“What do you do?”, you say
I know what you want to hear – I am a this, I am a that, I am employed, valid, salaried, PAYED
As you are.
You want me to make sense to you. You want me to be part of the world as you know it.
Yet my full time is being occupied, a long way from your world.
My rewards for effort not supplied in monthly jolts,
numbers appearing with relief that other numbers can be fulfilled.
No, my rewards appear both instantly and never, when they choose.
Numbers appearing with equal relief
Those numbers in my world, are hours and minutes, seconds even
They are kilojoules, heart rates, steps
They are spaces in my calendar filled with catch ups and concerts.
They are moments, of normality – a kiss, a laugh, a conversation
My full time job is my recovery from illness long-standing
M.E as they call it. I am tasked constantly by this demanding boss
My performance is measured by whether or not my body will allow me to move today
My objectives set and weighted by arms of lead
Career plans dictated by misfiring connections in my brain
All telling me I can be no more than I am right now
Not, what you want me to be.
I am sorry I cannot validate your existence by living an equal life
I am too busy trying to find drops of energy lost each day to necessity
My calendar is full. I am booked up until next winter
Try me then. And maybe you can ask me a different question.
People living with M.E may recognise this feeling and the starting question that fills you with a mixture of dread and disappointment as you know the question is only asked with certain answers in mind.
I am not an HR Manager, or a Shop owner, and saying I am Poet and Writer hasn’t seemed to cut any ice. I once said at a party that I was an “evolving soul” which, whilst amusing in a way, lead to a very lonely 2 hours on a sofa pretending to study every single book on my friend’s bookshelf. (Yes this was pre-mobile phones)
Those of us with me that are utterly and kissing-the-floor-in-gratitude blessed with being able to get out and about, either for short or sustained periods, and interact with this outside world struggle with these experiences each day. It’s as if someone wrote inside our DNA that we must be earning our keep in bright shiny pennies (or 1s and 0s now) and if you don’t someone stamps INVALID on your gene code instead. Its almost, almost comical watching the thoughts escaping people when you say something other than I am a [insert job description here] but mainly it is quite sad.
I imagine there are a number of other people that feel INVALID too that do not have M.E. I hear and see you my dears. Your story is not for me to tell but I would love to hear it.
Love and light