Tuesday, December 14, 2010

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.


  1. sounds like you have a lot of great stuffthis year to be thankful for :) And we are thankful for you!!! It's been great gettingto know you online recently :) xx

  2. My dear pumpkin I have been thinking of you all day. I am so glad to read this. it means my sweet friend is feeling better. I am grateful for that. What a wonderful birthday present, hope.

    p.s you are always in my heart. xxxx

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  4. beautiful. SO important to know we all have those lost moments and then those found moments. Hope comes and goes. But its good to try and keep on hoping for hope, if that makes sense. Happy birthday, xxxooo


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