EVERY BRILLIANT THING

I was watching the Korean drama, Romance is a Bonus Book, when, in the penultimate episode, our heroine Kang Dan-i, is horrified to find plagiarised translations of Johann Wolfgang von Goethe's epistolary 1774 novel The Sorrows of Young Werther. My face resembled hers in that moment, for a different reason. I had only just heard of this novel in the strangest of circumstances.

A week ago, my childhood friend Arzanne sent me tickets to a play. She had already attended it, and it had moved her so much that she wanted to share the experience. And it was an experience... I have watched plays online since quarantine began - Phoebe Waller-Bridge's Fleabag for Soho Theatre on Demand, where our donations helped to keep theatre cast and crew afloat during these audience-silent times, and Frankenstein with alternating lead roles between Benedict Cumberbatch and Jonny Lee Miller for the National Theatre at Home productions we have been so fortunate to enjoy free for a week each. (Frankenstein's monster also finds The Sorrows of Young Werther in a leather portmanteau... but that wasn't my connection). 

Every Brilliant Thing, a play written by Duncan Macmillan with Jonny Donahoe, does not require its audience to be silent. Would it terrify or invigorate you to be part of a play, your own participation fuelling the thing itself? A woman suffers depression. Her husband fetches her little boy to the hospital. That little boy must live, now and always, with the shadow of an unknowable beast stealing his mother from time to time. Macmillan's play has been traveling the globe, and the director/actor use the alchemy of their nation's idiom to alter the words but not the impact or emotion of the original idea. 

In Bangalore, the actor Vivek Madan, used to performing in the round, graciously invited our tiny screen faces into his home. Some of us had already been sent a word or a sentence - a brilliant thing on the list of the little boy who walks through darkness towards manhood, signalling for light with 1) Ice cream 2) Water fights 3) Staying up past your bedtime 4) The colour yellow... which reminded me of Albert Espinosa's memoir The Yellow World, and the yellow benches it inspired for sparking conversation between strangers... on and on to me at 521) Plinth (not the easiest word to wrap one's tongue around mid concentration!)

A thousand brilliant things... 2389) Baby elephant... ten thousand brilliant things... 10,000) Waking up next to someone you love... And somewhere, in the midst of that list, a book appears - the one that has for 250 years touched a raw nerve of how to be young, and filled with desire, and the thing you want not wanting you... and how, with that seeming failure, you exit the world, with violence and the poetry of your grief. The book has been banned for showing the way out, literarily speaking. 

I liked seeing the tall trees wave, friendly and rhythmic, behind Vivek as he moved with expert familiarity around his home, us in his home, known words on his tongue and making space for unknown words on our tongues... Occasionally, he'd call out a number and be met with silence... sometimes a zoom call is a fumble! What is worth living for? Many things. Who gets it right for a child? A counsellor with a sock puppet. Or an idea to record the good thing that lives between our fight or flight stress mechanism. Depression changes the chemistry of the brain of children... so should we lie to our children to protect them? Should we share the nature of the beastly growling lurking thief of happiness and peace of mind? I think it is difficult either way. And with that in mind, QTP, the theatre company producing the play, arranges for a mental health practitioner to join the audience at the end. How loving, how considerate. 

I liked seeing the sky darken behind Vivek, and then turn black. Night had come for him and everyone else watching in India. In my pocket of the world, sunshine streamed through the lilies and rose bush and the white butterfly pranced, keeping her promise to return to me year after year after year. The play was directed by Quasar Thakore-Padamsee, who, not enamoured of attempting an online theatrical experiment, was inspired to take that leap of faith by his fellow producer Nadir Khan, another childhood friend of mine. Nadir and his brother Darab were a brilliant thing when I was a girl growing up in Bombay. Two more brothers to add to mine, two more friends to make life worth living and memories worth holding dear. So many brilliant things, couldn't we just cry thinking about them? But we don't. Because we forget. Or make ourselves forget. Maybe your children could start their lists? And maybe your parents, too. 

Number 7,800,000,000) Us. You and me. 

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. 

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 

BRIDGE OF BALI OLD, BALI NEW

It's the difference between silence and sound. 

Just outside the bathroom a farm, with crowing roosters fluffing dust and gravel off their tails. The villa is harmonious with both breeze and screeching gecko. I hear each crackle and rustle as the rooster places his claw, regal even in this clump of fallen twig and dead leaf. 

The villa is silent of human sound. The other nine occupants have left on various adventures - water park, shopping excursions - I, lone wolf, among the ants and my words. 

I have been to Bali before; two years ago, in a villa like this, but with a koi fish pond and the beginnings of a raw grief. The rain gods began kicking up a storm from the moment we arrived. One night found me huddled on the cold bathroom floor, wishing away my barren life, wishing instead for a fertile womb, a baby. I wrote something that night:

34

Nothing bold. Perhaps the saddest year.

Certainly the loneliest. 

A storm outside does nothing to console me

inside, on the floor of a bathroom in Bali.

You will get everything you wish for.

Even sadness. Especially sadness.

That is the curse.

That is the price.

You would have been willing 

to pay anything (you thought).

Anything, but that. 

But that was then. And I am here now, a different self in the same place. The raw grief that haunted me has dissipated. I feel lighter. Not accepting, exactly, rather adjusting to each new discovery of a life less travelled in some ways, deeply traversed in other ways. All that matters is that I am here, now, surviving the wild heat and submitting to what will come.

WEAVING FOR CAMELOT

There she weaves by night and day…

She has heard a whisper say

A curse is on her if she stay

To look down to Camelot.

She knows not what the curse may be

And so she weaveth steadily…

"I am half-sick of shadows," said

The Lady of Shalott.

- Alfred, Lord Tennyson

I am half-sick of shadows too… Twenty years this month, since I last spent Christmas in India, where cotton wool replaced the snow on the fir tree outside our bedroom window (we could only ever reach the first layers of branches, so the tree always looked extremely strange and wonderful). This Christmas I don't want to think about commerce and duty, only the memory of the Red Cross choir who would come to sing for each house on our street, and for the candles lit and mangers built in every department of the hospital where my father consulted. Simpler times, authentic times - Santa was fun but not the essence. Jesus was, and so was light and hope...

Image from The Mag: Autumn on the River, 1889, John Singer Sargent