One Stormy Night

I am hearing laughter
before the fall of rain

I am hoping for peace
before it storms again

O Restless Night, be still
so I may transcend pain.

Today I heard about a storm outside Plum Village, the beautiful retreat in France where Vietnamese Zen master Thich Nhat Hanh lives.
Here is a clip of his teaching on mindfulness in his own words. Listen for a few minutes if you can, for peace in your storm.

The Shadow and the Mirror

Midnight unveils my secrets
In some dark forgotten corner
a little light persists

Time does help me emerge
Re-invent my faded self
till the tip glows
with the root's strength

This is beyond sleep
this living out my dreams
When no-one else can
see or hear
Except the shadow and the mirror.

april 1999

Bound Feet

Xin xin ran zhang kai le yan
- Zhu Ziquing

(With pleasure, Nature opened its eyes, to new things)

Today is Chinese New Year, the Year of the Ox, and Vietnamese Tet, Year of the Water Buffalo. I am listening to an audiobook of Jung Chang's 'Wild Swans: Three Daughters of China' and feeling so aware of freedom of speech. The blogosphere is proof of the freedom of lively conversation and cultural debates, sharing of opinions and images and historical moments. It is good to take a moment to appreciate the wonder of our unburned books and individuality.
Here is the section I am currently reading:

"My parents were under permanent orders to stay at home and wait to be summoned to the next meeting. Going into hiding was out of the question. The whole of China was like a prison. Every house, every street was watched by the people themselves. In this vast land, there was nowhere anyone could hide. My parents could not go out for relaxation either. 'Relaxation' had become an obsolete concept: books, paintings, musical instruments, sports, cards, chess, teahouses, bars - all had disappeared. The parks were desolate, vandalized wastelands in which the flowers and the grass had been uprooted and the tame birds and goldfish killed. Films, plays, and concerts had been banned...We hardly even thought of going out for a walk."

If you click on the link above (on Jung Chang's name) it will lead you to the BBC Woman's Hour radio broadcast with the author talking about coming to England, Mao, and trying to be a writer despite the Cultural Revolution. She is enchanting. Another extraordinary book I discovered some years ago is Xinran's 'The Good Women of China'. It is a collection of stories recorded by a brave radio presenter, of even braver Chinese women, some of whom have never left my memory. If you have read anything that left a particularly vivid impression, do let me know.

So, Happy New Year again to us all. I will eat my orange one segment at a time, and 'open my eyes to new things'.

Meditation

(I live in a small English village. It is so quiet that when we first arrived from Bombay, the silence was deeply painful. The sound of a train miles away logged the hours for me. And, on Friday evenings, church bells ringing reminded me to breathe.)

Rust in bloom
against the pale sky
It is softly raining
outside the window of my mind
And church bells
Offer an interlude;

I can smell the rain
in a stream of wind and birdsong
And church bells
Glorify the hour -

I am reading.


mar 1999

Believing is Seeing

Some years ago, my father lost his sight. He is a doctor by profession and was a painter by choice. He chose to paint in order to impress my mother who is an artist by profession. Or so the story goes. I think he was painting long before he picked up the paintbrush.
Today he played his first game of bridge in 40 years, and for the first time without sight. His courage and insouciance in the face of challenge are a daily gift to those who encounter him. He no longer needs the paintbrush; this is the artistry of life.

I Bear Witness

Softly, darkness falls
I step into the aching void
of night,
heavy with the memory
of day.
Walls that hear
each careful grudge,
doors that slide
on careless lies,
appear opaque;
but ugliness is never hid
nor sweet deceit concealed.

Truth makes roots in porous soil
and concrete blocks seem planks
that pave a way for falsehood;
The fiery orb
we believe is the sun
may rise slowly
to reveal the moon.

I bear witness
to silence and secrets
unguarded yet furtive;
The warmth of the lap
my head rests on
may tomorrow
turn cold as stone.

Trust no thing
that time may touch
Love all things
that time may not.

july 2002

Moon over cloud,
pale grey shadow
cradled by softness
of daylight and moonlight;

A blue calm that settles
between colour and silence,
I am home.

feb 1999

Here Comes the Sun

Young and gifted every morning, here comes the Sun
and even when it rains
We make music in different ways, in silence
and even with silence
I am the love I make, the world I create
and even when I change

Everything that is something, starts slowly
even nothing
I have what I want
even the traps, the pain

With a single touch I can make you mine
even if only for a second
I can catch your eye, I can make you smile
and even if we never meet again
life was good then.

Spirit (On the Day of Inauguration)

High above
in clouds of foam
the Spirit forms
itself.
These dreams of ours
that billow forth
hope upon hope
while death below
in shrouds and veils
pours pain
into the human race.
Who we are
is best forgot
and lost within
the sands of time
Until perchance
we find ourselves
once more
in the Spirit Land.

Lone Soul

(watercolour by Mujtaba Tayabali www.tayabali.com/art)

There's something out there

moving slowly with the clouds
and softly with the breeze

I am transported suddenly
as though I have discovered
my buried self.

Traffic Jam

1.

And here where the cars meet and wait

and people's eyes greet, and speak their thoughts

I am at the turning point.

The cold air chills me slowly;

I am listening carefully to my companion

Who is everywhere that I am

And sometimes a different form.

2.

Glazed behind the window of my mind

I am watching from the tunnel

where the rain falls

and the earth smells free;

I am watching from the traffic

feeling sky and

seeking calm.

Here and there the birds fly

reminding me

this is temporary.

3.

And all along I know this life

Her tomorrows are no sweeter than today

What she wills is that we will

that sweetness come our way.

feb 1999

J.L.Seagull

To Be
Like Jonathan Livingston Seagull
Is To Fly
Out Of One Moment And Into The Next
At The Speed Of Thought.

Lying in a hospital bed
I dream of the impossible
Surgery veiled my eyes
and left me blind

to the possibilities -
Now I can see again
I can be again;

To Be
One Has To Live On A Prayer
The Speed Of Thought
And You Are There.

jan 1999
Ten years ago to this day I had my second trabeculectomy, a common invasive glaucoma surgery. It was performed as a result of the high, intensive, intravenous doses of steroids that appear to be the first and last all-important treatment for lupus.
Ten years on, I am living free of steroids by personal choice. I still have glaucoma and one of the trabeculectomies has failed, and had to be replaced by a Molteno implant, a very clever device inserted by an even cleverer surgeon (a very attractive Irishman as luck would have it!).
I am still hoping to turn into a bird but the speed of thought has brought me here, to you, and for that I am grateful.

for my Someday Sister, Katie Down

if i may allow myself one brief moment of self-pity
here am i awash with doubt
i look upon the beautiful ones who make me cry
into the sea of injustice
and i have made myself a prisoner tonight

i clutch at freedom but it laughs at me
and slips away
into the particles of light i cannot see

have i not walked the sacred path?
have i not been bathed in love?
have i not talked and danced with angels?
then
am i not beautiful?

if i allow myself another moment of self-pity
i am a fool...

P.O.W.

Yesterday was the promised land
Where the body found strength and the soul danced
There was peace in a moment
Quiet at the breakfast table.

Then the sun bathed itself in twilight
The colours changed
And with the moon the battle resumed.

Here is another morning.

I am unarmed.

The battle has begun.

I never fought, I was simply captured
And now I await my orders
Whilst another day of stolen magic
lies winking in the promise
of tomorrow.

jan 1999

The Magician and the Rose (Illusions)

Find me a rose
and I will sell you a dream
and I will cry you my river
if you listen patiently
Wait by the rainbow
and my secrets are yours;
keep me a promise
and I will share some magic
to learn your ways
for you are the teacher
of truths.

jan 1999

Silver Threads and Golden Pens

Silver threads and golden pens
You never can tell
Just around the corner
there's a spell
waiting to be cast
A web waiting to be woven
around you.

You can be unafraid
but never untouched
Tomorrow you're the storyteller
when it happens to you too.

And there will always be
Silver threads and golden pens
For life will never be quite the same
As you fall and rise
To meet time again.

dec 31 1998

In the Morning

- Nina Simone (1967)

In the morning when the moon is at its rest
You will find me at the time I love the best
Watching rainbows play on sunlight
pools of water, ice-cream cold nights
in the morning
Can't you imagine it?
It's the morning of my life.

In the daytime I will meet you as before
You will find me waiting by the ocean floor
Building castles in the shifting sands
in a world nobody understands
In the morning
is the morning of my life.

In the morning of my life
Minutes take so long to drift away
Please be patient with your life
It's only morning and you've still to live your day.

In the evening I will fly you to the moon
To the top right hand corner of the ceiling in my room
And there we'll stay till the sun shines
Another day
play on clothes lines
And I'll be yawnin'
'Tis the mornin' of my life

Morning of my life.

How Do I 'Treat' My Lupus?

Since I started this blog some people have been kind enough to leave insightful comments and inspiring responses. A recent comment from a fellow lupus blogger included the title question, "How do you 'treat' your lupus" and I thought I would answer directly on my blog.

Anyone with lupus knows about the symbolism of the Wolf and the Butterfly. Picture it: one has all the intense passionate beauty of a powerful wild animal, a survivor of the ice age, and the other is an ephemeral winged insect, known for its larval caterpillar form, inactive pupal stage and finally its breath-taking metamorphosis. Treating lupus is a matter of balancing the outrageous suffering and howling with a lighter touch achieved any way you can. I do it through writing, laughing, praying, gardening... healing. Healing is everything. And fearlessness. All I have ever wanted since I was diagnosed is to be fearless. Not stupidly fearless, but consciously fearless. In full awareness of yourself, anything is possible.

My two top ways of treating lupus this month are:

• Acupuncture Several years ago my mother (who has always been on the lookout for ways to get her daughter better) discovered a Vietnamese acupuncturist who is also a gynaecologist, and practising Buddhist. Her skill with acupuncture however did not lead her to predict a cure for me. She demanded patience on my part, and described my lupus as a ball of wool, all tangled up; unravelling me has certainly demanded patience on her part too. Patience and persistence are necessary with this condition! I would wholeheartedly recommend acupuncture and wish you luck in finding someone as superb as my own Dr Ly.


• Audiobooks A few years ago when my father lost his sight around the same time as I had a very clever operation to save mine, we realised audiobooks were the way forward. Lucky for us we have a brilliant library system in operation here in Cambridge. Audiobooks are expensive so locate your nearest library. Listening to audiobooks means resting your eyes and your body, two impossibly hard things to do when life is waiting to be lived. On a bad day, have an audiobook at hand. Here's what I am loving today:

Further Under the Duvet Marian Keyes, Irish writer and general all round fabulous woman, herself has experienced the hells of a chronic illness, in her case alcoholism. Her books are insightful, charming and hilarious. Go on, treat yourself!

Lupus in Flight

Lupus in flight
on a hot and burning night
Would I were the cool breeze
the intangible dream
gliding in and out of sight.

I am a dream weaver
and hope trader
for better times
and wiser minds.

This body cannot be all I mean
This life cannot be all she seems
And moonlight gleams so far away
And snow falls on some other's way.

The trains are constant
as time is not
And tomorrow's tidings remain unknown
But birds will sing and love will grow.

nov 1998

Wolf Bite

Poison
burning in my toes
exploding on my face
red blows
Still am I accosted
by the unexpected
bite of the Wolf.

nov 1998

Trabeculectomy I & II, War in Iraq

There is a war beginning
and bombs exploding
just beyond the fragile nests
of our lives
and pain is exploding
in sharp bursts and gusts
and I am free to feel fear
but I will not.

dec 1998

Steroids

the flush creeps on
a year later
hot discomfort
inside my veins
the flush confused me once
disguised as fear
I recognise it now
I understand it well today
the sunshine
of my blood.


Life in my little room
curtains drawn on harsh light
and behind it the birds sing.
Every day my hair falls
and piles beside me on the bed
Every other day my toes inflame
and confine me to bed again;
Still the birds sing.


I still wait and watch for your arrival
even though I know you will not come
Cars pass and the light fades
and still you do not call.

sept 1998

Love trap

Glorious sunlight
escapes into a trapped world
and frees the soul
Glinting between the green
and masking the grey
Smiling and dancing its way
past worry and pain
into the heart
where it nestles
warm
and deep as love.

sept 1998

The Hourglass

Love is a waterfall
inspired by the rain;
I am loving you
in an hourglass
praying for time,
and behind the sliding doors
you capture my heart.

july 1998

The Healer

(on the way to the healer)
Travelling,
imagining I am leaving it all behind
these fields of rape seed, lined up in rude yellow
hot against a watery sky
past the industrial sites,
and rolling into the green;

Still driving on and getting lost
Funny that I can't lose myself
Dragging this ball and chain around
Waiting for this flare to die down.


(a healing)
Laughter giggled in me
and love surged forward
in an explosion
of tingling feet and heated hands
sounds of wind and waves on land;

A rush of emotion
and my heart threatened to break
with dreams spiralling
and earth quaking
to the rhythm of the image maker.

june 1998

Stone Wolf

I saw a wolf today, carved in stone
He was greying around the ears,
but his eyes were sharp and his lips were curved;
Head cocked, listening to the wind,
I won't forget him.

scotsdale
may 1998

The Daisy Chain Poems

1.

Sun baked daisies today

and a pheasant streaks colour in spring

Nearly summer today

and sun and wind are married

in perfect changing harmony.

Shadow cast upon forget-me-nots

blue shade amongst the hyacinths

and forever twitterings in unknown places

carved into cherry and beech.

Cheeky day to keep my lonliness at bay

Airplane roars across the sky

and neighbour's dog responds

barking

and leaping for joy.

Simple ecstasies

in red yellow green and blue

The clock is ticking towards homecoming

I'm missing you...

29 april 1998

2.

Summer breezes through the daisy chain

Ants race between my toes

and the world is a playground

of friendly sun

on a sweet pain free day.

9 april 1998

3.

Pain free hours

sandwiched between the pain -

I am collecting these everyday.

Treats of sunshine and icecream

and a sprinkling of rain.

Beyond the rooftops

a sinking pink

blushing behind the wood

and in the distance the train track

rumbling echoing heaving

beneath its load.

10 april 1998

The Diary of a Lupie

long lonely dreary hours
stare insistently at me
I am running
chasing my own tail
tonight the Wolf is laughing at me

I am talking to deaf walls
straining for a reply
Only silence and madness accost me
I am sending rockets of thought
into the unknown quantity of night
knowing I will never be heard

these are the frustrations
from the diary of a lupie
struggling to make sense
of making sense at senseless times
when the questioning runs deep
but the listeners are asleep.

18 april 1998

Today

is the first day of a new phase
I am awake in sunlight and unafraid
I can hear the birds singing
and everywhere is golden and green
and smells clean just for me.

Today
I am wearing a watch for the first time
in a long time
though I don't care what time it is
I only know the light is alive and real
and that is enough for me.

Today
is smiles and laughter and absorption
in the billion things to do
like read a chapter or four
from a dozen books or more
and cast a careless glance
at the mess upon the floor
trek in time through the picture gallery
and hope secretly he'll call me.

1 feb 1998

Time

Time
creeps into decrepit corners to sulk
to brood amongst the weary hours
that escape me
tempting normality
that escapes me
daylight escapes me.

Time
exhausts me with imaginary purpose
seduces me with dreams that unfold
only to escape me
the cycle is haunting me
tainted with despair
that melts into hope
only to escape me.

Time
isolates me in the prison of my mind
I am vapour floating in the cell
aimlessly
until time traps me
only to escape me.

28 jan 1998

Balancing Act

I am sure only of the immediate.
Nothing is solid beneath my feet.
Perhaps it never has been.
Always the observer
but never more so than now;
I am in between everything
watching listening waiting,
always waiting,
and then the moment is upon me
and I am startled unawares.

I nearly tumble off the brink
till something magical winks at me
and I am caught
in a painfree moment.

15 jan 1998

On New Year's Eve

A cold is a cold is a cold
But not when you have Lupus
It is a beautiful day outside
Golden and silver lights on a breeze,
A breeze I cannot feel
A natural beauty beyond me
Trapped as I am in pain;
No painful oblivion am I accorded
No heady drugged state do I lie in
No, I am aware of everything
Although I begin
to feel the collapse of sense -
I am struggling with pounding heart
and shaking hand
and aching back and legs
and outside the faint song of bird
and rumble of train
and tapping of spoon against cereal bowl,
I hear it all
and sometimes see nothing at all
in the darkened room
As the world rushes by
and life is lived on
New Year's Eve.

31 dec 1997

Drugged

Semi darkness; semi conscious
I am writing to know this is real
While it howls and it spits outside
Inside is my own storm
Mental madness; mental sadness

I have no immunity
I have an illness
called Lupus.

Sometimes I think I'm imagining it all
that the pain is a figment
the distress my creation
that I'm a fake and a phony
and if I'm not careful
they'll call my bluff -
or is that only wishful thinking?

I laugh in the face of pain
till it laughs right back
in the middle of the night
throbbing in my head, stabbing in my legs
and screwing with my brain

I am in pain
I have an illness
called Lupus.

27 dec 1997

Empty slate

stares back at me expectantly
Hungry slate
has waited patiently...

There is much to say
in a tangled web
Inside
energy burns
with a slow glow
Invisible
to the living world.

I have my own world
a castle built in pain
I am my only prisoner
trapped within the grains
I watch the sand slide
and the sun set
on each tomorrow
I hear the sounds of living
and the pressure
to keep moving
and I step out of the crowd
to hide my sorrow
while the axe grinds
and the clock chimes

but who am I
with the pounding heart
and the tired eyes?

I am
the darkness in the light
clouded in fear
the coward the victim
I am
the shining star
the smiling power
the lover the vision
I control the destiny
that controls me,

I am the pain
and I am the cure
Now
bother me no more -

dec 1997

Dear Reader

When I was 18 I was diagnosed with an illness called Lupus. I began to chart the journey in poetry, filling many journals, always imagining the experience would eventually curve into a neat end, and the whole could be shared with others. I am 30 now and rather than ending, there are only beginnings and growth and life continued. Lupus continued.

So this is an experiment and an invitation to you to share the journey. Join me anywhere, in light or shadow, and you will have joined me then and now.

Shaista