I regret the depressing inexorability of a diary in blog entries documenting the progress of an incurable disease. I have thought seriously about shutting it down and having it deleted, or at least relegating it to an even more private space. That was difficult for technical reasons. But now I feel that though I am only writing for the thinnest niche within a niche, there are reasons to put these things on record, reasons besides the sense of control it gives me. For one thing, it’s possible that my family might someday want to know my thoughts and feelings. For another, as a patient facing the end, I have a certain authority in criticizing the inordinate resources expended on hopeless cases like mine. I know that economists disagree on whether 8.5, 10, or 25 % of overall or Medicare expenditures are devoted to those in the final twelve months of life. Anecdotally, everyone knows of cases in which life was prolonged at great expense without real hope. Encouraging a patient to throw in the towel is almost unthinkable. It’s unthinkable because we have no horizon of value that transcends the individual life. Individuals in this society are terrified of death because many of us have never had much of a life to begin with, and what we had was a lone flame that, snuffed out, leaves only the dark void that already haunted our inner lives as ennui and pointlessness.
But enough in this lugubrious vein. I have good news. For months now, I’ve been beating the bushes trying to find someone who could cook and help me in the household a couple of hours a day. I’ve asked everyone, including people I know who are professionally involved with immigrant circles such as the director of my volunteer English language tutoring program or the wife of a friend who is from Guatemala and has many contacts in immigrant circles. No luck. Everyone is working. The home help services, which in one case seems to be a scam, exploit their workers, intervene between the client and the helper, and take advantage of state programs to siphon off public funds. I had more or less exhausted every approach, when I had the good idea to invite Lyudmila, my former Russian tutor, to join Laura at my house on Sunday. They hit it off. We spoke Russian, they fluently, me haltingly. I asked Lyudmila if she had any acquaintances who might be able to help out. She thought it over a bit and said that at least for the summer, she would be glad to help. Lyudmila has her Russian warm heart and openness to anyone who gains her trust. I’ve known her since before I traveled across Russia. She is exotic, clearly Asiatic in her features, but tall and well-proportioned as the daughter of professional dancers. I know a lot about her family and she has been an occasional presence in our house for years. One more thing about Lusya. She has the Russian respect for the intelligentsia, for the modest living but cultivated class to which we and our modest, book-filled household belong. She doesn’t share the vulgar American awe of the merely big or rich.
Signed,
Andrew (Weeks)
Normal Thoughts 