How did I never hear of this guy? He’s
prominent, he’s outstanding, his views mirror my own, he’s
written 40 books (which is 39 more than I’ve written), he is
professor of medicine (psychiatry) at my medical school alma mater,
Harvard Medical School, he has another professorship at another one
of my alma maters, Harvard College, in one of my favorite
departments, anthropology, where he was funded by another Harvard
grad of the anthro department, Michael Crichton, who was a close
friend of mine at both undergrad and medical school and with whom I
almost wrote an anatomy textbook that actually read like a book (Mike
suggested we write it together, but I was hesitant), and while I
started in Boston and wound up in the Bay Area at UCSF and Cal and
sold my practice eventually to Stanford, he started at Stanford for
undergrad and med school and ended up back at Harvard. Two ships in
the night, one prominent (him), one obscure (me). And we’re
exactly the same age.
There has to be a reason I wasn’t
aware of him. It could be competitive – I’m a competitive
person, and if someone is like me in some way, while I can find some
consonance and celebrate it, I’m just as likely to find myself
opposed, avoiding the obvious point that he or she has succeeded
better than I have, or is more recognized, and that I’m envious,
even if I’ve got plenty to be proud of. I’m competitive. So
maybe that’s it. Actually, I think I heard of him and just didn’t
pay attention.
Which appears to be my loss, for this
is a remarkable guy, Arthur Kleinman. Originally from New York –
so a New York Jew, while I’m originally a Philadelphia Jew – as
soon as he arrived at Stanford he appears to have picked up a
remarkable California wife – as did I around Cal. I heard him on
this podcast last month --
https://radioopensource.org/the-soul-of-care/.
Then, inspired by his deep feelings, remarkable journey, and
spiritual insight, I read the book he was talking about, his latest,
The Soul of Care: The Moral Education of a Husband and a Doctor:
https://www.amazon.com/Soul-Care-Education-Husband-Doctor/dp/0525559329/ref=tmm_hrd_swatch_0?_encoding=UTF8&qid=1585083881&sr=1-1.
Here’s what happened. While he and
his wife Joan were in the midst of their remarkable careers – and I
mean remarkable, this guy routinely juggled 3 or 4 very difficult
career balls at once, it’s just amazing to hear, and she was an
expert in Chinese studies – right in the midst of it, at age 59,
Joan developed early onset Alzheimer’s Disease. This was not a
bump in the road, this was falling into a crevasse. Early onset
Alzheimer’s is not only earlier than later onset Alzheimer’s,
it’s more severe. In her case the amyloid encroachment of her
brain started in the occiput, where the center of sight is, and she
became blind, and then progressed to become demented over a ten year
period, when she mercifully died with her family, and loyal caretaker
whom she had first rejected but then had come to love and depend on,
around her.
What Arthur discovered (I call him by
his first name because, after I heard the podcast I emailed him, and
he emailed back, so we are in contact, and when you’re on line,
it’s generally first names, an interesting development in social
relations that has been little commented upon, but I am aware of it
and I bet Arthur is, too, since we are both anthropologically and
sociologically aware), was that everything that he had preached –
that the medical care system was overly focused on the science of
care, too often to the exclusion of the process of actual caring for
the patient, which is actually performed by family and friends and
community and social agencies and housing agencies – was now
settling in on him.
The devastation of the love of his
life, his confrontation with his dependency upon her psychologically
and logistically, and the tasks that he must now face, crowded in on
him, after he and Joan together faced the now obvious and forbidding
path forward – we all know that we will die sometime, no matter how
strong our psychological defense of denial, but we are shocked when
we find that we know how and approximately when. She asked him not
to let her “linger,” and he assented, even though he knew he
wouldn’t be able to administer the coup de grâce she was asking
for. Arthur doesn’t mention survivor’s guilt, but I bet it was
there. Later on, as he struggled with care, he does own up to
sometimes feeling put upon, and then feeling guilty for that feeling.
But that was only at the edges. He doesn’t mention directly that
her affliction actually brought them closer – at least I don’t
think he mentions this, he might – now that dependency was acute
and he fulfilled all she ever could have wished for in a loving
husband. After all, as soon as the diagnosis came, he knew what he
had to do. He would have to care for her, personally, to the best of
his ability, and he is an exceptionally able man. It was this
automatic, inescapable decision that has given the ultimate meaning
to his life. Was it the Greeks who would say, when asked if someone
has led a meaningful life, we’ll have to wait and see? I think we
see with Arthur.
Both Arthur and I are well aware of the
frustrations inherent in our medical care system. And so,
predictably, the formal medical channels failed him. They failed
from the start when, despite the august grandeur of Harvard, they
couldn’t make a prompt diagnosis when visual problems were the
presenting sign. He was referred here and there, but it took his
going to someone he knew to be a superb diagnostician, a move only an
insider could make, for the diagnosis to be made. Everyone else
dropped the ball, and didn’t seem to care all that much as they
did. Some asshole had the temerity to call her a “fascinoma,”
repulsive jargon I first heard as a student at HMS, that typifies
viewing the patient as “a case” for intellectual “enjoyment,”
rather than a person in even more distress than if the diagnosis were
actually known.
Then the doctors failed to care for her
and about her – what about that, you jerks? When the diagnosis is
made, is it off your plate, not your department? Everything Arthur
had preached about, had inveighed against, presented itself to him
with his most beloved. (One thing I did miss in the book is her
shortcomings, how she disappointed – no one is perfect – but I
forgive him for that.) He had to reach out on his own, find support
and direction where he could, rely on his two kids and some friends
who came close while others moved away.
What he found out about himself was
that, amazingly to himself perhaps, he was totally capable of caring,
of doing those things he had seen families do, of doing the things he
had urged his students to understand, as he had understood from
visits to patients’ homes (a rarity now – my neurosurgeon father
had told me that when doctor and patients ceased to share a cup of
coffee at the family kitchen table, something irreplaceable was
missed), of doing the things he had seen in China, where Joan was an
expert and where he became an expert in cross cultural medical
anthropology. He found that his Chinese friends knew how to help
him. Yes, he could care.
And then he thought – I let her do
all these things for me, keeping the house and the family going while
I pursued my career, and I didn’t notice? Well, I noticed, but I
didn’t really give it the credit it deserved? And then, he thought
– I missed a lot of life when I delegated it all to her. He might
have thought that she actually could have insisted that he do some of
those things and taught him how better to relate to people, and he
would have benefited from it, but I agree, that would have been
churlish. She was a wonderful wife, and their summation as a couple
was what was important.
I’m reminded of the scene in Ram
Dass’s Be Here Now when his mother dies and he finds himself with
his father in the kitchen, performing some routine household task
like cutting or peeling, and finding consolation in doing it.
Consolation in doing the everyday things that care for others and
oneself. Not to be underestimated.
I sent him this
link to my recent essay on what an outrage it is that doctors are not
taught well how to convey bad news, and how to care:
http://buddshenkin.blogspot.com/2019/06/death-and-other-bad-news.html.
I recommended that medical students go on rounds with desperately
ill patients as soon as they start their first-year training, and
learn that what they are there for is to care, that the science of
medicine is a means, not the end. Arthur responded that yes, we saw
things the same way, and that I didn’t need to read his book, but
he still hoped that I would, and tell him what I thought.
What I think is this: the book is a
winner. And so is he.
Budd Shenkin