Embracing life as death draws near

New book reflects on the gifts of a terminal illness

MPR's Cathy Wurzer and Bruce Kramer. Credit: Photo courtesy MPR News

Bruce Kramer has transformed his terminal illness into an opportunity to cherish his life and loved ones with a renewed vigor.

Kramer, former dean of the College of Education, Leadership and Counseling at the University of St. Thomas’ downtown Minneapolis campus, hopes his reflections and insights from living with ALS can help other people frame their lives and learn to focus on what’s important.

He has collaborated with MPR’s Morning Edition host Cathy Wurzer on a series of radio conversations exploring how he has adapted to his new life after being diagnosed in 2010 with the neurodegenerative disease. The two have also teamed up on a book project called “We Know How This Ends: Living While Dying,” which will be released in April by the University of Minnesota Press.

Wurzer has formed a special bond with Kramer and his wife Evelyn Emerson as they have explored what it means to truly live in the face of death. Wurzer said Kramer has been an inspiration as she has grieved the recent death of her father after he battled dementia.

“The story is all of us are given a choice about what we are going to embrace in our lives,” Kramer said. “All of us know we are going to die. If you look at those two realities, then the question is do you embrace life as you die? Or do you embrace death? I feel that I have been very lucky that I can talk about embracing life.”

Here are highlights of a recent conversation with Kramer and Wurzer.

Q: How do you feel now that the book is complete?

Wurzer: I feel gratified — a great sense of gratitude that we’ve reached this point and that the University of Minnesota Press thought there was value in this story. Writing a book is difficult — your whole soul gets poured right out there in front of God and everybody. I am happy we can see that all of our efforts have come to fruition. It’s right in front of us, which is really wonderful. 

Kramer: I am musician and when I finish something I always feel a certain sense of letdown. I have to really fight that. When we sent in the most workable version of the book, I really did feel letdown. I didn’t want to stop working on it. …

It’s interesting now that since we’ve turned in the book I have had the chance to do a little more blogging. There are parts of it I wish I could include in the book.

… I really think what lead up to — the time Cathy and I have spent together, the deepening of a friendship — the book represents all of that. That part of course, I feel enormous gratitude. …

One of the things that has interested me so far is how young people have reacted to [the book.] I kind of thought this is a book framed by a dying man. The fact of the matter is that the younger people who have had access to it, they’ve talked about how much it has helped them to think about the meaning of their own lives — what they want to do with the time that they have. That is also quite gratifying. …

I don’t look it as a project anymore — projects have beginnings and endings. What I see with this is the potential for it to become more of a movement that people begin to really use some of this to frame their own lives and help others that they love.

It just seems that in 2015 we keep being pushed and encouraged to be very superficial — to really not deepen meaning. We keep turning back to a consumer and materialistic culture for a sense of meaning yet in the end, that sense of meaning is meaningless.

Something like this asks people to really deepen their own thinking about what makes a well-lived life, and we all know that this life is temporary. We know there is an ending to it. We know we’re not going to get out of it alive.

Q: What would you say are some of the key gifts you’ll cherish from this experience working together? 

Kramer: To me the key gift is that when you look at the receipt of a diagnosis like ALS, the neurologist that diagnosed me honestly believed that he was giving me a death sentence. And yet when you look at the work that Cathy and I have started to do and then the friendship that Cathy, Ev and I have developed, you see this juxtaposition of something that says, ‘you’re dying,’ but at the same time, the experiences we’ve had say that we’re living — and we’re living beautifully and we’re living in ways that have touched us both.

I prefer to focus on that side of it. The dying part is a given. All that it has done is to allow me to focus on the gifts — the unseen gifts that ALS has brought, and one of them is this wonderful friendship with this wonderful person (Cathy) to my left that has really enriched all of our lives — Ev and my life together.

Wurzer: Most of my friends and co-workers when I first got into this project thought, ‘boy — what a downer.’ It’s about death and it’s all about darkness, sadness. And yes, there has been sadness talking about death, dying and diagnosis. During the course of our conversations, my father was diagnosed with dementia and he died a year ago March 2. During our conversations, Bruce was almost like my dad’s voice. It was really interesting because I would talk about my dad and what was going on. Bruce prepared me for my dad’s death better than anybody could have really, which was a huge gift.

Bruce is absolutely correct — the friendship all three of us has had against the backdrop of what most people would think is dark and sad is actually this bright, brilliant loving relationship. My life will never be the same because of Bruce Kramer and Ev Emerson. It has been so enriched and deepened in such a wonderful way that I never thought possible. 

Q: You talk about ALS turning you inside out? What do you mean by that?

Kramer: We all work so hard at putting up boundaries — facades. We construct a public persona that people often have a hard time deconstructing in their private life so that we think that is what we are about.

But when you have ALS there is no lying about it. There’s no such thing as hiding the fact and so all of those boundaries get put on to the inside and there you are — you’re pretty well laid out for people. The public and the private merge and become one. That turning the inside out is the loss of those facades and a real focus on being honest and being truthful.

Remember that’s coming from someone who had to play the politics of leadership. University politics can be pretty brutal, believe it or not. There just isn’t space for playing those games anymore. So being turned inside out has been another gift. In being more honest with myself, I find myself being more honest with others. I say ‘I love you’ a lot more. I cry a lot more, and there’s nothing wrong with that.

Q: What do you hope comes from the release of this book?

Wurzer: The space (for readers) to do their own reflecting on their own lives, and also not to fear death. I know that sounds strange because we don’t know what’s beyond, and that can be a very fearful thing.

Bruce is one of the most joyful people I have ever run into even against this backdrop of impending death. I have also had to change my personal views about death and dying because of our conversations. Also watching Bruce and Dad on parallel paths, I don’t have that fear of dying anymore. It’s a part of life. … It can be very beautiful.

Kramer: We are given three things we know we can count on — there is birth, there is life and there’s death. We generally do pretty well with birth and life even though life can be extremely challenging and hard. I think one of the things that ALS has helped me to realize is that those challenges only get harder. In many ways, each iteration of living is going to be more difficult, and yet we prepare for that. Then we hit the reality of our deaths and suddenly this great fear is thrown up. We love our lives. We love it when a baby is born, but there is this tremendous fear of this unknown thing — death. One of my favorite cartoons is two babies in womb. One of them asks the other one: ‘Do you think there is life after birth?’

In a way it kind of points to the way we see death. What death has done for me is it has allowed me to focus so much more deeply on the things that mean more to me than anything else in life. If you take that as a gift, it’s a wonderful gift. As I think of these final months of my life and the fact that death is sitting in the room with me all of the time, and yet what death has become is a way of looking at life that is so much more joyful. Just having my kids come over and hangout — I’m so happy to have them here. Before I would have been happy but I don’t think it would have meant as much to me.

To me one of the things that I hope that comes out of this is the message we don’t have to fear. We’ve been given this great gift. By avoiding it, we’re probably avoiding one of the most wonderful parts of our life. It’s not about what happens after. What happens afterward is going to happen whether I believe it or not, it’s about what we do with this life right now. So in the long run, what I see is the greatest possibility is the idea that we can live fully as human beings and that’s the message that comes out of the book. 

>>>

Book launch event

What: A celebration for “We Know How This Ends: Living While Dying” by Bruce H. Kramer with Cathy Wurzer. MPR News host Kerri Miller will lead a conversation with Kramer and Wurzer.
When: Wednesday, March 25, 6:30 p.m. (doors open), 7 p.m. (program). Books will be available for purchase
Where: O’Shaughnessy Education Center Auditorium, University of St. Thomas, 2115 Summit Ave., St. Paul
More info: WeKnowHowThisEnds.brownpapertickets.com