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)

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?)