Crocuses

My father knows when
the crocuses are out

and when the snowdrops
and when the bluebells

and how to listen, carefully,
to the nesting birds,
trilling
between our rooms.

Daisies will come
and roses will grow

and perhaps we shall walk
and reminisce about the snow

and kick up some leaves
and weave up some dreams

while the world passes by
my father and I.


artwork: Father's painting of Crocuses, Spring '66

I Wish I Knew How

One of the refrains of my life's soundtracks... the legend that is Nina Simone, the song that says it best for so much of our sorrow and joy. "Jonathan Livingston Seagull ain't got nothin' on me"... When Nina was asked what freedom meant to her, she said "No fear. If I could feel no fear for even half my life, wouldn't that be something?" That's what freedom means to me too. No fear. Wouldn't that be something?

A Brief Meeting

Names come and go

on the wards

Only an impression lingers

long after

cheery farewells, and

"Hope to never see you back here's!"

Katrina, nurse from Belfast,

remembers me from university

Dolly, blithe spirit

"Would you believe I'm 90?"

Louise with the rare cancer

talking, without a voice box

Edna, Joan, Quiet Ann,

Women, their lives unplanned

for days like these

Days that erase

their femininity.

~~~~~~~~~~~

I am typing this from my bed at home. I have been released for now until funding can be processed for experimental monoclonal antibody therapy.

There are trees around me again! Birdsong! Fresh fruit! And all your good kind wishes that have brought me home xx

art: The Two Fridas, 1939

Exuberance

I have had high fevers and night sweats
My fingers and toes flush cold and heat
and transform
into purple flowers -
My face, that transient thing,
smiles radiantly
A sweet moon
in a thunder cloud sky.

Lupus, you odd unnatural thing
I am raising you
to the ground.

Here, on the ward,
I am laughing,
I am offering
my exuberant soul

Take it
if you dare.


Dear Blog Readers, I have been admitted into hospital again. My brother has very kindly brought his laptop to me so I am posting up my latest poem. I wrote it last night when all the lights were switched off, and all the other patients were fast asleep. I am the youngest on the ward as usual, and all the elderly ladies are kind and friendly to me. All the same, I shall be glad when I can escape and see green trees and blue skies again.

The Celebration

I arrived to conquer

every dream

and mystery
and plan;

This life

of fierce glories

has been

No ordinary Life.

Find me here

at every feast

in all the happy times;

Look up! and smile

and raise a glass

of fine beer or wine.

Store up the jokes

and anecdotes

for when we meet

around the corner

I will be listening

for your laughter.

In memory of Arif Tayabali, beloved family member, who passed away a year ago today. This is the poem I wrote and recited at his funeral.

Arif epitomised cool. Style and kindness radiated from his very being. Meet him but once, and never forget him. We are the lucky ones, who knew him, loved him, remember him in our yesterdays, our todays, our always.

(photo of Father on left, Arif on right. Father's paintings in the background.)

Love is...

... born when babies cry, pearls of joy as the angels sigh
... the fountain of youth, silvery innocence of restless truth
... sunlight glinting on birch, shining white tree with radiant mirth
... harmony of night and day, in separate orbits with equal sway
... the strength within, perched on the outside looking in

... a secret of whispers and looks
the essence of which none capture in books
the essential experience none can compare
a shy revelation can leave the heart bare

... in the heart of the adopted ones, for they are the chosen daughters and sons
... in the eyes of the blind, for they make no judgement of colour or kind
... in the outstretched hand, which gives unasked to the poorer man
... in the very first kiss, soft, trembling, eternal bliss
... an echo over thousands of miles, a phonecall, a letter, to bridge ocean and sky
... in life's precious breath, which leaves man suspended between eternity and death

... a prayer in war and in peace
... a language, save the soul can speak

... so simple. So pure. So true.

Love.

Love is ... you.


valentine, 1997

Dances With Wolves

I am a Leo by star sign. I was born in the Year of the Horse.
But these symbolic animals mean little to me.

The animal that haunts my life, through day and night, is the Wolf.

I had never heard of the disease Lupus when I was diagnosed with it at 18. The doctor who delivered the news to my parents and myself, did so cheerily. He told me I had a mild form of the disease and I would probably never even notice it. He prescribed hydroxychloroquine, told me to go away on holiday, and with another cheery wave, stepped neatly out of my life. Lupus, which is Latin for Wolf, is only part of the disease's name. It is actually called Systemic Lupus Erythematosus. Systemic because the disease affects a patient anywhere, everywhere. And erythematosus, derived from Greek for 'red' referring to the vascular effects: the butterfly rash across the cheeks, which can scar, as it has done in the case of the singer Seal.

Quinine, which was prescribed so enthusiastically by my very first doctor, was 'discovered' for Lupus in 1894. Since then, there has been another new 'discovery' in the 1960s in the form of steroids. Since then, nothing. Nada. Just the horrors of drugs poached from other conditions like cancer (Methotrexate) and transplant therapy (Cyclosporine). Fifty years, and this illness, so romantically symbolised by the wildness of a Wolf and the tenderness of a Butterfly, eats away at women all over the world. It is never mild. It is never forgotten.

Flannery O'Connor, the Southern American novelist, died on 3 August, 1964 at the age of 39. She painted her own self-portrait through her letters, and was writing right up until her death from Lupus. She hated the disease as you can imagine because it interfered with her writing.

8 March, 1964

Me, I just got out of the hospital where I had my middle entered by the surgeons. It was all a howling success from their point of view and one of them is going to write it up for a doctor magazine as you usually don't cut folks with lupus.
8 June, 1964

I am still here - into the 3rd week. I had a transfusion Sareday & another Sunday. I don't get any information out of them that I particularly understand but then I'd have to study medicine if I wanted to keep up with myself. I don't know if I'm making progress or if there's any to be made. Let's hope they are learning something anyhow.

16 June, 1964

I asked [the doctor] today when I could go home. Well, he says, we can begin to think about it now. Well, you begin, says I, I been thinking about it all the time. So we are beginning to think about it.

24 June, 1964

I've had four blood transfusions in the last month. The trouble is mostly kidneys - they don't refine poisons out of the proteins & therefore you don't make blood like you should or you lose it like you shouldn't or something. As far as I am concerned, as long as I can get at that typewriter, I have enough. They expect me to improve, or so they say. I expect anything that happens...

O'Connor is not the most sympathetic of writers. Have you read her? There is an alarmingly grotesque nature to her fictional characters, but in her letters I find the echo of my own voice, the frustrations of my own limitations and worst of all the sheer ignorance and lassitude of 50 years of no new treatment.

quotes from 'Letters of Flannery O'Connor: The Habit of Being' ed. Sally Fitzgerald

Transformation

My face
a transient thing
breaking up
and taking shape;

In moments
of perfect beauty
my face
reveals
its grace.

In Memoriam of Friends Gone By

I am not stopping here

for long

Between winter and fall

I'll be gone

Perhaps we will meet

when

spring leaves bloom

Or, not at all.