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Craig Bowron Headshot

The 'Dis-Ease' of Disease: Who's Living Well?

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The real experts on dying are all deceased, but the rest of us -- "the quick" -- still struggle to understand it, our interest in the subject being generally proportional to our age and infirmity.

I've written for the Washington Post about difficult end-of-life issues in the frail elderly, but there are those whose mortal call comes much earlier in life. We've all heard stories from cancer survivors or cancer non-survivors about how the cancer made them more alive than ever, about how it brought their world out of black and white and into Technicolor, like Dorothy landing in Oz. To some, these stories seem impossible to believe, a rosy Hallmark backstory told perhaps to soften the tragedy. Maybe it's the medications talking, or as with Dorothy, maybe it's all a complicated and beautiful vision from a bonk on the head.

For Bruce Kramer, the Post-It note from the beyond came in 2010, and read, "While you were away from your desk, you developed ALS, Lou Gehrig's disease. Sorry, there are no survivors." As Kramer will admit, there's been nothing exceptional about his ALS (it's run a fairly typical course, leaving him progressively weaker), but Kramer is an exceptional person. He's a former dean of the College of Education, Leadership and Counseling at the University of St. Thomas, and a gifted writer and thinker. And so ever since ALS came and brought him to his great awakening, he's been writing and speaking about it in a way that few others can. That doesn't make his story more valid. It just makes it more vivid. It's a narrative that takes you places.

His eloquent blog, "Dis Ease Diary," and his regular interviews on Minnesota Public Radio chronicle his life with ALS, but they also delve into the dis-ease that all of us have with our own mortality, and perhaps with just plain living.

To that point, when Kramer and his adaptive yoga instructor Matthew Sanford (a paraplegic since age 13), held a recent dialogue session about the mind-body connection, they talked about the dis-ease that TABs ("Temporarily Able-Bodied" people) show toward the disabled. As Kramer and Sanford see it, pity is a self-help mechanism that healthy people use to distance themselves from embracing the diseased, and in turn, their own mortality.

"The bodies we have are all moving to the same place," Kramer told the audience. "Let's just honor that and move forward."

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