Sunday 30 January 2011

Eva Ibbotson

It may surprise you to learn that my favourite author (in the whole wide world) is Eva Ibbotson.
Is, I say, even though, on October 20, 2010, she died.

The thing is, it came as a complete shock to me to read the word Obituary alongside her name, because she wasn't supposed to die. Ever. Or at least not yet. Thirteen years I've been dredging up the courage to write to her, and failing miserably, because all I wanted to say was "I love you!" "You make me so happy!" And other toe-curling embarrassments.

And then a few days ago, I did what I've been doing for years - I 'searched' for her, online. And... I know. It's not about me. She was a wife, a mother, a grandmother. But I loved her all the same. She always wrote happy endings for her children's books, inspite of, or maybe because of her own childhood landscape of Hitler, and leaving Vienna, her parents' divorce and living with elderly (moustachioed) aunts; her adult romances are the essence of poetry, but practical, in the way only women can be. And when I was 18, and lupus had just confined me to bed, my father scoured the Little Shelford library, and the book he discovered and carefully brought home to me, was A Company of Swans by Eva Ibbotson.

She had lupus too, you know. Only she was 80 when it struck. And it made her snarky in interviews. (My love for her only deepened at this point, as you can imagine.)

So why, oh why, didn't I write to her?

I think... I didn't write... just in case... she didn't write back.

And I realise I have tried to be amusing, because she always was, because this is not an obituary. But I am only pretending. The truth is, I am grieving, for someone who was never really mine. But her words are with me, which is all that matters. Right? At least, that is what I shall tell myself, for the rest of my life. Is there anyone you wish you could have written to? Is there anyone you did write to? And, if so, was it a good idea?

"You read what you've written, and you realise that something is still there. Because, you know, you see yourself tottering around, dropping china, having to go to bed at eight, but somehow something of your self remains, and you have written it." - Eva Ibbotson

I love you Maria Charlotte Michelle Wiesner, otherwise known as Eva Ibbotson! You make me sooooo happy!!!

Thursday 27 January 2011

The Find

Things fall apart
at the slightest touch
New words cannot be found
only the old, looping
round and around.

Insanity can be found
and here.

Pain, of course,

Reading Rilke,
I try to breathe
but am drowned
in his sea of beauty.

His sea, mind,
not mine,
And for the first time
I find myself

- Shaista Tayabali, 2011

Horrible, horrible word, bitter. Poor Rilke. Poor me! But there it is.
The sculpture is Eve, by Auguste Rodin, 1881. You know how deeply and tempestuously Rilke and Rodin were entwined. It says of this piece ...'Resigned, sorrowful and tentative, Eve contains her emotion. She embodies a pessimistic view of human fate.' I am not pessimistic, just in pain.
The model for Eve left abruptly, so Rodin finished a second Eve. It is more refined. Too shiny and perfectly polished for me, though. I like the rough-hewn version.

Tuesday 25 January 2011


Strange days these,
that pass like water
beneath bridges.
The leaves that float
gently on its surface
may be swept away
by breezes
but the water flows on forever.

Strange face this,
that confuses the mirror.
Although the being viewed
is only one
the reflection is of two
smiling eyes
and mouths.

Happy 35th Wedding Anniversary Perveen and Chotu, dearest of parents!

But when two people are at one in their inmost hearts, they shatter even the strength of iron or of bronze. And when two people understand each other in their inmost hearts, their words are sweet and strong, like the fragrance of orchids.
- I Ching (12 BC)

Of Kings and Swans

There are two blockbuster cinema houses in Cambridge, but only one tiny Picturehouse Arts Theatre, nestled behind a missable doorway, next to a very bolshy pub. It contains the pulse of the best art house movies ever made. I didn't bother to see a trailer of The King's Speech. I knew it would be brilliant. What I didn't expect was to laugh as much as I did! Every performance is refined, nuanced and timed comically to perfection. I wanted to watch it again even as I was falling into the story. I had a killer migraine, and I was hungry (such queues for popcorn and glasses of wine - posh theatre!), but I wanted to be nowhere else. Colin Firth as King George VI, the anguished, unfortunate sufferer of a stammer, and Geoffrey Rush as his invincible, irreverent Australian speech therapist, conduct their relationship so magnificently onscreen, that they must have the most sublime friendship in real life too. Go watch if you can. And you can!

The migraine passed. And the ballet moved in.
Black Swan is a microcosm of New York City; intense, sexy, claustrophobic, unpredictable and at times, extravagantly violent. (I hid my face away several times - pathetic, I know.) It is also beauty personified; the kind that is rooted in the classical sense, of Natalie Portman's exquisite face, her disciplined hauteur, and the rare occasions when she tremulously smiles; but also in the terrible avenging beauty of ambition, of demanding bodily perfection, and its ensuing psychic chaos. There is no simplicity here. And I don't think anyone will associate the ballet with fluffy white tutus anymore. This swan grows black scales!

p.s. Happy 35th anniversary to my beloved parents and Happy Burns night to you all :)

Friday 21 January 2011

Sufi Princess, Braveheart Spy

She was born in Moscow, in 1914, daughter to the famous Sufi pir, Hazrat Inayat Khan. She was a descendent of Tipu Sultan, the Tiger of Mysore, and therefore, royalty herself. She died at the age of thirty, at the hands of the Nazis, tortured and shot dead on the floor of Dachau concentration camp.
That part was to be expected.
That she would be instantly forgotten by the British government for services rendered, was not. Her last word was 'Liberté!' before the guards brought her down.

Her name was Noor Inayat Khan. Her gentle features are evident in the image of her playing the harp. She studied at the Sorbonne and published her first book, The Jataka Tales, in 1939. As the long shadow of Hitler gathered a storm of war, Noor could not bear to stand by and watch, helpless. Despite being part of the mystical Sufi tradition, and personally aquainted with Mahatma Gandhi, non-violence was no longer a viable option. In London, Churchill's secret army were recruiting people skilled in languages, and Noor, fluent in French, elegant and sophisticated, underwent the rigorous training of learning to kill with precision and expecting to be killed by betrayal. She was known to the Germans as Nora Baker, her Parisian code name was Madeleine, and until the end, she revealed nothing. Her body bore it all, and her voice held still until that final word escaped her lips. The only word that mattered.

When the statue of Noor Inayat Khan is finally revealed in Gordon's Square, London, 2012, it will be the first statue to honour an Indian woman in Britain - and the first statue of a Muslim. Odette Hallowes and Violette Szabo have had Hollywood revere their lives, blue plaques have been flung up in their honour. Noor, who sacrificed her life for England, has become a footnote in history... because she was a Muslim woman? Or because she intended to return to India after the war to support Indian independence from the British Raj?!

If Noor could wait so long to be recognised, then perhaps my own impatience to be 'recognised' is a little short-sighted. But maybe Noor would prefer her fellow women to be impatient, to act now, to hold true. The consultant wrote me a letter, not exactly apologising for my distress, rather summarising an Action Plan for the future. Since it includes applying for future treatments, albeit at longer intervals, and recognising my need to be involved and included in decisions made regarding my treatment, I feel better. It is a start. A dialogue is always a start.

I think Princess Noor would have approved.

Sunday 16 January 2011

Sunday Sweep

                                                            Kettle's Yard
My floaters fall like dust moats
across the cortex of my eyes
My humors break, and make
pictures, dancing shadows, light.

Sunbeams shaft
through Winter's green
and bare brown leaves
I pass through rooms, a silent ghost
gathering dreams.

Bare feet and cloudy sight
half whole and half unknown
My hair a mess of springy curls
My pen, my soul, at home.

(I have been unwell for days. Except for the candle flame of your love and comments, I have been a shadow of myself, a camouflage of the grey January rain outside. Today, though, the sun poured through the house, spotlighting the tidy rooms, the air of celebration my brother has created in honour of the arrival of our house guest, his girlfriend, who is on a flight from Malaysia as I write. Welcome home Angelina!)

Thursday 13 January 2011


In order to demonstrate exceptionality the patient must be significantly different from the reference population (i.e. all other patients with the same condition who do not fulfil the treatment criteria) and there must be good grounds to believe that this patient is likely to gain significantly more benefit from this intervention than might be expected for the average patient with that condition. The fact that the treatment might be efficacious for the patient is not, in itself, grounds for exceptionality. This in essence requires the clinician to make a case why this particular patient should be funded when others will not receive treatment.
from the First National Immunoglobulin Database Report (2008-2009)

So there you have it. Last night my consultant rang at 8pm and we finally had a chance to communicate. And of course I had to try to convey my exceptionality. This is not easy to do when your basic nature is to be humble enough to appreciate everything, and give blessings for the miracles that have already occurred. But I am at a crossroads now. Either I wimp out, bow myself weedily off the stage, or grow some muscle and become the advocate I needed myself to be when I was 18 and got lost in the NHS system. There was an overbearing consultant then, who behaved atrociously and scarred me (and my parents) for many long years. But scars lighten with time, and are no excuse to allow the behemoth of the national health service to intimidate or terrify me now. Especially since...

On a globo-social level, Rizwan has most recently been involved in projects in Malaysia, dealing directly with youth involvement in political change, anti-trafficking organisations and ensuring women's rights and participation in urban development. On the home front, he is resting up before the next leg of his journey into the globally connected social movements in Africa. And, more immediately, awaiting a very special arrival! He writes all about his Angel here in his own blog...

Exceptionality. It is easier to confer on others, harder to prove one's own. What is my worth in funding? This morning I had the all-important funding-dependent blood test to check the depletion levels of my B-cell lymphocytes. When I asked the consultant why this test was not done regularly on me, she said it costs £100. I did not know how to reply. Did she mean for me to be shocked? Do you remember that song, How much is that doggy in the window? The one with the waggly tail? That is what it has come down to for me. How much is that Shaista in the window? I do hope there's more to her tale. Woof woof!

Wednesday 12 January 2011

A Symphony in Waiting

This hour is off the cuff
a lost melody
to the perfect rhyme
This hour is all mine -

The fan blows
my body heat
so close
I cannot breathe
so close
I cannot reach
the lyrical seat.

All around me is thunderous
No rain no sound
Just the metaphysics
of another silent round.

~ Shaista
part of Magpie Tales

Saturday 8 January 2011


One can never consent to creep
when one feels an impulse to soar
- Helen Keller

 By the time she was seven, Helen Keller was already in despair.
And it was not bleak because she could not see or hear but because nothing had a name. And, she admits, she was spoiled rotten. Every plea for attention (every tantrum), was rewarded by silencing her with sweets.
Helen, the graduate, and Annie, circa 1904
And then came Annie Sullivan.
And water felt like it sounded, spilled into her hand. And doll - the thing itself could be smashed across a wall, but the name? The name remained, carved, curled, into the palm of her hand.
There is a picture of Helen dancing with Martha Graham, reading the lines of the faces of political heads like Reagan, Roosevelt and Nehru, laughing with Alexander Graham Bell.
Expecting the worst, she saw joy because the right person entered her life, and fought for her, advocating on her behalf only for a while, until Helen had the language to do so herself. And on those birdwings she flew and flew into the limitless skies.

Helen K with her long time friend Eleanor Roosevelt, 1955
The consultant wasn't there yesterday. In her stead was a junior registrar, in no position to deal with the fierceness of my own advocate, my brother. She was a lovely young doctor, very cheery and glowing with six months pregnancy, but she was not the face I needed to see. And yet... I see this as part of the learning curve. Today, I need my brother to advocate for me so I can learn the tools, the very language of successful negotiation (his is more than a skill, it's an art!), so that tomorrow, I can do so myself.

And when tomorrow comes, these butterflies will turn to birdwings. 

Wednesday 5 January 2011

Just a Spoonful of Sugar...

...makes the medicine go down,
the medicine go down... the most delightful way
- Mary Poppins

Spring Tonic, Norman Rockwell, 1936
It is the oddest thing.
As children we spend our life dreading medicine. The taste. The smell! And knowing instinctively that sneaky manoeuvres pulled by Mary Poppins-inspired grown ups never quite do the trick. We know it's still medicine, the sugar does not disguise it!
And now, here I am, preparing to do battle with my consultant, all for the sake of medicine.
America is in the process of approving the first treatment that might possibly be a solution to the incurable nature of Lupus. It is called Benlysta or Belimumab (funny name, huh?), and it is an investigational human monoclonal antibody drug.
I myself am on Rituximab, also monoclonal antibody therapy. So I must be on the right track. I know I am. So close.
But it is such a fight to 'deserve' the treatment. And be a good investment for the high risk. You find yourself fighting for a possible future you don't know for sure exists. Trying to prove the worth of your individual soul to a near stranger, a figure of authority, within fifteen minutes, without descending into emotion, becoming antagonistic, or losing hope.
Doctor and Doll, Norman Rockwell, 1929
Heart, soul and poetry have little place in the consulting rooms of a Head of Department in charge of funding. A medical degree would be brilliant, but even that is no guarantee. So what does that leave? A sense of dread? A sense of humour?
I need the right words, wisdom and courage.
Send me some of yours ok?
10:30 am
Clinic 5,
Addenbrookes' Hospital.

Saturday 1 January 2011

Hope's Balloon

I am always on the verge
rocking on the edge

heels on pain
and toes on joy

here comes Hope
now watch me fly!

Happy New Year beloveds!!