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I had fallen ill as a baby with a rare disease, haemolytic uremic syndrome, which left me with incurable kidney damage.
Despite a regimen of medication, visits to doctors and a very restrictive diet, my kidneys failed and I found myself on dialysis at 21, awaiting transplant.
I was one of the lucky ones. I was only on dialysis for about a year when I received my transplant. My new kidney was strong and healthy and I overcame the early settling-in period of rejection episodes, problems with medication and learning to live with a compromised immune system.
After my transplant my mother wanted me to write my story, partly so I could heal emotionally and partly so that I could use my story to inspire and help others. I wasn't sure what to tell. Though I could see no story beyond the medical story of procedures, medications and blood results, I knew my story involved much more than this, but I could not yet articulate it.
I spent the next decade or so escaping from my identity of being a person who had a transplant, passing as "normal". I was so immersed in passing for normal that when I applied for a mortgage in 2006 and was denied health insurance, it drove my breath out of my body with shock.
My shock and disbelief were so great that they would not go away. Instead, they built up until all I could do was to write about them. Soon I realised I had never really thought about my own story and what it meant to me. How could I tell others how to see me if I could not see my own story?
I found so much to say that I decided to turn my writing into a research project.
I started my doctoral research about what it meant to be an organ transplant recipient, how I was not ill, even though I was not conventionally well.
Using a research methodology called auto-ethnography, I returned to my story of living with kidney disease and started on an amazing journey of discovery.
Auto-ethnography is particularly useful in writing about the experience of illness and reflecting on illness narratives because it allows the observer and observed, the narrator and narrated, insider and outsider to be the same person.
This means you can look at the problems of representation and try alternatives to existing ways of telling certain stories. One of the first things I discovered was that narratives of kidney disease are scarce.
Those that exist tend to focus on medical procedures. The narratives of the childhood experience of kidney disease are scarcest of all, except for narratives of life post-transplant.
I realised I had to write my story with very few stories to help me.
My study of my own experiences showed that writing the story (or stories) of chronic kidney disease is complex, nuanced and dynamic.
My dissertation was submitted for an international award and was placed in the top 10. This generated quite a lot of excitement and publicity.
These days, thanks to medical science, more people than ever are surviving diseases that would formerly have killed them. Most of us will at some point in our lives need to learn to live with a chronic illness.
Most of us who experience this will have to continue to live in our own communities.
We can only hope there will be a place for us to do that and that we will be able to tell stories that make our experiences meaningful.
At first I thought my story was mine alone, but it seems to resonate for other people too. I hope my story demonstrates to both outsiders and insiders, who often submit to narratives that are forced on them, that more satisfying alternatives can be found.
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