Wednesday, 19 October 2016


For some years I stopped actively seeking out music. I'm not sure why. Music is memory, and not all memory is happy or sad; some memories are layered with depression, anxiety, fear, loneliness. Lately though, thanks to Desert Island Discs, I have found myself returning to music. I love the unexpected choices. I find myself delving deeper into the archives, particularly glad when I discover philanthropists like Sigrid Rausing and humanitarian activists like David Nott, vascular war surgeon. My favourite episode is with Aung San Suu Kyi - I think it is the only occasion when the interview takes place not in the BBC studio, but in Burma, in Daw Suu's home.

These days I am inspired by Amal Clooney, international human rights lawyer, currently attorney to a young 23 year old Yazidi girl, Nadia Murad, who managed to escape her captors and be smuggled out of Mosul to Stuttgart. She has recently been named a UN Goodwill Ambassador, but of course this involves her telling and retelling the tales of crime that were committed upon her person, and the bodies of thousands of women still remaining in the camps.

A friend of mine asked if I wanted to be part of a new book club; the first book we read was Hanya Yanigahara's A Little Life - a book that divided readers last year. Some thought it relentless in its portrayal of the suffering of its central character, Jude. And others, like myself, though no less fatigued by such a detailed rendition of a broken life, found truth in a narrative that does not see its way to an easy resolution. Nadia Murad may have escaped ISIS, but she will never be able to forget. We, in our lives of comfort, safety and daily entertainment, may find it a little too easy to imagine that suffering can be papered over. Especially the suffering of girls, of women.

And so to remind us to shore each other up, and stay alert and conscious to the ever present denigration of girls and women, we have our big sister Michelle Obama, a truly admirable mentor, to speak for us. She reminds us we are right to hold our boys and men to a higher standard than those among them who enslave, assault and abuse with impunity. Some of us, Michelle and myself included, and hopefully you too, reader, know men with integrity, refined intelligence, kindness and a strong sense of justice. To them we turn and hold out our hands. In the fight for human rights, we need each other. We have always needed each other.

Tuesday, 11 October 2016


It is silly for the wave
to long to be merged
with the big ocean
and the wide open sea.
She is the ocean.
She is the sea.
           Does that mean
           she can never be free
           of their tumults
           and their authority?
           Where, in all of 'their',
           is she?

Best to evaporate

           and nestle, a raindrop,
           on an old oak tree,
           sheltered from storms,
           cupped by leaf love,
           a sweet, refreshing

© Shaista Tayabali, 2016

Today is Thich Nhat Hanh's 90th birthday. I am remembering my week at Plum Village in the Dordogne, when I was part of a wonderful dharma group - here I am tucked under the wing of Sister An Nghiem (Sister Peace), an African-American nun who left Washington's mayoral office to actively work for peace and change. We need to concentrate on our change makers and our peace workers so we can remember the best of who we are. Thây has always been that for us. Happy Continuation Day to our beloved gentle monk!

Thursday, 6 October 2016


They came. They conquered. They left. With a piece of my heart tucked into the soles of their feet.

Last night, around 2am, the owls were busy tap dancing on the roof of the Coach House, the converted garage I have called home for the past three years. I thought of Raf, who sometimes worries about me in the midst of all these owls. But he understands I'm nocturnal. 'I'm nocturnal, too!' he declared, last summer in Portugal. He was four then. At five, he is now a skilful Pokémon catcher. One sunny day, he and I combed the entire village, collecting measly Pokéballs at the phone box library and finding mostly Rattatas and Pidgeys (and a Mr Mime!) - he got stung by thorny ivy snakes, was shocked to discover roses have thorns and the duck pond from last year seemed to have vanished, so all in all it was 'the worst day, ever.' 
But! We met an orange slug. Have you ever? Bright and burnished, it looked nothing like its ordinary grey camouflage-ready mollusc cousin - Raf and I were gripped by the drama. Of course neither of us knew we were looking at Arion vulgaris, the cannibalistic roadkill eating variety. Arion vulgaris - what a name! I'm quite partial to the term vulgaris because in the late thirteenth century that is how lupus was referred to - lupus vulgaris.

I didn't blog last month - one of the rare months of complete absence. I have been struggling with chronic tachycardia most of the year. I hope there is nothing too sinister, cardiologically speaking - fingers crossed, anyway - but at the same time, almost twenty years of lupus, steroids, chemo and immuno therapies have no doubt taken their toll. My heart is overworked, but never under appreciated. Did I tell you I've finished my book? My last chapters are all dedicated to my heart, wondrous organ that it is. 

While the smallest loves of my life are far away in other countries, I am head down, writing to publishing agents. I rise to meet the day and either crumble back to bed or send my book with love to strangers. Wish me luck as I wave it goodbye!

Thursday, 25 August 2016


Have I mentioned I've been writing a book for the past couple of years? A few weeks ago I completed it and am now sending it to agents. Fingers crossed, mes amies! George Orwell once said, 'Writing a book is a horrible, exhausting struggle, like a long bout with some painful illness. One would never undertake such a thing if one were not driven on by some demon whom one can neither resist nor understand.'

When your life is already 'a long bout with some painful illness' writing a book is double trouble. Orwell's words have been of great comfort to me. A raft keeping me sane and self-forgiving. I love when writers share their lived writerly experience - it is so friendly.

For my birthday I decided the friendliest thing I could do for my worn out mind and body would be to book myself into a spa. I chose The Bedford Lodge Hotel & Spa. Knowing it would be no Balinese Shangri-La, I kept my expectations low. But it was magnifique. The Spa isn't overtly fancy, and for the first time I truly appreciated how simplicity of form in architecture and design can be beautiful.

Edith Piaf accompanied me through most of my stay. In the steam room, in the lunch bar, she rolled me up in her trills. Songs of the knowing heart.

Lunch was a jungle of rocket, avocado, orange segments and sweet potato. So this is how sweet potato is supposed to be cooked, in petite squares of delicious goodness. Mind you, after a while, chewing rocket and salad leaves can feel never ending. How do cows and horses do it? 

At the hydrotherapy pool I cannot contain my laughter when jets and bubbles nearly whirlpool me across the water. I have no cool at this point. Who cares? I have already embarrassed myself by not being able to open the steam room door (the steam had practically sealed it shut!) or work out how to turn the shower on. It took a long, long time to decipher the knob had to be twisted left not pushed. Sigh... all the while caked in five shades of mud...

It was a busy time with canoodling couples, mothers with their about to be married daughters and best girlfriends taking time for themselves. I didn't feel lonely at all. First because I had spent half my birthday with Mum and our beloved friend Victoria...

And later because I had Albus and Scorpius from the new Harry Potter to accompany me; but at dinner, when dessert arrived with Happy Birthday lettered across the plate, a couple decided I could not be alone on my birthday. They insisted on buying me a glass of Prosecco, and as the night wore on, on listening to some of my poetry. I recited three poems and was thrilled with their response - neither of them are readers, neither of them expected to like, let alone love, poetry. They wanted a birthday poem but I hadn't written one yet, so I recited the poem I wrote last year. Here it is...


Which means my birthday
Which means a beginning 
And an ending.

Months pass between poems
That don't resemble poems

Because there's too much noise 
And poems were always about silence 
On the inside.

These are the days of
Inside, Out.
And noise.

One hundred years have passed
And will a hundred more?

Here I stand.
Here I stand.

And the tide is slipping,
Pulling away from me.

And I will catch up

Tuesday, 16 August 2016


So there I was minding my own quiet business in the Shire when I received a call from the diversity casting researcher at Channel 4 - she had been reading my blog and was impressed enough to consider me good TV material! Out of all the subjects I could have imagined this TV documentary to be about, the very last would have been a cooking show. I was so taken aback to be scouted for 'Come Dine With Me' that when she asked if I had a few minutes for a questionnaire, I rolled right with it.
So Shy Star, do you give many dinner parties? Er... no.
If an ingredient went missing would you freak out and be super stressed? Er... no?
Who would be your worst nightmare guest? What quality would you hate in a guest? What's your most annoying quality? What would people say is their first impression of you?

And finally, Shy Star, what will you be cooking for us?
By this point I was sweating, brain fried and hysterically laughing - Er... fusion cuisine, I fronted. With lavish amounts of fruit; avocados would feature. How would I entertain my guests to break the ice? Oh, with cocktails and charades, I said peppily, really going with the spirit of the thing. Knowing that when I put the phone down and soberly discussed the 'opportunity' with my parents my surreal encounter would dissipate.

Strange things have happened to me in my life, but this is high up on the list of strangeness. I coulda been a contender, you guys! A few weeks passed after that first call and then another casting researcher approached me yesterday. This time, head more firmly screwed on, I averred, politely but with alacrity. Talking about books, writing poetry or living with lupus, these I shall happily be on TV for - but whipping up four courses of a meal for four strangers and a film crew - almost famous will do nicely, thank you.

Although I am touched that the first lovely casting researcher visited my blog, took the trouble to read me and thought me admirable, I will always much rather be cooked for than cook for - a shame I am learning to take on the chin. My apologies to all my friends, and particularly my cousin Imran, who is still awaiting a dinner invite...

Photos courtesy C.Barrere

Friday, 8 July 2016


My father knows when great men 
were born, and when they wrote
the works that brought them fame.

When empires fell, and why
our history books fail
us, time and again.

He teaches me how to listen 
for the silences, the in-between states,
the graceful exits of saints.

Two birds fly past me
and out of sight. My father knows
when the birds come, and when the rain.

Watch for the thread, he says, 
and I see it. I feel it strain, trying to maintain 
our broken wings, our feathered remains.

We are tied together, my father and I
and you, echoing souls, gathering close
and closer by the day.  

Saturday, 2 July 2016


for Jo Cox

I would have let you see me
if only you had asked.
I would have looked into your soul
and listened; sama,
the Sufis call it, as they whirl
in whorls of dhikr, remembrance.
Remember me now that I am gone
far away into a muted land,
where my heart’s beats are unsteady
and my eyes are blind.
Something came for me
before I was ready. You came for me,
with knife and gun, the old
and the new; in case one failed,
the other would protect you.
You were scared of me, a girl
who packed toothpaste in summer
and mothered two babies
who know you now, who know
the face of hate
but long before they knew you
they knew the face of love,
of hope blossoming, of hearts
healing, and eyes seeing beyond
this breathless fabric you wrapped
around me.
At night you lie awake
and think of me; you cannot
forget my surprise – you thought
I would expect you
but you see, Friend, I thought
only the best of you.

- Shaista Tayabali, 2016

I was recently contacted by the editor of Visual Verse magazine. She hoped I would contribute to July's edition of poetry inspired by imagery. The photograph chosen was 'Unsplash' by Oscar Keys. I had been thinking about Jo Cox; many of us have, as waves of xenophobia echo around the globe. What a remarkable human being she was, unknown to most of us until known for this act of fear, of violence, of hatred committed upon her body. When Istanbul was bombed the other day, I turned to my father for comfort - and he reminded me that though these heinous acts occur, so also do acts of extraordinary kindness, compassion, generosity. 'We don't hear about those,' he said, 'but they occur many times, more times than any of these atrocities.' All we see are the worst of ourselves. Perhaps we are looking in the wrong places?  

Friday, 24 June 2016


Yesterday it poured all day, and long into the night. June's roses have taken quite a beating. Will they recover?

At the hospital my stats were not promising: temperature - 37.7 and pulse - 113. The immunology team decided against my receiving intravenous immunoglobulins. Two weeks of antibiotics were prescribed and I was sent home. Unfortunately, a nurse had already hooked up one of my Ig bottles, which would sadly have to be discarded. I regret the waste of such valuable, life saving medicine. But deeply appreciate the nursing staff's concern in making sure I was the priority. I feel so loved by my team of nurses at the hospital; I am seen. Really seen.

As a patient I have to trust many others with my life. I have to trust that when they say they know more than I do, they really do know more. I have to trust that I matter. As a citizen of a country, we have to trust our lives do matter in the hands of those elected.

The vote to leave Europe was not my choice, but democracy is. I value my right to vote and the right of others to vote as they see fit. But sadly, as google analysts are proving by the discovery that many in the UK don't know what the EU is, let alone what leaving it will constitute, what has come to be has come to be as much out of fear and ignorance as anything else.

When a girl like Malala Yousafzai speaks out about the importance of education for the millions of girls who are unfortunate enough to be kept out of school, she is also speaking up for education itself. So often we, the educated privileged, don't know about our own governments, let alone global policies. Worst of all, how many of us can recite the Universal Declaration of Human Rights?  It should be the most important piece of literature any student learns. Imprinted on our minds once we leave school and go beyond into the world of Others. That word that scares so many of us.

Shall we begin to recite together? Here we go... 'All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood.' And sisterhood.

It is still raining. But we are together, reading and remembering some of the most beautiful words of our human language.
Eleanor Roosevelt, chair of the commission that drew up the text of the Universal Declaration, was considered the driving force behind its adoption in Paris in December 1948.

Thursday, 26 May 2016


I like painting my lips.
Nothing wild like purple,
or unexpected like green;

just your standard, average,
ordinary orange,
herald of summer dreams -

or a plump, pale pink
promise of innocence,
candy floss at Strawberry Fair

when school was out
and love
was ever in the air.

© Shaista Tayabali, 2016

Poetry prompt from dverse Poets Pub...

Saturday, 7 May 2016


Shaista Tayabali
Cambridge, England 

8 March, 1964
Me, I just got out of the hospital where I had my middle entered by the surgeons. It was all a howling success from their point of view and one of them is going to write it up for a doctor magazine as you usually don't cut folks with lupus.
Flannery O'Connor, the Southern American novelist, was diagnosed with "disseminated lupus erythematosus" in 1950. She was twenty-five. Her life divided itself into two parts, according to William Sessions, Regent's Professor of English Emeritus at Georgia State University, and a friend of the O'Connors. Sessions describes lupus as "an incurable death dealing disease... that is, her body was killing itself. The self was, without her will, committing suicide. She could do nothing. Her freedom, as a living human being could do nothing, hurtling through space and time toward annihilation."
Having spent a few years writing and traveling between New York and Connecticut, O'Connor returned to Milledgeville at Christmas, 1949, to resolve the first of her health problems, an operation to correct a floating kidney, or in her words: "I have to go to the hospital Friday and have a kidney hung on a rib." Within a year of this operation, O'Connor was informed that she was dying of lupus. She was debilitated both by high fevers and the treatments employed by her doctor, Arthur J. Merrill, to save her life. Once discharged, and still believing she was suffering from an earlier misdiagnosis of rheumatoid arthritis, she began a strict salt free, milk free diet, and ACTH by inoculation, which she learnt to administer herself. Above all, she believed this was a temporary ordeal in spite of the doctors. She was on cortisone, which counters the powerful desire of a lupus patient to stay in bed. Throughout she continued to work on her novel Wise Blood.
The editor of O'Connor's letters collected in The Habit of Being, Sally Fitzgerald, describes lupus as "a dangerous disease of metabolic origin—incurable but controllable by steroid drugs—which exhausts the energies of its victims and necessitates an extremely careful and restricted life."
Incurable. That word, repeated twice, like a tolling bell. O'Connor was born on March 25, the Day of Annunciation; the proximity of a cathedral opposite the family home provided a tolling bell every fifteen minutes of her childhood.
Fitzgerald’s description perfectly defines the disease as I engage with it today, in 2016. O’Connor is not the most sympathetic of writers, her fictional work presents complicated barriers of race and religion for the modern reader; she herself knew that "most people think of (these) stories as hard, hopeless and brutal," but in her letters I find the echo of my own voice, my frustrations at the lassitude of a society, medical or otherwise, that stubbornly continues to disengage with the seriousness of lupus.

At the instance of my own diagnosis in 1997, I was a victim of that social ignorance. When the words, 'You have something called SLE, Systemic Lupus Erythematosus, but a very mild version, you won't even notice it, no need to panic" were uttered, neither my parents nor I second guessed the manner in which my diagnosis was delivered nor the advice that immediately followed the delivery. "Go on holiday," waved my cheery immunology consultant, the one who always referred to me as "this charming girl."
"Enjoy yourself," he said. "Start the hydroxychloroquine when you start university. I dont expect to see you back here."
We trusted the deliverer of this news. He had become a particular friend. We accepted the words as though they formed a parcel we had been expecting all along, and trooped out of the office with much shaking of hands and cheerful farewells.
Ironically, unlike my own state of ignorance at point of diagnosis, lupus was a known quantity to the young O’Connor. Her father, a post war survivor, one of those men who belonged in Gertrude Stein's opinion to the 'lost generation', had been diagnosed with lupus in 1937, had died of the disease in 1941. Ten years after her father’s death, O’Connor returned to her mother, and to Andalusia, the ancestral farm in Milledgeville, Georgia, where she outlived the doctors’ prophecy of her own death by eleven years. Perhaps knowing it was a killer, her father's death providing incontrovertible proof, she rarely had to face the bracing advice and encouragement of the healthy that a lupus patient, or any chronic illness patient, is usually obliged to endure. Or perhaps she did, as this letter dated April 4th, 1951 reveals: "Now I am at home again and not receiving any more awful cards that say to a dear sick friend, in verse what's worse. Now I shoot myself with ACTH once daily and look very well and do nothing that I can get out of doing."
In the months leading up to her death from lupus, O’Connor’s letters are both moving and snippy, a snark displayed by another favorite writer of mine, Eva Ibbotson, in an interview conducted towards the end of her life. Ibbotson was diagnosed with lupus in her seventies, and as with O’Connor, any interference in their writing lives, including or especially interviews, was regarded with a growl. Perhaps writers are naturally grouchy beings, living isolated, hermit lives as we do. To add a sprawling beast of an autoimmune illness into the literary equation is bound to tip us over the edge.
At twenty-three, O’Connor was perfectly capable of flooring a patronizing publisher with a courteous but steely letter when he proposed to "work with her" to "change the direction" of her first book. The publisher later complained in a note to her former teacher Paul Engle, that O'Connor suffered from "hardening of the arteries of cooperative sense"—an extraordinary term, but a quality I wish I possessed. Unfortunately I have found one has little choice but to loosen the arteries of cooperative sense when dealing with doctors.
8 June, 1964
I am still here—into the 3rd week. I had a transfusion Sareday & another Sunday. I don't get any information out of them that I particularly understand but then I'd have to study medicine if I wanted to keep up with myself. I don't know if I'm making progress or if there's any to be made. Let's hope they are learning something anyhow.

16 June, 1964
I asked [the doctor] today when I could go home. Well, he says, we can begin to think about it now. Well, you begin, says I, I been thinking about it all the time. So we are beginning to think about it.

The first mention of lupus vulgaris referred to a malignant ulceration destroying the nose or face. The disease resembled the attack of a wolf. Wolf bite. Today the term lupus vulgaris is obsolete; the "malignant ulceration" actually refers to cutaneous tuberculosis—a condition totally unrelated to lupus. In the 1840's the Viennese physician Ferdinand von Hebra described a distinctive rash "mainly on the face, on the cheeks and nose in a distribution not dissimilar to a butterfly." From wolf bite to butterfly wings: is it any wonder that the lupus patient is an abstraction of chaos?
In 1851, Pierre Cazenave combined lupus, the Latin word already in existence, with a Greek-rooted French word, erythemateux—"lupus characterized by redness." Later, erythemateux was Latinized to erythematosus. And finally, since the condition visibly affected various other parts of the body—"disseminated," then "systemic" prefixed "lupus erythematosus." A weighty term, but the reduction of systemic lupus erythematosus to lupus is not necessarily helpful in explaining how the disease feels, or how the lupus patient must cope with her life sentence.

How does it feel? Like there's an animal inside of me. Or I am animal.
I'll be sitting in the car with my sweet parents in the front, my mother mildly describing the quaintly dressed woman on the other side of the road for my father's amusement, or both of them discussing the recent antics of their grandchildren, and I, at the back, strapped in for safety, am growing claws, thirsting for blood, red eyed and frantic. A contained fury, I grit and grip my teeth and curl my claws into my palms and breathe into the hell.
They are no fools, these sweet parents of mine. They have lived with this wolf-child-woman for as long as I have, and they know exactly what to do.
They neither invite the wolf to speak nor deny him the right to spit and hiss. Him? Her? It is a genderless beast.
Carl Horner, Professor of American Literature at Florida University, is one of the few academics who has made a direct connection between the killing violence of SLE and the metaphorical significance of violent, self-contradictory characters like the murdering Misfit in "A Good Man Is Hard To Find."
O'Connor claimed all her stories were "about the action of grace on a character who is not very willing to support it." It seems to me, reading O'Connor's letters, that she herself lived, or attempted to live, in a state of grace.
Once she accepted her destiny, she embraced it, employing a phrase by the French philosopher and Jesuit priest, Pierre Teilhard de Chardin—"passive diminishment"—to serenely accept whatever afflictions or loss she was unable to change.
I, on the other hand, living as I do in a time of self-help, raw vegan food goddesses and Balinese yoga retreats, am less easily able to be content with the life of a sick writer. Not a day, not a year goes by, without feelings of failure, certain that I have taken the wrong path at every crossroads. I have also lived with or near my parents throughout the course of my disease—the added burden of glaucoma diagnosed within a year of my lupus diagnosis ensuring that I have a double vulnerability, a double need of my mother's strength, comfort and solid reassurance that I am loved no matter what. But I try, like O'Connor, to believe that as long as I have "enough energy to write with and as that is all I have any business doing anyhow, I can with one eye squinted take it all as a blessing."
The years have taught me to cling to one thing—the voice in my head that is translating the experience into language. The words themselves are not the solution, it is the knowledge that my future self's fingers can scribe with pen, will type into the whiteness, the blankness, the beautiful blackness of letters, a poem. A line. My own. Or perhaps belonging to some other animal-soul in terror.
We borrow language from each other. We remember stories, punchlines, moralities and also that there are no punchlines, moralities, endings. It goes on. This is how I go on. The words. Writing. The sharp tearing and through the slit, a memory of something pure, neither human nor animal, but natural. An instinct. Survival.
24 June, 1964
I've had four blood transfusions in the last month. The trouble is mostly kidneys—they don't refine poisons out of the proteins & therefore you don't make blood like you should or you lose it like you shouldn't or something. As far as I am concerned, as long as I can get at that typewriter, I have enough. They expect me to improve, or so they say. I expect anything that happens...

A month after that last entry, O’Connor was dead. She hated the disease because it interfered with her writing, but she wrote right up until her death on August 3, 1964. She was 39. I hope that I will live beyond that age but a life with lupus is as unpredictable now as it was then.

Photography by Jay Leviton, taken at O'Connor's family home of "Andalusia" in Milledgeville, Georgia, 1962

Dibner, R. M.D. (1994). Lupus Handbook for Women. New York: Fireside.
O’Connor, F. (1980). The Habit of Being: Letters of Flannery O’Connor. S. Fitzgerald (ed.). New York: Vintage-Random House.
O’Connor, F. (1971). ‘A Good Man is Hard to Find’. Flannery O’Connor: The Complete Stories. New York: Farrar. 11-29.
TICenter (2013) It Takes a Story to Make a Story: Flannery O’Connor’s Life and Imagination. Available at: [Accessed: 30 March, 2016].
YaleCourses (2008) 3. Flannery O’Connor, Wise Blood. Available at: [Accessed: 30 March, 2016].

Shaista Tayabali is a poet living and writing in Cambridge, England. She was diagnosed with Systemic Lupus Erythematosus in 1997, and has since combined a life of illness with a life of letters. She is a recent graduate of a Creative Writing MA programme, and is completing her memoir on living with lupus.