My Last Essay And Other Stories

Well, the middle of August is not the best time to pop up in the blogworld after a lengthy absence, but the lovely Numero Cinq online magazine is coming to a close and I have a final essay in it on Doris Lessing. I’ve had a wonderful time writing for my gorgeous editor, Douglas Glover, who is also an excellent writer himself (do check out his story collection, Savage Love, it’s incredible).

And I also promised a catch-up, if there’s anyone out there who would still like to catch up with me. Basically, I haven’t been blogging because I still have recurrent marginal keratitis. I seem to have a genius for developing conditions that can’t be cured but only unreliably managed, and despite my best efforts with every eye gel, drop and lotion on the market, it still flares up, especially when I read. So I hope you’ll understand that I haven’t been around visiting blogs because a) the reading is a bit much for me and b) it’s sort of depressing to hear about the lovely books everyone is reading or looking forward to reading, etc, when I’m so restricted these days.

I got excited a little while back over Manuka honey, after finding an account of a man who’d had my condition for four years, lost his job because of it, and tried everything to fix it. Nothing worked until he bravely attempted an experiment with the honey, putting it directly onto his eyeball. How he managed this, I do not know, as I bought an eye drop with a small percentage of honey and to say the red fire ants are consuming my eyeballs when I use it is an understatement. You should have seen the comments – so many people desperate for a cure who had had marginal keratitis for up to 25  years, all hopeful for the first time. I’ve been using it for six weeks now and maybe it’s helped a bit; it’s hard to tell and there’s certainly no great change or return to stability. But I will persevere.

In more positive news, Mr Litlove launched his furniture-making business at the start of July over the course of two Cambridge Open Studios weekends. He had a terrific response: on the first weekend we had just under a 100 visitors to his workshop and the little gallery we’d set up. The second we roped in our son for reinforcements and had somewhere between 60-70 visitors which was definitely more manageable. Since then he’s done well with orders and enquiries. He’s currently making a desk and chair, with a shelving unit, coffee table, eight chairs and a table and another table lined up, a possible further six chairs in the pipeline. So he’s really happy.

As for my novel, well, it’s been a very odd experience. I did well to begin with in my last submission round at the end of March. Four agents requested the full ms. One backed out almost immediately but that was fine as she was a non-fic person standing in for a colleague on maternity leave, and I wasn’t sure how that would work anyway. But then the next three just went quiet and four months later, I hadn’t heard a thing. One finally turned up about two weeks ago with a no, which I was expecting after all that amount of time. The other two, still not a peep. I mentioned my experience to the online writing group I belong to, and one woman replied to say that her last submission round came up with 10 requests for fulls. Of those, there were seven rejections (that took 6-10 months to arrive), two r & rs (not sure what this is but think it must be rewrite and resubmit), and one whom she had not heard from despite numerous prompts. She had finally saved up enough money to get a professional report on her book and now felt she had a good direction to take it in. Two years after submission.

I admire her grit enormously, because people, the timescale here! I don’t think I have it in me to stick with a novel for the two, three, four years it must take anyone to find a home for it. In the four (almost five) months of agently silence, I have fallen out of love with the old novel, started another that’s now much more interesting to me, resurrected a non-fiction project and have joined in with two friends on an interdisciplinary artwork that should be sheer pleasure. Maybe something will come out of these things and maybe not, really who knows? The system, such as it is, for turning professional with art, seems to me hopelessly overwhelmed to the point of brokenness.

But I don’t want to self-publish novels either. That’s just another way of dropping your work into an ocean of verbiage from which little is ever distinguished. Unless you are some sort of marketing guru, that is, and I am not. So I don’t know. I suppose I keep enjoying a writing life, and try not to worry too much about a writing career. That works better some days than others, of course.

 

 

New at Numéro Cinq

Way back in January I had a properly wonderful experience. I went to the studios of two very talented women: the painter, Miranda Boulton, and the poet, Kaddy Benyon, and spoke with them about their creativity.

The results were fascinating. Two amazing artists with two perspectives on creativity that could hardly be more different. We spoke about fear and anxiety, about process and productivity, about inspiration past and present, and about the roads their careers had taken them down.

The interviews are now up at Numéro Cinq and I think they’re both reassuring and encouraging for anyone who wants to live a creative life or simply explore their own relationship to art.

Each To Their Own

So I’m standing at the kitchen sink doing the washing up the other evening, when Mr Litlove looms out of the darkness coming up the garden path. He’s been out with his chums at Shed Club, which, yes, is totally a thing. It usually makes him happy and indeed he is looking very chuffed with himself.

‘Look what I made!’ he’s saying, before he’s even got close enough for me to see him clearly.

He appears to have a great wicker bow sprouting from the back of his head.

‘What is it?’ I ask.

He moves the pole he is carrying off his shoulder and waves it at me. ‘Look! It’s a willow dragon fly. For the garden.’

When he is finally indoors and in the light, we examine the dragon fly. It has a densely woven body and great looping wings and a faintly malevolent air. Mr Litlove is pleased as punch with it.

‘I thought you were wearing it in your hair,’ I confess. But he is not displeased with this idea.

‘It could be a fascinator,’ he says, balancing it above his head. ‘What do you think?’

It is quite fetching, his Hobbity fascinator.

‘And if I’d said, “Darling, will you come with me to macrame class,” would you have done it?’ I ask.

‘Probably not,’ he agrees cheerfully.

Once upon a time, several months ago, Mr Litlove went down to the woods at a nearby National Trust house and joined a green woodworking circle. It was just to have a go, just to see what it was that they did. He made what can only be described as a very Brothers Grimm stool, and was then invited to join a sort of spin-off group to weave the seat out of strips of bark. Then he kept going so he could whittle spoons, and then try making bowls with a pole lathe.

I said: ‘You whittled spoons?’

Only the other weekend, he was in the woods again, stripping the bark off of a tree. I watched him skip down the path to the car with some bafflement. It makes me think of those verbal reasoning questions you’re given in the eleven plus exam.

‘Stripping bark off a tree is to Litlove what…… reading poetry for fun is to Mr Litlove.’

It’s really only a question of taste. I’m just not into rustic, particularly. I’m sure it’s lovely! Really! In the right setting and all that. Or in the wake of Armageddon. I’m sure that, if we survive, I will be completely thrilled that Mr Litlove will be able to whittle us some more spoons and bowls. And weave us some seating.

Isn’t it a funny thing, taste? It’s so random and unaccountable and yet it means the world to us. We were having a different conversation about essentially the same thing last night, when we got talking about what the first records were that we ever bought. I swear hands down that you will not be able to beat Mr Litlove’s first record choices either in terms of eclecticism or unaccountability. You could never guess them in a thousand years. His first records were George Formby, The Smurfs and Jesus Christ Superstar.

Isn’t that joyful?

‘I really want to blog about that,’ I told Mr Litlove.

He shrugged. ‘Oh go ahead. No one will believe you.’

I didn’t buy many records when I was a child because I have a much older brother who was always, always into music, so I just listened to whatever he was playing. For those of you who were children in the 70s and may enjoy the nostalgia, I remember especially: Supertramp, Steely Dan, The Police, Ian Dury and the Blockheads (My given name is Dickie, I come from Billericay, and I’m doing very well…), Judie Tzuke (probably my favourite of the albums my brother played), Gerry Rafferty, Pink Floyd, ‘Afternoon Delight’ by Starland Vocal Band (which I always thought was about a 4th July picnic!) Meatloaf’s Bat Out of Hell, Simon and Garfunkel, The Eagles, Bruce Springsteen (Baby we were born to run…) and probably my brother’s favourite: E.L.O. I remember also ‘Baby Don’t Fear The Reaper’ by Blue Oyster Cult and the one heavy metal band he liked, Hawkwind. Everyone else thought it was just a racket, which spurred my brother on to play ‘Silver Machine’ as loud as the volume would go.

I do remember buying ‘Take A Chance On Me’ by Abba, because there was no way my brother would be buying that. And I am also pretty sure my first ever record was ‘Forever Autumn’ by Justin Haywood, though I know he had the double album of War of the Worlds. I still have a strong visual memory of the cover art with those menacing stalk-legged tripods. But my great personal obsession when I was a child was with the score of West Side Story. I was given the album for my 8th? 9th? birthday, something like that, and I probably wore it out.

But you just can’t negotiate with what you love. And much as you can get an appreciation of something that doesn’t speak to your heart, it’s difficult to get further. I also thought I’d never heard any of The Smurf’s singles, but when Mr Litlove sang me a few, I did recall them!

When CFS Meets the NHS and No One Wins

So, last week was an unusual one for us because Mr Litlove was unwell. I always find it intriguing when he falls ill, because I get to witness what happens when a healthy person goes through a virus. Mr Litlove is a stoical type on the whole, but being ill makes him anxious and miserable, especially when, as in this case, he has an unpleasant symptom like stomach cramps. Then he struggles as anyone would not to make them worse because they are unfamiliar and unpleasant and causing him some concern. But the moment that those symptoms start to abate and he begins to feel better, I can almost see him overlaying the diminishing symptoms of illness with his memory of good health. He’s only been away from it a few days and now it’s a template he can hang onto, drawing himself nearer to normal with the simple confidence of its being his natural and typical state.

These things interest me, because the experience of chronic illness is so different. Last Friday was ME/CFS Awareness Day, apparently, and thinking about what it might be useful to make people aware of, it’s the effects on a person’s soul (if you like) of ongoing illness that are so often misunderstood. When you have an illness like CFS, you are at the mercy of a lot of symptoms which, if suffered in isolation, as Mr Litlove suffered some of them, are quite normal and readily overcome. But the effect of CFS is to hold you hostage in illness and therefore also in that anxiety state, with symptoms refusing to go away, and new ones popping up all over the place, and no diminution to give you hope that wellness will return. As the days stretch into months and then years, you forget what normal looked and felt like. You have only memories of illness and fear and they increase every time some fresh hell occurs to you. Anything stressful is that much harder to deal with because the inner ‘pint pot’ that contains stress is already half full. What kind of a monster would I have been if I’d told Mr Litlove that his stomach cramps were all in his mind, and that he should stop whining about them and just manage the best he can? And yet that’s what a lot of CFS sufferers get told, and mostly from the medical profession. Oh, doctors might couch it in more neutral terms, but often with the force of their indifference, it’s what they imply.

I last saw a GP back in February with the usual range of things that were not in themselves worrying, but were dragging me down because they came all at once and hung around far longer than necessary. I had the throaty/chesty-thing I’d caught the previous November that was still recurring (mostly gone now), styes in my eyelid (still got those), and a range of perimenopause symptoms which were making the CFS worse (they’re not going anywhere either). The doctor told me that these days they ‘didn’t think CFS was all in the mind anymore – there’s definitely something there.’ But that ‘no one can cure you so don’t believe anyone who says they can.’ Just pause for a moment here and consider that I have had chronic fatigue syndrome for almost 20 years now. I lost an excellent career to it and live a much reduced life; I’ve visited my son in London once in the four years he’s lived there; I have all kinds of skills I would love to contribute to my society but cannot. And this is what the doctor thinks to say to me? That I should give up on the thought of getting better? (I relate her words to you verbatim, with nothing added or taken away.) In fact, there are things that you can do to help with CFS, but the NHS is about 15 years behind, and the tactlessness, not to mention unhelpfulness, is quite breathtaking. I must admit that I was annoyed, and I felt determined to make the NHS do something for me. I’ve never complained to a doctor about the lack of help or support in all these years, or demanded testing or any form of possibly experimental treatment. I really felt they owed me.

However, squeezing something out of the system is not easy. I asked if I could be referred to the CFS centre at Peterborough (about 30 mins away), but the doctor refused on the grounds that I was probably doing all the things they might suggest already. Which was pure assumption because she asked no questions. So then I asked whether I could have CBT counselling, which I had seen advertised widely as a new NHS service. The doctor was not optimistic but said she would put my name forward. Naturally nothing happened, and I presumed that the doctor had forgotten about me the moment I’d walked out the door. So imagine my surprise when an appointment for an ‘assessment’ came through last week.

The assessment was an other-worldly experience. I drove to the far side of the city and found, in the middle of the wilderness beyond the outer ring road, a dilapidated collection of buildings that held the breathless silence of a ghost town. It was as if I’d stepped back in time to 1955 and been sent to the ramshackle remains of Bletchley Park. Half the buildings were derelict with broken windows and overgrowing foliage, as I found in my tour, having taken a wrong turn which proved impossible to undo. I had to exit the complex and come in at the front again. When I did locate the building I required, it seemed completely empty. Eventually a young woman came to find me and take me to her room. We passed a number of rooms off a corridor, some set up like classrooms, others just empty spaces, but everything seemed decades old and abandoned. However, something was working: the heating. According to the young woman, the therapists had been freezing all winter, asking if the heating could be put on, and now that the weather had finally warmed up, someone had flipped the switch. In consequence I felt I was being cooked. It was so hot in that room that I actually had to ask if I could leave and walk up and down the corridor for a moment. Really, it was almost unbearable.

But we sat and sweltered through an hour of questions. I had gone in asking if I could receive CBT for my phobias. In decreasing order I experience quite extreme anxiety and fear of: medical treatment, travelling and socialising. The latter I’m not exactly afraid of, but I find it exhausting because so often being social means a certain level of performance. By the time I left, we had agreed that I would receive CBT for my phobias. The only ‘decision’ I’d made was to have this CBT online rather than one-to-one, so why I’d needed to be assessed, I had no idea. In retrospect, I suppose that the NHS waiting list for treatment is so long that an assessment is required to see if you’ve become a risk to yourself since the initial referral. If I’d wanted one-to-one treatment, I’d have had to wait another eight weeks. I have to say my heart went out to anyone who wanted to use this service who was really at the end of their tether. It would be enough to push you over the edge.

So I left the tropically heated ghost town behind me and returned home. A few days later I was invited to sign in to the service and having done so was instantly sent an online questionnaire to fill in that was essentially all the questions I’d been asked in the assessment. This was to ‘match me’ to a therapist, clearly not the young woman I’d met, who was also clearly not able to pass on the details I’d given her (though I should point out that she was very nice and doing the best she could under trying conditions). So this is the NHS: hobbled by administration, cumbersome and complex and slow, with the resources that make you think you’re living in a third world country. There must be better parts of it than I’ve seen this past week; here’s hoping I’ve just had a less-than-ideal experience.  I mean, my normal experience of therapy has been to ring up a therapist, have a chat on the phone and then make an appointment. That’s it. Well, I guess we’ll see what happens next.

What, then, to take from all of this? Well, I suppose I’d like to send a shout out to all those suffering from CFS for the Awareness Day because it’s a pig of a condition that still has a lingering stigma. But I’d like to to extend that greeting to anyone suffering from an ongoing chronic condition, who feels like they have exhausted the patience of their doctors, but who is anxious and fearful because managing life around ill health is all that can be done. Mr Litlove is one of the lucky ones. If you fall ill and it’s a passing thing, just a part of wellness as it were, then you are very lucky.  And if you are that lucky, don’t assume that other people who can’t do what you can do are lazy, morally weak or malingering. No one wants or chooses to be ill; it’s always distressing to experience. And finally, what on earth are we going to do about the NHS? Having come up close to it, I’m under the impression that its inner chronic fatigue is worse than mine.