Sinéad Gleeson on Solidarity in Sickness, Isolation and Empathy
With the UK government currently advising ‘social distancing’ and the country expecting further preventative measures against the coronavirus pandemic, Sinéad Gleeson’s debut book Constellations: Reflections from Life – a collection of essays about the body, medicine, politics and art – could not have come at a more interesting time.
Shortlisted for the Rathbones Folio Prize 2020, Constellations includes chapter headings as various as ‘Hair’, ‘60,000 Miles of Blood’ and ‘The Adventure Narrative’. Each chapter begins with the illustration of a constellation. The book explores, amongst other things, cultural attitudes to health and sickness, as well as Gleeson’s own experience as a patient, first as a young arthritic and later as a survivor of leukemia.
Speaking with Gleeson on the phone from her home in Ireland, the author shares her thoughts on solidarity in sickness, combatting isolation and what illness has to teach us about empathy.
Shortly after your leukemia diagnosis, you set yourself the goal of writing a book. Was this always going to be your first?
When I said that to my mother in the hospital — ‘I’m not going to die, I’m going to write a book’ — I literally pulled that out of nowhere. I didn’t remember that I had said it until my mother told me when I was working on the book. But even then, I didn’t know what kind it was going to be.
The book is a reflection on the body, health and sickness. We’re undergoing radical changes in how we see the body in the public space. What do you make of the COVID-19 pandemic?
Obviously I wrote the book a couple of years ago, and I had no idea that this was going to happen. But it certainly does feel very timely, because lots of the book deals with health and doctors and the isolation of illness.
Illness is a very lonely place — it’s incredibly boring, but it also cuts you off from your own life: your hobbies, your job, your friends and family. I think that’s what’s happening at the moment — everybody is listening to good advice and taking themselves away so they don’t get sick.
In a way, it sort of feels less lonely, this pandemic, because we all feel like we’re in this together. Everybody’s at risk and we all have to be apart to stay better, but also cope with what’s going on. So it’s either a really good idea to have a book like this out, or a really bad one, at the moment. Very on-brand or not at all.
The first line of the book is ‘The body is an afterthought.’ We never think about our bodies if they are healthy and functioning — it’s only when something goes wrong, or something like this happens, that people are thinking about their lungs or their immune system. I’m really interested in that idea, that we don’t think about it until it becomes a problem.
For many, illness is isolating – elsewhere you mention that ‘stillness’ contains the word ‘illness’, and that hopefully being a patient is only temporarily debilitating, but I wondered if we ever truly stop being patients, literally ‘those who wait’?
I also say in the book that we’re all future, or past, or present patients. It’s a rare human being, and a very lucky one, who ends up never being a patient at some point in your life. When you’re outside of it, when you’re well — the psalm-type thing of ‘the kingdom of the sick’ and the ‘kingdom of the well’ — you never think about being sick. All you want to do is be in the kingdom of the well.
I’m asked a lot about what I think the book is about. It’s about a lot of things: but it’s also massively about empathy, and how we relate to each other in the world; how we treat other people, how we’d like to be treated. And this whole pandemic is making us think about that. We’ve seen the solidarity: people shopping for others, people trying to do good deeds, that sense of humanity in people.
To be a patient is hopefully a temporary thing for a lot of people, but not always the case: there are people who are terminally ill, people chronically ill with certain conditions that last forever. For the rest of us, who are not those people, that’s something we should be reminded of, rather than complaining about minor things.
You distinguish pain from passion in the book: passion as something that people can share in, and pain as something isolating, that we don’t have the language for. It reminded me of your Catholic upbringing in Ireland. Isn’t Christ a figure that reconciles the two, both passion and pain?
Well, I’m an incredibly lapsed Catholic, but I think we all know that the crucifixion of Jesus was called the ‘Passion’. Growing up in Ireland, Catholicism was everywhere, and because iconography and the regional elements of religion are often very Christ-focused, it’s something that was inescapable for a long time. Sure, a lot of people still go to mass in Ireland, but there isn’t anything like the same stranglehold.
I’m glad we’re not that Ireland anymore, and we’ve moved away from that, as we wouldn’t have had the success we had in the referenda: repealing the Eighth Amendment and same-sex marriage. We were the first country in the world to vote via referendum, ahead of the UK and the US. That’s indicative of how Ireland has changed, and how Christ is maybe receding a little more into the background for some people. I respect people’s religion, if they get comfort and solace from it, but I personally don’t.
I’m mindful that Constellations is, in many ways, a personal book, but that interviewers often fail to ask the right questions here. Assumptions are made about women’s bodies – societally, and by some doctors too – as well as women’s writing. It’s difficult to know where to begin with these things, but is this frustrating for you?
You’re spot-on. I think there’s a couple of aspects to that: the book is about a lot of things, and a lot of stuff about art, and politics, and history, and class, but people tend to focus on the most personal aspects. That could be because of the emotional impact on people, or that people relate to it. I also think that it’s not unrelated to the fact that I’m female.
I’ve done events with other essayists who are male, who have also written very personal books — myself and Emilie Pine. And we get told that our books are personal, but the men don’t. And I find that very interesting, the dichotomy and the gendering to conventions, what people think we write about. But at the same time, I’ve had a couple of amazing interviewers. When I do events, there are always people in the audience who want to ask questions about the craft.
And what about conversations with doctors? Presumably being misunderstood has far greater implications in a hospital environment.
The idea of not being heard as a patient is very frightening. If it hasn’t happened to us, it’s happened to a parent or sibling. My experience with terrible doctors has mainly been, but not exclusively, male doctors, who I felt were rushing you out the door as soon as you came in, or literally countering what you had said to them.
In my case, with the hip replacement, I was literally bleeding, and was being told it was something else. I felt I wasn’t being listened to. And it’s not just to do with gender, it’s also to do with class, with race. Women of colour are more likely to die in childbirth than white women. Leslie Jamison, the brilliant American essayist, of whom I am a big admirer, she talks about how [these issues manifest]. If a man and a woman go to A&E and explain they have the same problem, the man is more likely to be seen quicker and given painkillers.
There is a definite gendering [in approaches to treatment], but it also happens to the elderly. There are a lot of elderly patients who don’t have someone to look after them or don’t have a son or daughter who will talk to the doctor and ask for corrections. Or they feel they don’t have the education or the language to ask the doctors.
Language is vital here. Yet medical jargon can be estranging or used to homogenise conditions that vary subtly between cases. Is part of writing this book about rescuing ‘the poverty of the language’ around illness, which is Virginia Woolf’s phrase you singled out?
I think medical language is a secret language, kind of an Esperanto. But I think it has its own musicality: a lot of the words come from Latin and are long and complicated, and there’s something in the wonderful intonation that goes up and down. I love the sound of it.
In my case, I found you have to lobby for yourself, you have try and get people on board who are superior or dismissive of you, and one way to do that is the intrigue to learn their language. So if you learn the phrases, then you know what they’re talking about, you can use the words they use. There’s already a commonality, and you’re taken a little bit more seriously.
At one point, I was asked by a doctor ‘You’re a doctor then?’ and I was like, ‘No I’m not! I’m just interested in my own bodily narrative.’ But no-one else is going to know it like you. I think we need that language feel like we’re on equal footing with medical personnel — I did, anyway. Maybe it’s not the same for every patient.
What do you make of the trend in publishing doctors’ memoirs? Unsurprisingly perhaps, given the field, most of the authors are male.
There are quite a few, and it is one of the most interesting jobs you can do. In all my discussions with doctors I hear the hours are very long, doctors are overworked; when they’re younger they’re very much underpaid, it’s really difficult, and you really have to want to do it.
I say in the book that, in the past, when I was first dealing with orthopaedic doctors, you could visit the doctors’ and never even encounter a woman; it was a very male-dominated field. There’s a couple of great medical memoirs: Rachel Clarke’s wonderful book, Your Life in My Hands. But in terms of female surgeons there haven’t been as many.
Tell us about your writing process. Thinking of Woolf again, generations have grown up with the belief that they should have a room of one’s own. You offer a critique here, that writing in the family home has advantages, that it’s an important and valid experience too.
The book wouldn’t have been the book it is without, partially, my children, and what I think about motherhood; what it is to be a mother and a writer and a worker. Obviously, I’m interested in the gendered aspect of it, because I’ve had this conversation very frankly with men who write: women are often asked ‘How do you juggle it all’, and men are not. It’s just assumed that he’s making it all work, whereas women are often asked to justify that.
The flipside of that is that I don’t mind answering questions if it’s another woman who writes, just asking in a frustrated way ‘How am I going to do it? I feel like I don’t have the time’. I don’t feel like it’s an interesting one to answer, but I feel we should ask it to all writers who are parents, not just mothers.
Sometimes the idea of interruptions, where you’re in the middle of writing and there’s somebody calling you or telling you about the dog, or whatever it is – that does add to the thinking. It interrupts you, but in a good way, and also makes you think. There’s something immersive about that kind of writing where there isn’t an escape.
Le Corbusier, who you quote, says that ‘a house is a machine for living’ – so what, then, is a hospital? You answer your question by calling them warehouses of quarantine, which feels pertinent.
I’m fascinated by hospitals, because they are these big, strange, spaces, but they are like a weird version of a home — there are beds, and meals, and people — but no-one ever wants to be in there. They’re the most horrifying places in terms of noise and din and interruptions. They’re also really bad places to get well: there are lots of sick people around, it’s very noisy, it’s hard to sleep, there’s always someone coming to take your temperature.
The Le Corbusier statement is to sort of run it up against the hospital, because for me it felt like a panopticon. You’re always under the microscope, literally. You’re always being watched, there isn’t any privacy (despite the fact that all patients are entitled to privacy). I find them places where you feel very alone, and yet you’re not: you’re never very far from another patient, or a staff member. They’re kind of gallery-esque, as well.
Hospitals have operating theatres, as you point out in your book.
Things happen in them, and things are done to you as opposed to you doing things for yourself. They are a very performative kind of space. A large part of recovery is other people: giving you drugs, performing surgery on you, making you better.
Why the title Constellations? We say that limbs articulate, connect and join together, and I wondered how astronomy might relate to the book’s anatomical themes.
I was trying to explain the book and I thought, ‘Well, maybe it’s up to the reader to figure out what this book is.’ I had quite a bit of metal in my body because I’d had lots of surgery, and I said to my agent ‘I think of the metal like stars, glistening under the skin’. It was actually a working title — I wasn’t sure I wanted to keep it, but the publisher liked it.
I was always really interested in astronomy and the idea of people navigating the world by using the stars. I’ve always found them, no matter where I was in the world. They were like an anchor point. You can see the Plough no matter if you’re in New Zealand or America or Europe. I spent a lot of time inside and bed-bound, so looking at the sky was quite comforting, because it reminded me of the world out there, that I’ll get back out there at some point, even if I’ve got three months ahead of me not being able to get out of bed.
But I think the main reason is to do with the form. I started to write these essays – you can read them in any order in this book, if you like. You don’t have to read one to make sense of another. To me, they overlap, and I didn’t see these connections and overlaps until I had finished writing the book. So they’re distinct stars all by themselves, and a constellation is a collection of stars that are all standalone things, but they all make sense in one big context.
Stars help us navigate the world, and your book invites us to navigate the body. Similarly, it combats forms of isolation and connects people, connects the dots.
Absolutely. I talk about the solidarity in sickness — the solidarity of knowing somebody went through something. Two people I know who have cancer read the book and said to me, ‘I wish I’d read it before I talked to the doctor I had, who was awful and dismissive and didn’t listen to me, and I was pleading.’ They felt that the book has taught them that you need to speak up for yourself. You’re not out of line challenging somebody, or asking for a second opinion, or saying ‘Look, I really am in pain, and I need you to listen to me.’
Do you see something like the coronavirus changing society fundamentally? Do you think this is a turning point?
I think it could be. If anything, it is teaching us empathy, whether that’s donating money to food banks, or checking in on elderly neighbours. It’s made us realise none of us are invincible or impervious to ill health, even if you’re somebody that runs and is a vegan and doing everything right.
It’s also making us reassess what we put our bodies through — commuting, working for too long, staring at screens for too long. I’ve been a freelancer for 20 years, and it hasn’t occurred to a lot of people that you can have a different kind of life.
I hope there are positives and people think ‘I should think about my work-life balance, so that I am healthier and don’t get ill’. It’s a really difficult time, and I wonder what people will be reading.
Maybe people will read a book like this and think, ‘OK, I’ve been lucky.’
Interview by Jack Solloway.
Sinéad Gleeson’s debut collection Constellations: Reflections from Life (Picador 2019) is shortlisted for the Rathbones Folio Prize 2020, and won Non-Fiction Book of the Year at 2019 Irish Book Awards. Her essays have been published by Granta, Winter Papers and Gorse, and broadcast by BBC and RTÉ. Her short stories have been featured in several anthologies including Being Various: New Irish Short Stories (Faber, 2019) and Repeal the 8th (Unbound, 2018). She has edited the award-winning anthologies The Long Gaze Back: An Anthology of Irish Women Writers and The Glass Shore: Short Stories by Women Writers from the North of Ireland, with The Art of Glimpse: 100 Irish Short Stories, forthcoming from Head of Zeus in October 2020. She is currently working on a novel.
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