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BJ Miller understands mortality
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BJ Miller understands mortality
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BJ Miller understands mortality
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"Medicine’s great for infections. But don’t confuse it with a philosopher. Don’t confuse a doctor with an artist."
Conversations
22 November 2015

BJ Miller understands mortality

Interview by Nathan Scolaro
Photography by Angela Decenzo

Nathan Scolaro on BJ Miller

There is a comfort we seek in avoiding thinking about death—a sense of safety, to freely and peacefully go about our days. But what if that’s limiting us from living more fully?

It’s something I’ve been thinking a lot about since having this epic conversation with BJ Miller: oncologist, palliative care specialist, educator, thinker and all-round amazing human.

BJ heads up the Zen Hospice Project in San Francisco, a not-for-profit dedicated to changing the way we think about death. At its heart is a resplendent six-bedroom Victorian guesthouse providing 24-hour care for people in their final days. Residents and their families are immersed in an environment that awakens their senses, rather than one that numbs them by way of fluorescent-lit corridors and tired, overworked clinicians. Here, sunlight pours through the windows, art adorns the walls, soups made of locally sourced produce simmer away in the kitchen and volunteer caregivers share warmth and gestures of love. It’s a place that invites attention through beauty and the aesthetic world, where people can live fully right up until the end.

BJ was 19 when he had his own intimate encounter with death. It was his sophomore year at Princeton, and he and some friends were messing around at the university train station after a party. He climbed atop one of the parked trains, but the power line was live and it connected with the watch on his left hand, sending 11,000 volts of electricity through his body. He was thrown off the vehicle, left severely burned and unconscious.

“That night began my formal relationship with death,” he said in his massively popular TED Talk. “My death. It also began my long run as a patient.” BJ lost his left arm below the elbow and both his legs below the knees, an unfathomable reality for many of us. And yet, through a process of grieving and healing, he has come to see the experience as something he is immensely grateful for. “The gift was that it got me out of the habit of thinking about the future and comparing myself to others,” he’s said. “It rammed me into the present moment.”

BJ has embraced a life steeped in the big questions. After the accident, he changed his undergrad studies to art history to pursue a growing interest in the aesthetic world and the role perspective plays in shaping our lives. Later, he studied medicine, where he came to see the shortcomings in a disease-centric model of healthcare. Now, he advocates a new paradigm for end-of-life care—one that emphasises empathy, compassion and kindness and reminds us that even if we can’t be cured of a medical illness, we can be healed—fully. We can be whole. We can face death on our terms, he says, alive to all of it, finding beauty and meaning where we least expect it.

This story originally ran in issue #46 of Dumbo Feather

NATHAN SCOLARO: Could you paint a picture of life in the Zen Hospice: what the experiences are, the daily interactions for patients there?

BJ MILLER: So one thing to realise about Zen Hospice is that it’s a place. In this country most hospice care exists in people’s homes. Which is great and as it should be. But some people don’t want to die at home. Plenty of people don’t have a home. Plenty of people have a home but their dyings too complicated to do well in a home. So places like ours are very useful. And one of the reasons I joined Zen Hospice is because there’s bricks and mortar, there’s an environment you can cultivate for a certain effect. I’m really attracted to that. Most of us are pretty affected by our environment. Especially at the end of life when you’re looking for peace, looking for inner transcendence. I don’t know about you but when I’m in that mood I go to the mountains, I go to a cathedral. So there’s something to be said about what the aesthetic world can lend this experience…

…of feeling alive, awakened

Yes, and when you enter the hospice, you know you’re in a different environment immediately. There’s something about the vibe. Smells wafting out of the kitchen. Art on the walls. There is the spirit and ethos of the people who work there. The other thing to appreciate about Zen Hospice is its reliance on volunteers, who are key—they’re there to be human beings. Together with our nurses they round out our remarkable caregiving model. I’m a doc, I can layer in all this medication. But really the job is relating to a fellow human being. And so you kind of get smothered in that love when you walk in the house.

And you’ve said it’s letting the people in care live fully into their last breath, allowing them to live with joy and hope right up until the end. Letting them have a cigarette if they want, or sleep with a dog at their feet.

Yeah, which has been a gift to be part of. I mean, the rest of my life is as a physician in a cancer centre and an academic hospital: places where no one wants to end up, places that don’t reward you for paying attention.

This story originally ran in issue #46 of Dumbo Feather

This story originally ran in issue #46 of Dumbo Feather

And in fact I spend a fair amount of time apologising to my patients for the medical system, for the ugly environment or for the oncologist who didn’t tell them the truth about their diagnosis.

So as a practitioner it’s beautiful to be part of this humanistic approach to care. Buddhism still informs the model, and so there’s this idea that you relate to people through suffering, through when things don’t go well. That means there’s no shame or sense of failure in dying. You just have this sense of nature being much larger than you and yet you’re part of it. And as a human being it’s so nice to know when I picture my own death that there are places like this and people who bring their attention to it. I mean, you do not have to be alone, unless you want to be. You can know that there’s a place concerned with practising love in this way. I want to see this become a civic issue. Could a community judge itself by how well its members die?

Could it? I know you’ve been really active in creating systemic change in healthcare.

Well, I’m not alone. There’s a lot of people pushing this rock up the hill before me and side by side with me now. There’s a long tradition to draw from. I think if we’re doing anything novel now it’s expanding the relevance of other disciplines like architecture, design, the arts. I think quality of life is bigger than just being free of pain. There’s the meaning-making, there’s the relational stuff, actually feeling alive and present to the world. Also this idea that professionals have something to add to the mix, but really this is about humans being humans and taking care of each other. So if I or we are pioneering anything it would be to try to expand the circle of relevance that this subject seems to deserve and demand.

I think quality of life is bigger than just being free of pain. There’s the meaning-making, there’s the relational stuff, actually feeling alive and present to the world.
BJ Miller

Are you seeing that circle widen?

Yeah. I mean, I get to talk to you across the world. That’s amazing. Even a couple of years ago when I’d tell people what I do for a living, you watch the blood drain from their faces. They would get uncomfortable and sometimes just walk away.

[Laughs]. Leave you hanging!

Yeah! Now I tell people what I do and they’ll say: “Oh that’s so cool!  Tell me more! What’s it like?” So we’re in a different time, that’s for sure.

Why do you think that is?

I think a lot of people have been looking for new ways of thinking for some time. And therefore respecting it when we see it, not ignoring it, waiting or other people to see the potential also. I think also there’s an ageing population to contend with and most everyone you or I know has either taken care of someone who’s nearing the end or has died. So they see firsthand the flaws in the system. I also wonder if climate change has something to do with it.

How so?

Well, I think as human beings for the last couple of hundred years the thinking has been man versus nature. In high school English that’s the theme of so many novels we were taught, that we were sort of at battle with nature. I think we’re realising that, A) we are part of nature so we’re at battle with ourselves, which is kind of silly, and B) we have an impact on the world—it’s not an endless sink. So there’s a reckoning happening where we see we belong to a single planet. Australians, Americans, Chinese, whatever. We’re part of one planet and we’re affecting that planet. And that reckoning, that we could actually be evincing the end of our species? Shit!

Yeah, shit!

That’s like a megadeath. So I think that is part of the backdrop. And all of us trying to bend our heads around that is also inviting a different attitude to these other aspects of our lives.

What have you learnt about attention in your work?

I think Buddhism is so interesting because of its relationship to the present moment. How it frames the undeniable: the past is in the past, the future hasn’t happened yet, and really we only have the moment. That’s a little oversimplified because we have this talent, this penchant to remember things, and this penchant to forecast futures. So I want to take that capacity very seriously. Saying: “I’ll just live in the moment!” That’s very hard to do for a number of reasons. But I do think there’s something to it when your moments are running out, all the more reason to soak up what you have while you have it. That’s the discipline. Delight in it while you have it. I watch myself and my patients forecast grief about a loss that hasn’t even happened yet. So you’re consumed not by enjoying the final waiting moments you have, but by the fact that those moments are about to be gone.

That’s so true.

And that’s fine and normal, but I also think it’s something to push against. And this gets back to the notion of “playing it all the way out” or “living to your last breath.” I see that in the dogs I’ve lived with: how they’re just alive, alive, alive and they’ll accommodate whatever happens to them, and then they’re dead. There’s alive and then there’s dead. There’s not a lot in-between. You know, there’s illness and there’s a body falling apart, but you’re still there. I think the mindblower—especially among healthcare professionals—is when I simply point out that dying people are still alive. Cause we talk about “the dying” as though it’s some other species. And then we come across all the problems that happen when you separate yourself from others. But the fact is we’re going through this same damn thing.

It’s this story we’ve told ourselves about dying. I think of people I’ve lost in my life—my grandfather, I remember this look he gave me when I visited him just before he was to die, this desperate look that said, “I can’t believe this! This wasn’t meant to happen to me! Can’t you do something?” You know, this story that says there is a wrestle between life and death. Right up until the end it has to be this kind of tension.

Yeah. Well, you know what? There are some important subtleties. Like I want to be creating these pathways so that dying with some joy left in your heart or peacefulness is possible. But one of the tricks in this work is that while you want to have this expansive sense of the possible, you don’t want to alienate people who don’t get there. Because in fact dying is still pretty scary. And dying can be filled with pain. And you may not be able to train your brain to live in the moment right up ‘til the last breath. So as we articulate these things together out in the world, the trick is helping this transformational joyful thing, setting the conditions for it, but not mandating it. I see my job as setting a stage, providing the environment for certain things to happen. But I can’t mandate what those things are. In fact, I have a lot of patients who aren’t really interested in a peaceful death. They see themselves going down swinging. I don’t see it that way. But I don’t want to alienate that guy. He’s the one who’s dying after all. And my job is to help him be what he wants to be through to the end. So yes joy, peace, yes. And we don’t want to alienate the harder negative stuff.

And what about the role and the place of loved ones in this? It’s a different experience for them altogether because they’re losing the loved one. They’re saying goodbye to them.

Yeah. It’s a related role but an importantly different role. I’ve spent a fair amount of time with families in clinic and at Zen and they suffer in all sorts of ways. As problematic as hospitals are, at least there’s an enormous expensive building designed for your problem as a patient. But the family are often in the way, there’s not a lot of space for them, their suffering is short shrift to the patient’s suffering. You’re right, the loved one must live on past the person’s death, and make peace with that and love other people again, remembering that person. But letting them go is really tricky. So it’s a huge piece of the job and especially if we’re interested in crafting this different society it’s all the more critical the loved ones go back into the world and are still around to help affect change. If they have a very negative experience and there’s no space for their grief, and their grief gets horns and teeth and they turn gnarled and shut down, that’s not going to help this cause by any stretch.

A grieving process is where your relationship with what you just lost sets up how you live on, and love on.

I get to love my sister who died in part because I grieved her. I got to sit with the pain of her being in me and gone at the same time until I got through a process where she’s still in me, the sting is gone, and I have a relationship with her. I think if you short-change that, you can cut off this potential relationship with who you’re losing.

When did you lose your sister?

I was in my senior year of medical school. I was 29, she was almost 33.

And you had a handle on that grieving process?

So actually as I was saying that to you I realised it was slightly aspirational. Some of the things I would learn about grief and dying are from the negative examples. I don’t think I did grieve her that well. Like when I lost my limbs, when I lost my sister, I was of the mind: “Get back on the horse, keep moving.” That’s what’s rewarded. I wish I had made a little more space for her in my day through a grieving process. I think there’s some real wisdom to traditions of hanging crepe for six months or a year.

I was going to say I remember as children we’d never understand the months of wearing black after a death in the family and the months of wailing, but there’s something in that.

You know? You are allowed to have this very strange experience of grieving. Of course it’s not all or nothing. I did certainly grieve Lisa. And my way was to go out in the woods and be reminded of the cycles of life through watching a leaf fall or whatever. And for her I kept re-framing it. It’s like, “I had 29 years with her. That’s amazing.” No time with her? Or 29 years? My choices weren’t 29 years or 80 years. Twenty-nine years is an amazingly long time. I’m so glad to have had that. So there’s a bit of re-framing so that I can make peace with the idea. And find a way to feel fortunate in it all.

Well this is something that’s right throughout your experience. This immense gratitude that you feel, even after great struggle. When I read about the train accident, losing your limbs, it was really inspiring to see how grateful you are for the gifts that it gave you.

Yeah.

But did that come straight away?  Or was that a process as well for you?

Long process. And I think one of my theories is that process could have been shortened if I had given grief a little more space. ‘Cause I think grief will wind its way through you whether you let it or not. I was 19 when I lost my limbs, and then really I spent much of my twenties in some amount of, well, confusion—in the negative. But also kind of open-ended exploration, like I just threw away whatever I thought about life before then and felt very open to what was next with this new, weird life! I cultivated a curiosity for these new shoes that served me very, very well. But it took me about the length of my twenties until I could really circle back to some of my best friends in college who had a lot to do with saving my life.

Is that right?

Yeah. I felt I had a huge debt to them. I knew I wanted to feel grateful for being alive, but I didn’t really feel grateful. It was like a thought versus a feeling. But I was aspiring to it.

I was trying to find a way to feel gratitude. And it took me a long time to get beyond the shame, beyond feeling like I owed all these people so much for helping me live.

So it was really in my thirties that I arrived in the gratitude that you point to now. Which is very real.

I wonder, hearing you talk, I mean people talk about this optimistic gene. Do you think that’s what you had?  Or is it something that is in us all, that potential to see the light in everything.

I think it’s in us all. I suppose we could probably find some exceptions around sociopaths and other pathologies that might make this harder, or easier for some individuals. But it just seems like the truth of it. I don’t have some spirituality that’s particularly mystical or exotic. Spirituality from a high-school chemistry and physics class is plenty. Like, “Wait a second, we’re part of some enormous galaxy when that galaxy’s one of a couple of gazillion galaxies in a universe… wait, what?”

[Laughs].

Similarly, when my body dies and I decompose and there’s a transfer of energy and I become a blade of grass or part of the worm, like, that’s just fact. That’s the kind of immortality I can wrap my head around. And so there’s an empirical nature to this in that we die and yet part of us doesn’t die. This body dies but there’s some transfer of energy. We become part of some expansive unknown. You can watch people live on in each other’s hearts. You can watch these threads of immortality. You can just prove to yourself that life is incredible. And you can prove to yourself that you’re part of something larger. So it wasn’t a belief system I had to cultivate, it’s really the discipline of looking around me.

So this accident obviously was a huge turning point in your life. I’m curious about how it changed you. Obviously physically it did, but how else, going from able-bodied to disabled?

It’s interesting, in some ways the accident changed me and in plenty of ways it didn’t. It changed the way people responded to me, what thoughts I had, my sense of self. What was really interesting for me as a suburban white kid with a lot of privilege—I was a student at Princeton, I had all this stuff that on paper sounds like “boy, you are one lucky sucker.” But I’ve always had access to sorrow and misery and a darkness since I was a child. Just an awareness that suffering was everywhere. But as a white suburban kid, you don’t get any credit for suffering [laughs]. So I didn’t feel a sense of ownership around my capacity to suffer, to love. Then the accident was like, Whoa!  I guess I’m tougher than I thought! And people can see it and at least give me some credit for my suffering. You’re kind of helped, undermined by the “oh well you just had the world handed to you as the white rich guy” thing. So it just gave me a confidence that I didn’t feel I had access to before the injury. Does that make sense?

Yeah it does, it really makes sense. But not all of us are going to have that either! So I think that I’m in your situation before the accident. I don’t know suffering in any deep way. Right? Except for the mundane. And so I think I have a tendency to  dramatise the little suffering I do experience because I don’t know it in any bigger way! It’s just something that I’m seeing now, talking to you.

Well, let me say, part of the realisation was, Oh I had this very dramatic thing happen. But in fact whatever it taught me, I already knew. Whatever pain, and there was heaps of physical pain and other kinds of pain that I had never felt before. But it was variations on a theme. It’s not like I thought life was one way, then this happened and it turns out it’s another way. What I’m saying is it gave me license, it gave me agency to accept and own it. But if I were really smart I wouldn’t have needed to lose three limbs to own my suffering. So one of the messages is: “You don’t need to experience this horrible dramatic thing.” I’ve cried more over lost friendships than I have lost limbs. I’ve cried more over lost wallets than I have lost limbs. We are relative beings. And so on an average day, we will fill this space with some panoply of emotions no matter what the triggers may be.

And if we don’t have a huge thing to be miserable about, we’ll find something small to be miserable about. Because I think we’re pretty hell-bent on experiencing some full range of emotion that makes us feel human.

Beautiful. And the accident did change the path you were on, vocation-wise. You were studying languages I think and changed majors to art history, which  I thought was interesting. Because you’re really curious about perspective.

Yeah!

And then to medicine. So maybe just tell me a bit about that thinking.

So it was sort of a hunch to switch my major when I was in the hospital to art history.

Right! And I read you’re quite wise to gut instinct, you’re fond of it.

Yeah! I’ve had a funny relationship to it. I also have a long tradition of ignoring my gut and not trusting it. But there have been some really precious moments in my life where I went with my intuition and it served me very well. In fact, if anything I feel like that’s one way I’m growing. I’m getting more responsive to my intuition and gut over time. I hope, at least. I think I am. It’s an aspiration. Because your body knows stuff, your gut knows stuff. It’s awesome! And I’ve spent a long time on my prefrontal cortex. Too much. So it’s an amazing tool. But it’s something to use wisely and sparingly even. So where the hell was I going there?

Sorry, the hunch that you had to change majors.

Oh yeah! So I was sitting there in my hospital bed thinking, Well now what? Like, first of all, am I going to get laid again?

[Laughs].

But then, What am I going to do for a living? How am I going to get through school?  The smart thing, and I’ll take some credit for it, was seeing that this remaining two-and-a-half years of college was an opportunity to wrap my head around my situation. And to really lean in to learning as a therapeutic tool. I had the support of a beautiful Ivy League environment to do this. It was a perfect place to be experimenting with my sense of self. That’s what undergraduate seems to be about at its best, or at least liberal-arts education. I took that very seriously.

So the mindbender was: “I have just lost parts of my body. I’m dismembered. But am I less of a human being? Do I have less of a life ahead of me? Well, fuck no.”

While I knew that wasn’t true, I needed to fill in some blanks. It was like, “What do humans do? How do we deal with our peculiarities, our ability to reshape our lives, our perspectives?” Humans do this weird thing called making art. People reflect on their lives and reproduce some experience on a canvas or in music. That seems very relevant to what I was trying to do for myself. So this idea of perspective became very apparent. My situation was a work of art, but how you choose to see it, how you fill in the blanks as a viewer makes all the difference. So much of my situation was out of my control. But what I could control was how I saw this new body. Do I look at my arms and say, “Fuck! I’ve only got one hand!” Or do I look at my arms and say,
“God I’ve got this awesome one hand and this sort of stumpy thing to help guide me and do other things with.” Like, that’s really great.

I love that it’s through art that you discovered that. That it’s through art that you realised that we can live out our full potential.

So lucky. And that’s why I see such a place for art and aesthetic and beauty at the end of our life, because it awakens our senses and imagination to what’s possible.

What is beauty to you?

I’m glad you asked that ‘cause I love talking about beauty and I know people think of it in their own terms. One thing I’ve learned from my philosophical friend and dear old writing partner, he taught me a lot about Kant,  is that beauty is something inside us. Beauty is an emotional response we have.  So we can look at a mountain and the mountain isn’t necessarily ugly or beautiful, it’s just a mountain. The sense of it being beautiful is in us. We complete that picture. Kant talked about it: that beauty is something we confirm. Also, to me, beauty is something that insists upon itself. Like a pile of shit can be beautiful. Just insisting on being that pile of shit in the middle of the road like that. So in that sense beauty is this much more expansive thing that can be provocative, but it’s essentially whole.

When my body dies and I decompose and there’s a transfer of energy and I become a blade of grass or part of the worm, like, that’s just fact. That’s the kind of immortality I can wrap my head around. And so there’s an empirical nature to this in that we die and yet part of us doesn’t die. This body dies but there’s some transfer of energy. We become part of some expansive unknown.
BJ Miller

And where do you personally find beauty?

[Points Skype cam to a vista of valley and ranges behind him].

Oh my goodness! Wow!

So that’s out my kitchen window. I live in Marin County for a reason. Because it’s so frigging naturally gorgeous. In some way it’s easy to appreciate. But do you know I grew up in the Midwest and in the Midwest, it’s flat, and it’s a much subtler beauty. So when you come out to places like California the landscapes just pop!

Cause we humans, we love contrasts. It’s another thing I love about my injuries. What I love about my pain is that experiencing all this hard stuff is such an amazing foil for all this beautiful stuff.

Knowing that we love contrast, I like to set the boundaries way into the extreme, by mountain biking or whatever. Just one more thing about beauty. For me, I love keeping it rudimentary. Like I find beauty riding my bike.

Just the fact that we humans have created things like bicycles and have these little gizmos, I love that. I find beauty in being kinetic and mobile, I have a new-found appreciation for what it means to be mobile. Which I love, love, love.

How do you confer the word “beauty” to that experience then?

Well, we’re such weaklings in the natural world. Right? We have to make clothes to stay warm. We have to build a roof over our head. We have to create all these things to keep us safe. Unlike lions or even dogs who can walk around naked and get by just fine. But what that’s done is primed our imaginations as the survival tool. So we can create things like bicycles. I lose my legs but someone created prosthetic legs for me to walk again. I can’t walk very far but I can drive for miles because I have a car. So the beauty there is, “Wow, look how humans have responded to their weaknesses! Created all these adaptive tools to stay engaged on this planet, because we wanted to be here for as long as we can!”

So great! And so, to go back, you study art history and then are more and more compelled to study medicine, which you do. But you find yourself challenged by traditional Western medicine and approaches to healthcare.

Just in relation to… I mean, traditional medicine saved my life. So I see the utility in a disease-centric, a problem-centric model of medicine where teams of skilled people descend on the problem and do all these incredible acts of devotion to get you through. I think I benefited majorly from that. I have loved much of my training in traditional medicine. There’s a lot of good to it.

Then I discovered palliative care and hospice which really flesh out what traditional medicine has left out. What happens too much around here is the sort of hyper-polarised good thing/bad thing. Medicine evil. Drug companies evil. That kind of shit drives me bonkers ‘cause you take the good parts and leave the bad. So medicine’s great for acute trauma. Medicine’s great for infections. But don’t confuse it with  a philosopher. Don’t confuse a doctor with an artist. There are other disciplines that round out the experience of living with illness. So if you’ve got something that’s treatable and curable, traditional medicine’s awesome. Just don’t expect too much out of traditional medicine when it can’t fix you. That’s where palliative care and hospice come into play. Now we’re trying to change traditional medicine so that it can accommodate its own failures and not abandon people just ‘cause they can’t  fix them. There’s this scientific method of “see the problem, isolate the problem,  focus on the problem.” That works great as long as you can actually fix the problem.  And increasingly medicine is confronting diseases it can’t fix. We have to come to terms with that. So I am advocating for a system’s redesign. Moving away from the disease-centric to a human-centric model, taking into account all that it means to be who you’re being and what it means to experience illness.

You’ve said, “The most potent form of medicine is to come from a place of love and kindness.” So it’s really emphasising the power of human connection in caring for the diseased or dying person. What are those healing benefits?

I think part of it is a conceptual thing. I think the system needs to be revamped, doctors need to learn different skills. I’m interested in the difference between healing and curing. There’s problems with all this language, but I think healing is an internal process. Back to me, just because I know this experience, I was in some ways not fixable. Those limbs were not salvageable. They’re gone. Right? So in some ways I’m dismembered, I am less than whole. But from my own sense of self in the world, I can be whole. Even as a dismembered person I can be whole. That’s an internal process, that’s an internal achievement. That’s healing.

So dying people can be healed even as they’re dying. And if you don’t make space, if you don’t tease that out, if people just lump healing and fixing together, then you’re kind of screwed.

That’s really a key distinction. Yes, cure when possible, but always hold out the potential of healing, of feeling complete even if not “fixed” medically speaking.

Tell me about the care you received after your accident.

It was great. I mean the burn unit at Saint Barnabus Hospital in New Jersey, these guys were, like, amazing. And they were judged, granted, by their technical skills, which I appreciated very much. But it was also interesting to note what their kindness brought to the mix. Just someone being sweet. Someone daring to look at me in the eye. Someone daring to look at my wounds  and not run away. That’s where the healing is. That’s what made me feel like, Maybe  I still belong in this world. Maybe I’m going to be okay. And that was all achieved by these transfer moments, a look or a smile or some act of kindness, from the nurses, janitors, all sorts of places. And then watching my family and friends not run away, sit awkwardly with me as I tried to deal with my own anger, and they tried to deal with their own repulsions. People just didn’t run away. And people made it clear that they loved me not because I used to have arms and legs, they loved me because I was just dealing with my day like they’re trying to get through their day, too. And that was so wonderful. It was so demystifying. Respect can be such an amazing force.

So have you felt “othered” by your disability?

I think it’s something I’m working out every day too. We all are. There’s some joy in feeling like the other. This is the problem with pity. It can feel like a sweet, saccharine thing. But pity relies on you being this other thing. I remember feeling like people didn’t expect very much out of me with all the injuries. And I could see a path, if I wanted to, I could just wallow, not do much. I had a grand excuse there and I could have taken that excuse. It’s like denial. It’s not just a purely negative thing, it’s also a very useful tool, and this way that we cultivate “self” as distinct from “other” actually is also adaptive on some level. It just runs away with us sometimes. So respecting this role is sort of step one. But also pushing it back. Pushing beyond it and working with it is also probably step two. And for me that discipline was seeing my pain as a variation on a theme. So my pain was not so importantly different from yours. It was different in detail, but pain is pain on some level. So the rigour was not separating myself, not embracing the role of the other, and therefore insisting on having everything in common with people around me. That’s the seduction if you go down the other path and buy into the idea you’re somehow special or different. You’ve just unnaturally isolated yourself from the world around you. Part of me wants to remove myself all the time from all sorts of stuff. But it’s not very interesting or fun.

When I was researching you, I found it really hard to wrap my head around how you pulled through after the accident, and whether I would be able to live on like that. But I can see now how pivotal that shift in perspective has been for you, that this is where your resilience has come from.

Yeah. You know, I look back on things and I’m kind of like, “Wow I can’t believe I got through that.” But then it would come down to these moments which were actually very mundane. It would be like, “Well I could die. But that’s just not very interesting. And if I’m dead I’m kind of really dead. And so since I’m going to be alive I might as well start taking it seriously and actually play with it.”

The resilience was that uninspired in a way. Like, “I could die, but, eh, then I wouldn’t know who’s going to win the superbowl next week, then I wouldn’t eat pizza again.”

That’s the shit that pulled me through. It was also this beautifully compelling feeling that even when I don’t see joy in my life today I know people around me do and they’ve worked very hard to give me this day. So I’m going to take this day seriously on their behalf even when I don’t feel like it. Knowing that I was loved and feeling some responsibility to those people who love me also was part of getting through the day.

I’d love to hear about some of the relationships in your own life. You have a wife, is that right?

Well, we split up a couple of years ago. Short marriage, long love.

Oh right.

We’re like best friends now. I mean, for me, friendship’s the highest high. I keep trying to force myself into one-on-one relationships and have a marriage or something, that this is the pinnacle and everything else is less. I just want to love much more broadly.

Interesting.

You know, I’ve watched myself in one-on-one relationships with girlfriends or my wife and it made me possessive, jealous, less open, less caring. Everything went the wrong way. All on behalf of keeping this dynamic special and important. I’ve had to let go of that shit. I can love you as my friend, and just wish well for you, not be threatened if you go do this or love that person. So I’ve had incredible friendships throughout my life. And because of some of these dramatic stories—my sister’s death, my injuries—there have been moments where friends have really shown up and rallied. So they have these extra layers of intensity. And I want to honour that.

And as a caregiver yourself, forming deep and real relationships with patients, how do you take that on? How do you replenish doing what you do every day?

Yeah, I’m trying to figure that one out. Burn out is a big problem in medicine and palliative care. I mean yes, for all our talk that dying is part of living and it’s happening all around. All true. But then there’s also the decisions we make throughout the day of where to focus our attention. So if your frame of reference all the time is death, things can get kind of wonky.  And if you’re not careful, your world narrows to just the pain. I mean this is the double-edge of empathy. We now understand that if you’re empathising with me, you’re feeling my pain. You’re suffering too. So as a clinician when you see 30 patients a day, all of them suffering, and empathy is part of being good at your job, well then you’re just heaping shit on yourself!

Is that what it feels like?

I mean, you have to reconcile that math. So if I’m going to devote my professional existence to this, that’s my mission, I have to make space for the other side. That’s getting out in the woods, getting myself out to the light, being in a garden where I couldn’t kill a plant if I tried. It’s like life bounding out of the hills around you here. So I take a literal view. I try to counterweigh it.

You know, for me, intellectually, I know I’m going to die. Right? But I’ve never been close to death like that, and we’ve been talking about how we can live more fully if we really feel connected to that experience of dying. But I’m not sure how I embody that feeling.

Do you appreciate things?

I do, yeah. I do. I appreciate relationships, my family, nature.

Well I guess I would challenge you. I would say part of appreciating something, part of it feeling appreciable, precious on some level, has a lot to do with the fact that someday it will not be there. So I think we take things for granted. Friendships, whatever else, we don’t respect that some day they’ll go away. We just presume they’ll always be there and that ends up a disrespectful relationship. We can talk about death all the time and it’s inherently abstract. Yeah I know I’m going to die. But I’m really still very clearly alive and it’s not likely I’m going to die tomorrow or next week. I could. I watch this in my patients. Especially the patients I see over months and years. We start talking about death but it’s inherently abstract. Because they’re not really dying in this way. They still have an indeterminate relationship with the future. When you get to the point where you know you’re going to die within months or weeks or days it’s like a spectrum from abstraction to reality. That is an experience. And there’s only so much you can do to, you know, fake that experience, test it. It will happen. When you’re dying, you’ll know. So I feel like to avoid regret is the best thing any of us can do to prepare to die. Live well while you can. ‘Cause when it’s really hard is when I talk to patients who are filled with regrets. “If I had just wrapped my head around the fact that time was short, then fuck! I would have done this or that!” Otherwise this is inherently abstract. We can come up to the edge but we can’t really get there.

Do you have regrets?

Well, on the macro level, no, I’ve loved everything, all of it. True. But I’m also a human being with neuroses. Thanks to my patients and our conversations I know better than most that I should not be wasting my time on things I don’t care about. But I do it all the time. The proportion of time spent with work versus friends—I’m really right to recalibrate my worklife in some way. Because I can see the potential for regret crescendoing. And so while I still have some time, I need to make some changes. But that’s a constant trimming the sail; that’s a maintenance issue. I’m just a little farther out on some energetic winds than I’d like to be, I need to reign it in a bit.

Nathan Scolaro

Nathan enjoys getting elbow-deep in sentences, pressing and pricking them like a Chinese doctor until the blood is flowing just right. He hails from Western Australia, where he first experienced the joy of putting together a magazine, and now indulges his love of thoughtful, life-giving storytelling by bringing Dumbo Feather to life once a quarter.

Photography by Angela Decenzo

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