I gave up on heroes a long time ago, but I still believe in prophets -- people who have a vision of what needs to be told, and the words and the imagination and the guile to tell it.
Here in Minnesota, Bruce Kramer was that kind of person. While social media glowed white hot with icy cold videos of the "ALS Bucket Challenge", Bruce was on year number four of his personal amyotrophic lateral sclerosis challenge: to work through the "dis ease" that the disease brought to his life.
Bruce died last Monday like most prophets do -- early. Either we kill them off to shut them up, or they suffocate under the weight of all the troubles borne on our behalf; or, as in Bruce's case, they die of the disease that gave them the prophet's vision.
As master communicator, accomplished musician, and dean of the College of Education, Leadership, and Counseling at St. Thomas University, Bruce skillfully chronicled his new life in a blog he called "Dis Ease Diary," a nod to the unsettling way that disease obliterates our illusion of control.
"Now, I am cured of planning," he wrote in his recently-released book, We Know How This Ends: Living While Dying. With help from Cathy Wurzer, a journalist at Minnesota Public Radio, Bruce adds to material from his blog to chronicle his life with ALS, and to bring us deftly to the thing we must hear but often cannot:
"Acknowledge disability or death, and suddenly you must acknowledge just how vulnerable the human condition really is."
As ridiculous as it sounds, We Know How This Ends is a hopeful book. And a serious, joyful, literate, nuanced, bracing and funny book, in part because Bruce could be all of those things, and in part because this is the vision that Bruce returned with from the wilderness.
"All of us carry dis ease," Bruce wrote. "All of us seek to ease the hurt. All of us have choices, and all of us have no choice. It is the knife edge of the present that each of us walks. It is the omnipresent question: Will we be strengthened by awareness of our dis eased life, or will the awareness overwhelm us?"
Bruce wrote this book for those who struggle, for the fearful, for the planners, for everyone living the bar-coded, conveyor belt life. Since we humans have a hard time seeing prophets for what they are while they're alive, roaming around in our midst, I have a feeling that now that he's passed, Bruce's "Dis Ease Diary" blog and this book will speak to people for a long, long time.
"To be open is to embrace your own great big messy humanity, to cry in sadness but not despair, to recognize presence in the emptiness of the bitter moment of truth, to be afraid but not fearful. 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."
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