Saturday, October 13, 2012


I'm feeling piss poor physically so I'm not sure how this post will turn out. It's been good for me to be offline (for the most part)  this past week if for nothing else than to start to get a little more centered again. I  reflected on why my birthday was so difficult. As I reflected in the back of my mind I could hear the lyrics to the theme song from the movie Mahogany:

Do you know where you're going to?
Do you like the things that life is showing you
Where are you going to?
Do you know...?

Do you get
What you're hoping for
When you look behind you
There's no open door
What are you hoping for?
Do you know...?

On my birthday my response to the questions posed by this song was a resounding "No! I don't like where I'm going to! I didn't get what I hoped for!" I didn't know that I wanted to continue living with the limitations and purgatory nature of this disease. So it was time for me to make a decision-either s**t or get off the pot.

I know that the rest of my journey here on earth will be a difficult one. There will be joy as well but one  question I stared down on my birthday was 'do I have what it takes to live like this?'.

By "this" I mean living with this disease and all it entails. It means looking at the fact that I will probably never be in a relationship again, that I will continue to struggle with issues of isolation, that on some days simply waking up will be the most courageous act I can do, that I won't get to live in the city I want, that I will be poor, and that most of the time, until we get better treatments, I'll spend 99% of my time in pain and not feeling good (pain is now part of my daily experience).

I thought of my family and my precious nephew and niece, my kitty, my relatives, and all the potential for joy, for developing wonderful friendships in the ME/CFS community, and for the opportunity to be able to give back. I realized that even though life will be difficult I can still make something of it. I can find a way to give back (I even have some ideas). I realized its time to step fully into my life and figure out how to make the best of it. It's' not the life I had dreamed of for myself but its the only one I have. It's time to accept it as it is in all of its difficulties.

I was listening to one of my favorite poets (David Whyte) and was reminded of this poem:

Revelation Must Be Terrible

Revelation must be
   terrible with no time left
to say goodbye.

Imagine that moment
   staring at the still waters
with only the brief tremor

of your body to say
   you are leaving everything
and everyone you know behind.
Being far from home is hard, but you know,
   at least we are exiled together.

When you open your eyes to the world
you are on your own for
   the first time. No one is
even interested in saving you now

and the world steps in
   to test the calm fluidity of your body
from moment to moment

as if it believed you could join
   its vibrant dance
of fire and calmness and final stillness.

As if you were meant to be exactly
   where you are, as if
like the dark branch of a desert river

you could flow on without a speck
   of guilt and everything
everywhere would still be just as it should be.

As if your place in the world mattered
   and the world could
neither speak nor hear the fullness of

its own bitter and beautiful cry
   without the deep well
of your body resonating in the echo.

Knowing that it takes only
   that one, terrible
word to make the circle complete,

revelation must be terrible
   knowing you can
never hide your voice again.

  -- David Whyte
      from Fire in the Earth
      ©1992 Many Rivers Press

"No matter how far you are from yourself, no matter how exiled you feel from your contribution to the rest of the world; as a human being all you have to do is enumerate exactly the way you don’t feel at home in the world, say exactly how you don’t belong, and the moment you’ve uttered the exact dimensionality of your exile, you’re already taking the path back to the way - back to the place - you should be. You’re already on your way home."

"All that you have to do, actually, is enunciate the exact nature of your exile.” And that will open up your door to your conversation because there is no one else in the world that feels exiled in the way that you do. There is no one else who can feel far away from things with exactly the same coloration and tonality that you do. And therefore you must have faith in whatever you are presented with and many times in life for us it has to do with the way we have forgotten."
     - David Whyte
My notes condensed from a podcast "Midlife and the Great Unknown" (Sounds True/itunes)

I had a phone consult with me ME/CFS doctor yesterday. I'll talk about that in my next post. My apologies for the uneven format-I'm too fatigued to fix it.   : )


Lee Lee said...

So glad to hear you sounding positive again this week. I hope that feeling stays with you. xo

me/cfs warrior said...

Thank you Lee Lee. I hope the feeling stays with me too. You helped me turn a corner emotionally-just so you know....xo

Sue Jackson said...

Sounds like a rough week, but good for you for working through it and re-focusing your limited energy toward a better path of acceptance! I am proud of you for pulling yourself up and thinking all that through.

And remember, you are not alone!! I think every one of us with ME/CFS has been where you are and thought many of the same things.

We are here for you.


Reading the Signs said...

This is real Mindfulness - an inspiring post. Thanks.

Corinne said...

I spent my birthday this year in the hospital in the middle of a terrible relapse that I thought was the end. But the ups and downs are part of it. I'm back up again. ...People do improve after very bad prolonged crashes.