Once Upon a Time I was BLIND

Once upon a time, I was blind. THEY said I’d be blind for the rest of my life. Today is the anniversary of the day my sight returned. It’s been 15 years and there is not a day I do not wake up grateful that I can see. I’d been fighting the horrific effects of toxic encephalopathy that was ’caused by acute toxic chemical exposure’ for five and a half years. The first year I deteriorated badly: sick-sick-sick, constant excruciating pain, neuropathies, short-term memory lapsing then gone, my brain was frying, I was blind, falling down, passing out in the middle of a sentence. My list of diagnoses stacked about two feet high. By the end of the first year, some honest MD’s admitted they didn’t know if I’d live or die. I chose to live. I chose to fight. I’d grown up the child of an MD and  medical professor, with immigrant grandmothers who believed in more traditional medicine and dance mentors who taught me those and ancient technologies that were then called ‘Eastern Medicine.’ Now they are called ‘Holistic.’  By age fifteen, I’d chosen Holistic for my own health style and began studying a new science called peak performance, then only being studied in sports medicine. Dancers are athletes. It mattered to me. I became an expert and later a professional peak performance consultant for dancers, athletes, and later, as more people discovered what peak performance was, for high achievers in the corporate world. What I knew saved me. Everyone thought “Oh–she can SEE now, she must be completely Well.” But the challenges of bringing an injured brain back to peak function were far from over: it took me more than a year for other returning brain functions to re-organize and even today, I still deal with the ‘invisible disabilities’ of MCS (Multiple Chemical Sensitivities) and ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.) Millions and millions of people around the world deal with those. So although I’d love to spend the rest of my life enjoying the sight I have and immersed in the art and music that I love, I study. I write. I share. But today, on the anniversary of getting back my sight, I will go see the beauty around me. And share with you a little bit from my past.

Imagine: a woman who was once told “you’ll be BLIND for the rest of your life–accept–adjust” made this video all by myself just a few short years after getting my sight back!

Being blind is a scary and crazy experience for anyone–but I’m an ARTIST. I could no longer see–but I couldn’t possibly give up the rich world of ART. The Getty Center had a VISION: to create a program to give real ACCESS to their amazing collection–so blind and sight-impaired visitors could come with their families and friends to reap the many benefits of ART. They called for for a committee of blind and sight-impaired people who loved art to help them create that ACCESS. We came. Six months later–the Getty had a wonderful audio tour and incredible replicas of details from great works of Art that could be appreciated through the sense of TOUCH. I was so impressed with their vision and the access they’d created, I challenged them to go one step further: were they ready for a Blind Artist as a Docent? They had the vision to take me on. THAT saved my life! I could now be surrounded by the world’s great works of Art I could see in my mind’s eye and through the eyes of the visitors that I challenged to see what I could no longer see.

One day, I received a call from the director of the docent program at the Getty. They’d received a communique that delighted them, showing them that their docent program–and their blind docent–was succeeding as they’d envisioned. I’d inspired one of their visitors to take what she’d experienced at the Getty, think about it, and consider a whole new perspective on art–and the experience of art–than she’d had before. And to share it others upon her return home. This visitor turned out to be one Karin Eaton, Executive Director of an Arts Council in Canada. They forwarded her e-mail to me and asked my permission to provide my e-mail to her.

Karin asked me to write this article to publish in Surface and Symbol, the Arts Journal of the Scarborough Arts Council, Toronto, Canada. By empowering a blind artist to keep experiencing art she could no longer see, the Getty Center continued to empower my coming back to a meaningful life. Karin provided me with a whole new challenge for my injured brain. Writing and editing an article –about me– on my talking computer.

Perspectives On Vision from a Sight-Impaired Artist
Preface by Karin Eaton:

“All art starts as an idea; you don’t have to be able to see it to appreciate it.” These were the words I overheard at the Getty Center in Los Angeles that set off a series of events resulting in the inspiring article by Z. The words startled me. I had already spent several hours touring, exploring, gasping with amazement and wonder at the Getty Center; its art, its architecture, its environment. Such a provocative statement could not be ignored. I turned to look at the speaker. She was obviously a docent doing one of the many architectural tours of the Getty. But no ordinary docent, Z, as I have come to know her, had the dark glasses and white cane of the blind. Even now as I think back at the moment, tears come to my eyes. I was so moved by the significance of her words and the obvious ‘vision’ of her own actions, that I was unable to speak. I repeated her words in my mind and wrote them down so I wouldn’t forget.
 
When I returned to Toronto, the incident had an unreal quality that continued to haunt me. I had to contact this person. I had to share with her the fact that I had quoted her in presentations and conversations. Through the miracles of technology it turned out to be quite easy to track her down through the Getty Center website. And so an email relationship was born.

Z makes me remember why I slog away as an administrator helping artists have a place to be. Z makes me realize that the color of every day is different and that they’re all wonderful even the gray ones. I knew that Z’s vision should be shared. Read her story for yourself. Be inspired. —Karin Eaton

My name is Z and I am blind. I was not born blind. It has been about three years. I am fortunate enough to have seen many of the great wonders of the world, to visit great and small temples of art and culture on four continents.

In early 1998, a freak environmental accident left me with extensive neurological damage that resulted in blindness and multiple disabilities. No matter how much one changes in life, I do not think we can change the core of who we are. I am blessed: I am a highly spiritual person and a creative spirit. When I became brain-damaged and blind, Spirit, creativity and art saved my life.

“Once upon a time there was a little girl who loved the art of magic and ritual, and the magic and ritual of art.”

Born and raised in New York, I am the daughter of immigrants. I first learned the language of my grandmothers, and then had to learn the language of my country. I began to learn the global languages of art, dance, and music.

My first taste of multi-media was in the Byzantine churches of New York City: all carved and gilded wood, vividly painted and gilded icons, glowing in the light of candles, scented with frankincense and myrrh, ritual filled with chanting and the rich choral traditions of the Eastern Orthodox church.

My first taste of magic and transformation from the marvelous folk tales of my people. From my youngest childhood, life was a magical, multi-sensory experience.  Early in my career as an artist, I was my own medium. A child in love with ballet, I began to train my body in that rigorous discipline. I grew, adding other dance forms and I loved the immediacy of expression that came along with a trained body. I think it is the discipline that I learned in the dance studio, honed by some of the finest dancers in the world, that has allowed me to cope with disability and the long road back to rehabilitation.

I am very fortunate to have a brilliant mother who loves art, and our mother/daughter time, on stolen lunch hours was best spent at the Metropolitan Museum of Art. We would mount those steps and she would ask: “Where do you want to go today?”  I would wander the halls of the UN Secretariat building while she worked. There is some astounding art there–each member nation sends its best. I would visit works that sent my imagination soaring–everything from huge antique tapestries or mosaics from Iran or Iraq, incredible elongated statues carved from African woods, paintings from around the world, and one of my special favorites, a stained glass window by Marc Chagall.

That early exposure-to inspiring art and inspiring visionary people from around the world–gave me a global consciousness and love of diversity.  I became interested in world music, world culture, world religions and mythologies.

Always fascinated with the magic of perception, I cut my adolescent teeth on Huxley’s writings. The concept of liquid theater really grabbed me. I wanted to feel everything, experience everything. I would play at what would it be like if I were a tree? A cloud? A Roman statue? How did it feel different in pose than a Greek statue? What did an Egyptian pose evoke? What about a Rodin? Or a rearing beast, or a Matisse?  As a young dancer, I would forget other visitors at the Met, and stand in front of a statue or painting and take a pose.  What movement came before the pose was frozen? What movement did it flow into? Who WAS that person, what did they feel like? Who was the artist, why the choice of that moment to capture forever? What would it be like to see or feel as they did?

The concept of synaesthesia has always fascinated me. Most everyone can say what the “blues” sound like. But what does red SOUND like? How does yellow TASTE? And if silver had a scent, what would it be?

Oddly, before I became blind, I had some “experiences” at it. As a young child, I learned my choreography on a stage that was marked. My mentor (an old and famous Diaghalev dancer) blindfolded me and told me to do it again! I protested. She explained that when performing, I would not be able to look at the marks on the floor, I would not be able to see the audience or other dancers. I would have to know where I was by my other senses. That rocked my world!

As a student at an experiential college, I explored what it might be like to be in a culture so foreign that we would be as blind or mute: we spent a couple of days in pairs, one blindfolded, both unable to speak. It was terrifying at first, but once you went with it for a few hours, it was profound and deep. Later still, I went through a bout with a strange disease which put varying pressures on my optic nerves, putting me though a year of sight changes that were highly disturbing. Sometimes I could see perfectly, though there were times that things looked very distorted. After a year or so of changes, I was left with a stabilized tunnel vision, and a loss of some color differentiation: I could no longer see those fine gradations of the millions of colors I once saw. I thought THAT was bad! I had lost my pastels, and could no longer always tell the difference between scarlet and crimson. I suffered eye fatigue after 6 or so hours of intense work that would take my ability to differentiate between related colors, blur detail. I adapted by using only a few different colors of paint at a time, and placing them in their proper places, by scheduling my activities for the “good” sight hours of the day, by using the eyes of artist friends. I went to see things early in the day. If I had to really see later, I would have to rest my eyes completely for hours before.  I saw several specialists, hoping for the return of what sight had become impaired, one the guru on this syndrome. Dr Guru and the others concurred. I had stabilized for some time now, they said “what you see is what you get–won’t get any better, won’t get any worse–adapt.”  They told me it wasn’t so bad, and as the woman in the next room was getting ready to have her second eye removed, I understood. I adapted. I kept making art.

In early ’98, an accident changed my life. I was ill. I saw doctors. They said I was now blind. I thought that would clear up in a few months. Instead, my sight and health roller-coasted. I began to fall while dancing or walking. I could not make the two sides of my body cooperate. It got worse. I was in constant excruciating pain.  Over the course of the next year, sight became a colorless fog of shadow-y amorphous forms and movements–if I was close enough. I became anoxic, and more disabled. I experienced all the things we human beings go through when disaster hits. Anger, terror, self-pity… the gamut.

I am blessed to be surrounded by some of the most wonderful people in the world and I am grateful for the friends who help and encourage me.  A few years later, I have gathered a rehabilitation team of awesome cheerleaders who help me find ways to heal, and cope and fight the damage, rebuild my injured brain.

I refused to accept that making and experiencing art was lost to me. I still make art, though now I sculpt, and carry color charts in my purse so others can correctly provide or describe a color to me.  I learn adaptive technology (talking computers) to allow me to return as fully as I can to life, to work.  I visit galleries with many people, visit artists and ask them to talk to me about their work while I feel it with my hands. Unless paintings are a completely flat wash, one can feel direction and texture and intensity of brush stroke.

How each artist describes their work is fascinating. Some start with the visual gestalt. Some with the idea that inspired it or the feeling they want to convey. Some focus on a favorite detail or the process.

I want to know colors: what KIND of green is it? Very few blind people have been blind from birth–so most have some sort of color perspective. To hear something described as a “nice” color is like describing a chord as a “pleasant” one. Is it major? Minor? Does it have a flatted 5th? Don’t know the names of colors? Tell me: is it army green? Kiwi green? Green like spring grass or summer? Evergreen? Swampy green? Insect green? I am always asking people to share.  I have a friend whose description of the sky can make my spirit soar.

How would YOU describe the Sistine Chapel, given 5 minutes? Picasso’s Weeping Women?  What would YOU choose to share?

All art comes from inspiration that hits in the form of an IDEA. An artist communicates that idea for viewers to be touched and to share. Sighted or not–everyone can understand and share an idea.

I met a blind poet who had been a painter in his pre-blind life. He said it made him so mad that he couldn’t see that he shunned his artist friends and became instead a wordsmith. A feted and honored one. But I could not believe that he would give up what I hungered for.

I believe in magic and transformation.

A young girl, I saw a protest march in Central Park.
Someone had painted a sign that said “Accept no Imitations.”

Someone else took the paintbrush, still wet, and added an “L” and it became:
“Accept No Limitations.” My credo for life.

By NZ  Zazhinne, March 2001, ‘Perspectives On Vision from a Sight-Impaired Artist’ was originally published March 2001 in Surface and Symbol, the Arts Journal of the Scarborough Arts Council, Toronto, Canada  volume 13 no.2

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