IN SEARCH OF DELIGHT

With every year that passes, I seem to accumulate a smaller number of blog posts. I think this is the inevitable fate of The Blog as a vehicle for our thoughts. Technology intruded in its rapid way and demanded a change - but for the writer, all the modes of transporting thought to word remain alive, however strained the thread.

It has been a very difficult two months. The beloved friend I wrote about in my last post, Victoria, would have read this post, but for her life in this human form taking flight on the 29th of August. A month later, Dad, who had been having trouble with infection in his ears, had episodes of losing consciousness, developed a high fever and was hospitalised with E.coli sepsis on the 18th of September. Here we are, at the end of the month and Pops is still in hospital. His infection markers have all returned to normal but his hearing has not. Communication has been a struggle but he is as ever graceful, remarkable and heartbreaking in the loveliest of ways. Dad, I miss you horribly. Come home soon.

In between, my brothers and Mum's brother have visited and done the supportive work that makes family continue to be family. In between, a young boy cycled up to my house and seeing a handbag unattended, stole it. This is the intersection of being human. My lapse of judgment in doing a careless yet trusting thing - oh it's a young boy I've seen many times before, cycling up to ask if he can wash our cars, I can leave my bag unattended, the front door open while I dash out to the back for... what? I cannot recall now, as I was waiting for friends to take me to Victoria's funeral. In my bag was my mobile phone - which, once upon a time, might not have impacted my life too much. But, today, our little devices hold worlds within them. 

I had a bone infusion yesterday. I picked up a cold a few days ago while at the hospital with Dad, so I feel rather heavy and my eyes feel bleak. But Dad is sitting up, practising his standing with the walker and I have hope returning for the first time that we might bring him home by the end of next week. In the meantime, I am doing the homely things of cooking meals for Mum, chicken soup for Dad, laundering clothes from hospital and watering the precious indoor plants that Mum tends to with a far greener thumb than my own. I just pat them on the head and apologise and they pat me back and say they understand. 

In the meantime, I have rewatched several old favourites... aren't movies one of the greatest reasons to stay alive, stay reminded of why we are and who we are? 'The Young Victoria' is sumptuous in its romantic portrayal of her courtship with Albert, 'Mrs Harris Goes to Paris' is delightfully Parisian in her search for the dreamiest Dior gown and 'Miss Potter', one of my most favourites... not only for its charming illustrations of Jemima Puddle-Duck and its central character being the excellently feminist Beatrix Potter, but also for the sweetest musical refrain... 

'Let me teach you how to dance,

let me lead you to the floor;

simply place your hand in mine,

and then think of nothing more.

Let the music cast its spell,

give the atmosphere a chance;

simply follow where I lead,

let me teach you how to dance.'

 

THE YEAR OF YES

I originally wrote this poem in response to turning down the opportunity to join my mother and her darling friend Victoria for a walk. I was tired. Maybe I’d recently had Rituximab. I sat in the doorway instead, waving off my friends. And soon found myself writing a poem about how I regretted saying no! These days, Victoria is the one unable to go for long walks among crunchy leaves, and the inevitable bump into a friendly soul for a catch up. Village life occurs in the entwined casual conversations that spring up on summer or autumn walks…and hospital life puts an end to those. It is a winter of sorts, a wintering of a life well lived.

                               I wish I had said Yes!

                                          beloved,

                      When you asked me out to walk

among the leaves,

the turning leaves, 

You were offering me

the sound of dreams,

And I turned you down, politely.

Not today, I smiled.

Perhaps, maybe, tomorrow?

But I wish I had said Yes!

beloved,

I wish we had shared this light.

Next time, don't ask.

Just take me!

Order me to dress!

I am going to need your help,

beloved,

To begin the Year of Yes.

 

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.

WHAT FREEDOM LOOKS LIKE (POST LOCKDOWN 3)

This morning’s strange dreams were interrupted by a phone call. ‘I’m going to make you very happy,’ said my immunology nurse (after commenting on my sleep roused state). I knew what was coming. ‘You can go back to IVIg at the hospital in two weeks.’ 

Hurrah hurrah! This is what freedom might look like for me. I received the official government letter informing me that as a clinically extremely vulnerable patient, I could stop shielding. All the same, they said, please still take precautions. So it didn’t seem like freedom would look any different. But this ... release from weekly thigh infusions to monthly arm infusions - oh this might spark the cocoon to stretch and poke a wee wing out, test the currents of air, and who knows? Take a small merry flight. Where? Who knows? Tops of trees? How high do butterflies fly anyway? 

Meanwhile, my nephew turned TEN... 

Meanwhile, my friend Suramya sent me E. H. Gombrich’s ‘The Story of Art’, and I am up close and personal with Dürer (hare, 1502) and Rembrandt (1637)... 

Meanwhile, I am life drawing with my mother every week, attending classes on Feminism and Plants (Ecological Decline and the Rise of Witchcraft, anyone?) and this weekend, I shall be in France, in Plum Village, with the Zen Buddhist Nuns of Lower Hamlet, practising mindfulness and reconciliation. Ok, maybe not actual France... France/ Vietnam through a zoom window. We take our freedom where we can, right? 

GUEST POST : IN THE LAND OF TORIA

While I was in hospital, my friend Victoria sent me photographs of her garden. There are gardens in my hospital, one in particular that I claim as my favourite, but while in a shared ward or private bay, there is no green to be found. Blue and cream aplenty but no living, moving green. So I thought I would share Victoria’s photos with you, with her permission, so you can see what cheered me...

Of course there are other ways to escape while in hospital. My new friend Mary, with the wandering mind, was not in Addenbrooke’s at all... she was in Selby in Yorkshire, and sometimes in the mining and weaving towns of her youth... sometimes she would give me directions to the cemetery nearby and sometimes she accepted that I was not real, I was a visiting spirit to whom mundane things of the mortal world would be of little interest. ‘How long have you been here, like this?’ Mary asked, her hand fluttering, indicating my other worldliness ... ‘Oh, I come and go,’ I answered. We spoke exactly the same language, Mary and I, both of us being of this world and not of this world. It’s all very mysterious, we both agreed.

When I was finally discharged I said goodbye to all my ward mates except Mary. I couldn’t bring myself to utter the finality. Mary had said I would return to her mind from time to time, and I told her I would never forget her. Mary Longbottom of Selby, Yorkshire. So why say goodbye?

(All photographs, except the last, by Victoria Kingsley-Pallant)

NEW NORMAL, OLD NORMAL

My cousin Barbara asks me if I have been writing lots of poetry. It struck her the other night that there was poetry in this, this time of strangeness, of discovering one's ability to adapt, perhaps - the beauty inherent in that. And indeed, Carol Ann Duffy has just initiated a project titled 'Write Where We Are Now', gathering the thoughts and feelings of her fellow poets on our global viral tidal wave. We surprise ourselves with adaptation, and it thrills us to discover - still here, still here. No matter what. Tsunami, earthquake, the plague, coronavirus. The Great Depression, Wall Street Crash, demonetisation. The end of circuses, the beginning of Tiger King. The end of letter writing, the beginning of emoticons. Lose limbs, become an Olympic athlete. Hospital a dangerous place? Self inject.

What gets lost in the adaptation? The transition. The nuances within those transitions. My anxiety before the sub cut training, my sleepless nights. My terrible sense of the cold once I had penetrated my flesh, in two different sites, slowly, each ml a painful new reality. 'You'll get used to it.' 'Some people love it.' 'You won't even feel it.' Later, someday. You'll be like the others. Who smile and laugh and brush this off. It's nothing. Nothing. Nothing.

The extremely vulnerable must continue to isolate. It is for their own protection. Meanwhile we rush to open our vital economies. Our schools. Life must be returned to normal. Meanwhile there is a rush on Hydroxychloroquine. India closes her borders to exporting the raw materials. Poor lupus patients. Meanwhile it's possible that doesn't matter because being on immunosuppressive therapies may explain why auto-immune patients aren't dying en masse. You're fine, lupus patients. Your cytokine storms aren't as wild and intemperate as ours. As you were. But all the same, stay home afterwards. After our storms subside. Our bodies are the frontlines. We will protect you. We may also infect you. Just stay quiet. With that needle in your flesh. It's for your own good. The front door is your safest bet. Behind that front door... well, never mind that.

That sense of cold I mentioned? It is the place of loneliness, of abandonment. Of being protected for one's own good under strictly controlled guidelines. Of the new normal being the old normal, only with an edge. An edgier edge. But it must be contained, or else our little cup of sunshine will be consumed with the single thought that threatens to destroy us on any ordinary day. The lupus patient was never meant to survive.

And yet she does, with a paintbrush in her hands. Where poetry fails me, I paint my reality. Back and forth. Wax on, wax off. Until I become something akin to the Buddhist novice, who, in elevating a simple monotonous task with consciousness, finds nirvana.

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.      

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...)

HAPPY (?) WORLD LUPUS DAY 🦋

I never quite know what I’m supposed to do on a day ‘celebrating’ such a dastardly disease - or perhaps it’s just for enlightenment, for awareness... not that I ever remember. When I told Mum it was World Lupus Day, she asked me, ‘So what are you doing for today?’ And I replied, ‘I am enjoying my life today.’

Which I am. I wore enjoyment in the form of colours, bright lime green nails and shoes, and a rope of beads around my neck, a craft present from my beloved Mary Haybittle - for rainy days with the twins - can't remember which twin made this particular one - and the nurses were very complimentary. Colour has that effect in hospital.

I pretended my NHS coffee was Real Cawfee and later, when I was free of the cannula, I took myself off to the Jubilee Garden for a few sunshiny moments.

When I rang Mum to ask if she’d fetch me home, she said the iron had packed up and could we go to Sainsbury? 'Mais oui,' said I, placing the beads more prominently to better enjoy the freedom of being me on this day, May 10, 2018.

Did I wear the beads, headdress style, at Sainsbury? Bien sur!

Here is a little video wave I made in the hospital garden, just to say hello 👋🏽

CROSSING THE CLOCKS TOWARDS HAPPINESS

Happy National Poetry Day! I recited two poems at the Addenbrooke's hospital chapel, which Mum recorded (albeit slightly shakily). It was fun to see the main entrance to the hospital festooned with lines of poetry, written in chalk on the cement and strung up into bunting flags. It was not much fun to witness the terror and repulsion of some people when they were offered poems. 'Would you like a free pome?' I asked nicely, naively. 'NO!' was the short sharp response. 'Yikes!' I may have said. 'Any reason?' 'I just hate it!' 'Er...right,' I stammered, 'since when?' 'Since they rammed it down my throat at school.' 'Fair enough,' I produced, cravenly, and skulked back to my friend Kaddy Benyon, who had warned me. She'd been at it for far longer than I. Never mind. The reading itself was lovely.

It's strange the way life circles. The first time I visited this chapel, I was in a wheelchair. That was eight years ago. And today, an extraordinary thing - after the reading was over, a woman in the audience said she recognised me from eight years ago, from my time being incarcerated on the Infectious Diseases ward for months. She said she was glad to see me walking.

Also, my surgeon came - which was very supportive of him - and immaculately timed to perfection, catching the poet before me, me, and the one after me, who happened to be the last poet of the day. Must be a surgeon's skill.

POETRY READING: ADDENBROOKE'S CHAPEL

Thursday 28th September at 12:30 - 1:30 in the Addenbrooke's hospital chapel. Are you free?
Oh, I haven't told you why...

It's National Poetry Day, and Addenbrooke's Arts has an ongoing project called Taking Note: Poetry in Moments, during which an emergency poet, Deb Alma, will be on hand to hand out poetry as prescription in her 1970s original ambulance, poems on postcards will be handed to you or placed on your coffee tray at Costa, and yours truly will be reading her poetry along with several other poets including Kaddy Benyon, Eve Lacey, Jo Shapcott and Rebecca Watts. 

I've always wanted to be part of the artistic life at Addenbrooke's so this is really one of my dreams manifesting into reality. I hope it will be a fun day. I shall tell you all about it when it's over...