My Way

When There Is No High Way

Painting by Aydin Aghdasloo

June 2011 life changed forever. The spell of having a long life stretched out before me was abruptly broken. Ironically cancer came at a time, when after years of trauma and trials (literal legal trials) I had finally found a purpose: Romania.

Three weeks into a three month preparation period I was called back. Instead of looking at where to live and finding funding for my projects, I was in hospital staring at the ceiling in blind panic or rage.

I learned humans can handle almost anything as long as there is perspective.
So how do we handle it when there is none?
When the treatment plans didn’t pan out or when as it happens to be the case for me, there is no treatment.

Welcome to the baffling life experience of a rare sarcoma having its second run.
And to a long-standing reflection on death and agency that doesn’t follow anyone’s script. Not even a medical one…

I don’t know exactly how to start this story or where we will end up.
All I know is that there is too much wriggling and wringing inside to keep it there.

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I was not the first in my family to have cancer. My paternal grandfather died from long cancer in his late sixties. He had so-called “dust lungs” from all the various unhealthy jobs he had like mining, tarring roads and removing asbestos. He also smoked like a chimney but I can’t remember if that had anything to do with him getting sick.

I do remember how he conditioned his illness and his timeline.
To only then concede and move up.
He said that if he would become bedridden he would want to end it. From his bed he beamed whenever we visited so the deadline was deferred.
When I can’t go to toilet on my own anymore I will want to end it.
He didn’t.
He held onto the very very last.
Only when the pain became unbearable and the next morphine dose would be lethal he left us.

A quiet thread on autonomy and dignity was present, even in him.

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The last time I saw my aunt, my mother’s eldest sister, she was swollen and yellow. During that visit my brother and I asked if there was anything we could do for her, she answered not now later.
There was no later.

I can’t recall the exact circumstances of her passing.
Did they perform the risky Whipple procedure on the cancer that had taken her liver, stomach and pancreas?

During the funeral my uncle, sitting next to her coffin with his back turned toward us, facing the top end of the wooden box containing her remnants, said:
You were a contradiction, running towards death only to try and make a U-turn at the last minute, when it was too late.

Only days before I had sat next to her coffin while the rest of the family had lunch.
I could not bear to leave her alone.
Now I had to leave her alone forever.

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I am like her.
I have not loved life.
Not consistently and definitively not unconditionally.

So when cancer came for me I had questions:
Did I bring this upon myself?
And whether or not I did, did I feel this life was worth “fighting for”.

Along the way I learned I don’t fight cancer, mostly I fight myself.
The only warrior stance I know how to take is a yoga pose.

Waiting for MRI scans to light up like a string of fairy lights I continued my love-hate affair with life.
Until the hate faded and love took on weird new shapes.

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I did not handle cancer with grace.
Not the first time, not now.
Although many of my loved ones would disagree.

A friend literally said:
I don’t think I would carry it quite the way you do. With grace.

I don’t know if Grace includes heavy use of swear words, breaking shit and very very snotty cries.

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On my first day back in Zălanpatak I received three rather unexpected and profound responses:

Margit said: pray out loud and pray a lot. God will hear you. Go about your day as if the cancer isn’t there. Don’t think about it, don’t pay attention to it don’t talk about it. If you focus on it you feed it. Eat well and only natural produce.
Lotzi said: take care of yourself. Don’t look outside for anything. It’s all in there. You will, your motivation, your love. All you need to live is already in you. Everything can heal.
Neighbour across the road: a friend of mine had stage 4 cancer. She is a doctor. She went to Tibet. She had three healing sessions there. I can give you her phone number.

Ehmmmm.
I recognize many Buddhist, shamanistic and new age healing modalities in the way they approach this. Do I suddenly find myself surrounded by living mystics. Ones who rarely, or never, leave this village…

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I have been so preoccupied since with material concerns like making a comfortable space, cleaning all dust, cleaning and stocking the fridge, pulling weeds, and yes there are plenty of moments that cancer drops away.
But my nervous system still thinks that forgetting about cancer is unsafe.
And when it re-enters the stage it comes with a physically unpleasant shock.

I had in mind a spiritual retreat here.
Which I don’t think can be practically combined with the other things I need to do.
My inner voice keeps repeating: HEAL WHERE YOU ARE.

So I am sort of ok with that.
I am adding lots of good stuff to my diet.
I am doing inner work.
I am spending time with nature.
I breathe the absolute best air we have in Europe.
The constant trickling of the stream is like some natural ambient medicine.
I have my plant tinctures, my prayers and meditations.
It’s good.

This is the spiritual-embodied paradox I live inside. Both soil and sky. Both nerve and prayer.

And most importantly I am alone.
And I feel free.

Even with the traumatic events haunting this specific place I feel free.

Free but not clear.
I have no idea what I am doing.
I am making it up as I go along.
I don’t know the outcome of this.
Will I heal as in get rid of the mystery mass the way I did before?

Or will healing this time mean living wholly and fully with this in my body?

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In 2011 my parents’ neighbour was dying from cancer.
We never talked about it.
We talked about many things like how to make walnut liqueur or what I was making for the Christmas fair to sell so my friend would have some cash to do volunteer work in Romania.

I didn’t know what to make of that.
I know now it’s none of my business to make anything of that.
Just because we both had terminal cancer that doesn’t mean we were going about it the same way.

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Albert Siebelink

I lost friends to cancer over the years.

Chris died.
Beautiful Chris who kept insisting that our terminal status wasn’t real.
That we were cocooning to soon erupt as butterflies.

Albert died.
Albert died while still dreaming of moving house.
He still had life in him, even after losing both his wives to cancer.

I can’t talk about Albert without a lump in my throat.
Stunning soulful Albert.
The founder of the international gypsy festival in Tilburg and the best friend anyone could have.

At his last festival he did the most generous thing: he secretly invited the Marian Badoi Trio to come play.
I was always talking about Marian, a Romanian accordion player who I had met in Avignon when on pilgrimage to honour my dead aunt. I visited the places where I knew, at least there, she had known happiness.

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I am not afraid of death but I hate having to do without people I love. When I say “see you on the other side”, they smile and say “stay there, take your time, time doesn’t count anymore on the other side.”

It of course matters very little how they leave, but cancer comes with a very particular head fuck.
Life feels so very different after you’ve been told it’s running out.

Before in my country we couldn’t deal with death.
Not in the context of cancer.
No because death would mean defeat.
It meant you had lost the battle.

All cancer campaigns are about “beating it”.

Fuck that.
I would love a cancer free world but I have a sneaky suspicion that it’s not surgical innovation, genetic experiments and big pharmaceutical leaps that are going to give us that.

We have created incredibly toxic environments, systems and lifestyles.

---

So in the meantime we are all in this boat together.

The Dutch statistics are pretty dire so nobody should be surprised by a cancer diagnosis.
Of course everyone will be.
And that’s ok.

It’s human to not match reality with your expectations or vice versa.

There are now campaigns about the end.
And how to live to your last breath.
Palliative care can be discussed, and yes we talk about euthanasia too. Which reminds me that I have to update my living will. Knwing that if I take after my grandfather in more ways than one, I have to give every careful consideration to my own conditions and concessions.

This is where my role as witness comes in. I don’t moralise. I stay. I see. I say it.
This is what it looks like.
This is how it feels

To not just have the memory of this, but the moment to moment experience myself too.

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My uncle who recently passed away was a relentless optimist whose primary life force was love and taking care of those he loved.
He made it through bowel cancer in unfathomable ways.
Literally mind boggling stuff that blew oncologists’ minds.
A lot is possible.

But not everyone gets to live that.
Chris didn’t.
Albert didn’t.
And a few others didn’t.

I also have friends who had breast cancer, blood cancer, bone cancer who all made a full recovery.

Living and dying isn’t the distinction.
It’s how we go about either of those our way.

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When I read Beck’s post all that had been brewing inside me for months crept to the surface.

She wrote:

“I read about people who take their life-limiting diagnosis in stride, who are thankful for all it has taught them, who don't think about what lies ahead because they are fully living in the moment. I read their posts or hear their podcast interviews, and I wonder three things:

Is something the matter with me that I can't maintain a constant joyful demeanor, or maybe even more accurately that I don't want to maintain a constantly positive demeanor?

Do they feel as fucking awful as I do? Are their bodies experiencing something different than mine? They can't feel as awful as I feel physically and maintain that kind of attitude … can they?

Are they lying and/or hiding their hard moments, the times when life is DARK, when tears just don't stop coming, when the pain and the discomfort of it all just becomes too much to bear?

I don't know the answers to those questions, but I do know this. That isn't me. I'm not happy I have cancer. Has it taught me things? Sure. Do I have a different take on life because of it? Absolutely. Would I trade all of those life lessons for another 30 years of life? In a heartbeat.

I often hesitate before writing negative posts like this one, and I have deleted many drafts of posts like this, because I know they aren't popular, but this is my reality. Maybe others can see nothing but beauty in all of this, but I can't. If I posted about the beautiful walks I take, the positive interactions I have with people, the heartwarming lessons I'm learning and didn't include this, the reality of the dark times, the tears, the discouragement, the difficulty of just putting one foot in front of the other, I would not be giving you a full picture.

This is my life: the beautiful, heartwarming moments, and the gut-wrenching, stomach-churning, hard ones mixed together into the tapestry of my life.”

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It resonates because I am also not of the opinion that cancer has to be this moment of enlightenment after which we float through it all like some ethereal consciousness.

It’s not a human with cancer’s job to absolve and atone and rise above it all to be some beacon of hope. I am not here to “inspire you” and especially not by pretending cancer is “the best thing that ever happened to me”.

There are days where I curse everything.
Before cancer I had no idea the bouldering rage I am capable of.
And yes we could check that off the “what cancer taught me list” but I may have to smack you silly if you suggest that.

I live my way and it’s messy and weird and hilarious and hysterical, sometimes suddenly even very quiet and peaceful.

But bloody hell it's hard.