Abi Palmer and Alice Hattrick exchanged emails over the course of this summer. They discussed the practice of writing about illness, explored the idea of crip time and critiqued the value of medical labels.
Abi Palmer is a writer, artist and filmmaker, and her debut book Sanatorium, came out last year. Alice Hattrick is a writer and critic, and their first book Ill Feelings is published this month. You can read an excerpt here.
I have been thinking a lot about descriptors and collections of terms and labels – I am at the point in Ill Feelings where your mother describes her body as being like an egg moving through an egg slicer. I wondered if you saw yourself as a collector as well as an archival researcher? You seem to allude to doing it consciously – saving up and writing down the ill feelings described by your mother. I keep thinking about my own little collections – metaphors offered by physiotherapists about what it feels like to squeeze my pelvis (my favourite is: ‘you’re a house, close the downstairs windows’). Did you begin collecting first, or had you already begun writing?
I wrote a paper during my brief and unfinished university experience on the marketing decision made by The Royal Society to ‘separate the knowledge of Nature, from the colours of Rhetorick, the devices of Fancy, or the delightful deceit of Fables’, according to Thomas Sprat. It felt like they were trying to say that by stripping language of its beauty, it could be made less objective, more reliable. Of course, that’s a total sham designed by old white men (who, I have noticed, often hate to be categorised in this manner). But I have a sense that many people really believe in the role of science and medicine to categorise and sort, as if bringing us closer to a kind of integral truth. Your book highlighted for me that there are so many ways to sort and categorise. I am glad you reminded me that not all of them are helpful.
Re: collecting vs writing, I think they happened simultaneously, because for me the process of writing begins with collecting, with writing down what happens, what people say to me, what I’m thinking about, or something I remember, or something I’m reading or looking at. It’s not strictly a journal because I never date anything I write in my Notes app or on scraps of paper or in emails to myself, and it’s in no way habitual – it’s too chaotic. Alice James, the nineteenth-century diarist and sister of Henry and William James, explains why she started writing her diary in her forties, having spent most of her life pretty sick: ‘I think that if I get into the habit of writing a bit about what happens, or rather doesn’t happen, I may lose a little of the sense of isolation and desolation which abides with me.’ And this is partly why I started writing things down and collecting them. For me, it’s important that this isn’t methodical – that some things will go missing or not be said. The next stage is about making connections and narratives out of that collected material.
My mother is a collector and has been since she was a teenager. When my brother and I were growing up, she went to university to study material culture and design history, so thinking about collecting and collections, thinking about archives and their gaps, I inherited from her, much like you could say I inherited this tendency towards ill feelings, and I explore that in the process of collecting anecdotes and documents. I love things like the egg slicer metaphor, because it’s so of its time too; it really screams 1970s, when my mother would have been a child, but she’s comparing herself to the egg being put through the slicer in her fifties. It’s such a kitsch and yet violent object – like so many that belong in the kitchen – but also one that is satisfying and neat.
I think I was already writing about my childhood experiences with doctors, so what I had really been collecting was my own memory, and the narratives we have around illness when it can’t be explained. I have always written about my mother in some way because our relationship I find endlessly fascinating and difficult and wonderful, but then my mother relapsed really quite badly, and her language around illness transformed into something almost overwhelming and compulsive, and it was all narrativised to make some kind of sense of what was happening. And she doesn’t have a partner, so I was the person she talked to about everything. I had to write it down.
I was collecting what my mother was saying to me but I was also collecting these other lives and what historically had been said about their ill feelings. I was also writing down my own ill feelings for medical reasons so I could keep track of my own symptoms, which led to a new diagnosis of fibromyalgia. Conversely, all this noting down and collecting was what I was always asked to do as a child diagnosed with chronic fatigue syndrome. I would say I could never remember, but really, I never had the inclination. I didn’t really want to write it down for someone else. I literally refused to keep a symptom diary, so there was always this sense that I didn’t trust my own illness experience either. I didn’t want to leave any evidence. I didn’t want anyone else’s opinion on what I was feeling. It was only as an adult recalling those memories that I could clearly see it reflected all the distrust I had experienced from adults, apart from my mother. She actually found some teenage diaries from when I’m a bit older, where I wrote a lot about my symptoms and how I was feeling (basically ‘really shit today’) but they probably would have been useless to a doctor or anyone I saw in alternative therapy. There is also a lot of teenage shame bound up in writing a diary – it always needs to be justified, or apologised for. Reading them back, I was mainly surprised how I seemed to have my shit together more than any of the adults in my life.
I definitely felt an affinity with a lot of the characters in Ill Feelings – mainly their attitudes towards doctors and their cures, to which there was no alternative, and their resistance to a lot of the therapies that were torturous, that restricted their freedoms and often read more like punishment. But because of the time period I was looking at – Victorian and early twentieth-century ideas around nervous illness – those accounts are from women who had money to afford these therapies. It interested me that the way my mother and I were treated was as descendants of people like Alice James and Virginia Woolf – nervous women – but at the same time we had no money and were on benefits. It’s not like we had the opportunity to try different treatments, unless they were basically free. Growing up with ME/CFS made me weirdly sceptical of anyone offering treatments that cost money. I mean there literally are no treatments for something you can’t even prove exists, so that’s where I was starting from: what happens to the medical narrative when your diagnosis is just this name for something no one appears to understand? What happens to it when that name doesn’t lead to treatment or cure, let alone recovery? What if you just have this name for your whole life – like, what are you supposed to do with it?
It’s late at night and I haven’t slept much this week in the big heat. I have been writing and rewriting sentences at you for days, which is a very annoying habit (but not out of character).
Have I told you that most of my family have been named with the same medical label as I have? It appears to run down multiple bloodlines but there are no tests to prove or deny this. One of the questions on my first assessment was: ‘as a child did you ever amuse your friends by pulling “India rubber” faces?’ (Perhaps I can be officially diagnosed as a clown). In many cases, family members have met partners and married and had kids, and then at some point they and their partners and children have all been named with the same rubbery painful syndrome. A lot of relatives had never even met and they’d all been named through totally different routes.
That label isn’t the only thing we share, of course. It’s funny to see my bloodline at weddings – row on row of plump matriarchs with stern faces and skinny silent husbands. Everyone is clutching their mobility aid and wearing sensible shoes, with stout little legs that don’t quite reach the floor. I’ve watched generations of family trying to divert from this path but it comes for all of us in the end.
My mum and I have a complicated relationship because of the different ways we navigate our own ill feelings. She was my first reader of Sanatorium and her biggest fear for me was that people would read it and think I wasn’t really sick, only mad. I said, ‘I am mad.’
Some of the hardest pages to write were the ones where I felt I had to explain my body using medical diagnoses. I almost deleted them entirely – I get asked so often to write for abled people, explaining what my condition is and how it affects me in concrete and tangible ways. Just one time I wanted to leave it unspoken. I think if I’d have written it after reading Ill Feelings I might have tried to sit with that inclination a little further.
My mum once described her own constant quest for further medical labels as like peeling back an onion to reveal further layers of truth. Eventually, she said, they’ll get to the bottom of it – a final and absolute answer / the cure. I think it’s like peeling back the layers of an onion only to get to further layers, a different onion. Your hands are full of onion. There are so many onions you have lost track of what you’re peeling. Everyone misses dinner.
None of my family have been cured yet, as far as I’m aware.
Here are some questions for you:
Did the idea of crip time impact the way you approached writing your book?
Do you sometimes get furious at having to have conversations like this instead of talking about, I don’t know, lipstick? Are there other things you’d like to talk about?
I think that’s really interesting, what your mum said about fearing you would be considered mad, not sick. Often mothers are talking about themselves when they speak about their daughters. They are expressing their own fears, for us and themselves. Something I thought Sanatorium evoked really well was the sense that you can’t treat the body without the mind imposing on it – or even that thinking about the body, and other people attending to it so intensely, can make you feel detached from the reality of living with a body-mind. They get split apart, and everything becomes unreal – if that can be considered a version of madness.
My mother has actually only just finished Ill Feelings. She said it was like reading a letter to her, which is, on reflection, how I think about it too. The whole time I was working out how to write it and collecting things she had said, and then writing the book, I was also helping her find other ways of thinking about her diagnosis. I am still trying to find ways she can work on crip time, how it doesn’t all have to be a loss, that if we are to have futures we might have to start thinking about them as being sick rather than relying on the notion of a potential cure.
Cure is a very seductive narrative – which Eli Clare is excellent on in Brilliant Imperfection – but it’s something you can’t help being seduced into when all you have are stories and metaphors, when there is no proof or evidence, when the name for your illness is kind of meaningless. I guess that’s why I find those bloodlines and generational influences so interesting – because they are also narratively seductive, based on hearsay and mythologising as well as observation. But they can be our stories to tell, and we can tell them in the way that feels right to us. I think something I have found is that our mothers have had a different experience of our ill feelings too – that they had to fight and argue for care, for tests, to be taken seriously – and when a mother is both sick herself and also responsible for advocating for us, it’s completely unmanageable.
Crip time definitely influenced the book and becoming familiar with the term and the ideas around it also helped me adapt my life in order to be able to write it. I had spent so many years trying to bend to clock time, and became almost able to do that, but it wasn’t a happy time. It seems ridiculous now but I had to get ill enough to change my working situation, which then made me more able to focus on the book, to dedicate my time and energy to my practice, to let it take up more space rather than using all of my energy trying to do everything. So the opportunities that crip time allows, like pacing, was something that I had to learn. I have to allow myself to work at weird times and eat at weird times – and stop thinking about them as weird just because it’s not what you’re supposed to do on a 9–5 schedule, or that I will come across as flakey or useless or lazy – just because I’m resting. There is also resting in order to be productive, which I also want to resist, but it’s difficult because even if I’m working and living on crip time, I still have to be aware of clock time, and it’s easy to feel like I’m always in its shadow.
Re: conversations like this. I don’t think I’m sick (lol) of it yet, maybe because I never used to talk about it. I even used to get annoyed at my mother when she would talk about her feelings, and I have always had quite an aversion to people talking about feelings of any kind. It isn’t tiresome to me, it’s still kind of new.
I thought of you and your mother a lot this weekend. For the past year or so I’ve been slowly attempting to Marie Kondo my apartment, shedding all the layers of the things which do not spark joy. I finally arrived at the paperwork section. There are decades of medical records about me, violently intrusive surgeries, times when I’ve asked for help and not received it. There’s a record of a visit to a genetic testing lab where they measured the length of my arms, the whites of my eyeballs, took photographs of me with my fist in my mouth, my legs around my head, before removing a piece of flesh from my upper arm, about the size of a pencil eraser, with a device that looked like a spud gun; followed by years of follow-up letters saying, Hi, your tissue sample still shows us nothing. There are fifteen years of social care reports, charting my capacity and wellness in terms of how well I’m able to wash, dress and eat. The reports chart the move from New Labour into austerity – increasing cuts in care hours and budgets – the abolishing of the Independent Living Fund (a different budget from Social Care, which used to allow me assistance with ‘having a life’ outside of being a medical body, like being driven to work or social events). The last cut was particularly brutal. They attempted to halt my care altogether because I was having dental surgery for a day.
I shredded almost all of it. I don’t want this to be the archive of my body. The weight of these folders hung heavy in my home, on my bookshelves. It became so unwieldy that I needed additional care hours just to take the folders down and add to them. I’ve kept only what I might need to continue to ‘prove’ my cluster of diagnoses to the state when needed. I resent every page. The rest has been fed into the shredder in little bursts, until the shredder overheats and refuses to cooperate without a long rest. We are beginning to relate to each other, the shredder and I.
During the first stage of Marie Kondo-ing, I decided to throw away my care package altogether. I realised how much I hated being dependent on a stranger in my home, having to be a boss, to have social workers come into my living space, to look around and judge how much I’m coping, or not coping, by how many stacks of used chemotherapy needles were piled up around my bed. It’s not that my body has changed, or my needs, it’s that I’ve changed how I want to live in it. Next week social services want to visit to check my well-being and whether I really want to make this severance. How do you say, the thing you are forcing me to do is exactly the thing I’m trying to escape?
I am basically furious, but this feeling is very new. I have been a very compliant patient. I think my mother would be horrified with some of my choices. We haven’t spoken in a year.
I didn’t know about crip time when I started writing Sanatorium. A few years ago I wrote a manifesto called No Body to Write With: Intrusion as a Manifesto for D/deaf and Disabled Poets, which argues that it’s really easy to pretend away the intrusions in our day to day life, which bring us out of our creative reverie – such as constant hospital appointments at unhelpful hours, altering our pathways to find a kerb cut on the pavement or the most accessible (and inconvenient) route through a building. To have a sustainable and true-to-body practice, I argued, we should identify and acknowledge and centre these intrusions. Sanatorium became a fragmented and ripped-apart thing because every time I had to stop writing or talking, there is a gap. The voice keeps switching tones because the body and the mind keep intruding on each other.
I don’t know if I’d have needed this manifesto if I’d known about crip time, although they feel like slightly different things. I really enjoy your descriptions of clock time vs crip time; I think that’s what I’m currently relearning in attempting to escape the care system. So much of care is about being encouraged to conform to another person’s clock.
I am more and more aware of how, as a sick person, the story you tell about yourself and your body can be utterly transformed by an encounter with a doctor who chooses to name you as something and send you on a treatment path (or lack of path). At the same time, if you were in a different department with exactly the same symptoms, or had a different gender, or it was a different time of day, you might end up in a completely alternative timeline. Medicine is an unreliable narrator because when it names you it wants you to not question that. It says, I’m trying to help you, but it doesn’t say how.
Mum always had quite a complicated relationship to carers who came to our flat. Having someone there every day was obviously necessary in lots of ways because my brother and I were really young and she was a single parent, but she had to weigh up how much energy it would take to talk to them – as they always talked to her the whole time – against the benefit of having someone do the housework.
I don’t think I knew about crip time when I started working on Ill Feelings, but learning about it certainly helped me finish it, or keep going at least. I knew I wanted all the pieces and fragments that I wrote towards Ill Feelings to be woven together. All those fragments and ripped-apart things had to be sewn back together, and a lot of the labour of writing was actually that weaving, or stitching together, making it something seamless. I’ve started making patchwork with old fabrics that I’m dying with plants, and I think you could describe it like that too: reusing and recycling, augmenting, mending and re-working. I don’t think it’s so different from keeping the writing in fragments – there is always a choice, always an element of artifice, and those choices determine how the reader experiences time. Sanatorium definitely evokes that feeling in the reader – of interruption and disturbance, of not having enough time – and invites them to feel frustrated and angry alongside you. Writing Ill Feelings was a process of filling in the gaps – saying what had not or could not be said before – so it had to flow, and be continuous, even if it was initially written in fragments on crip time. Throughout the whole process, I felt like such a fraud because the whole time I was thinking that if I was able to write it then I wasn’t the one to author this experience in the first place, which also sounds ridiculous written down. The way I came to understand crip time in relation to writing Ill Feelings was also just: in order to make this book the way I want it, with my resources, it’s going to take absolutely ages (in clock time) and that’s okay.
It seems obvious but I’m not sure how accepted it is that how you’re gendered, along with your racial and class identity, impacts the narrative of diagnosis and treatment. I guess it’s also hard to measure. I went to Bradford the other day for an event at the literary festival that was called ‘Sick Women’ and I was really struggling with the title because of the way I have increasingly come to disavow myself from having to be a woman all the time, or even any of the time. When I got there, I realised I no longer presented in a straight-forward way (as a woman) because I’ve cut my hair short and I prefer gender-neutral pronouns, which everyone on the panel knew because Fitzcarraldo has an amazing publicist. Until I got there I didn’t think I would ever be able to present in the way I identify. I just always thought it would be queried, mirroring my illness experience. Someone in the audience said that when they are gendered as female by doctors their complaints will always be challenged, but when they are gendered as male their accounts of illness are never queried, and even hearing that felt so validating. Suddenly, it was not just a theory I had in my head. My glimpse of public life ended up being affirming. Having that platform to speak on gendered illness was actually really helpful, even if the journey there and back was way too much. It made the fallout worth it. There are illnesses and diseases associated with biological sex, but then there is gendered illness – illness that is associated with ‘female’ or ‘male’ traits, and all the ideas about womanhood as weak and untrustworthy and emotional. I’ve only realised recently that I actually had a lot of gender dysphoria around the understanding of my ill feelings, because I didn’t really feel like a woman – and didn’t experience my pain as ‘female pain’ – until I was in that medical space.
My mum recently found her hair in a teapot from when she came out and cut it off. She wasn’t ill yet. I haven’t asked her, but I wonder how much her sense of her gender identity was impacted by becoming ill and being treated as a hysterical and emotional woman (and mother) by doctors. I guess this is why it’s not annoying having conversations like this – there is still so much to talk about that I haven’t even started exploring.
Photograph of Abi Palmer © Faith Aylward and Mia Maxwell