Also here’s @jmooallem‘s story for @CalSunday featuring the brilliant BJ Miller, Death Redesigned: stories.californiasunday.com/2015-04-05/dea… cc @zenhospice

When you sit with a dying person, Miller says, “Time is always in the room.

[..]

Zen Hospice had hired Ideo for the better part of a year to work on several ambitious fronts at once. Miller told me Ideo would first help them “better articulate ourselves to ourselves” — zero in on what makes Zen Hospice’s philosophy and style of care valuable, and enhance it even further.

[..]

“I think,” Miller told me modestly, “we’re interested in gestating something like a movement.”

[..]

Ideo, meanwhile, had encouraged Miller to reach out to ted, and he was soon invited to speak on the final day of the ted conference in Vancouver in March. This was a tremendous opportunity: Bennett and Miller both sensed that the scattered but intensifying conversation about death in the culture was searching for some center of gravity. To become a genuine movement, it needed some stake to wrap around and grow — an ambassador like Miller, or an organization like Zen Hospice, or even an entire community, like San Francisco. “San Francisco feels like a very logical place to me for death to be normed,” Bennett told me. “It’s a place where radicalism was born. Why can’t the radicalism of death be something we help build here?” It’s a clumsy analogy, maybe, but it was easy to imagine Zen Hospice emerging as a kind of Chez Panisse of death, and Miller as death’s Alice Waters.

[..]

Miller, on the other hand, was delivering compassion. His whole life seemed to cling to a certain hard-to-articulate ideal — a determination since his accident, as he put it, ..

to live a full life and stay rooted in real things.

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being mortal – aspen institute

https://www.aspenideas.org/session/being-mortal

19 min – bj starts: palliative care did grow out of hospice.. it was anti medical..

1980s.. medicare got the business of hospice… (6 months or less to live.. that’s all insurance)

palliative: multidisciplinary pursuit of quality of life and mitigation of suffering… still relatively underdeveloped

courtney: insane that it’s a small field.. when you define it that way

bj: yes .. it’s part of life..

the first patient.. is the healthcare system itself.. which is a disease centric model..

25 min – courtney.. two themes… control and suffering..

35 min – on senses

36 min – end of life.. people are worried about 1\ being a burden (role in life dying before death) 2\being at peace 3\ being in pain

37 min – we still have at least one sense.. a great way to stay in touch until very last breath..

45 min q&a

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jan 2017

http://www.nytimes.com/2017/01/03/magazine/one-mans-quest-to-change-the-way-we-die.html?_r=0

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july 2019

CNN (@CNN) tweeted at 5:20 AM – 19 Jul 2019 :
What a doctor wishes patients knew about the end | BJ Miller, M.D., a hospice & palliative medicine physician, for @CNNOpinion https://t.co/gTtM8j0jMkhttps://t.co/PaJBSRdY4d (http://twitter.com/CNN/status/1152176388180467715?s=17)

You don’t need to be dying to receive palliative care

Don’t wait for your doctor to bring up hospice

It’s OK to laugh

In my book, “A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death,” someone tells of their stepfather wearing a shirt that read, “I’m so old I can’t find my own nuts,” with a doodle of a squirrel on it. His dying wish was to make his daughter laugh, and it helped both of them immensely.

When we get sick, people around us start censoring themselves. The solemnity is supposed to be a form of kindness, perhaps, but it can feel more like yet another loss, almost a premature death. As patients and caregivers know, illness and its indignities offer plenty of rich material for humor. The joke is only on us if we don’t find some way to laugh back.

Those guardrails on the hospital bed go down

When those guardrails go down, it is possible to cuddle or caress one another. Those moments are about feeling connected, sexually or otherwise, and finding ways to be in that body while you have it. They are about reminding yourself and each other that you are still here, both of you, able to love and be loved. This is how healing works, and it is very much possible to be healed — to be whole — even as your body falls apart.

To the caregivers: Don’t be afraid to leave the room

(for caregiver) our loved one might say or do things that are completely out of character. Behavior ranges from sweet to insufferable. I met an elderly woman at a conference once who nervously relayed the story of her husband hurling strange and vulgar accusations before losing consciousness for good. Now there was trauma on top of sorrow.

(for one dying) It’s almost as if the presence of others — especially deeply loved ones — gets in the way of the dying person’s final step. That big moment may need to happen alone. What dying people seem to need at the very end is to know that the people they love are going to be OK; that life will go on and that you — the person they care for — will be able to take care of yourself. So, the kindest thing you can do is to demonstrate that care by leaving the room when you need to.

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If you’ve ever lost a loved one, you know end of life care and grief are gnarly & seemingly endless processes. This is a gorgeous warm chat between BJ Miller & AP that might not make you feel better, but you’ll realise you’re not alone. /Kelly. https://t.co/7cqtWIk2tR
Original Tweet: https://twitter.com/GuiltFemPod/status/1316302589110161408

70 min podcast from may 2019 interview: https://amandapalmer.net/podcast/the-art-of-asking-everything-s1e3-bj-miller-an-expert-on-death-talks-about-life/

16 min – burn unit 3 mos – sterile.. starving for art.. a hellish nature.. screams coming from patients room.. your body screaming at you.. makes you really appreciate when you’ve got it.. ie: magical when i could start sitting up again.. reacquaints you with most basic things.. ie: feeling gravity.. helping me be fascinated by the material world was again

20 min – went into art – for appreciation – the observer of it.. seeing it not creating it.. so enthralled w the raw material of life.. looking at my life as art

21 min – from a driven/inherited path.. to couldn’t imagine a future.. then to a .. just getting thru the day ness got me to a mindfulness

23 min – have to be careful.. using disability as excuse.. used it after graduation because graduation scared me.. what next.. i found that disability world was a creative world.. just needed to be re framed

a: my understanding of disability as art came out of ted

25 min – that relationship between creativity and limitations

30 min – silly and anti therapeutic that we don’t play with our disability devices.. to begin to feel agency again.. like an argyle sock on my arm

33 min – i was boringly as standardized as i could be.. once you get there organically yourself (creative ornament et al).. people were staring at me either way.. i might as well find a way to play with it

37 min – if you absorb that .. i am unique ness.. getting pity for disability.. you just isolate yourself.

a: two sides for unique.. we are all the same.. and completely unique

a: we’re so bad at language.. incredibly limited.. my least favorite is love

language as control/enclosure

39 min – my thesis.. subtext.. how lame/inadequate language/words are as i write about it.. so constantly sandbagging it myself to show that trying to talk about art is so dumb

lanier beyond words law

43 min – a: i feel like at 43 i get how galvanizing (beautiful) loss is .. i never expected things like that .. a miscarriage.. would be a gift.. just a beautiful experience to see what i could do.. what i could see with my eyes.. i think what artists intuit.. is that the dark is really incredibly fruitful.. but what fucks most artists up is you try to fumble around in the dark and pick the fruit up.. and you can’t

46 min – a: in your book ‘death becomes the soil for the beauty’.. so many artists know this.. but so many artists have to manufacture it.. drugs et al.. on a level it’s true.. w/o accessing dark can’t get to the light.. but it eats you

47 min – one of risks is to become overly enamored w the dark.. subtle distinction to appreciate what darkness helps you see.. and the power the dark gives to the light.. if not careful.. overly enamored and clutching to the darkness.. very easy to do.. there’s an important hair to split in there

48 min – seeing.. light here darkness there.. life here death there.. but they’re all interrelated.. i think it’s the tension between the two.. if you need to get hooked on something.. get hooked on the natural tension.. don’t need to manufacture anything.. there’s enough pain .. if you’re paying attention.. no lack of pain

50 min – a: fear of de fertilizing the dark.. working thru the dark doesn’t mean you’ll lose access to it..  there’s no way to escape it

51 min – that’s what i mean.. you don’t need to own it.. protect it

52 min – book/title is huge.. a guide book.. we’ve invented so many ways to distract ourselves from death.. but not really living/alive..  people suffering so much more than they need to..  basic idea is to lift the floor.. access to basic info.. so that the floor of the experience.. so people don’t have to fall as far

56 min – a: on child birth being so horrifying.. we’re so bad at taking care of each other.. birth and death have so many parallels.. so much in common    .. who’s allowed in the room et al

57 min – a: your quote: ‘our med system is wired to extend life.. as defined by the presence of a heart beat whenever possible.. no matter how uncomfortable the means’

59 min – birth and death so linked.. both in the natural way and in the artificial way.. the way we separate ourselves from them

1:01 – flaw in all of our systems: independence    .. primary skill set (needed) is being a fellow human being ..t

thurman interconnectedness law: when you understand interconnectedness it makes you more afraid of hating than of dying – Robert Thurman

1:06 – my activism is the health care system

sicko ness et al

1:07 – about the book and all the things i had to cut.. all the insights/perspectives of patients that got cut from the reductive process of writing

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guide to the end

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