things aren't bad today.
My chest, stomach feel a bit heavy, a shadow of a headache, a sort of – can I say a fuzzy version of tingling, a bit like when you focus on parts of the body in meditations and body processes, except in this case not temporary? Don't know what you'd call that.
I sort of remember dreaming last night – if I'm sleeping deeply for the first time in months – perhaps I'll remember some dreams...
This is indeed different. Not great but different.
I know, early stages yet: but this might actually work.
•••
Let's go back to the beginning of these five days....
•••
Health/time structure 1: renal catheter inserted seven weeks ago was removed last Thursday. They put in another temporary one for what was supposed to be three and a half days...
Health/time structure 2: as I've said I messed up my medications last summer, was put on new toxic ones in October 2015, and have assumed since then that my doctor couldn't change me to anything else... and still feeling poorly enough, often enough, that I've worried whether I can keep working at the university. Or complete the degree at the Jung-Institut. So, ten months of dislocation from plans, hopes – a sense of disorientation and collapse.
Health/time structure 3: I first got psoriasis when I was 18, and freaked out (not surprising, only older people are less worried by unpleasant but trivial body problems). It increases or decreases over the years, treatments aren't particularly effective, and when my immune system has been more or less a mess (for instance, the mid-1990s) it was far worse – though there's no clear direct relationship between it and anything I can see.
•••
So, Thursday, catheter out, catheter in. Feeling a bit beaten up.
Having contacted Occupational Health through my head of school, I am scheduled for an appointment on Tuesday.
Having emailed my own doctor that I was seriously having trouble with medications and worried about (unplanned and sudden) retirement, was talking to the university, Occupational Health, worried about the Jung-Institut, he responds! – and says, come in and talk to me.
Friday morning, I stagger (a bit) in to see him. He actually has a new alternative medication: it's not nice – the flyer bluntly says, same side effects profile, but cheaper – but he suggests it. Great. Pick up new prescription, take it home.
Friday night, take pill. Hits me like a ton of bricks...
but it is different: the body's response skews off in different directions. Toxic but not draining in the same way, perhaps? Still shaking, but only temporarily, it seems?
Almost as though – though I couldn't be sure yet – the eerily destructive quality of the last ten months' medications isn't present in this one – it's just the kind of medication that slams its way through the body, careless and heavy and even violent, but not... poisonous.
•••
But the renal catheter ain't great either, and everything feels very, very rough on Saturday. And Sunday; and on Sunday night I think, I cannot take that pill tonight – the catheter is out tomorrow, I'll skip it until then – and don't tell me I'm not supposed to skip medications because at this point I do not care.
•••
We all know the traditional conversation around HIV meds, that they're so hard to take – medical gossip is that more than half of the medical professionals who take prophylactic, one-month treatments never manage to finish them. So there.
(I wonder how many cancer patients stop taking their meds?...)
As for me, over the years people have often, blithely, said, Oh you've lived so long, you must have been so good about taking your meds! I just roll my eyes of course – my first time on AZT in 1991, I gave up after a month, convinced that dying would be better. And the awful meds of the 1990s – the one that caused kidney stones (hmm, there those are again), or the stupidly designed one that you had to crumble up and swallow in liquid, except that it never dissolved (did no one ever figure that out?) – I was utterly careless about taking those... in fact I wasn't very good about the major meds until the late 1990s.
(At some point, clearly, I realised I was going to live for a bit... and perhaps it was worth actually taking care of myself. Huh.)
I also think, with some guilt, of how I've blithely said that HIV meds aren't so hard to take these days – at training sessions for medical students, radio programs, and so on. I suppose the truth is that of the current twenty-five or thirty in use, in various combinations, most are nowhere near as bad as they were in the early, or late, 1990s...
but now I've been bumped to a bottom rung, the dregs, the old stuff. Like returning to 2001 – very unpleasant.
•••
As for these pills, it seems strange how much impact a little pill can have on the body –
and then I think, no: many poisons are pretty chemically simple, aren't they? And although some of them do only very simple things to kill people, others rapidly create a cascade of destructive effects. So maybe some small things are considerably bigger than we are.
•••
So, it's Monday. I'm still in poor shape – I email Occupational Health to cancel Tuesday's appointment, copying in my head of department, and saying: sorry, I just can't do anything now.
Around midday, my head of department calls, kindly agrees to treat me as on sick leave for a couple of weeks: don't worry, we'll figure it out. Which is the best I can do now.
In the afternoon, a doctor from Occupational Health calls: not unpleasant, but – well, bless his heart – he must be The Most astoundingly Boring person I've spoken to in forever: extremely long and extremely complete statements of everything, including the highly obvious. But he is also quite helpful, and not at all unpleasant, if you can wait from paragraph to paragraph for the obvious point.
I call the urology clinic in midafternoon: sorry to miss my morning appointment, I'm taking new and awful meds – they say don't worry, come in soon.
Which I'd love to do because even the catheter is pretty miserable.
And they say, you could even take out the catheter yourself! ... I think not.
•••
I don't take my meds on Monday night. I'm walkin' on the wild side... okay, not a good idea.
There's a certain who-cares fatalism floating around all of this... as too often in the past ten months imagining how to make getting rid of all the things I own easier, so they don't all need to be taken care of... Will? Charity shops?
•••
Floating through all of this is an acute sense of time: time in suffering, time where the body flings pain or ache or mere discomfort from one area to another – often across parts of the body that are hard to map: the dense structure from throat to crotch, the many organs.
I very rarely vomit, but over the weekend I do so twice – the second time a startlingly, utterly clear stomach acid, that comes up like a burning poison. We are always so unaware of what goes on as food descends into us – I realise there are parts of the body that are designed for this apparently deadly stuff, but that is hard to experience when it comes up into the visible body, the part we think we live in...
And of course I'm aware that, though I like to think I'm less frightened of death than many people, I find the slow, stretched-out time of suffering incredibly difficult. You cannot skip seconds, or minutes: it pins you to time and holds you, moving through each moment without flexibility.
Think of the shape of life: the latter part inevitably has this suffering – and of course modern medicine allows too much of it to continue. Which is why we fantasise about the brief heart attack, the sudden accident – anything but the months in a hospital room, its smells and discomforts, made endless...
An end which is fairly probable for many of us.
•••
(I came back to talking about this on Wednesday, in a brief web session with my analyst: he had been reading Jung' Nietzsche seminars, liking them a lot – as do I, I still think they're among the best of the seminars – and pointed me to 1936, Seminar 4, where Jung speaks of how incompetent the early Christian intuitive, mystical types were with the body, in the sensate world.
Which is where you would get the dominant traits of a religion, and later a culture, that would end up being so disembodied: in a world split between the transcendent/evanescent and the concrete/static, how could we possibly know how to be in our bodies?...
Which links to that entire modern capitalist world where I live in a large, pleasant apartment, but without close connections to a culture, a 'village', where it would be easy to say: take all these things when I go, use what you want. And I know you'll be around at the end, so I'm not worried.
We don't have any of that, do we...)
•••
Feeling less awful Tuesday morning, though still very weak. In four days I've lost nine pounds – hmm, the New Late Summer Diet.
And, okay, this is weird: in four days, my psoriasis, for the first time in years, has virtually vanished....
Isn't biochemistry odd.
•••
The clinic: a sympathetic nurse, a guy who may be Filipino, or Chinese? – tells me about a guy who had the same procedure last week, and his boyfriend there to hold his hand. (Clear cultural cross-connection here – we are automatically linking my HIV, and perhaps my evident foreignness and living alone, with being gay. Which is of course true.)
Home. Shower, wash sheets, wash clothes, vacuum. Slowly, not energetically, but everything gets done. Food in refrigerator has gone off of course, can't keep up with it when you're not eating anything, so give up and toss things. Which is always a shame but oh please I can't do everything.
•••
I am weak, but not miserable; I don't feel that bad.
I take the third pill – in five days – and –
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