I had no idea how to greet Bruce Kramer. My instinct was to offer my hand, but his hands were tucked under a blanket and a cat. Also, he has ALS. I wasn’t sure he could move his hands. So I just waved a hello and sat on the couch in front of him. I’m here in his Hopkins condo to ask him what it’s like to die. I know this is appropriate because he’s been describing the process on his “Dis Ease Diary” blog, in segments with Cathy Wurzer on Minnesota Public Radio (MPR), and now in a book co-authored with Wurzer called We Know How This Ends: Living While Dying. He wasn’t uncomfortable. I was uncomfortable. But he and Wurzer help ease me into the conversation. It’s what they do. If you’ve listened to MPR’s “Morning Edition” at all in the past four years, you’ve heard their conversations. The segments show up every now and then in between news and weather, and often last up to 10 minutes, which is a lifetime on drive-time radio. They’re remarkable. They get into all the details of dying, right on the radio: the loss of functionality, the physical pain, the rupture of identity, the heartbreak. MPR has aired 35 of their conversations and more are coming, right up to the end, which may arrive soon since Kramer is now in hospice.
The book isn’t what you think. It doesn’t follow an interviewer-subject format, like the MPR segments. It employs a dual narrative. Readers learn that while Wurzer was interviewing Kramer about dying, her own father was dying. After getting off work she would often barrel down 35W to Two Harbors to tend to him then come back the same day, a “sling shot” as she calls it, to be on the radio by 4 the next morning. At the same time her marriage was breaking up. So while she was documenting the story of Kramer’s health deterioration, she was absorbing intense loss of her own. She writes with a touching wistfulness about how in retrospect she wishes she would have taken time to slow down and take better care of herself. Kramer has been showing her how.
I wasn’t exactly sure how to talk to them about death. What I did know is that I had been stirred by their book. It’s not filled with disposable sky-is-blue inspiration. That’s not Kramer; that’s not Wurzer. Their book challenges readers on the assumptions we all make in our lives. Their requests are earnest and valuable. Can you be more vulnerable? Can you break free of safe social patterns and learn to openly express love? Can you in fact learn to love your own death? And can you start now?
As I read their book I kept thinking of a line from the poet Edwin Markham: “Defeat may serve as well as victory to shake the soul and let the glory out.” There’s a lot of glory that came out in this book.
I wasn’t sure how to do this. But here’s how it went.
TP: Bruce, you were diagnosed with ALS in December 2010 and started a blog pretty much right away. Why was writing about the experience important to you?
Kramer: I started the blog for practical reasons. I kept getting people that I knew saying, How are you? I could have spent my whole day replying to 50 different people. So I thought, Well, I’ll start a blog. The blog took on a life of its own. After I wrote the first post, which was kind of glib — I tried to make it humorous — I realized that I was having a lot of introspection about my life and my mental health. The blog became a way of exploring that.
TP: And about a year later Cathy approached you to share your story for a series on MPR?
Kramer: She did. We had met previously and we both thought it might do some good.
TP: Bruce, I was fascinated with the section in your book when you wondered if your health deteriorated after you were given the diagnosis. You were curious if the naming of the condition had set you down a self-defeating path.
Kramer: At first after I wrote that I thought it might have been a ridiculous thing to say. But then I started looking at the evidence. And the evidence was in November 2010 I was walking. By December I was walking, but I was given a name for the condition. And by the end of December I was on a cane and moving toward a walker. And I kept thinking to myself, You know, I think I might have held this off, I think I might have kept pushing back on it if I hadn’t had a name for it. I remember talking with [Bruce’s wife] Ev about it and asking her, Do you think that had we not discovered this was ALS that I would not have progressed so quickly? And her answer was, You’re stupid for asking that. [Laughs.] Of course you would have progressed that quickly. But there is something there with the interplay between psychology of the mind and the body.
TP: Cathy, was it a similar experience with your father and his diagnosis?
Wurzer: Yes, once it was named it was really interesting to watch because his identity then became that of a person with dementia. He wasn’t Fritz Wurzer. He was seen by doctors and friends as being a guy with dementia, not dad, not Fritz. And then he started to act that way, although maybe that would have happened anyway.
TP: Bruce, you’ve discovered yoga since the diagnosis and it’s had a profound impact on your life.
Kramer: It has. I do yoga with Matthew Sanford, and it’s been wonderful. Often in our culture, yoga is done like an exercise regimen or it’s done as an exercise in mindfulness without really accounting for the body. In yoga we are asked to accept the body that we bring. We are asked in the end of our practice to thank that body for what it’s been able to do, not to dwell on what you aren’t able to do. With a progressive disease, having that kind of attitude has been extremely helpful. It has reintroduced the physical into the whole process for me. It has allowed me to accept what is happening and to acknowledge the fact that all of us are going to face death, and most of us are going to face chronic illness, which we treat as anomalous. It’s not anomalous at all. It’s normal. I think there are ways of reintroducing the mind-body connection in a way that is very healthy even though I’m paralyzed.
TP: Cathy, in the book your father struck me as a proud, stoic figure. Was it hard for him to talk about his illness?
Wurzer: He was pretty stoic. My father had pretty much accepted his fate, and what we tried to do in the family was build on his remaining strengths and abilities rather than focus on the fact that he’s lost so much. We didn’t talk about it too much as a family. His friends knew because it was obvious there was an issue. But we weren’t the type of family that talked much about emotions, we kind of keep things hidden. He was mad about it, which became clear as the dementia progressed. His ability to walk was compromised, his balance was compromised, his speech was compromised, and he would become angry at what he couldn’t do. I would have loved to have known — I should have asked him but I didn’t — what it was like for him, what was he thinking about as it was happening. I never had that conversation with him.
TP: Did people treat him differently after his diagnosis?
Wurzer: Oh my yes. It really irked me. It was like putting a big D on his forehead. People treated him like he had nothing going on up there, when indeed, he was still in his body. He just couldn’t communicate very well. That was really frustrating to watch.
TP: Acceptance is such a big hurdle for people.
Kramer: Once a family comes to acceptance, you can provide a happy life for the person. With a condition like Alzheimer’s, the person is time traveling, skipping back and forth. But the problem with that is not the person’s problem, it’s our problem. We want the person to be here, right now. If we find a way to accept the fact that the person has moved on to a different level of existence, well, that’s not a bad way to live.
Wurzer: That’s exactly right. For those individuals that I have met who have memory issues, I now just try to meet them wherever they are.
TP: I think we’re all scared of chronic illness so much because we’re all afraid of pain.
Kramer: When I was first diagnosed I was told that ALS is generally painless.
Kramer: The reason you’re told that is it’s not like you have a big tumor pressing up against something, you’re just basically losing motor capacity. But with the loss of motor capacity comes a lot of physical pain.
TP: Do you feel you have been well served by doctors in terms of pain management?
Kramer: The way that we view pain management in this country is not ideal. Now that I’m in hospice if I had not brought the pain medication that I’m on, my choices would have pretty much been Ibuprofen, Tylenol, aspirin, and then the opiates. There’s no in between. Once you get into the opioids, well, that is really heavy stuff. They push down on certain kinds of functioning. I’ve refused them but luckily because of a surgery I had about a year and a half ago they put me on Tramadol, so that’s what I take, and it works most of the time. We don’t do pain management in this country very well. There’s an interesting bill before Congress right now put together by the senator from New York, Kristen Gillibrand. She and Cory Booker from New Jersey and Rand Paul from Kentucky have put together a bill that says the federal government will not interfere with people who are taking medical marijuana if it’s legal in their state. Doctors are afraid of using medical marijuana because they’re afraid the feds will come after them. And because it’s classified as a Level I drug it’s very difficult to even do research with it. We know that there are drugs available but we don’t use them and are afraid of them. The only way that we are getting them now is through the work of grassroots types of movements. But if I had not brought Tramadol with me I don’t think I would have gotten Tramadol. And as much as I try, there are things that you just cannot meditate away.
Wurzer: Part of what we talk about in the book and what we talk about on the air is that Bruce is on the fringes of life, and what he sees there is really quite beautiful. The goal is to try to not be afraid of what’s to come, and to learn to live your life now for god’s sake. Don’t wait until you have a terminal diagnosis to start doing it. Seems like a pretty silly waste of time, doesn’t it?
TP: I really loved how in the book you both touched on music being a place of peace and salvation for you.
Kramer: Today I was listening to Samuel Barber’s setting of Matthew Arnold’s poem “Dover Beach” and decided I really wanted to delve into a poetical analysis of it just because I was hearing things in it that I had never really put together before. The last stanza begins with the line, “Ah love, let us be true to one another.” The world is so difficult and there are so many things that are going to come at us. But by being true to one another we have a way of holding them at bay and living our lives in a way that feels worthwhile and meaningful. I had never put that line together before. When I was a young music major I sang the piece. But when I was a young music major I was immortal. That is no longer the case. I find that a lot of music that I turn to now is not the music that I would have turned to before ALS. Now I turn to music that is much more contemplative, ethereal, mystical. It reflects where I feel myself in this existence. As I feel this body letting go of this physical life, which we all value so much, there still is a beauty that I feel l feel like I’m still a part of.
Wurzer: When I first came here to Bruce’s condo the walls would just reverberate with sound. Bruce has quite a system in here.
TP: Cathy, I appreciated in the book how you stepped out of the role of interviewer and shared details of your struggles the last few years, with the loss of a parent and a marriage and just generally working all the time, getting up so early to do “Morning Edition.” It seems like this project with Bruce has led you to challenge some of your routines, yes?
Wurzer: Bruce has been such a wonderful teacher for me. My whole life I would tend to power through my life, just busy all the time, and my plan was always just to put my head down and keep going until I couldn’t anymore, and then I’d drop over. I’ve done that a number of times in my life. Bruce’s question for me is always, “How is that working for you?” [Laughs.] He’s teaching me to just be in the moment. It’s so easy to surround yourself with the shield of business, which in its own way is a form of avoidance. My temptation is to just keep going and drink a lot of Diet Mountain Dew and be really perky as nobody wants to hear a bummed-out radio announcer. Bruce has helped me to be more present and kind to myself.
TP: You both underline the importance of humor in the book.
Kramer: You couldn’t make up a lot of the things that go into dying. I don’t see how you can get through it without some form of humor. There are things that I withhold writing about and talking about for the most part that have to do with the day-to-day things, like how do you get ready for a day without moving your arms and legs? These things have their own humor. If you don’t find the humor in them, the only other choice you have is depression, or anger. I choose humor. But I think it’s a choice.
Wurzer: People are surprised that we laugh as much as we do.
Kramer: There was an interesting op-ed yesterday in the New York Times from a guy who is 73 and who is a grief counselor and he has ALS. He writes that 10 years ago when his wife was diagnosed with leukemia, people would say to him, This just isn’t fair. But her answer to them was always, Well, who else is it going to happen to? We act like this is such a unique experience. A lot of that is our avoidance of it. But you come to fully accepting and actually embracing your own death, there are things that open up for you that you just can’t see without that, and some of them are quite funny. The act of laughter offers me as much physical relief as the act of crying. I cry a lot, too. Humor is one of those gifts that is given to us. We can embrace what we’ve been given by laughing at some of the things that happen. It’s a way of giving up control.
Wurzer: My father was always a bit slap-sticky, he had this Jerry Lewis-type humor. We would laugh a lot together and a couple of his caregivers were surprised that we would find humor in some of the things that would happen, but he did, and if you knew my dad you’d say, yeah, that’s Fritz.
Kramer: The caregivers I have, the ones that I really get along well with, they laugh at life. Sometimes if I’m having a bad day I might resent the fact that they’re laughing. But it helps remind me that there’s really something beyond the fact that I’m having a bad day.
TP: Viewing the book through my own selfish liens, I’m wondering how I can learn from the two of you and live with less fear, and do it now before I have a chronic illness.
Kramer: There’s that old saying, Youth is wasted on the young. [Laughs.] If you look at ALS as a magnifying glass, a very powerful lens, you can view it as something that focuses things quickly because it’s moving your body in the aging process. Then those insights, those ideas that might not come to you until you’re 70, are suddenly right there in front of you. I had the great fortune of being able to work for almost two years after I was diagnosed. What ALS did was change my perspective about the things that are important. I would think about going to budget meetings while I was a dean at the University of St. Thomas. They seemed so important at the time. But they mean absolutely nothing. What means something is, Did you help someone? Did you lift up someone’s spirits today? Did you connect with someone on a personal level? Did you listen to someone? Had I found that earlier, and don’t get me wrong because I think you can look at those kinds of questions as the Kumbaya School of Leadership, and I think people who know me would say, No, that’s not how Bruce Kramer did things. But what it did do was allow me to feel far more connected and far more a part of people’s lives as they are doing work that was really important for them. ALS gave me that permission.
TP: Bruce, I was really touched in the book in the section where you wrote about how you and your wife gave such care in planning how you would tell friends. You knew this would be hard for people to take. For the most part it seemed like those discussions went well.
Kramer: They went well, but only because we were extremely careful about it. I had to be. I was the dean of a college. I had to approach the problem as I would approach any problem. In planning how you’re going to communicate you are also defining how people are going to treat you. You are defining what the frameworks are of your comfort level. You are also defining how open you are going to be, and in that openness comes this human connection.
TP: It’s impressive that you gave such consideration to the other person in the exchange, as people don’t know how to act. Even with us from a bit ago, I didn’t know if I should reach for your hand.
Kramer: You couldn’t of shaken my hand with this cat on my lap. Do I throw the cat across the room or what? [Laughs.] I find myself saying to people, You can take my hand, because I still value touch. One of the things that makes us human is that we touch each other. One of the ways that we create boundaries is to communicate that touching is not appropriate. I find that I have to be clear about what it is that I want, and that started right from the beginning. Plus I get kissed like you can’t believe! I miss going to church because I probably get kissed by 80 women. What man can say this?
Wurzer: Bruce is a chick magnet.
TP: Cathy, you write in the book about the invisibility of disability.
Wurzer: I don’t know if it’s because people are uncomfortable around people with a disability or what, but people will look right through the person, right over the person, right pass the person, they’ll get out of the way of the person. It’s really obvious when you’re with a disabled person in public. People don’t know how to act.
Kramer: Often people will TALK MORE LOUDLY, and slowly, to you.
Wurzer: Oh my god yes. My father would say back to people in the same cadence and volume, I DO UNDERSTAND YOU.
TP: Can you tell me about the writing of the book? How did that work?
Kramer: We talked about it for a year before we signed the contract with the U of M Press. We tried some prospectuses. It just never felt right. Then I think when we mutually came together with Cathy and Ev and it just fell into place. We signed the contract May 31 and we had the first draft completed by August 2.
Wurzer: I remember going on vacation on my birthday July 4 and coming back and Bruce had already written three chapters. And it gathered this momentum, and I can’t even tell you how it happened. It just came together and it was an amazing experience. We worked well together. It just came out of us.
Kramer: It of course had an urgency.
TP: Bruce, can you share a little bit about how your inner life has been transformed by your illness?
Kramer: I’m a deeply spiritual person but I’m also a very empirical person. And if you look at the evidence that we have, the stories that we have in front of us all of the time, you see reasons not to be afraid. If you embrace the gifts of life there’s no reason to be scared. We all know there’s a birth, we all know there’s a death, we all know there’s a life that happens in between. For some reason we lop off the death. I think in coming so close to my own death, what has opened up for me is love. Love is really what this is about. I inherited my grandmother’s china. But I’d throw that away just for a day to sit with my grandmother again. But I can close my eyes and still hear her voice. I can feel her love for me. And I can feel my love for her. Those are things that are intangible, they are not concrete, yet you cannot deny their existence. And those things will travel on. Just the fact that one can observe that, that it’s so real, why do we deny ourselves such a beautiful gift that comes from our death?
Wurzer: A few days after my dad passed away I came here to talk to Bruce and I obviously was upset, and Bruce said, But can’t you feel your dad? He’s still here. And it’s true. I can’t give you examples other than some odd things that have happened since his passing a year ago but I know he’s around. It’s palpable. I can’t really articulate it. It gives me hope.
Kramer: Cathy sees hope where I see possibility.
Wurzer: Bruce always says that! He doesn’t believe in hope; he believes in possibility. It gives me hope that there’s something beyond this. As Bruce always says, energy can’t be destroyed, it just takes a different form. What’s the word that you use?
TP: Bruce, what’s unusual about you and this book is that you’re talking about more than just coping through illness. You’re talking about finding joy in it. I haven’t seen that in a lot of books on this topic.
Kramer: What ALS has done for me is opened up vistas. It’s allowed me time to think that I never had before, time to reflect, time to hear music more deeply. Acceptance and growth is a much better place than ringing our hands at the unfairness of inequitable treatment that we feel we’ve had. It’s true. ALS has brought me a lot of joy.
TP: I hope I’m not asking you to give away anything here but I have to ask about the Dalai Lama moment in the book.
Wurzer: Isn’t that the coolest thing? One of the many things I’ll always remember is that when I was on the stage with the Dalai Lama the stage was dark like a cave, you couldn’t see anything. My job as moderator was to take His Holiness by the elbow and bring him to the side of the stage to receive an award, and people are clapping and so I’m following him, and I knew that Bruce and Ev and their family were over on that side of the stage. But then suddenly the Dalai Lama just went straight, like he had radar, over to Bruce. I wasn’t sure what was going on, but then it dawned on me. He sees Bruce. But there was no way he could have actually seen Bruce. I couldn’t believe it. And he went up to Bruce and said, “There you are.”
Kramer: I burst into tears. I was stunned, just stunned. When he touched the cloth to his head as a blessing and said what he did, I was so confused. But then I picked up on the meaning. It came at a time when I was cycling through so many emotions, and I had come to a point where I felt that I was done. What he told me was that I had things still to do. There were things that I still could do. To this day it’s difficult for me to talk about it without getting emotional. It was such a beautiful moment. (Kramer quietly starts to cry.)
Wurzer: That was the moment when my dad was dying up north.
Kramer: That was the thing, your dad would be dead in less than 24 hours.
Wurzer: I’m standing there with the Dalai Lama, who is giving Bruce a blessing, and he’s telling Bruce that he’s not done, but my father was soon to be done. There was a lot going on that day. It was a beautiful experience.
TP: What’s next? Are you going to keep doing MPR segments?
Wurzer: We’re going to keep talking, just like we’ve been doing. We just finished a two-parter.
Kramer: We thought we were going to stop at 20.
Wurzer: We’re up to 35. In the beginning I was curious how busy “Morning Edition” drive-time listeners were going to handle heavy conversations about living and dying but the feedback has been wonderful, and from all kinds of different demographics and age groups. Clearly there’s a hunger for this.
Kramer: We will continue to have conversations.
TP: Bruce, you mentioned earlier that you have to laugh or you’d slip into depression. And having read the book I know you’ve had bouts of hopelessness. How have you kept yourself from falling deep into the pit?
Kramer: Well, I have been sad a lot. I cry all the time. Bu there’s a difference between sadness and despair. Sadness is a pool of energy. It’s something that gives you the strength to acknowledge the beauty of something. You know how lucky you are to have had that. Despair is debilitating. I’ve had to work to avoid it.
TP: And how do you manage your feelings of loss for the life you have had with Ev?
Kramer: Here’s where I have my control-freak tendencies. You try to encourage the other person to do things, to reach out to people, but I keep thinking, I have to help her get things laid out for the post-Bruce time. The question is: How is that working for you? Of course she will do this as she will do it. But the fact that we have had the opportunity in the last four years to completely change a relationship that we were really happy with, and to still come about with great happiness and a sense of appreciation for our former life, despite the fact that I’m dying. I can’t help but think that that is the love that I’m talking about. That will go on, and there will be hard days for Ev, there will be days where she won’t want to get out of bed. But she will.
TP: I think the two of you have made a grand contribution with this work. You’ve giving language to something people have a hard time talking about. Not a bad day at the office.
Wurzer: I feel like I’m meant to do this with Bruce. I don’t know why, but it’s always felt like what I was supposed to do.
Kramer: Cathy, I think we’ve just been trying to tell a human story.
— On March 23, 2015, four hours after we posted this interview, Kramer passed away with his family and Cathy at his side.