“We thought we could cure everything, but it turns out that we can only cure a small amount of human suffering. The rest of it needs to be healed, and that’s different. I think science defines life in its own way, but life is larger than science. Life is filled with mystery, courage, heroism, and love — all these things that we can witness but not measure or even understand, but they make our lives valuable anyway.” Rachel Naomi Remen
For a long time I searched for the cure for my pain.
For the answers. For the fix. It is understandable. My life had been upended, my very self had been upended, by pain. Nothing made sense.
After years of failed treatments I dove headfirst into the science, searching for my answers there. What I found was not what I expected. It certainly wasn’t ‘the answer’, it was part of a much larger picture. The science was also challenging. I didn’t think it applied to me. It was all well and good but my pain was ‘real’. By real I meant it had to be some sort of damage, some sort of injury (either never healed or constantly recurring) in the structures where my pain was felt. My pain was in my hip, dammit.
It was difficult to come around to believing that pain didn’t mean damage, even though the pain was felt so distinctly and unwaveringly in my hip. It was hard to wrap my head around the fact that the biology of pain is about much more than anatomy and structure and biomechanics. It was also freeing once I did. It opened the door onto possibilities.
To healing, if not a cure.
The science also helped me to feel validated. My pain was very real. With very real scientific explanations. Just real in ways different than I had come to understand and believe. I came to understand that there’s a whole lot of factors that contribute to our experience of pain that are integrated and interrelated in complex ways that we cannot separate out.
I came to believe that we are complex beings, living in complex worlds and cultures. Worlds and cultures that we shape, and that also shape us, down to our very biology. I came to understand that our psychology is of our biology, too. What else could it be? It is not less real than our bones and joints. It is not a thought bubble floating above our heads. It is neurons and glia and neurotransmitters. It is made of the stuff that we are made of.
I also realized there’s a whole lot we don’t know, that there is a lot of uncertainty, and that is okay.
“I think that that was one of the purist encounters with mystery that I have ever had in my life. It makes me wonder about who we are, what’s possible for us, how this world really operates. I have no answers, but I have a lot of questions, and those questions have helped me to live better than any answers I might find.” Rachel Naomi Remen
Life is larger than science.
It is filled with mystery. If the mysteries were all solved, there’d be no more need of science. Life is also filled with courage and heroism and love. And sorrow and fear and suffering and sadness. These things are immeasurable. There is no randomized control trial that tells us what it is like to be human, let alone a human in pain, or a human who is suffering, or a human who has healed from that suffering.
The science helped me understand pain differently, and that opened the door for me to understand myself with pain differently. To understand being human I needed stories.
When I was in the darkness, in the abyss, in the chaos of pain, it was hard to make sense of things. I was just trying to get through the next day, the next hour, the next moment, the next minute. From that place I was fighting for answers, fighting for care, for recognition, for guidance, for help, in an adversarial workers compensation system that investigated my moral integrity before it investigated my pain. I felt doubted and disbelieved and stigmatized and dismissed.
In that darkness I felt very alone. And feeling so alone, I withdrew from the world even more. I couldn’t put words to what I was experiencing. I didn’t know how to ask for help, or where to get the help I needed. I became disconnected from the world, from the people who mattered to me, from myself.
“I don’t think it’s what’s wrong with us. Sometimes what appears to be a catastrophe, over time, becomes a strong foundation from which to live a good life. It’s possible to live a good life even though it isn’t an easy life. And I think that’s one of the best-kept secrets…” Rachel Naomi Remen
I needed the science and the stories
The science was a spark of light in that darkness. It helped me to see there was a path forward. I couldn’t see much of it, just enough to take a first step. And then another. And then another. The path began to unfold, though it was still shrouded in mist. A fog of pain.
It was stories that helped to lift the fog, that helped me to see the path a bit more clearly. That helped me see there wasn’t just one path, but many.
Writers and poets and musicians and artists have been telling the truth of the human experience for centuries. Those truths helped me see that I was not alone in my pain, not alone in my suffering, my confusion, my chaos.
Charles Dickens, Joyce Carroll Oates, Leo Tolstoy, Charlotte Bronte, Stephen King and so many more helped me to navigate the pained landscape I had found myself within. Stories helped me to see I was connected to our common humanity. To see that suffering was not mine to bear alone. Stories helped me to put my own suffering, my own pain, into perspective.
“And so perhaps this is about our wounds. The fact is that life is full of losses and disappointments, and the art of living is to make of them something that can nourish others.” Rachel Naomi Remen
Pain and loss and anger. And moving forward.
I had lost so much to this particular pain. This pain in my hip. A career, my financial security, my fire family, my future. I lost myself. I was no longer fun, no longer funny, no longer strong and fit, no longer a badass who fought fires and saved lives. No longer the same wife and daughter, no longer the same sister and friend. No longer the person I used to be, the person I felt I ought to be. The person I deserved to be.
And I focused on those losses and the unfairness of it all for a long time. I was angry. I was frustrated. I was afraid. I was ashamed. I was alone. (There is a beautiful exchange between Dr. Remen and Krista Tippett in the interview that highlights her own anger at having Crohn’s, anger she estimates lasted a decade. Another wonderful thing about hearing other people’s stories is seeing your own reflection.)
The science and the stories helped me to see things in a different light. A light that shined on our common humanity. On our ability to heal, and our ability to heal one another. A light that brought to the fore what I did have, what I could do, what was possible. Who I could be, even with pain, with loss, with trauma, with grief, with suffering. I was not broken, only changed by these very human experiences.
Not broken, just wounded. Just human.
“Wholeness includes all of our wounds. It includes all of our vulnerabilities. It is our authentic self, and it doesn’t sit in judgment on our wounds or our vulnerabilities. It simply says, ‘This is the way we connect to one another.’ Often we connect through our wounds, through the wisdom we have gained, the growth that has happened to us. Because we have been wounded allows us to be of help to other people.” Rachel Naomi Remen
I am whole. And I have been wounded, and will be wounded again. It is in recognizing these wounds as a part of me, without judgement, without shame, without blame, without fear, without anger, that has allowed me to heal and continue to heal.
I am connected with you, with humanity, with the world. With something larger than myself.
I am strong. I. Am. Strong. In all of my vulnerabilities.
Thank you all for listening. In the interview, Rachel Naomi Remen also spoke of some of the training she does with medical professionals around loss. During the exercises their only instruction is to listen generously. How simple and how difficult and how beautiful.
I want to thank my dear friend Amy Thompson for sharing this interview with me.
If this speaks to you, I encourage you to listen the interview or read the transcript as there is so much goodness in there that I have not done justice to. While you’re at it, read Keith Waldron’s letter, too. He writes of the difference of helping and being of service through the lens of Rachel Naomi Remen’s essay, In the Service of Life.