A beginning, a middle, and an end is the proper way to tell a story. But I have difficulty with that method.
Jeanette Winterson, Lighthousekeeping
How and what am I supposed to write?
How can I write and how much exactly are my words going to say? How much can others ever really comprehend?
These questions – of writing to make sense and meaning, to understand, to find a narrative – have permeated these pages throughout the last four or so years of writing.
The thing is, as I wrote in an earlier post, chronic illnesses that require constant upkeep and daily management are like this: as one’s health fades in and out, perhaps passing over rough, jagged peaks and then plummeting down through ensuing troughs, so does one’s voice. You are left stranded, and speechless.
These days, and through much of my adult life, I’ve felt like I known this scenario all too well. Sometimes it feels like my voice has faded in and out so many times that I cannot be sure of the things I am meant to – or even want to – say. About how I really feel. About my health. My life. My days of dialysis. My transplants. And, now, about my recovery. How can I ever truly write what my body and mind are feeling? How does an injured and constantly changing body find a narrative for experiences that defy the linear notion of both what an “experience” and a “narrative” are meant to be?
So this is how it is.
You speak, only to then question the very things you’ve somehow managed to say.
Wordlessness was something I discovered after my first transplant, especially while I was recovering and trying to come to terms with it all. There just seemed so much. The very fact of needing the transplant itself was enough to shake me. I was still in denial about needing my first transplant the very day I received it, at the age of 20. Then there were things like what it meant to experience dialysis as a teenager, a time when we are led to believe we are meant to be carefree. Perhaps the biggest of all, although I did not know it then, was that my life from there-on would never be the same. Words, and not even the most profound or deep, could express the complexities of my experiences. There was always a gap.
Nevertheless, through speaking and writing eventually I did find a form of comprehension and peace and even, perhaps, a narrative.
But now I can only see too clearly how that narrative could only ever be incomplete.
But back then, I think, possibly, this narrative in some ways saved me. It enabled me to fit the pain and injury and the impossibility of my experiences into a digestible story so I could go on. So I could walk through the days looking forward. Even though I knew the very experiences I had endured – the sickness of kidney failure, the unending, relentless days managing life on dialysis, the transplant and recovery – would be things I would be enduring all over again.
This is why for transplant recipients – and especially those who receive transplants just as life seems to be getting going – the task of creating a narrative can be especially complex. Your backwards story is typically forwards too. You can always see it there, hovering all around you, including in your days to come.
And so it is here – in telling their stories – that transplant recipients face an ever-present kind of paradoxical narrative dilemma. Transplant recipients try to find their voice, only to have that voice shaken, un-understood, and then sometimes seemingly eventually taken away.
So, how and indeed what am I supposed to write?
Most of the time it is voicelessness that seems most honest.
But I will still write. I will still try to speak. Although I now know that to be true I can only ever write and speak against the grain.
There is no beginning and there can be no middle or end. Hopefully, though, there is still some kind of sense, meaning and understanding out there to discover, to re-find. Because this is how I now know my experiences and life will always only ever be.