Above, with the neurologists in your future! Me with two DC area KP neurologists (all wearing our glasses!) Don't you love the new faces of medicine? I mourn the loss of my personal docs, all of whom have retired, but love, love, love the new wave!
About that standing ovation? It happened! Thank you?
I had the pleasure of speaking at the First Kaiser Permanente National Stroke Conference at the Hilton Anaheim. Thank you, Jonathan Artz, M.D. Neurology, Kaiser San Rafael!) Attended by almost 450 health care professionals, the three day conference brought clinicians from around the country to hear the state of the art Stroke Management.
My mission (otherwise known as the Continuing Medical Education or CME objective) was simple; At the end of the session, learners will be able to sympathize and empathize with stroke patients and their deficits.
Allotted time, 50 minutes. I decided to perform the second act of my show, the shortest, at 20 minutes, which highlights the Alice in Wonderland state of fresh cognitive impairment from stroke, then give an “inspirational talk”, and finally take questions.
And so I did.
Imagine my surprise when I was greeted with a standing ovation! I mean, yes, that happens in the theater, and after a day and a half of didactic talks mine might stand out, but …
When I started, I saw the usual percentage of attendees buried in their laptops and phones, doodling, reading the program for the afternoons offerings, etc, etc. But at a certain moment, all eyes were on me and I knew I had the room. YES! (Do I remember the moment? Nope. Not enough band width to record.)
Segue from performance to speech smooth. But as I began to wrap the speech, I could feel the electricity. Different from performing, because the communication form is different. And at the end, a standing ovation. One of those waves, that starts and builds. (There are many kinds of standing ovations! Weird, yes, but every actor knows the variations. Perhaps more on that another time.)
One colleague rushed to hug me said. “Not even Dean Ornish got that yesterday! A few people stood, but, wow!” (He was obviously the big , opening day draw.)
Wow indeed! And as I reflected, I realized that in my 33 years in medicine (yes, counting from day I started Yale Medical School), including meetings, conferences, command performances, I NEVER experienced or saw a standing ovation.
So why now?
I think it reflects the hunger for truth in medicine, for understanding, for having the disease entities we all study and know come to life in a personal way that reinforces the humanity of our patients, and of us.
The questions I was asked in the luncheon that followed only confirmed that supposition. Questions about my children (silly me, I end every performance sharing the answer to the most asked question: How are your children now? But falling back into the medical world, and also because I only did the middle part, before the impact on the children is fully revealed, it didn't occur to me to share that. And tellingly, in the formal Q and A, no one asked. But the first question off line at the luncheon that followed – from a woman of color – was "How are your babies now?") There were questions about how to find resources beyond the medical system for stroke survivors, what services are most important for rehab and well-being of stroke survivors, what advice to give stroke survivors, and what physicians dealing with stroke survivors and their families should ask or do.
I was excited and heartened by the earnest inquiries. Though sadly also heard the old maxim, (with the caveat, "I was taught") "The first year is the key to recovery; after that, you won't get better." A concept that has been totally debunked by current brain research
So, contrasting my reception with my medical school experience, I flashed on all the times in medical school where a patient was brought before us to illustrate a disease. There must have been many, but the two that are etched most deeply were an 600-800 lb thirty something white male and a 20 something white male with Lesch-Nyhan’s syndrome. (In medical school, the first sentence of any patient’s history is x year old, y (assumed) ethnicity, z (assumed) sex appearing younger or older than stated age. And after years of that training, I still find myself making the same assessments, despite the ubiquity of botox and fillers!)
What I remember is that within the 50 minute format, a (white male) professor (98% of tenured faculty) introduced the topic, said some words, then brought in the patient. The 800 lb man took a long time to enter and sit. Movement was clearly difficult and likely painful, but he did move on his own accord. The professor asked him to describe his daily dietary intake. What I remember still: his list included two entire grocery store rotisserie chickens, a loaf and a half of Wonderbread and jugs of Orange Sodas. His mother brought him the food, as he was physically unable to shop. And he described having no life, other than eating and thinking about his next meal. Then he left the room, and the professor made some closing remarks.
How could his mother enable him like that? I wondered. If he had to walk to the story to buy the food him self, he couldn't possibly eat that much. And how could his family afford to let him eat that way? My parents paid my Yale tuition (for which I am grateful), but required me to pay my living expenses, which I met through loans and work. That necessitated scrimping on food, of course, and many a day, I ate grits and hard boiled eggs for more than one meal. So I was astounded that a family could find the money to feed a man to his destruction.
But beyond details from his food diary, I had little insight into his life and condition, and little understanding of what his life was like. Partially, that was pre-stroke me. But the presentation was not designed to spark empathy or identification. It was clinical.
The Lesch-Nyhan’s syndrome patient was more heartbreaking. A rare, inherited enzyme deficiency that occurs almost exclusively in males results in overproduction of uric acid (same thing that causes gout) and neurologic and behavioral abnormalities, including abnormal involuntary muscle movements and self injury, notably biting and head banging. Most of those affected cannot walk, and our patient arrived in a wheel chair with restraints on all limbs. What I remember most are his incessant muscle spasms, and his relentless attempts to bite and gnaw at his arms. Watching someone trying desperately to eat himself is something from which even Game of Thrones devotees who enjoy the fights might turn from, and it was a horrifying sight. The professor spoke of him and of his desire to eat himself in his presence, but the patient never spoke.
So what I most remember is feeling they were exhibits. Feeling shame, I was embarrassed and self conscious for them, displayed in a manner that somehow deprived of their humanity. Perhaps my outsider status (mine was the first medical school class with more than a handful of women, first class with more than several people of color) made me more sensitive to that. (As they say, wherever you go, there you are.) But the presentations were clinical, devoid of empathy or emotion, just the facts, Ma’am. I could recognize and label the disease, but I didn't really connect with the humanity of either.
Perhaps that reflected the highly patriarchal and dominant culture nature of medical education in those days. (2 generations ago now; not sure how much the underlying power structure has changed.) Both make me think of Sara Baartman aka “Hottentot Venus,” and Ota Benga. (Worth Googling if you are not familiar with those references.) Both were black Africans, a South African Khoikhoi woman and a Congolese male Mbuti (pygmy), respectively, brought from their homelands and exhibited as curiosities, the former, in freak shows, the later, at a World’s Fair then at the Bronx Zoo around the turn of the 19th century!
My invitation to speak at the Kaiser Stroke Conference was an invitation to create sympathy and empathy, quite a seismic shift from my medical education days. And so my presentation broke the usual disease/patient exhibit presentation mold, or patient as an object of study. So likely plucked a string not often played. And the audience responded. Many spoke to the impact in heartfelt notes that filled my inbox the week after my performance. And I am told that many evaluation forms singled out my presentation as the highlight of the conference.
I am so grateful to have been given my story and the ability to share it. There is a special joy in reaching those in medicine, who are the first line in stroke care. And I am so grateful to Dr. Jonathan Artz, and The National Stroke Conference whose invitation underscored their belief in the value of empathy. It can be learned! Jill BolteTaylor, PhD, neurophysiologist, who, after suffering a devastating stroke, wrote the memoir My Stroke of Insight (though is more widely known for her Ted Talk of the same name), now teaches empathy at Harvard Medical School.
And clearly, medical education is changing. My invitational performance for George Washington Medical School (thank you, Dr. Julia Frank) 4th year students, and other medical school inquiries are a testament to that.
What I know: I feel called to continue performing this show. I have a first draft of next show and a barely off the ground manuscript of My Stroke of Luck, the memoir. I do plan to bring both to fruition.
But in the meantime….
Loving, loving, loving sharing My Stroke of Luck. Hope to see you in the theater!
The Tower Theater, Bend Oregon,
Benefit for Stroke Awareness Oregon,
Tuesday, April 30, 7:15 PM
The Marsh, Berkeley
2120 Allston Way (1 block from BART)
Opening May 2, Thursdays at 8 PM, Saturdays at 5 PM
Limited run, must close 6/1
And apologies, last week when I mentioned regional non profit Stroke groups, I neglected to mention two I have worked with, Stroke Recovery Association of British Columbia (Shaughnessy Stroke Recovery Branch) and The Aneurysm and AVM Foundation right here in SF. The latter has their 14th Annual Aneurysm and AVM Awareness Walk next Sunday morning May 5th, at Chrissy Field. After last week's newsletter, several people asked, "Just what award did you win?" Pictured below, Creating Connections Award, from the Schurig Center.
Though nothing in the below treat platter is on my nutritionist's plan for me (unless you count the 3 strawberries under the chocolate), this Kaiser welcome plate trumped all my good intentions. Ate just about everything! (Confess, left a few pearls, and couldn't get that chocolate swipe off without licking.) Didn't eat dinner, but not sure just because a few things looked like carrot shavings, this passes muster for a well balanced meal. Sigh.