Monday, November 29, 2010

Laura Hillebrand, author of Seabiscuit, sufferer of CFS speaks out.

"'You have Chronic Fatigue Syndrome,' he said. He explained that it was one of the most frustrating illnesses he had encountered in his practice; presented with severely incapacitated patients, he could do very little to help them. He suspected that it was viral in origin, although he believed that the Epstein-Barr virus was not involved; early lab tests had liked the virus to Chronic Fatigue Syndrome, but subsequent research had demonstrated that some patients had had no exposure to the virus. He could offer no treatment. Eventually, he said, some patients recovered on their own.
'Some don't?'
'Some don't.'
That night, for the first time since March, I didn't dream of being an athlete. I dreamed of being ill. In my dreams, I was never healthy again."
 - from A Sudden Illness - How My Life Changed, by Laura Hillenbrand

Sunday, November 28, 2010

Newsweek addresses legitimacy of CFS

For years, chronic-fatigue syndrome has been dismissed by the medical establishment. Now researchers may be closing in on a culprit.

Friday, November 5, 2010

I am trying to remember

I am trying to remember
what life was like before CFS.
how it was to
do things
watch things
climb things
without worry or concern.

I'm trying to remember what it was like
never to have to construct a plan B and an emergency kit
for every outing
to say "Yes, I'd love to!" to any invitation
to dance to pounding loud music
or float across the floor in a ballgown
to hike up mountains
and feel the strain and glorious pain in my legs
rewarded by magical, far reaching views
to swim in the cool of the ocean
and feel the water wash through me.

to be in crowds of people and hear the hush
before something wonderful is about to happen
to be in a swarm of people and language that is different
dizzy from the richness of a life and enthusiasm
painted by a different palette of colors.

I think it's freedom that I remember.

And what will I remember from now?
I hope to remember the freedom to live by my own clock,
exempt from the frenzy of silicon valley speed.
I hope to remember a life brimming
of art, animals and love.
A connecting of people with hearts
passionate about a common goal
the healing of me,
the healing of all of us.
Of squeezing the life out of each day
even if it's watching the sky stroll by my bedroom window
A living of paying close attention to myself, to others
and making decisions mindfully and in my own time.
That however hard they spin you, tornadoes pass
and love will find you wherever you may be tucked away.

I hope I will  remember.