[0:25- 0:58]: This is my favorite picture of my mother I see a woman with light in her eyes and shining in her soul that can’t be contained or snuffed out and I see a man my father proud to be with her it’s tattered and taped and in its original non digital form it speaks to me and if and if you looked really closely you may see a young couple facing the fight of their lives.
[1:00-1:20]: When my parents found out my father had leukemia they quickly married and had two kids, my brother and myself. My favorite story about him is it for Halloween he went throw a white sheet over his head and call himself a white corpuscle when for those of you who may know is the white blood cell that causes leukemia.
[1:24-1:49]: And in the latter days of his illness his parents came to visit us. They drove their RV and parked it several blocks away, and they came in and they said ‘what’s for dinner?’ and my mom started cooking, and then they said ‘would you mind moving the car?’ and my father went moved the car, and then they said ‘would you mind bringing our luggage upstairs?’ and so my father brother luggage upstairs.
[1:50- 2:10]: And he came back down and he was pale and sweaty, and about to pass out. My mom ran upstairs and threw all their luggage out the window, and she came back down stairs screaming ‘you see your son is dying, just get out just get out!’
[2:14-2:37]: Thinking about what we do was suffering, we run. My home was a tough place to grow up in at times, and I threw myself into ballet as an escape or an, outlet depending on how you call it, depending on how you call it.
[2:38-3:23]: I went to performing arts high school and I surrounded myself with artists, and I found hope. And I also fall a lot, and anyone will tell you I’m the klutziest ballerina they ever met. I was embarrassed about it for a long time, and then I found out that George Balanchine a famous choreographer favored dancers who fell, because it meant they had passion. I appreciated that because then it made my fumbling more admirable, so I was really passionate about running from suffering.
[3:27-4:13]: We hide, we numb, we bury. As a bartender for a decade I helped people do this, and I later went into neurology cuz I was fascinated with human behavior. Maybe because of what I saw in my prior career, and in a lot of my training I lost neurons associated with compassion. Somewhere between bed four and bed five, the 18th and the 19th patient on a given day, and maybe neither of my neurons but my heart. How first patient died and nobody said anything to me about it and when nobody says anything about it it’s like it didn’t happen.
[4:17-4:59]: My suffering became invisible, and so I did what any normal person would do I became a taskmaster. I mean, I became so efficient at accomplishing tasks, and at the end of one of my rotations a resident, a junior came up to me and said ‘you know if I was going into battle Adrienne, I would want you as my general’ and I took it as a compliment and it like completely escaped me that we had just compared taking care of patients to war.
[5:03- 5:40]: I emerged with one of the first imaginary words I’m going to make up: a compassion-ectomy. We measure. So my patients with multiple sclerosis, or MS, come to see me and they say ‘I hate coming to see you, because I have to wait in that waiting room and I see other patients in wheelchairs and on gurnies. And I think to myself, why I’m not as bad off as they? And I should be grateful for where I am.’ Why? Why compare?
[5:45- 6:27]: I mean, does the patient need that proof to allow themselves the suffering? Do I need it as a doctor before I open my heart? It’s as though we need a suffer-ometer (another imaginary word)―some gauge that would measure the amount of suffering we’re seeing― and then titrate the amount of empathy and compassion we can dispense at any given time; and it helps if you can visibly see suffering, right? A cane or a limp or tears.
[6:30-7:00]: But that’s just it, right? I can’t see the suffering we’re all walking around with on any given day. I mean, how much empathy are you prepared to give to the physician who looks completely intact, versus if you found out he had just lost a patient? How much empathy are you prepared to give a patient who looks completely intact, versus if you knew they just got diagnosed with the second cancer in addition to their first?
[7:02-7:15]: How much empathy were you prepared to give me at the beginning of this talk, versus at the end? And much more importantly, on any given day how much are you willing to give yourself?
[7:18-7:59]: We label. So, in my training I met Mrs. Jones, she was coming to multiple sclerosis clinic because she had multiple symptoms that she believed equated with a diagnosis of MS. She wanted that label of that disease. And I spent a lot of time with her going through her symptoms, figuring out where they radiated, looking at her films and I decided she didn’t have MS I had decided her symptoms were a reflection of some pain she had endured over her life.
[8:00- 8:45]: And so I walked out. I told my neurology staff that, and they agreed and then we’re about to walk back in the room, and my heart is pounding thinking ‘how are we gonna tell this woman who wants this label of MS, that we’re not going to give it to her?’ And my staff sat down looked her right in the eye and said ‘you know Mrs. Jones, you’ve been right all this time you have a touch of MS’. Now for those of you who don’t know anything about MS, there is no such thing as a touch of MS.
[8:50- 9:47]: Huh??? What just happened there? I felt crazy. When I really thought about it, make no doubt, both people were struggling, right? The patient is struggling to have her symptoms and the impact on her life acknowledged and validated, and she thinks a label will do that. The doctor is struggling with how to give what in this case is bad news, and doesn’t know how. And so instead applies a label―a Mislabel―that he thinks will say ‘I see your suffering.’ I call this therapeutic mislabeling because what happened was she stood up and all of the tension drained right out of her and she said ‘thank you’.
[9:51- 10:40]: Our brains love labels. I mean it. It allows us to take information coming in, package it up, put a bow on it, and put it up on the shelf. Difficult patient. Arrogant doctor. Diabetic. Drug addict. Disabled. Depressed. It prevents us from digging any deeper, from being empathically curious, and it distances us from the suffering of Mrs. Jones. And I think somewhere along the way we forgot that it’s okay to suffer without a label attached.
[10:43- 11:15]: Emotions and feelings are at times so uncomfortable we try to move through them as quickly as possible. Someone starts to cry we say ‘don’t cry’. Someone says ‘I’m worried’ we say, ‘don’t worry’. And gosh forbid they don’t stop, right? Because then you have to take out your fixer-ator―and I know you know what I’m talking about―this thing that, this tool, that’s going to help you fix this emotion before it gets way too messy.
[11:18- 11:45]: But maybe what we should be doing, is just sitting in what I call the ‘bathtub of emotion’. Just sit there. Just be. Stop trying to scramble out of the tub. But sitting there is hard, and most of us including myself are just trying to survive.
[11:49- 12:25]: So before I became chief experience officer, I was tasked with leading a team that would build communication skills for practicing physicians. And a dear colleague came to me and said ‘you know Adrienne, I think we need to frame these skills in the context of a relationship’...Huh? What are you talking about? I mean I am way too busy checking my stupendous array of checkboxes, diagnosing according to guidelines and closing my charts on time.
[12:27- 13:10]: And she persisted that relationships in healthcare were therapeutic not just for patients, but for the doctor and the clinician. And of course she was right, annoyingly. Our patients are suffering in avoidable and unavoidable ways, and when you create an environment of safety an empathic curiosity, the stories of invisible suffering of our doctors came bubbling to the surface.
[13:11- 13:35]: We had an opportunity to heal each other in these moments by choosing intentional language that built meaning, and community, and relationships. So you’re probably asking yourself what I’m asking you to do other than wipe out in public and sit in bathtubs?
[13:37- 14:32]: And this is it. The next time a loved one stands in front of you, a patient, a colleague, a student; I’m wondering what would happen if you chose words that made them feel valued as a human, that formed the context for relationship? Words like ‘tell me more’, ‘I’m hearing you say...’, ‘I’m here with you’, ‘you seem sad’, ‘I wish...’, ‘I can’t imagine...’, not I can’t imagine, I actually can’t imagine... or authentic touch, or maybe nothing.
[14:35- 15:45]: Just be being seen is a universal need, and we can all achieve it by throwing out our suffer-ometers, grabbing your compassion, and your hearts, and choosing words that build the relationships we’re all hungry for. Being seen is healing, and in my own life, I have healed as a result of seeing and healing others― not completely, I mean, I’m working it out, and in the end this incredible power we have to make another human being feel seen and embraced with one word, one touch, it’s all we have and it’s absolutely all we need. Thank you.