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| Image by Tekla Vály |
Broken Story
This is a broken story. There are so many lines I refuse to write. I both avoid chronicling the passing moments, the news, the small and large things, the shifts and turns from where there is no returning and I want to leave traces, details from it all. I mourn the days lost. All the days that were so important, the crumbs that made the whole, of which there will never be a record. Instead there is this document, and a parallel story in the paper diary and all the notebooks which mix work, ideas, diary and lyrics into an utter mess. Because for me it all relates...The disarray and the gaps nag at me. I so wish to organize this life. I want to leave behind a meaningful archive. And yet, I cannot write, or I do write one moment and say nothing the next. This whole life, moment to moment as I live, unrecorded – as any life. And then the awareness of a jumble of artefacts left behind. Not as a trail to find me, but as tokens to collect and assemble a whole other narrative. Not MY narrative, not an intentional image if one would form, but traces scattered. I think writing is my duty, a responsibility.
Anticipatory Grief
Over the past years, I have held on to a dark and heavy slow-motion of letting go of it all. Yet often it has appeared comical because of time's passing. I have turned this letting go into a joke almost, laughing at my own dramatic expressions of living on the cusp. Now again, it appears there is realism in this desperate darkness, the anticipation. It is just so difficult a space to occupy, it makes everyone uncomfortable. It’s like that thing: looking down into a toilet bowl, which as a child we were told would not be a good idea.Now the dark stone -feeling is right. It blankets us even here, where it was almost a memory until now.
Although life keeps happening as per usual, there is the cinnamon dusting of anticipatory grief. Every beautiful line and thing is noticed for its perfection. Deeper hugs, longer and more of them.
We linger, we linger in this now.
Brain Storming
It takes me a few days to gather myself from a deep pit of bad news; the fact that my brain mets need treatment. By Wednesday, my first appointment with the radiologist, I am accustomed to the idea. I can take the mask making (think a kind of hospital/space version of S&M fun) and the symphony of the MRI as it really is musical this time. I can take the absurdity and the carelessness of new doctors working in the cellar. I feel my agency hung on things like not needing dexamethasone and not losing my hair in chunks at least. My best distraction at the hospital is a friend sitting in each room with me. In the mask making space, where I lie for fifteen minutes inside a plastic mask covering my head apart from eyes and nose, she talks to me about a tv program where couples have sex and then end up in the ER. She makes dates on Tinder while I lie still. Her actions make for consoling discussion erasing much of the despair in the room. Friday afternoon, not expecting a call, I get one and the same strange cellar doctor states matter-of-factly that there is a snow blizzard in my cerebellum.I begin calling the metastasis a brainstorm.
I am brainstorming.
The doctor's words linger:
if we don’t treat these now, later we could be in a situation where they cannot be treated… One sentence justifies my suffering. I am willing.
The outlines of a finitude are suddenly just there, visibly painted in front of my mind’s eye.
Just there, is the line from where there is no return.
I can be here now, but a light gust of bad luck can blow me over to the other side.
I am a wind seedling.
I am tumbling.
The doctor calls it a situation that needs more treatment. So now my hair will fall out in large clumps from the back of my head. Now I will have to eat dexamethasone for two weeks. Now the whole area of the cerebellum will be radiated on a low dose and the two larger metastases will be blasted with the planned stereotactic radiation.
While she holds me on the phone with her monotonic voice replying to my questions, I feel calm and pretend with her that I believe her statements of business as usual. I write things down so as not to forget. Then, just as suddenly, I am on our new bed alone, with the phone off and my previous work stuff lying there looking like the most unimportant trash. I cry and type text messages at the same time. I send the news off to different directions.
Gradually "a spot of cancer" is getting worse.
I sink.
Medical Anxiety
I start taking dexamethasone two days before the first radiation treatment. I take the pills three times a day. I have great anxiety about it all weekend, because my experience with this drug is that it makes me very sick. After two days of the pills, I am emotionally unstable, crying at every juncture. Within three days I have lost myself into a fog. I am distant from myself, inside, deep somehow. The outside world is too loud, too active and triggering. It is as if there is a curtain hanging in front of my eyes, clouding my vision. I just want to sleep and exist in silence. But even the silence feels dangerous. My thoughts race at a high speed. I am not connected.I think to myself: now I know why Sylvia put her head in the oven.I cannot live like this. I would rather die than to lose myself.
Luckily, it is clear my symptoms are from the cortisone and not from grief. Of course I am sad, but the sadness is not incapacitating me, the drugs are. I have never known such depth of depression. The dose of the cortisone is lowered and instead of ending up in treatment for depression, I manage to walk myself to the radiation five times within the next two weeks. The treatment itself is like a scene from a science fiction film. I am Hannibal Lecter, ET and Sigourney Weaver all at the same time.
Friends
My friends walk me to the machine and wait in a little booth nearby. Then they take me to lunch and walk me through the yellows and oranges of autumn. I am deeply moved by the depth of their care. They are willing to accompany me to the ugly buildings and sit through boring treatments. They take time off from their full lives to sit next to me when I cry. They make me laugh. They tell me about plans, daily life, dreams and we linger on a bunch of ideas on how to change the world for better. In their presence I am comforted because I know they will go on, whatever my situation and because they are there with me. I feel lucky.
PS: Thank you for reading and I do hope you respect my wishes to not write news stories or articles based on this post.
