The Loveliest Month

It strikes me as a bit cheap on the part of the weather gods that we are only allowed one May in a calendar year. I love it so; the crisp new leaves bursting out of their buds, long, pink-tinged evenings, soft, mild light at dawn and dusk with vibrant blue skies in the bright stretch of the day. Just the right amount of heat. Yesterday was the first day that Mr Litlove and I could enjoy sitting outside in the garden. And so we did our yearly inventory, reclining on garden chairs with cups of tea, making our way around the borders plant by plant as if they were schoolchildren in class, deciding how each was coming along, whether they needed help and in what form.

the gorgeous Manteau d’Hermine

My main worry was a philadelphus, a gorgeous version called Manteau d’Hermine, which had been squeezed on either side by some rather boisterous ferns (and this is the only definition of ‘leaning in’ that I will countenance). So I had my eye on that, and on Mr Litlove generally, who sheds his gentle, mild-mannered nature to turn rogue with a pair of clippers in his hand. Anything that looks as if it might commit the crime of ‘getting beyond itself’ risks a severe scalping despite all my pleading. And for the first time in my life, I thought to myself, my goodness how incredibly middle-aged we have become. Normally, on the inside, I feel about 17, but there I was, regarding plants I had seen grow from seedlings into this mature garden, and it seemed so long since it had been just a vision in our minds.

When we first moved into the house the garden was a long, thin, isosceles triangle whose only beauty was a large cherry tree, all too near to the back windows. One dank and chilly autumn day, Mr Litlove hired a rotavator and dug all the scrubby, weedy grass up, shoulders straining against the handles, wellies sinking in the mud. Early in the afternoon there was a power cut, and when he went into the kitchen, now shrouded in darkness, the kitchen clock still read half past two. Mr Litlove then congratulated himself on having finished the job with so much of the afternoon still ahead of him, and I felt quite confirmed in my belief that he was an undiagnosed dyslexic. It’s funny to think we hadn’t been married that long then, three or four years at that point. We bought a climbing rose, the luscious Mme Alfred Carrière with clotted cream blooms that blushed charmingly pink as they burst their buds. And in the supermarket, my son – then an angel-faced toddler with white-blonde hair and dark blue eyes – picked out a red rose he liked the look of. I didn’t hold out much hope for it, but both plants grew and flourished on the sunny south-facing wall.

Mme Alfred Carriere in all her glory

Then we decided to have an extension on the house, and a garage and workshop at the far end of the plot. The garden shrank to a lop-sided square and the plants suffered. The cement mixer took up residence in the middle of a flowerbed, and bushes started to die mysteriously, until I put two and two together and stopped providing the builders with so much tea. We had to move the red rose and feared it had died, but the white fought gallantly against the chaos and flowered vigorously, scattering velvet petals over the garish headlines of The Sun that the workmen read in their breaks. Mr Litlove had his first stretch of unemployment, the difficult one, where we assured each other we would manage fine, while mentally totting up columns of figures in the restless small hours of the morning. We weren’t particularly fine at all, for I was beyond tired and working hard, both of us too aware that mine was the only incoming salary. And we didn’t like each other much, having swallowed all sorts of things we should have said in those anxious, frantic years of early parenting and new careers. Things were coming to a head, though we didn’t know it then. Instead, Mr Litlove used his time to lay a patio, and to pave the area outside the kitchen, and to construct a beautiful winding path in a herringbone pattern of grey brick.

Several years later, when Mr Litlove was made redundant for the second time, our lives had completely turned around. The crisis had passed and now I was off work too, the first of three years I would take out with chronic fatigue. I can remember the feel of the grey brick path beneath my bare feet as I ventured outside after months laid up indoors, still weak and unwell but silently comforted by the beauty of the flowers, the orange blossoms of the philadelphus, the dancing buds of the fuchsia, the bough of the white rose, heavy with unfurling flowers, that was big enough now to reach out to me from its spot on the back wall. And the red rose we feared lost was starting to grow again, its tentative feelers offering hope. This time around Mr Litlove painted the house. To the extent that I believe in past lives, I feel convinced he must once have been a Lord of the Manor. It would be such a perfect job for him, to have a whole estate to tend to, one that he would survey from the saddle of a fine black stallion, issuing grand orders about the guttering on his tenants’ cottages. He would have married a version of me, one whose nature would have led her, not to teach, but to strap on a bonnet and go visiting the sick and the poor. From whom I daresay Regency-me would have caught diptheria and died. So there is much to be said for the 21^st century and having reached the era of self-indulgent middle age.

Imagine him weatherbeaten and mossy, with a bird on his head, and you’ll have our version

The last change in our garden was the arrival of Hermes – or Mercury, I never know which to call him. He stands on one leg as if he had just bowled a googly, though one arm is raised above his head with a beckoning finger (happily, the first), while his other hand holds a strange implement the size of a very large spatula, which I believe may be the Greco-Roman prophecy of a television ariel. He came from the grand and lovely garden of Mr Litlove’s grandparents, and I vividly recall his arrival in the back of a moving truck. Two men arrived with him, papers in hand. ‘One small garden statue – Mercury,’ one of them read. ‘I’m not sure ‘e made it intact, luv. Ever since Bury we’ve ‘eard somefink rolling around in the back.’ His mate tipped me a wink. ‘Makes you wonder what dropped orf.’ I confess I held my breath as they went to unload him, fearful of the ribaldry he might unleash in the delivery men, and so I was most relieved when the loose item in question turned out to be the television ariel, which has never quite sat right in his hand ever since.

And now here we were, all these years later, with our son grown, and the university behind me, but still together and (for me) in better health than I had been in pretty much all that time. ‘I can remember planning this garden,’ Mr Litlove told me, ‘imagining what it would look like as I sat here, or stood in the kitchen at the sink. And it looks very much as I hoped it would.’ And I thought of our entwined lives that had suffered their own versions of frost and drought, disease and blight, but were still growing strongly together. I would never have imagined the road we would take to get here, but yes, our life looked pretty much like I’d hoped it would. How beautiful, how precious, how terrifying that felt.

In Good Company

‘There is always a moment in the life of young people,’ Colette wrote, ‘when dying is just as normal and seductive to them as living, and I hesitated.’ She was 28 at the time to which this quotation refers, and had sunk into a complex and unexplained illness. Later biographers have wondered whether her philandering husband had given her some unpleasant disease, but although she doesn’t expressly say so, Colette knew she was suffering just as much from the philandering. She had tried to cover it up and present a brave and invincible front, but it was by no means the truth of the matter.

In the middle of sitting for her portrait with the painter Jacques-Emile Blanche, she heard carriage wheels at her door and spotted Willy bidding a loving farewell to the woman who dropped him off. ‘She had real convulsions,’ the painter wrote, ‘hysterical crying fits, one had to lay her on a sofa and bathe her temples with cologne because she believed herself abandoned forever.’ In later life Colette would talk about her propensity for jealousy, ‘the only suffering we endure without ever becoming used to it.’ She had married very young, and been taken from a doting and possessive mother to become the neglected wife of a manically social older man who had no intention of changing his ways. If such a thing as emotional culture shock exists, Colette had it.

To add insult to injury her husband, Willy, ran a publishing factory, signing his name to a host of books and articles produced by other writers. At his suggestion, Colette had produced a 600-page manuscript of lightly fictionalised adolescent adventures. Willy had been disappointed in it and left it to languish in a drawer. In years to come it would turn out to be the first bestseller that France had ever known, but for now he rejected it out of hand. This double betrayal left Colette horribly miserable, and she succumbed to an illness it would take her the better part of a year to shake off.

Not long after she turned 29, Simone de Beauvoir was admitted to hospital with severe pneumonia and a collapsed lung. The other lung was also damaged, and if it failed to hold out, she would die. She was suffering from emotional and creative exhaustion, having worked hard and played hard ever since she had met Sartre, a little less than a decade earlier. She was teaching, writing a book of novellas (that would never get published) and maintaining a taxing social life. She and Sartre had fallen in love but Sartre’s philosophical commitment to freedom meant he did not believe in marriage. Beauvoir, deeply romantic but entranced by the idea of freedom after her restricted and conventional upbringing, had taken the very brave step of embracing his beliefs. For a woman in this era, whose value would have been determined by her marriage, we cannot underestimate how courageous and subversive this act was.

But in practice, the commitment to emotional and sexual freedom was extremely difficult to maintain. Shortly after they had embarked on their relationship, Beauvoir became close friends with a young woman she taught, Olga Kosakiewicz. Olga was dazzled by the brilliance of Beauvoir and Sartre and hypnotised by the glamour of their unorthodox liaison. Sartre fell in love with her in a more physical way, and although Olga would always resist him, they moved her in with them and lived a ménage à trois that caused them all great suffering. Sartre told Beauvoir everything, thinking this to be some sort of purification of his soul and a validation of their exceptional love. He told her that with Olga, he ‘experienced alarm, frenzy and ecstasy’ and recounted every detail of what went on between them. Beauvoir wrote that ‘The agony which this produced in me went far beyond mere jealousy’. She wanted to deal with whatever Sartre threw at her, to be worthy of his love. But the comfort she derived from hoping that Olga would be a passing phase made her question the solidity of Sartre’s love for herself, Simone. ‘At times I asked myself whether the whole of my happiness did not rest upon a gigantic lie.’ Her illness grew out of the turmoil these tangled relationships created in her.

I was 28 years old, almost 29, when I fell ill with the viral pneumonia that would become chronic fatigue. Of course, this means nothing at all, it’s simply a coincidence. But I couldn’t help being struck by it, as I was reading the biography of Simone de Beauvoir and Jean-Paul Sartre. Colette I already knew about. Thankfully Mr Litlove was not a philanderer, but I was exhausted by work, and by the new ménage à trois we had with our baby son. When I realised Beauvoir had fallen ill at the same age, I could not help but marvel at the way books continue to offer such unexpected solidarity. For the first time, I realised that that unfortunate episode in my life put me in exceptionally good company. I found I minded it a whole lot less, viewed from that perspective!

Chronic Fatigue Syndrome – In The Body or the Mind?

Is chronic fatigue syndrome a ‘real’ illness or is it the most recent incarnation of hysteria? Ever since chronic fatigue appeared on the scene, it has persistently been labelled a psychosomatic disease. This means that the medical establishment is not searching as actively as it might for a cure, and in any country where medical care is insurance based, there is very little attention or treatment available for what is a highly debilitating condition.

I fell ill in 1997 but wasn’t diagnosed until 2006. In part this was because I had a nasty suspicion it would be chronic fatigue but I’d heard too many cruel comments about other sufferers (particularly in a university setting) to be in any way comfortable with such a diagnosis myself. I can’t tell you how much I did not want to be lumped into that particular group, because it doesn’t matter what you’ve done before, or what kind of a person you are: it’s scary how willing people are to believe that you are ‘avoiding’ unpleasant situations, failing to show the proper moral backbone or downright malingering. By the time I was finally diagnosed, I’d been such a workaholic that the university was quite sympathetic. My family was a harder sell. When my husband rang up his mother to say I’d be taking time off work, she said ‘But isn’t this all in her mind?’ I had spent the past ten years trying to do work I loved and battle an illness that attacked every part of my body. You may imagine how I felt about the suggestion that I was simply neurotic.

But when it came to finding some treatment for myself, psychotherapy was one of the few possibilities. Oh I tried lots of alternative therapies, none of which got me anywhere, although they contained some of the secondary problems I was experiencing. But I knew stress and anxiety had had big roles to play in my falling ill and psychotherapy gave me the best chance of at least managing what I had and coming to terms with it. Without a place to make sense of what was happening to me, and a very sympathetic listener, I don’t know how I would have coped. If chronic fatigue has anything to do with depression, it’s because the illness is so overwhelming and so devastating that it knocks you for six. It has a tendency to attack driven, hardworking people who invest a lot emotionally in what they do, and who are very cut up when they can’t keep doing it. And as I remember all too well, to feel as ill as I did, with no prospect of anything at all that could be done about it, and this stretching out for months, years, into the future, is a pretty depressing prospect.

I’ve been reading Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic by Hillary Johnson, an American journalist who has researched the rise and spread of the illness in America in painstaking detail, and the medical establishment’s failure to take it seriously. Johnson identifies an outbreak that seems to have begun in 1985 in Nevada and then cropped up in Boston, California and New York. The majority of the early cases were middle-class, middle-aged women, and given that they displayed a perplexing array of symptoms and no obvious, simple bacteria offered an identifiable cause, the official decision was that it was all in their minds.

I’ll add another significant factor into this: chronic fatigue doesn’t kill enough people. You have to die to be taken seriously in medicine, and whilst CFS can reduce people to bed-ridden vegetables or just destroy their quality of life forever more, it isn’t enough compared to, for instance, the other illness that was hitting the headlines about the same time: AIDS. Johnson also reports how the government felt there was surprisingly little lobbying by the sufferers of the illness, which is the way that ‘new’ diseases call political attention to themselves, and eventually, research money. No one seemed able to put two and two together that CFS-ers were just too sick and too tired to organise a lobby. Plus, the celebrity cases were not keen to identify themselves with the illness. Johnson reckons that the register of sufferers included James Garner, Robert Wagner, Morgan Fairchild, Cher, David Puttnam, Kirstie Alley and Cathy Lee Crosby, but few spoke out publicly. Cher was reported as falling ill for more than three years after a flu-like virus and another patient declared “I’d like to be in the room when you tell Cher… that her illness is due to ‘unachievable ambitions and poor coping skills.’”

Like just about everything else, medicine responds to public outcry, and if there is insufficient public sympathy, then nothing happens. It also responds, probably most rapidly of all, to the pharmaceutical industry. If scientists develop a drug that works, then the illness can be verified. But to do that, doctors need a simple yes or no diagnostic test, and that has never been forthcoming – it’s a vicious circle. Many people are unconcerned because they think it’s not contagious, although this book argues otherwise, with evidence of many health care professionals falling ill after handling blood samples. And then medicine has a very poor record of giving credibility to illnesses that involve fatigue (a word I dislike as it is so feeble compared to what it wants to describe). Multiple sclerosis was for a long time considered a psychosomatic illness, as was lupus and the Epstein-Barr virus. Doctors are also prejudiced against nebulous, debilitating illnesses in white women with private means (actually, they’re not alone), without being able to see that only women with enough money and sense of entitlement ever make it through the professional contempt and lack of interest to reach a diagnosis in the first place.

So where are we now? This book was published in 1996, and not a great deal has changed, except perhaps public opinion is kinder to chronic fatigue sufferers, and more willing to concede that an illness is involved. There has been significant research into possible viral or retroviral roots to the illness without any conclusive breakthrough, and tens of millions of people are said to suffer with some version of it, men, women, children, regardless of social situation. A significant proportion of them make up the long-term unemployed and the chronically poor. Less than a fifth of cases ever recover, and ‘these patients inevitably describe a series of readjustments or realignments of goals and expectations that would have been unthinkable prior to the onset of their illness.’

I include myself in that category – I’m much better, and I do much, much less, after a long fight against my inclinations. My own experience suggests that it is a disease based in the endochrinal system – adrenal exhaustion triggers a severe immune system response (when you feel ill, that’s your immune system working to evacuate the perceived threat) and because the illness is so intense, the entire hormonal system is thrown out of balance. There is also a psychological component, bound up in the trauma for some of us of suffering the illness, and built into the body’s defense systems which seem then to be on a hair-trigger (as is often the case with other autoimmune illnesses like asthma and hayfever). But given that I’m a smart enough person and ten years in therapy didn’t cure me, I don’t think it’s entirely psychological. There is some biological component involved that has yet to be found. I think I’m one of the lucky ones – for the rest I fervently hope that some solution will be uncovered.

On Not Being Thanked

Mister Litlove and I have decided that we must have come down with a bug this weekend, as we are both feeling under par. But in my heart of hearts I recognise that cataclysmically wiped out sensation as a remnant of the old chronic fatigue, rearing its ugly head. For me, that means an external cause, something out in the world has had a disproportionate effect on my inner world, and it wasn’t hard to track at least one cause back to an unsatisfactory meeting in college earlier in the week.

You all know that I do this part-time study support job, helping out the students who are struggling with their work. Well apparently the three-year trial period I had no idea we were having is up, and it is time to re-elect me to my post. Only the Senior Tutor (and I should point out right away that I like him very much, we are friends and he was very patient and supportive of me when I was ill) needs to ‘regularise’ my job as it is unlike any other. This will essentially mean more work – when doesn’t it? – which doesn’t exactly thrill me.

‘Do you think college council will be willing to re-elect me?’ I asked, bearing in mind that when I began this job, there was much hostility and resistence to it.

‘Council has indicated it would be happy to see greater provision of study support,’ replied the Senior Tutor, which I took to be a yes. But the u-turn in council feeling was not attributed to the time I have taken over the years to talk to the other fellows, and engage in long email exchanges, explaining what I would do and how I would do it, and the huge campaign of diplomacy I have undertaken not to tread on their delicate toes. And then of course, all the hours I have spent actually with their students. But perhaps it had nothing to do with that at all?

It feels wrong to want recognition. It feels sort of demanding and unreasonable. When we were discussing the students and in particular one whom I worked with a great deal at the end of last year, a student who had been predicted to fail and who ended up with a surprisingly good 2:1, I could have thumped the Senior Tutor when he said smugly ‘I always knew X could do it.’ I did not point out that for two and a half years, X had not done it, and it was only after a massive input of my time and energy that the miracle occurred. Because that felt grasping and arrogant and wrong. But surely I counted for something in the process, didn’t I?

It’s not like I want trumpets and balloons and champagne. I would be embarrassed in the face of effusiveness. I couldn’t bear to be fawned over. I’d just like someone to say thank you, and to reassure me that I’ve done a decent job. We got through a whole meeting without coming anywhere close.

I really feel I ought not to want it, but I do. I know without a doubt that part of the reason I burned out as a lecturer was exactly this lack of recognition. Don’t get me wrong, the students are great, and a solid proportion do say thank you to me every year and that’s lovely. But I sort of feel they shouldn’t have to thank me, really, while the people who employ me jolly well ought to. Is that wrong? I have this genius at being invisible, which Mister Litlove attributes to my façade of self-containment. I don’t look or act needy, which is of course a lie; I’m as needy as anyone else, particularly for reassurance. And this new job turns out to be quite difficult and demanding and almost 95% of the time I never get any feedback from my colleagues as to whether their students are working and coping better. I certainly don’t go begging for gratitude because that sort of strategy would completely undermine its results, wouldn’t it? I’m only interested in what people are willing to give freely.

So at the moment the thought of more years of more hard work with the same old lack of recognition is making me feel  tired. But there is a large part of me still deeply attached to college; I like being a fellow and the perks that come with it, like my room and my book grant. I even appreciate students still, despite spending all my time with the most hapless ones. It’s ironic, really, as so much of what I do with those poor, hapless students is reassure them that I see how hard they are trying, and how much effort they are putting in. Their supervisors only look at the results and when they are not good enough, the first assumption is that the students are slacking off. When it is so much more likely the case that they are twisting themselves up in knots trying too hard. Cambridge is such a harsh system, the opposite of nurturing. And of course I’m a product of this system so I try very hard, too. There is probably a lesson to be learned here for both the students and myself, we should all just put in a lot less effort and watch the paradox of increasing returns unfold. But when Monday morning rolls around, and finds you in your workplace again, take a moment to express your gratitude to someone, say it out loud and generously. There’s just not enough recognition around and it has such an energising and clarifying effect. It’s such a small thing that can really make a difference to another person’s day.