“[At the end of life,] you can let a lot of the rules that govern our daily lives fly out the window. Because you realize that we’re walking around in systems in society, and much of what consumes most of our days is not some natural order. We’re all navigating some superstructure that we humans created.”
BJ Miller (TW: @ZENHOSPICE, ZENHOSPICE.ORG) is a palliative care physician at the University of California at San Francisco and an advisor to the Zen Hospice Project in San Francisco. He thinks deeply about how to create a dignified, graceful end of life for his patients.
He is an expert in death. Through that, he’s learned how we can dramatically improve our own lives, often with very small changes. He has guided or been involved with ~1,000 deaths, and he’s spotted patterns we can all learn from. BJ is also a triple amputee due to an electrocution accident in college. His 2015 TED talk, “What Really Matters at the End of Life,” was among the top 15 most viewed TED talks of 2015.
This was BJ’s answer to “what would you put on a billboard?” He wasn’t sure of the source but attributed it to a bumper sticker. By the end of this profile, you’ll see how BJ loves this type of absurdity.
“When you are struggling with just about anything, look up. Just ponder the night sky for a minute and realize that we’re all on the same planet at the same time. As far as we can tell, we’re the only planet with life like ours on it anywhere nearby. Then you start looking at the stars, and you realize that the light hitting your eye is ancient, [some of the] stars that you’re seeing, they no longer exist by the time that the light gets to you. Just mulling the bare-naked facts of the cosmos is enough to thrill me, awe me, freak me out, and kind of put all my neurotic anxieties in their proper place. A lot of people—when you’re standing at the edge of your horizon, at death’s door, you can be much more in tune with the cosmos.”
TF: Ed Cooke (here) does something surprisingly similar, and I’ve started doing “star therapy” every night that I can. The effects are disproportionate to the effort.
The following is BJ’s answer to “What $100 or less purchase has most positively impacted your life in recent memory?”
“I would probably point to a beautiful pinot noir from Joseph Swan up in Sonoma County. It’s like the artwork of Andy Goldsworthy, or anyone who delights in anything ephemeral. The charm in a bottle of wine, the craft, all the work that goes into it … actually delighting in the fact that it’s perishable and goes away I find really helpful. I’ve gotten a lot of miles out of a beautiful bottle of wine, not just for the taste and the buzz, but the symbolism of delighting in something that goes away.”
Be patient with this and read the whole thing. It’s worth it. Scuderia motorcycle dealership in San Francisco also aided BJ with his seemingly outrageous mission.
TIM: “I hate to focus on something perhaps superficial, but you just said ‘riding your motorcycle’ in passing. Now, I apologize if this sounds like a weird question, but you have three limbs that have been damaged [effectively amputated]. How do you ride a motorcycle?”
BJ: “You know, this was sort of a long dream that recently came true.”
TIM: “Congratulations. I mean, it’s fantastic. I’m just so curious about the logistics.”
BJ: “Thank you. Well, it’s interesting you ask. The man who helped make this dream come true, Randy, ended up being my patient and our resident at Zen Hospice Project not too long after he converted my motorcycle. So there’s a lot to this story, my friend.
“I love two wheels. I love the gyroscopic lifestyle. I love the feeling of it, and I’ve always loved riding bicycles. I’d always wanted to get on a motorcycle. But I kept going to shops, people would look at me, and I could never find a mechanic who was willing to take it on and try to help make it happen.
“A fellow named Mert Lawwill, who’s an old motorcycle racing champion—sort of legendary in that world—happens to live around here [Northern California] in Tiburon. I don’t know what inspired Mert, but he’s a machinist himself and a handy fella, and in his retirement, he got into the business of building a prosthetic component that lends itself very well to mounting an arm onto a bicycle or a motorcycle.
“So, the first piece of this puzzle was discovering Mert’s invention and getting a hold of it myself, which allowed me to get my prosthetic arm attached to a handlebar in a very functional way.”
TIM: “How are the hand controls modified?”
BJ: “Randy figured out … Aprilia made a model, the Mana, that is clutchless. This is essentially an automatic transmission. So do away with the clutch and gear changes. That’s a huge piece of the puzzle out of the way. Then Randy figured out a way to splice the brakes, front and rear in a certain ratio, into a single lever. So I’m doing nothing with my prosthetic feet except holding onto the bike. I’m doing nothing with my prosthetic arm except for holding onto the bike. All the action is in my right hand. Brakes are one lever, and then Randy built this box and moved all the controls—the turn signals, horn, and all that stuff—over to the right side of the bike at a good distance for my thumb to reach them. I have throttle, brake lever, and then the turn signal box all going with one hand.”
TIM: “That’s so awesome.”
BJ: “That’s it, you know. Away you go!”
TIM: “I just have to pause here for a second and just ask everyone listening: What bullshit excuses do you have for not going after whatever it is that you want? Please, write in, tell us on social media why these are real excuses with #bullshit afterwards. Oh my God, man, that’s such a great story.”
BJ described waking up in a burn unit after being electrocuted in college and losing three limbs:
“A burn unit is a particular place. A gruesome place. The pain that the patients are going through is gut-wrenching. Working in a burn unit is very difficult. People usually don’t last in a burn unit very long as a clinician. The thing that often kills burn victims after they’ve survived the initial trauma is infection, so burn units are incredibly sterile environments. Everyone’s gowned up, masked, and gloved. For the first several weeks, I could only have one person in my room at a time.
“You’re cut off from everything. There’s no day or night. There was no window in my room. Even when people are at your bedside, there’s all this garb in between you and them. You have no relationship to the natural world. You can touch nothing. You’re also in a fair amount of pain, of course, which does not necessarily reward your paying attention to anything. It’s not fun.
“So that was November. At some point in December—maybe it was early January—there were two nurses in particular I felt very close to, and it may have been one of them [who brought me the snowball]. [One was named] Joi Varcardipone. It may have been Joi. It was snowing outside and I didn’t know that.
“She had the bright idea of smuggling in a snowball to me so I could feel snow. Man, it was just stunning. What a simple little thing, right? But she put it in my hand, and just feeling the contrast of that cold snow on my sort of crisp, burnt skin—the obnoxious, inflamed skin—and watching it melt and watching the snow become water, the simple miracle of it, was just a stunner for me. It really made it so palpable that we as human beings, as long as we’re in this body, are feeling machines. If we’re cut off, if our senses are choked off, we are choked off. It was the most therapeutic moment I could imagine.
“I would never have guessed this. First of all, the sensation, just holding that snowball. But also the implied, inherent perspective that it helped me have. That everything changes. Snow becomes water. It’s beautiful because it changes. Things are fleeting. It felt so beautiful to be part of this weird world in that moment. I felt part of the world again, rather than removed from it. It was potent.”
I asked BJ, “If you were brought in as a physician or mentor to someone who had just suffered nearly identical injuries to yours, what would your conversation look like? Or what resources, reading, or otherwise would you point them to?” He replied with:
“I think I’ve gotten in trouble when I’ve tried to come in with some predetermined idea of advice-giving. Oftentimes, that’s not really what’s needed. It’s more just the camaraderie and bearing witness. So to answer your question, when I do go into folks’ rooms, I’m there and I’ll avail myself to any questions they have. But I think most of the power of the visit is just visiting, just being together and sharing this awkward body.”
TF: Since chatting with BJ, I’ve noticed how this applies in many areas. To “fix” someone’s problem, you very often just need to empathically listen to them. Even on social media or my blog, I’ve realized that people knowing you’re listening—valuing them, collectively—is more important than responding to everyone. For instance, I sometimes put a period before readers’ names when I reply to someone on Twitter (e.g., “.@Widgett, that’s a good question. The answer is …”), so that everyone sees the reply. Even though I can’t respond to everyone, it shows I’m paying attention to blog comments and @replies. It’s a simple “I see you.”
• If an introverted hospice patient were to say, “Give me one to three things that I can watch, do, absorb, look at, etc., without human interaction,” what would your answer be?
“I guess I’d put a picture book of Mark Rothko paintings in front of them. I would put probably any music by Beethoven into their ears. And I probably would reserve that third thing for staring into space.”
• Favorite documentary?
“Grizzly Man. Any piece of art where I’m not sure whether to sob or laugh hysterically—I love that feeling. Where you just go in either direction, and you’re not even sure which is the correct emotion. You’re simultaneously attracted and repulsed by something. That was my experience watching that film, so I think it’s an amazing piece of filmmaking.”
For hospice patients at death’s door, big existential conversations aren’t always the needed medicine. One oddly powerful alternative is baking cookies together.
“Just the basic joy of smelling a cookie. It smells freaking great. [And it’s like the snowball.] You’re rewarded for being alive and in the moment. Smelling a cookie is not on behalf of some future state. It’s great in the moment, by itself, on behalf of nothing. And this is another thing back to art. Art for its own sake. Art and music and dance. Part of its poignancy is its purposelessness, and just delighting in a wacky fact of perhaps a meaningless universe and how remarkable that is. One way for all of us to live until we’re actually dead is to prize those little moments.”
• Advice to your 30-year-old self?
“Let it go. I do mean to take life very seriously, but I need to take things like playfulness and purposelessness very seriously…. This is not meant to be light, but I think I would have somehow encouraged myself to let go a little bit more and hang in there and not pretend to know where this is all going. You don’t need to know where it’s all going.”