This was such a fun interview. Talking with Joletta always feels like talking to a kindred spirit. One how has been through the fires of hell and keeps going back to help carry others out by sharing her own experience. It was a pleasure to talk with her and share her story. You can listen at the bottom of the page.
I am a writer, reader and thinker. I try to make sense of pain through science, stories, and my own personal experiences on my blog, MyCuppaJo.com. My pain story started when I was a firefighter paramedic. I wasn’t doing anything cool when I got hurt, I just missed the step getting off the fire engine and felt a twinge. That missed step, that hip twinge, led me onto a path of ongoing, worsening pain, years of failed treatments, and medical retirement from the career that had defined me. It was hard. There were years of darkness and despair, of chaos and hopelessness. Fortunately, I found my way forward through pain science and story. The science of pain, which I became exposed to in graduate school as I studied human movement, validated my experiences and gave me hope that things could change. Reconceptualizing what pain meant helped me to get back to the things that mattered to me, the people, places and experiences that gave me purpose and made my life meaningful. While the science helped me understand pain differently, reading literature helped me understand myself differently. Writers have long been trying to tell the truths of the human experience, and my truths were found on the pages of nineteenth century authors like Dickens and Dostoevsky as well as on the pages of Stephen King and Joyce Carol Oates.
Once I was able to start making sense of my experiences, I wanted to help others make sense of theirs. In 2016 I co-founded Endless Possibilities Initiative, a nonprofit organization, with my friend Beth Requist. Our mission is to empower people living with pain to live well. We provide experiential learning workshops and retreats for people living with pain as well as workshops and CME lectures for clinicians.
Tell me about who you were and how your pain started
Losing my career meant losing my identity, too. Prior to pain, if you’d asked me to describe myself I would have replied “I’m a firefighter.” To me that encapsulated all who I was. No longer being that felt like no longer being me. I was lost. Over time I became isolated and withdrawn, no longer engaging with the people, places, and experiences that mattered to me. I lost my friends, my financial security, my future. My whole world was turned upside down. At the time of my medical retirement I had been in pain for three years.
Once I retired, after having worked in a civilian position for my fire department for two years after my hip surgery, I returned to graduate school to earn my MSc in Human Movement. I chose pain science as my research focus and that changed everything. The science validated my experiences, it showed me that my pain was very real, with very real biological processes underlying it. It also showed me that pain was much more complex than I had understood it to be. In my years of worsening pain I thought that pain could only mean tissue damage, that something was wrong in my hip joint, where the pain was felt. Understanding pain as an emergent, lived, biopsychosocial experience helped me to see that there are many factors that contribute to pain, as well as many things we can do to change our experience.
What changed to help you move in a different direction?
Pain is not a damage meter, it is not a direct reflection of what is happening in the tissues. This one notion allowed me to get back to living. My life had been on hold for years as I searched for the procedure or person who could fix me so I could get back to the real me, my real life. It was in understanding that pain did not mean damage or weakness or fragility that I realized I didn’t have to wait for it to be gone to get back to the things that mattered to me. That I could live my life, and live it well, with pain.
How is life different than when you were at the height of your pain experience?
That understanding opened the door onto other possibilities. When I interviewed Lorimer Moseley in 2014, over four years after my pain had started and well into graduate school, I grilled him for 45 minutes about pain science. At the end I asked what the one thing he would want people in pain to know or do. His response was to love and be loved, and that really floored me. The ground beneath me shook a bit, and my perspective forever changed. For so long I’d been focused on being rid of pain in order to get back to living. All of my attention and resources had been devoted to pain at the expense of everything else, there was just no room for anything but pain. That shift allowed me to make space for pain so there could be room for the things that mattered to me. So that I could focus on loving and being loved. It was a monumental shift.
I consider myself recovered now. I am healed, if not cured. I still have pain, but not all the time now and it only rarely interferes with my life. I still flare-up now and then but those flare-ups no longer derail me. I know I will get through them. My life is no longer centered around pain, it no longer as all of my attention and resources. I don’t ignore it, I have a healthy respect for pain without fearing it. My life is filled with things that matter to me: my husband, my family and friends, nature, writing, reading, speaking to folks at conferences and workshops, volunteering, the meaningful work we do with people living with pain through our nonprofit, play, travel. I am incredibly grateful for the life I am living, and I would never have gotten here without the years of pain and suffering I endured. Pain shapes us, it forever alters us. For a long time that terrified me, but I see things differently now. Now I can embrace all of the experiences that have shaped me, the good and the bad, without the judgment and shame I carried for so long. I am just a messy human, as are we all.
What do you want others experiencing pain to know?
There is realistic hope for change, a path forward for all of us. There are endless possibilities no matter our pain, no matter our limitations. We are strong, capable, adaptable, and resilient. We are not alone, all is not lost.