creative writing, Gratitude, Hope, M.E, mental health, Uncategorized, wellbeing

The place where words don’t work

“The place where words don’t work”

This powerful line is one of many exquisite literary morsels that I uncovered in Donna Tartt’s novel The Goldfinch.

This particular phrase, a good hundred pages in, was one I particularly savoured, even with its ironic bitter aftertaste. A place where words don’t work. Why would someone who works with words ever want to visit such a place? How could a person ever recount their experiences there? To articulate without language, surely that is a paradox.

I questioned, I reflected, turning the phrase over, examining all its edges. What would I do in such a place?

Slightly disturbed by my examinations I set it aside and came back to the world. However this powerful prescient phrase came with me.

On Wednesday last week I woke up and felt…well that was part of the problem the word for what I felt was gone. In fact quite a few words were gone. I tried to communicate this to my husband and it felt like I was dragging each thought along till it was able to leave my mouth, trying to claw its way back inside. Each separate thought and corresponding word was unwilling and unco-operative, often hiding behind a door, unlocked but stiff to open if I could open it at all.

I was in the place where words didn’t work, forgetting in my reflections that it was a place with which I was already familiar, a state that people with M.E (like me) call “brainfog”

I have no idea how the peculiar term “brainfog” came into being but knew it immediately. I called it “scratchy brain” for reasons explained above. I still have it now as I write this, not so bad but it’s there. It’s not always the symptom present when I have a setback or relapse which happens either when I have overdone it, or for no reason at all. Mainly it’s the fatigue that floors me but occasionally the brainfog makes an appearance.

The fatigue I can deal with. Tired, exhausted, shattered, broken, depleted, there are lots of words I can find to describe how utterly garbage I feel but when I can’t find the words or even get my internal thought engine to go off and find the words…I blue screen. (Here’s an example, I wanted a verb, a verb that had the exact resonance to my feeling and the one I wanted was no longer there, thank god for pop culture references)

No doubt there are a number among you that think this happens to you but I am not talking about our modern dis-ease of information overload and the odd brain-fart, the experience of brainfog is worried-for-your-mental-health scary. Simple cognitive processes, like counting out money to an increasingly impatient shop assistant, become complex quantum level computations, numbers and words flee out your brain (I lost the number 6 once) and conversations become linguistic gymnastics, each word carefully chosen (from what remains) and strung together hopefully in the right order. That in itself is knackering and is often the cause of us M.E folk shutting ourselves off from human contact. Answering questions like “How are you feeling today” just feels too vast a world to cross.

So sometimes we are forced to exist in a place where words don’t work, and more than that, where thoughts are in jeopardy too. It’s a place of pure feeling and that feeling is literally indescribable.

In softer moments there is a peace to that for me. A place of silence and purity. A place before language. Usually this is achieved through meditation not M.E at a time of my choosing and not at the whim of some cellular malfunction.

In darker moments it can be terrifying. I am cut off from contact. Ostracised by misfiring neurons. Not only can I not communicate to the outside world what is going on but I also cannot communicate to myself. I just…feel…and with no apparent language to discern one feeling from the next it becomes a swirl of unruly unclaimed sensations which expand and occupy my form completely.

One experience perfect peace, the other a perfect storm. It’s hardly a surprise that M.E comes with a side of depression and mental anguish, this is one of the many reasons it can be misdiagnosed and it’s definitely a huge part of why it is misunderstood.

Living with a condition such as M.E, with its irreverent episodes of brainfog and fatigue, is a constant challenge, and as an aspiring writer, one that will test me in more ways than I had in mind. (pun intended)

But, however, and nevertheless, I am not going to give up. It is time to get used to spending time in that space where words don’t always work, the place before language and be at peace with what may lie ahead. Foggy or sharp of brain, I have a feeling both could be useful to develop my own particular style.

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