For Books’ Sake talks to: Susana Moreira Marques
22nd Sep 2015
Susana took some time out of her whirlwind schedule to talk with our features editor Marion Rankine about illness and ageing in society, the vital role of journalism, and the unexpectedly transformative experience of living and working so closely with death.
We’re getting pretty close to the UK release date now. How are you feeling? Excited, nervous?
It [already] came out in Portugal, so I think I had all the nervousness there. It’s very exciting to be published in English because it opens the reader[ship] so much … anyone can read it in English, anywhere in the world. And I like the idea that it’s getting published here, after Portugal: I see [London] as a kind of a second home, because I spent time here, and I have friends here. And it’s so difficult to get published in English – as you probably know, there isn’t much translation being published here, and I think there’s even less translation for non-fiction, especially from first-time authors. So [this being my] first book, and being unknown, and [its] not being a novel, I think it’s pretty extraordinary. I wasn’t expecting it at all. I’m also very curious to see how it is going to be read by other readers who don’t know Portugal, how certain things are going to come across, how the reactions are going to be, if the emotions are going to be different… it’s going to be very interesting. I’m looking forward to it.
It’s certainly a wonderful book; I read it a few days ago and it was unlike anything I’d read before. You’re usually a journalist – how did you go about approaching the form of the book? Did it sort of emerge, or did you have it in mind to begin with?
It emerged. I thought I was going to do much more traditional reporting. Not reporting reporting – a kind of literary reportage, if you will. Very early on, when I was doing the research, I was following the healthcare team around, taking notes, interviewing people – the work was very much like a journalist’s work. I knew I wanted to follow a few cases, a few families, so I could get closer to them, because it was such an intimate moment that they were living, such a delicate situation, and I wanted to go slow, I wanted to gain their trust, I wanted to do something with time, and get into some depth with trying to understand what they were feeling and thinking, rather than just having the first impression. But when I started to write, it just didn’t feel right to write it as a normal travel account – you know, what you have [in] most travel books, or literary journalism. I was looking for something that could capture the intensity of it, that would let those people and those situations breathe, you know? To give it space, their own space. So I started to write a kind of normal travel diary account thing, and I just felt it wasn’t right. And I had been at the same time writing these snippets, these bits and pieces, that I didn’t know what they were for. And then I realised that I could do something with those fragments. The beginning of the book is exactly what I felt when I was writing, which was: we cannot write about this as we’ve always written, we need to find new words, we need to find a new way.
How did you get involved with the project?
It was part by coincidence, part out of interest in the subject. I started to be interested in palliative care when I lost two of my grandparents in a space of six months. Neither of them had very good deaths. They both died alone – my grandfather in a hospital, my grandmother in a home –with no family there, and I think they did suffer a lot at the end of their lives. I was really angry with it afterwards, with the feeling that I didn’t do more for them. And that got me thinking about how we die, and why so many people die in hospitals and why so many people don’t have good care at the end of their lives, and I’d never thought about it much before to be honest. I realised [that] people were kind of embarrassed at talking about it – at least in Portugal. I’m not sure if embarrassment was the reason, or just a feeling of privacy – that there are certain things you do not talk about with other people. I felt that other people didn’t really talk about sickness and dying, and I realised there were a lot of people from my generation or older that were caring for parents or grandparents and were going through very difficult situations and would not share it with those outside.
I had a friend who does research in palliative care, and I started asking her about it, wanting to know more about her work. At some point she told me that I should interview the director of the health department at the Calouste Gulbenkian Foundation in Lisbon, because they were investing a lot in palliative care, and they had some very interesting projects. So I contacted him [and] he told me about a project he was doing in Trás-os-Montes, in the north interior of Portugal. I knew this was a rural area, with lots of small villages, and that life could be tough there. People were leaving, so services were closing down, and people were confronting a lot of problems there. And I was so interested in the project and I told them I wanted to do a story. I was thinking about just doing a feature and he told me he thought it was so important to get this project outside of Trás-os-Montes, that would take it to a larger public. I was so lucky; it just fell from the sky.
I decided I wanted to follow the people for a period of time, so I could see how they were living through time, as their family members got worse, and I could follow people as they were living through it. Which made it more difficult for me, because obviously I saw people getting worse, and eventually dying, but I thought that was what made sense.
How did you find that? Was it very confronting at first?
It was. At several levels. First of all because when you’re not used to [working] with patients, sick people, it is very shocking, it is hard to deal with. I didn’t have any preparation as a health care professional so I was totally unprepared for it. At the beginning I was following the health care team, and they have a very intense rhythm, they see a lot of patients in one day, and it’s very tiring, and very trying as well – you go from one house to the other and you see people in very difficult situations, and you’re there for ten minutes. [Then] you go to another person who is sick, and you go to another and you go to another, and you get to the end of the day and you’ve seen like ten people who are – cancer, or Alzheimer’s or – you get to the end of the day like [sighs deeply] – it’s heavy. And you think, how do the doctors and nurses do it?
So that was a shock at first, and at another level it was shocking to see how some of these people lived in these villages – not because of their sickness but because of their economic and social condition. That was for me surprising, because you know, I’m from Porto, and then I lived in Lisbon, so I’ve always been in the cities, so I thought I was living in a country that lived in the twenty-first century! [laughs] And then I went to some of these places and I couldn’t believe that people were living in certain conditions in Portugal in 2011. I just couldn’t. There were people who had houses that were half-built, people who had improvised toilets – they didn’t have basic conditions. And a lot of people who are uneducated and often they do not know how to deal with patients, for example with disabled people. Disabled people, for example, are treated as dumb people, or almost just not people. People would have disabled children, and these children grow up almost like – I wouldn’t say animals because that’s too strong – but without having any kind of access to anything, just being closed in the house. They would be seen as disabled people who cannot do anything, and obviously their parents did not do it on purpose to hurt them, but just out of ignorance. If you were born disabled at that time you would not, especially in the countryside, have access to care, to special education – that’s all fairly recent. So it’s really heartbreaking. Sometimes not just because of the disease, which is always heartbreaking, but because the people were not in a good place, a good situation, that they could deal with it with more ease. So I did confront a lot of things there.
At the same time, I had arrived in Portugal shortly before, and this trip was a way of reconnecting with my country. In a way I felt that being in Lisbon I was not actually understanding what my country was, that I just had part of the picture. And that was an important trip for me as well in that sense: it was a discovery of my own country and people, and my own presence.
Your book made me think about city-spaces and how, quite often, people who are ill and dying are isolated in many ways – such that when you walk around a city you’re not a part of the experience of illness at all.
It’s full of contradictions, because these people are very isolated from what we see as ‘the world’, the centre, the axis to things – and at the same time they do come from a lifestyle in the countryside where you care for each other. For example when people do the grape – how do you call it – when you collect the grapes to make the wine –
The grape harvest, thank you! In the autumn they do it all together. The families get together one weekend to harvest this family’s grapes, and the other weekend they all get together again and they harvest the other grapes of the other family. They do it all together, partly because most villages are so small, it would be impossible for one family – or an old couple – to do it by themselves – but also because it’s a tradition, and in a way they know each other and they have a very strong feeling of belonging, and of place, and of it being their place, in a way that I do not think we have in the cities, or at least I don’t! I loved going there and seeing that, and having that feeling of being in a place and being part of it. And being more present where you are – because you do not have so many stimulus from everywhere, and you are not thinking about all the things you have to do when you get home and you look at your laptop and call this person – time changes. It does. And they feel good there, they have this very strong sense of wanting to die in their place as well.
I remember this woman, this old lady, her husband had died and the old lady was left there alone – her name was Anna. And she stayed in the village and she had this routine of taking care of the plot of land that she had – even by herself, at eighty, she would take care of her vegetable garden. She had a lot of cherry trees – the best cherries I’ve tasted in my life – and she would get help from other people in her village. She had a donkey she wanted to take care of, she had her house, where she had lived with [her husband] for all her life – since she was 18, you know? She had never left that village. And she would go every day to the cemetery to take care of her husband’s grave and to speak to him. And her daughter kept trying to convince her to go to Lisbon, and she would go, for periods, but when she was in the city she would just stay at home, and not be able to go out on the streets and do things – because she was 80 and she had lived all her life in the village – so she kept telling them that she did not want to go. And even if she would die sooner, because of that, she wanted to die in her village.
So this project I was following was a pilot project, to see how it could help people die at home. There are a lot of studies that show that if people would be able to choose, they would rather die at home. But they just can’t, because usually you do not have the conditions at home to be able to spend your last days there. It made a lot of sense to do that project in Trás-os-Montes because these are villages that are very far even from small towns that do not have a lot of health facilities. Often people would have to go to bigger towns or cities 100km, 200km away. If you’re 80 and your husband is in the hospital and you don’t drive – there isn’t a lot of public transport in this area, some of the villages do not even have buses, so people would have to pay cabs to get to town. Cabs are expensive and they can’t afford it. So the difference that this health team made was amazing, the difference they made to these people was incredible.
Yeah, that really shone through in the book: the sense of dignity that was being granted by giving people the right to die in their own places, surrounded by the people they know. Another thing that really came through was a sense of this closeness to death being a reaffirmation of life. I thought that was a really beautiful theme in it: that death is not the end of everything because it reminds you that there is always more, there are always new beginnings. Was that a feeling that developed over time?
Yes, absolutely, and I’m very happy that you say that because that was one of the most important things for me that I wanted to come across. More than making people reflect about palliative care and discuss it, I really wanted the reader to realise how good it is to be alive. Because that was what the people I was spending time with were transmitting to me. [You were] asking if it was a shock at the beginning and it was, it was really a shock, it was heartbreaking and ugly, it was ugly to see. And you think, do I really want to see this? Am I going to be able to deal with these things without being afraid, without being depressed? And I thought that was the risk, but in fact the exact opposite happened. I actually got less depressed [laughs]… When you are in an extreme situation like that, you realise that life is so precious, and a lot of things that you worry about aren’t really that important. It puts things in perspective in such a strong way. So rather than being depressed because you are near people who are sick, and thinking, oh my god, I’m going to die as well – because of course you are – you see it, and because you see it you are less afraid of it. You know it’s going to happen and you accept it, and then you think okay, but now I am alive, and I need to make sure I use this time because these people cannot do it anymore, but I still can. That was a voyage for me – besides the physical trip, this was a voyage I did: facing sickness, facing physical decay, facing [the fact] that we’re going to die, and realising how beautiful it is to be alive. I wanted the reader to feel that, so in a way I constructed the book like that: you approach it, you get into it, and then you realise that you are alive.
Because everyday things, the most normal moments of our lives, are special: the moment you had a child, the moment you travel, and even if it seems like a common thing, it is not common, and even these common things, some people went through them in a very uncommon way.The importance of stories came through very clearly, particularly with the elderly couple sitting on the porch and bouncing their life story back and forth between them. I guess it’s a sense of meaning-making towards the end…
They were such a beautiful couple, and they were the most difficult bit to translate. They speak in such a particular way – it’s so beautiful, their speech, and it was them who made me want to put it in direct speech. I was in this area of countryside – old people, they speak in a different way to people in cities – they use certain idiomatic expressions and even certain words, they sometimes construct phrases slightly different, even with some grammatical mistakes which are a part of their way of speaking, the way of speaking of the people there. They use a lot of words from agriculture, and images, the images that they use are different, and when I was listening to the interviews and writing them down I was thinking, this is a treasure, to have these people talking like this. The way they spoke was so beautiful that I decided to keep it, to sort of leave their voice – of course it was very difficult for the translator [laughs] she did suffer…
I can imagine! How did it feel reading the translation? I was at the Independent Foreign Fiction Prize ceremony a few weeks ago, and Jenny Erpenbeck won for The End of Days, and she said, regarding her translator’s work, that it’s quite miraculous to read, “because they’re her words, but it’s my book.” That really struck me. Did it feel similar to that at all when you were reading it?
I read it for the first time in English a few weeks ago, in Lisbon. And actually I was surprised at how good I felt reading it, how comfortable, and how right I felt. So I did feel it was my words. Of course it’s Julia’s work and she asked me lots of questions during the process, and sometimes she had different opinions from mine and all that, but I did feel it was very close to me. She really managed to translate not just the words but the feeling, the tone, and it was hard to within the first part, it was so hard to do, and it felt right, with the cadence, the music – she did it so so well.
During the process sometimes I think it’s a blessing when you can understand the language it’s being translated into. But it can also work the other way, where you almost want to rewrite it, because you know the language, so you start to have doubts, you want to make suggestions – but you think, that’s not my mother tongue, let’s just shhhhhh… [laughs]. But it was great to see Julia working, and there were points at which I thought, this is actually more difficult than writing it.
We were talking before about cities being isolated from age, from elderly people – people with disabilities as well are often quite excluded from cities in those respects – do you feel, through doing this work, that it would be beneficial to have better integration somehow? I was reading recently about a nursing home near Amsterdam who’ve done a project where students come to live for very reduced rent, and they talk with the old people, and both parties benefit enormously: elderly people don’t feel they’re living in this universe comprised entirely of elderly people, and the younger people benefit from all their wisdom and experience and so on –
I think it’s very important. There’s a lot of people who live alone, in Lisbon, and often they are very isolated. I don’t know if this happens in London, but in the historical neighbourhoods of Lisbon, lots of buildings don’t have lifts, they only have stairs. So you do have a lot of people who live on the second floor, the third floor, and they stop being able to come downstairs. They get imprisoned in their own homes. There were a couple of cases that came out in the media a few years ago, and people started to realise that this was happening: there were old people who had no family, and start to be sick, can’t do their shopping and so on. There were stories of some people who were dying in their homes and nobody would find out until months after. So now there are some charities who track these people and check on them and help with bringing food and groceries and things like that.
But Portugal has a depressing amount of old people living alone. And it went up a lot in the last years. I think because there are a lot of young people emigrating because of the crisis, which means that parents or grandparents are left alone. Portugal, as I was saying, is one of the most elderly countries in the world. Because of the economy it’s actually getting worse, because there are even less children. And I do think if we do not think about that urgently, about how we’re going to have a large elderly population and what to do – Often elderly people are well, they’re just old. Lots of them are well, and they can do things, they can participate in society, they have a lot to contribute – and I do think there was an attitude of, you’re retired, and that’s it: you’re retired. I think Portugal’s still catching up. I see that in other European countries old people do more things: they are volunteers in the museums, they have a lot of meetings, activities, there is more for them to do. In Portugal they are still catching up because it’s still very prevailing, this idea that old people are old, and they have to sit at home.
This idea that they’ve ceased to have function or direction…
And I do think that young people have a lot to learn from them. Of course if you’re 20 you’re not really interested. But after a certain age, maybe after 30 you start to be interested, you start to understand what you can get from them.
May I ask what drove you to become a writer? There’s a very strong humanitarian slant to your work, I mean you won an award for human rights journalism from UNESCO…
When I was growing up I didn’t think that I could be a writer. I thought writers were special people who lived on another planet [laughs]. My parents were engineers, my grandparents were factory workers, so they were very practical people: you had to study to get a job, that was pretty much the frame of mind. There was not one artist in the family – not even an architect, nothing! [laughs] So for me it was something very very distant, and although I was reading and writing, I never took it seriously. Because all my family were in more technical things, when I had to choose an area of study I chose sciences. My idea was to study medicine and become a doctor. And in a way – I’m not sure if this makes sense, because they are completely different professions – but in my mind somehow they were connected. They seemed to me to be the two most noble professions in the world, being a doctor and being a writer. I do not think that practically, in reality, they’re that noble on an everyday level [laughs] – but you know, as an idea and as a dream and as a goal, I think they are. And looking back now I think that they are connected because there is a feeling of helping people. Obviously when you’re a doctor [it’s] in a much more direct way, but so many writers helped me throughout my life: you search for ways of understanding the world, you search for common experience, common feelings, you search for people who are like you, who think like you, who feel like you, you search for people who feel completely different and you want to see how they feel – so I do think there’s a connection there.
I became a journalist because I liked to write but I did not know better: I needed a job to make money, I could not conceive of being a writer or an artist. But when I started to study journalism I actually got into it, I really enjoyed it. Because I love working with people and listening to their stories and looking for stories out there. When I was in London I did correspondence, more newsy journalism, [which] I don’t do so much [now], I never liked it much. But I do love a certain type of journalism where you give voice to people who maybe don’t have a voice, where you look for stories which are not news stories but they still are important. And I love being out there in the street and being in different places and looking for people and talking to them, and it’s such a privilege, when you are with people and they let you in their houses, and you can see how they live, and they tell you amazing stories from their lives, and you feel so privileged, you know?
And people have such amazing adventures – and everyone really has a story, and my experience is that when you speak with people, even if they say, I do not have anything to tell you, my life is like everyone else’s lives, or, I never did anything special or important so I have nothing to tell you – if you dig, you find stories in everything. Because everyday things, the most normal moments of our lives, are special: the moment you had a child, the moment you travel, and even if it seems like a common thing, it is not common, and even these common things, some people went through them in a very uncommon way. I like to speak with people who normally do not speak about anything, and usually no one asks them for an opinion. I like to talk to them precisely because they’re not used to giving an opinion, so everything is very intense and fresh within them, because people who talk too much, when you give an interview – I hope I’m not talking too much! [laughs] – but if you interview someone who’s used to being interviewed they answer things in a certain way. I’m not saying they’re not being honest, but there is a certain [sense of]: you’ve thought about it, you know how you want to come across. Then you talk to people who’ve never been interviewed, they’re not used to people being interested in their lives, they actually have a lot of things to say, and they do have a straightforwardness about it, it’s beautiful.
I love that part of the job, and I would not want to stop working as a journalist. Being in a newspaper gave me a lot of access to people and stories. And I think I became a much better listener since I became a journalist. I don’t think I was a very good listener before.
Yeah, it’s an immense role of trust isn’t it. You’re carrying a lot of responsibility to people to represent them faithfully.
Yeah, and I really am interested, I could listen to them for hours. And I love talking to old people because they’ve lived so much, it’s incredible, and they have access to something you could not have access to except through them, and that’s the past. You can go to villages, you can go and see things, but the past – as a place, as a way of thinking, of being in the world – I find that so interesting. You learn so much.