With ME/CFS, sometimes I get a whole day where I wake up, go through the motions of starting my day (get dressed, make a pot of tea, feed the cats), and then I sit down … and the day just goes. I’m not watching telly, or doing anything. It’s like I stopped existing for a day. Or time stopped existing. At some point I “switch on” again and realise the house is dark and I haven’t drunk anything. I haven’t eaten, or spoken. The day is gone. I wasn’t asleep. I remember it. I didn’t occupy the day the way an animal does. I occupied it the way a tree does.
There is nothing unpleasant about this (aside from when I “come to” and try to move, or the first thing I drink, which sends a knife through the roof of my mouth). But during it, it is a weirdly pleasant no-space to be in. My body tingles, but is impossible to move. If something interrupts me in this state, something that requires interaction, it’s agony. Like my entire soul is staring directly at the sun. If I try to move I will be incapable of any coordination: I will fall over, as if my limbs are badly wired to my brain. If I try to speak I will find the wrong words: mushy, soft-edged.
A full day of it is unusual: quite often this happens briefly, for a few seconds or minutes. My dad has seen me drop into this state when he visited me. He said “Your eyes were open, but you were not there.” A second later I was fine. It is possible that this is unconnected to ME/CFS, but is actually an inherited tendency to petit mal. I can’t be arsed to find out.
I wrote a poem about it, it’s called “Absence”, and I just found it in a notebook. So here it is:
The tea goes undrunk.
The day rose to dusk
then sunk past it. You forgot
to turn on the lights this morning.
There is no thirst or hunger,
no want, no person to want it. The tea
goes undrunk: thoughts
not thought, the sounds of words
alien, the light falling on your eye
it could be anything.
A visitor, a house fire.
All is quiet within.
Disconnected from a power supply
a world goes into standby.
It is the desert, no thing
a billion billion grains rolling -
the meaninglesness of all things
the weight of all things become
make seamless sense, are home.