A Dis Eased Life

The following is a guest post by MPR News host Cathy Wurzer.



If you are young and
vital, it will seem odd to suggest that you are actually living with some kind
of dis ease but trust me, you are. If you are a bit older or have elderly
parents, then it is quite likely that there is some kind of physical disease
that has been served up alongside a heaping helping of dis ease.

Disease. Dis-ease.
Confused yet?

You'll note I
separated the "dis" from the "ease." The concept of dis
ease came to Dr. Bruce Kramer, my late friend and co-author of We Know How This Ends: Living while Dying
shortly after he was diagnosed with the deadly disease known as amyotrophic
lateral sclerosis, ALS, or Lou Gehrig's disease. He was
given the news that was to change his life on December 6, 2010. Bruce dryly
joked that the diagnosis should have been delivered the next day, December 7th,
to coincide with the anniversary of the bombing of Pearl Harbor in 1941,
because both events carried the weight of massive upheaval, destruction, and
death. My friend had a quirky sense of humor.

ALS is no joke. It
remains a medical mystery. Researchers haven’t been able to figure out why
neurons in the brain and spinal cord that communicate with the body's muscles
become disconnected. The muscles required to move arms and legs, to talk,
swallow, and breathe become completely paralyzed. Death usually occurs in two
to five years after diagnosis. There is no cure for ALS and, unlike other
diseases, there's not even a decent treatment for it.

In the weeks after
his diagnosis, Bruce, an intelligent and thoughtful man, a college dean and
educator, found journaling to be a safe haven to explore his raw feelings. He
expanded his writing to blogging in order to share his experiences with a wider
audience and that's when his blog, the Dis Ease Diary was
born. When I started interviewing Bruce for a series of recorded
conversations for Minnesota Public Radio News on
what it was like to live in the shadow of terminal illness, one of our first
conversations included mention of his blog. I thought it was the Disease Diary
but Bruce gently corrected me. "It is the DIS ease Diary. DIS ease.” I
gave a mental shrug, thinking it was just a little clever word play on his part
and tried to plow on, but Bruce wanted to talk about dis-ease.

 

Bruce Kramer
correctly observed that most of us want to lead lives that are as free of pain
and suffering as possible. We have an internal blueprint of what our lives are
supposed to be. We harbor hopes of health and happiness, sunshine and rainbows
that will last until we die at a ripe old age, preferably in our sleep.  A disease diagnosis, especially a terminal
diagnosis, erases that dream and ruptures the ease of our lives. ALS was the
bomb that blew up what Bruce always thought would be an easy ride into his
later years.

When talking with
friends, family, and colleagues about his ALS, Bruce quickly discovered that
dis ease is the tie that binds, and it often has nothing to do with the
physical illness. In our book, We Know How This Ends: Living while Dying, Bruce
writes that his friends and colleagues "had their own variations on my ALS
theme: ‘I have cancer.’ ‘I am sick with depression.’ ‘My husband doesn't love
me anymore.’ ‘The pain in my legs is unbearable.’ I realized their story lines
were awakenings, profound connections in the moment of shared revelation that
each of us carries uneasiness, often unacknowledged but always present."

Cathy Wurzer (MPR News)

Bruce Kramer (M. Ekern UST)

I recall asking Bruce one day, as I dealt with an especially difficult personal problem, if he felt that all of life was an exercise in dis ease management. He smiled a wry smile.



Bruce recognized that dis ease is a state of being. It is part of the human condition. Instead of working so hard to avoid or deny it, acknowledging and embracing dis ease may allow a little grace into our lives; solace in the knowledge that our burdens are shared by many. We are not alone in our dis ease, although it often feels that way. 

Maybe what we need to do is to find that holy balance between the fixable and the inevitable, and in that space find the peace so many of us spend our lives searching for.



Here is a link to the new MPR News podcast on Bruce Kramer’s life with ALS.