“Tell me about your medical history.”
It’s the sensible question every new doctor and researcher we meet asks. It’s about this time in the appointment, specifically when I get to the 2018 surgery, that an eruption of lava flows from my eyes—so much so that I now ask Mark to narrate. Yet even hearing it in his voice, even typing this right now, my eyes are flooded with tears.
It’s completely reasonable to cry, in fact I enjoy it. I sometimes imagine water balloons filled with tears inside my chest, and each cry session squeezes the bags dry, lightening my load.
Yet this is different. It’s an emotion that sucker punches me in the chest, coming out of nowhere like a reckless driver on highway 101. I’m swerving and startled and stop breathing for a second until it passes.
Last week I joined a Desmoid Tumor patient networking event. In one of the 1:1s, I even started the conversation by saying “I’ve recently realized I’m holding trauma since my surgery” and then proceeded to lose my breath entirely, sucking for air and wheezing for 30 seconds.
I have taken these experiences as a sign. It’s clear to me that there is something unresolved here. That my body is telling my mind to stop and listen, shining a spotlight on the work to be done.
So we begin.
OK body, what do you have to tell me?
Searching for understanding, I reengaged with the beautiful book The Body Keeps the Score, in which Dr. Van der Kolk looks at how the brain, body, and mind store trauma.
“We have discovered that helping victims of trauma find the words to describe what has happened to them is profoundly meaningful, but usually not enough... for real change to take place, the body needs to learn that the danger has passed and to live in the reality of the present.”
But how does one do that when the trauma hasn’t passed? When the trauma is ever present in such daily rituals as wound care, fear of being bumped from behind, pills, and medical correspondence. Every day I am questioning if Ursula the tumor is growing, stable, or shrinking. For example, it currently feels like the open wound area has stabilized, but the other two areas are swelling and painful, suggesting possible progression. Am I in the past? In the present? Trying to predict the future?
Visualizing the event
When I first thought about if I had experienced Trauma, with a capital “T” (as defined by medical professionals), I felt I was overreacting to my experience. Yes, it’s hard. But traumatic? I have a loving partner, a supportive family & community, a grounding home, a nurturing career. But understanding more about how trauma shows up in the body provided the clarity I needed.
“Traumatic memories are fundamentally different from the stories we tell about the past. They are dissociated: The different sensations that entered the brain at the time of trauma are not properly assembled into a story, a piece of autobiography.”
When I close my eyes and think about the surgery, in addition to the immediate tears, I visualize a black box. I can’t see a thing. It’s almost like I have to squint hard to piece together the story, stabbing at the black screen to create an opening. To see an image of the hospital room, the feeling of waking up and being told I may never swim the same again. And then another of the hotel, my dad’s anxiety around changing my very raw wound for the first time. It feels like a bunch of raw smoothie ingredients put into a blender. Is that kale I taste? Ginger? I don’t know.
“The emotions and physical sensations that were imprinted during the trauma are experienced not as memories but as disruptive physical reactions in the present.”
I may not be able to piece together the story of the surgery, and the three years of various chemotherapy protocols that have followed it. But I can begin to understand how my body is holding these events and emotions as a way to work with and release them.
Turning to dance to get into the body
In February, our good friend David moved to the apartment below us. Daily dinners and walks, an always open door, it feels like an episode of Friends. We even nicknamed ourselves “The Thrupple”.
Some mornings around 7am, David plays loud electronic music and dances around his house. Normally I would probably be annoyed as this is during the time I’m usually journaling. But lately the words don’t come. What is supposed to be a stream of consciousness results in a few measly lines. Not unlike my blog—I’ve been so in my head, frozen and struggling to connect with my inner wisdom.
So last Saturday, I convinced Mark to join for a morning dance session. We pranced, shimmied, and shaked our way around the house to the Flashdance soundtrack. In the process, I felt an emotive release, just moving in the way my body wanted to move. Afterwards I journaled and so many thoughts and sensations poured from my fingers onto the page.
This is a small data point, a waysign, about how the arts can help us get out of our thinking brain and into the feeling side. What next?
Bringing in the experts
I’m step one on a stepless journey. I have more questions than answers. My trauma is still lodged inside my body. I started seeing a reiki / massage healer, went to the chiropractor for the first time in 6 years, reached out to a therapist to explore EMDR.
I aim to go deep into the well of this unknown. And I promise to share the learnings as I go.
If you have any healers, techniques, or resources that have helped you explore trauma and get into your body, I’m here listening 🙏.