Wow. Just wow. Another San Diego Pain Summit is in the books! The fifth SDPain and my fifth (I’m a lifer). I’m still trying to weave together all the beautiful threads present throughout the Summit, so this will be the first in a series of posts. It will be more impressions than details, with future posts delving into the talks in more depth. Throughout the series I hope to explore other themes as well.
That which the environment provides
Tim Beames did a brilliant job in his talk of tying together all the presentations that came before his. I’m going to do my best to do tie everything together in this and future posts!
During his talk, titled ‘my experience of my body is what I say it is’, he said it was almost like pain has agency over the person living with it. That really struck me. It rang true. I think my own healing came as a result of restoring agency, of taking agency back from pain.
He also talked about the role of affordance in healing, which means (to me at least, after I googled it) ‘that which the environment provides.’ I think it’s a beautiful lens through which the entire Pain Summit can be viewed.
The SD Pain Summit is one of the best environments around to explore such things, wouldn’t you agree?
What really stood out to me was an underlying theme of wholeness. It started with Antonio Damasio’s keynote on feelings. Feelings are images of our internal worlds, he told us. A reflection of our homeostatic balance, our imperative to not only live but thrive into the future.
This matters because what’s going on in our tissues directly effects what’s going on in our minds. And what’s going in our minds has a direct effect on what is going on in our tissues, as Tim talked about in his presentation. We are not a separate mind and body, mind and body are a continuity, in Damasio’s words. A wholeness, if you will. It’s all continuous.
We are not bio and psychosocial. It’s all biology.
Within the theme of wholeness there was also a common thread of bringing our humanity to the table, patients and clinicians alike. And threads of service and reflective practice. Of cultivating relationships and cultivating compassion. Of creating safety, in ourselves and for others. Of finding strength in vulnerability and hope in uncertainty. Of making space for stories
All of our stories
Even the stories that are difficult to hear. Even the stories that don’t fit into our own narratives or frameworks or world views. That don’t have the ending we may hope for. Stories like Kira’s, which she shared so courageously on the patient panel. Perhaps especially those sorts of stories. The stories that challenge us, that may make us feel uncomfortable, that we might not know how to respond to.
And I hope we all learned there is value in bearing witness. In believing and being with. For Keith Meldrum, also on this year’s patient panel, being told he was believed was a major turning point in his decades long pain experience. An experience where he had not felt believed or regarded or valued for more than twenty years. Being told he was believed open the door onto new possibilities.
To listen is to lean in softly, with a willingness to be changed by what we hear.Mark Nepo, shared by Sharna Prasad
Stories are powerful
Michael Falcon, a stellar human and Occupational Therapist from Oregon, and a damn good storyteller, had the audience enraptured in his quick five minutes on stage. He shared the work he does with teenagers through the lens of his personal story and it was incredible.
I love the summit for letting us share our stories. Stories are how we make sense of things, after all. How we make sense of our experiences and ourselves. How we make sense of others and our world. Personal stories and clinical stories. Scientific stories and cultural stories. Stories of pain and recovery, of darkness and light. Of uncertainty and humility, of change and hope.
Stories that cannot be boiled down to a scale of 1-10, as Katie Schopmeyer beautifully laid out in her talk. Stories that can change over time, and that change us. Stories that allow us to see possibilities and find different paths forward, and stories that acknowledge the suck and the difficulties of living with pain. That shed light on dark corners and help us ask better questions.
We need stories
The panelists, Kira, Keith, and Bronnie Lennox Thompson lent insights into the experience of pain through their stories. Insights we can never get from a randomized controlled trial or systematic review. Insights that let us see what pain is, how it affects us, how it spreads into every corner of our lives and turns our worlds upside down. There is no number, no test, no questionnaire, no model, no framework, that captures all of that.
The sciences alone cannot illuminate the entirety of human experience without the light that comes from the arts and humanities.Antonio Damasio, The Strange Order of Things
That’s why one of the highlights of the weekend for me was the ‘Storytelling Salon’ that Lissanthea Taylor, Julia Traylor, and Amy Thompson crafted. It was a lovely evening of sharing stories, close-reading, meaningful explorations, and spoken word. It was challenging, too. Uncomfortable at times. Uncertain. It was human, with all the messiness and nuance and layers that being human brings.
It was also there that Amy spoke of bringing our wholeness, our whole selves, to our encounters and relationships and care. It stuck with me.
The following day I had goosebumps when Keith Waldron, who wasn’t even at the narrative workshop, spoke of wholeness, too. His reading of his letter to Barret Dorko was courageous, vulnerable, beautiful. It was my favorite hour of the weekend. I listened with rapt attention. It reminded me of Chris Caldwell’s powerfully vulnerable presentation that ended last year’s Summit.
As Chris would say, courage begets courage.
In Keith’s letter he quoted from Rachel Naomi Remen’s essay ‘In the Service of Life‘ exploring the differences between helping, fixing, and service. I’ll leave it to you to read both the letter and the essay, but there is one quote I want to share.
Fixing and helping is the basis of curing, but not of healing. In 40 years of chronic illnessRachel Naomi Remen, In the Service of Life
I have been helped by many people and fixed by a great many others who did not recognize my
wholeness. All that fixing and helping left me wounded in some important and fundamental
ways. Only service heals.
“All that fixing and helping left me wounded in some important and fundamental ways. Only service heals.”
Man, does that last sentence just get me. It speaks to the very heart of me. It speaks to my own experiences. To my dark years. And to the light that illuminated my path forward.
Shelly Prosko spoke of how rushing in to fix us just reinforces that we are broken, thereby engaging our threat detection systems and protective responses. It can make us resistant to anything you have to say as we withdraw into our protective shells.
To counter that rush, Shelly spoke of therapeutic humility, a phrase I love. She put forth three questions to ask:
How can I best serve?
What can I learn?
What does this person need to succeed?
Maxi Miciak’s talk, Being Begets Doing, provided a framework of engagement for being of service and for bringing wholeness to the therapeutic encounter. She spoke of how we, all of us – patients and clinicians alike – are always assessing safety, danger, and life threat. Clinicians have their own baggage, too! Their own histories, biases, and hoped for futures. Their own stories.
If rushing into fix is threatening, being with, being of service, can provide safety, make space for stories, and inspire meaningful conversations that lead to collaborative change. How do we create such an environment? Maxi walked us through her concept of the Safe Therapeutic Container.
Am I present? Am I receptive? Am I genuine? Am I committed?
Within the theme of wholeness were also threads of it being okay to not have all the answers. There is realistic hope to be found in uncertainty. There is strength in vulnerability. There is therapeutic value in bringing your own humanity to the table (a phrase I’ve borrowed from Amy Thompson).
It’s that therapeutic humility Shelly talked about. A theme I would argue was shared amongst all of the presenters.
Tim, Keith, and Maxi all spoke explicitly about having a reflective practice, which I see as invaluable. Tim said he spent years asking his patients if he was doing what he thought he was doing, if they were going where they thought they were going.
There is no one model or framework that captures everything, after all. No algorithm to follow to make sense of complex human experiences occurring in complex humans within complex worlds.
And that’s okay! None of us have this figured out. Odds are none of us ever will. That can be incredibly freeing. We don’t have to figure it all out, as Keith spoke of so eloquently in his letter. There is so much we can do with what we do know. So much we can explore together. So much we can do just by being good humans. By being compassionate. By making space for stories. By being of service.
In order to be okay with that uncertainty, in order to create safety in ourselves and for others with all of our own baggage on board, we must also be compassionate. For others and for ourselves.
It was fascinating, if also intuitive, to learn from Shelly that people who receive compassionate care are better able to care for themselves. It seems a compassionate environment provides empowerment. We can better engage in self-care when we feel heard, validated, and cared for. When we feel worthy of care and love.
Self-compassion and self-kindness were a path forward out of the darkness for me. That path forward was made possible by my interview of Lorimer Moseley, keynote of the first San Diego Pain Summit. He responded to my question of what he would want people living with pain to know or do with ‘love and be loved.’ I was floored. I hadn’t felt worthy of love for quite some time at that point. It was in that moment that I questioned the veracity of those feelings for the first time.
Loving and being loved can be so damn hard when we’re in pain for a long time. When we might not like who we’ve become, let alone love ourselves. When we’re ashamed and hurt and angry. When we feel alone and hopeless. When we don’t feel deserving of love or care, least of all from ourselves.
Compassion for clinicians, too
Shelly talked about how it’s not only beneficial to give compassion, but also to be able to receive compassion, too. From ourselves and from others. And it’s so important to note that compassion is not only for people living with pain. Compassion, including for self, is beneficial, perhaps necessary, for clinicians, too.
If your compassion does not include yourself, it is incomplete.Jack Kornfield, from Shelly Prosko’s talk
This was visualized beautifully in Sharna Prasad’s Titanic Model and was echoed and emphasized in the talk on burnout by Mark Milligan and Sandy Hilton. All three presenters brought their wholeness to the table and showed the strength of vulnerability by sharing some of their personal stories. Stories are such a powerful and meaningful way to convey concepts and ideas, even when it comes to science and medical treatments for the resistant among you ;)
In their talk to end the 2019 SD Pain Summit, Mark and Sandy spoke of how clinicians must take care of themselves in order to prevent or recover from burnout. How else will they ever be able to care for others? As Sharna said, we cannot serve others when we are drowning ourselves.
Compassion for others. Compassion for self. Receiving compassion. They’re all important (thank you to Shelly for this bit). We’re all just humans, after all. We’re all on the same team despite our differing entrances, as Sandy said, quoting Bronnie Lennox Thompson.
Together we messy humans may just discover some better ways forward in all of this.
That which the environment provides
I gained a new appreciation for context over the course of the weekend. Our internal contexts such as our feelings as well as the contexts of our environments and the relational contexts in our encounters with others.
There’s safety and danger, safe containers and sinking ships. There’s meaning and metaphor and language. There are cultural stories, clinical stories, and the stories we tell ourselves. Stories about ourselves and about others, about our inner and outer worlds.
In Antonio Damasio’s book, The Strange Order of Things, he explores how our feelings, the images of our inner world, contribute to science, art, philosophy, culture. It’s all inextricably interrelated, and that is fascinating and astounding and all still a bit mysterious and wondrous, isn’t it?
Katie did a beautiful job of exploring the sociopolitical history of pain scales. How we got to where we are, with some ideas as to where to go next. We don’t think of the social factors that affect pain nearly enough, let alone the socioculturalpolitical influences that create our health systems and care policies. That influence our selections of treatments and inform what we value, what we study…what we learn about at conferences.
Mark Bishop’s talk spoke to the importance of context to the outcomes of treatment, no matter the treatment, from manual therapy to exercise, medication to surgery. And Karen Davis explored neuroethics (lots and lots to unpack there) and the brain in pain. Still so much to explore in future posts!
It was a beautiful and wonderful and thought-provoking pain summit. A weekend filled with lots of learning from the stellar presenters, as well as lots of hugs and fireside chats and meaningful conversations during breaks and at lunch with the amazing attendees.
There are so many incredible people willing to bring their wholeness to this very special weekend every year. I’m already looking forward to SD Pain 2020
More to come on 2019 in the near future first, though ;)
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