Body Grief Questions
I was searching this morning for resources to use for an upcoming project I’m working on surrounding chronic illness grief and ritual (aka my favourite topic to talk about) and I stumbled across a list of questions and prompts by another chronically ill creator that I found insightful. They had nothing to do with the project I’m working on but everything to do with my work as a human in this world, and I found myself sitting tenderly with each one.
I attended an event yesterday discussing medical trauma, and how to approach it from a somatic background. Navigating an illness since birth is a complexity all its own, an anomaly even in the medical world. I have no distinct memory of before sickness. In fact, as we discussed yesterday and I observed being broken down by area experts, my brain literally developed around the adrenalized state of chronic stress and trauma. There was no option for me not to be traumatized by my childhood. There was no option for who I am as a person not to be tightly fused with my illness. And I don’t say this as a good or bad thing, just as a statement.
And so, fresh off the heels of learning more about medical trauma and it’s effects on the body and the nervous system, and in the middle of creating a project that revolves around ritual and healing as it relates to the body, I thought I’d answer a few of these questions.
Who am I without my chronic illness? Pause.
Who am I with my chronic illness? I thought these were different questions but they’re not. Not for me. In both worlds, I am a person with the ability to abide with deep grief and pain. I am the maker of myths, the universe inside a human body, a poet. I think without my illness, I would have had a very different understanding of the world. Navigating less trauma could have made me move through the world differently. But nothing about who I am as a person would change. And… everything would change. Are we who we are in spite of what happens to us, or because of it?
How did I change when I was diagnosed? How did I not change? I don’t think of my diagnosis as the day I was diagnosed with Glycogen Storage Disease. The genetics of my body never changed, thus I did not change. When I think of transplantation, the answer becomes everything changed. Absolutely everything changed. The running joke is I acquired a new personality because for the first time in my life I had the energy to express myself. For the first time in my life I had a life. I became equal parts life and death, I gained an understanding of grief and interconnectedness I wouldn’t have had otherwise. They say transplant is a treatment, and it is but it’s not. It’s a shift in being, a reflection of nature, a process of fusion and intimacy. Did the person I am now exist before my transplant? Not in the same way. Maybe she existed somewhere, buried under all the trauma and disease. But in the same statement, I also hope the person I am now doesn’t exist in 5 years. I think being human is a continual practice of evolution.
How can I help others understand my illness? What do I not feel comfortable explaining about my illness?
I will explain everything, but not in the way you might expect. I explain through myth and metaphor, storytelling and poetry. I explain in how I talk about my body being connected to the body of the world, the way I am not a singular self but contain multitudes, the way I explain grief. It is not my job to educate anyone on the facts of my condition. Google exists. It is not my job to advocate for, raise awareness of or push an understanding for my experiences. In fact, that bores me. But if you listen, I will tell you everything about what it’s like to live in my body. I will tell you about the deeply human story of living in this body and I will do it by telling you about the fox and the bear and the prairie grass and the ocean.
What else do you want to know?
