When BJ Miller was a sophomore at Princeton University, he climbed atop a commuter train that had been parked for the night. What began as a lark took a tragic turn when 11,000 volts of electricity suddenly surged through his body.
"There was a big explosion, a big flash of light, and I was thrown ... quite some distance," Miller says. "My body was literally smoking."
Miller survived that 1990 accident but lost both legs below the knee and half of one arm. Coming close to death and dealing with pain and disability inspired him to go into medicine and the field of disability rights.
As a palliative care physician at the University of California San Francisco's Cancer Center, Miller draws on his own experiences to help people with their physical, emotional and spiritual pain at the end of their lives. His new book, with co-author Shoshana Berger, is A Beginner's Guide to the End: Practical Advice for Living Life and Facing Death.
Miller says it's hard for him to regret the accident that changed his life.
"So much has flowed from it," he says. "If I'm honest, there's a little bit of pride. ... [What] I'm a little proud of is the decision to work with this experience over time, to dig into it, to mine it, to find a creative energy in it."
Interview highlights
On how growing up with his mother, who had polio, influenced him
To grow up around disability from a young age, to have that carved into your worldview was, you can imagine, hugely helpful for me as a 19-year-old kid with ostensibly everything going for him. ... To know in your bones that you're on borrowed time with being "able-bodied" — I knew that. I didn't have to learn that, and that was a huge advantage. ...
In my early childhood, she used crutches and a brace and was extremely physically capable. And then, over time, from the early '80s on, it's just been a very slow decline to the point now where she really requires an electric wheelchair, has a little bit of ability to stand, but not for very long, etc. ...
People think you're Jesus because you've gone through something special. They treat you like you've got special knowledge, or they treat you a little bit like Frankenstein. Of course, those two responses are related. Neither of them is accurate. But that's the kind of vibe you can get — a lot of us who have disabilities know very well. And I had seen that. I knew how to read that, thanks to my mother.
On deciding to pursue palliative medicine
Disability is not something to be ashamed of. It's not something to overcome, to put behind you — it's something to work with.
I started doing a little work [in] arts advocacy and disability rights. But basically ... thanks to the disability rights movement, I realized that disability is not something to be ashamed of. It's not something to overcome, to put behind you — it's something to work with. It doesn't go away. I can't overcome this; it's my daily experience. So instead the compulsion was to work with it — in a professional way that I could make a living. And medicine lit up, theoretically, as a way where I could use these experiences and pay them forward in some way or draw from them — not overcome them and put them behind me.
On palliative care and the treatment of suffering
That's why I think hospice and palliative medicine is so interesting. You don't just treat pain. You treat suffering. Suffering is a multiheaded beast. ... Basically palliative care is the treatment of suffering, versus the rest of medicine as the treatment of disease. ...
So what is suffering? Well, suffering, there's a lot of different ways to define it. Cicely Saunders, the grandmother of hospice work, she called it "total pain." That [it has] a physical component, a psychological and emotional component, a spiritual component. It's a multiheaded entity. One might say it affects how you see yourself. It affects your identity. I've come to understand suffering as a wedge — a gap that opens up in you. The gap between the world you have and the world you want. So, it gets at your desire, it gets at your longing, it gets at what you're lacking.
On finding the balance between life and death, and joy and sorrow
Coming out of the back side of the experience of my own injuries, my own brush with death, etc., I came out of there eventually holding life much more loosely. So it didn't teach me to cling to life with my fingernails, that that was the way through. It taught me some adult trick of simultaneously holding on to opposing emotions. ...
Grief does this. But anyone who's dealt with pain — chronic pain — when the clouds part even for a moment and you have the absence of pain, it's a stunning feeling. I remember feeling that I really wanted to stay close to that interface between joy and sorrow, between pain and pleasure, between life and death. It felt like such a rich, rich place that I had been forced into. I had to hang out there for a while, but I became a little enamored of it, because from there I could just as easily get to sorrow as I could get to joy. And that to me has felt like a kind of a dexterity or an agility, something very good. ... So death is close by, pain is close by — so is the rest of life. So is the good stuff. That zone, it helps me imagine what my patients are going through, being close to death.
On how he helps his patients with both their fear of dying and their fear of being dead
Fear helps point to the things that you care about, the things you love, the things you're afraid to lose. Fear is a big important subject and really requires and demands looking at. The sooner we do, the better, because oftentimes it's not so darn scary. ... It's helpful when patients will confess some fear to me. ... People say, "Actually I'm afraid of the pain I imagine is going to happen during the dying process." So the fear of dying, the fear of the dying process. That's an important distinction, because any hospice and palliative medicine team can do a lot to quell the pain and the sorrow that happens during the dying process. We have medications. We have ways of being with each other. We have ways of positioning your body. There's all sorts of things to do, so suffering is not necessarily part of the dying process. And there's a lot of reassurance. ... We understand that process pretty well, and there's a lot we can do. So that's an important distinction. That's pretty concrete. That's knowable.
Now, some of my patients will say, "That's one thing. But I'm actually afraid of being dead. I'm afraid of being in the ground. I'm afraid of what comes next or whatever else." Then my response, of course, is, "Well, gosh, I don't know what that's like either. But let's think about it. Let's talk about it." And when we push on that one, I think most of us can get to a place where we realize that we're not just our bodies — and our bodies, once they're dead, aren't likely to be feeling anything.
But when you push on that one, you can open up [about] what is known as [the] modern acronym of FOMO — fear of missing out. That's very often at the heart of people's fear of being dead — like all that they're going to miss. And this idea that the world is going to continue on without them, all the things they're not going to get to see, etc. But if you go there, then what has that done? That has pointed us very squarely to all the things we love and care about. And then that becomes a nice compass for our way forward, how we're going to live until we die. The fear there, the things we are afraid to miss, are the things we really should uptick in terms of our attention now.
Sam Briger and Joel Wolfram produced and edited this interview for broadcast. Bridget Bentz, Molly Seavy-Nesper and Deborah Franklin adapted it for the Web.
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