The bitterness of Tay-Sachs disease and similar syndromes lies in its distillation of human existence. An infant with these syndromes is born quite normally and enters the world to recognize, make, and manipulate it: she begins to recognize light and dark, color; can begin to distinguish between the voices of her parents, those of others, and her own; though no small or gross motor skills have yet developed, she reaches for hands and can grasp. As the infant grows older, she might also learn that she can move things on her own. But before long, the progress of the disease takes its toll, and one by one these abilities fade: the eyes fail, the ears fail, her movements become uncontrollable, and eventually she slips away, just as she can begin to express love and need and exist as an individual self. This happens, usually, within three years’ time, but having watched both of my parents die over the past few years myself, I can see that this is mere concentration of the condition of existence. Visiting a father or a mother in a hospice, one sees the progression. One day they rise from the bed no more; they slowly lose the ability to see or hear or speak or express clearly; and one day, as the doctors say, they are not “there” any more. (For both the infant and the parent, the care is “palliative,” so that they may not suffer more, we imagine, than we ourselves ordinarily are capable of suffering.)
This occurs whether three or eighty-three. The sadness that attaches to the young life is that it is so new, and the door shuts just as it opens. It attests also to the truth of Pozzo’s realization, “They give birth astride of a grave, the light gleams an instant, then it’s night once more,” and of Vladimir’s conclusion built upon Pozzo’s truth, “Astride of a grave and a difficult birth. Down in the hole, lingeringly, the grave digger puts on the forceps. We have time to grow old. The air is full of our cries. But habit is a great deadener.” We may find in this the invitation to compassion and love, but only if we accept this truth, if we imbue our art with it or remember it every single day.