Ep. 66: Bruce (BJ) Miller, MD – Life After Amputation and How to Thrive in Adversity

You may lose parts of your physical body – but you are still you.

Many – or most – people build their identity around their bodies. That is normal and natural – the body is the physical YOU. But what if you have an accident where the end result means that you lose a limb or two or three? Who are you then?

Please know that you may lose parts of your physical body – but you are still you.

This is a hard lesson for most people to even think about, even though we have come a long way in normalizing disability and amputees. And speaking of things that are hard to think about – how about dying?

Dr. Bruce Miller has vast experience with both. As a triple amputee since age 19, he’s lived through the positive changes in society, worked with other amputees, and knows how important it is to navigate through everything that losing limbs brings, both mentally, emotionally, and physically. And as a palliative care physician, he’s witnessed thousands of people face their death, and he’s one of the leading voices in reframing our discourse and views of dying.

In this deep, vitally important talk, you’ll discover:

  • Ways you can manage ‘phantom pains and sensations’ in body parts that are no longer functioning or you have lost.
  • How to face everyday struggle and turn it around.
  • Why pity will cause you problems, but empathy will empower you.
  • How to cope with different kinds of loss so that you can still live your life to the fullest.

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Show notes & links

The show notes are written in chronological order.

  • Dr. BJ Miller’s website: http://www.thecenterfordyingandliving.org/
  • Dr. BJ Miller’s TED Talk: What really matters at the end of life [watch it here
  • Ramachandran, V. S., & Rogers-Ramachandran, D. (1996). Synaesthesia in phantom limbs induced with mirrors. Proceedings. Biological sciences263(1369), 377–386. [read it here]

00:00 – excerpt from the episode
01:33 – intro (listen to discover a little more about your host. Martin will tell you a new lesser-known fact about Dr. Maya)

02:14
Dr. Maya Novak:
Many people build their identity around their bodies. Probably most of us do it at least to some extent. It’s normal and natural – I mean, this is the physical YOU. But what if you have an accident where the end result means that you lose a limb or two or three? Who are you then? Please know that you may lose parts of your physical body – but you are still you. This is a hard lesson for most people to even think about, even though we have come a long way in normalizing disability and amputees. And speaking of things that are hard to think about – how about dying? Dr. BJ Miller has vast experience with both. As a triple amputee since age 19, he’s lived through the positive changes in society, worked with other amputees, and knows how important it is to navigate through everything that losing limbs brings, both mentally, emotionally and physically. And as a palliative care physician, he’s witnessed thousands of people face their death, and he’s one of the leading voices in reframing our discourse and views of dying. We got connected in 2020 and had a deep and vitally important talk on my second summit. And because this interview is so valuable I released it now on my podcast The Mindful Injury Recovery Talks. Please enjoy and let it help you.

03:46
Dr. Maya Novak:
In this interview, I’m joined by Dr. Bruce Miller – BJ Miller – who is a palliative care physician at UCSF and a leading voice reframing society’s discourse in the field of death and dying. In his work in end of life care, he seeks to connect art, spirituality, and medicine. His TED talk, which is one of my favorites, What Really Matters at The End of Life has been viewed over 10 million times, and as you’ll hear, he has an incredible story himself. He has been featured on multiple interviews and podcasts, including Oprah Winfrey, PBS, Fresh Air, and the New York Times. BJ, thank you so much for joining me.

04:30
Dr. BJ Miller:
Thank you for having me! It’s nice to see you.

04:33
Dr. Maya Novak:
I’m super excited about this interview, and before we go into the juiciness, can you share a bit about yourself, a bit about your story, and also as I already said, you have an incredible story yourself. Being a medical doctor, did this accident that you’re going to talk about, have anything to do with you becoming a medical doctor?

05:02
Dr. BJ Miller:
Well, absolutely it did. Yeah, I had no – I had no interest in medical science before – before I became a patient, really. So yeah, that started the whole thing off. Yeah, where to begin? I can you a little bit about the accident itself, and sort of how that played out. It was November of 1990, I was a sophomore in college and some friends of mine, and I were screwing around on a train. This was in New Jersey and the electric wires run overhead, and so we climbed up on top of the train. It was parked. It was just sitting there. We just climbed up on top of the train like you would climb a tree. And when I stood up though, I had a metal watch on, the electricity arced to the watch, and that was it. So, 11,000 volts later, I had severe burns. I came close to death and all that stuff eventually had three limbs amputated from that. But, you know, survived. It took many months of all sorts of things going on. In the burn unit and then in rehabilitation and yeah, we can talk about any of it, whatever. But that’s sort of the overview. So, that was sophomore year in college, and then when I went back to school, I’d focused on my studies of art history. And that too – I’m naming little tips of icebergs. We can talk about any of it, but that was a very big decision to study art, and that got me more and more interested in humans. And then after college, I had to figure out how to make a living and what to do with myself, and so medicine lit up as way for me to exercise all that I had learned both as being a patient in the medical system but also become a disabled person in this society – and an obviously disabled person. And all of that sort of got me interested in healthcare and in medicine - and in both what medicine can be and also the problems of medicine. It’s a screwed up system in a lot of ways. So anyway, I jumped into that and went through medical school, and that worked out. And then eventually I discovered palliative care and hospice, and really, that lit up for me and away I went. So anyway, that’s just the broad overview, like I said. We can talk about any of the details.

07:33
Dr. Maya Novak:
Yes. So, you said in regards to your three amputations – the legs and the arm. Did the amputations happen right away? Or was that a process maybe of a few weeks, months, or how did that happen?

07:51
Dr. BJ Miller:
Yeah, it was all – the amputations themselves were surgical. The burn – the way electricity works is you burn from the inside out. Electricity enters your body, and runs around and tries to get out. And so, if you had seen me that night, you would have just seen blackened skin. But then the amputations happened in the operating room, and there were probably a series of seven or eight surgeries. I can’t remember, but in those – the first one was maybe about a week in, and then the last surgery – I’ve had my last revisionary surgery maybe 20 years ago. So, there’s been a series of surgeries. But most of the stuff happened in the first three months.

08:34
Dr. Maya Novak:
May I ask what was happening in your head when you learned that amputations were necessary?

08:43
Dr. BJ Miller:
I remember – it’s a funny feeling. I remember – so I was – the first several days I was on a ventilator. I was sedated, but I was awake. I was conscious. I don’t remember a lot of the details, but I remember the night before the first surgery and I remember talking to this surgeon and I just – I remember having this feeling that like I think he thought he was telling me some very dramatic news, that in the morning we were going to the operating room and I was going to have some amount of amputation. And I just remember this weird kind of feeling of like not being surprised. It was sort of like – I don’t know if that was the drugs talking or if I had some sort of insight into my body that I kind of knew what was happening. I just remember not being surprised. And I also remember not being terrified. I wasn’t really scared and I don’t know – I may be misremembering this, of course…

09:55
Dr. Maya Novak:
[laughs] Yeah.

09:56
Dr. BJ Miller:
Number two, I was heavily medicated. That could have something to do with it. But on some level, it also had something to do with my – the fact that I grew up with a disabled mother.
My mom had polio and I’d been around disability my whole life and it wasn’t – I think for some people in their worldview the idea of losing a body part or getting a diagnosis is just – it completely shatters the way they see these themselves. But I’d inherited sort of the worldview that totally included disability as a normal thing. So on some level, there was some immediate acceptance of this fate, and I didn’t think that my life was over. I didn’t know that I wanted to live my life. I didn’t know what I was going to do it. There were times where I didn’t want to deal with it. But I knew in my heart or in my bones that I still belonged on this planet, even if I was missing some parts. And I think that’s mostly due to my family.

10:55
Dr. Maya Novak:
Oh, I love this story because exactly what you mentioned, a lot of people might feel that way, now my life is over.

11:05
Dr. BJ Miller:
Mhm.

11:05
Dr. Maya Novak:
But because of your experience, it was, yeah, it’s just life. So, I’m still BJ. I’m still lovable. I’m still here. I still belong.

11:16
Dr. BJ Miller:
Yeah.

11:16
Dr. Maya Novak:
I love this story. So, can we talk about this – being this is the end of my life now, that I don’t have an arm or a leg or many parts of the body?

11:29
Dr. BJ Miller:
Mhm.

11:29
Dr. Maya Novak:
What would advise to someone who is facing this and perhaps has this feeling that’s it? I cannot go forward with this or I don’t know how to go forward with this?

11:45
Dr. BJ Miller:
Well, one thing to point out, I think, is whatever I say and whatever my experience has been it’s just that. And, obviously, we’re talking about years – months and years compressed here into a few minutes. So, I just want to be clear for your listeners that if this sounds too tidy, if my explanation sounds a little too neat, well, I agree. There’s a lot of sorrow and a lot of heartache and depression and all sorts of things that came with this. So, I don’t want anyone to accidentally believe that this somehow – if this isn’t easy, like what’s wrong with me? Like sometimes – you know. I had plenty of dark nights wondering why the hell I was – wondering whether I was interested in life. So, I just want to note that. And each of us will find our own way. Sometimes people need to feel sorry for themselves, really. I had periods where I just needed to just ‘poor me’ because that’s how I felt.

12:51
Dr. Maya Novak:
Mhm.

12:51
Dr. BJ Miller:
And I was – it was honest. I knew that wasn’t a healthy place to hang out. So I knew – it was like the feeling was I could see the land. I was too out to sea, but I could see land. My family and my friends were holding that land. I could see it. I knew there was something there for me. I just had to get there myself. I had to feel it myself. I knew I belonged intellectually, but I needed to feel like I belonged in my gut, and that took some time. But I think, for me, so much of the gist came down to, like you said, I am BJ. I am whatever BJ is, whatever this little life is, whatever my go is, whatever the worlds are flowing through me and outside of me. I knew that that identity didn’t reside in my hands. I knew that my sense of self didn’t necessarily have to include feet. I knew that that was a construct. I watched my mother deal with a progressive disability and she loses function over time, all the time. She doesn’t lose body parts, but she loses the ability to work those body parts. And so I got to see life as a series of losses and triumphs and gains and different sorrows. One is my sense of self did not exist in my digits, in my extremities. My sense of self was malleable. We change over time, right. I was nineteen. I was in the throes of changing in other ways, losing some things, and gaining others. You start to see this process of loss and gain playing out all the time in us. Mines just sort of dumbly obvious. It’s just dramatic. I’m literally losing body parts. But no one I have met in my life hasn’t lost something. I’ve never met a person who hasn’t suffered. So one, my identity was not in my hands or my feet. My identity was malleable. And number two, which is very important, was I knew that I belonged. Like I said, people held the shore for me. That helped me. I was not totally alone even though I felt alone. That was a big deal. And number three, like I said, this was a variation on theme. This was not – mine was a dramatic example, but everyone I’ve ever known has lost something. Everyone I’ve known and ever known has suffered. And the discipline for me was not accidentally separating myself from those people. Not accidentally buying into the idea that my story was special. My story may be dramatic, but it’s a variation on theme that everyone goes through. That was a really key - I’d say understanding but you could it a belief. Maybe someone might argue with if that’s a fact. I see it as a fact. But that helped me not accidentally over isolate myself or separate myself from the world around me or see myself as different. Really it’s a minefield because either people treat you like Frankenstein and kind of avoid you because you’re kind of freakish and scary or people sort of overly project like that you’re some holy man because you’ve seen some crazy thing. And so people project all this sort of wisdom or not even wisdom, like this power on you. And both extremes are really unnerving. You’re trying to kind of just get to the bathroom and back and people are foisting all this stuff on you. But learning how to hear that, and learning how to be my own judge and jury. And learning how to see that those responses more reflected them more than it did me. And so not holding any of these feelings on these projects too tightly for myself. I’m rambling a lot here, this is a big question, but these are sort of the themes. These are sort of the pieces that set up that allowed me to feel like I belonged, and allowed me to hang in there across those moments where I really wondered if life was worth it. Because by the way, even when I had all my body parts, there were plenty of nights when I wondered if like was worth it. So, I guess that’s a longwinded answer to your question, and I don’t even know if I answered your question, but that’s something of an answer.

17:35
Dr. Maya Novak:
I love your explanation in regard to the loss of your hand and feet as just a different kind of form of losing something because we’ve lost something…

17:47
Dr. BJ Miller:
Yes.

17:48
Dr. Maya Novak:
… over time, so I love this explanation. I would love to dig deeper into something else. First, have you ever noticed that people felt a bit uncomfortable around you because you are not like “normal” so to say?

18:06
Dr. BJ Miller:
Yes.

18:06
Dr. Maya Novak:
Was it a bit like, oh, I don’t know?

18:09
Dr. BJ Miller:
Mhm, yes. Yes. So, that was 1990, and in the US, that’s right when the Americans with Disabilities Act came online and so there were laws protecting people with disabilities. And at that point, disability became a civil right, so that if you have a disability in this country, you have a right to access public transportation, etc. So, curb cuts for wheelchairs and lifts and all sorts of things become normalized by that law by seeing it as a civil right, and that’s a profound moment in a civil society, that’s a profound addition. But that was just happening when I was entering the ranks of disability. It hadn’t set up in the ethos of society, and it still hasn’t. But I’ve realized over almost 30 years I’ve watched this progress where you go from sort of an object of pity to something much more normal. And so, I got to see sort of all this transformation happening. But early days, in the early 90s when this sort of mentality really was less accessible, man, people would – I’ve watched people like freak out. Part of my own therapy was I forced myself to wear shorts. I forced myself to kind of reveal myself as a way to pry myself towards really embracing my body, even when I was uncomfortable physically. I felt people staring. There was almost like an activist in me that sort of demanded to just be out in the world, and it was hard. I mean there were moments it was painful. You’d really feel like a leper. Like you’d feel like people don’t want to touch you or be near you. It was profound. I remember like parents would pull their kids away from me, and like cross the street. And it was not a nice feeling, but that’s why it was so important for me to understand that that reflected their fears. I was the one living this. They were freaked out at the prospect that maybe that could happen to them. And on some level, even though it took me a while, I felt horrible when people didn’t feel good, but eventually – this is when your mind can come into play – and really, the discipline was reminding yourself that that’s their problem. That’s not your problem. And if anything, it allowed me to feel compassion for them. Here they are terrified at the idea of something happening to themselves and I’m the one living that idea. Like I felt for them, it seemed like a weakness in them. Here I was, ostensibly the vulnerable one, feeling actually kind of like the strong one. I’m saying all this now, again, it takes a while to get there, but that mindset really helped me. In a way, it got me to a place - over there years - where I have a sort of self-confidence now that I didn’t have that is much more durable than the one I had when I had all my parts. Does that make sense?

21:27
Dr. Maya Novak:
Absolutely.

21:28
Dr. BJ Miller:
Yeah.

21:28
Dr. Maya Novak:
Thank you for sharing this. Even though this is years and decades of healing, learning, being out, and pushing yourself, I think that your words are resonating with so many. And even if right now they feel a bit like, I don’t know if I can go through this, it’s like a light at the end of the tunnel. Like, okay, I can actually be okay.

21:54
Dr. BJ Miller:
Mm.

21:54
Dr. Maya Novak:
Perhaps not today, but perhaps tomorrow.

21:57
Dr. BJ Miller:
Yes.

21:58
Dr. Maya Novak:
So, beautifully said. You mentioned pity, and you mentioned also sympathy. So, what is your experience if we go a bit deeper into that pity? How did you react when people were like, oh poor you, or you know, anything like that?

22:15
Dr. BJ Miller:
Yes. Well, I think it’s really important there’s some distinctions to make. So on the scale, there’s pity, there’s sympathy, and there’s empathy and they’re all kind of – I’m sure other languages have maybe even more words for these distinctions – but it’s something on a spectrum of how we feel towards another person. Pity is sort of the lowest. We pity things that we don’t want to be, we don’t want to feel. The things we pity, we’d rather them like sort of just go away. It’s sort of like, ooh. It can look kind of like sympathy because someone is seeing your pain, but they’re recoiling from your pain. They’re running away from your pain. They’re almost disgusted by your pain. That doesn’t feel very good, but it takes a while to ferret this out. So, when I’m a patient, when I was fresh in this situation, I did feel pitiful. I did. There’s so many things I couldn’t do. My body hurt. It smelled funny. I sweated like a fiend. I was just – it was not a pleasant experience for me or anyone around me in some ways and that was just real. And I guess earlier, I did feel for sorry for myself. And when others felt sorry for me, I pitied me. That resonated with me. Oftentimes, people in the name of pity, people will give you special treatment. Like that happened a lot early on. People would – it happened more than once that people on the street would come up and give me money! It was so weird. Just hand me $20! It was just such an interesting experience. But also, it was kind of like – I remember a few times I’d be like I’d try to kind of talk them out it. And then finally I was like fine, sure I’ll take your money because you’re paying a toll, like you’re paying some penance for feeling shitting feelings about looking at me, and so you’re going to buy off …

24:13
Dr. Maya Novak:
Yeah.

24:15
Dr. BJ Miller:
… kind of unprocessed junk with giving me money. Oh, fine, I’ll take it! It sort of like that would help me, again, see how people were treating me is so much to do them and not me, okay. So, that’s the pity thing. It can feel that it’s sort of like saccharin or sugar. It can feel a little sweet at first, but if you look at what’s behind it is people are saying, oh, you don’t really belong here, you poor thing, your life must be so horrible. Now, on the other side, something more akin to like empathy, is where someone actually feels what you feel. Letting themselves feel what you feel, not recoiling or running away from it, not being disgusted by it, not trying to shut it down, but actually breathing with you and feeling what it’s like to be in your shoes for a minute in some way. And that’s such a beautiful with human beings. That’s sort of a more enlightened way to respond to another person. And it’s more enlightened because it’s more helpful to the person your responding to, but it’s more helpful to you because, in that moment when you’re empathizing, you’re allowing yourself to realize that life is complicated, life is hard. That I too suffer. I have pain too. You have to kind of touch on your pain. It’s like it forces a much larger worldview. It forces a much bigger spectrum of emotion in you. So, it’s better for everybody. It expands the capacity of the empathizer and feels nice to be the empathizee. But all these things kind of look alike when you first spot them, and then it took me a while to kind of ferret out who was pitying me and who was empathizing with. And the empathizers are the people to hang out with. They’re not the ones who are going to belittle you. They’re not the ones who are actually projecting their junk on you and belittle your life, literally. They’ll keep your life small for their own purposes. Whereas the emphasizers and the compassionate folks, they’ll see you as you are. They’ll accept you as you are, and they say hey, let’s go do, let’s see, let’s go see the world together. Let’s live. So it’s a very, very different experience, but again, it takes a while to discern it.

26:30
Dr. Maya Novak:
This is beautifully said. Also, I think this is beautiful advice for caregivers, for example. Perhaps a family member had an amputation. So instead of oh, poor you, it’s more like let’s breathe through this together.

26:48
Dr. BJ Miller:
Yes.

26:48
Dr. Maya Novak:
And let’s just be, and let’s sit together in pain or in happiness or whatever it is.

26:54
Dr. BJ Miller:
Yes. Yes, what you just described, my friend is such a healing thing. Because part of what’s so hard about these situations is you’ve got pain, you’ve got sadness, you’ve got loss, and then on top of all that, you’ve got isolation. No one wants to be around you because no one wants to be you, and it’s lonely as hell. But as you just described, if someone says, hey, I see you. I’m here. I see you and I’m here. It’s not like I’m pretending not to see you so I can be here. I really seeing you. I’m feeling you, and I’m here and I’m loving with you and I’m feeling with you and let’s go. That’s very different. And for caregivers, that’s a really important distinction. I think a note is if you feel pity welling up inside of you – I feel that at times. I’ll look at it. That’s usually a note to me. If I’m feeling pity when I look at someone or a situation. It’s a note to me to look deeper. What am I projecting on to that person? What am I scared of in myself? That’s a really key thing. So, when caregivers or sympathetic folks in the world, if you find yourself pitying, if that’s coming in you, that’s a note to look at yourself.

28:04
Dr. Maya Novak:
Yes, and this is so true. With triggers, most likely it’s not about the other person; it’s about, huh, what is this happening inside of me.

28:13
Dr. BJ Miller:
Yes.

28:13
Dr. Maya Novak:
So, let’s go inside and do that. It’s not like you are guilty of me feeling that way or anything like that.

28:20
Dr. BJ Miller:
Yeah, right.

28:23
Dr. Maya Novak:
So, for a while you were also working with amputees, right? In your experience, what might be something that people do not expect? Like a really surprising thing after the amputation? I’m asking because those who are amputated and are perhaps at the beginning of their journey, is there anything that it’s like completely normal that is happening, either physically, mentally, emotionally, spiritually, whatever, but they do not expect that?

28:57
Dr. BJ Miller:
Well, one thing that leads to mind is the very odd sensation of phantom limb pain. You may have heard.

29:05
Dr. Maya Novak:
Yes.

29:07
Dr. BJ Miller:
And sometimes it’s pain, but sometimes it’s itching, sometimes it’s a burning sensation. It’s a very – it’s quite a mind game, quite a head-trip. But for your listeners, if you don’t know, it’s very common that after you’ve lost a body part - literally to amputation or you’ve lost some functional neurologically, you might still have your hand but it’s not working anymore, etc. – you might feel sensations in the part that longer exists or works. So, for the first months and years, I would feel pain in my left hand. I don’t have a left hand, you know! So, you’re like – it’s crazy-making in a way if you don’t understand what’s happening because you’re feeling things in a body part that no longer exists. In the 1990s, phantom limb pain was still considered something of a psychiatric phenomenon. That was you being a little crazy, and that sucked. Thankfully, medicine has advanced to the point now we understand phantom limb pain is actually a normal neurological phenomenon. It has to do with our neuroanatomy, not our psyche. And that’s a really important distinction because early on, you would have these pains and people would treat you like you were crazy. Now, you’ll get a little bit more understanding. So, that’s important. But never the way the doctors are going to treat you. As an amputee, you will likely learn some dance with feeling things that are no longer there. That took a while to deal with.

30:49
Dr. Maya Novak:
So, how did you deal with this pain? Was there something specific?

30:57
Dr. Maya Novak:
We'll continue in just a moment. I wanted to quickly jump in for two things. First, thank you for tuning in. And second, I’m sure you have at least one friend, colleague, or family member who would very much appreciate this episode. So share it with them and help us spread the word. Now let’s continue…

31:18
Dr. BJ Miller:
Well, medications back then, we don’t have many meds actually much on the same list, but to some degree medications were helpful. Exercise, you’re basically reprogramming your mind to come to terms with this new body. So, while the nerves that used to run to my fingers – those nerve tracks still exist, they’re just truncated. But those same tracks exist, they just don’t go as far down into a finger anymore. And so your brain, it takes time and reprogramming for your mind to kind of come to terms with the fact that your body ends here and not out here anymore. So time by itself does wonders for phantom sensations. But also so does just engaging your body – working it, moving it, kind of retraining it as this object that moves through space. So medications, to some degree help. Just working your body and moving it around in space helps. Time helps a lot. Distraction helps a lot. Going to the movies, just thinking about other things, reading a book, whatever it is, or talking with others can be magical. And then I would say – what else would I put on that list? Oh, a very interesting low-tech thing is a mirror box. There’s a neurologist in San Diego, I think his last name is Ramachandran, but I believe he kind of cracked the code on the neuroanatomy of phantom sensation. So, he created these mirror boxes where you put your arm into a hole. And so when I look at my right in a mirror it looks like a left hand, right. It’s a mirror image. And so, as your brain is looking at this mirror, it’s seeing that I have two hands moving. And that kind of resets the brain and a lot of the sensation quiets down because the brain has kind of calmed into seeing that it still has two hands in this weird way. So anyway, mirror boxes can be very, very helpful too.

33:31
Dr. Maya Novak:
Yes, I love this, whether you call it a technique or exercise, as you just described. There are also videos you can see on how we react even if something is not real. I’ve seen videos of arms, for example, that are just made from cotton or whatever. And they hit it with, for example, a hammer, and the person’s reaction is like something is happening to me.

34:03
Dr. BJ Miller:
Yes.

34:03
Dr. Maya Novak:
Even though this not real. But this technique is just the reverse type of thing, right.

34:08
Dr. BJ Miller:
Yes. You got it.

34:11
Dr. Maya Novak:
So, what was for you personally the hardest thing after the amputation mentally and emotionally?

34:21
Dr. BJ Miller:
The great news is that you can reframe yourself. You can revisit how you see yourself in the world. You can play with your identity. You can change your fashion, your hair. There’s all sorts of ways we play with who we are, and how we present to the world. And so I’ve started by saying that we do that and that’s great and it’s so therapeutic. And to answer your question, the other side is getting to that place where you actually feel these things and you believe them in your bones. That was very hard. It took months and years. I really think, for me, there was a sense of peace at the two-year mark, and another at the five-year mark where I felt like my body and mind had kind of settled into this new reality. I remember when I would walk by – you know you walk by a window and you can kind of see reflection? For the first years, I would – oh, I would be shocked every time I saw myself. I was just – it just didn’t register as me. And I still see my reflection, and sometimes now, it’s just funny to me. I just can’t believe that’s my body. It’s just sort of like interesting to me. But for the first several years, it was jarring. There was something in me that had not really accepted this new body, this new life on some level. I don’t remember my dreams much, but I’ve heard a lot of people talk about after an injury or a disability that they may dream in their old body. And at some point, in their dreams now it seems like their mind has accommodated their new reality when they dream in their new body, and you can imagine that. That makes sense. Something deep in that person has really reconciled who they are. So, while the great news is all of these are malleable and you can reframe yourself and reinvent yourself continuously as a human being. The hard part is actually believing that, and doing that and riding the waves. So, there are plenty of periods where I was very alone. I felt sorry for myself. I was actually repulsed by my own body. I used to cover up my skin grafts because I was sort of ashamed of them. But by the fifth year out, that stuff had eased, and again, for me, the trick really was taking a playful approach. Like I went through a period where I grew my hair out. I like walked around in freakish clothes. I just tried to really embrace looking weird and actually make it my own, like own it. But that took a while. Anyway, that’s a longwinded and maybe a little redundant answer to your question, but that was the hardest, that was the most exciting. These transformations were very exciting and profound, but they were also very, very difficult along the way. Let me see if I have any other answers to that question though. Oh, I think there are some moments along the way that are part of that where you ostensibly are the one who’s lost. You are ostensibly the one who’s suffering. You’re being called again and again to be the teacher, to be the strong one. And it’s like Jesus, like we’ve talked a little bit about this. Other people presenting their fears to you and you’ve got to be the one who is compassionate to them for treating you like – not like shit – but for treating you like less, and that’s really hard. I remember there were times like romantically where I remember early on I got a few senses that I would be with women or women who were interested in being with me, but they also – eventually they talked themselves out of it. Like they wouldn’t be able to handle it or they didn’t want to take care of me when I was falling apart or older. There was something in my physical life and my complex emotional life that was just too much. It was too much to handle for some people. There were some painful rejection moments like that. But I have to say I’ve been pretty lucky too. I have had no shortage of access to people and people have been – there is as many people who have been attracted to my situation as there have been repulsed by it. But actually talking out loud with you thinking about that, that was also very hard. A lot of early energy that I received, it took me a while to realize, especially romantically, it was like that a woman was looking me as something to fix, as like a project. Like a phrase would come out, oh, here’s like a bird with a clipped wing and I am going to nurse him back to health and make him whole. And I’m sitting there going what? I am whole. I’m fine. Don’t … I want a friend, a companion, someone by my side, not someone like nursing me. You nurse someone and lovingly nurture them, but if your goal is to save someone or fix someone and that person doesn’t need or want to be saved or fixed, that’s kind of gnarly. And it took me – I had to repeat that a few times. It took me a while to really suss that out. Does that make sense?

40:02
Dr. Maya Novak:
Yes, absolutely. And it’s also like taking your own power away.

40:09
Dr. BJ Miller:
Yes.

40:10
Dr. Maya Novak:
Because it’s like people, if they see you as they have to fix you, it’s like but I’m okay, and then you almost feel that your power is going away.

40:20
Dr. BJ Miller:
Yes, exactly. And they’re like they want it. Like their siphoning it for their own jollies, their own – like eww. I’ve had this experience many times when I’ve kind of gotten to a much better place and I’m sort of firmly in myself. Like this happens now. People sometimes want to do something for me and I’ll let them. It’s like I will receive their gift, their offering, not because I need it or even want it, but I can see that they so badly need to do something charitable.

40:54
Dr. Maya Novak:
Yes.

40:55
Dr. BJ Miller:
Like I’m doing them a favor by receiving their gift. It’s this weird perversity, but it’s kind sweet and kind of cute and I find myself doing that from time to time. Like letting someone do me a favor for their sake. And that might sound ridiculous, but it’s just true.

41:10
Dr. Maya Novak:
But I think that I can be also a good exercise for you to be in your receiving mode. It’s like okay…

41:16
Dr. BJ Miller:
Right.

41:16
Dr. Maya Novak:
… I allow myself, actually, to receive.

41:20
Dr. BJ Miller:
Yes.

41:20
Dr. Maya Novak:
It’s not that I’m always just giving because especially men and masculine energy is very giving. So, embracing the feminine part and just receiving is a good exercise – I bet it’s a good exercise for you as well.

41:34
Dr. BJ Miller:
Oh, it’s such a good point. You’re right. And this is the other half of all this is exactly as you say. There is something terrifying – I mean gosh, we could talk for hours - the vulnerability thing and feeling. Like I’ve been talking so far about like these are choices and then it was later on and down the road when I wasn’t in so much need. But there were times – there are still times – where I am really dramatically dependent on others, and I feel very vulnerable. I’ve come to see vulnerability as a strength. I’ve come to really respect what it means to receive care, receive love, because I see how mad many of us at it, especially in medicines. Doctors, nurses, tend to be the worst patients. They think of themselves as the giving – it goes one way. And that’s a recipe for burnout and also it’s a recipe for like a half-ass life. If you get all the way to your death and you haven’t learned how to be loved, you’ve really missed out on something. You’ve missed out on something really beautiful and you’ve missed out on something really, really hard. It is very hard to receive care. It is very hard to be dependent. It is very hard to feel love. I still struggle with that one. I describe it as I have a million defenses. I’ve had to translate people’s affections. And if I’m not careful, I will reject love. I will reject actual love. Pity is shared too, but no, sometimes it’s actual love. And if I’m not careful I will pursue my independence to the point of being an island, and what a shame that would be. And I’m happy to tell you that I so have come to embrace exactly what just said, that for me developmentally, it was becoming - learning and seeing my dependency on others, seeing how I need to receive, and how that is – that has been a growth for me. I think a lot of people would see that as like you’re going backwards. Like you’ve got independence and lost independence and you’re going back to – no, no. We’re always dependent on one another whether we see it or not. That’s the fallacy, this myth of independence. That’s just a joke. It doesn’t really exist.

43:58
Dr. Maya Novak:
We cannot go through life alone. We always need someone.

44:02
Dr. BJ Miller:
Mm.

44:02
Dr. Maya Novak:
We are connected.

44:04
Dr. BJ Miller:
Yes.

44:04
Dr. Maya Novak:
So, it’s just being strong. And I know exactly what you’re talking about because I was raised as a strong independent woman, and then I had a talus fracture with dislocation. The recovery was super long and I had to learn how to lean on others, how to lean my husband, how to okay by receiving help.

44:25
Dr. BJ Miller:
Mhm.

45:26
Dr. Maya Novak:
I think that this is one of the beautiful gifts that we get when we go through this journey of healing.

44:35
Dr. BJ Miller:
You’re right on, I’m with you. Totally agree.

44:39
Dr. Maya Novak:
You mentioned dying, and as a palliative care practitioner what have you learned from your dying patients?

44:50
Dr. BJ Miller:
One is I think we still – we live in a time, and certainly in the US, where odd as it may seem, it’s very instructive that people just prove to us that death actually exists. Because if you just walk down the street and you’ve got billboards telling you about endless youth if use this product, if take this food, whatever. The supposition is that if you make the right choices, if you think positively, if you eat well and don’t smoke, then ostensibly what? You’re going to live forever and you’ll have no wrinkles? This is the illogical conclusions of all the signals that are coming at us, and on television and the way we treat each other, all this stuff. The way we kind of pity aging, and what do with aging in this country? We kind of like try to kind of get those guys out of the way. Life is for folks who are maximally productive and then it’s sort of a slide to retirement and the nursing homes, and basically being removed from the social fabric. It’s so screwed up and so immature. So anyway, what I’m getting at is dying – well all know we die, fine, okay - but that’s so abstract. To be with someone who’s actually approaching that horizon. Who is sitting at the edge of their abyss and just being able to feel that reality which we have so many defenses against, and to have someone cut through that with you just by being with them, that’s a very powerful thing. So, that’s my first answer to your question, is my patients teach me that death is real. But they also teach me that death isn’t the end, in a way. They help me see that life goes on. This body will die. This particular – the particulars of this amalgamation that is my lie or your life, that will die. But the forces at work, they go on. They’re much bigger. We’re part of something much larger all the time. We’re not just our body. So, yes, there’s a fact of death and it’s a really important fact to wrap our heads around and take time seriously, to take our joy seriously, to learn how to receive love while we still have a body that can receive anything. All that is absolutely true. And what you’ll see with patients and with folks who are actually playing their life out in those final moments is they’re sort of dissolving into a much larger fabric. Their energy will continue. But not just the energy, of course, and I mean that in a scientific empirical way – but their emotional residue, the impact that they had on each other. Like I’ve met patients and I’ve known them for a few hours before they died and I still think of them, and that’s almost a kind of an immortality. So, patients teach me about the facts of death and the facts of time, and they also teach me that there’s all sorts of things that we don’t see and don’t understand and that there’s a world beyond time. That there’s a world beyond our bodies too. And those may sound contradictory, but they’re not contradictory. They’re happening simultaneously and so I guess the dying folks help me embrace a much larger, much more profound worldview. And it allows me to both take my life seriously and do with what I can while I have it, and it also allows to me to forgive myself and realize I’m not going to get to everything and that’s okay, and that I’m still part of something way, way bigger that does not die. So I both am emboldened and I get to relax at the same time.

48:39
Dr. Maya Novak:
So, I guess that you are not afraid of dying then?

48:43
Dr. BJ Miller:
I wouldn’t think so, but I always – when I teach student’s on this one – like I don’t think so, I honestly don’t because I’ve come close to it myself. I know what that felt like in so many ways. I could smell it. I could see my body dying in front of me. Those are all pretty profound experiences, that’s true. And I’ve been with hundreds or maybe thousands of people who are at the end of their life, and I’ve seen how not scary it is on some level by the time it’s really happening. So yes, in answer to your question, I think I’m not afraid of it, and I know enough to be like as much I’m talking to you know and all these experiences, I still haven’t died. I’m still talking about something that I haven’t – at least in this life – really experienced. And all of these thoughts are beautiful, sort of, but semi-abstract. They’re coming upon a truth, but they’re a little removed. As I sit here I have some indefinite lifespan in front of me and I can’t pretend otherwise. Sure, I could die today. I could die during our interview. Mm, maybe.

49:45
Dr. Maya Novak:
Please don’t! [chuckles]

49:45
Dr. BJ Miller:
Yeah, I’ll try not to. That would be eww. [chuckles] But my point is like I reserve the right, is what I like to say - and as I said, I teach this – don’t seduce yourself into thinking you’ve got this death thing down.

50:00
Dr. Maya Novak:
Mhm.

50:00
Dr. BJ Miller:
When it’s actually your time, you may freak out. I don’t know. I might be terrified when I’m actually at that abyss. I don’t think I will be, but I might be.

50:11
Dr. Maya Novak:
It’s definitely something to think about, and it’s definitely something that we’re going to experience just before it happens. So, otherwise here is all the theory and everything, but when we are faced with something we will know how we will react, yeah.

50:28
Dr. BJ Miller:
Yeah.

50:29
Dr. Maya Novak:
You’ve said, and I completely agree, I could talk to you like for hours and hours, but we’re going to slowly wrap up.

50:37
Dr. BJ Miller:
Yeah.

50:38
Dr. Maya Novak:
I would like to ask you what is your number advice that you would give someone who is injured right now or who is potentially waiting an amputation, or who is already amputated? What is your number one advice?

50:54
Dr. BJ Miller:
I suppose it is be your body, love your body, but you’re not just your body. It’s like love what you have but don’t confuse it with the whole enchilada. Do you know what I mean? I think a lot of us either have to kind of transcend our body and overcome it and dispense with it or we just completely hyper engage with our body and see nothing beyond it. Try to do both. The opportunity in loss like this, it’s so obvious and so dramatic, is that you get to both have a body and lose it at the same time, and there’s tons of lessons on both sides of that. So open your heart to that. Open your mind to that. Be your body, but don’t be just your body. And I guess right alongside of that, and we’ve said it a number of times already, is your sense of self – however you feel now, you’re not going to feel this way forever. You are being changed by this experience. You can hold on with your fingernails and try hard to not be changed, but I would recommend you roll with the changes. Change is part of the deal whether you lose body parts or not. And I guess that’s a third piece of advice and they’re all kind of related, is sure, let yourself feel sorry for yourself if you need to. You won’t stay there very long. I do think it’s really important that you see – you own our loss, but you also understand it to be a variation on themes. It may seem to separate you from the rest of the world or the people around you. The cues you might get from them might ones of isolation and separation, but that’s made up. That’s not real. You still belong here. You’re just as human as anyone else and you need to own that. You need to demonstrate that. People won’t necessarily give that to you. You have to give that to yourself.

52:46
Dr. Maya Novak:
I love this message. This is so extremely true. I mentioned a couple of times during our conversation, but I would love to ask you once again perhaps a bit more in-depth, what would you say to someone who is losing hope about their healing or about their future?

53:10
Dr. BJ Miller:
Mhm. Well, gosh, there would be so much. To talk to that, of course, I’d want to figure out if they just needed better – I’m putting my doctor hat on – I’d want to know if they had untreated pain, or maybe untreated depression, or if maybe there are misunderstandings. But I don’t think that’s really the heart of the question. I think the heart of question more has to do with – it’s about the message of change and adaptation. And whenever the word hope comes up, and this how I was trained, but I really believe this too is you have to – hope is a powerful force. And even while you’re losing hope for one thing, you can still have hope for another thing. I work with patients who are dying with days or hours or minutes even. So, in some ways, all hope is lost – you would hear this phrase but that’s not true. You don’t have to lose hope. You might be losing hope to live another year or live forever. That hope may be unrealistic, but you can hope for beautiful thought. You can hope for a moment of peace. You can hope for the benefit of others after you’re gone. So don’t give up hope. Let yourself lose it, but you’ll find it elsewhere. You can reframe your hope a zillion different ways, even as you’re losing hope for one thing you can start hope for another. It’s a much more powerful force. It’s not monolithic. It’s not set in stone. It moves around and you can move with it. So, if anyone says to me they’re losing hope, I always say hope for what? And then maybe there’s a coming to terms with the grieving and what is really being lost that’s not possible anymore. And then, we say okay, what do we hope for now? How do we use this powerful tool of hope and apply it somewhere else?

55:03
Dr. Maya Novak:
Beautifully said, BJ. Thank you so much for sharing this. Now to wrap up this interview, one last question that I would love to ask you, is would you change the course of your life – including the accident – if you could? So, if you could go back to perhaps a day before or even way back, would you change anything?

55:34
Dr. BJ Miller:
I’ve thought about this a lot and I honestly think – I mean there are details. I know that my behavior and my actions and my accident caused a lot of pain in my friends, and those are the things I regret and I would love to take back. But then again, if I talked to those same friends they’d tell me how much they learned from those experiences too. And so, actually, maybe I don’t take it back. I think pretty squarely my answer to your question is no, I wouldn’t change. I mean would I like my old hand? It would be great to have two hands. I would love to feel sand on my feet, sure. That sounds wonderful. But I have gained so much from those losses now by leaning into them, by digging into them, by playing with those losses and feeling those losses and working those losses, feeling the love that came with it, and rejecting the pity that came with it. All of that stuff has become such a life-expanding, a capacity expanding, a lesson learning – I feel so – I’d like to think I would learn all those things other ways in my life, but this is how I learned them. This is how my life went and I’m so grateful for that. And if that’s what I had to do to land me in a place where I actually love myself like this and love the world even with all its pain, then amen, I’ll take it. So, in answer to your question, no, I don’t know that I would change any of it.

57:08
Dr. Maya Novak:
Beautifully said. So, for those who would love to learn more about you or your work, is there any possibility of where people can do that?

57:18
Dr. BJ Miller:
Yes, I’m just now starting a little called the Center for Dying and Living. So, we’re just beginning to raise funds for this and build this thing out. It’s going to be this big huge library of information and resources. It’s going to do many things if we have our way, and we’re just beginning it. My friend Shoshana, and I, and that’s thecenterfordyingandliving.org. Right now, we’re just harvesting and delighting in patient stories, caregiver stories, we’re just presenting people’s stories. It’s like we said, I have a good story or a dramatic one, but it’s just a variation on a theme. There are many more stories out there to learn from. So, come visit us on that website. And the one social media thing I’m on at all is Twitter, and that’s @bjmillermd.

58:04
Dr. Maya Novak:
BJ, my heart is full of gratitude. Thank you so much for this amazing conversation and for sharing so many words of wisdom. I truly, truly enjoyed this conversation.

58:16
Dr. BJ Miller:
I did too, and thank you for your questions, and that big smile. It’s a pleasure feeling with you, so thank you.

58:24
Dr. Maya Novak:
Thank you for tuning into today’s episode with Dr. BJ Miller. If you haven’t done it yet, subscribe to the podcast on whatever platform you’re using to tune in, and share this episode with your loved ones – it really can change someone’s life. To access show notes, links, and transcript of today’s talk go to mayanovak.com/podcast. To learn more about The Mindful Injury Recovery Method visit my website mayanovak.com and find my book Heal Beyond Expectations on Amazon. Until next time – keep evolving, blooming, and healing.

Love and gratitude xx
Dr. Maya

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