6th Anniversary of My Transplant:
Time for Hallucinatory Stories
Today, February 18th, is the 6th Anniversary of my Liver Transplant. I remain full of daily gratitude to my donor – and her family. I have had six years of extra life so far! It is a true scientific and human miracle. Any point in history before thirty years ago, I would have been undeniably dead a long time ago. I dwell in gratitude.
To mark the anniversary of my liver transplant, which saved my life, I am placing this early piece of writing on my site . I wrote quite a lot of this within a few weeks of arriving home after the surgery. It can be read as being quite shocking!
Illness and Hallucinatory Stories
Psychotic hallucinations after intensive surgery:
an auto-ethnographical story
I have recently been reading Oliver Sachs book on Hallucinations. He writes:
“I think of this book, then, as a sort of natural history or anthology of hallucinations, describing the experiences and impact of hallucinations on those who have them, for the power of hallucinations is only to be understood from first-person accounts.”
It reminded me of my own extreme hallucinations. After my transplant surgery in February 2007, I landed in intensive care for 4 or so days. What happened there and for a few days afterwards was very strange indeed and very frightening. I imagined a string of very odd happenings. At the time they were very, very real: retrospectively I can only say they were paranoid hallucinations of an extreme kind.
I have since learned that this is not an uncommon experience.
Some while back I read the following report of what seems now to be called Postoperative Delirium. Here is the medical prognosis:
“ The word “delirium” derives from the Latin delirare, which means “to be out of one’s furrow.” Delirium is an acute cerebral state characterized by disturbed consciousness and cognitive dysfunction occurring in the setting of a physiological derangement caused by a medical disorder. Delirium is common, affecting between 15% and 60% of medical and surgical inpatients and more than 2 million elderly patients each year in the United States . It is correlated with increased morbidity and mortality, prolonged hospital stays, and cognitive deterioration (. The prevalence of delirium in postoperative patients ranges from 10% to 51%. Cardiac surgery in general poses an even greater risk. The incidence of delirium in elderly postoperative patients is 15% to 53% and as high as 80% in elderly patients who require intensive care. One-quarter of delirious elderly patients die within 6 months
This could perhaps be me? Nobody told me about this, or even gave me the name. Perhaps, thankfully, I remained in blissful ignorance as the delusions led me to create a very painful fictional world that I believed to be very real indeed.
As soon as I got home from the hospital and feeling a bit better, I spent a little time trying to write down a little of my hallucinations and this is what follows below. This is fairly raw. About six months later, I tried to make some little sense of it and I have placed some of this reflection in a closing section at the end. I continue mulling it over to this day….
What follows then is a short extract from my story – written about a month after I left the hospital.Do be clear that this is the account of a hallucination – which was a real enough eperience. It was not, however, ‘reality’.
Sightings from another world….
My first recollection on coming out of the ten hour surgery was of the bombed out hospital (whether because of terrorism or not remained unclear to me). There were flames everywhere, ruined buildings, screaming everywhere, and people were moving around with huge scars, burning before my eyes, stumbling in flames, zombie like. Smoke was everywhere and it was hard to see much… was I dead in the midst of all this chaos.. Dead bodies were everywhere?
Saved! I am in the ward with a large DJ platform from which music could be played. Am I alive? I see wires and bottles everywhere attached to my body. Is this being a cyborg – what of my body was me? My mouth and my throat seem plugged, and I couldn’t move or speak. I was told to press a button if I was in pain – and I kept pressing, and pressing, and pressing: until they took it away from me.
I heard strange voices and saw terrible visions. There was an Irish woman screaming about the poor, desperately crying to ‘let me die’ . Many other odd noises seemed to come from the machines that surrounded me: drips, beepers, mini-alarms – all uniting in a bizarre kind of minimalist symphony. There was an angry singer who chanted about being mad… it was a right din. But just as I had heard all this, it seemed to repeat itself, exactly the same, all over again. And again. And again. It was like a soundtrack being played to drive me mad! I asked the nurse if she heard it. And why was it being repeated over and over again? If this was music I said, it did not seem appropriate for an intensive care unit. Couldn’t something jollier be played? She was very cautious in her reply. As I heard it all again, I asked her again – and probed if this was a CD playing. Then she said ‘yes, that it was a CD’. Well, I asked, why repeat the same CD over and over again? Why place a CD that was so gloomy in the Intensive Care Unit? Come to that, why play music at all? Could they please stop it?
The nurse came back and told me she had made a formal complaint. She was a wonderful Asian nurse, but other nurses slowly came to her and abused her and attacked her for making the complaint. Meanwhile the ‘music’ continued. Young doctors gathered around my bed and seemed to say that I should be more tolerant and that there was nothing wrong with this choice of music! More senior doctors came along and moved them over to the DJ turntable – where it was revealed that this disc had been repeatedly played since the previous Christmas! The young doctors were told to remove it. They listened to each track with some attentiveness to remove the offending tunes. To me they were all offending. The problems now was that most of the nurses and the doctors saw me as a trouble maker. I did not speak much more about it. But strange looks, run away comments, and avoidance is what I found. Trouble is, as I lay there worrying about it, I recalled a colleague of mine at my university who once got his MA students (in a mental health care course) to make up such a disc /tape for assessment. Could he be involved? Was it all a mad plot?
At the same time – but now I cannot see how they linked, though at the time they seemed to, other people all around seemed to be looking at me with suspicion. It seemed I was a posh, rich conservative Professor who made all his money off the backs of queer/gay people. The student gay and lesbian union at the Hospital (it was a teaching hospital) wanted me thrown off the campus, and were picketing and leafleting the wards and the gates. Apparently I only got my liver transplant because I was friendly with the rich, powerful and elite governing body of the university hospital. This was all so untrue. I heard various denunciations (my partner and I of 30 years were comfy, old homosexuals – light years from the radical plights of young isolated queers), and all my earlier research and writing (in books and campaigns) was seen as merely reformist, liberal or self seeking. I was now an object of amusement and scorn.
Indeed, my exploitation of the NHS had become a public issue- on radio and in the press. I heard the radio interviews and they made me quite paranoid. They wanted to interview me but I said to myself that I would only do this if I had the accusations on paper and in my hand. My next few days were haunted by these events, as I was gradually moved away into the Transplant Care ward.
As I lay in my bed being tormented by these ideas, they slowly went away. They came on a Wednesday and Thursday when I was in the intensive care unit, and had more or less gone by the following Monday: they lasted around five days. I kept looking for signs of this turbulence – but couldn’t find any. Did any of this really happen? I asked myself. After all, for a few days I seemed to have turned the whole hospital and indeed the country upside down. Now it all seemed gone. Strange.
It’s strange too how my new hi tech home looks in most respects just like a hospital room. We go (my wife and I???) to a nearby shopping centre – but we travel in the room itself, which must be mobile; so we just travel in the room! She (my wife- where on earth did I acquire a wife from?) goes shopping but I just lie there in the bed. A bit passively. And as I look through the window, the world outside does not look that hi tech or flash. Indeed it looks like crumbling brick walls. I thought this was a post modern shopping centre, but it turns out to look a bit like a crumbling old bus park in Turnpike Lane, in North London, not far from where I was brought up. Then I realised: I was indeed lying there in a future world, looking out on to the world it was replacing. The old world was crumbling out there: we were safe in the new ultra hi tech world of machines and hi tech. My wife had gone to a hi-tech supermarket to get our capsuled food provisions, and we had travelled there in our space house! That other world – this Turnpike Lane – may be out there crumbling; but it was not for us. That was not my world. But in this world, my bed seemed to be my space. I could not seem to get out of it. Instead, people kept coming to me. Oddly they all seemed to be dressed in white nursing style uniforms. And it was bit like a carnival parade in a super science fiction story. One came in with a machine and stuck things in my ears, wrapped my arm up and pumped away. What was going on here? Notes were taken. Another came in and asked me very odd questions: like who I was and where I was. I told her I was just outside of North London in Turnpike Lane. I couldn’t tell her everything – I kept the travelling room to myself. I had to talk a little tongue in cheek or she might have thought me a bit odd. Come to think of it, it was all a bit odd really? Was she going mad, asking me these silly questions. Another tall man – in a blue uniform- carried a big bag, and asked me a lot more very odd questions. Often I had not idea what some of their questions had meant. And then, oh dear, he gave me a little injection. Something was up. Why was he drugging me? And then another man in a hospital looking outfit came in and took blood from me. People were coming and going; prodding and poking; injecting me and strapping me; it was a right carnival in this shopping centre. What was going on? I wanted to return home- and kept trying to ring a bell. People came. People went. I seemed stuck here. Where was my wife? But who was my wife? Why was she so long getting the provisions? Gradually I felt I had been trapped here. I was on exhibition. How could I get out and control my life again? Who were all these people? Could I get my room to move away again? Finally, Everard appeared. Ah. I was in a hospital and I had just had surgery. I was in South London. Oh. So what had I been thinking about?
After Everard left, the room started to move around again snake like- and this time the whole ward was gliding around the villages of the Essex countryside (where I had lived). It had settled into a very pretty Tudor style village, locking itself into a village hotel as an underground wing! Here I learned of major intrigues. The entire panel of the Radio Programme The Moral Maze were organising their own Christmas party edition of the programme from within the village. They were all terribly posh, and they all seemed to be residents of this picturesque little village. They all behaved in a terribly ostentatious and pretentious manner – Michael Portillo, Melanie Phillips and others. I had been listening to their views on the radio, just before I had gone to sleep- and now here they all were poncing around about how we should all live our lives. And then I noticed the cameras, and the people from the BBC. It was all being filmed; The Christmas edition was a celebration of traditional family values in a traditional English countryside. Or so I initially thought. But bit by bit I saw it was all only a mask, a front for a major elaborately decadent orgy. All these posh people had a front stage room for the TV folk and here they behaved as right and proper as they should, whilst talking about all sorts of moral issues and how to live the good life. But a few steps away from the cameras, they were all fucking each other silly! They had all become grotesques- Father Christmas look alikes engaging in fornications of every kind, even with the children (who had turned into little monsters). The good news, for me, was that slowly some of the cameramen started to realise what was happening, and some even wanted to join in. I watched from my mobile room. And then a huge fire started somehow. The fire brigade was rushing through the winding lanes of this small village…….. everything seemed to be on fire….
That night, the French nurse came to my bedside and asked me if I would like to sleep with her brother who was in the hospital over from France and had nowhere to stay. He was a hunchback with terrible breathing problems, but he would comfort me in my hour of need. I panicked, and rang the bell. I kept saying I wanted to be left alone. The room moved again – and now we were at a Welsh (or Scottish?) bay staying in a wonderful hotel in a small village. A cousin of mine (who I had not seen in many years and who not at all close) owned this hotel, but it had not been doing good business. I made a plan with him to help out: to organise conferences for him. I would get some of my friends to put some money into the hotel. All would be well. But then I looked out of the window and out there in the sea I saw lot of people drowning. I learned quickly that the village had been the scene of many a horrible murder in past times and locals would not come near to the hotel… all was not well.
And so: many strange things happened to me after my surgery. About a week after the surgery, I could begin to see them as estranging….
Re-viewing the accounts
In this re-view, I do not plan to use any theoretical baggage or specific models- except those that have inevitably influenced my life tacitly. You should perhaps know that I am a humanistic sociologist by training and inclination, and this is bound to shape how I view the world. But I am not here trying to make a theoretical point – though I may well try to do so elsewhere. I am certainly not a Freudian – though writing this account has brought me perilously close to writing a paper in the future called ‘Making my peace with Freud’. And, at this stage, I have read absolutely nothing (that I can remember anyway) on hallucinations. I shall see where this takes me.
Just what do I make of all this now, six months later and with some time to reflect? To start with I would say that this was the most worrying and disturbing time that I experienced from the whole illness experience. I think this is because it is the only time I truly felt in danger, surrounded by fear, unhappy and out of control. My illness generally had not been a bad time: serious as I knew it was, I had kept cheerful, felt loved, made my peace with possible death and came to terms with whatever life I had and was to have. Contrary to all expectations, being seriously ill was not such a bad time. But the hallucinations – although I did not know that they were this at the time of course, for me it was stark reality- were another matter.
Experientially, I was under siege. It only lasted for about five or six days- short in the grand scheme of things. But it was a time when I hardly knew where I was or what I was. Hospitals had rooms that could become detached and move around the world. One day I was in the local countryside, and another outside a garage and tube station at Turnpike Lane, London. Strange, detachable, snake like hospital rooms were weaving their way around the world. Doctors and nurses could not be trusted: they hated me – except for a few kind ones, who themselves were being persecuted by others for being nice to me! People were doing all kinds of strange things to me. Indeed overall they seemed to be trying to make me lose my mind. They were driving me mad by playing strange music, drawing horrendous pictures on the walls, forcing me on to unbearable machines, constantly drugging me up, and watching me all the time. Just watching. Never not there. And my body- who is this I am? More like a machine – all these wires and tubes blocking my every orifice, making me immobile, trapped and wired and constrained. People moving around in the ghostly distance. People in nearby beds plotting against me, saying hateful things. Younger doctors – knowing I was gay, or old, or something- seeming to sneer at me (once, one more senior seeming doctor put them in their place, thankfully). Nurses being nasty to me and my nurse- who was the wonderful saviour in the midst of all this. Calm, peaceful, totally caring, Thai I think. An angel of mercy. She seemed devoted to me and as a result she would have other nurses coming to her and telling her that she would be sacked if she looked after me too well. I have often wondered what happened to her? Was she sacked? I think not, but it was a fear I had then.
Oh dear. To lie there, experience all this, and be incapable of doing anything. People would visit from outside – my partner, dear Everard; my brother and sister in law; a student; some friends- but all a bit misty. They seemed to bring something good with them. They brought my old cheerful being back. But in the main, this was the darkest of times.
So how can I explain the more specific contents of my hallucinations – always remembering that for me they were reality, the paramount fact I think of hallucination.
The Apocalypse Hospital
It is not for me very hard to see how this imagery came about. Like most of the hallucinations – all that I can recall- they seem to be firmly grounded in a reality that then gets inappropriately played with. To find myself in the middle of a battle ground – blood, death and destruction everywhere – is not that surprising in a world which is full of such crises. Iraq of course; but I have some (much) awareness that many countries across the world are engaged in civil war and mass genocides. The world is indeed apocalyptic. Most of the time, we conduct our daily lives ignoring this – it is just too much to take. Indeed a friend and close mentor has written a telling book about all of this which has been influential in my life (Stan Cohen’s States of Denial). But it also made sense in a much more day-today sense. I watch some T.V. when at home, and certainly whilst I was ill my favourite genre was the hospital soap. Indeed the night before I came into the hospital, I had been watching one. And in many of these soaps- certainly in ER and …- the hospital had been through a major disaster: bombing, fire, terrorism. I knew it happened in hospitals (my actual real doctor in the hospital denied this – but then he never watched these soaps, it turned out).
It does not seem hard to explain this opening imagery. I was in a world bounded by global and local events of horror. We live symbolically in this world and it came to be the backdrop of my hallucinations. So full of blood, death and fear as they were.
The Elitist, Rich and Conservative Homosexual
Again, this is grounded in a reality. Although in this case it is a reality that is then a direct inversion of my life. The hallucinations seem to suggest that these may be the inner fears I have of the kind of person I really do not want to be. Here I become what I am not: others see me for what I really am, which is what I most fear I might be- but am surely not. Here my enemies become queer radical students, and students in general. I am cast in the role of a rich, conservative who made his money on the backs of down trodden gays through writing about them. In fact I have done nothing for the gay cause, and now just live in the country side in a large and expensive house with my equally conservative partner. Probably closeted, too. And I had friends in high places who could get me to the top of the waiting list at King’s very easily. This was why people were so upset by my presence- I had cheated my way to the top. Here I was exploiting others – gays and sick people. I was being accused of the very thing that I would most dread doing in ‘real’ life. Students were picketing outside the gates of the hospital and calling general meetings about me; people were digging around my past and finding my books – even saying that I was once a radical, but then forsook my causes. Doctors seemed to be extra cautious of me. The Intensive Care Unit wanted to get rid of me as soon as possible because my local notoriety was bringing problems to the ward and the care of others. I was a big problem. Side by side with me being a thoroughly nasty person, I also get momentary glimpses of myself as a complete egocentric – all the focus was on me, me, me.
The elements of all this hallucination were borrowed from reality. What I did with the elements was entirely my own little creation. I really like to think that they are not me. I have never been wealthy; I am politically critical and maybe radical with strong leftish leanings; I abhor pomp and ceremony; and I have been out and positive as a gay for over forty years. I even like to think, on a good day, that some of my writing has had a little influence for the good.
But then why should I think all these things after surgery. Why should they suddenly appear in this hallucination? I clearly worry about all this somewhere deep down- it is just what I do not want to be. I had become the very person I dreaded being all my life. It was horrendous. It was not me. But it was the person everyone seemed to think I was. So why should this hallucination erupt at this time? The disintegration of my body was being matched by the disintegration of my being.
The ward in a shopping centre
The mobile room and all the doctor like movements is the easiest to grasp. I had become a cyborg, and whilst I did not realise that I was ill in hospital, all the people around me who were doing there various tasks came to be a science fiction pageant. I was in a science fiction dream. And in the modern hospital, this is hardly surprising. Everything about it reeks of a kind of science fiction world – gadgets abound everywhere, and people are always fidgeting with machines and pills, dressing in odd costumes and the like….
More to come……… and click on: Transplant Story
Ken, I, too had hallucinations post liver transplant. I was led to believe by the transplant team that it was a normal post transplant reaction to the extreme level of medications in my system — probably mostly due to corticosteroids.
I do not recall the extreme paranoid hallucinations that you had, but perhaps that was due to the fact that I was in a coma for about 5 days post surgery. (I had had a bleed or two that sent me back to the OR before I even woke up from the first surgery.) Most of my difficulty was trying to determine, with the help of my nurse/transplant coordinator, which things troubling me were real and which were hallucinations. Most were hallucinations, but my hearing did become acutely sensitive. I relaly did hear some troubling things that ended up in the reprimand of a staff member. That conversation took place, evidently, in the hallway parallel to the one my room was on. How the heck did I hear that.
Most of my hallucinations were relatively pleasant. For example, my room post ICU had wallpaper trim around the top of the walls. As I listened to music the design in the trim ‘danced’ to the beat. I did, however, become convinced that the nurses had gone on strike. So much so that I insisted my husband purchase the local paper for confirmation. I had imagined it, probably because of my frustration at times when there was a slow response to my buzzing for assistance. But then again I might have heard some conversations that led me to believe there was unrest among the ‘troops’ — within a year the nurses did strike!
I am happy to report that I am 3 years post transplant and anxiously awaiting a real cure for HepC. So far my new liver is in excellent condition, but the prognosis was for 3-5 years before needing another transplant without a cure. I could go through the experience again if necessary, but I am hoping against hope that I won’t have to!!
Thanks Sue so much for writing and I do hope things go well for you. My hallucination story was something I had to share, as I know it is very common; yet not spoken about very much. For me, it was one of the main parts of my experience; just as writing about it all has been for me a great help in ‘getting over it’. Thanks for being in touch.