The Examined Life Conference, but on by the University of Iowa’s Carver College of Medicine, was the second medical conference I’d been to in three weeks (the first being a gender bias symposium at Rosalind Franklin University of Health Sciences) and it was AMAZING. It was a three-day affair but I wish it could’ve gone on for a week. The workshops, panels, and speakers touched on a wide range of humanities in medicine. There were discussions around narrative medicine in patient care, there were panels about publishing for clinician authors, there were readings from works by clinicians and patients (and people who are both!). I could write/speak for hours about this wonderful conference, but I’m going to try and be brief, pulling a sentiment or two from each of the events I went to.
“Writing Grief” was a discussion on palliative care from author Phil Dwyer, the writer of a nonfiction book about his experiences with palliative care with regards to several deaths in his social sphere. He also runs the blog Conversations on Dying. I had never heard the term palliative care and learned that it means the relief of pain and other symptoms of disease without necessarily worrying about the cure of the disease. The thing I heard at this discussion that I liked was the idea that so many of us are afraid to share our experiences, and in so doing, we suffer because we lack the space to express ourselves and be heard. That we feel we need to be “invited to tell”. That creating space for others to share can lead to this flood of response and healing and conversation like what Dwyer noticed with his blog.
Rita Charon – a professor at Columbia University’s College of Medicine – shared her thoughts on why we need narrative medicine. Why thought needs art. Why innovation needs creativity. She shared many paintings, one in particular stood out to me: “Bird’s Hell” by Max Beckmann.
Charon told the story of taking the students in her narrative medicine course to the Met and showing them this painting. One med student, staring at this image, related to her how he suddenly started to understand the plight of a suicidal patient he had observed.
Two neuroscience graduate students and their professor held a panel on science communication in the digital age. They talked about the challenges with all the pseudoscience and popsci out on the world today, accelerated by the internet. An audience member said a George Bernard Shaw quote that I really enjoy: “The single biggest problem with communication is the illusion that it has taken place.” The take away was the argumentation requires ALL THREE aspects of the rhetorical triangle – logos, pathos, and ethos – but that logos (logic) does not necessarily mean statistics, especially if the audience doesn’t understand statistics (so in fact statistics almost never work to prove a point and instead seem unreasonable to deniers). So we need to revise our view of logic when making an argument.
Aimee Burke Valeras gave an excellent talk on her disability (a rare form of muscular dystrophy) and the journey she went through growing up and then deciding to get pregnant against medical advice. One illuminating part of her talk was the discussion of identity disability (an aspect of identity I hadn’t really given much thought to). She talked about how her disability was just another part of her identity, as every aspect of our identities produces good and bad effects in our lives. She also talked about the conflicting experiences of health care professionals and patients. One of the anecdotes from her past was when she, as a twelve-year-old girl, was surrounded by nine doctors and told she couldn’t get pregnant because of her disease. The doctors thought they were being impressive and showing “hey look, we’ve got a huge team on your case because we care about you,” but to Valeras it was scary. In addition, she spoke of how when she chose to want to get pregnant, everyone just kept saying “no” instead of “we don’t know” because the truth is they didn’t know what would happen to her but they were (as doctors) trained to be afraid of uncertainty. I’m hoping she goes on to publish what she read for us, because it was wonderfully written.
I went to a reading from Bogi Takács and Rose Lemberg on disability and health in speculative literature. I arrived a little late, but I believe they both identified as being autistic. They read snippets of their work in various anthologies between discussing the current landscape of disability (particularly neuroatypical characters or portrayals) in fiction, the importance of labels in helping people find eachother and things as long as those labels are flexible, the desire to not be cured but to be accommodated, and the importance (and grey area) of having literature written in “own voices” (i.e. a plethora of fiction with characters with disability being written by people with disabilities). I would encourage people interested in speculative literature from diverse voices to check their work out. I particularly enjoyed Takács “Given Sufficient Desperation” from the anthology Defying Doomsday. They also compiled a Diverse Editors List. Check it out.
Jeanne Bereiter – an artist and physician who works and teaches in the narrative medicine realm in New Mexico – gave a workshop about writing about mental illness. She presented three writers: William Styron (Sophie’s Choice, Darkness Visible), Sylvia Plath (The Bell Jar, The Colossus and Other Poems), Anne Sexton (Live or Die), Jane Kenyon (Let Evening Come), and Kay Jamison (An Unquiet Mind). I was CAPTIVATED by the Anne Sexton poem: “Wanting To Die” which she played a clip of off Youtube. I guess Sexton was a 1950s housewife who got post-partum depression and was encourage to write poetry as therapy. So she wrote this beautifully dark poetry which became famous. Some participants found her poem sickening, how she delights and toys with the thought of suicide as if she were seducing the thought, but I didn’t see it this way. I guess I sort of likened her to Kurt Cobain in that she feels this way and there’s this huge darkness in her and this is the ways she examines it, by playing with it like a cat plays with a dead mouse or a ball of string. I thought her writing was not necessarily the way all people would want to deal with mental illness, but that it’s the way she does. I think the fact she ended up killing herself made some people think her modality failed, but I think perhaps if it weren’t for her work she would’ve committed suicide much earlier.
Bud Shaw – a pioneering liver transplant surgeon and author several books, including Last Night in the OR: A Transplant Surgeon’s Odyssey – gave a talk on life’s transitions. He spoke about how he had to let go of surgery because it just wasn’t a part of his identity anymore, and through that he got more into writing, which had always been a part of him. He talked about how the hardest part of leaving surgery was giving up control, how in the OR (operating room) he had control over everything but in the real world there is no control. I enjoyed his talk because it echoed what I’ve been thinking about: our identities are constantly shifting, or rather the rigid words we sometimes use to describe our identities (doctor, teacher) are bound to shift and that this is why we need to define ourselves in more flexible terms.
There was a panel on discomfort and uncertainty in medicine with several physician-authors (Anna Reisman, Doris Iarovici, Audrey Young, and Maggie Leffler). They spoke about how writing about experiences helped them process and accept the inevitable uncertainty in medicine, not jumping to conclusions but being present in situations. Leffler read us an amazingly hilarious horror story of her experience having an adverse reaction to anesthesia such that she was paralyzed but not unconscious post-surgery to remove her gall bladder. The panel was cool and inspired me to pick up Leffler’s fiction book The Secrets of Flight and Young’s nonfiction What Patients Taught Me: A Medical Student’s Journey.
“Creative Modalities to Marginalized Populations” was a workshop delivered by Josephine Ensign and it was one of the only truly “workshoppy” workshops I attended at the conference. We spent most of the time moving around or discussing and very little time listening to her speak. The bulk of the workshop was an exercise (inspired by a David Viñueles activity) in which we walked around a table with various postcards on it. We picked the one that grabbed us the most – a term called “punctum” coined by Roland Barthes – and then wrote a few words or a phrase about what catches us about the post card and also describes ourselves. I chose a ukiyoe by Hiroshige: “Asakusa Ricefield and Torinomachi Festival”.
I described the ukiyoe (and myself) as: “isolation and longing”. Then as a group we put the cards we picked into groups based on how they looked. Then we got together with the people in our postcard group and combined our phrases. I was grouped with a perinatal psychologist and it we had a very interesting discussion because he postcard described abundance and interconnectedness to her (practically the opposite of mine). We decided that this was because these are like opposite sides of the same coin; on any given day you can exist within . Overall the workshop was really rad and it even inspired me to buy Ensign’s book – Catching Homelessness – which I then read in a day (an unusual feat for someone who does not read much because I tend to read slowly and get distracted), so check out this book if you’re interested in a nurse’s account first serving a marginalized population of homeless people in Richmond, Virginia and then becoming homeless herself!
I started day three in a presentation on music healing in the community, by Nina Stoyan-Rosenzsweig out of the University of Florida. She traced the intersection of music through various cultures healing practices including how her institution has open mics, artists in residence who come in and sing to and with patients, and other initiatives that bring arts and medicine together. She echoed how music is a form of connection, across cultures and also across patients and doctors. One song she played for us which I enjoyed thoroughly was Mariam Makeba’s “Ihoyiya”.
Next was a presentation from an undergraduate student on her research into pain narratives in palliative care in Kerala, India. She partnered with an organization called Pallium India, which provides free palliative care to low-resource individuals. From what she described, the work they do is so significant, giving life back to individuals who felt lost because of the immense pain and disability they experienced.
The last presentation – and by far my favorite – was from Thor Ringler, a poet and writer working for the My Story, My Life project at the Madison, Wisconsin VA Hospital. He explained that the program exists to provide a personalized aspect to veteran healthcare. A volunteer goes and interviews a veterans for about an hour. There is no set script (similar to my identity podcast project), just “what do you want your care team at the VA to know about you?” Based on the interview, the interviewer writes a thousand-word first person narrative that they then share with the veteran again for approval before placing it in the vet’s chart. Because this is something I’m incredibly interested in (not just in healthcare but in everything, capturing and sharing people’s stories) I was incredibly engrossed for the hour-and-a-half discussion. Ringler read some pieces from the project. Here’s one from the VA’s Facebook page. He talked about how the pieces are useful to clinicians because it provides them a jumping off point to talk with their patients about certain things they discussed in the story. It also is helpful to veterans, who get to keep the story and share it with their friends and family members.
Overall the entire conference was amazing. I hope I get to attend in 2017 and I encourage those interested in healthcare and the humanities to put this event on their calendar!