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...


Wednesday, 30 August 2017

SLEEPING BEAUTY (TRIES TO ESCAPE)

You know how all of us, or is it only some of us, are plagued by and plague each other by asking the perennial question, 'So, what do you DO?'

What do you do with your life? Not who are you in your life. Not how are you in your skin? Your mind. Your heart. But... where in the cogs do you fit...

A peculiar character like myself with the odd wolf disease is bound to feel on the defensive about what she does, because mostly she doesn't. 

But when I'm in hospital, you would think I'd be let off the hook for a bit.

I have been hospitalised four times this year with persistent infections. I've become too immuno compromised by the monoclonal/ chemo therapy; time for a break from it to give my immune system a chance to recover. The reality of such immunological machinations is, not surprisingly, that I am very fatigued. And need, and must, rest. 

And yet, the number of times I am teased by medical staff about sleeping in, in the mornings, is baffling. Does every other patient rise and shine, stretch and leap out of their narrow white beds to... do what? I was moved from my fateful room on N2 late last Friday evening. I am now in an enclosed room, with negative pressure controlled air vents circulating a draft eddy of mechanical air. I am on heavy antibiotics... and yet... 'sleeping beauty' they call me! 'Every time I've seen you,' sez the male nurse today, 'you've been sleeping!'
'What should I be doing?' I ask. 'Inventing a new gadget?' 


So I am trying like mad to occupy myself - painting Pooh in watercolour and pastel. Writing this blog post. Trying to look extra busy to account for the bizarre preoccupation of society even on the most isolated Infectious Diseases ward to DO SOMETHING DO ANYTHING JUST DO. SOMETHING. 

'So,' asks my consultant when she visits, 'what have you been up to in here? Writing anything? What are you working on now?' Gaaaaah 🙈🙈🙈🙈🙈

So I did do something. Only it was accidental. I pushed open the heavy door to my room, stepped out, ostensibly to discover when my next antibiotic dose was, and had a quiet mooch down the long unfamiliar corridor ahead of me. We are eleven beds on this ward, locked away from each other. I made it to the end of the corridor, and saw a portrait of Mary Seacole on the wall. Hello, Mary! 

I had reached the fire door right at the end, and while contemplating Mary, I leant against the door. Suddenly, a wild alarm set off, ringing around the ward. I put my hands up in true Crime Drama fashion as two burly male nurses hefted their way towards me. 'Sorry!' I bleated, and slunk away from the crime scene. 

'You won't be doing that again,' sez the same male nurse to me. 

Honestly. I just can't win. Back to bed, I think...

(P.s. In case you don't know much about Mary Seacole, the Jamaican British nurse who gave succour to many during the Crimean War, look her up. Now she really did DO many, many things.)

Monday, 28 August 2017

VERILY, WITH THE DAWN COMES HER BIRTHDAY

When we were little and Dad was teaching us the surahs, he encouraged my brothers and I to choose a favourite surah, one we could feel we personally belonged to. I chose Alam Nash Rah - not knowing anything about the dark nights that lay ahead nor the dawn that would bring ease. I just loved the musicality of the recitation, and the repetition of the line, 'Verily, with hardship, comes relief...'
ألم ناش راه لك 
و و دانا أنك وازرق 
... فى إن مال أسري يسرا 
إن مال أسري يسرا 
To this day I think of the surah as 'mine', not least because the pattern of my particular life has fallen into the poem of dark heartsore nights and gentler tender dawns.


Mum and I were supposed to travel to Vancouver for my cousin's wedding. Rizwan and Angelina were bringing the mice to keep Dad company. And then I started to spike fever. By the time I was recording 38.4 degrees I knew jumping on a plane was looking less than likely. For five days, the Infectious Diseases team treated me with IV antibiotics and, with no fever in sight, discharged me. A day later I was spiking fever again, and the day after someone from ID called to say the microbiologists had picked up campylobacter in my bloodstream, an oddity, and readmitted me through Accident and Emergency to the exact ward, the exact side room into which I was incarcerated in 2009 from February to June - the place that inspired my blog to become what it became, the place that forged the person I am today, whoever she may be. 

I was admitted the night of my birthday. Rizwan stayed with me until just past midnight to wish me and hand deliver the cards written by my twinnies, and later that night when Singapore awoke, I had a video from my other munchkins singing me happy birthday in English, Mandarin and Malay! Angelina baked me a three layer chocolate cake with cream cheese frosting and the girls decorated it with sprinkles... 






Meanwhile across the oceans I practised a little art of deception - we had all chivvied Mum to get on that plane alone. You can imagine her reluctance at leaving her daughter in hospital. While I was being readmitted, while the IV antibiotics were being fed through me, faraway on a hilltop in North Vancouver, a beautiful Parsi engagement ceremony was unfolding amid garlands of flowers, and pretty lanterns anointed my uncle's home. I'll just tell them tomorrow about the hospital thing, I thought, so long as they don't video call me!!

Time enough, time enough. Not always, but sometimes, there is time enough for everything we dream about, hope for, and even, are surprised by. Rizwan and Angelina bought me a beautiful salwaar kameez intended for the wedding, but when Angelina told me to wear it anyway in hospital, I did...



Irfan and Theresa sent me an eye mask with headphones cleverly attached so my photosensitive eyes are protected from glaucoma glare, and I can escape into Philip Pullman's world, into Georgette Heyer and Marian Keyes' worlds... 

I've had two PICC lines surgically inserted in a short space of time, so I feel tender and 'cloudy' to use Clive's description of me. We might be doing a poetry reading together late next month if needles and toes align. Until then, a cheery cloudy farewell from N2. Home soon, I hope...