Every phrase and every sentence is an end and a beginning,
Every poem an epitaph. . . .
—T. S. Eliot, Little Gidding
When I began writing it had been exactly hundred days since my husband Jim was diagnosed.
After he was diagnosed with metastatic pancreatic cancer Randy Pausch pondered what to do for his three young children: “If I were a painter, I would have painted for them. If I were a musician, I would have composed music. But I am a lecturer. So I lectured.”[i]
Of course, I was not the patient. But any caregiver who also is a parent will think endlessly of those young hearts, and wonder how to help them.
What are my skills? I put together criminal cases and I write, and while the former had no evident application in this situation, a friend suggested very early on that I write.
But I simply could not start until the first hundred days had passed. I will never know how that season’s passage and distance may have colored what I wrote, and may color it now. My children have my husband’s tendency to observe meticulously, to prepare themselves and learn all they can before jumping in.
The season (summer) of my husband’s aggressive treatment became a time for me to observe and learn, although no number of seasons will allow me to process this profound change in our family.
What I write is not really a story about my husband’s death, although his last four days would prove extraordinary, and I cannot imagine ever will be duplicated for anyone else. It is a story about a lifelong caregiver and teacher who would not have thought of himself as being either of those things.
The experienced criminal defense lawyer will tell his or her client not “Tell me what happened,” but “Tell me your story.”
The prohibition is against knowingly putting on a witness stand a client he or she is aware will be lying under oath. Putting on a criminal defense case can be akin to what Tim O’Brien, in The Things They Carried, described of a foot soldier’s stories: “I want you to feel what I felt. I want you to know why story-truth is truer sometimes than happening-truth.”[ii]
But trying to tell a life story and a family story is not as simple as separating truth from fiction: so much is a matter of perception, of trying to grasp and recount what happened during that slipstream of time. Even the biological encoding of different types of memories can affect what the mind holds.
Jenny Fields–better known as Garp’s mother in The World According to Garp—told her son, “Everybody dies. I’m going to die too. So will you. The thing is, to have a life before we die. It can be a real adventure having a life.”
Jim had a real adventure having a life.
Dying at home, as he wanted, also proved to be far more of an adventure than anyone could have anticipated.
I started out thinking I was the caregiver. I learned that, just as the best teachers teach without their students knowing they are being taught; the best caregivers fill that role without others necessarily knowing how (or even that) they are being cared for.
I write about their father mainly for our children, to help give them more of an idea of the order of his magnitude of influence outside the family’s orbit. I also want to honor other people who were closest to Jim and remain closest to us as a family, however they were born into or fell into our lives.
These friends—both those who were born or adopted into our family and those who have grown to be part of it–have proved the essence of the life well-lived. Jim could not have had this life without them. As one of my children’s teachers wrote to us, love begets love. Jim earned those friendships, and they deserved his.
Expressions of friendship of every kind, and the unique gifts and talents of each friend, have helped and will continue to carry the rest of us. One friend knitted from hand-spun yarn a lattice of bright red hearts for me and an oat-colored scarf of Celtic love knots for Jim. She wrote six words and affixed them to her gift: “In times like these, I knit.”
Deprived of my own ordinary adversarial outlet as a prosecutor by the abrupt loss of my work in order to help care for my husband, I found myself doing what I could do in a time like this: I sewed, and I wrote. As I gathered my thoughts, I also went on something of a baby quilt bender, soothing my mind with images of newborns and echoes of our own children’s births. At Jim’s bedside and in a previously unfathomable sequence of waiting rooms, I sewed pieces of brightly-colored, patterned cotton into new designs which I hoped would be worn to threads by tiny fingers in the years to come. One of the first quilts went to our oncology nurse’s newborn daughter. She was upstairs delivering her healthy baby while we were downstairs at the same hospital in the radiation suite.
I wrote in pieces and phrases–not with my customary goal of building arguments and proving the elements of a case, but to preserve thoughts and memories I might not otherwise be able to impart to my children.
On yet more optimistic days, I hoped the same accounts might resonate with others, and that knowing more about the way Jim lived might comfort them as it has helped us.
Only after my husband’s memorial service, when the Reverend issued a challenge to those who had not known my husband well to “live their lives as though they knew this man,” did I begin fully to understand my impulse to tell my husband’s life story—not just the story of his illness and death. To truly tell his story is the way others still can know him, and share our good fortune in having had him with us for as many years as we did.
And in sharing some awful parts of the story, including how not to tell a patient his condition is terminal–the very painful subject of an upcoming blog entry–perhaps someone else will be less likely to be subjected to the same treatment.
My work is, by definition, adversarial. My challenge—and my self-imposed therapy—became to describe nearly every shade and tone in life but for the adversarial one.
In The Mind’s Eye, neurologist Oliver Sacks wrote of the paradox he has observed in his work and research: “if there is indeed a fundamental difference between experience and description, between direct and mediated knowledge of the world, how is it that language can be so powerful? Language, that most human invention, can enable what, in principle, should not be possible. It can allow all of us, even the congenitally blind, to see with another person’s eyes.”[iii]
In his introduction to The Paradise of Bombs, Scott Russell Sanders described his attempts to use words to capture the appearance of Halley’s Comet, which his young son was afraid he somehow would miss in the jumble of dizzying light far above his own eyes: “I could not see through his eyes, he could not see through mine, and all I had to offer were a few words to draw lines on the darkness. Since it was all I knew how to do, I kept murmuring, stringing words into sentences, sentences into galaxies and constellations.”
His son then said he thought he could indeed see what his father was describing: “But whether he saw the comet, or only my words sketched over the darkness, I do not know.”
With the immeasurable loss of my husband, my children’s father, this, too, is all I have to offer in an attempt “to draw lines on the darkness.”