HAPPY NEW YEAR, IN HOPEFULNESS

The last day of the year falling on a Friday means that the church bells are in full song this evening. The fireworks have yet to descend (ascend?) and the dogs of the world have yet to howl piteously at the seemingly endless wide awake activities of their families. Milo, the cockapoo pup, who belongs to my younger brother, a perfect sorrowful example - my niece rang half an hour before the new year, Singapore time, to inform me of this. ‘I’m trying to stay awake!’ she said, sounding almost as piteous as Milo. Staying awake till midnight is a tough gig when you’re eight years old, however easy your ten year old brother makes it look.

I miss my four little mice, but somehow we have all created such meaningful and layered memories over time that I don’t feel the loss. Despite being in and out of hospital, and my veins getting a bit grumbly, gratitude has so far been the calling card for me. I suspect WhatsApp has much to do with that!

Being the English teacher of two Vietnamese nuns across the sea, has also enabled me to stay connected to the deeper practice of Buddhist mindfulness and the more ascetic aspect of our human selves. Joyful, nonetheless, but more careful of what and how we consume. How much we consume. And yet the nuns are also grateful for us, laypeople, who make their lives possible by offering support of that very material kind - so electricity, plumbing, food and medicine are paid for. It’s all a balance, in the end. And so long as we are able to balance each other, we will continue. It’s the only way we can nourish each other. 

Speaking of balance and nourishment, thank you for buying my book, for writing reviews, for writing to me… as the year ends, I sit by a lit candle and pray that I have energy enough for more books, for more travel (again someday) and more love. Happy New Year to us all, everywhere!

Jólabókaflóðið

It began with runes… and ended with a flood. A flood of books... the Icelandic tradition of giving and exchanging books on Christmas Eve, then curling up in a cosy, fireside reading nook with a cup of hot cocoa.

During World War II, paper was one of the few items not rationed, so books being given as gifts began a tradition that continues to this day. During the Reykjavic Book Fair, a catalogue is sent to every home, from which books are selected. A 2013 study carried out found 50% of Icelanders read eight books a year, and 93% read at least one. My friend Georgios says his New Year's resolution is to read a book a month. In my own reading life, the books on my shelves gather, but my eyes, my energy and my concentration cannot keep up the pace I once considered a natural part of my day. Christopher Norris, pioneer of World Book Day in the UK, has been trying to encourage a national Jólabókaflóðið... 

If you were to give a book tonight, or receive one, which book would you want to curl up with? I have Jessie Burton's Medusa - The Girl Behind The Myth,  I gave Mum a Domêstika course on the Japanese art of kintsugi - how to repair your broken ceramics with gold dust, enhancing their original beauty, which, while not a book, is its practical equivalent, and for Pops, the audiobook of The Virginian by Owen Wister, the original Western... I mean, just look at that cover!

'Course, if you were struggling to think of a book, there's always yours truly's latest, which is now the number one book under an Amazon search for 'lupus' or 'auto-immunity'. In the UK anyway, thanks to the lovely folk who have already bought and reviewed me. So, on that cheery note, a very merry Christmas Eve to you all. I am flat out fatigued with year numero deux of Pandemicness, but am holding steady with Chotu and Perveen on either side of me... 

HOW TO RECONCILE

I write my experience in sand this time,
wanting it forgotten - not like last time,
every day recorded in verse and flower, 
a memory scripture to treasure.

Older now, none the wiser now,

just swimming in the current of me,

a current of one, in the ocean of all - 

more scared now, knowing how far the fall.

In some ways, it is all the same.

Gold dust on white blossom, still plump,

and yet, already, the slow drift

to green grass, to soft earth, to winter down.

The nuns have so much to remember,

like nurses, saving lives. They need the bell

even more than we do, us, temporary retreatants,

fleeing our worlds, escaping to theirs.

Breathing in, I am breathing with my father's back.

Breathing out, I breathe with my father's lungs.

I invited my father to join, but he declined,

knowing I would bring him in, anyway.

It's harder for some. No light or ease,

but the bells toll on, anyway. 

The birds are here, the birds are there -

my cup of tea grows cold, again.

Mother breathing in with me,

mother breathing out with me.

I want both things at once.

To choose is to lose. Something. Sometimes.

Can anything stay a secret?

And still we try so hard to hide.

Suddenly, the flood gates open. 

Everyone cries. 

The gold is gone now. Soon,

Sister Tea Cake will sound the bell

for final goodbyes. Everyone cries.

Sometimes.

Present moment, wonderful moment.

Thây is still alive. Smile.

Be still and heal.

Reconcile.

@Shaista Tayabali, 2021

shared with Dverse Poets Pub
Written during Reconciliation Retreat,
Lower Hamlet, Plum Village

Here is a wonderful and very recent TED talk by Sister True Dedication, which you might enjoy...

LUPUS, YOU ODD UNNATURAL THING

Twelve years after starting this blog, I have a book to offer you. The title is a line from one of the poems I wrote during that interminable hospital stay in 2009, those extraordinary three months in which I found my voice. It plays on a central theme of my life, not just the book, which is this: is it normal and natural to be ill, or is it unnatural, abnormal? How can one love one's given life for all that it is, if we are trying desperately to divest ourselves of a thing that arrived, with shadowy wings and teeth, but then settled over long years into some sort of companionable foe?  

Here is my cover, companionable foe et al! I do hope you will buy the book and let me know what you think after or while you read it. You can purchase it from any country on Amazon by searching for my name or the book’s name or, if you’re in the UK, click this link.

Over the past seven years, from its nascent beginnings as a dissertation for my Masters, I used another, sweeter image to inspire me - a children's illustration by the artist Maia Chavez Larkin - one which I have often used as a header for this blog. And then suddenly, it didn't seem right. Perhaps I was hoping that a taming would become possible. That I would develop a sort of commanding presence over the growling, snarling beast - but after several bouts of sepsis, including a birthday episode only a few months ago, I knew I had almost fallen into the old trap of underestimating auto-immunity. 

My book covers thirty years worth of navigating this odd, unnatural thing in the midst of a lucky, beautiful life, so when I happened upon the bold red and black, teeth and tail, hood and vulnerable back, I knew instantly that I had found my book's cover. The artist is Silja Goëtz, a German illustrator based in Madrid. You can find more of her work at her website here. But, in gratitude to Maia, I also incorporated the original sad but hopeful stomp through the snow…

DIARY OF A CHAI-NOISSEUR

"Open it! Open it!" commanded the twins, when they spied a parcel on our dining room table. "But Shaista is still asleep. I can't open her parcel," said my mother, diplomatically, knowing I would be unamused at not being able to open MY parcel. I am no different to the twins in this matter. 

So the next day, when I was awake at a reasonable hour, I obeyed the repeated command. To tell the truth, I did know what was inside, and also suspected the children would instantly lose attention. And they did. Inside was a garden of herbs packed gracefully and extremely economically by my student, Sister Linh Bao. Tucked away in the French retreat of Village des Prunièrs, the nuns use a panoply of herbs not only in their cooking, but also in their tea, and most importantly for their health and well-being.

The two Vietnamese nuns I practise English with every week never skimp on their love and concern for Pops, who is now about to embark on an exciting tea diary adventure. Once again, in keeping with truthfulness, Dad found the scent and flavour a little... shall we say, subtle? He has decided his taste buds need to get used to the light hints. No milk or honey or jaggery here, only a meditation on warmth and nature. 

Speaking of gifts and nature, the mice were happier with another tinier parcel I received from Liz, owner of Sammy, the little cockapoo I have begun dog sitting. Oh, have I not told you about Sammy? I think he deserves his own post, so I shall hold off on further exposition for now, but here is the sweet treat Liz gave me to thank me for minding her dog while she attended her brother's wedding...

I wonder what the mice will make of my third parcel of the week (yes, it's Christmas already in the Tayabali household! My clever and inspiring friend Kate sent me a book I've been eyeing ever since it was published, from an author (Robert MacFarlane) and illustrator (Jackie Morris) who are equally clever and inspiring...

BÁC PHUOC, BEGINNING ANEW

The chapel hasn’t changed much since its last refurbishment. Since my first visit to give thanks in 2009, for surviving the worst and longest of my hospital admissions. 

Usually a quiet spot, quiet enough to hear the hopeful weight of a thousand prayers, today there were two gentlemen on their mobile phones, one in heated exchange with his caller. Three Muslims observed their afternoon namaaz and one man walked straight up to the altar, and communed with his rosary. Is a Buddhist noticeable in prayer? If a Buddhist were to perform prostrations, they would appear no different to a Muslim. A Christian counting rosary beads appears no different to a Hindu with his mala. 

There were no women in the chapel today. Normally that would give me pause, but I wanted to sit somewhere and think about my friend Dr Hong Phuoc Ho. We were always in dialogue from the moment we met in late 2005... we were forced into a sort of silence by the ferocity of his last years with Parkinson’s. And even with the profound physical challenges it brought to his muscle control, Dr Ho still sang a few lyrics when Dad commanded him to this summer, and during our last call, he tried to tell me he had dreamed of me ... but the details I will never know. 

When the news came on Wednesday night, a heavy stone landed on my heart. Grief can be instantly physical. I cried and cried. The next morning I dreamed of rocks falling, threatening to crush the person below. To crush me. Dr Ho had suffered in the prison of his body, and in the prison of his memories of the Vietnam war; in the dream I was afraid of the damage those rocks could inflict, but there was no pain. And I woke up. 

What I do have to hold are all the memories of sixteen years - and the hopeful joy of a friend appearing suddenly in the middle of your life, to challenge and to enhance, to delight and engage the deepest and truest parts of our lives. 

Being in Addenbrooke’s the day after his passing in that very hospital allowed me not only time in the chapel, but also communion with the art on the corridor walls - this is one of the coolest images and will now remind me of Dr Ho - fierce and playful, suffering and equal to the task. 

For some reason, the art up at Addenbrooke's no longer has the name of the artists attached to the art. Perhaps this is a Covid change. I shall update when and if the artists' names are included again. The central piece of the young Vietnamese boy is a silk painting titled 'Fight Till The End' by Cố Tấn Long Châu. Báo Ảnh Việt Nam, 1967.

HELLO FRESH (a gratitude post)

Some time toward the end of March, I began a subscription to the home delivery food service known as Hello Fresh... you’ve probably seen it advertised between your YouTube videos. For many years I’ve bemoaned the fact that I struggle to cook in my mother’s kitchen, because it is almost entirely equipped with the food she prefers to cook (aka the food my father likes to eat). This sounded like a poor excuse even to my own ears but now that I am cooking every week, and the food is more than edible, is sometimes plate licking delicious, I know I was right.

I started off unsure, and my parents never knew what would befall their palates that evening, but my mother, for one, was just grateful that her not so secret fantasy, of someone else on kitchen duty, was manifesting. Some dishes were an instant success like Prince Harry’s Chicken Pie - no idea why it is so called - but it is comfort food ... and anything with fresh greens and fruit, or fish and potatoes are always welcome.

As summer turned to hospital blues, and sepsis visited first my father and then me and then Dad had gallbladder surgery, after which he struggled to get his sodium levels balanced, Hello Fresh provided a steady security for me manning the household duties alone - I didn’t have to think about meal planning or organising supermarket shops while I did the laundry, the ironing, the watering of conservatory plants and kept cheerful. The giant friendly box arrives on my doorstep once a week and Shy’s Restaurant is back in business. It’s a bit fish and chicken heavy because our own home cooked Indian vegetable dishes are far superior to the cheesy pasta or bland couscous options, but that’s ok - Hello Fresh isn’t for every day. 

Thank you to the universe and to human creativity for the possibilities that counter the other side of who we are. Are we more creative than destructive? I like to think so, or we would no longer be here. Too clever by half, that’s our trouble... and not tasty enough for anyone to want to eat us. Luckily....

NOBODY KNOWS THE TROUBLE I’VE SEEN

My new favourite tragic song played by Eva Amaya (my repeated request) on her keyboard is 'Nobody Knows The Trouble I've Seen'. Louis Armstrong called this 'a little light spiritual'...

It has been quite a month... and I am trying to be good by documenting it here or the month will slide by, as pandemic months have been wont to do. August is my birthday month, and as has become something of a strange tradition, I found myself admitted to Addenbrooke's hospital in the days leading up to my birthday. On the day, from the earliest hours, the nurses kept popping their heads into my side room to check if I was awake so they could wish me, but oh how I love escaping into sleep during those first hospital hours. Dawn heralds the beginning of 'obs', 6am was my first IV antibiotic dose and then morning meds and then breakfast and then... who knows? Further bloods, scans, doctors visiting, but on my birthday morning, a Saturday, I was free to sleep. And I did! So the nurses made me a card instead...

In the afternoon, when I spoke to the siblings in Singapore and Malaysia, Eva produced her full piano repertoire... and as soon as I heard the first notes of the spiritual, I knew this one was mine. Ever since that day, Eva usually humours me with a rendition, even though it is by no means her favourite. She does a mean 'Oh Susanna' which I also love, and 'Ten Little Indians', which has the most horrifying inheritance of black minstrelsy and Native Indian genocide behind it. Eva doesn't know about these things yet. The brutalities of the animal kingdom are as far as the twins understand how justice and injustice play out. 

One day before I started to spike fevers,  Dad had a dramatic episode. He had been listening to the cricket outside the front door, felt a bit hot, come inside and fainted away by the newel post. Mum found him there, later, 'resting' as he casually put it. We tried to sit him up and he sipped at some water before fainting away again. This time, in my arms, and a rather horrible moment it was. Mum rang the paramedics, but by the time they arrived, Pops was very much himself. He charmed the duo, one of whom also commented that judging from old photographs, my mother hadn't aged in thirty years (true) and then, while they were parked outside writing up their report, we three sat at our dining table, drinking sweet masala chai and eating Parle G biscuits, thanking our lucky stars for another escape. Dad's gallbladder sepsis was only last month after all, and I had clearly incurred the mischief of the gods by telling Mum earlier that day, "Take the day off, Ma! Lie down, relax, you've earned it!"

The very next day, I slid into my own little bowl of hell. One morning, while in hospital, my body went into full blown rigours, and it crossed my mind that I was experiencing a form of human torment - I longed for someone to rub my legs which felt frozen, someone to hold my body still as it ricocheted to its own violent rhythm. But short of actually holding me, the nurses and doctors were wonderful. And the new antibiotic prescribed worked its magic to bring me home. But you do see why I would need 'a little light spiritual' after all that, don't you?  

Just to lift that spirit a little further, here is another favourite of mine from my early years of hospital life. At first you think Nina has nothing for you, as tears stream down your cheeks, but then she comes through as only Nina Simone can do, and suddenly We Got Life!

BEING A SPORT

See that gap between the dappled leaves? Over where the sun is blazing? Some dudes in crisp starched whites are playing a game called cricket. 

This game has been the soundtrack to my life; I have been swimming in the sonorous commentary of cricketers since I was a wee young thing. Ask me to tell you the rules. I can tell you how a cricket bat feels held between my two hands. Wrong. I can tell you how it sounds to hear a cricket ball hit that bat, or the stump or the trunk of a tree. It sounds like it feels. A crack. A thunk. A not very pleasant meeting of two hard objects colliding ‘just for fun’. Sign me up never. I did my time, in the garden, to please Dad (whose delicate stomach can’t withstand the tension between India/Pakistan and England to this day) but I steered clear of any pleasure and volunteered myself for nothing. I value my skull and orbital cups. The curves of my cheekbones and teeth. 

And yet. How I wish it could have been otherwise. How I wish I could have been a games person, a ‘wait for me, I’m coming’ desperate to keep up with her brothers kind of competitive sister. A tennis playing sister-in-law borrowing visors, and a golf playing aunt, keeping accurate score. Not the one who forgot to press ‘record’ when he made his birdie. Not this hapless mess of poetic whims. Not this barefoot on the grass walking, Pokémon catching, longing to know the stories of trees kind of not quite grown, ancient person. 

I dream of making it big, not making it up as I go along. Who would I be if I were a big wig? Justice Tayabali or the CEO of ... even my imagination can’t conjure up a business to run. My immunology consultant tells me to shake a leg and get on with my novel - can you park a novel for almost ten years and expect it to hold the faith? Meanwhile I am editing my nephew’s first novel. Or rather co-writing ... ‘Can you make the goblin king a gnome instead?’ he asks, plaintively, hoping I’ll fill the holes and weed the plot, and tidy the stragglers while he sleeps... and I do, of course I do. There has been a war between the goblins and the gnomes - but beyond implying there was a war, and there are wounds, the thought of further backstory is painstaking work for a ten year old. Or, frankly, an any-year old. 

But we make our choices. Don the whites and play for the team... or squirrel into the solitary union of a pen, an imaginary world and a galaxy of hope.

Photo : Smriti Mandhana, first Indian cricketer to represent India in 50 consecutive T20s... 

A FULL MOON LETTER TO MY FATHER

Dear Popsy,

I think it’s the full moon. It looks round and huge and yellow and all the better poetic words that escape me now because you are tucked up in hospital and I am here. I  took a picture which utterly failed to capture the moon, but a shaft of moonlight created an interesting axis, and I thought it looked like a planet, a galaxy, a reminder there is so much more out there that we can't see. 

Boy have I had a busy day. Yesterday’s laundry took ages to dry but I finally ironed all your Cotton Trader tops while listening to our beloved Marian Keyes on a podcast I love. It’s called GriefCast. And it honours those we have loved. Marian lost her father two years ago and the tears were in her throat and nose and laughter as she recalled the hours, the minutes, the funny and heart aching details. Some people are wonderful and we are so lucky to walk the Earth with them. IRT. In Real Time. I made that acronym up.

Pops, I cooked and then I cut up some mangoes for you. Sadly not Alphonso. And then I even taught Sister Tàn Viên English for an hour. She and Sister Linh Bào have written down your formal name and your informal name and will be sending Dr Tayabali (and Chotu) healing energy during the evening sitting meditation. Chanting your name. Lucky you. Lucky us. 

A butterfly got trapped in the conservatory last night, so this afternoon I tried to coax her out of the open windows. But I don’t know butterfly language very well. She came and sat on my dress instead. It’s a new dress, Pops. I bought it with my writing money - just as Sue recommended. Buy yourself a pretty new dress, she said. And it wasn’t that hard to obey! 100% cotton, embroidered. Made in India. By the Daughters of India. 

Clever you for diagnosing your own gallbladder infection. And for being amenable to getting the paramedics back in to whisk you off to A&E. Clever you for doing your exercises so diligently throughout covid so that you can rest deeply now and be sure you are strong enough when the time comes for you to sit up and walk and return to your garden. Which, I’ll have you know, I have watered and done mindful walking meditation in - my Buddhist retreat is still helping me so much now that I am alone and yet not alone. Do you remember my walking poem for Thich Nhat Hanh? I wrote it after he had his stroke. I read it to my sangha a few days ago. 

I hope the fevers start to subside. I hope the antibiotics do their good work. I hope your gallbladder heals nicely and Perveen can be at ease in heart and mind once more.

Love you, my Popsy, my Pops, best of the best,

Your

Toots

A GLIMPSE OF ETERNAL SNOWS

On a cold November evening, eleven years ago, Mum and I entered what used to be the Olde Post Office down the road (now our friend Sue's cosy, charming cottage), to attend a reading by Dr Jane Wilson-Howarth. The Book Club had invited Jane, GP and travel writer, to share her memoir, A Glimpse of Eternal Snows: A Journey of Love and Loss in the Himalayas, and when the reading and Q&A were over and we were chin wagging over snacks, I asked Jane if there was an audiobook version Dad could read. 

A decade later, Jane writes in her blog: 

It was an idea I’d been incubating for yonks, ever since Shaista Tayabali (@lupusinflight) suggested it when I spoke to her reading group. Initially I was too busy and distracted to get down to it, but eventually I began, having no idea how long it would take. My experience of reading out loud in writing groups meant I knew that I could narrate 1000 words easily in ten minutes, so although my memoir is quite a tome at 374 pages and a little under 130,000 words, it was doable. It couldn’t take much more than 22 hours, so recording it wouldn’t take much longer than a week or so.

Spoiler. It takes longer!!

Recording consumed all of March, April (when we evacuated to the UK), May and some of June and July. I had already decided to add various bird calls to begin and end each chapter. Some are Nepali birds, some are English, depending upon where the action takes place.

The whole project took longer than I expected but it has been a labour of love. A Glimpse of Eternal Snows is a book that is written from my heart so I’m sure listeners will enjoy it, as long as no-one is too appalled by my attempts at Celtic accents. Here's the link to Audible audiobook. 

I wrote about Jane on my own blog as soon as I got home, in a post titled The Good Doctor, wishing she were my doctor but glad, soon enough, that she became my friend, and recommended me to the BBC Radio Cambridgeshire presenters as an interesting guest! I helped edit Jane's memoir for the American edition, which gave me a chance to fully immerse myself in Jane's life in Nepal, where she and her husband decided to take their two sons, including baby David, whose medical frailty had been dealt with in the least compassionate manner by doctors from my own Cambridge hospital. Nepali life gave David three years of burbling happiness...

The one sympathetic hospital doctor in Cambridge had advised us to treat David normally and we took this as a licence to take him on his first trek; at the age of four months, we packed up David’s heart medicines and tubes and headed up over precipitous drops and wobbly rope bridges to explore drippy forests and medieval hill-forts. The mountains were spectacular and healing. Strangely David’s heart disease protected him from the effects of high altitude. Our arrival in each mountain village was heralded by choruses of, ‘Children have come!’ We’d be surrounded and David taken from his carrying basket to be handed around for all to cuddle. He glowed in all this attention. He smiled and burbled appreciatively at all his admirers. Nepalis helped us see David’s qualities and talent for laughter...

June will be here tomorrow and Dad will sit out in the sun, eating mangoes and listening to Nepali birdsong and enjoying a glimpse of those eternal snows I read about eleven years ago... thank you, Jane!