VIEW FROM BED

A week ago was an IVIg day. For a year, protocol has required me to have a covid test on the Thursday before the Sunday infusion, but rolling out across most lands today are ‘the end of covid restrictions’. These are words that do not inspire feelings of delight and freedom in the immuno suppressed person. For us, once again, the personal negotiations, with each situation, begin. 

And yet… something has changed, I think. Some deep understanding of fatigue, of the way an invisible source can derail your forward movement, has entered human consciousness. It hasn’t affected man’s desire for war, oil and nuclear arms. But between the two, I think a dialogue has begun. Or, at least, space has been created for dialogue. That’s progress. 

IVIg this month was sandwiched between two Rituximab doses. In the interim, I walk my bundle of cuddly fur and attempt to be fully in the present moment. Aware of wisteria and magnolia at their plumpest. Aware of sunshine and friendly dog related conversations. 

Two pairs of not so tiny hands have arrived from Malaysia and Papa has company shouting and screaming and jumping all over him. Games are being invented fast and furiously and bath time is once again a special English delight…

At the hospital, in between joys of dogs and nieces, I managed to catch up with my friend Daisy, who had a little cry when we wrapped our arms and masked cheeks around each other, and then proceeded to coolly sketch this masterpiece of Zadie Smith. Next commission: Ocean Vuong.

View from the bed, the faux blue chair… cloudy with a chance of sunshine. (How about your view?)

LOCKDOWN ANNIVERSARY: WHAT IS THIS?

Today is exactly one year to the day when Boris J & Matt H decreed lockdown in the UK - doors closed, windows open a tiny crack to let the fresh air and birdsong in. That is, if you had fresh air and birdsong to begin with. 

We have had several slow and steady leaks throughout the year so today, in the perfect visual manifestation of lockdown, we have a home surrounded by scaffolding, a locked in grid made of metal.

I can’t really remember what I did with my first six months other than cope with incessant colonisations of bacteria and antibiotics and a nifty little steroid inhaler, but I do know that I have made the most of the past few months attending all sorts of classes and courses and cooking lots. This, in the face (or eyes) of a vitreous detachment that has not abated one iota. Some kind of hopeful determination that persists even as I am a walking duvet, longing to stay in bed, and feeling the most tender bliss when I arrive, at night, once more beside my bed. Navroze has come and gone ... we lit candles... friends have been lost to us... we lit candles... family have stayed far away from each other to prove the deepest love ... Zen Buddhist practise asks this question of us: ‘What is this?’ Breathe the question in, breathe the question out. A million different answers arise and fall away, every time. I prefer the Buddha’s question and answer in one: 'What has come to be.' It simultaneously accepts what is, while forcing us to acknowledge how it has come to be. Gratitude and anxiety in a single breath. What it means to be human.

Or, if you're seven years old, you can be more blunt about the good, bad and the wicked enemies of the world!!

GROUNDHOG DAY (MONTH, YEAR)

It’s 2020! Which matches neatly for anyone who likes their numbers mirrored or believes in numerical significance. I think I belong to that crowd ... like when I glance at my watch and see the time is 17:17 or 23:23. It happens so often I take it in my stride as one of those natural oddities. So far so good, or so meaningful.

But does anyone really experience a seismic change for the prosperous? And it usually is prosperity (or a pleasant change in the fate of one’s circumstance) that we are hoping the clock will provide on the twelfth beat of the midnight hour. Luck be a lady tonight. Lady, be lucky tonight. Be mine, lucky lady. Be mine, luck. And somehow sandwiched between one year end and one year start, we hold faith on an inbreath and release, eventually, into the real, once again.

What was real for you? For me, it was the influenza virus. How do you know you have the flu, asked the infectious diseases registrar in the emergency department. How did you know you had the flu, asked the immunology consultant on the ward, the next day. I can taste it, I said. It has a certain flavour, an aroma, a texture known to the memory of my cells. (They were listening to me, thinking, ‘Mm-hmm. Sure, kid, gal, woman. Whatever you say.’) Of course, I knew I had the flu because my nephew brought it on a plane from Singapore. I’m going to call you the NOD, I told him. The Nephew of Doom. Dang it Shai, thanks a lot, said the nephew of doom, taking it on his small chin. He made up for it by reading me several pages of Eva Ibbotson’s ‘Journey to the River Sea’. He read most of the book by himself, which pleased his aunt enormously. He knows about Eva. That she had The Lupus. He's not happy she died of it. But he understands she matters to me. I haven't introduced him to Flannery O'Connor yet... I'm not completely merciless.

One month has caterpillared across the seemingly endless bouts of coughing, fever, vomiting (oh, you know about the 'flu? I shall desist from further details)... my immunology consultant wants to see me again on Monday. Yesterday I had a heart monitor fitted to check on its speedy action (we in the biz call it tachycardia) and a few days ago, I had a ghastly paralysing attack of fibromyalgia. 

Dang it, 2020! To quote my precious nephew of delight. See, Raf? That works too. NOD. Nephew of Delight. Also, Nieces of Delight. All four of my delights are just that. 'Don't eat me!' they say. 'Cook me!' they say. 'Are you listening to me?' they demand. 'Copy me!' they command. Alright, 2020, if that's all you have in store for me, along with this writing m'larky, I'll take it.      

DUCK SURGERY: A LAST TAIL OF THE YEAR

It wasn’t her tail that broke.

The title was misleading. I’m sorry. It was a broken leg. As clearly stated in her medical record. 

Her name is Emerald. But she was christened Esmeralda in the doorway of her first home. She was born with green boots and bought with love, but sadly her adoptive co-parent turned out to be less than keen.

One day, I walked across the road with my twin nieces and there in the front porch on her way out (little did she know) was the matching duck to my own William (of the blue boots).

My neighbour was thrilled to pack Esmeralda off for a ‘holiday’ and here, in our home, she has stayed. 

Not without incident.

Back to duck surgery.

William lost a boot soon after the arrival of the twins so Emerald is in good company. This is all my fault of course - I ought to be a more responsible duck owner, but it’s Christmas and the New Year is almost upon us and I am just too tired, shattered, exhausted, knackered, whacko blotto, to quote my friend Colette... 

I am hanging on by silver threads and the golden web of imagination. Cob web... I feel old and in need of hibernation. But a new day, a new year, is on its way, and must be attended to. Some energy must be found from somewhere. How? Where?

In friendship. In kindness. In the generosity of spirit and attention.

Are you listening to me?

I am listening.

But do you really hear me?

I am trying.

Samuel Beckett wrote, ‘Ever tried. Ever failed. No matter. Fail again. Fail better.’ Beckett seems like he was a kind man, with the best of human interest at heart. There is something about growth, new growth, in the old broken parts of us. We break, and we make something... new? Better? Something, anyway,

Neil Gaiman, another kind man, put it like this ... ‘I hope that in the year to come, you make mistakes, because if you are making mistakes, then you are making new things, trying new things, learning, living, pushing yourself, changing the world... So... make new mistakes. Make mistakes nobody’s ever made before. Don’t freeze, don’t stop, don’t worry that it isn’t good enough, or it isn’t perfect, whatever it is: art, or love, or work or family or life...’

Or ducks with broken legs... or bodies with broken immune systems... on we go, onwards, ever onwards, the old and the new... gathering extraordinary memories. The tale of William and Esmeralda really all began with my beloved friend Mary sending me Jemima Puddle Duck for my birthday in August - a gift of cheer. Mary thought I would appreciate the graceful lines of a duck in pink wellingtons. Well, I did. I do. And so the family grew...

HAPPY NEW YEAR my dearest readers, thank you for the love, concern and the memories. Happy new year to us all xxx

AUNT ALICE AND THE MARSHMALLOW FLOWERS

Dear Aunt Alice,

Somewhere, in other worldly places, you must surely know that I have inherited your perfect signet ring. Initials AJ carved in pretty curving script. I have been wearing your ring from the moment I received it from your niece Mary, because she thinks I am an aunt worthy enough to be in your mould. I thought of taking it off before a jaunt into London to keep it safe, but decided I wanted to take you with me since I suspect the last time you tripped around London as a young woman was, perhaps, a hundred years ago.

Liverpool Station was freezing cold, but once we were in London proper - Oxford Street proper - I warmed up. No snow to offer you this Christmas, but the lights! An assortment of charities paid towards these giant leaping angel figures. Beautiful for the crush of humans below to behold.

Shopping commenced. I'm not sure you would have approved of my purchases, but they were safe enough - a cosy camel turtle neck sweater, a leather bag and a pair of sunglasses. All on sale! Mind you, the prices, even on sale, would probably shock you. To ease the shock, my sister Angelina ordered cronuts and hot chocolate from a famous bakery called Dominique Ansel. Now this would have impressed you - a marshmallow cut like a crown was dropped into steaming hot chocolate, instantly blooming into a flower...

Later, on Great Marlborough Street, we stood outside Liberty and admired the Tudor Revival frontage. Did you know the timber was built from the ship HMS Hindustan? Or that in 1885, Liberty brought forty two villagers from India to stage a living village of Indian artisans? These handy facts are available from an extraordinary web of information us global villagers dive in and out of 'online'. I wonder what you would have made of Wikipedia? Here is something Wikipedia doesn't know: my father had three of his watercolours exhibited and sold by Liberty in the 1970s. Wikipedia you may have been on the fence about, but my father you would have loved.

I did feel a trifle faint in Liberty - so many people! - so was glad first to plop onto an inviting bed in Anthropologie, and then to mesh our way from Carnaby and Kingly Streets towards a Japanese restaurant, which also served my favourite Korean dishes, and to my delight, a delicious plum wine. For a nineteenth century Englishwoman, I suspect your gastronomic tastes possibly didn't stretch to the Orient, but maybe Mary will surprise me and tell me you loved experimenting with the new!

I got muttered at by a stranger for temporarily blocking the entrance to the tube - did I mention this was the day of the human crush? At these moments I am very much the hokey local from a tiny Cambridge village. By the time our train was hurrying us home, we were shattered and ready to slide, submerge and otherwise disappear into sleep. I hope you enjoyed the day out. Today is the last day of the year 2016. Soon 2017 will be upon us. 2016 has been a truly difficult year, for most of us, not least your beloved Mary. If you possess any magic, wield away. We need some magic. I can only be sure of one thing in the new year - I will continue to be the most loving and creative aunt it is possible to be. Keep your spirit beside me!

With love,
Your new friend-in-auntyhood across the century,
Shaista

Photos courtesy Debra Edward

MAYDAY

I like painting my lips.
Nothing wild like purple,
or unexpected like green;

just your standard, average,
ordinary orange,
herald of summer dreams -

or a plump, pale pink
promise of innocence,
candy floss at Strawberry Fair

when school was out
and love
was ever in the air.

© Shaista Tayabali, 2016

Poetry prompt from dverse Poets Pub...

WINDFALLS

It's like that
even in autumn
especially in autumn
when you become part of the fall.

You have forgotten to drink
enough water through summer, and now
you mirror the parched, desiccated
leaves that crunch and crumble
beneath the heels of your boots.

You are being pulled back,
taut elastic,
to your roots.

You pass a green tub
full of this year's Bramley windfalls

- leaves fall,
dancing free of your marching feet.

Everything is not dead
when it falls.

I pick up the living,
shaped like hearts,
the plump, yellow, still beating.

I run out of breath
clutching on to the promise
of new shoots awaiting me.

I am gorging on the wind
that feeds me hope.

I am home.

© Shaista Tayabali, 2015

(On my way over to the nieces, three words stop me and start a poem. By the time I am writing the last three words, I am home. This is a love poem to the beat of my own heart, the march of my own feet, the breath that carries me to love.)
Participating in dverse poets and magpie tales poetry prompts.
Images via dverse and magpie. Photo credit: Daniel Murtagh.

THE LIFE CHANGING MAGIC OF TIDYING UP

I have just finished reading Marie Kondo's bestselling The Life Changing Magic of Tidying. It is a book with a buzz. The in thing (in the world of tidying). The sort of book you strongly believe arrived just when you needed it. Just as you were knocking objects off table edges, tiny flower pots for example... My eyes have been deviously difficult this year and so I fall into this category of believing the Kon Mari method has arrived in the nick of time.

The essence of the book is this: pick up an object. Ask the question - 'does this spark joy?' If the answer is yes, keep it. If the answer is no, or non-commital, sayonara it. And then tear your hair out when you discover just how complicated your non-committal responses can be. Add into this equation being a writer, loving books, and sometimes not necessarily loving a book, but needing it. At some future date. When your future self will remember you once had that book and you GAVE IT AWAY.

And then there's all the ghastly paperwork that must be dealt with… do you have a paperwork situation? 

I think I have learnt a certain measure of detachment from Marie Kondo, which is another essential teaching of her book. It is a humiliation to be the possessor of more things than you need when garbage dumps and slum heaps are growing. And upon their festering mounds, children, making a scavenger's living. Kondo never says this explicitly, but it is part of the secret of joy. Things can bring us temporary joy, perhaps even save our lives - and therefore things must also be tended to, thanked, seen and given due credit. When objects, even books, pile up (tsundoku) we commit the crime of ignoring them, even destroying them. Japanese homes are built differently to English homes: space and functionality are entwined in a much more visceral way. Storage is of utmost importance. And yet, Marie Kondo's book has become an international bestseller. I hope I am able to implement these tidying skills into my life - but as for my books? That's a tough racquet. Also toys and little this-and-thats for my foursome RafiBellaEvaEllie… I like being the aunty who has things, so many things to play with. But if I didn't have things, so many things, there would still be the roses…

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.

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.

A WALKING LOVESONG FOR MY NIECES

Birdsong.
Rain song.
A dog's song.

I am in a hurry to reach my nieces
before bed songs.

Paw prints on my Gap white t-shirt:
Grace, next door, wanted to play;

the shortest journey stretches the longest
as I count my way
home.

Dandelions tempt me
and I denude one, shamelessly;
I bury my nose in lilac and think
everything is lavender this day.

I pass immaculate glass conservatories
and somewhere a tractor disturbs
the evening chorus.

Eva, can you hear my
sandals treading swiftly?

Ellie, will you decipher lavender
when you brush against my thigh,
when you use my limbs as props
for whims?

When you gesture imperiously,
I arrive.

© Shaista, 2014

I love all of my nieces and my nephew equally, of course, but can only walk to two of them. I write as I walk, carving words in rhythm to my steps, gathering flowers, which they might like to eat when I arrive…

A PUMPKIN REFLECTS

The trick or treaters have been thin on the ground for some years now that we are grown and flown. But when I caught wind from my Canadian cousin of the thing you are meant to do to entreat the treaty hunters, I inveigled my sister Angelina to get carving...

She is truly artistic and gleefully carved into that pumpkin, slicing and dicing his teeth with swashbuckling finesse...

I placed him by the foot of the willow tree, under the lantern. Sweets at the ready, inside the door, and I felt sure the calling card would entice, even though my mother was completely without faith - "They won't come," she foretold gloomily, "they never come anymore"...

But within minutes of our sniggering, smirking pumpkin lighting up the street, the doorbell rang!

I've lost count of the number of children who have rung the bell, in droves, others hot on their heels...but my favourite little Halloweeners are the nieces, dressed as pumpkin and bones...

(The doorbell just rang while I was preparing this post - a young girl, not vamped in blood, scars and gore, but looking for someone named Rosie...who apparently definitely lives here... the same address! Her ghost maybe?? Spooky!!)