Thursday, 19 April 2018

NOT A WARRIOR: A TRIBUTE TO SHELAGH CHEESMAN


Not a warrior. Just a woman.
There is nothing 'just' about being a woman.

You wore purple slippers while incarcerated
In the place without colour.

You noticed the small failures, and sought to
Correct the large ones.

You housed two tortoises for thirty years,
And built another home for those of us

Wandering in the bewildering wilderness
Of lupus. Systemic lupus, that uncontrollable beast

That ropes us into the pen of our lives,
Trying to tame us into submission.

Not a warrior. Just a woman.
Who wore her height stylishly.

Who ate her cake ravenously.
Who lived her truths wisely.

But not without humour. Never
Without humour.

Are you here now? Like I asked you to be?
Or have you already flown far, free

To conquer new lands, unite with old friends,
Your mother, who left you too soon.

As you have left us, too soon.

Shaista Tayabali
April 16, 2018

linked with dverse poets



Shelagh Cheesman was the Chair of the Cambridgeshire Lupus UK group, the champion of many, and my dear friend. Along with our friend Colette Barrere, we formed part of an informal club called The Chloe Club, wearing our shared necklaces, lunching at the Tickell Arms, breaking down our encounters with the medics into humorous morsels. 
I can't say words like 'I'll miss her' because they sound too banal. And anyway, she doesn't seem to have left me. Yet.
I recited the poem above at her funeral service on Monday 16th. It was a poem she commissioned herself two weeks before she died at Addenbrooke's. She unknowingly gave me the title of the poem with this quote: I don't like the word 'warrior'. But I like the word 'positivity'. 


The not-so-formal photo: Shelagh (L), me, Coco (R), post Tickell Arms lunch

Thursday, 22 March 2018

BANAZ: A LOVE STORY

They disappear the girls,
But it's the men who blur, for me.

Whose father, did what, when,
With whose aid, why - I care less

About them. And only about you.
You remain. You and your name

Haunt me, but not as ghostly mystery.
There was nothing insubstantial

About you. In fact, there was so much
That it has spilled over, across time,

Crossed the bridges of your world
And mine, so you live with me now,

Swimming in the river of my thoughts.
I hope you don't mind.

(c) Shaista Tayabali, 2018

They wanted us to forget her. They tried to erase her, in a suitcase, strangled and abandoned, buried. No, evil, you did not succeed. We honour her, still. Her name is on our lips, in our poems, crossing borders on the wind. Banaz Mahmod. In 2012, Deeyah Khan and Andrew Smith documented her story in a film they titled Banaz: A Love Story. She was born 16 December 1985, and killed 24 January, 2006. She was Iraqi Kurdish. She lived in Wimbledon, London. And she fought to save her own life.  
(poem shared via dverse poets)

Wednesday, 21 March 2018

HAPPY (SUPERWOMAN) NAVROZE!!

It is the spring equinox today, and all around the world Parsis, Zoroastrians and Iranians are celebrating Nav Roz, or No Ruz, which translates to New Day. But also, following Celtic and Saxon tradition, the goddess Ostera is celebrated by Wiccans and druids at Stonehenge, the goddess Isis brings rebirth to Egypt, Passover includes a thorough spring cleaning in Jewish homes, and in Russia, Maslenitsa is observed as a time of light, and a return to warmth. 

An article I wrote at the end of last year was recently reprinted in the magazine 'Parsiana' with an illustration of myself as Zoroastrian superhero, with a heart of fire, which is one of the coolest things that has ever happened to me. I plan on having a giant poster reproduction of it to remind myself on lost days that I have a heart of fire. Thank you, Farzana Cooper, fabulous illustrator!


In case you missed my article 'Half Parsi, Half Muslim, Full Woman', I am including it in full here...

HALF PARSI, HALF MUSLIM, FULL WOMAN


‘Name?’
I say my name, in full.
‘Date of Birth?’
I say my date of birth, in full.
‘Religion?’
‘Half Parsi, half Muslim,’ I say. In full.

She looks up at me. I am standing in the classroom, as each of us do when the roll call reaches our letter in the alphabet. ‘How can you have two religions?’ she asks. Maybe she is smiling, maybe she isn’t. I cannot remember because this process occurs every single year, on the first day of school after the monsoon holidays are over. ‘I don’t know,’ I say, although I do. I have two parents. And two religions. 

‘What is your father?’ In India, this is quite a common way of asking which religion you belong to. ‘What are you?’ begins with this classification, if your name doesn’t already ‘give you away’. ‘My father is Muslim,’ I say. And watch her write it down. I protest. How young I was when I began protesting is unclear to me. All I know is that by the time I was ten I had already decided I'd had enough of my mother’s religion being erased from my identity. For that is how I perceived the act of a figure of authority deciding for me that my father’s religion was the defining classification of my personhood.

I am a feminist. I came to an understanding of this word first through the writings of Alice Walker and her fulsome, inclusive definitions of womanist. But that was at university. So there was no word for what I felt at the thought of the denial of my mother’s religious identity. In India this is more than which place of worship you are allowed to enter – it weaves into every aspect of your life - your birthing ceremony, your childhood years, your teenage relationships, your marriage, your divorce or inability to divorce, and then the decisions that will affect your own children’s lives. My mother had a spiritual, emotional and psychological crisis when she fell in love with my father, because she had always assumed she would marry a Parsi like herself. Parsis are now a tiny community: a thousand years after leaving Persia because of Arab persecution, and of sheltering in India under the premise of never proselytising the religion – Zoroastrianism – we number less than 60,000.

You notice I have only just mentioned the ‘other’ religion. Indians know that to be a Parsi is to be Zoroastrian in a way the world does not want to know that to be Muslim is to be Malaysian, Kurdish, French, Moroccan, Norwegian, Somali. Naming ‘Zoroastrianism’ has only become a reality since we moved to England. A non-reality, ultimately, because no one has heard of Zoroastrianism. Well, unless you happen to be a bonafide Freddie Mercury fan, or you are a Professor of Iranian or Avestan Studies. The Jehovah’s Witnesses who used to knock on our door heard ‘Rastafarian’ every time my mother opened the door, and explained she did have religion in her life.

What was my Parsi mother’s greatest fear when marrying my Muslim father? That her children would be neither one thing, nor the other. Where would we belong individually, or as a family? Nowhere, she feared. And in part, her fears proved of substance. When my grandfather died, the Zoroastrian priest would not permit my mother to enter the sacred area where her father lay, wrapped in white muslin sheets, ready for his sky burial. She had been made impure by marrying outside the community and the pure land was no longer available to her. His cruelty broke her heart.

We make our choices. One day, when the need to visit the fire temple and light aromatic sandalwood became too great, my mother drove all of us to the agiary. The sign outside clearly stated, ‘Only Parsis allowed.’ My father prepared to wait outside the entrance. My mother, my younger brother and I began to troop inside. One small figure was missing. My older brother, clutching our father’s arm, refused to leave his side.

We make our choices. Are you Muslim or Parsi? What is your father? So when I was ten I placed the secret of my heart upon my mother’s palm. I knew no one would ever order me to prove myself a Muslim. If they did, couldn’t I simply burst into ‘Alam Nash Rakh Laka Sad Rakh’? Hadn’t my mother painstakingly taught herself Arabic so she could in turn teach us the calligraphy that would forever be written upon the scripts of our souls? Secure in my Islamic and Arabic traditions, I wanted to ensure my Persian Avestan traditions. There was one formal investiture and it was time conditional. Parsi girls may only ever enter the Zoroastrian faith through the navjote ceremony before we begin to menstruate. Oh that gatekeeping, so beloved to the male priestly communities across the globe, across time. Blood, the river of life, which runs gender-binary free through all human veins, suddenly turns into such filth that God himself would forsake us. He would be Himself here. Herself would merely commiserate over the monotonous banalities, send waves of abdominal healing and draw us ever closer.

It didn’t make much difference and it made all the difference in the world. My Parsi-ness, my Zoroastrianism, remains invisible, the secret I placed upon my mother’s palm. Remains the secret of my heart. My delightful father, who I worried would feel betrayed by my deliberate choice, was only moved to tears that his daughter felt so deeply about her relationship to the liminal, the mystical unseen ever-thereness of the spiritual world. I pray, as he does, in surahs and in gathas. A thousand years ago, his people may have persecuted my mother’s people. In me, persecution will not be internalised. Love made its decision so firmly, so deeply, that surely some tiny bat squeak of an echo is even now ricocheting back in time, to press my secret into the palms of forsaken hands. Here. Remember this. Love is a choice, waiting.

(first published in Sisterhood mag, Dec 26th 2017)

Wednesday, 28 February 2018

THE WINTER'S TALE

It is almost March. Half an hour to go, and we are in the middle of a snowstorm. My toes were frozen in the car a few minutes ago but our lovely warm house is heating me up nicely. In 27 countries around the world, across 927 screens, audiences just witnessed Shakespeare transformed once again into a different mode of art. Ballet this time. Our auditorium in Saffron Walden wasn't full because of the snow, but for those of us who were able to attend the screening, a cup of hot coffee or a glass of white wine eased us into our seats. Some of us may have had a chocolate brownie as well... hey, it was gluten free! Surely that's healthy?
Ryoichi Hirano burst on to our stage (well, our screen) and we were, to a woman, transfixed. His presence, his beauty, his actorly ability to transmit jealousy (the most potent of our emotions?) was unrivalled by any of the other dancers, even though every other dancer was obviously perfection embodied.


The youthful delights of spring and first love in Act Two contrast with the winter and storms of imagined betrayal in Act One. But Ryoichi disappeared and so Act Two was a bit meh for me. I mean, amazing, of course, but I drifted... do you drift when you watch the ballet or the opera? Or while listening to classical music? I am often distracted by the presence of all the other minds in the room, bodily with me, but each of us entering our emotional worlds, separately.


I was glad to return to Ryoichi in the final act. Hair whitened by grief, he was still magnificent, and when Hermione, the wife he thought was lost to him, is revealed to him in a dance of forgiveness, I felt almost as shocked as he was. And glad. I had missed Lauren Cuthbertson too - the ballerina who co-created her own role. A statue coming to life wasn't the only moment that stunned me - a doll masquerading as a baby, with arms and legs moving (ah, modern technology) almost made me miss the bear that wolfs down a poor courtier...


In the outside world, snow flurries awaited us, but the thrill of the performance had us on a high long enough to grab a frozen selfie... I hope you are all keeping warm and finding something to smile about. Google the gorgeous Ryoichi!! Or if such superficial things as a beautiful Principal dancer don't appeal, read Shakespeare - the ballet made me want, made me need, the words that began the dance.


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.