ARTIST TO ARTIST: KRITI BAJAJ, INDEPENDENT EDITOR AND WRITER

photo credit: Sahil Bajaj

 

I'm a mountain person. I was three years old when I first visited my grandparents' secluded home in the Himalayas. Though I was too young to realise it at the time, the sense of possibility that this new world opened up would stay with me.

 

Himachal Pradesh, 2016, photo credit: Sahil Bajaj

Kriti, this is how you begin to describe yourself on your website: I've lived in cities my entire life – Bombay, Delhi, London – but every so often, I have a longing for grass studded with clover, starry skies and a majestic view that changes with each cloud and shadow, but is always constant. I mean, is it any wonder we ‘found’ each other? Poets just do! 'Poet’ may not be a term you would use to describe yourself, but I mean it in the way a writer uses her language. So, there you are, three years old in the Himalayas… were there books there? Did you start writing as a child?

 

There's a whole wall of books, though I can't remember whether this excited me at that age – I was a bit of a late bloomer when it came to reading. It's one of my favourite nooks in my grandparents' home. There was no internet here until a few years ago, and even phones arrived relatively recently. As a child, I used to communicate with my grandparents through letters. Many of the books are encyclopedias and reference texts on everything imaginable; my grandfather had many interests, from carpentry to photography. He once bought the contents of an entire bookshop! 

 

photo credit: Kriti Bajaj

I used to write poetry before I ever wrote anything else. I remember the first 'serious' poem I wrote was in fifth grade, and it was probably very derivative – I mean, I was only ten – but it felt like I'd found my calling. I'd come across little snippets of poetry at my grandparents' home, newspaper cuttings of poems by Patience Strong that my great-grandmother used to send to my grandmother, which I found wonderfully simple and musical. My nana also loved poetry and would recite some of his favourites often – Omar Khayyam, Swinburne, Henley – and inevitably start crying a few lines in. I wrote poetry all through my school and college years, with rhymes gradually giving way to free verse, and imaginative themes being replaced by real experiences.

 

There were a few years between the first time I met Clive James and the second. It was during our second encounter that he told me about a young friend he had made on the oncology ward (he and I met on a less specific infusion ward), only to lose her to a rare bone cancer. This friend happened also to be your dear friend, Shikha. Tell us a little about 'Oblomov'?

 

I met Shikha (known to the world as Oblomov) in my final year of college, when we were editors at a Model United Nations conference, leading a team together, completing each other's sentences and finding that it was very peaceful to curl up in our cabin rather than attend the sessions. We did our Masters in London at the same time too. The best introduction to Shikha is through her own words, so I will direct readers to her beautiful blog. So many amazing people found Shikha through this, and she connected kindred spirits, like you and I. 

 

Kensington Gardens, Oct 2011, credit: Kriti Bajaj

Clive James, of course, made her very happy through his enthusiastic support of her writing, and his wonderful sense of humour, some of which she shared with me. I reached out to him once in April 2015 with sad news, and we exchanged a few notes. He was very gracious; his words brought comfort. 

 

Since 2016, you have been on an ancestral quest to discover more about your family tree. Tell us a little about that? I often find myself googling my grandfather who was the first Muslim Chief Justice of Udaipur and aide-de-camp to the Sultan of Zanzibar. I want him to just pop up! I do the same for my great-grandfather, who was another High Court Judge, from my maternal Parsi side. Both were Khan Bahadurs. My maternal grandfather was in the railways like your great grandfathers. Trying to trace the female line is much harder, unless you have someone doing the oral remembering, like my mother. I am so envious of your ability to access from direct sources and digitise your findings - future generations will no doubt be thankful to you!

 

That's literally how I took a step forward with my research – I Googled my great-grandfather and he popped up! I'd done this for years, but there was nothing. I'd heard stories, seen photos, made family trees, but I was desperate for more. Then I went on a trip with my grandmother to her parents' last home, my first time there, and I felt really close to them even though I'd never known them. When I returned, information was awaiting me. I think the universe was sort of collaborating with me by giving me what I sought right after this trip.

photo credit: Kriti Bajaj

An entire family tree appeared, going back generations. It made me realise that there were ways I could do this research myself. I didn't actually end up using much of the information since I wanted to verify everything on my own, but it was a start. Since then, I've been learning about genealogy through online courses, resources, Facebook groups, and I recently attended my first genealogy conference too. Of course, as you say, the availability of records has made it much easier to trace the lines and connect with more people, places, and contexts. I'm about to embark on research of another branch of my family, for which there will be far less information (and perhaps a lot lost during Partition), but interestingly, we do have access to a handwritten family tree in Urdu that might give us something to work with! 

 

You went to Lady Shri Ram College. Tell us more about this experience - what is the college’s history? Why were/are you drawn to German particularly? Was it for German film appreciation? 

 

LSR is a women’s college affiliated with the University of Delhi, though the campus is separate from the other colleges of the university and feels a bit like its own little world. It was founded in 1956 to encourage and enable the higher education of women. My years here were definitely a turning point, because up until then, I'd been more interested in studying the sciences than the arts. But literature was the perfect subject and opened my mind in many ways. I think both the colleges I've attended – LSR and SOAS in London – have shaped and added nuance to the way I view the world and what's happening in it. 

 

Lady Shri Ram College, Delhi, credit: Kriti Bajaj

I started learning German as a third language in school when I was ten. We had three options: German, French and Sanskrit. I felt drawn to German mostly because it was the underdog and we were tempted with promises of exchange programmes to Germany (which never materialised). I also attended weekend German classes at the Goethe Institut for about three years when I was in college. I enjoy the worlds and cultures that a new language allows access to, and I've tried learning several over the years, but so far, German is the one that stuck. 

 

How did your interest in Zoroastrian heritage develop? I love that you were able to source a seven month internship at Parzor. (I’ve written for Hamazor.) Give us a sense of that time?

 

I wasn't very familiar with Zoroastrianism until I did the internship. Dr. Shernaz Cama was my professor at LSR and is also the Director of Parzor, and I'd expressed an interest in working there. I was taking a gap year after completing my Bachelor's degree as I figured out what to do with my life next, and I wanted to try all kinds of work. I also wanted to save money to buy my first camera, so a paid internship helped me meet both goals! I did all kinds of work during this time, from helping redesign brochures and the website, to assisting with sales, exhibitions and photography, as well as compiling Parzor's tenth anniversary souvenir book and covering the occasion for leading Parsi magazines like Hamazor, Parsiana and Fezana. This was the beginning of my freelance writing journey. 

 

How extraordinary that you wrote a dissertation on mental health in film years before Deepika Padukone became the first Bollywood actress to openly speak about her mental health. What drew you to this topic?

 

I was studying anthropology at SOAS, and my interest was specifically in visual and media anthropology. But I had a hard time selecting a dissertation topic. In initial sessions with my supervisor, I presented my plan of writing about the role of photography in war, but somehow it didn't feel like the right fit then. (I do love photography and I'm researching its history independently now.) I thought about other topics that made me really eager to know more, because a dissertation is a fairly long road. I'd written one of my term papers on the complex relationship between anthropology and psychology – it was one of the topics we studied – and I'd been fascinated by it. So I decided to combine that with visual culture. I did find a fair amount of research on the portrayal of mental health in Hollywood films, but only one book about Bollywood. I thought this would be a good gap to fill. 

'East of the Sun and West of the Moon', Nielsen, 1914

Back to Bollywood, or rather not, how did your passion for line dancing come about? Why line dancing rather than … well, anything else? You’d fit right into any English or American dance class with that up your sleeve, but what’s the appeal? (I’m an ex Bharatnatyam and tap dancer, but ballet was definitely my true love. Now I just free style in the house, after hours, when no one’s looking…)

 

I didn't know what line dancing was until I showed up one day for a trial class by Merry Feet, which is one of the only line dance clubs in India. I'd been looking for a way to be physically active and I'm not really fond of going to the gym, so I thought dancing might be a fun way to care for both my physical and mental health. From the beginning, I loved the music, the way that line dancing brought together so many different dance traditions from around the world, the stories behind them, the philosophy of not chasing perfection but learning and repeating patterns, the inclusiveness. I also liked how it was a community or social dance form, but individualistic at the same time – both in that you don't need a partner (I've also learnt salsa and bachata for a while, and felt quite limited by that, though they are beautiful in their own way), and you have the freedom to express yourself within the structure of the choreography. Because of this, we were also able to learn and practice line dancing online throughout the lockdowns in the last two years. 

'In Powder and Crinoline', Nielsen, 1913

 

I also taught line dancing for a while before moving to Bombay. One of my happiest accomplishments – and this is what I love about teaching, mentoring and also learning – was watching the steady rise of confidence as people went from being very hesitant in the beginning to guiding new learners a few months in without a second thought!

'Untitled', K K Hebbar, 1911-1996

About your many years as editorial manager for an art auction house, you say this: the real perk is getting to lay eyes on masterpieces that otherwise remain hidden away in private collections, as well as stunning gemstones, and centuries-old books and photographs. Tell us about one masterpiece in particular (or a few that spoke to you).

 

One of the first auctions I witnessed after joining Saffronart featured a beautiful painting by Nicholas Roerich. I'd been to his former home in Naggar a few years prior, and there are paintings there, but this one was quite different, almost haunting. Another artist whose work I really like is Jehangir Sabavala. Apart from art, I was fascinated by 19th century photographic processes like ambrotypes and stereoscopes, as well as rare and limited edition books such as those with illustrations by Kay Nielsen and Arthur Rackham. 

 

'The Dance in Cupid's Alley', Rackham, 1904

The colleague who sat nearest to me was in the jewellery department and would routinely receive boxes of glittering creations that were hard to look away from. I've never really been into jewellery but I do like beautiful things, and I've learned everything I now know about gemstones and techniques (which is probably just scratching the surface) from her. She even guided me when I was picking out my engagement/wedding ring!

 

'The Bangle Sellers', Sabavala, 1954

Your 2021 calendar or cookbook of food inspired directly from books is so worth reading. Of all your many worthy accomplishments, I would recommend this as the most delightful and delicious. Which brings me to my final question - as a fellow blogger and non-fiction writer who secretly longs only to write fiction (but seems never to do so), do you fantasise about writing a novel? I ask this because I can easily imagine your novel - it will weave in the art world, and the food world, it will possess the photographer’s eye for detail and the researcher’s eye for historical/ genealogical accuracy. Am I way off course here? And if so, what dreams do you dream of next?

 

I think everyone who enjoys writing hopes to write a novel some day! When I was young and innocent, I attempted starting a couple – a fun exercise while it lasted, planning the stories, chapters, characters and so on. But I haven't attempted anything of the sort in a long time. The closest I've come is writing several dozen pages about my family history, a compilation of my research. I've always thought I'd write a book someday, when the right story comes along, so for now, I'm just waiting patiently. I used to think it would be fiction, because that's what I chiefly read, but I'm not so sure anymore. I've read some delightful non-fiction, and I wouldn't be averse to it if the story intrigued me. I have some latent ideas, though none are quite developed yet. 

 

This year, I want to build my business further, continue my research, put time and resources into honing existing skills, and hopefully learn a few new ones. I also hope I'll get a chance to travel a bit and have a few little adventures here and there. 

from Kriti's blog 'Onwards'

Kriti, Clive’s sign off on all his emails to me was ‘Onwards’, the title of your blog, which was born months before you ever interacted with him. As you say, there are connections in everything. You chose 'Onward' as the title for your blog as a reminder to keep moving, keep learning, keep trying. Even when you don't really know where you are going, you remember that journeys are important. I wish you all the success and adventures your writing fingers and creative heart desire. Thank you for opening a little window into your life for my readers! 

Kriti can be found at her website www.kritibajaj.com

photo credit: Kriti Bajaj

A GLIMPSE OF ETERNAL SNOWS

On a cold November evening, eleven years ago, Mum and I entered what used to be the Olde Post Office down the road (now our friend Sue's cosy, charming cottage), to attend a reading by Dr Jane Wilson-Howarth. The Book Club had invited Jane, GP and travel writer, to share her memoir, A Glimpse of Eternal Snows: A Journey of Love and Loss in the Himalayas, and when the reading and Q&A were over and we were chin wagging over snacks, I asked Jane if there was an audiobook version Dad could read. 

A decade later, Jane writes in her blog: 

It was an idea I’d been incubating for yonks, ever since Shaista Tayabali (@lupusinflight) suggested it when I spoke to her reading group. Initially I was too busy and distracted to get down to it, but eventually I began, having no idea how long it would take. My experience of reading out loud in writing groups meant I knew that I could narrate 1000 words easily in ten minutes, so although my memoir is quite a tome at 374 pages and a little under 130,000 words, it was doable. It couldn’t take much more than 22 hours, so recording it wouldn’t take much longer than a week or so.

Spoiler. It takes longer!!

Recording consumed all of March, April (when we evacuated to the UK), May and some of June and July. I had already decided to add various bird calls to begin and end each chapter. Some are Nepali birds, some are English, depending upon where the action takes place.

The whole project took longer than I expected but it has been a labour of love. A Glimpse of Eternal Snows is a book that is written from my heart so I’m sure listeners will enjoy it, as long as no-one is too appalled by my attempts at Celtic accents. Here's the link to Audible audiobook. 

I wrote about Jane on my own blog as soon as I got home, in a post titled The Good Doctor, wishing she were my doctor but glad, soon enough, that she became my friend, and recommended me to the BBC Radio Cambridgeshire presenters as an interesting guest! I helped edit Jane's memoir for the American edition, which gave me a chance to fully immerse myself in Jane's life in Nepal, where she and her husband decided to take their two sons, including baby David, whose medical frailty had been dealt with in the least compassionate manner by doctors from my own Cambridge hospital. Nepali life gave David three years of burbling happiness...

The one sympathetic hospital doctor in Cambridge had advised us to treat David normally and we took this as a licence to take him on his first trek; at the age of four months, we packed up David’s heart medicines and tubes and headed up over precipitous drops and wobbly rope bridges to explore drippy forests and medieval hill-forts. The mountains were spectacular and healing. Strangely David’s heart disease protected him from the effects of high altitude. Our arrival in each mountain village was heralded by choruses of, ‘Children have come!’ We’d be surrounded and David taken from his carrying basket to be handed around for all to cuddle. He glowed in all this attention. He smiled and burbled appreciatively at all his admirers. Nepalis helped us see David’s qualities and talent for laughter...

June will be here tomorrow and Dad will sit out in the sun, eating mangoes and listening to Nepali birdsong and enjoying a glimpse of those eternal snows I read about eleven years ago... thank you, Jane!

CLIVE JAMES: NOTES FROM THE MARGINS OF A BLUE WARD

It would have been Clive James’s eighty-first birthday today. 

Lots of people have October birthdays; friends of mine, a goddaughter of mine. But the birthday of a friend you can never meet again, a friend who also, now, has a death day, imbues the month with even more autumnal poignancy than usual. 

 

He was, after all, the one who went viral with his Japanese maple leaf farewell. The death of the tree preceding his own was just the sort of joke the kid from Kogarah lived for. In his absence, it is harder to find the jokes, here, on the ward we shared. 

Clive’s yawns were leonine. He turned the infusion bay into his drawing room by holding no measure of that sound in discretion. He always fell asleep at a certain point during the drip of immunoglobulins into his vein, something I have never been able to do in my ten years of intravenous therapies. Aside from his genuine sleeps, the famous critic was also able to drop into utterly phoney narcoleptic faints when approached by an undesirable fan. One eager gentleman in particular acted extraordinarily upon Clive’s ability to stay conscious in the face of a bore. Poor dude, I tried to think, the milk of my human kindness attempting to overcome the bald truth: the gentleman in question really is an unstoppable torrent of opinion. 

There are many lonely people shepherded by ill fate into this place. Clive was not a philanthropist.

 

Sometimes, in his eagerness to skedaddle home, Clive would forget some portion of his garments. His cardigan. A scarf. But also, his slippers. Shuffling off in his socks, I ahoyed him back. (His drawing room, remember.) I was as unimpressed by his fashion as he was entertained by mine. His was sixties French philosopher, black, with crumbs. Mine was, is, anything to brighten the spirit. My soft, olive green beret had been eyed covetously so many times, that when the latest carcinoma had been shelled out of his skull, I offered it up. He swiped it without a hesitant beat. Goodbye, beret. I miss you, still.

It is only the start of autumn, mizzling days. The fire of joy is yet to come. We are seven months into a pandemic some of us are better suited to. (To or for? Clive would know.) My rabbit warren between home and Addenbrooke’s is traversed less because those three weekly infusions Clive and I shared are now weekly subcutaneous injections I attend to in my own home. Occasionally, I sit out in the garden, but the bees investigate the sticky serum too closely and drive me back indoors. No sub cut for Clive. No surgical masks or social distancing from his beloved granddaughter. No, just the freedom of a poet unbound. 

 

We were always joking about the spectre. And then one of us would look seriously at the other. Don’t die, said the look. The trouble is, I believed him when his look promised he wouldn’t. Or when he wrote, ‘my infusions have been stopped temporarily, hence my absence from class’ or, ‘I’ve had an op and it went quite well, so I’m coming alert again.’ 

Think about death all you like. It doesn’t help you prepare. Not really. Every poem is a brushstroke, feathering death away. Does it come mightily or lightly? Neither, I think, for Clive. Eighty he may have been in grown up years, but when it came, surely it cradled him softly, like the hug of a tree. No more thorns. The bark didn’t bite. He left the fire for us, and a deep impression in the blue vinyl armchairs, of joy.

All images via The Guardian website article 'Clive James: A Life in Pictures'

MOONLIGHT (a review)

In Moonlight, Black Boys Look Blue. This was the original title for Barry Jenkins' Oscar winning film 'Moonlight'. The film was based on an unpublished, semi-autobiographical play written by Tarell Alvin McCraney. I missed it during the pre-Oscars season buzz, so when I saw it playing for one day only on a random June afternoon, I jumped out of my lethargic skin and dove into the empty cinema. After the film had started I was joined by a group of three strangers, but I pretended it was just me and Chiron. And some popcorn. (It wasn't a popcorn eating type of film, but hey, where else am I gonna eat popcorn?).

Moonlight is a triptych. A piece of art. The sound of the sea begins the film, and a seaside palette of Provence blue and daffodil yellow bathes our eyes at unexpected moments, so you begin to float, suspending fear, anxiety, prejudice. You are 'Little' Chiron, held loosely but safely in the hands of Juan. Mehershala Ali won that Oscar because even though his character mysteriously disappears a third into the film, you feel his ghostly presence throughout. Weaving in and out on classical strings, Cuban and hip hop beats. 

But at the same time that sudden absence also made me tighten up, and I couldn't relax into the lyrical beauty. I wouldn't let myself cry until the film had ended, the credits were rolling and I realised Barry Jenkins had kept us safe throughout. I don't think I've ever talked to a film director in my head before, but I was willing Jenkins not to let me, us, fall through all the cracks we already know exist for Chiron and his kind of invisible blue blackness.

'Moonlight' is as serious as it gets and as loving. The two faces of woman in the film aren't polarised through moral judgement. They are just being themselves - human, fallible, trying. Failing, losing, surviving. Loving. Speaking of love, I think I'll watch anything with Janelle Monae - she has such a fierce, feisty, authentic presence here as in 'Hidden Figures'. And Naomie Harris - from Bond woman to crack addict - a powerhouse performance.

There is a moment at the beginning of the film when little Chiron looks up at Juan - a side along gaze that asks with big eyes, 'Who are you?' Why should I trust you, say those eyes. When Chiron's mother meets Juan for the first time, she looks at him, eyes heavy with suspicion. 'And who is you?' Juan replies: 'I'm nobody'. And finally, towards the end, the second love of Chiron's life, Kevin, asks the same question: 'Who is you?' And with that question, there is a chance for Chiron to not answer: 'I'm nobody'. He is being offered a chance to be somebody. To someone. 

'Who is you?' is the heartbeat of the film, echoed, mirrored. We grow up and into ourselves, and some of us get to be loved by people who ask that question of us, who listen for the answer. Who wait for the answer. Even when it changes. 

WOLVES AND PEACOCKS: WALKING WITH FLANNERY O'CONNOR

Last month I submitted an essay to Hektoen International, a journal of medical humanities, which strongly believes in the art of narrative medicine as a means of bridging the divide between doctor and patient. The 10th of May is World Lupus Day so it feels appropriate to share a piece about the nature of the beast I spend my life with. 

Dances with wolves

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 don’t 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.

Nothing.

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

References

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:https://www.youtube.com/watch?v=pLe4ZLnhdVs [Accessed: 30 March, 2016].

YaleCourses (2008) 3. Flannery O’Connor, Wise Blood. Available at: https://www.youtube.com/watch?v=PjplQUPhES4 [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. 

GATE OF LILACS

At night, I asked my father, 'If you could paint your nails any colour right now, what colour would you paint them?' He responded (with surprising alacrity), 'Lilac.' (Why? Because it's spring. Lilac season.) But I thought it perfect for another reason - I had been trying to decide on the perfect colour for an event the following day - Clive James' book launch for his verse-commentary on Proust, called, seemingly in accordance with the time of year: Gate of Lilacs.

It felt serendipitous.

I arrived at Pembroke in a bright red coat, white dress, feeling rather pale lilac about the gills, and plunged into another writerly adventure. At the entrance to Pembroke's Old Library, the new books were on display - Collected Poems, Gate of Lilacs and Sentenced to Life - I overheard a man order several copies. I looked up. Tom Stoppard. 'Halloooo!' (I did not yodel, but it was thrilling all the same.) He looked nice, almost approachable. And then he disappeared into the clutch of Englishmen and women milling around a seated figure.
 

Cambridge, according to one of Clive's oldest fans (102 year old Ann Baer of family Sidgwick) can become quite blasé - being able to boast a roll call of poets, rebels and Nobel prize winners; now the city breathed into the poignant spaces between the lines of the Poet Kid from Kogarah. 'Not a dry eye in the house!' Thus Clive, the Laughing Boy, merry after reading his epitaph. 

[He wrote a song lyric once that went like this:

'I've got the only cure for life, and the cure for life is joy

I'm a crying man that everyone calls Laughing Boy'…]
 

I thought of slinking away after the speeches and wonderful recitation. A small banquet of food was being laid out at one end of the library. I knew I couldn't really face chewing and swallowing in hallowed literary company (Carol Ann Duffy! Mary Beard! Andrew Marr!) but I drifted towards it anyway, just to have a point of focus. And found myself beside Oxford author and media commentator Douglas Murray. 'What is the correct etiquette,' I enquired, 'if you know the name of a famous person, but don't know them at all? For example, is it polite to say 'Hello, Douglas' or is it presumptuous?' Answer: famous people quite like being known, and more, being liked. So now I know. Over munchies, we discussed poetry, memoir and life, but not politics. He was charming, and had beautiful manners because at no point did he indicate by even a flick of the eye that he would rather be hobnobbing with the HobNobs. It was I, in fact, who was still eyeing up Tom Stoppard… 'What do you think?' I asked Douglas, whom I now regarded as the arbiter of good taste, 'is it ghastly for a famous person to have a stranger come up and regale them with personal information?' 'Depends,' said the arbiter. I shared my nugget. 'Definitely go speak to Stoppard. He'll enjoy that story.' But, I still couldn't. Instead, I talked to Prudence Shaw, Clive's brilliant wife, a Dante scholar, and confided in her that sometimes I can't summon the energy to 'achieve' - all I want is to play with my nieces. Play the days away.
 

Finally, a spot had cleared by Clive, and I retired to sit in his shade. I ought to say 'in his light', him being the star, but a friend always offers shade. The first thing Clive said when I sat down was, 'Have you met Tom Stoppard? Go and tell him I sent you.' I jumped up, carte blanche in hand, and accosted the poor man over his edibles. 'Clive sent me!' I chirruped. Oh, he was so lovely to me, so kind and interested - and asked me such pertinent questions about my illness that when we finally came to speak of Other Things, I couldn't remember anything I'd done since (and this is the nugget) I played Thomasina in Arcadia at sixth form. And was kissed for the first time, on a stage, by a boy whose girlfriend was in the audience. A girlfriend whose mother had directed the play. Septimus never kissed Thomasina in quite such a dry, papery way as on that stage.
 

The seats beside the star had finally cleared once more and, laden with coffees, Tom and I (Tom, Clive, Douglas… you see how democratic I am?) sank into chairs. We were just getting snug in a conversation about nostalgia for Bombay, and his time in Darjeeling when A Person cut across me to talk to TS. At first, I smiled politely (I understand, my smile said, I've been trying to do this very thing all afternoon) but finally, I stood up and offered my chair. Take it, I thought. Perhaps this means a great deal to you. (But the rudeness, mes amies!)
 

Never mind, never mind. One cannot collect all the beautiful shells on the beach, as the saying goes… I retired to phone for a taxi with good grace. Every time someone asked me how I knew Clive James, I explained that we meet across the drips. 'My mind is coming into focus again, thanks to Clive,' I told the playwright. It has been foggy for months, if you recall. I even had an MRI on my brain! All fine, all fine. Brain in working order. I feel as though I am at university again, only my lecturer awaits me on a faux leather chair while nurses attend to his (and my) blood pressure, heart rate and other vital signs. We are alive, and this being alive is everything. Now.