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Monday 21 April 2014

Nuala O' Faolain interview: ‘I don’t want more time. As soon as I heard I was going to die, the goodness went from life’

Nuala O'Faolain tells of her anger and upset as she faces last weeks on Earth

The writer Nuala O' Faolain is dying of cancer. In an emotion-charged interview with Marian Finucane broadcast on RTE yesterday she revealed that she was diagnosed six weeks ago in New York. She said the cancer, which began in her lungs but has now spread to her brain and liver, is incurable. She has turned down the option of chemotherapy, which could help prolong her life

Transcript of Interview by Marian Finucane with Nuala O'Faolain MF: Nuala O'Faolain you've been on the programme a number of times in connection with your writing and you wrote your memoir "Are You Somebody" in a way that it seemed it explained yourself to you and now you're doing this interview in a completely different context and I understand that it's to explain yourself to yourself as well as to us as well.

NO'F: Yeah, it must look as if I'm an awful divil for publicity altogether and, in a sense, since I wrote "Are You Somebody" and it reached what is truth to say was a huge response, I have in a sense put myself out there. And the interviews I gave back then 10 or 11 years ago are like one bookend in which I presented myself and lots of people didn't like me and lots of people did.

But one way or another it was company for me who happens to be a childless middle-aged woman.

Now I am actually dying and I have Metastatic cancer in three different parts of my body.

And, somehow or another, it helps me to set up the other bookend and to say to those people who were interested in me and did care about me to say to them 'well this is how it is for me now for what its worth'.

MF: When were you diagnosed?

NO'F: About six weeks ago I was in New York. I have a terrific life to be absolutely honest with you. I managed to buy a little room that I absolutely loved and the important thing about the room is that it was mine, 'cause for several years myself and this man I liked were trying to pretend that I was part of his family, him and his 14- year-old daughter who lived in a house in Brooklyn. I had at last managed to negotiate that I wasn't ever going to be any good of a stepmother, that she didn't need me, that she had a good mother and a good father.

I didn't need her, I didn't want to spend my life watching her doing her homework. So I gradually semi moved out and I used to go to music and meet my friends and eat and I was writing a book and I'd applied for a fellowship to write a book and I had Ireland. So everything was well.

But I was walking along one day after fitness class and my right side began to drag and I eventually went to A&E in a New York hospital, a thing I wouldn't wish anyone to do.

MF: Why?

NO'F: Because it is full of chaos and people who have been shot and run over and, I couldn't get over this, I spent 13 hours on a little gurney and the people beside me were there for unhappiness.

Anyway, I was sitting there waiting to hear what was wrong with my right leg when the guy came past and said that 'your CAT scan shows that you have two brain tumours and we're going to do X-rays to see where they're from, they're not primaries'. And that is the first ever I knew.

MF: He said that in the middle of A&E.

N.O'F: He just passed by and I was on my own, you know. He just passed by and a few hours later he passed by again and said the X-Rays show you have lung tumours and since then others turned up. That was New York six weeks ago and since then I stayed a few nights in hospital. I might mention a bill of €28,000, but I had some health insurance through my dear friend John, but I sort of knew that I should come back to Ireland and I was absolutely right.

MF: How did you deal with the information?

NO'F: Em, I couldn't deal with it ... I was so shocked I would pay attention to anything except what I had just been told. And it took me a long time to work my way a little bit out of shock.

MF: In terms of what people think about cancer, the shock the terror and the treatment. Did they say to you or did you even ask them at that stage, about eh treatment and your chances and those kinds of questions

NO'F: Well I saw some people in New York and they are not very different from here. The thing about my cancers are they are incurable and that's the central fact about them. There is a great cancer hospital in New York just up the road from my beloved room which I will never see again, but anyway, I might have gone to Sloane Kettering if there had been a chance of a cure, but from the beginning to the end I have been very lucky.

There is no chance of a cure. There's a chance of aggressive treatment that will gain you time, often good time. And I came back to Ireland and did 14 brain radiations and the idea was that I would move on to chemotherapy and I don't doubt that what I have been advised here is at least as good.

The question arrived. I was supposed to start chemotherapy. I was supposed to start 18 weeks of it, six goes of it. After three gos they would know if it was working .

But whether it was the disease or the brain radiation I don't know or care, [it] reduced me to such feelings of impotence and wretchedness and sourness with life... and fear that I decided against it.

MF: Very often you hear of people being told 'oh, you have got to have a positive attitude' and 'a positive attitude is what gets you through' and I have betimes thought that this put a lot of pressure on the person that was told to have a positive attitude. What's your own view on that?

NO'F: Yeah, I was just reading about some best-selling man who says 'Live your dream to the end' and so on and I don't despise anyone who does, but I don't see it that way. Even if I gained time through the chemotherapy it isn't time I want. Because as soon as I knew I was going to die soon, the goodness went out of life.

MF: I think that's a very interesting thing. Because, as I understood it, for you life was very sweet, you had sorted out your American life, you had your life in Ireland, you had your life in universities, then you were going to write. So life was very sweet for you at that point. Why does it not seem to you that if you went through treatment life could not be sweet again?

NO'F: It's the time that I would get at the end of the treatment. I'm not even thinking about the treatment itself. It amazed me, Marian, how quickly life turned black, immediately almost.

For example, I lived somewhere beautiful, but it means nothing to me anymore -- the beauty. For example, twice in my life I have read the whole of Proust. I know it sounds pretentious, but it's not a bit. It's like a huge soap opera. But I tried again the week before last and it was gone, all the magic was gone from it.

And I'm not nice or anything -- I'm not getting nicer. I'm sour and difficult you know. I don't know how my friends and family are putting up with me, but they are, heroically. And that is one of the things you learn.

But, in general, every year since I was 60 me and the sisters and brother and sister-in-law have gone to Italy and sat on a beach. And I thought: 'Well, I will keep that goal', but now I am wondering if I would sit on the beach thinking what? I would be thinking 'God, was I a bit breathless last night? Am I going to choke? Is my right leg swelling and is it hurting?' There's so much you can't know.

You see, the cancer is a very ingenious enemy and when you ask somebody how will I actually die? How do you actually die of cancer ?... I don't get an answer because It could be anything.

It can move from one organ to the other, it can do this that or the other. It's already in my liver, for example. So I don't know how it's going to be. And that overshadows everything. And I don't want six months or a year. It's not worth it .

MF: Do you believe in an afterlife.?

NO'F: No, I do not.

MF: Or a God.

NO'F: Well that's a different matter somehow. I actually don't know how we all get away with our unthikingness. Often last thing at night I walk the dog down the lane and you look up at the sky illuminated by the moon and behind the moon the Milky Way and, you know, you are nothing on the edge of one planet compared to this universe unimaginably vast up there and unimaginably mysterious.

And I have done that for years, looked up at it and given it a wink and thought 'I don't know what's going on' and I still don't know what's going on, but I can't be consoled by mention of God. I can't.

MF: Would you like it?

NO'F: No. Oh no I wouldn't. If I start doing that something really bad is happening to my brain, though I was baptised and I remember my First Communion and I went to Catholic schools and I was in the legion of Mary and I tried to stick to my pledge.

And though I respect and adore the art that arises from the love of God and though nearly everybody I love and respect themselves believe in God, it is meaningless to me, really meaningless.

MF: The reason I asked you is because it is a source of comfort for many people?

NO'F: Well, I wish them every comfort, but it is not even bothering me. I don't even think about it. I have never believed in the Christian version of the individual creator... how could I know far too many Buddhists and atheists and every kind of thing?

Let poor human beings believe what they want, but to me its meaningless. I waited on the radio the other day to hear poor John O'Donoghue knowing that he is very important to many people, but to me it is utterly meaningless to someone it isn't meaningful to.

And yet I want to mention one thing that you might play at the end, particularly for dying people, but I picked up little bits here and there about Ireland, largely at the Merriman Summer School, which is one of the great things in my life, a song I heard a few years ago 'Thois I Lar an Glanna'-- a kind of modern song sung by Albert Fry and other Donegal singers. And the last two lines are two things, asking God up there in the heavens, even though you don't believe in him, to send you back even though you know it can't happen. Those two things sum up where I am now. (Crying)

MF: When you realised the seriousness of the situation what did that do to your concept of your family, your friends, your enemies should you have them, to make all that right.

NO'F: Yes. For example, I lived for years with Nell McCafferty and let's say, 15 years and lets say 12 of those were the greatest fun and I owe so much to them and in fact as far as I am concerned Irish women owe so much to Nell and I was dead lucky to live with her. But then again it ended up not so hot, but now it is my great pleasure to be in e-mail contact with Nell and to thank her (crying).

MF: And other people you might have lost connection with...

NO'F: Well, funny enough, there is at least one person who was very unkind to me and he can stay that way as far as I am concerned. I always find it hard to forgive people who are unkind and I don't forgive them.

My God, my sisters and my brother and my sisters-in-law, I bet you there are loads of people like me get on grand with their family, but it never occurs to them that their family will go to the ends of the Earth for them. I am even embarrassed by all they do for me. What can I do with that goodness of theirs? If I was a religious person I would see it as the spirit in action, but I just see it as inexplicably good.

MF: You decided that in the time you have that you would see or examine what is that gives life quality or gives meaning or significance for you. Tell me the kinds of things you might do and have done.

NO'F: Well I couldn't do anything for the first weeks because I had to get this brain radiation every day. Then they told me I would have three weeks between it and starting the chemo... if I wanted to start the chemo, because they say we offer you the chemo because we think it will help you a great deal and I don't doubt them.

Well, anyway, I thought if I am going to do chemo it is to win time. What do I want to win time for? What is the quality left in life. And then, so, I arranged to go by myself to Paris and I thought 'I'll stay in the best hotel in Paris' and up to a point it worked.

In the morning, in a ridiculous piece of economy, I didn't have their €40 breakfast and I wandered out and I sat in a café and I had a tartine and milky coffee and I thought -- 'Well this is it. I love this'.

MF: Did that work? Did that do what it is you wanted to find out about or experience.

NO'F: Yes it did, once .But I wouldn't want to try it again. I wouldn't dream of it. It was such a miracle that it came together with the right people and in the right weather. A few days later I went to New York and that was overdoing it.

MF: Again, you are supposed to be sick.

NO'F: WelI I am sick, but I am trying to say goodbye. So much has happened and it seems such a waste of creation that with each death all that knowledge dies.

I think there's a wonderful rule of life that means that we do not consider our own mortality. I know we seem to, and remember, 'man thou art but dust', but I don't believe we do. I believe there is an absolute difference between knowing that you are likely to die, let's say within the next year, and not knowing when you are going to die -- an absolute difference.

MF: So people don't move away from you? Or how do people deal with you, I mean friends. Do they crowd you out?

NO'F: Obviously sometimes, in fact often, I pray for them to go away for the very essence of this experience is aloneness and, anyway, it is the steroids keep you awake at night. So it is 2 in the morning or four in the morning and you're walking around and all you know is that whatever it is you are feeling or thinking is yours and nobody else's. And there is nobody else to lay it off on and that aloneness is the centre and the thing that you never know when you are well ...

The two things that keep me from the worst of self-pity are that everyone's done it so that ordinary people are as brave as I could ever be or as less brave as I could ever be.

The second thing that really matters to me is that in my time, which is mostly the 20th century, people have died horribly, billions of people have died horribly, in Auschwitz, in Darfur, or dying of starvation or dying multiply raped in the Congo or dying horribly like that.

I think look how comfortably I am dying, I have friends and family, I am in this wonderful country, I have money, there is nothing much wrong with me except dying.

When I think of how privileged I am. I had two brothers who died of drink and they died miserably and under- privileged and here I am as usual the lucky one in the family (crying).

MF: One of the things that you wrote about and wrote about is that what you thought mattered in life was passion?

NO'F: That seems a bit silly now. What matters now in life is health and reflectiveness. I just shot around. I would like it if I had been a better thinker.

MF: What about the passion?

NO'F: The passion can go and take a running jump at itself, that's what it can take.

MF: And love?

NO'F: Well, love's different, but I always [get the] two mixed up anyway. Well here I am, I am glad I didn't have a child, that's all. One of the reasons why is that since I heard about this I have been thinking about men and women, parents who are trailing around their houses with Methastatic cancer like me, trying to hide it from them, trying to say goodbye, even though they are too tired to move. And it seems to me to die leaving children behind is so bad.

MF: It is natural.

NO'F: I don't know, to me it seems the most terrible thing. I would have been a terrible mother. My mother was a terrible mother and I was very close to her and I drank too much 'til I was 40, which was a waste of my one and only life. The whole family, family life was predicated on drink. We'd meet our father in a pub or our mother in a pub, everything was done through a pub.

Nobody realises until they move outside Ireland just how abnormal Ireland is that way. If I had my life again I wouldn't drink and I, of course, I wouldn't smoke and I would try to think better although where drink would get me I don't know. Its about 16 years since I had a cigarette.

MF: Did it start in the lung?

NO'F: Yes it did. It makes no difference. I remember Charlie Haughey showing me his X-Rays and you could see at the edge of them a big pale grey expanse. That was where he had smoked.

MF: If there are people who have cancer or loved ones who have cancer and passionately believe that the treatments are going to work for them, there is the possibility that this could cast a despair over them.

NO'F: My despair is my own, their hope is their own. Their spirituality is their own. My way of looking at the world is my own. We each end up differently facing this common fate.

I wish everybody out there a miracle cure.

Every single professional will tell you that they cannot say how long it will be... and it is my choice not to go the route of chemotherapy.

Funnily enough I don't care about losing the hair. What I do care about is that sometimes I see people frightened or repulsed and that is why I went and got a wig in which I look like a rather striking but elderly chorus girl.

Now I am beginning to put the auld bald head out there and I still have a few eyebrows, but what do I want them for? I don't care about anything any more. I know everyone says the hair matters, but that is not true. You can put a little cap on or something for the hair. That is irrelevant compared with having to leave the world behind.

MF: You said it wasn't so much you leaving the world as the world leaving you.

NO'F: I thought there would be me and the world, but the world turned its back on me, the world said to me that's enough of you now and what's more we're not going to give you any little treats at the end.

MF: Like...

NO'F: Like, let's say, adoring nature. Music is not quite gone, but I'm afraid it will go if I overdo it. So I'm trying to listen to as little as possible.

One of the reasons I went to New York was to hear live music, which I did the night before last -- a wonderful string quartet, and thanks be to God my heart responded because if I had had to sit there listening to Schubert's quartet Death and the Maiden meaning nothing to me I really think I would have thought I am going to throw myself under the subway train, but it wasn't. I came out elated. There's things left.

I still occasionally like food and above all I like sleep and what I am hoping for, and I don't think this is going to happen, but if I could have this I kinda hoped there was some kind of way of fading away, that you lay on your bed and you were really a nice person and everyone came and said goodbye and wept and you wept and you meant it and you weren't in any pain for discomfort and that you didn't choke and didn't die in a mess of diarrhoea and you just go weaker and they say you might emigrate into some other organ.

Mine is already in my liver and I don't know what that means, but if that means that sometime in the middle of the night on your own as you must be, you know you are just about to go into the dark that's what I want.

(Weeping)

NO'F: It was well worth doing, you are sure it won't give people despair.

MF: Well, just on that point, because you have travelled your journey now in your head and in your heart, and I don't want to give other people despair because people do get cured from cancer, many many people, the majority of people do and I don't know if you can give people advice.

NO'F: No.

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