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.

 

 

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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.

Agent Hunter and other stories

So, where were we? Ah yes, we had finished the Barbara Pym part of the narrative concerning Mr Litlove and we were moving onto the Stephen King part of the narrative that involves me.

But first! Let me tell you about Agent Hunter. You may recall before Christmas I mentioned a novel I was thinking of selling, and I probably grumbled about the selling part because it’s so not fun. Any of my blog friends who’ve been around since I started blogging may remember that we’ve been here before. Back in 2008 I started working with an agent on non-fiction ideas. Now she was a lovely agent and I very much liked her; the problem was a cultural one. I was still theoretically teaching French (though on sick leave) and undoubtedly my mindset was very academic. I just could not put a proposal together that sounded the way the agent wanted it to sound. She even sent me a proposal under cover of darkness that she thought was a good one and between you and me, I didn’t think much of it. It was very vague, very unstructured and by this point I was beginning to feel as if I really ought to write something rather than plan endlessly to write something. We drifted our separate ways, with no hard feelings but I didn’t feel much the wiser about the commercial world.

The thing about working with an agent is that it’s a very, very strange relationship. When you start to write commercially an agent is presented as the Holy Grail. Find an agent, we are told, and then you have someone who believes in your work and who will sell it tirelessly to big name publishers like Penguin and Bloomsbury. And because the ratio of literary agents to people who have written a book is atrocious, the odds of getting an agent are slim. So, even more frenzy is whipped up. It’s impossible! But you must do it! And when you do you will be validated forever!

Ah well, life is never like the movies. I had a very nice agent. She liked my writing well enough and I liked her, but we couldn’t make it work. This is because having an agent is a lot like marrying a virtual stranger with whom you’ve shared a couple of internet dates.  The splicing together of agent and writer is such a high pressure, hardscrabble affair that you never get to know the really important things about one another until it’s too late. Then of course the commercial publishing world is such a viper’s nest that every new book becomes another hurdle in the agent/writer alliance. Most of the authors I know seem to spend their time switching agents.

Anyhow, I digress. When I began looking for an agent again, I have to admit that my heart wasn’t much in it, my confidence was low and my desire to trawl through the internet even lower. So when I saw that a site called Agent Hunter was offering a trial period for an honest review, I gratefully signed up. And thank goodness I did. This site is fab. You can search it for agents who are actively looking to build up their client list; you can search for publishers who don’t require an agent at all. When you find an agent there are often a lot of helpful interviews included that tell you what the agent is looking for. I’ll pass on the information right now that the vast majority want a chilling psychological thriller with a great twist. This makes my heart sink, but never mind, we’ve established that I’m jaded. The point is that in half an hour of my time I had a list of seven possible candidates with notes about their specific requirements in terms of submission materials. Sorted!

And then, not quite. Oh dear friends, I have been up and down the streets and around the houses with this question of an agent. As good as the Agent Hunter site is, it does not have a search criteria for agents who are willing to take on the medically challenged. And I keep imagining scenarios in which I have to explain that no, I cannot charge up and down the country giving author events, and no, I cannot turn my galley proofs around in 24 hours after six months of waiting for them because the editorial department has mysteriously got behindhand. In the wild dating world of the agent, I am not at all an enticing proposition as a go anywhere, do anything kind o’ gal. I’m more your refuse everything kind o’ gal.

I had an okay January, and it was definitely a busy one. Part of it involved doing interviews for an article  with friends of mine, one a poet, one a painter, about their different kinds of creativity. This was a lovely experience with two incredibly talented women. And then we were more booked up socially than usual. Towards the end of the month I saw my eye specialist and he was pleased with me; he decided I should try to come off the medication. I skipped out of the surgery… and then found myself straight back in it a week later, with keratitis back in one eye and a stye in the other. I’d never had a stye before but it didn’t bother me. The second one that came up did. And when I developed a third, all in the same eye, I was distinctly unhappy about it. I sort of had this feeling that CFS would form an unholy alliance with the perimenopause and February was all about that. I asked my eye specialist if hormonal imbalance could be at the root of the problem and he said, for sure. Apparently changes in hormones can completely alter the chemical composition of your tear film – hence the ongoing mayhem. By this point I also had a mouthful of ulcers, sciatica and a lovely new symptom involving muscle spasms and twitches up my diaphragm and esophagus. Think that’s nothing to do with perimenopause? I found this very interesting article that did make me feel better, in a dispirited kind of way. There was much in it that made sense to me, not least because I’ve always felt that my own brand of CFS has a lot to do with my hormones.

When I hit menopause I can go get myself some lovely HRT and feel better. But until that point, which may be a couple of years off… Well, extreme forms of dating are not very appealing. When I laid this problem out to my friend the painter, she was wonderfully clear sighted about it. She reminded me that I was selling the book, not myself, and that if anyone wanted the book, then they’d have to take its owner no matter what state she was in. ‘Litlove,’ she said, ‘we are just too old to be anything other than totally honest about the people we are.’ Which I absolutely agreed with. I think a lot of my problem here is that I did SO MUCH hoop-jumping in the Cambridge University years that my spring is sprung. I do believe we all have a hoop-jumping quota in our internal systems and once it’s exhausted, there’s no going back. And then she said that maybe the book deserved a chance to have its own life as an artwork. Oh, she is one clever woman.

So I am still just about in the game, though I promise faithfully that this is the last time I will mention this book as it’s a tedious topic. But I did promise Agent Hunter their review and it really is an extremely helpful site that I would like to recommend. Next time, I’ll talk about the books I’ve been listening to.

 

 

And After Another Long, Unexplained Absence…

The new edition of Shiny is out! – but you probably already know this, as we went live last Thursday and I am only now managing to produce a blog post.

SNB-logoAnd why is this, I hear you cry? Well, let me give you the details.

Casualties so far in 2016

Mr Litlove

Trapped nerve in shoulder.

Throat infection.

Monster cold from family party at Easter.

 

Litlove

Uveitis in eye followed by WEEKS of chronic eye strain.

Cystitis once.

Cystitis twice.

Yeast infection from antibiotics.

Mr Litlove’s cold – though I caught this mildly and it is negligible in the scheme of things.

Abscess in tooth, resulting in more antibiotics and the prospect of an unpleasant trip to the dentist.

 

This last one was the worst. I came home and wailed that this was AWFUL. I’d barely got past the last batch of antibiotics and now I had another and the supremely dreadful choice between root canal work or extraction.

‘But this is great!’ said Mr Litlove. ‘You’ve got something definite and it has a name and they know how to fix it.’

Well, I’ve had a good run at health issues with names so far this year and frankly, you can keep them. I’ll take my nebulous chronic fatigue any day, which usually leaves me safe in my own home and without the need for medical intervention. Ten to one I’ll have the tooth extracted, as it’s been nothing but trouble since I concussed the nerve and the root canal work may well not be entirely successful. My mother assured me most comfortingly that an extraction is the sort of thing that’s worse in anticipation than in actuality and it ought at least to be quick. The dentist did warn me I wouldn’t be able to chew so well on that side of my mouth, but I pointed out I hadn’t chewed on it for the past two and a half years anyway. So. Now I just have to hope the antibiotics work (they are working, just more slowly than I’d hoped) and that I can avoid a second yeast infection. Sigh.

It’s been kind of Mr Litlove to keep me company in ill health. We were sitting on the sofa, staring at the walls not that long ago and he said: ‘We ought to be living the dream. We have an idyllic lifestyle and all we’ve done so far this year is be ill.’ ‘Tell me about it!’ I said. We are as usual oddly opposite. Mr Litlove is someone who can’t be ill quietly; there is never any need to ask him what the matter is. Whereas I get more still and more silent the worse I feel. He said he found himself wondering at one point if he’d caught chronic fatigue from me (I thought it was a bit late in the day for contagion) or whether we should have the house checked for poisonous gasses. I can understand Mr Litlove’s chain of events easily – he’s in the middle of a huge life change after all, which is tiring, and he got the throat bug from going back and forth to the doctors for me, and then his cold from a family party where it was rampant. He thinks that my run of illnesses have been provoked by fighting off this abscess for a while, and the dentist did warn me the swelling probably wouldn’t go down completely because of the scar tissue, since it had been there some time. I don’t know. I like it as a theory and wish it were true, which means I distrust it. What if this is just all about my heading-towards-fifty-hormones? What if this is the new reality?

On a more positive note, I have recently been able to read a bit again – up to two hours a day if I take plenty of breaks to rest my eyes. Which was absolute bliss after such a long, long drought. Before that I’d been forced to entertain myself with Woody Allen-esque scenarios in which I imagined travelling around the different departments of my body. So I might visit my brain to find the operatives bored and cranky, complaining there’s not enough to do. To which I would point out that the place is in a mess, half the cooling fans have burnt out, there’s litter everywhere, a good clean would make a lot of difference, etc. But they tell me that it’s no use, they can’t get any help from Maintenance. So I then visit Maintenance, where they suck in air through their teeth and say it’s a difficult time and what with all the recent problems, resources are low, maybe if they could get more supplies…? So I go to Accounts and Distribution, who are up in arms; they really need more nutrient income but they keep being ram-raided by that criminal, Stress, who makes off with all the good stuff the moment it’s delivered… And just recently I had a little fun with antibiotic ninjas storming the besieged Northern Gum Territories.

Well, you have to find amusement wherever you can.

This is true more than usual this week as Mr Litlove, now pretty much fully recovered from his cold, has gone away to Devon for a chair-making course. We’d agreed much earlier in the year that he’d go alone as a five-hour car trip is well outside my comfort zone at the moment, and normally I don’t mind a week on my own to watch what I like on telly and eat chicken risotto every night. But he’s only been gone an hour and I am missing him dreadfully. I think I’m a little lower in spirits than usual, what with this run of illnesses. But hey, I’ve hardly read any of the reviews in this edition of Shiny – and I must mention the kindness and understanding of the other eds, which has stretched beyond the pale this year! – and I’ve been feeling too rough even to look at what’s going on in the blogworld lately, so I could catch up. And I can make myself chicken risotto and watch an old movie I’ve watched so many times that I don’t need to strain my eyes on it (and I prefer rewatching movies to seeing them for the first time). And I have Elizabeth von Arnim’s The Solitary Summer by my side to read a few pages at a time, because there was a woman who really knew how to make the most of time alone. So I will do my very best to avoid a pity party.

If you happen to stop by, tell me what you are doing this week. I’d love to know!