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.
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.
Love in the Spaces 
Stephanie, having read this and the “one post” I’m not really sure how put into words the emotions those stories evoke. One thing I can say is that I admire your strength. Having finally met face to face, I can say it is a pleasure knowing you.
A great gift you have given to the future patients of those medical students.
My father was a math/science professor and my mother decided that he would absolutely have wanted students to continue to learn from him, if possible, so she donated his body and brain to study the affects of Alzheimer’s.
I read that post and just now this one. The fact that you shared that most personal information let me know, this woman is serious about her intentions on this blog and I am going to try to read every single one of them. Well, because I love you so much I would have read every precious real word you write anyway but perhaps not with so much enthusiasm. When I can’t read them right away I save them in my email for later when things are more quiet and sane. Writing a story and writing a song are almost identical according to the way you described it! Some songs come in dreams completely written and I have a hard time writing fast enough to keep up with the channeling, some come more slowly – oh – like 10 years, but always a kind of maddening chaotic feeling that leads to the completion? is it ever? with the job of ‘singing the thing’ patiently waiting with open jaws.
My English and my Polish as well are too poor to adequately express my feeling,Stephanie. Thank you for this post.
Steph – As always your posts are amazingly insightful. I always come away thinking. Jim would be very proud of you. Having gone through 2 rounds of the scary diagnosis, I can honestly say that having a doctor with the understanding and compassion makes a huge difference to the patient. Doctors with that go from being good doctors to great doctors. You are giving them that understanding by sharing your experiences as a family member. Honestly, I think that is invaluable. It makes the patient trust the doctor and allows the patient to feel as good as possible about decisions that have to be made. You know that the plan may not save you, but you know that you are working with someone who cares and is doing their best. It makes all the difference.
Thank you again for sharing your heart with us. It brings Jim back to me, and I miss him so much. We all do. Thanks.
I wanted to let you know I love the Margaret Atwood quote you posted. I find that in the midst of chaos I don’t really know what is transpiring, but it is in the afterword that I seem to get some sort of meaning. But it takes a really good author to explain that in better words.
I have nominated you for Sunshine Award. Congratulations.
http://flowersandbreezes.wordpress.com/
Thank you so much, sheenmeem, and thank you for reading.
Stephanie — this is incredibly insightful and poignant. I found the link to the mentioned post among your top posts … my father-in-law bequeathed his body to Vanderbilt where he taught for a number of years … it leads me to wonder if they hold a similar service, and the benefit it would provide to my husband and his family. Thank you for extending yourself with courage and grace to write the first, and follow-up with this one … for pressing the sky-blue publish button. Many blessings ~~
Thank you so much. When I first received a letter from the medical school I had no idea this was done and was very slightly hesitant to attend, but it was no question at all when I realized I’d have a chance to meet the students. In all the talks I’ve given at different hospitals about end-of-life care and compassion, I am always happy to have medical students and young physicians-in-training, who have been incredibly attentive to issues of compassionate care. The medical school in this case sent out invitations to all the donors’ families, and I believe it’s a fairly recent development for medical schools to have any kind of opportunity for donors’ families to get more of an understanding of how important such gifts are. I wanted to speak because I thought I’d be able to assure other families how well and sensitively the donors are treated, because we were married way back when my husband was a first-year medical student and I remember how important his donor was to my husband and his team.