Notes on living in temporary remission

Mostly Facebook jottings from 4/9, plus a series of promissory notes for future spin-off postings. The central event is my entry into a period of temporary remission from a ton of afflictions and conditions, some going back decades. A remission set off by (prescription) pharmaceuticals that were merely intended to stave off my impending death from kidney failure. My kidneys are holding at their recent levels, which means some startling lab tests, but without any perceptible effects on my body: gratifying, but baffling.

Meanwhile my whole life has been altered, almost entirely in fabulous ways. The effect is surely temporary — it’s been one month so far, and I might be getting only another month or two, so I’m doing my best to live Zen-like in the moment, while babbling to everybody about how extraordinarily well I feel (with examples).

Please be happy for me, and don’t ask me to do anything that involves planning things for or preparing for anything but the immediate future. In particular, rigorous therapy to recover abilities that got lost in the bad times would be silly. (But putting some effort into very small-scale activities that I couldn’t manage a month ago is good, because that effort will make it possible to do a bit more; I can hook a ride on a little virtuous cycle. It’s tiring but effective.)

My notes, starting with an expansion of that Facebook posting (which brought me over 125 appreciations!) This stuff is totally unpolished, unrevised, extruded rather than composed, but I’m thinking that if I don’t get it out in some form I’ll never get it out.

(There will be no pictures.)

1 off for breakfast with EDZ this morning … walking tall and straight (but with the light support of my walker), almost twingeless in my legs (my arms and hands will never be ok, will always stun me with surprising pain, not after my right ulnar nerve was damaged, back in 2003) [to come: relative ease in bending down, putting on socks, etc. — after ca. 10 years now, following on hip replacement surgery in 10/12; I have periods of 6 or more hours in which I have no joint or muscle pain in my lower body, something that hasn’t been the case for 15 or more years, when osteoarthritis began to set in; oh yes, my nasty bunions don’t hurt at all anymore]

2 once again not getting out of breath [dyspnea on exertion — after ca. 5 years since it appeared suddenly and cripplingly] … four blocks total of walking today, bright sun on my face. [and a second, more recent, source of respiratory problems — piercing bronchial pain on breathing in cold air — has totally vanished]

3 everything at breakfast tasting deeper, better (my senses of taste and smell, so important to me, are suddenly sharp and vivid) [add stuff on taste, total lack of interest in intense sweetness; huge appreciation of umami / savory / meaty / fermented tastes (plus long-standing pleasure in extreme and intense tastes: bitter, sour, hot; I’m a super-taster, and I’m super-tasting up a storm]

4 after lunch, out for a walk around my block, just to look at my neighbor’s gardens. I realized I was radiating good feelings, but everyone who caught my eye stopped to smile and say hi, which was gratifying. And then I realized I was wearing my QUEER-in-rainbow-waves t-shirt (It’s been years since anyone except my condo neighbors, occasionally encountered by the mailboxes, got to witness my flagrant t-shirts, and they know my ways, respect them, and are mostly entertained by them.)

Apparently, a really old guy, radiating goodwill while strolling on the street with a walker, and flaunting his queerness, generated friendliness in the people who happened to be out in my neighborhood this afternoon. That was very nice. [much later I looked in the mirror and realized I had developed this truly wonderful crinkly smile, which is surely what people were picking up on; I radiate happiness, and random people tell me so]

5 [on joy; in a Facebook note to Mark Tatham] I didn’t of course write this to touch you specifically, but it pleases me to give you some cheer in your tough times [the death of his wife, Kate Morton]. I really do believe that if you get handed a gift of joy — as I have just been — you should share it as widely as possible, because there are others who would benefit from it. (And, frankly, it’s no skin off my nose. Joy isn’t some exhaustible resource that needs to be hoarded. It’s like freedom and equality, expandable and inexhaustible.)

6 [not on Facebook, to come in a further posting on joy (in Handel and Poussin): recovering my regular sexual function (I’ve had a high sex drive ever since puberty), with occasional moments of sexual ectasy, oh sweet Jesus, I thought that would never happen again]

7 [not on Facebook, for a posting to come: astonishing changes in the way my body works: my complexion has cleared up (not since childhood …); some of my head and facial hair is de-graying, turning back to brown (a sign that waves of stress-caused cortisol have receded); urination and defecation are both well-behaved and in fact enjoyable (not very long ago I had to wear industrial-strength adult diapers); a problematic skin condition on my arms and legs is, spontaneously, steadily improving; I have recovered my body smell (smell is a big thing for me), no longer a musty old-man smell, but the sharp musky essence-of-locker-room smell that I picked up at puberty and kind of defined me]

8 [not on Facebook, for a posting to come: I have my voice back, no longer croaking and sometimes barely audible; and, wow, I can sing again (singing is another big thing for me), after having no volume, and (much worse) no pitch control; I don’t know how this is possible, but it reduced me to weeping with pleasure (I know, I cry easily)]

9 [not on Facebook: yes, I am more or less perpetually exhilarated right now, but not manic; in particular, I can decide to go to bed at 7 or 8 or 9, whatever suits me, go to sleep in a few minutes, and sleep well for about 8 hours; ok I have to take a whizz every hour and a half or so, but I wake up for the occasion, use my bedside urinals, and drop back to sleep in seconds, so it’s not a big deal (I have suffered mania, and worse — disabling hallucinations — on prednisone in the past, but that’s not happening now)]

10 [more or less in line with that: for, oh, at least 50 years I’ve been subject to low mood swings when the air pressure is low, bad downers, but last week realized one morning, on looking at the sky, that the air pressure was low, checked my weather app to discover it was stunningly low — but producing no effect on me at all.]

No doubt there’s more. I keep discovering weird and wonderful stuff. I’m reminded of transformation tales, Oliver Sacks’s work that led to the film Awakenings, etc. I suddenly have tons and tons of things to post about, I am knee-deep in ideas, covering my work-table with notes of things to look up, things to think about, things to write about, people to write to.

Over all this: it will not last. Seize the moment.

One Response to “Notes on living in temporary remission”

  1. Mark Mandel Says:

    Holy fuck! I’m massively glad for you, man!

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