Thursday, May 14, 2015

Bruce H. Kramer on finding a place of balance and harmony while living with the "dis ease" of ALS.

Bruce H. Kramer, who was diagnosed with ALS in 2010, speaks with
Cathy Wurzer about the power of reaching out in a still from this video.


Bruce H. Kramer, a former dean at the University of St. Thomas in St. Paul, Minnesota, was diagnosed with ALS (amyotrophic lateral sclerosis) in December 2010. Roughly four years and three months later, Kramer's journey with ALS ended and he passed away on March 23, 2015. During that period of time, Kramer documented his thoughts, musings, and experiences living with ALS in a blog, the Dis Ease Diary, that he started about three months into his diagnosis. Kramer also recorded an ongoing occasional series of honest and heartfelt segments about living with ALS with Minnesota Public Radio's Cathy Wurzer.

Wurzer and Kramer grew to develop a deep friendship through the course of their broadcast conversations. They also co-wrote a book, We Know How This Ends: Living while Dying, in which Kramer offers an unflinchingly honest account of his progression with the disease, and Wurzer frames his writing with observations of her own.

In this excerpt, Kramer reflects upon the persuasive power of photographs to knock one's consciousness into self-acceptance.

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Excerpt from the chapter "The Widening Gyre" from We Know How This Ends by Bruce H. Kramer with Cathy Wurzer.

Almost to the day that I turned fifty, I experienced a phenomenon that many of my older and wiser friends easily recognized. I would get up in the morning, look in the mirror, and wonder, Who is that old man staring back at me? Or I would be walking by a bank of windows, and I would catch a glimpse of myself and not recognize the person looking back. As I have continued to age, this experience has only continued to heighten. You might interpret my nonrecognition as narcissistic, and I guess I wouldn’t blame you if you did. Yet I believe something instructive exists in whether we fully recognize our physical selves. I had this experience recently when I downloaded pictures from a small trip we made to Chicago. There was one picture in particular that when it came up on the computer, made me stop and wonder if that was really me.

We spent our first day at Millennium Park. Chicago has a well-developed park system along the lake, but when Millennium Park was built, it was highly controversial due to its cost and location—a park on some of the most valuable land in downtown Chicago. Now, nearly ten years after its opening, it is a place of energy and fun and wonderful amenities enjoyed by thousands of people every day, even in the winter. We spent almost two hours listening to the Grant Park Orchestra rehearsing an upcoming performance of the Shostakovich Fifth Symphony, enjoying the bizarre sculptures, and of course, no visit is complete without hanging around the great fountain that projects pictures of faces between its two monoliths—children and adults splashing in its puddles and standing under its bubbling waters. The whole park is meant to be interactive.

That day—lovely and sunny and cool for July—invited us to linger in the park, enjoying its beauty, recording the occasion with lots of pictures. Toward the entrance of the park, we stopped for a picture: Evelyn bending down to be at my height, me in the wheelchair, crooked, Buddha-bellied, hands tired from steering. I describe this in such terms because for the first time in a long time, I was surprised at my lack of recognition that it was me in the picture. Something about the picture projected what I think of as ALS posture—a picture that my subconscious has always seen in others but not in myself. It broke through my denial, spilling waves of cognitive dissonance between the body I have, the person I am, and the way I see myself. Suddenly, I saw myself with others’ eyes, and all of those old feelings about disability and deniability came rushing back as if I realized my disabled condition for the first time all over again.

I guess I really am a TAB (temporarily able-bodied person) at heart. I just can’t help it.

It was the circling gyre all over again—a point on the path of dis ease that I thought I had put behind me—only to spiral around to a deeper (or perhaps more superficial) interpretation of that same event. I thought that I had reached some semblance of acceptance—where this physical body is what it is, and my own self-worth is not a by-product of physical capacity’s superficial interpretation. You can imagine how surprised I was, not just by the picture but by my own over-the-top reaction of shock and denial.

Usually I have my head around these things, and I am able to live within my disability with a pretty healthy attitude, but seeing that picture put me right back into the denial I had experienced when my ALS first began. And associated with such denial is an unhealthy self-esteem tied up in physical projection. I questioned whether I deserved the love and attention of my family and my friends, because, after all, I was not whole, I was not well, I was ALS personified—scoliosis, gut protruding, wheelchair bound, muscles deteriorating. Not a pretty sight.

All of this from one picture? Eventually, I was able to find balance, harmony—a place where I could accept that it is just my body, and the space that I occupy is far greater than the capability and capacity my body projects.

In working on this book, the revision of various blog entries from nearly four years ago requires close consideration of my narrative in dis ease—trolling through earlier postings, journals, and even pictures. And this has not been easy. Sitting inside any former blog entry is grief for some hidden reference, some thing I was able to do then but cannot do now. Inside every picture is an image of my old normal, even when I thought it was the new normal. Inside this book is grief for the teaching I can no longer do. Dis ease has taught me that looking to the past brings grief, and that has been my experience, exponentially multiplied as I circled back into the writing, the imagery, the progression, the old me.




Circling back is not for the faint of heart. Circling back is complex. It is hard to look at images from the past, frozen in their time, stripped of their context and feeling, and not judge them too harshly with the sharpened understanding of focused hindsight. I was doing the best I could at the time. You would do the same.

I now recognize that circling back is not really what I have been doing. Instead I have been spiraling down, deepening the experience so that what was once old normal confidence is now vulnerability, what was once an equal partnership riding on the roads must now be even more intimate in how we look out for each other. And in the ultimate spiral, as I flip through images of the effects of dis ease on my family and friends—and especially my one true love, Ev—I must spiral into understanding that my fears were both well founded and inadequate in anticipation of what was to come.


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Bruce H. Kramer (1956–2015) was former dean of the College of Education, Leadership, and Counseling at the University of St. Thomas in St. Paul, Minnesota. He was the creator of The Dis Ease Diary (http://diseasediary.wordpress.com), a popular blog about life with ALS, and coauthor of Leading Ethically in Schools and Other Organizations, a realistic look at leadership ethics.

The host of Minnesota Public Radio’s flagship news program Morning Edition, Cathy Wurzer has been broadcasting conversations with Bruce H. Kramer about his ALS experiences since 2011. She is also the cohost of Almanac on Twin Cities Public Television, the longest-running weekly public affairs program in the nation.

"Security and immortality are both superstitions; the best we can do is make an adventure of our lives. In this exquisite book, Bruce H. Kramer finds adventure in the most unlikely of places: the death sentence that is ALS. We Know How This Ends is a moving tale that teaches us more about living well than any self-help book ever can."
—Dan Buettner, New York Times bestselling author of The Blue Zones: Lessons for Living Longer from the People Who’ve Lived the Longest 


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