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Monday, October 29, 2018

BLOG OF THE WEEK ~ A CHAT WITH SHAISTA TAYABALI

We have a very special visit today, my friends, to one of Poets United's earliest members, Shaista Tayabali, who blogs at Lupus In Flight. As the name of her blog indicates, Shaista lives with lupus. But it is not her illness that defines her; it is her radiant spirit, which truly does fly above. Shaista lives with her beautiful artist parents in Cambridge, England. She is well-known to all who  cross her path at Addenbrooke's Hospital, whose halls she graces often; she has been interviewed by the BBC more than once. When Shaista's book of poems came out, I asked her if we might feature her, and announce its publication. Happily, she said yes. Prepare to be inspired.







Sherry: Shaista, it is so good to be chatting with you again. We last  spoke in 2017, and we understand since then you have completed not one, but two books, a memoir and, recently, a lovely book of poetry, “Something Beautiful Travels Far”. I have a copy, and it truly is something beautiful, your words traveling to me across the Pond.

Tell us about your poetry book first, won’t you?


Available here
Kindle Edition available here


Shaista : Sherry! Blue Eyes! Thank you for doing a second interview with me – it’s the closest we get to having a proper conversation.

The poetry book… I’ve been sharing my poems on my blog since 2009 – in fact, my poems were the reason for creating my blog in the first place, but then it became a home for all sorts of anecdotes about my hospital life and family life… my little village shenanigans across the pond from you… but two years ago I decided I wanted to put out a physical collection. 

I put together a host of poems, and then I asked a poet friend of mine what she thought. She advised me to wait, send my poems out individually some more, so I followed her advice… until this year when I decided I couldn’t wait anymore for a poetry press to find a collection of my work acceptable, so I have become my own poetry press for now! There is nothing new in writers and poets printing their own work as you know. Leonard Woolf did it for Virginia; Eliot, Twain, Atwood, Poe… all put out their own collections of words from time to time.

I have a kindle edition available for those who cannot buy the print edition, and lately I’ve been illustrating copies for those friends who bought the book but wanted it autographed. If I can manage to include illustrations in a future edition, I will. My parents are both artists, and the gene is hard to shake off! I find myself wanting to paint and draw more than ever. One of my literary heroes is Beatrix Potter, and I often think about how people described her incredible originality as ‘those little books’. Those little books continue to bring such joy! And joy is a good enough reason to keep at our art.




Sherry: I am so happy your book is out! An illustrated version sounds wonderful! 

What I love most about your poetry – and your blog posts – is that, while you live with a debilitating illness, you radiate such joy in life. Your compassionate heart shines forth in your posts, as you interact with people you meet, on the hospital ward and off. How do you manage to stay so positive, my friend?





Shaista: I have been on a chemotherapy type drug called Rituximab since 2009, the same year I began my blog; Ritux is also described as monoclonal antibody therapy, and it has been the most effective treatment for the version of systemic lupus I have. But as I just mentioned, it is cytotoxic, and highly immunosuppressive, so picking up infections is too easily done, and then too hard to treat because my body has become fairly resistant to the usual antibiotics. 

When I’m in hospital I am determined to humanise my own experience, so I don’t suffer more than necessary. It can be a very lonely place in spite of the hubbub of nurses and doctors, and it can rob you entirely of your sense of self. You are a number, a case, a diagnosis. You might arrive without your clothes, hairbrush, glasses. No books to read, no entertainment, and no one who knows the worth of your soul. I go in to hospital prepared to counter all of those things. And poetry is probably my most powerful arsenal. People often speak of me being a warrior, and use the language of battlegrounds and fighting. So then why not speak of poetry as my weapon, or the pen, at least, as the sword I wield.

Sherry: Your pen definitely wields considerable power! Do keep wielding it! I admire your determination to humanise your experience. 

I love all of your poems, and blog posts, needless to say. I am a big fan of the way you see the world. There are two poems from your book that I especially love. Your poem “Shaista” describes you so well. (Our newer members may not know that your name is pronounced “Shy-sta”, and that you are known by your family as “Shy-Star”, which suits you so well.) Let’s take a look:






"Shaista.
That is a proud name."

I am proud of my name.

It is the Rajput name
for warriors
It is the Persian name
for poets.

Am I not then Shaista
the Warrior-Poet?

I am standing on the battleground
listing a little
Sword and pen at the ready
Blood and words aplenty

But I long for sakura
snow pink petals of my cherry tree
Oh brief, beautiful one, wrap yourself around me
So I can be
Shaista, the free.


Sherry: You are indeed a warrior-poet! Oh, this is achingly lovely. I also really liked your “Night of the Blood Moon”. Let’s read:



I went to the place where the wild things are
last night, on the trail of the blood moon;
I followed stardust and scalpel stones
to the place beside the runes.

I held my palms, out,
for all the readers to see,
to make what they could of the threads that bind me
behind the smudging
     and the tearing
     and the rearranging
of my soul.

The blood moon passed over
I was bathed in blood
I paid in pain of a different sort
from a different source;

from the place where the wild things are
to the place where the unspeakables are
to the place where the silent are
remembering. 



Sherry: I love the places where the wild things are. Tell us a bit about this poem?

Shaista: Thank you – I always find it interesting which poems appeal to people. My dearest friend Mary, to whom my collection of poems is dedicated, loves Girl,Interrupted’ and my father of course loves the first poem in the book – ‘Crocuses’ – because it’s all about him!

Sherry: Those are both brilliant! If I could, I would include the entire book here! Smiles. 

Shaista: ‘Night of the Blood Moon’ was a result of some images posted on a poetry prompt website featuring the portrait photography of Phyllis Galembo, professor of fine art at Albany University in New York, celebrating the ritual of masquerade from Nigeria, Haiti, Zambia, Sierra Leone, Ghana, Burkina Faso and Benin. The carnival characters she photographs are rooted in African religion and spirituality, and among the materials plundered for their costumes are lizard excrement, sugar syrup, tar, coal dust, leaves, cowry shells, sisal. The images struck a memory chord of the drawings from Maurice Sendak’s ‘Where the Wild Things Are’. 

I had also been wanting to write about the blood moon phenomenon (have you ever seen the blood moon in Tofino?), which had coincided with Passover… it’s quite fun being a poet – you can thread (or plunder) all sorts of seemingly disparate ideas, concepts, objects into the union of a single narrative. I want to do what William Stafford did - write a poem every day - but I don’t. I tend to wait until I can connect ideas, moments, images. Ekphrasia, the Greeks called it!

Sherry: These inspirations came together wonderfully in your poem. I missed the blood moon but occasionally, when I have a Keeper to drive me to the beach at night, for I can't drive in the dark, I get to see a lovely moon rise above the sea.

I know you have been trying to decide where to submit your memoir. Would you tell us a bit about the story you tell in this book? (I have read it and it is as wonderful and inspiring as I expected it to be. I am certain the right publisher would leap at the chance to publish it.)

Shaista : Well, that’s a kind way of putting it! I know you are always so supportive of my work – and I have always been grateful for your unfailing belief in me. Do you remember sending me a carved stone into which you taped a tiny piece of paper, with the words ‘Shaista, Believe!’ on it? I love that stone! 




I am struggling to find an agent willing to take a chance on a tale of living with lupus and glaucoma. Some books take longer than others to find the right home and mine is among those - difficult to place, harder to sell. It is a book I have worked on for many years, honing it, turning it from a personal recounting towards a more universal direction - that of living what appears to be a failed or imperfect life – we are not supposed to be chronically ill, society has no idea what to do with us – and still finding joy, beauty, happiness, contentment. It is a kind of coming of age tale… not the cut off age of 18 or 21, but rather moving towards 40, and refusing to be made invisible, or rendered voiceless.

Also, there are a lot of absurdities in a life like mine. So hopefully the book is funny too. Maybe not a roaring comedy, but my consciousness about these oddities is an intrinsic part of why I do smile and laugh as much as I do!



Sherry: Not a failed life at all, but a transcendent one, no small achievement! All of who you are is so much more than your illness, my friend. But I know your challenges are very hard to deal with. So I think we must sneak Mary's favourite poem in, since it illustrates so well what we have been speaking of.

Patient #13915 etc etc

The gleaming pebble 
of my sparkly days
Rubs itself raw,
and ruinous
Here, on the Stroke Unit
I am just another Case
of Girl, Interrupted

I have lost my face
along the waterways
of little deaths
and unbearable truths.

I have lost my place
Lost the fluidity of my grace.

Sigh. A well-described reminder of the reality you live with, though you smile so bravely. 

I know that one great blessing in your life is your extraordinary parents, both artists, whom I admire so much. Let's take a peek at the poem “Happy”, which you penned for them.





What does happy look like to you?
They fill the shelves with How To Be Happy,
but it's a sale.
What if you could be happy
without the sale?

What does happy look like to me?
My parents at the bottom of the garden,
Dad investigating his old domain;
He used to be the one who
cleared the ivy, tidied the hedges,
raked the weeds and watered the green -

Time took his eyes away,
but not the pride.
Nothing half remembered about that.
Arm in arm, they take a turn
about each bed, each nook, each curve;
Mum describes the changing years

in patterns of leaves,
trading the memory of colour
with his cane; but her hands
still tell most of the stories -
he accepts this was always her way.

Golden fields beyond their figures;
my mother's laughter, the evening chorus.
Wood pigeons salute their love.






Sherry: I salute their love, too. How wonderful they are, and how beautiful your poem.

You took a couple of amazing trips this past year, as well. Would you tell us a bit about your trip to Italy (!!!) and your recent trip home to Bombay, for the first time in 21 years?

Shaista: I was hospitalised four times last year with various forms of sepsis, including an infection that ought to have stayed localised but instead entered my bloodstream. I ended up with PICC lines twice, which means a tube is inserted inside the body for daily self injections. Yup, not much fun. 

So in comparison, this year has been miraculous. First, a three day whirlwind trip in June with my younger sister-in-law Theresa – I surprised her with Napoli, Positano and Capri. A lot of walking, like we couldn’t walk normally type of excessive walking (Positano, your steps are unbelievable!) – and eating (pizza from Da Michele – the place made famous by Julia Roberts in Eat, Pray, Love when she unzips her jeans to make more space?) Best. Pizza. Ever. Cheese on double cheese on cheese…

I thought that would be it as I had been incredibly fortunate to travel at all. So when it came time to celebrate my 40th birthday I thought I’d keep it local, just go to the seaside on a watercolour retreat…. But this same sister decided that was not a good enough plan. So she consulted with all my siblings and then my older sister-in-law Angelina casually asked me if I’d come out to India. So casually, I decided why not?




Bombay was extraordinary after 21 years, like a dream. I was only there a few days, but I lived every second as deeply as I could. Friends I hadn’t seen in all those years, foods I hadn’t eaten, places I hadn’t visited since my diagnosis in August 1997. I fit Bombay in between Bangalore and Singapore, and we spent a few days in Indonesia too, so all in all, I may have used up all my birthday wishes of many years combined, and a few miracles too.




Sherry: I live vicariously if, indeed, I live at all, and I think your travels made me as happy as they made you. I so enjoy the photos on your blog, of all your adventures.

How are you doing now, Shaista? What plans and dreams do you have for the year ahead?

Shaista: I’ve talked about all sorts of hospital stuff, but not my eyes. I’ve had a bunch of operations on my eyes for glaucoma – a trabeculectomy bleb, a Molteno tube - but the one I had in September 2013 really destroyed my peace of mind. It’s called a Baerveldt shunt and it sits attached to my iris. So every time my pupils move, I experience various stages of discomfort. 

All my dreams and hopes and plans rest on the fulcrum of what my eyes and body are capable of. Sometimes they allow me the freedom to do as I please, and much of the time they don’t. 

Sherry: That is very grave news, my friend, as we poets and artists need our eyes. I imagine the shunt must be very uncomfortable. I pray your eyes continue to serve you.

Shaista: I want to work on my quarter finished novel. I want to start teaching again. I want to put together another collection of poetry. I want to travel. I want to be present for the lives of those I love. I want to be a good, better friend. I ought to learn to cook, to drive. I must exercise more. I want to keep illustrating, to work on bigger canvases, create a mural. I want to come visit you in Tofino!

But I’ll take what I’ve been given so far, and store it away in the treasure box of things to be grateful for.





Sherry: Gratitude is your signature quality, my friend. I want you to come to Tofino, too. You nearly did, once! So close. Next time. 

Thank you for this  lovely visit, and for sharing your radiant spirit with us. I believe there is a publisher out there who as yet doesn't realize there is a best selling memoir sitting on a desk in Cambridge with his or her name on it. Shaista, Believe!


I am sure you loved this visit as much as I did, my friends. Does this girl not shine? Do come back and see who we talk to next. Who knows? It might be you!


27 comments:

  1. Wow! What a most incredible life story here. I'm totally inspired. Not only has this been such a fantastic introduction to someone new to me, since I'm new here at Poet's - but it's gratifying to see that there are others, too, unfortunately, who fight every day to rightfully claim a space and voice, as being more than just an illness, a number, a diagnosis. The most rewarding part, in sharing in this wonderful interview, has been the joy that translates through these words, the sense of determination to accomplish and to somehow, be grateful for the blessings, nonetheless - which is no easy feat when it can be so difficult. And the poetry? Wow - stunning, moving, provocative.

    I'm grateful Sherry, for another super intro - so thank you - and thank you to Shaista too -

    It is the Rajput name
    for warriors
    It is the Persian name
    for poets.

    - truly fitting for such a gifted and talented person :D

    now, I must be off to continue to explore and delve further!

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    1. Oh what a generous and loving comment Pat, thank you so very much!!! It sounds as though you also live with a chronic illness that threatens to make you invisible and voiceless? We are so fortunate to be artists and writers - something insistent in us knows our own worth, but it’s easy enough to believe otherwise. I credit my parents and now my four kids (one nephew, three nieces) with much of my joy!!

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    2. P.s thanks for quoting my poem 😄
      I just watched a play about W.H. Auden where he said he hated having his lines quoted back at him - I’m clearly not in Auden territory!!!

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  2. Ah, this is such a heartwarming conversation. It is good to get to know about you, your life and your creative expression, Shaista. There is something so positive and gratifying in your words, both in how you share your story as well as your poetry — the many facets of your life and your journey are inspiring. I loved your poems — they have a beautifully individualistic voice and their rendition through such imagery is both tender and strong. I look forward to reading more of your written word. And I wish the best for you, for your book as well as your health.
    Thanks, Sherry and Shaista, for this lovely interview. :-) <3

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    1. Thank you so much for reading our interview Anmol - Sherry is so loving to me, and has been an incredible source of strength and wisdom not to mention encouragement over the long years we have known each other - even though we have never met! But that is the way of it for us long term bloggers...

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  3. O, Shaista! Your poems hold your soul up for others to see! How beautifully you live to the max of possibility. I love the poem about your parents for that reason, too--you observe your parents in different degrees and ways of seeing, arm and arm as well as cane in hand. The lines of poetry and of drawings seem similar to me, cut to the essential core of love and more powerful for that. You do catch the Light, and share it too. Thank you. Thank you, too, Sherry, for this inspiring interview.

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    1. Apparently, Kindle addresses are different in different parts of the world. I found a book I could purchase here: https://www.amazon.com/s?rh=n%3A133140011%2Ck%3ASomething+Beautiful+Travels+Far%3A+%28Poems%29&keywords=Something+Beautiful+Travels+Far%3A+%28Poems%29&ie=UTF8

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    2. Ooh can’t wait to share this comment with both of them 😄 They have always loved reading (nice) things people say about their daughter!! And I’m always dragging the two of them into my literary world - because much of being an artist - a joyful artist (not that joy is always possible) - is due to them.
      Thank you for what you said about my drawings especially - yay!
      (And maybe Sherry can change the link for the kindle page)..

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    3. It came up fine when i clicked it, Shaista. And am away from home with my tablet, so a bit limited. Susan, if you feel it needs changing, might you hop in for me? When i click, it goes right to kindle at amazon.

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  4. Hi Sherry & Shaista

    I enjoyed this wonderful Chat. It is difficult to go through life with a chronic illness. Shaista, you have a wonderful attitude which gives you strength. Your poetry is reflective of your soul - beautiful.

    I will have to add you to my visit, thanks for sharing.

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    1. Thank you so much for reading me/ reading us. It is difficult. It never ceases to be. And I do struggle wondering just how much harder it is going to get! But, one day, one lifetime at a time...

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  5. What a wonderful, wonderful interview. Shaista's positivity must be infectious - as I have come to the end of her inspiring story with my spirits renewed. What a beautiful human being - joie de vivre wafts through all of your art, Shaista. Your poetry is stunning. In particular, 'Happy' resonated deeply with me.

    Thank you so much for making this happen, Sherry. I am uplifted. Great job on this, Poets … sending out Good Wishes to both of you lovely ladies. Thank you for this!

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    1. Good wishes to you too! I’m glad the joie de vivre was infectious and you felt renewed Wendy - that’s mostly thanks to Sherry - we did an interview some years ago and I was just as happy and larky talking to Sherry then - you know, we were supposed to meet last year but we couldn’t ... I was supposed to take Sherry lots of English tea!
      This is the closest we get 😊

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  6. I knew you'd love our shy star, for everyone who meets her catches a little of her shine. Thanks, Shaista, for lifting our spirits with your bright smile.

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    1. Love you too ♥️💕💜🍁🍁

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  7. What an inspirational post today! Shaista, I admire you for your creativity and energy despite your illness! I can see you make the most of life every day and continue to dream of what more you can do. I do hope that you finish your novel too. That would be a real accomplishment. Thank you, Sherry and Shaista, for this wonderful visit!

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    1. Thank you Mary... I was just talking to Mum tonight about the strange struggle of trying to build on dreams and yet not fear what is to come... I hope I can have energy enough for my novel - books are exhausting creatures to complete!!!

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  8. Wow! You really know how to live your life Shaista. I am so impressed with your determination, your poetry, your adventurousness and how beautiful you are. Thank you Sherry too for featuring Shaista again as this article has made me feel so good.

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    1. I’m so happy the interview made you feel good! It’s always lovely to connect ‘across the pond’ as Sherry puts it.. especially on this rainy blustery Halloween 🎃

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  9. Kids, i will have no access to online from 6 a.m. tomorrow till late afternoon, but will be sure to come in and follow the conversation the minute i am back. Have a wonderful Tuesday!

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  10. This is absolutely inspirational, dear Shaista and Sherry! Your words lifted my spirit Shaista and you are so beautiful. "It is the Rajput name / for warriors / It is the Persian name / for poets." You are That, the " radiant spirit, which truly does fly above." as Sherry so perfectly says. Congrats for your book. May all your dreams come true. My best wishes.

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    1. Thank you Sumana for all the good wishes ... strange to think it’s already past noon here for me, and the pumpkins are getting ready for their big night ... meanwhile all of you are fast asleep 🤗

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  11. Inspiring indeed! Thank you Shaista.. God bless you!
    Thank you Sherry for this interesting read.

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  12. Thank you Sherry and Shaista for this inspiring, heartfelt interview....it has made my day!!

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  13. A shining star indeed! Thank you, Sherry for making her better known to us – and to you, Shaista, for sharing your story so freely and beautifully. My cousin had lupus (exacerbated by a serious car accident) so I know a little of what it is like, though I am very thankful I only know at second-hand. Nevertheless she lived a long life with much fulfilment, as you are clearly in the process of doing too. Your beautiful poetry is a great gift to your readers.

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  14. May you live your dreams Shaista. Your parents are lovely.

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  15. I like Shaista's style. There's a sweet delicate quality to all the pieces. Thank you for letting us get to know her better. Rock on Shy Star!

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