Monday, August 13, 2007

Mind the Gap

There is no doubt in my mind that some people can't help but feel that having a chronic condition such as M.E. might be a bit of a breeze. When someone asks me what I’ve been doing and I say not a lot because I have had a to spend most the time lying or sitting down there is something wistful about the responses I have occasionally had: people tired and desperate for a break in their relentlessly busy lives, can’t help but feel (and say), I wish I could just do nothing. The picture they have is that one is lying on the chaise-longue, fresh out of a long soak in a scented bath, reading a good book or watching a film, while someone brings refreshing drinks and nourishing food. Of course, all or some of these details may apply, but they don’t add up to the truth of the situation. Obviously. If we are lying down all the time we are most likely far too ill to be able read and when we are up and doing, or even lying/sitting and doing, we are probably coping with varying degrees of pain and fatigue and risking more of the same or worse on the following day. The years pass and we long for life. If we seem content with our lot it is a hard-won serenity that has had to be practised over years of illness where so many hopes have risen like new moons, only to fade again. I believe that most of us do not look for sympathy. Empathy is good, but most people can’t possibly know what this is like, it takes a particular talent to feel oneself into another’s situation, one can’t bang on about it the whole time and when an illness just goes on and on it scares people. So now the deal is this: I let it be known that I have a condition called M.E. which impinges significantly on what I am able to do, and then I want acceptance, pure and simple. If anyone wants to disrespect me (which doesn't happen much these days) they can piss off. I am prepared to deal with a certain amount of ignorance and to give information. Basta.

I have said all this before, one way or another. But now, with my new decision to take an extended “gap” period, (where I’ll be working but not “going out to” work) I know I’ll meet a number of responses that have, perhaps, less to do with my situation than with the stressful lives that so many people choose, or are obliged to lead. When I told my sister last year that I wouldn’t be working for a while, there was a silence and then she said, “I have to work.” A divorced friend of mine, run off her feet with work, children and health problems must see this life of mine as an oasis. I don’t get into arguments about it, I can imagine how it feels and have, in my way, been there too in the early days of my illness when there was little money and if I had been on my own instead of living with a supportive partner, my children may well have had to be taken into care. There were hard times, and I never had a penny of incapacity benefit as I wasn’t working at the time the illness struck. Things are easier now. I liked going out to do the work I did, but it took all my strength and what happens in the future is open. So, for now, I am having another gap year and taking the road of “never apologise, never explain” – the contradictions notwithstanding.


Kahless said...

You know what I would say to the people who say I wish I could just do nothing or I have to work...I would say cobblers - if thats what you want to do then DO IT!

I spent a chunk of the weekend in bed with my head under the duvet. I would never of done that a year ago, I would have felt obliged to do things like a relentless hard worker. Now I am able to choose to rest up and do nothing if that is want I want to do. To hell with mowing the lawn or finishing that diy job. And I have my health.

So good for you Signs. And I wish you improving health and recovery over this gap year.

oh and thanks for the new word which I googled...


Reading the Signs said...

Hi Kahless - sometimes it's just thoughtlessness. If I think there's another agenda I'll strike back, but mainly I try to steer clear of debate about it.

I hope your weekend under the duvet was, one way or another, beneficial.

Thanks for the good wishes.

cusp said...

“never apologise, never explain” ...and amen to that. As you have said over at my blog, there does seem to be something n the air. Old Fluttertongue is having similar problems.

The thing is that unless you actually go out of your house in some way to work, you are already regarded as some sort of loafer. When I was freelancing and at home most days, years ago, there was an inference from many that I spent all day watching daytime telly and eating biscuits. In fact I was grafting all day on the phone, writing proposals, getting work, preparing work etc. etc. : it's just that I wasn't seen to go out of my front door. My bro in law, who is a professional musician/composer gets the same stick.

Take this to another level eyou aparently have the 'yuppie flu' and you'll be seen as a complete tosser (pardon my french!).

Stick to your motto and to hell with all these ignoramuses who can't deal with alternative lifetsyles or other ways of being in the world other than 'dynamic' desk jobs, promotion, bonuses and bigger and better stuff.

Reading the Signs said...

Hi Cusp - I fear I may not have expressed myself very well for I do actually understand the reactions (coming from overstressed lives etc) and I am not seething with resentment or anything like (though the language I've used perhaps makes it sound that way).

What you say about the business of working at home is interesting. A writer I know ended up renting an office to give herself and others the message that she was At Work, as it wasn't coming across when she did the job at home.

Yes, it's a good motto, isn't it - for so many things, really.

Anonymous said...

It is hard sometimes not to let our prejudice thoughts escape and judge people without giving them the benefit of the doubt. It is a tough battle to remember that there may be a reason for someone's actions, regardless of "how things look." Innocent until proven guilty, it is best to remember.

As thoughtful as you are, I see you as someone who lives her own life, marching to her own time, be it in synch with someone else or not.

I don't really understand ME (nor could I, really) but I respect anything that has been given a name.

Reading the Signs said...

Hello David, is it me that's doing that or The Others? No matter, whatever you are saying is, I am sure, very wise and I am, as you say, marching or (to be more accurate) shuffling to my own time and at this particular time a very acceptable piece of Jazz (My Baby Jus' Cares For Me) arranged by my son for the group he sings with.

I hope you are well and have just discovered the truth of your other name at Mr. Moon's

fluttertongue said...

How well I recognise your sister's comment. Whenever I go out, people who know because I've told them a billion times still ask what my plans are for the rest of the day. I find myself constantly apologising and making plans that I know I can't keep. I feel resented. Part of me wants to escape this busy world into which I do not fit and part of me wants to cling onto it with all my might. Best of luck with your gap year. I take inspiration from you.

Kahless said...

Duvet was good thanks Signs.

I also 'worked from home' today.

Reading the Signs said...

Hi fluttertongue - it's a difficult one because if you haven't been ill for long and still feel there is hope of imminent recovery then it's a very different picture to when you have had this for over 20 years. In both cases, of course, one has to live with what's going on in the now, but it makes more sense to cling on when you haven't had it long.

But anyway, the 'never apologise, never explain' way is good for almost everything and I should have adopted it sooner. I recommend it.

Have seen you over at TPE's - nice to see you here too.

Hey Kahless, hope it wasn't overtime. Saw your delicious-looking curry, btw, and copied the recipe.

Anonymous said...

It was The Others I was referring to (and defending, I guess). I can only compare myself to them, more than I can compare myself to someone living with ME.

Keep dancing, or shuffling, or singing or just plain smiling to "My Baby Jus' Cares For Me," please.


fluttertongue said...

Yes I imagine you're right, although I've got to the stage where I can't remember what it was like before. I'm lucky to have testimonies from others such as yourself to prove that it isn't wholly depressing. And, believe it or not, life has, on the whole, got better since it's been with me. Just a little more painful and complicated. I've been hanging around for a while now. Hopefully more like a benign presence than a bad smell...

Reading the Signs said...

David, I find myself on the brink of trying to explain; but will confine myself simply to saying that I am not prejudiced, sitting in judgement or pronouncing on guilt. I speak as I find, my truth, and with consciousness of the stressful lives that many people lead as well as the predicament of people who strive to live with chronic illness such as M.E.

Yes, I will always be singing (it's one of the things I do), about the dark times and the good times, the shadow and the light - my truth.

Reading the Signs said...

Fluttertongue (can I just say how I'm enjoying your name) - I'm glad if you have been reading here and enjoyed. If I understand rightly what you're suggesting - yes, life can be rich at the same time as being painful and complicated. I feel this too.

(I think I smell freesias now btw, very fragrant)

Anna MR said...

Hei Signs, Kolmio, Madame Väistämisvelvollisuus risteyksessä - you are fab and no mistake.


oqzbv - Oh Queen of Zeal, Beauty and Veracity

(for God's sakes, here we go:
yvayfsd - You Voracious and Youthful Fair Signsy Dame)

Reading the Signs said...

Anna! You breeze in here just as I turn my head and disappear as quickly as you came - glad to see you in bonkeroony form, my dear.

You know I don't know what Väistämisvelvollisuus risteyksessä means - but trust that they are good things as they come from you.

That's so pants said...

Hi Signs

For all our talk about attaining a healthy work/life balance, we aren't managing very well to attain it for real. If someone could please stop the treadmill, I'm sure we'd all like to have a conversation about how fast it should be going and how and when we'd each like to get on and off it.

I'm also sure that if 'life' wasn't constantly presented to us as a race that must be won, we'd stop competing with each other and start valuing individual qualities in people much more.



Reading the Signs said...

Pants, I agree with all you've said here. I think that one of the things that happens when a person, whether disabled or not, steps off the treadmill is that people are often threatened - mindful of their own seemingly inescapably stressful lives.

I will always wish for the health and strength to do more and to live without pain or discomfort. But I don't wish for the kind of life that I would almost certainly have had if I had never been ill in the first place.

That's so pants said...

Hi Signs

I think you're right about people finding disability threatening. We are more and more conditioned to have expectations of long healthy lives and obsessed with how to achieve that state. I also think that attempts to 'blame' people for becoming ill by the constant efforts to link illness to personal decisions about lifestyle choices exacerbates this tendency considerably. I actually know people who believe that it's possible to draw illness to yourself by having a negative attitude to your health. Do you think people find ME threatening because no one understands how or why it happens?

People regard non smokers who develop lung cancer with total incredulity, as if it's simply not possible for there to be no causal link. The fear of a debilitating illness that just strikes you down without any warning or reason is too scary for some I guess.



Reading the Signs said...

Hi Pants - I think I ranted early on about the Louise Hay "You Can Heal Your Life" approach to illness and healing. My stepmother died of leukaemia intoning some of the "affirmations" in that book, convinced (almost) to the end that she could cure herself by changing her attitude and general way of thinking. But - much as I dislike this sort of blame-the-victim approach to illness - clearly all sorts of things, including early childhood, psychological state, bereavement etc. may play its part. But also it is a truth that should be universally recognised that shit, like lung cancer, like M.E., sometimes just happens, things malfunction and we don't always know why.

I think people find M.E. threatening for so many reasons, not least because the way we have to live challenges everything about the idea of life as a race that has to be won. That kind of life requires people to do more and more with less and less time to think about and process it, whereas "we" have to think about every single thing we do. And we're not good for much of what rat-race culture promotes as being important.

Rabbit said...

You explain it so beautifully. Although I don't understand it from a professional persons view because I have never been there.

I see a similar thing between my brother and not having to do things like the dishes or helping cook. I think he gets very resentful sometimes.

It is strange I can remember my bestfriend trying to explain ME to me the year before I got sick because her mum has had it for years. So I always try and remember what I felt like then, when I try and explain to someone. Mostly I go for the “never apologise, never explain” too.

Thanks for adding me to your blog list :)

Reading the Signs said...

Hi Rabbit - a pleasure, and thank you also. I also do my bit to explain about M.E. if someone asks. What I won't do is try to justify myself - perhaps that's a better way of putting it.

The example you gave of yourself and your brother and the dishes is a very good illustration, though, of some of the real difficulties that can arise. When my kids were at school I was resented by other mothers for not doing my bit more and there are times it must have looked as though I were simply ducking out of things. But at least I didn't have to live with them. I was lucky in having a very supportive partner.

Nicola said...

Signs, I don't know how ME feels, but I know someone who does and he is one of the most important influences on my writing life because he has learned to live in the moment and to take nothing for granted and to accept that some days, having given his utmost, he will find the following days almost unbearably difficult. But he goes on and is a fine example to me of the best of humanity as you are too.

Reading the Signs said...

Nicola it's good of you to say so, thank you - I am coming across a number of brave and inspiring people here in blogworld, some of whom have been commenting on this very post.

Maggie said...

Dear Signs, I agree it's norra lotta laffs dealing with ME. And it's been real hard recently with both parents in hospital/nursing homes and then Dad's death and funeral (which John and I had to organise, the Funeral Directors who helped were absolutely fantastic, so helpful and kind, if you ever need that kind of help on the Wirral I highly recommend them!).

I too am fortunate to have a very kind and supportive partner. Without him all of the little energy I have would go into just the chores of daily living - you know, those things you really *do* have to do like get food in and prepare and cook it. ;-) Have to admit I don't take as many baths as I should (can't stand long enuff to shower cos of vertigo on top of the lead legs), but fortunately spouse has no sense of smell! :-)

Nobody would want to live like us though. John works full time, and then has to do most things for me. Including visiting Mum when I can't. He doesn't get much time off.

The house is full of clutter, but at present it's beyond either of us to do anything about it. We both have difficulty finding the time to get to dentist and doctor - and both of us need to. Guess that's just the territory that can come with aged parents, but it's so much harder with ME. Hopefully will recover over the next few months from the exertions of the last year or so, and then begin to eBay some stuff and chuck the rest if Oxfam don't want.

Sorry, I'm rambling - don't think I woke up properly today!

Best wishes from cloudy Liverpool