in the hall of mirrors

Abandon

The shot again tonight. And the doctor phoned to say the medication is having some effect – so now I don't know what will happen, what decisions will be made in February; but oh well.

The past two or three weeks remarkable for the sharpening, the intensification, of side effects: no, they're still not awful (as I've said, nothing like as bad as people with chemotherapy); but overwhelming, sufficient to keep me home.

Walking up and down the back staircase (one story only) twice, to take out the trash, leaves me so tired I have to lie down – strange; as walking around on the level doesn't seem that difficult. And the seemingly endless coughing.

Fortunate that January is always a lighter month for us, and this January an especially light one for me – although there are important administrative demands going the rounds. But I can't really focus on them – the past week or so I am so exhausted I just give up, abandon myself to the couch, like some febrile, tubercular nineteenth-century poet in a garret. This will be problematic, as some decisions must be made....

And remembering a few more dreams, long ones that seem to dredge up elements that cross over decades. I've had a number of dreams that include material opposing creativity and academic work – or, in my case, my younger self and its hopes, versus my older working world (where I encourage young people, rather pathetically, to do things I don't feel I can do myself any more).

Like the one in a large library the other night, a vast Denkmäler collection that includes a strange turn-of-the-century drafted opera on death and war – comments on my self-destructive focus on death, a fight with an anima figure, my long identification/obsession with books are all in there – but saddest for me are the aspects suggested by this prospectus for a stage work: because these were the kinds of things I wrote up with such excitement in my teens and early twenties, and they were even (embarrassingly) the kinds of things I brought to the Princeton interview, when they decided I wasn't worth accepting. (And they are not, of course, the kind of thing anyone bothers to publish in Denkmäler.)

Scenarios, ideas, fragments: the kinds of things film people still draw up (and those of us in the other arts look at them in amazement and say, is this all you wrote? Where's the craft, the Fortspinning, the working out?). When I'm baffled by my analyst's demands that I do something creative, this is what I'm fighting with – that I don't remember how to imagine things (the part of me that had ideas seems silent after many years); and that I can't believe that I, or anybody else, would care if I were to sketch out more such ideas, scenarios. Craftless fragments.

A strange conflict or limitation: but it is good to have such a strong light shown on it – perhaps a way through will become evident, a chink in the wall.

Meanwhile, I lose myself in almost drunken, sensual inability to move after the shot: once I let the side effects take over, and stop fighting with them, it is such relief....

The dull world

So: the news from the doctor – the medication doesn't seem to be doing much; a final decision in another month or so, but probably this was all useless. Which was kind of expected anyway.

Annoyingly, since early December, and more so since Christmas Day (which was, itself, fun, at Michael and Andrew's), I am more trivially but sourly, tiredly, ill; the chain of colds and flus that everyone seems to be having (but I seem to be having more, rather than less, than usual); the unpleasant aspect of food, the tiredness of getting up... the sensate world seems dull and tarnished, a smeared mirror that won't wipe clear. I've thrown out several meals when they were cooked, because they smelled suspicious – which may well be just my distorted senses: I know I ate one bad meal last week, but in general many food smells seem unattractive at the moment. I try to come up with something to eat each time I am supposed to take pills... such a lot of food in the house, you'd think it would be easy; but nothing seems quite right.

Yesterday, after I'd thrown out a pizza on the day after it was ordered, and some tired vegetables, Katya, the Bulgarian woman who cleans for me (and who has tended to become quite protective of me) brought some pieces of cheese pita – she didn't call it that of course (that's the Greek name for it) but I can't remember the Bulgarian name she used. (These foods cross a number of countries – the truth is, in the wake of thousands of years of Byzantine, Ottoman, and Muslim/Christian/Balkan/Slavic/Greek wrangling, it's impossible to disentangle the origins of foods, or of musics.) It was kind of her, and very well-timed – I heated it in the oven for a few minutes, and enjoyed it; it felt comforting and quite safe, compared to some of the weird and toxic auras that food around me seems to have developed.

Of course a part of all this is the fact that I've taken the medication without the usual required antidepressants – which actually kind of upset the HCV doctor, he looked surprisingly concerned when we informed him of that decision. But I've managed, and I prefer it – it's actually worse to have that wrapped-in-cotton feeling.

Apparently an unnecessary addition, after all the coughing and tiredness and weight loss, is some sort of bacterial infection – upper respiratory? – something opportune that popped up between viruses. This week it has given me even more, dryness, coughing, and a sour taste that won't go away no matter what tooth-brushing I do, no matter how much fresh water or juice I drink. Clearly an antibiotic is the answer – hopefully not one with yet more digestive side effects; or would I care? – but I missed going to the doctor today, and apparently they no longer hold weekend hours; and this certainly isn't worth an emergency room, so I'll go on Monday morning before class.

So: dull, the sensate world full of sour, metallic tastes and smells, and that oddly torn muscle in my right hand....

I have been re-reading, for the umpteenth time, Tanith Lee's Tales of the Flat Earth, the first two books of five – and I've moved from the malice, fairy-tale joys and tragedies of the first book to the more intricately grand tragicomedy of the second, where Death faces down those who have stolen the draught of immortality. The bitter ironies of this part of the tale suit my mood – once Simmu has valiantly made himself into a hero and stolen the dull, gray liquid of immortality, he drinks, and he and all the many grand and brilliant people he has gathered around him drink; but they are merely human, and ill-suited to immortality, so that their energy, their purpose, drains away. They become dull, bored in a gloriously silver city at the end of the world, where they can do anything... but care less and less about doing anything. They become dolls where the clockwork has stopped....

A cruel tragedy, and one that is brilliantly told, with satire and sensuality leading to a dark sense of what a 'dead end' feels like.

Although of course that battle between lives and Death has nothing (or little?) to do with these trivial illnesses, the tone resonates... the sense, in this strange winter of bad weather and dying birds and fishes, that misery is not grandiose: it is just, well –

a bit miserable.

The Wish

On television, an old – and favorite – episode of Buffy the Vampire Slayer, from 1998, called 'The Wish'.

Not 'favorite' as in 'fun': this is one of the frightening episodes where everything goes horribly wrong – in a moment of petty irritation, Cordelia wishes that Buffy had never come to Sunnydale.

Unfortunately, when she gets her wish, it means that vampires rule the town; deaths are frequent, everyone wears dark clothing and flees for home before sundown, classroom chairs are empty, there are monthly memorials in the school gym. Many favorite characters are dead, some are vampires, and Buffy herself, when she finally visits the town, is a grim, brutal killer who expects to live a short and hopeless life.

At the end, as a disastrous battle begins to kill off the remaining good and bad guys in a Grand Guignol climax, Giles faces down the demon who granted the wish in his apartment. After he grabs the amulet that has caused all the trouble, the demon shrieks: how do you know that world is any better? And Giles, after a split-second pause for thought, looks up and says bitterly: It has to be. And crushes the amulet; and everything vanishes.

A disturbing episode.

And sometimes I suspect that my reaction to the episode has to do with a vague feeling that I'm living in the wrong time line, as it were: AIDS, so many dead and gone, distant exile and isolation, a chain of illnesses and poisonous medications...

If I could find the amulet, I would crush it too.

Symptoms

So: after having fussed and fussed (and fussed) about this treatment; and then latterly become conscious that I've been making it all a much more anxious activity than it needed to be...

I discover the next stage of my talent for making things more difficult than they need to be.

The first two injections – and let's not neglect the pills, I'd forgotten how hard these pills are on the digestion – were not particularly stressful; it was quite easy to keep working, symptoms were minor and passed almost without notice.

This weekend, however, a bit of chaos: for some reason the first day after the injection I didn't feel bad at all; then about twenty-four or thirty-six hours later, it hit. Scattered and changing problems: a mild fever for four days (ah, now I remember this – I think last time I did these shots I kept the thermometer beside the bed, in a sort of let's-see-how-I'm-feeling-via-numerical-data kind of way – my acupuncturist would laugh and laugh at me for that, he makes fun of me for having to figure out how I'm feeling); and sudden drops in energy, long sleeps, a general sense of being dazed.

Really not very awful: but it's a bit difficult to schedule it into work – my body doesn't seem to be following a timetable as neat as my computer's calendar program. Bummer.

Slightly tricky to give a Monday morning lecture, for instance: at the end of two hours of yammering away about deconstruction, I answer a slew of questions from the huge class, walk back to my office, and decide extremely rapidly that the next thing to do is: put my coat on and take a taxi home.

That night I called A. for advice, who has taken interferon herself (for MS; in a very different dosage pattern), and she, amused as always at my attitudes towards such things, just said, sanely: well, you just have to take it as it comes.

Sigh. I just want symptoms that will follow an Organized Working Schedule: is that so much to ask?...

Samhain

Today, the second of what I estimate to be three astoundingly difficult days of change: I would have said before, of disaster and loss, but now I'm not so sure.

A great crisis at work that has been held at bay for eight years. And crashing into the new medications, which has all gone – well, I was about to say unexpectedly wrong, but – actually: at top speed and amidst a host of unexpected added tests, appointments and decisions, the medical front may be actually going more as it should after having been somewhat skewed for some months.

A strange sense of entering battlefields and being forced into decisions I would have backed away from as recently as a few days ago: and simultaneously discovering there are plenty of people ready to help, there are ways forward rather than down, and that these may be changes that were actually needed.

That, in fact, change is not the same as death....

Blinds

For the most part, I have been sharply productive and energetic about preparing for my next bout with HCV medications, combined with the new school year. Robust, definite, in charge.

But an argument tonight about adding yet more things to do to my week has somehow flung me into memories from the first time I took these medications, in 2000. I was teaching, a visiting professor, at UCLA; I was doing a course on music and AIDS, and part way through the semester became suddenly very orange... I thought at the time it was my new HIV medications, which were themselves about the same shade of orange (the original formulation of Kaletra – a funny idea now of course), but no, it was HCV. And I was given needles to inject the new medications... as I've mentioned lately, I remember sitting at one of the sunny outdoor tables of California Pizza Kitchen in Westwood, far from the other patrons, uninterested in the lunch in front me, looking at the bag of hypodermics, and starting to cry, thinking: so it's come to this, this is what's left of my life.

I feel surrounded by those memories tonight. Susan said, later, that I looked as though I might just blow away... it must have shocked the students a bit; I actually became so weak that it was difficult to get all the way from my apartment to the music building on the other side of campus. A bus took me part of the way, but I started to calculate the shortest level distances to go the two or three blocks to my office... an eerie time.

Worst of all, night after night for several weeks, in that quietly barren rented apartment in Westwood, I kept having the strange feeling that lights, or eyes, were flickering behind the blinds. Venetian blinds the length of the apartment, with buzzing, glaring fluorescent lights behind them... I was so tired and ill, and frankly delusional, but I was sure some nights that someone was watching through the windows when I wasn't looking... it was very hard to sleep.

Toward the end of my four months I was feeling stronger and much saner, and went outside once, probably twice, privately reassuring myself that there was no one outside, that other apartments couldn't see in at all. That I had been... well, frankly, losing it.

It is always difficult to clarify, even to my own conscious, alert mind, just what 'losing it' might really mean: but it is indeed possible to become uncertain about apparent reality, to start to experience the waking world as a confusing, shimmering nightmare.

My control, my schedules and spreadsheets and firm requests lately, seem  designed to be a sheath over these memories, this fear: alone again, confused again, that possible sense of panic, confusion, chaos... injections and illness through all the winter months...

Yes, I know. I am considerably healthier than that now. But the windows are still here.

Volatility

After last night's cold-shower rush of awareness, I was given a pleasant gift as a reward, so to speak: a sunny, warm day, lovely and pleasant. Deserved, don't you think?.... well if you don't think so feel free not to chime in.

Met with Melinda, the psychologist at the clinic, about plans/prospects for taking interferon. We were pretty clear about risks and advantages; as I already knew, one of the things that raised my anxiety level about doing interferon (yet again) was not the memory of sitting outside California Pizza on a sunny sidewalk near UCLA in 2001, when I first had to do this medicine, feeling lonely and frightened and actually bursting into tears as I looked at the bag of hypodermic needles, nor was it the depressing time of wasting my first sabbatical in Newcastle on a second bout with this medication. It was the memory of B. taking interferon over the past two years – he was honestly a mess, a collection of disintegrating functions and added medications to handle his blood problems, digestive problems, breathing problems... we were all pretty appalled for him.

But of course he toughed it out, and is now doing quite well; he even came to the HIV patient group's meetings with medical students and talked about how he was doing (mostly as a way of getting out of the house).

As Melinda pointed out, entirely rationally, the fact that I've taken these medications without that many side effects suggests that it would be really strange if I had those symptoms, of course (but a bit of panic is natural). She agrees that she won't put me on antidepressants until we see how I'm doing – nice to have the flexibility, I hated the packed-in-cotton-wool feeling of taking them (besides, it would make my Jungian analysis a bit pointless for the duration).

One unexpected thing I did recognize in the discussion: I think my anxiety is also organized around something that has always bothered me, a source of some of the worries and depressions I exhibit in this blog: that I am actually emotionally quite volatile, changeable. Not socially: I don't fly off the handle – but emotionally, when good and bad things happen, I respond to them fairly heavily, and can change quite a bit in the course of a couple of days. Which is why I always complain about living alone, and try to fix solutions on external sources – friends, possible partners, even getting a cat – because although everyone who knows me sees me frequently seeming quite level-headed and cheerful, many of them don't realize that when I'm away from them my mood can plummet like a stone.

Good to recognize, anyway. Perhaps I can figure out some way of moving through that in the coming months... lucky I have Melinda, analysis, my acupuncturist – I must sound like a desperate child clinging to anyone who can help (hey, I was the youngest of a largish family); but I don't mind taking advantage of all those support systems.

Today, in the bookstore near the university, the counter near the sections of medical books had a charming new toy: a red ballpoint pen that looks exactly like a nastily realistic hypodermic, full of blood.

I bought one, of course....

Poisoning Rats

Warfarin is a drug in very common use – a variety of stroke, heart and other blood conditions tend to lead to it being prescribed. It comes in several strengths, each of which has a different color; patients get blood tests, at first weekly or biweekly, to see just how much they should take to keep their blood clotting at a particular rate.

It was originally a rat poison: because blood can't clot, so wounds can't heal – if you imagine it, a nasty way for rats to die. Someone in a laboratory must have really hated the little beasts. But now they give it to people....

For seven months now, I have had frequent nosebleeds, felt tired, felt toxic. Warfarin also has lactose in it, and I'm allergic to that, so I kept taking lactase to keep the discomfort down. And worst of all, after most midday meals, I would have a rush of painfully irritable itching – a sort of proto-hives, a sense that I was burning up; and would frequently go lie down for two or three, or four, hours. Or more.

Even though I take four HIV medications, plus three or four other medications that are either post-stroke or for other conditions, I somehow just knew that Warfarin was the evil culprit... or at least I thought it was.

So, when the doctor took me off the rat poison on Wednesday, and added one more post-stroke medication that is tricky to handle (it can't be exposed to air for long!) but apparently not as nasty, I was both hopeful and worried: what if the nasty side effects would go away? – but, just as possibly: what if they didn't?

Well, ha: the pharmaceutical companies can go back to poisoning their rats for fun. Just four days off Warfarin; dealing with the headaches that the new medication causes for the first three or four days you take it (the headaches are already passing away today); but the hives are gone, and my nasal passages seem to be functioning normally.

Most tellingly, I just feel closer to well, even with the headaches: less toxic, more awake, more alert, less depressed and tired at the prospect of work to do. Yes of course there are too many e-mails, yes of course the mass of students going abroad are acting like a herd of cats, yes of course there are too many administrative demands piling up as the endlessly efficient Richard leaves us for another job: but I seem strangely able to keep up, even to get ahead – marking, spreadsheets, decisions –

Perhaps the rat in me is feeling friskier: more able to jump from trash can to trash can, and enjoying the tasty garbage in the bin. Well, hey: whatever works....

Epitaph One-B

It is slightly peculiar how Joss Whedon's television series seem to give me what I need to work through times of unexpected crisis....

The Buffy book, edited by Vanessa and I at first, with Janet getting it over the hump in the last two years, is finally coming out at the end of this month. Both Vanessa and I agreed years ago, when discussing why we liked the show, that the grimmer disasters of the final two seasons (which annoyed many viewers, who wanted to be more amusingly entertained) were actually comforting for both of us, as they seemed to help in explaining danger, fear, and the vertigo of expecting to die soon and/or horribly. (In our case, not by vampires, but by illness.)

Dear Vanessa, of course, died on March 10, 2007.

She thus never saw Dollhouse, about which I've already gone on and on here... despite a weak start and a somewhat rushed end to the two years of the series, an amazing set of ideas in twenty-six episodes.

And, as I may also have mentioned, a series that was weirdly timed around my stroke... although the show started four months before the stroke, I didn't see it until afterwards; while lying around my apartment recovering in July of last year, I'd downloaded the back episodes to go through them, at first casually. And then was, as I've already said, deeply struck, and somewhat disturbed: the whole problem of the self versus the mind, modifiable neural architecture opposed to the illusion (?) that we are in there somewhere, is central to the series. Which is kind of what having a stroke is all about....

So, watching the final episodes has been even more, well, sort of disturbing, and at the same time sort of perfect. As changes and exchanges of minds and mind components get more complicated, there are also a number of instances of damage to the physical brain, corruption or deterioration of the data that makes up the 'mind', overlap between original and modified minds, etc. Most of the characters have reason to be concerned about the stuff they're carrying around in their heads – it may have been damaged and retrieved in a peculiar way that might have changed things invisibly, there may have been 'enhancements', and so on. And so on, and so on – it's remarkable how the increasingly intricate disasters of the second season, as the fictional (I hope) technology becomes all too manageable and portable (and the writers pack in ideas that they may have planned to unfold over several years), open out an entire spectrum of problems and solutions to the apparent link between a given brain and a 'person'.

As I may also have mentioned, I did have an actual PTSD (post-traumatic stress disorder) dream that used material from the savagely disorienting episode 13 of season 1 – a dream that my analyst pointed out had a ridiculously easy explanation: as is expected in PTSD, I didn't have time to be frightened or to panic when I had my stroke – I stored that panic for just over two months until August 18, when I could afford to be frozen in appallingly raw terror for a few hours, because I was actually safe at home in bed.

And now that series two has had most of the main characters, the ones we experienced as whole people, either mentally damaged, enhanced or at least copied, I am also coming out of the other end of a tunnel of treatment – for me a gratifyingly short tunnel, only about eight months. (Unusual, of course: but most stroke victims (such as my mother), being older and with more unstable blood pressure, apparently have more fragile tissues and suffer more extensive damage – which is why they end up taking these medications for the rest of their lives. And there is apparently also a great big dollop of blessed, inexplicable, absolutely sheer and incalculable luck in my recovery.)

But it is still weird – and almost excessively familiar – that as, for instance, Ballard comes to terms the possible limitations of his reconstructed brain, which replaces an original that is gone forever; and as Priya/Sierra and Anthony/Victor enjoy using their original minds again – with alterations, some asked for and some unavoidable; as Mellie/Madeleine, before her (their?) death, at least experiences a happy mind in her body, even if it isn't her own mind; and as the minds of Whisky/Claire, Alpha, and of course Caroline/Echo crash through their chaotically intricate histories, as well as a host of other figures and, ultimately, the minds of practically everyone that exists in the world postulated by the show... that as we watch all of that tangled, intricate mess of mind alterations, I can sit here and blithely tell people that I've recovered, almost completely, from my stroke.

Oh sure, I had to re-learn the name of my bus stop, but everything else works.

And, yes, I do forget names with what I suspect is a bit more frequency... but then I can't entirely tell if it's more frequent, can I?

And of course, at the back of – well, one can only say 'my mind' here – I can't help but wonder: this mass of neurons I'm using to type, to read, to watch television, to mark exam papers, to stand up in front of a crowd of undergraduates and confidently explain Adorno and Derrida – is that the same as it was? Is it, indeed, just as much me as it ever was?

And... how would I know?

Or, perhaps, one can't help but repunctuate: How would "I" know?...

Sudden dimnesses

Worrisome news from Paris. M. is not well, in a way that too much resembles my experience this summer. Which cannot possibly be contagious....

And in the back of my mind, as I continue to work rapidly through the plans for the book with Gerhard, is a worry: if I do indeed move forward through some of life's clouds, and if many things suddenly seem brighter, more possible – if I am, in fact, given more than I have expected for a long time, then does that mean – as an inevitable corollary, as the rigorous and unquestionable balancing of an equation – that something huge must be taken away? Is this, in some weird oblique way, my fault?

Perhaps this is why it seemed safer to try for less, to expect little, hope for nothing....