My thoughts flowed, away from the task and towards the nagging dilemma at the back of my mind; where did I go?
Thirteen months have passed since the words where did I go? scrawled across my desk jotter were conceived. Later added to my journal for safe keeping, I didn’t know what it all meant at the time, but they meant something, and desk jotters had a way of making their way to the rubbish bin once filled from edge-to-edge.
I had written a poem. It came from within whilst I was working on another task, an inner voice speaking to me in hushed utterances, measuring my soul with rhyme and riddle. I thought I must be depressed, and anyone would likely have assumed the same because life was grey behind my dulled eyes. The joy was bleached out of my movements, sense didn’t make sense anymore, and I began to resemble a sepia-toned version of myself.
A question remained: where did I go?
In the few months that followed, that dullness would be met with dolorous intensities so cruel and unrelenting that I believed my body must be preparing to make an otherworldly entrance. Pain would radiate across my skin like the Devil’s tongue licking at my flesh. Corporal fireworks would create miniature explosions coursing around my body, some on the surface, others deep within my joints and bones. Hot white knitting needles would be plunged up my arms from my wrists to my elbows. Spears would penetrate the top of my skull through to my spine, pinning me to the floor. The mass of our atmosphere weighed heavy as gravity pulled me to the ground as if I was chained in irons and paying penance for my crime of existance. Headaches so intense I could only believe that my brain was being tightly cinched by my torturer’s belt. My gut clearly in distress as it failed me, time and time again, unable to work according to the manual of digestion. My heart rate dancing and racing when standing was required, whilst feeling as though the weight of the world was being carried across my shoulders, pushing me feet first into the earth.
My days begain to pass with little movement, little thought, lots of pain, lots of silence, lots of darkness. Talking hurt, my lymph nodes swelling and aching in my throat, my tongue parched and dry, my teeth aching in their gums. My memory became thick treacle: words, names, dates, events, places, usually anything of note disappeared into that murkiness and there mostly remained until their need had passed. Trying to follow a conversation became a clunking cog-turning sensation within my head. Processing information hurt.
I could feel myself disappearing into a nothingness, and a memory of that fearful childhood darkness of ‘The Nothing’ from The Never-Ending Story found life as an apt descriptor for my situation.
Where did I go?
They call it ME (Myalgic Encephalopathy). Some call it CFS (Chronic Fatigue Syndrome). I’ve taken to using MEcfs to highlight the unsatisfactory nametagging that persists. Once we get past the naming of the beast, we discover a condition so peculiar, so extraordinary, that there is no cure or even adequate research or support in any country in the world. It truly is a nothing of an illness. Rendering a whole person to nothing more than the sum of the pain and its parts. The benefactor of the title disappearing into obsolescence, no longer required by a society that neither accepts them or cares for their re-emergence.
An illness remarkably welcomed by psychotherapists of all colours who will sell their thoughts of your situation to you as nothing more than all in your head. The mind-body connection. If you think it, you will feel it.
Irrespective of all of the different opinons of scientists, psychologists, clinicians, doctors or therapists, my decline hadn’t come from a depression, it hadn’t come from negative perspectives, being angry or fuelled by ambition and overdoing it. My body was capable of so much, it had shown me as much over the previous decade of my fighting: fighting sexism, agesim, stigma, my self-confidence, the beliefs of others and the expectancy of a society that clearly knows how to shoot itself in the foot.
No, this was not in my head. This is in my body and it’s devouring the person that I once was. Inch by mortal inch.
The poem, before I forget, was a recognition of my fading existence at a time when I still believed I could conquer the four corners of my country by the plight of my own physical strength. But, even as my body, my essence, my mind began to de-construct into an alien form, the poem was trying to warn me of what was coming. I didn’t ken its meaning. How could I possibly know that I would be a candidate for MEcfs? That thing that happens to others. That unmentionable, perhaps unfashionable, condition that means people sleep a lot and most likely just need some rest in order to get better again.
Over the past thirteen months I’ve become aware of what it means to be a human with a chronic condition, a human who could explore and achieve on a whim but now only hopes to get through each day without the pain of a thousand rhinos trampling my skeleton. I’m still learning to accept that this condition may last for the rest of my life, perhaps another thirty, forty or fifty years. It could equally abate and allow me some temporary relief to feel alive once more.
In this shadow, I can see that there are researchers, advocates, even just a few politians who are fighting what it means to have MEcfs, and what it means to no longer have yourself. I feel deeply grateful to them, because there is nothing I can do here. I cannot go for a ridiculously long run to help raise money for the research. I can’t cycle the four corners of my country to raise the awareness of the forgotten people. I can’t even consistently perform any creative or administrative task that might mean I could retrieve some of the financial independence I had once laboured.
Nonetheless, I still try. Every now and then I can create something worth sharing on my Patreon page. Or add another design to my RedBubble merchandise shop. Or mention how Arbonne is still a huge part of my personal health journey that I’d recommend to anyone wanting something better, cleaner, greener.
But if it does cross your mind as to what I’m mostly doing these days, I can answer simply: I’m asking myself the question,
Where did I go? The other me that I know.
I’m not a MEcfs advocate expert but sharing related links to ME Advocacy and Research might be of use. You can also find more links to my ME journey on my Living with ME page.