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People talk about how much of life is lost to sleep, one third of it, or something like that. One rarely hears, however, about how much of life can be lost to pain. I ran across a reference recently in a novel by Miklós Bánffy, to a character, Countess Miloth, who was described as “prone to migraine and nervous headaches.” “[W]hile her sister was always busy with household tasks,” writes Bánffy, Countess Miloth “would remain idle for days, resting in a darkened room.”
“Idle.” That’s a strange way of describing being incapacitated by pain. And yet it’s technically correct. I could not even begin to calculate how much of my life has been lost to this enforced “idleness.” I woke up this morning, that is, I woke up in the morning, with a headache. The pain is what woke me up, as it often does. I could not at first tell how bad it was, and I had forgotten to bring my medicine up to my bedroom, so I came downstairs. I took some medicine and made some coffee, hoping that the coffee would help, as it sometimes does. Migraines are believed to be caused by dilation of blood vessels in the brainstem. Coffee, or more correctly, caffeine, is a vasoconstrictor, thus it works, at least in part, in the same way that the migraine medicine works.
But the pain seemed to get worse as I moved around, so I made myself an icepack and secured it to my forehead with a headband. I poured myself a cup of coffee, but before I was able even to taste it, I was stricken suddenly with pain so intense I dropped to the floor and prayed.
The pain isn’t always, or even usually, that bad. But sometimes, like this morning, it is so bad it is indescribable. Imagine the searing pain of a hammer blow to the skull. Now imagine it lasting not merely for that brief moment, but indefinitely, for hours, or even days. I feared, as I have several times before, that my head could not possibly contain all the pain, that it was literally going to split apart, that I was going to be obliterated by it. I lay there this morning for I don’t know how long whispering “please God, please God, help. Please God, please God, make it go away,” until, finally, I was able to struggle upstairs again to my bed.
I could not sleep, though. I lay writhing in agony like a wounded animal, unable to find a comfortable position, praying I would not throw up because I had had neither the strength nor the presence of mind to bring a bucket up with me. Vomiting when one has a migraine almost never brings the relief that it does when the nausea has some other source. It’s only an additional misery.
At least I was no longer lying on the floor. At least I had been able to struggle up again to my bed, unlike the time at Heathrow when I had missed a connecting flight because of a migraine, and British Airways, thinking that my vomiting had been because I was drunk, had simply deposited me on a cold linoleum floor somewhere in the bowels of the airport to “sleep it off.”
“Do you think you will be able to make the next flight to Berlin in 45 minutes?” a voice had asked. And then sometime later the question came again from someone I could not see.
“I don’t know. I don’t know,” I mumbled over and over again, until, finally, the pain passed as a storm does and I was able to sit up again and to talk and laugh as if I had not wanted to die only an hour ago.
Once, years ago, before I had medicine that would help, I lay in bed, writhing in pain, repeating over and over again to myself: “It will go away. It will go away” because the pain of a migraine, when it is really bad, is so bad that you can’t think a complex thought through to the end. It will be interrupted and made incoherent by the pain before you can finish it. But still something races through the brain, if not complex thoughts, bits and pieces of thoughts, disconnected bits and pieces. That confusion seems actually to make the pain worse, so I learned to focus on that one saving thought.
“It will go away. It will go away,” I lay repeating to myself, in between the rapid shallow breaths women use to control the pain of childbirth. (It appears to be instinctive to breathe like that when one is in really extreme pain.) And then for an instant, for a brief instant when I was actually able to think a complex thought, I asked myself: What if you knew the pain wouldn’t go away? Would you want to die? And the answer came just as quickly as the question: Yes, I would want to die.
There is nothing redeeming about being sentient when all one can experience is pain–nothing. No, it is worse than that. It is not simply that there is nothing redeeming about such an existence. There is something terribly, terribly wrong with it.
Fortunately, I am seldom overcome by that kind of pain these days. Usually, the medicine works. It doesn’t work so well as it used to, though. It used to be miraculous how it would take the pain away completely in just an hour or two. In the old days, these headaches were something that would wake me up, usually in the wee hours of the morning, and I would realize, as I was waking, that the day would be lost to me, that I would not be able to get up until it was dark again and then only if I were lucky, because sometimes the pain would last for a couple of days. I would awaken on what I was dimly aware was a Monday morning, but then, when I was finally healthy again and able to get up, it would be Wednesday.
I don’t know how many days I lost like that, how much of my life I have lost to an oblivion more malevolent than sleep. I know I’ve lost a lot because there was a period of many years when hardly a week went by that I didn’t lose at least a couple of days this way. There was a period of many years when my awareness leapt over great chunks of time, like a person leaping from one stone to another to cross a stream. Monday–Wednesday-Thursday-Saturday, on and on and on, so that my life was made up of strange asymmetrical weeks.
I used to live in fear of these attacks. Even when I was happy and healthy there was always the specter of this pain lurking at the edges of my consciousness, like black clouds gathering for a storm, a tiny pin-prick size awareness that this vigorous health would not last. The fear was not so very different, I think, from that of a thief that he will be caught. I lived every day, every day with the fear that the pain I knew was stalking me would find me again.
When I lived in Copenhagen, I used to have a little philosophy discussion group. I missed a meeting once because of a headache. I tried to explain to the other members when I saw them again, that it had not been an ordinary headache that had kept me away, but a very, very bad one.
One of the members of this group was a physician. He listened intently as I described my headaches.
“That sounds like a migraine,” he said.
“Oh, I don’t think so,” I responded. “I don’t get any of those visual auras. No tunnel vision, or anything like that. And also,” I continued, “I’ve been able to connect them with stress and stress headaches, I know, are not the same as migraines.”
“Yes,” he answered, “but still, your headaches sound like migraines. I am going to write you a prescription for some new medicine that works very well for migraines. If they are not migraines, then the medicine won’t work, because it is not a pain killer. It works specifically on what causes migraines.
(This is a good place to explain that pain killers, anything short of morphine, anyway, don’t work on migraines. The pain of a migraine is so intense that it defeats all traditional pain killers. For years I thought aspirin, acetaminophen, ibuprofen, etc., were a huge pharmacological hoax, because I had never experienced even a shadow of relief from any of them.)
So I took the prescription, which was for six 100mg pills of sumatriptan succinate, and had it filled. The next time I had a headache I dutifully took one of these new pills, put some ice on my head, and tried to go back to sleep. And, miraculously, I was able to go back to sleep. I slept for something like an hour, or an hour and a half, and then, suddenly, while it was still morning, I sat bolt upright. The pain was gone. Like a dark cloud that had been blown away by a strong wind, it was gone, completely gone. I was myself again, laughing, happy, astonished at my sudden and miraculous rescue.
That medicine was a miracle. It changed my life. It wasn’t just that it gave me back days that would otherwise have been lost. It took away the specter of fear I had lived with every day for most of my adult life. I felt like the thief who had been pardoned. I felt liberated. I felt free.
Gradually, however, the medicine has ceased to work as well as it did in the beginning. I have cycled through several different formulations of the new migraine medicines. They still help, most of the time anyway, though not so dramatically as at first. Occasionally, they are no help at all. I think it helped this morning, though, finally. My guess is that, had I not taken the medicine, I would still be in bed now, even though it is evening.
It seems wrong that something so apparently innocuous as dilated blood vessels can cause such excruciating pain. Oliver Sacks mentions this phenomenon in one of his last essays “A General Feeling of Disorder” (New York Review of Books, April 23, 2015). “Nothing is more crucial to the survival and independence of organisms,” he writes, “than the maintenance of a constant internal environment.” This “constant internal balance” is homeostasis. It is maintained by the autonomic nervous system, the part of the nervous system that, as the name indicates, we cannot consciously control, but which controls itself. Usually, it does this well, but occasionally, something disturbs is. The balance is lost, with the result that one feels ill. Migraine, he explains, “is a sort of prototype [of this] illness, often very unpleasant but transient, and self limiting; benign in the sense that it does not cause death or serious injury and that it is not associated with any tissue damage or trauma or infection.”
“Benign” seems a strange word, as does “unpleasant,” to describe pain so intense it deprives existence of all meaning. It is also incredible that it apparently does no physical damage because when I am suffering from a particularly painful migraine and am repeating to myself that the pain will eventually go away, I am often gripped by a fear that it must be the expression of some profound disorder and that it will leave my brain so damaged that I will never be the same again.
“The worst affected patients,” Sacks continues, “ may be reduced to lying in a leaden haze, feeling half-dead, or even that death would be preferable.” In my case “leaden haze” is an improvement on the worst part of an attack. The “leaden haze” stage is achieved when I am finally able to lie in one place without moving, without writhing in agony emitting the kinds of frightening groans and whimpers of a wounded animal. At that stage, I fear any movement will catapult me back to the earlier more intense pain, so I lie still, play dead, in effect, to fool the pain.
At no stage do I feel half dead, though I know I probably appear half dead. At every stage I am only too aware that I am not dead.
I have wanted for years to write an essay about pain, about how horrific it can be, about the violence it can wreak on the personality. About how dehumanizing it is. About how anyone who has ever experienced really extreme pain could not possibly support torture, no matter to whom or for what reason it was done. About how anyone who has ever experienced really extreme pain could not possibly be opposed to euthanasia for those for whom such pain is chronic.
But I fear a real description of that kind of pain defeats me. The best I can do is to explain how it can shorten one’s life, take great, unrecoverable chunks of it. My head is better now, but I was unable to get up until after 2:00pm, and even now when it is almost 7:00pm, I’m too weak and tired to do any work. That’s why I’m writing this. It’s by way of apology and explanation. There is so much work I should have done today that I will not be able to do until tomorrow. Today is lost now, like so many other days before.