August 7, 2009


Once in a while somebody fights for breath.
He stops, getting in everyone's way.
The crowd flows around, muttering
about the flow of crowds,
but he just fights for breath.

Inside, there may be growing
a sea monster within a sea monster,
or a raven named
or a huge muteness of fairly tales,
the wood-block baby that gobbles up everything.
Inside, there may be growing
an abandoned room,
bare walls, pale squares where pictures hung,
a disconnected phone,
feathers settling on the floor
the Encyclopedists never moved out and
Dostoyevsky never found the place,

lost in the landscape
where only surgeons
write poems.

~ Miroslav Holub - Czech poet and physician
excerpt from the poem 'Vanishing Lung Syndrome'

What's this all about? It's about a rare syndrome - not enough understood to be a disease, but enough to kill. It's about radiographs, hospital gowns, timelines and statistics. It's about waking up one day and finding out that every day suddenly means more and that something you never think about ~ breathing ~ is now all you think about. It's about my friend.

He is practically my brother. We think & say the same things at the same time, share a wicked, sarcastic sense of humor, seek out the finer pleasures life has to offer (even when it isn't good for us), bring each other up when down. Besides my husband, he is the only person on the planet who knows EVERYthing about me. And loves me, anyway. That means a lot.

He is 39 years old, has hepatitis A & C, found out a year ago that he's HIV positive and has already survived a rare childhood cancer. How much is one being supposed to have to endure? There is no answer. This is one example of why I don't believe in the Christian version of God. And, please, refrain from telling me why he exists and why I should believe. I don't want to hear it.

The poem excerpt above was written by a Czech doctor who was diagnosed with vanishing lung syndrome. When his scalpel failed him, he turned to his pen. It seems to me that, when we are alone, words and the thoughts that produce them are all we have to navigate our journey. It's what I am doing here. How I try to explain the inexplicable to myself. It helps keep me afloat on the waves I know are ahead. I'll be in the boat with him.

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