HANAFUBUKI

I rarely cry, because I cried so much in the early years post diagnosis of this and that. But yesterday at the hospital the gentle kindness in a friend's 'how are you?' sent me to the tissues. I've been having a rotten time with the disease acting up, which always makes my world narrow, my fears bloom. Meanwhile April is coming to an end and our cherry tree has stretched from white glory to a brown study. 

Angelina (my sister) had some friends over for tea, and their daughter, quiet as a mouse in the house, blossomed into a mixture of Ariel and Puck under the cherry tree. Painstakingly, she gathered individual sakura, collected them into her hat and then poured them over our heads. 'If only,' she mused, 'the petals could fall all at once!' I have since learned this is exactly what happens in Japan after the hanami festival: the sakura falls thick and fast and the word for this is hanafubuki. 

After hospital, coming home to little girls who hand me petals and feathers, is a delight…

I like the floophing, flumping feel of sakura. And so do my nieces who carry the fallen delicates across to me and fix them in my hair. Today I feel more alive than yesterday. Everything that was not good yesterday is better today. Angelina whipped up some baking magic and delivered apple roses to my door even though she is sick with the streaming cold that has beset the twins. I am being kept at arms' length for my own sake.

With that special evening light streaming in this evening, my nose dusted with icing sugar (a hanafubuki of the baking kind), I feel hopeful again. And so it swings. Apparently this is what creative types do. But even in my despair and even in my hope, I am aware of the stories round the globe, and since there is little I can do, for now I shall try to keep up morale. Blow down cherry blossom if you must, I am standing in the sun.

VANESSA AND HER SISTER (AND ME)

Yellow bunting hangs from trees, and since there is only one (stalwart) lady heading up the queue outside the Cambridge Union Chamber, my friend Sylvia, my mother and I decide to lounge in deck chairs, have tea and elderflower, and discuss literature: the perennially delightful question and answer of 'What are you reading?' and 'What did you think?' When we are satiated, we turn lazily to the lady in the queue, only to discover there is now a snaking river of women and we must forfeit our front row seats. We are here for Vanessa Bell; Vanessa first, and then her sister - today Virginia Woolf is the one in the shadows. Never far, or hardly done by, but the conversation this afternoon between the doyenne of historical fiction, Philippa Gregory, and the darling of the Bloomsbury world, Priya Parmar, intends to focus on the painter, the portrait artist, the one who held the centre so others could come apart - Vanessa Bell.

Priya used to be a blogger (although she promised me at the book signing she would restart her blog) so I already knew she had been friends with Philippa Gregory for a while - ten years I discover. Philippa (I can call them by their first names, can't I?) began by determining that the tenor of the interview would be intimate, they would talk as though they were at breakfast or tea, interrupting as friends of longstanding do, and interspersing memory and anecdote. It was utterly perfect. It doesn't get better for faithful readers than to have writerly friends, genuine friends, chat, confide, illuminate. Witness: Neil Gaiman with Terry Pratchett, Junot Diaz with Toni Morrison, Lena Dunham with Jennifer Saunders...

It began with the chicken story - they both had chickens at the first moment of email encounter - and meandered through the personal responsibilities of holding history in your hand and then braiding it with imagination into fiction. At various points, I focused on Philippa's shoes - they were deep electric blue, heeled and seemed to have a life of their own. My view was slightly squinty, between heads but I had been too shy or diffident to ask the volunteers whether I could snag the empty front row seats for the sake of my woebegone eyes. They were reserved for the hearing impaired, not the visually impaired. Maybe next time, I'll ask. I refrained from audience questions too - although I wanted to know if Priya came from the harmonious duality of an art/writing family as I do. She captures that particular tension of roles once defined in families, being rearranged. But art in any family transmogrifies its inhabitants. It is never enough to be painter or writer or poet or scientist. We must be all, if so inspired.

Today marks a week after the last Rituximab cycle. I have since seen my consultant and although she agrees the disease is active, she is hopeful the chemotherapy will help. I used to have a doctor who concluded every conversation with the words, 'Let us wait and see.' So it is with my consultant (a Virginia Woolf lookalike if ever there was one). We are waiting, and seeing. I am trying my best to brave the daily fevers with as little anxiety as possible. And only those who know, know. 

When I presented my book for Priya to sign, and mentioned I was a little in love with her blog The Plum Bean Project, she was surprised. But her sweetness radiates and she graciously accepted my fangirling homage. The moment was, unbeknownst to me, captured by the official photographer of the Cambridge Literary Festival, Chris Boland, who being a friend, sent me these pictures...

What he didn't capture was Mum, who is an avid fan of Philippa Gregory, introducing herself and fangirling in a much more sophisticated, respectable way. Author and appreciative fan shook hands, because Mum had brought none of her many Gregory books. All in all, it seems only right to start the nieces young on the wonders of historical fiction…

You can find more of Chris Boland's photography at his website Distant Cloud Photography.

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!

SELF-PORTRAIT

First the hair

before it falls,

taffy, black molasses.

Then the skin,

fever-flush pink,

marshmallow cheeks,

(steroid-filled).

Wait, I forgot the eyes,

(I don’t see too well, these days)

obscured by tubes and blebs

and blood.

And then the mouth

that eats poetry

and cake

and spills happiness by the barrel.

The body ballet depends on the day:

sometimes a corpse,

and other times, a salmon

leaping, dolphin hooting

medley.

Slumped on the desk, scribing,

tucked up in bed, scribing,

hooked to the needles,

falling down the manholes,

scribing.

I find my eyes again,

scribing.

There you are,

light.

© Shaista Tayabali, 2014

Took this at the hospital just before one of my many myriad procedures.
This is how I see sometimes. Bit blurry, bit double visiony...

And this is how my mother sees me. Under her hands, I become whole. 

(Another interpretation of a dverse poets prompt…)

SCOTOMA (DANCER IN THE DARK)

My eyes dance,
my soul trembles
my nerves collapse under the strain -
I close my eyes,
the dancer whirls,
I seek her limbs in vain -

Hold on to me! I cry,
but she will not settle down
She scintillates and obfuscates -
until, exhausted, dissipates
and I am sane and still again,
and I am sane once more.

© Shaista Tayabali, 2013

I wrote about my scintillating scotomas two years ago (I called that poem Firework in My Eyes). Once, it happened just before my nephew's baptism, while I was in the church and all I could do was hold on to the chair and trust that I would see again. They begin as spots of flickering lights which devour my visual field in shimmering arcs or teichopsia (from the Greek for 'town hall' because of the zigzagging patterns of fortified walls)... 'Don't look at the light,' suggested a doctor. As well tell me 'don't breathe'. How can I survive without looking at light? The scotomas are temporary events. They pass, and I am left with a classic migraine with aura. Is it neurological? Is it cardiovascular? Or simply rotten luck?
To be a writer, you have to write. The words take time to form themselves. I am trying to write, trying to earn my place, but I am struggling so much to keep the faith. I am never lost entirely to self pity, but I do fear uselessness. As a daughter of artists, however, there is one anchor I use to keep myself afloat: in all the murk, I am always able to determine colour. And that thought cheers me even as I swipe at the dervishes to keep still...

All paintings by Degas, but the first prompted by Magpie Tales

IT WILL PASS, WHATEVER IT IS

'This too shall pass',

my grandmother said,

over and over to me - 

There was always something

that needed comforting

in me.

Yesterday I glanced up

to find a hospital plaque

talking to me - 

'It will pass, whatever it is',

it said, and time looped back

to watch over me.

 © shaista, 2013

Today is the day the Nobel Peace Prize was awarded to the Organisation for the Prohibition of Chemical Weapons. Today is also the 87th birthday of Vietnamese Zen monk and peace embodiment Thich Nhat Hanh. Martin Luther King Jr. strived to put forward Nhat Hanh's name for the Nobel prize in the 60's but time has moved far along from the Vietnam War, and the monk moves in much quieter waters now. 

Without his teachings in my life, my own peace struggle with pain, fear and anxiety would be a sad and terrible failure. The greatest of the lessons has been the simplest - to stay present and if fearlessness is available in the present moment, revel in it, trust it, be grateful for it. It passes. The gratitude and the pain. The fear and the remedy. It passes, whatever it is. For days I had stitches that had worked themselves into such positions that I could neither sleep nor breathe without the constant scratch scratch against the soft inner linings of my eye. I wrote to the surgeon with hope, and two days ago he kindly saw me, plucked out the offending irritants and trimmed others he saw might irritate me in time. Purple stitches they were, caught just in time - he was leaving for China that night to perform complex surgery on a train. Lucky travelling patients, lucky me. Perhaps they don't need prizes and awards, the heroes of our world. They just need to exist. And practice.

images: The Mag

Palestine Rose

Teasips

WILD THING

The night Max wore his wolf suit and made mischief of one kind and another, his mother called him WILD THING and Max said, I'LL EAT YOU UP so he was sent to bed without eating anything.

That very night in Max's room a forest grew and grew and grew until the ceiling hung with vines... and an ocean tumbled by with a private boat for Max and he sailed off through night and day and in and out of weeks and almost over a year to the place where the wild things are...

I bought this book for my nephew Rafael long before he was ready and when he arrived this autumn, I still wasn't sure, but almost the first words he spoke to any of us were, "I'm goin' EAT You All Up!" And Max was already in Raf and Raf was Max.

But Max is in me too. The place of the Wild Things is the place I entered the night after my eye operation. It took over three hours and when I woke, my body was doing something very strange.

'And now', cried Max, 'let the Wild Rumpus start!'

I have a theory about why I reacted so wildly post waking from anaesthesia. Our brain doesn't completely shut down during anaesthesia, even if the CNS is paralysed, and it felt as though I was simply continuing my rumpus through those hours of desperately trying to get away from the pain. I was almost jack knifing off the bed, spasming every few seconds, then minutes, then longer passages. When my speech was less slurred I requested the lovely Irish nurse minding me to keep me in the recovery room so Mum wouldn't have to worry about this as well. Karen made me laugh by teasing me and calling me Nemo, because I was flapping about so.

Pain is an animal and I became Queen of the Wild Things that night. With nothing to numb the localised site of surgery, I was facing down something with sharp and terrible claws minute after minute for almost a year until it was morning and I saw the surgeon again and he numbed my eye for a brief, beautiful few seconds.

'Now stop!' Max said, and sent the Wild Things off to bed without their supper and Max, the King of all the Wild Things was lonely and wanted to be where someone loved him best of all. Then from all around from far away across the world he smelled good things to eat. So he gave up being King of Where The Wild Things Are...

I am still sailing in the boat of pain, but feeling grateful for every day spent with the people who love me best of all and keep my supper hot and make me cups of tea and most of all, for the memory of a small figure with curly hair and a wild look in his eye as he commands or cajoles, 'Aunty Shai, tell me 'tory!' and then when I begin with 'Once upon a time', tucking himself neatly into my lap with a sigh and the occasional tap tap of his fingers against my skin keeping time to the rhythm of a tale spun just for him.

I WISH YOU A LONG LASH...

So in other news... I have been started on some new eyedrops, and their side effect is... waitforit... to make my lashes longer!!

But before you explode with the greenest of envy, allow me to point out that I am being started on something else as well. A few months ago I was given two vaccinations - for pneumonia and meningitis. I responded to neither, which has made the immunologists unhappy. So tomorrow I will be hooked up to another IV drip to receive human immunoglobulins. You know how our pooled taxes are supposed to *benefit* us in times of stress and distress? (This is about as political as I am about to get...) So also, intravenous immunoglobulins contain pooled plasma extracted from thousands of blood donors to rescue immune deficient humans. Like me. Some of you donate blood, so I wanted to say thank you. I am to receive it from now until forever, but since there is a world-wide shortage of IVIg, that may not be very long. While I'm hooked up, I may as well make a start on my latest essay...  I'll be in the right place!

THE MECHANICS OF SEEING

So there's this tube, right? An aqueous shunt device which bypasses the trabecular meshwork and redirects the aqueous humor into an outlet chamber or bleb. Or you could just have a picture...

Doesn't it look a bit like a spaceship probe nosing around innocent, minding-its-own-business Earth?? The arrow up in the right hand corner is where the scar tissue or fibrosis was removed and I felt so much better right away because my eye pressure dropped from highs of 34mmHg to a neat and precise 7mmHg... So not only did I get this lovely sci-fi drawing from the surgeon but he also recommended a cool spaceshippy ward for me... how old does he think I am?!! 

But it made Mum smile as she waited...

I posted this picture on facebook to Mum's complete shock: "How can you post such a picture? You look HORRIBLE!!" Er... right, thanks Ma! Thank you all for saying the opposite when you saw it! Either way, I emerged brighter several hours later... touching my lucky stars with gratitude.

While I was gowning up, and tugging on the evil pre-op stockings that nearly cut off all circulation, I was visited by various members of the ward staff - Ray and Grace - who remembered me from seven years ago when I originally had the sight saving Molteno tube implanted. (I could send you a video link to the mechanics of that particular glaucoma operation... it would make your toes curl in terror... but I love you, so I won't). I was in complete hell that year and for a long time afterwards. Father had just lost his sight and it looked as though I might too. It was the darkest, most terrifying year of my life. So little wonder then that Ray and Grace weren't entirely sure it was me. How am I different, I asked? Their answer: "You are cheerful now! So, so cheerful now. Your head was bent this low last time." They demonstrated my drooping head... there wasn't time to explain to my old friends about this blog and new friends and Rituximab and a rose garden of twitter love being sent in abundance every time I suffer...

My eye is a bloody quivering thing today so I shall disappear from internet activity for a while - I just wanted to say THANKYOU THANKYOU THANKYOU for your incredible support, for never letting me walk into these moments alone and, finally, wasn't it just great waking up to four more years of this wonderful couple representing our human race in one corner of the globe?

SUCHNESS

Light dances
on the willow tree
Light, that too fleeting
moment of green, heat,
nowness.

Suchness
is this autumn light,
this never leave me
stay light,
Gone before you know it
light;

Eyes. Write. Now. This
perfect
light.

Today is our anniversary. The day the five Tayabali musketeers arrived in a green village of bridges and set our travel-worn feet inside the house with the lantern and the willow. 

November has such a strange feel to it. There is a glorious arrivingness about autumn, and then suddenly, a sense of something missing, or lost, pervades. The fall of darkness surprises me every year. 

And yet, this is the only month whose leaves make their way into my journal, onto my walls, year after year. 

On Monday, instead of starting school as I did that Monday an eternity ago, I shall be gowned up for another glaucoma operation. I am looking forward to it about as much as I did my first day of school in England! It's general anaesthesia this time, possibly because the Blue Eyed Surgeon doesn't want any more song requests...

linked to dverse poets

HALLOWEEN CUPCAKES BEFORE SKYFALL

Autumn isn't exactly sizzling this year, is it? Perhaps it's just me, my eyes are woefully aggrieved with my overuse of them. My operation cannot come soon enough. Chop that scar tissue, dear surgeon, I am ready! Ish. 

Occasionally though, I see a patch of fire, usually behind gothic grills...

Yesterday I was invited to a pre-Halloween cupcake tea party... well, I made it a cupcake party by baking twelve Consistently Reliable Cupcakes and I flung in a cola-cake for luck. One of the little girls was NOT convinced by the idea of coca-cola in her cake... but I won her around! Or rather, I should say Marian Keyes won her around... it was her recipe, albeit highly re-arranged from the original (sorry M!)... see the little scuffly, crumbly pile at the Central Ghost's feet? While I was asleep, my mother decided too much icing was going to waste at the edges, and scooped a spoonful into the middle, perhaps hoping I wouldn't notice? IT'S IN THE MIDDLE OF THE CAKE MA!!! Anyway....

After cake and sangwitches, tea and bedtime stories, the grown-ups, self included, went to see Skyfall, the new Bond. I had the pretty nails to show for it, a bright yellow dress with ochre boots (very autumnal) and just before the show, we even had a martini! Well, I shared mine... a delicious Polish appletini thing... just to get in the mood...

Now, the truth is, I have never really been a Bond girlfan, too many car chases, too many cars! but with this Bond, with these Bond women, I'm all in. Although, hasn't Judi always been the coolest, ever?

'Bond Women'... did you know we are to have no more Bond 'girls'? Nice idea, although there are aways some rather sticky ends for the beauties...  Javier Bardem, the villain, was righteous in his peroxide, cyanide hell and the roll call of eminent British actors was just fantastic - Ben Whishaw, Dame Dench, Ralph Fiennes, Albert Finney, Naomie Harris... it was so character-driven, told such a strong story that had you never watched a Bond before, it would not matter. 

Tomorrow is my pre-op and despite not being an agent for MI6, I feel absolutely shattered. I prop myself up with the good news that Malala is out of danger, and recovering in Birmingham, but falter at news of Hurricane Sandy hurtling towards New Jersey. (Apparently, someone has dubbed it 'Frankenstorm'... who?!) Sigh... there's always a storm somewhere. So how about a chirpy picture of nail art?

Not very Goth, are they? They have butterflies and little pink daisies on them...
I ought to try these, like my friend Vicky who writes a blog at Books, Biscuits and Tea... now hers are Frankenspooky, don't you think?!