When facing a cancer diagnosis, you quickly learn who shows up and who retreats. The impact of illness on relationships was one of the topics discussed with four cancer patients in the Center for Communication in Medicine’s video “Voices from the Lived World of Illness.” As producers of the video, psychologist Dr. Bernard Bandman and […]
Transcending All Knowledge
As readers of my blog already know, I am drawn to thinking about the space between uncertainty and hope. As we turn the calendar to a new year, I often find myself revisiting Stanzas Concerning an Ecstasy Experienced in High Contemplation by St. John of the Cross, which moves me to think about the mysteries […]
Your Sense of Self Has Changed
“Every day you wake up and your whole sense of self had changed whether you want it to or no. You have to think of yourself as different,” Adrienne Barnes, a patient with pancreatic cancer tells us.” Then, we hear Pete Johnson, who has been diagnosed with lung cancer, say, “There are times, even […]
What’s Said and Left Unsaid
In the video Voices From the Lived World of Illness, Adrienne Barnes tells us, “I thought I could go into the doctor’s office and hear what they said and understand it all and go back and report it to my 9,000 family members…but it’s become a really big joke because I am incapable of going […]
Can Writing Improve Health?
In 1998, when I launched Writing Is Good Medicine® at the cancer center in Bennington, VT, it was based upon social psychologist James Pennebaker’s research on the health benefits of expressive writing. His studies found that patients with chronic conditions who wrote about their illness experiences showed improvements in depression, anxiety, fatigue and tension, which […]
On Being A Patient Revisited
I often think of my dear friend Brian Gawlik who had been managing his illness for over a decade when we interviewed him in 2008 for our Speak Sooner newsletter (before I began writing a blog for the website). I continue to be inspired by his wise words.
When Illness Changes Our Future
I recently discovered an email from Dr. Zail Berry, a physician with expertise in internal medicine, palliative care and Hospice. Several years ago, we had asked her to review SpeakSooner: A Patient’s Guide to Difficult Conversations, a tool I developed to help patients identify questions and concerns. Dr. Berry’s comments were especially important because of how often our materials and programs to improve doctor-patient communication have only been associated with cancer care, not other serious illnesses.
In Illness…Words Give Out a Scent
“In illness…words give out their scent… at last we grasp the meaning, it is all having come to us sensually first, by way of the palate and the nostril…” Virginia Woolf, “On Being Ill” (1930) Taped to my telephone receiver is a message. Under ‘reason for call’, the word “Urgent” is checked. I […]
Don’t Make Trouble
So, how does someone find themselves creating the role of a medical humanist? I can tell you that there were signs a long time ago. As a little girl I’d often position myself to overhear conversations between adults, usually family and friends. I would repeat what I heard to my mother but she usually dismissed what I reported. She’d often say, “They didn’t say that. Don’t make trouble.” Somehow, I never gave up on naming “the elephant in the room” when I saw one. In my adult years I came to understand that my mother was trying to protect me from learning about the harsh realities of life.
No Man’s Land
I recall a patient’s husband recounting what his wife’s oncologist said when her cancer progressed and was no longer curable. The doctor told her to adjust her outlook “to living with cancer rather than dying from cancer.” At the time of that conversation, I was involved in his wife’s care in my role of medical humanist at the cancer center in Bennington, VT. Her husband told me that “I not only provided a bridge between the doctor and the patient but also between the patient’s present and future.” These were humbling words but I say them because of how difficult it is to live in “no man’s land.” What I did for this patient and her husband was document their concerns about the oncologist’s statement so it could be addressed at their next office visit. Words are words but the experience of hearing them can be something entirely different.