HANAFUBUKI

I rarely cry, because I cried so much in the early years post diagnosis of this and that. But yesterday at the hospital the gentle kindness in a friend's 'how are you?' sent me to the tissues. I've been having a rotten time with the disease acting up, which always makes my world narrow, my fears bloom. Meanwhile April is coming to an end and our cherry tree has stretched from white glory to a brown study. 

Angelina (my sister) had some friends over for tea, and their daughter, quiet as a mouse in the house, blossomed into a mixture of Ariel and Puck under the cherry tree. Painstakingly, she gathered individual sakura, collected them into her hat and then poured them over our heads. 'If only,' she mused, 'the petals could fall all at once!' I have since learned this is exactly what happens in Japan after the hanami festival: the sakura falls thick and fast and the word for this is hanafubuki. 

After hospital, coming home to little girls who hand me petals and feathers, is a delight…

I like the floophing, flumping feel of sakura. And so do my nieces who carry the fallen delicates across to me and fix them in my hair. Today I feel more alive than yesterday. Everything that was not good yesterday is better today. Angelina whipped up some baking magic and delivered apple roses to my door even though she is sick with the streaming cold that has beset the twins. I am being kept at arms' length for my own sake.

With that special evening light streaming in this evening, my nose dusted with icing sugar (a hanafubuki of the baking kind), I feel hopeful again. And so it swings. Apparently this is what creative types do. But even in my despair and even in my hope, I am aware of the stories round the globe, and since there is little I can do, for now I shall try to keep up morale. Blow down cherry blossom if you must, I am standing in the sun.

VANESSA AND HER SISTER (AND ME)

Yellow bunting hangs from trees, and since there is only one (stalwart) lady heading up the queue outside the Cambridge Union Chamber, my friend Sylvia, my mother and I decide to lounge in deck chairs, have tea and elderflower, and discuss literature: the perennially delightful question and answer of 'What are you reading?' and 'What did you think?' When we are satiated, we turn lazily to the lady in the queue, only to discover there is now a snaking river of women and we must forfeit our front row seats. We are here for Vanessa Bell; Vanessa first, and then her sister - today Virginia Woolf is the one in the shadows. Never far, or hardly done by, but the conversation this afternoon between the doyenne of historical fiction, Philippa Gregory, and the darling of the Bloomsbury world, Priya Parmar, intends to focus on the painter, the portrait artist, the one who held the centre so others could come apart - Vanessa Bell.

Priya used to be a blogger (although she promised me at the book signing she would restart her blog) so I already knew she had been friends with Philippa Gregory for a while - ten years I discover. Philippa (I can call them by their first names, can't I?) began by determining that the tenor of the interview would be intimate, they would talk as though they were at breakfast or tea, interrupting as friends of longstanding do, and interspersing memory and anecdote. It was utterly perfect. It doesn't get better for faithful readers than to have writerly friends, genuine friends, chat, confide, illuminate. Witness: Neil Gaiman with Terry Pratchett, Junot Diaz with Toni Morrison, Lena Dunham with Jennifer Saunders...

It began with the chicken story - they both had chickens at the first moment of email encounter - and meandered through the personal responsibilities of holding history in your hand and then braiding it with imagination into fiction. At various points, I focused on Philippa's shoes - they were deep electric blue, heeled and seemed to have a life of their own. My view was slightly squinty, between heads but I had been too shy or diffident to ask the volunteers whether I could snag the empty front row seats for the sake of my woebegone eyes. They were reserved for the hearing impaired, not the visually impaired. Maybe next time, I'll ask. I refrained from audience questions too - although I wanted to know if Priya came from the harmonious duality of an art/writing family as I do. She captures that particular tension of roles once defined in families, being rearranged. But art in any family transmogrifies its inhabitants. It is never enough to be painter or writer or poet or scientist. We must be all, if so inspired.

Today marks a week after the last Rituximab cycle. I have since seen my consultant and although she agrees the disease is active, she is hopeful the chemotherapy will help. I used to have a doctor who concluded every conversation with the words, 'Let us wait and see.' So it is with my consultant (a Virginia Woolf lookalike if ever there was one). We are waiting, and seeing. I am trying my best to brave the daily fevers with as little anxiety as possible. And only those who know, know. 

When I presented my book for Priya to sign, and mentioned I was a little in love with her blog The Plum Bean Project, she was surprised. But her sweetness radiates and she graciously accepted my fangirling homage. The moment was, unbeknownst to me, captured by the official photographer of the Cambridge Literary Festival, Chris Boland, who being a friend, sent me these pictures...

What he didn't capture was Mum, who is an avid fan of Philippa Gregory, introducing herself and fangirling in a much more sophisticated, respectable way. Author and appreciative fan shook hands, because Mum had brought none of her many Gregory books. All in all, it seems only right to start the nieces young on the wonders of historical fiction…

You can find more of Chris Boland's photography at his website Distant Cloud Photography.

SHAISTA'S BOOKS

This year begins the sixth year of my blog Lupus in Flight. Six years! I have never been so conscious of time's passing and her markings as I have this year. It feels a little breathless all of a sudden. It feels as though everything has already happened. Everything that truly matters is already in place. I was a curly haired child with goober glasses only yesterday. Tomorrow my nieces will turn thirteen, my cousins will celebrate their silver and gold anniversaries, my school friends and I will look into each other's eyes and shake our seventy year old heads in wonder. How? When? we will say...

My body hurts today. I stop, breathe, look deeply for the site of hurt, but I can't quite separate it. Hurt is always difficult to isolate. Remember the scene in Amélie when the little boy's marbles, hard won in the playground, burst out of the pockets of his uniform and to his horror, roll away? Never to be gathered. The best moment of his life becomes the worst, the unforgettable tragedy. That's how it feels, sometimes. All my precious marbles are in place, tucked safely into pockets of my soul, but my body's cells and organs are threatening to tear the seams, spill everything out. I rely on you to remind me we are all connected by the red thread and nothing that once was found can be lost.

So it is with my books. The last time I read a book all the way through in a few sittings was in 2012, at the start of my Masters. The Brief Wondrous Life of Oscar Wao by Junot Diaz, in case you were wondering. Since then, another glaucoma operation has put paid to my ability to read with any comfort at all. I can still read but I find myself picking at the tops of books, first chapters, beginnings... And then hurriedly gathering another to me. I have read so much and want to re-read so many, but there is always more and more to read. Social media is battering away at my eyes with its continuous streams of articles. All so interesting, so much entirely unnecessary. I must choose between this and that, but which to choose? Either I disengage or try to keep up.

Stop the clock for a moment and celebrate what you have read, Shaista, is what I tell myself. So a week ago I started a new blog - a library is what it intends to be. A reference of books I am reading, have read, crave. The title is simple - Shaista's Books - no Latin words here. Just a Persian one. I have already written four posts so will you stop by and take a look? The posts will be linked to the top right hand corner of this blog so you can always access the other blog. I am often asked what I'm reading or if I have books to recommend; the new blog is the beginning of my answer. At any rate, it's an experiment, just as this blog once was!

HOW TO SURVIVE RITUXIMAB

1) Do nothing.

2) But when the drug, which makes your heart and mind race, wakes you up before dawn, lie there and hope for sleep again.

3) When there's absolutely no hope, totter out of bed into the kitchen, scrabble around the fridge and settle on a virtuous carrot.

4) Wash the carrot down with a few ginger biscuits, a glass of water and several white tablets. Remember you still haven't renewed your various prescriptions, promise yourself you absolutely will attend to it later and then forget all about tablets by

5) finding the most mind numbing documentary on Netflix. It's called, say, 'The Queen of Versailles' about a rather grimly mismatched couple determined to build the biggest, brashest house on American soil. You will retain nothing later except a solitary fact about the real Versailles almost bankrupting France with its gilt and glory. This from google and not the documentary.

6) No fever or tachycardia yet and you float about between bed and kitchen, eating noodles, watching rain turn to sun, and wondering why you aren't simply stepping out of your little house and walking the half hour to your nieces, one of whom has taken to saying, 'Shai! gone!' with a sad little flick of her hand.

7) At 4 in the afternoon, you have a high point of wellness. You steel yourself not to get dressed or put your contacts in, but to sit, still pyjama clad at the open window, sun blazing into your half shut eyes, drinking coffee laced with syrup and two Jaffa cakes melting as fast as you can eat them.

8) By half past five, sun turned to long shadows, you are in bed with a creeping temperature, a steady marathoning heart and a throat that burns with a thirst you cannot pacify. In the doorway, an old fashioned tape player and Catherine Alliott's rural comedy A Crowded Marriage. A fox has decapitated Cynthia. Not the heroine. The chicken...

9) You think about washing your hair.

10) You listen to the birds.

11) You write a blog post about how you survive Rituximab the wonder drug. The cancer drug. The lupus drug. The soon to be Parkinson's drug. You think about cupcakes, not the cake but the frosting. And washing your hair. And how quiet it is because the tape needs to be changed to Side 13. You take a breath, prepare to peel the blankets off your curled up legs and brace for cooler air. There will always be more tea, hot buttered toast and you will

12) begin again.

BLOSSOM ON GREEN GABLES

A week into April and it is beginning to look a lot like summer might, just might, roll her majestic skirts into England.
It has been a difficult year for me so far, and I can't say it has become any easier, but a few excitements have come my way and those have distracted me from the meaner intent of the two warring diseases at hand.

It hasn't been the easiest of times for my father either. Sometimes the endless darkness catches up with him. En désespoir, he decided to listen to audiobook versions of Harry Potter and Anne of Green Gables. The Potter hasn't really held him, although he gave his best attention to the understanding of Quidditch. Anne of the gables, the green gables of Prince Edward Island? Now she has of course enchanted him. Suddenly, blossom, and the return of my father's smile. Still a little hesitant, but there is hope. There's always hope where there's Anne Shirley…

This evening I reminded myself of a loyal dog awaiting her beloveds. I kept scurrying to the window to check whether a taxi had drawn up. Not yet. Now? Not yet... The taxi containing several precious bodies of Brother, Sister, Twin Niece 1 and Twin Niece 2. It's the sort of thing Anne was always doing… waiting for Matthew to arrive, waiting for Marilla to decide she didn't mind a girl after all, waiting for Gilbert to wake up and notice the red hair was auburn now. Definitely auburn...

THE EXPERT OF SMALL THINGS

Picture Cambridge on a sunny morning. Here, this will help...

Imagine arriving, not at the entrance to an imposing college courtyard but a court nonetheless. Imagine being greeted by your favourite surgeon and feeling perfectly at ease as you climb some stairs with him by your side talking about your recent trip to India...

Imagine almost reaching the top of those marble stairs and being dazzled, not by the (really quite cool) ceiling architecture, but on finding the room packed full of strangers, all sophisticates in the field of neuroregenerative science expecting you to present the Human Face. 'Just a handful of people in jeans' was how The Blue Eyed Surgeon had described the event to me. I turned around and pretended to flee down the stairs...
The focus on this year's course at the Cambridge Centre for Brain Repair is on inflammation and I was one of the patients interviewed - the other was a man living with Parkinson's Disease, whose life story included surviving the Gulf War - if you can describe developing Parkinson's as survival. Apparently the military have taken partial responsibility for what is believed to be a result of chemical nerve agents deployed - I didn't realise almost half of all Gulf War veterans are suffering some form of multi-system illness. I thought the soldier was a hard act to follow. He had a DBS in his skull! (If Keith hadn't leaned over and explained what a Deep Brain Stimulator was, I wouldn't have known either).
Prof Martin introduced my case, asked me on to the stage to elaborate on life with SLE, and then presented a fabulously grisly series of images and video footage of the various operations we have endured together (at opposite ends of the knife and scissors). I realised that it was the first time I was being given the opportunity to weave glaucoma and lupus into the same conversation. In clinical environments I am usually expected to siphon off the relevant aspects of my case to the particular departments. Here, I could be whole for a while.

When the floor opened up to questions, a man at the back of the Cripps Court auditorium asked me a delicious question about the marriage of living with chronic disease and my life as a creative writer, which gave me full opportunity to be my poet self. In fact, through the course of the interview, I found myself mentioning the fact that I am a poet several times to my own surprise. The word kept falling out of my mouth. How have I coped with life endangering and sight endangering diseases? Poetry! The gift of finding beauty and connections - the gift of seeing more than what is visible or tangible or even real in the most concrete sense. It is an unreal thing to be sick all the time. Unreal to have been contemplating your mortality since you were a teenager. I can't begin to imagine how I would or possibly could have unravelled my life without literature, art and poetry.
I thanked the stranger for his lovely question. Later I learn that the 'nice man at the back' is only the head of Stem Cell Medicine at Cambridge - Professor Robin Franklin.
Yes, I'm name dropping! What of it? And yes, I took a selfie before I left the house - because who doesn't?