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Queens Chronicle

The ‘Unwavering Truth’ of neurofibromatosis

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Posted: Thursday, December 4, 2014 10:30 am

The vast, echoing halls of the Queens Museum currently harbor a small, intimate exhibition that takes visitors through invisible journeys of life with neurofibromatosis type 2.

NF 2 is a genetic disorder in which tumors generate and perpetuate across the surface of skin, the nerves, brain and spinal cord.

“Unwavering Truth: Archive of Our Own” explores the rare, life-threatening illness through the lives of artists, poets and ordinary people, as told by exhibition coordinator Kristina Diaz and curator Ryan Camarda.

“We want to show actual people living with NF2, their art, their creativity, and their lives as real human beings,” Camarda said.

The two collected more than 100 photographs, journal entries, poems and pieces of art to make the exhibit truly come alive.

Diaz, diagnosed with NF 2 when she was 8 years old, dedicates her life to art therapy and is a major supporter of the NF community.

Camarda became interested in the cause during a previous production attempt of a short film.

Through crowdsourcing, the pair were able to successfully raise enough money to finish Camarda’s film, which accompanies the exhibition.

“You always see commercials with happy kids or sad puppies, and I hate that,” Camarda said. “It’s quick, shallow, emotional manipulation. Even though it’s quick, effective and for good causes, I feel like it’s stereotyping; they never show what it’s really like to actually live with a disorder, the disease … ‘Unwavering Truth,’ the short and the exhibit, are trying to give people a more complete and complex picture.”

The various pieces are dimly lit in an intimate and personal atmosphere.

One of the most impactful pieces, “Untitled,” a listed poem by Leanna Scaglione, is compiled from experiences and emotions in accordance with her diagnosis and life with NF2.

Parallel to her piece was a wall of CT/MRI scans displaying previous surgeries from 1996 to 1998 performed on Diaz, as well as her and Camarda’s mannequin statue, “NF2 Brain Surgery Patient.”

This devotes itself as a juxtaposition of patient and disorder, opposing one another though one cannot work without the other — a centerpiece of the exhibit.

Four of the largest, and most prominent, pieces of the exhibit were photo collages of Diaz, Shannon Drummond-Wachal, Nathalie Trytell and Keisha Petrus, accompanied by their work, journals and childhood photographs.

As the photographs transition from childhood to adolescence, significant differences between the collages emerge.

Drummond, who was diagnosed at 15, is revealed as a woman who remained strong and optimistic. She was shown in various situations — in a hospital after surgery, with family — trying to smile in each shot taken.

Trytell’s images moved from happy, young and carefree to trapped, uncomfortable and revealing imagery, accompanied with journal entries, which helped to tell her compelling story of pain and depression before her passing in 2011.

“I wanted stillness,” one of her poems reads. “I wanted my brain to stop, Thinking deep darkness.”

The overall tone “Unwavering Truth” creates is a feeling of normality and the understanding that each journey was an individual one.

The gist of Diaz and Camarda’s project was to help those unaffected understand that these people were simply people.

“They are not their disease; this does not define them,” Camarda said of those who lost their battle to NF2. “To me, they are artists …”

If given the opportunity to speak with Nathalie or any of the artists showcased in “Unwavering Truth,” Camarda wouldn’t say anything profound or inspirational, “I would just say hello to them.”

‘Unwavering Truth’
When: Wed.-Sun., 12 to 6 p.m., through Dec. 31
Where: Queens Museum, Flushing Meadows Corona Park
Tickets: $8; $4, seniors and kids; queensmuseum.org

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