THE EXPERT OF SMALL THINGS

Picture Cambridge on a sunny morning. Here, this will help...

Imagine arriving, not at the entrance to an imposing college courtyard but a court nonetheless. Imagine being greeted by your favourite surgeon and feeling perfectly at ease as you climb some stairs with him by your side talking about your recent trip to India...

Imagine almost reaching the top of those marble stairs and being dazzled, not by the (really quite cool) ceiling architecture, but on finding the room packed full of strangers, all sophisticates in the field of neuroregenerative science expecting you to present the Human Face. 'Just a handful of people in jeans' was how The Blue Eyed Surgeon had described the event to me. I turned around and pretended to flee down the stairs...
The focus on this year's course at the Cambridge Centre for Brain Repair is on inflammation and I was one of the patients interviewed - the other was a man living with Parkinson's Disease, whose life story included surviving the Gulf War - if you can describe developing Parkinson's as survival. Apparently the military have taken partial responsibility for what is believed to be a result of chemical nerve agents deployed - I didn't realise almost half of all Gulf War veterans are suffering some form of multi-system illness. I thought the soldier was a hard act to follow. He had a DBS in his skull! (If Keith hadn't leaned over and explained what a Deep Brain Stimulator was, I wouldn't have known either).
Prof Martin introduced my case, asked me on to the stage to elaborate on life with SLE, and then presented a fabulously grisly series of images and video footage of the various operations we have endured together (at opposite ends of the knife and scissors). I realised that it was the first time I was being given the opportunity to weave glaucoma and lupus into the same conversation. In clinical environments I am usually expected to siphon off the relevant aspects of my case to the particular departments. Here, I could be whole for a while.

When the floor opened up to questions, a man at the back of the Cripps Court auditorium asked me a delicious question about the marriage of living with chronic disease and my life as a creative writer, which gave me full opportunity to be my poet self. In fact, through the course of the interview, I found myself mentioning the fact that I am a poet several times to my own surprise. The word kept falling out of my mouth. How have I coped with life endangering and sight endangering diseases? Poetry! The gift of finding beauty and connections - the gift of seeing more than what is visible or tangible or even real in the most concrete sense. It is an unreal thing to be sick all the time. Unreal to have been contemplating your mortality since you were a teenager. I can't begin to imagine how I would or possibly could have unravelled my life without literature, art and poetry.
I thanked the stranger for his lovely question. Later I learn that the 'nice man at the back' is only the head of Stem Cell Medicine at Cambridge - Professor Robin Franklin.
Yes, I'm name dropping! What of it? And yes, I took a selfie before I left the house - because who doesn't?