This is a re-post from an original article, which can be found here
On holiday in the Peak District in June 2007, three months after being diagnosed with ME, I sat down one afternoon with a pile of postcards and discovered I could no longer write. The words were clear in my head, but the pen in my hand made only meaningless scribbles, empty scrawls. The connection between them had been severed. It was many terrifying hours before it returned.
This episode was my first real experience of the cognitive dysfunction that’s a core symptom of ME. ME (also known as chronic fatigue syndrome, or CFS) is a neurological disease affecting 250, 000 people in the UK, that impairs both body and brain. It’s a 360 disability. Since 2007, my health has deteriorated – by 2009 I was using a wheelchair, and in 2013 became bed-bound – and as my physical functioning has declined, so too has my cognitive capacity. I have problems with memory, attention, concentration, comprehension and language. I can’t listen to the radio, watch TV or use a computer, can’t hold a conversation for more than a few minutes or read more than a couple of sentences. If you know me, you need to know I’ll forget your birthday, or your married name, or that this time of year is difficult for you because it’s when you lost your father, not because I don’t care, but because my illness makes me someone I’m not. While I was still well enough to go outside, I couldn’t work out money in shops, or judge speed and distance to safely cross a road. These days I can’t coordinate a knife and fork; my husband has to cut up my food.
“Brain fog”, as it’s colloquially known, can be funny. People with ME post comic stories on web forums about slathering themselves in shampoo instead of sun cream, or going to the supermarket without a purse. LOL. Except no, not LOL. For me, the loss of cognitive functioning is the most distressing and debilitating aspect of my illness. There are no aides for this kind of disability, no walking sticks or wheelchairs for the mind. No one can see it. And no one understands it. When I try to explain that I can’t follow what’s being said, that I shouldn’t be trusted with figures, that the internet is beyond my grasp, I hit a wall of blank incomprehension. I want people to know I’m not going crazy, or being rude; I’m just struggling to remember, to form words and sentences, to add things up, to process, in the same slow, stumbling way I struggle to walk. I used to be smart and quick-witted. I worked as an academic. I have four degrees. My brain, and its intelligence, were my main assets. Now I don’t recognise myself. It took me several months, and my husband’s help, to write these 800 words; when I was well, I’d write 1,000 words a day. I bargain with the gods, tell them I’ll stay in a wheelchair for the rest of my life if they’ll only give me back my mind.
It’s the loss of language that’s hardest; being unable to express myself or communicate in the ways I want or need to. I can only talk for ten minutes a day, and when I do I quickly misplace the thread of my argument, or forget what I set out to say. Even simple instructions to my carers can defeat me. I lose words, everyday words. Dressing gown is a favourite. Duvet, my brain suggests. Duffel bag? Duffel coat. Definitely duffel coat. You could take an interest in this, in the way words are indexed and shelved in the library of your mind. But I can’t escape the fear that, somewhere in the basement stacks, a quiet fire is burning, and I’m losing words for good. And with them, I’m losing a sense of who I am.
I thought writing could be a way around this. I have glimpses of myself, moments of clarity, perception, articulation; I can write, longhand but lucidly, for a few minutes a day. I started a website to patch together these fragments, to try to explain my ME to the rest of the world. But I can’t stitch these pieces of myself into a coherent whole, a meaningful narrative. Again and again, my illness silences me.
These kinds of problems with cognition aren’t unique to ME. They’re common after stroke; in certain illnesses such as multiple sclerosis and fibromyalgia; and among people undergoing treatment for cancer – so-called “chemo brain”. Yet in my experience almost no one recognises or understands this kind of disability. When my walking stutters and slows, I’m met with wheelchairs, disabled access and smiles. When it’s my speech and comprehension that falter, I find only confusion, impatience, even disbelief. We need to find ways of talking about and explaining these kinds of disability, too. A new language: one that might begin to replace the one I’ve lost.
Isabel’s website can be found here