I have an ongoing ambivalence about how or to what extent I blog about M.E. On the one hand I want to speak the truth, or at least my truth; it is important both for my sake and the sake of anyone who might be looking here whose life has been affected by M.E.; and in any case every aspect of my life is affected by it so to pretend otherwise would be like not mentioning the elephant in the room. But on the other hand it would not interest me to write a blog that tells each detail of how it is in my daily life. It may, actually, be an absorbing thing both to write and to read, but I wouldn’t have the heart for it, preferring often to “tell all the truth but tell it slant”. If an image can speak for me then I am satisfied, and what I leave out is probably as eloquent as what I might actually say.
Despite everything, though, I find myself challenged. I have resisted, as many do, allowing the illness to define – to become what I am, even though there is so much I have been obliged to give up because of it (for it does seek me with a great and purposeful passion and intent). I have said that it may hold sway in my life but it is not what I am. A certain Process I engaged with last year encouraged us to think in terms of “doing” M.E. rather than feeling it was something laid upon us. This is obviously, in theory, an empowering idea and I can’t argue with those who have taken up their beds and walked, but though I gave it my best shot the process didn’t work for me. I am still taken, however, with the idea that M.E. is something I am “doing” – in the sense that I am trying and, in some respects, succeeding in living a life that is fulfilling and creative in spite of, and in the context of, an illness that is, as I say in my profile, against all things creative.
Yes, it is the very devil. I have just spent the best part of this month fighting a losing battle trying to push it away so that I could get on with a writing (extended prose) project because something in me refuses to accept that this (M.E.) is what I now “do”. But I can’t help remembering what Quentin Crisp once said:
“It’s no good running a pig farm badly for 30 years while saying, ‘Really, I was meant to be a ballet dancer.’ By then, pigs will be your style.”
In other words, we might extrapolate, you are what you most consistently do. But is that true? Because, folks, right now I am not properly doing much of anything – well, unless you count seeing Shrink (who is in my bad books at the moment, but more of this anon). And though it’s not what one might call fun, I don’t feel any less connected than ever I was. I still hear voices. Think the fir trees are speaking to me. Am probably going bonkers. Which might not be good for prose but is ok for poetry.
Back to the drawing board, I reckon.
17 comments:
This is the forum you control, make your own rules.
Hi Zhoen,
I'm not following anyone else's, honest.
Oh God I'm with you here. There are several things that strike me.
Blog-wise it's a constant dilemna about how much to let the M.E. in (a bit like living with it). Will the blog be about M.E. ? Will it be about your life in general and mention M.E. as a by-the-by ? Will the blog try to show how M.E. impinges on your attempts to do whatever it is you want to do ? Will you never mention M.E. at all and it will remain your 'dirty little secret' ?
I think things change over time. At the outset I had decided that my blog would be a space where M.E. was never mentioned. It was going to be the place where I could escape from the bu**er, pretend it didn't exist, if you like. As time went on I realised I was playing a stupid game with myself. I couldn't deny the huge part M.E. plays on my life despite my greatest efforts to keep its effects at bay.
As soon as I changed my attitude to the blog and let the demon in[note I say DEMON ;0)] , I felt more honest and able to speak about a lot of other stuff BUT I was also thrown into that ongoing state of bereavement: the constant undertow in the lives of PWME (or any other chronic condition) which never quite goes away and is always there to remind you of what might have been, how things could have been. You can try to 'put it to bed' but it never quite pulls
up its covers, turns out the light and turns over... to pursue that metaphor.
I couldn't manage That Process either precsiely BECAUSE it implies that I am DOING M.E. If I do something it implies ( to me ) that I have an option not to do it -- which is, of course the view of Lightning Disciples -- but I just don't believe I do DO M.E. For me there's 'doing' and 'being'.
For me M.E. is part of me now --- that doesn't mean I've rolled over and accept whatever the bastard will throw at me. I still have a choice about how I manage the slings and arrows but I cannot see the point of beating myself in, what I see, as a futile battle with something unknown because, for me, M.E. is unknown. There are so many theories and so much speculation that no one really seems to know what the whole M.E. debacle is about. I'm not even sure that when people say 'I have M.E.' that they are speakig about the same condition that I have, or you have, or Nasim or Rachel or anyone else we 'know' who contributes to this little tribe of blogs ad 'has M.E.' All we can say is that we have similarities in symptoms and we suffer and our condition is misunderstood and denied. So M.E. is part of my being just as my brown eyes are part of my being, or the scar on my leg or my love of hazel nuts or my hatred of sweetcorn. M.E. is part of my being and I live with it and manage it, swerve round it, try to surpress its worst features. But until some clever devil manges to really define and re-categorise and sort out the M.E. label and evenatully find me a nice little pill that'll make it all go away I'll have to live with it. No amount of jiggery pokery, tapping, hypnosis, NLP will make it go anymore than those thing would make cancer or TB go away.
What strikes me is that maybe you have been brought up to that bereavement again -- where you plan so much, have so many ideas, set goals and then the demon re-appears and shakes everything up, tears it all down --- and defeat and acquiescing seems an easier option than fighting anymore.
It happens to us all and it's a hard row to hoe but you are strong and you have made the best of the gifts you have. You will keep trying and you will succeed.
I love Quentin and when I'm fighting a losing battle domestically I try to hold onto his motto about dusting but I'm not sure about his pithy remark about ballet and pigs. Pigs are not your style and never will be. You're made of more creative stuff and would look much better in a tutu and tiara than an overall and sh*t shovel.
[Apologies for this very long response...more like a post ! You can delete, edit or cut if yyou like ;0)]
dear Cusp, the only part of your lovely response I might have been tempted to delete is the bit about tutu and tiara. But then I remembered, Gott im Himmel, when I was nine I wanted to be a ballerina. Not for long, but the wish was there. Honest to goodness, an overall and shovel would totally bloody rock my world and pigs - love 'em. I can dream. But I know what you mean.
Yes to so much of what you so eloquently say (but sweetcorn rocks). And you speak, I know, from lived experience - as do the other people of the "tribe".
Well now I'm not going to top Cusp's marvellous comment.
I'm commenting too late for sensible sentences.
But ... the essence of your post is why I started to keep a second blog. So I have rachelcreative blog which is focused on the creative bits and the chronicallyme.wordpress.com blog where focus is on ME.
I don't deny ME on my creative blog. Indeed as my work is effected and even draws on my life/illness it's evident on my blog. And I feel comfortable (at the moment) with ME being a part of my identity because it shapes so many things for me and gives context to them-people-from-the-outside. But I try to keep the blog about creative things and only occasionally blog about other things, including ME, in any detail.
On my chronicallyme blog (which I don't widely publicise or link to) there's a space where it's ok for me to rattle on about whatever is knotty or difficult or to be celebrated or shared or - well, whatever really.
It works ok for me. I always wanted my creative blog to be mainly visual - so it makes it easier for me to keep content focused on the creative stuff there anyway.
With the chronicallyme I sometimes want the focus to be a bit wider - which it could be if I just wrote about wider things! Durr!
But it can be tricky having the split sometimes. Such as not actually telling many people it even exists as I focus on the creative one. But in turn that often affirms my identity as creative first, ill second. Sort of! If only it were that simple eh?
I imagine for a writer it would be more tricky to have 2 blogs. And it's not necessarily the best way to go either!
I think the great thing about a blog is it is possible to reshape purpose/use/remit/etc as you need/want to.
I hope that the bits fit together and make more sense after writing some more about it all.
Now I'm not even sure my sentences are making sense! Must be nearly time for bed ;o)
PS: This rambling comment is so long because the post rings some familiar bells, as does Cusp's response.
Oh bloody hell, so much to think about here.
I'll be back on this thread I hope, with thoughts turned into words.
I cannot imagine what it must be like to have M.E., but you are always so full of insight and wisdom when you blog here, that although you might be in pain and tired, you're still sharp. You have it right in your post -- M.E. is what you have, not who you are.
My dear, dear Signs.
Indeed it is late and having had a few swiftees, I am unable to articulate what is buzzing in my head. So I shall return. yet in the meantime, I ask, is this post related to a recent comment (which if I recall though now cant find!) which asked about you being an ME blog?
I do want to say, that when I read your blog, I dont think about your ME unless of course you specifically post about it. I think about your creativity. I think on entering your site, that I am visiting my friend Signsie's blog and I reckon I am about to read a post with words that dance.
As I said I am swiffie... hope you got my sentiment!
xx
Rachel, I'm glad to have the link to your other blog - have just paid a short visit and will visit again. I find it increasingly difficult to "keep up" with all the blogs that I would like to read, especially with trying to keep some strength for writing. But I would like to get to know yours better.
I think it would do my head in to have two blogs - I am not technically inclined and even setting this one up needed substantial help from Mr. Signs. Also, I very rarely publish my poems/other writing here.
hey Trousers, don't feel you have to deliver words - just waving across the ether is also fine:)
Collin, it's good of you to say this. I think M.E. is unimagineable. You have no idea how much I relish "sharp".
Kahless, dear Swiffie, I am so glad my words dance. And (you remind me) this is one of the reasons that I want to keep writing - thank you.
No, this post isn't related to that query. Actually, I got back in touch and said I didn't think my blog really fitted the bill.
Two blogs is *too* many, I'm with you on that one!
stornat, now that is just lovely word ver.
rhymes with doormat.
you can see why i don't write poetry.
NMJ, all I can think of is Borat. But that doesn't count, surely. Anyway, your prose is poetic - no getting away from that.
trini
has a pinnie
and a mum
called Winnie
It's the gift one's given.
Signs, hope ok with you if I thank Cusp for her moving message. And to say that, as a reader, I am with Kahless - it's your writing, Signs,
that lives.
I don't have ME which is not to say I am not assaulted by other dark demons. Perhaps the common thread is a sense of loss at what might have been, or once was.
Yet still, on a good day, I rejoice in the extraordinary, not least of which goes on here.
Nicola, be my guest - Cusp deserves no less for sheer generosity of spirit, and what she says is of the essence.
Lovely to see you again.
Hi Signs
I do wish for you that you could have an easier time of it. I used to think I knew something about writing but I'm not so sure anymore. One thing I am fairly certain of is that even if you only do a tiny bit, you are still writing.
xxx
Pants
I think you're right, Pants. And with this condition, actually consistently doing a little is probably far more productive than taking on Big projects.
Thanks for the wish.
oh - you deleted it. But I appreciated it all the same.
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