Ralph Ginsburg Coca Crystal

The first thing on Jackie Diamond’s to-do list: “2008 – Publish book.”

“You see I’m behind schedule,” the 64-year-old said of the unfinished work, her chest purring with laughter. “I got busy with cancer.”

Ms. Diamond is better known to students of the underground as Coca Crystal – a secretary, writer, and “Slum Goddess” for The East Village Other who went on to host a cult cable-access television show for nearly two decades.

In 2006, she was diagnosed with lung cancer. Since then, she’s had three operations to remove over a third of her lungs, undergone chemotherapy, and become a patient at Memorial Sloan-Kettering Cancer Center in Manhattan. The last time her cancer returned, her doctor told her it had spread to a part of her lung that was inoperable.

Her to-do list continues: “2010 – Movie based on my life released. Drew Barrymore stars as Coca Crystal.”

“And then the dignitaries and the party,” Ms. Crystal imagined. “And then I’ll live happily ever after. Finally.”

But the real reason she wants to publish her book isn’t the dream of a movie deal – it’s Gus.

Gustav Che Finkelstein is Ms. Crystal’s mentally and physically handicapped nephew. For the past 36 years she has cared for him as her son. He turned 40 last October – “a huge milestone,” she said – but he looks no older than a teenager, his skin unspoiled by age or element.

“Gus knows the secret of the fountain of youth,” Ms. Crystal said as she drove to the tumbledown house they share near Woodstock, N.Y. “But he won’t tell you.”

Coca Crystal Gus Finkelstein

Gus can’t speak. He’s autistic, and for the first 12 years of his life, he suffered from epilepsy. He bears a striking resemblance to a young Mick Jagger, with thick lips stretched wide. The pupils of his feline eyes are thin like keyholes, due to a rare chromosomal disorder. Since they can’t adjust to daylight, the little time he spends outdoors is spent in the shade,with sunglasses on.

Ms. Crystal took custody of her frail and sickly nephew in 1975 after her sister landed in a Moroccan prison for possession of hashish.

“I got a call from the State Department and they said, ‘If you don’t take this kid he will be put in an orphanage in Casablanca.’”

She was a single 27-year-old living in the East Village and knew next to nothing about children. But she had little choice. She picked him up at JFK airport.

“When I met him he was like Sonic the Hedgehog – he was all over the place. I couldn’t keep up with him. He was frightening; he didn’t speak. I couldn’t figure him out,” Ms. Crystal recalled.

A short independent documentary filmed a couple of years later shows the tiny six-year-old terrorizing a young Coca Crystal – her hair long and dark then – and her narrow East Village apartment. Walking through her neighborhood, she holds the temporarily passive child in her arms, and it seems everyone knows and likes the unlikely pair. A fruit vendor offers free produce to Ms. Crystal and gives Gus a pat on the head.

Two years after she became the child’s caregiver, she launched a TV show called “The Coca Crystal Show: If I Can’t Dance, You Can Keep Your Revolution,” which she hosted and produced from 1977 to 1995. The weekly variety show belonged to the golden age of public access TV, an underground medium that served as a platform for deviance well before the dawn of YouTube, where many of the videos live on.

The show’s host achieved minor celebrity status. A review in TV Guide called her “lascivious,” and some of her shows were featured in an exhibition at the Museum of the Moving Image last year.

Ms. Crystal opened each episode smoking pot (in one instance, she “magically” extracted a joint from a flowerpot) and ended it by dancing with her guest. Philip Glass, Deborah Harry, Abbie Hoffman, and Tuli Kupferberg of The Fugs were among those who appeared on the show. Her “executive producer,” she liked to say, was Gus.

“I wanted to prove to the world that you could have a kid like Gus and still do stuff,” she said.

Her book – part autobiography, part guide-to-Gus – will provide Gus’s future caregiver with insights on how to do the same. She described it as an owner’s manual of sorts.

Where to begin? How about 5:50 a.m. That is when you’re going to have to get your ass out of bed and literally drag Gus out of his. This is not an easy task.  He will not want to get up. If you make a lot of noise going into his room, he will hear you and prepare to resist… You also need to be careful as he can give you quite a kick that may knock you across the room. Ladies, he will hit you right in the chest.

After Gus had “aged out” and was no longer eligible for programs backed by the Board of Education, Ms. Crystal was forced to make a change. She discovered that upstate programs for handicapped people sponsored by The Arc were more hospitable to his needs than those in the city. So she moved away from her friends and family – and “the parade of hippies” – just outside her door.

These days, she spends a good deal of time changing diapers and feeding and cleaning her nephew. But she also revels in quiet moments like “Cartoon Afternoon,” her name for the blissful afternoons during which they watch cartoons together and then drift off into a “dreamy afternoon nap.”

Sitting in her kitchen and sipping peach iced tea that she and Gus made together, Ms. Crystal said,  “I already know that it’s kind of special that I did this. That I gave up all chance of a career, all chance of a family.”

“Many of my friends thought I was crazy,” she went on. “And they thought I was throwing my life away. That somehow I owed it to the world to do something else. I don’t know what that something else would have been.”

She often describes her life as unconventional. “I don’t have a normal sleep schedule, I have a bizarre child, my dog is limping, my cat is in love with the dog. It’s just a little bit off the beaten track here,” she said.

But then again, Ms. Crystal never cared much for the ordinary. “When I’m in the hospital and wondering where I’d rather be, I’m thinking I’d rather be sitting with Gus watching ‘Tom and Jerry.’ That’s the best I can think of.”

Hear Coca Crystal talk about her time at The East Village Other and with Gus here.