The F Word

So, I’ve been thinking of the F word lately. Not that F word, but the other one.. the one in the acronym of CFS/CFIDS. That dreaded word fatigue.

In the thick of a long standing crash, it strikes me even more deeply just how grossly inadequate a term it is for what we experience. In Hillary Johnson's Osler's Web, Dr. Mark Loveless was quoted as saying that, at their worst, "the CFIDS patient feels every day significantly the same way an AIDS patient feels two months before death.” If I were to try to capture such a feeling in a word, I’m not sure what I would use, but it wouldn’t be fatigue.

The eloquent Ms. Laura Hillenbrand (author of the best-seller Seabiscuit and long time sufferer of CFS) put it this way: “This illness is to fatigue what a nuclear bomb is to a match. It’s an absurd mischaracterization." Indeed.

As I was contemplating this frustrating word one morning, I wanted to attempt to give it a bit more weight and power somehow. In the process, I ended up with the idea for the following... well, poem of sorts. Please bear with me here. I have not written more than a couple poems since I was a child. This is an amateur attempt at best, but I wanted to share it anyway because this word is so often misused in relation to our disease.

F is for fierce, ferocious, feverish fatigue, it's
Flamed fingers folding over you, filling you with its
Feral, filthy fumes until you fall face forward,
Fallowed from its forbidding force. Your
Former self, physically now so fragile and frail,
Falters and fumbles, yet…
Fervently forges
Forward
Fighting for a
Fleeting flicker of freedom.
F is for the felicity of fabulous fantasies that
Float effortlessly in the fluidity of dreams,
Fearlessly and faithfully flourishing in flight,
Foretelling a
Future
Fully
Fortified
Functional
Fruitful
Full-bodied
and
Finally
Fervently
Free…

--LB © 2009

See how the poem is in... the shape.. of an F? And I used mostly all F words? Hello? Anyone? ;) Okay, a bit forced, but I tried. :)

Thanks to all those who left such wonderful comments of support and encouragement to me with my last post. It was so appreciated. Regretfully, my crash continues and has not yet fully abated. It's been a very rough few months, to say the least. I'm a bit concerned this may be my new CFS "normal," but I'm trying to remain as patient as possible, and as always, I continue to hope.

Waiting from Within

I wrote this poem several years ago, not long after first becoming bedridden with ME/CFS.

WAITING FROM WITHIN

I lie each day
beneath the thick covers of my bed,
my body slowly descending downward
far beyond the realms of exhaustion
and sickness,
as though I am perpetually dying.

And yet,
the very center of my being,
the essence of who I am,
remains deeply alive;
familiar, constant and unyielding.
It exists of a strength and vitality
entirely its own
as it waits silently from within
for its wondrous moment
of release.

For now,
I can only watch as the days pass
outside my bedroom window.
In the distance,
I can hear
a baby crying
and a woman laughing
as birds sing out their songs.
I imagine that their expressions are my own.
They each speak for me
with a voice and a freedom
I do not yet possess.

--LB © 2002

The opening of this poem was inspired by (and slightly borrowed from) the following quote:

“Each day as I would slide into the downward spiral of my symptoms, I would feel as though I were suspended at the edge of death. As if I were perpetually dying.”

Susan Griffin, describing CFS in What Her Body Thought: A Journey into the Shadows