Living Daily With Death
The inability to live your old life, compels you to find another one.
I used to have a pretty wild life.
Living as a multi-millionaire lawyer and businessman. Loving as a porn producer and actor. Lime-lighting with the Loaded girls. Those were days gone by.
Then 7 years ago happened, and what doesn’t just seem, but is, another life ago.
I’m lucky in one way. It wasn’t a tragic accident, smashing suddenly out of the casino of life which laid me low. It was the accumulation of myopathies going back 20 years.
Western medicine had ceased long before that to hold out any holy grails for recovery. Homeopathic and reiki work was providing a sticking plaster. Then, one pressure laid upon another, and the spring just burst.
It was sudden, in that sense. You don’t notice the transitional state from life competencies to the opposite. But one day, you sit at a desk, with that burning in your head. A cold burning. Filaments made of ice pressing against your skull, your eyes.
Your hand trembles around a coffee cup. The aches and pains which no massage can relieve come to accompany every drawn breath. Food has no taste and your stomach has ceased to function.
The last thing you want to do is draw the curtains on everything and walk away. You are so invested in that world of your own creation. But without a self there is no You at all. You have to shed a painful skin, and sit breathless and bruised under a new dawn.
It was months later that I had my first MRI brain scan. I asked what the snow scattered over the grey matter means. Dead cells. Brain cells starved of blood oxygen. They never grow back. The cells that hold your memories, your senses, your language and your logic.
A cemetery of cells which would grow larger, inexorably, year by year. As the brain mass itself, shrinks. Increasing tombstones in an ever-reducing plot.
To think of what I can’t do, anymore, is to think too many things. Let those thoughts become wishes, and that can become a self-induced torment. A glittering shop window of life, with no entry door.
To consider that each day could be the last. Vasculitis narrowing veins slowly. Then with the slight force of a butterfly leaving a leaf, a maelstrom brewing, rolling across the brain. To an end foretold in magnetic resonance imaging.
You’re aware of the waking pain. Of your arm insensate, so that it needs to be lifted into life. The several failed attempts to sit up, get up. The buzz and ring of focusing, as machinery already rusted overnight seeks to activate.
The careful foray down the stairs on legs not yet quite fit for the purpose. Coffee and nicotine yes, for breakfast. Food an impossible journey until a later way-station in the day.
The desk, a friend waiting. Waiting for words. Which come in rain showers, mis-spelt and chaotic. Ideas in there like larks in a thunderstorm. Fingers reaching for keys. You see that letter and you will your fingers to tap it. Sometimes they do. Sometimes you find surprising anagrams hidden in the dyslexia of your manual indexterity. Soon, or maybe later today, the pain comes. Creeping along the arms, crackling spiders of neuronal interference in muscle responses.
Around the house, you practice an economy of movement, almost balletic in its spacicity. Ever extra step is one which must be paid for later.
In warmer weather the golf, yes the sport of princes. Except every day I abdicate my title. There’s no muscle memory. Each new day I pick up a club, I have to learn again how to use it. Then after some shots, the muscles spasm. The grip fades.
A walk perhaps. It distracts from the hot red ants ever chivvering at my feet and legs. The body frame stuttering like a badly damaged Terminator skeleton.
Food, as if brought by the harpies. Filling the eyes but not the stomach. Tasting of nothing, in a sensation of drowning. You would as well dine on mustard gas.
Work on a new music track. But quickly. After minutes, the finger hand is too weak, the plectrum hand too febrile. But get a chord sequence or a melody down on tape. Because tomorrow when you listen you’ll have no memory of it. And you have to learn how to play it all over again.
Your editorial collaborators pop up, asking what you meant when you typed the things you did. You look at it. The words float like balloons untethered from their own structure. Sometimes, you have just to admit that it means less to you than it does to them. Try again. Another day.
But now, begins the journey towards sleep. A long trek, with many mis-steps. Something perhaps jars a memory, a resulting cascade of electric-neon thoughts bursting through eyelids heavy with the day. Then perhaps an hour, perhaps ten. You never know till it’s over. Then waking to live another day with death.
Yet these words are the dark wrapping paper around a rainbow of small joys. A smile made to play each day for every blessing counted and affirmed.
You are not lost to walk the path to destiny foretold. Only if you turn your back, avert your gaze and seek to live where your life is not, and cannot be. Perhaps a pocket pearl of wisdom.
