One day, Deshan came to the hall carrying his bowls. Hsueh-feng asked him, “Master, the bell has not yet wrung to the drum sounded, where are you carrying your bowls?’ Deshan immediately returned to his room. Hseuh-feng told this to Yen-tou, who said “Great though Deshan is, he has not realized the last word.” (fragment)

~ The Gateless Barrier, Case 13

This is not a note about disease, it one about fear of a disease, and maybe about how, even in the midst of a terrible condition, we may still realize some joy. Yesterday, I lost my car keys for about an hour. I looked everywhere ~ out in the shed, in the garage, among the dirty clothes ~ only to find them, for some perplexing reason, in the driver’s seat of another car. After finding them, I recalled the words of medical doctor I had read some time ago: “I don’t get concerned if my patients lose their keys; I worry when they lose them in the freezer.” I also recalled the above koan.

Deshan, in this koan, is traditionally praised for demonstrating a thorough integration of his awakening into his life. Utterly living in the moment, when told the signal for mealtime had not yet sounded, he simply returned to his room. With no wish to diminish that narrative, I can’t help but ask the question: what if Deshan was also demonstrating the waywardness of early stages of dementia? We Americans have an out-sized fear of Alzheimer’s: though it is the second-most feared disease (31% of respondents), it is only the sixth-largest killer (4% of deaths); ironically, heart disease is the largest killer (23%), but only the third-most dreaded (8%). Perhaps with dementia, we fear the loss of control, complete dependency, and the inevitability of decline.

A friend, who works in a hospice facility, recently shared a story: She works with two women who are in later stages dementia. They cannot carry on a meaningful conversation with their families or even recall their own names most days, and outwardly, have little in common. One is in her 90’s and black, the other in her 70’s and white. Yet in recent months, these two women have found a shared language all their own. They will pass a baby doll back and forth while one soothes the baby and the other watches. Then they might start singing together and laughing, really hard, while talking nonsensically to each other. Though they may not recall these encounters even an hour later, what’s fascinating to my friend is how they live literally each moment in the present. “I’m telling you,” the friend writes, “It is a sight to behold. These beautiful exchanges (between patients) happen all the time, where language is felt, rather than communicated through words.” She says, “It makes me happy.”

This koan finishes up with Deshan giving an unusual lecture the next day, and his disciple goes to the head of the hall, rubs his hands, and says, “How happy I am that our Old Man has realized the last word! From now on he will be subject to no one on earth.” Two years later, Deshan passed away.

Julianne Moore’s Academy Award performance in Still Alice