Not dead yet

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.