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Robert A. Wilson uses a walker to help him get around his apartment. Sentinel Photo by Dan Coyro

Those who use it talk about medical marijuana

It’s a warm and buttery autumn afternoon, and Jyoti Robinson stands grinning with her arms spread wide on the broad sidewalks of Pacific Avenue. "When you see me walking down the street, what do you think?"

Uh, gee ... a petite 40-ish woman, no different than most people?

"Exactly," she says, like a school teacher who’s just gotten the answer she wants from a reluctant student.

The point is, Robinson — known around town as Jyoti Prather before her October wedding — is not like normal folk.

"I am missing more body parts than you can even imagine," she says. "I mean, I have the bare minimum you need to stay alive."

Robinson, 46, is a cancer survivor, and she does mean "survivor."

She was never supposed to live to see George Bush become president — that’s the first George Bush.

On an October day in 1987, she was told she had six months to live. Since then, she’s had seven major surgeries, some lasting up to 16 hours.

Because of the ravages of a rare form of abdominal cancer, many of her organs were removed. Others have been taken out in surgery, scrubbed off, the tumors on them cauterized, and the organs replaced.

Where most of us have a digestive tract that’s a long meandering mountain road, Jyoti’s is a thin, straight, short road.

At the time of her diagnosis, she was a vegetarian. She didn’t drink. She didn’t take drugs. She didn’t smoke tobacco or marijuana.

Now, all but the last still hold true.

Jyoti Robinson is one of a legion of Americans who use marijuana to offset the suffering of severe disease or injury.

There’s no ambivalence on Robinson’s part about the potency of marijuana as medicine.

It helps her with nausea and appetite (two of its most cited properties). But Robinson and her doctor also believe it helps with her body’s motility — that is, it slows down her too-brief digestive process and allows her body more time to draw nutrients from the food she eats.

This is a season of reckoning for the divisive issue of medical marijuana use.

The Sept. 5 federal raid on the home and garden of Michael and Valerie Corral, directors of the Santa Cruz-based Wo/Men’s Alliance for Medical Marijuana (WAMM), has brought Santa Cruz and the Corrals into the center on the national debate on pot and its medicinal benefits.

A federal court ruling earlier this week prohibits the government from revoking the license of doctors who prescribe marijuana. That decision has turned up the heat on an issue that’s also become an explosive theme in the fall campaign. Nevada and Arizona will vote on measures to decriminalize the medical and recreational use of marijuana.

California is one of eight states with active medical marijuana laws that directly contradict the federal government’s stance on pot.

The White House, the Drug Enforcement Agency and the Office of National Drug Control Policy (the dominion of the "drug czar") all consider marijuana an illegal and dangerous drug with no medicinal benefits.

You can get an opinion on marijuana — pro and con, mild and strong — from millions of healthy Americans. But the people with the most immediate insights on the issue are the ones who live it every day: the patients.

Their perspective is more personal and experiential than the politicians, the law enforcement officials, even the doctors arguing one or another side of the issue.

Consider the story of Suzanne Pheil, who has provided the pro-marijuana side with its most potent symbolic image yet.

Pheil, 44, suffers from post-polio syndrome and has limited use of her legs.

She was napping at the Corrals’ home when the Sept. 5 raid occurred. She says she awoke that morning with five DEA agents pointing loaded weapons at her, demanding she get out of bed.

"Surrealistic is the best way I can describe it," said Pheil of the incident that got national attention when it was reported in Time magazine earlier this week.

"I was told to stand up, and I had to tell them, ‘I can’t. Can you see my crutches over there on the floor.’

"They had me handcuffed to the bed, sitting there for an hour. I had to ask for sips of water."

Pheil had polio as an infant. About 15 years ago, while she was living in Hawaii, she was struck "like a ton of bricks" with the degenerative effects of post-polio syndrome, which is poorly understood today and nearly unheard of then.

She was told that she might have multiple sclerosis or ALS (Lou Gehrig’s Disease).

The pain was severe and constant. Pain-killing drugs were leaving her impaired and debilitated. One day, driving home from a therapy session, the mother of three pulled over to the side of the road and faced a horrifying decision.

"I was saying to myself: I can’t live in pain like this. I’m going to have to end it. Nothing’s worked.

"With all these drugs, I’m just going to decline and live in pain. I just can’t do that.

"I was actually planning how to do it. I didn’t want it to be too messy."

Finally, her obligations to her children squelched the idea of suicide. She continued to live in pain. "It’s so overwhelmingly severe, you can’t think of anything but getting out of pain. It obsesses you."

Then she began smoking pot.

"It was a dramatic improvement," she said. "I really changed my attitude about pain. Yeah, I’m in pain. But you know, it’s not the worst thing in the world. I’m going to go outside and smell the flowers and look at the sunset."

Jyoti Robinson had a similar a-ha moment.

One day, at the height of her illness, surrounded by friends and family, she was dry heaving, so sick she could barely lift her head.

Someone suggested they go to emergency room. But Jyoti didn’t want to go to the hospital.

"Then Valerie (Corral) showed up," Robinson recalled. "She rolled this joint and said, ‘Smoke this.’

"I said, ‘No, I can’t smoke anything.’"

But she did smoke it.

Within a few minutes, the immediate crisis passed and Robinson began feeling better. Her appetite returned.

"For anyone who’s been around me and seen me so sick, and seen the positive effects of medical marijuana — my mother included — seeing is believing," she said.

Harold Margolin of Santa Cruz went in for cervical fusion surgery six years ago, and the surgeon nicked his spinal chord. For six months, he couldn’t walk. Now he gets around on a cane.

Margolin still suffers from the neurological pain of the incident, mostly in his feet. He’s been given painkillers that do some good, but not without serious side effects.

For three years, life was "pretty horrible," he said, until his accountant, who was suffering from AIDS, suggested he try marijuana.

Dubious but desperate, Margolin did just that.

"And a funny thing happened," he said. "Pot is not a painkiller, per se. But what it does, it allows you to take a step back from your pain and be more objective about it. It allows life to come back into you. You lose the obsession with pain."

Before that experience, Margolin spent his time like the stereotypical pothead might spend his time: laying around the house and watching a lot of TV because the pain wouldn’t allow him to do much more.

Now that he uses pot to manage his pain — four puffs at a time, he says, between 16 and 22 puffs a day — he is able to participate on task forces and boards of directors and be a volunteer for WAMM, as well as work out three days a week.

Most people who use marijuana for medical purposes can easily be led into political discussions on the topic. They’ll point to everything from Christian fundamentalist influence in the government to the power of pharmaceutical companies as reasons for pot’s continuing prohibition.

They are reluctant to talk about marijuana’s intoxicating properties, however, insisting that using pot as medicine isn’t about getting high.

In many cases, that’s true, the idea being that people in pain are so "low" that even the strongest pot can only bring them back up to sea level.

But there’s also an awareness that any acknowledgment of pot’s psychoactive power will give ammunition to the prohibitionists.

Robert Anton Wilson has no such worries.

Wilson, who lives in Capitola, is the celebrated author of novels, screenplays and philosophical tomes, including "The Illuminatus Trilogy," "Prometheus Rising" and the "Cosmic Trigger" series — all of which question the basic premises of reality.

A protégé of Timothy Leary and a leading connoisseur of conspiracy theories, Wilson (RAW to his fans) is a genuine American freethinker. If the counterculture issued membership cards, Wilson would carry one.

Wilson, 70, also suffers from post-polio illnesses and experiences tremendous pain in his legs. His condition makes swallowing difficult and exhausting.

Pot is invaluable in managing pain, says Wilson, but the high shouldn’t be ignored.

"I do get high on pot, and that’s part of the cure," he said.

"I really think one of the reasons marijuana has proved so effective with so many different conditions is that feeling good is good for your health.

"If you feel happy — you get the giggles, you have all the symptoms of being high — that’s boosting your immune system and helping you."

Two years ago, the increasing pain in his legs led to incidents of falling down. His doctor suggested getting in touch with Valerie Corral who, as it turned out, Wilson already knew as a participant in his weekly "Finnegan’s Wake" discussion group.

Even Wilson, the 1960s counterculture icon, was doubtful about pot’s potency to stem his pain.

"My experience with pot in the past was that it magnifies sensation and speeds up consciousness," he said. "I certainly didn’t want this sensation magnified. That would just make things worse.

"But there’s a paradox about it. It magnifies good sensations, but tends to block out bad ones."

Wilson takes his marijuana in capsule form, one of the many ways WAMM prepares marijuana for patient use. There are also marijuana-laced muffins and soy milk, THC-powered rubbing alcohol for topical use, tinctures and, of course, the smokable form.

Some patients are paying close attention to the issue in Europe, where inhalers and oral sprays are being developed.

The U.S. government has long suggested alternatives to marijuana, most specifically Marinol, a synthetic compound of THC, the primary active ingredient in pot.

"It’s apples and oranges," said Joshua Schiffman, a resident at Stanford Medical School and an activist for the use of medical marijuana. "Marinol is a chemical compound of just one of the ingredients, THC. With cannabis, you get the benefits of all the organic compounds working together."

Financial concerns are also primary in the decision to take Marinol or marijuana.

A bottle of 60 Marinol capsules with 10 milligrams each of active ingredient (the strongest prescription available) can run from $800 to $900.

Marijuana is a weed that can be grown at little cost in the backyard.

"My medicine cabinet contains a huge array of different things," said Suzanne Pheil, who finds that marijuana is also helpful in reducing painful spasms in her legs. "I go with the philosophy of the least harmful things first, and then you build up.

"I’m only 44. I have a lifetime ahead of me, and these heavy painkillers and muscle relaxants and anti-depressants and anti-inflammatories, they all have huge side effects, and they’re all really hard on the liver, the kidneys and the stomach in the long run."

Pheil, like other patients I spoke to, loves the idea of self-sufficiency that cannabis provides, the idea that just like vegetables, flowers and herbs, you can grow your own medicine.

But still there’s a stigma when it comes to use of marijuana. Santa Cruz has proven to be a tolerant, even encouraging community when it comes to medicinal marijuana. That’s not necessarily the case everywhere.

Because she is such an unusually long survivor of an aggressive cancer, Jyoti Robinson is often called on by others to provide comfort or inspiration. A family member called her looking for advice. Her husband was on a heavy regime of chemotherapy and was not taking it well.

"The first thing I said was, ‘Try medical marijuana,’" said Robinson. "Man, you would have thought that I just said, ‘Get a gun and tell him to blow his brains out.’ There was dead silence.

"‘You got to be kidding,’ she said. He was in all this pain. She kept saying, ‘He’s in agony. I just can’t watch him.’ But they just wouldn’t go there."

"Nowhere in the Constitution does it say that the government should appoint a czar to supervise medical practices and prosecute doctors and patients who don’t follow his orders," said Robert Anton Wilson, who favors a California secessionist movement and, when he dies, wants his ashes blown into the face of the Drug Czar.

"Here I am, an old man without a wife, all alone," he said. "And to feel good and find myself chuckling over some weird thing is a wonderful experience."

Patients dealing with immediate issues of debilitating pain and mortality now feel they must also fear legal sanctions, despite the passage of California Proposition 215 in 1996, which legalized the medical use of marijuana.

Some fear that their homes will be seized, their children separated from them.

But the legal struggle has also given patients a will to fight and participate in the political battle, who otherwise would have little but their condition on which to dwell. From that will to fight comes hope.

"Oh, I have hope," said Robinson, who says that her home has been raided twice by law enforcement.

"I’m alive because I have hope. What must be understood about all this is that you cannot have a force without an equal and opposite reaction to that force.

"For all the depths of fear and the depths of pain you experience in this battle, the sheer joy of being here now is what you get later when you face those fears."

Contact Wallace Baine at wbaine@santa-cruz.com.

Ram Dass and medical marijuana

For 30 years, when Ram Dass has spoken, Santa Cruz has listened.

For a significant part of the West Coast cultural literati, Ram Dass has always been a font of wisdom — as a writer, spiritual leader, pilgrim in the science of consciousness and counterculture icon.

In the debate over medical marijuana, Ram Dass should have a stronger voice than usual. He’s a patient as well as an advocate.

But ironically, on an issue where words are flying hot and fast, for the 71-year-old "Be Here Now" philosopher, words come in a trickle.

In 1997 Ram Dass had a stroke that slowed but didn’t stop him. On Thursday, a documentary film on his life, "Fierce Grace," will be screened at the Rio Theatre in Santa Cruz as a fund-raiser for the Wo/Men’s Alliance for Medical Marijuana.

In interviews, Ram Dass now speaks haltingly, often laboring to articulate his ideas. That he even bothers is a testament to the man’s indomitable spirit.

"In using medical marijuana," he said by phone from his Marin County home, "I stand back from my life and stand back from the stroke and witness my soul."

The former Harvard psychology professor uses marijuana to relieve pain in his limbs and control his body’s spasms.

Santa Cruzan Harold Margolin, who uses marijuana to control severe neurological pain, says that Ram Dass was an inspiration to him in his understanding of marijuana’s medicinal power.

"The way Ram Dass says it, we operate generally on a gross level of existence," Margolin explained. "When he smokes marijuana, he is able to rise to the soul level of existence and be a witness to his pain, instead of experiencing it.

"When I heard him say it three years ago, I didn’t understand it. I thought about it a long time, and now I can take a step back and view my pain as just another thing that happens in your life."

As is his habit, Ram Dass tends to talk compassionately about people on the other side of the ideological fence.

"The people who are supporting the war against cannabis, they’re feeling tricked," Ram Dass said. "They want to see themselves as compassionate.

"But the case of Valerie and Michael (Corral) has put the government in a very anti-compassionate stance.

"Everybody in this culture has a heart, and everybody has compassion in that heart. In this case, something has to give. And people don’t want their hearts to give."

If you go

WHAT: ‘Fierce Grace: The Life and Times of Ram Dass.’ A benefit for the Wo/Men’s Alliance for Medical Marijuana. Sponsors say Ram Dass will speak after the film.

WHEN: 7 p.m. Thursday.

WHERE: The Rio Theatre, 1205 Soquel Ave., Santa Cruz.

TICKETS: $20.

DETAILS: 423-8209.

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