The lllness

Suffering, Healing, and
The Human Condition

Arthur Kleinman
People suffering from long-term pain are a genuine pain to physicians because they mock what American Medicine is all about, namely, solving a medical problem. The chronically ill have the ability to cause their unflappable doctors to become very ill indeed.

Doing residency in New England, Kleinman ran a group therapy session for quadriplegic and paraplegic adolescents. At one session, the patients spoke of suicide as a legitimate potential way out of what for almost all were unacceptable present constraints and bleak prospects.

Uneasy at this turn, Kleinman stated that suicide was a cowardly way out, and

    I waxed eloquent about courage and hope, and I think I even said, much as I blush to think of it now, that with the passage of time they could come to accept their condition as something they would be able to live with.

All of a sudden, one of the youngest patients, a sixteen-year old who had fractured his lower spine in a diving accident and who had managed to alienate virtually all of the staff owing to his unremitting hostility, shouted at me:

    Fuck you, Dr. Kleinman! Fuck you! You don't have to live this way the rest of your life. What do you know about what it's like to be in our condition? How dare you tell us what to do. If you were like us, you'd want to die, to take your life, too.

What is fascinating about the good doctor is that rather than unplugging his hearing aid (the reaction of most doctors), he actually listened to the words, let them penetrate, and thought about it for awhile:

    I simply could not imagine what I would feel if I were at that tragic impasse. How is crippling disability made meaningful? The question reverberated in my experience, threatening what sense of meaning I had worked out to engage the chronically ill.

And where did he go for his solution? Again, showing an unusual openness, he went to Paddy Esposito, Joseph Conrad and Shakespeare. Paddy wasn't an author, nor a doctor. He was a patient in the hospital, and what Kleinman refers to as "a natural therapist." Paddy, himself dying of myocarditis, and --- as well --- a student of Buddhism, told him:

    If you were in his shoes, you would have had no difficulty responding to him. Those kids were too young and too spoiled. They hadn't come to understand things. Perhaps it's our culture....We refuse to face the reality of suffering and death. We have powerful techniques but no wisdom. When the techniques fail, we are left shipwrecked.

Paddy then goes on to quote from Conrad's Lord Jim and Victory which told about ordinary individuals

    who were placed in situations where they were exposed to tests of personal courage ...(but) they failed because of an inability to see through the superficial fears of competence and questions of self identify that beset all adolescents and young adults.

They were too absorbed with themselves and their own reaction to things. They failed the great test, and afterwards were so deeply ashamed of their cowardice that they ran away...

    That's the great test for each of us: to serve others and through that to better ourselves.

§     §     §

    Patients learn to act as chronic cases [Kleinman points out] Family members and care givers learn to treat patients in keeping with this view. We collude in building walls and tearing down bridges. We place complex inviduals in simple, unidimensional roles (the disabled, the life threatened) as if this were all they are and can be. We turn our backs on poisonous relationships. We become part of demoralizing situations, and add unhelpfully to feelings of threat and fear.

All of us know people who are chronic, who are dying, who have reached the end of their rope. The lllness Narratives gives us many of these. But there are others presented who are handling, with dignity, age and dying and the pain of getting stuck in pain. It is to those we turn, as indeed Kleinman turns, giving us, for example, the transcript of dialogue between a doctor --- a rare, kindly and humane doctor --- and a patient who, while dying, is seeing it all without crippling self-pity and ruinous self-scorn. The transcript itself is a drama, written by a worthy playwright --- an Ibsen or Chekhov:

    PATIENT: I am dying now, aren't I?

    DOCTOR: Yes, you are.

    PATIENT: I can look into my garden and see sunshine. I know that next week, maybe tomorrow, it will be shining just as brightly, just as beautifully, but I won't be part of it. I will no longer be here. Do you know, can you imagine what it ... it feels like to make that statement and know that it is true for you, that you are dying?

    DOCTOR: I think I can, but I'm not sure.

    PATIENT: All that nonsense that's written about stages of dying, as if there were complete transitions -- rooms that you enter, walk through, then leave behind for good. What rot. The anger, the shock, the unbelievableness, the grief --- they are part of each day. And in no particular order, either. Who says you work your way eventually to acceptance --- I don't accept it! Today I can't accept it. Yesterday I did partly. Saturday, I was there: kind of a trance, waiting, ready to die. But not now. Today it's the fear all over again. I don't want to die. I'm only thirty-three; I've got my whole life to live. I can't be cut off now. It isn't just. Why me? Why now? You don't have to answer. I'm just in a lousy mood right now. You get scared. Otherwise, I've become like an old man, preparing myself --- but over weeks, not years...I want to talk about something else, Hadley.

    DOCTOR: Go ahead, Gordon. I've got time. I'd like to hear.

    PATIENT: I think too much can be made of death. Take my parents. I hardly see them. They can't take it. After I go, it will be very hard on them. But some moments like this, I feel ready to make an end, a final stop. We come into life, we spend an awful long time growing up, and then we go. The cycle goes on. New faces to replace the old. It can almost make you believe in the migration of souls. Even an atheist like me has to make some sense of it. Could it be that we are solving some still unknown evolutionary conundrum ?

    All our flailing and worrying must be for some purpose. What purpose was my life, my illness, my death! I'm still working that one out: It certainly can't be --- grace under fire or coming to some big understanding. It must be something more intimate. Death perhaps is the meaning of life. Only when we think of it in the real terms of our death do we realize this is the ultimate relevance. You see, Hadley, death is making me into a philosopher. Maybe it's because you are such a good listener and I get a good feeling after talking to you. I think I'm ready, Hadley. If I could will it, I would die now --- in midsentence, ironically, with the best part left unsaid. You can go now, Hadley. You done good today.

One of the themes of The lllness Narratives is that care and caring for the sick and the dying has gone from the hands of the religionists to the technocrats of medicine --- the specialists, the doctors, social workers, nurses. Often, their talent on the humanity-love scale leaves much to be desired. Kleinman is asking for caregivers who can actually give care. He is asking for the impossible. He wants them to respond instinctively, to react to need, to reach out. He wants those who will exhibit warmth and humanity, who can make our journey --- as perilous and as tortured as it must be --- a bit easier, to help us to find meaning in the Awful First of The Four Noble Truths.

--- L. W. Milam
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