I wrote this the other day and wondered about publishing. Three days later I know it is not just a bad day thought. So…
I have pressure in my head.
I am becoming angry about things I don’t like or that I find irritating.
Angry about becoming easily tired.
Angry about wanting to be angry with people.
But I’m keeping it inside.
So the pressure is growing.
I am becoming intolerant.
If I don’t agree I want to say so.
If someone goes on about something irritating I want to tell them to shut up.
Break the code of tolerance and politeness.
But I don’t.
I just keep it inside,
And the pressure grows.
I think I have to be happy and chatty with family and friends.
When I just want to be tired and silent.
When I return home I return to my thoughts about myself.
About what my life is becoming.
About my diseased heart and my diseased brain
Causing me more and more pain.
I get annoyed about it.
That I cannot walk properly
That my back aches
That my chest aches
That I am out of breath.
That I can’t find things
That I get stuck in sentences
That I forget how to do things
That I feel I am becoming unable to keep up
And that before long I will not be able to take part.
When I am out working I lift out of all this.
Forget me and think about doing.
I talk to people about things that matter.
I enjoy casual conversations.
I listen to people about things that matter.
I try to change the world in little ways.
Then I return to my world at home
(Home is lovely but lonely inside my head)
And I go back inside my thoughts and my illness.
And at the moment my world is sadness, anger and defeat.
The proportions of my world have changed.
Before, I was small and everyone else was big.
Now, I am big and everyone else is small.
I see me all the time.
Once they thought the sun circled around earth.
Galileo was tortured and killed because he found that it did not.
I no longer have planets revolving around me.
I watch other people with their worlds, their planets, their busyness,
Circling, wheeling, colliding,
And I see mine slipping away.
And I cannot work out whether my brain disease is getting worse,
Or I am depressed,
Or I am depressed because of knowing I have brain disease,
Or I am depressed because of my brain disease…
It started the day after Christmas
When my children and friends left.
They went off to their planet systems, their busy lives revolving around them.
I stayed behind in my shrinking world.
And I couldn’t face it.
I still can’t.
I just keep busy, going out and working, meeting people, doing things.
At home my iPad is my shield.
I write, talk in email, tweet, find ideas, read…
Anything to keep my mind busy and off
I watch films when I am too tired for anything else
To dull the pain, keep it at bay.
At night I dream in fantasies of my life.
Grossly distorted memories
Some ugly, most unpleasant.
And I awake to my brain disease again.
And I wonder whether I will enjoy living again.
When I write the pain goes away.
The thoughts fade.
I make sense of it all for a while.
And I get back on my horse.
And when someone reads me and says
That was really interesting
I fill with pleasure.
(That’s not an invitation for gratification
By the way.
Just a truth.)