Altered life: illness as disruption and uncertainty


It is  seven years since I had my liver transplant – an act of skill and love that that saved my life in February 2007.

I stand in amazement and thankfulness everyday at the miracle of this. I have already had seven years of life that previous generations throughout history would simply not have been able to have.

Shortly after my ‘recovery’ I spent time writing the tale of my illness. Today, to celebrate the 7th anniversary, I am posting one small extract from this larger writing: I write here about the day to day experience of being ill.


Altered life: illness as disruption and uncertainty

My initial experience of illness was as a series of disconnected shocks, and my first instinct was to bring it under control by turning it into a narrative…. Stories are anti-bodies against illness and pain

Anatole Broyard  Intoxicated by my illness pxviii

Before my transplant in 2007, I had spent the first sixty years of my life being in good health. I had only seriously encountered doctors twice in my life before. The first, in 1994, happened when I had a major unstoppable nose bleed and was rushed to hospital. I was head of a large university sociology department at the time; took my work seriously; and was under extreme stress. I had to stay overnight and take a month off work. The other time was in my late teens in the 1960’s. I had told my working class parents that I was gay, and they- being the loving but uninformed parents that they were – arranged an appointment for me to see the doctor. We lived in Wood Green, London – and the doctor in turn passed me on to the mental health folk at the local hospital. Colney Hatch was the local psychiatric hospital – madhouse we kids called it – and I went there first! They took my case history and gave me various medical tests – I recall a brain scan at the Maudsley, and a long chat with a kindly psychiatrist about fetishism and my parents’ sexuality. Luckily, this was 1966; I was a sociology undergraduate; the homosexual laws were about to change; and for reasons – I know not why- I think I answered my questions to their liking. When they asked me if was happy to be gay I said ‘Yes’. So they could do nothing for me, they said. And I was discharged: they left me alone. A lucky day, indeed.  But it left me with thoughts about the fragility of psychiatry. One step wrong and I might have been rendered sick and an object of therapy for life.

And that is my ‘serious’ health record up to 2004. Pretty lucky, I guess. Of course I had the usual colds (though not that many) – but I can’t remember taking many days off work. I did my Ph.D. when in my early twenties; got a good job by the time I was 23; and became a lecturer – and ultimately Professor – at the University of Essex in 1975. For thirty years I busied myself in a happy working life and a loving home life with my dear partner Everard (we had a civil partnership in 2006). We lived in a small village community where gayness was not a big issue and where we had many friends- many of whom we drank with regularly in the local pubs. We travelled quite a bit. And although deeply aware of man’s inhumanities to man across the globe, I personally had a fortunate and even charmed life. Misery was not my own business.  I love music and dance; have no religious beliefs (and indeed see it as frequently being the cause of much of the world’s long historical discriminations, exploitations and suffering); and – of course- I love the world of ideas. I had nothing much to grumble about.

But then, serious illness hit me from nowhere. As it must many –if not most- people. I am not sure if it is harder or easier to be ill when at 60 you confront serious illness for the first time. I had no resources or experiences to handle much of it: it was all new. But at the same time, I did not have a former life that had been weakened by the frailty of the body. When I was diagnosed with ‘end stage alcohol linked cirrhosis of the liver’, I knew it was pretty serious.  The very term ‘end stage’ sort of tells you it is not good news! But, three years on – in 2008- I got over it. Indeed I have spent the past few months in a state of marvel and elation at having got my life back. I have been very seriously ill – at death’s door- but I have gotten over it. I feel that I have been given a major second chance. I can hardly believe all those months -when I was so ill that it was inconceivable I would return to a normal life-actually happened. But now I have– for the moment at least- returned to an oddly supernormal life (and therefore not normal at all). I now have a life that seems richer and fuller and more positive than I had known before (and I certainly had a good life before). I found myself hardly being able to grasp what had happened. I even started to doubt whether indeed I had been ill at all. Was it all a kind of a dream?

Stumbling into a new and uncertain world

All life is uncertain. There is a fashion amongst some social scientists to say that the contemporary world is especially risky and uncertain; but I am not wholly convinced. Today we apparently are in a risk society and we suffer from Unsichereit. But I think that in past times, life was pretty wobbly and life from day to day was hardly guaranteed. Indeed, life was probably pretty brutish, often nasty and nearly always short. All life is uncertain at all times. That is something most human beings learn pretty soon.

But very serious illness brings its own very special kinds of uncertainties. Once my ‘illness’ was identified in Santa Barbara, I fairly soon had a clear idea that my life as it was lived would never ever be quite the same again. It would become – and indeed was – seriously transformed. At least for a long while. Most writers on illness have sensed that it brings with it a radical reorganisation of time and life : John Donne wrote famously in 1624 that :‘daies and nights, so long, as that Nature her selfe shall seeme to be perverted, and to have put the longest day and the longest night, which should be six moneths asunder, into one naturall, unaturall day’ (Donne, 1941:31)

The bluntest of these changes, transformations, or disruptions came from my work: since I got tired very easily, had lost all energy, was often very sick and frequently lost my memory and could not think clearly, I was hardly fit for my work as a university lecturer. Sick leave led to early retirement, which in turn meant adjusting to a lower income (but at least I had one. Not so for those on unstable and low incomes). Significant too was the shift in my sense of time: I entered a new set of routines for each day. Sleep became more common; days turned into nights and nights became days.  Much more time was spent in the bathroom; and indeed if I went out of the house much time was spent making sure I was near a bathroom. Food lost any social aspect and became more a limited necessary function. Being with other people exhausted me and slowly I became unconfident of my social skills. Some old friends just seemed to vanish. All my daily routines had to be reworked- and reworked again with each phase of the illness: there were adjustments to hospitals, to doctors, to friends, to walking, to going out of the house, to being mildly ill and being very badly ill. It is a well known cliché but it is so true: I lived with good days and bad days (the title of an important sociological study by Kathy Charmaz). And more than anything it shifted my sense of consciousness and being in the world. It is this which I want to try and ponder next.

Illness as a transformed everyday life world: living in a different key

I tried for some time to find a language to capture something about my illness that has persistently eluded me. Gradually, I think I might have found it. It is the language of phenomenology and existentialism, shorn of much of its philosophical pretension and artifice (which is pretty massive). I take phenomenology at base to mean an understanding derived from the experience and consciousness that we have of the world. At its best it maps out the ways we experience the world we live in, and maybe- if the philosophers are very good at their work, to show how we do this. I have over the years read my Schutz, Husserl, Heidegger, Merleau-Ponty and Sartre: but I have found Simone de Beauvoir to be much kinder in her language and in the examples she brings to bear on it all. But none of this will matter here.  I do not intend here to get involved with the niceties of these philosophical worlds and leave that to others. What the idea brings to me is a sense of the mundane, everyday nature of my illness experience. It was simultaneously a world so very banal and ordinary and yet a world that was so radically different and at odds with the ways in which I experienced it when I was not ill. Being seriously ill shifted the phenomenal world I lived in. My life came to be lived in a different key. It had different shades, textures, meanings, experiences. It was not the old world I had lived in most of my life. And just as it came, so it went. As I got better, the old phenomenolgical worlds – a bit modified- returned.

I can start by saying that everything in my illness world changed, at least a little and often a lot. It was usually not exceptional or dramatic: it was myriad of minor things. But everything took on a different hue, a shifting texture, another feeling. My worlds of movement, clothing, hair, drinking, eating, sleeping, washing, talking, thinking, and feeling – all moved into a different key. The people I knew took on different characteristics. Places became different. Whoever I was before, I was not now. I was a new and changing body. I was a new world of feeling. My consciousness had shifted.

I can make a clear divide between the first major year of my illness when I was ‘still trying to do things’, and the later year when I was ‘waiting for the transplant’. In the first year, I did try to do things. Although on sick leave, I would go in to work on odd occasions – a Graduate Conference, the odd seminar, an occasional PhD student. I went to a family celebration. I would still try and do a little shopping sometimes. And I went to Santa Barbara for Christmas – and, though with the help of a lot of rest, some very dear friends, and using all our reward miles on a first class flight – we had a wonderful two weeks. I took friends and family to a show to celebrate (something or other!). We still entertained a little – and got entertained. But a lot of this was a bit precarious. For everything that I could do, there was a lot that had to be cancelled, postponed or refused. I was invited to speak in Taiwan, travel to Argentina, join a panel on European Human Rights, and so forth: all had to be turned down. Several of my favourite musicals were booked – and then others had to go in my place. (An art exhibition- on Hogarth- came and went during my transplant period’).  So the social round is disrupted but at the same time there is an attempt to keep it going. I saw Guys and Dolls, but didn’t see Mack and Mable.

But once I was placed on the transplant list, there was a decided shift in pace.

Work changes. Most of my life, I suppose I have been a bit of a workaholic- I prefer to say that I have always been lucky enough to really enjoy my work. Illness meant my formal duties at the university had stopped as I eased my way into early, sick linked retirement. But I did have other work commitments – a textbook which needed regular revision, a journal to edit- which I kept on doing. They were useful for me in keeping alive the sense that I really was still doing something. I could not in fact do much. I did bits on good days, and I had a wonderful assistant. She would visit weekly and over long chats, a little work might be done. I learned again that things usually keep going because of the wonderful people behind the scenes of life that hold it all together.

I tried to read and even ‘to work a little’: but it was much harder than usual. I could do these things on really good days (but these days became less and less as I moved towards the surgery). I have always been a reader and I would guess that I have some several thousand books at home and work. Quite a library to draw upon – and that with being willing to send me (at a price) any book I wanted, I was not short of things to read (In hospital, that was a bit different). The trouble is reading requires concentration and energy, and these were in short supply. Ten minutes of reading and I could no longer concentrate. Since I have a butterfly mind, this does not matter too much. I could skip from book to book as I pleased. Still this was not a time for a deep reading.

I learned that keeping at some kind of work – however poorly- was good for my spirits. Oddly the major shock of retirement did not really hit me during this period (that came much later after the surgery). I had never planned to retire this early – never, ever thought of it. I loved my work too much. But now, suddenly and with no plans I had to retire – I was too ill to work properly. But I had no plans ahead, full stop. My life may indeed be coming to an end. Retirement was the least of my worries.

Resting changes. Good rest is an absolutely necessary feature of illness. If I used too much energy and did not rest enough, the illness would hit me hard very quickly. In the beginning I learned this the practical way- activity brings illness. I knew when I had to rest, and planned my day accordingly. A lot of little dozes punctuated the day, but the main rest came during the afternoon. I would start listening to a musical, doze off and wake up several hours later. This became a central feature of many days.

Everard would try to get me ‘out’, and on a good day I was also game. We live in an area near to beaches and countryside, and I started to appreciate – much more than I ever had during my thirty years living in this place- just what a lovely area it was. Slow careful beach strolls; beautiful little countryside churches and villages; drives through the flat lanes of Essex.

Thoughts change. The most critical thing of all was thinking; and being ill – whether at home, in a hospital bed, in a waiting room – leaves you endless hours and hours rolling by on your own with your thoughts. I suppose it might be possible to let this time just drift away. But for many people, like me I suppose, this is also a major time to think about many things. Some may be small and practical, and many will be to do with the disease itself (where is the bathroom, are my pills nearby, if I move will it hurt). But serious illness also brings with it serious view of life – to put it bluntly: this is the time to think about the meaning of life, and death. Very often serious illness takes you right up to this edge: at any point you may not be here at all. So just what is it all about?  For me most of this thought was unspoken. But quietly over many hours I pondered what would happen when I die (since for me there is no after life, this became quite clear: that would be it), and as a link – just how should a life be lived? Did I indeed lead the life I should have? I don’t think I had seriously revisited such questions since my teenage years of mild existential angst; or since the death of my father in 1978. At that time I had read several very important books by Ernest Becker, The Denial of Death and Escape from Evil, which had – sort of – put death into its place for me. He had put the insignificance of all our little human lives into their proper place; told me of my fear of death and what I might be doing to transcend this (building hero systems seems to have been his answer if I recall it right) and he was implicitly critical of this.

Never mind. It was to things like this that my mind roamed. It was therapeutic and helpful. Shit happens. Life is for living. Get on with it. Everyday matters. Make the world a better place. Death is the end. Family, friends and love matter most. Make the most of it. Forgetting all the books and all the philosophers, I came to a rather simple and basic understanding of my life and death. Now that I am alive and living and seemingly quite well, I am glad I used this time to reflect. I felt I came to terms with death and life in a very funny sort of way. Whether I am prepared forever – or for my next death bed scene- I do not know, but I have certainly developed a curious interest in those silly little books of platitudinous and trite wisdoms of the ages ( the sort you often see at the sales counter in book shops- The Little Book of Calm, ‘Wise thoughts’ and the like). Who except the philosophers needs Plato and Aristotle when their wisdoms have been so distilled? (When I left the hospital after my surgery, I bought thirty such books and gave them to the nurses!)

Clothes change. What I wore started to change. Well of course this is so in hospital- they make you wear those ghastly surgical style gowns in those dreadful hospital colours (I had thought of buying myself my own personal one, maybe in some cool pink colour, but it did seem a bit flash!). And as I progressed, I found myself living in a world of pyjamas and dressing gowns (prior to this, for some forty years, I had always slept completely nude!). But it also shapes everyday life. I felt the cold – it comes with the illness. So I took to wearing corduroy and more cardigans and sweaters than I used to; and T shirts added another layer. I could not wear T shirts for much of my adult life – they seemed to accentuate my pot belly; but now I had lost this belly, and T shirts seemed very comfortable. I had for a number of years worn black – a trendy youthful shade for older people that well covered my fatness (or so I fooled myself). But now I found ‘blackness’ pulled me down- and I was better off in pinks and whites and bright blues. They lifted me. I also tried yellow – but that seemed to accentuate the jaundice! The very things I draped over my body changed in illness.

Eating and drinking changes. Well, obviously again, drink patterns had to change – and they did, dramatically. All that drinking, and the worlds of pubs, eating out and parties, came to an abrupt end. And the foods I could eat were limited- I became a salt bore as conversations on salt abounded around meals. We baked salt free bread and filled the kitchen with new smells. Endless foods – pates, crisps, instant foods, cheese – oh how I missed cheese- were cancelled from the kitchen. Soft drinks became experiments; and for all their well publicised faults, diet Pepsi and Coke became new friends! Diet tonic with lots of ice and lemon were so lovely too (though maybe too dangerously close to a nice gin and tonic?) And I started to make my own home made lemonade. In hospital, the world of food takes on yet another grain. The people who bring it around on the trollies are wonderful and are always ready for a smile and a chat. But the food they have to bring around is not always of the very best! Santa Barbara would certainly win the prize for worst hospital food, but then I was very ill and I was only there for a day. I could see that King’s was trying to widen the ethnic range; and on my ‘test visit’, I positively fell in love with their instant minestrone and chicken bean jerk (I think it was the salt in the dishes, but they did not seem to mind that in hospital!). At home, I found myself losing interest in food – and as a long time ‘foodie’ (I must have some 200 cookery books), this was quite a change. Drinking and eating assumes radically different meaning when you are sick.

Places change:  my illness saw me inhabiting three major spaces. My ‘home world’ brought me to ‘my bed’ in my bedroom, ‘my big white chair in the window’ of the living room downstairs, and ‘my bathroom’ where a curious set of new arrangements emerged.  Settling into each of these places meant I was not likely to move to another place for a good long while.  Daily living was structured by these places – there was no rushing around here and there.  Secondly, there was my ‘going out world’ , which slowly became a kind of treat to be engaged with on good days, when Everard would take me  in the car to a nearby beach or wood  and I could get out for a tiny stroll and some fresh air.  Sometimes it would mean a journey to the hospital and this would include staying in a hotel overnight.  Occasionally, I would dress up and go to see friends – but not for too long, since I soon tired. And finally, there was my ‘life on the ward world’.  I spent around two and half months inside three different hospitals. I talk about this in some detail later.

Most noticeably, for the ill, the world centres on bathrooms. This is where you go to be routinely ill. Here you vomit, let your bowels out, pee profusely, feel extreme pain and nausea, bleed, and try to inspect and sort your body out with some kind of dignity and privacy. Largely on your own. But when you are ill, bathrooms can become difficult places to navigate. In hospitals, there is the long slow walk to the bathroom to find that someone already occupies it, and may do for the next half an hour. The bathroom might not be clean – in fact you never quite know what to expect. Will you be able to manoeuvre all the tubes and wires you carry? And of course they are always a bit basic- no home comforts here. Each bathroom has to be renegotiated – plumbing is never quite the same. And will there be enough toilet paper? In the outside world, you also have to keep your eye on the toilet – where will the next one be, and what will it be like? When I was ill in Santa Barbara, I would design my walks around public toilets and store toilets – suffering a lot from diarrhoea at that stage, it was important to have a ‘comfort zone’ (what a good word this turns out to be) every ten minutes or so!  But back at home, the bathroom becomes a very special place. Everything takes a lot more time when you are ill, so spending time in the bathroom is a long and big deal. After my surgery, when I had to be very careful in my movements and had a drain attached to my body for three months, I had Everard nearby at all times- a fall could have been disastrous. It was a long and slow exercise – and I took to sitting in the bathroom in order to wash. I just had to allow a lot of time for all this. Toileting and bath-rooming takes up a lot of the business of living when you are ill. The world is slower and more precarious.

Rooms change. Sitting or lying in the one spot made me intimately familiar with the rooms I dwelled in. They take on different lives at different times of days – the early morning and its shifting lights, the afternoon sleeps and business, the night descending, and the long, long sleepless journey into day. Shadows change, different people come and go, and sounds roll along. And at times, these rooms drastically change: the hell hole of the intensive care, with its Blakeian art all over the walls and the mad people screaming. My living room at home – which looked so different, strange and un-homely when I was in one of my encephalopathic fits. So odd, because usually the room of my own was about as comfy and homely as anyone could ever wish for. It was generally a wonderful room to be ill in for most of the time. It made me happy. I could sit in my wonderful big white chair and flick on the DVD, and the music. I had books I could dip into for a few minutes at a time (my concentration was very poor). The wonderful post lady would bring me (usually nice) cards bearing good wishes But I did not move around much- the house I now lived in was not really the same one I had lived in for the past thirty years. I will talk more about this.

Walking changes. My whole body moved much more slowly through the world. As I got better, I became more aware of different styles of walking. At some moments, there is no chance of walking at all (when I found myself in intensive care). Then I had to go through a phase of actually having to learn – baby like- how to walk again. It is a very dangerous and precarious exercise- I could and did fall. A lot of energy is invested into just being able to walk to the end of a corridor. It is a slow and careful watching of every step. And an exhaustion by the end of it that means a wheelchair ride back to your room. There are long periods of very slow walking as you feel no energy. This is not normal walking, and it does not look normal. People have to go slowly around you. You feel their annoyance with you, even their anger and resentment. People in the non ill world are busy people rushing everywhere with high energy. This you cannot do. Indeed, it is one of the key things I noticed as I got better: my energetic walk came back. I jumped into a room rather than slithered around the corner. I was all the time getting ready to dance. Oh dance! How I have loved dancing for most of my life. As a little boy I wanted to be a tap dancing star. I still do. I missed my vocation. And whilst I was ill I could and did listen to a lot of dance music – from tap and musicals to romantic beat pop. Dance I could not, except in my soul! Nowadays, moving better, I am very aware of the ill as they move cautiously around in the outside world: they need looking out for, and given support. It is vulnerable to move slowly in a busy world.

People change. The world of faces and people starts to change dramatically with the illness. Most of the old networks start to crumble – friends from the pub, friends from work, and acquaintances in the street- start to disappear. Some new temporary networks appear – doctors, nurses, people concerned with health. And some people rise to the top of the friendship pile with glowing colours. Everard above all was with me day and night for every single day of my illness. Calm and unfussy, he was quite simply never ‘not there’. For well over two years, he was there as the key presence in my life at every moment. I sometimes think that he was more aware of my illness than I was. And even in my most dramatically ill moments – the encephalopathy, the illusions, and the surgery – I knew somewhere that he was there by my side. His centrality to my life could not be mistaken. I hope everybody has their Everard for their illness.

Every item of my daily life  – big or small – came to take on a new shade and colour through my illness. And I think it is important to know this. It is the everyday ordinariness of being seriously ill. There is more to be said on all of this.

Activities change: A lot of the day can also be seen as ways of handling the illness. In hospitals this is clearly identifiable; the regimen of pills and observations is strictly observed and punctuates the day. Life is restricted. But at home, you live in the land of wide open spaces….there is- potentially- more flexibility.

I found that for each symptom there was a flurry of activities that were needed to deal with it. For example, sudden sickness would usually require me to be sick not just the once but a good few times; and the last time- possibly an hour or two later – would be clearly identifiable because I would feel there was absolutely nothing left in me to bring up. Then I needed about four to five hours of complete rest. If I had the cramps in bed- excruciating pain- I had to get up and do a kind of yoga bend to get rid of it. Not always easy. To avoid encephalitic attacks, I had to make sure that the levels of lactulose to be taken were always foremost in my mind. Diabetic injections and monitoring bring their own rituals of time, injections, blood sampling, minor bleeding, note taking and ultimate eating. Being on drips or catheters leads to a whole series of manoeuvres in trying to move the body.

Illness as music: Yet, in retrospect, I am now not at all sure it was all time filling and time wasting. For example, with music: I re-discovered my old passion for ‘musicals’ – those magnificent vehicles of transcendent joy which are so much more complex than many theatre critics seem to understand! Since my childhood I have always loved musicals (I took tap dancing lessons when I was 9; I saw the films of Carousel and The King and I – both released in 1956, when I was 10; I adored the stage productions of Bells are Ringing and Rogers and Hammerstein’s Cinderella at the London Coliseum when I was 11), and it is the prerogative of every gay man to love musicals anyway. But somehow I had never taken them seriously (I guess because people don’t: it is not highbrow enough for serious minded posh people!). As I played many other styles of music, it dawned on me my passion was for the musical, the handsome lead singer, and the grand Diva. Those wonderful songs, that rousing dance, the wonderful heart stopping overture! This is hardly news for a gay man of sixty: but now I had time to explore it more. The same went with watching DVD’s: there is a lot of film trash out there, but with the help of a postal DVD film club I organised little film seasons for myself: ‘ the early musicals’, ‘important gay films of the 1960’s’, the ‘works of Hitchcock’, or Doulas Sirk; the ‘films of Charles Dickens’ and so on. I kept lists and when I could, I read a little around them. It was not simply a passive watching but quite an active activity. I discovered that I was really quite interested in films (I hardly ever go to the cinema- except when I am in California, and there it is just part of the routines of the everyday lives of virtually all friends there!).

Getting by on the ‘bad days’; filling up the ‘good days’

I suspect many seriously ill people soon come to divide their life into the ‘good days’ and the ‘bad days’. On good days, the body tells you can do a few things: on a bad day, simply forget it and just get through the day alive! The bad days are fairly simple: I either did not know about them because I was in a kind of a coma trance; or else all I could do was ‘be ill’: vomiting, running and sitting on the toilet, dealing with pain (which in my case always seemed to be quite mild) and just plain sleeping.

My good days were organised around ‘mini projects’, as I liked to call them. I came to be aware that these projects could be disrupted at any moment – when a ‘bad day’ might arrive at a lunch time and I would have to go to bed. But within that confine I could sort of schedule a day. Everything was slow and I learnt not to expect much. But my little projects could be divided into listening to music, reading a little, watching DVD’s, having long rests, seeing friends, doing some work, and thinking – quite a lot. This is how I passed my day – and in some ways it is no different from how I pass my days when I am not ill. But the pacing, the content, the certainty have all now shifted. What I did not do on these days was ‘give up’. I could not achieve much; I had to deal with the un-creativity and the uncertainty of it all; it was all ‘passing time’ – waiting for the big day of the surgery. But illness is always a round of doing things.  It is a world that dramatically changes, is deeply uncertain, but which is never passive.

Life, as they sometimes say, goes on. And in my case it has!

The story will continueimages-3















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