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.)

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...

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...

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.