How do you write about your illness? Why? For me it’s always been for the same reason I write about most anything – to assert myself. It’s been to document and map myself, keep myself, make myself. Save myself. I don’t have a chosen goal beyond this [yet], I think. I am maintaining my existence, over and over. It’s the practice of writing, and much like the practice and process of living daily, it’s a pained, painstaking process sometimes. It’s a flawed and skeptical and erratic practice. My illness memoir is process – currently in process – and perhaps processing. But I think that comes later. I don’t want my illness narrative to have a neat end, even as I hope – realistically – that my cancer will. I want to be stamped as CURED and fired from oncology, in as few months as possible, and forever. But I don’t want a neat ending to the overall narrative of cancer, because I don’t believe it’s possible. I don’t believe it’s desirable. I want to live with different layers of myself in past health, in oblivious ill health, in suffering, in a future reclaimed health.
The objects of documenting
Neatness seems far more fatal: She had cancer, she died of it. But even death can’t be neat, and to neaten it like this is a double treachery: the treachery of dying (even if it’s ultimately unavoidable, I would like many more years of living first) and that of being flattened as a narrative. In that instance the self is streamlined and, I think, stripped away. Notice I wrote in the third person, not the first. “She died” is the phrase of another. “She died” understood as a neat finality rather than an entire cavernous history of complication is a terrible flattening. We do it all the time.
So the project of my cancer, as I have immediately and accurately called it from the start, is the project of writing my cancer, that is of writing myself. That is, also, of performing myself, because I can never keep the acts of writing and reading and performing (and existing) quite discrete from one another. And that writing must be complicated; it must be clear-headed and furious. It must remain tangled as an overall narrative even if I am strong and clear, as I mostly believe myself to be. It’s this clarity that allows me to think that pain is transient but it’s also this clarity that has me raging while I wait for treatment and thinking that waiting is forever. I believe I’ve managed to maintain a great deal of solidity in myself, and yet much of that solidity escapes me as I wait in hospitals, losing myself in the system of disease. To experience that, and remember it, is also a sort of clarity, a sort of defiant self. Rageful desperation may or may not serve me, but it does assert itself. To dissolve into a depression, wholly and violently, seems to me the truthful and logical response. I want to hold onto that as part of my narrative, too, to make it both a transient thing – the reality is at the waiting does very much end, and much more tangibly than the current existential waiting I face around treatment and cure and living in general – and an eternal one. Time versus memory.
Writing about illness is acceptance and defiance. But the defiance isn’t always the neat – that word again – defiance of adversity, the fighting spirit that saves me in the face of cancer the enemy. It’s the defiance of being cancerous and cantankerous. In The Collected Schizophrenias (2019), Esmé Weijun Wang writes:
I'm still trying to figure out what "okay" is, particularly whether there exists a normal version of myself beneath the disorder, in the way a person with cancer is a healthy person first and foremost. In the language of cancer, people describe a thing that "invades" them so that they can then "battle" the cancer. No one ever says that a person is cancer, or that they have become cancer, but they do say that a person is manic-depressive or schizophrenic, once those illnesses have taken hold. In my peer education courses I was taught to say that I am a person with schizoaffective disorder.
What Wang writes is true, of course, but I bristle against it, not because this isn’t a common narrative of cancer, but because it is. I’ve never wanted to think of my cancer as an invading force. I want to annihilate my cancer, so that I can live, but I feel no invasion, no violation. I grew my cancer; it’s made up of me. I feel no great fondness for it, no twisted desire to keep it, but I don’t actually hate it. I hate having cancer. I definitely hate treating it. I hate fearing for my life, I hate feeling that I’m waiting to live again. Because yes, I too see myself as a fundamentally healthy person – and really by this I mean “person“ at all, as disease quickly strips us of personhood in the eyes of society and even ourselves – who is simply going through a phase with my current cancer, but that’s not quite true. I actually am cancer, currently, ideally not forever. And I am more than cancer, even if some days that seems a suspect proposition, even if I joke when catching up with friends that my only hobby is cancer, that my job is cancer. It behooves me to remember that I am a person now too even as I await my next treatment, its next side effects. I often feel that I am waiting to be a person again, but in fact, I am a person waiting.
"It’s been to document and map myself, keep myself, make myself." I love the idea of writing as the creation of a personal mythology. Even in the most difficult of times, that mythology is worthy of creation as it is part of a vaster tapestry.
I find very interesting the idea that you actually are cancer, currently, but also more than cancer. I think about how this idea relates to chronic and auto immune diseases, because one becomes that forever, not just for a period of time, but you also are more than just that, all the time. Thanks for sharing your process!