Certainty has left the building
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| Image by Tekla Vály |
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:
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
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 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.
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.
