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 Th

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 thing 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 stuff 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.

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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 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.