Yes, of course: I know that the causes are all mixed in together, and that the gray dimness of my life since arriving here in 2002 has created a lot of grayness inside me. But the liberatory side of it, the sense of distancing and objectification of the insidious depression: the sense that it has a source which is outside of me – that is very freeing, a great relief, and it gives me a valuable place to stand, from which I can perhaps have more control over, more impact on, my own life.

Not that I'm interested in psychotropic drugs – I still don't trust them, though they're better than they used to be. But the sense that I can perhaps strive against depression (which, in any case, I haven't felt much this year) without striving against myself gives me extra strength....

***

And it is a rainy Sunday: but I would like to get work done. Before the alarm went off I'd already done some rather professionalized dream interpretation, using Johnson's Inner Work to help me.

And did I mention that I have this new, imagined, not completely impossible goal: that I could study to be a Jungian analyst?... although Jung liked for analysts to have already had other careers, and to be at least thirty years old or so, my age and problematic health prognoses may make this an implausible career aim. But the idea that I could do such a thing is rather fun to play with....

Ostern in Stuttgart (IV)

[Fourth – perhaps there will be five – in a series on my hospital experiences last month.]

[March 26 - 31]

Porträts (Wednesday)

As I lay in the hospital, recovering, with not many things happening on any given day (a status which will last for about a week, as it happens), I meet various nurses, young doctors, senior doctors, cleaners, and very occasionally orderlies; they become my circle, my network, my universe.

***

Melanie is young, with an extraordinarily fresh complexion and delicate coloring. Her face is pushed in a little too much around the nose to be quite beautiful, but the textures, the general air of angelic delicacy, that she projects makes one think of beauty, of feminity, of fragility. She is businesslike and direct about cleaning me, moving me, giving me shots and checking the status of my body and its attached tubes; but she is also, unusually, always in a hurry, always moving slightly faster than she should, if she’s going to get everything exactly right.

It’s odd, as though she has worked really hard to be a good nurse – and for the most part she is a good nurse; I trust her, and am always pleased to see her – but she gets things slightly wrong through speed, through haste. She is in fact an illustration of ‘more haste, less speed’ (a proverb that always makes me wonder if it can be reduced in some way – as my mother humorously reduced ‘waste not, want not’ to its logically required components as: ‘waste, want’, a refocusing I found increasingly witty over the passing years).

It does occur to me: could she possibly be going faster because she is slightly panicky at my HIV/HCV status? Everyone is, indeed has been, so utterly matter-of-fact and unintimidated by the fact that my blood and other secretions are poisonous, even in the days when they thought that the Chefarzt was infected. But this is probably paranoia on my part: chances are good that sweet, gentle Melanie is simply hampered by the pressures she has invented for herself out of nursing, out of the vast number of skills and pieces of knowledge that are demanded of any nurse, in that context that always seems to require all of one’s abilities all at once.

***

Later, I will talk to Joyce about Melanie’s delicate skin, and how it, and her behavior, reminds me of Theweleit’s image of the compassionate nurse, the White Woman who takes care of the Nazi soldiers. Theweleit’s Männerphantasien, an astounding book, pivots on the opposition between that White Woman and the Red Woman (the Communist, the gun-wielding revolutionary); Joyce remembers this somewhat differently, as ‘good’ and ‘bad’ Marian figures, but she can see what I mean by it all.

Melanie is too young to be very Marian, in any way at all; but, although I am in no way heterosexual, I perceive in my relationships with these nurses something that helps me understand the Theweleit a bit better – a frankly romantic, affectionate, loving quality; the intimacy of care, which could so easily (if one were bent that way) become loving, passionate, even sexual. I can see, a little better, how all those soldiers felt after the war; and why they married their nurses.

***

Speaking of medical personnel slightly overwhelmed by the way they see their jobs: young Dr Türck, a not unhandsome, high-strung young man, slightly swarthy but with beautifully clear skin and big dark eyes, always seems to be in a panic when he talks to the Chefarzt, as though he’s about to piss himself. It’s a bit like those moments in Scrubs – when a young but basically competent doctor is frantically trying to remember everything at once, in order to impress the savage Dr Cox. When Türck was alone with me, The Patient, asking questions about my insurance, he was in control, but slightly supercilious though perfectly polite: it is interesting to see how he experiences dynamics between people as a matter of hierarchy, control, power, and fear. Of course, he probably won’t grow into a mature doctor until he puts at least some of that behind him.

Incidentally, the other day, when the insurance administrators came to quiz me about my status, I told them that “young Dr Türck” was the one who knew what was going on with my case, and they should go ask him. They looked at me in confusion and some discomfort; after some wrangling, where I’d mentioned Türck several times, I realized that they had misunderstood, and emphasized that Türck was his name. And they suddenly relaxed…

Obviously, they’d thought I was making a clumsy and mildly racist identification: you may know that Turks are the complicating racial ‘other’ in Germany, and they are actually a large part of the population around Stuttgart (the airport had signs in three languages, and they aren’t the ones you expect – Turkish was first, then German, then French). If you were to try to translate the situation, it would be as though I had said Dr Black (meaning, as it happens, a young black doctor whose name was also Black), and they had heard it as, “you have to talk to that black doctor to get the information”. Hmm. It is, of course, in this German context, a slightly – well, awkward name; I wonder if he gets peculiar looks from time to time.

***

Melanie has a satellite, an even younger but much less able and very unintelligent nurse, whom I call in my head the Dingbat – she might be a trainee of some kind, although she has the same uniform as the others, at least as far as I can tell. She has a plump and friendly face with a big smile, black hair in a round, bouncy bob. Despite the smile, I am nervous when she comes in, as she has absolutely no idea what she’s doing and no idea whom to ask: when she moves the drip needle to a different place on my arm (and I’m thinking: do I dare ask her to get somebody else do this? – but Melanie is watching and clearly this is a learning setup for the Dingbat), she is obviously struggling to remember what she’s supposed to do. And yes, what she does hurts, kind of a lot (remember the line in Angels in America, when Belize says a drip can go in so smooth you’d think you were born with it, or alternatively it can feel like it’s pumping Drano…).

The next day when the Dingbat comes in alone, and I ask her to do something with the plastic bar with the button you use to ring for the nurses – it has been unwound and put out of my reach while someone gave me a shot – she wraps it round and round the triangular bar above my head, about twenty times to use up the slack, and leaves it hanging practically in my eyes. The next nurse in redoes it, with rapid professional moves, in the ‘correct’ three times around to hang in exactly the right place.

Fortunately, the Dingbat only comes in for two days out of my whole stay. Bless her clueless little heart…

***

And here is a most exquisite beauty, a young doctor with a lovely face severely framed by the kind of glasses that are meant to cause men to take her seriously, her hair artfully pulled back to show highlights of blonde and brown. Her last name is, as it happens, Italian, though she was clearly born here; she is perhaps my favorite of them all, strongly competent, proactive, charming without working at it, and even gently but assertively distressed when anything goes wrong. For my final week here, she will in fact be one of my most trusted sources of information and advice – almost more than the Chefarzt, who is of course mostly fairly preoccupied with larger matters.

I wish I could remember her name, though perhaps I shouldn’t put the last names of my caregivers on this blog (which is why I always call him the Chefarzt – although he has an interesting name, one which you know from famous automotive companies – which means something in Stuttgart, the great automotive center of Germany; and of course I had to tell you Türck’s last name, but hopefully that will never get back to him). Even when I first met her, her combination of a strict no-nonsense style with a sensed-rather-than-seen underlying sweetness was attractive; you could imagine that young male doctors would want to ask her out, but never dare to do so.

Her voice is husky, always a bit hoarse, though still a light girl’s voice. She takes my questions and requests seriously, as though I know what I’m talking about – always a great pleasure in medical care. One of the most startling moves she will make happens towards the end of my second week here, when she is changing my bandages: she, with precision and no repugnance, sniffs the length of the used bandage – sniffing to see if the pus is infected or not. It is a move that would alarm those of us who are not medical types; and it seems something she would have learned from the Chefarzt – a direct, realistic appraisal by smell, touch, feel, of what’s going on; the evident heritage of a country doctor, as accustomed to farmyards as to hospitals, and more trusting of his senses than of medical tests. It is peculiarly crude and delicate at the same time – and also strangely moving.

***

Speaking of the Chefarzt: I have already spoken of him a great deal, but perhaps it is possible to round out the portrait a bit.

(… round out… perhaps a poor choice of words; he is after all a fairly hefty guy…)

As I’ve mentioned, he is respected and somewhat feared; and the running joke is that he is a Landarzt, or country doctor (compare, perhaps, the famous stories under that title by Kafka and by Chekhov). Rough, brusque, given to broad strokes, traditional approaches, no coddling: the inhabitants of this part of Germany are often treated as rough, unlettered peasants – perhaps he’s seen as a part of that.

He treats me well – very well, in fact. From a few days after surgery, I started asking when I could go home; the Chefarzt started to get slightly irritated, turning to the other doctors who trail in his wake to comment sarcastically that I evidently wanted to be treated by English doctors. This seemed so odd to me that I didn’t even know how to respond – but when he visited the next day, I tried to correct his impression, telling him that it wasn’t that I didn’t like the care in Germany (which was of course excellent, if sometimes a bit chilly and/or disciplined, but of course I didn’t mention that), but just that – well – what I said was that I really, really wanted to recover in comfort back at home, because I wanted so much to be sleeping on the couch, making tea, and reading children’s books….

He apparently forgave me, after that.

***

After a few days, a much older nurse comes in: not friendly, and exaggeratedly Protestant… at first I’m a bit put off, and have the impression that she isn’t particularly interested in her job – is she someone who has gone into nursing after retirement, a sort of docent? She does have a different uniform than the others.

I am, however, entirely wrong, and at every level. Doris is The Head Nurse – the head nurse for this wing, or for the hospital? I don’t know; after all, I’ve been dealing with the head doctor for the entire hospital, she might well be head of everything. As I finally recognize her position, I reinterpret her style – she is brusque because she’s watching everything that all the other nurses do, handing out orders as does the Chefarzt, assuming they’ll be followed, not even bothering to look behind her. (This, then, is where Melanie’s nerves come from, as Türck’s come from the Chefarzt.)

In my last couple of days, I will manage to make friends with her, at least to some extent: I ask her for general advice on taking care of myself after I leave the hospital, etc.; and she warms, slightly, professionally, to this recognition of her superior status.

***

One of the strangest, at first most off-putting, of the nurses, is a dark-haired Eastern European woman with a voice like an antique brass instrument. And really, her voice is astounding: there is a loud buzz of frontal vowels, and all the consonants of her German are inevitably smashed together at the beginnings and endings of syllables; she is hard to understand but unmistakable, even from the other end of the hall – it is as though someone were suddenly playing a baritone krummhorn, a serpent, a sackbut, outside my closed door. Her family name starts with an H, has a J in it somewhere, and is to my eye completely alien, like Basque or Etruscan – I ask her where she is from; with a certain cautious hostility she says she is from Kosovo. I immediately say something vague but positive, and she relaxes; it is possible that she gets different reactions from different people these days.

Her face is mannish but not unattractive, her big dark eyes intelligent, the hair dark and heavy; in fact her hair, like her voice, is one of those things that must be seen – its texture has the strangeness of a Balkan epic, and when her hair hangs over her eyes it is as though it is made of swords. Heavy and straight, as though the strands are steel, it suggests the brutal nobility of those intricately related Slavic and Asian tribes that crowd into the spaces north of Greece.

It is really so remarkable what different materials make up the humans around us: my Chinese students in Hong Kong all had the same black Asian hair (except for the desperate few who tried to do something with henna, but they were always mostly unsuccessful, only achieving an ugly rusty variation on the norm); but this woman’s hair is like nothing I’ve never seen….

Her braying, brassy horn of a voice is comforting, if hard to understand; for she is competent, with the unfussy competence of battlefields, which she may actually know something about. Once I have negotiated those crucial seconds of finding out she’s Kosovan, without insulting her, or showing myself to be an enemy (I shudder to think what she would do to her enemies), she treats me as one of her own: and that, too, is moving.

***

And now, finishing writing this nearly two months later, the Kosovan is the one I remember best: at night, when she is sitting at the nurse’s station, talking quietly (as though a krummhorn were asked to play pianissimo) to the other nurse, in an empty, brightly lit space; because I am unable to sleep, as always (for it feels as though I never, ever, really sleep in the hospital, not for the whole two weeks); her presence, her powerful ability to handle any situation, is comforting. And so I walk, decently covered by the gray robe borrowed from Joyce, navigating my drip pole in intricate circles next to me, up and down past the nurses in the hall, getting a little exercise, in this unending dead center of the night.

Third, fourth, eighteenth thoughts

... on the other hand.. perhaps I should just get back to work. Or perhaps I really need more rest. Or...

Too many years of interest in psychology, including pop psychology, including of course any possible interpretation of my own psychology, and interest in many ideas of productivity and success, or happiness, or, well, I don't know, any peculiarly labeled combination of these and a number of loosely associated concepts – also all combined with an upbringing that echoed elements of Protestantism, Catholicism, and Orthodox cultures, all of which have strong and conflicting opinions about all these things – make every possible interpretation, every plan, every decision, all too easy to doubt.

And then there's the complex interface of health and living, of body vs. opinion: feeling better, then feeling worse; going for a long walk to a new bookstore, a pleasant small meal in a book-lined café around the corner, then walking home – but unfortunately climbing the steep stairs in the park near my house with a backpack full of books was a bad idea, since I managed to, once again, strain the muscles that were cut in the operation – my right abdomen aches now, rather a lot, again – which means I'm not really taking proper care of myself – but then, what exactly is proper care?...

Wanting to do the right thing: the right thing for the book(s), the right thing for my body, the right thing for my research, the right thing for colleagues who are waiting for work, the right thing for myself. But never being quite sure exactly what that right thing is – this confusion is typical of me, it's built into my nature; but it's still frustrating....

It's part of the system. Perhaps it is the system.

Ostern in Stuttgart (III)

[A somewhat delayed continuation of my tales of being in hospital; third of perhaps four or five parts. Hey, it amuses me.]

[March 24 – 27, 2008]

Terrible days (Monday/Tuesday)

It’s hard to explain the slightly crazed, exhausted misery of the two days, nearly three, after I was taken out of intensive care. There is, as it happens, a solid explanation – in fact there are two of them: the morphine ceased, and all the artificial well-being gained from it vanished; but, more importantly, and in direct contradiction to what all the nurses repeatedly told me, the side effects of another medication drove me mad.

That medication was simple enough – I don’t know exactly what it was, but a shot every four hours was meant to restart my digestive system, which had evidently been stopped dead in surgery. I’m assuming it was some kind of stimulant – something close to adrenaline? – in any case, although it was aimed at the muscles of my abdomen, it affected everything, my other muscles, my breathing, and worst of all my brain.

I became frantic, wound up, wired, obsessed though exhausted: especially for the two or three hours right after the shot, I would pant, my heart racing, and pluck at the sheets in vague and unfocused irritability. I couldn’t get up of course, or really do anything at all, so – well, you can imagine the craziness of the whole thing: like being in a tiger cage that didn’t exist, or one that was made completely out of my mind and muscles. I kept thinking about brainwashing, about hysteria, about torture, about simply going out of my mind: especially at night, at times, I burst into tears from not being able to relax, to stop this strange and endless buzzing.

The nurses said that the shots had no side effects, and that therefore I couldn’t be experiencing them. I wondered – was it really just me coming down from the morphine? But the experience was definitely worse right after each shot. Perhaps I was so weakened that I felt side effects that a healthy person wouldn’t notice….

Rather weirdly, two musical experiences made these days even more disturbingly charged. When I had opened my computer in the intensive care unit, I played some music for an hour or two on iTunes – and thought that my folk tracks would be the most relaxing, the most comforting. At the time, some of them were: but for some reason one of the last pieces I heard, a reel played by one of my colleagues at the university, which had three chords that went round and round and round in a rather frenetic way, got stuck in some part of my brain.

And so, a day or so later, with this strange medicine driving me nuts, those three chords showed up again: and no other music or other thoughts were clear, nothing else much happened inside my head – not for hours – just these three simple, shrill accordion chords, round and round and round and round and….

Madness.

On the second night, in an effort to derail my frantic mind from these chords, and from other Ohrwürme that struck me from hour to hour, I turned on the radio in my room. These weren’t general broadcast radio, but a hospital radio system with supposedly about twenty stations (I never got more than five or six); most of the time it focused on rather pompous talk radio in German, which of course didn’t interest me at all. After a few unfocused hours of occasionally turning on the radio and turning it off in exasperated boredom, at about 9 pm or so I noticed a woman’s voice announcing, veneration in her tone, Wagner’s Das Rheingold, conducted by Herbert von Karajan. Well, although I doubt I could have stood Die Walküre or Siegfried (neither of which I like, despite Walküre's popularity) in my frantic state of mind, Rheingold or maybe Götterdämmerung might have been just barely possible.

So I left it on… for perhaps an hour, perhaps two. (By the time I turned it off we were somewhere in scene 3, I think.) I’ve always loved Rheingold –the gimmicky, weird bits most of all (the spacey opening, the anvils, the dwarves and dragons, the Leitmotiven underlining every twist in the panicky arguments that make up such a lot of scene 2) – so this was potentially a pleasure. However, the performance itself was a bit frantic, a bit breathless and fragmented: or was that just me and my medicines? Joyce later said she thought the early Karajan recordings were probably like that, though – a bit too energetic and assertive for their own good. And, of course, as my favorite set pieces gave way to extended recitatives, or the tiresome arguments among the gods, my exhausted mind started battling with the whole….

In any case, it was a strange and short-term relief: for some parts of that hour or two, my mind had something to latch on to. I frankly hope that I never have to hear the Karajan versions again; but I’m grateful to Wagner for a little (strange, uncomfortable) relief – or at least some change of mental scenery – in the midst of all the torture.

Joyce

Through all of this, Joyce kept visiting, almost daily (I think she only missed one or two days of the thirteen that I was in hospital). She brought tea, books, and even downloaded some of her favorite podcasts onto a flash drive in the hope that I would enjoy something and relax. In the time of morphine, we chatted pleasantly, and she expressed surprise that I was in such a good mood. In the more frantic days, at first I was just quiet and uncommunicative; but at last I started to erupt in fretful complaints and demands, like a feverish child. I tried to explain that I was feeling very strange and unhappy from the medications, that it was hard to focus, hard to chat, hard to relax; at first she treated it lightly, assuming that I was still in control, but after a few minutes she realized that I really was not quite myself.

I kept complaining about the things she’d brought, that I’d never use, that the nurses kept moving around, that I felt responsible for; about my coat and suitcases, which were still left behind in another room on another floor; about the bits of things around the room that I couldn’t find, couldn’t reach, the earplugs, the slippers. I know I was a bit crazed and exasperating, especially after trying to be so urbane for the previous days; she began to accede to demands, which were contrary to anybody’s expectations – take home these books, take home the podcasts, I won’t enjoy them, I can’t keep watching to see that they go with me when I get moved.

All of this was about control, about certainty: just as I get fretful at home when things are out of place, so in this hospital room where my own things seemed scattered everywhere, hidden in drawers that might get used by another patient if one should be brought in (and even in different wings of the hospital), I was becoming frantic at the dissolution of systems, of control. Bless her, she went up and down stairs looking for my coat, dragged my suitcase downstairs, and took many things she had brought in back home. All to keep me from bursting into ridiculous tears….

A day or two later, when they no longer gave me shots and I was calm again, we could talk in a more civilized manner. She looked at me, appraisingly: you know, you were really wound up the last couple of days….

Plateau (Wednesday)

On the Wednesday following surgery, as I became more normal, and accustomed to my room, surroundings, nurses, and increasingly part of the hospital’s schedule (and, of course, as the entire hospital itself straggled back to its usual patterns after the long Easter weekend), I started to notice more of what was going on around me.

An annoying visit from a young and clueless administrative functionary about my health insurance – I told her it was taken care of by travel insurance, by Joyce, by two young doctors who had written down information over the weekend, and that I had no names, telephone numbers, or information; she knew nothing, and seemed to have no idea how to find out anything – developed into a more substantial visit the next day from an older woman, with the clueless youngster in tow. Fortunately, the experienced woman understood what to do, asked a few more questions, said it was all perfectly satisfactory, and went and handled everything; I started to appreciate what Joyce had said, that my travel insurance seemed really excellent. Even proactive, weirdly enough: she said that they called her.

Drips, tubes, catheters: only three remaining (the drip with saline and periodic pain medications and three different bottles of antibiotics in my arm, a tube to extract unused gall (bile?) going through my nose down to my stomach, and one well, you know where), but the hard part is disentangling them. As my digestion restarts, I need to get to the bathroom occasionally, then with more frequency; but turning my body over to pull myself up, to roll out of the bed, inevitably leaves the gall bag tangled with the urine bag, and/or both around the pole where the drip is. No amount of planning and bag-arranging seems to stop this….

And mild arguments about just where to inject the drip: during surgery, while I was anesthetized and couldn’t ask them to use my left hand (so my right hand would be free for meals, computer, and going to the bathroom), they put it in the back of my right hand; then two days later, when that spot was swollen and useless, moved it to my left hand; then another spot on the top of the left thumb, then back to the right forearm… five places over ten days, leaving my hands bruised and scabbed, echoing the growing number of bruises and black spots on my inner elbows, and scattered across my thighs from other shots against blood clots, and shots I didn’t even understand.

Parts of me have thus come to look like battlegrounds, battered and ruined, a range of dark bruise colors, none of them healing quickly. But worst of all are the backs of my hands: it’s not only the bruises and scabs, but they look so dry, wasted, ancient – of course, in Los Angeles, where plastic surgery is a cultural norm, they say: you can always tell from the backs of the hands. And mine look very old indeed: I know that in some ways I am younger than my age (one nurse is startled to hear that I’m fifty-one, and says she would have said ten years younger – but perhaps she’s comparing me with all the many patients in their seventies?), and also that in the past few years I’ve tended to think myself into being mentally older than my age (depression, lack of sex, loneliness). Now the backs of my hands are an accusation and a sign, emphasizing the sense that my different ages are fragmented across different parts of my body and mind, some younger and some older; and some frighteningly, pathetically aged.

(Hands... an interesting if rather intimate aspect comes to light: as I have needles in one hand or another, plus two other bags attached to me, and am starting to have diarrhea as my digestion starts to work again, the elaborate fuss over wiping myself gets a remarkable amount of attention. Right hand, left hand, easy or difficult, coordinated versus un-: I start thinking also of the intricacies of those cultures that define the left hand as the hand that wipes, and therefore never picks up food, or shakes hands, or does anything else. I asked Joyce at one point, as her husband is Turkish, whether this seemed to matter to him or to his relatives: but she said no, that modern Turks, who have all the toilet paper they need, don't worry so much about such things. I suspect that, on my visit to Bali in the late 1990s, I was entirely unaware of this distinction – and probably offended many of my hosts, especially at the big cremation festival, around the vast banquet table of rich and alien foods.)

After a few days, I notice something else that seems peculiar: several of my fingers, on the inside, have blisters, each getting harder. I can’t imagine where they might have come from, given that I’m barely moving and doing no kind of work, and of course lifting nothing at all. Finally, I see it, looking up at the triangular bar above me, the one I use to hoist myself into and out of bed – since my muscular center of gravity, the connection between legs and torso, is absolutely out of commission, and I can’t shift my body as a unit, but only in parts and with help: they are blisters from grabbing the bar and lifting my body up, every time I move.

Herr Silva (Thursday)

Something I’ve been obliquely dreading: after I have been alone in this room for three days, very late one night, at about three a.m., the nurses bring in another patient. Ah well, I knew this peace and quiet wasn’t going to last.

Herr Silva (not quite his name, but the name that most of the nurses have settled on for him, after transposing and subtracting some letters) is evidently a charming little man, like somebody’s grandfather. He is a tiny, elderly Brasilian who has spent years in Germany; he has a face like a dark dried apple, and has had fairly major surgery of some kind on his chest. He can’t say much, but at first seems pleasant, if groggy; I introduce myself, as though I am the host of this room. He explains to the young doctor’s questions that his family is scattered across the world, there is a brother in Saarbrücken but it’s no use to call him (which is odd, because Saarbrücken is a small city only about an hour away – perhaps they are seriously estranged).

The nurses, after fussing a bit, leave him alone, and it is just the two of us. After a while, he becomes agitated, apparently uncomfortable: he is in pain, and calls out to the nurses. I ring for him, they come and ask what’s the matter, and make sure his pain medication is running; after this happens twice, there is some discussion, the dark orderly from intensive care talks to them, plus a young doctor on call; and finally they wheel him back to intensive care. I am relieved at my restored peace, though I now know that at any time I could get a roommate of any kind: which makes me a bit, selfishly, uneasy….

The next afternoon, as I pick at my lunch (which, given my condition, consists of two pieces of white bread with jam and honey), Herr Silva is wheeled in again, nurses reorganize and fuss, move things around, and generally get him settled. At least as much as he can be settled: he seems even less conscious; and, after a while, he starts to moan, periodically, in pain. I don’t know quite what to do, if anything: asking him if I can ring for the nurses elicits no response – he seems too drugged, too out of it, to know what he wants.

After the moans have gone on for a while with some breathless pauses, he starts to mumble, repeating the same word: stab, stab – why is he saying that, in English? – or is it: ich starb? –

As he moans and talks more and more, getting gradually louder over half an hour or so, I finally understand: ich sterbe – I’m dying. He says this over and over, interspersed with more moaning. The nurses come in to check on him several times, and try to manage him, give him more pain medication, do what they can to calm him down. None of which, however, works well: they are giving him simple, rational instructions that appeal to his self-restraint, which might work well in a Lutheran context; but he is, of course, in a grandly operatic, Catholic, more highly colored fashion, projecting a world of torture, tragedy, misery. Although, by their medical standards, he is not in bad shape – and, of course, as nurses they can probably afford to have only so much empathy for pain, and not much at all for fear or despair – their feeble attempts to control the situation, to tame him and his cries, go nowhere.

After they have come in several times, then left, his moaned monologue gradually extends to phrases that sound like apocrypha extracted from some lost version of Woyzeck: ich sterbe, sterbe… wo ist das Messer [where is the knife?]….

Tragic, and a bit hard to listen to, even for me. I’m mostly uncomfortable rather than disturbed, however, and I try to help, talking to him and adjusting things for him; at this point I can get out of bed without too much trouble. He starts to pull at his drip, at his tubes (an impulse I can understand, as I’ve been resisting doing that myself); while moaning on about dying and knives, he pulls the drip pole over on himself. I move surprisingly quickly, finding myself at his side, preventing him from pulling on tubes, holding the tilting pole at an awkward angle, telling him again to calm down, pushing the button repeatedly for the nurse.

One nurse comes in, then another and a third, they cluck over the dramatic scene (we are like some baroque painting, arranged in a triangle – the horizontal body, the other leaning over, holding the pole at acute angle); they thank me for helping and hustle me back to bed: this has clearly caught their attention (finally), and one of them goes and gets the Chefarzt as the other two try to talk him down.

And now there is an entire grand operatic scena for the ensemble, two or three nurses, two young doctors, and the Chefarzt talking to Silva, discussing his case, telling him to calm down, trying to figure out what to do; the nurses point out that the Herr Professor (that is me, in case you have forgotten) helped out, pointing at me proudly as though I’m a child who has done something unusually mature that may be praised but shouldn't be overly encouraged… at which point the Chefarzt looks up and says, So why on earth is there another patient in this room?

I think: hmm, that’s kind of how I feel about all this.

The Chefarzt asks the nurses, are the other rooms on this hall full? They look at each other, uncomfortable, and one starts to explain: well, E 12 and E 14 are empty, and… But he is not interested in the details, and lays down the law: Silva should be alone in a room until he is less difficult to manage, and of course until he stops moaning, crying out, disturbing other patients.

The nurses move me rather than him, as I seem more manageable at this point. I am taken to the room where I will spend the next week, and in fact where I will be until I leave: a quiet room three doors down from Silva (whom I will hear moaning, crying out, at night, for several more nights, ringing down the hallways; and I am glad I’m not right next door to him). A room designed like the other, though its mirror image, and with an unused, even slightly abandoned, feel: there will be sunlight in the mornings across my bed.

And there will be no more roommates, for the rest of my time here: the Chefarzt has spoken. Although I haven’t paid for a single, once again, prestige and favoritism rule. And I am grateful for that….

For Vanessa: Reflections on Rubinstein

[A memorial concert was held for Vanessa Knights last Saturday, May 3, a bit more than thirteen months after her death at the age of 38. I gave the following speech, which includes excerpts from a book first published in 1985 and translated in 1989.]

If you'll allow me, I'm going to tell you about a book I like very much, which I shared with Vanessa, who told me that she liked it too. It’s by the famous Renate Rubinstein – someone you’ve probably never heard of: Rubinstein was a Dutch political columnist in the 60s, 70s and 80s, well known in Amsterdam and a feisty opponent in any argument (and it is clear that she loved arguments). When she was in her thirties, she was diagnosed with multiple sclerosis; after seven years of refusing to talk about it in public, she wrote this short book, Take It and Leave It: Aspects of Being Ill.

Rubinstein was evidently a tough, strong, even an aggressive person; there’s a lot of pride, frustration, and anger in this book – she doesn’t like being sick, doesn’t like being weakened or unable to do everything she plans to do, doesn’t like being patronized or helped or avoided or supported, or practically anything else it seems. But there’s also a lot of intelligence here, and when she finally reaches a kind of truce with her illness you believe her, because the insights are so hard-won.

This chapter is about her cat (this was, of course, a page Vanessa especially liked):

"In my movements, I have become a stranger to myself. I just cannot accept it as normal that they have slowed down so. The only one who really finds it perfectly normal and not worth bothering about is my cat. She used to run up the stairs ahead of me, with her tail in the air in the Siamese way. Now she climbs three stairs and sits down, awaiting my arrival. Then a further two, another wait, and so on until we have covered the sixteen stairs to the top.

I have the impression that she does not find this at all strange. She does not want to be alone; she wants to be with me. Like a human being she cares more about attention than about food, and she prefers my attention to that of the nice uncles and aunts who visit the house. This slowness of mine, which I find so disconcerting, makes no difference to her. To cats, human beings are probably just lumbering creatures who can't run. Only in the Cat Academy of Sciences should they be able to measure the difference in speed between one human being and another. The ordinary cat does not notice the difference and adapts without a sound." [p. 97]

This chapter, late in the book, is about ‘The Advantages of Being Ill’:

"It has come as a bit of a relief that limits are imposed by the superior force of my labor-intensive disease. The day is no longer an endless time span, but a modest capital that needs to be managed carefully: about four or five hours of activity in the morning, an afternoon in bed, then dinner and a short evening at half strength. Everything you do costs calculable energy: preparing food, eating food, writing letters, visiting your friends, going to a film, the garage, the hairdresser, the dentist, the dressmaker. I have my work cut out to keep things moving. Time is no longer the monster that must be killed; it has become a scarce commodity, a piece of good fortune to do something nice with. And there is much promise of pleasure: books, newspapers, television, records.... In short, my time, that is my life, has become precious....

Besides, there is something mysterious that happens despite yourself. After a period of grieving over what you can no longer do, you begin to emphasize what you can do. All the literature for the handicapped recommends this attitude and when you first read it, you think: what nonsense, how terribly sad all this is. But if you are lucky, the change comes about of its own accord and then it is of course not at all sad. I can still stand on my feet, I think, I can get up from my chair. I can get off my [electric wheelchair] and look at a painting in the museum standing up. And that fills me with an unjustified but gratifying pride....

Perhaps, I think, anything is better than nothing. Perhaps a moment arrives when only breathing is enough joy to want to continue living. Living." [pp. 120-2]

The last chapter of the book is called ‘Death’:

"Life is unjust, nature is unjust, all that is important is unjustly parcelled out (love, health, beauty, money). How fair death is in comparison. For one thing is certain: everybody dies. It is not as if you were the only one who will have to go, while all the others stay. Or, what would be even worse, a lottery, and some have a ticket with 'mortal' on it. With our acute awareness of the injustice of it all, we could have believed it. But it's not so, everybody lives for a while and then disappears forever.

True, some people live to be eighty and others don't reach thirty. But even those who reach eighty find that their lives have passed too quickly. Those thirty, eighty, hundred years, how little it all is in retrospect.... Once you realize that, you don't demand so much of the short time you are here, look around and disappear. You have taken it while it lasted; in the end you will leave it. It was all pure gain." [pp. 123-4]

All pure gain…

Of course, Vanessa wasn’t so cantankerous about her illness, about being too weak to do some things, about not feeling well, or about the prospect of living a shorter life than she should have. But she understood at a young age that it was ‘all pure gain’ – well before I first met her, now six years ago – she knew her prognosis ten years before her death, at the age of 28, even before she met and married David. It was clear that in her energetic approach to her work, her devotion to her marriage, her enjoyment of travel and research and dancing and food, her strong connections to her family, friends, colleagues, students, and even to her beloved cats, that she had already understood this most important thing. It might seem hard for us, because of course we can’t help but resent how short her life was – but then think how terrifically successful her life was, too. It really was, all, pure gain.

Thank you.

Missing

There are notes for two more long segments on my surgery and recovery, but I haven't had the energy to attack them yet. I hope I will finish them – not for your sake: it is entirely possible that the select company friends and strangers who read this blog are already tired of the topic – but for mine: that I can construct something of some length, made of fragments, envisioned while dazed in a hospital bed.

But right now, I'm (on the one hand) all right from the point of view of serious medical status, and (on the other) tired, groggy, queasy. Surprisingly disoriented, dizzy, out of it.

Sad dreams the past two days, about spending a great deal of energy moving into shabby, dark spaces in San Francisco, and another forgotten city: which might be seen as anxious previsions of my fading years when, not having quite overcome my career and financial errors, I am fading into the background, occupying the outward edge of livable spaces in cities that are increasingly crowded, expensive, and unable to help the new poor.

The reality, though there is much brightness and many kind thoughts in it, is perhaps creating some of this mood – I am currently missing my sister's memorial, which has, as my niece wanted it to, developed into a large, tearful/happy celebration involving relatives, neighbors, and at least two days of what seem to be pretty wonderful parties – there were a hundred and twenty expected yesterday at the house after the ceremony, on a hot day, in every room and out in the yard.

It is good to know that it's happening, and has gone so well... but it's tough that I couldn't attend, that I was in no condition to travel when it was required. All those people I remember with so much affection: and I can't help thinking there will never be a chance to see most of them again....

Ostern in Stuttgart (II)

[March 22-25, 2008]

Intensiv (Saturday/Sunday)

The two days following surgery are complex and not without their pleasures: these are the days immured in intensive care, the days of morphine. These are also the days of constant attention, many tubes and cables, an endless bleeping and ticking of machines, an excellent nurse or two, a charming young doctor; and the days when I open my computer and hear music, read e-mails, and even send out a message telling people what has happened to me. Significant: because after this the computer will be closed, as I will close down, for the better part of a week, tired, helpless, exasperated.

But first: the more highly colored experiences of intensive care. My operation took place within an hour or two of the full moon – on, of all days, Good Friday; it is Easter weekend – which, incidentally, means that far more hospital staff than usual are away from Friday through Sunday (Joyce later explains to me that Good Friday is the most important day of the year for Lutherans, and this is an assertively Lutheran hospital). However, despite the decimated ranks of doctors, nurses, and less prestigious staff, I am not badly cared for: I would say, in fact, that those who have stayed over this weekend, who have shown the workaholic dedication typical of medical personnel, are among the more skilled, the more matter-of-fact, the more educated. Indeed there seems to be a slight sense of relief on their parts, as though their more second-rate or even incompetent colleagues are away on holiday, and therefore gratifyingly absent: those who are left are happy to do all sorts of things themselves, knowing everything will therefore be done right.

A blonde nurse, perhaps in her thirties – whom I will not see again after I leave intensive care; was her name Claudia, or Charlotte? – washes me with gentle professionalism and speed; in fact everything she does is remarkably accomplished, remarkably able. Later in the week, in one of our many visiting-hour conversations, Joyce will remark on her work – she will say, in fact, remember that amazing nurse you had those first days? She really knew her stuff.

I wish I could remember more details of this woman who so impressed Joyce; but of course my attention those first days was contingent on the various hazinesses coming over me – those are in fact the days when I stumbled most over my varying ability in German: sometimes I could answer complicated questions and orders without a pause; but at other times, when tired or suddenly awakened from half-sleep, I could barely understand a word, and was treated more like the foreigner I am.

All these feelings and sensations, in intensive care, are softened, made more magical – no, not by the morphine, but – by the snow: because intermittently over this Easter weekend, so weirdly early by any calendar, a beautiful blanket of snow will drift over the quaintly German houses seen outside my window: like a holiday card; like a beautiful cliché.

In Praise of Cole Porter

I don’t assume the Chefarzt will spend much time with me – although, to my surprise, he will visit all but one of the days following my surgery – and I assume that I will see more of the apple-cheeked, friendly young male doctor. But, in intensive care and for a day or two afterward, I instead spend time with a friendly, astoundingly talkative young woman with dark hair – a very capable doctor, but also someone with many interests, who will talk about all of them without a lot of pauses. She gossips about the Chefarzt, showing the satirical adoration I will note in the other young doctors – the man is clearly vastly respected, and largely feared, and also, privately, seen as rather irritating; she loves to show off her able and idiomatic English, which occasionally leads to slight duels between us to display our abilities in each other’s language; we rattle on, competing for each other’s attention, friendlily and enthusiastically interrupting in a macaronic English-German that shifts back and forth across the linguistic map. Although occasionally, when I’m tired, I beg to sleep for a bit, for the most part I am happy, engaged, charmed – there is no better way to be distracted from the boredom and stress of the Krankenhaus, especially in the long evening and morning hours when Joyce cannot visit.

For instance, once the young doctor hears I am a Musikprofessor, and a former singer, she says she also sings – and promises me a copy of her home-made CD of herself covering Porter and Gershwin favorites. The next day, she brings the CD, in an orange plastic case; although the computer is open, I’m not up for hearing it at that moment, and lay it aside with her permission. (It will later go into a bag of books that Joyce will bring from home; when they go back after a few days, it goes with them – I assume it is now somewhere among her papers, so I can’t tell you what the young doctor did with those wonderful, fun songs – They Can’t Take That Away From Me, You’re The Top).

When I open the computer, I discover an open network: and I receive two hundred e-mails, all at once – masses of garbage; because for some reason the past five days have seen a surge in spam, plus there are many end-of-term e-mails from the university (as usual, before going away for Easter vacation, everyone and his sister has suddenly discovered that they have many terribly important announcements to make, to the department, to the school, to the faculty, to anybody who might possibly be convinced to pay attention). I spend some rather mentally blurry time that day and the next deleting and filing e-mails, which will boil down to five or six of actual interest – all of which, however, I am too tired to manage right now.

The young doctor/singer will tell me about this network connection: she explains that the hospital has no open network, but that one of the homes across the street has a network carelessly without a password – and that, in fact, my very room in intensive care, plus the storage room next to it, are the only places in this entire large multi-winged hospital where an open network can be found. She tells me with a touch of hilarity that, if the residents of that house knew how many hospital staff went into that storage room to check their e-mails, they would faint with shock…

Alerted to the need for expediency, I send an e-mail to my family telling them what is going on, in dry and reassuring terms (especially since I won’t be online for some time, creating panic seems foolish). And I send the same e-mail to the department, to a few crucial friends – one of whom will complain about being on a mailing list – a complaint that will later make me angry, when I am feeling my most tired and helpless. Isn’t it enough that I troubled to send a message from, of all places, intensive care?...

In any case, I like this doctor, her helpfulness and intelligence, her amusing conversation; she becomes an instant friend. And she is honest and direct, doesn’t pull any punches: when I am trying to think backwards – surgery Friday, entering hospital Thursday, flight Wednesday, pain starting Tuesday – I ask her, so when did my appendix actually, probably, burst? (I am getting adept with the awkward and slightly obscene-sounding phrase ‘perforierte Blinddarm’, which I will use with great frequency in the next ten days.) Apparently, at the point when the appendix bursts, a patient often feels briefly better, the pain decreases; so perhaps it was Wednesday evening, when I ate two rolls with cheese. So, I ask her, you don’t think it could have burst on Tuesday evening?

No, she says, if it had burst on Tuesday, you’d be dead.

Listening

These two days, I’m moored once again to my computer – but uninterested in the habitual and boring practices that have hypnotized me lately (solitaire, downloads, surfing, repetitive tedium). In the afternoon I open iTunes and play music, slowly, complicatedly, trying to manage the drip in my right hand, the tubes and cables that make reaching the keyboard slightly more work than seems worthwhile: all that seems pleasant is my playlist of folk music, and I turn that on for a bit.

A heap of Peter, Paul and Mary. After ‘500 Miles’, I am struck by the opening of ‘Sorrow’, to which I’ve never paid much attention –

I am a man of constant sorrow, I've seen trouble all my days. I’m goin’ back to California, The place where I was partly raised.

All through this world I'm bound to ramble,

Through storm and wind, through sleet and rain.

I'm bound to ride that northern railroad,

Perhaps I'll take the very next train.

Your friends they say I am a stranger
You’ll never see my face no more

And, among the self-pity and exhaustion, the sight of other patients – all old and pathetic, most of whom will be here longer than I, many of whom will die here… I think too much about these lyrics, I fall into them, enveloped in a new identity.

Later, increasingly tired, finding the tangle of tubes difficult to manage, I hear before I close the computer (for what will be a number of days) a rather rattling, slightly irritating reel, from an album by one of my colleagues: something I find difficult to handle right now, but something that gets into my ear. And my brain. As we shall see….

Darker angel

Increasingly my intensive care nurse is a Krankenpfleger, a male nurse; there are usually more of them than Krankenschwestern in intensive care, under the theory that they can handle tougher tasks and more problematic patients (dubious but there you are). He has dark hair, broad cheekbones, and never smiles: a Slavic or eastern face, dramatically if grimly handsome from my low, bed-ridden angle.

When I tell Joyce about him, she teases me, assuming I am attracted to this man. I can’t seem to correct this misconception, but I try: seeing him is not really pleasant, or erotic – it is impressive, intimidating, even, in the pale blue light of intensive care at four in the morning, slightly frightening. He cares for me coolly, precisely, and with scant interest in discomforts or problems I may have: not that he is not thoroughly professional – but any empathy, any warmth, is absent, and he seems skeptical of my need for pain medications, my wishes to move into a different position, as though we are on a battlefield, with no time for such weakling’s niceties.

Not that I dislike him, either: but he is the kind of nurse who makes you think twice, or three times, about ringing the buzzer – he is to be asked only for definite and clear tasks, and for help that you can prove that you deserve.

Geräusch (Sunday/Monday)

Sunday night brought chaotic, boorish noises from the street: I assumed they were Swabian drunks – this is, after all, a city that is well off, but is located in one of the more rural parts of what was once Western Germany. Some of my expectations of Stuttgart are, in fact, derived not only from Wolf and Gustav, my primitively wild Swabian friends from the early 1990s (think brown leather pants, rarely changed, a motorcycle, and lots of pot); but also from a comic book I bought around that time – Peter Puck’s Alle lieben Rudi, which retells the obnoxiously funny adventures of a pair of hapless middle-class Stuttgarters caught in a crazed world of skinheads, hippies, neo-Nazis, yuppies, nudists, gangs, punks, and other obsessed and loony groups.

So I just assume that the noise is drunks: smashed bottles, roaring, dirty songs, late-night takeaway: an Easter Sunday, but well after all the churches have closed; a bunch of roaring boys who don’t have to work on Monday.

But on Monday, Joyce tells me news of the world: that, this Easter weekend, the most startling thing on television is China’s crackdown in Tibet. She tells me of the Dalai Lama screaming in anger, chaos, guns – I am not quite up to hearing this… but she’s right, I do care about it. Joyce thinks the noise might not have been roaring boys, but Tibetan demonstrations… and I think: well, that would change everything; and then: but how can we know?....

Cast out (Monday)

It is the dark angel, the Krankenpfleger, who, on my third night after surgery, decides well after midnight that I can be moved out of intensive care.

The hospital is becoming busy again: after the holiday weekend (I assume the usual accidents, chaos, and probably those drunken lads – how many heads with beer-bottle-glass in them?), and several days of relative quiet, more beds are suddenly needed in intensive care. So, somewhere between two and three a.m., when I have settled to a peaceful if plugged-in night – sleepless as always here, but at least dazed into quiet and immobility – there is a chaotic rush of connections and disconnections, packing up and straightening and changing; and I am moved…

But normal rooms are not, at this time of night, available. I am shifted into what I think is a surgical room, or a surgical recovery room – I don’t quite understand the hasty explanations in the dead of night, none of which come from the Krankenpfleger anyway (he is not given to explaining things). This new room has a strange design: four bays, with beds, but no tables or stands; a large dividing wall in the center of the room, with an open transom over its entire length; a few small watercolors, some high-tech lights. But clearly not a room designed for patients, at least not patients who are anywhere near to consciousness.

My neighbor – or possibly neighbors – whom I cannot see as he is (they are?) on the other side of the dividing wall – has a machine helping him breathe. The air is strange and dry; the machine breathes constantly, in and out, a rhythmically changing white noise punctuated by occasional wheezes and coughs that fixes my attention unbearably. Sleep is out of the question: although this is the darkest room I’ve been in for days (no bleeping machines – in fact, my five tubes and cables have been reduced to three; and over the coming days I will look forward to the disconnection of each in turn), there are still unfamiliar, distracting, low-level lights. And that machine. And the parched air.

A kind of purgatory….

Umgezogen (Tuesday)

The next morning, I am moved again, to the hall where I will spend the next week. I will start to get familiar with a new run of nurses and doctors; to become accustomed to the disciplined pattern of the day; and will gradually, slowly, improve.

I am not unhappy; though not as dazed with comfort as on the two days of morphine, my drip (along with masses of saline and three bottles a day of various antibiotics) includes frequent Schmerzmittel, pain medication.

So when I am finally settled, I am pleased: with the clean, quiet, well-designed room, whose furnishings are distinctly more modern than in my pre-surgery room, and more comfortable than the purgatorial surgical recovery room; with the fact that I am alone, the other bed empty; with the relative quiet and peace of a hospital room that is not in intensive care. Too tired to read, to touch the computer, and it is hard to stay awake through Joyce’s visits: but I do not anticipate problems.

And so I am unprepared for the misery, the panic, the disorientation of the next two days….

Ostern in Stuttgart (I)

[March 19-23, 2008]

Winterschnee (Wednesday)

Snow is forecast, although it is Easter weekend (admittedly a very early Easter, tribute to the peculiarly arcane calculations the Church goes through to establish the date – look it up some time, the formula is nothing short of bizarre); and here it is – rich, heavy snow, very wet, but falling beautifully in the small park outside my room.

This hotel room is tiny but outrageously efficient: this is, in fact, a Germany that I’ve always liked a great deal – well-made, well-designed, excellent heating and lighting, wonderful bread, a vast range of Schinken und Käse at the deli next door. Perhaps I like it so much, not only because everything is so dependable, so neat, so functional, but because this is the Germany I first saw in 1993 – my first trip to Europe, the eight or nine months I spent in Kiel and Darmstadt. Like those small cities, Stuttgart was bombed flat in the war; so everything is post-war design, what Joyce has called ‘very seventies’; but Stuttgart does this kind of thing distinctly better than Kiel or Darmstadt, as it is both small and quite wealthy, because of the local Mercedes/Daimler-Benz money. I remember the city tram lines, which had a charming toylike quality – I wonder if they’ll still look that way to me….

Nachtschmerzen

Rather horribly, the night before my flight today, my digestion became acutely painful, endlessly, miserably so; I slept very little, and was a wan, frustrated ghost by the time I took a taxi to the airport. Impossible to change my flight, of course, impossible to handle being on the plane, impossible to handle the unreasonably bad planning at Schiphol where, as I’d been warned, transfers have become outrageously slow and difficult: a weird contrast to the rationalist pleasantness of the architecture of the new airport, which is purely rational urban Dutch, as though the entire place were a Helvetica font.

My dear friend Joyce, whom I am visiting here in Stuttgart, is in so many ways a blessing, and is happy to spend time helping me try to feel better: some Heilpraktiker tea, some pills at the Apotheke, a couple of Brötchen at the delicatessen by my hotel. I can do no work today, although the whole point in this trip is to put together this book that should have been finished ten years ago: but she is forgiving about that, and when we have done what we can to generate some symptomatic cures she takes me back to the hotel, we sneak various teas and a hot-water kettle into my room, and I sleep all evening.

But I’m not really better, and from around midnight that becomes all too clear: tonight, I am still in pain – and, increasingly obviously, real and serious pain. For months I’ve been assuming that my digestive problems were a kind of irritable bowel syndrome, something that requires managing my diet and avoiding coffee (why, in that burst of writing I did before I left, did I drink coffee three days in a row? – such foolishness); but of course last night and tonight I can’t help thinking: is this a different, a worse, problem than that? If I had an X-ray now, would it perhaps show some kind of awful dark shadow on my left side, where the colon is – where the pain is constant now?

Madness. Somewhere between the trivial pleasantries of Stuttgart, the valiant attempt to banish the ancient demons of not finishing this book, Joyce’s kindness, and my long reading of a novel by Nicholas Mosley – a book whose dark, thoughtful confusion is making perhaps too much sense to me right now – I can’t really find my balance. And I need to find it, because I’m not at home, because that damned book must get finished – and because, maybe, I really, really need to go to a doctor: and brace myself for something real – something non-trivial.

Mosley (Thursday)

And how strange: because of the pain, sleep is impossible; instead I have read this dense, wonderful novel – Nicholas Mosley’s Hopeful Monsters – five and a half hundred pages, entirely between getting on the flight at 10 am yesterday and 6 am today.

It would be so wonderful to sleep: but if I can’t sleep, at least this novel was the best of distractions. The density and darkness of so much of it – the tangled politics, ideas, and increasingly demented behaviors of 1920s and 1930s Germany and England, seen through the eyes very intelligent young people who are at a loss to understand what’s going on… and a happy-ish ending, which brings me great peace, something I could use right now.

Of course, now I have only one other book left to read, a professional and depressing one on the cultural theory of AIDS… I hope the local Buchladen has books in English.

But I think, more importantly, that I need to call Joyce as soon as I think she’s awake, and go see a doctor.

Krankenhäuser (Thursday)

Joyce responds quickly and practically to the situation – she really is a marvel – calling around to see what the best choice of hospitals would be, then telling me to dress and stand outside (I can’t button my pants, but hold them up inside my long coat) while she drives over to get me. The first hospital is a mistake, we are misled by confusing signs and two different hospitals with similar names; but we finally reach the correct one and take a gleaming elevator up to Internal Medicine. Many questions, many explanations, about insurance, citizenship, pain, age, date of birth, previous conditions; Joyce calls me, repeatedly, Herr Doktor Professor, and mentions to me later in an undertone that that ought to get me better attention. It’s like when I was living in Hong Kong: I used my titles like social weapons, and they worked – but I’m out of practice doing that, Brits tend to be somewhat ashamed of professional titles and avoid using them. Joyce points out that, on the top of the check-in sheet that is now the beginning of my medical chart here, it says clearly: Professor….

A charming, businesslike young woman doctor examines me, takes blood, enters me into the hospital: but what is wrong? They don’t seem to know….

Joyce comes with me up to my room, which I share with a very old man (it seems that almost all the other patients are in their seventies or eighties – Joyce says, well, Germany has a negative birth rate). He is not exactly charming – slurping food and moaning occasionally – but his wife and daughter are very pleasant, and I settle down, expectant that someone will now take care of me, and I can stop worrying.

In ernst (Friday)

I am not happy.

Friday morning, and although they are kind to me they have done nothing definite yet, and I am definitely not well – Bauch bloated, Magenschmerzen, Fieber. I point these things out to the nurse, in no uncertain terms; there is some bustling around, and I am taken in a wheelchair down several elevators, across and around several halls in different colors, almost entirely across the hospital to the surgical wing – to be seen, as though I was led through tunnels to consult with a sort of master wizard, by the Chefarzt (senior doctor, far senior to the ones I’ve had contact with so far). He is a big, hearty, country man; in the next few days, when he is out of the room, the younger doctors will tell me he’s known as a sort of Landarzt (country doctor), bluff and strong-willed. He examines me, then turns to me and says: I’m not sure what’s wrong, but we’re going to operate – now – so good-night, because you’re going to have general anesthesia.

I am taken into a room where a young man and woman bustle about, arranging me on a specially designed bed that has blue plastic gel supports for the feet and head – very high-tech, very well-made, very German – and prepare the anesthesia. They joke, I joke – I’m actually relieved that something is being done. And perhaps a bit relieved to being made unconscious.

But, of course, also a bit anxious….

Afterwards

It was a burst appendix: full surgery, eight-inch incision down the middle of my belly – later in the week I will read that when an appendectomy is done before the appendix bursts, it is done with a small incision, a camera, and two or three days in the hospital. Or when they already know it’s a burst appendix, the incision isn’t much bigger – but because they were going in blind, they did a great big exploratory incision. Ah well, I wasn’t so lucky: I will be here for at least ten days or so. I also read that it’s not their fault – although so many people have appendicitis, symptoms vary so confusingly that thirty per cent of appendectomies are misdiagnoses….

But, thank God, I am no longer in pain… morphine… intensive care. Feeling much better. Actually quite comfortable, rather happy. Morphine…. There are five connections to me – catheter, a tube down my nose into my stomach to carry away bile, a drip in my arm with saline, Schmerzmittel – morphine… – and antibiotics, whatever. Intensive care is fairly strange, constantly busy but at a low hum. Many machines, blinking lights, a sense of constant watchfulness. Intensive Care has not only Krankenschwestern – nurses – but also the supposedly stronger Krankenpflegern – male nurses: gender divisions are unsubtle in German hospitals. The lights are never turned off, the lights are never bright. Morphine…. there is a little tube attached to one finger, checking my pulse. Joyce says that the battery of screens behind me has all sorts of moving numbers – she tries to figure out what they mean – she can see what must be pulse and temperature, the rest are mysteries.

I am not uncomfortable. Morphine….

Nadel (Saturday)

A catastrophe: but not for me – because of me. The Chefarzt – I am gradually absorbing the information that he isn’t merely head doctor for a division or something, he is literally the chief surgeon for this entire large hospital – stuck himself with a needle during my surgery.

The dreaded needlestick injury: infection with HIV, with HCV, through accidental blood contact with a patient… one hears so much about it, it’s even been a long-term semi-tragic subplot in ER, House, and other television hospital dramas. It’s quite different when it happens during your own operation – now I feel, well, like a threat, like an unconscionable danger to others: as though those old Republican plans to put us all into quarantine in Utah were not such a bad idea….

I learn, also, that the Chefarzt is a month and a half away from retirement. He is widely feared, and as widely respected – the younger doctors (especially the meticulous young Turkish one who is slightly pompous, slightly grandiose, when he is alone in my room giving me instructions) often look panic-stricken when he is in the room, as though they’re about to pee their pants.

This is all upsetting. A plump, red-cheeked young doctor, sort of a young German teddy bear, asks me for information on my HIV viral load, my doctors, everything – I give it all to him, fax numbers, whatever I can. I am anxious, and say so: at one point I tell the Chefarzt himself, I’m very, very sorry – he simply raises his hand and says: this is not your fault, this is our job and our responsibility, don’t worry about it. And it is clear that he means it.

Of course, one must imagine: this bluff, strong man, retiring in six weeks – a moment of clumsiness in surgery: is one reason for his retirement that he no longer feels quite sure of his hands? How awful, then, that they should betray him in a moment, that they might betray his own health, his own immune system….

That day, a fax is received from England with my most recent test results; everyone is reassured that my HIV viral load is undetectable (as it has been for several years); I’d told them this, but of course doctors are always happier with information that comes in directly and officially from their own kind. Just to make sure, they send my blood to Heidelberg for testing… the next day the results are back (speedy service for a Chefarzt), and there is indeed no detectable virus.

So the Chefarzt is happy, he won’t have to do any kind of prophylaxis. Of course my HCV viral load is not low at all – but there’s no prophylaxis for that, and in any case HCV infection is exasperatingly mysterious. He seems unworried – and more than that: he seems pleased with me, that I made such a fuss about it – and this will have some very positive repercussions: because although I have not paid for a single room, I notice in the ensuing days, the ten days I will still be kept here, that I am practically always alone in a nice room.

The advantages of being a Herr Doktor Professor: and a favorite of the Chief’s….

Orange

Late this afternoon I orchestrated a lecture-discussion on research for a wide range of postgraduates – not the densest lecture (in terms of content) I've ever given, but successful I think, especially as I'd been worried about the rather vague theme and large audience. I was satisfied, and pleased with myself afterward; went to the nearby rather scruffy Italian restaurant for a glass of wine, some homemade pâté, a pizza, profiteroles...

And came home to an increasing headache. Panadol, water. Bed. Wakeful with intermittent headaches.

Then thinking, about 4 am: oh, Panadol isn't good for the liver, and that matters, because... well, casting backwards a bit:

***

For some days my shit has been a bit orange (sorry, there's no good way to say that – I typed "feces" and then thought, oh please). Orange means an increase in bilirubin, and that means my liver is going into overdrive, a little bit anyway. Wine? Pâté? Panadol? All things that the liver really, really hates. The signs of a cranky liver: the dry, yellowing skin, the headaches, the general sense of toxicity. Because I haven't been paying attention, maybe my hep C is going to act up, and maybe I'll have to do interferon again, and that makes me very sick and depressed, and maybe....

There is a passage in the middle of the second part of Angels in America where Prior, who has been wandering the streets of New York in search of the truth about Louis, lands in the Mormon Visitor Center and becomes frantic, panicky, as he starts to have difficulty breathing: he demands of Hannah, whom he's just met, to see if his forehead is hot – he starts moaning: I've overdone it, oh no oh no...

That panic from the sense that you've thrown away a period of good health, that the careless feeling that you could get away with a bit of alcohol or indulgent food has suddenly gotten you into a serious state (or, of course, not so suddenly: you know that it happened gradually, that there were signs, but of course you were too foolish or forgetful to remember certain constraints, certain needs, and now the situation has changed from apparently normal to abruptly critical) can pull you up short, remind you of mortality and health and things you've been blithely ignoring.

And, casting backwards a bit more:

***

In Los Angeles last week, both Susan M. and Susan H. mentioned at points how glad they were to see me looking so well (if not precisely svelte) – both of them referring darkly to my appearance when I last lived in LA, for six months in 2000 to teach for a semester – Susan H. said she could "practically see through me" then.

I was bothered by this, because I couldn't really remember being particularly ill: okay, I have a poor memory for some things, but you would think I would be able to recall that time more clearly than I do. I quizzed both of them about details, trying to recapture a period of disorientation, of illness, of panic: did they remember how I looked, could they give me more specifics? And so – how many bits of data could I collect, and how many would it take for me to recover some kind of experiential, some kind of gestalt, total, general, memory of being ill in that way?...

Which made me cast back further:

***

The last two days in LA, I was free to wander around, shop, see friends. I spent a lot of time in Westwood, at first delighted with its warm, cheerfully indulgent atmosphere, then increasingly uneasy at those signs of loss and fragmentation that I remember from even ten years ago, before the disintegrating world of the Bush administration: closed shop windows, going-out-of-business sales, all signs of LA's shaky economy.

At one point I had a few flashes back through my memory, helping me piece together a few fragments of that time in 2000 when I lived there: UCLA put me up in an apartment on the west side of Westwood, up near the university; near a number of restaurants, food shops – but I suddenly remembered that there were weeks, even months, where I didn't have all those choices, because I couldn't walk any further than the restaurant across the street for dinner: because I was so tired, so unwell – I actually learned the shuttle routes across campus at one point, because the only way I could get to my office (only four, five blocks away?) was by bus. Although I can't remember exactly how that felt, how I looked, how thin I apparently had gotten, the idea that I couldn't walk very far is startling to me now, and suggests some of the flavor of whatever memories, experiences, are now lost to me from that time.

And another fragment of that strange autumn returned on another street corner: I had started a new HIV medication – Kaletra, in what were then large orange gelcaps; and after a few days my skin itself (and other things – see above) had started to turn orange also. I thought, strangely enough, that the dye had somehow gotten into my skin – something the doctor thought was quite funny when he heard it; it wasn't the dye, of course, but my liver going into massive overload, and spreading bilirubin everywhere. Diagnozed with hep C, I was told I would have to inject myself daily with interferon. I remember sitting at a small table in a corner of the plaza outside the coffee shop near my apartment, helplessly crying, and trying to hide it, while I drank coffee in the bright, pleasant sun – horrified that my health had deteriorated to the point where I had to inject myself daily: as though that symbolized being really down-and-out, as though the bag of needles and vials I had just been given, sitting innocuously on the ground next to my chair, told me exactly how hopeless my body's situation had become.

***

My sister, a quarter of the way around the world from here, has weathered some difficult and probably frightening (though she would never admit to fear) medical procedures this week; the e-mails from her husband, and today from her, short but overflowing with relief, reflect a recovery from that same kind of panic.

But now, for me in 2007, in this time zone, it is 6 am: my headache is mostly gone. I'm sure I'll be all right, this time: perhaps there will be fewer glasses of wine in the next weeks (it's not as though I drink much anyway), and perhaps I need to drink more water – get some exercise – watch the fats, and all those other things that put the liver into an ill temper.

But it is like a flash of warning, of memory, a reminder of a larger world of illness, danger, crisis: orange, that warning color.

[The poster I found online, from Mark Rothko, great artist and pathetic suicide, was painted the year I was born. Talk about casting backwards....]

The dark mirror of the skin

It is strange, and trivial, and serious, and ambiguously embarrassing: to write about my own skin, about my psoriasis.

The factual: I've had psoriasis since I was eighteen (I was devastated when the doctor told me, as though I could already foresee what it would mean throughout my life, or perhaps what I would make it mean); it doesn't matter at all, as it doesn't hurt or itch. It gets a bit better at times, it gets a bit worse at other times. Extensive mucking about with steroid creams, sun beds, and various treatments can improve it a bit, but not all that much (at one point in the mid-nineties I was taking a semi-experimental retinoid that helped immensely, but it was hard on my stomach and disastrous for the liver and pancreas, so I'm no longer allowed to take it). Not to mention – vitamin E, evening primrose oil, homeopathy, diet, avoiding proteins, avoiding dairy, acupuncture, and all sorts of other promised miracles. It's genetic, systemic rather than infectious – my father had small patches on his leg; my eldest sister has it, not as badly as I did when HIV made me more fragile, but probably about as much as I have it when I'm normally healthy.

In the real world it doesn't matter at all. People hardly notice, most of the time – though when I was intermittently at my most ill in the late 1980s and early 1990s, a large part of my skin was affected (the phrase 'seventy per cent of skin surface' comes to mind, but I can't believe it was ever really that bad – on the other hand I can't really remember; one of the tricks is that psoriasis appears, not because the immune system is weak, but because the HIV virus is present – an unexpected and counterintuitive aspect of treating people with AIDS and psoriasis). I looked fairly terrible for a long time – which was fine when I was dying (or when I thought I was), but which I resent when I feel otherwise just fine.

And I do feel fine: and it's summer, and I got some sun. Now, and for most of the extended now that is my late forties and fifties, it's only patches on my elbows and knees, and a bit of scalp; it doesn't matter at all. And yet it does: I hate it – it changes my relation to younger, prettier, healthier, happier people; it makes it impossible for me to get past my other physical defects (of which, as Fran Leibowitz once said, everyone has at least twelve). In the late 1980s, when I met the guru Ma Jaya Sati Bhagavati, she made me jump in a swimming pool as a healing ritual; my skin didn't change, but I was obscurely grateful that she confronted it in that strange way, rather than seeming not to notice it.

Ultimately, what is hard to convey is how deeply embedded it is in my sense of self: the ambiguity of beauty and ugliness, of health and disease, of pride and shame, are fixed in these skin lesions, these scales, at every level of my experience. I often tell students to pay attention to the immediate psychologies of the writers they read, including the supposedly above-the-fray scholarly ones: that everyday details of people's lives can completely change the way they write music, the way they write words, the entire shape of the universe for them; that bodies matter to biographies, and biographies matter to ideas.

Well, for me, this ridiculous and trivial skin disease, which no doctor would consider worth a moment's serious attention, is a constant wound – an Amfortean wound, strangely enough (and I've never thought that until tonight, but now that I have it's clearly true). It is a mark on me, that thing that shows me to be not quite right, not healthy, not acceptable; it is the thing that bars me from happiness, from sex, from, well, everything. Absurd; utterly. And yet true.

(Think of Marat in his bath: but no, Marat must have had eczema, not psoriasis – he must have itched, been perpetually miserable, almost mad with the endlessly changing discomfort of it. Otherwise the baths would not have been worth it; he merely would have concealed himself in layers of clothing....)

I remember once, at a time when it was particularly bad, and my life particularly unstable and hopeless; when I was at Bill's apartment in San Francisco, in the kitchen, next to the window and fire escape in the middle of the apartment, my gentle, melancholy friend Mark Rhynsburger responded to my oblique but endless complaints about my skin by saying: Take your shirt off. I said, what? He said: take your shirt off: let me see. I took my shirt off; at that time there were red lesions and scales scattered in a band across my chest, in the same place where I had shingles another year. Mark looked at me thoughtfully and said, I would think somebody could see right past that.

I remember being stunned, shocked almost tearful, at his words, which are of course simple and obvious and evidently true.

For me, I cannot see past my psoriasis, which I have constructed as a terrible wound, as a dreadful armor against the world, against happiness: but he pointed out the revolutionary, radical possibility, that someone could simply not care, that they could see through it: and see me....