Astrid Swan

Writing Published Between 2018 and 2020

11:21 AM

I've been so busy making the most of my time on this planet that I have mostly forgone the opportunity to recount what I've already done. So today I am compiling a list of my published writing of which I have not mentioned anything here before. In the last couple of years I have published two research articles (in A/B Auto/Biograpy Studies and Journal of the Motherhood Initiative), a song lyric of mine has been published in Lyrics As Poetry and a an introductory article about my creative works related to cancer came out this year in Wildfire Magazine. Yet, somehow I forgot to mention any of these happy moments. It took me a while to realize that everything relates. And that by letting you know about my works and these lovely journals and magazines, I'll let you decide how you might want to relate to this stuff. Of course, in 2019 I published my Finnish language memoir Viimeinen kirjani: kirjoituksia elämästä. I'll write a separate post about that later.

1. "Dreaming is Dangerous" in Lyrics as Poetry

It was an honor to be asked to publish this song lyric in the second issue of Lyrics as Poetry in September 2018. "Dreaming is Dangerous" is a song that was born as a complete lyric before it found its music and its way into the album sessions of what became Astrid4. It didn't make the cut. Then it was recorded for From the Bed and Beyond – again the song fell out of the album, but was released as a single in 2017. I am forever thankful for the statement that this journal makes: lyrics are poetry. For me, the poems that do not find their match in music, usually are forgotten, sleeping their princess sleep on pages in my journals, notebooks and diaries. Sometimes I feel sad for them. As if the pages have turned into little forgotten graveyards.

2. "Skeleton Woman and Other Stories: How MBC Made Me Break My Own Silence" in Wildifire Magazine

About a year ago I discovered Wildfire Magazine. Immediately, I wanted to be a part of this unique magazine that focuses entirely on young women's experiences with breast cancer and metastatic breast cancer (MBC). For their February/March 2020 issue, Changemakers, I wrote a piece about how my songwriting and life writing became the ways in which I made meaning out of illness and approaching death.

3. "Cyber Labour: Birth Stories on Mommyblogs as Narrative Gateways into Maternal Thinking" in Journal of Motherhood Initiative

I have been writing my PhD dissertation for the last six years (I am going to be graduating in 2021), the same amount of time that I've been a cancer survivor with intermitted bouts of recurrence and treatments. The "Cyber Labour" -article in this journal was my first published research article. At this point, it looks and feels like a beginning, which it was. The article analyses birth stories on mommy blogs and presents mommy blogging as a discursive "tool" for maternal thinking.

4. "Becoming D/other: Life as a Transmuting Device" in a/b Auto/Biography Studies

This is my second published research article. I jokingly called it a UFO while writing it – it felt so strange and so right at the same time. I was the author, but the piece felt like it was writing me. I wrote it for this special issue Life Writing in the Anthropocene in mind. it took two and half years until published from when I started to work on it. Academic publishing is slow and many doors may open and close in the process. My article considers death of a mother, the extinction of planetary life forms, and the role of narratives, archives, digital memories and lives as devices that transform existence. Importantly, the article begins the development of a new concept D/other.

Toiseuden synty: rodusta, rajoista ja kirjallisuudesta (Toni Morrison)

12:37 PM

Brain Storming : Fragments from the Fall

1:55 PM

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.

Certainty has left the building

9:15 AM

Image by Tekla Vály

Certainty Has Left the Building
In June my oncologist called me about some tiny spots that had been detected in my brain. This news came after an MRI scan of my head. It was taken as a precaution, after I mentioned I was eating painkillers for headaches nearly every day. The spots seemed harmless, like old news to me. I immediately assumed a deflective stance: this was going to be nothing – at its worse, a minor hick-up in my normal and very enjoyable life. I mentioned the spots only to a handful of people in my immediate family demanding them to remain stoic in their trust in my perspective. Yet, it seemed difficult for my very experienced doctor, her most trusted neurosurgeon and many other oncologist and radiologists to agree on what the small spots were or what should be done.

Weeks turned to months. I fell into a summer of reversals. One week I was to just be monitored every month with an MRI, the next I was to have one dose of stereotactic radiation. Phone calls kept coming at funny hours from the hospital, but they were followed by more calls taking back decisions more than once. In July, I was told again that we were going ahead with radiation. Letters of appointments were mailed to me and I began to adjust myself and the ones in the know to this new reality. Then my nurse called once more and said that I can tear all mailed letters of appointments because they were not going to treat me. She framed it as good news: nothing was going to change. As if the doctor's decision meant I no longer had something in my head.
I tore the letters when they arrived thinking I am a time bomb.

My first thought upon hearing about the tiny spots in my cerebellum was: now I know how I will die. I exist in a time that has hollowed and frayed. I hide my despair deep thinking I’ll deal with it when there’s certainty. Knowing certainty is the one thing absent forever. Certainty has left the building.

I am creating a void; avoiding my own reactions, feelings and self-knowing. To my partner and mother and child I have the story of my friends who survived against all statistical odds on the right side of the Kaplan-Meier curve. Those who are alive as we speak. These women are like fireworks in the sky above the curve lowered to death below May grass. I quote my hope-giving doctor to anyone who seems doubtful and I aggressively belittle each expression of despair my loved ones put forward. I tell them things that make me believe this is just a breeze. I suggest my relationship to oncology is comparable to dentistry. Am I leading them astray? Am I already cultivating reality in the amounts that I can take, creating distance between us for my own sake? What about statistics, the ugly words printed near the lowering of the curve? Should I lie down now?

What I Can Do

In the six years my mother had MDS, she wrote 100 blog posts, two books and two plays and directed a movie. There was nothing she could do about her death but to keep going in the face of it. Work was its own kind of medicine, even if it could not save her when her MDS came roaring back.

“I’m having a little health crisis.”

That’s how she put it when she called me shortly before Memorial Day weekend.

Jacob Bernstein in New York Times “Nora Ephron’s Last Act”

That "little health crisis" ended up being the one Ephron did not survive. I understand the necessity of framing her worsening health the way she did. One of the most important healing methods I can think of is to delve into my work in such a devoted and time-consuming manner that I simply do not have time to actively process how ill I am. I don’t have time to watch for unusual headaches or twitches in the eye. This is the secret of why, since my first cancer diagnosis in 2014, I have been working on a punishing schedule writing and publishing music, literature and academic research. This must be why Stina Koistinen is in a million different bands, groups and recording sessions. It is survival through art making.

Yet, in the quiet moments of July evenings I sense a new type of weariness. A disinterest is brewing in me. I keep asking myself is it depression, because everything these days needs a diagnosis. Even flighty emotions. I have a vague recollection of having felt this before, I keep quiet. I am tired of being the spectacle of illness for the sake of drama. I am tired of entertaining others with my destiny. Still, I cannot shake my interest in staying in the discussion about the insights that illness brings. Because in my experience, it does work that way. Illness becomes an illumination. I spend my summer reading and writing about illness and narrative. The library of sorrow I am collecting grows exponentially. I underline sentences and circle words here and there with my new rainbow pens. I come upon what David Rieff wrote about his mother Susan Sontag's refusal to go:

My mother had lived almost her entire seventy-one years believing that she was a person who would beat the odds, no matter how steep they seemed. In this, as in so much else in her life, she remained determined, and as consistent on old age as she had been in childhood. […] What this meant for her, she added, was an “absolute decision not to be done in.” (Swimming in A Sea of Death: A Son’s Memoir by David Rieff , p.23)

Over and over again, I make the decision to believe that I can choose to not be done in. The summer lingers well past its usual spell. Another doctor's appointment looms close.

September Issue

In the first week of September I get my August MRI scan results. I can already tell it’s not going to be good when my appointment is cancelled an hour before its time, the last week of August. I get pushed into another month, as if into another department of the year, or a chapter in a story.

I usually never take my partner with me to the hospital. I get irritated by him there. I cannot handle his emotions or his ways of coping (phone scrolling and incessant talking about politics). Now I have made a point about him coming along. We sit in the uncomfortable beige chairs of the waiting area. This time we discuss the British political drama. We speak loudly in disagreement. I do not accept calling LGBTQ -rights brave. I want to call them the norm. I focus on details, his terminology as per usual. I am oblivious to the old people who may be listening. The hospital makes me sick, because it is moldy and I have become sensitive to its air.

The doctor is nearly an hour late. When she does appear she creeps up and taps me on my shoulder gently inviting us in. She is hushed and muted and unlike before. Now there is evidence of growth in the images, she informs us after we are seated. The radiation treatment will be scheduled immediately. We are talking about brain metastasis. The uncertainty of “something in the cerebellum” is now called “two dots of metastasis”. Even the consoling mental image of the growth having been "tiny" is switched to the reality of something visible to any eye. Measurements are given, but I don't get to look at the scans yet. I am referred to the cellar, where cool-headed physicists and radiologists reside. My questions are batted off; someone else will know the answers better.

My partner and I separate in front of the hospital. He goes to work. I cycle to the post office to pick up an order of ethical hosiery from Sweden. The pleasure of my order has turned to emptiness. I am not sure if I should cry from anger or from sadness. Crying seems like a duty I have, the appropriate reaction, but I wish to deny the universe this obvious expression. The sea, the trees and the buildings all appear respectfully proportionate to my state. Do I need tights this fall? Will I live to see them break in the crotch and develop holes in the toes? I am thinking about dying in a biking accident.

I am thinking about dying.
Then I decide to not talk about this to anyone. I'll just inform the immediate family. I am tired of making my tragedy a public saga. I go home and wallow in loneliness and attempt to collect hopeful information from bits and pieces. The cancer community knows that brain mets are easy to treat and the treatment won’t make me very sick. Not like chemo. Piece of cake, they say. I drown my sorrow in work. Suddenly my academic paper is advancing in leaps.

I tell myself and my loved ones that life isn’t about to change. I have no problems with my every day health, my blood work is excellent, I have energy and inspiration. I ask them to push their despair to the edges of time. Still, the next day I cancel all my appointments and work engagements and meetings with friends. I am incapacitated by fear. I cry for hours. I write a poem about the view outside. I have no idea where to put my anger. There is so much I don’t want to acknowledge and so much I do want to grapple with, but in good time. For now I just focus on not folding.

Half an hour after I have written my poem and my cheeks are streaked from the paths of tears, I am on the phone with a friend when a rainbow appears in front of my windows. I know it is saying something like remember the beauty of this absurd life but I think it's too much. It's tacky from the universe to insert a rainbow into my scene of accute suffering. Yet, isn't it just like it too?

Note to media: Please, consider not writing news articles or anything based on this post. Any queries should be directed to Soliti or Nemo. Thank you.