Transplants and the Total Life Experience: On the 10th Anniversary of ‘Becoming Ill’

 

 

 

 

 

Today, March 9th, marks the 10th anniversary of my ‘illness’.

It is this day in 2005 I was rushed to hospital in Santa Barbara, diagnosed with ‘alcoholic cirrhosis of the liver’, told to give up drink or die.

It was also the day I first heard the word ‘transplant’

It was the first day of my new ‘total life experience’.

It was the first day of the rest of my new life. 

On this web site, I have from time to time written about parts of this experience. If you are interested you can find them at:

I tell my very short story of illness on the story page of the British Liver Trust : see Ken Plummer’s Story

I tell a longer version at Ken’s Story: The Diary of a Transplant Patient

My first auto/ethnographic academic article on all this can be found in ‘My Multiple Sick Bodies’

I write a little about just how much illness transforms everyday life in Illness as Disruption

And here I write about how I came to give up drink at the start of my illness: Giving Up Drink

I have also written about my psychotic hallucinations in intensive care

The photographer Laura Cuch has a photo essay on transplant people and includes me in her grouping. see Images of transplant man ………

Outline of a course on narrative and illness

Bibliography can be found at Narratives and Illness

I have now made them all accessible through a new page on Transplants.

 

Illness as a Total Life Episode

Retrospectively, I think I can see this whole stage of my life as what I now call a Total Life Episode. This is not the same as a turning point, life crisis or epiphany though this may well be part of it. Rather it is (and I think it is widespread and common) a stage of life where the stuff of social experience is marked out for some considerable time period as wholly, radically and totally different from the other experiences of your life. It is not the same as the widely documented life transition stages (the youth crisis, growing old), nor as a crucial turning point (like coming out as gay or being reborn as a Christian). It is a kind of moratorium, maybe  an eschatological moment (the science of the last four things: death, judgement, heaven and hell), the laying down of a different order of life. Or so it seems at the time. Major examples of this could be the survivors of holocausts or disasters; less extreme examples could be the life after the death of a child, the breakdown of a long marriage, and the arrival of a major illness. In this experience, a major set of loves and life are challenged.

I suggest four features of this total life experience:

• It is total. That is to say it is all engulfing. In the life, there is no getting away from it. It is with you 24 hours a day all the time and there is no escape. Your life is lived through this, and it wasn’t before. Little escape routes and cracks can be momentarily created : but there is no real getting away from this new life. In my case, I spent three years doing little else but being ill.
• People all around you find they have to respond to you in ways that are now different. They have to accept that you are in different circumstances. They can support you, or reject you, or neutralise you. But they know that you are no longer the person you used to be, and this has to be handled. The worlds of significant others also drastically shifts. I lived in a new world of illness and its significant others. In my case, I found friends becoming reorganised – some fading away and new ones appearing. and a new self with a new voice appeared.
• The identity and self awareness changes. Whatever you were, you are no more. Major roles, responsibilities, functions are stripped off you. A momentary mortified self needs re-birthing. It brings a time for reflection: existential questions loom large. I was Ken; I was seriously ill; I became someone else, almost. (And yet – and here’s the rub- now I am Ken again).
• After it is ‘over’ (and for many it never is), it leaves a symbolic mark for massive memory work. The world goes back to a  kind of normality, but the event provides a marker. In some ways a life is lived pre the event, and after the event. In my case, I have returned more and more over the post illness years to an older and more stable self than ever before.

In some sense, what I have been trying to do in my little pieces of writing was to get hold of this episode: to hold it up and inspect it in order to see what light it can shed on illness, life story, and indeed society and life. I have spoken a few times about it publicly ( four in all) and I have had some work published. Some friends are surprised that I keep looking at these things. But for me the telling of the sickness story has been criucial in my re-entruy to the world of normals, in getting a life back.

But just because the moment is over, it does not stop the haunting presence of the illness – and it will probably stay for the rest of my life. A Total Life Episode has its moment. But it does not go away. ‘Recovered’ it has already been with me for eight years!

A communal world

Just as I was completing my original ‘illness writing’ in 2007 ( an act I regard as critical in my own subjective recovery- paralleled what the doctors did medically), I came across a short autographical piece by a writer whose work I have long admired, Paul Robinson. In 1976 I read his The Modernization of Sex, a book about theorists and researchers of sexuality in the twentieth century- Kinsey, Masters and Johnson and the like. Later I read other works by him, mainly on Freud. I had no idea that he too had a liver transplant – but quite a while back, in 1990. Reading his short account, found so much that mirrored my story. I want to close with a few lines from this tale, because it so mirrors mine.

Since my final hospitalization in 1990..I’m intensely conscious of how lucky I am to have gotten sick at the right historical moment: liver transplantation has been available less than two decades. I would be dead had the disease attacked me anytime before 1980. I am thus a man who has been granted a reprieve, a pardon without parole. I have resumed all the activities of my previous existence with no diminution in efficiency or enjoyment. The completeness of my restoration is most evident to me in my work as teacher and scholar. If anything I have become more intensely focused on my calling than before. …. In virtually all particulars there is no difference between the way I live now and the way lived before I was sick….. I may be enjoying a sort of afterlife but it is manifestly constructed of the same psychological and intellectual stuff as my old self.

See his Living the Afterlife

 

 

My story then is not wholly unique. Of course the details of my story are specific to me; but I hope that much of my story will ring bells with others. Just as Paul Robinson’s did with me. We tell our stories to help ourselves and to help others. Stressing our uniqueness is part of our humanity; but so too is the search for the common elements. Telling stories of illness and transplantation is a way of sharing our common humanities.