As seen in the St. Paul Pioneer Press on April 7, 2019.
We’re all students and teachers, whether we choose to be — or even realize we are. It’s the give and take of shared experiences, coupled with insights and lessons learned, that help us to navigate this complicated experience called life.
Though Cathy Wurzer has made a career as a political reporter on radio and television, she became both student and teacher after she met Bruce Kramer.
A dean at the University of St. Thomas, Kramer was a musician and educator whose final lesson plan was about how to live when you are dying from ALS, a progressive, incurable neurodegenerative disease.
Soon after he was diagnosed, Kramer decided to pursue healing in the time he had left.
Preferring the term “dis ease” to “disease,” in the final years of a life that ended in 2015 Kramer candidly addressed caregiving, planning, and living in the moment in his “Dis Ease Diary.”
He pondered deep questions that require us to delve in uncomfortable territory.
What does it mean to seek healing even if there is no cure?
How does one live with, as fully as possible, a serious illness, disability or impending death?
At the urging of a colleague, Wurzer interviewed Kramer on Minnesota Public Radio. One interview led to dozens. Their unexpected friendship, marked by parallel journeys through personal loss, generated a deeply reflective book, “We Know How this Ends.”
Wurzer expected the project to die with Kramer. But hours before he died, he asked her to continue on.
“Look for the ripples in the work.”
She was exhausted, depleted from the deaths of first her father, then Kramer, as well as the end of her marriage. It was months before she recalled Kramer’s request and a vision of next steps began to take shape.
It was the shared experience of finding purpose in the pain that drew me to her work.
When I was suddenly widowed in 2009, I worried more about my children’s future than my own. With a blended family of four, including a son with autism, were I to become ill or incapacitated or die, they would have to make decisions with no road map – unless I got on it.
It’s curious. We give our loved ones so many gifts. But do we give them the ultimate gift – a plan for the end?
I resolved to make that gift. Within months I’d made the important decisions and secured the proper documents. It was the greatest gift I could have given my family – and myself – for it protected them and gave me as much peace of mind as possible.
It was hard. I had to name and face my fears. We must get past the fear to arrive at action and do the right thing for our loved ones.
There are so many fears.
Fear of what happens after we leave this life.
Fear of how others will manage after we are gone. In my case, how would my son with autism get by without the mom who is his everything?
How would other family members adjust to unexpected changes or responsibilities being thrust upon them?
The powerful lesson that is Kramer’s legacy is this: There is a way to push past the fear. But it requires action.
Step into the fear.
Meet fear with love.
Truly live while we can, then live right through the tough stuff when it comes our way.
Plan for the inevitable.
When she came to this understanding, Wurzer found the ripples – the next chapter of a story that was not quite finished.
Though she began as Kramer’s student, Wurzer has become the teacher. Through a new nonprofit called End in Mind, their work continues.
Partnering with health-care professionals, she hosts gatherings in communities that encourage attendees to focus on living with the end in mind.
Poetry readings and music promote mindfulness and reflection. Leveraging the power of stories from patients and caregivers, Wurzer spearheads conversations about topics Americans prefer to avoid: how to live with chronic or terminal disease, care for someone who is ill, or say goodbye to someone who is dying.
Living with the end in mind has practical and spiritual elements, be it signing health-care directives, mending fractured relationships, or expressing love and gratitude.
Living with the end in mind requires us to focus on the here and now, as opposed to what happened yesterday or what tomorrow might bring. For me it’s a personal challenge best met by putting away my phone and zeroing in on the people I’m with and the place where I find myself.
For Wurzer it required her to shed the protective armor she’d worn both personally and professionally. Through words and actions, Kramer taught her how to be honest and vulnerable and to seek or accept help. Vulnerability can be both beautiful and uncomfortable, she says, acknowledging her personal relationships are different now.
Though he lived with a horrific disease, Kramer was not bitter. He wrote, “Dis ease presents the choice of being open or closed, and opening to her lessons, her gifts, her challenges, is not easy. But dis ease clarifies vision, bringing sight to the blindness of what you thought you knew about living, light to the darkness of cynicism that life’s grief piled upon itself can foster. I know ALS is a horror, yet when fully embraced, it has taught me, it has revealed to me pure unsullied, uncontaminated, unbelievable love.”