Tuesday, 5 September 2017

PICC LINES AND PENGUINS


Evening. The sun has set, I think. The day has faded away, and I haven't really paid attention. The twins left this morning en route to the airport and the next chapter of their life. I, who have been on a rollercoaster month of rocky infections, antibiotics and hospital admissions, feel jet lagged. Woozy with tiredness, I want to sleep for days without hours. But keeping time with the clock, they say, is important.

September is here. I had a birthday. My mother travelled to Vancouver to be with her two brothers at a wedding, and returned.


I had two PICC lines inserted and two PICC lines removed. Today was the removal of the second. My arm doesn't feel free yet. Still weighted with the memory of discomfort, it will take a while for the entry point wound to feel healed.

Other things will happen this month and the next. But until then I am going to crawl away and hibernate. Until then, here is a picture of me in Ellie's penguin hat, sitting, tube-free in the hospital Jubilee Garden...


Wednesday, 30 August 2017

SLEEPING BEAUTY (TRIES TO ESCAPE)

You know how all of us, or is it only some of us, are plagued by and plague each other by asking the perennial question, 'So, what do you DO?'

What do you do with your life? Not who are you in your life. Not how are you in your skin? Your mind. Your heart. But... where in the cogs do you fit...

A peculiar character like myself with the odd wolf disease is bound to feel on the defensive about what she does, because mostly she doesn't. 

But when I'm in hospital, you would think I'd be let off the hook for a bit.

I have been hospitalised four times this year with persistent infections. I've become too immuno compromised by the monoclonal/ chemo therapy; time for a break from it to give my immune system a chance to recover. The reality of such immunological machinations is, not surprisingly, that I am very fatigued. And need, and must, rest. 

And yet, the number of times I am teased by medical staff about sleeping in, in the mornings, is baffling. Does every other patient rise and shine, stretch and leap out of their narrow white beds to... do what? I was moved from my fateful room on N2 late last Friday evening. I am now in an enclosed room, with negative pressure controlled air vents circulating a draft eddy of mechanical air. I am on heavy antibiotics... and yet... 'sleeping beauty' they call me! 'Every time I've seen you,' sez the male nurse today, 'you've been sleeping!'
'What should I be doing?' I ask. 'Inventing a new gadget?' 


So I am trying like mad to occupy myself - painting Pooh in watercolour and pastel. Writing this blog post. Trying to look extra busy to account for the bizarre preoccupation of society even on the most isolated Infectious Diseases ward to DO SOMETHING DO ANYTHING JUST DO. SOMETHING. 

'So,' asks my consultant when she visits, 'what have you been up to in here? Writing anything? What are you working on now?' Gaaaaah 🙈🙈🙈🙈🙈

So I did do something. Only it was accidental. I pushed open the heavy door to my room, stepped out, ostensibly to discover when my next antibiotic dose was, and had a quiet mooch down the long unfamiliar corridor ahead of me. We are eleven beds on this ward, locked away from each other. I made it to the end of the corridor, and saw a portrait of Mary Seacole on the wall. Hello, Mary! 

I had reached the fire door right at the end, and while contemplating Mary, I leant against the door. Suddenly, a wild alarm set off, ringing around the ward. I put my hands up in true Crime Drama fashion as two burly male nurses hefted their way towards me. 'Sorry!' I bleated, and slunk away from the crime scene. 

'You won't be doing that again,' sez the same male nurse to me. 

Honestly. I just can't win. Back to bed, I think...

(P.s. In case you don't know much about Mary Seacole, the Jamaican British nurse who gave succour to many during the Crimean War, look her up. Now she really did DO many, many things.)

Monday, 28 August 2017

VERILY, WITH THE DAWN COMES HER BIRTHDAY

When we were little and Dad was teaching us the surahs, he encouraged my brothers and I to choose a favourite surah, one we could feel we personally belonged to. I chose Alam Nash Rah - not knowing anything about the dark nights that lay ahead nor the dawn that would bring ease. I just loved the musicality of the recitation, and the repetition of the line, 'Verily, with hardship, comes relief...'
ألم ناش راه لك 
و و دانا أنك وازرق 
... فى إن مال أسري يسرا 
إن مال أسري يسرا 
To this day I think of the surah as 'mine', not least because the pattern of my particular life has fallen into the poem of dark heartsore nights and gentler tender dawns.


Mum and I were supposed to travel to Vancouver for my cousin's wedding. Rizwan and Angelina were bringing the mice to keep Dad company. And then I started to spike fever. By the time I was recording 38.4 degrees I knew jumping on a plane was looking less than likely. For five days, the Infectious Diseases team treated me with IV antibiotics and, with no fever in sight, discharged me. A day later I was spiking fever again, and the day after someone from ID called to say the microbiologists had picked up campylobacter in my bloodstream, an oddity, and readmitted me through Accident and Emergency to the exact ward, the exact side room into which I was incarcerated in 2009 from February to June - the place that inspired my blog to become what it became, the place that forged the person I am today, whoever she may be. 

I was admitted the night of my birthday. Rizwan stayed with me until just past midnight to wish me and hand deliver the cards written by my twinnies, and later that night when Singapore awoke, I had a video from my other munchkins singing me happy birthday in English, Mandarin and Malay! Angelina baked me a three layer chocolate cake with cream cheese frosting and the girls decorated it with sprinkles... 






Meanwhile across the oceans I practised a little art of deception - we had all chivvied Mum to get on that plane alone. You can imagine her reluctance at leaving her daughter in hospital. While I was being readmitted, while the IV antibiotics were being fed through me, faraway on a hilltop in North Vancouver, a beautiful Parsi engagement ceremony was unfolding amid garlands of flowers, and pretty lanterns anointed my uncle's home. I'll just tell them tomorrow about the hospital thing, I thought, so long as they don't video call me!!

Time enough, time enough. Not always, but sometimes, there is time enough for everything we dream about, hope for, and even, are surprised by. Rizwan and Angelina bought me a beautiful salwaar kameez intended for the wedding, but when Angelina told me to wear it anyway in hospital, I did...



Irfan and Theresa sent me an eye mask with headphones cleverly attached so my photosensitive eyes are protected from glaucoma glare, and I can escape into Philip Pullman's world, into Georgette Heyer and Marian Keyes' worlds... 

I've had two PICC lines surgically inserted in a short space of time, so I feel tender and 'cloudy' to use Clive's description of me. We might be doing a poetry reading together late next month if needles and toes align. Until then, a cheery cloudy farewell from N2. Home soon, I hope...


Friday, 25 August 2017

THE WATCHERS

You could crick your neck in here,
Waiting for their arrival.

The slats let little in. Light
From the other side is thin.

Every footfall, every apron
And pair of plastic gloves rustles

In warning of their imminence.
Their eminence, one might think.

My heart is grouchy today,
A tired, scrappy thing; cross

About the new PICC line they put
In. Peripherally Inserted Central Catheter,

In case you were wondering; a long, soft
Tube snaking in to the Superior Vena Cava,

Indwelling, one hopes, temporarily. Tea lady
Now, cleaner next, obs third, and on the neck cricks

On the neck cricks on.  
(c) Shaista Tayabali, 2017 Included in Dverse Poetry Pub's latest Open Link Night...

Sunday, 13 August 2017

THE MYSTERY OF MAUDIE

Most of my friends know by now that I am the sort of movie watcher who almost attends a film school of her own, so dedicated am I to catching films at the Arts Picturehouse Cinema in Cambridge. It is a cosy little three screen cineplex, each screen snuggled up to the next, and all tucked into the smallest edge of a building. I visit it as you would a library - while returning one lot of books, your eyes spy a new possibility. In my case, Maudie, directed by Irish director Aisling Walsh. 

The tender biopic reveals the unamorous coupling of Maud Lewis, the Nova Scotia painter and her fish smuggling peasant Everett Lewis. Maud's life would move anyone to tears - born with juvenile arthritis that eventually crippled her, she was also betrayed by dishonourable members of her family who sold her precious newborn for money, telling Maud that her baby had been born deformed like her mother and buried immediately.


Years later Maud learns the truth. Everett takes her to see her baby, now a grown woman, happy, tending to roses outside the white and blue shutters of her home. Maud cowers in the shadow of her husband's truck, broken and healed, simultaneously.



The shadows of Maud's life are painted over by her extraordinary capacity for wielding joy into simple brushwork. Deceptively simple. Her work began to sell, began to be loved - passers by to her tiny, wildly decorated house, were enchanted. She was commissioned by the likes of Richard Nixon, then President of the United States. 









In my own little cabin in the garden, I have been wielding my brushes and paint. Every dark or gloomy corner now has a fresh white or blue coat, reassuring my eyes of light. The past week has been a complex one to navigate - I had a slender catheter surgically inserted into my vein, one end hanging outside for me to self administer liquid antibiotics, and the other end resting atop my heart. Self administration makes me respect my nurses even more than usual - so many little details to concentrate on; air bubbles and contamination to be careful of. Twenty eight injected infusions done, two to go. Unless the doctors decide otherwise.



By the end of her life, Maud was crippled with arthritis, unable to walk, but still able to hook her brush into the curled claw of her hand, and do the thing that made her utterly content with her life. Paint pictures. The whole world framed in a tiny square of happiness. To be an artist is to know suffering, but to know beauty and joy more. 




Sunday, 16 July 2017

SUNDAY LISTENING

The first was the writer, Vikram Seth. Dad called out to me to come listen. Seth was being interviewed but in between conversation he was picking out tracks of music, and not books. The combination was so much more illuminating and I was hooked. Then came the dancer, Akram Khan, and then the doctor, Atul Gawande... you might think this a particularly Indian immigrant selection, but those were the voices I remember. They spoke to me and drew me in. Now my Sundays are Desert Island Disc days. And oftentimes the discs weave into my weekdays, into the threads of my own narrative. Today, for example, is a John Agard day, moving from Kate Bush's 'Wuthering Heights' through Bob Dylan's 'Shelter from the Storm' towards the Calypsonian Lord Invader's 'You Don't Need Glasses To See'. And through it all his thoughts on poetry, on being the only Afro-Guyanese Queen's Gold Medal Winner for Poetry, on being part of the GCSE syllabus, on his teachers, his daughters, on being a 'joker' as a young boy...


I stopped listening to, or rather seeking out music, some years ago. Too much of my past is caught up in music and peace of mind is often a choice between memory and silence. I credit these brief interludes with strangers who become anything but in the hour in which they share a loose web of geography, history, parentage or parenting, grief, loss, enormous successes, imprisonment, exile. I have my favourites even though the list keeps growing. The archives are a well of treasure. Dip in! Whose eight tracks would you like to hear while discovering their life story? I love...

Aung San Suu Kyi, the only guest who didn't come into the studio for obvious reasons - something about Kirsty Young being in Myanmar, sharing a moment in exile with the Burmese freedom fighter, makes the entire programme magical...


Alice Walker, one of my earliest literary and poetic heroes, the one who set my voice on its path to claiming a fully formed womanist self...


Dr David Nott, vascular and war surgeon, who made me cry because he cried...


Bryan Stevenson, a human rights lawyer focusing on the brutal percentages of incarcerated black men in the so-called United States...


Poets, activists, philanthropists like Bill Gates (whose choice of wife is really what inspires me about him!), Sigrid Rausing, journalists Alex Crawford and Christiane Amanpour, musicians, physicists... in a world where media is desperately trying to colonise our minds and make us afraid of each other, Desert Island Discs provides a counter-narrative, casting us towards one another rather than isolating us. I find the gift of the Bible at the end an interesting moment - yes, occasionally a Sikh will choose the Guru Granth Sahib or a Muslim will choose the Quran, but no one really resists this aspect of the programme. What does it say about the programme that in a determinedly atheist society, a Holy Book is one all castaways are cast away with?

Have some music while you're here... this is South African singer and anti-apartheid activist Miriam Makeba with 'Pata Pata' ('Touch Touch' in Xhosa) and if this doesn't get you dancing with a smile on your face this rainy day, nothing will! Turn that volume up and let's dance!

Sunday, 25 June 2017

MOONLIGHT (a review)



In Moonlight, Black Boys Look Blue. This was the original title for Barry Jenkins' Oscar winning film 'Moonlight'. The film was based on an unpublished, semi-autobiographical play written by Tarell Alvin McCraney. I missed it during the pre-Oscars season buzz, so when I saw it playing for one day only on a random June afternoon, I jumped out of my lethargic skin and dove into the empty cinema. After the film had started I was joined by a group of three strangers, but I pretended it was just me and Chiron. And some popcorn. (It wasn't a popcorn eating type of film, but hey, where else am I gonna eat popcorn?).

Moonlight is a triptych. A piece of art. The sound of the sea begins the film, and a seaside palette of Provence blue and daffodil yellow bathes our eyes at unexpected moments, so you begin to float, suspending fear, anxiety, prejudice. You are 'Little' Chiron, held loosely but safely in the hands of Juan. Mehershala Ali won that Oscar because even though his character mysteriously disappears a third into the film, you feel his ghostly presence throughout. Weaving in and out on classical strings, Cuban and hip hop beats. 






But at the same time that sudden absence also made me tighten up, and I couldn't relax into the lyrical beauty. I wouldn't let myself cry until the film had ended, the credits were rolling and I realised Barry Jenkins had kept us safe throughout. I don't think I've ever talked to a film director in my head before, but I was willing Jenkins not to let me, us, fall through all the cracks we already know exist for Chiron and his kind of invisible blue blackness.
'Moonlight' is as serious as it gets and as loving. The two faces of woman in the film aren't polarised through moral judgement. They are just being themselves - human, fallible, trying. Failing, losing, surviving. Loving. Speaking of love, I think I'll watch anything with Janelle Monae - she has such a fierce, feisty, authentic presence here as in 'Hidden Figures'. And Naomie Harris - from Bond woman to crack addict - a powerhouse performance.




There is a moment at the beginning of the film when little Chiron looks up at Juan - a side along gaze that asks with big eyes, 'Who are you?' Why should I trust you, say those eyes. When Chiron's mother meets Juan for the first time, she looks at him, eyes heavy with suspicion. 'And who is you?' Juan replies: 'I'm nobody'. And finally, towards the end, the second love of Chiron's life, Kevin, asks the same question: 'Who is you?' And with that question, there is a chance for Chiron to not answer: 'I'm nobody'. He is being offered a chance to be somebody. To someone. 
'Who is you?' is the heartbeat of the film, echoed, mirrored. We grow up and into ourselves, and some of us get to be loved by people who ask that question of us, who listen for the answer. Who wait for the answer. Even when it changes. 

Saturday, 17 June 2017

INTERRUPTIONS


In the middle of a YouTube interview with
Zadie Smith, and therefore the middle of
my own imaginary conversation where it's
really me interviewing Zadie Smith or being
interviewed beside Zadie Smith, I pause.

Birdsong is emanating from my father's room. 

(C) Shaista Tayabali, 2017

Sunday, 4 June 2017

MARIE KONDO AND THE SPARKING OF A CERTAIN JOY

for Richard, who misses my blog posts

It seems strange to speak of joy, or write of joy, when all around us joyless events directed by joyless people rip at the fabric of our lives. Every day I look about me and give thanks for clouds in the sky, and not drones, for roses beginning to climb our trellis, and not militia, for my mother loudly shooing away the muntjac and a squirrel I've named Nutkin, rather than... anything else. None of these are small things. They constitute the biggest thing of all - freedom. A word that almost feels sacred now. Almost like superstition. Better not utter it out loud, in case those that lurk in the dark places encroach upon your light. 


And yet of course this is the paradox of a life like mine: if you keep small, and hide away as much as possible, tending to the bird feeder and sorting through your books, you wonder if after all you ought to be trying for the other life, the one with the spotlight and the megaphone, denouncing hatred, fighting for rights, yours and those denied others. Then your body reminds you of its tumultuous nature - scar tissue, antibiotics and a twenty year long fight to stay alive.

Into my small but sweet life, a fellow patient gave me The Life Changing Magic of Tidying Up by Marie Kondo. My friend is Italian so the book was actually called Il Magico Potere Del Riordino. It was her personal copy, with notes to herself inscribed in pencil. It has taken me a few years to actually begin the process of tidying up my life in the specifically thorough way offered by Japanese tidying expert Marie Kondo. The KonMari method.


There are two books, actually. The second is called Spark Joy: An Illustrated Guide to the Japanese Art of Tidying, and this one is filled with delightful illustrations. There is a certain order to the process but always the same outcome - to spark joy from the tiniest of your possessions. Gather your belongings into their particular categories. Hold each object in your hands, and consider it. If the time has come to send it on its way, thank it before you despatch it. [The first edition was given to me by my friend Angelica, and the second guide by my sister Angelina. I take my angels where I get them.] 




















I find myself telling people truthfully what I am 'up to' - facing that dreaded question of 'What are you doing now? Have you published your book yet?' If only writing a book and publishing it were as natural a pair of siblings as we imagine when first embarking on that book. I have tentatively begun the second - never mind what it's about - but first, I have a date with a woman named Marie, who is leading me towards a certain joy. 

Friday, 5 May 2017

THE BUTTERFLY HUNTERS


Butterflies attract butterfly catchers;
Young men with invisible nets
Seek to imprison young women
With the desire to fly.

The ability to escape from such perils
Is an advantage acquired only by time,
(Not wisdom, but experience). Such men
Must be eluded at all costs.

If butterflies must be caught -
And really, why must they? -
Better to do one's own catching.

(c) Shaista Tayabali, 2017


Artwork: Catching Butterflies, French, late 13th century & Berthe Morisot (1841-1895): 'The Butterfly Hunter'.
Poem linked to Dverse Poets for their Open Link Night.