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...)

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.