CLIVE JAMES, ARS MORIENDI

‘Put that down.’ 

Clive always said that, if he thought I turned a phrase neatly. That’s good. Put that bit in. 

‘In’ to the ongoing double narrative of our lives that we were both writing separately even in our moments of togetherness on the Addenbrooke’s infusion ward. 

We met on one ward - D4 – hooked up to the same treatment of intravenous immunoglobulins, both under the care of the same wonderful immunology consultant, Dr Kumararatne - and then a few years later, on G2, the new incarnation. There is going to be a third iteration, but Clive will miss that one.

Death is so annoying. I feel a bit cheated as we all do when the continuity of our conversation with friends gets interrupted. But the nature of a writer is to personally provide the material for imaginary conversations to continue for all of time. Meet a person once and if they make an impression, you can re-meet them. Take down the book from the library of your mind and find the chapter titled ‘Clive’ or ‘Shaista’. In our case, that first meeting in April 2012 on D4 was not destined to be our last. Four years passed from our first meeting and one day a nurse told me that Clive had gone up to another Indian patient and hailed her across the tubes, ‘Shy Star! Lovely to see you again, kid.’ Except it wasn’t me. So I asked the nurse to book our next slots together if possible and on we went for the next three years, him booking in concordance with my dates if I hadn’t done so. We emailed throughout the years. 

It was a strange friendship because Clive saw himself as mentor to a new young female writer. But the not very new or very young writer had no such notion. I was often and often extremely direct with Clive when he made remarks that didn’t sit well with my own sense of self and my feminism. Dude, seriously. You can’t say that! Or at least, you can’t say that and then expect me to take your praise of my work seriously. Clive once said I had a type of arrogance not dissimilar to his. Eek. Make of that what you will. But presumably he never imagined a pipsqueak would squeak back. Or roar back, baring her teeth. Mostly it amused him, and probably made him want to persist with that thread but for the fact that he genuinely cared and eventually ceased to undermine a real friendship. One during which he swiped my favourite snuggly hat. One during which he introduced me to Tom Stoppard. One during which he offered to send an essay of mine about Les Murray to Les Murray. But I never got around to it, because life with illness is an interrupted life. Hold a thread here, concentrate on keeping it unbroken, and another one, just over there, breaks. Les died six months ago.

Clive’s eyes would light up when he saw me. And this was because if I walked on to the ward, I was still alive. If I was alive, there was conversation to be had and a moment to be shared. Preferably a merry one but I never held back on sharing my sorrow, depression or painful reality. I lifted up my eyelid once to show Clive the various shunts and blebs that my glaucoma surgeon has sown in over the long years to save some sight. And Clive wove the moment into one of his poems. 

A year before we met for the second time, Clive had been in correspondence with and then lost a fellow cancer patient. She was, believe it or not (but if you have read that article you will know this to be true), also Indian and, also a blogger. Shikha Chhabra wrote under the pseudonym Oblomov; her blog was titled Oblomov’s Sofa, and Clive mentioned her in the Guardian. It was a respectful nod he offered her, one that meant for a brief sweet while, Shikha was the acclaimed writer she was always meant to be. She died at 24, so losing me to an early arrival of Death was not implausible. And I have brushed that cloak - or did the cloak brush me? Either way, it has not been my time yet to cause that particular clutch to the heart and breath that hearing of Clive’s death caused me. I am writing because he would expect me to. Because he’d think it a wasted opportunity and because I know he always checked my blog, ostensibly to see what I was up to, but also to see if I was writing about him. He was rather disappointed that I hadn’t brought the ‘yoof’ in as he once had hoped I might. 

I have IVIg tomorrow. It’s a Thursday. And Clive won’t be there as he hasn’t been for the past several months. In his last email he made light of a recent operation, and I chose, ridiculously, to pretend he just might merry his way back to the ward. Even though I knew he wouldn’t. But he had already outlasted that type of ‘knowing’ for ten years. 

Death is so annoying. I am so tired of it. I ought to respect it and fear it, but really... I can’t. Not this death anyway. It was preceded by so much humour that the cloak looks a little less terrifying now. A cheery pathway is being cleared for us by the kid from Kogarah. 

And presumably, heaven and hell aside, I will hear him hail me again someday, his eyes lighting up and my cheeks and lips curving up. Unless of course he mistakes that other Indian girl for me... 

GRETA THUNBERG, CLIMATE CHANGE ACTIVIST

My father always asks, ‘What’s the good news?’
And as you and Dad and I know, finding the good news seems an almost impossible feat these days. Everywhere is humanity in crisis. With each step of seeming progress we strangle ourselves and our planet. For each glimpse of an extraordinary human rights achievement like the UN’s adoption in 1948 of the Universal Declaration of Human Rights, we decimate ourselves with slavery, genocide and war.

Into each troubled time, a prophet emerges. Vilified, of course, by many, but onto these individuals entire nations pin their hopes for action.
So what’s the good news?
Greta is the good news.

In a time of instagram frenzy for likes, and a reality TV show host for President - one who crucially did not sign the Paris Agreement - Greta Thunberg takes personal responsibility for climate change activism. Watching her meet senior officials and instead of playing the smiling game, be the straight talking activist she is, is radical.

There is talk of a Nobel Peace Prize, which makes me think of Malala Yousafzai becoming the global voice of girls’ education, and like Greta, being the daughter of a man who listens and demonstrates no particular ego in sitting beside his daughter as an equal.

CROCUSES (OR ‘THE ONE DAD TRIES TO LEARN’)

My father knows when
the crocuses are out

And when the snowdrops
and when the bluebells

and how to listen, carefully,
to the nesting birds

trilling,
between our rooms.

Daisies will come
and roses will grow

and perhaps we shall walk
and reminisce about the snow

and kick up some leaves
and weave up some dreams

while the world passes by
my father and I.

© Shaista Tayabali
(Dverse Poets Open Link)

Dad fell hard on the concrete pavement outside our house, broke his femur and had surgery a few weeks ago. His road to recovery is long, challenging and filled with his extraordinary light.

MAY THE SUN SHINE ON YOUR WENDY HOUSE

The heat! The heat!! 

The Amazon fires! 

Last night I trawled the house looking for a fan and came up empty handed... 

This summer has been a summer of children coming and going - one nephew and niece from Singapore, and now my twin nieces from Malaysia,  and as you can imagine their houses are designed perfectly for intense tropical heat, the humid or the dry kind. ‘Where’s the air conditioning?’ Bella asks, as she flings herself about in my bed trying and failing to get comfortable. 

Me, I can’t decide. The heat can be a tricky thing to manoeuvre a body so sensitive to extremes of any kind, but sunshiny light casts a sense of hope over the world for me. Glaucoma as a condition is a net of darkness, the thief of sight, and I am constantly battling a world of changing, shifting, unnerving shadow play. So when the strong summer light comes and stays, I feel living becomes possible again. Reading becomes possible. A house full of books and fading sight can be a tough pill to swallow.

Speaking of pills, do you remember the very first person you knew who took pills? It is generally an older person, isn’t it? Mine was my grandfather. He had surgery for a pacemaker after serious heart attacks and I remember all his tablets, and although vibrant in spirit, how frail his body was with his walking stick ever near; so it has been an odd business being the tablet taker from the age of ten. And wondering what the four children make of their aunt with her tablets, and eye drops and staying in bed so much, and chipping off to the hospital for hours and hours, and sometimes days, weeks... but after the ghastly campylobacter and PICC lines of earlier this year I seem to have escaped nasty infections thus far. (Touching wood madly...)  

 
I had some scuffles with A&E, am hobbling around with Achilles bursitis trying to catch Pokémon, balancing my days finely on excruciating migraines... a new drug and I did not fare well together and my steroids have been souped up. Rituximab is around the corner albeit half the dose and twice as far apart. Also, I had a birthday with hand made cards and some delicious Malaysian food … 

So onwards like a bullock pulling a cart I go - we go - together, into light and heat and coolness and shadows, building campfires for warmth, creating Wendy houses for play, wondering if the little mouse who was bold as brass on our kitchen counter the other day has run far, far away.

 

VERA, AN ANNIVERSARY

A small brown bird flies close to me.
Yesterday, a butterfly -
- white, monarch -
I scent my grandmother near.

She was not a poet
Nor a deep thinker,
But she liked the quiet,

Which was strange
Because she hated to be bored;
And yet she could sit for hours

On balconies, in conservatories,
With only herself for company,
A book, a ticking clock,
And the sky - ever changing, ever the same.

©Shaista Tayabali, 2019
Inspired by Vera, my beloved grandmother who died a few days after my birthday, six years ago... both our anniversaries are coming up as Vera and I were born only two days apart. Many lifetimes but only two days... 

 Participating in DVerse Poets Friendly Call to Open Link night ... 

POKEMON GO! (AMONG WOODS AND WISTERIA)

Friends who live away, say
England's green is unlike any other.

So I stop by the bridges,
and let the green wash me clean.

Eyes, ears, nose and... breathe.
I know I live in a conservationist's dream.

The birds mark time with me.
Chweet! Trreet! Prreet!

Have you ever tried to transcribe
the song of a bird? It is beyond me.

I catch Pokémon as I walk - the game
that reflects our real world biome.

On my phone, in the palm of my hand,
friendly creatures snarl and land

feet from me, greeting me.
Old worlds, new worlds,

we are the other, we are each other.

All it takes is a different sense of seeing,
that I am you, and you are me.

Captured now and then,
and now again free.

(c) Shaista Tayabali, 2019
inspired by Anmol for Dverse Poetics: On Wandering & Observing)

A LINE OF FIRE

It takes an eternity to decide
to move one way or another;
an infinity of maybes and what ifs.

A bird muscles her way
through a series of calls,
like twanging rubber bands on repeat.

Nothing helps a human
to make a decision,
with clarity.

Everything is obscured.
We are a series of obfuscations,
an infinity of chaos.

Yesterday, my tears were a hurricane.
Today, I am sitting in a stripe of sun.

Tomorrow, the purpose I sought
will greet me at my door,
and welcome me home.

© Shaista Tayabali, 2019
For Dverse Poetry

(Auguste Rodin, The Dancer, 1913. Kettle’s Yard)

EASTER ANNIVERSARY

April has been a busy month. Towards the end of March I was asked to offer my writing services to a book project recording the lives of some of the folk who live in our village - a very tiny selection but hopefully a somewhat representative one. In between a plethora of interviews, I have also embarked upon a new drug called Mycophenolate Mofetil (I had tried it before and it had been extremely unpleasant... this is what the doctors call ‘re-challenging a patient’... a bit like facing an old foe in a new duel). A gastroscope wound its way into the mix with a bunch of biopsies taken. That left me a little bruised and weary.

At Easter my feet found their way to our local church where I bumped into friends who were arranging the Easter flowers. I ended up helping with the main arrangement by the altar, and marvelling that ten years had passed since I was in hospital at Easter, 2009 - the three month long admission that marked me on deep, unfathomable levels. A decade ago I had a clear understanding of what was needed of me to live, or rather, to go on living. In some ways, the essentials haven't changed - two of which are named Perveen and Chotu, or Mum and Dad... but I am once again, worn to the bone. To the cells that deplete, and replete, and deplete, and on and on... until I cannot see anything but the forks and crossroads and ahead, all woods. But where the flowers are, there the light still is. Here, a bouquet of carnations, for you. 

HANAMI TEA CEREMONY, KAETSU CENTRE

I never knew the Kaetsu Educational and Cultural Centre existed until just before Japan Day earlier this year. I never knew the Centre had been hosting celebrations for Japanese culture for decades. It’s nice when you discover depths to the community life that surrounds you...although nothing really should surprise one about Cambridge... it isn’t London, but it is evolving beyond its origins,beyond fenland and university land to a place where different migrating worlds collide.

Back to hanami in the heart of town. I arrived too late on Japan Day to enjoy any of the food - of course, Japanese food would be the first to be devoured! But I did sit down at the calligraphy table, and I did buy some beautiful handcrafted lavender scented worry dolls made by Kazuko, the chef herself!

I was so charmed by a young girl in her grandmother’s kimono, that I wrote to the administrator to say so, to thank them for the day. The person who wrote back turned out to be the charming girl’s mother! Which is always handy. When people praise me to my mother, I know she appreciates my daughter-ness. Filial success!

Hiroko replied, inviting me back for an informal hanami celebration. She is learning the ways of the tea ceremony herself, and I was guest of honour. The matcha was delicious, so lucky to have had two bowls (chavan), and the cake and sweets were all perfectly balanced.

I read a couple of my poems out loud to the five women present, and later, when it was just myself and Hiroko, we spoke of her own literary work - she is completing a paper on the ancient craft of kintsugi, the philosophy of which has long interested and intrigued me. Kintsukuroi in more recent Western philosophy is the idea that even something broken can be made beautiful, transformed by the gold lacquer that holds the pieces together. Why gold? Why such care taken over something broken? These are questions Hiroko is exploring and I can’t wait to read her paper. 

SPRING BIRD, FOR SHELAGH CHEESMAN

When sunlight 

comes my way, 

I can see 

the smallest bird, high up,

on the cherry tree; 

belly, beak and leaf.

Lose that light,

come storm and sleet,

how easily I forget 

to see,

with memory.

All is lost to me. 

Then turn to the listening ear,

and touch my hand to 

curve of cheek -

mine, or yours, either 

will do. Love goes on, 

invisibly. 

© Shaista Tayabali, 2019
(sharing with Dverse Poets Open Link Night) 

Today is the one year anniversary since my friend Shelagh Cheesman passed away. Shelagh loved spring, the blossom and the warmth that returned to her Raynaud's afflicted fingers. I miss her, I have grieved the loss of her, and I feel her guiding hand strongest this month. 

Our mutual friend Colette, Shelagh and I also shared a love of these doll necklaces that were sent by Meme, another lupus-pal who lives far away in Australia, but really only a heartbeat away by snail mail, and email, and her loving spirit. Onward we go, with the friends who take care of our hearts. 

A SWAN IS LIKE A SOFT FLUFFY PILLOW

I saw a swan sip the river today 

And I worried about plastic.
I was relieved when I saw the bread

Someone had flung over, enthusiastic.

I saw a counsellor today. 

Except he turned out not to be one. 

I am a psychiatric nurse, he said,

And you are not a problem. 

My kind of problem, he meant, 

and he meant it kindly.

No suicide for him that day,

And he was surely glad of it.

But I had been longing for a place to grieve, 

To weep my river of sorrows.

Instead I walked to the graveyard,
And paused beside the bridge;

I watched the swan sip, 
And sunlight dip,

On the swan’s soft fluffy pillow.

And I tucked my tears up, under. 

©Shaista Tayabali, 2019

Dverse Poets 

THE OTHER SIDE OF THIS

The life I wish to live,

lives on the other side of this:

Maribeth removes the cannula 

from the back of my writing hand,

but my nerves still remember Rachel’s

on the inside of my right wrist.

Seen or unseen, these veins connect,

mapped in despair together. 

Mind is the beast to conquer, they say.

Hubris, I say. Body holds equal sway.

Memories exist in the pockets of cells,

passing down the tales.

So nobody forgets. No body forgets.

And the mind is never tamed.

The life I wish to live 

lives on the other side of this.

Perhaps I live it in the wish?

© Shaista Tayabali, 2019

(On the one hand, I am privileged to be taken care of in an excellent teaching hospital by skilful doctors and deeply caring, efficient nurses... on the other... well, on the other ... is a needle in my wrist, a PICC line in my arm, twenty tablets needing to be swallowed... but if I may borrow a third hand - yours - there is also spring... and crocuses... and summer to come... if I am weepy for now, bear with me, as winter bears up till spring.)

(Gathering for www.dversepoets.com Dverse Poets)

CAMPYLOBACTER AND I

Who are you, bug of my gut? Why do you wish me to be your home? You have turned my body into a battlefield and I look nothing like a warrior anymore. I am the slain defeated soldier, wishing only for the earth to open and swallow her whole. 

Campylobacter. Another name acquired to add to the list. Did you know it is a common enough bacteria mostly found in poultry? Chicken specifically - factory farmed, sad toxic little chicken... but also the plastic packaging which contains the chicken, and any fresh produce which comes into contact with either. So really, just about anything can host the little devils. Many people in the UK population have had campylobacter chomp away at them for a day or a few days or a week. But the normal body expels the unwanted intruder ... 

Perhaps we should all be vegans but we have developed such a deep and passionate art for cooking throughout the ages and embedded in every culture and nationality, that to erase meat and fish for the sake of the occasional gut attack, appeals to a select few.  We know we contain bacteria within us - just as we ourselves once were bacteria... 

Then there’s your tricky antibody deficient, immuno suppressed lupus patient. 

I had mysterious bouts of sepsis several times in 2017 until this bacteria was finally discovered in my bloodstream - where it should not have been. This is supposed to be a strictly gut bug. We pelted it with IV antibiotics and thought ourselves in the clear. But all through last year I have been trailing behind a sense of weariness, an unwellness hard to define. Was my dosage of Rituximab too low? Too spaced out? Did I need a new drug added in? More steroid? 

I travelled to the East, and seemed on the surface to have managed miraculously well... but every evening and by nightfall I was close to tears with whatever it was that was battling away inside of me. As soon as I returned home from Singapore I went into an exhausted depression under my duvet, and thence into the grip of fierce abdominal pain. Was it my kidneys finally declaring nephritis? I even wondered if I’d had a mini heart attack, so intense was the painful grip.

The psyche of a lupus patient is a horrible fascination. For months now I have felt despair and entrapment at the thought of this being IT. I have always somehow freed myself from the idea that the future is bleak because I will always be ill... but this time around I seem to have less will, less reserves... 

Today is Valentine’s Day and my present is that the medical team have agreed to stop the three streams of antibiotics that were eradicating me with their toxicity. It will take time for my system to clear itself of these drugs ... but the PICC line is still in place so it is hard to believe such a time will come. It will come. Will it?

I could have waited to write an article when light and hope had replaced the nauseating struggle, but this is real too. This in the middle of the thing, this neverending ghastliness that is the nature of this life. Waiting for the energy of hope to pulse within. 

RED KOI, BLACK SKIRT

A radiologist rushes by
in a black wool skirt
splashed across with koi;
red fins, white bellies,
swimming in the creases
as she moves.

The skirt is from a tiny shop
in France; she says this sadly,
knowing she cannot satisfy
my craving for koi
beneath my own fingers,
in friendly wool.

I pass Fiona Sampson’s ‘Orpheus Variation’,
and travel up the long tube
to the topmost floor,
which tucks me away
from apheresis, and other humans,

and I swim
into the closed wards of the infected,
the diseased, worming in to join
the dark night of our souls.

But when the blood moon draws closer,
and blue Monday arrives, I arise
and begin to shed the creature that holds sway;
small sheddings are small victories, these days.
©Shaista Tayabali, 2019
participating in Dverse Poets Pub

(I thought about tacking on a different ending because the hospital did let me out, but only to reveal the next morning that they had found the bacterial culprit, so I haven’t swum to freedom yet. I have a cannula in me and nurses arrive daily to my house to administer antibiotics through a drip they set up. Something is being shed, I have to believe, or else the dark nights will claim me again...)