|Interviewer: Robin Hughes
Recorded: November 9, 2000
This is a transcript of the complete original interview conducted for the Australian Biography project. Each transcript page covers one videotape (approximately 35 minutes). There is also QuickTime video of the full interview available. To play the video, click on the icon in the right hand column. In addition, each question in the transcript is linked to the video. Clicking on a question will play the video from that point. (Help with this feature.) Optionally, you can download the video file for offline viewing (approx. 10MB).
The interview has been left it in its original state so that you can get a sense of how the conversation developed. The repetition of some questions, or a question followed by another question, is often due to the end of a particular tape or some other interruption, and has been indicated at the appropriate place in the text. There has been minimal tidying up of the text so that the flavour of the encounter has been kept.
What was it that made you first realise that something might have been going wrong with your body?
Well, my gums began to bleed and felt pulpy, you know, how that can sometimes happen. But I happened to be at my dentist and he was prodding away and he said, "I don't like the look of this, Inga, it looks systemic". I thought "What's he talking about". I said "Oh" and didn't ask him what he meant, partly because he's an old friend and because I discovered I was embarrassed about indications of illness. Then my nose started to dribble blood and it would get everywhere, it would get on essays I was marking or books I'd borrowed, you know, there'd suddenly be bloody fingerprints on them like some inept villain and I felt tired and I would have these peculiar, quite sudden lapses of energy, so I'd be weak and trembling and not able to, to take further steps. I can date some of them because in October in Swot Vac, I'd gone down to Anglesea, my son was there with Anastasia who was then a heavy baby and I was walking up the beach with her and suddenly I couldn't walk any further. And I had a vision of an octopus with jelly legs, just vanishing into hot sand, I just couldn't - and had to give her to my son, and they strode off and I was left feeling, you know, this really isn't right, something bad is happening. But then I'd be all right. So it was that kind of bewildering shift and I believe in having a bad memory for illness so I'd forget about it...
Why do you believe in that?
Because it's a bore and a nuisance and it might stop you doing something you want to do and if you feel better, why not just go on? So then the symptoms multiplied and I got swollen and very painful feet so I couldn't walk on them, I had to be pushed in a wheelchair and I had red spots marching up my leg and it was going to a whole clinic full of doctors trying one after another, but in fact they always had my notes of course. And for the first time I had the experience that a lot of women have of suddenly turning from a competent being who can report accurately what's going on to a nincompoop because I was informed by this squat, matronly woman, that what I was suffering from was post-menopausal, no pre-menopausal blues and that I ought to age, you know, gracefully and contentedly. And here I am - but also at this point a hugely bloated belly, you know, obviously sick, and this clown who's producing this nonsense. So I gave that clinic rather a hard time but they gave me a worse one because they kept passing me around like an old bouquet of flowers they were trying to get rid of until finally the senior doctor said, "Oh it's gout". And I snapped "Bullshit". And he said, "Well, I'll have a blood test done and we'll verify", and of course it wasn't gout. And he gave up. He said, "I don't know what it is", so having declined over three months I finally got the diagnosis and once I got the diagnosis everything made sense.
How did you get the diagnosis?
I went to a diagnostic physician who are good at these things and after ten minutes, he says, "Well I'll have to run the tests but I'm sure what you've got is an auto-immune hepatitis, and you're difficult to pick because you don't have the dominant symptom which is jaundice". So once I was officially ill and diagnosed and I was in hospital, I was used to dismay years of poor old medical students who'd be brought in under the eye of their senior doctor and would have to diagnose me and of course they wouldn't think of liver disease because I wasn't yellow. I would lie there willing them [laughs], you know, to get it. So then I went to a specialist who was terrific, very direct and he'd in fact discovered this particular disease just a few years before and there was no cure for it, but there was a treatment. But for some reason the treatment didn't take with me, it didn't work. I continued to deteriorate too quickly and then in, I think it must have been about early August, I was suddenly desperately ill. I'd had something that seemed like a flu with a bad cough and then my fever just ran away to ridiculous heights and the diagnostic physician to his great credit, came to the house in the middle of a teeming with rain night, I didn't recognise him at that point, I was so far gone, and put me straight into hospital. And I was in intensive care for a while and I had my first bout of hallucinations and I came out of it wasted, gaunt, too weak, as they say, to lift my head. I couldn't feed myself. I couldn't walk. I was a, a body and at last I'd turned yellow, at last it was clear that my liver was up to something and I was a sorry sight and in a sorry condition. But then they shipped me out to Freemasons and I was in there for two months getting rehabilitated so I could at least totter by the time I came out, and get myself up out of chairs with a bit of help, but I was a sick, sick woman.
Now you just said very casually, I had my first bout of hallucinations. What kind of hallucinations did you have?
There was - it was a ward in the Royal Melbourne which I thought was underground, though it wasn't. It was in fact on the ground floor and it had very peculiar cases in it. My memory is still clouded of that time but for example there was a woman diagonally opposite and in the first place, I'd lost my glasses in the first few minutes of this drama and I didn't get them back for days and days and days, and I thought she had a large moustache, God only knows what she in fact had because I couldn't see. She had gangrene which was terrible, you know, she cried with pain when they'd change the dressings, otherwise she was utterly silent, and there was a crazy woman right next door to me. A spindly old woman who in the daytime talked to you in a frantic urgent whisper which was disquieting but she was clearly crazy so - but who at night was frantically restless and they'd pull up the sides of her cot so they were high and I would watch with the little light they left on in her little bay with the curtains drawn while this spindly form struggled up onto the top of the rails and got herself out and over, and then she'd erupt through my curtains and grab my feet or rattle frantically in the steel drawer at my head. I tell you she was a very scary phenomenon, and I began to have hallucinations and when I did they were very exotic, they were Balinese shadow theatre projected in blood red shadows onto the curtains dividing the beds with the wailing, high Balinese going on with it and the, the figures shaking and dancing. But they were so extravagant they weren't too terrifying because I could sort of see they were connected to the old woman and her shadow, that that had made me get on to that image of flickering, fire lit shadows cast on a screen. And there were also in daylight, too, processions of little blood red turtles and cockroaches that would march in these solemn processions up and down and across, and up and down and across, all the time. I learnt to ignore them. But what really distressed me very much was when my son, older son and his daughter, Anastasia and, who was then about three I guess, absolutely intrepid, absolutely unfazed by my transformation, cried on one visit because she was too little to look after me. She's always been a realist and the baby, Gilly and Fia was suckling over by the window which still didn't tell me that I was not in a subterranean room, even though there was a window. And suddenly hers and the baby's face, were just masked with blood and I looked at Anastasia who was hanging over the, my bed and her face was just blood too, and my son was all right and I was terrified. I was absolutely frantic. But the thing about hallucinations is they're strictly private. You dare not admit them to anyone. I'm not sure why but it's a complete necessity to control any sign that they're having. So I waited for them to leave and then I sent them a message not to bring the children or Thea back in because I didn't know what would happen to them, you know, superstition is hard to avoid when you're in that kind of weakened state. So it was bad. I hated that whole place. It was terrifying the whole time. I've got all sorts of recollections which can't be true but I have them. The things couldn't have happened.
Well, they're probably libellous. There was a Chinese charge nurse at night who, unlike nearly every nurse who were marvellous, was cruel. She was a cruel woman, she'd hurt you. Now perhaps anyone would have hurt me because I was in a pretty reduced state and you lose skin and bone and injections hurt and your veins collapse and you're a mess. But I thought she hurt me deliberately and we had a little contest of wills even though I wasn't exactly in good fighting shape because I'd been told that I had to recover some physical strength, so I had to keep sucking away at Sustagen, you know, these little containers and she wouldn't get me one in the middle of the night when I was wide awake and frantic to do something to assist my condition. So I'd had little wars with her, and I dreamt or believed or thought that she was assembling her night staff and making them sing Chinese marching songs out around the main nurses desk. Now even when I was persuaded that was real, I didn't quite believe it. It seemed a bit exotic, but that's just sort of happened, things that happened with hallucinations. You were badly. Your old reality checks don't really work.
Do you know why you had them?
I assume I had them because livers control an awful lot of processing of, of natural drugs and other drugs in the body and I assume that some of those toxins were on the loose because, you know, loss of memory, loss of vocabulary, loss of wit, is a standard phenomenon in liver disease. It's called encepathology [encephalopathy], or something, it means inflamed brain sickness and it's a direct consequence of the importance of the liver in processing and getting rid of all sorts of toxins. Where the poor old liver is a quarter as big as it should be and is sort of tottering along, those toxins stay in the body and affect the brain. [INTERRUPTION]
Were you in hospital at the beginning with this admission into the subterranean space, or the space that was subterranean in your mind? How did that end? How did that period end...
Well I came out of that acute ward hospital and was sent off to Freemasons for two months and there slowly physically recovered to a sort of viability and also the drugs began to work rather better, but not too brilliantly. The decline continues and the point is you keep sustaining more and more damage. There's an accretion of damage. My, er, my specialist was marvellously direct and I was trying to plan what I could do with myself for the times I was all right, I mean, this seemed crazy. So I said, "Well look, you know, realistically, how long can I plan ahead?" Thinking the answer would be six months or a year or at worst three months, and he looked at me speculatively and said, "Fortnight", and I thought "My goodness me". [laughs] But it's true, there is no way of measuring - odd things grow and I never really understood what they all were but you ran the risk of collapse which would be a crisis and hospitalisation and action. That didn't happen to me. I tottered on, up and down and then I proceeded to get more and more mentally affected... [INTERRUPTION]
And so what was the effect when it began to have this mental effect on you? How did that, how did that manifest itself?
Well you lost words and they were commonplace words. They were words like cup, wardrobe, cupboard, hat and it's rather hard to manage without those words and you'd be stumped trying to think what it could be. It led a quite different - lent a quite different feeling to reality, a very sort of slowed down, problematical sort of reality. In conversations you had to start faking it because in fact you were concentrating like mad and yet you were several moves behind. Your thoughts moved very sluggishly. You forgot names, so again you faked it, you used endearments. I started calling people 'Honey' because I couldn't remember their names. It was - I found it very disquieting and of course what I did was to try to write about it. There's a rather funny passage in 'Tiger's Eye', which I wrote just after I'd come out of this, but when I'd rehearsed it all in my mind, of when I was down to single words, I had nothing to think about. If you're thoughts aren't coherent, you know, your mind is emptied and I'd grab a little single word as it went past and I'd think about this little single word and what sayings might surround a single word and what the single word meant to me. And I'd do little poems out of my single word and I'd play with it, because I knew once I let it go, it would go. So it was a curious time. Sometimes it seemed quite restful because weird words would come yawning and stretching out into the light. I've forgotten them now, but I did write them up at the time and you could make up little stories about them. Just a word like 'extricate' or a word like 'incandescent' which kept me happy for a long time because it was incan-descent when I thought about it and so I'd make up little sentences with I of incan-descent, you know, will do the following things. So there were ways of filling the time with these mad little games but the disquiet was much more attached to social situations and to an awareness that you really could play no part any more in any of your old relationships. You were gone. There were some good consequences. I used to trundle out to see the people at the Liver Transplant Unit who at this point were at least considering my case and I ran into an interesting problem. I have a desire to seem in control of situations and to seem fluent. So I'd in fact feel terrible and be wandery, but I'd go out and the man I had to see was a very challenging, very bright guy, it's not my specialist any more. Now it's the Liver Transplant Unit at the Austin and he had the unfortunate effect of putting me instantly on my mettle. So I would stiffen my spine and I would perform as well as I knew how. And he'd say, "Well I don't think you're in much trouble yet Inga, I think", and I would go off thinking, "Drat, I'm an idiot". But one day at long last I went in and I was really off with the fairies, you know, I couldn't put a sentence together, I couldn't listen to him, I'd just be drifting off [laughs] and that impressed him. I also wrote to him and explained the dynamics of our interactions, because it was funny, when I knew what I was doing, I was showing off instead of letting it be clear I was in a lot of trouble. And another funny thing happened. It's very important to them understandably because it's a long drawn out, difficult, risky procedure and it takes a lot of care of the people around the patient to support them and to make sure they take their medicine and to do all this stuff. And so it was important to him to know whether John supported me or not. Now as you know, John is a philosopher. John thinks it unprincipled and immoral to take other people's decisions for them. So all he would say was, "Whatever Inga decides, I support utterly", which understandably my medicos, not being philosophers, read as unreadiness for me to have it. So I explained - I thought this was what was going on. So I explained it to John and said, "Look, you know, they think you hate the idea so you just nobly say "I will support her", you know. Say, "She's going to drive me crazy unless she gets it".
Say "It's the only thing she wants". Say "She doesn't mind dying". I want it." But he couldn't. So that was a big nuisance but finally after I'd done this away with the fairies routine and clearly couldn't find my way across the street, I was on the list, on the waiting list, or activated as they call it. And naturally I was delighted and excited and I packed my hospital bag and I paid all my bills, and in between my moments of being off with the fairies, and I settled down to wait and then I realised that it was a snare and a delusion because of course with a liver transplant there's a queue of people in desperate need. Anyone who suffers a crisis and this can happen, boom, out of the blue, naturally is at that head of the queue, otherwise they will be dead in 12 hours or whatever. And you are dependent on the terrible problematic of there being, typically, a car crash, not too far away from a major hospital. That someone is brain dead, destined for total physical death, can be sustained on a life support system just long enough to harvest the organs. That they will have checked a box to say I'm ready to be an organ donor in some casual moment. Or that their families who are wrestling with this shocking bereavement, this appalling accident, will hear and respond to a barbarous request. So it's asking a lot. So you wait and it's a very depressing experience because the one thing you do not have is any kind of autonomy. You can decide nothing. You could decide to kill yourself but that's all. You don't have any other alternatives, and I hadn't thought of that till just now. Your doctors will decide if you'll be the next cab off the rank, or your body will decide by collapsing, throwing you into a crisis state and then you'll probably just die, you know, that's what happens to most people, but it may be that you'll be rescued by a transplant. I had what's called a turkey run, which was an experience. The phone went at last. You carry your beeper around with you at first, you know, you think it's going to go at any moment, but of course it never goes, never. I found mine was programmed to Tasmania at one point, I was very depressed, you know. And then the phone went and I was asked to go into the Austin and I went in, and I instantly smelt a rat because there was a deeply jaundiced, very thin man, ahead of me at the radiotherapy, they do x-rays, sorry the x-ray section, with his large wife and his very nice upright country lad son of about 12 and he was being x-rayed and he had a little night bag with him. I heard about these things called turkey runs. What happens is you get a liver coming in which is suitable in all the sort of, the fine tissue tests and the blood groupings and everything else, size, everything, for a particular candidate but to make sure that should that first candidate die, the organ isn't wasted, because they're an utterly precious commodity, there's a second candidate in the queue and I realised I was the second candidate. So I went through all the preparation and then at four o'clock in the morning they said, "Okay, you can go" because he'd survived. We later became friends but it was, it's a very odd experience altogether. The next time I didn't think "My God it's another turkey run", I really didn't think they'd put me second in the queue again, they wouldn't have, I'm sure, and it was the real thing. And I was absolutely exhilarated and joyful. So, and then I remained properly conscious for quite a while after the operation and then I went into hallucinations. They give you a very large bolus of drugs, in the course of the operation they have to. It's a 12 to 16 hour job and, you know, they're doing a profoundly unnatural thing. Everyone commented on the irony of me specialising in Aztecs taking living organs out and then me getting a living organ installed and how puzzled the Aztecs would have been at this bizarre routine.
And more than that also your life depended on the death of somebody else.
Oh yes, indeed. And that's a very, that's a very transforming kind of thing. You have to think your way through that when you're waiting. You know it will depend on a catastrophe, almost certainly happening to a young person. People on the waiting list are always tense on public holidays. Public holidays mean accidents. It's a shocking thing. That's why it's so important, and this is a commercial message, that people talk about the possibility of making their organs available should they die. They've got a good slogan, I like it: 'Don't take your organs to heaven because heaven knows we need them here'. And it's a great slogan, I think, because in fact the body corrupts or is burnt. The body doesn't survive the death for more than a day or two and if organs can be taken, which they are with absolute decorum and care, it does save lives and they're often the lives of children. The transplant patient just before me was little Ben, he was four years old, and he survived.
Do you know where yours came from?
You're not permitted to know that. In some states you're apparently permitted to know if it's male or female but here one is permitted, one only knows that you're in luck and you are permitted, if you want to, to write a letter to the donor family. They won't know who you are, you don't betray, well I didn't betray my age or my sex or my illness or anything else because I thought that if I lost a son under those sorts of circumstances, I did decide that I would say yes to the organ transplant request but I would want to believe that it was going to a young person. I wouldn't want to think it was going to an old lady.
Did you think you didn't deserve this?
Yeah, I did. Now what cheers you up about that is that you see the marvellously random and motley collection of people who've got livers and, you know, we are not chosen and selected for our beauty or our intellect or anything else. We're just sick people who got lucky. So that obstinate, democratic, egalitarianism of the transplant units, I think is brilliant, I love it. But of course you don't deserve it. It's a ridiculous piece of luck.
But it didn't stop you from taking it?
I wanted a liver transplant. I didn't want to die slowly, messily, painfully and tediously if something could be done about it. But I hope it's true that if I'd been told you can it or Ben can have it, I'd have said, "Give it to Ben". But luckily the patients are not in any, in no position to make decisions. You're a body and the medicos decide on their own criteria, and sometimes, I don't know if this is true but it seems to me possible, that a criterion might sometimes be your scientific interest. You know, can we pull it off with someone of her age? Possibly.
Given that you received this liver aged - how old were you?
It was in '94 so I was in my 59th year. Was I?
Yes, you were born in 1934, you must have been virtually 60. And, and you, and you felt that you were old to be having...
I was old, I was the eldest patient they'd transplanted. I don't mean old in the way I felt, I mean old in the gamble which is liver transplanting.
[end of tape]