Snow White…

The fatigue is often other worldly, off the spectrum of tiredness it doesn’t require doing things, in order to perpetually exist and it isn’t cured by rest.
It aggravates other symptoms, and rubs off the platform for flexibility and resilience.

It comes without choice, and just is. There is no gtting better, there is simply management.
A mask is required.

Mostly I adopt masks of normality, so that I can show up and steer the focus, without reference to the ticking time bomb inside.
How many people would choose to spend their weekends inside, for months on end, in perfect weather.

I am traditionally awful with cabin fever,  a feral nature child who would rather be outside everyday than anywhere else. But here I lay.
It takes such endurance to follow your body where your mind and body would prefer to never have to go.
Mix with this the psychology of knowing death is potentially always at your doorway. Forever practicing putting as much distance between myself and it.
Anticipate feeling shit or imprisoned by my body has incensed me to discover and build practices in mapping and navigating challenging scenarios.

I am especially grateful the capacity to laugh through the pain remains.

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With friends like these…

It has been oh so revealing of relationships.
I’ve become aware of those that are founded in pure self interest, and those that embrace a deep and embodied mutual empathy.
Unfortunately the majority seem to have been forged in the prior, so indeed, there have been loses. Deaths in my heart from judgment, or dismissal, which is beyond my will, or even my safety, to entertain.

And deep, warm, soul-moving care, those who can see through the changes in circumstances, going ever further to see past my façade, to ask the very simple question “what do you need?”
The answer?
Literally, just the question.
Equally as I would like to ask it.

With loss, there is too deep gain, and clarity.
The loss has been perpetual And loss begets grief. There is a continuous, not ever present, but continuous cycle.

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Obstreperous Soul

The verbose thoughts that rattle through my mind, verisimilitude, like a apocalypse rendered skyline
How is the subconscious thought so powerful?

The demons that scratch and claw at my insides, desiring to tear me down, become too tangible. The pain, the angst, it compounds.
How I yearn to let some go.
If I release the thoughts and feelings onto paper, can I still hold the power? Or will externalizing the internal have a diminishing influence.
The pen screams things that I wish for no one to hear, so the voice goes unheard.

In solitude are words spoken heard?

Keeping the prose within the confines of my mind spares the reveal. If I were to make evident my hidden truths; how it felt, how it feels, my antiquities, if the words were to leave my mouth, they would add a vocal measure to the perpetual build up.
Will forcing it into the open, metaphorically free the truths into the air.

I’m so reticent to share, to disrupt the mainstream narratives, too strong and stressful a tide to swim against in casual conversation.

Can I face what is inside more than just sitting here, no solution, no compromise.

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There is nothing to fear, but fear itself.

“I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. and when it has gone past, I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.”
Frank Herbert – Litany against Fear

Life has taught me this, what it means to only face fear, allowing it to pass through, leaving only a resilient being behind.

I confront fear daily, it has become an old friend, or perhaps foe. One I can pick up, and sometimes, in the most auspicious of moments, put back down.
But all too often, it is lying just out of sight, barely below the surface. It’s a web cast full of the unknown and unthinkable.
There are times I wish to be reassured that the maker of this web can not bite me, that the spider in the corner can not catch me.

Not even the darkest silence could ever quiet my mind, im most unfortunate that way.

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Life, or something like it.

Life. At times it is a self-violating act.

I partake not nearly as abundantly as I would like to, be it not for lack of trying.
Too often it feels like I am living in a split reality; the external and internal worlds co-exist. Both so noisy, both so full of justified needs, but ones screams are amplified with a much greater intensity.

I have my strengths, I have my priorities, they fuel me for different reasons.
I have less opportunities now, but I map them strategically, intrinsically, so I can afford myself those small moments. Moments where my energy is directed towards frivolous things, things of deep value.
Acts engaged upon just for the simple act of fun can be of a cost too great, and I sit here broke.

I guess my shape of fun exists differently now.

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Alone in the crowd…

I will never understand this mentality, the assumption that similarity in disease will automatically lead to the formation of a bond, a deep personal connection, like it is a pathological right.
I have never felt that way about any of the other patients, not the ones I have shared rooms with, nor those whose journeys I’ve stumbled upon online. Why should I?

I wish not to be close to them. I am far too aware of the risks that would involve. Losing them, opening myself up to intense feelings, sharing, and the fear that comes along with that. Being reminded all too often that their decay will one day be my own fate too, and their improvements; something which I will never get to enjoy.

They connect far too intensely, I am far more cautious.
I wish not to make connections formed upon the one thing I despise most in this world.
I wish not to be drawn into that web; the one where I develop the need to know how they are. I wish not to have them on my mind, I wish not to become immersed.
I wish not to be sucked into yet another situation where I know I have no control as to how it is going to end.

And so, I will always sit in these sterile cold rooms surrounded by similar individuals, but immensely alone.

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I’m Fine. But i’m not fine.

I don’t know why it has hit me so hard; it really should have come as no surprise when my test results came back with the worst outcome possible. I don’t believe I have a dark cloud following me or even that if something bad is going to happen it will necessarily happen to me. It just seems, especially of late, that if there is a particularly challenging way for something to get done, that is the route upon which I stumble. Sometimes life just isn’t happy, or easy, sometimes it’s just fucking awful.

I guess if you look at this in terms of either cancer wins or I do, that puts me in a good competitive place to not even consider losing. I’ve always been a statistical outlier and that’s been in my favour in the past. But months doesn’t feel right, it just doesn’t sit right, on more than an emotional level. It just isn’t going to happen and I’ll hold onto that for as long as I have to.

I would like to be able to sit here and say that it’s not affecting me on more than just a physical level, but it is and i’m terrified that i’m going to scar the people around me.
I’ll readily admit It wasn’t my proudest moment when I lost my temper and took it out on the door of the pretentious office where they thought they could just sit me down and tell me what to feel, but I just couldn’t take anymore.
They seem to think that mentally and emotionally i’m not approaching things in the right way, that i’m not taking it seriously enough, that I should be breaking down in their offices and needing them to put me back together. That it’s abnormal that I don’t bring a hoard of people along to my appointments.
Why can’t they just realise that I get to choose how I deal with things, I get to choose if I deal with things. I get to choose if I wallow or if I let things go. I know how capricious cancer is, more than anyone should. I know I am a walking time bomb but that doesn’t mean I want to sit around considering my decrepit future, obsessing about or planning my end of life.  Sometimes all I need is for someone to look me straight in the face and say, “this is fucked!.”

I know it’s not going to be easy. It’s not easy. And I’m definitely not thinking that it isn’t a big deal. And somewhere deep down inside of me I know there will come a time when my mind slows down, and when that happens im sure I will be in for a breakdown. A huge one. It’s the way that I’ve always dealt with things, highly functional in the midst of a crisis, good at compartmentalizing when I need to and getting things done. And then sometime in the future, maybe months, possibly even years later, when the dust has settled everything will come flooding out.
It’s a coping mechanism, a defense maneuver – one that im not even consciously trying to deploy but that just automatically happens. My current way of handling things is to process with language and to feel anger. It’s just me and that is the way that feels right to handle things at this moment. How can that be so wrong?

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