Breasts and Other Silences

10:47 AM

From the Bed and Beyond performance at WHS Teatteri. Photo by Juulia Niiniranta


I have allowed myself to go silent for some time.
It's the silence of breathing in... exhaling and pausing.
Looking at my head in the mirror and watching light gray feather turn to dark stubble. Stubble turn to very short, but undeniable hair.  It's the silence of looking at this image and not recognising it while also going: phew... that was a close call, my lady.
Also, it's what happens when I am immersed in every day life. Writing, working, cooking, caring, sitting on the sofa, reading, thinking, tending to kittens and children.
Silence is my friend.

I cannot deny the impact of being exposed in the media. I cannot diminish the meaning of 'aftermath'. Because really, doesn't the nearness of death just make us fragile? Do you really think that it is news?
I don't. I think it's a question of degree. How much are you in denial today?
The events of my personal life (and some of their public interpretations) have created an unwillingness to share (and unwillingness to follow my own rules or the expectations of others). The same events have also shown me how important using my voice is. And so I have been sharing, in different spaces. For example these three blog posts for the Finnish Breast Cancer Awareness campaign last month.

While I find it important that everyone is informed about breast cancer and metastatic breast cancer, I found it especially hard in October to exist when all this light was sort of being aimed at the illness I have. Yet, so much of the exposure didn't feel right or even necessary. I'm still not finding information on metastatic breast cancer readily available. Nuanced public discussions about living with illness and the nearness of death are scarce in the Finnish media (and cancer sites and campaigns too).
Pink washing just doesn't seem to scare the ghost. Mostly, it makes for unentertaining entertainment. Yes, we need research funding so that one day, metastatic breast cancer will be like polio – a nightmare from the past. But I still have to live through this and die because of it. And I have to go out and live and meet the confusion and fears of those around me. This I face up to every day with varying degrees of willingness.

Performance at G Live Lab, October 2017 Photo by J. Niiniranta

On Breasts

Today marks a year since my last reconstructive surgery. I wrote this on my Facebook profile just minutes after meeting with my surgeon:

"Remember my upbeat posts about breast reconstruction and moving on with life in 2016? Well, here I am November 2017 after a meeting with my surgeon. I must admit defeat and say that I am disappointed. My good intentions and wishful optimism did not solve it all...After two reconstructive operations in 2016 and treatments for metastatic breast cancer between May and September 2017 I am now a woman with an aching smaller breast and too small (and deformed) silicone blob on the mastectomy side. I am not at all the breezy haired two-breasted woman I hoped to be at this stage. Instead, I am a fragile skeleton lady rebooting my life philosophies and shopping for bouts of happiness. Tomorrow I'll at least have a proper silicone prosthesis to make up for the size difference. Nothing much to celebrate. EXCEPT:  I'M ALIVE!"

Isn't it wrong that after these operations I am not whole and better, but get diagnosed with metastatic breast cancer?  Isn't it more than annoying that now I am not eligible for further reconstructions (at least for now) because of my illness and its treatments (which will never end)?
My augmented smaller breasts were supposed to help me move forward, into living without fear. I was frightened by the operations, but I chose to have them because of my yearning to move on. I wanted to embrace the possibility of survival and happiness, living without plastic fake boobs and the daily material reminders of my fear of cancer returning.

It's all so angering and unfair that I am overwhelmed (while I know that things could be a lot worse). Here I am, facing up to the task of continuing life as a chronically ill person. Living on. This is as good news as I can get. I am a person with so much privilege, so much joy, so many opportunities for expression and space for listening. How can I make space for the grief, disappointment and loss I carry along? How can I let myself take some moments to be sad?

Because really, isn't it just a little bit wrong to go through two reconstructions and come out as a woman who still needs a prosthetic breast? Isn't it wrong that no one tells me that I am eligible and that there is a partial prosthesis too? So for a year I wear just some fluff inserted into a bra... 
Mixed with my disappointment about how my life is turning out, there's a genuine sense of surprise. What am I supposed to do with these consecutive disasters? Make more art while I wait to die? Is my life really now a waiting room for leaving? How can I convince you and myself that in that case we are all forever locked in those waiting rooms?

Once again, I'm thinking about David Bowie making his last album and his choice of not talking about his illness publicly –– yet, configuring dying into his work. Dealing with illness and death, making it into art, as some people have chosen to interpret Bowie's style of living and leaving. I'm thinking about Frida Kahlo and the value of her life's work. I'm breathing with Aurora Levins Morales and crying with Audre Lorde. And still, I always carry with me Sylvia Plath and her artistic legacy. I'm building a Library of Sorrow in my home. I'm hoping that no one will judge the value of my life for the amount of years it will span. I'm hoping to outlive you all.

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