I’m fumbling around in the dark, alright. It’s like I’m waiting for some starting pistol or something to start this journal off. I find myself often refreshing it to look for new content, as if little pixies will add entries overnight. Something to do with long-term involvement with running mailing lists, the lazy person’s blog where others make up all the content and you get the credit, and something to do with my ingrained need for others to help me right now, I suppose.
I’m very self-conscious about the heading up there, the quote from Saint Emily – not the kind of thing I would usually do more than sneer at, then feel a little sink in the heart about. I’m aware how it looks – like a “Kick Me” paper signed pinned to the back of your jacket as you walk into school – and there’s a fair to middling chance I’ll replace it soon, so in this light, I’ll reproduce it here:
Nothing is done without difficulty;
Face difficulties courageously and with humour;
Every life has its hardships and frustrations;
Courage is not only necessary for saints, it is necessary for any well lived life.
The first thing I should say is that I don’t know which Saint Emily said it; there appear to be a couple of Saint Emily’s plus a Blessed Emily. I love how there’s a canonical list of saints – rather like Father Ted’s Canonical Priests List. The second thing I should say is that there’s a middling chance no Saint Emily actually said, as I found it tagged to a message on one of the Yahoo Groups for ME/CFS experimental research, looked it up, and only found a couple more references to it, from “Disability and Illness Quotes” pages, so it may be ecclesiastical myth. Oh and it’s attributed as a paraphrase; she probably said “cheer up, chuck” before toddling off to bingo.
It’s so un-me. Associating a quote like that with myself, even privately. Reading “Disability and Illness Quotes” pages. It all rings of flowers in an empty church hall, weak tea and – dare I say it – platitudes round a graveside to me. Very scary. And yet, when I read it for the first time, I guess in extremis as I am now, it struck me as maybe the only way through what’s happening to me now.
Everything’s changed for me in the last few months – it feels irretrievably, like light switches are being switched off round my body, slowly but surely, as a house says night night; or circuits blowing as the electricity grid shuts down across a city. When you’ve had CFS/M.E. for more than a decade, you distrust your body at every corner. When you’re transgendered, you add resigned, quiet hate to that at an early age. But at least with M.E. you aren’t habituated to think of bits of your body switching off forever: relapses ebb, remissions flow, and you ride on the wave when you can. But when, on top of all these decades of tightrope walking, something actually breaks – in my case my left ear – well for me it’s like the ground’s opened up. If my ear can go half-deaf, start ringing and clashing all day, and become suddenly so sensitive to sound that someone moving a plastic bag can make me feel like running to hide: if all this can happen in a moment, on a July day, when you’re doing ok, when you’re hanging onto work – and an ENT surgeon can declare it “severe and permanent” loss, and, after the requisite tests “idiopathic” – meaning we don’t know why and we’re not going to do anything about it – then what else might happen to my body tonight? Will it get worse? Will my other ear idiopathically break tonight and I’ll be plunged into the world of the deaf tomorrow?
I find it very hard to explain (my inner voice is saying “justify”) just why my world’s been shattered. Plenty of people are profoundly deaf, have chronic illnesses worse and more painful than mine, are deeply cut by gender issues, have to cope with terrifying grief and loss of those they love, have no money, no home, no hope. I can’t account for my own anxiety, depression, grief and deep swell of dread every day that I’ve had for 5 years now, and has suddenly accelerated into terror and a loss of (and loss of the wish for, coupled with a longing for) the outside world. Certainly what I’m experiencing isn’t the norm, and my dose of bad luck in the world isn’t quite average, but I feel an ache of guilt that I know others whose loss and pain on the face of it should be so much greater. I was going to describe the practical and shameful depths to which I’ve sunk in the last week here, but I think that’s enough wallowing for this entry. Think hippo, and replace mud-bath with self-pity and loathing.
Personal “weakness” springs to mind as an explanation for my lack of courage, out of fashion as that notion is with therapists. Were I living in Victorian times, a phrenologist would I’m sure be feeling the topography of bumps on my head to look for signs of weakened hereditary faculties of courage. I hope I’m not just doing the same by appealing to “courage” as a possible way to keep surviving. I have never felt I had any. Is it something you can just have, or can get? I know if I do have any, it’s tucked away under the stairs, and has never seen the light of day.
At least I suppose I’ve found Esme (“ee”) Fumblings’ middle name now, if anyone remembers her: Emily. Esme Emily Fumblings. She’s no saint.