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Defying the odds, Ross Krinsky holds on to life

Bob Krinsky, left, and his son Ross share a love of music and a tight bond, one that has kept them close through some tough times. - Pete Welch photo
Bob Krinsky, left, and his son Ross share a love of music and a tight bond, one that has kept them close through some tough times.
— image credit: Pete Welch photo

Two months ago, when it looked like Ross Krinsky was near the end, his small room at Harborview Hospital was transformed into what Vashon High School teacher Harris Levinson called “a Paris salon from the early part of the 20th century.”

Friends came from all over the country. His family virtually moved in, as did two of his dearest friends, Alyson McLean and Kyle Britz. People stayed for days, carrying on lively conversations, playing music and holding a kind of Ross Krinsky festival right there in his room. Some thought they’d never see this beloved Island man again, and they gave him all they had.

“The love in the room,” Levinson added, “was palpable.”

But Ross Krinsky — young, brilliant and iconoclastic — said he wasn’t ready to go, his father, Bob Krinsky, recalled.

“I’m not done with my work on the planet,” Ross told his doctor when he awoke from a near-coma.

Now, two months later and nine years after being diagnosed with a brain tumor that has thrown his endocrine system profoundly out of whack, Ross Krinsky, 23, is back at his family home on Wax Orchard Road — still quite ill but also very much alive.

Because of the tumor’s pressure on his optic nerve, his eyesight is nearly gone, so he’s learning Braille and listening to books on tape. “Hobbes, Locke, Kant and transcendental stuff,” he said when asked what he was reading.

He continues to enjoy a Vashon music scene he helped to spawn as a teenager and last weekend went with a friend to the Red Bicycle to hear Publish the Quest.

This weekend, he’ll show up at the music venue again, this time to be fêted by Islanders at a concert featuring The Pharmacy and celebrating his remarkable life.

Asked how he’s weathering the vicissitudes of his illness, Ross — spread out on a couch in the family’s cozy, candle-lit living room — spoke slowly but clearly.

“We have our highs and lows, ... but I’m pretty high on life, and I’m loving the planet,” he said.

He smiled as he looked towards the visitor perched on the end of the couch next to his slipper-clad feet. “I can’t stop loving life. And I’ve tested the boundaries, honey.”

***

Hundreds of Islanders know Ross, if not by name, by his appearance.

For years, he was the teenager on Vashon with a huge mohawk, often dyed vibrant colors. At age 13, Ross, a short, freckled boy with round cheeks, sported a spike four inches tall. When he got bored with that, he went for a bi-hawk and then a tri-hawk.

All the while, during his high school years, he was wowing his teachers not with his physical demeanor — he wore a lot of silver-studded leather — but with his brilliance.

A scrapbook is filled with certificates from Vashon High School’s academic achievement night — “academic excellence,” each one says, in drama, American studies, Japanese, geometry. He graduated with a 3.996 GPA.

“In Ross Krinsky,” Levinson said in an e-mail, “I discovered a student who could not wait to learn.”

He grew up on Vashon in the family home on Wax Orchard, with his parents, Bob and Delilah, his older sister Jana and his younger sister Ginger — enjoying a childhood that seemed both all-American idyllic and remarkably unorthodox.

He recalled catching newts and frogs in the woods behind his home and developing a deep appreciation for the environment. At the same time, he also developed a fascination for alternative music at a young age. By seventh grade, he said, “I got into Marilyn Manson,” a cross-dressing, shock-rock male musician known for his outrageous stage persona.

The seeming contradictions continued. By high school, he was an activist working to protect the environment and develop sustainable agriculture on the Island while also deeply immersed in Warhammer — a tabletop fantasy war game.

At a young age, he was also making his mark on the Island.

In 1999, he helped to found the Vashon Island Youth Council as well as The Crux — the youth council’s clubhouse that became both a mecca for the alternative youth scene as well as an incubator that helped to nurture it. Twice, he was flown to Washington, D.C., once by the International 4-H Club to discuss the model he and others at the youth council used to develop youth activism and another time to support a piece of youth-oriented legislation.

His father pulled a photo out of the scrapbook that seemed to capture this heady time in Ross’s life — there he is, standing next to Sen. Patty Murray, she in a suit, he with magenta-colored spiked hair and a studded jean jacket sporting anarchy buttons and “Food not bombs” patches.

Ross smiled as he and his parents recalled those days when he became known not only for his deep commitment to youth activism but also his skill with a tube of hair dye.

“I’d have these young girls over and these gnarly 30-year-old punkers, all wanting their hair colored,” Ross said.

Bob Krinsky, a lawyer and rock musician who, like his son, defies stereotypes, said he and Delilah consider themselves liberal parents who’ve trusted their kids to find their way through the world. He established limits with Ross; he wouldn’t let him pierce or tattoo his body until he was 18. But he also said he and Delilah have quite deliberately allowed their children to follow their passions and be who they are, he said.

“These children are fairly formed when they come into the world,” Bob said, explaining his philosophy. “It’s a matter of letting them express who they are and not interfering too much — not too much praise or too much blame.”

He added: “Ross achieved the things he achieved, not Delilah and I.”

They’re also a close-knit family who “did everything together,” Bob said. “If the kids weren’t invited, we didn’t want to go.”

Bob and Delilah are charter members of the Oregon Country Fair, the alternative music and arts festival near Eugene; Ross, Jana and Ginger have gone every year of their young lives.

Six years ago, Ross made a mark at the Oregon Country Fair, as well. At the invitation of the organizers, Ross joined spiritual leader Ram Dass on the a stage before hundreds of people, where Ross performed at the fair’s first “spoken word” concert.

The country fair’s program later described the event with “these two icons” — Ram Dass, “with his wisdom, his bountiful baldness, his time-tested hippie halo,” next to Ross Krinsky, “with red, white and blue spiked hair” who “waxed most brilliantly and potently about the absolute necessity of urgent environmental actions.”

“The contrast,” the article said, “was mind-boggling.”

***

Illness has also been a big part of Ross’s young life.

He was 14 when his parents, concerned that he was not growing, took him to a pediatric neurologist in Tacoma. The doctor assured the couple that Ross was fine and that his short stature was within the realm of normalcy. But Bob, whose law practice has occasionally taken him into the darker side of the medical world, knew enough to push.

“Let’s just get some baseline data,” he suggested, and the doctor agreed to take what he called “a feel-good MRI.”

A few days later, on Aug. 13, 1999, the results from that feel-good test came back. Ross was diagnosed with craniopharyngioma, a rare, pediatric brain tumor that results in extremely painful headaches, pituitary failure and, sometimes, blindness.

Two weeks later, Ross went to Children’s Regional Medical Center for brain surgery. He started his freshman year of high school with 50 staples in his head.

After that came six weeks of radiation therapy where Ross continued to display his enthusiasm for life. Delilah held up the leather jacket he adorned with hundreds of silver studs during that period; he’d work on it while sitting in the waiting room, she said.

Medically, Ross did fairly well through his high school years. And in 2003, after graduating third in his class, he headed to Reed College, bent on exploring his interest in bio-ethics, philosophy and environmentalism.

But as Bob put it, “We got slammed again.”

Ross had been there only one semester when Bob and Delilah got a call that their son was headed to the emergency room with a blinding pain in his head. Ross never went back to Reed.

In the five years that followed, the family has been on a medical roller coaster. He had another surgery, after which his eyesight began to fail. Twice, he’s been airlifted from the Island. He’s seen teams of neurologists, hematologists and endocrinologists. Asked how many specialists they’ve gone to, Bob and Delilah said they couldn’t even begin to guess.

“So many things are out of balance that he’s the only one in this situation,” Delilah said.

The problem, they say, is not the tumor — it’s benign — but a cyst on the tumor that has proven inoperable. The cyst has put pressure on his pituitary gland, which in turn has profoundly altered his endocrine system. The ramifications have been extreme. Ross has struggled with blood clots, with his body’s salinity levels, with weight gain.

“Every time we think we’ve had the last insult, something else happens,” Bob said.

The family sat in their living room as they talked. Sixteen-year-old Ginger, blonde and, like her brother, precocious, perched on a stool nearby, chiming in on occasion about one incident or another. A halo of candles blazed on the coffee table, next to a plate of cookies. The family’s two dachshunds nosed a visitor gently.

Delilah, a jeweler, has given over her days to caring for her son.

“It’s my life,” she said, not a hint of bitterness in her voice. “It’s pretty confining. But it’s what I’m here for. He’s my kid.”

Indeed, the doctors are amazed by the level of care the couple is able to provide their son. Bob notes that they’ve become their son’s chemistry set, tracking what’s happening to his body with an expertise that’s come from their dedication to Ross as well as their remarkable grasp of the medical world.

“We know more about how to manage him than the doctors do,” Bob said.

For his part, Ross speaks of his parents with an almost reverential respect.

“My parents are the most beautiful single entity I know,” he said. “The way they interact — it just makes me well up thinking about them.”

He also said he continues to embrace life. He occasionally goes out to dinner with friends; he’s eager to learn Braille; he’s turned on by some of the books he’s reading and the direction they’re taking him intellectually.

“I still consider myself open to change,” he said.

Bob and Delilah say their profound respect for their son has only deepened in the last few years, as they’ve seen his body — but not his spirit — dimmed by the disease. Almost daily, they said, he expresses gratitude for life, for the planet and for his friends. He lives for the moment, they noted. Even with his eyesight failing, he talks about colors and shapes he can see, happy, it seems, for what his body is still able to offer up.

“It’s like living with Buddha,” Bob said.

The September trip to the hospital was hard on the family — an “emotional whiplash,” Bob called it. “And we’re pretty steely.”

But they continue to maintain a faith and hope that things might turn out right for Ross.

“We haven’t let him go,” said Bob.

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