Sunday Brunch

Beasties, breakfast and bunions...

Tired feet, firy bunions and i dire need of a pedicure. Not the best first bare toe day.

Tired. I am so tired. Not the kind of tired that is fixed with a few early nights. It’s the kind of tired that sits in your bones. That makes you wake up feeling groggy and disoriented, with a body feeling so crushed by the heaviness dreams couldn’t lift. The last couple of days bouts of nerve pain are getting more intense and showing up closer together. Too close to leave enough of a gap for me to catch a breath. I also feel “inflammatory”. Don’t go, duuuhhhh, dude you have cancer. If that isn't inflammation then what is?

LAST NIGHT

It’s 02:30 woke up an hour ago in a sweaty panic. What a volatile week. Up because of the good weather. Up because dad and I went to the Turkish butchers for merquez sausages. and came back with a leg of lamb. Up because on women’s day mum insisted on buying four boxes of violets for the garden.

Down because of the pain in my body. Down with the realisation that I have been talking about the “state of the world” too much. Down with the memories of loss. Last year took a toll. I know repeating it will not make it any better. But I need to acknowledge it, even if others don’t. I am not done mourning.

I stroke Puss Puk and decide to watch a movie on prime. When I am about the fall asleep I hear Chocolat cough. I go downstairs. She is antsy. She needs to go out. We missed the evening walk because of fireworks. God how I have come to loathe fireworks. There is nothing remotely festive about it anymore. It’s scared dogs and sleepless nights. Fuck of f with your fireworks (which means fuck off Go Ahead Eagles, the local football club).

The dogs are happy. I am a sleep walking zombie. We all get startled by two cars racing past at looney speed, no lights on. Not head nor tail. I look at the bicycle lights clamped to the dog’s harnesses. Carnaval and Disco. Their night name nicknames, as long as the lights are on. When we get home after two big steamy poops there is disappointment. No biscuits.

Before finally falling asleep, I watched the first fifteen minutes of another movie “Bliss”. What an odd movie to pick at this moment.

CANCER AND ALL THAT

I have been amazed at my ability to manoeuvre cancer to a more quiet space, somewhere at the back of my mind. These past days it has started creeping back though.

This coming Tuesday I have an 11 o'clock appointment with my oncologist.

I have an ambiguous, or even polarised view. Faith or fatalism, either way I am extremely inclined to let it be. I am depleted and still only just dragged myself out of depression, but I don’t feel like I am dying. I really don’t feel ill. I also believe my body and I have the ability to stay healthy for a good long while.

At the same time death hovers. How could it not after those words were spoken: “Make the most of the time you have left”. Longevity doesn’t mean that much to me. Quality of life does. This makes me think no surgery, no meds. I do not see the benefits from regular, fixed scans. I want to play it by ear. Only if I feel something in my body is off and warrants a check up, I will ask for a scan. For now, the only thing I am curious about is my white blood cell count. That’s it. I will ask for a blood test.

As there is no curative treatment yet, it is up to me and my body anyway to find a healthy way to live. In the meantime I will update my a) cremation b) do not resuscitate declaration c) explore euthanasia options d) will.

The courage of compassion

Strangely, so far not a single person has asked how I feel about it. I am now wondering whether this is down to my few pre-emptive conversations. I already took a little initiative to talk about what’s on my mind. Or it is because everyone thinks I already have a handle on it and I don’t need any further support. Strange.

Yesterday I wrote this:

‘Why is it so hard to be with someone. Simply hold space. You don’t even have to understand exactly what they are going through. Just be there.

Over the years I have learned:

“You are so strong” is a cop out. It means “thank God I don’t have to carry your burden.”

“I don’t know how you handle that” is code for “I hope I never have to walk a mile in your shoes.”

There are excuses, there is relief. The stronger I am and the better I get at handling the unimaginable, the more others lean back, look away, move on.

The worst one is: “I wish I had your strength.”

Don’t ask for something, unless you are willing to put it to the test.’

Earlier in the week I published a, slightly less cynical, personal essay on strength. Before taking it down, I want to give you a chance to read it as is. I feel it needs a rewrite, as it is not focused enough. It’s been bugging me.

When dealing with cancer the first time around, a good few friends faded or fell by the wayside. It hurt me at the time. Now I appreciate the filter cancer put on my social life. It was a necessary shedding. I am now faced with a new one, I am sure. People I think I can count on won’t be there. Some who I thought were a more superficial presence will all of a sudden come closer and show they care in unexpected ways.

I know most of you will have had similar experiences when going through a crisis. Whether it was a disease, or divorce, losing a job, losing someone you love, you never know in advance who will stand by you through it all.

This sounds more callous and calculated then it is, but I have started to lean back, intentionally. Just to see who will still make an effort when I don’t. Because I can’t. Who will make space for my emotions? Who only comes to me when they need something?

In the past I have acted as the emotional waste dumping ground for people who don’t reciprocate in a meaningful way. It drained me without me even being aware of it. I do naturally take on the role of listener, problem solver, or supporter in relationships. At my own expense, more often than not. Close to stepping into the therapeutic space with a professional role to play, I have to be aware.

I have had to observe myself to see whether I am naturally drawn to people who need support but don’t give it back. To unearth a false belief of what I deserve, so I could flip it. I had to learn how to feel comfortable and not guilty for not stepping into that caretaker role. I also had to take a closer look at how I express my own needs in friendships. I still find myself holding back, at times. Because I think nobody can do a better job in being there for me, then me.

‘I am getting to a point in my life where everything is mine. I own it all. Nothing depends on others. Not my boundaries, not my expectations or what can be expected of me. It’s liberating. I know who I am, where I have been and how I have handled it.And the ones close enough to care will have their own feelings about it. Compassion and respect, I will take. Everything else will have to pass me by.’

I have changed over time. I need less, because I can fulfil more on my own. It is important to express my needs, to let people know how I want to be loved. But I have also learned that in times like now, it should be on me to remind people to care. Sometimes people assume I am "handling it" because I am strong. I am grateful for my own strength, as I would have been dead without it. It has also made me not have time for people who don’t step up until or unless they’re explicitly told. It is not my job to make you care. So, step up, or step aside.

MY SPACE

I do very much need time off. I still crave that silent Sanctuary. A place to stay to heal (for three months at least). Somewhere I can shut out the world for a bit, not be available. A place and space where it is only my body and me, and the presence of anything or anyone with healing properties.

I don’t know if my conversations are just an inner dialogue, me talking to my body, or talking to something bigger. I genuinely don’t know. All I know is that whoever I am talking to has a very different tone of voice than I do. Much sharper, void of any sentiment, direct and I have to say, somewhat ruthless. God, body, or alter ego, I enjoy our chats. I like being told: Trust me. But I am also being told: Take better care of yourself.

That is why I don’t just need the sanctuary, I need to change my diet, my lifestyle. Bring my juicer, stock up on organic fruits and veggies. Meditate, nap, pray, detox, and write. I am making myself less and less available to prioritising my healing, my writing, and learning. This is the more naturally dynamic way to lean back, instead of the “testing” kind.

But where to go? I have been looking since last November. I know a lot of people but nothing has come up. I am dreaming of that archetypical cabin in the woods the way I see in American tv series or movies. Although those are usually also the ones haunted or used by serial killers. Either way, you end up dead. Which is the exact opposite of what I want.

I want life.

RELENTLESS OPTIMIST

I read something with my morning coffee. Again it is about “the state of the world”. Not today, thank you. But the Karl Popper quote on the moral obligation of optimism lingers.

I am a relentless optimist. It’s in my belly, it’s in my bones to be an optimist. Now I need to choose which one. Am I the Simple Optimist (of the belief that things will turn out well), a Pragmatic Optimist (things can turn out well, but it requires action and effort) or the Resilient Optimist? I have the ability to hold onto hope even when faced with hardship, not because I ignore the bad, but because I refuse to let it define everything. But please, stop testing me!

I have my third coffee and eat my breakfast, watching the remainder of Bliss.

Selma Hayek: ‘It is amazing to see how easy it is for humans to get used so quickly to something so spectacular. They say ignorance is bliss. But I say: You have to experience the good, to appreciate the bad.”

Owen Wilson: ‘I think it is the other way around.’

Selma Hayek: ‘Exactly’.

I think Hayek meant it exactly as she said it the first time around.

Something for you to ponder on, this sunny Sunday.

Love XXL