This article first appeared in The National Book Review
We recently ran a review of We Know How This Ends: Living While Dying by Bruce Kramer and Cathy Wurzer, which recounts Kramer's experience living with -- and dying from -- ALS, or Lou Gehrig's disease. Here, Wurzer, the host of Minnesota Radio's Morning Edition, is interviewed by Jim Swearingen, a former student of Kramer's.
Q: How did you first meet Bruce Kramer?
A: I met Bruce Kramer a few years before he was diagnosed with ALS. Bruce, a very talented musician, had arranged Christian hymns for an Indonesian gamelan group and I thought my public radio audience would be interested in it. He did the interview, and about a year later we checked in with Bruce when he and the Minnesota-based group performed the hymns in several Muslim countries in Southeast Asia.
I didn't know at the time that Bruce had fallen on that trip. His left leg just gave out while on tour. He had experienced several such falls back home and his left foot would "flop" in an odd way while walking. His doctors thought it was a pinched nerve, because he was in such great physical condition. But neurological tests revealed the life shattering diagnosis of ALS on December 6, 2010.
Bruce started blogging about his life with ALS shortly after that diagnosis and it wasn't until the late winter of 2011 that a mutual friend suggested I interview Bruce about his life with a terminal illness. I realize it sounds harsh to say this, but at the time, I really wasn't convinced that talking to a dying man for a breakfast hour radio show would be something listeners would want to hear.
That's the excuse I gave that friend as I tried to deflect his continued prodding. What I really didn't want to admit at the time was that my personal life was in turmoil, with a dying marriage and a father who had just been diagnosed with dementia.
I agreed to meet with Bruce and his wife Ev Emerson at this mutual friend's house to feel out the situation and find out what they were willing to do, how we could proceed, but again, I wasn't sure I was up to the task.
Q: How sick was he at that point?
A: Bruce walked in using a cane and he had a black neoprene orthotic on that left foot. It looked for all the world as if he had broken his foot or ankle. Bruce knew that as a college Dean, and a well-known person on campus, he'd be asked about that cane so he and his wife created something they called "The Tell."
He decided that telling the inquiring person he had an incurable and ultimately fatal illness like ALS was a very potent, poignant, teachable moment. He'd say that it allowed people to experience his life with ALS for just a few minutes.
Q: He was dealing with a lot - why did he also want to write a book?
A: Bruce had been toying with the idea of writing a book, based on his blog entries and our radio conversations, for about a year prior to our literary collaboration, but he wasn't sure how it could be organized -- and he just didn't feel ready to write a book at that point. Frankly, he and I couldn't have written such a book before we did.
Bruce and I were in our own crucibles, being tested by our separate trials, and that is included in the book. Because of that, the book has a depth that wouldn't have been there a few years ago.
Some people have made the mistake of assuming this book is simply a memoir and that it was a way for Bruce to leave a legacy. Bruce would dismiss that, saying that legacy is an act of ego. This was his last, best way to continue to teach, and teaching, he'd say, is an act of faith.
This is much more than a memoir. It is an unexpected view inside a terminal disease. Bruce's is a path all of us will have to take.
Q: Bruce frequently uses, in fact he invents, the term "dis ease," as opposed to the single word "disease." What does dis ease mean?
A: Bruce used to love wordplay. He was also quite precise in his use of language. During my first interview with him, I thought he had misspoken when he talked about his blog "The Dis-Ease Diary" but he deliberately de-coupled the dis from the ease. He said all of us have some kind of dis-ease: things that disrupt what we hope will be our lives of ease.
We all carry emotional, physical, spiritual dis ease or wounds and we can either acknowledge and embrace these things and grow through our dis ease or we can deny and deflect. ALS revealed to Bruce his dis ease in its many forms. He made the conscious choice to accept and work through it.
Q: What was it like to collaborate with someone who was essentially dying right in front of you?
A: Wow. That's a heck of a question -- a good one though.
One of the reasons I almost backed out of the radio series was an initial reluctance to immerse myself in someone else's pain and suffering while I was dealing with my own (my failing marriage and the failing health of my father).
It would have been much easier to let another reporter tell this most human of stories, but just as I was going to back out, literally the day before, I got a gut feeling, a knowing (I've called it a "cosmic ping") that maybe I was the perfect person to tell Bruce's story. I have an ability to listen carefully and compassionately and I'm a good storyteller. I pushed past my fear and I'm so happy I did.
Of course I would feel great sadness watching Bruce's body break down and his frustration with that. But I didn't want to carry that sadness into the room. He didn't need that. Early on, I pitied him but I quickly shed that pity. Pity is an emotion belonging to an able bodied person.
Bruce had an all- encompassing presence that wasn't diminished in the least by his disease. I learned a great deal from him about how to move through loss and limitation, disability and disease. While he wasn't happy his life was ending prematurely, he knew that was the hand he was dealt and he embraced the losses and limitations and really lived a full life. It was an amazing experience to watch his growth.
We wrote the book in about two months (he joked he was on a literal deadline), with me visiting twice a week to hash out concepts and themes, but the bulk of communication was done via e-mail. We'd send finished chapters back and forth using Drop Box.
We worked well together. We were a good team.
Q: What was it like emotionally to be in such a close working partnership with someone undergoing the descent he did?
A: He was living such a rich and full life in spite of ALS that his sudden and rapid descent toward death at the end of March 2015 (due to the flu of all things) came as a shock to us all. We were all caught off guard. That sounds even stranger doesn't it? Bruce tried very hard to prepare us but really, like a car crash, you can't brace for the impact.
I knew "how this would end" but didn't know when death would come, and when it did there was so much left to say. I guess I was lulled into a false sense of security because he seemed to be doing well despite the ALS. It was heartbreaking to have to say that final goodbye. I really miss him.
Q: How did your time with Bruce change your life and your own thoughts about dying?
A: Bruce Kramer transformed my outlook on what it means to live. I mean really live with an open heart, accepting our frailties and those of others, exploring the beauty of vulnerability and learning to love with honesty and without fear. I was a person very much shut off from my feelings and quite emotionally distant with others.
That has changed. Bruce was love personified and he taught all around him that to love and be loved fully is one of the great lessons we humans are here to learn. None of this is new, but Bruce was a great example of how to do that.
As for death and dying? I have had the heart breaking privilege of being with my Dad and Bruce as they took their last breaths. Based on those experiences, I now feel that death is simply another life transition. It isn't the end.
One of the laws of the universe is that energy can't be created or destroyed. It can only be changed from one form to another. Bruce used to say that a lot. I'm naturally quite curious as to what energy form Bruce has taken, but whatever that is, however that has occurred, I know he's still around and his presence is felt in the most delightful of ways.
This interview was edited for publication.