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An Interview with Jenn Ashworth

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Jenn Ashworth, a novelist, short story writer and Professor of Writing at Lancaster University, was unexpectedly diagnosed with a brain tumour just before Christmas 2022, after minor symptoms prompted an investigation. Although the tumour was benign, it had to be surgically removed. In the following months Jenn underwent drug treatment and a 13 hour surgery. Due to complications she also had to spend some time on a lumbar drain. While the surgery was successful she has been left with significant hearing loss. 

 

Jenn first contacted me at the inception of the Dx: Diagnosis and Writing project, around the time of her diagnosis, and I am so pleased and grateful that after a long period of treatment and recovery she has taken the time to share her experiences with us. As she speaks at length about how her diagnoses have affected her, particularly as a writer, it becomes clear that the medical act of naming and defining an ailment is not a simple a marker of health and illness, but a blurring of boundaries between therapy and healing, ability and disability, and caring and being cared for. 

The initial diagnosis of ‘brain tumour’ – such loaded and dreaded words – must have been emotionally catastrophic. Tell us a bit about the process of getting there, and your relationship to your work in progress, a memoir of walking and care, at this time.

I first noticed I was getting ill during the summer, and at almost the same time, started hatching a plan for a book that was going to be about my experiences of care during the pandemic, teaching / parenting / caring burnout, and walking. I’d actually written the first few chapters and signed a contract for the book more or less the month before I was diagnosed. 

 

 

And after the shock – and it was a shock (my symptoms were relatively minor – annoying rather than worrying) my second or third thought was, ‘I wonder what this means for the book’ – which up until that point had been about the experience of caring for others, and how that had been for me as a teacher, mother, witnesser of other people's sickness and dying. 

 

It became pretty clear to me in that moment that the book, because it did have this memoir element, would have to accommodate or address or acknowledge what was happening to me – that rubbing out of the strict boundaries between sick person and well person, carer and cared-for. It stopped me dead for a while, because – and this is memoir’s built in problem, I think – I just didn’t know how that bit of my story was going to work out.

 

I set off writing the book being curious about care post-pandemic – about how utterly burned out with mothering and teaching and befriending I felt myself to be. How I desperately wanted to be alone. I really figured myself as the ‘carer’ and everyone else as the ‘cared for’ as that’s how it felt to me at the time. But that wasn’t the truth. And it wasn’t the truth that when I was sick, I was merely cared for. It became clear to me that we’re all doing both, all of the time, and that what constitutes an act of care or being cared for is an extremely murky and muddy encounter indeed. I was very glad to find that out. 

 

 

Say more about your feelings around the fact that you didn’t feel seriously ill, and then, crudely, were faced with your mortality. 

 

The symptoms I was having, that sent me to the doctor, were really very minor. Some dizziness and problems with balance I put down to not eating enough, or perhaps having a blood sugar problem. A hearing loss that I didn’t quite believe (I went to get my hearing tested so I could tell the people I lived with that my hearing was fine, and they should make some effort to stop muttering…) and headaches, always behind my left ear, that weren’t at all debilitating, just new.

 

I was taken much more seriously than I expected to be, and sent pretty quickly for all kinds of scans, and right up until the doctor showed me the images of the tumour on his computer screen, I was still expecting to be told to eat more broccoli and stop malingering. I think I wanted to laugh when they told me. It was frightening, and strange, but also – and perhaps this is the writer in me – just not quite plausible. Who on earth (this is what I thought) gets an actual brain tumour?! There are still parts of me – after a year of treatment and pretty grim surgery and a huge hearing loss and all the after effects that come with that – that just don’t buy it. 

 

At the appointment when I received the diagnosis, I’d gone in quite well and left with a phone number to ring in case I woke up one morning with paralysis. I was told almost immediately that the type of tumour it was would almost certainly be benign – that was confirmed very quickly – but that because it was growing and pushing against my brain stem, it needed to come out. 

 

 

When you received the diagnosis, did you keep doing some writing, maybe as a way of working through things or did it take second place in your life?

 

Writing has always taken one of the first places in my life, along with some other things, and diagnosis didn’t change that, though I wasn’t too interested in using writing to work through my feelings or thoughts. Perhaps that working-through is one of the side-effects of writing about my own experiences, but it isn’t the motivation – I want to give the reader something that is useful to them, not the by-product excretions of a process that has been useful to me. 

 

However, some of the creative and technical questions of the book, like how much attention to pay to my own body, to my illness and recovery, how to acknowledge the truth of the experience of thinking I was well and healthy, then being told actually, I was wrong about that and I wasn’t – should to be in the book? How to give that a proper acknowledgement, but not let it overtake what I actually wanted to write about? These were questions about the book but also about my life – it was a kind of parallel process. 

 

And I remained, no matter how sick I became – as interested in the book’s other subjects: walking, Northernness, care in all its forms, post-pandemic ways of being outside and inside and in relationship to other people – as I ever was.

And after the shock – and it was a shock (my symptoms were relatively minor – annoying rather than worrying) my second or third thought was, ‘I wonder what this means for the book?’

It was frightening, and strange, but also – and perhaps this is the writer in me – just not quite plausible. Who on earth (this is what I thought) gets an actual brain tumour?!

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I did think about writing, and I was so angry that there wasn’t enough energy to do what was needed to keep me alive and functioning and to work.

The treatment I’d been having, the surgery, the drugs, the lumbar drain – well, it all hurt and was miserable and made me feel lots more sicker than I was when I’d gone to the doctor, and I knew it would all leave me with symptoms much worse than the ones I’d originally ‘presented’ with.

Your treatment and the complications sound incredibly gruelling. What was your relationship with writing at this time? Were you able to do any? Did you even think about writing? 

 

After the surgery, there was this long period where I was physically quite sick, my eyesight was very troubled, my hearing was awful (I have no hearing at all on one side, and a fairly moderate loss in the other – it means I can’t really hear speech other than as burbling, muttering, rustling – as if it comes from underwater) and I was just totally, totally exhausted. I was back and forth to two different hospitals for weeks and weeks. And other than the basics of eating and washing, I would have to choose what I’d do that day – open my mail, or have a visit from a friend, or sit downstairs for a bit and eat at the table – because more than one thing was just too much. I couldn’t write, couldn’t do much of anything, and I grieved it all. It was a couple of months I lived like that, and now it feels like no time at all, but at the time it felt like who I was had totally vanished and I was furious. I did think about writing, and I was so angry that there wasn’t enough energy to do what was needed to keep me alive and functioning and to work.

 

 

Did you move away from writing, perhaps into other forms of expression or other practices, because of your diagnosis and illness?

 

I remember at this time getting really engrossed in other kinds of making – I started sewing lessons and embarked on making some skirts and shirts (they’re not bad!) I made some experiments with embroidery, figuring out how to make amoebas out of napkins and coloured thread and when I was well enough, I was knitting again, cooking intricate meals – a kind of making-with-my-hands, without language – took over. 

 

This has always been important to me, but there was a time when I was too tired, and my eyesight too troubled to spend much time writing and reading, and when I could write, I felt a bit guilty about being productive on ‘research’ – which is what the academic world calls my creative work – when I was actually on sick leave, getting full pay for doing nothing and my colleagues covering all of my teaching. I realise that’s not an entirely sane thought (and I am absolutely certain that none of my colleagues would have been upset with me had I been doing more writing than the little bits I managed) but I think the whole experience made me think about writing and creativity as work, and related to my employment, in a slightly more pointed way. 

 

 

I am particularly interested in the two weeks you spent prone with a lumbar drain – what goes through one’s head in such a situation? 

 

Yes, so after the main surgery, I was in the hospital for a while, went home for a week, and during that week became more and more sick so had to go back. And what they’d discovered was the cerebrospinal fluid was both building up in my head, and leaking out of the gap in my skull. It was gruesome. I had a drain in my back, and other than the times when they’d turn it off so I could sit up and eat, I’d have to lie down flat. I didn’t have my hearing aids fitted then, and because of the wound in my head I couldn’t really wear my glasses either (I am extremely short sighed) so the whole period I spent in this fuzzy bubble of not really being able to attend to anything.

 

You’d imagine a person in that situation would be really bored, but I think I was just too sick to do anything except lie there. I texted my friends a bit, and I remember saving that up – thinking ‘right, I’ll have a sleep after lunch then I will be ready to reply to my WhatsApp messages’ – and though I’d read about this idea of spoons before, I’d never really experienced having to dole out my energy like that and that a good productive day was sending three texts.

 

 

Did your time spent bedbound have an impact on your writing?

 

I think the main thing I thought of that at that time was about the word ‘treat’ – for two reasons. The treatment I’d been having, the surgery, the drugs, the lumbar drain – well, it all hurt and was miserable and made me feel lots more sicker than I was when I’d gone to the doctor, and I knew it would all leave me with symptoms much worse than the ones I’d originally ‘presented’ with. I wasn’t as deaf before as I am now. I wasn’t managing neuro-fatigue before and I am now. I don’t have a brain tumour – that is good news – but in terms of my physical experience, I was not improved much by this process of ‘treatment’. 

 

And then ‘treat’ in its other sense – the nice one. All my friends were visiting me, or posting things, and I had these cards and presents and chocolate and books and flowers – something came every day for weeks. It was lovely. Treats! And this word ‘treat’ kept coming towards me, sometimes as an attack, sometimes a caress, and it was the strangest thing. I still want to write about that but I haven’t yet. 

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In 2019 Jenn Ashworth published Notes made While Falling, 

a memoir-in-essays about reading, writing and sickness.

I’m interested in your experience of the treatment as worse than the disease; how does this connect to your thoughts around care?

 

Yes – one of the things I thought about a lot when I was in that two week hospital stay, not being able to do anything, was how this 'treatment' – which to my body felt like torture ('I was all right until I went to the doctor,' I remember wailing, at once point) constituted 'care' – it hurt, it made me sick – it left me with side effects and a lifelong disability that I did not have before. 

 

This is partly a language problem, I think. A doctor said to me once, 'we will treat you on the ward, but you don't start recovering until you get home,' and that seemed to be a really nice way of thinking about medical wellness – which generally was something the doctors scanned for, assessed, deliberated on – not much to do with me, really – and then a more subjective sense of wellbeing, which for me was much more to do with being able to see my friends, read, play with my dog, get outside. 

 

So, I think it depends on what we think care is – an emotionally sustaining encounter (and I had lots of those – sometimes from other patients) or an invasive medical procedure that is absolutely necessary and disables you? The nurse who let me off the ward on my own to go and buy a bag of crisps the second they removed my drain and laughed when I got back, exhausted and sickly, having predictably overdone it? There were odd moments. The surgeon turning the screen on which she was looking at a scan of my tumour away just prior to the surgery. That is an action that could be read as patronising – paternalistic – or perhaps she was trying to care for me, not let me see something that might be frightening. 'Do you want to know how we do the operation?' she asked. 'I have to tell you the risks. But some people prefer not to know much about the procedure.' That giving me a choice – where it was possible – was that a kind of care? Sometimes I received it that way, sometimes it didn't. It is a messy, porous, unpredictable and risky thing. The day before I had my surgery my friend sent me a letter – I couldn't take it in much at the time, but when I looked at it again afterwards, she'd said she would witness all this for me – she'd see it and hear about it – she'd watch carefully what was happening. That felt like care too – that ability we humans have to attend carefully to someone else's experience – and that's something I've tried to do not only in my relationships with other humans, but in writing too – to be entirely present while making way for someone else's experiences. 

 

 

Your experience of diagnoses didn’t end with the tumour, tell us a bit more about the process of being diagnosed with hearing loss?

 

I knew to expect it, and I was taking lip-reading classes and ‘handling hearing loss at work’ zoom seminars and stuff long before I had my surgery. I used to lie in the bath with my ears under the water and think, ‘well, this isn’t so bad’ – but what I really didn’t understand is how exhausting it is, and how inexact lip reading is, and how angry it would make me, sometimes (quite a lot) at missing things, being left out – but also how reluctant I would be to ask for special accommodations, or how little I would know about what to ask for. 

 

 

I have never been deaf before, so even knowing what to ask for is a kind of work that I still get angry about having to use up my energy on. People will ask quite a lot ‘what do you need so this is accessible to you?’ as if when they took out the brain tumour they implanted a manual about being deaf and I would automatically know these things. Being angry isn’t reasonable – nobody knows what they don’t know and I am surrounded by such kind people. But it is part of how it is for me now. 

 

I think I uncovered some deep pockets of ableism in me too – I don’t like admitting this but it is a truth – a lot of beliefs about me just not trying hard enough, or correcting my attitude, or being positive, or whatever. Working with that and finding good information, gentleness, a bit of grace for everyone, including myself, is still a work in progress. And I am annoyed about having to do that work. 

 

 

In our initial conversation you said your recovery had been ‘gate-kept or signposted by doctors with diagnosis powers’ – tell us a little more about this. 

 

I remember being so horrified at being signposted towards a group for ‘people living with neurological disability.’ Properly horrified. As if that could apply to me. That’s the ableism in me again, I think, but also just the shock of toddling along through life being one thing, then having some other label being put on you, as well as all the associations (however unfair or inaccurate they are) that come with it. It sometimes felt like I wouldn’t be better until the people who had diagnosed me as ‘sick’ now gave me the passport back to the kingdom of the well. That it was a label I had to wait for. 

 

I am grateful for diagnosis, some days – it gave me information about what was going on with my body, and helped me understand what would need to happen in terms of treatment, and what I might expect to happen afterwards. It helped me access information and support that I wouldn’t have had otherwise. But diagnosis words are heavy words. I’ve had experience of mental ill-health that could have attracted (and did) all kinds of scary sounding diagnoses and I generally reject those as unhelpful for me (and each to their own – I know others who claim these names with something that looks like utter liberation) but with the brain stuff, it felt different – these surgeons working on my head needed to be able to talk to each other about it. 

 

 

What are your feelings around this label of ‘disabled’ that now applies to you?

 

Massively ambivalent. There are definitely things I find much more difficult to access now and that I need help with. I have a disabled person’s railcard now, which I feel guilty about having, because after a few months I was able to walk as well as I ever could (except when it is dark, when my balance is very bad) and I can even drive now. I always want to tell people that, when I’m on trains. ‘I am allowed this you know, even though when you look at me, you might not be able to tell.’

 

 

But I don’t feel less than I was. I feel more than I was: I’ve had all these interesting experiences and while I can’t quite say that I am grateful for them (yet) they definitely feel like additions rather than subtractions. And I also feel, at times, like a huge fraud being described as ‘disabled’ because look at all these things I can do. I worry that this ingrained ableism I have and am still working through is the thing that is stopping me embracing this term. I just don’t know. I feel mainly curious about it all.

 

 

How has your hearing loss affected your work as a teacher of writing? 

 

Well, the hearing makes workshopping much more difficult. I can’t really follow a conversation as it moves around the room quickly, and though there will be some extra tech that can help me with that, being close to other writers and finding some way of being in community with them has always been so important to me – both as a writer and a teacher of writing. I’m not far enough to know how that is going to be for me yet, but it is the most important thing I’ve noticed. ‘Normal’ for me was being a teacher and being available to a lot of people to help with their writing, and I’ve started to look around me and think ‘what do I need, what do I want?’ and that’s partly a physical question about accessibility, but I want to make it a bigger question about making myself available for being cared for more generally. 

 

I haven’t gone back to teaching yet, and when I do, I know I’m going to have to be really honest with my students about what I can hear and what I can’t, and ask for correction, and ask them to slow down a bit. I hope that while that kind of approach is going to be irritating (for me and maybe for them too) it might create some room for something else to happen, something new. I don’t know yet. 

 

I do think that the particular environments I work in – universities, mainly –  mean that I’ve had it a lot easier than someone in my situation with a different set of working environments. One of the nurses who looked after me said that a lot of people in my shoes need to change their careers. I’m lucky I’m only a writer.

People will ask quite a lot ‘what do you need so this is accessible to you?’ as if when they took out the brain tumour they implanted a manual about being deaf and I would automatically know these things.

I’ve had all these interesting experiences and while I can’t quite say that I am grateful for them (yet) they definitely feel like additions rather than subtractions.

Ghosted (2021), Jenn Ashworth's latest novel.

Do you think illness and recovery has changed the way you approach your writing? Has it motivated your writing in some way, perhaps in new directions?

 

Well, the walking and care book is just about done, and I think I found a way to acknowledge the tumour without being capsized by it. I hope so. And I’ve started work on a novel and just right now I realised that ‘recovery’ would be a really nice way of describing what the theme seems to be as it emerges in these first few chapters. Not cure. But I am interested in what it takes for us to be at ease with the state of being a bit battered, a bit fragile, a bit broken, a bit rough around the edges – of having scars and regrets and of carrying stuff, mental and physical – that cannot be fixed and needs something more from us than toleration. That is what the fiction is about. And I don’t think I’d have become interested in that if my experience of being alive had not forced me to see the necessity of working with that question.

 

 

I have this interest in carrying on, in what happens after the disaster, the explosion, the loss, the surgery. About what ‘recovery’ means when there is no cure. That is an interest I’ve had for a while – it came up in the walking book I’ve just finished, Notes Made While Falling kind of ended with this curiosity about ‘what happens next, when you aren’t going to get better?’ and Ghosted was about grief and its aftermaths and impacts on a relationship. Grief is one more of those experiences that won’t be cured, won’t get better, won’t ever shrink into the rear-view mirror. So, this interest isn’t a new element, but it feels brought into focus in a much clearer way.

 

I should also say – because I’ve spoken a lot about anger and ambivalence and difficulty – that I’ve also, in the last few months, felt such a lot of euphoria and exuberance and a lot of enthusiasm for addressing these questions creatively too. I think this might also be because of my age. I am in my forties now, and I hope to be alive for a very, very long time more, and I’ve also wasted enough of my life fucking around and whining. The first thought I have when I wake up most mornings is ‘I’m not in pain’ and I am delighted about that as it really was awful for a while. I can move around, and I can see my friends and I can do more or less what I want without anything hurting. I cannot believe I lived most of my life not really understanding what an unearned miracle that is. The second thought is ‘I can’t hear’ and it always feels a little easier to handle that second thought after I’ve fully let myself experience the joy of the first one.  

I’ve started work on a novel and just right now I realised that ‘recovery’ would be a really nice way of describing what the theme seems to be as it emerges in these first few chapters. Not cure.

Jenn Ashworth was interviewed by Eva Aldea

About Jenn Ashworth 

About Jenn

Jenn Ashworth was born in 1982 in Preston. She studied at Newnham College, Cambridge and the Centre for New Writing at the University of Manchester. Before becoming a writer, she worked as a librarian in a prison. Her first novel, A Kind of Intimacy, was published in 2009 and won a Betty Trask Award. On the publication of her second, Cold Light (Sceptre, 2011) she was featured on the BBC’s The Culture Show as one of the UK’s twelve best new writers. Her third novel The Friday Gospels (2013) and her fourth Fell (2016) are also published by Sceptre. Ashworth has also published short fiction and won an award for her blog, Every Day I Lie a Little. Her work has been compared to both Ruth Rendell and Patricia Highsmith; all her novels to date have been set in the North West of England. In 2019 she published a memoir-in-essays about reading, writing and sickness called Notes Made While Falling which was a New Statesman Book of the Year and shortlisted for the Gordon Burn Prize. Her latest novel is Ghosted: A Love Story. She lives in Lancashire, is a Fellow of the Royal Society of Literature and is a Professor of Writing at Lancaster University.

https://jennashworth.co.uk/

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