How to Live Well with Chronic Pain and Illness

Ms Bernhard was a Dean of the University of California Law School in Davis, California. Somehow, on a visit to Paris in 2001, she came down with a viral infection that compromised her immune system. The "bug" has never gone away, has stumped many doctors, and certainly the author herself.
Over the last few years, she has often found herself without energy to do even the most simple things: getting up, cleaning the house, going to the store, visiting friends --- certainly not being a major college administrator, which she was. Most of that is now in the past, for the virus has meant that she now has to limit herself to day-to-day activities. If she overdoes it, even in one afternoon, she will find herself having to pay back in absolute bedrest for several days. It's called being exhausted to the tenth power.
Fortunately, instead of just bemoaning her fate, she has devoted what energy remains to go online, to create a blog, and eventually write three books on the subject: what to do when the body goes out-to-lunch (and doesn't seem to want to return to the office). Chronic Pain and Illness is the third of her published books, and the message is really quite simple, told in the plainest, most direct language. Like: Do not force yourself. Always give your body its due. Listen to what it has to tell you. For when one has to live with an insult like this, you are not only dealing with a new body, soon enough, you will be dealing with a far different mind-set. Thus:, along with this new physical reality, you must be prepared for a profound emotional upheaval as well. There are many practices offered here, some taken from the disciplines of Buddhism which for some may be a life-saver.
In stressing the new path we will be on, Ms. Bernhard is offering one that is integrated, one that brings together Western medical approaches, but, too, classic renewal in a rich area of "peacefulness."
"Taking medication for pain is not a sign of weakness," she writes early on.
"No pain, no gain" and "Push through the pain." I suspect that people who offer this advice have never suffered from chronic pain themselves. Everyone has to find what's right for his or her body. For many people, it's a combination of pain medication and the practices I'm about to describe.
The "practices" are alarmingly simple. To start, one separates out the feelings of pain, discover where they live. Then you study the exact pain, even move some of the feelings over into non-pejorative words. "You are going to examine it with careful attentiveness. Is there burning? Is there throbbing? Tingling? Pressure? Heat? Cold?" Then,
Study your discomfort, becoming as familiar with it as a scientist examining a new phenomenon.
We may think what is happening to us is "a solid block of pain," whereas the pain will, on careful study, turn out to be "many different constantly changing sensations."
One of the most important parts of Ms. Bernhard's teachings has to do with the vocabulary we assign to whatever is transpiring. For instance, when I was a kid, we would come home from school and my dear old grandmother would be sitting in a darkened room, her right hand clutching a cool spice-heavy cloth to her forehead. She would whisper, "Go away. I have another one of my headaches."
What we learn from How to Live Well is that our poor old dear was laying personal claim to the intense pain she was suffering, was staking it as her own gold nugget which I suspect added a few more days to her agon.
The great hypnotherapist Milton Erickson once explained that sometimes a recurring torment like a migraine is there for a reason. He then suggested that we should shape it so that it didn't have to boggle up our lives.
One patient with migraines was questioned about her monthly schedule, was asked when she was more or less free, a block of time would not conflict with her many responsibilities. She said that the best would be a week-day afternoon, towards the end of the month: a Tuesday, say.
Erickson then put her into a light trance and suggested that on that day, towards the end of the month, for about three hours in mid-afternoon, she was to retreat to her bedroom, close the curtains, lie down, and go through the discomfort of it all. However, he told her, by five or six in the afternoon, it should be over and done with, and she could then return to other affairs of her life. She dutifully did what she was told, and thus was able to isolate and honor her body and its attendant miseries.
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Ms. Bernhard stresses that we might begin the practice of "bringing an attitude of kindness toward your entire body," reaching out to it with "care and compassion." Why? The body is "so much more than the physical discomfort you are experiencing."
One helpful tool is to call up a non-specific term that you can attach to whatever it is that you are dealing with. Instead of saying "my wrist is killing me." (As I am typing this, and since I have Carpal tunnel syndrome, I am thinking, "My goddamn wrist is killing me.") The author suggests, however, that I might avail myself of the opportunity to use words and phrases that are a little less colorful. Perhaps: "I am sitting in a chair in front of the computer, typing this review, and there is a fair amount of discomfort in the lower left part of my forearm."
A similar discipline device, which was taught me by a friend who had done body work back in the 70s with Arica, was that we should always try breathing directly into the pain. For instance, when I do transfers from my bed to the wheelchair, or from the wheelchair to the toilet, my left shoulder joint, what is known so poetically as the glenohumeral joint, will often give out with an electromagnetic lightning bolt, a jabbing pain that screws itself down along my whole shoulder, then jams itself down into the very depths of my bowels.
What my friend advocated, and Ms. Berhard confirms, is that better than saying "You Jesus-bitten dork-head son-of-a-bitch!" --- that, instead, I stop whatever I am doing, take in a deep breath, and direct the breath down and into the exact part of the body that is hurting. And that then I may "try to allow any tension associated with it to release itself."
The tension may be in your mind, in your body, or in both. If you can't release the tension, then try to let it soften by simply letting the unpleasant sensation be as it is without attaching a negative judgment or any meaning to it.
"It's just a sensation, and sensations are impermanent."
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Again and again, Ms. Berhard is telling us to be kind to and caring of our body. We may think that in our illness our body has "let us down;" in reality, "it is working hard for you." It is worth listening to her for she is someone who has had a compelling change in the day-to-day workings of that complex machine we call "self." And yet she continues unabated in her chosen field over the last fifteen years, after a virtual upending of her immune system, even the time she can spend with friends and family sometimes lost. For her to comment that her body is just "working hard" for her should bring to the reader a healthy respect, her grand ability to just get on with her life.
Finally I think it has to do with a comment I found earlier on in Christopher Hitchens book, Mortality. Hitchens goes into the rich detail of his body becoming a "reservoir of pain," especially where he meditates on the old bromide that pain makes us better people. He then offers the thought on whether the phrase his personal "war on cancer" is appropriate.
"I love the imagery of struggle," he tells us. But "when you sit in a room with a set of other finalists, and kindly people bring in a huge transparent bag of poison and plug it into your arm, and you either read or don't read a book while the venom sack gradually empties itself into your system, the image of the ardent soldier or revolutionary is the very last one that will occur to you. You feel swamped with passivity and impotence: dissolving in powerlessness like a sugar lump in water."
We suspect that Ms. Bernhard would agree with the destructiveness of invoking words like "battle" "struggle," "war." If we are in "conflict," it is only with ourselves, and I suspect that pulling these fraught words into the bedroom (indeed, into our bed with us), serves only to augment the distress that has now become such an intimate part of our lives.
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For the writer's instructions about the leisurely "scanning" of the body, I will let you refer directly to this book itself. It can be found in Chapter II, "Mindfulness Practices that Address Physical Discomfort." Just let me say that when I found myself in the same pickle as Bernhard some thirty years ago, I chanced across a therapist who gave me specific instruction not unlike what we find here. Only she referred to it as "The Countdown."
Like the "scan," one starts with a specific point --- in my case it was the anterior fontanel, at the top of my headbone, which is, as you know, connected to the neck bone, which is connected . . . etc etc. Slowly, very slowly, as I lay in a comfortable place, I begin to work my way down toward, into, and through the various parts of my body, examining each of the sites to which I had arbitrarily assigned numbers, from ten all the way down to zero. It could take me a full half-hour to pass over each of these body areas, to take note of pain, pleasure, ache, relaxation, or nothingness there, until finally, I worked my way down to the number zero, located so neatly there, right at the end of my little pinkies.
As I make my way leisurely down this landscape which I name "Me," I gently intone the word "relax," or "calm," or "aum" --- or some other previously agreed on benign, even tender, word (one that I had worked out with myself).
Sometimes I would chastise myself if I zoned out and woke up a couple of hours later, but Ms. Bernhard says,
If lying down causes you to fall asleep, that's a bonus for your body.
In all, the author has provided us with a generous 300 or so pages filled with suggestions for how to put up with what some may think of as something that is to be repudiated bitterly. We live in a war-like society, where with daily lessons on machines of the media that to survive we must get angry, storm ahead, blasting all, until we win.
Alas, they are not offered the chance --- as you and I are with this admirable book --- to heed the lesson from 2,200 years ago, from the mouth of the good King Pyrrhus.
It was after a battle that may have defeated the Romans but at the same time decimated his own army at Apulia. The king noted, "If we win another such battle against the Romans, we'll be completely done for."