Exceptionality

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!

Ideal Diaspora

Recently I wrote on my blog about the changing shifting states of my bedroom, a space that continually provides me with some measure of physical artistic freedom. And yet, a few days ago I was having a little moan about the constraint of living within the sphere of four walls, imagining myself one of Michelangelo's unfinished works of captives within marble, attempting freedom, never to be freed. Or like Ai Weiwei's sunflower seeds at the Tate Modern; a vast carpet of porcelain replica seeds, each hand painted and hand fired by inhabitants of Jingdezhen, free to be stepped upon by the public, but none to be opened, none to bear fruit.


That same day, the Telegraph magazine arrived, with James Mollison's photographs of children's bedrooms all over the world. From Ciudade de Deus in Brazil to the Yunnan province in China, a Palestinian refugee camp in Hebron to the Rendille tribe in northern Kenya, the gulf of inequalities and the bridges of similarity are all here - from the guns (for fun, Kentucky) and the axes (for work, Senegal and Kathmandu) to the dolls, the beauty pageant queens and future rabbis (Tokyo, Kentucky and Beitar Illit). This here on the left is Roathy, who is eight and lives on the outskirts of Phnom Penh in Cambodia. His home sits on a huge rubbish dump and his mattress is made from old tyres. He shares the space with five thousand others.

The final picture is of my elder brother, who is at this very moment in Phnom Penh, where Roathy is. They probably will not encounter one another. But then again, life is strange and powerful encounters await us at every turn and on every journey. Rizwan's globo-social projects include just such encounters. I am not sure what he remembers of his bedroom in Bombay. It was a multi-purpose room for most of our childhood. I had torn out posters of Princess Diana and Mother Teresa from a Hello magazine above my bed, I think he had his own drawing of Bruce Lee for a while. What we shared was the light pouring in from the windows and rain from the balcony, love from our parents and friends and books and games and lullabies and prayers bookending our days and beginning our nights. I love this picture. It contains everything. The ancient stone carvings of Angkor Wat, a book, a travelling rucksack, light and his smile.

Journeys Into The Unknown

A few posts ago I dedicated a poem called Footsteps to my friend and fellow blogger, Renee. Her daughter Angelique let us know of Renee's passing. When I wrote to Angelique, the word verification letters spelt her mother's name. My own mother, sitting beside me, was moved to tears, but I felt happy and utterly, confidently assured that Renee, like all my spirit guides, will always appear when she is needed. I also feel sure she must be generously visiting all her many, many readers, sprinkling a shiver of laughter and that unexpected pleasure that only comes with brushing fingertips with the happy unknown.

Into a different unknown, travels my elder brother on the second leg of his globosocial adventure, the first part completed in Central and South America, this time to India. The journey began in Mexico City last October, and after 1000 hours of pro-bono work across 60 social enterprises and NGOs working with literacy, poverty, social discrimination, media branding and financial sustainability to name a few, you can imagine my pride at being his sister!

Of course, at the moment he is, as usual, cutting things very fine... the flight leaves in a few hours from Heathrow, London, and Rizwan is still very much at home, in Cambridge, watching the IPL cricket with my father!

My brother carries with him precious cargo. A few of my father's paintings for his friends. My parents' paintings have been travelling across the globe for thirty years and reside in homes I have never visited. Someday, when I least expect it, I shall come across one of their paintings or portraits...

Perhaps our journeys are not so very unknown. After all, we are always travelling together.

first image from Renee's blog

second image, one of Father's treescape watercolours