Please note, this video contains mild swear words.
I wrote this poem in the summer of 2018, around the time of my re-diagnosis of ME. I was in a pretty dark place, however I think it helps highlight how terrible this illness really can be and how it impacts on those of us who live with it. I’ve recorded it here for ME awareness week 2019.
THE WILTING WAY
Too many steps. I’ve gone too far. Enticed beyond my boundaries, an invisible bungee hauls me back, makes me crash. Tortures beyond my limits. My pack is empty yet heavy, holds nothing to sustain my walk. The journey is no longer the bright sun-dappled path, no longer the winding and peaceful summer’s climb.
This is the wilting way.
The wilting way is the fork in the trail I did not choose, the dark route with an alternate destination. The wilting way drags me to quarter-life and fractions reduced. The way looks covered with roots and boulders and very wet moss. There is music in the trees but it’s garbled and dross, taunting as I long for the hymn and the song in my heart, it fuses with the downpour.
The wilting way closes in. Perhaps if I’d done this, or rested like that, I’d still be on that steady warm path… But somehow the wilting way was always going to find me, like an escape from Alcatraz, I’d always be back.
It’s brought me to the caves this time. I’d gamble against this, take another hell instead, but the odds were never in my favour and the caves were always reeling me in. I could hear them in the bitter tone of the music that’s incessant in my head, feel them in the fizzing feet and in my wrinkled fingers, like old age, enthused and coming to greet.
The caves echo, even repeat my empty cry. I’ve come too far this time that I’d rather have the darkness, it hurts to walk in light. The occasional shafts of sunlight attack my every part, I’m crawling on my knees this hour and the mud and bat shit fill my lungs, oh what a wretched sight.
Don’t give me twee platitudes as you watch with your smartphone and vice. Don’t speak down to me with sympathy, this was not my bloody choice. Don’t tell us we’re not worthy as you picnic on the heights. Come, sit in the bat shit and stagnant water and try and understand this plight.
We professionals with first class honours aren’t lazy, it isn’t in our mind. There are others who didn’t even get that far and have existed only in their beds.
There’s a black spot on our hands and the exhaustion came as if by spite. So come stagger with the missing and find us in these caves, truly see us in the clarty mess, listen to how we got here and furnish us with grace. If you could help us out a bit and off the wilting way, we would join you on the mountaintop and revel on that day.
(photo from a mens walking weekend up Kinder Scout in the Peak District in January 2015)