Friday, 27 March 2020

WALKING WITH DAD THROUGH A TIME OF UNCERTAINTY

Over the course of this week, beginning Monday 23rd March, I have had a swathe of texts from the NHS Coronavirus service. The very first one instructed me to stay home for 12 weeks and this morning’s told me to make sure I phone a friend or relative everyday. I’m phoning in this way, through my blog and vlog.

The willow and cherry trees sandwich our home and I try to keep my mind steady. In some ways life is unchanged for me, and in other ways everything is new because everyone else is experiencing it for the first time - this global disorder to the sense your life made to you. I have experienced a microcosm of this disorder every single day for the past twenty years... and still make little sense of it.

So I walk on ... as you do... taking one step at a time.... que sera sera ... except we don’t really believe that, or adhere to it. We don’t want it to be what it will be. We want to make it what we want it to be. Who wins this? The men in power keep speaking in war analogies. No room for softness and gentleness even in this time of great vulnerability. My walks with Dad can only be described as gentle and vulnerable. Especially now that I can’t manage them anymore. I have a heavy cold, cough and sore throat, have re-started antibiotics on the recommendation of my immunologists and need to stay away to protect him, and Mum, for a while.  I’m glad we walked when we could.

Saturday, 21 March 2020

CO-VID: THE CONSIDERATE VIRUS?

Am I naive to call it that? Probably. But I would rather be naively hopeful during a global pandemic than be destroyed by fear of a thing I exist with daily, hourly. And that is extinction by infection. Talk about unromantic language. Some English consonants are not the prettiest sounding.

There are cars whizzing past, still. And the sound of conversation, laughter and once, a child crying next door. My mother is chopping vegetables for soup tonight. And my father is doing his floor exercises. On Friday, schools closed their gates around Britain, following suit behind most of Europe. The supermarkets are buckling under the strain but community morale and practical solutions are being invented by a world used to being superhuman, charged by motivation and productivity and consumption. Oh dear. More of those consonants.

Let’s steer towards the sea. And Venice’s clear waters.

On Monday, I had my six monthly dose of Rituximab, which depletes my B cells, and takes me on a briefly intense chemotherapy journey. Then it passes. But the meeting place of a new virus, further immunosuppressive drug therapy and continuing chronic illness is... interesting. This slow paced, enforced self-isolation life? This is my jam. This is where I dwell as a matter of course. This place is never quite comfortable in a world of motion and forward full speed ahead-ness, but it is home, for me. Am I better prepared than you for the quiet life? Perhaps. Well, except for the extinction by infection part.

The post and delivery men come and go. Retired NHS staff are returning with sleeves rolled up in solidarity. The birds were riotous earlier this week, but sounded a little subdued today. Humans, eh? they roll their eyes at each other. Just can’t tell what they’ll be up to next.

Are you coping alright? Is the quieter pace of life easy for you to adapt to? Or are you among the population who are busy doing at home work-outs, creating community cohesion networks, magazines, reading groups? I feel tired just thinking of the ways in which people are stopping, slowing down and finding ways to ‘do things’ in a time of government mandated no-doing. Perhaps this is because I have had a winter of respiratory infections already, and I have almost no energy to worry about a virus that seems to be making most people very considerate. But I gathered just enough to upload a vlog to my ancient channel, in case you want a little glimpse into my life! My skills are desperate, but there's always a chance I'll get better :)




Thursday, 6 February 2020

FOOTSTEPS OF A MUNTJAC

From June to June I don't know who I am,
though I walk the old familiar paths, 
tracing and retracing into muscle and sinew

Who are you?
Who are you?
Who are you?

I am a Pokemon hunter
with chronic illness and no car, no invisibility 
cloak to protect me. 

I am a daughter, but not a mother.
I am a Queen of this, 
but not that.

I am a traveller who stays still for so long
she forgets she once walked 
among Inukshuk, and between redwoods. 

I am a reader who ceased to read.

Instead, I watch a bright screen move me
while my eyes and brain exchange 
the same, tired greeting

Here again?
Here again.
Here. Again.

A muntjac looked across the field 
at me, not trusting the scent of me.

We share this earth so cautiously. 

(c) Shaista Tayabali, 2020
prompt from Dverse Poets, ('What day is it anyway?'); image from Wildlife Watch: Forest of Dean
inspiration: my friend Helena, who walked in the garden with me, sunshine on our faces, muntjac footprints beneath our feet, and the wild world of hope blinking in the possibilities (Helena reminds me... I keep forgetting, am too tired, too sick, gripped by infections and fibromyalgia.) 


Friday, 17 January 2020

GROUNDHOG DAY (MONTH, YEAR)

It’s 2020! Which matches neatly for anyone who likes their numbers mirrored or believes in numerical significance. I think I belong to that crowd ... like when I glance at my watch and see the time is 17:17 or 23:23. It happens so often I take it in my stride as one of those natural oddities. So far so good, or so meaningful.

But does anyone really experience a seismic change for the prosperous? And it usually is prosperity (or a pleasant change in the fate of one’s circumstance) that we are hoping the clock will provide on the twelfth beat of the midnight hour. Luck be a lady tonight. Lady, be lucky tonight. Be mine, lucky lady. Be mine, luck. And somehow sandwiched between one year end and one year start, we hold faith on an inbreath and release, eventually, into the real, once again.


What was real for you? For me, it was the influenza virus. How do you know you have the flu, asked the infectious diseases registrar in the emergency department. How did you know you had the flu, asked the immunology consultant on the ward, the next day. I can taste it, I said. It has a certain flavour, an aroma, a texture known to the memory of my cells. (They were listening to me, thinking, ‘Mm-hmm. Sure, kid, gal, woman. Whatever you say.’) Of course, I knew I had the flu because my nephew brought it on a plane from Singapore. I’m going to call you the NOD, I told him. The Nephew of Doom. Dang it Shai, thanks a lot, said the nephew of doom, taking it on his small chin. He made up for it by reading me several pages of Eva Ibbotson’s ‘Journey to the River Sea’. He read most of the book by himself, which pleased his aunt enormously. He knows about Eva. That she had The Lupus. He's not happy she died of it. But he understands she matters to me. I haven't introduced him to Flannery O'Connor yet... I'm not completely merciless.


One month has caterpillared across the seemingly endless bouts of coughing, fever, vomiting (oh, you know about the 'flu? I shall desist from further details)... my immunology consultant wants to see me again on Monday. Yesterday I had a heart monitor fitted to check on its speedy action (we in the biz call it tachycardia) and a few days ago, I had a ghastly paralysing attack of fibromyalgia. 

Dang it, 2020! To quote my precious nephew of delight. See, Raf? That works too. NOD. Nephew of Delight. Also, Nieces of Delight. All four of my delights are just that. 'Don't eat me!' they say. 'Cook me!' they say. 'Are you listening to me?' they demand. 'Copy me!' they command. Alright, 2020, if that's all you have in store for me, along with this writing m'larky, I'll take it.      

Wednesday, 27 November 2019

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... 

Tuesday, 26 November 2019

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.



Friday, 4 October 2019

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.










Friday, 30 August 2019

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.

 

Friday, 9 August 2019

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 ... 

Wednesday, 29 May 2019

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)