Friday 22 February 2019


The life I wish to live,
lives on the other side of this:

Maribeth removes the cannula 
from the back of my writing hand,
but my nerves still remember Rachel’s
on the inside of my right wrist.

Seen or unseen, these veins connect,
mapped in despair together. 
Mind is the beast to conquer, they say.
Hubris, I say. Body holds equal sway.

Memories exist in the pockets of cells,
passing down the tales.
So nobody forgets. No body forgets.
And the mind is never tamed.

The life I wish to live 
lives on the other side of this.

Perhaps I live it in the wish?

© Shaista Tayabali, 2019

(On the one hand, I am privileged to be taken care of in an excellent teaching hospital by skilful doctors and deeply caring, efficient nurses... on the other... well, on the other ... is a needle in my wrist, a PICC line in my arm, twenty tablets needing to be swallowed... but if I may borrow a third hand - yours - there is also spring... and crocuses... and summer to come... if I am weepy for now, bear with me, as winter bears up till spring.)

(Gathering for Dverse Poets)

Thursday 14 February 2019


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.