When I was a young man, I spent a lot of time really sick, and in a pile of pain. It’s not an exaggeration to say I’ve spent days screaming. It’s one of the reasons I have so little tolerance for anyone who excuses torture, or for anyone who stands in the way of effective healthcare, including effective pain medication. This last week, I’ve had an outer ear infection, the first in my life, which, as it turns out, is remarkably painful. Not in the top five of my personal severe pain experiences, but definitely in the top ten.
(This is a re-publish of an article from June 2, 2011. Though I did spend much of the last 24 hours in pain. I am fine now. – Ian)
Of course, the walk-in clinic I went to today had a “even-if-you-are-on-the floor-screaming-covered-with-80-percent-burns-we-will-not-prescribe-so-much-as-a-Tylenol-2” policy. I didn’t even bother to ask. Fortunately, Canada allows some very mild OTC codeine (8 mg, combined with aspirin or acetaminophen, so the addicts can ignore those ingredients, and destroy their livers), so I have a bit of pain medication to take the very worst edge off.
Pain is one of the reasons I believe there is no such thing as a personally-interested, omnipotent benevolent God, because what I know about pain is this: You can experience titanic levels of pain for far longer than you can experience the same level of pleasures. The idea that pain is entirely adaptive is laughable, because pain very quickly gets to the point of incapacitation, and someone who’s incapacitated can’t help themselves.
Anyway, when I was around 25 or so, I wrote down the following aphorisms about pain:
No matter how much pain you are in it can always get worse.
Pain comes in infinite varieties; each type is different.
All other things being equal, mental pain is worse than physical.
The human capacity for pain is infinitely greater than the human capacity for pleasure.
Despite having spent days screaming, I have to say that it’s true that mental pain is worse. At a couple points I was on medicinal steroids, and for me, at least, medicinal steroids are the devil, as they cause brief bouts of insanity. I remember understanding the nature of infinity, in a very Cthuloid fashion (we aren’t just small, we are meaningless) and knowing that it was literally knowledge I couldn’t live with. Existing with that knowledge was impossible. I would have to kill myself. Strangely enough, I “knew” that my understanding of infinity was caused by the drugs I was on, so I very sincerely promised that if I still remembered my understanding in 12 hours, I’d go get a knife.
Needless to say I don’t still understand infinity, and I avoid medicinal steroids whenever possible.
Then there’s the “pain can always get worse.” This isn’t, I think, actually true. There were a couple points where pain became it’s own anaesthetic. Of course, those levels of pain were at the point where IV morphine was having zero effect, so I guess it’s good.
Pain is also about caring. If you don’t care, pain doesn’t bother you. This is the pain/suffering divide, where you see folks hanging from hooks during religious ceremonies having a great old time. Wheeee! Narcotic pain meds work a bit like this.
Roughly narcotics work at three levels. At the first level you just don’t feel the pain. Maybe a bit of pressure or the occasional ticklishness, but no pain. At the next level, you’re in pain, but you don’t care. The level after that, you’re saying, “You sure you gave me morphine!?”
My most memorable occasion of “in pain but don’t care” was when I started getting muscle spasms. I had a staph infection in my sacroiliac joint (the hospital did not know this yet) and every time my muscles would spasm it’d hit the joint, and I’d scream. The spasms were maybe 5 minutes apart, so objectively, most of the time, I wasn’t in much pain.
The problem, of course, is that I spent the five minutes between spasms worrying about the next spasm, which was totally wrecking me. At the time, my father was visiting me, and watching me coming apart was wrecking him, too. I’d been in the hospital long enough that my stiff upper lip was looking pretty quivery. So he ran around trying to find someone to give me a shot of morphine or demerol. Nurses aren’t supposed to do that without a doctor’s order, and no doctors were available (strangely enough, in hospital wards, doctors are often very hard to find). Eventually he talked a nurse into doing it (and I am grateful to her to this day, since I know she had to justify it later) and I got the shot.
Didn’t make any difference to the actual pain. Every five minutes, bang, the muscle would spasm and I’d scream. But in the time between, I didn’t worry about the pain that was coming up; instead, I was chatting and joking with my dad. Pain and suffering, not the same thing, and I can say that my Dad was suffering a lot less too.
Infinite varieties of pain: Yup. The pain of muscle spasms on a joint inflated with infected fluid is entirely different from the pain of your own body eating the large intestine from the inside out, which is entirely different from the feeling of the small intestine being infected and swelling up so that every time you breath it hurts and you get a wave of nausea.
Oh, and nausea? Worse than pain, in general. Short of knocking you out, there are no good cures for nausea. There came a point in that hospital (and I was there three months) at which my liver decided that everything was an evil foreign object. Everything. So every four hours, when they’d give me my antibiotics, about ten minutes later, I’d get to dry heave for five to ten minutes. Every four hours, for a couple weeks. Fun.
But I can’t really write this essay without coming to the real problem with pain management. You see, I went in with ulcerative colitis, a disease where your immune system decides that the large intestine is the enemy and needs to be destroyed with extreme prejudice. This involves a lot of bloody diarrhea and a lot of pain–but on the plus side, makes you look positively tuburcular. First time in my life, women were flocking around me. Too bad agony makes one uninterested.
So anyway, I went in and I kept getting worse. A week into my stay, my Gastro (Dr. Kempston) went on holiday. A week after that, I wouldn’t let the nurses so much as touch me. This caused one of the nurses to think, “This may be bad,” and she called in the doctors around midnight on Sunday. They cut me open and discovered out I had late stage appendicitis (as in a couple days from bursting), as well as ulcerative colitis. So they took that out, along with my large intestine.
Leaving aside certain logistical issues, this is all good. My large intestine hadn’t been doing much for me that didn’t involve, oh, agony, for a couple years. I wound up back in a ward, and my recovery was on.
But there were a couple complicating factors: (1) During those two weeks, I got an infected IV site; (2) I’d been on hard-core immune suppressants for about a month, so it’s safe to say that I didn’t have an immune system. Plus, I’ve had this pain in my sacreal illeac joint (it’s in the lower back). Apparently that’s kind of normal, but what’s wasn’t normal is that the pain I was getting from it was absolutely crippling. As in, “I can’t even push myself up in bed” crippling, as in, “Every time I am moved, I scream, a lot.” Crippling.
The surgeon then decided, in his infinite wisdom, that because he’d never heard of such a thing in all his years, that I must have been lying in order to get pain meds.
My back doctor didn’t agree. I had no family doctor. What ended up happening was that, every night around 8pm, the surgeon would swing by and say, “You’re a malingering little shit who should be outside running around,” and took me off morphine and onto some oral codeine. Around 8am in the morning, my back doctor would swing by and say, “Now, I don’t know what’s wrong with you, but I’m pretty sure you’re not faking, so I’ll put you back on.” Which meant that I spent half the day without pain meds, and the other half of the day dreading being cut off.
Fun. Fun. Fun.
This went on for some time (I’m a bit hazy, but I think it was a little over a week). I was nauseous, in pain, losing weight and muscle tone, and they couldn’t figure out what was wrong. The surgeon kept saying, “That’s because nothing’s wrong. He’s a little drug addict who is faking it! Hell, we should kick him out the door!” The nurses on the ward were divided into two groups, depending on whether they believed me and the back doctor, or if they believed the surgeon (who is apparently a great surgeon who has invented procedures!).
Finally, Dr. Kempston walked in, just swinging by, completely unaware of what was going on. He asked me how I was doing. It still embarasses me to this day, but I broke down. Much weeping ensued, along with the relating story.
Dr. Kempston went to the nurse’s station, and wrote in my file, “I will be acting as Ian’s family doctor. If his pain meds are changed, any time of day or night, I am to be called, and I will change them back.”
You could hear the gauntlet falling all the way down in the basement. Because if Kempston were wrong, if I was playing him, if I was just trying to get morphine, well, he was about to lose a ton of face. This was what the back doctor wasn’t willing to do, take on the famous surgeon, publicly.
I’d die for Kempston. I mean that totally seriously. If somebody was about to shoot the man, I’d step in front of the bullet without any hesitation and count my life well spent. Hell, I’d be grateful for the opportunity.
Anyway, they figured out what was wrong: a staph infection in my sacroiliac joint. That didn’t bring an end to the surgeon’s suspicions, so later we had a case where every time I breathed in, I felt pain and nausea on my left side. Kempston kicked the pain meds back up. Everyone on the floor knew that if they didn’t find what it was, Kempston would be in a world of hurt.
A couple days later, the test results came in. I had an infection right where it would have to be to cause the symptoms I described. The surgeon crawled in, said some weak stuff about me getting some more surgery in a year, and I didn’t see him again, except in passing.
I spent three months in that hospital. At one point, I was using a walker (my father and I had lots to joke about when he started suffering from the effects of old age). When I left the hospital, I was about 90lbs. I had a huge bushy beard. I looked like Jesus come in from the desert. I took myself to a hotel, of course they are freaked out, and I had to put down a $1K depsosit on $50 room, and room service demanded cash up front. (That ended the second my father rolled back into town. The staff then tiptoed around me for the next two days, scared not that I was made of glass, but that they were.) It took me years to recover, though, really, I never have. The easy good health and athleticism I had before is gone and gone forever.
But what I remember is not just that surgeon denying me pain meds due to paranoia and megalomania (he is a great surgeon, so I should have been cured and out of the hospital already and my not being so was an insult to him), and all the other people who didn’t stand up to him, who didn’t stop him, but the one man who did.
And so I’ve always known, since then, that some good people exist. There aren’t very many of them, most people are chickenshit–too weak to be good or even truly bad, but they do exist. And I know the price that one good man paid; I heard him talk about his daughter, who he hardly ever saw, because he put his patients first, and I saw the regret he had. And that he understood that when someone was screaming in pain, crying brokenheartedly, or puking up blood, you know what? They come first. And no, you can’t just assume someone else will do it if you won’t, because most people are weak, and most people won’t do it, when push comes to shove.
So when I think about pain, I think about Kempston. I don’t know if he’s the greatest man I ever met, probably not, but I am more grateful to him than anyone else who has ever come into my life.
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