Thursday, 25 January 2018

THE MOON GAZERS

First their eyes met, then they danced, and then decades of moon phases (and poems by their daughter) later...


Two rabbits sat upon a hill,
one blinked sleepily,
the night was so still.

Suddenly the moon
peeked out between the clouds,
and the moon gazers, entranced,
counted out the stars.

There bounds Pegasus
and Pleiades, the beauty,
there Cassiopeia, Aries and Venus -

And here, bound to earth,
you and I, my dearest.

What more than love and blue skies?
What more than love, my dearest.



Happy Anniversary my beloved Perveen and Chotu xxxx

(poem included in dverse poets open link night)

Sunday, 31 December 2017

ROUND UP 2017

I've never done a round up of a year before... maybe a little hopeful contemplation as the year floats away that I did alright, I wasn't a complete disaster, love prevailed... but I feel like recording a few things for this last day of 2017. The brights and the shadows. 

The year started off with a flurry of rejections, which does rather set the spirit at a low hum of despair. But in amidst the form rejections, I had several personalised letters, which I have since learnt is an achievement in itself. Here is the most special among them - inspite of the rejection, I genuinely loved it.

Dear Shaista, Thank you for sending me Blind Wolf, Butterfly Woman and for giving me the opportunity to consider your work. I was consumed by your poignant, affecting story. I found it beautifully and truthfully depicted and it resounded with me deeply. You demonstrate remarkable courage in expressing your story, and I hope that you have found the writing process in some way helpful. Your attitude to your condition is truly an inspiration. However in spite of this I am unfortunately unable to make you an offer of representation. I am really concentrating on building up my fiction list, and while your story is incredibly moving, I am not sure how I would break it out commercially, with a mainstream publisher. The market at the moment is so competitive and publishers are being extremely cautious, particularly when it comes to acquiring memoir. However these judgements are always subjective and you may well find someone who feels very differently. Again, I very much appreciate having had the opportunity to consider your work and wish you all the best in finding the right home for it. Best wishes, ...

Then I had a rejection from the University of Cambridge to do an M. Phil on Vietnamese American post-war literature, and then I had an acceptance from the University of Cambridge to give a TEDx talk on creativity!




I think I successfully convinced everyone in that room that creativity can and must be taught, particularly to young children, and particularly at school. Perhaps I will share my speech another day. I didn't realise it wouldn't be recorded, but it was a TEDx salon talk, and those are more intimate. It was a special day, the 25th of January, Mum and Dad's anniversary, and as you know they are very much central to my creative life.

In February I was rejected (or rather not included) in (ironically) the Anglia Ruskin University TEDx event. I don't know how the event went in the end - it was inaugural, so hopefully it was a success. I was extremely fortunate to have been excluded because I developed kidney sepsis at the end of a lovely but hectic surprise visit from the Singaporean crew. Mum's birthday on the 10th of February was a wonderful time of celebration until right at the end, when I was bundled off to A&E, burning up, throwing up. Mum even wore mismatching shoes to the hospital, it was so muddled a morning.

Back in again with more infection at the end of March and into April... and then again in July and August... I had two PICC lines for two different infections, which took such a toll on me. And yet, while in hospital, I recorded a video to accompany my book for a crowdfunding platform called Unbound Publishing. When I was rejected from that I did feel quite awful. I spent September in bed for the most part. For World Poetry Day at the end of September, I recited poetry in the hospital chapel, which was very healing, and by the end of October I felt inspired enough by my summer experience of video making to start a vlog channel and recorded four wonderful talks with my friends Colette and Daisy on living with lupus. I was on radio in November reciting poetry and talking about hospital shenanigans, but that wasn't recorded on a podcast either, so hilariously the only two people who heard me live were the two people I told - Mum and Dad, the two people who listen to me every day, anyway!!


- And our beloved friend Victoria who drove me to the radio station and sat quietly, and supportively, in the booth beside me!

And finally on Boxing Day, I had a piece published in sisterhood mag, on my complicated and beautiful religious and spiritual life. Deeyah Khan, the founder of the magazine, and an extraordinary documentarian, had tweeted me earlier to consider contributing, and I am so glad she did... 

http://sister-hood.com/shaista-tayabali/half-parsi-half-muslim-full-woman/

We lost dear friends this year - our beloved John Haybittle, and two days ago, our childhood friend Vinit. We celebrate how wonderful they were, and hold on to each other more tightly. Tomorrow it will all be the same, and yet a little different. Happy New Year, my dear friends, whichever it is. 



Friday, 17 November 2017

THE BEND IN THE ROAD


We thought it would come quietly,
the final bend in the road;
we shored ourselves up, with
pots of tea, evening crackers
and Sunday nights in Downton Abbey.

Seventy-four years ago,
you walked down the aisle with me;
a pair of jaundiced eyes wouldn't keep
you from marrying me.

Sometimes the morning light
catches the emerald in my ring;
my fingers catch the chords of notes
you liked to hear me play.

Here we are, you and I,
a litte stuck today -
I, tucked up in our bed,
and you, in your room,
many miles away.

But the lamp is on,
and when tomorrow comes,
beside you, I will stay.


I wrote this poem last year for my beloved Mary on John's 95th birthday. These are wrenching times for Mary, because she is separated from John, who is too ill to live at home anymore. Five days after their wedding John left to be with the RAF, but then he came back, and then the children came, and then, and then... life... all of life. And then one day Mary met my father, who was a medical student of John's at Addenbrooke's, the same hospital I now haunt. And then years later she met my mother. More years passed. And then my brothers and I. I was fifteen and my life has been the richer, the more beautiful, the truer for her friendship. Lucky, lucky me. 

Sunday, 12 November 2017

BRITISH VOGUE, ADWOA ABOAH AND PRIVILEGE

Today the new cover of British Vogue under the new leadership of Edward Enninful was released. 


While many people have expressed pure appreciation for the choice of the model, Adwoa Aboah, some (the Daily Mail contingent, and others) have decided that this choice in model was too 'safe', she is too 'light-skinned' - Eddinful should have been 'braver', gone 'darker'. 

The concept of light skinned privilege is a very complex negotiation - and also very basic. People seem to forget the ‘one drop’ policy whenever convenient. But if you are black in any measure, you don’t get white skinned privileges. You are forever playing Double Dutch. Neither community will fully accept you, but one community will historically always keep you guessing as to whether you are accepted or not. Since that is no way to live, most ‘mixed race’ (a bizarre, misleading term because it implies a 'pure' race exists, which of course does not since race is purely a construct, and not a biological reality) or perceived light skinned people, will inevitably gravitate towards the people of colour they are also representative of. Barack Obama’s half whiteness was embraced by many white folk because he was an excellent human being but had he been less than excellent his blackness would have been the only perception. Halle Berry may look light skinned but she has experienced racism her whole life. I may be perceived as light skinned as compared to darker South Asians but I have also been described as 'coloured' and 'black'. No one actually aspires to whiteness - we all aspire to equality, to equal human rights, to equal representation in positions of power as well as ordinary positions of being a bus driver or a teacher. It’s all a sliding scale from the outside so who you are within is what you have to hold on to.



The idea that Enninful chose Aboah because she’s light skinned is laughable. They are both Ghanaian. Aboah is not just ‘known for being light skinned and having freckles’, she is an incredibly brave and outspoken person, who has battled addiction for years and finally created Gurls Talk, a space for young girls, especially but not exclusively in the modelling world, to be able to talk about things like drugs and self harming - these girls are totally unprotected and unchaperoned, especially when they travel, and many fall victim to all sorts of exploitation. Aboah is also bipolar and actively involved in the mental heath campaign Heads Together - here is a brief YouTube clip of her talking to her mother on the subject of depression...


So Enninful’s choice of Aboah is far more nuanced than the colour of her skin. I think he is giving her a huge platform because he believes her voice needs to be more widely heard.

Thursday, 2 November 2017

ON AGEING


I think I know this:
I could be happy at 80.

Or perhaps 81, 
When I am safely on board. 

This being in my thirties
Is neither here nor there

And waiting for forty 
Is a certain death.

Death to youth. I know this
Because I keep getting told this.

You are not young,
Anymore. They say.

As though I was curious
As to what I was. 

(c) Shaista Tayabali, 2017 
(Poetry prompt for Dverse Open Link Night


Today happens to be my friend Sylvia's birthday - one of those 'big 0' numbers that have to be faced down every ten years... Sylvia is a cyclist, a cartographer, a mathematician, a feminist, a gardener, a reader, a thinker - oh also wife, mother and grandmother but really, what has her age to do with anything? Her Sylvia-ness is everything. Sylvia and her delightful husband Colin live in a magnificent five hundred year old farmhouse, and each timber frame is guarded by Old Man Rayner, who watches over my friends with care and looks with equal care, possibly suspicion, at outsiders walking past his giant iron shoulders. 

Tuesday, 31 October 2017

HALLOWEEN GHOSTS CAN BE SCARY

My friend Colette and I spent a few hours earlier this month recording a conversation we had about life with auto-immunity, the complex relationship we have with language - the patient-physician dynamic as well as the social dance. I edited it, divided it into two parts, and posted it on YouTube.


Colette is truly brilliant at the jigsaw puzzle of piecing together life in broken particles - her mind sees connections and after 40 years of being in a health-wilderness herself, she is now able to offer extraordinary support to others in the wilderness. In my case, Colette offered up the term PTSD. I may never have applied that to myself but I can see now that Post Traumatic Stress is exactly what I suffer from. 

I had a difficult appointment at the hospital a few days ago. In August, while sick with a campylobacter infection that had spread into my bloodstream causing sepsis, my consultant visited. I had asked her registrar the day before about Benlysta, the first drug to ever be licensed for Lupus, and my consultant felt she needed to inform me personally that I was not sick enough to qualify for it. ‘You need raging disease to qualify’ were her words. Words familiar to me. I had heard her say them in 2008, during a hospital admission which included a painful lymph node biopsy. The drug in question then was Rituximab. I proceeded to become sick enough with the necessary raging disease in 2009 and have been on Rituximab ever since. Life opened up, I travelled, I finally did my MA and I wrote a book. I learned something of the language necessary to navigate this complex life. But I keep failing; it is never enough.


Whether I can or should still receive Rituximab is once again in question. Biologics are both expensive and in their long-term usage, an unknown. Exactly what it is doing to my immune system after eight years in subtle ways is as yet unclear. I was already in a shadowy place this year with the infections, four hospitalisations, PICC lines and now this uncertainty while my body fragments once more on old lines. Not knowing once again what the future holds means I cannot plan for a Christmas trip to see my brother in Singapore. It means battling depression and anxiety on a daily basis. It means walking inexorably towards getting worse while having to accept ‘worse’ is only so in my subjective opinion. Halloween’s ghosts come in many forms. 

Thursday, 28 September 2017

CROSSING THE CLOCKS TOWARDS HAPPINESS




Happy National Poetry Day! I recited two poems at the Addenbrooke's hospital chapel, which Mum recorded (albeit slightly shakily). It was fun to see the main entrance to the hospital festooned with lines of poetry, written in chalk on the cement and strung up into bunting flags. It was not much fun to witness the terror and repulsion of some people when they were offered poems. 'Would you like a free pome?' I asked nicely, naively. 'NO!' was the short sharp response. 'Yikes!' I may have said. 'Any reason?' 'I just hate it!' 'Er...right,' I stammered, 'since when?' 'Since they rammed it down my throat at school.' 'Fair enough,' I produced, cravenly, and skulked back to my friend Kaddy Benyon, who had warned me. She'd been at it for far longer than I. Never mind. The reading itself was lovely.

It's strange the way life circles. The first time I visited this chapel, I was in a wheelchair. That was eight years ago. And today, an extraordinary thing - after the reading was over, a woman in the audience said she recognised me from eight years ago, from my time being incarcerated on the Infectious Diseases ward for months. She said she was glad to see me walking.

Also, my surgeon came - which was very supportive of him - and immaculately timed to perfection, catching the poet before me, me, and the one after me, who happened to be the last poet of the day. Must be a surgeon's skill.

Wednesday, 27 September 2017

POETRY READING: ADDENBROOKE'S CHAPEL

Thursday 28th September at 12:30 - 1:30 in the Addenbrooke's hospital chapel. Are you free?
Oh, I haven't told you why...

It's National Poetry Day, and Addenbrooke's Arts has an ongoing project called Taking Note: Poetry in Moments, during which an emergency poet, Deb Alma, will be on hand to hand out poetry as prescription in her 1970s original ambulance, poems on postcards will be handed to you or placed on your coffee tray at Costa, and yours truly will be reading her poetry along with several other poets including Kaddy Benyon, Eve Lacey, Jo Shapcott and Rebecca Watts. 

I've always wanted to be part of the artistic life at Addenbrooke's so this is really one of my dreams manifesting into reality. I hope it will be a fun day. I shall tell you all about it when it's over...

Thursday, 21 September 2017

WHEN THE STORM IS ABOUT TO BREAK

Carl Brandien Hurricane at Tarpon Bend, September 15, 1945




That rumbling rolling
Coming from thunder sound -
The storm is about to break.

Open the window
And the raindrops wet me,
Forehead, cheek and chin -

Look down to write you
Into a poem, and lightning
Flashes beside me.

The puddles are jumping,
The willow sashaying,
And then just as quick, everything stills.

I turn away. Light candles.
Run a bath of lavender
And lily scented froth.

Sometimes you fear it,
Sometimes you don't -
The thunder rolls back for her audience.

(c) Shaista Tayabali, 2017 for Open Night at Dverse Poets 

Edgar Degas Woman in a Bath Sponging her Leg c.1883

Tuesday, 5 September 2017

PICC LINES AND PENGUINS


Evening. The sun has set, I think. The day has faded away, and I haven't really paid attention. The twins left this morning en route to the airport and the next chapter of their life. I, who have been on a rollercoaster month of rocky infections, antibiotics and hospital admissions, feel jet lagged. Woozy with tiredness, I want to sleep for days without hours. But keeping time with the clock, they say, is important.

September is here. I had a birthday. My mother travelled to Vancouver to be with her two brothers at a wedding, and returned.


I had two PICC lines inserted and two PICC lines removed. Today was the removal of the second. My arm doesn't feel free yet. Still weighted with the memory of discomfort, it will take a while for the entry point wound to feel healed.

Other things will happen this month and the next. But until then I am going to crawl away and hibernate. Until then, here is a picture of me in Ellie's penguin hat, sitting, tube-free in the hospital Jubilee Garden...