I used to think about what tattoo would be good to get in middle age. After reading Katy Butler’s book, I know. I want DNR, medical shorthand for “do not resuscitate,” in red Times New Roman, right over my heart.
I became alerted to Knocking on Heaven’s Door back in 2010 when Butler was featured on the cover of the New York Times Magazine. ”What Broke My Father’s Heart” eventually won the Science in Society award from the National Association of Science Writers. It wasn’t far into this story about how the needless installation of a pacemaker destroyed her father’s dignity, her mother’s health, and the end of her parents’ marriage that I realized with a jolt: oh! It’s Jeff and Val.
Jeffrey Butler was my colleague in the history department at Wesleyan University. He was South African, and taught that field in our department. Jeff retired the year before I, and two other newly-minted Ph.D.’s, arrived to take the history department by storm, but he was still a presence. He was a very large man who had lost an arm in World War II. This gave him a distinctive appearance and demeanor since one hand had to do the work of two. Picking up mail in the department office, or attending talks, Jeff always had a smile for me, always asked after my work and projected a general excitement about the teaching and writing of history. Jeff and Val were an elegant couple, exactly the kind of people who — by remaining a presence at a university to which they had devoted a great deal of their lives — passed down those elements of university demeanor that you can’t teach.
I don’t think it is wrong to describe them as, well, a really sexy couple too. And I mean that in all the nicest ways.
Then came the word one day that Jeff had had a stroke, a really bad one. I recall running into Val down town some time later, and realizing that she looked exhausted. Remembering what a terrible toll my father’s final illness had taken on my mother, and how isolating it had been, I asked if I could help out. Could I come sit with Jeff so she could get out, or go to the store? No, no she assured me with a bright smile. Everything was fine.
Katy’s article, a preview of Knocking on Heaven’s Door, was a rude reminder of what I must have known, which was that everything was not fine, not at all. Jeff’s stroke had been catastrophic, and as his capabilities deteriorated, Val shouldered the burden of his care. Jeff’s stroke, Katy Butler writes, “devastated two lives.” The day before a clot took up residence in her husband’s brain, Val was “a talented amateur artists and photographer, a woman of intimidating energy, and a spectacular home maker.” She hiked, cooked, read, had an active friendship network and a lively, vigorous relationship with her husband. “After the stroke,” Butler writes, “she cared for my father the way she’s cared for my brothers at three or four.”
Like many adult children, Butler became a frequent flyer, attending to one crisis after another as her father’s health deteriorated over a period of years. Had Jeff died, the family would have joined with their community in rituals of grief. “But,” as Butler writes, “there is no public ceremony to commemorate a stroke that blasts your brain utterly, and no common word to describe the ambiguous state of a wife who has lost her husband and become his nurse.”
What the book is really about, however, is a decision that seemed small at the time and that turned bad luck into catastrophe. Jeff, suffering numerous other indignities of speech, thought and comportment, was also in pain from a hernia. The surgeon refused to operate without Jeff having a pacemaker installed. Only later did Katy learn that there are temporary pacemakers that create the same safety net during routine surgery. But this pacemaker was permanent. It kept Jeff alive when the rest of his body was crumbling. And getting it turned off was something that no amount of arguing with cardiac surgeons could achieve.
I’ll let you read the rest of the story yourself. Needless to say, since I knew these people (Val died not long after Jeff finally succumbed to his multiple disabilities, her life shortened by caring for her husband), I wept off and on throughout the book. I also wept for my own parents. I wept for my mother who — similarly to Val — had had “In sickness and in health” inscribed on her own heart on the day of her marriage. I wept for my father, a doctor, who said after thirteen years of cancer treatments that enough was enough, and told us not to take him back to the hospital.
Butler would say that my father made this decision because he knew what happened at hospitals: hundreds of thousands of dollars spent in the final weeks of life for “treatments” that will never heal. This often means putting a dying person through senseless procedures and surgeries when they may only have days or weeks to live. People are kept alive against their wills, sometimes shocked back to life against explicit instructions and legal documents that they have signed. Butler recounts how her mother, after having been diagnosed with heart disease following Jeff’s death, had to fight to get the orange bracelet that would alert EMS workers not to revive her.
The book tells two other important stories. Critical illness exploits the cracks in our family relationships and revives old wounds. Wanting to help one’s parents is not the same as being able to do it without cost. Butler is unsparing about the criticisms her parents doled out to their children, the seams of anger that ran through the family, and the arguments that sent her rushing out the door and back to California in tears. It’s a good reminder: the elderly people you love as friends have a whole other life with their children. They are more complex than you know. I wrote Katy after the New York Times Magazine story to apologize for never having followed up with Val, and she kindly wrote back to say: it’s okay. She didn’t want your help. That’s who she was.
Which made me think that one reason I must have cared for Val is that she reminded me of my own mother.
But Butler also did excellent research about the structural reasons behind her father’s terrible death. Why, for example, does Medicare pay for procedures, but not the conversations that would help sick people and their families understand their consequences? (Answer: lobbyists, lobbyists, lobbyists.) Why do all kinds of prosthetic parts go into the elderly — pacemakers, shunts, hips, knees — that may not benefit them at all? (Answer: Medicare pays, regardless of whether the operation sends the patient into a nursing home permanently.) What are the chances a person over 80 will come out of anesthesia without cognitive impairment? (Answer: not so good) Why is home care so poorly organized and ill paid? (Answer: they have no lobbyists!) How is it you can sign all kinds of documents about your end of life wishes and have them disregarded entirely (Answer: lawsuits, otherwise known as “Cousin Jeff from Peoria,” who might swoop in and sue the hospital for killing someone he never knew.)
Read this book. Then go down and get DNR tattooed over your heart.