'when you perceive that an act done to another is done to yourself, you have understood the great truth.'

— lao tzu

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.

coming out...

since i posted this piece of writing earlier in the week i've received a few really lovely comments about it, and queries about where it came from - and then subsequent encouragement to 'out myself' as being the author. i decided that i shouldn't wait to see if people were liking what i was writing anyway...that's never been why i write. so there you go, owning up now!

and a small prelude to any future poetry that may find its way here: i usually write when overwhelmed or extremely confused and emotional. it's a way, for me, of working my way through things...when i write i feel like things go straight from heart and head to my hand and the paper. so it's cathartic and therapeutic but doesn't tend to necessarily make for the most uplifting of reading.

inner wisdom

'know that your quest for health is not in vain.

that there is a world of possibility and that the healing powers of the universe are unlimited, infinite.

know also that you are always whole, no matter the state of your health.

and know that every day you are alive you are doing what you were born to do, you are where you were meant to be.

and that the only place you ever need to be is here and now.

do not trouble yourself with concerns for the future, it will be exactly as it is meant to be.

and the most useful thing you can do to create the future you dream of is to commit fully to being where you are.

don't rush yourself.

don't judge yourself too harshly.

how hard you are working to be well is known.

everything you are struggling with is understood.

you are loved and supported always.

and everything in the the universe is conspiring to help you regain your health.'



- anon

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.