I promised a post on the major turning points in my pain experience at the beginning of the year. Then life, and death, happened and it was put on hold. Those posts (there are two, reflecting two major turning points) will come soon, but first I wanted to share why I’ve been away, for those who may be wondering.

It’s been a rough 2018 for me, to be honest. There has been a lot of grief, a lot of sadness, of feeling adrift, of not being able to make sense of things. Our first waves of grief happened with the death by suicide of someone we loved dearly. It’s so hard to make sense of unexpected death to begin with, and even harder when it’s the suicide of someone full of life, love and laughter.

Just over two months later our beloved dog, Buster, died unexpectedly. If you’ve read many of my blogs, you’ve probably read about Buster. If you follow my Instagram account, you’ve surely seen pictures of him.

My best little buddy…and best therapy

Buster was my best friend. He was also my best therapy during the worst years of my pain, a source of joy, gratitude, and love, of daily laughter and a reminder to play and be goofy. He was our little adventure hound, always down for a road trip or camping and rode in planes, trains and automobiles, in buses and backpacks. Buster loved treats, getting cozy under the blankets, and going for walks. He always played hard after dinner, and sometimes he’d put himself to bed at night.

He continually reminded me of the important things in life: sleep, play, food, love, joy, gratitude. Mostly love. He had a big heart, in every sense. It was his enlarged heart that lead to his death in the end.

Buster got me outside when my life was so small and dark and pained. He brought me back out into the light, into the world. He understood me when no one else did. I never had to explain myself, he just got it, got me. He loved me unconditionally, even when I didn’t feel very lovable, perhaps especially when I didn’t feel very lovable.

He gave me courage and hope, and a bit of bravado, when I most desperately needed it.

And now he’s gone.Buster

Buster, my best little buddy

Ahhhh…this being human business…

So it has been a tough start to 2018. When I’m sad, I’m often silent. The same is true when I’m in pain. I don’t feel I have much to say, instead turning inward, reflecting, remembering, trying to make sense of things. I withdraw from the world a bit, my capacity to engage with people, places, experiences limited.

My bucket was overflowing with grief, no room for anything else for a bit. (I use this same metaphor with pain. Greg Lehman uses a cup metaphor). Only this time, there was no little buddy to comfort me, to get me to go outside, to remind me to play and laugh and be grateful for the day, the next meal, a cozy bed. No little buddy as a spigot at the bottom of the bucket to help me free up some space for something other than grief and sadness and pain.

Pain hurts

This pain is not the same as my hip pain, but it hurts nonetheless. It is still loss, still an inability to make sense of things, still anger and sadness, regret and wondering ‘what if…’, still blame and searching for answers.

There have been so many parallels between my experience of grief and my experience of chronic pain. So much that reminds me that these human experiences, uniquely ours yet also shared, are not compartmentalized in separate silos of our existence.

Grief, pain, depression, anxiety…they do not have separate, dedicated circuits or isolated brain territories. It is not a question of absence or presence, black or white, it is an overlapping spectrum of human experience made up of infinite components. Where we land on that spectrum at any given time differs between us and within us.

Where I am today is not where I will be tomorrow or five months from now, or where I was yesterday or five months ago.

Which got me thinking…

It’s time to stop pathologizing human emotions and the human experience. When I was in pain I felt grief for all that I lost, but it was never addressed as such.

Rather than speak of the primary losses, the emphasis in healthcare is on secondary gains. As though we are somehow winning when we experience ongoing, relentless pain, ongoing, relentless suffering.

I felt anger and fear and frustration. I ruminated about the past and what was and what could no longer be, I worried about a future that appeared hopeless and bleak, dark and despairing.

I’d lost my career and with it my identity, my financial security, my friends, my fire family, my future. I’d lost my hobbies and sports, my ability to sit and to socialize. My relationships became strained. I lost my place in the world.

How would you feel?

Grief is an untethering as well. The world doesn’t make sense in the way it once did.

It took me a long time to come to terms with my pain experience. I had to come to new information, to a new understanding of the biology of pain in order to change what the pain in my hip meant. To know that it didn’t mean damage, destruction, unchangeability. To accept all that had happened, all that had changed, knowing that it didn’t mean accepting that as my future, too.

Learning about pain biology wasn’t the whole story, of course. Biology doesn’t tell us the truth of our human experiences, it can only tell us the biological correlates of our human experiences.

Our pain, our grief, is not found in any randomized controlled trial or textbook.

I needed the humanities, too. I had to come to a new understanding of myself with pain, my unique experience, through things like classic literature and Buddhist philosophy. That’s what helped me change what the pain in my life meant. That’s what helped me shift my perspective, come to new understandings and find my place in the world again. Find myself again.

That helped end my suffering, even if it didn’t end my pain.

Rest, Rest, Rest by Eugenie Lee

I needed the science and the stories.

We all do.

I do now, again, as I work through grief and making sense of things yet again. As I make sense of this very human experience, uniquely mine yet shared by all of us.

A side note (rant?) on biology…

In thinking about how our experiences are both ours alone and shared amongst all of us, I got to thinking about biology, too.

Biology is the study of life, and when we look at the field of biology it covers everything from unicellular organisms to the biosphere. Ecology is a branch of biology that studies the interactions between living organisms and the interactions of living organisms with their environment. It recognizes that everything is connected.

Yet when we think of humans, we rarely speak of biology in terms of interactions with other humans and the environment. It seems that people think of ‘social factors’ as something external to the organism.

That is an error in thinking that we need to overcome.

If we can recognize how introducing wolves back into Yellowstone changes the ecosystem, changes biology (including bringing back beavers and Aspens), why do we not think of humans in the same, social way?

Will we ever get past the mind/body divide?

As Edward Bullmore wrote in The Inflamed Mind, I blame Descartes.

We are so entrenched in the body as machine, mind as (what? soul in the pineal gland? immaterial? thought bubble? the voice of God?), it seems a monumental feat for anyone to see mind/body as one organism, to recognize that our minds are embodied and our bodies enminded. That we are a unified organism living in a world of other living organisms in complex, interdependent ecosystems.

Biology is not just anatomy! It is also not just neuroscience, or immunology, or endocrinology. It’s all of it, including our interactions with other organisms and our environment. And including our thoughts, beliefs, memories, learning, expectations, behaviors – the purview of psychology – which is all underpinned by biology (if you have an argument that it’s not, please share).

<end rant>

Paincloud presentation

Paincloud Convention (my life before pain on the screen)

The good amidst the grief

As with most things in life, the grief of this year has happened alongside good things, too.

I was at the San Diego Pain Summit when I learned of our loved one’s suicide. It was the night before I sat on the patient panel, a wonderful opportunity to share the lived experience perspective with the clinicians in attendance.

I don’t remember what I said but I hear the panel went over well.  My co-panelists Erin Jackson and Mark Renard are amazing humans, I am so grateful to have sat alongside and hear their stories.

The panel was moderated by one of my favorite people in the world, Alison Sim. Alison has a new book out, Pain Heroes: Stories of Hope and Recovery, that I am so honored to be a part of. We need more stories of hope and recovery out there.

Another conference, another death

Buster died the night before my presentation at the Paincloud Convention in Oslo, Norway. It was devastating to be away, to not be there for his last moments, to not get to say goodbye and tell him how much I loved him and what a good dog he was. Not just a good dog, the best dog.

Our best friend, our young man, our best little buddy.

John was with me in Oslo. We were at a dinner for the speakers the night before the conference started when we found out. His pain and grief matched my own. It was the saddest, most difficult night to bear of our life of nearly 18 years together.

I gave my talk the next day. I’d wanted to honor my little buddy, to the honor the people living with pain I was there to speak for, to honor my own pain, old and new.

I didn’t make it to the last slides on my recovery (I went over time – always too many words!). It was a measure of self-protection I think. Buster played a huge role in my recovery. He was sprinkled throughout those slides in pictures.

I don’t think I could have held it together.

Our shared humanity

That presentation was the most important I’ve ever given, I think. I was at my most vulnerable in every sense.

At the Montana Pain Conference just a couple weeks before Paincloud, where I led breakout sessions on the patient experience both days and co-presented with my dear friend Dr. Chris Caldwell on teaching pain science into the patient narrative, Chris and I had a conversation where he said that it’s in sharing our weaknesses, not our strengths, that helps people the most. That it’s in our shared humanity that we can relate to one another and make an impact.

BYOH

In Amy Thompson’s talk at that conference she spoke of clinicians bringing their humanity to the table, of how we all need to bring our humanity to the table.

Amy’s a DPT who recently earned her MSc in Community Health. Images from her thesis, The Beauty in Pain: Storytelling & The Chronic Pain Experience, lined the back wall of the ballroom where the conference was held. It brought tears to my eyes. The portraits of people living with pain alongside their stories, in their own words, was profound.

It all stuck with me. I tried to bring my humanity to the table at Paincloud, to show our shared humanity through the the images of artwork created by people living with pain on the screen behind me as I told my story.

It is so incredibly hard to explain the unexplainable, so I wanted to show it, too.

If Only, by Eugenie Lee

My deepest gratitude goes to Eugenie Lee, Soula Mantalvanos, and PainExhibit.org, who let me share their pain and their visual stories. If you are not familiar with their work, please visit their pages and learn from them. If you truly want to understand pain, learn from the people who have lived it.

Other ways of knowing

One of the things I stressed at Paincloud was that we need other ways of knowing when it comes to truly understanding pain. As Howard Brody wrote in My Story Is Broken; Can You Help Me Fix It?”, clinicians have a deeply rooted “need to know”and  patient’s have an equally deep “need to be known.”

Our words are not always sufficient to know and be known.

Sometimes it helps to borrow words from others to help us express ourselves. Literature, song lyrics, poetry, metaphor, story, have much to offer in this regard. They can help us make sense of the unsensible, explain the unexplainable. And when there are no words, when words are inadequate, there is art. As the saying goes, a picture speaks a thousand words.

The humanities are too often neglected or, worse, denigrated when it comes to understanding pain and helping people make sense of their experiences. We need to change that. We do not make sense of our experiences in the lab, we make sense of them in the world and with others.

(For an interesting intersection of science and art, read “Frida Kahlo: Portrait of Chronic Pain” in the journal Physical Therapy.) 

The world is messy. We are messy. We don’t come in neatly labeled boxes, we’re not readily categorized and filed away. Yet that’s how we try to conceptualize pain. It just doesn’t work that way.

We are not our brains. We are more than the sum of our parts.

Looking ahead

It is our shared humanity and our need for other ways of knowing that will inform my next two posts, which are reflections on two of the major turning points in my pain experience.

The first was a chat (an interview for grad school) with Lorimer Moseley, and his recommendation to me, and people living with chronic pain in general, to love and be loved.

The second was a chat (as a patient demo) with Peter O’Sullivan at the 2017 San Diego Pain Summit and his request of me to tell him my story.

These experiences shared a sense of being listened to, heard, and validated. I felt I was a human of worth and of equal standing, that my expertise about my pain was as valuable as their expertise about pain.

These are no small things. It is hard to convey the shame and unworthiness one often feels when living with pain for a long time. How devalued we can feel. For someone to take the time to listen, to talk with us rather than at us, reminds us we are worthy. It reminds us that we are human, not less than.

They brought their humanity to the table, and it made a profound difference in my life for which I’m eternally grateful.

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13 Responses to "Our shared humanity, grief, why I’ve been away, and some musings on pain, biology, life…"

  1. Great post! I am sorry for your losses this year. I hope you are doing well and admire your strength as always!

  2. So good! Thank you, thank you, thank you! Good to hear from you. I had mentioned in a Facebook posting a women by the name Amberly Largo…she has got some story. She is hoping to become a professional speaker, I don’t know if it would be worth it to reach out to her. I always enjoy listening to you! Sorry to hear about your losses in 2018.

  3. Welcome back Jo, sorry for your loss.

    Just a little defence of Descartes.
    At that time religion (the church) had a stranglehold on science. You could not research or publish anything that contradicts church teachings. The only way to move forward was to separate the body from the mind. Science studied the body whiles religion studied the mind. That and the belief in reductionism was what allowed us to greatly understand the workings of the body since that time. I doubt we’ll have made much progress if that wasn’t done.

    Yes Descartes was wrong, but it was necessary at the time. We now know better, we can’t continue to blame him for our continual separation of the mind from the body.

    Thanks Jo.

    • Hi Mensah,

      Thanks so much for the reply. Descartes was also a devout Catholic, so his own beliefs played into things as well, not just the societal context of the time. For him there was no question that there was a God. So I would say that it wasn’t necessary, it just was!

      Even back then, though, Descartes knew there was a problem dividing mind and body. He was still trying to figure out how the two were connected when he died.

      I agree that we can’t continue to blame him, it was more a tongue in cheek statement. The reason I included the soul being in the pineal gland and other references to Dedcartes was to show that it makes no sense for us to maintain mind/body dualism, and yet we do. People need to understand where their beliefs are coming from, including all of the context you provided here. Most folks don’t know the history of our current biomedical ways of thinking (body as machine, mind as something other than body but somehow connected) and I think it’s important to bring attention to it.

      Hence the blame Descartes statement (which I borrowed). It’s a poke to get people thinking (hopefully) within the context of my other statements on biology in the post. Not meant to be literal!

      Thanks so much for your comments. I always appreciate your thoughts and input.

  4. Pingback: Our shared humanity, grief, why I’ve been away, and some musings on pain, biology, life… – MyCuppaJo.com | Neil Wise Physio

  5. Thank you for sharing this, Joletta! It’s definitely not just biology, and we do need the science and the stories!

    Many clinicians and therapists are learning much from you and many other people who are in pain and are trying to make better sense of it. This is why we share and debate research and philosophy, listen, learning from other disciplines, and listen more.

    It’s a struggle for us to counter a lot outdated ideas that still permeates the public. We’re glad that you are voicing your experiences and emotions out for the world to hear.

    Thank you again.

    • What a wonderful message to receive, thank you so much Nick. I am so grateful to have so many clinicians, writers, fellow peeps in pain, who want to have these discussions and debates so we can all learn more and figure out better ways of moving forward. Thank you for being a part of all of that. We have much work to do, but I truly feel that things are changing!

  6. So good to have you back. I’ve missed you. Please keep writing for you, for us.

    Loss is an interesting and tumultuous process. It’s part of this process of living. For me, personally, this can be compared to the idea that rather than separating the mind and body we might see it as it is, an interdependent relationship. With living comes death. With joy comes sorrow. Loving my husband means I may suffer terribly at some point with loss if he is to die before me, or succumb to Alzheimer’s as his mother did. Bringing my child into the world, one of the absolute most joyous parts of my life and existence means I will suffer terribly at some point with our separation, which I hope is NEVER her leaving this world before I do. Continuing to choose to have a fur baby in my life means I will suffer the process of loss with that dearly beloved animal. OK, so some would say, “well, suffering is a choice, there are ways to work with that.” Yes, true. I’m not really arguing that, I’m just saying (mostly for myself as I continue to process a violent death in our family from 7 years ago and most recently the loss of all three of my dogs in 2017), that life and death are interdependent. Not what I want to accept. Oh well. As a kinesiologist, it’s much easier to simply accept that the mind and body are interdependent :). My muscles cannot move my bones as levers to make my body move through space unless my mind is part of the process…. yep, right down to the whole motor nerves moving muscles thing. Interdependence. Accepting that loss comes with living is a bit harder for me – well, actually, just living with the process is harder. Gotta go through it to get through it (whatever :) ).

    I’m rambling. Thinking out loud on the keyboard.

    Mostly, I want to give you a big cyber hug and tell you that I hear you. And that I agree that the complexity of the mind/body experience is vast and even though we can put the “science” around it (we know the science is there), it is BIGGER than that. Right?

    I was just reading about physical pain in the last text book of my second to last graduate class and there was discussion about how physical pain (but hey, can we actually separate or clarify the difference between physical, psychic, emotional????) is actually a process of the brain and nervous system – almost a preconceived process, the brain telling us to beware! It was fascinating to read this! Pain is real, but maybe the pain response is not actually what we think it is. When my wrist now hurts at times after breaking it in December 2017 and having surgery with lots of pins, it might be that the wrist is actually not “hurting” but warning me that the action I am taking could cause damage – DANGER, DANGER Will Robinson! I find this shit amazingly fascinating! To me, the wrist hurts! It does. But maybe it’s my brain creating a response prior to me doing something to damage my physical body further. A warning system.

    So, that’s AMAZING. And a real testament to the interdependence of mind/body.

    My biggest task, whether it is physical or emotional or whatever is to view it all as an interdependent relationship and not try to label it, categorize it, put it in the correct little apothecary drawer, draw boundaries around it. For me, especially as “right” or “wrong” or “weak” or “strong”. It’s just a process. And a shared process. I am not alone.

    OK, so that was way longer than I expected!

    Love you.

    • So good to hear from you Laurie. Thank you for your kind words and for sharing your thoughts, experiences and insights.

      Loss is interesting and tumultuous, and also a part of life. It hurts so much because there was so much love and joy, and I wouldn’t give up that love and joy to not have this loss.

      I don’t think we can separate emotional and physical pain. We never experience anything, including pain, bereft of context, thoughts, emotions, memories. It’s all always connected.

      It was studying pain science that helped me understand pain differently, that it was a multisystem protective response and not a measure of damage or injury. I tried to make sense of it all on the blog back in 2014 with this: http://www.mycuppajo.com/chronic-pain-doesnt-equal-injury/ and have continued to learn and understand more about pain over the years.

      Knowing that pain isn’t a measure of damage was what helped me move forward, to get back to living. That’s why we started the nonprofit, too, to help empower others with knowledge and strategies.

      All pain is real, and it hurts. It doesn’t mean there is always injury or damage, though. It’s more like threat detection and protection, and those threats can come from all areas of our lives and being.

      We humans, we’re complex!

      Thanks so much for connecting my friend. It was wonderful to hear from you! Love you.

  7. Pingback: Articles Of The Week July 14, 2018 « The Massage Therapist Development Centre

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