What the Heck are They Talking About: Neurological CFS: Worse than I

As a photo instructor I often asked my students to tell a story using an image without a caption as the jumping off point. Sometimes the words were poignant more often we got into really outrageously funny battles to top each other and I laughed as hard as anyone. What mattered was not the details, but giving voice to the silent language of emotional content.

This events of this past week forcibly reminded me of the visual storytelling I taught in what seems like another lifetime. Disabled or not, like all photo editors I was glued to the wires this past week, watching a cascade of images of the aftermath of the tsunamis that stole so much from so many this past Sunday.

Unlike the unceasing clamor of the newsrooms, I viewed these images in complete silence; my head filled with the stories that only the dead can tell.

As may be for many others, images of death and grief dissolve the boundaries of culture, religion and race, leaving my soul twisting, my heart clenching, my steps swiftly seeking out my only available child: her protesting squeals smothered by kisses, holding her tightly, attempting to ward off all danger with the ferocity of love. If I could have gotten my hands on my older ones at that moment they would have faced the same physical fate. As it was, I too know the powerless uncertainty that goes with physical distance from a loved one.

But, this time the stories resonated at a far deeper level in me: they forced me to lift my glazed and staring eyes and realize that belly button lint was obscuring my vision, not death.

You see, the reality of nonpsychiatric CFS/ME and fibromyalgia, sometimes feels as if they've drained my life of all color. A form of living death I moan more or less meaning it, but, be that as it may, I am alive. And while my pleasures may be simple, they are still mine. And no one can take them from me without my permission.

Okay I see your point, but natural disasters and wars never ask anyone's permission anyway.

Like so many others, including you, I am weathering a disaster of incomprehensible magnitude, unsought, and unlooked for, and yet, I am still here. A rather small and battered scrap of humanity still clinging to life I snort to myself with a roll of the eyes.

Yet, hope and joy remain mine for the taking just as they do for all living beings.

Unlike those still forms whose stillness is so unyielding: a grotesque parody of the life-giving renewal of sleep, unlike my own parody that always yields to morning light.

We do live and no matter how little we have, that is priceless. Please, please consider giving back to the world even if all you have is a budget busting $5, even if parting with $5 seems impossible. I know for us, my daughter and I discussed it and decided that more PBJ sandwiches wouldn't kill us. That's not melodrama just the reality of disability and poverty. And yet I'm must beam with pride a little here. Generous relatives and friends contribute much of the sparkle to my daughters world and yet without discussing it with me, my daughter, like hundreds of other kids, took her Christmas money into her school to contribute to schoolwide donation. She may be one ill little kid, but her heart and soul are strong and there is nothing crazy about her.

Okay, so I just can't resist the occasional aside, but be that as it may, my point is unwavering: maybe, sometimes, giving is the best possible way of acknowledging that life is worth living even if the trigger is the silent language of loss.

Donations can be made through both the Red Cross and Doctors Without Borders sites. If you wish to donate to the Red Cross with the click of a button, Amazon.com home page has made that possible for their readers. As of December 30, 2004, @ 7:20 EST, 94,903 Amazon.com visitors have donated $6,107,582.21 to the Red Cross. You may also wish to donate through Oxfam.

I would also like to mention that you can also donate from the home page of the British Medical Journal along with other websites of all persuasions. It reminds me that all of us are human beings capable of great compassion, as well as the overwhelming talent to make a horse's patootee out of ourselves.
Shhhh! Of course I mean BMJ not me and other people who think like I do -are you daft?! LOL fellow travelers, laugh out loud we are pretty hilarious bunch.

"May The Lord bless thee, and keep thee: the Lord make his face shine upon thee, and be gracious unto thee: the Lord lift up his countenance upon thee, and give thee peace." -Numbers 6:24-26

29, January UPDATE: If the idea of bearing witness through the photographic medium interests you, you may wish to read the words of Mehul Srivastava, 24, a reporter for the Dayton Daily News who calls it the "heaviest weight in the world."

What the Heck are They Talking About: Neurological CFS

Worse than I

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