ASTRA ZENECA ONE

This afternoon, I had my first vaccine jab. Twelve weeks to go before vaccine part two. Which means it will be May. Imagine that. Imagine wisteria. I’ve forgotten what May looks and feels like. This has seemed like the longest winter, bookended only by a mizzling spring. It is raining even now, as I type. 

Ever since Brigadier Phil Prosser took charge with military precision and strategy, millions of UK citizens are being vaccinated in a steady stream. I don’t think the scientists envisaged a twelve week gap between doses, but the covid narrative is a long one. This evening I have felt a bit grotty, with a headache and a slight flu like response. My arm feels a little heavy. But my mind was occupied with what my mother would describe as the last thing I ought to be watching: Russell T Davies’ five episode drama ‘It’s A Sin’ - his first determined effort to remember the young boys who faded fast and terrified from the HIV/AIDS pandemic of the eighties.

Watching a period drama, one ought to feel at least as though the subject is familiar and known to us after the passing of decades, but AIDS is still far removed from ordinary conversation. Lupus and HIV patients share many clinical similarities with weakened immune systems, but inhabit opposite ends of the spectrum  in terms of public scrutiny. The lupus patient is left alone, to her own devices and need not fear the cost of living as much. What we possess in abundance is the empathy of knowing what it is to fear one’s own body, obstinately dancing to a dissonant tune. Why does visibility take so long? Thank goodness for the writers and dancers and musicians who make art, make beauty, even when it hurts.

John Lam, Vietnamese-American ballet dancer

A THEORY ON HAPPINESS: 100 DAYS, 200 GIRLS

A friend alerted me to an online community activity called #100happydays. 100 days, 100 pictures, 100 moments of happiness recorded and shared between friends or the wider public. I was intrigued by the aspect of a happiness discipline, which strongly resembles a gratitude list. If something makes you happy, you are grateful to it, for it. I have been 'playing along' for a week, although this is a practice I made a part of my life ten years ago, when I realised my definition of happiness was the ability to be grateful.

On 14 April, 200 heavily armed militants in 20 vehicles burnt down a school in Chibok, Abuja, Nigeria, and stole 200 schoolgirls. One schoolgirl for each terrorist. The name of the group translates as 'Western education is forbidden', and the leader has his name mentioned in news reports. It angers me that I know his name, have seen his face; what of the girls? I only want to know their names, and see their faces. But when I do, I pray when not if, what will I see written on their faces? That is the real terror.

It has been three weeks, and 11 more girls have been abducted. We are aware, we are awake to this crime, and can do nothing to prevent the trauma the girls must already have suffered.

This month continues the twenty year anniversary of the 100 days of genocide that took place in 1994, in Rwanda, beginning April 7th.

Always, behind the facts are names...

How are we to look into the face of our own happiness without seeing the trauma and unhappiness of others? Our minds are fragile things, and our spirits need to be nurtured and nourished so that we can bring our children up into a world of hope and possibility and joy.

I think this might be the true purpose of the #100happydays movement. It seems frivolous at times. And at other times, absolutely essential.

'ONLY CONNECT'

My mother and I can never agree on which year we travelled to Madeira. But I have journals for every year, and so I have checked. It was 2004. At the airport, we were unable to resist buying a Bird of Paradise bulb. It held promise, and we were prepared to be patient. We waited and watched over the plant as it grew and grew, green, leafy, tall. But we were really waiting for the flash of orange beak and blue headdress. It has taken nine years for the first flower to grace us with her presence. NINE! I feel anticipation of something special heralded and, at the same time, desperate - imagine waiting on a flower!

The sun is shining today, and I am twice returned: once from a flying visit to Ireland again, to attend the first public reading Marian Keyes has done in four years, since the axis of her world shifted into the worst of the horrors. Smock Alley Theatre in Dublin last night witnessed many transformations in her audience, from raucous, joyous laughter to the raw ache of mirroring each others' human suffering. Yes, we wanted to cry out to her, yes! Just exactly that. The soul laid bare quivers, pulls itself taut, appears impenetrable, hard as bone, and as easily shattered as bone.

I breathe. 2004 turns to 2005 and the dissolution of my own mind, cracked wide open by unbearable pain of optic nerve damage, of corneal ulcers, of catatonia until sunset when the painkillers had numbed me enough to descend the stairs and make a cup of tea for my father and myself to discuss death with biscuits. Chocolate cake might mysteriously appear if it had been a particularly brutal day. It took years for the edge to begin to soften.  That's what I call it. The Edge. I can taste it against my teeth. I fear it. And I try not to fear it. My surgeon saw it all and continues to infuse me with optimism inspite of some bleak realities, but my eyes are unpredictable. Which is why, sitting opposite him today, having a relatively gentle procedure felt like small waves of torment. My eye wept for itself, pooling a little river by my chin like the Walrus in Alice in Wonderland ('I weep for you,' the Walrus said, I deeply sympathise... Holding his pocket-handkerchief before his streaming eyes'). 'It's been a while since you've made me cry,' I snarked at Blue Eyes, which actually made me feel much better, because it has been a while. And I have come leagues and travelled miles, and been blessed with new friends, new horizons, glorious humour and extraordinary kindness. And leprechauns. Shur, how can I forget the leprechauns?

We move forwards, ever conscious of the road ahead, gripping on for dear life to any vine of light. We want life.

E. M. Forster teaches us the way forward when he begins Howard's End: 

'Only Connect'.

ICARUS

Pieter Brueghel, Landscape with the Fall of Icarus, 1560s

About suffering they were never wrong, 
The old Masters: how well they understood 
Its human position: how it takes place 
While someone else is eating or opening a window or just walking dully along... 

In Brueghel's Icarus, for instance: how everything turns away 
Quite leisurely from the disaster; the ploughman may 
Have heard the splash, the forsaken cry, 
But for him it was not an important failure; the sun shone 
As it had to on the white legs disappearing into the green 
Water, and the expensive delicate ship that must have seen 
Something amazing, a boy falling out of the sky, 
Had somewhere to get to and sailed calmly on. 

- W. H. Auden, Musée des Beaux Arts 

Twice, in one week, I have come across this poem by Auden. First, it was quoted in the book I am reading - The End of Your Life Book Club by Will Schwalbe, and then today, in an interview with the newly appointed Poet Laureate of the United States, Natasha Trethewey. The poem, she says, helped illuminate her own reality of enduring the grief of her mother's death (shot by her stepfather); an invisible grief, because 'The world was going on about its way while I was over there, this tiny individual suffering what seemed to me a huge loss, what was to me a huge loss. That poem showed me that I wasn't alone in feeling that way'.

For twelve years before starting my blog, I lived an invisible life with lupus. Intense suffering on the wards took place unbeknownst to anyone other than the family stalwarts. So I understand the ploughman's inability to see the 'boy falling out of the sky'. But I understand Icarus too. Last year I was determined would be the year I published my poetry. This year I make no promises. I long to touch the sun but some protective instinct keeps warning me about the fall. Published writers sometimes speak nostalgically about the days when they were anonymous mice, writing for a faceless imaginary reader. The perks of being a wallflower. I may have been a mouse for long enough, but I do love being able to write without pressure or commitment. It is quite delicious.

As are these days unwinding in Singapore and Malaysia with my beautiful sisters. (Of course, being with the brothers is not bad, either :))

Cheong Soo Pieng, Bridging Worlds Exhibition, 1981

Surprised by Joy

"Wie viel ist aufzuleiden!"

- Rilke

In Cairo, Joseph Farquharson

It is howling with wind outside. The bare branches are orchestrating an original work, no doubt in communion with the trees of Cairo, on the Day of Departure. Hosni Mubarak does not seem to hear the orchestrated sounds of revolution, but the wind's force grows stronger regardless. Angelina's flight back to Malaysia has been cancelled 'due to the aircraft being required to perform humanitarian evacuation flights from Cairo'. The wind howls on.

A few weeks ago my brother returned home after visiting a friend, with a book for me. The cover shows a brightly coloured bird sitting on a barbed wire fence, in a concentration camp. The book is Victor E Frankl's 'Man's Search For Meaning', and although I have read and studied Holocaust literature, my instant reaction to it was not dissimilar to a horse, unexpectedly approached. In other words, a high level of anxiety. My mind has been a fragile thing these long weeks of waiting for the consultant to respond to my emails, my basic request for her to view me as more than a case on her desk. She has agreed that I should have the treatment I requested, but on her terms, with twice as many months in between each dose, and at half the usual dose. I am a cost she is cutting. We meet again on the telephone on the 18th of February, when things will be 'reviewed' again.

Pawel Sawicki, photograph, flickr

I determinedly dived into Frankl, because I love my brother, and because I would always rather be brave than cowardly. 50 pages into it, I started to seriously consider the possiblility that I was on the brink of a mental breakdown. For five long minutes I entertained this reality. Then I re-opened the book, and read on. And on page 52, the words 'Et lux in tenebris lucet' - and the light shineth in the darkness. The guards are insulting Frankl as he attempts to dig a trench in the bitter cold of dawn; he is silently conversing with his wife, trying to reason himself out of suffering, when he suddenly has the strong feeling that she is present, she is there... 'Then, at that very moment a bird flew down silently and perched just in front of me, on the heap of soil which I had just dug up from the ditch, and looked steadily at me'.

The night before Rizwan brought me the book, I had written and published a poem on Rilkean anxiety. On page 86, Frankl quotes Rilke himself, "Wie viel ist aufzuleiden! - How much suffering there is to get through!" It surprised me with joy to see the connection. And I have continued to be surprised by joy. The next day as I was printing out a letter to the consultant, an email arrived in my inbox from the editor-in-chief of a medical journal asking me to write a few articles on lupus for an issue of IGI global. And last night Dr Jane Wilson wrote to ask, would I like to be on the radio? Would I like her to speak to the producer of the show about me? Er... yes!! Hey, I think I'm going to be on the radio!! And today, flight cancelled, means an extra day with Angel!

Surprised by joy - impatient as the Wind

I turned to share the transport - Oh! with whom

But Thee...

Love, faithful Love

- Wordsworth

The Irony of Seeing

I have not been sleeping well lately. Actually, most nights I can't or don't know how to fall asleep at all. Long after dawn breaks, I eventually lose consciousness, but I feel as though I have travelled eons in those first hours. I find it almost impossible to unplug myself from the world of Other People's Stories. There are so many faces in my mind, so many voices, strangers for the most part, but for one essential, often tragic or dramatic moment, imprinted on my soul. Do you feel this way? With news streaming and swirling from around the globe, and networking sites, blogs, books, and articles, opinions have opinions and there is so much to concentrate on all the time. So many to pray for, so many to worry for, so many to be glad for. How does one manage to extricate one's mind from today's visually and verbally intense communication? I cannot retreat to a monastery - I already live in seeming solitude. I cannot bring myself to read less - I already read far less than I ever did. Or at least it seems that way, because then, there were 'only' books. Now... 

And it won't subside. How can it? Why should it? This is global awareness. And it is vital. I have to find a way to stay deeply interconnected, without losing my mind entirely to the sea of human suffering, human thought and voice. 

Perhaps it is winter. Perhaps I have not walked in the garden enough. Perhaps I should follow in father's footsteps, and just walk, walk blindly out into that human sea, knowing the grave responsibilities that surround me, but pretending anyway, that I am free. 

I remember now. Faith.

from Gregory Colbert's Ashes and Snow Project