Lessons in Living While Dying

Bruce Kramer and his friend, Cathy Wurzer, also his writing and broadcast partner, record a conversation about living with ALS. Their collaboration has evolved into the End in Mind project. (Photos courtesy of Minnesota Public Radio)

Speaking does not come easily anymore for Bruce Kramer of St. Paul, MN. Secured upright in a high-tech wheelchair, the longtime teacher now talks through a plastic respirator mask attached to a BiPAP machine, which helps him breath by forcing air into his lungs 24 hours a day. Without BiPAP, a second breathing apparatus implanted in his diaphragm and a team of volunteer an professional caregivers, he would probably die within days.

Bruce has amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease), a progressive degenerative disease with which he was first diagnosed in December 2010. Despite his deteriorated condition, he still has much to give and much to say to others. “I want to die fully alive,” he said.

‘Order in Cacophony’

Bruce compares his four-plus years of “grabbing and living into” his approaching death to conducting an orchestra or chorus. “It’s so wonderful. You have to make harmony out of dissonance,” he said. “That’s the challenge of ALS. I have to work the problem. I have to find the order in the cacophony.”

The conducting mataphor comes naturally to Bruce, 59, a lifelong musician, former choir director and former dean of the University of St. Thomas’ College of Education, Leadership and Counseling, in St. Paul, MN.

“I used to imagine I’d be a great musician,” Bruce said, recalling his desire to sing opera. “I was competent, but I didn’t have the pipes.” The same was true of his ambition to be a great teacher, a great principal and a great dean. “I found that I was competent,” he said, “but none of those pursuits came to the level I expected of myself.”

A ‘Rebirth’ in ALS

Bruce feels differently about his current pursuit, drawing on his past accomplishments to become a chronicler of living while dying. This final challenge, what Bruce described as “my rebirth in ALS,” brings all of his experiences together “to embrace my disease as a joyful opportunity for intellectual, emotional, spiritual and even physical growth,” he said.

Rather than deny his terminal condition, Bruce celebrates the growth it has afforded him in “understanding, compassion and humanity.”

Emmy Award-winning journalist Cathy Wurzer records one in a series of conversations with Bruce Kramer that became the basis of their book, “We Know How This Ends.”

Bruce has written a book, “We Know How This Ends,” with Cathy Wurzer of Minnesota Public Radio, who began broadcasting an ongoing series of conversations with Bruce in December 2011.

It was Bruce’s CaringBridge site, and a separate blog he titled “Dis-Ease Diary,” that first caught Cathy’s attention, and Minnesota Public Radio eventually produced and aired more than 30 conversations between the two.

“They struck listeners on a very deep level,” Cathy said, “with many seeing themselves reflected in Bruce’s experiences, even if they aren’t dealing with a terminal illness.”

We Are All ‘Dis-Eased’

That is exactly the engagement Bruce intended when he started “Dis-Ease Diary.” What began as a joke—Bruce called it “dissing the ease”—evolved into a realization that “we are all dis-eased” in one way or another.

“We Know How This Ends” raises some eternal questions,” Bruce said, “but it doesn’t answer them. People hunger for this kind of dialogue. They hunger for truths … with a small ‘t.'”

A longtime church choir director, Bruce has a strong faith. The titles of four of the 26 chapters in his book begin with the word “faith.” Faith Part II, for example, is devoted tot he death of his “dear friend in ALS, Paul.” Faith Part IV recounts a Palm Sunday sermon he gave at a Methodist Church and a remarkable encounter with the Dalai Lama.

‘You Are Speaking For Me’

The sharing of his story, in so many ways, has given Bruce a strong sense of responsibility. He remembers receiving an email from a woman in Australia who was dying of chronic obstructive pulmonary disease. “You are speaking for me,” she wrote, telling of her isolation since the deaths of her husband and son a decade before.

Bruce and his wife, Evelyn Emerson, were married for 33 years. As his illness progressed, Bruce was sensitive to the challenges Ev faced as a caregiver.

From the outset of his diagnosis, Bruce has had no interest in what he calls “ALS voyeurism.” He wrote on CaringBridge and the Dis-Ease Diary for personal therapeutic and spiritual reasons, and in so doing discovered wider need. On of the chapters in his book is titled, “It Isn’t Just About You,” a loving nod to Evelyn Emerson, his wife of 33 years, to other caregivers, and to all of his “dis-eased” readers and listeners.

‘I Have Learned So Much’

Bruce, who was once a triathlete, regularly refers to “the gift of ALS, a gift wrapped in death.” However, he wants everyone to know that he is “pissed” about his situation as well. As angry and sad as he sometime feels, and despite the growing pain and debilitation that has limited his mobility to just his neck and his head, he said, “if I had to give up what I’ve learned in four years in order to be cured of ALS, I wouldn’t do it.”

A statement like that might be hard for his wife, Evelyn, to hear. After all, no one has been closer to Bruce than she since his diagnosis. However, she said, “I told Bruce early on that I would walk with him to the end and support his decisions.” Now, she, too, speaks of the gifts of Bruce’s disease, the gift of knowing “How much we are all fellow sufferers. We all need each other.”

This article first appeared in the March 18, 2015, edition of Villager, a community newspaper based in St. Paul, MN. The article, edited for clarity, is republished with the permission of Villager. Bruce Kramer died on March 23, 2015, but his legacy continues through End in Mind, a Minnesota nonprofit dedicated to creatively exploring what it means to thrive with a serious disease, disability or impending death.

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  • Debbie Burrow

    My mother also had ALS. We notice something wasn’t right when my father was diagnosed with brain cancer. He was diagnosed and 2 weeks later was called to come home. My mother’s doctor thought she was having mini strokes, after seeing a ears nose and throat doctor because she was having trouble swallowing he sent us to a neurologist. We where there 5 mins. He wrote on a slip of paper put it in my hand and walked out of the room. ALS 3 years the most. I was shocked got her schedule over at St Louis University they verified the information and got her set up in a program right away. They were extremely helpful. My mother was amazing through her journey. She taught me how to live while dying. We would set a timer and cry but when the timer went off we stopped crying and went on With our day. She discovered Jesus Christ and after her baptism she found peace. She got to travel to Hawaii, Las Vegas and Florida. She went to all our family gatherings, although she could not eat or talk anymore it did not stop her from enjoying herself. All her adult children lived near by and we all helped her to be able to stay at home. On Thanksgiving 13 years ago we had one of the best days. She wrote for me to go home and bring over everyone’s xmas presents. All her grandchildren and great grandchildren were there it was a wondering night. The next day she was called home. This disease is like none other but we were bless with the hospices nurses and aides which became part of our family. I will keep you in my prayers and keep on living your testimony is Gods gift.