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The cost of treatment was never an issue

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It may be as early as the middle of next week that S. is finally discharged from the hospital and able to come home. It’s been a long and hard road since our operation on 22 December last year and she has stayed in the hospital for the better part of two months… I can’t deny it’s been hard and tiring for the both of us, for me to see her so ill and weak, for her to be the that week, to actually wake up after the first crisis had finally passed and realise that she couldn’t remember anything that had happened since the day before the operation. Worse, like DC Comics in the past few years, she couldn’t stick to one crisis and actually had to go back to the hospital after she was discharged too soon. What she at first thought was some stomach or bowel problems got worse and worse, we went to the emergency department of the hospital, she was taken in again and the next day they had to do an emergency operation, re-opening the wound to drain more than a litre of infected fluid from around the kidney. It was this that had caused the stomach upsets, literally compressing her guts. Awful, awful, stress filled days and sleepless nights, but there was one worry we never had.

Whether we could afford to pay for all this. We will never get the bill for this, never will have to worry whether this emergency operation or the cost of S.’s lifelong immunosuppressant drugs treatment would bankrupt us, never even will have to worry whether it will put our insurance costs up or whether the costs of the transplant will be balanced out by the savings in not having to have dialysis anymore (In case you’re wondering, the NHS thinks the cost of a transplant is only slightly more than half the cost of a year’s worth of dialysis). Never an issue, never even something that entered my head to worry about, though S., who has spent a couple of years in the US, did every now and again. Even associated costs, like the transport to and from the hospital for the trice-weekly dialysis sessions, were never something we had to pay.

Which is an experience that people in most of the richer countries in the world will recognise, and something most citizens and governments in less rich countries want to emulate. Everywhere in the world it is taken for granted that free or cheap healthcare is a Good Thing — except it seems in the US. What everywhere else is seen as a liberation, is sold in the US as slavery, with the very real possibility of either being bankrupted by medical costs or dying because you can’t afford treatment presented as freedom of choice! You have people like Matt Welch opposing public healthcare while knowing it’s superior to the American “health care” system simply because it would put their taxes up sand they’re rich enough to buy what they need and screw everybody else. How shit hasn’t been burned down yet I’ll never know…

Not dead yet

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No, I’m not dead yet, just been preoccupied. A short recap: the operation that took place on the 22nd of December was succesful and I’ve been out of hospital since Christmas Day. Looking back my recuperation happened incredibly fast, but at the time it felt like an eternity, those few days in hospital. I now understand from firsthand experience what S. has said so often: that being in hospital is hellish, no matter how good the staff. You become just a cog in a huge machine and have to adapt to its routines, no matter how annoying. You can’t sleep properly, have to fit yourself to the times the nursing staff does their things and you constantly have to tell new people the same things. Awful. Understandable, but awful.

Since then it’s gone up and down. The first week home I seemed to get better easily, my scars not bothering me much and my family being a great support, both emotionally and for more practical matters. But over the new year I got an infection, the wound reopend and I’ve spent most of last week being in pain everytime I coughed, sneezed or laughed. The worst part of it was the semifever I had, putting me in an altered state of consciousness where I couldn’t concentrate on anything more complex than daytime tv and worse, all sorts of background details became embodied with too much significance. It’s horrible to notice the awful background music on most Discovery documentaries..

Meanwhile and more distressingly, S. hasn’t been doing too well either. After the operation and with her regular medication list slashed to the bone, she had a backlash that took her a week to recover from and then she ran into what the doctors think was a nasty side effect of one of the immunosuppressant drugs, which led to her having spent last week in intensive care, stuck with a breathing tube because she couldn’t breathe properly on her own. Fortunately, she has recuperated enough now that she can go back to a “normal” ward to recover properly. Somewhat of an intense time, as you can image.

But we’re still lucky. We’re both on the mend and within a couple of months or so we’ll both be as healthy or better as we were before the operation (it has to be better in S.’s case, otherwise it was all a bit pointless. Coincidently this weekend I’ve read two articles of people less lucky than us. Tony Judt, historian and political commentator, was diagnosed in 2008 with Lou Gehrig’s disease, which left him a quadriplegic. In his own words, he became “a bunch of dead muscles thinking“:

The disease ravaged Judt with astonishing speed. By December he had lost the use of his hands. By March he was in a wheelchair. By May he was wearing the “silly-looking facial tubing” as he puts it, because his diaphragm muscles were no longer strong enough to effect the bellows motion that induces breathing.

He gives me a little display. “So I want to move my right arm but nothing happens,” he says, with the only visible sign a slight flexing of his right bicep. Then he tries to move his legs and I can see a tiny spasm in both thighs.

“The leg you will see twitching and that’s about it. That takes a huge amount of effort because from the body’s point of view it’s as if I’ve just kicked my leg up five times.”

The suddenness of the catastrophe would leave many people paralysed not just physically but emotionally. Judt has responded differently. He has embarked on a fascinating, albeit involuntary, intellectual journey – a forced march of the mind.

“I was forced to think very hard about what it meant to be me, what it means to be a person who is only a brain. Pascal’s ‘thinking reed’ really does capture it, because I’m just a bunch of dead muscles thinking.”

Then there’s Roger Ebert, the famous American movie critic, who will never be able to eat, drink or speak again:

Success in such surgery is not unheard of. It didn’t happen that way. The second surgery was also intended to restore my speaking ability. It seemed to hold together for awhile, but then, in surgeon-speak, also “fell apart.”

A third surgery was attempted, using a different approach. It seemed to work, and in a mirror I saw myself looking familiar again. But after a little more than a week, that surgery failed, too. Blood vessels intended to attach the transplanted tissue lost function, probably because they had been weakened by radiation. A fourth surgery has been proposed, but I flatly reject the idea. To paraphrase a line from “Adaptation’s” orchid collector: “Done with surgery.”

During that whole period I was Nil by Mouth. Nobody said as much in so many words, but it gradually became clear that it wouldn’t ever be right again. There wasn’t some soul-dropping moment for that realization. It just…developed. I never felt hungry, I never felt thirsty, I wasn’t angry because the doctors had done their best. But I went through a period of obsession about food and drink. I came up with the crazy idea of getting some Coke through my g-tube. My doctors said, sure, a little, why not? For once the sugar and a little sodium wouldn’t hurt. I even got some tea, and a little coffee, before deciding that caffeine addiction was something I didn’t need.

I dreamed. I was reading Cormac McCarthy’s Suttree, and there’s a passage where the hero, lazing on his river boat on a hot summer day, pulls up a string from the water with a bottle of orange soda attached to it and drinks. I tasted that pop so clearly I can taste it today. Later he’s served a beer in a frosted mug. I don’t drink beer, but the frosted mug evoked for me a long-buried memory of my father and I driving in his old Plymouth to the A&W Root Beer stand (gravel driveways, carhop service, window trays) and his voice saying “…and a five-cent beer for the boy.” The smoke from his Lucky Strike in the car. The heavy summer heat.

For nights I would wake up already focused on that small but heavy glass mug with the ice sliding from it, and the first sip of root beer. I took that sip over and over. The ice slid down across my fingers again and again. But never again.

Two examples of people worse off then us, but also two examples of how you can adapt even to these horrible circumstances. When we’re in good health and temporarily able, it’s always difficult to image a point when we no longer are and easy to believe that this would make life no longer worth living, easy to believe we couldn’t cope with it. But the truth is that you can learn to live with disabilities as long as as you remain in good mental health.

We apologise for the inconvenience

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So yeah, this blog and all others in the mighty Wisse empire were down for much of the past couple of days, after my provider took my site offline after some fucker hammered it into a small grease spot by overloading my booklog with invalid requests that basically crashed the database. Incidently if somebody can give me a way to block access to /books/index.php?flav=rss through .htaccess I would be greatly pleased — I can’t seem to manage myself. That was just one annoyance during a cast iron bastard of a week. Work has been buay with tying up the ends of the current project in a vain effort to pretend it’s finished, I lost a filling and need to go back to the dentist for it next week, the buses consistently ran late and most importantly, the results of the last bloody test before the operation in two weeks were delayed. But fortunately when they came, they were negative, so positive.

Operation? Yes, not mentioned here before because until now it’s all been tentative and I hate making a fuzz about things that I have to take back later (and I don’t often mentioned real personal stuff here anyway). To make a long story short: S. is on dialysis and has been for almost a year now after her kidneys packed in, I’m going to donate one, and we went through the whole circus of compagtibility tests and other medical exams to make sure we could actually go through with it (we could) and were in a good enough medical condition (in my case, not too fat). Getting into shape took most of the year but we finally got a tentative green light a month ago, only to have to wait on yet more tests. This is all done now and barring major accidents between now and the 22nd, we’ll be having the op. Which means being in hospital at Christmas, which at least removes the pressure of the season…

So, ummm, yeah. How was your week?

an animated Under Construction sign blinking at the bottom of a page – forever

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Early internet nostalgia at MeFi:

The amateur web circa 1999 actually took a certain ammount of technical knowledge to participate in. You at the very least had to know how to work a WYSIWYG editor, and more likely, knew HTML – all to put a site up on Geocities talking about how much you hate the Spice Girls, and your movie review for the Matrix. The Amateur web today requires about as much technical knowledge as it takes to operate any other basic computer program, since Web 2.0 has turned web pages into applications. I’m not qualifying one era against the other, and in fact I prefer the more egalitarian Internet, but it’s still interesting to look back through. A garish tripod page about cool gifs has a little more of a personal touch than even the best Facebook profile.

But then again:

The problem with that was that most people didn’t have the skill or inclination to make their own website and fill it with interesting content, so most sites were just simple text and random images that were stolen (or hotlinked) from somewhere else on the web. This resulted in most of the web being filled with poorly designed sites with a few random animated gifs, and those sites were usually incomplete and/or abandoned by the author when people found them. If you want a vision of the web in 1996, imagine an animated Under Construction sign blinking at the bottom of a page – forever.

A sort of similar point was made offhand in the BBC documentary series Electric Dreams, in which a modern family is taken back from their electronics filled home to 1970, to live through the seventies, eighties and nineties and experience what live was like then. In the middle of the eighties episode, when the time came for the family to chose a home computer, the experts talked about how different expectations of computers were “back then” than they are now. The idea was that everybody would learn how to program to be able to use them and now of course you don’t need to know much more than how to click your mouse. Computers, like the internet, have become much more useful, many more people can use them, but still something was lost when this sort of expertise was no longer needed. On the early internet there was a feeling that you could do anything, that the sky was the limit and nobody could stop you, as long as you yourself figured out to do something. These days, the internet is just as commercialised and fenced off as any other mass medium and there are rules, man.

(Via Sore Eyes.)