To love and be loved: My pain turning points (part 1?)

I'm often asked 'what helped with your pain'. Years ago I meant to write a series of posts sharing some notable moments, but life derailed those attempts. Here's another go!

I started this post over FIVE years ago. I began it around the eighth anniversary of stepping off the fire engine and feeling a twinge in my hip and the fifth year anniversary of my medical retirement from the fire service. I’ve often seen it there in my drafts, thinking it’s never the right time to get back to it. Today I clicked on it, and thought eh, why not?

When I read what I wrote years ago, I’m often taken aback. I’ll never forget what it was like to be in so much pain all the time. Those years forever changed my life, forever changed me. Yet I also don’t always remember those days, either. And I certainly don’t remember them in the same ways I did ten years ago, five years ago, last year. The story of old is continually rewritten as the story of new unfolds.

When I look back to about 2010-1014, it’s like a black hole in my life’s history. That period of my life is enshrouded in what Drew Leder called the malignant mist in his paper on the experiential paradoxes of pain. In the midst of that mist there’s a crackly, flashing neon ‘PAIN’ sign hovering in the air. Sometimes when I look back the crackle and flash of pain seems menacing, loud, frightening, all-consuming. Other times it seems muffled, muted, drowned. More insidious and more terrifying for it.

I was looking for a mist picture, and came across this one from our trip to Norway for Paincloud. Not malignant but apt nonetheless.

I’m not saying this metaphorically. When I look back, I see this mist and this sign in my mind’s eye. It’s there, real. I can hear it. I can’t feel it, but there is an echo of the feeling of it. It’s uncomfortable. It makes me a bit tense and twitchy.

When I existed within that malignant mist it was too painful to sit. I couldn’t sit on furniture or ride in a car without wanting to crawl out of my body. I didn't sit for years. I stood everywhere, awkwardly. Even the mere thought of having to be somewhere I had to sit brought tears to my eyes. I took the train to work so I could stand. When I was at home I stood in our kitchen or would lie flat on the ground. I had prism glasses so I could see the TV while my head was under our coffee table in the living room.

I know these things, I lived these things, but I don’t remember them in the same way I used to. When I look back, it’s hard to believe just how dark and dim and small my world was, when before it had been so large and full and filled with light. From the relative mistlessness I live in today, it’s hard to imagine that painful existence.

There were times when I never thought I’d navigate out of that malignant mist. Times I thought I would never get through losing so much. My career. My identity. My sense of self-worth, of purpose, of meaning. My friends, my financial security, my hobbies, my joy. Through losing so much hope.

But I did. And I’m often asked how. I often ask myself how.

There is no simple answer. There was no linear progress, no step-by-step path, no one ‘thing’. But there were a lot of things that added up along the way, that led me down the windy path to here and now.

Grief and Pain

I first started writing this post in early 2018. It was derailed by death. Someone we were close to died by suicide in February of that year, while I was at the San Diego Pain Summit. His death once again turned everything I knew about the world upside down, after I’d thought I’d figured some stuff out. The post no longer made sense to write, I needed some time to sit with grief first.

Then, just two months later, our dog Buster died while we were in Norway. I was in Oslo to present at Paincloud. (So…weird? interesting? I don’t know what it is…that these tragedies both struck while I was presenting at a pain conference). Buster was my best friend. My unwavering source of love, companionship, understanding, goofiness, compassion - all the things! - through the hardest years of my life. I’ll always remember his little warm body curled up next to me when I was lying flat on my back. And the biggest heart in that little (but very long) body.

I wrote about my grief and my pain, and our shared humanity, back then, never coming back to the drafts of my ‘turning points’ as I’d intended.

Life has a way of bringing us back to things, and reminding us of what is really important from time to time. This happened to me again this last month. Another death, an unexpected stroke that took someone who was larger than life, who was one of the good ones, from us much too soon. And just two weeks later, some scary moments regarding another loved one, thankfully with good outcomes and some meaningful time spent with family, but again reminded me of what really matters.

Which brings me to loving and being loved.

Look at this intrepid (and long!) fella…camping in California October 2017

But first, some context.

Way back in 2014, four years into my pain experience and a year into going to grad school to figure it out (side note I hope doesn’t need to be said: people with pain shouldn’t have to go to grad school to figure out their pain!), I came across the work of Lorimer Moseley. His theory of pain opened the door to a different way forward for me. Not least of all because I finally - after years of living with pain that didn’t make sense and didn’t get better - felt validated. My pain was real.

My. Pain. Was. Real.

My pain was not all in my head. I wasn't crazy. I wasn't weak of mind, or body, or character. I wasn't dysfunctional, unstable, a failure.

My experience finally started to make some sense. Understanding that I wasn't some damaged, broken, fragile, weak, mess of human being allowed me to start focusing on other things. Things that mattered. The people, places, and experiences I had long withdrawn from in my pain, protecting myself like a hurt animal in my small, dark den.

And for the first time in a long time I had realistic hope that things could change.

That was a revolutionary thought after years of failed treatments. After being told that I was permanent and stationary, a medicolegal decree that I was never going to get better.

I was not a pain problem to be solved. Not a 2 o'clock hip to be run through some exercises and sent home with homework. I was human. A human in pain. A human going through some life-upending, self-upending, distressing shit.

Shared humanity

I emailed Lorimer to request a Skype interview for a paper I had to write for school. I poured out my entire story out to him (of course I did - brevity is not my strong suit) and yet he read it, and still said yes, to my surprise and delight.

I had a million questions because while I felt I understood the science, I couldn’t seem to apply it to me. I had slowly crawled back to living some sort of life at that point, but pain was still the center of all my attention, the center of every decision I made, the center of my existence.

While it was an interview, what really happened was we just talked. Not even all about pain. And I was heard, gosh darnit. Really heard. We were sharing experiences, discussing ideas. I felt heard and understood and not at all judged for my pain or not being able to get myself out of it.

I wasn’t an idiot! I was seen as a person - maybe even an interesting person! - and not just a pain problem to be solved or trivialized or a ‘challenging patient’ to be dismissed or doubted.

He listened intently as I poured out my life story. He listened without interrupting. He listened without a goal of challenging or changing my way of thinking but rather with a goal of hearing and understanding what I was telling him.

And I listened, too. He was just a human (I mean that in the best possible way) who had lived through his own human experiences. Experiences that piqued his curiosity. He wasn't satisfied with what he learned in school, which did not reflect what he learned from his own life, and from the people with pain he met in the clinic.

Another pic of Buster cuz just look at this guy! Camping in Colorado, May 2017

Love and be loved

Toward the end of our chat I asked him what the one thing he would want people with pain to know or to do. His one big takeaway (seeking simple answers is an easy thing to fall back on!). He gave me a sciency answer first, with the caveat that he felt like he should, but followed it up with a more philosophical take. That take had a much greater impact on me. One I still think about all the time, all these years later.

He replied, 'to love and be loved'.

It’s not hyperbole to say it was a profound moment for me. A moment, just one moment, just a few words, that led to a seismic shift. For so long, I was so focused on being rid of the pain so I could get back to my 'real life', back to my 'real self'. My life had been on hold. I did not like the person I had become. I wanted to go back to the ‘before pain’ me bcause the pained person I’d become was definitely not me. I was a stranger to myself. (For more on this, read Pain as an assault on the self).

And I was ashamed. So ashamed. I felt unworthy. So unworthy.

What was I even? Who was I even?

I realized in that moment how unlovable I felt. How unloved and unloving. It’s hard to give love when you don’t feel worthy of love. It’s hard to accept love when you don’t feel worthy of love. In just a moment, just a few words, I wondered if maybe I was wrong about myself. I wondered if maybe, just maybe, I was still worthy of loving and being loved. Still worthy. Still valued. Still loving and lovable.

Does this really matter to pain research and care?

If you say no, what are you even doing here? But still want to articulate why I think it matters.

Love is often missing from our discussions about pain. It is missing from our approaches to pain treatment, pain research, pain education. In the pursuit of objectivity, we dehumanize not only patients, but clinicians and researchers, too. In treating the body in pain as an object, as a machine to be fixed, a puzzle to be solved, we’ve done harm to all of us.

We do not have all the answers. None of us do.

Our answers for how to make sense of pain, work through pain, recover from pain, live well with pain, will never be found in the science alone. The answers will never be found in RCTs or meta-analyses or clinical practice guidelines. Humans, and human experiences such as pain, will always transcend science. We do not need objective markers of pain to know that pain is real. We do not need to objectify and dehumanize patients - which dehumanizes all of us - in order to understand and treat them.

That seems obvious, eh? Yet so often that shared humanity is trained right out of folks who want to be doctors or therapists or health professionals. In the pursuit of objectivity, pain is taught in the abstract. An academic exercise or clinical puzzle to solve rather than something that is lived and affects the lives of real people.

Pain can affect any of us, or any of our loved, ones at any time. And when we experience ongoing pain too many of us go unsupported because we don’t check a biomedical box, because we don’t meet some objective criteria whereby we can become an object to be manipulated, injected, imaged, repaired, or otherwise fixed. And because we don’t make good objects, we are too often discarded, doubted, dismissed. At times even disparaged and demonized.

Is it any wonder we come to feel unworthy? Ashamed? Unloved and unlovable?

What if we started from a place of love? Of trust? Of just believing people when they say they’re in pain? Of learning from and with people with pain so we can better understand pain, ask better research questions, innovate better treatments, develop better health systems?

To love and be loved.

Another cool misty pic I took in Ouray, Colorado in April 2015