Review: Blogging Death, and Searching for Meaning in a Painful Decline

Businessman in wheelchair using digital tablet in office
Businessman in wheelchair using digital tablet in office

The following review first appeared in The National Book Review

We Know How This Ends: Living While Dying

By Bruce Kramer with Cathy Wurzer

Univ. of Minnesota Press 208 pp. $22.95

By Jim Swearingen

When Bruce Kramer, a Minnesota professor of education, was diagnosed with Amyotrophic Lateral Sclerosis (ALS) - or Lou Gehrig's disease - in 2010, his world exploded. He knew what the diagnosis meant: progressive bodily atrophy, from a disease whose causes are little understood and that has no known cure.

Kramer began writing a blog to capture the agony of his physical deterioration and his struggle to hold onto the splintered pieces of his life. He described his disease as "death by a thousand paper cuts," and it was an apt image: ALS was making changes that, day by day, could be all but imperceptible - but the overall effect of these small setbacks would be cataclysmic. At the same time, there was something that posed an even more immediate threat: unchecked anger and resentment, which could poison the time he had left to relish his life and loves.

Kramer's reflections on his journey have been collected in We Know How This Ends: Living While Dying, which describes his at times mystical pursuit of happiness in the face of disability and death. Kramer collaborated on the book with Cathy Wurzer, host of Morning Edition on Minnesota Public Radio. They finished the collaboration, which draws heavily from his blog -- The Dis Ease Diary -- and from four years of their radio conversations, before Kramer finally succumbed to ALS this past spring. (He did know how it would end.)

Kramer brought to his narrative an unusual array of intellectual abilities and life experiences. He was Dean of the College of Education, Leadership, and Counseling at the University of St. Thomas in Minneapolis, a student of ethics, a writer, a choral director, a gourmand, an avid biker, and a music fanatic. Kramer also brought extraordinary powers of observation and humanity - something I witnessed firsthand, since he was also my professor.

Kramer's foe in this story was a particularly diabolical one. ALS is a degenerative neurological disease affecting the motor neurons in the brain that control muscle movement. As the neurons atrophy and die, a person with ALS (PALS) progressively loses control of everything from walking to breathing. The first signs can be a relatively minor annoyance: in Kramer's case, the symptoms began with a floppy left foot. They ended with him requiring an assistive breathing apparatus.

In addition to exhibiting impressive pluck in the face of oblivion, Kramer is a powerful writer with a gift for crafting fresh descriptions, situations and emotions that are often reduced to clichés. He provides anyone with a terminal disease, and anyone caring for someone with one, with an eloquent guidebook on how to cope with eventual loss and embrace the days that are left. Unlike many of us, Kramer knew when death was near, and he used that time on a quest to accept his terminal condition and understand how physical debilitation can lead to spiritual enlightenment.

People who have observed battles against terminal illness up close have noticed a common silver lining: the unusually close personal bonds of friendship that often form. So it was with Kramer and Wurzer. With each successive physical impairment that beset Kramer, anger, bitterness, and despair nipped at his heels. Wurzer listened patiently and sympathetically as he fought them all off.

Wurzer was not only a smart and insightful partner on Kramer's journey - she brought an empathy forged by challenges of her own. While his physical condition was steadily worsening, Wurzer was coping with her own father's battle with Alzheimer's and the disintegration of her 20-year marriage.

The book's structure cleverly incorporates the duality of Kramer and Wurzer's roles in the story. Wurzer provides short introductions to each chapter that offer the reader interwoven perspectives of patient and caregiver. There is a commonality to the two narrators' accounts: this is a story of kinship between two people who are suffering.

Reflecting the degenerative nature of ALS, Kramer's story is one of steady decline. As new physical limitations manifest themselves, Kramer revisits the famous Elizabeth Kubler-Ross stages of grief over and over. Losing the ability to bike leads to the five stages: denial, anger, bargaining, depression, and acceptance. Losing the ability to walk repeats the cycle.

In the title of his blog, and throughout his writing, Kramer reformulates the word "disease" into "dis ease," a state of uneasiness, of lacking abilities, of losing what was once easy. Dis ease forces him to sell his manual transmission Civic, to move his family out of their three-story Victorian house, to acquire a cane, then a walker, then a motorized wheelchair.

As dis ease takes his able-bodied privileges away one by one, Kramer struggles to turn his terminal condition into creative possibility. In the face of an excruciating existence, he embraces every moment left him to give back to others, whether in shared moments with his beloved wife and sons, in the writing of his Dis Ease Diary for an able-bodied audience, or in his participation in drug trials that could help other PALS down the road.

As significant as the choices Kramer makes are the ones he rejects. He refuses to shoot the works on a bucket list spree of fabulous once-in-a-lifetime experiences. He also rejects suicide as a means of avoiding the eventuality of complete paralysis and suffocation.

We feel his moral outrage at the suggestion that others like him should off themselves and decrease the surplus national expense of their medical treatment. If, he asserts, there is money enough for another erectile dysfunction tonic, there are resources enough for him and his PALS.

Kramer also develops a fuming intolerance for trivial pursuits, for "bullshit" and "drivel." Illness brings him the clarity to see workplace conflicts and egotistical acquisitiveness as feckless wastes of time.

He is constantly looking for chances to see clearly, to appreciate fully, to embrace completely all of the beauty and love that surround him--his wife, his baby granddaughter, his music collection, the first warm whiffs of spring in Minnesota.

And there, but for the grace of time, go you, or I. The last time I saw Bruce Kramer was in the skyways of downtown Minneapolis, an elevated habit trail of street crossings and shops that shield the locals from winter's sloppy snow and bitter wind. He was cruising in his 21st century chariot of a wheelchair and I asked him what the prognosis was. "Well, I'm dying, Jim. But, we all are. I'm just doing it faster than you."

Kramer presents an alternative to spitting his last breath at Death. He concluded that ALS gave him not only debilitation and death, but also something positive. For Kramer, ALS provided a moment of timshel - the Biblical concept of "thou mayest," meaning that man is given the choice of how to act - to either embrace the tender blessings around him, or to squander them all in a wasteful indulgence of self-pity. He was reborn in ALS.

Kramer's story matters to all of us not only because we will all one day die, but because - as he reminded me that day in the skyway - we are all dying now. We know how this ends. No one gets out alive. The human condition is one of dis ease, and we will all be catastrophically worse off if we choose denial, anger, and bitterness as our response to death.

Our only logical choice is the one Thoreau made when he moved to Walden Pond: "to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived." That is the choice Kramer made so emphatically, and one that he exhorts all of us to make: to focus on the living, not the dying.

Jim Swearingen is a Minneapolis, Minnesota-based educator and a writer. The views expressed here are his own. Follow Jim on Twitter at @Jim_Swearingen