What Does Paint Have to Do with It?
In my not participating, I had all the time in the world to imbue the new wall with meaning. I came up with some of the following:
1. I am not needed.
2. My ideas are not always great.
3. My partner's taste is good.
4. I am witnessing a switch from the color of sorrow, the oceanic shade that held us in deep deep water.
This new shade is celestial.
5. Number four let me to the questions: am I supposed to be here? Am I supposed to be alive?
The last one is the questions that burns me these days. Have I outstayed my welcome? Am I living like a ghost in my own life? Am I "memorializing" and being "memorialized" instead of LIVING.
Wasn't that the meal I was most hungry for? Life.
So now I feel like the living room is not mine, but kind of oozes life after me. I feel like I am in the future.
I also feel that the living room is no longer grieving, it is moving on, but I am stuck.
I'm still grieving. I'm still sick and I'm still here.
And what's more: I still don't know how to grieve. So I just tell myself it's all part of the process. It's a waiting game.
The other thing I do in this spare time of mine is keep mentioning our kitchen lamp. It has to go. I am desperate for change. I don't like the one we have. I want to have a vintage glass pendant hanging low above the table. Something really old and pretty and impractical. I have been lazily eying options for a year. I like to think that French vintage online stores are my forte. I like sugary edges and campy pink hues. But most of all, I finally know what I do not like. That much is clear. And that which I do not like is hanging in my kitchen. But now I don't know if I should make this choice or just let it be. Let N or someone after me buy the new kitchen lamp. (See, death again). It'll be giving light to their gatherings after me. Mostly anyway. I'm trying to say this without resentment. Although of course I resent the idea. Maybe I will buy a really ugly Venetian chandelier just out of spite. Let it always remind these people of me and my random taste (?). Let it be an endless conversational piece. Let my presence linger in the light.
Lamps are status symbols. My status is passing or nearly past. My status at most optimistic is ill. What kind of light bulb goes with that?
The only lamp I love in our home is an old oil lamp turned to an electric one. It is currently not working. All the other lamps (and we have way too many) were bought because they were at least 40% off, not because they are what I love. No one wanted them, that's their story.
Hovering in the Info-graphs of Cancer
I have grown accustomed to living in the margins of survival graphs and predictions. I used to think that 50/50 odds were bad. Now I reside somewhere around the line that has curved down to indicate death, but I hover above it batting my imagined wings. From my first cancer diagnosis I was given 50/50 or less then 50 % chances of recurrence. I was told my future looked grim. This felt hard to hear but I am also thankful to the young oncologist who decided to be candid instead of hopeful. After being diagnosed with metastatic breast cancer in 2017, I found out that only 22% of patients were alive after five years. In 2019 after being diagnosed with brain mets, I checked the median overall survival: it was 18 months.
At this point I began to think that maybe numbers and median curvy lines indicating doom had nothing important to tell me. My treatments were no longer based on robust research alone, because very little research is done on my specific cohort: women with metastatic breast cancer in the brain. Instead, my treatments are anything and everything that will keep the cancer kind, slow and preferably invisible. I need to accept that while my life is being prolonged by medicine, it is no longer an exact science measured by the steps of everyone whose been here before. I need to believe I am an individual case. A lucky one. And in thinking like this, I know I am going the route taken by so many women I know ahead of me, now dead.
Facing more difficult times, I have begun to feel more warmly toward the people who say: maybe there will be a new treatment (they used to annoy me). I now hold onto the sci-fi hope that the future is littered with bright ideas and I'll be the recipient of their fruits. This is the only kind of optimism I can partake in that involves my remaining alive.
In my post-graph phase I wonder am I now a winner, having crossed over to the other side of the median graphs? Or am I levitating over an open grave? Or is this some kind of phoenix bird magic trick? I know it is not. I am just lucky. I don't believe in magic. Yet, every now and then I feel like contacting some masterful psychic who could crack a code or two for me and make me feel special and purposeful in this mess.
While others have been decorating and moving on, I have not just been making myself sick with this graph levitation of mine, but I've been reading books by wise women about cancer. My favorite genre.
Two Books That Shook My World
Last week I felt lucky to be alive and reading the pages of Anne Boyer's The Undying. I had been dipping into it in the spring, but was finally able to read properly during the oppressive heat of July. My expectations were high (see the cover image below). This would be the kind of writing about cancer I would relate to, the kind I have written and aspire to write more of. The book came out in 2019, like mine. Boyer also received her breast cancer diagnosis the same year as I did. Where we differ is that she has not suffered a relapse. Her book leads to a kind of healing. Though it refuses to tell such a story.My reading method was fervent. It reminded me of the first times I read Sylvia Plath in my teens. I read with a sense of urgency to be seen and understood and to know what perspective is taken in the next part, the next page, the next sentence. I read with a mad sense of connection. Boyer's style was porous like poetry flowing from page to page but it was also demanding, difficult, and unrelenting. While she wrote about her experience as a cancer patient she carefully argued and agitated against the narratives of cancer that usually get told. Her references were all familiar to me, her depictions of chemo the same. Boyer's writing flowed between the poetry of the intimate and then it built structures about structures tearing them down the next moment. Reading this validated not only the me who is a cancer patient, but also the part of me that was hurt by the criticism my book Viimeinen kirjani received about its complex structure––here is a Pulitzer Prize winning book that breaks the rules of linearity and stumbles into its own meta-narratives about telling the story of being ill. Here is how we demand to be heard.
Straight after I finished Boyer's book I dived into Jaoaud's memoir. I was ready to hate Suleika Jaoaud's Between Two Kingdoms. I wanted a fracture to appear that would make her annoying or faulty somehow. Because following her on Instagram and listening to her presents such a lovely, wholesome person that it makes me envious. But there is nothing to hate here. Her book is instantaneous, inviting and well written. She is skilled at expressing the shadow side of cancer, the emotional shit show. The struggle. Jaoaud was only 22 when she was diagnosed with leukemia with a grim prognosis. She is now in her early thirties and in remission, but her book describes the difficulty, emotional and physical pain, the grueling treatments that included chemo for a couple of years as well as a bone marrow transplant, and her prolonged hovering around death at a time when "everyone else" was partying, finding themselves and making their mistakes that become to be known as "life".
Even though I was ten years older when I was diagnosed at the age of 32, I am glad that books like this one has been written. Being ill while young or young-ish is a very different position to assume than at some other time of life. It has for so long also been considered the wrong time to be ill. We need so much more writing about this.
At times Jaouad's style is bordering on Eat, Pray, Love by Elizabeth Gilbert (whose blurb is on the cover), but instead of offering up normative femininity and consumer culture as wisdom of the free woman, this book looks deeper into the pain and suffering that is somewhat randomly and unfairly distributed to us. It is not trying to turn experience into get-well-soon cards.
Boyer and Jaouad do not give me answers. I know their references, both literary and embodied, but I need to read the stories over and over again. I'm in there somewhere. And where I am not, I will have to write my own story. Maybe it involves the celestial hue of our living room. Maybe my grief too.
The other day I wrote this in my diary:
I am frightened, I am dependent on others. I am in complete isolation. My dreams have dried up.
When I read these women, I think:
So is everyone else.
