I’m documenting my journey. 2020 is honestly proving to be a rather challenging year and I need to make sense of it in my head.
I’m lying in bed as I write this. Nearly 11am, still in my pjs with the electric blanket on. I feel the cold so much. I have so many days like this. It isn’t depression, but a need to feel cosseted and safe and away from a world gone mad. But that is a story for another day perhaps.
Last week I was told I would need surgery for what the dermatologist and plastic surgeon pretty much thinks is a squamous cell carcinoma on my right nostril. The growth started off as a tiny little pimple, painful, but tiny. Within three weeks it has grown significantly and had turned crusty, and bloody in parts. It is now large, but not huge I guess, and it will need to be excised and a reconstruction will be needed which will require a flap from my cheek being used. There will be scarring.
I am terrified.
Of both the scarring and of dying early.
I am 52.
My great grandmother died at 57.
My grandmother died at 60.
My mother died at 62.
I am autistic. I see the pattern.
My brain is in complete shutdown.
I feel like I am on borrowed time – I don’t want to die early. I desperately do not want to die early. I don’t want to die before I have fully grasped my autism, before I have travelled, before I have come to learn to love the body I inhabit, before so so many things.
I have spent 7 days crying intermittently. The fear grips me and I have no control over the leaks.
I am exhausted. Fear is exhausting. The stark focus of mortality is exhausting.
My brain is in shut down and I am wondering around the house filled with a hollowness in my soul.
I hug Finley and Cameron and I wander how many more hugs I will have.
I wonder if I will ever get to live in the UK, the land of my birth that I miss so much.
I look at Jess and Jordan and try to remember how it feels to squeeze them tight and to drink in their love.
I snuggle into Dave’s chest and feel my chest tighten into a vicelike grip at the thought of not being with him. I cannot breathe.
This is how my mind works.
I have a single, totally treatable growth, and yet I am planning my own death.
This is my autism.
I desperately try to shake the thought from the branches of my brain. I do not want a self fulfilling prophecy. I want life.
Yesterday, a sore developed on the inside of my mouth, underneath my left far back molar. Every time my tongue moves, the pain reminds me it is still there. Immediately I wondered if it was another cancerous growth.
This is what cancer does. It robs you not only of life, but the freedom to live what little life you might have unencumbered by death markers.
And I haven’t even had it 100% confirmed yet.
Fear has been my bedfellow for many many years, but this, this is fear on a whole new level.
Oh my god, the tears.
I’m watching “Where the Wild Men Are” with Ben Fogle. I look at those brave people and wish I could break the binds of my own conformity and find somewhere to live life on my own terms. I want to be free of the slave track of mortgage, income, social rules.
I have been asking myself if it is better to live a short life on your own terms or a longer life on society’s. It sounds like an easy choice. Family complicates it.
Throughout history, I have found, most people who were remarkable, adventurers, trail blazers, they did it at the expense of their families, or not having one. Even Buddha.
I can’t do that. Love defines who I am, and I love my family too much.
But that love comes at a cost.
A restless soul.
One life, that is all we are given with any certainty.
Do I leave, live life selfishly, simply? Or do I stay, treading the slave path, with my family.
I see their faces in my mind – there is no bottom to the depth of love of I have for them. There isn’t anything I wouldn’t do for them.
And so I must reconcile my lost soul to the conformity that revolts me so much. I must shackle myself to the chains that bind us.
Life is short. This is one irrefutable fact.
Choose wisely, live it well. Break free if you can, and if you want, for not everyone wants to be unshackled. The Matrix reminded me of that.
Tuesday is the day of the surgery. A day that looms over me. Everything is in suspended animation until the growth is cut out and I know for sure. I have no idea the path I will be on until that point. The uncertainty is excruciating. I am autistic after all. Fear and uncertainty are the things we try to excise most of all.
And so I sit in bed, warm, tired, and slightly hungry if I am honest, trying to will away thoughts of an untimely demise. The irrational dragon snapping at my ankles. Am I screaming with no sound?
Perhaps I should have a nap. Perhaps then I might awaken to a new view, a brighter view, a view of a warrior ready to do battle.