SHAISTA'S BOOKS

This year begins the sixth year of my blog Lupus in Flight. Six years! I have never been so conscious of time's passing and her markings as I have this year. It feels a little breathless all of a sudden. It feels as though everything has already happened. Everything that truly matters is already in place. I was a curly haired child with goober glasses only yesterday. Tomorrow my nieces will turn thirteen, my cousins will celebrate their silver and gold anniversaries, my school friends and I will look into each other's eyes and shake our seventy year old heads in wonder. How? When? we will say...

My body hurts today. I stop, breathe, look deeply for the site of hurt, but I can't quite separate it. Hurt is always difficult to isolate. Remember the scene in Amélie when the little boy's marbles, hard won in the playground, burst out of the pockets of his uniform and to his horror, roll away? Never to be gathered. The best moment of his life becomes the worst, the unforgettable tragedy. That's how it feels, sometimes. All my precious marbles are in place, tucked safely into pockets of my soul, but my body's cells and organs are threatening to tear the seams, spill everything out. I rely on you to remind me we are all connected by the red thread and nothing that once was found can be lost.

So it is with my books. The last time I read a book all the way through in a few sittings was in 2012, at the start of my Masters. The Brief Wondrous Life of Oscar Wao by Junot Diaz, in case you were wondering. Since then, another glaucoma operation has put paid to my ability to read with any comfort at all. I can still read but I find myself picking at the tops of books, first chapters, beginnings... And then hurriedly gathering another to me. I have read so much and want to re-read so many, but there is always more and more to read. Social media is battering away at my eyes with its continuous streams of articles. All so interesting, so much entirely unnecessary. I must choose between this and that, but which to choose? Either I disengage or try to keep up.

Stop the clock for a moment and celebrate what you have read, Shaista, is what I tell myself. So a week ago I started a new blog - a library is what it intends to be. A reference of books I am reading, have read, crave. The title is simple - Shaista's Books - no Latin words here. Just a Persian one. I have already written four posts so will you stop by and take a look? The posts will be linked to the top right hand corner of this blog so you can always access the other blog. I am often asked what I'm reading or if I have books to recommend; the new blog is the beginning of my answer. At any rate, it's an experiment, just as this blog once was!

HOW TO SURVIVE RITUXIMAB

1) Do nothing.

2) But when the drug, which makes your heart and mind race, wakes you up before dawn, lie there and hope for sleep again.

3) When there's absolutely no hope, totter out of bed into the kitchen, scrabble around the fridge and settle on a virtuous carrot.

4) Wash the carrot down with a few ginger biscuits, a glass of water and several white tablets. Remember you still haven't renewed your various prescriptions, promise yourself you absolutely will attend to it later and then forget all about tablets by

5) finding the most mind numbing documentary on Netflix. It's called, say, 'The Queen of Versailles' about a rather grimly mismatched couple determined to build the biggest, brashest house on American soil. You will retain nothing later except a solitary fact about the real Versailles almost bankrupting France with its gilt and glory. This from google and not the documentary.

6) No fever or tachycardia yet and you float about between bed and kitchen, eating noodles, watching rain turn to sun, and wondering why you aren't simply stepping out of your little house and walking the half hour to your nieces, one of whom has taken to saying, 'Shai! gone!' with a sad little flick of her hand.

7) At 4 in the afternoon, you have a high point of wellness. You steel yourself not to get dressed or put your contacts in, but to sit, still pyjama clad at the open window, sun blazing into your half shut eyes, drinking coffee laced with syrup and two Jaffa cakes melting as fast as you can eat them.

8) By half past five, sun turned to long shadows, you are in bed with a creeping temperature, a steady marathoning heart and a throat that burns with a thirst you cannot pacify. In the doorway, an old fashioned tape player and Catherine Alliott's rural comedy A Crowded Marriage. A fox has decapitated Cynthia. Not the heroine. The chicken...

9) You think about washing your hair.

10) You listen to the birds.

11) You write a blog post about how you survive Rituximab the wonder drug. The cancer drug. The lupus drug. The soon to be Parkinson's drug. You think about cupcakes, not the cake but the frosting. And washing your hair. And how quiet it is because the tape needs to be changed to Side 13. You take a breath, prepare to peel the blankets off your curled up legs and brace for cooler air. There will always be more tea, hot buttered toast and you will

12) begin again.

BLOSSOM ON GREEN GABLES

A week into April and it is beginning to look a lot like summer might, just might, roll her majestic skirts into England.
It has been a difficult year for me so far, and I can't say it has become any easier, but a few excitements have come my way and those have distracted me from the meaner intent of the two warring diseases at hand.

It hasn't been the easiest of times for my father either. Sometimes the endless darkness catches up with him. En désespoir, he decided to listen to audiobook versions of Harry Potter and Anne of Green Gables. The Potter hasn't really held him, although he gave his best attention to the understanding of Quidditch. Anne of the gables, the green gables of Prince Edward Island? Now she has of course enchanted him. Suddenly, blossom, and the return of my father's smile. Still a little hesitant, but there is hope. There's always hope where there's Anne Shirley…

This evening I reminded myself of a loyal dog awaiting her beloveds. I kept scurrying to the window to check whether a taxi had drawn up. Not yet. Now? Not yet... The taxi containing several precious bodies of Brother, Sister, Twin Niece 1 and Twin Niece 2. It's the sort of thing Anne was always doing… waiting for Matthew to arrive, waiting for Marilla to decide she didn't mind a girl after all, waiting for Gilbert to wake up and notice the red hair was auburn now. Definitely auburn...

THE EXPERT OF SMALL THINGS

Picture Cambridge on a sunny morning. Here, this will help...

Imagine arriving, not at the entrance to an imposing college courtyard but a court nonetheless. Imagine being greeted by your favourite surgeon and feeling perfectly at ease as you climb some stairs with him by your side talking about your recent trip to India...

Imagine almost reaching the top of those marble stairs and being dazzled, not by the (really quite cool) ceiling architecture, but on finding the room packed full of strangers, all sophisticates in the field of neuroregenerative science expecting you to present the Human Face. 'Just a handful of people in jeans' was how The Blue Eyed Surgeon had described the event to me. I turned around and pretended to flee down the stairs...
The focus on this year's course at the Cambridge Centre for Brain Repair is on inflammation and I was one of the patients interviewed - the other was a man living with Parkinson's Disease, whose life story included surviving the Gulf War - if you can describe developing Parkinson's as survival. Apparently the military have taken partial responsibility for what is believed to be a result of chemical nerve agents deployed - I didn't realise almost half of all Gulf War veterans are suffering some form of multi-system illness. I thought the soldier was a hard act to follow. He had a DBS in his skull! (If Keith hadn't leaned over and explained what a Deep Brain Stimulator was, I wouldn't have known either).
Prof Martin introduced my case, asked me on to the stage to elaborate on life with SLE, and then presented a fabulously grisly series of images and video footage of the various operations we have endured together (at opposite ends of the knife and scissors). I realised that it was the first time I was being given the opportunity to weave glaucoma and lupus into the same conversation. In clinical environments I am usually expected to siphon off the relevant aspects of my case to the particular departments. Here, I could be whole for a while.

When the floor opened up to questions, a man at the back of the Cripps Court auditorium asked me a delicious question about the marriage of living with chronic disease and my life as a creative writer, which gave me full opportunity to be my poet self. In fact, through the course of the interview, I found myself mentioning the fact that I am a poet several times to my own surprise. The word kept falling out of my mouth. How have I coped with life endangering and sight endangering diseases? Poetry! The gift of finding beauty and connections - the gift of seeing more than what is visible or tangible or even real in the most concrete sense. It is an unreal thing to be sick all the time. Unreal to have been contemplating your mortality since you were a teenager. I can't begin to imagine how I would or possibly could have unravelled my life without literature, art and poetry.
I thanked the stranger for his lovely question. Later I learn that the 'nice man at the back' is only the head of Stem Cell Medicine at Cambridge - Professor Robin Franklin.
Yes, I'm name dropping! What of it? And yes, I took a selfie before I left the house - because who doesn't?

NIGHT OWL FRIEND

(for Lola Roberts)

If I could believe
this was fated,
each hour, each act -

infinite mistakes,
all carefully counted,
I might relax

and spin lazily
in my own orbit,
name my moons

and be fearless.
That was ever the plan
from the moment

I didn't die.
Or maybe long before
my mother named me

Shaista -

when I was a twinkle
in the sky.
Do parents still say that?

I believed it.
I believed I was a star
fallen plucked precious

jewel. If I could believe
then,
why not now?

© Shaista Tayabali, 2015
screen print 'Harvest Moon' by Sally Elford - you can find more of her work at http://www.sallyelford.co.uk

A WALKING POEM FOR THICH NHAT HANH

I bought a treadmill.
What would Thây say?
Would he smile and shake his head

or look bemused the way he looked
that day I waited in line
to ask a question that did not need

answering?

The birds are busy and my shoe is broken
and my foot turns out and in
to awkward positions. My unfocused eyes

make nausea of the green world around me.
Oh dappled light, what would Thây say?
Walk outside!

Thây who is struggling to sit upright,
is recovering from the stroke,
which left him paralysed and comatose;

Oh Venerable One
who took three months to drink
a quarter cup of tea,

who watched the full moon patiently
like when he was sixteen,
and Têt promised endless treats

of moon cakes and dragon dance
and calligraphic Buddha chants.
Oh Patient Impermanent One,

these broken steps are made for you;
these perfect steps I make for you
make me free.

© Shaista Tayabali, 2015
first image prompt via Magpie Tales

BEWARE THE IDES

Somehow it is already the middle of March, the day that did not bode well for a certain Roman Emperor. What would Caesar make of his day of doom transforming into Mothering Sunday? Into cards and flowers and cups of tea, lovingly made…

Didn't the year only just begin? Was I really in India only a couple of months ago? I feel as though I am lagging behind my own world, and that I shall catch up with myself at some later date, later year.

My mother is painting the bannister and the doors with fresh coats of white paint. Yesterday I walked with my father at an impressive clip, his long strides eating up the overgrown grass of our garden, my feet scuttling to keep time with his. Nothing on the cherry tree, I pronounced. And today, suddenly, he informs me it is in bloom. Snowdrops and daffodils are enjoying their brief coincidental meetings in clusters around the path that leads from my little den to theirs.

For four months I have had a strange occurrence with new eyedrops dilating my pupils. I have mini cataracts in both my eyes too. Cataracts! Sometimes I don't know whose body this is that I am inhabiting. Sometimes I wonder what other shapes my life could have taken had I not destined myself for the writing life. Would I feel less distraught every time my eyes stumbled? How unimaginative I am that I cannot be anything but this addicted wordsmith for life.

But that's just this life. Next life, I shall return as Keeper of Hedgehogs or An Ambassador for Pandas. A Pambassador.

GEETA SAAR - THE THEORY OF EVERYTHING

'Whatever happened, happened for the good.
Whatever will happen, will also happen for the good.
What did you lose that you are lamenting about?
What did you bring with you that you have lost?
What did you produce that got destroyed?
Whatever you have, you received it from here.
Whatever you gave, you gave it back here.

What belongs to you today, belonged to someone else yesterday
and will belong to someone else tomorrow.'

I read these words - the essence of the Bhagavad Gita - on the morning of a curious day. I was not very well but determined to catch The Theory of Everything at the cinema before it disappeared. I broke a rule by smuggling in a non-sanctioned cinema drink (coca-cola not bought from the cinema offerings) and once seated, proceeded to be mesmerised by the effects of my action. The bottom quarter of my latest journal of poetry had been resting in a pool of spilled coke for the few minutes it had taken to reach my seat in the dark, and many of the endings of my poems have turned into a kaleidoscope of smudged colours and shapes.



You know me - I handwrite my poems on handmade paper. I dry flowers and use real ink. I have never considered making copies of entire books or typing up poems beyond the world of my blog. You might think this sort of thing has never happened to me, but I don't have that excuse. Once, in Italy, I stood on the edge of a pier scribbling verse. A boat was gathering speed in the near distance. A laughing crowd on board smiled and waved at me. I waved back. A wave, a real watery wave of enormous proportion grew like a Hiroshige painting and engulfed me, my book, the lines of verse…
I love my poems and I feel sad for a while after these strange encounters of loss, but the lesson in detachment and impermanence never fails to impress me.

The Theory of Everything was a lesson in impermanence and the laws of change. Eddie Redmayne deserves every accolade. His portrayal of Professor Hawking's descent into the deepest human understanding of the nature of time is subtle, intelligent, worthy of the subject matter. The ending is terribly moving because the director uses a cinematic ploy to imagine time rewound. Redmayne's Hawking slowly gets out of his wheelchair, stands up, his feet uncurl, his legs walk him down steps, he reaches down to pick up a fallen pen. The moment does not feel like fantasy. Professor Hawking's special gift is to make us believers in ourselves, first... the universe and its cosmology, second. 

(The Geeta Saar quote was taken from the instagram account of Deepika Mehta, a yogini.) 

THE DREAM WORK OF SNOWDROPS

'...I wanted
the past to go away, I wanted
to leave it, like another country; I wanted
my life to close, and open
like a hinge, like a wing, like the part of the song
where it falls
down over the rocks: an explosion, a discovery;
I wanted
to hurry into the work of my life; I wanted to know,
whoever I was, I was

alive 
for a little while…'

- excerpt from 'Dogfish' by Mary Oliver

It's a funny thing being a poet, and reading the poetry of greater poets and finding yourself therein, and wondering what there is left for you to write, but then discovering that you, the small poet, and they, the great poet, are inspired by the same poet, and so you are connected... I discover in a radio interview that Mary Oliver reads Rumi every day. And that her poems have been becoming shorter as a result. Because once you have said the thing, what need is there for further decoration?

Snowdrops make me feel that way. Also tulips in a vase which remind me of the tulip giver, my mother whose birthday it is tomorrow…

LETTER TO...

Dearest...
The sun is setting and it is quite beautiful.
Elsewhere the setting sun is more beautiful. I know this because someone elsewhere has a more powerful camera, and is on holiday in a more tropical place. Or more historical. A pyramid perhaps, or a cave of swimmers.

I was supposed to be somewhere this morning, but a migraine ate my eye. I was dreaming when the doorbell rang, but I cannot remember. I have always lived furiously in my dreams. Once, I kept a dream diary, but then I wondered why.

It was my mother. She brought tulips. She arranged them and made me a cup of tea.

There was snow yesterday, but only a threadbare carpet, nothing to excite my nephew and nieces with. The doorbell rings again. It's the supermarket delivery man. 'Where's your snowman?' he asks. 'Where's the snow?' I counter. A little post-migraine banter. He calls me swee'hear', though he's never met me before. I like it when strangers on the phone call me 'love' or 'darlin'... It comforts me. I like it when my mother calls me Dilly Girl. It derives from Darling Girl, but only she knows how the derivation came about.

I fengshui-ed my flat last night and am sitting on my newly arranged sofa looking at the patch of visible light and branch-webbed sky. Why am I?
The pheasants reply. And I am satisfied.

Dearest, where are you? And will we ever meet? I am melancholic and content. Is this a perfect life?

Love...