I had a transplant when I was 22. I have now had my kidney for more than half my life and my medical condition is stable. However, it took many years for me to be able to write about or to be able to explore the impact of my invisible medical condition on my identity. I’ve written in more detail about how I came to be able to do this in my doctoral dissertation.
Undertaking an autoethnographic study of my experience of kidney disease for my doctoral research allowed me to articulate some of the ambiguities and uncertainties of post-transplant life where I am not cured, but am well and yet still a patient. I’ve recently been exploring how my academic and illness identities entwine.
In this blog post I would like to talk about how I learned to pass as “normally” healthy and why I have had to unlearn that in my academic life. Relearning vulnerability in academic life is strange—almost as strange as learning how to be healthy. I have had to use my academic brain to understand my medical condition. Nowadays I am learning how to use my chronic illness identity to redefine my academic life as acceptable otherness.
I have been able to do this through writing about the experience of becoming healthy. I had never been healthy, but I had learned how to fake it as a student in order to pass as normal and enjoy the benefits of this. Actually being healthy is another matter entirely. I did not know how to manage it and my management of my condition has always been one of the few things I could depend upon. Health is violent and rude. I will never forget my first post-transplant experience of hunger - I thought I had suddenly fallen ill again. My longed-for health overwhelmed me. It also took away the need to pass in which I had invested so much time and energy.
Autoethnography has helped me get to grips with much of this because it combines personal and academic writing in order to challenge conventions and to redefine identities. This allows me to explore both an analytic and emotional perspective and to see what happens when I play the two perspectives off against each other. I had a lot of fun with this. Part of the reason it worked so well for me was that it acted as a container for the life-long experience of fear and uncertainty and allowed me to process these emotions in different ways and at different times.
What I had not counted on was the level of complexity I would discover. Or the unintended consequences of rearranging my identity. Or the depressing effect of the realisation as an older person that growing up had not been so easy. I also didn’t find it easy coming to accept the extent of my disability. So I did what I’ve always done – I kept probing. One of the advantages about health is that you do have a lot more energy and focus to do that sort of thing.
I quickly saw themes of shame and silence in my writing. It took me a bit longer to appreciate that while silence can be a form of submission, it can also be a form of resistance. I had maintained a silence about my condition in order to fit into a dominant, health chauvinist narrative. But this silence also allowed me to resist that narrative in certain ways, for instance, by allowing me to “come out” as chronically ill on my own terms, to create boundaries about who saw what in my life and to protect my vulnerable core. While I manifested “normalcy” I inhabited (and still inhabit) a marginal place, a borderland between health and illness.
My silence about living in this place was partly because I didn’t have the words to identify it, but also because I wanted to protect it and to allow myself to continue to pass from one state to the other without being parsed. I have found myself in quite a few peripheral places as an adult. For instance, on campus, I work in a writing centre that is has aspects of academic and service identity, and is both and neither. The students who visit us are also often peripheral. Some come to develop their academic writing to fit in better with the mainstream. Others come because they are foreign students and don’t have anywhere else to fit in. My colleagues are in various ways marginal too and we have no dominant culture. Our aim is to make our writing centre as open to diversity as possible: a space where a multiplicity of voices can be heard.
I think for years I have used my experience as a person with a non-normative identity to contribute to a place where other non-normative people can feel at home and contribute to the larger organisation in the best way they can. My strange, liminal post-transplant identity formed me and in consequence has helped form my workplace. And I wouldn’t want it any other way.
Rose Richards co-runs the Writing Lab at Stellenbosch University Language Centre. She has recently published on voice and silence, and on the ethics of writing about the embodied self. She blogs at Scenes from Re(n)al Life.