Last night, I took part in a webinar on palliative medicine designed for ALS patients. I learned some things that my doctors hadn’t mentioned (such as that ALS can affect cognitive functions). One possible ALS symptom has the effect that the patient cries when something is funny and laughs when something is sad. By the way, this is how Brecht wanted spectators to respond to the actions on the stage of his epic or dialectic theater. Maybe the patient gains some special dialectical insight.
The deep personal commitment of the speakers was touching; and far be it from me to criticize their humane profession. But I suppose that here, too, one could detect the rationalist patina of technique. The spiritual and existential crises of the dying are approached with the methodical and rational outlook of hospice care. It’s all very admirable and the presenters were sincere and committed. So why do I still have misgivings?
By way of the generalization of their approach, they are like laborers who mine along some vein, approaching but never quite encountering the vast sea of suffering that lies just beyond the scope of their “person-centered” care. What if they knew that just beyond the artificial barriers interposed by their person-centered perspective lay the suffering of all those excluded by boundaries of social class, institutional capacity, and national citizenship? What if their patients knew that their sufferings were merely a tear drop in an immeasurable sea of sorrow? Would the caregiver despair? Would the patient be overwhelmed? Perhaps.
But it is also possible that the afflicted would realize that they are not alone and not singled out by a capricious fate. They might realize that in fact the very impression of being singled out is a symptom of those person-centering barriers erected so that the patient is paramount and the caregiver can focus effectively. They might realize that the barriers are the deeper cause of a suffering endemic to our society of atomized individuals; and that the barriers lie at the root of the terrible isolation that manifests itself even in the failure of friends and family to visit the ill and dying, and above all in the sense that the death of the one who happens to be me is the end of the world.
The presenters were good, sincere, informative, but I would still begin by rereading Tolstoy’s Death of Ivan Ilych. Tolstoy administers strong medicine; but I believe that for those who can stomach it, the effect is more palliative because it’s both truer and deeper.
Nonetheless, these reflections on suffering expand my comprehension of my son’s absorption in the Hindu wheel of suffering and in the escape routes of karma, and I think by my thinking these thoughts, I can better understand my wife and son in their predilections for liturgy and Catholic candle-lighting. They need to recognize in their own way that it’s not about me, not even about them. They need to pay their respect to the larger forces manifest in the cycles of life and death. If nothing else, it’s about self-reassurance that death shouldn’t be shocking, shouldn’t catch them unawares.
Their distance which can seem so cold and impersonal in excluding all normal banter with me is perhaps a measure of their sense of the enormity of my impending death. I prefer to see it that way.
Signed,
Andrew (Weeks)
Normal Thoughts 