TWO TREES AT CHRISTMAS (A CHRISTMAS WISH)

It’s Christmas time. A time for miracles. A time, I stubbornly insisted, for a real Christmas tree. ‘But the needles,’ my mother said. ‘The mess...’

And even so, she relented.

Just a small one...

Well, actually... in the end we got two. One a nice normal-ish size... she was very fluffy when she came out of her netting as though to say, ‘Here I am! Ta-dah!’ And also a very tiny little fir, you almost have to squint to see her. Except she is a bright green and also had a bit of an air about her, something delightful. Too small of course for the decorations I have laden her with - two serious mice (occasionally sad in a certain light), one smiley mouse and a deer... which arrived from my friend Meme in Australia. A friend who also has a host of 'co-morbidities', like so many of us do... from vasculitis to neuropathy, Crohns to hypothyroidism. Or just the usual... fever, swelling, pain.

We are supposed to thank pain, thank swelling, thank these harbingers, which are the reminders of our body’s needs. If you are in pain, then you are alive, said a friend of mine to me once. He has Parkinson’s and was a fount of hard-earned wisdom. I have always tried to follow his advice. Or at the very least, remember it.

For me, this past year has been very ‘triggering’ as they say. But I think we are all triggered almost continuously? Constant barrage of televised, radio-ised, internet-ised streams of all the desperate stories of our lives across the globe, stories of politicians not really seeming to care, and also stories of people doing wonderfully well with incredible achievements – seemingly superhuman achievements. And some of those extraordinary achievers are people with illness. Take Mary Frey, of The Frey Life channel on YouTube. She has cystic fibrosis and an incredibly inspired following... 

Or Molly Burke, who is a blind YouTuber and also has a hugely inspired following...

And then of course there is Selena Gomez who extended the miracle of her kidney transplant story (donated incredibly enough by her best friend Francia Raisa) by sharing it with the public. I am sure everyone with lupus had friends sending them the viral clips of Selena’s story...

What we rarely hear about are the ordinary folk, you and me, getting by on our own rations of kindness, compassion, courage and fortitude for ourselves and those around us. I believe we need the simple stories to nourish us, to withstand the daily onslaughts of global and internal suffering.

So here we are this Christmas time… and my wish is a simple one. That you feel nourished as this year draws to a close, and that somehow, in some small ways, the miracle finds you and those you love and so spreads on, and on, outwards.

With love,

Shaista 

NUREYEV: LEAPS OF FAITH

Rudi made me cry. 

I don't cry at or during films anymore, mostly because the varying levels of discomfort my eyes are usually in, make it hard for me to escape entirely into the visual world before me. But the life of Rudolf Khametovich Nureyev contained within a single powerful documentary, All The World His Stage, had me in tears for much of the second half.

Exile is a common enough story for many of us. Voluntary or involuntary. But in Rudi's case he was a pawn of a nation, a government, an ideology that his body and will refused to succumb to. Of course, his defection in Paris in 1961 had nasty consequences for his friends, the 'kitchen culture' crowd, who had, in secrecy, danced and recited poetry and played under the wrap of darkness. But they separated him from his mother, and more than anyone else in his family, I think that may have been the worst of it, though in the end they let him back for the days before her death. They say that although she was failing to recognise anyone else, she knew he had been to see her, but what was that one moment against all the years - the millions of yearnings, and achings for home?

And then there was Dame Margot - La Fonteyn - the substitute mother figure? No, she was more, she was everything to him;  after she died, he had no one; he would call friends before dawn, and say nothing, only cry. She was on the verge of asking her husband Tito for a divorce, and then he got shot, and Fonteyn's mother said how will it look if you don't go immediately to his side? How will it look? Even the greatest prima donna ballerina obeys when her mother says those four sinister words. That was the end of Nureyev and Fonteyn, so said the documentary, although in reality they danced for years afterwards, and stayed close until her death. 

The violinist Yehudi Menuhin called Nureyev a panther. Parkinson asked him to describe how things had been in Russia when Nureyev was a child. 'Bad,' replied the dancer. 'But how bad?' pressed Parky. Because people always want to know how bad, from the safety and comfort of their own lives. Richard Avedon photographed Nureyev's leaps into air as though he were challenging gravity to call him merely human, but Bob Dylan wrote 'No one is free, even the birds are chained to the sky.'  

The documentary was at once the embodiment of freedom and simultaneously a chaining down, a weighing down of things that are bigger than us, wider than we can control. Politics, AIDS. Being called Russian when you are really Tatar, but no one knows of Tatars or their complicated history with Russia...

 Ah... go watch the documentary if you can. Also Lady Gaga: Five Foot Two. Also M.I.A, about the Sri Lankan Tamil English singer and activist Mathangi 'Maya' Arulpragasam. Also, the manager of the Cambridge Arts Picturehouse has promised me the Nureyev poster when the film has finished running... these are moments worth living for.  

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.

THE YELLOW WORLD

I don't normally do book reviews because I've always trusted that books find us and even a passionate book recommendation cannot save it from poor timing. So this isn't a review, just an About A Book I Liked. It's called The Yellow World and it is a very neat, concise memoir by a man who once was a boy who had cancer. I know. I'm really selling this to you :)

I felt quite jealous reading it because in the book, Albert Espinosa recounts how the cancer kids (the Eggheads) were part of a tight, intimate clique. They shared their lives, experiences, journeys, losses and banded together against and with the different shades of the disease. I've never had anything like this. Mine has been a desperately lonely road in the hospital, especially when I was a teenager and even in my twenties. My friendships have always been with the staff, especially house cleaning and nurses.

On Thursday, during my infusion, I met a young man who could easily have been Albert Espinosa in disguise. He was freshly graduated and didn't mind letting everyone know he was now part of The First Class With Honours brigade. 'Me too, me too!' I wanted to boast. He was very cool in a Cool Patienty sort of way - showing off the expensive diabetes contraption attached to his flesh. We discussed the possibility of subcutaneous infusions which might be in my near future (the prospect of self injecting does not appeal), and he had some good advice about it. He talked a mile a dozen, but what I envied was his life in his usual hospital, on his usual ward. 'Everyone knows each other. We've all been coming there for years. We have the same three nurses. It's brilliant!' And then he dropped the real gem - they're allowed to manage their Own Drips! That's unheard of. I've never been allowed to manage my own medication on the infusion bay. How green I felt, how green with envy... I doubt we will see each other again. As the record stands, I don't think I've ever met the same patient twice and I've been at this gig for almost seventeen years now. I did meet a lady, once, for a second time - she recognised me because the last time we'd met, I'd inflicted a leaf on her with a poem inscribed on it...

So I was scrabbling around trying to find a nice yellow image to go with my yellow post when I came across this bench... derived from the concept of Random Acts of Kindness, the purpose of the yellow bench is to invite strangers to share a moment, a chat. The business concept, of yellow benches everywhere, struggled to survive red tape and city councils, but one day a woman volunteered to carry the mission forward and put a Yellow Bench in Dublin. Isn't my love of Ireland justified again and again? (I can imagine some of my Irish friends thinking less than salubrious thoughts about the TYPE of person that might want to 'chat', but then again, you never know... you might meet someone extraordinary...)

Images of The Yellow Bench taken from All About Ideas

MALALA

A river streamed 
through my room.

It scared me
It broke my wardrobe
Scattered my clothes
It released my dresses
from yesterday's bond
It made me wear them

I wore it
and it wore me
Reminded me...
Oh God, it was my love's 
favourite, this dress,
and this waistband
and all these things...

A river streamed
through my room
And my room
became a garden.

Some years ago I watched a documentary called Syria's School. For me, these occasional glimpses into the lives of my younger sisters across the globe afford precious viewing. The documentary offered the girls at school the opportunity to write, and present poetry, to some of the leading literary minds in Syria. One poem captured my heart, moved me so deeply, I rushed to find a pen and scribbled the poem (above) from memory. The poet's name was Nour Aibash. I wonder where she is now, and if she is still writing. Last year, I watched a documentary on Gaza's children, and a little girl called Amal tugged at me, so I wrote her a poem called 'Crossing Borders'. She has shrapnel buried in her brain, behind her eyes. You can imagine how this affects me. I cannot think of Amal without my eyes blurring with tears but I hold her in my thoughts. Across the globe, the fierce courage of Malala Yousafzai is less unknown....

Gunned down just three days ago, Malala takes our breath away because she is still fighting for her life, knowing her worth, knowing there is a greater battle awaiting her for the rest of her life. Awarded Pakistan's first National Youth Peace Prize, this lovely 14 year old has already witnessed beheadings, public floggings, and is the recipient of constant death threats. This violence has been countered by her lucky fate of being born the daughter of a poet, and educational activist, who has inspired in her the stubborn, feisty spirit of boldness that I recognise in myself - a father who is proud of his daughter, and tells her so openly from a young age, plants a seed of belief that no other man can destroy.

Malala means 'grief-stricken' in Pashtun. The thing that Malala's father feared the most has come to pass, but recognising the face of this kind of courage, I feel sure Malala is glad it is her and not her father who stood before the bullets. Aung San Suu Kyi is the perfect example of this face of courage, of a daughter determined to live the life of a beloved father cut short in his heroic prime. It is a good time to be a woman, Malala. Despite the adversary trying to convince us otherwise, you are the greatest proof of it.

(A wonderful documentary called Class Dismissed about Malala in 'her' Swat Valley was filmed by Adam B. Ellick in 2009 should you wish to know more.) 

IT ARRIVED!!

A package arrived today with the hottest sunshine of the year... from Eire...

The brightest day of the year completely obscured the inscription I was trying to show off!!

MARIAN KEYES MARIAN KEYES MARIAN KEYES!!!!
So there I was, on twitter, recommending 'The Princess Bride' to Marian Keyes, best-selling Irish author of fabulous books, when she replies saying she's never seen it. I offered to send it of course, but privacy and all that... anyway, there was a silence for a while. A couple of weeks later, Marian Keyes goes on a hunt for me - me!! - to find the Lupusgirl who recommended the lovely film. And then I was found. And Marian asked how I was, and I said I was off into hospital and she said, "Can I do anything? Anything at all? Signed copy of a book?" And I says, "Oooh yes, please!" Shameless, I know. But this may NEVER HAPPEN AGAIN!!!!

Isn't she lovely?? She manages to sprinkle gold dust over our lives from a house in Dublin. She loves chocolate and cake and high heels. She understands suffering. She values kindness above everything. Only the kindest of people could send a signed copy of a book just to wish me well. And not just any book - but, on her authority, her own personal favourite.... D'you remember when I wrote about not writing to Eva Ibbotson? I feel as though Marian has given me a chance to say thank you to a beloved author in the here and now, so I'll never be haunted by ingratitude again!
So just to be clear...

MARIAN, I LOVE YOU!!!!!

THANKYOUUUU!!!!!

June the first, a bright summer's evening, a Monday. I've been flying over the streets and houses of Dublin and now, finally, I'm here. I enter through the roof. Via a skylight I slide into a living room and right away I know it's a woman who lives here... 

(from 'The Brightest Star in the Sky')

Do You Know How To Draw Camels?

The most significant step you can take to turn your life around is to learn how to draw camels.

- Phil, and Clyde the Camel

Finally, after weeks of waiting and watching, the skies have opened, and the rain is tumbling down. Sitting on the ledge beside the conservatory, I let the rain soak in. Outside, the birch and cherry are dancing and carousing, like Rafael yesterday, little arms and legs busting moves to hip hop beats and lullabies alike... chuckling, gurgling, squirming in the happy wet of bath time.

This morning marked the passing of the last of my father's brothers. On such a day, to the sound of rain, grief melts quietly away. On such a day, with the sound of rain, words stumble on the page.

Like my father, Uncle Mustafa spent many years in Zanzibar, East Africa, and recalled in great detail, and with pleasure, the names of places for my brother's recent pilgrimage there. Marriage proposals aside, Rizwan's work in Africa continues apace. His ability to inspire, motivate and challenge fellow beings is evident in this blog called How To Draw Camels, the premise of which is to teach the world how to draw camels while showcasing and supporting social enterprises and entrepreneurs in West Africa. I am quite fascinated by this blog, not least because of the high regard the author holds my brother in :) Here is what he wrote:
Someone you should know: Rizwan Tayabali
It is because of him that this site exists. Not only did he provide motivation, he offered invaluable guidance in developing the site and the project. He did not ask for anything in return. Rizwan travels around the world offering pro bono consulting to social enterprises. It is stunning how much ground he has covered. Most recently, he has been in Southern Africa. Before that, it was Southeast Asia. I encourage you to check out his work and spread his vision. He has been incredibly inspiring to me personally and I think a lot of people would benefit from seeing how he spends his days.

Well. Oh well, if someone writes such glowing words about my brother...!! In Bamako, Mali, a trickle of water emerges into basins which are dry by afternoon. So much rain bucketing down around me, while women walk miles, pumps are needed, new water solutions... you all know this story. So let's learn how to draw camels together! Let's buy an organic Bactrian Camel T-shirt! Watching my younger brother and sister teach little Rafi how to do everything while learning so much about trust and faith and practical parenting solutions themselves, I really understand the simple creativity of this idea. You may start with just a squiggle, a tadpole of a face that looks nothing like anything recognisable, or with this:

and, then, with a little bit of practice, move niftily on to this...

Or from this (who looks more anxious? Grandfather or grandson?):

to this :)