Reflex Sympathetic Dystrophy Syndrome

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Taking His Art Beyond Therapy

Devastated by a painful disease, one man sends a message

By A. Ruhling

STAFF WRITER

May 6, 2002

He's rail thin, and he walks - carefully and slowly - with the aid of a

wooden cane. He's 42, but he looks frail. He looks as though he's in pain.

Spagnoli has Reflex Sympathetic Dystrophy Syndrome, or RSD, an

incurable, chronic illness. " It's like having sciatica in all your

extremities, " he said, " and on top of that, having a full-body sunburn, plus

pneumonia. "

He can tell you how there were times that he couldn't dial a telephone, he

couldn't light a match, he couldn't bear to wear clothes, how he soaked in

the bathtub for three days at a stretch, not even getting out to sleep.

But you'll understand it better if you can see his pain. Look at the picture

he's painted. It's called " Thermosystemic, " and it's his personal ode to

RSD, the disease that won't let him go.

Against the black background rise razor-sharp spikes, representing nerve

endings on fire emitting blood-curdling screams. It hurts to look at it. It

hurts to look at Spagnoli.

" It's almost like you're terminal, " he said, " like you're dying, but unlike

death, it is never ending. "

It is through paintings such as " Thermosystemic, " which alludes to a test

that RSD patients undergo, that Spagnoli hopes to make the world aware of

the disease that has so changed his world. Although his mixed-media

paintings, some of which incorporate medications and medical paraphernalia,

are specifically about his own fight with the disease, they are meant, he

said, to chronicle the pain experienced by all RSD sufferers.

Spagnoli's own story starts in 1996. He was a community service facilitator

at a Brooklyn high school, coordinating teenage volunteers. Right after he

moved into his Flushing home, he came down with a mysterious ailment that

would finally be diagnosed as RSD, the poorly understood and often

unrecognized multi-symptom, multi-system syndrome that usually affects one

or more extremities or even the entire body. According to the Reflex

Sympathetic Dystrophy Syndrome Association of America, the disorder is

common, affecting about 5 percent of those who suffer physical injuries, and

dates back to Civil War times.

" I had ripped out all the carpets in the house, and I had gotten repetitive

stress injury in my elbow, " he says. " Then one day I threw a newspaper into

the car - it was the Sunday New York Times, so it was heavy - and my right

arm burned from my shoulders to my fingers. Then my left arm did the same. "

Before he knew what he had, the pain had started to spread and had become

unmanageable. His weight went from 145 to 112. " It's like my nervous system

was being hijacked, " he said, adding that he became super-sensitive to

everything in his environment.

Through the years, he went to several doctors and tried several treatments,

everything from steroids to self-hypnosis. Now, he takes injections of

Buprenex - sometimes two or three a day - to ease the pain. " The drug is my

only pain relief, " he said. " I have to be very careful about everything. A

twisted ankle could set it off. Moving my paintbrush, sometimes I have to

stop after a couple of hours. I'm susceptible to colds. "

It is only through his painting and the support of his wife, , and

daughters Dana, 10, and Maya, 7, that he has come to grips with RSD. " Art

was always my refuge. I began it as therapy, and it became a narrative, it

became a story, " he said, adding that he turned his basement into his

studio/therapeutic center. " I wanted to convey the experience as much as

possible, but I didn't want to scare people away. "

The artwork, which he describes as " lyrically abstract " and which looks like

Damien Hirst on tranquilizers, incorporates RSD-related items. Some are

collages that include syringes, iodine - which is used to clean the site of

the injections - and epsom salts.

It is his hope that the works will be publicly displayed for educational

purposes. " RSD is curable, reversible in the first 60 days, " he said, adding

that he also is writing an autobiographical book about the disease titled

" The Third Fire. " " But doctors are not trained to recognize it until it is

clinically observable, and by then, it is too late. "

Although he is working on other non-RSD projects, including a comic strip

that he hopes to syndicate, his RSD art is his priority. He doesn't want to

sell the paintings; he simply wants to exhibit them to send a message.

Again, he studied the searing " Thermosystemic, " noting that at the very tips

of those nerve endings, he has painted a pleasant blue sky. " That cool area,

I guess, symbolizes hope, " he said as he picked up his wooden cane again.

For more information on Spagnoli's RSD artwork, call 718-460-6818,

or e-mail him at slumber jak@....

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