Astrid Swan

It is kind of my second time around cautiously treading the thin ice of "life after breast cancer treatments". It's only partly true, because of course now I am a stage four girl and so this will always be life WITH breast cancer and treatments. But right now I'm living the best possible life (if quality of life can be deduced from scans and blood tests and the severity of side-effects). Today it was confirmed to me by my doctor that I get to continue my life as a NED stage IV breast cancer patient. NED is short for no evidence of disease.
This is a huge privilege and a victory against the odds.
This means that in all the places where there was a disastrous dangerous shady mass in May 2017, there's now just scarring and Nothing. the good kind of Nothing. The lovely kind of scarring.

For the last three months (time between scans) I have lived in various stages of certainty and despair. I have been devastatingly certain that the cancer is back. I have spent my days studiously running away from my fears while totally unable to run at all. I have lived a kind of theatre performance, where my physical being has performed normalcy while my emotions and ideas have given me a solo show of nerves, ticks and obsessions. Consecutive common colds, side effects of chemo and other treatments, tiredness from overworking, family life and illness extras have all turned in my mind to warning signals: the cancer is back – you are dying.

What do I turn to then, when I have been so hilariously wrong?
When in fact, I need to address my tiredness and my emotional and physical wellbeing from the point of view of continuing life rather than letting go? When I have to hold on to my messy attachments and my new and old projects and I have to live with a different kind of uncertainty. The kind that holds the uncertainties that accompany terminal illness and the ones that relate to living in general.

Like what if tomato sauce in a can was first informed that her expiry date is in six months but then she would be given an infinite future later on and put on a new shelf with a better view all together?
How would that tomato sauce feel? Or what would it taste like?

I guess I have time to ask myself that question now.
(Last time I got to that stage of asking, I began to write songs for From the Bed and Beyond)
Maybe, during the last six months I thought I better not go there.

So, just to remind myself: I'm not tomato sauce. Not even close. There's still work to be done with definitions. There's writing to be finished and songs to be sung.

And because there's no one else here telling me this right now, I have to tell it to myself:
It's ok to not be so ok, but in fact to be crumbling. Crumbling is a privilege that I can now afford.

Tomorrow is my birthday. I'll be 36. A very good age to be alive, if you ask me.
This here blog has been a little silent in the past months. It's been the silence of recovery, return to an  insane (and self-tailored) work schedule and a pause from reflection.

Mostly it's been a silence out of the necessity of needing to extract every possible minute of the day elsewhere, in other creative expressive processes. You'll be hearing more on that stuff soon.

But this week is so full of wonderful things that I need to stop, write and celebrate. Bring on the champagne and the glass flutes!
I was nominated for an Emma Award in the Critic's Choice category!




Today the nominees for the Nordic Music Prize were announced. My album From the Bed and Beyond is nominated. You'll need to check out the other nominees (from the link above). They are insanely talented, brilliant and amazing – and famous. I am proud and surprised and happy and humbled to be in this company.

Up until this point, I have never ever been nominated for any award, so I'm going through the motions. It's weird. I suddenly realize that there is a difference in being an Oscar Gala fan (as annual TV entertainment) and to be a nominee for something and to entertain the idea of actually having to go to a gala. Or getting to go...

I'm also realizing that while I have always thought that I'm doing worthy and great things artistically, there's a kind of difference when others think so too 😂...



The other lovely thing that I am happy about (and scared of in pretty equal measure) is that I am giving a talk this week. On Friday the 26th of January, I will be talking at Creative Mornings Helsinki. The venue is Design Museo in Helsinki, the time is morning (breakfast starts at 8:30Am)!  The language is English. The event is free, but you have to book your tickets through the website in advance. This month's theme is anxiety and my talk is titled "Confessions of an Anxious Memoirist".

All in all, today's January blizzard doesn't signify traffic jams, loneliness or distant coldness to me, but crystallisation, inspiration and hope.
I hope your 2018 has started with a positive feeling.
Here's me ending this post with a humble wish that you are doing ok!

Astrid

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

Silences

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.

Self-portrait in 2011: pregnant and in red

Then and Now

These images bring me back to another time. I was 29-years-old. Early pregnancy, not yet a mother, but beginning to construct an identity in transformation. Turning into something that nothing in my previous life had really prepared me for. Imagining, making space, fearing the loss of the possibility inside me, agonizing over the questions: who will I become? What am I now? Will I lose something?
Can my body really create a baby?

I was blissfully unaware of what was to come when I tiptoed into motherhood while writing advice books for children about farm animals, mini pigs and frogs (unglamorous, but I had to survive somehow). Yes, it is possible to remain unaware whilst overly preparing intellectually. Still, saying yes to this twist and change is the best thing I have done. How could I have known that becoming a mother would edge me closer to other events that were entirely out of my control? Other seismic life changes would follow. How was I to understand, that control was an illusion? That this illusion was offered to me through education and the ethos that hard work, social posturing, right eating, moving and thinking can keep me on some known track.

I had no idea. I was privileged, loss was strange to me, despite the fact that life had not been very easy until then either. I imagined all kinds of scenarios. I was empathic and fought for the right of being different, appreciated and free. But let me tell you, that beautiful young woman and this woman I am today – we are the same person, but each cell of this body has died and new ones have replaced them. Wrong cells have grown and taken over too. Things have gone horribly wrong and amazingly well almost simultaneously. So now I'm same but entirely different.

My 20s: pretty and lost

From here (in my bed with chemo side effects beginning to hit me) I think about my 20s with empathy, mixed with pity and acute jealousy: You dumb dumb woman, why did you waste all that time with insecurity? You had two breasts, a waist, two feet, two equally proportionate arms and a pretty head with a set of nice brains inside. You fitted into flea market vintage finds, spent large parts of your student loan on shoes and fast-track unethical clothing (as well as gasoline for a car you didn't need). You were smart, learning to articulate your ideas, you were creative and followed through. You ate carelessly, exercised marginally, enjoyed sex, had lovely friends, studied to become a Master's Degree holder at the age of 27, wrote and recorded three albums and made one cover album, toured around the world. You amassed experience and knowledge. You enjoyed privileges that a poor teenager from the suburbs of Helsinki and somewhat unstable home life could not have imagined. Meanwhile, you carried a heavy load. In addition to insecurity you had packed along sadness, anger, feelings of loss and denial. You had no language for your agony and no outlet most of the time (except for music). You struggled to get help and struggled to form strong enough symptoms.

Most of the time in my 20s I was high-functioning and appeared super prolific and successful holding down a musical career while being a diligent university student (and a long-term partner for my now husband and a part-time parent to his daughter). Being a young woman also submitted me to harassment, the sexual and verbal kind. I had no idea how to protect myself. I studied the history of feminism in the university, but in real life I was afraid to say when something or someone was hurting me. Often, I didn't know that it was. The daring to change things around and begin to listen to myself and my feelings came through a full stop: depression and its successful treatment in therapy.

My 20s was a careless wasteland and a soil for growth. Both a burial site and a tarmac for new flight. If the human teenage years are often looked down upon as the site of formation (and not fruition), I would add the 20s into that packet. I would also like to be kinder to my young-woman-self, – I would remind her to have more fun, own the fun she's having, enjoy it more and spend even less time with concerns.

In my 30s I was supposed to be happy

My 30s was supposed to be the happiest time of my life. This was an expectation I developed as a young girl after a good friend of mine introduced me to the idea. We imagined our futures through literature and the 1990s Hollywood movies, old musicals as well as some opera and some ballet. It was both a wish and an intuition.Who knows, maybe my friend forgot the dream of "our good 30s", but I carried it around like a promise.

Self-portrait: resting chemo week 5/6

In my 30s I was going to have arrived at a place where I would have what I need. I would be an adult. I would be doing professionally what I want, sexually what I want, I would define my relationships with others. I would own beautiful things. I would enjoy what brings me pleasure and I would know what I need in my life and what I don't. I would express myself without fear. I would own my dream wardrobe, expensive shoes and soft silks with funny detailed jackets. I'd look good and confident and I'd feel it too. In that dream state I'd look at my struggles during previous decades from some distance, having learned and moved on. I'd be communicating, yet protective in equal measure. I would be a parent too. I guess in my mind's eye I saw a black and white photo of myself in Vogue: a fag dangling from my lips, collarbones piercing through skin, wearing a half unbuttoned blouse, a disheveled bob of hair, effortless denim, wine glasses, a bunch of seasonal flowers on the table, a city home and a summer house near the sea. That's some supermodel obviously.

Now, in the middle of my year as a 35-year-old, I think of this young woman's dream of happiness located in this age and I see both dreams that came true and the underlining meanings and events that I had no way of predicting. The reality of my life now would have scared the little woman to her
bones. Still, she wasn't all wrong about this decade in life.

Self-portrait with a chemo scarf I made while suffering the side-effects of treatment in summer 2017

35: Where am I right now

Four days after my 30th birthday I released a human child from between my legs. I struggled through the first years making cocktails of blissful baby love, the loss of my previous self-image and sleep deprivation. I married my long-term partner (in a secret ceremony) after he proposed to me in the hospital where I lay feverish after an 18-hour delivery. I alternated between happiness and discontent. I also became a hell of a lot more confident and went for my needs and wants. My breasts could make milk and sustain a hungry child. My songs could pierce through to their meaning. My wardrobe became bold and luxurious. I committed to my life, dreamed of returning to the university to become a researcher while songs kept appearing through the ceiling and the floorboards. In 2014 these dreams were manifesting fast.

Then at 32, very close to my birthday, I became a breast cancer patient. I entered into a tunnel of extreme treatments and hospital life. By 33 I was a survivor learning to live without any normal hormone cycle of women my age. I was exhausted, living with symptoms that would have been normal for women 20 years older than me. I was going through acute and sudden menopause caused by hormone blocking medication that was supposedly keeping me alive. The doctors told me it was my way for more time on this planet. My body that I had just become familiar with as a source of pleasure and pride after childbirth, was now sad – like a complete stranger attached to me somehow. Everything reeked of death, hospitals and uncertainty. I didn't want to get to know this new me. I imagined that the old me would return if only I waited patiently.

So I got busy with life: realizing dreams, professional and otherwise. I traveled with my family, wrote songs allowing myself to focus fully and with complete intention. I applied for grants and got them for art, while not getting them for research. Letter by letter, note by note I gathered a belief in my self, in my truths and experiences, in my right to exist and express myself. From the edges of death I returned full of force and fragility. I was sailing full-tilt with black sales and glamorous shoes. I knew in my body that there are no promises of tomorrow. So I held onto the moments, the people and the places where I resided. I began to feel comfortable and curious at the same time.

By the time I turned 35 I was sick. My 36th year began with intense struggling towards the realization of my dream shows for my new album and the struggle to stay afloat while strange symptoms were gnawing on me each day a little more forcefully. I have remained in between a state of professional bliss and physical agony. At 35 and a half I am a chronic cancer patient with stage IV breast cancer.

Instead of a summer of cooling in the breeze with my long hair blowing and my spaghetti-shoulder dresses flowing, I have been a bold woman struggling with chemo side-effects and the mental adjustments that one makes with this re-diagnosis.
Yet, against my own expectations, I'm enjoying my life right now. Most of the time I am happy about where I am (I know, it doesn't make much sense). I don't feel like I've been dealt a raw deal and an unfair amount. I feel privileged and look forward to so much.

Oh, and I've began to plan my 40th birthday!

2052

In 2052 I will be 70-years-old
I will be ready to die

And if I am already dead, I'll finally let go
Because until then I'll hold on, just a little
I'll remain in orbit nearby,
checking in on loved ones
stroking cheeks with feathers and cloud dust

I'll be nearby and in the dusk
In shadows and in the rain pouring down

Although maybe, I'll be flesh and blood,
alive and complaining
moving with anger at what is failing
alive and refusing to let go even still

In 2052
My youngest will be the same age I am now
He will be fine
He'll be living his adult life taking care of his family
what ever that means then
children, cats, cyborgs, sister, partners and visitors
dear strangers passing
his kin
his work down here

I'm hoping this planet will be more focused around peaceful solutions,
caring and seeing eachother
I'm hoping there'll not only be tolerance
but love
I'm hoping vulnerability will be a token of strength
no longer overpowered by the pretence of control
no more puffy sleeves with known goals

By then I'll have driven my grandkids to all kinds of adventures
in my beat-up car that still glides on the old-fashioned paved roads touching the earth
where hardly anyone wants to drive anymore
I won't be afraid

My children will have taken me to fly in their brand new flying vehicles
we fasten our seat belts
but the computer does the driving
while we watch a movie
or eat cake

Riding bikes, wearing helmets
driving cars with humans in the driver's seats
these old narratives
will look irresponsible by then
my stories will show me up like an old hippy parent
who didn't know the first thing about safety

Talking about emotions will be as common as not knowing
how to talk about them was in the early 2000s
or during the 20th Century
at the time I was born,
which now is a distant extraction
a memory turned gray

The world will be beautiful in 2052
not because it's perfect and all suffering has ended
but because I'll see what's flowing forward,
the short moments where fragility and
the passing of time look like art once did

where nature and AI begin to resemble each other
where we know that everything is natural
and unnatural
where duality breaks

Then I'll let go
finally
content and ready to leave this planet
where I hovered possibly as a dead soul, passed too soon
too sad with so many unfinished cycles around the sun
cracked hope, loss and ungained insight
where I remained out of love

or maybe I'll let go
as an agony ant
with aching bones and a memory that escapes me
never content
hungry for more time

clutching at roses, pink crystal and amethyst
unfinished
alive, until my last breath

All images from Instagram by various and wonderful people who came to see me at Flow, Sunday 13th of August 2017. Thank you!

Photo by Tekla Vály

So my last blog post was amazingly well read after the Finnish media wrote sensationalist news stories based on what I wrote. An avalanche of concerned people contacted me thereafter wishing me well and suggesting what ever help they thought I might need. Cannabis oil, purifying of the soul, Jesus, diets and special healing energies... you name it, I have been told it cures cancer.
While some of these approaches felt supportive and helpful, mostly they were intrusive and unnecessary. The media told 'my story' emphasising tragedy; they presented metastatic breast cancer as a heart-wrenching news story. Journalists had to work rather hard to turn my blog pontification on life and death into sellable headlines and pathetic sounding last goodbyes... even my Instagram photos became companion pieces to online news feeds. And people came flooding to read this blog.

Because of the unexpected reaction of the media and the responses of readers I have had to take a few steps back. I needed to consider what I am doing here and what I want to say. What I know is that I don't want to be silenced. I don't want to shut my mouth even though not sharing would be a simple way of avoiding misunderstanding, misrepresentation or the burden of unwanted attention.
My writing is intended for you and me. For us – the people who are going through each day with struggles and still waking up to see something beautiful in life.

I don't blog so that media reps can write fast tragic reference pieces without asking me and with no intention to interview me. I'll give you an interview if you ask kindly and with intelligence! Together we can have a magical conversation. Still, my feelings are hurt when my blog posts become the fuel of headlines, or when I have to spend my time deleting messages from concerned citizens who are mistakenly thinking that I am not being helped by medicine and hospitals.

Writing this blog helps me with my thoughts and feelings. It is helpful to share glimpses of my life in their imperfect fleeting state – because I don't have time to wait for some perfect amalgamation before I say something. Through writing I feel less lonely. I also realize that a stranger may stumble on this page one day and find something she needs. That's enough for me. By writing my blog I hold on to the idea that something meaningful may come from this difficult passage of time. So I will continue.

Why my cancer is not a news story

So I'm still here, even though it hurt me to be so exposed. I'm here and I am not looking to become a news story. I am not looking for an alternative cure either. I am not desperate or hopeless.

I am in good care, hopeful and supported.
With a lot of luck, I'll be around for years to come. No one knows.
But right now I am doing what I love: music, writing, researching, performing, eating, walking, talking and sharing. I feel lucky to be me.

I have energy and time to get annoyed by how little people know about metastatic breast cancer.
I have good reason to want to change this, to make people aware and to demand more research funding, more support and more awareness. It is time that the pink washing of breast cancer ends and we acknowledge that BC is a big killer of women – especially its young victims.

Living with cancer does not make me special, news-worthy or sensational. It's unfortunate to be ill, but there are many of us. And I am special, but not because of my illness. There are increasing numbers of young people living with cancer. Every third person in Finland will have cancer at one point in their lives (go to Syöpärekisteri for research and statistics in Finnish). There are many families losing a member each week. Yet, when cancer hits at a younger age, it appears tragic and uncommon. But is it really?

Living with cancer is tedious, boring, repetitive, like a dance on a tight rope but also like a stay in a windowless room. Living with cancer is just that; living. It is the weight of very bad days, pain and suffering. It is moments of joy – long stretches of happiness. Living with cancer is making the abnormal into routine and going with it. Forgetting that I am ill, then remembering again. It is learning to ask for help and expressing my boundaries, and accepting that all of this changes anyway.

It does sound dramatic when I tell you that I am living with chronic illness for which there is no cure. But this does not meant that there is no treatment. There are all kinds of targeted medicines, chemo, radiation, hormone therapy and so on, it's just that they aim to slow down the disease, but cannot cure it. Still, many patients with MBC are exceeding their prognosis by years. So there is hope that something comes along in a few years and changes the life expectancy for me and my sisters. Yes, there is hope.

I am getting ready for Flow Festival in a week's time. It's going to be special. I hope to see you there.
A week ago I had the honour of doing a show at Meidän Festivaali with Stina Koistinen and cancer researcher Suvi Savola. We had a wonderful time! Thank you!
You'll be able to hear the new composition I did with Stina for the Meidän festivaali show at some point this coming fall. These are just some examples of the amazing and lovely things I get to do and the people I get to work with because of cancer... Life is bittersweet.

Oh, and here's a video of what not to say to someone with cancer!
And here's an article on the same subject by The New York Times.

Photo by Tekla Vály

What is the worst thing about being a mother with metastatic breast cancer?

For me it is knowing that I will leave my child behind when he/she still needs me. Too early. At some unknown point in the near future rather than much later, when it might feel natural.

I live with the relative nearness of my own death as a reality and as a futurity that remains unreal.
I live with the fear of this permanent separation and try to prepare us somehow. It is a driving force for action and a black hole of sad emptiness.

Yet, even this apprehended separation (which feels like a failing on my part, even though rationally I know it's not) turns into a practical matter. It is a thing I want to prepare us for, while we live our lives together as normally as possible and hope for more time.

Mothers dying and leaving their children behind used to be a thing I did not wish to think about. It was the big fear, best kept outside, without language, without a name. Loss happened in books, movies and it happened in other families – first in families I didn't now and then in families I had gotten to know. Now it is us – this family and me. As silly as it sounds, being a chronically ill mother isn't something I aimed for or ever prepared for. How could I have? Even as a "cancer survivor" I mostly just pushed this possibility out of my thoughts. Still, here we are living out days with no promise that I'll see my child next summer, that I'll walk him to school on his first day, or that I'll be there at any big milestones, let alone the small important days when something particular happens and he might need my support, baking skills or my watchful eyes.

I tell myself: remember, everyday mothers lose their children and children lose their mothers somewhere near and far. It is a fact of life. It is not the unnatural and distant event we wish to conjure it to appear.

Just this week near me, an adult son lost his loving mother to cancer.
And a young mother left this earth after a huge fight with a version of the big C, leaving behind her beautiful daughter. I have been sad because of these deaths and angry; I've felt compassion for the ones left behind, the ones alive and in mourning.

On Monday morning I was taken by an ambulance to the ER. I knew that this wasn't my time to die, but felt too weak and ill not to worry about that possibility. Never returning home. The hospital as a space station. A lost and found. On the short ride to the hospital I lay thinking about the mothers who passed – I thought about timing, the conditions and how death manifests itself through sterile hospital equipment, small windowless rooms, silences and how it becomes familiar and inevitable too.
It becomes so everyday and remains completely mysterious all at once.

My hospital visit this week was not in vain: I had an infection and needed antibiotic infusions to stop the infection rates from skyrocketing. Luckily, I didn't have to stay at the ER long, because there is a home hospital service in Helsinki, for which I qualified. A nurse was sent every day to administer my antibiotic and check up on me at home.

I returned back to my familiar. Back to the middle of the mundane and the brilliant precious moments that occur each day.

There I remembered: People survive losses. They continue to live, even after a mother dies. Or a child. How well they fare depends on personal resources and on support structures, the ones left and the new ones that are found.

Letting Go

In the past months (since my metastatic BC diagnosis) I have prepared and planned for the time when I am no longer here. Recently, I have started to change from wanting control to letting go.
I have chosen to let go of some preparing that I initially thought I'd like to do. Now I think that when I'm not here, I won't be. That's simple. So there is no point in trying to make all life decisions concerning my child's future now, pre-buy presents, write letters for the next two decades of birthdays and other possible milestones or otherwise attempt to create a future presence for me (in my absence).

The reality is that when I won't be here, I'll miss everything. Slowly my loved ones will not mind that as much as they will in the beginning. I have heard that the sorrow over losing someone you love changes little by little from a gripping pain to an ache and then it turns into a faint sensation (of what?).
My loved ones will remember me through memories and pictures and my writing and songs. They'll remember me through furniture, and smells and clothing and places. One fragment at a time, life will bring new experiences, new material things, new phases and ways of being. New people will come, so will new emotions, new obstacles and new happinesses. It will be ok. It will be fine that I don't lurk in the corners in the form of agreements, letters and unopened surprises from someone long gone.

What I've come to think is this: It will not be my job to define my presence after I am gone, it'll be the choice of the people living then.

This realization frees me to concentrate on life in this moment. It frees me from trying to conjure up futures that I cannot predict.
I can just live here with these people this weekend. I am free to be a faulty, sometimes nice, sometimes irritated and irritating mother (and partner). I won't be defined by my illness or burdened by the need to fill the gaps in other people's futures. I won't have it all figured out, I won't have the experiences of a 90-year-old when I die or the perspective of a 60-year-old. And what I will not have lived, I will not know. That's fine.

So here's what I think:
The secret to living as a chronically (and at some point terminally) ill mother, is just to live like any other mother would.

What a relief.