My mother recently found some loose diary pages I wrote in my first year of boarding school, aged eleven, whilst she was clearing out her house. The pages are titled ‘M.E.’, ‘Boys’, and ‘School’. Reading them now, it’s clear I was lonely. ‘As I have said before,’ I wrote, on the page titled ‘School’, which implies that I wrote more often than I remember, ‘there is no one I can talk to here.’ My theory appears to be that no one can take me seriously ‘because I am so small’: ‘People only listen to me when they ask how big my feet are. All they can do is measure them up to me.’ I recall a time from ‘my old school’, when I was measured by the other pupils in my class to see if I was a metre tall. ‘I felt like an object,’ I wrote, ‘being used to play jokes on.’ On the page titled ‘Boys’, I seem to have anticipated being ‘left out’ in social situations, seemingly without putting myself into them in the first place, and make excuses for not doing things. ‘I am on bed rest any way most of the time’, I wrote, which is also why I am ‘so behind with my work’.
I had kept a diary for a short time when I was around nine or ten and already knew better. In it, I wrote about my frustration with my mother, along the lines of, ‘Why can’t she be like everyone else?’ She had come out as bisexual. My parents were separated. She was ill in bed all the time. I left the diary at my grandmother’s house. She found it, and read it, and then my mother read it. I’m sure my childish spite proved something to my grandmother. I’m sure my mother was furious. I had betrayed her. From then on, if I ever wanted to write something down, I wrote on loose sheets of A4 paper, as if they were just notes, or a draft, and could be easily disposed of.
The ‘M.E.’ page of my school diary details my parents splitting up – apparently, my dad ‘buggered off’, which is not exactly what happened – and my mother being ill with M.E.: ‘but it’s not catching.’ The sentences on illness – my attempt at narrating my own experience of feeling ill – come off as impersonal. It’s if I am writing in character:
‘Sleep is the only thing I’m good at. Being ill is one of my great pastimes. Having a crap life is my hobby. My bed is the best place for me, not boarding school.’
I had been diagnosed with M.E. (Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome) aged ten, a few years after my mother received the same diagnosis. It was a process of elimination, for my mother and then me. Blood tests proved there was nothing physically wrong with us, but we still felt sick. I remember feeling pleased with my diagnosis. It made me closer to my mother, who also suffered with strange sensations and fatigue, which meant she had to sleep for much of the day. I’m sure she felt it was her fault somehow, that she was responsible for my symptoms. My illness was a kind of inheritance, a form of love.
My collection of symptoms expanded and contracted over my school years, but mostly I felt tired, and not at the times I was supposed to feel tired. I got used to the ache in my head. Flinching when touched. Lying awake all night, sleeping bodies all around me. An unexplained pain in my legs, which I could not remember not having: it felt like someone slicing open the muscle encasing my shins. (My mother says I told her my legs hurt when I was still in my cot.) An ache in my arms when I raised them above my waist. Light sensitivity. Cognitive impairment. Nausea. Insomnia. My mother’s illness had more of a narrative.
In the mid-1990s, my mother collapsed with pneumonia in the kitchen, which is where things seem to happen in my family – she had given birth to my younger brother on a different kitchen floor six years earlier. I don’t remember how long she was sick with pneumonia for, it couldn’t have lasted that long, but in the months and years that followed, she suffered with strange sensations, as well as muscular pain and crippling fatigue. My mother was not sick any more – she did not have an infection – but she still felt ill. Her pain relieved, and her fatigue got worse. Today, she says fatigue is not the main problem any more, not that I can ascertain what the main problem is. I was never as good at monitoring myself, at reading my body for messages, at narrating my ill feelings. I could only approximate what I had learned from my mother, and she was struggling with the same thing.
‘All I want to do right not is go home and go to bed,’ I continued, on the ‘M.E.’ page. ‘I suppose I have gone mad, talking to paper.’
You write a diary to say something to yourself and for yourself, but it is also for posterity. If you feel ill, and the illness you are diagnosed with has no apparent cause, perhaps that unseen, future reader is yourself. Your diary makes a space to speak your feelings, however incoherent or exaggerated: where you embroider, where you gossip, where you speak without judgment, fear, or shame.
The last sentence, in parentheses, reads, ‘I know none of this makes sense, but it just helps me to let it out.’
My mother ‘found’ – I haven’t asked how or when she got hold of them – and kept these pages. She didn’t want to send them to me at first, even though she had already told me she had found them, but not because she felt embarrassed at having invaded my privacy. This reluctance was her way of protecting me. It was as if reading my writing, hearing the small voice that I had somehow briefly found in myself before throwing it away, would have upset me. She did not yet know that I wanted to hear that voice, the evidence of which was so easily discarded and forgotten. I am piecing together a diary of that time from the scraps of correspondence my mother kept. I am speaking with her, and through her, rather than for her. Much like the mind and the body, my mother and I are not separate.
My mother made excuses for not sending me the pages – ‘My phone is full, so I can’t take photos’ – before finally sending photos of the pages to me. ‘It’s all too heart-breaking darling,’ she wrote. ‘I’m so sorry’.
My mother now keeps these pages in her ‘M.E. Diary’, which details her own experiences with M.E., a condition she has lived with for 25 years, along with a letter I wrote to her from school, age eleven.
‘I drew a picture for you, so you can look at it and remember me,’ I wrote. The sketch on the other side of the page is of two winged figures, drawn in light coloured pencil – yellow and blue. I must have copied it from somewhere. I told her matron had got me a pass for hockey and swimming. ‘I have been off all day today because I have felt horrible. That’s why I had time to draw this.’
It was my grandmother who suggested I go to a charity-funded boarding school when I was 11, where I stayed until I was 18. I was away from my mother for weeks on end. We barely spoke on the phone, especially when I was a teenager. I would not say we were close; not as close as the other single mothers and daughters I knew from school. I do not remember relying on her for advice or support. And yet, somehow, I existed in the space between me and her. Somehow I always had. My grandmother once suggested I was mimicking my mother’s symptoms, that I wasn’t actually sick, but even away from her, I felt ill.
My housemistress thought I should not be encouraged. She instructed the nurses at the infirmary to send me to lessons even if I said I was feeling too ill to go. I was forced to ‘rest’ in the afternoons, in one of the rooms in the infirmary, rather than my bed in the dormitory. Rest felt like homework, a kind of lesson, or punishment. I had to be supervised in case I got it wrong; or, more accurately, was just faking it. I had to sneak in books so I had something to do, which only compounded my feelings of guilt, and fraudulence. I am sad for the child who wrote those diary pages and that letter to her mother, who was brave enough to ask for help, to make herself visible, yet clueless that the structure of care surrounding her was built on mistrust of her experience of her own body.
‘Where guilt is usually thought to be an internal experience, characterised by hearing the voice of conscience,’ writes Tiffany Watt Smith in her encyclopaedia of emotions, ‘shame is more often linked to a feeling of social condemnation and the horror of being seen.’ Shame, a consequence of my illness, and its cause, is what made me want to disappear, to become invisible (like my illness) to those other children at school, the ones who I thought didn’t take me seriously, who compared me to objects, but also those who insisted my ill feelings were not real. I went to the infirmary so I did not have to go to lessons. I went to make myself absent: to absent myself. If illness is a source of shame, expressing it is nothing to be proud of. But shame can be a valuable emotion. It is proof that you are living a disapproved life; a sick life. I felt shame when I made myself visible to others who refused to see me as anything other than a problem – as someone who did not fit in to the world of the healthy or the sick. As a child, I felt ashamed that I was not ill enough.
At school, I often felt too ill to go to classes, where the fluorescent lights made my headaches worse, and my mind could go blank at any moment. I felt defective. ‘Lessons are hard for me,’ I wrote, on the ‘M.E.’ page, ‘especially when they are easy for everyone else. I am not going to lessons tomorrow, even if it means going to the infirmary. No one is more ill than me in the hole [sic] house.’
For a long time, I thought I could not write because I was ill. I didn’t think I could do anything. At school, and then university, brain fog, mind blanks, and ‘cognitive impairment’ in general, as well as physical pain, were a continual threat to clear thinking and writing. Often unable to speak or concentrate, I didn’t feel like a functioning person, a person with a voice as well as a body.
‘Physical pain’, writes Elaine Scarry in The Body in Pain, is ‘language destroying’. Pain destroys the subject and its world, which is why it is inflicted in torture – interrogation replicates this deconstruction of language to the ‘pre-language of cries and groans’. Real pain is a way of asserting fictional power over another person, because, ‘as the self disintegrates, so that which would express and project itself is robbed of its source and its subject’. I associated pain and fatigue with the loss of myself, of my personhood, because, for a long time, illness, for me, meant failure. A failure to process information, to speak clearly, to concentrate long enough to read, and write.
In her essay ‘On Being Ill’, Virginia Woolf describes how writing the experience of ‘common illness’ contains a political power. We live through our bodies: ‘Literature does its best to maintain that its concern is with the mind; that the body is a sheet of plain glass through which the soul looks straight and clear.’ ‘On the contrary,’ Woolf reminds us, ‘the very opposite is true’. Illness is something we all experience but don’t often read. Woolf calls for a literature of the ‘daily drama of the body’; we need a ‘new language’ for pain, she writes from her sick bed, one that is ‘primitive, subtle, sensual, obscene’.
We read Woolf’s essay in a seminar, while I was doing my MA. At the time, my mid-twenties, I could not identify with Woolf, who could write from convalescence. ‘That never happened to me,’ I said to my seminar group, thinking of my childhood, my experience with illness, my mother in bed in the dark at home. I had never associated illness with productivity. ‘I was ill when I was younger,’ I continued, as if this offered enough validation for my comment.
At the time, I could sit through a seminar or a lecture without struggling to keep myself upright, overcome with a headache, which could easily spread down my arms and legs, a sensation I had often experienced at school and the first time I went to university. I could keep up, for the most part, I thought, because I had told myself there was nothing wrong with me – and it had worked. I appeared to be well. Maybe I was just feeling better.
I never said its name. Had I been ill with the flu, or something far more serious? To name it would be to make it real, rather than deny it. To name it would have felt shameful, because I had been conditioned to think it was not real at all. Ill feelings can be silencing, but they are also an effect of silencing.
I do not remember anyone responding to my comment about illness and unproductivity in that seminar. It was too much to ask others to identify with these vague and unqualified statements about an unexplainable childhood illness. Now I realise that to assert that ‘you can write when ill’ was never Woolf’s intention anyway. Where I once read negativity – Unlike Woolf, I cannot write when ill – I now read positivity. She meant that writing one’s own experience, however incoherent, however personal and specific, is a way of writing, and speaking, through ill feelings, however strange.
In her diaries, Woolf described the physical manifestations of her emotional pain during periods of mental illness. These passages are clear, and plainly written. They do not sound like cries or groans. She is matter of fact. ‘This melancholy’, she wrote in 1929, ‘it comes with headache, of course.’ High temperatures and a ‘jumping pulse’ were diagnosed by doctors as the symptoms of influenza, pneumonia and a heart murmur, but for Woolf, at least, her state of mind and her pulse seem to be one and the same: ‘My eccentric pulse had passed the limits of reason,’ she wrote in 1922, ‘and was insane.’ These physical symptoms are intertwined with her emotional, and mental, symptoms. None is more important or more valid than another. Recurrent fever, flulike aches: the physical symptoms of illness seem to be brought on in times of stress, of expectations, and of deadlines. ‘I get the jumping pulse and pain if I do anything… It’s so easy with this damned disease, to start a succession of little illnesses, and finally be sent to bed for six weeks.’ The disease is damned and so is she, damned to her bed, like a child being punished.
Woolf also wrote of losing language during periods of illness. ‘I know the feeling now, when I can’t spin a sentence, & sit mumbling & turning; & nothing flits by my brain which is as a blank window. So I… go to bed…’. Her loss of language is a symptom of illness, but also a signal. She writes in her journal that her sister Vanessa and her nephew Quentin don’t want her, and her senses respond, or perhaps this abandonment is a consequence of her ill feelings: ‘Very useless. No atmosphere round me. No words. Very apprehensive. As if something cold & horrible – a roar of laughter at my expense were about to happen.’ It’s as if she has lost the ability to ward off illness. A witch without her power. An anxious and empty feeling surrounds her, ‘with a vacuum’. Her mental state shows itself: ‘I looked at my eyes in the glass once & saw them positively terrified.’ She saw eyes; they were terrified – it’s as if these eyes do not belong to her at all, as if she doesn’t see through them. Her senses are active. There is the sight of her eyes, the sound of laughter, the sound of her own silence, touch – a drumming slightly in the veins, a feeling like a wave coming over her – and, sometimes, she even tastes a ‘queer bitterness’ at the back of her throat.
Woolf describes the complex relationship between body and mind, without confusing the two. Her body is the site where anguish shows itself: ‘Such “sensations” spread over my spine and head directly’; horror is ‘this wave spreading out over me’; ‘such an exaggerated tiredness,’ she writes – ‘Never was anyone so tossed up & down by the body as I am’.
As Woolf proved, it is possible to fashion a language to live through the daily machinations of ill feelings, the experience of illness, to write yourself a subject, and a world. Bed isn’t just the place you are confined to when you’re ill, when you feel those sensations spread over your body, struck down with a series of little illnesses. Illness allows you time away from ‘the army of the upright’ and the ‘ideologies of the healthy’. Sick time is time to resist.
‘I’m sinking down, and down,’ my mother told me in late 2015, a few weeks after her mother died. She had spent the last weeks in Norfolk looking after my grandfather, but this weekend she was at home, and I went to stay with her. We were lying in two separate beds against opposite walls in her bedroom, facing each other, a dog curled up with each of us. She had bought the second bed, in a Victorian wrought iron style to match her own, but new and therefore comfortable: it is the bed I sleep on when I go to visit her. ‘It’s as if I won’t be able to get up.’
It sounded like she was quoting Woolf, or Emily Dickinson’s poem ‘I Felt a Funeral in my Brain’:
And then a Plank in Reason, broke,
And I dropped down, and down –
And hit a World, at every plunge,
And Finished knowing – then –
‘And my ears, obviously,’ my mother continued.
‘Your ears?’ I asked, feigning confusion so she would explain what she meant. My mother knows this feeling well.
‘You know,’ she says, ‘that white noise surging through your ears.’
‘Yes,’ I say. ‘I know exactly what you mean.’
I know what she means because I have felt that same sensation myself. I have felt that plank break too.
This kind of language is incomprehensible to doctors. But it is her language for ill feelings. She is not really sinking down and down, but she is.
This is how she feels, both physically and emotionally, because they are very much related. The feeling of sinking down and down, or white noise surging in your ears, are what most people would probably just call feelings. To my mother, they are symptoms of illness. They sound a lot like metaphors. In her 1978 book Illness as Metaphor, Susan Sontag warned against using metaphors for illness, because it fosters feelings of shame in the sufferer, and a culture of victim blaming. Physical symptoms reflect the sufferer’s character, so much so that the character is thought to cause disease, or inhibit its cure. Sontag cites, among others, Katherine Mansfield, who, dying of an advanced lung disease, wrote in her journal: ‘The weakness was not only physical. I must heal my Self before I will be well.’
Myths of TB, and more recently cancer, suggest you are responsible for your own disease. The tubercular is pale and thin because she is full of passion. TB, writes Sontag, made a person ‘sad’ and ‘interesting’. Cancer metaphors, on the other hand, imply the repression of emotion. Medical research even seems to solidify the mythical relationship between character and illness: ‘Supporting the theory about the emotional causes of cancer, there is a growing literature and body of research, and scarcely a week passes without a new article announcing to some general public or other the scientific link between cancer and painful feelings.’ Psychologising, ‘a particular modern predilection’, Sontag argues, seems to provide the sufferer with a form of control over experiences of grave illness: ‘Psychological understanding undermines the “reality” of a disease.’
Myths and metaphors proliferate around M.E., as they do around any illness. How do you approach a physically unexplained illness without the use of metaphor, when there is limited language you can use to describe your experience of being sick? It seems to me that unexplained illness behaves metaphorically: symptoms are felt by and through the body, which are not literally applicable. Medical research suggests your ill feelings are caused by your cells malfunctioning, or an overactive nervous system, or your body going into hibernation.
‘What is fatigue, anyway?’ my mother asked me, a few months later. My grandfather was sick, with what turned out to be leukaemia, but we didn’t know that yet. ‘Your heart not being able to pump blood hard enough?’
When she lay down in bed at the end of the day her heart felt heavy, like it had been straining all day. Her legs were hurting too, and she thought they must be related. ‘I don’t know,’ I said. ‘I don’t think so, Mum.’
‘Well, I wish someone would do something about it,’ she said.
My mother had lost her mother, and was in the process of losing her father. She had been signed off work, incapacitated, again. Her loss felt physical. She felt all these losses in her body, as illness. She still had no language for her feelings, besides the terms she had managed to steal from medicine – a form of subterfuge.
‘Maybe that feeling in your chest is anxiety,’ I said to her. I didn’t have an answer for her, couldn’t explain why she was feeling so ill. ‘Maybe there’s nothing physically wrong with your heart, and it’s your real one that’s hurting.’
You fight cancer, but you do not fight unexplained illness. You fight for it. You fight for diagnosis. You fight the people who say you are not sick, that your illness isn’t real, or it’s all in your head, that your symptoms can be relieved by cognitive behavioural therapy, or gradual exercise. Medically unexplained illnesses such as M.E. don’t get to be emotional, ‘less real’, and therefore ‘more interesting’. They are denied the category of both illness and metaphor. No wonder most people with M.E. long for a medically valid explanation for why they feel sick. A disease cannot be mental, ‘less real’, less out of your control, until it is considered real to begin with.
What is fatigue anyway? – I often think back to the question my mother asked that day. I still don’t know what it is. I cannot explain it. But I know what fatigue feels like. I know its effects. Fatigue is being worn out, but it is not a consequence of exertion. Fatigue is not a lack of energy, it is its total absence. Fatigue is not exhaustion. Fatigue is exhausting. Exhaustion belongs to the healthy, to the productive, it is the result of doing. Fatigue is the negation of productivity. It is a force on your body. It is dragging down. It is the feeling of being down because productivity is being ‘up’. Fatigue is not doing what you want to be doing, and then it is not remembering what that was to begin with. It is the opposite of enjoyment, of joy, meaning fatigue is a category of feeling. Fatigue stops you working, and it is work. It is laborious, and laboured. Fatigue is punishing and a kind of punishment. It is not worth googling. Fatigue is an effect – exhaustion – without a cause, and without a solution. It is made worse by further exertion, and, sometimes, it is relieved by the same means. It is mystifying, and, in some cases, deadly. Fatigue is a form of resistance.
I still have all the notes I made at university, studying for a BA in History of Art. Not from lectures or seminars, just the notes I made when I was revising for my exams on Post-War American Art, pages of text typed and hand-written in all caps, slipped into plastic folders with cut-out photocopies of artworks and images I hoped to reference: Louise Bourgeois’s 1947 folio of prints titled He Disappeared into Complete Silence; her ‘Personages’, needle-like sculptures carved from wood, expressions of a mother’s ambivalence towards her family (cutting and caring); a photograph of the artist with her three sons. My notes about the sculptures read like code, or secret formulas, which almost make sense to me now. I imagine they almost made sense to me then: appendages/packages/organs – physical economy implies psychic economy / projection + introjection of objects in formation of subjectivity… So much of the work involved silencing, a loss of voice. In He Disappeared, a man tells a story so fast no one could hear it. Another man has his head chopped off by the ceiling. A woman dies without anyone knowing it.
Around this time, I was often what my mother would call ill, meaning that I could not concentrate, that I was sometimes confined to my bed for a few hours in the afternoon, sometimes whole days. I remember times when I was groggy for weeks.
I noted down what Mignon Nixon had written about Bourgeois’s engagement with hysteria in the 1940s. It existed somewhere between the Surrealist appropriation of hysteric femininity as a model of creativity and forbidden desire, and feminist discourse of the 1970s, which celebrated the hysteric as a historical symbol of feminism, a sign of protest against patriarchy. To reclaim the figure of the hysteric, like the madwoman or the witch, is to reclaim the right of women to power, to reclassify centuries of marginal women as victims of patriarchy, rather than of their own internal drives. I felt like I understood Bourgeois, but not the Bourgeois who made a model of her father out of bread and then destroyed it at his table – my father was always part of a separate reality. Reclaiming the hysteric did not have much to do with the realities of living with unexplained or invisible illness, that I could see. I was more interested in Bourgeois’s fixation on the figure of her mother, often figured as a spider, the Bourgeois who pushed her sculpture of that mother – small and hard – onto the floor, and let it smash to pieces. I liked the Bourgeois who was small and hard, like me. The Bourgeois who was also a mother, an artist, an insomniac, a girl, a writer.
I recognised in Bourgeois a sensitivity to her body. Her psychoanalytic writings show that she had her own language for her pain, and means to interpret it: her unconscious. Pre-menstrual tension manifests itself as pain in her abdomen, hardly noticeable, ‘like a vertigo at the hollow of the stomach’, which is followed by immediate diarrhoea, ‘related to unconscious material or rather showing awareness / of repressed wishes’. This hollow sensation makes her feel like there’s something wrong with her, that it is her fault. Post-menstrual tension, on the other hand, is ‘revengeful + aggressive’, a kind of physical evidence that ‘There is something wrong with me but it is / “your fault” you did it.’ This aggressive pain seems to ‘replace anger – in everyday situations’, which she interprets as ‘self reproach at not measuring up’. In her writings, what you could call her journal, Bourgeois was her own psychoanalyst. The mother figure is held responsible for the daughter’s failure at self-love: ‘Love your neighbour as yourself – It is difficult to achieve this ideal when you always feel that / something is wrong with you’. I always felt something was wrong with me too.
In the weeks before I finished my degree, I spoke to my mother far more frequently than I had as a child. We shared our experiences on the phone, sometimes daily – I was in London, she wasn’t, then as now – but mostly she shared hers. She was suicidal, and alone. A relationship had broken down. She told me she wanted to die. For the first time, I felt that as a reality – she might die, on purpose. How could I tell her what I did not know then? That she feels there is something wrong with her. That I feel the same. Defective. I don’t know how to tell her this now, or how it will help. I think I have tried but she’s changed the subject. She is fixated on finding a cause for her ill feelings. She doesn’t want to live with them, and who can blame her.
Illness is something I was possessed by for a long time. Illness is something that my mother is possessed by still. It occupies her mind and her body, like a hobby, a job, or a subject you study. It didn’t seem to matter where I was, we were joined together through feeling. Illness can fill you up, until your sense of self is defined by it. It makes you feel like a fake and a fraud. It shames you into difference. If chronic fatigue and pain are much like shame, they also affect how you perceive yourself, as a person with a body. Ill feelings make you both impressionable and hard. To stop yourself feeling suddenly diffuse, as if you are disintegrating, you make yourself small and solid – impenetrable. You appear self-contained because you spend most of your energy trying to hold all the parts of yourself together. Illness made me guarded, quiet, small, contained, like Bourgeois, who wrote, ‘And what’s the use of talking, if you already know that others don’t feel what you feel?’
My hands seized up a few days before I was due to sit my final exams. I couldn’t think. Couldn’t remember anything – names and phrases and ideas and images mixed up together. I could not hold a pen. I realised I had not really understood much of what I was now supposed to know, and interpret, and then write down, clearly. How was I going to write an exam paper on the part-object in Louise Bourgeois’s work? I realised I had never understood what that was, let alone been able to recall the intricacies of psychoanalytic ideas. I asked for help, on my mother’s instruction, something I had not done since I was a child, when I learnt to distrust anyone with authority, medical or otherwise. They gave me a laptop to write on, and a room of my own. It felt like cheating. When it comes to illness, it seems there is no way out of shame.
‘Hysteria,’ Asti Hustvedt writes in Medical Muses, ‘the bizarre rupture between symptom and source, played out on the female body, has resurfaced in our postFreudian era in new but oddly familiar forms.’ This ‘bizarre rupture’, which appeared in the later part of the twentieth century as various forms of unexplained illness, played out on my body. To play out, I remind myself, is also to exhaust, destroy.
Sometimes, illness is not what is seems. Ill feelings speak in and through the body, rendering it speechless, silent, or speaking in tongues. It insists there is white noise surging through its ears, that it is falling down when it is clearly not. Verbal language doesn’t adequately describe the pain of the body, and its strangeness. Ill feelings are feelings that cannot be spoken, and therefore manifest themselves as sensation, and sometimes that sensation is pain, which is so easily read as a symptom of illness, something diagnosable, something concrete, and nameable. When you know your body too well, it can become strange. You find your own language for your ill feelings, and a space to write them: your diary.
In the play Alice in Bed, Sontag’s fictionalisation of the inner life of Alice James, Alice attends a version of the Mad Hatter’s tea party in Alice in Wonderland from her sick bed. She is joined by Dickinson, who wrote, ‘Men do not sham convulsion,/ Nor simulate a throe’, and the feminist journalist Margaret Fuller, another middle-class woman of letters, as well as Kundry from Wagner’s Parsifal and Myrtha from Giselle. Alice’s visitors were all ‘angry women’, as Sontag called them, ‘ghosts’ from the nineteenth century.
Alice James was bedridden with a nervous illness for much of her life, but she too wrote a diary. ‘Ever since I have been ill,’ she wrote, ‘I have longed and longed for some palpable disease, no matter how conventionally dreadful a label it might have’. Like Alice, my mother and I are denied the validity of our feelings of illness by ‘the medical man’, who, in her words, has ‘no higher inspiration’ than to assure her she is ‘personally responsible’ for her symptoms, washing his hands of her ‘with a graceful complacency’. James and my mother were born a hundred years apart, but they seem to have experienced similar feelings – ‘always driven back to stagger alone under the monstrous mass of subjective sensations’ – and similar reactions to their own interpretation of these feelings from doctors, who, finding nothing medically ‘wrong’ with her body, demands that she take responsibility for herself. Sometimes it feels like nothing has changed.
Alice only started writing her diary at 40, a year before she was diagnosed with the palpable illness she longed for: breast cancer – Sontag’s disease, her mother’s ‘great bequest’, as she wrote in her own journal in 1964. During her lifetime, Alice suffered bouts of unexplained illness, diagnosed as ‘rheumatic gout’, due to her stomach complaints, ‘nervous hyperaesthesia’ or ‘spinal neurosis’. Attacks of ‘neuralgia’ when she was fifteen. Bedbound in England in her 30s, doctors could not find an organic cause of her illness. They treated her as a ‘neurasthenic’ patient: another name for a sufferer of unexplained illness. When your illness is inexplicable, when there is no ‘organic’ or known source of your symptoms, there is also no way out of your body, or your bed.
In Ivo van Hove’s 2000 staging of Alice in Bed, Alice, played by Joan MacIntosh, is trapped in a transparent cast of her own body. The cast is a visualisation of her sick bed: a metaphor for her ‘invisible’ illness, but also her mind, which has trapped her body inside itself. Yet Alice speaks, quoting her own diaries in conversation with her brother.
‘With my mind I can see,’ says Alice, ‘I can hold all that in my mind.’ I can be like Alice, reading and writing from my bed, which is also just my body, casing and costume, inspired by the sick women who came before me, who wrote through their ill feelings, rather than despite them.