This past weekend I attended the first annual San Diego Pain Summit and I can’t even begin to put into a cohesive string of words all that I am thinking, nor can I come close to formulating into a single blog post all that I learned during the course of three days of thought-provoking presentations from a stellar line-up of speakers. On top of the speakers’ presentations, I had numerous insightful conversations with other attendees as well.  A diverse group of amiable, curious, smart, and insightful folks from all over the world (something like 13 professions were represented from 8 countries and most of the U.S.).

Nor can I begin to put into words all the directions that I want to go in with the information, the connections, and the ideas that were engendered at the conference! But I will start to try and put into words what the SD Pain Summit has got me thinking about, so you have an idea of what’s to come.

First, I signed up for the summit immediately after my interview of Lorimer Moseley (a neuroscientist from Australia) last year when I found out that he was to be the keynote speaker at a pain conference in San Diego. Lorimer, and the work of his research group BodyInMind.org, completely changed the way I thought about and managed my own pain issues, thereby completely changing my life.

Not only did Lorimer’s work change my life, he agreed to be interviewed (via Skype) by a grad student for a school paper – how cool is that? During our Skype chat he was gracious, funny, informative, attentive, insightful, and kind. He was even more so in person. He’s a joy to watch and to listen to; he’s a pioneer in the field of pain science, yet he is humble, he’s an accomplished researcher (something like 120+ academic papers and a number of books), yet he is ever curious – constantly observing, and being fascinated by, the human experience. In short, he’s just awesome.

When I interviewed Lorimer last year, we naturally talked about the complexity of chronic pain. But we talked more about how, even through the complexity, simple solutions can help us to successfully manage and even overcome pain.

I was fully on board with the successfully managing pain part last year. I felt I was evidence of such success, I’d come a long way at that time. It was after our last Colorado trip where I finally understood that I wasn’t fragile, breakable, or broken, that I wasn’t defined or controlled by my pain, that I was still a worthy, whole individual capable of living a happy, meaningful life, even if the pain was a constant companion.

And at that time, pain was still my constant companion. Though I was happy and healthy and doing much better than I had been in the years previously, I was still in pain a good deal of the time. But I was ok with that. I accepted the pain and decided to live my life with it, rather than battle it or wish it wasn’t there or long for the days before my injury (and surgery and persistent post-operative pain…).

I was going to be a successful manager of my pain, not an overcomer of my pain. And that was ok.

But a curious thing has happened in the year since that interview. Yes, I had my worst flare up in years at the end of last year, but even with the flare, my beliefs and my thoughts about my pain have changed once again. It snuck up on me somehow, but somewhere along the way I started thinking that I can actually overcome the pain, not just manage it successfully. I have hope that pain isn’t going to be my companion for life.

But I also don’t feel like it’s an all-or-nothing thing. I have the hope that I can overcome the pain, but I also don’t feel like it will be devastating if I don’t. I’m in a really good place right now, I believe, in part at least, because of that delicate balance between hope and realism that I have settled into.

I’ve now come to recognize that although I may have another horrible flare-up, or that I may have a bunch of smaller flare-blips, that they don’t have to be freakouts, they don’t have to derail my thoughts and beliefs and my hope, because they certainly don’t derail my progress (which I’m also just now beginning to realize).

I can still live a valued life, in the words of one the presenters, Eric Kruger. A meaningful life. A happy life.

And I think that’s the kicker, the big take-away. It’s about life, not about pain. About thriving, not merely surviving. .

So our focus needs to shift. Shift away from fixing the pain and toward living a valued life, even if there’s pain in it. When we’re sick or in pain or stressed or just in a bad place, we look at the sickness or the pain or the stress as a ‘thing’ separate from us, rather than as an integral part of us. A thing to be rid of as fast as possible.

But that stress, that pain, that illness is a part of us at that moment, and that’s ok. It’s a part of who we are; we shouldn’t be afraid to acknowledge it, to experience it, to express it. How else will we ever get beyond it? Learn from it? Grow from it?

But even though these things are a part of who we are, they’re just that. A part. They are not our totality. There’s a whole lot more to us than our pain or our stress or our illness. They are just a few lines of the narrative, not the whole story. They don’t define us.

So maybe it’s not just the stress, or the illness, or the pain that we need to ‘fix’ or focus on so much. No matter how much they seem to demand of our attention. It’s the whole story we need to focus on. The entire narrative of our valued life that we need to pay attention to, to write and to rewrite.

That’s the great thing, we are the story we tell ourselves, and we hold the pen, we write the narrative.

The things that make our story more interesting, more enjoyable, more meaningful – the people, the experiences, the creative endeavors, the music, the food, the magic, the moments, the books, the movies, the movements, the hobbies, the exploring, the discovering, the learning, the sharing, the playing, the crying, the caring, the giving, the images, the sunshine, the outdoors, the laughter, the art, the science, the love – those are the things that, if we focus on them just a bit more, if we make those things a bigger part of our narrative, then perhaps the pain, the stress, the illness will become a much smaller part of the story and play a much smaller role in the narrative of our lives.

And our stories are told down to the cellular level; we’re bioplastic, highly adaptable, incredibly resilient beings.  Our thoughts can change, our movement can change, our meanings can change, our behavior can change, our nervous systems can change, our autonomic systems can change, our immune systems can change, our endocrine systems can change…our outlook can change.

Our stories can change.

And we – we! each of us! no one has to do it for us! – can set some of these changes into motion. And any changes we set into motion in any one area will set changes into motion in all the other areas. That’s pretty awesome.

We humans, we’re interesting beings, ain’t we? We’re fascinating beings, complex beings, unique beings, creative beings, expressive beings, thinking beings, evolving beings. We can’t be boiled down to a label: our profession, our pain, our disease, our sport, our race, our ethnicity, our sexual orientation, our religion, our gender, our diet, our socioeconomic status, our treatment program, our alma mater, our successes, our failures.

Humans are complex, as such, pain is complex. As Patrick Wall said, pain is never bereft of context and emotion. Yet when we try to treat pain or manage pain, we continually ignore the context and avoid the emotion. It’s not comfortable. It’s not easy. But it is necessary.

We must pay attention to the totality of our story if we want to change the course of events. If we want a happy ending. We can’t just pay attention to bits about pain; we must get comfortable addressing the whole and stop trying to fix the broken parts.

Just as we can’t be boiled down to a label, chronic pain cannot be boiled down to a label, either. To one tissue, one diagnosis, one treatment, one doctor, one therapist, one coach, one tool, one strategy…one answer. Any one thing is not everything.

Rather than trying to pinpoint The One Thing that will fix us, maybe if we focus on the whole of us, on all of that which makes us us, we’ll find that we don’t need to be fixed.

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Thanks for reading my post, folks. There will be more to come about all of this, but I have some thinking to do.

I have been on a bit of a creativity bent of late, both in physical and mental pursuits, and this idea of the importance of creativity and self-expression was reinforced for me during this conference. Nature photography (the above photo was taken while I was in SD for the conference), reading, writing/storytelling, and exploring movement through play and fluidity (as opposed to mechanistic, prescribed movements) have been some of the creative pursuits that have dramatically improved my own pain management.

The power of language (y’all know how important language is to me), talking about pain, mindfulness, and being true to our authentic selves are biggies for me as well.

These are the themes that will all be running through my future posts.

I think ;)

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6 Responses to "Focusing on the whole of us, not just our pain: initial thoughts from the San Diego Pain Summit"

  1. Joletta, you’re so right. Living with chronic pain has not defined me, even after 30-something years of living with chronic spine disease. I’ve been a husband, father, businessman, engineer, writer, and active in my community. For most of my career, no one but my family and closest friends knew that I had a pain problem. I always felt that if colleagues and clients knew I was on COT, that my reputation would drop immediately due to the biases against pain treatment that are so prevalent in this country.

    Now, degenerative disease has finally caught up with me to the point where I can no longer pursue my career. This freedom from keeping a professional reputation has freed me to follow a new role in writing about pain, helping others find the right kind of treatment, supporting the “good-guys” who work each day to treat those who suffer, and for advocating compassionate research to help future generations of people like us.

    I’m one of the fortunate ones because throughout my disease process, which began in my 20’s, I known compassionate practitioners who have had the courage to treat my pain with whatever means were necessary, including opiate analgesics. Without these medications, the quality of my family’s life would have been very different.

    A fellow pain warrior puts it like this: “chronic pain patients are exhausted physically, emotionally, and financially.” If you believe the Institute of Medicine’s 2011 Report, over 100 million Americans live with pain. It is safe to assume that a considerate percentage of that group live with intractable pain. Pain is America’s silent epidemic.

    Yet today, in America it seems we’re more concerned with developing pain medications resistant to abuse than medication more effective against pain. We have no idea how many thousands have lost their lifeline to medical treatment because of the harsh “one-strike and you’re out” rules that now are written into controlled substance agreements, and for the many in pain who are under 30, finding effective treatment is next to impossible. Any follower of the reddit.com/chronicpain forum will find a generation that is suffering and doesn’t know where to turn. Unfortunately, some chose suicide rather than deal with the severe pain that physicians refuse to treat because of societal biases against prescribing CII opioids.

    We all want to be whole people and enjoy “the pursuit of happiness,” but for the millions who suffer, it means first enjoying a medical environment where practitioners are no longer afraid of prosecution for treating pain, where the needs of the millions outweigh the self-destruction of a the thousands who choose to destroy their lives with our medication, and we need to get the “business” out of the medical business, so that people and not profits are the primary concerns in providing care.

    Thank you for your excellent piece. I agree with you completely, but I must insist that when we examine our own lives holistically, we must also consider the lives of our brothers and sisters who are struggling daily with pain in a dysfunctional system.

  2. Thank you for passionate, reasoned, and thorough comment, Kurt. I appreciate the work you do on the behalf of patients and feel fortunate that we have people like you out there advocating for those who often don’t have a voice.

    My hope for all pain patients is for them to realize they can lead a valued, meaningful life, even if they have pain. Our focus is so much on eradicating pain, rather than learning about what pain is (and isn’t) learning how to manage pain through multi-modal means so that such a valued, meaningful life can be lived.

    We have a long way to go to change the way chronic pain is viewed, from how we talk about chronic pain as a society to how we diagnose and treat chronic pain, to how we manage and, for some, overcome our pain.

    The conference that I wrote about in this post was geared toward clinicians, the people who are working with chronic pain patients every day but who often aren’t educated in pain science through their educational and licensing processes. We are well behind the UK and Australia when it comes to educating the medical profession about the current understanding of pain.

    As far as we know, this was the first summit of this kind in the US (they’ve had programs geared toward healthcare providers for 4 or 5 years in Australia), bringing an awareness of the current understanding of pain science through a biopsychosocial lens, rather than merely a tissue-based, traditionally bio-medical lens.

    One of the things that had been evident both in the research and the daily lives of people with chronic pain is that opioids are not very effective for many patients, especially in the long term, particularly those who have idiopathic pain or pain or pain that is not a symptom of a disease or condition – where pain is the diagnosis.

    So medications are not a one-size-fits-all solution. In our quest for the pill that will fix it, we are missing the larger picture of pain, of which medication is only one part of the picture. For some, like yourself, medication may have a much greater effect than for others, for whom it may have little effect or adverse effects. Some of that may have to do with other variables as well, such as your strong sense of self and the support and love around you. It’s the combination of many helpful factors that help to improve pain or make it possible to live, truly live, even when pain is present.

    I’m not saying medication is not important, it can absolutely be a part of a successful pain management plan, as it has been for you. But there are other modalities that also affect the biological aspects of pain that have equal or greater success levels than medications (and better outcomes than surgeries, as well) for many patients. Pan is incredibly complex, even with the advances in pain science in the past couple decades, it is not clearly understood. Therefore, the chance of finding a medicine to ‘fix’ pain is unlikely, so we need other strategies to do right now to live the best life we can, and help others live their best lives as well.

    And the biology is just one part. The psychological and sociological aspects of pain need to be addressed in concert with any biological treatments for true success. Fear, anxiety, sleeplessness, depression, movement avoidance, isolation, non-acceptance…there are a great many things that contribute significantly to pain. And the stigma or misunderstanding that comes with anything identified as psychosocial needs to be addressed as well, on a much larger, societal scale.

    Like you, I have been fortunate in my own pain journey with the people and knowledge that I have come across. My surgeon was incredible, when I still had pain after surgery, despite the surgery being a success from an anatomical standpoint, he never once made me feel that my pain wasn’t real. I was under financial strain, I was afraid of what the future held, I didn’t have management strategies, I didn’t have answers; I was exhausted in all aspects of my life, as your pain warrior friend so astutely pointed out.

    But much of my learning came from my education. I was fortunate enough to be able to go back to graduate school and earn my M.S., with a good deal of my research focused on pain research. Not many people are able (or would even want!) to do that. And I came across many practitioners, academics, researchers, and patients that further informed my understanding of pain, which greatly helped me to successfully manage my pain.

    During that time, I came across the work of the Body in Mind group and other researchers and clinicians who were approaching pain differently than our current medical system (very ineffectively) does. I learned pain did not equal damage for many folks in pain, which was huge for me because I felt like I was making things worse with every step, every move. Not being fearful allowed me to engage in life again. This summit brought a lot of those folks together and hopefully will lead to more discussions, more education, more awareness as the attendees talk with their colleagues, administrators, friends, and patients.

    There is a long way to go. A mass conceptual shift in how we think of and live with pain is necessary, not just at the individual level, at the societal level as well. I want no one left behind. I attend conferences, interact with practitioners and patient, and try to get the word out as much as possible in the hopes that I can be a part of the conceptual shift that will help turn the tide and change the system. So that we all can live a valued, meaningful life.

    Thank you again for your valuable comment. I greatly appreciate your time and your contributions.

  3. Joletta,

    I just love this. I have had years of chronic pain and a journey that sounds VERY much like yours. The way you express it, even your words and phrasing are like reading my own thoughts. Kind of crazy. :) Like you, the pain is dramatically better than in years past but I can have some flare ups. AND I have learned and continue to learn so much about myself through the process. In fact, I wouldn’t have the profession and passion for what I do if it were not for my experience with chronic pain. I am a yoga/pilates/movement instructor and often my work is with folks with chronic pain. I know that I am never just working with a physical symptom, but a whole person with a story. And because of my experience clients tell me often that they connect with me more than others they have seen for their pain that can’t relate. So, I have come to be grateful for my experience. What I learn I extend to others. Helping others in pain is a joy and gift for me.

    I am looking forward to reading through more of your blog since we seem to have so much in common.

    Thank you for sharing your journey!

    Here’s a little something I wrote about just this, about story, from my Facebook page….

    “If the point of life is the same as the point of a story, the point of life is character transformation.” ~ Donald Miller, A Million Miles in a Thousand Years (a great book comparing life to a story)

    As wholistic, integrated beings, our bodies are going along for the ride with the stories of our lives. I have witnessed this in clients and myself for years. Sometimes along the story I get stuck in a chapter or sentence, reading the same thing over and over, or not turning the page, not moving on in the story. Often my body remains stuck there too. A body and life that are meant to be dynamic, not static, may often get our attention in some way, as a signal to keep moving with the story. Whether it’s to resolve, to let go, to have courage… To enter the next chapter with full presence and trust.

    • Tami, thank you so much for taking the time to leave such a lovely and thoughtful comment. What a wonderful thing to wake up to this morning!

      I am happy that you can relate to my writing. It’s taken me a while to figure out how to express all this pain stuff, I’m still finding my voice and hoping that somehow I can use that voice to help others. As with you, I have learned so much by having to deal with chronic pain, it definitely makes you view the world a little bit differently. I feel like it sort of forced me to slow down and look around, to see and feel a bit differently. To cherish the small things a bit more and to not worry so much about things out of my control. To be true to myself, to love and be loved, to move and play and laugh and eat, to stop worrying about what others thought of me. To write! To finally start telling this story – not just my story and not just a story about pain – all of our stories, stories about LIFE.

      I love that you have viewed your pain positively, how it helped you to find your passion/profession and truly connect with your clients (and others, like me, who you come across in other areas of life and also feel connected to you and your story!). Pain never is just physical symptom, it always comes with a story, within the context of a life.

      The quote from your page is incredible, it is like my own thoughts, but expressed much more poetically. It’s kismet that you somehow came across my post, I think. We do often get stuck in our stories, we become stagnant and the only way out of it is to get moving again (literally and figuratively), to keep writing our story. “To enter the next chapter with full presence and trust” – just wonderful.

      I am so happy our paths have crossed. Thank you again for taking the time to share a part of your journey with me. I would love to like your Facebook page, if you don’t mind sharing it with me! (isn’t it weird how social media changes the way we communicate?)

    • I just sent you a friend request and liked your page – thanks for sending the info! I look forward to staying connected. Social media isn’t all bad, eh? Sometimes I want to quit it all together but then it redeems itself…

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