Bruce Kramer
Forgiving the Body: Life with ALS

From the moment of his diagnosis with ALS, Bruce Kramer began writing — openly, deeply, and spiritually — about his struggle, as he puts it, to live while dying. He died on March 23, 2015, while we were in production on this show. His words hold abiding joy and beauty, and reveal an unexpected view opened by this disease.

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was the creator of “The Dis Ease Diary” a blog about his life with ALS and We Know How This Ends: Living While Dying. He was the Dean of the College of Education, Leadership and Counseling at the University of St. Thomas, where he served on the faculty for over 19 years. He was a passionate music lover and was a choir conductor for most of his adult life.

Transcript

March 26, 2015

KRISTA TIPPETT, HOST: We Know How This Ends. That’s the title of Bruce Kramer’s memoir about his life with ALS. A life-long educator and musician, he was diagnosed with the disease five years ago and began hospice last fall. He died while we were producing this conversation for air. From the moment of his diagnosis Bruce Kramer began to write — openly, deeply, and spiritually — about his struggle to live while dying. His words hold abiding joy and beauty, and reveal an unexpected view inside this disease.

BRUCE KRAMER: What I found as I told people about ALS was they began to tell me about ALS. They began to tell me about the ALS they carried. They began to tell me about the struggles that they were working through, too. And I think that they told me not because it was a way of cleansing or a way of — but it was a way of saying we carry these things. And I want you to know I’m carrying something, just like you are. And what I began to realize is that these things that we carry, these struggles, emotional, physical, spiritual, that these struggles — they weren’t transparent, but that ALS revealed them.

MS. TIPPETT: I’m Krista Tippett, and this is On Being.

[music: “Seven League Boots” by Zoe Keating]

MS. TIPPETT: Bruce Kramer was the Dean of the College of Education, Leadership and Counseling at the University of St. Thomas in St. Paul, where he served on the faculty for over 19 years. He was also a passionate music lover and was a choir conductor for most of his adult life. When I met him, he was confined to a wheelchair, breathing with the help of a mask connected to a BiPap machine. I sat with him and his wife, Ev, at their home in suburban Minneapolis.

MS. TIPPETT: In 2010, you were 54, the age I am now. And I — you write you’d just completed your second year as the Dean of the College of Education, Leadership and Counseling. Your kids were grown and settled. You wrote, “We had two cats. I was a bike commuter. Ev and I spent a month in Indonesia. We drank a lot of wine, and we ate a lot of fish. 2010 was a great year.” And then you got this diagnosis, essentially, as you described it, which helped me understand this. Your motor neurons were dying. And you wrote that after the diagnosis, you realized you had unknowingly prepared for this moment your whole life. So, start by just talking about what you mean when you say that.

MR. KRAMER: This is a hard one for me to talk about. I come from an addictive family. That particular experience means that you become quite attuned to chaos. You don’t know which mom you’re going to wake up to that day. And so the skills that I developed, especially as the oldest son, were about how to quiet things down, how to bring some kind of order.

The interesting part of all of this is that my mother, my grandfather were musicians. And I knew that when my mother sat down at the piano, things would be orderly. They’d be quiet. We would know that things were going to be OK. So I became a musician. That’s where I started. And as a musician, especially if you’re looking at being a conductor, your whole being is about making order out of chaos. You’ve got to get everybody on the same page.

MS. TIPPETT: I know that’s true, but I don’t think we often think of music in the first instance as…

MR. KRAMER: No, we don’t think of it that way, do we? We usually…

MS. TIPPETT: …as ordered and — yeah.

MR. KRAMER: Right. That musicality — it introduces aesthetics into your life. And I began to feel that life really, in order for it to mean something, had to be beautiful, that there had to be a sense of beauty around it. That particular assumption has been very helpful with ALS.

MS. TIPPETT: Mm.

MR. KRAMER: ALS comes in, it treats each one of us very differently. I started with a drooping toe. But I have friends who started with ALS in their faces. They die more quickly. It’s harder to eat. And ultimately, it gets the body, the whole body.

MS. TIPPETT: Right.

MR. KRAMER: It imposes an order onto the chaos. And the fact that I can perceive that order has been very helpful in negotiating this life.

MS. TIPPETT: Mm. Is that what you meant when you said a minute ago that it’s very elegant, what happens?

MR. KRAMER: Yes.

MS. TIPPETT: Mm-hmm.

MR. KRAMER: It is.

MS. TIPPETT: It knows what it’s doing.

MR. KRAMER: I don’t think people think of disease as elegant.

MS. TIPPETT: Mm-hmm.

MR. KRAMER: But the fact is — and I wrote a blog where I quoted from Job. And what I found in that, as I was going through the Job story, is really in a lot of ways, that story is about the fact that things will be what they will be. And you can have faith in that. You can have a strong faith in the fact that we will be born, we will live, and we will die. And ALS, with the way that it goes about what it does, it’s inexorable, it doesn’t stop, there is no cure.

MS. TIPPETT: Mm-hmm.

MR. KRAMER: The healing that you are able to gain with ALS comes mostly because you’ve embraced the fact that it is what it is.

MS. TIPPETT: Right.

MR. KRAMER: So that sense of chaos and then that sense of order was very helpful to me.

MS. TIPPETT: I mean, one of the things I think you were — you’ve touched on a bit already is you were confronted with kind of archetypal American ways of dealing with crisis and problems. You’ve talked about this irrational belief that we are in control of how we live and die. The — an able-bodied fix and cure mentality. And I think you put that in a really — I mean, these are things I’ve thought about before — you put that in a really interesting perspective in terms of that this is part of our fight and flight mechanism. I mean, Americans may have brought this to a high art form, our sense of control, and fixing things, but that essentially — you know, say there’s something very seductive to us, just physiologically, just as creatures, about adopting the fighting lexicon. But that ALS does not allow that.

MR. KRAMER: Cancer won’t either.

MS. TIPPETT: Right.

MR. KRAMER: You know, I — in fact, I don’t know a disease, I don’t know of any physical condition where fighting it is really going to work. And we use that terminology.

MS. TIPPETT: Yeah.

MR. KRAMER: All the time. You read obituaries. “She fought the good fight.”

MS. TIPPETT: Yeah.

MR. KRAMER: He really — and…

MS. TIPPETT: We use the language of battle.

MR. KRAMER: We do. And it’s militaristic.

MS. TIPPETT: Mm-hmm.

MR. KRAMER: And what struck me — and I had some help with this. I had this very funky healer call me, a friend of a friend. And it was late at night here. She was living in Hawaii. And she called, and I said, “Well, let me tell you about what’s going on.” And she said, “Oh, no, I don’t need you to. I just need you to be quiet right now.” This is a very weird thing to do on the telephone, right? [laughs] And so I’m very quiet. Finally, she says, “You are so angry. You have to forgive your body or this is not going to go well.”

MS. TIPPETT: Mm. Yeah. I mean, there was a place where you write that as an educator, you had learned the difference — of course I love this — between opening to possibilities through questions and closing creativity with answers. And that then as ALS became part of your experience, the question you were — you started to be able to ask to turn that was, “How shall we grow into the demands of what is beyond us?” Which is a different question from, “How shall we fight this?”

MR. KRAMER: Exactly. I think we’re done here. You just captured it. [laughs]

MS. TIPPETT: [laughs]

MR. KRAMER: Well, and I — yeah. I’m sorry. But I’ve been asked often, “What do you think your legacy will be?” And my answer to that is that legacy is an act of ego. We think we’re going to leave something of ourselves. But education is an act of faith. It’s faith in the fact that human beings have the capacity to grow and that as humans, we can become better. We can become more compassionate. We can become more understanding. And no matter what it is that afflicts us, that affliction can become a part of us that makes us better people.

I realize on one level, this sounds incredibly idealistic. But the fact is, is that as humans, we’re given ideals. We’re able to project that. And it makes us better. So I feel that in the end, by focusing in on what does it mean to be a teacher, what does it mean to be an educator, what does it mean to have faith? Those things suddenly — you’re not angry with ALS anymore. You may be angry at the circumstances. There are — I will admit to you, there are days where I just melt down. I’ve had it. I don’t like having everything done for me.

MR. KRAMER: But the fact is, is that most of the time, I perceive great beauty and great joy. And a lot of that comes from having ALS.

[music: “Wait and Then” by Gustavo Santaolalla]

MS. TIPPETT: I’m Krista Tippett, and this is On Being. Today with educator and writer, Bruce Kramer, who died while we were in production on this show. In the blog he kept throughout his experience with ALS, he wrote this:

“We see the guy on crutches, on a cane, the woman in a wheelchair. But ‘The Look’ goes right through them. We are afraid to acknowledge their disabled regalia, how they struggle, walk without balance, or don’t have a free hand when one is needed. In my old normal, I gave ‘The Look’ as often as I didn’t, secure and confident in my able-bodiedness. I’d look right through disability, and I wouldn’t have to face its possibility in the person that I’d looked through.”

[music: “Wait and Then” by Gustavo Santaolalla]

MS. TIPPETT: When you say that you didn’t see the suffering — and you know, Bruce, you write about this. In one place you write in your book about “The Look.” Which you started getting, and you realized that as we do all the time, and you’ve probably done it too. And it — again, that’s instinctive. I mean, I don’t know. Do we not see the suffering? Or can we not bear to see the suffering? Can you say just a little bit about what the — about “The Look?” And about how you saw that?

MR. KRAMER: Yeah. I was going to say that…

MS. TIPPETT: Yeah.

MR. KRAMER: …we should probably explain that. And I think first of all, we don’t recognize how privileged we are as able-bodied people.

MS. TIPPETT: Right.

MR. KRAMER: And particularly, in our culture, we tend to see disability as a punishment, as a — that there’s a reason for that. And the reason I’m not disabled is because I didn’t do whatever it was…

MS. TIPPETT: Really? Do you think that that’s in us even if it’s not consciously articulated?

MR. KRAMER: I do. I really do. I think we’re — I think — if you look at the way — for example, in 2011, we went back to Thailand. It was kind of…

MS. TIPPETT: This was after your diagnosis.

MR. KRAMER: After my diagnosis.

MS. TIPPETT: Yeah.

MR. KRAMER: It was kind of our farewell tour. We knew we weren’t going to be able to travel for much longer. So we went back to Thailand. And I was on a cane at the time. I should have been on a walker. I probably should have been in a wheelchair. But I was on a cane. And Thailand is not set up for disability at all. And yet, we would get out of a cab, and they would see that I was struggling, struggling to walk. And invariably, two guards, or two men, or two people would come up, and if there were a lot of stairs to take, they’d grab me under each shoulder and take me up the stairs. I just can’t imagine that happening here.

MS. TIPPETT: Mm-hmm.

MR. KRAMER: I can’t imagine that people are actually looking for a way to honor the fact that you are still there, you’re still present. And what I found with “The Look” was that I suddenly had to face in myself that I had ignored disability. And it was basically a statement of “there but for the grace of God go I.”

MS. TIPPETT: Right.

MR. KRAMER: And I had ignored it to the point where I was defining people by their disabilities.

MS. TIPPETT: Yeah.

MR. KRAMER: And so “The Look” was looking through them, looking around them. But not actually looking at them.

MS. TIPPETT: Right. Somewhere you said “The Look” is neither fight nor flight, but…

MR. KRAMER: Right.

MS. TIPPETT: …essentially choosing not to be present…

MR. KRAMER: That’s right.

MS. TIPPETT: …denying the present.

MR. KRAMER: It’s just a way of saying, “I don’t have to be conscious of this.” And it’s a huge privilege to be able to say that.

MS. TIPPETT: Right.

MR. KRAMER: Now, with no ability to move my arms or legs, with the fact that all of my breathing muscles are gone, so I have to wear this machine just to live, I recognize that look in other people.

MS. TIPPETT: Mm-hmm.

MR. KRAMER: You can see them just — it goes through its own stages. And I will admit sometimes it’s hard not to not to play with that a little bit.

MS. TIPPETT: [laughs] Really?

MR. KRAMER: Well, I have been known to say to people, “Don’t worry I’m not going to die right now because we’re together.” And it’s kind of like, “Gosh, you actually perceived that’s what I was thinking — I hope he doesn’t die.” [laughs]

MS. TIPPETT: Well, OK, so let me ask you this really practical question. Let’s say “The Look” is something that comes naturally. But someone hears this, and next time it happens to them, they find themselves instinctively giving “The Look” or looking away, really. What would you like them to do instead?

MR. KRAMER: Well, I think first of all, you acknowledge. Tell me why you’re here. Tell me what your — tell me your story.

MS. TIPPETT: Mm-hmm.

MR. KRAMER: And that story becomes as important as the story that you carry with your able legs and your ability to open doors. I’m hoping that just in these few moments together, you see that there’s really nothing wrong with the way I’m thinking. And yet, people will bend down to me and they’ll speak in a really loud voice because, you know, I probably can’t understand them.

MS. TIPPETT: Right, right.

MR. KRAMER: Because I’m in a wheelchair.

MS. TIPPETT: Right.

MR. KRAMER: We don’t have to do that.

MS. TIPPETT: Mm-hmm.

MR. KRAMER: And I think part of it is our own discomfort. Part of it is our own fear. And the fear part, we really don’t like to acknowledge. So if I were asking you to do something practical, I would say treat me the way you would treat anyone else. But also recognize I’m going to need you to open the door for me. I may need you to push my wheelchair. That’s just part of the way things are.

[music: “Portrait of Arthur Rimbaud” by Giancarlo Vulcano]

MS. TIPPETT: So here’s something you wrote: “As I began to comprehend the meaning of dis ease, the meaning of ALS, I could see the physical breakdown looming on my horizon, but dis ease revealed so much more. Hard to pin down, hard to define, dis ease emerged as an ever-evolving framework that went where I went, did what I did, was as I was, always in the room like oxygen or fire. And not just for me, but for everyone.” What is it?

MR. KRAMER: When I was first diagnosed, I very deliberately decided how I was going to tell people about ALS. I started with a very small circle. And I expanded that circle in a very deliberate way until, finally, I sent a letter to my faculty and explained to them what was going on. And of course, I mean, you can imagine how that would affect you if you received a letter like that. Even the people that thought I was a jerk as a dean…

MS. TIPPETT: [laughs] Right.

MR. KRAMER: …it affected them. What I found, as I told people about ALS, was they began to tell me about ALS.

MS. TIPPETT: Mm.

MR. KRAMER: They began to tell me about the ALS they carried. They began to tell me about the struggles that they were working through, too. And I think that they told me not because it was a way of cleansing or a way of — but it was a way of saying we carry these things. And I want you to know I’m carrying something, just like you are. And what I began to realize is that these things that we carry, these struggles, emotional, physical, spiritual, that these struggles — they weren’t transparent. But that ALS revealed them.

In those moments together, if I could teach myself to be quiet, to listen, what I found was that these struggles were informative. They actually helped define the pathways that each of us were taking. And we had absolutely no expectation that these things were going to be cured. A person whose marriage was blowing up, a friend — they didn’t expect that their marriage would suddenly come back together. They realized that this experience was going to be with them for the rest of their lives, no matter what. I knew that I would not be cured of ALS.

MS. TIPPETT: Mm-hmm.

MR. KRAMER: Although, there are a lot of people out there who will tell you they can do it. But I knew I wasn’t going to be cured. It would be with me for as long as I lived, as long as this body continued to live. It became almost an acknowledgement that in the room, in this room right now, as we are sitting here, each one of us holds almost a personage, sitting next to us, abiding in the gut, living in our breath. And that personage defines who we are in so many ways. And what I kept hearing was that you can’t run away from this. If you embrace it, it will teach you. It will open you. And dis ease became my name for that, for that phenomenon.

MS. TIPPETT: Mm.

MR. KRAMER: And then there’s disease. And I think I write someplace, disease is a lie. The medical model is a lie. We will never be cured. If you have a cavity in your tooth, they’ll fill it, but you still have that cavity.

MS. TIPPETT: Right.

MR. KRAMER: If you have cancer…

MS. TIPPETT: Right.

MR. KRAMER: …that cancer may go away for a while, but you will always carry the personage of cancer with you. And so, if you buy into the disease story, you will only be frustrated. You will only be disappointed. And ultimately, I think you will feel ill-used by life itself. But if you understand that there is this phenomenon where cancer, where relationships that go awry, where ALS, where all of these things become a way to see the world, open up the world to you, then you are given a great gift. And so when Ev tells you she wouldn’t go back…

MS. TIPPETT: Mm.

MR. KRAMER: …when I tell you I wouldn’t go back, it’s because we actually passed through the fire and the ice of disease and embraced the fact that this is the greatest teacher we will ever know.

[music: “Fly” by Ludovico Einaudi]

MS. TIPPETT: You can listen again and share this conversation with Bruce Kramer through our website, onbeing.org. I’m Krista Tippett. On Being continues in a moment.

[music: “Fly” by Ludovico Einaudi]

MS. TIPPETT: I’m Krista Tippett, and this is On Being. Today with educator and writer Bruce Kramer. In 2010, he was diagnosed with ALS, also known as Lou Gehrig’s Disease. He died on March 23, 2015, while we were producing this conversation. Bruce Kramer created the “The Dis Ease Diary,” a blog about his life with ALS, and that became the basis for a newly released book, We Know How This Ends: Living While Dying.

MS. TIPPETT: I want to talk about yoga.

MR. KRAMER: [laughs] OK.

MS. TIPPETT: Which you have started to do, which I love, also, and have found very transformative in my circumstances. You started doing adaptive yoga with Matthew Sanford after your diagnosis in these last couple of years?

MR. KRAMER: Yes.

MS. TIPPETT: Yeah, talk about what that’s meant to you.

MR. KRAMER: Matt and I have become quite good friends. And I think part of it is because we don’t have to explain things to each other. We’re both profoundly…

MS. TIPPETT: And he’s quadriplegic from…

MR. KRAMER: That’s right.

MS. TIPPETT: …from a car accident…

MR. KRAMER: From a car accident.

MS. TIPPETT: …when he was 13. Yes.

MR. KRAMER: He’s — we both have profound disabilities.

MS. TIPPETT: Yeah, and he’s also a very renowned yoga teacher.

MR. KRAMER: Yes, he is.

MS. TIPPETT: For both adaptive yoga and able-bodied people.

MR. KRAMER: He’s — actually Ev likes to study with him in his regular classes.

MS. TIPPETT: Yeah.

MR. KRAMER: Because he’s such a good yoga teacher.

MS. TIPPETT: Mm-hmm.

MR. KRAMER: Just plain old yoga. But I think I came to yoga because Ev took me there. She said, “I think it’ll make you feel better physically.” So I went. And the first yoga class that I was in, I suddenly realized it was music.

MS. TIPPETT: That it was music.

MR. KRAMER: It was music all over.

MS. TIPPETT: Huh.

MR. KRAMER: And I realized that there was a depth to this mind/body relationship that they were trying to teach us that is very similar to the mind/body relationship that one has, especially as a singer. So, for example, when I would work with the choir, I would ask them to ground their feet, to be very present. And as you breathe, breathe into your toes, and as you exhale into this tone, let this tone go out the top of your head. Does this sound like yoga to you?

MS. TIPPETT: I never thought about that. Yes.

MR. KRAMER: Yeah, well, so there I am, and I’m thinking, “Oh, my God, I’m practicing music again.”

MS. TIPPETT: Mm-hmm.

MR. KRAMER: I’m a musician again.

MS. TIPPETT: Mm.

MR. KRAMER: Because by that time, I’d lost the ability, the physical ability to conduct.

MS. TIPPETT: Mm.

MR. KRAMER: But then there’s more to it than that. There’s the concept of peeling an onion. I think — I find that more useful than talking about koshas. But peeling an onion — the idea that as you are physically engaging and mindfully engaging that physicality, as you are recognizing the energy that flows through you, out of you, into others, and others’ energy flowing into you, that there’s more to it than coming to a moment of bliss. On Wednesday, I had a yoga class. And my teachers — it now takes at least three people to help me to do anything resembling an asana.

MS. TIPPETT: Mm-hmm.

MR. KRAMER: But, my teachers — we were working on this one pose, and one of my teachers said, “Now just let your shoulders move forward toward me.” I burst into tears. And this happens to me often with yoga. But this time, it was so profound.

MS. TIPPETT: Because you couldn’t move your shoulders forward, or no?

MR. KRAMER: No. Because I was overwhelmed with this center that I could perceive that I had delved deep into something that I didn’t even know was there. That was equal parts gratitude and sadness.

MS. TIPPETT: Mm.

MR. KRAMER: Those two things just welled up, and there I was, crying. And as I thought about that, and I thought about the fact that this had come through this physical, mindful, energetic activity. I realized that once again, it was that call.

MS. TIPPETT: Mm.

MR. KRAMER: That sense of being present, being here. And I’ll be here until I’m not. It was that sense of connection that makes us so human. And so, yes, the physical activity is really good for me.

MS. TIPPETT: Mm-hmm.

MR. KRAMER: But I think you can imagine how easy it would be to feel cut off from humanity with a disease like ALS. And instead, I am humanity.

MS. TIPPETT: I also think that I’ve had conversations with Matthew as well, and including on the radio show. The thing about yoga, even the physical postures are about inner calm and, I mean, essentially the early — originally those physical postures were about preparing for meditation, right? Like stilling your body so that you could have some kind of connection with your inner life and your inner work. And I’ve felt with Matthew that because nerve endings don’t get in the way of that — I mean that he has a more direct connection to that impulse. And I mean, I’m hearing — I feel that is also your experience as well.

MR. KRAMER: He has said that to me.

MS. TIPPETT: Mm-hmm.

MR. KRAMER: That — one day, he came over. This was kind of fun because he came over after having a cellist in the yoga class that he was teaching. And this cellist started playing the class for them. So he was perceiving what was going on in the class.

MS. TIPPETT: Really? So the music was following…

MR. KRAMER: So he was improvising, yes.

MS. TIPPETT: Mm-hmm.

MR. KRAMER: Following the rhythm.

MS. TIPPETT: Mm-hmm.

MR. KRAMER: And the flow of the class — of the practice is probably a better word. And Matt was just really jazzed by this, really excited about it.

MS. TIPPETT: Yeah.

MR. KRAMER: And the more he talked, the more I realized that he didn’t really have that musical sense of why this was touching him. So I put on a — I found a YouTube video of Jacqueline du Pré, great cellist who had multiple sclerosis…

MS. TIPPETT: Mm-hmm.

MR. KRAMER: …and which just ended her career. But, oh, she was so wonderful when she played. And, we started watching her. And Matt talks a lot about the spine.

MS. TIPPETT: The spine, yes.

MR. KRAMER: The spine.

MS. TIPPETT: Yeah.

MR. KRAMER: And as we watched the cello, you see sitting out in front of Jacqueline du Pré the spine.

MS. TIPPETT: Mm.

MR. KRAMER: And the body. And you see the sound coming up out of the body. And suddenly you realize that there is this connection that you’re just not aware of…

MS. TIPPETT: Mm-hmm.

MR. KRAMER: …unless you’re practicing.

MS. TIPPETT: Right.

MR. KRAMER: That connection, to me, is almost superhuman. And in many ways, it has allowed me, especially in the last two years, as the physical challenges of ALS have become greater and greater, it has allowed me to remain engaged when I might have pulled back.

MS. TIPPETT: Mm.

MR. KRAMER: So yoga has been a great…

MS. TIPPETT: Which could seem so counter-intuitive.

MR. KRAMER: Doesn’t it, though?

MS. TIPPETT: Yes.

[music: “Adagio” from “Cello Concerto in E Minor, Op.85” by Edward Elgar, performed by Jacqueline du Pré and the London Symphony Orchestra]

MS. TIPPETT: I’m Krista Tippett, and this is On Being. Today with Bruce Kramer, a lifelong educator and musician. His memoir about the last five years of his life with ALS is called We Know How This Ends. I spoke with him at his home alongside his wife, Ev. He died this past week at the age of 59.

MS. TIPPETT: I want to talk about a love, caregiving and love. And I think love is probably as hard to do justice to in words as religion is, you know? If you try to talk about something like this head on, you just don’t get there. And it sounds trite, and it’s not. But I think some of the way you’ve spoken about your experience with ALS and written about it, you’re very attentive to the burden of this, the hardness of it, the hardness of it. And Ev is sitting right here next to you.

There’s this line in your book: “I have seen the grimness that creeps into the face of the caregiver.” That’s a very stark sentence. I don’t know, I just kind of want to throw that out there about what — love in its fullness — what you’ve learned. There’s a place where you say the opposite of love is not hate, it is fear. And I wonder if that also applies to just the kind of intimate love of a marriage in this kind of passage through life. And I’m interested, Ev, if you…

MR. KRAMER: Do you want to go ahead with that one?

EV EMERSON: Well, just start and I’ll chime in.

MR. KRAMER: OK. Ev and I have been lovers for 33 years in every sense of the word. And I was so afraid after I was diagnosed of what this would do to that love. I couldn’t imagine an existence that — and this is one of the great gifts of my life is that I would get up in the morning and every day I realized I was more in love with my spouse than I was the day before. I — this is a great gift. There are very few people I know who can say that. But I was so afraid that ALS would take that away. And then I began to pay attention to the — just the physical and emotional toll that it takes on anyone that gives care.

MR. KRAMER: And so we — I think we’ve tried — I — we talk about it. We talk about it a lot. It is really hard. It’s hard today. It will be hard tonight. It will get harder tomorrow. But what we’ve tried to do is to at least pay attention to that. And what I have had to understand, and again, this goes back to dis ease, is that ALS isn’t about me. It’s all — it’s splashed all over my family, all over my friends, all over my colleagues. It hurts them just as it hurts me. I actually probably am doing better than my caregivers are because my path is set. They’re never quite sure what they’re going to face. So I have come to this point where I try to be hypersensitive to it. And yet, it’s still very difficult.

MS. TIPPETT: Mm.

MR. KRAMER: And in the end, every morning I wake up and I’m more in love with her than I was the night before.

MS. EMERSON: Even when I crab at you?

MR. KRAMER: Yeah, oh yeah.

MS. TIPPETT: Yeah, well, do you want to add anything to that?

MS. EMERSON: A very wise person told me early on that Bruce is going to get all the care he needs, but you won’t.

MS. TIPPETT: Right.

MS. EMERSON: People will forget about you.

MS. TIPPETT: Right.

MS. EMERSON: So you need to take care of yourself. And so we’ve been in training. I’ve — I never did yoga before all of this, and that was a recommendation of my counselor. And meditation is something I started to study last year. And any little thing that will help me keep my balance is going to be ultimately good for you, too. You know when I’ve had a good day. [laughs]

MR. KRAMER: I do. I do.

MS. EMERSON: And when I’ve had a day where I haven’t had a chance to exercise or do yoga or meditate, you also know.

MS. TIPPETT: Yeah.

MR. KRAMER: Or play the piano.

MS. EMERSON: Or play the piano. The things that feed my soul have to still happen, or I’m no good for myself or for Bruce.

MR. KRAMER: And I see my own responsibility in that, Ev, encouraging her to do so.

MS. TIPPETT: Right. Right. That’s very clear, that you…

MR. KRAMER: That I…

MS. TIPPETT: …you pay attention.

MR. KRAMER: …I have to be — just as Ev has my back, I have to have her back.

MS. TIPPETT: Yeah.

MR. KRAMER: And again, when you think about that mutual dependency, in many ways, that defines some of the most beautiful humanity that we’re capable of. And yes, we were mutually dependent before, but now, with this other in the room with us, that mutual dependency has to continue to grow, day-to-day, because things shift and things change pretty quickly. But in the long run, it’s really paid off, I think, for both of us.

MS. TIPPETT: I love the way you write and talk about all the life-giving things that you’ve done, and that you’re just experiencing from skydiving to your new granddaughter. Here’s something you wrote: “Before ALS, I could see my plans opening into limitless vistas. Now I am cured of planning.” You also wrote this: “In my fourth summer of ALS,” which would be now, right? Or this last summer? “I am healed by music and vulnerability.” And I love that, and I’d like you to just talk a little bit more about that. And also what it implies about the meaning of the word “healed.”

MR. KRAMER: Healing comes in many guises. We’re healed by just the touch of a friend. We’re healed by the hug of a child. And healing does not imply that your life is suddenly going to lose all of the struggle, all of the challenge. What it does instead is it strengthens us for what is next. But to be open to healing means to be vulnerable. And I think if you look at me, you know I’m what they would call a vulnerable adult. The cat doesn’t even listen to me here. [laughs] They’re — I have no real sense of control anymore.

And so, again, the choice could be to resent this. To be frustrated by it. And there are times when I am. I promise. But I think the greater choice is the fact that once you embrace your vulnerability, you are open to such beauty. And in the end, isn’t this one of the things that truly makes us human? The ability to make, to perceive, to live in beauty.

For me, I’m a musician. I’ll always have the soul of a musician. And because of that, music heals me. If I am finding myself anxious, or find myself in a space where I know I’d better get a hold of this, I find that listening to music is one of my best strategies. And so music is a healing activity. But if you talk to Matthew Sanford, for him, visual art just opens up that same sense of healing.

MS. TIPPETT: Mm.

MR. KRAMER: And I know so many people who are artists in their own right, and they really are not themselves until they are in that artistic mode, either listening, perceiving, or actually making the art. I feel like I’m just lucky that I had that gift because in many ways, it has helped me to understand how to do this and do it in the most humane way possible. And that is healing.

MS. TIPPETT: Is there anything else that we haven’t talked about that you’d want to add? That feels really important, really essential to this?

MR. KRAMER: Earlier, I said to you that in this practice of yoga, I had delved down into a space where I perceived this great pool of gratitude and sadness. And don’t mix sadness up with depression or despair.

MS. TIPPETT: Mm-hmm.

MR. KRAMER: All sadness is is a way of sensitizing you to what really matters, what’s really meaningful. And death does that. I see my death. It looms in front of me sooner than I would like, but because it’s there, because we live with that, I am so grateful for just this moment, for this time together. And that is a great gift. And by embracing that. I realize there’s nothing to be afraid of. And that’s what I would add.

MS. TIPPETT: Thank you so much.

MR. KRAMER: Thank you. It’s been a real privilege to have this time with you.

MS. TIPPETT: Well, the privilege is mine.

[music: “In a Station of the Metro [Instrumental]” by Wes Swing]

MS. TIPPETT: Bruce Kramer died at home, surrounded by his wife, Ev, and other family and friends, on March 23, 2015. He created the “The Dis Ease Diary,” a blog about his life with ALS. His book, written together with Cathy Wurzer, is We Know How This Ends: Living While Dying. Bruce Kramer was the Dean of the College of Education, Leadership and Counseling at the University of St. Thomas in St. Paul, Minnesota until 2012.

After our interview ended, but before we turned off the microphones, we asked Bruce Kramer about music he loves and captured this wonderful conversational coda.

CHRIS HEAGLE: I want to ask one more music question. Was there a piece that you — was your favorite to conduct? To be in front of a choir?

MS. EMERSON: Oh…

MR. HEAGLE: That’s probably hard to narrow it down.

MS. EMERSON: I bet it was “Messiah.”

MR. KRAMER: You know, “Messiah…”

MS. EMERSON: You loved “Messiah.”

MR. KRAMER: I probably conducted 40 performances of “Messiah” in my lifetime. And I always liked doing it because when I would meet with a choir, they thought they knew how it went. And here we are, and I’m trying to get them up on their toes to dance. And once you get them dancing, what an incredible experience. So you take something, life, that is known, and then you dance it. And you make it something that’s far beyond. And I would say to the choir, “Hear that spot right there? Hear what you did right there? That was the face of God.”

[music: “Lift up your heads, O ye gates” from “Messiah” by George Frideric Handel, performed by Orchestre du Concert d’Astrée and Emmanuelle Haïm]

MS. TIPPETT: You can listen again, watch, or share this episode at onbeing.org. You can also stream it on your phone through our iPhone and Android apps or on our new tablet app.

[music: “Lift up your heads, O ye gates” from “Messiah” by George Frideric Handel, performed by Orchestre du Concert d’Astrée and Emmanuelle Haïm]

MS. TIPPETT: On Being is Trent Gilliss, Chris Heagle, Lily Percy, Mariah Helgeson, Nicki Oster, Michelle Keeley, and Selena Carlson.

Special thanks this week to Ev Emerson.

Our major funding partners are: the Ford Foundation, working with visionaries on the frontlines of social change worldwide at Fordfoundation.org.

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About the Image

Bruce Kramer at his home in Hopkins, Minnesota on February 6, 2014.

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  • Linient Geroge Maxwell

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