Josh Kornbluth

Josh Kornbluth

Week One at My Brain Gig: Uncertainty

To understand my life right now, you need to accept this complexity: at UCSF, there are two Dr. Bruce Millers.  One (he goes by “B.J.”) introduced me to hospice work, and the other (“Bruce”) has now brought me to the study of brain health. Each has the soul of an artist, and each — in his own way — is a dreamboat. B.J.’s professional focus is on palliative care, and Bruce’s is on dementia. Both have a visceral compassion for the underdog — for people afflicted with the kinds of diseases that tend to get them shunted out of sight of general society, and left to suffer greatly (often in isolation). So when you seek out “Dr. Bruce Miller” at UCSF, there may be some uncertainty as to which one you’ll get.

Three years ago, B.J. (along with his then-colleague Diane Mailey) invited me to become the first artist-in-residence at the Zen Hospice Project in San Francisco. I loved this gig so much that I asked to stay on as a volunteer. So when Bruce recently invited me to apply for a position as visiting scholar at the Global Brain Health Institute (GBHI) — a full-time, year-long appointment — my only concern (should I get it) was whether I’d have to give up my beloved Friday-afternoon shift at the hospice. When (very recently) I received the quite amazing news that I’d been accepted for the GBHI position, I was nervous about asking whether I might work around that shift: it already seemed they were making such a leap of faith in bringing on, as a visiting scholar, someone who is still working on his undergraduate senior thesis (originally due in 1980), that it would pin the chutzpah meter to go, “Thanks for the gig — and now, can I have Friday afternoons off?”

So even as I began at GBHI last week, I was weighing how (or whether) to bring up the hospice-shift question with the brain folks. And then, at some point, I just blurted it out — “Can I keep going to my hospice shift?” (while making up the hours elsewhere) — and their reply was: Of course — your two gigs are completely connected to each other: they are, essentially, one gig.

And just like that, I learned that there was plenty of room in my life for both Dr. Bruce Millers — for hospice, and for brain health — and I finally just went, Aaaaaah. Sometimes, even a Jew has to give in and accept a mitzvah.

*     *     *

GBHI is a joint project of the UCSF’s Memory and Aging Center and Trinity College in Dublin. (Among my many possible burdens in the coming year is having to spend some time in Ireland, the country I most want to visit.) Its focus is on spreading the word about healthy brain aging, with a special emphasis on underserved communities. Some of us, like me, are brought in as Scholars (for a period of between three months and a year); others come for two years, as Fellows.

I got to meet a bunch of the Fellows (most of whom, as it happens, are women) at the start of my first day, when I showed up for Didactics — the term here for what I’m used to calling “classes.” Around a table in a small conference room were Fellows and Scholars (another Scholar, the science writer Jamie Talan, was starting that day as well), along with an instructor and a technical facilitator; on a screen, via the wonders of tech, were a bunch of our colleagues, most of them in Dublin. I was starting in the middle of the current batch of Didactics, which fall under categories that compete with one another to frighten the daylights out of me: “Clinical,” “Economics + Implementation,” “Law + Ethics,” “Leadership,” and (scariest of all) “Statistics.”

The instructors were all charming, and I understood almost none of what was discussed. I have a lot of studying to do!

I spent the rest of the week getting “onboarded” at UCSF, meeting people, and hanging out with the other Scholars and Fellows. The Fellows are mostly young (a term that, at my point in life, has come to encompass the age range of infant up to 50, but which in this case means in their 20s and 30s) and come from all around the world. I was surprised to discover that a couple of them were from France, as I’d assumed the French think about brains only as food. There were also several from Latin America, including a woman from Brazil who kept passing around a box of delicious Garoto candies. On my way to lunch with her and some others from South America, I learned that “garoto” is Portuguese for “boy”; and I was assured that, yes, the boys in Latin America are the tastiest of all (an opinion that this norteamericano tried not to take personally).

Though the English of all the visiting Fellows is excellent, some of them feel challenged by the necessity of talking about very complex things (such as brain science) in a foreign language. One of them told me she’d recently had a nightmare in which all her teeth were broken — which she took as an indication of her struggle to be sufficiently fluent in English. In the next moment she was challenging me, in perfect English, with a delightful question: “Psychoanalysis is very beautiful for movies and novels — but does it help people?” Several of the foreign visitors — no strangers to slums in their own country — have nonetheless been shocked by the level of poverty and homelessness in San Francisco. All the Fellows are brilliant, passionate, and amazingly welcoming of a guy who made it through only two terrifying weeks  of Organic Chemistry in college.

I had a great time chatting with some nurses who work with the cognitively impaired — both in the clinic and at people’s homes. And I was greatly moved by sitting in on a case-review meeting, in which doctors and nurses — with tremendous compassion — tried to clarify to a patient what his disease might be, and what he might expect.

I say “tried to clarify”: my initial take is that the field of brain science (which is really many related fields) is shot through with indeterminacy. I sat in on a talk on the possible connections between medical marijuana and brain disease; from the little I could make out (not the speaker’s fault!), I took away that the verdict was: eh, maybe. Everywhere you turn, you seem to find super-brilliant people moving bravely forward in an ocean of uncertainty. I’m guessing this is a reflection of the stunning complexity of their subjects, and of the countless obstacles in the way of understanding how exactly the brain works (and fails). Indeed, hanging over everyone is the knowledge that, when it comes to dementia, there is no cure, and the disease is always fatal. So to work in brain illness is to be immersed in loss and loneliness (how isolated it must feel to be “losing one’s mind”!) — and I sense the heaviness of that burden in everyone working here, even on the occasions when they’re joking around.

The poignancy of their work is beautifully described in this YouTube video of Dr. Victor Valcour, a geriatrician who is also the co-deputy director of GBHI:

The subject of Dr. Valcour’s talk — storytelling — happens to be my one area of expertise. In my precious year at GBHI, I am hoping to investigate how people with cognitive impairments and their caregivers might be empowered by telling their own stories (in what I’m guessing will be a variety of ways). I’m sure there are many, many other things that I’ll be learning and doing — most of which I cannot, at this early stage, even dream of. But even in this uncertain environment, I can say one thing with certainty: this is one of the most exciting times in my life!

I’ll do my best to keep you in the loop on the wonders I experience, and on all the Dr. Bruce Millers I encounter.

*     *     *

On Friday, when I arrived for my hospice shift, I learned that one of the residents — a lovely, ebullient woman in her 80s — had just died. She had no family members present for the death ceremony, so a number of us volunteers, nurses, and staff members surrounded her bed to say goodbye. At the end of the ceremony, we all placed flower petals on her body. Then the man from the mortuary took her away.

It was sad, and also beautiful — even (if I may use this word) joyful: She had been adamant that she’d loved her life, every part of it, and her life had now ended in a lovely room in a meticulously restored house, surrounded by people who’d adored her. Incredibly, after suffering greatly in her final days, she had, in her dying moment, suddenly smiled — and a trace of that smile was still on her face as she lay there, lifeless. I now move among those who choose to face aging and dying rather than (as has been my wont) to look away. I see those who are suffering, and I see their champions, and I live in hope.

15 thoughts on “Week One at My Brain Gig: Uncertainty”

  1. Hello! I just finished a book by a hospice chaplain, Kerry Egan, “On Living,” which describes her interactions with several patients. It’s moving and wonderful!

  2. What an incredible opportunity you’ve got, Josh! I’m sure the year will be quite a journey and look forward to your reports in your unique blend of zany and zen, deep and deft, unexpected and thought provoking. Gosh, you might even get close to brain surgery…

  3. Congratulations. I am interested in anything brainy. I am still digesting the fact that we are 20% composed of cells and 80% microbes. I cannot get my head around that fact. It is equivalent to: what— the earth is not at the center of the universe. They are making much to do (research) about it here in San Diego. Research indicates microbes affect how we think and feel. So if you encounter any information concerning this issue, please forward it to all of us.
    Congratulations on yet another journey.

  4. Josh! This is SO exciting! Dedan is somewhere celebrating and giving you a “knowing” thumbs up! We are SO excited! Love you much! Am still in the East! smile

  5. This is wonderful. Josh, I’ve been a fan of yours from way back (one of our family phrases is “it’s not heavy, it’s bulky”) and now I’m glad to see you are a colleague! Let me know if you need any help with that stats class! Judy Hahn

  6. Josh, thanks so much for participating with our group today. You clearly saw how much we love and support one another! In my experience, it’s pretty amazing.

    Hope to see you again soon, and maybe to put an Alzheimer’s spoken word piece together. We can do it!

    Carol DeGuzman
    cell/text: 510 381 4235

  7. I am familiar with Bruce and the Memory and Aging Clinic. It’s exciting to read an inside perspective!

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