EASTER ANNIVERSARY

April has been a busy month. Towards the end of March I was asked to offer my writing services to a book project recording the lives of some of the folk who live in our village - a very tiny selection but hopefully a somewhat representative one. In between a plethora of interviews, I have also embarked upon a new drug called Mycophenolate Mofetil (I had tried it before and it had been extremely unpleasant... this is what the doctors call ‘re-challenging a patient’... a bit like facing an old foe in a new duel). A gastroscope wound its way into the mix with a bunch of biopsies taken. That left me a little bruised and weary.

At Easter my feet found their way to our local church where I bumped into friends who were arranging the Easter flowers. I ended up helping with the main arrangement by the altar, and marvelling that ten years had passed since I was in hospital at Easter, 2009 - the three month long admission that marked me on deep, unfathomable levels. A decade ago I had a clear understanding of what was needed of me to live, or rather, to go on living. In some ways, the essentials haven't changed - two of which are named Perveen and Chotu, or Mum and Dad... but I am once again, worn to the bone. To the cells that deplete, and replete, and deplete, and on and on... until I cannot see anything but the forks and crossroads and ahead, all woods. But where the flowers are, there the light still is. Here, a bouquet of carnations, for you. 

HANAMI TEA CEREMONY, KAETSU CENTRE

I never knew the Kaetsu Educational and Cultural Centre existed until just before Japan Day earlier this year. I never knew the Centre had been hosting celebrations for Japanese culture for decades. It’s nice when you discover depths to the community life that surrounds you...although nothing really should surprise one about Cambridge... it isn’t London, but it is evolving beyond its origins,beyond fenland and university land to a place where different migrating worlds collide.

Back to hanami in the heart of town. I arrived too late on Japan Day to enjoy any of the food - of course, Japanese food would be the first to be devoured! But I did sit down at the calligraphy table, and I did buy some beautiful handcrafted lavender scented worry dolls made by Kazuko, the chef herself!

I was so charmed by a young girl in her grandmother’s kimono, that I wrote to the administrator to say so, to thank them for the day. The person who wrote back turned out to be the charming girl’s mother! Which is always handy. When people praise me to my mother, I know she appreciates my daughter-ness. Filial success!

Hiroko replied, inviting me back for an informal hanami celebration. She is learning the ways of the tea ceremony herself, and I was guest of honour. The matcha was delicious, so lucky to have had two bowls (chavan), and the cake and sweets were all perfectly balanced.

I read a couple of my poems out loud to the five women present, and later, when it was just myself and Hiroko, we spoke of her own literary work - she is completing a paper on the ancient craft of kintsugi, the philosophy of which has long interested and intrigued me. Kintsukuroi in more recent Western philosophy is the idea that even something broken can be made beautiful, transformed by the gold lacquer that holds the pieces together. Why gold? Why such care taken over something broken? These are questions Hiroko is exploring and I can’t wait to read her paper. 

SPRING BIRD, FOR SHELAGH CHEESMAN

When sunlight 

comes my way, 

I can see 

the smallest bird, high up,

on the cherry tree; 

belly, beak and leaf.

Lose that light,

come storm and sleet,

how easily I forget 

to see,

with memory.

All is lost to me. 

Then turn to the listening ear,

and touch my hand to 

curve of cheek -

mine, or yours, either 

will do. Love goes on, 

invisibly. 

© Shaista Tayabali, 2019
(sharing with Dverse Poets Open Link Night) 

Today is the one year anniversary since my friend Shelagh Cheesman passed away. Shelagh loved spring, the blossom and the warmth that returned to her Raynaud's afflicted fingers. I miss her, I have grieved the loss of her, and I feel her guiding hand strongest this month. 

Our mutual friend Colette, Shelagh and I also shared a love of these doll necklaces that were sent by Meme, another lupus-pal who lives far away in Australia, but really only a heartbeat away by snail mail, and email, and her loving spirit. Onward we go, with the friends who take care of our hearts. 

A SWAN IS LIKE A SOFT FLUFFY PILLOW

I saw a swan sip the river today 

And I worried about plastic.
I was relieved when I saw the bread

Someone had flung over, enthusiastic.

I saw a counsellor today. 

Except he turned out not to be one. 

I am a psychiatric nurse, he said,

And you are not a problem. 

My kind of problem, he meant, 

and he meant it kindly.

No suicide for him that day,

And he was surely glad of it.

But I had been longing for a place to grieve, 

To weep my river of sorrows.

Instead I walked to the graveyard,
And paused beside the bridge;

I watched the swan sip, 
And sunlight dip,

On the swan’s soft fluffy pillow.

And I tucked my tears up, under. 

©Shaista Tayabali, 2019

Dverse Poets 

THE OTHER SIDE OF THIS

The life I wish to live,

lives on the other side of this:

Maribeth removes the cannula 

from the back of my writing hand,

but my nerves still remember Rachel’s

on the inside of my right wrist.

Seen or unseen, these veins connect,

mapped in despair together. 

Mind is the beast to conquer, they say.

Hubris, I say. Body holds equal sway.

Memories exist in the pockets of cells,

passing down the tales.

So nobody forgets. No body forgets.

And the mind is never tamed.

The life I wish to live 

lives on the other side of this.

Perhaps I live it in the wish?

© Shaista Tayabali, 2019

(On the one hand, I am privileged to be taken care of in an excellent teaching hospital by skilful doctors and deeply caring, efficient nurses... on the other... well, on the other ... is a needle in my wrist, a PICC line in my arm, twenty tablets needing to be swallowed... but if I may borrow a third hand - yours - there is also spring... and crocuses... and summer to come... if I am weepy for now, bear with me, as winter bears up till spring.)

(Gathering for www.dversepoets.com Dverse Poets)

CAMPYLOBACTER AND I

Who are you, bug of my gut? Why do you wish me to be your home? You have turned my body into a battlefield and I look nothing like a warrior anymore. I am the slain defeated soldier, wishing only for the earth to open and swallow her whole. 

Campylobacter. Another name acquired to add to the list. Did you know it is a common enough bacteria mostly found in poultry? Chicken specifically - factory farmed, sad toxic little chicken... but also the plastic packaging which contains the chicken, and any fresh produce which comes into contact with either. So really, just about anything can host the little devils. Many people in the UK population have had campylobacter chomp away at them for a day or a few days or a week. But the normal body expels the unwanted intruder ... 

Perhaps we should all be vegans but we have developed such a deep and passionate art for cooking throughout the ages and embedded in every culture and nationality, that to erase meat and fish for the sake of the occasional gut attack, appeals to a select few.  We know we contain bacteria within us - just as we ourselves once were bacteria... 

Then there’s your tricky antibody deficient, immuno suppressed lupus patient. 

I had mysterious bouts of sepsis several times in 2017 until this bacteria was finally discovered in my bloodstream - where it should not have been. This is supposed to be a strictly gut bug. We pelted it with IV antibiotics and thought ourselves in the clear. But all through last year I have been trailing behind a sense of weariness, an unwellness hard to define. Was my dosage of Rituximab too low? Too spaced out? Did I need a new drug added in? More steroid? 

I travelled to the East, and seemed on the surface to have managed miraculously well... but every evening and by nightfall I was close to tears with whatever it was that was battling away inside of me. As soon as I returned home from Singapore I went into an exhausted depression under my duvet, and thence into the grip of fierce abdominal pain. Was it my kidneys finally declaring nephritis? I even wondered if I’d had a mini heart attack, so intense was the painful grip.

The psyche of a lupus patient is a horrible fascination. For months now I have felt despair and entrapment at the thought of this being IT. I have always somehow freed myself from the idea that the future is bleak because I will always be ill... but this time around I seem to have less will, less reserves... 

Today is Valentine’s Day and my present is that the medical team have agreed to stop the three streams of antibiotics that were eradicating me with their toxicity. It will take time for my system to clear itself of these drugs ... but the PICC line is still in place so it is hard to believe such a time will come. It will come. Will it?

I could have waited to write an article when light and hope had replaced the nauseating struggle, but this is real too. This in the middle of the thing, this neverending ghastliness that is the nature of this life. Waiting for the energy of hope to pulse within. 

RED KOI, BLACK SKIRT

A radiologist rushes by
in a black wool skirt
splashed across with koi;
red fins, white bellies,
swimming in the creases
as she moves.

The skirt is from a tiny shop
in France; she says this sadly,
knowing she cannot satisfy
my craving for koi
beneath my own fingers,
in friendly wool.

I pass Fiona Sampson’s ‘Orpheus Variation’,
and travel up the long tube
to the topmost floor,
which tucks me away
from apheresis, and other humans,

and I swim
into the closed wards of the infected,
the diseased, worming in to join
the dark night of our souls.

But when the blood moon draws closer,
and blue Monday arrives, I arise
and begin to shed the creature that holds sway;
small sheddings are small victories, these days.
©Shaista Tayabali, 2019
participating in Dverse Poets Pub

(I thought about tacking on a different ending because the hospital did let me out, but only to reveal the next morning that they had found the bacterial culprit, so I haven’t swum to freedom yet. I have a cannula in me and nurses arrive daily to my house to administer antibiotics through a drip they set up. Something is being shed, I have to believe, or else the dark nights will claim me again...)

TREASURE HUNT

It circles round just as fast

and soon you find yourself 

at the end (the seeming end,

really, just another beginning:

another airport, another birthday,

Easter, Christmas, New Year).

And still the feeling 

of leaving something behind,

but tripping ahead anyway;

each day, each month 

a further clue, on this 

treasure hunt we call life.

© Shaista Tayabali, 2019

Arts and Crafts Corners brought me great joy over Christmas... this one a very reminding spot in the house, even after two of my nieces have tripped across the oceans back to school and friends. The children of my life come and go, I visit and leave... but small creations remain as memory).  

Artist Credits: Various Tayabali-Edwards

Poetry Prompt... Dverse
(P.s. what does the Inside Of Your Brain look like?) 

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

TWO TREES AT CHRISTMAS (A CHRISTMAS WISH)

It’s Christmas time. A time for miracles. A time, I stubbornly insisted, for a real Christmas tree. ‘But the needles,’ my mother said. ‘The mess...’

And even so, she relented.

Just a small one...

Well, actually... in the end we got two. One a nice normal-ish size... she was very fluffy when she came out of her netting as though to say, ‘Here I am! Ta-dah!’ And also a very tiny little fir, you almost have to squint to see her. Except she is a bright green and also had a bit of an air about her, something delightful. Too small of course for the decorations I have laden her with - two serious mice (occasionally sad in a certain light), one smiley mouse and a deer... which arrived from my friend Meme in Australia. A friend who also has a host of 'co-morbidities', like so many of us do... from vasculitis to neuropathy, Crohns to hypothyroidism. Or just the usual... fever, swelling, pain.

We are supposed to thank pain, thank swelling, thank these harbingers, which are the reminders of our body’s needs. If you are in pain, then you are alive, said a friend of mine to me once. He has Parkinson’s and was a fount of hard-earned wisdom. I have always tried to follow his advice. Or at the very least, remember it.

For me, this past year has been very ‘triggering’ as they say. But I think we are all triggered almost continuously? Constant barrage of televised, radio-ised, internet-ised streams of all the desperate stories of our lives across the globe, stories of politicians not really seeming to care, and also stories of people doing wonderfully well with incredible achievements – seemingly superhuman achievements. And some of those extraordinary achievers are people with illness. Take Mary Frey, of The Frey Life channel on YouTube. She has cystic fibrosis and an incredibly inspired following... 

Or Molly Burke, who is a blind YouTuber and also has a hugely inspired following...

And then of course there is Selena Gomez who extended the miracle of her kidney transplant story (donated incredibly enough by her best friend Francia Raisa) by sharing it with the public. I am sure everyone with lupus had friends sending them the viral clips of Selena’s story...

What we rarely hear about are the ordinary folk, you and me, getting by on our own rations of kindness, compassion, courage and fortitude for ourselves and those around us. I believe we need the simple stories to nourish us, to withstand the daily onslaughts of global and internal suffering.

So here we are this Christmas time… and my wish is a simple one. That you feel nourished as this year draws to a close, and that somehow, in some small ways, the miracle finds you and those you love and so spreads on, and on, outwards.

With love,

Shaista