At one point in the interview, Kramer discussed Elizabeth Kübler-Ross’s five stages of grief (denial, anger, bargaining, depression, acceptance) in terms of his own grieving process in dealing with his diagnosis. While he expressed much admiration and gratitude for Kübler-Ross’s work and mission, he also spoke of a way in which such a model can actually slow, or even make impossible, true acceptance:
“She creates a false sense of power…a sense of false human control, that if we name it, we can control it. ‘Oh, I must be in the anger stage; oh, I’m bargaining here.’ But what I really came to realize was that if you embrace this ‘Dis Ease’ that you are given, acceptance and gratitude are not far behind.”
Kramer’s use of “Dis Ease” is a deliberate reappropiation of the word ‘disease’ to apply to the general uneasiness we all have with aspects of our lives, most often centering on the parts that we judge as ‘bad’. This is a point of connection between his particular experience of coming to terms with ALS and all beings’ struggle to come to terms with the first of of the Buddha’s Noble Truths, that to be alive is to suffer in countless ways, both so small as to be almost imperceptible and so large as to threaten to swallow us whole. Hearing Kramer’s words, including the audible, physical difficulty of his production of speech, something clicked for me. For just a fraction of a moment, I experienced communion and clarity…before, inevitably, my mind took over, before I had the thought, “Ah, *this* is my problem,” in other words, before direct experience slipped through my fingers. And here I am, again, trying to write about what has already passed, attempting to label that which disappears as soon as language is applied.
One of my favorite quotations about writing comes from Nadine Gordimer: “Writing is making sense of life. You write your whole life and perhaps you’ve made sense of one small area.” I appreciate both the boldness and humility inherent in her words. It reminds me that while words can function to talk about, around, away from direct experience, they can also trace your journey, where you’ve been, and in some sense, focus your attention. The gift inherent in Kramer’s quotation above is the reminder not to get so attached to words that they interfere with embracing direct experience, with waking up. There is danger in getting lost in, paralyzed by, the examined life, but the flicker of clarity I felt having his words whispered in my ear make it clear that words can also be a catalyst to direct experience. So perhaps the urge to write in order to make sense of life is not so futile after all. Like all neurosis or confusion, there is wisdom contained in the impulse. Our challenge is to look for both the confusion and the wisdom in our perceptions in order to access an expansive view that can hold the two simultaneously for a richer sense of what is here, now.