After reading the interesting post on good enough parenting by Ms Melancholy I began to think about what it also means to be (or to feel one is) a good enough person. This is a particularly relevant question for the long-term sick or disabled, those who for one reason or another can’t assess this in terms of measurable achievement in the world. I suppose that anyone who does assess themselves in those terms is already not feeling good enough, and it should go without saying that every person, by virtue of being just that – a human being – has intrinsic worth. But everyone has their own unique identity and it’s good to consider what it is that makes us who we are, to name those things that you would never put on a CV.
At the moment, having a gap year, I have no paid work, no small children to look after, no particular status in the world and I don’t even sing in the local choral society any more. I remember Ms Pants (miss her, where’s she got to?) saying triumphantly in one of her posts that she was at that point in her life virtually untrackable - unmeasurable by Government standards, and this made me smile. She was talking about consumerism versus real quality of life, the former being one way that we can buy into ersatz rather than authentic identity.
My life is closer to the rhythm of my cat than to most people I know, unless they are very young or very old. I wake, do the things that are necessary to keep me nourished, clean and rested, keep in touch with friends and I write. The writing is one of the things that name me, and I’m not talking about fame. I have had only bits and pieces published and hope for the strength to do much more, but whether or not that happens it is, as they say, what I am for – this, and the teaching of it.
Feeling one is a good enough person, though, comes out of a sense of identity and this is hard to pin down, like a fragrance with its green or floral overtones, its musky bass notes, that has not yet been given a brand name. I never suffered, as so many other women I knew seemed to after becoming a mother, from loss of identity. If anything, that became stronger, though it wasn’t to do with being a mother, close as I felt to my children. It was just a sense of being there, walking the pavements with my two flat feet, having arrived and taken possession of myself. This, in spite of the fact that I was ill and becoming iller than I thought possible. Everything I wished for was part of the essence. Sometimes all I could do was sing and invent things, tell stories about the people that passed by the living room window, make stuffed animals talk and sweets come out of their mouths. It came from who I was, the person who liked to make things up - from that, and perhaps the unwillingness to accept things just as they are. I have never believed in just this physical, tangible layer of life. I am a believer in magical dimensions that live beneath the surface, behind the visible world, and that is also part of the essence. It has got me through days when all I can do is lie and look at strips of sky through wooden slats. Escape strategy perhaps, but also a sense of being connected to things; power and presence in a clear, starry night.
I’m not unusual in these things, and that’s not the point. And life may be easy or hard, humdrum or glamorous, and that’s not the point. The point is that those things that name a person, the substance of who they are, are most likely also to be the things that make them good enough.
22 comments:
Hey Signs, May I just second PE's retrospective comment about your writing being so divine and lyrical. I also like that it is not so lyrical as to be obscure (I get lost with that kind). I always come away from your posts feeling as if I have brushed against pure wisdom.
Yup, this whole self thing is a tricky one.
The writing is one of the things that name me, and I’m not talking about fame. I have had only bits and pieces published and hope for the strength to do much more . .
I can only echo what you have written here.
Miraculously, I have managed to hold onto a strong sense of self in spite of illness blowing any career apart - it would be so easy to have lost all sense of self, given that I got ill so young, and given all the flak we (all of us) have had to take as PWME.
I'm sure our respective experiences of ME have affected us the same and differently, I don't have children, so I don't have that responsibility, though I take my role as aunt to my young nephews very seriously, and think I am a good aunt. I am happy I can give those wee boys my maternal arms.
I also find it revealing that I would never describe myself as disabled, even although I am clearly not able, but I would always say debilitated (often hugely so) or chronically ill, but that just throws up my own psychological fears and frailties about that word.
Anyway, what I am hoping to say is that you and I, Signs, we can both, honestly and proudly say we are writers!
thank you, fellow soldier nmj, and I see you spotted dear Mr PE wandering around my blog - he says he plans to catch up and perhaps move ahead of me.
Yes, and I'm thinking that there must be many with long-term illness who also have this sense of strong inner core simply because it is so essential when other things fall away.
I have only quite recently begun to take on the word disabled because I feel that it tells the truth about aspects of my life. There are also times when I would have appreciated practical recognition of such in terms of benefits and home help, and to me the word debilitated just sounds as though one is a bit under the weather. But it's important that we use words that feel right for each of us.
And yes to the last!
I think I might have picked up a spammer up there, damn cheek. Got rid of him, anyway.
You're absolutely right, debilitated is nowhere strong enough unless you qualify it - I just wish there was another word, a perfect word . . .
What a wise woman you are.......I do so enjoy your reflections.
Two things strike me:
* what you seem to be exploring is the sense of essence. Before this blessed condition got the better of me (and God I struggled and fought for years) I used to work with people with dementia : creative work, not caring (though I've done that too). In the course of that work I came to realise that, even though so much of an individual's personality may seem to disappear, the essence remains. I would also work with relatives and friends of the person with dementia and talk with them about their own distress. Somehow, the notion that the essence remains would sometimes seem to help.
Later, cruel irony and fate, my own father developed Alzheimer's and then my mother-in-law too. Both were very dear to me and, taking off my professional hat and my arty farty notions I became sceptical of my ideas and potentially patronsing comments to those relatives and carers. However, as the disease progressed I realised that I was right and that, despite the ravages of that terrible illness, both my father and mother-in-law still displayed a central gleam. It was as if they had a little diamond in them somewhere. Gradually the earth and soil mounted up around them and the sparkle was obscured but if you looked really hard, the thing that really made those two people 'them' was still there. It might not be displayed in the same way but curiously they still had the same effect on other people they had always done. They were both people who had been generous and kind and relatives, friends, carers who had never known them before still recognised a generosity of spirit
* the second thing which interests me is this discussion of taking on the various labels that are assigned to people who are not as able as everyone else. Curiously, in 'the other life' before I crashed, I spent years working with people with disabilities. When I did become ill I thought of myself as 'ill' ---as in 'I am ill and I will get better'. It's now quite apparent that I won't. This is as good as it'll get and I was finally diagnosed (with M.E.) 6 years ago and yet it's only in the last year that I have felt I have a right to say I am disabled. I may not be able to get DLA and I may not be able to get a parking badge but I cannot do what I used to and I AM disabled. I don't feel apologetic about it anymore. I don't even feel sad anymore --it's just a fact and I feel that the longer I try to pass off this condition as a passing malady and don't call a spade a spade, the longer it'll be before other people realise that this condiiton is very disabling and wrecks lives.
I could go on and rant about the definitions of disability: the types of disablement e.g. physiological v. social but I won't because I've taken up enough space in your Comments.
All the same I think you have opened up a fascinating debate about how people like us (very U and Non-U darling !!) define ourselves ....before some other b***er defines us.
(Sorry about this Signs, I just had an horrendous trip into town...things I HAD to do when I really felt like crawling back to bed and I felt so annoyed that I couldn't have a disabled parking space and I couldn't say, let me sit down in the Post Office........bit like your experience in Argos with the girl in the wheelchair)
Hey Cusp, I love the idea of still displaying a central gleam - I worked as a volunteer for Alzheimer's Scotland's 24-hour helpline for 5 years (our helpline was a flagship for rest of UK!) so also have some insight into dementia, and have done a lot of voluntary work with people with learning difficulties.
As PWME, we are clearly 'disabled', to greater or lesser extents, my point was more that I don't like to think of myself as such, it's more a self-preservation thing. I think of myself as someone who is severely limited in what she can do because of chronic illness.
ME/CFS is thankfully recognised by DWP as being disabling and incapacitating, but it is still notoriously difficult to get actual DLA, but the most severely affected do qualify. My friend is on it, though she had to appeal several times, and she gets the sticker too.
I had an article published last summer in the Glasgow Herald on the punitive and convoluted loops and hoops of incapacity benefits, but their archives no longer link to it.
ilhThank God for anyone who supports people with dementia and their carers. Scotland has long been in the vanguard of services for people with dementia. The Uni of Stirling does some brilliant work; look out for the poems written by John KIllick about and with people with dementia. They are incredibly moving.
I know what you mean about thinking of your self as not disabled. I'm the same really --- it's just that the subtleties of that label are complex. In some ways I am definitely disabled and so are you ---i.e. in many of the ways in which ordinary people think of 'disability'. In other ways I'm not e.g. in some ways I'm as disabled as my son who has learning disabilities and problems with sight but in other ways he is more disabld than me. I think we're disabled in the sense of opportunities, time, spectrum........ One of my best friends is a wheelchair user after a dreadful accident and yet she works full time, drives about, has an active social life. There is no doubt she is disabled and her physical condition makes life more difficult and sometimes intolerable, but she can ofetn do more than I can. This could go on and on as a discussion so I'll shut up or Signs will quite rightly ban me from the Comments list for taking over her blog (I'm slapping my wrist now, Signs):(
hey cusp, thank you for this thoughtful and interesting response - for which there is always space in my comments section! I was moved by the story of your father and mother-in-law and how you came eventually to test the truth of a previously-held belief on personal experience. Like nmj, I very much like the images you chose to describe your sense of the inner being of both of them.
I feel as you do about the term 'disabled'. Nor do I feel in any sense diminished by the term. I also accept your definition, nmj, as being severely limited in what I can do.
Many of "us" (absolutely, dahling!) fall somewhere outside of any particular category. People who don't know me well wouldn't guess my condition and I can, for given periods, give the appearance of functioning quite normally -until or unless I hit a wall and then have to bow out or explain. I am choosing, increasingly, to let people know in as matter of fact way as I can, so it can be factored into any arrangements I might have to make.
I no longer feel sad about it either, though in writing about it here I have the sense that this is how it might sometimes come across. And I feel I tread a fine line between going on about it - because I DO want to be able to refer to something that is so central to my life, and to tell it "like it is" - and just shutting up about it so as not to 'burden' those who might feel I am asking for sympathy.
And of course I'm not always thinking about it. Aware of it most of the time, yes, but with my attention elsewhere.
I live with a question, though, about how much I allow it to define me, this illness, and am aware that some sense of shame still attaches to it, of it being (as i've said before) very bad P.R. And yet I feel it's important to Come Out about it. But I don't want to bang on about it all the time either.
ok, I'm beginning to ramble and repeat myself.
oh, you crept in there without me seeing. Will have a look for John Killick's poems.
And you are most welcome to my comment box - I invited nmj and the the Periodic Englishman to have a sleepover here once, and I'll extend the same to you. Hot chocolate or herb tea?
I'll respomd to your latest post in due course as I think, as usual, you have made some really interesting points and they really echo my own feelings and thoughts about the predicament of having a chronic illness.
In the meantime, may I say you are a most gracious host and I'd love a sleepover. Is it formal or informal (silk pyjamas or an old T-shirt and trackies ?)*
Mine's a hot choc please.
* Since this is an ME sleepover, could I just ask what time it'll be --- night time ? afternoon ? mid morning ? and also, if the sleep will be over 14 hours long or interrupted by a dysfunctional sleep pattern I may have to bring a note from my Mum.
Hey Lovely Cusp & Signs, . . . (Forgive the deleted comments, my link below wouldn't work!) Yeah, I saw John Killick a few times at Alzheimer's Scotland workshops. If I were well, this is the kind of work I would do.
That is the hidden tragedy of ME/CFS, you can often do less than someone who is a wheelchair-user, they are more disabled in that they are obviously less mobile, but they can actually have much more stamina. It is also known that people with MS can have more stamina than those with ME. Once I was discussing with a so-called friend my decision not to have children cos I felt I would not be able to cope physically, and he said, People affected by Thalidomide have children, why can't you? I realised then he didn't have a goddamn clue about my illness, and I have never seen him in the same light since. If you met me for coffee, you would have no idea I was ill, but you could probably not spend a day with me without realising something was up, I can't hide my illness, it's not possible, and yet, I am honest (stupid?) enough to say I do feel diminished by the term disabled, but that is my particular personal issue. I agree, Signs, I also don't like to labour the ME point on my blog, but you can't not mention something that is so central to your life, though I think I am the bad girl of ME blogging cos I once suggested some ME blogs are dull! . . . What I dislike is when PWME are so absorbed by their illness they go on ad nauseam. Perhaps I am just jaded after so long with it. I know PWME are horribly short-changed, I spend my life educating people, but there is other terrible stuff goin on in the world (and some PWME seem to forget this.) Anyway, I won't get into that here. Jeez, I am turning into the Periodic Englishman with this lengthy reply!
Come as you are, silk PJs or Tshirt - and dysfunctional as the night dictates. We're pretty cool about that at Signs Cottage, and so is the cat.
nmj, funny, I did think that I might be the one turning into the P.E., and on my own blog too.
I looked at the link to your old post. It struck home, and the response by anon as well. I am aware that the people who have this very severely (mainly bedridden etc.) are doing what a friend of mine calls "the advanced course".
It has occurred to me that I haven't actually seen that many M.E. blogs and I couldn't bear to read endlessly about symptoms unless there were also some other point of interest - such as the style in which it was written. The best blogs, like novels, aren't necessarily those in which lots of fascinating things happen. Sometimes the best are where very little happens at all but the writer brings a particular take on things that engages.
re. the thalidomide comment (and did you bash him?) - it has often occurred to me that if I had been a single parent at the time when they were very small and I very ill, they might have had to be taken into care.
Have I deleted someone's comment by mistake?
hey signs, quite a few ME blogs link to me, that's how i got to know about other ones, you know how you find people via people - without really trying - but i honestly tend to avoid ME/CFS blogs unless they have something else to offer, although there are a few that are close to my heart: sofamum & greenwords & seatsforlanding . . . i think of you more as a writer/philosopher . . . ah, yes, i am still angry with my friend about the thalidomide comment!
What a beautiful post, Signs. I have a friend who gave up work due to depression, largely brought on by the shifting values in higher education and the pressure to teach 'advertising' when he was a very committed sociologist. Teaching advertising to students felt like selling his soul to the devil. He jumped before he was pushed, really. When people ask him now what he does, he says 'I potter a little'. Actually, he writes prolifically, but I so love that that is his answer. We are so much more than simply what we do.
writer/philosopher, nmj, oh you have made my morning (and I say this having had one of those nights where you arrive with jet lag the next day).
thank you, Ms M, and it's true, though I also believe in the idea that we are what we most consistently do. But the "doing" may not manifest in any obvious way, may be an inner thing, and there are those who have to spend long hours doing tedious work that does not define them. It may be, though, that the way they cope with this, or even the way they don't (because suffering also is to be respected) does.
Awful sentence, but I'm jet-lagged (see above). Happy hols. Camel Lights, please.
I think it's me too who is turning into P.E.....I keep writing and writing.
I agree about the CFS/ME blogs stuff. I vowed when I started mine that I wouldn't mention it at all: that the blog would be a virtual space where I could 'hide' and be me and not the label, but, inevitably, as you say NMJ, it creeps in, seeps in like living over a mains drain with a cracked pipe. It really p***ed me off at the time....thinking was there no escape.
There are blogs where the condition is incidental and the other creativity is central like Michael Nobbs' blog. As for the other blogs and newsgroups well they can be tricky for me. I do follow 'progress' on some Newsgroups but sometimes it seems that the people there have made the condition their new profession and personally I want to be Cusp first and anything else second.
Many moons ago I was ill with something else for a long time and there was a point where I was often referred to as my illness: ghastly .........and it won't be happening this time. That's why I admire people like Michael or my pal who uses the wheelchair because nobody really sees her mode of transport --- only the person, becasue she's jolly and creative and interesting.
I suppose in the end if you had much of a life B.M.E. (before ME) you have to just relinquish that which is not possible and try new stuff. I loved my work with people with dementia and loved the people. It was a very sad day when I realised that I just wouldn't have the stamina to go to Care Homes anymore and sit and chat and be creative and spread the word about that topsy turvy world and the joyful possibilties within in. Still,I do have my kids and they are a joy; difficult though that can be.
Cheesy, but you do have to count your blessings: lovely sunny day, chickens all laying well, dog's getting better, daughter got certificate for being best lunchtime monitor and son got gold merit for art........happy days !!
It does occur to me, though, that there is this expectation that ill people are kind of expected to be jolly and splendid about it. Or that it's ok to be ill but you have to prove you are something really great else as well to make if ok.
Just a thought. Think I'll change my profile again.
Oh that's true too ...'tragic but brave'. B***er that ! It's always interesting how metaphors about fighting and war and courage are used when talking about illness. Susan Sontag says it all better than I could ever do ('Ilness as Metaphor').
I'm trying hard to be just as I am. I spent years hiding it (M.E.), covering up and now I just tell people I have M.E. and I use the term 'ill' rather than 'tired'. I try really hard to stick with what I need ( without being selfish)e.g. if I need to lie down when they come round or take a nap I just do it.
On the other hand I'm me first and the illness is incidental. I don't want to be tragic and I certainly don't want to be thought of as brave because I couldn't keep it up. 'It's my party and I'll cry if I want to'.
Go to go and cut up an orange into segments for my poorly daughter to suck now ........thats how it should be when you're poorly and little: wrapped up on the sofa in a blankey with your favourite cuddly and nice things to eat. That's what we all need. (She says I'm to put that it also helps if you can do drawing !...she's looking over my shoulder, cheeky monkey.....) Should we re-introduce the 1940s idea of open air hospitals where you spend the day in bed on a balcony 'plein air' and sip beef tea ?
Thank you for your very kind words on my blog. I was (and am) extremely touched.
I loved this post. I am certainly at the age where I have had my share of rejection, and uncertainty, and wonder in my life, and I feel like I am in a much better place now, as a person, to be a good person. That is what I want right now, to be someone my boys talk fondly of years from now, and smile as they do so.
I liked this post very much and found your words touched me in that way, they made me smile.
cusp, I have often thought that "it's my party and I'll cry if I want to" would make a nice blog title.
goodthomas, yes, I can feel all these in the few pieces I have read on your blog, so clearly you stand in your words. Thank you for your comments.
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