BRAIN FOG

Ben Nicholson, Cornish Port, 1928

It's the overhanging fluorescence
even when the sun
is tip toeing on blossom.

It's the churning of the pump
grinding out the hour
even as the robin sings.

Red breast, snow petals;
it's the colours that I miss.
In here, we are all in blue.

The tea man came back
three times to ask me -
did I say coffee or tea? Tea!

Gabriel is studying to be a biomedical scientist.
I worry for his scrambled brain.
Mine is already scrambled

by blue walls and fluorescence.
And the long slow road
the wolf and I are walking.

© Shaista Tayabali, 2015

(When you look at Ben Nicholson's Cornish Port above, what do you see? I see a goose with a bright orange beak, carrying a village on her back, and swirling the waters with one naughty foot… pareidolia, I have learnt this is called - a phenomenon of the brain perceiving images that aren't necessarily there/real/true… I have promised to write an article on brain fog for the Cambridgeshire Lupus newsletter. I have plenty to say about my foggy brain!)

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?

Eye Meditate

Trying to meditate

while we wait,

sardines packed straight

at the eye clinic station

My nerve ends hum

with others' emotions

I breathe in fear

and breathe out tension.

Conversations

start, and stall

desultorily

Veterans meet

and greet

ostentatiously,

"Doris! Over 'ere!"

"Audrey! It's you!

What're you doin' 'ere?"

"Same's you, I expect.

Me eyes, but,

Fancy meetin' you 'ere."

Daylight melts

to a grim fluorescence.

Names are called,

pupils dilate.

We wait.

I continue

to try

to meditate.

This piece is dedicated to Keith Martin, my surgeon, my hero. When my name was finally called and while Keith gazed suspiciously into my foggy dyed eyes, he tossed a small nugget of joy across the tonometer... "I've been reading your prolific blog and I'm impressed." Woo hoo!!!! If only it were de rigeur to fist bump your eminent surgeon. Instead I settle for a demure, "Well, so long as you weren't bored"... while inside I am all glee. Le fruit de la meditation, peut-etre?

Deye mon gen mon

Beyond mountains, there are mountains
Haitian proverb

In 2003, Tracy Kidder published a book titled 'Mountains Beyond Mountains': the Quest of Dr Paul Farmer, a Man Who Would Cure the World'. Despite my years of prolific reading, I rarely recommend books. I am one of those who believes that books find us through some alchemy of their own. I am making an exception here. Read 'Mountains beyond Mountains'! It is the challenging and moving biography of Dr Paul Farmer, medical anthropologist and compassion incarnate, as told by Kidder, who travelled with, observed, argued tentatively and finally deeply admired and felt blessed by 'the fates that allowed my paths to cross his.' Farmer found himself in Haiti in 1983, still pre-med, and has never really left. The poverty, human rights abuse, relentless political and structural violence, the horror of multi-drug resistant TB and the HIV-AIDS epidemiology, are extraodinarily lit with humanity - that gift that is spectacularly our own.

This is a picture of Dr Paul Farmer attending to one of his patients in Cange, central Haiti. I love the challenging, almost mutinous look on the little girl's face. She seems to be saying, "Ah oui? So you think you can save me?" And I like the corresponding seriousness of Paul Farmer's expression. "I'm trying cherie." But, despite her pretty lacy top, and the silver hoops in her ears, she looks tired, a little dejected. Does she have TB? More than likely. HIV-AIDS as well?

Kidder writes:

'In Haiti, we'd had a conversation about his daughter. A month after she was born, a woman had come to Zanmi Lasante (Partners in Health) suffering from eclampsia. It is a disease of pregnancy, of mysterious origin, found preponderantly among poor women. It leads to protein in the urine, hypertension, seizures, and sometimes death, for both mother and child. The treatment is magnesium sulfate and delivery of the child. The clinic was very busy. Farmer was rushing around trying to get the treatment started. He could hear the heartbeat. He later recalled, "The mother was seizing. I said, Hurry!" Everything was going okay. Then the baby was born, and it was dead. A full-term, beautiful baby, and I started to weep. I had to excuse myself and go outside. I wondered, What's going on? Then I realised I was crying because of Catherine." He had imagined her in the place of the still-born child. "So you love your own child more than these kids?" he asked himself. He answered himself, "Look, all the great religious traditions of the world say, Love thy neighbour as thyself. My answer is, I'm sorry, I can't, but I'm gonna keep on trying." (p212-3)
These are the last lines of the book:
'Haiti was still bleeding away, like its topsoil. But there were some spots of hope. The Red Cross had announced plans to establish a transfusion post at Zanmi Lasante. Nearly twenty years since Farmer had watched a woman die in Leogane for lack of a transfusion, and he finally had a blood bank that could serve the central plateau, a source of blood that patients wouldn't have to pay for. "No more weeping over blood," he wrote to me.' (p301)

Just as Kidder felt all those years ago, so do I thank the fates that brought this inspiring being into my field of awareness. I am blessed with my own medical opthalmologist and glaucoma surgeon who save my sight, my consultants and registrars who make the latest monoclonal infusions available to me; but it is the pioneering work of doctors like Paul Farmer that gives me a kind of inner radiance, a faith beyond faith to believe that mountains beyond mountains can and will be healed.