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.

Snooping, Blinking and a Controversial Chair

As you may remember, while my eyes have been troublesome, Mr Litlove has been reading to me most days after lunch – a sort of bookish siesta. This has meant picking out books that we’re both interested in, which in reality has meant non-fiction, and mostly psychology studies. Earlier this year we read two related books that couldn’t have been more different.

Snoop by Sam Gosling had an intriguing premise. What Your Stuff Says About You, the subtitle reads, and essentially, it’s about decoding the objects people possess in order to gain psychological insight into them. It’s what most of us do when entering the room of a new acquaintance for the first time, casing the joint to see what kind of books, pictures, music the new friend owns; the fact that Gosling’s research students prove you can make a pretty swift and accurate personality assessment on this basis seems to show there’s more to it than meets the eye (see what I did there?). Gosling proposes that daily clutter can be categorized three ways, as an ‘identity claim’ (things we’re proud to have reflect on us), a ‘feeling regulator’ (things that arouse emotion or contain special memories) or a ‘behavioural residue’ (the overflowing laundry basket that says you’re a slob). Then he introduces the reader to the five big personality traits – openness, conscientiousness, extroversion, agreeableness and neuroticism – and shows how objects can be character markers of these traits.

And that’s about as far as we got before we abandoned the book. There were a number of problems that stymied us (okay, mostly me) and that forced us to give it up in the end. The first is that, in the history of crossover non-fiction literature there are few academic authors who are quite as evidently pleased with themselves as Dr Gosling is. This is a bit off-putting. The book begins with him showing off his amazing skills to a television producer who has sent him a box of items from the room of a mystery person. From a small tube of skin cream, a hairbrush, a scratched CD of dance music and a photo of a sink area, Dr Gosling deduces an Asian male in mid-to-late twenties who is probably gay. What seems important here is that all this is for the pilot episode of a new program about snooping that would have a role for an expert in such matters (guess who?).

But as we get more examples of Gosling’s prowess, I did begin to question it somewhat. Gosling gives us the example of a large seagull mobile hanging in the office of a research collaborator that catches his eye. What does this tell him about his colleague? What may he deduce from it? After much pontification via the strategies of Hercule Poirot, he decides that the seagull was probably linked to a fond memory or a meaningful event and that it helped his colleague stay calm and focused. When asked, the colleague said she’d bought it at a conference at Stockholm and used it ‘to stop tall people standing too close to her.’ Conclusive, no? No. Dr Gosling helpfully points out that you can’t ever expect one object to tell you everything about a person, and the chances are you’re going to be wrong more than you’re right. And this was the problem with all his argumentation that I heard; it was dilatory, digressive and far from clear. He just couldn’t nail his points.

It was about now that my life began to seem very short and precious to me.

So I had a snoop of my own in Dr Gosling’s acknowledgements and found a very long, fulsome expression of gratitude to his editor and the hours they spent side-by-side writing and rewriting, to the extent that he felt she was a ‘co-author’. Which told me that Dr Gosling had probably got his contract on the TV interest and the high concept and then struggled manfully to write the thing. Of course, in all fairness the problem with a DNF is that it might have become brilliant in its later stages and entirely fulfilled all its initial promise. I don’t know; I never got that far. But maybe that editor whipped him into shape by the end.

Anyhoo, we decided to swap to the book that had first drawn attention to the ‘science of snooping’ and given Gosling his break: Malcolm Gladwell’s Blink. Blink is a book about snap judgements and the way they can be more accurate and helpful than second, third and fourth thoughts. Gladwell opens with a marble statue bought by the Getty Museum, supposedly dating from the sixth century BC. The purchase took place after a cautious 14-month investigation by art experts, and then the statue went on display to full fanfare. At that point the trouble started, as other experts and dealers and people from the art world came and looked and felt in their gut that something just wasn’t right. The Getty took the murmurs of uncertainty seriously and further investigations were made. And oh dear, it turned out that the kouros ‘didn’t come from ancient Greece. It came from a forger’s workshop in Rome in the early 1980s.’

So, Blink is a book about the way that our cautious, thoughtful brain can be confused and our quick, grasping one can be clear-sighted. It’s sort of an easy version of Daniel Kaufman’s Thinking Fast and Slow, with extra jolly anecdotes. Because say what you like about Malcolm Gladwell (and I believe some people do), that man has a genius for exploiting the exemplary anecdote. His arguments throughout this book were beautifully made, utterly lucid and persuasive, and consistently interesting.

He moves from the frivolous to the serious and stops at various stations of the cross in between. Pausing at researchers working with five minute videos of couples from which they deduce the likelihood that the couple will stay together, through Warren Harding’s truly disastrous presidency (yes, there are precedents!) which he won almost entirely because he looked the part (exactly like the butler from Downton Abbey, in case you’re wondering), through the madness of market research. Take the rivalry between Pepsi and Coca-Cola and the television adverts Pepsi ran in the 1980s that showed people off the street taking a sip of each drink and declaring Pepsi the nicer of the two. Coca-Cola, rattled, ran its own blind tests and found that 57% of participants did indeed prefer Pepsi. Horrified, they altered the secret formula to make the drinks more similar – and released the product to consumer outrage. Their loyal customers hated the new drink and it was rapidly taken from the shelves never to be seen again. The thing is, what might be nicer on the basis of one sip (because it’s sweeter) is not necessarily nicer to drink at length. The sip test turns out to be misleading.

There are also more serious sides to the book, considering the use of snap judgements in combat situations and in the case of four white officers shooting a lone black man in the Bronx in February 1999. The man was entirely innocent of any crime, and the object he had withdrawn from his back pocket as the officers approached him turned out to be a wallet, not a gun as they had assumed. Gladwell looks at this incident from the perspective of a ‘mind-reading failure’. We have them all the time, instincts that arise and tell us someone is hostile or angry or something else altogether, drawn from another person’s facial expressions and body language. But police officers have to act regularly on those instincts in life or death situations, and sometimes they have terrible results. When you have so much adrenaline pumping through your system that you literally cannot tell the difference between a gun and a wallet, I think that’s a pretty good argument for not arming your average patrol cop, but what do I know?

So, all in all, this turns out to be a book that is just as cautious about snap judgements as it is congratulatory of them. Essentially, Gladwell is carving out a position in which thinking fast is a good idea, and shading in all the areas in which it gives misleading (sometimes disastrously so) results. Essentially, the issue boils down to experience and expertise. The more time you have spent studying something, and the more experience you’ve had in judging and then weighing the results of that judgement, the better your instincts will be.

This does not mean that when we are outside our areas of passion and experience, our reactions are invariably wrong. It just means that they are shallow. They are hard to explain and easily disrupted. They aren’t grounded in real understanding.’

Which, in an age that has become ‘fed up’ of experts, is something we should probably all hear.

Finally, then, a little blink test of my own. Below is a chair that Mr Litlove has recently finished after the style of Scottish architect Charles Rennie Mackintosh. Do you like it or not? I do, but Mr Litlove doesn’t. What does that say about us, I wonder?

Forty Great Books By Women About Women

Last week my friend sent me a link to a list of 40 Books Every Woman Should Read in Red magazine. It seemed such an odd, eclectic list that it has tempted me to write my own. But without bullying modal verbs. Below are 40 books written by women in the 20th or 21st century that have something to say about being a woman, and I think they are all very good books. Please feel free to add your own suggestions in the comments (my list isn’t especially diverse, for instance); I’d love to hear about your favourites too.

1. The Blazing World by Siri Hustvedt. Brilliant account of the plight of the woman artist.

2. A Gift from the Sea by Anne Morrow Lindbergh. Hard to believe this meditation on women’s ability to take on responsibility to the point of overwhelm is fifty years old. It’s still so pertinent.

3. Cheri by Colette. Surely one of the best novels ever about a woman growing too old for love.

4. Age of Innocence by Edith Wharton. Pulitzer prize winner about a disgraced woman’s uneasy return to her social tribe.

5. Ghosting by Jennie Erdall. A beautiful piece of creative non-fiction about the art of ghostwriting.

6. My Brilliant Friend by Elena Ferrante. A portrait of tense but fierce female friendship.

7. The Bloody Chamber by Angela Carter. The inimitable Carter’s take on classic fairy tales.

8. Operating Instructions by Anne Lamott. Poignant memoir of life with a newborn.

9. Memoirs of a Dutiful Daughter by Simone de Beauvoir. So much I could have picked by Beauvoir, but in the end I opted for her first volume of memoirs: mapping the creation of a female genius.

10. The Pastor’s Wife by Elizabeth von Arnim. The funny, bittersweet story of an ordinary marriage with all its trials and tribulations (and bad childbirth experiences).

11. Lying by Lauren Slater. Controversial memoir about epilepsy and the author’s tendency to fabulate.

12. Women of Algiers in their Apartment by Assia Djebar. This actually isn’t my favourite Djebar but she’s hard to get hold of in translation. She’s a brilliant writer on Algerian women’s experience.

13. How To Be Both by Ali Smith. A truly joyous novel about love and art.

14. The Orchard by Drusilla Modjeska. I’m always trying to persuade people to read this. It’s an entirely original piece of creative non-fiction, not to be summed up in a sentence!

15. A Wrinkle in Time by Madeleine L’Engle. I’m not a big reader of children’s books as an adult, but this one really transcends its boundaries. The story of a young girl who hunts the galaxy for her lost father.

16. A Lost Lady by Willa Cather. The American Madame Bovary.

17. This Is Not About Me by Janice Galloway. Hilarious account of a gruelling Scottish childhood.

18. The Bluest Eye by Toni Morrison. Powerful and disturbing story of an abused foster child in the Depression Era.

19. Murder at the Vicarage by Agatha Christie. How many novels can you think of that feature as their heroine a brilliant elderly lady who knits? Watch Miss Marple wipe the floor with Inspector Slack.

20. Reading Women by Stephanie Staal. The author audits a class on feminist texts in the early stages of her marriage and new motherhood. It’s beautifully done.

21. Sherazade by Leïla Sebbar. A teenage Algerian runaway in Paris on a search for her identity.

22. Martha Quest by Doris Lessing. Coming of age in South Africa with a hated mother and a burning desire to write (yup, pretty autobiographical, Doris).

23. The Silent Woman by Janet Malcolm. Brilliant account of Sylvia Plath that teases out the hidden agendas in those who witnessed and wrote about her.

24. The Valley of the Dolls by Jacqueline Susann. Modern classic novel about women struggling to make it in Hollywood. Harlequin Romance meets Emile Zola.

25. Bilgewater by Jane Gardam. Beautiful coming of age novel.

26. The Argonauts by Maggie Nelson. One of the most original and extraordinary accounts of motherhood you’ll ever read.

27. Excellent Women by Barbara Pym. One of my all-time favourite novels about Little England in which spinster, Mildred, watches the machinations of her attractive, trendy neighbours.

28. My Name is Lucy Barton by Elizabeth Strout. A recent edition to my personal greats. A novel about mothers and daughters and dysfunctional families.

29. The Group by Mary McCarthy. Following the lives of a group of friends post-Vassar in 1930s America. Was a scandalous success back in the day, still a great novel.

30. How I Live Now by Meg Rosoff. Teenagers abandoned home alone cope with World War 3. I’m not sure I’ve ever read anything else quite so visceral.

31. The Vanishing Act of Esme Lennox by Maggie O’Farrell. The story of a woman abandoned in a psychiatric institute for her entire life, for not behaving in the ways her family thought fit.

32. The Good Wife by Sue Miller. Can mothers have sex lives? Sue Miller’s gripping, ferocious novel about why they can’t.

33. Desirada by Maryse Condé. Classic novel about a woman’s journey of redemption from Guadeloupe to France to the United States, away from a neglectful mother and in search of her father.

34. The Cazalet Chronicles by Elizabeth Jane Howard. A slice of beautifully written social history in this saga of a middle-class family during World War Two.

35. Sexing the Cherry by Jeanette Winterson. Funniest historical fiction ever about a giantess.

36. I Capture the Castle by Dodi Smith. Gorgeous coming of age novel about two sisters seeking love and money.

37. Fierce Attachments by Vivien Gornick. A wonderful memoir about never being able to cut loose from a Jewish mother.

38. Alias Grace by Margaret Atwood. Murder and madness in this historical novel. Was young servant girl, Grace Marks, a cold-hearted killer or a vulnerable child just trying to survive?

39. Orlando by Virginia Woolf. Gender-bending, cross-dressing historical romp by the one and only Woolf.

40. Aftermath by Rachel Cusk. This was a very controversial memoir about divorce when it first appeared. Hopefully now the furore has died down it can be read for the beautiful, expressive book that it is.

 

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.