The day after her fifty-fourth birthday, my mother and I walk through a field near her house at dusk, a small pair of scissors tied to a long string around her neck. The dogs are on their leads because it’s getting dark and she isn’t brave enough to let them off ‘because of the rabbits’. She has already been signed off sick for a year and three months. As we walk, my mother starts to sing the folk song, ‘She moved through the fair’.
My love said to me
My mother won’t mind
And my father won’t slight you
For your lack of kind
My mother mostly sings songs she learnt at musical theatre college, or Norwegian songs from choir, but this one is different – it belongs to her. The lyrics, and the tune, make her voice melancholic, and more relaxed.
And she smiled as she passed me
With her goods and her gear
And that was the last
That I saw of my dear.
We walk quite far that evening, further than I expect. My mother wants to walk further still, but she is worried about walking back, about me walking back. She is used to negotiating the length of these walks in her own mind, depending on how she is feeling in her body, and the things she still needs to do that day, or even the next day, like go and see her father at the care home, or finish filling out another form relating to her ‘Ill Health Retirement’. It is a careful calculation that, once decided upon, can and most probably will be ruefully ignored – she just has to face ‘the consequences’.
My mother has moved to mid-Norfolk, where the River Nar crosses the Peddars Way, to be near my grandfather, who has vascular dementia and Alzheimer’s. He is convinced she lives in Burnham Market, a posh town near the North Norfolk coast, where no one in our family has ever lived, and none of us could ever afford. My mother will move away from here just as quickly, once he has died of leukaemia. The village she has moved to is an ancient land of crossings. When she first arrived, a woman told her she would be healed by the power of the place itself.
My mother had to reschedule her last meeting with HR because it was at 9 am on a Wednesday.
‘I was in bed all morning,’ she says, as if they should know that someone who is about to be signed off sick forever will never make it to a meeting first thing. It’s like the time she was annoyed at the ME/CFS service, who kept calling her when she was asleep, without warning.
What she means is: I am in bed all morning every day.
‘Dear Dr,’ reads a document on her desktop back at her house, ‘I have muscle weakness in my hands (holding a pen, lifting a kettle) and legs and breathlessness and palpitations on activity are problematic. Processing and translating information is very difficult and slow, which makes research, publication and teaching impossible.’
‘I’ve had enough of my shit,’ she says to me, on our walk. ‘I’m wasted.’
When my mother says she’s wasted, does she mean she feels wasted – ill, fatigued, sick – or does she also mean her working life is wasted, her potential is spent?
A long time ago, my mother sought a diagnosis. Upon relapsing into full-blown illness again, unable to go to her job as a lecturer in History of Design, she has found only more work: phone calls and confusing meetings with HR, days spent compiling documents with names like ‘Letter to Sussex Wide ME service.doc’ and ‘Ill Health Retirement Factsheet.pdf ’. My mother must write her own medical history, over and over again, like a doctor, except she is also the patient.
‘ME also causes severe impairment of my cognitive functioning including extreme difficulty in focusing and concentrating for any length of time on a task, conversation or text,’ she writes. She suffers with ‘impaired and interrupted sleep and extreme irritability and mood swings’, wakes extremely fatigued, has ear pain, breathing difficulties, frontal headache, sore throat, nausea, heart palpitations, unrefreshing sleep, and even ‘orthostatic intolerance, anxiety and of course extreme fatigue ’. She cannot ‘function’, has trouble ‘processing and translating information’, including ‘knowledge of her subject’ and ‘events in the past’. She must describe her ill feelings – not being able to stand for very long, feeling sick, feeling tired and sore – as if her body is not a body at all, as if her body is a machine malfunctioning, like she is faulty, or broken. If she were a computer she would have crashed.
If ‘illness is the great confessional’, as Virginia Woolf wrote in her essay ‘On Being Ill’, why is my mother writing like this? Where are the ‘things said, truths blurted out, which the cautious respectability of health conceals’? There is the impossibility of speaking through pain, which Woolf also wrote about – ‘let a sufferer describe a pain in his head to a doctor and language at once runs dry’ – but that is not exactly true. It is as if my mother is writing against the possibilities of a literature of illness entirely.
My mother does not speak to me in the way she writes in her ‘Details of Illness’. She speaks like Woolf in June 1919, writing a letter to her sister Vanessa: ‘Did anyone ever suffer as I did? You might have seen my soul shrivelling like a – I cannot remember the image exactly, but it is something one does by rubbing a piece of sealing wax and then everything else curls up – as if in agony.’
When I am touched, I feel like those fish that twist up in the heat of your hand.
‘Fuck all this fucking paperwork,’ she says. ‘I’m wasted.’
Audre Lorde wrote The Cancer Journals so that, in her words, ‘the pain not be wasted’.
Is feeling wasted the same as feeling worthless? I do not need to ask her. I’m not her therapist. I am her daughter, her biographer, and I know how she feels. I have always been like her, and, for most of my life, she has felt ill.
With the onset of illness, there is a ‘before and after’ instead of a beginning, a middle, and an end. There is before you got sick, and then there is after – your life forever changed. My mother has a small black-and-white photograph of herself, taken when she started her BA, a copy of which would have been pinned to the notice board during her undergraduate course at the university where she would eventually teach students about archives, material culture and queer histories: her ‘before ’. On the back, she has written: ‘Taken in 1994. I am 29. Pre-ME – JUST’. She has short hair and is wearing a white wide-collared shirt and a dark coloured waistcoat. She is young: thirty-one, not twenty-nine, unless she got the year wrong. Either way, she is younger than me, except she has two young children, a girl and a boy. She is on her own, when it comes to childrearing and homemaking at least. She isn’t ill, yet.
The following year, my mother collapsed with mycoplasma pneumonia, which causes flu-like symptoms, such as fatigue, headache, chest pain and fever. I don’t remember how long she had pneumonia for – it wasn’t even the kind of illness that requires hospitalisation, which is why it’s commonly called ‘walking pneumonia’ – but she never fully recovered and was eventually diagnosed with ME/CFS two years later. Five years spent in her bedroom in the dark followed; ten years of carers in and out most days.
I remember her still lying in the dark of her bedroom in our ground-floor flat in Brighton when I got home from school, if I myself had been well enough to go. She got chest infections all the time, which she would read as a sign of something else more deeply wrong with her, but then she would not get at all sick, and explain that this was because of her ‘overactive immune system’. At night, she slept lightly, if she slept at all. Her legs and arms felt heavy all the time, like they were weighted down at her hands and feet. She would often shudder as if electrified, at even the smallest noises or movements, sometimes nothing at all. She struggled to remember things – mainly nouns. She would get this awful ringing in her ears. She had digestive problems, pains in her chest and difficulty breathing. Sometimes her throat would close up, and she’d cough and cough, as if there was something poisonous in the air.
Since that time, some years have been better than others, just like some days are better than others. My mother’s initial bouts of pain relieved, and her fatigue got worse. She got well enough to finish her degree, eventually, and then her MA and a PhD, to teach part time, but hers is not the kind of illness you ever really recover from. ‘Fatigue ’ is not the main problem anymore, not that I can ascertain what the main problem is, or where it is: her heart; her head; her sleep; her whole body. She still has muscular pain and light sensitivity, a lot of weakness, the feeling that her muscles ‘don’t have power’. More recently, she has taken to calling it the vapours.
The day my mother collapsed in 1995, I found her on the kitchen floor. ‘Alice witnessed this,’ she later wrote, as if I had observed a crime and needed a new identity. I had told my brother to stay in the living room and went to our neighbour for help. According to my mother, it was then that I become ‘insecure about leaving the house’, and ‘became angrier and her schoolwork suffered’. Was this enough of a reason to contact the already-over-subscribed mental health service? Did I just not want to leave our flat knowing that if I wasn’t there, no one would be there if she collapsed again? I also developed symptoms of illness. My mother reported to doctors that I felt ill on waking, with sore throats, tummy aches and headaches that seemed to last all day; that I said I needed to rest and wanted to sleep during breaktimes at school; that I had pain in my arms and legs after sport, dancing and ‘just the normal walking and standing of the day’; that these symptoms felt heightened when I lay down to sleep; that I had mood swings and emotional symptoms; that I was ‘full of anger’ which was often directed at her because she was ill; that I got upset because I felt ill so much of the time and could not cope with what was expected of me. I was eventually diagnosed with chronic fatigue syndrome by the doctor at the local children’s hospital, where I was being monitored for my size and weight. I remember feeling almost pleased with my diagnosis, even if I was not entirely convinced by it. It made me feel closer to my mother.
‘It was awful when you first got ill,’ my mother said to me, during that same trip to Norfolk. ‘They told me we had a shared hysterical language.’
Hysteria – wasn’t that a nineteenth century diagnosis? Did a doctor really tell her that our symptoms, our pain and fatigue, were, in fact, not symptoms of an illness at all, but a – gendered – language that only we could speak and no one else could understand?
‘They made me feel so guilty about you,’ my mother recalled, ‘and at the same time I had to prove my own illness was real. It was an awful time. They told me I was making you ill.’
My mother and I have symptoms of illness without any known cause – according them the status of feelings, confined to our bodies, or our sense of them as ill. Ill – bad, sick, wrong – is also how I learned to feel about my diagnosis. Those ill feelings were not really my own, but reflections of societal ones, which deemed people with ME/CFS as fakers, scroungers, lazy and privileged, and indeed all chronically ill and disabled people as less-than-human, deserving of fewer rights, less pay, and less security and care.
Ill feelings were always something we shared. I never went to support groups or had a friend with the same diagnosis. If I did talk about it to someone else, it didn’t feel real, or mine. It is that kind of illness: somehow ubiquitous, or at least recognizable, continually reported on, and always inexplicable. The NHS website describes the main symptom of ME/CFS as ‘feeling extremely tired and generally unwell’. It made it all sound so vague – the feeling of being ill, without a reason – no biomarker or treatment or explanation. It is often referred to now as an ‘invisible illness’, but I don’t remember that term when I was growing up.
If illness was our problem, separation appeared to be the only solution. At the suggestion of my grandmother, I even went to a boarding school – my place funded by charity – in the Sussex countryside. I had just turned eleven. Away from my mother, I was unable to pick up symptoms off her. I recovered, for a time, but I am not well now, and we are further apart than we have ever been. My grandmother was right about one thing: my mother’s illness and my own ill feelings were inexplicably intertwined.
The day after my grandfather collapsed with what would be diagnosed as leukaemia, many years after my mother’s first illness, she told me her ‘old ME symptoms’ had come back. Her mother had already died, and she had taken on the role of her father’s primary carer.
‘When I lie down in bed my heart feels heavy,’ she said to me, ‘as if it’s been straining to pump blood to my legs all day.’
She had felt the loss of her mother in her body as illness, and now, over the time caring for her father, it was as if that loss in her body had tired her heart. She still had no language for her feelings, besides the terms she has managed to steal from medicine – a form of subterfuge.
‘What is fatigue anyway,’ she continued, ‘your heart not pumping hard enough?’
My grandfather had begun lining up all the tools he could find in his house, from screwdrivers to biros, in rows on the kitchen table. Losing his own grasp on reality and time, he tried to make order out of chaos, a vast chasm or void. With my mother, this disorder was happening in her body: it felt like there was something wrong with her chest or her heart or her legs. These were disturbing sensations that couldn’t be measured, tested or diagnosed, let alone treated.
It had taken the doctors at the hospital a few days to diagnose my grandfather with leukaemia as well as dementia. Apparently, he hadn’t had a blood test for a long time. The consultant said to my mother that he’d had cancer for months, but he says it like ‘for months’ to make her feel bad for not caring for him properly, as if his health was her responsibility, as if she could diagnose disease with the power of a daughter’s duty itself. ‘He was wearing an Yves Saint Laurent belt,’ she told me on the phone, which seemed to prove something, to her at least. We could not speak for too long because using her mobile made her ear hot, to the extent that she thought her brain was being ‘zapped’.
‘Once you’re diagnosed with one thing doctors attribute every problem you have to that one disease,’ she said. ‘And we know all about that, don’t we?’ When she speaks to me, she speaks to herself, or to the both of us at once.
In 1868, Alice James’s mother called her daughter’s teenage affliction ‘a case of genuine hysteria for which no cause as yet can be discovered’. Alice’s ‘nervous turns’ were ‘not in the least degree morbid in character’; she never seemed to dread an attack and seemed ‘perfectly happy when they are over’ – the tell-tale sign of nervousness, rather than an underlying physical ailment. The lack of reason for Alice ’s symptoms was frustrating for both mother and daughter: ‘It is a most distressing form of illness, and the most difficult to reach, because so little is known about it.’ Alice spent the majority of her adult life in bed or on a sofa, propped up by cushions, known as the invalid sister to her two famous – and prolific – brothers, who often suffered with their own ailments, to the extent that as a family they shared the same body: ‘my nerves are his nerves’, she wrote of Henry, a devoted brother, ‘and my stomach his stomach’.
After Alice ’s mother contracted bronchial asthma and died in 1882, everyone had expected Alice to get ill. Daughters were known to be affected by the deaths of their parents because of their lives spent at home. Instead, her Aunt Kate reported her ‘taking up of household duties that her mother laid down’, which ‘brought new life to Alice’. Alice and her father moved from Boston into a ‘little’ three-storey cottage at Manchester-by-the-sea that summer, built in an English country style. Henry Snr got up between 5 and 6 am every morning and wrote until 1 pm, while Alice managed the house, the meals, the workmen and the visitors – ‘just as her mother had done’.
‘I feel like I’ve lost my partner,’ my mother said, after the death of her father, having returned to care for him. She sounded like Alice, who became her father’s replacement wife: ‘I used to think I loved my dear Mother & knew her burdens,’ she wrote, ‘but I find I only knew half them, & that in losing her I am only nearer to her than I ever was before; it is such a happy thought that her dear, tired body is at rest… Instead of having lost her it seems sometimes as if I had never known or loved her before.’ A singular loss is always experienced as more than itself: it is felt as total.
For Alice, becoming a wife, carer and nurse to her father was preferable to another stay at the nursing home for nervous women. It was a way to hold herself together, to stop herself breaking down, or, in her words, ‘going under’. Like Alice, we were told we were hysterical, that we were inventing a language of our own demise, that for some reason we needed to be ill to get the attention we desired. My illness could be explained by my mother’s. It was as if our personalities were sick.
In July 1890, writing in her diary, Alice recorded that she took a very small amount of morphine, the first in three years, during her last and ‘rather excessive and comic’ prostration. Taking such a slight dose of opiates, Alice was consequently able to steady her nerves and experience the pain (toothache, rheumatic gout and a very bad crick in her neck) ‘without distraction’, for there is, she thought, ‘something very exhilarating in shivering whacks of crude pain which seem to lift you out of the present and its sophistications (great Men unable to have a tooth out without gas!) and ally you to long gone generations’. The unmedicated generations Alice writes of suffered toothache ‘such as we can’t dream of ’, but also gendered illnesses lost, not recorded, unheard. When my mother and I enter the doctor’s surgery, our symptoms are still opaque and illegible, real and unreal. they are still ours alone to record, and, often, self-medicate.
To relapse is to return, to fall back, or fall off; to fall from grace.
When I started to explore my childhood diagnosis, I cycled everywhere, I went to work, I stayed out for late dinners with friends without needing to rest for days before and after. I still had days in bed and knew I couldn’t do as much as other people, like work as many days, or do much in the evenings. I knew I got muddled and confused often. I spent most weekends in bed. I got angry and I didn’t know why. I knew if I kept trying to keep up with everyone else, I would crash. But I also knew these things were not the same as being ill. Ill was not how I identified. But then: I had never known what ‘well’ felt like either. As a child I was often very tired, always had a headache and complained of my legs hurting.
When I told my mother, I was resigning from my full-time job because I could not manage the hours, and that my relationship had broken down (again), she was strangely surprised. She had thought I was well enough to work, to have a long-term relationship and a social life. I had somehow kept my ill feelings from her too. In fact, they were largely invisible even to myself. It was as if illness was lying dormant in me as a sense of unease, or mistrust in my own feelings.
As time passed – sick time, the time of relapse and re-diagnosis, naming and categorization, treatment and advice – I grew increasingly aware of how many women, and their mothers, I already knew with some form of unexplained illness. These people confided in me, as a fellow sufferer. A friend emailed to tell me she had been diagnosed with ‘burn out’ after months of suspected ME/CFS. A collaborator told me her sister, who was in her twenties, was still being cared for by her mother at home. A school friend did not realize her mother’s fibromyalgia had no known root physical cause, and another’s was coming off strong opiates for hers. Someone else told me her mother had once forgotten everyone’s names and was still living without a diagnosis for what appeared to be neurological problems with no neurological cause. My own partner’s mother revealed it was many years into her marriage before she realised not everyone had pain all the time. They had been there all along, but I had never really seen them. It was as if we had become invisible to each other.
And then I got ill: less and less able to get out of bed before the morning became the afternoon, less mobile, less able to walk very far or stand without support, concentrate long enough to read a book, or go to work for a whole day, or sit at my desk. Less able to control my mood, my anger.
And I got sick. I got sick of reading about how mothers ‘spread’ their borderline personality disorder to their children, stories of ‘fatal mothering’, and teenagers being detained in psychiatric units because of their diagnosis. I got sick of reading theories that chronic fatigue had something to do with mitochondria, or mice leukaemia, or nematode worms, or that they had nothing at all to do with any of these things after all. I got sick of hearing how half of all people with a diagnosis of ME/CFS also have Lyme disease, and that the bacterium Borrelia burgdorferi, which causes symptoms such as tiredness, pain, memory loss and confusion, is also found in seventy per cent of people who have died of Alzheimer’s. I got sick of reading about how the ill feelings and strange sensations I had always felt to be real are actually a cry for maternal affection projected onto a female lover: Vita Sackville West, who was ‘tender and affectionate to Virginia Woolf in her illness, and making herself more valuable by the threat of absence ’. I got sick of reading about some kind of as-yet-unknown ‘familial susceptibility’ in cases of ME/CFS, about the sort of influence that does not allow space for care and love. I got sick of all this fucking paperwork. I got sick of hearing about the relation between mental illness and maternal neglect or absence, which of course sometimes involves the total loss of a mother. I write through this sickness, or sicknesses, knowing all these things are true, and not true, because they are not known, they are felt.
I began writing before the existence of the novel coronavirus. With a global pandemic, and hundreds of thousands of deaths, comes something even stranger, more nebulous: life, post-viral, which does not mean sickness when it has gone away, when the original disease has been cured, and the patient recovered. Within weeks, ME/CFS advocacy groups warned of the coming uptick in cases amongst patients that had recovered from an initial Covid- 19 infection. Doctors already studying the biology of ME/CFS started research into coronavirus patients as they recovered. There were reports of people – some of whom had never been tested for coronavirus, because there were so few tests available to begin with – whose symptoms still cycled after months. They found that their family and friends, and even doctors, could not understand why they were still fatigued, suggesting that perhaps it was anxiety, or depression, or deconditioning – terms borrowed from the ME/ CFS playbook. When they tried to exercise, they found that it set them back in their recovery, if that was even the right name for it. In 2009, six years after the SARS virus infected around 8,000 people, forty per cent of patients who recovered reported a chronic fatigue problem, and twenty-seven per cent met the modified 1994 Centers for Disease Control and Prevention criteria for chronic fatigue syndrome. What if they never recovered fully?
ME/CFS and FM had not historically been studied enough. Funding had been syphoned off to other diseases in the US, and patients felt abandoned. In the UK, a group of influential psychologists, many of whom had ties to private CBT providers and insurance companies, had misreported that graded exercise and ‘cognitive behavioural therapy for erroneous illness beliefs’ were effective treatments for ME/CFS in the results of a trial costing the taxpayer £5 million. The NICE guidelines still advised these treatments because they hadn’t been reviewed for thirteen years. People with ME/CFS were hopeful that studying coronavirus would shed light on the biological processes underlying their own condition, and devastated by the lack of support after years spent in their beds, at home, with no treatments or financial support, told they could not work or study from home, told it was all in their heads, that they needed to be ill, that they had a shared hysterical language.
‘We’ll go as far as the river,’ my mother says, having quietly completed her calculation. ‘I have to see my river every day.’
Standing at the water, watching one of the dogs walk very carefully across the small rocks on the riverbed, I think about what she said to me the day before, when we were sitting in her garden: that no matter how far she walks each day, she never feels any stronger.
Later, I will read that some researchers have found markedly reduced cardiac mass and total blood volumes, causing orthostatic intolerance and cardiac arrhythmias, including tachycardia (racing heart) or palpitations, in patients with ME/CFS. One study in Japan suggested people with a diagnosis of ME/CFS had smaller hearts, and another suggested that ‘non-compliant veins’ – veins that were not moving enough blood around the body – were the problem and could explain ‘post-exertional malaise’. Maybe my mother was right, and her heart really wasn’t pumping hard enough after all.
I want to tell her, to confess, that I have been reading the documents on her desktop and in the paper folders on her dining table, which she has been writing and gathering for her application for Ill Health Retirement. I want to tell her I have been asking her about how she is feeling, and what it was like when I was much younger, when I was also ill and she was even more ill, and nobody seemed to believe us, because I want to know how she is feeling, but also because I want to tell our story. Except I don’t.
Dredging a river imposes a brake on the ability of the river to heal itself. When a low-energy river is dredged, it cannot recreate its meanders, pools and riffles; sediment is deposited across the full width of the channel creating excessive and unfocused plantgrowth. It happened with the Nar, which is a chalk, and therefore relatively rare, river system. Riparian land in these reaches is mostly semi-wild wetland, scrub or meadow. I don’t know if dredging up the past makes her less likely to recover from this relapse into illness.
That evening, as we walk back to her house through the fields, she seems stronger to me than she ever has, like she could walk for as long as it was still light. It feels like I am holding her back, willing her to turn and walk home with me.