Perfect Storm

Synovial sarcoma.  The name it’s self carries the sound of a storm.  Not the type of storm that has you cozying up in your home while you watch safely from your door feeling the slight spray of rain and a chill of excitement as lightning dances across the sky but the type of storm that takes down trees, knocks out your electricity and blows the roof of your house off.

Jackie’s life lately has been exactly this kind of storm.

After a storm, the sky clears and in the wake of devastation, what remains is broken beauty, stillness and clear fresh air.  You fill your lungs with that air and know that you are more alive than ever.

A friend in Arizona mentioned that she knew someone that might be perfect to be photographed for the Grace project.  A breast cancer survivor who had also recently had her leg amputated.  “This would be so good for her to do… and she is so sweet, so lovely”.

She calls Jackie and I can hear the distant muffles of enthusiasm as my friend looks at me and mouths the words “yes, she wants to do it”.  They continue to chat when suddenly my friends eyes go wide… “you don’t have breast cancer?… what? you have… “  she look’s at me and exclaims “synovial sarcoma, it’s a different type of cancer”.  I can now hear the muffled groan of dismay across the phone and see the disappointed look on my friends face.

“She’s grandfathered in, I declare, she gets to be photographed”.  How could I ignore the enthusiasm I had earlier heard on the phone?  I couldn’t disappoint her… add to her suffering and besides she still fits with my concept of broken beauty.  The Venus Di Milo was missing her arms after all.

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Jackie was effervescent with joy.  My crew and I drove around looking for just the right spot in the desert.  We needed to be discreet… but maneuvering a woman with a recent leg amputation, a badly fitted prosthetic and a walker through the rocky, jagged and cacti filled desert behind the Mayo clinic was not exactly stealthy. We settled on a spot a few yards into the desert.

Removing jeans and shoes from a prosthesis is difficult in the best of circumstances, but in a prickly, rocky, sandy desert, unequivocal. Jackie was helpless as this was all rather new to her. Undressing her was like undressing a life sized doll.  It took some time. Using all of my strength I lowered her to the ground. This was the first time she had sat on the ground with her prosthesis… the first time her prosthesis had been without shoes and the first time she had ever been photographed with so few clothes.

Moments into my shoot, Kathleen, my assistant for the day comes running back to the cactus we are barely hidden behind.  “There’s a cop in the parking lot… someone must have alerted security!”  I panic knowing the difficulty of redressing Jackie, and navigating our way back out of the desert with her walker and all of my equipment.  I take a deep breath and continue clicking.  “I’ll stall him” Kathleen says.

Kathleen heads back to the officers car and loudly announces… “Hi officer, I just wanted to let you know we are not burying bodies back there, we are doing a photoshoot for cancer”. “Oh don’t worry about me” he says, “I come here every day to eat my lunch.

We all let out a harmonious sigh of relief and then we laugh.

Jackie declares, “I’m just so happy to be alive… just so happy to be alive.” She fills her lungs with clear fresh air looks to the sky and knows that she is more alive than ever.

– Isis Charise.

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