A Different Kind of Letting Go

048Should I press “publish”?

Should I release these words into cyberspace, from which I can never entirely reclaim them?

It’s not like sending letters one writes when very angry.  (Yes, I still write letters the old-fashioned way, including ones known in-house as “Level 4 Letters.”  You do not want to be on the receiving end of one of those.)

Once I have an idea, I write nearly every post with demonic speed, but the blog’s design enables me to revise minutiae in each post dozens of times both before and after posting.

Ordinarily I don’t hesitate to press the little sky blue “Publish” rectangle, no matter how searingly personal the post.  (My archives do contain several incomplete posts and a few oxymoronic “unposted posts”–although I suppose an unposted post isn’t a post at all, but more like a diary entry.)

Just one post gave me pause, for a few minutes.

The very same event, described from another participant’s vantage point, caused her to wait weeks before she pressed “publish” on her own blog entry.

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My husband had donated his body to the medical school he attended, and I had the uncommon opportunity to meet with the small group of first-year students whose donor he became.

The post I wrote that Sunday night was “A Divet and a Button,” referring to the first two things, in addition to his youth, I learned the medical students had noticed about my husband: the button-like protrusion of his implanted port, and the impression on his finger from where he had worn his wedding band.

I had no doubt I needed to write something about that afternoon in Boston, but I had to ask myself: is there anyone out there who really would want to read about the experience of meeting the medical students who worked with a loved one’s body–the only people who ever set eyes directly on the tumor that took his life?

The medical school had zealously guarded his privacy: he was known to the students only as “James.” No photographs were allowed in the laboratory as they did their work.

In Sarah Polley’s amazing documentary film, Stories We Tell, she poses questions to her real-life actor father—the father who raised her, that is—about the most fraught family memories, including his memories of the day her mother died of cancer.  “A very bad day,” seemed the only words he could summon.  All four of Polley’s siblings (whom I did not realize were her real siblings when I watched the movie), when asked the same question, could not speak at all.  Their baby sister was in front of them, holding a running camera, but in their eyes you could see them transported back in time to that day, reliving their mother’s story from their own widely varying perspectives.

Perhaps this is close to what Tim O’Brien meant in The Things They Carried, when a soldier character voiced to his secondary audience (the readers) his thoughts about the stories he told: “I want you to feel what I felt.  I want you to know why story-truth is truer sometimes than happening-truth.”

In the documentary, Polley’s father quoted Margaret Atwood: “When you are in the middle of a story it isn’t a story at all, but only a confusion; a dark roaring, a blindness, a wreckage of shattered glass and splintered wood . . . . It’s only afterwards that it becomes anything like a story at all.  When you are telling it . . . .”

Jim left me with his story–all of it, the splendor, grace, and wit, and the shattering shock and horror of its premature end–and I know he would have approved of whatever he could continue to teach, even if it could only come by way of me now, and through my own lens.  

That’s why I do Schwartz Rounds about his treatment and end-of-life care–although ordinarily I am careful to tell my audiences that Jim would be telling a different story about the same experiences were he the one standing in front of them.  It’s also why I felt compelled to let these young men and women know about the life he lived before his body arrived back where he started his medical life, to impart priceless technical medical knowledge to new students.

Earlier this month I spoke at the hospital where Jim was diagnosed. Afterwards, one of the physicians told me that in this way, Jim and I still make a formidable teaching team.

The melding of what I still can do and he no longer can also was crystallized by one of those medical students: “James gave us many gifts as our donor –  knowledge, appreciation for the human body, an ability to understand the many terms we hear in our courses. However, Jim’s wife filled in the empty spaces that the gross anatomy course left behind. I was able to comprehend the importance of compassion, empathy, and human experience. I was able to understand concepts that you can’t find in Netters Atlas of Anatomy. His wife gave us a copy of the pamphlet from his memorial. We saw pictures of Jim and learned about what he was like in life. We learned about his family, his children, his passions, his interests. . . . I am so thankful for the experience that Jim and his wife gave me. As a team, they introduced me to the most important foundations of medicine.”

I pressed the button on the post and felt a vague sense of relief in sharing the students’ stories and Jim’s.  Apparently people did want to read about the last gift Jim gave, in further service of a profession he loved.  “A Divet and a Button” remains the most-read post on this blog.

Drawing on Darkness

     

                     

                     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 Garptold 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. Continue reading “Drawing on Darkness”

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