art4xmrv

amberlin wu's 'night trees', matt claghorn's 'transparent' and amberlin wu's 'skating into the night'

daniela martins 'hope', and amanda watson-will's 'hope (diptych)'

(and a few of my contributions)

quite a while ago now i promised a little more information about an initiative my friend lee lee developed to raise money for the whittemore peterson institute and research into XMRV (a possible cause of ME/CFS).   above are just a few examples of the artwork which you can buy here.  i've placed a few orders for cards now, and been really impressed with both the quality of printing and the speed of service.  it's such a fantastic way to support research while enjoying the diverse range of talents in the patient community.

when you don't feel like celebrating...

there are particular days that are harder to bear than others - special occasions and anniversaries of any kind can bring up a range of emotions with this illness...they seem to be like markers somehow - signs on the road telling you how little distance you have come in a year. with those days can come grief for what you did not have, what is lost to time...the clock ticking and feeling that your life is going nowhere. these are the days where it is so easy to drown in a pit of despair and longing. and this is how i was feeling today, on my birthday. lost to a sea of churning and overwhelming emotions that were threatening to pull me under...

and then i found myself somewhere, somehow, in a place of peace. even through the unbearable physical pain, and isolation and loneliness i feel connected and supported by my friends and family. by people who i know are caring and thinking of me and wishing, just like i am, that this day (and so many others) could be different. maybe it happened in the moment, born of pure exhaustion, when i finally let go of trying to shape things to my desires for how this day would be - or what i felt i 'should' be doing - and accepted it as it is?

and from that place my gratitude and blessings seemed to multiply. suddenly i became aware of how grateful i was to have a quiet house to rest in, to have the sound of rain on the roof at times or an overcast sky to soothe my eyes. to be able to take these hours in the way that my body needs to right now. to have friends and family who understand that while i really want to take their calls (or to see them) i am quite likely not going to be able to - and give me the power to make the right decisions for my body about those things. feeling so blessed to have people in my life showing me in different ways that they are sensitive to how i am feeling about this day.

i was able to focus on the progress i have made in this year; the new expressions of creativity, new connections and friends, new possibilities for treatment. the ways i can, and do, continue to grow and learn in spite of all that is happening physically. there are so many different things that have happened in this year that i treasure and hold so close to my heart. it's a journey...not an easy one, and certainly one noone would chose of their own volition, but one that has its own rewards. and they are plentiful and priceless.

and then a bonus - the best kind of news i could possibly hope for: i discover an article explaining that there are really promising stage 1 trials going on with an antiviral drug for XMRV. that this drug seems far less toxic than many others and much more potent against the retrovirus that may well be responsible for all this suffering. couldn't have asked for a better birthday present than another good dose of hope! that, and the people in my life who love me, they get me through these days and show me the silver lining peeking through.

child of mine

i can feel you slipping away...even though you were never there.

i can feel you tearing my heart as you pull away.



no lifechanging moment of realising i had joined with someone to create another being

no precious months of being more than whole as i felt you grow

no birthing you into this world and feeling you leave/feeling you come

no holding you in my arms completely overcome by wonder and something more than love

no watching you grow too quickly to hold every moment, to sear
every second into my memory

no seeing you change and seeing you dream and shape your world with your hopes and desires.



none of this, none of this was ever there to lose.

yet all of this i feel slipping away, all of this I see leaving as I fall

onto my knees and crying out for the you that is never going to be.




(know a lot of people have seen this in various places but it seemed the right one to start with seeing it was a subject that's come up with two friends today...one of my contributions to the creative for a second or two project, although not written in the two weeks i had the journal. this one is for you 'a' and 'b'...you know who you are. XXOO)

wise words

the invitation


'it doesn't interest me what you do for a living
i want to know what you ache for
and if you dare to dream of meeting your heart's longing.


it doesn't interest me how old you are.
i want to know if you will risk looking like a fool
for love
for your dream
for the adventure of being alive.

it doesn't interest me what planets are squaring your moon...
i want to know if you have touched the centre of your own sorrow
if you have been opened by life's betrayals
or have become shriveled and closed from fear of further pain.

i want to know if you can sit with pain
mine or your own
without moving to hide it
or fade it
or fix it.

i want to know if you can be with joy
mine or your own
if you can dance with wildness
and let the ecstasy fill you to the tips of your fingers and toes
without cautioning us to
be careful
be realistic
to remember the limitations of being human.

it doesn't interest me if the story you are telling me is true.
i want to know if you can disappoint another
to be true to yourself.
if you can hear the accusation of betrayal
and not betray your own soul.
if you can be faithless
and therefore trustworthy.

i want to know if you can see beauty
even when it is not pretty
every day.
and if you can source your own life from its presence.

i want to know if you can live with failure
yours or mine
and still stand on the edge of the lake
and shout to the silver of the full moon,
'yes!'

it doesn't interest me
to know where you live or how much money you have.
i want to know if you can get up
after the night of grief and despair
weary and bruised to the bone
and do what needs to be done
to feed the children.

it doesn't interest me who you know
or how you came to be here.
i want to know if you will stand
in the centre of the fire
with me
and not shrink back.

it doesn't interest me where or what or with whom
you have studies
i want to know what sustains you
from the inside
when all else falls away.

i want to know if you can be alone with yourself
and if you truly like the company you keep
in the empty moments.'


- oriah mountain dreamer

while on the subject of snails

in the last couple of months i've discovered two very special books that are simply too good not to share (although i'm tempted to buy them for all and sundry and will now be giving my 'secrets' away).

the first of these is a little gem called 'the sound of a wild snail eating' by elizabeth tova bailey. right from the moment you see the cover and the layout you're sure that this is something special. and, luckily, the words inside live up to expectations. attempting to do justice in describing this story is no easy task...i almost feel that it's something which should be left to each reader to explore as untouched. so i'll keep my explanation as brief as possible, hopefully just enough to entice you too to want to read.

put simply, it's a tale about a woman bedridden with severe ME/CFS who 'adopts' (involuntarily) a snail. it might not sound exactly riveting but is actually incredibly interesting and the writing is so beautiful you want to take it slowly - at a snail's pace? - and savour every word. each sentence is so exquisitely sculpted that it feels like a meditation to read. without dwelling overly upon her illness bailey nonetheless manages to gently shed light on just how serious ME/CFS can be. the emphasis, however, is very much upon the snail - drawing you in to the world of another slow creature and revealing just how much we can learn by pure observation. who knew that gastropods had such fascinating lives?

when i read this the first time i was going through a particularly tough patch, back to spending most of my days in a darkened room and struggling to deal with any sensory stimulation whatsoever. somehow as i read i felt more at peace and soothed. i would smile to myself as i delighted in another small morsel, sharing the obvious joy shining through the pages and luxuriating in the beauty of the writing. i could feel the snail working its magic on me too through bailey's words.

happy anniversary?

a year ago today a landmark study linking CFS and the retrovirus XMRV (xenotropic; murine leukemia virus; related; virus) was first published in the prestigious journal 'science'.

a year ago today i didn't actually know what a retrovirus was. a year ago the idea of testing positive to an illness which counts AIDS and leukemia among its unenviable retrovirus companions would have been horrifying and terrifying. it still is, in many ways, but somehow the possibility of testing negative in the face of a new frontier of hope is scarier still. the devil and the deep blue sea...

so, a year on, what has changed? politics and egos appear to have gone into overdrive - but how much closer are we to answers? to the elusive cure? only time will tell. meanwhile patients are being led on an emotional roller-coaster ride, and the clock is still ticking away.

it makes me something far beyond angry to hear people in power playing politics with this, while millions of us lose more and more of our lives and continue to suffer. while the thought of others being exposed to XMRV in the meantime and potentially going on to develop this devastating illness makes my blood boil. this is not an issue that is just about the ME/CFS community, this is about everyone - XMRV has also been found in the general (healthy) population, blood supplies are not being screened for it at this stage and methods of transmission are yet to be fully understood. we all need answers so that we can make informed decisions. we need the scientific process to be able to evolve unhindered by government and personal agendas - to show what really lies beneath. and, if XMRV happens to turn out not to be as significant as many suspect, then we need to know this and move on.

i want the 'games' to stop. i want my life back. i want everyone with this illness to be able to enjoy a healthy body, to be able to live their dreams. and i don't want one more person on earth to have to live like this.



(i wonder where we'll be one year from today?)

here comes the rain

this was going to be a place of pure positivity, but i'm starting to realise how unrealistic that is...would you even see the sunshine if you didn't know about shadows and clouds and rain?

although you can choose to 'turn your face to the sun' you still know there are clouds behind you. sometimes you try to ignore them and they just build and build until they are dark ominous stormclouds pulling you backward with their force and draining your energy, gathering momentum and demanding your attention. i think it's better to turn around every now and again and look them in the eye.

there are clouds with all sorts of shapes lurking behind me at the moment...some are XMRV shaped, some have the faces of all the politic-ing people who seem to be hampering scientific progress etched into them. some are full to overflowing with the lack of understanding and sensitivity i still find after all these years - sometimes in the most unexpected places. others still are there all the time, in one form or another, mirroring the ever-present grief born of loss that apparently knows no end. and just right now clusters are gathering unbidden as anniversaries draw near...

i respect their right to be there; they are a natural reaction to the challenges of this journey.

i know that i can't stare down these clouds or simply will them to magically disappear (if only!). but i can lie down on the metaphorical grass and look upward, feel the ground beneath my body in this present moment, and watch - with as little attachment as possible - until they eventually float on past through the expanse of sky.

bedtime stories (and a survey)

the most delightful little book arrived over the seas from ireland a few weeks ago now - discovered in a roundabout way through author corina's beautiful website. i was initially blown away by her photography and then discovered she'd written a book (actually she's written two) called cirrus chronicles, which sounded so much fun that i just had to order a copy. yet to finish the book...am savouring the lovely story, and also the nostalgia of being read to again.

on a related note, corina is currently doing a bit of research into how the net and social networking sites etc impact on the experience of ME/CFS. she was hoping for feedback by the end of the month so not much time left now. however if you'd like to help out you can find the post about this on her blog. i certainly found it really interesting to reflect on the ways in which all this technology helps (and hinders) me.

a recent visitor

last month i spent a couple of weeks in the company of journal # 6 (shown here soaking up the queensland winter sun) as part of the very talented kirrily anderson's 'creative for a second or two' project...this follows on from the publication of the 'creative for a second' book a couple of years ago.

the 'second or two' version is a worldwide collaborative arts project specifically for people with ME/CFS, the idea being that each person has two weeks with one of the journals (there are currently seven) and then sends it on to the next person on the list. reading through the book that has already been published i was amazed at the creativity that exists within our community. and taking part in this project, while highly stressful (totally self-induced) for a perfectionist like me was also really interesting and rewarding. since i passed the journal on i've been able to follow what other people have been doing on the facebook page - and loved the sense of shared experience, support, understanding and enthusiastic encouragement i see every time i go back to see what is new. none of us would ever choose to be connected by this illness that binds us all but it's a lovely group of people to be bound to!

who knows what today is?

(anyone who's been near my facebook page this week should be in no doubt!)