Strains of an Italian opera wafted into Mark Tucci’s hospital room as he sat up in bed and tried to swallow his first bite of solid food in weeks. It was March 2000, and for most of the month, the only thing that had touched his lips was a wet sponge bearing water. Finally, the first rumblings of hunger were returning.
Tucci had been diagnosed with multiple sclerosis in 1996; this time, though, he was in the hospital for a rotator-cuff injury. While there, he picked up a nasty bacterial infection that exacerbated his MS. His pancreas started to shut down. The rest of his body soon followed.
Initially, the doctors couldn’t figure out what was happening. Complicating their diagnosis were the 17 different pills Tucci was popping each day to fend off the MS symptoms and the side effects of the drugs themselves. For nearly a month, Tucci lay in bed, spaced out and crumpled up like a rag doll, unable to distinguish between the mountains outside his window and the air ducts on the hospital roof. When the doctors couldn’t nail down the cause of his symptoms, they took him off all his meds and started over.
The night his appetite returned, Tucci says, he listened to the music emanating from the next room and thought about the patient inside, dying of bone cancer. He tried to imagine what was going through the man’s head as he heard his last Italian aria ever. But Tucci’s thoughts kept returning to his own family — especially his sons, who were 9 and 10 at the time, and their mother, Cathy, who was herself dying of leukemia.
“I kept thinking, What the hell did we do wrong, God?” Tucci remembers. “How am I ever going to raise these two boys alone?”
Yet, somehow, Tucci did just that — and more. Today, he takes care of most of his own needs: He cooks, cleans, bathes, drives and shops for himself and stays active in his church and his community. A few years ago, he wrote and published a children’s book, Mollytime Rabbit: The Finest Pie Maker in the Woods. Last year, he launched a nonprofit group called Silent Heat, which provides free firewood, fire extinguishers and safety boxes to low-income Vermonters during the winter. In February, the legislature honored Tucci with a House resolution for those efforts.
Tucci also grows his own medicinal cannabis. One of the first to sign up on Vermont’s medical marijuana registry, he smokes about four joints daily to ease his pain, relieve his muscle spasms, calm his nerves and quiet his other symptoms. He insists that, without it, he would have managed none of his accomplishments of the last five years.
When the law was being debated six years ago, Tucci became the poster child for Vermont’s medical marijuana movement. Certainly, other Vermonters offered compelling and often heart-wrenching testimony in support of that bill. But many who were involved in the effort credit Tucci’s blunt, no-bullshit style for winning over skeptical lawmakers.
Tucci bristled at the dumb jokes about Cheech and Chong movies and the munchies, as well as suggestions that the bill was some kind of stoner scheme to achieve across-the-board pot legalization. This was about real patients in serious pain, he explained to lawmakers, who were being denied an effective and proven medicine.
After the law passed in 2004, Tucci became a behind-the-scenes guru to scores of Vermonters who could now legally grow and puff the stuff. Over the years, he’s received dozens of phone calls, emails and the occasional unexpected knock on his door from patients or caregivers who’ve received their marijuana registry cards in the mail but don’t know what to do next.
“Some dude with 21 lesions on his brain is suddenly getting hold of me,” Tucci remembers. “Or I’ll get a call from somebody my age who lived through a different ’60s than I did ... That’s how God works.”
Legally, Tucci could not provide these callers with weed, plants or even starter seeds — Vermont law is silent on how registry patients are supposed to find them. But he could share his growing know-how. So, after repeated requests for advice, Tucci wrote a book on the subject: The Patient’s Simple Guide to Growing Medical Marijuana. The concise how-to guide explains in straightforward, unscientific language how patients can cultivate their own herb indoors. Self-published in 2006, it was banned by eBay within an hour of being offered there. (It’s still available for $12.50 at patientssimpleguide.com.)
Tucci’s book had a more positive consequence: It helped lawmakers understand the difficulties of growing pot indoors, and why cannabis patients need more than just one mature plant and two immature ones — then Vermont’s legal limit — to meet their medicinal needs. In 2007, the legislature expanded the law to let patients raise two mature plants and seven immature ones. It also added to the list more ailments that qualify for treatment with medical marijuana.
Today, Vermont is one of 13 states that permit medical marijuana use; just last week, two more legislatures — in Minnesota and New Hampshire — approved similar measures. According to the Vermont State Police, the program has been an unqualified success. Except for one arrest in October 2008, of a registry member in Stowe who was allegedly growing too many plants, none of the sinister scenarios initially envisioned by law enforcement have come to pass. The state has seen no spikes in larcenies, assaults, car accidents, teen drug use or organized crime.
Currently, the registry lists 139 patients and 26 caregivers, but Tucci doesn’t refer to them as a “community.” That word implies a group of people who know each other, communicate regularly and have a mutually supportive relationship — they don’t. For understandable reasons, patients’ names, medical conditions and other identifying information are kept confidential by the Vermont State Police, which administers the program.
Furthermore, Vermont’s medical cannabis treatments occur behind closed doors with little, if any, medical guidance, horticultural support or quality control.
Tucci supports keeping things private. But he is also in favor of allowing patients to communicate — anonymously, if necessary — so they can seek advice, share growing tips and make suggestions on the best strains, aka “cultivars,” for treating their specific ailments.
Equally important, Tucci argues, is the fact that Vermont’s medical researchers and health-care providers are missing an opportunity to learn from patients like him, to study which cultivars contain which cannabinoids — the active ingredients in marijuana, of which THC is but one of many — and to better understand how they function physiologically. Only then, Tucci says, will cannabis lose its taint of illegitimacy and evolve from being a “drug” to a “medicine.”
Tucci meets me at a convenience store on Route 7 in southern Vermont. He drives up, window down and music playing, wearing a pair of dark sunglasses and a warm smile. I follow him down a dirt road back to his house, a double-wide trailer tucked in a wooded meadow.
Tucci parks, swings his legs out from behind the steering wheel, and grabs an aluminum crutch from the back seat. He offers me a firm handshake before walking up the long ramp to the front door. Tucci will never be a sprinter, but he gets around OK. It’s hard to imagine that just a few years ago, he says, he couldn’t even lift a prescription pill bottle.
Tucci is 52, with bright blue eyes, a full head of gray hair and a “feather” of white whiskers under his lower lip. He’s wearing a VCAM T-shirt, black-rimmed glasses, white Reeboks and a green pair of Jets pajama bottoms. When he smiles, which he does easily, he bears a slight resemblance to actor Bruce Dern.
On the day of our interview, Tucci has just moved out of his farmhouse in Manchester, where he lived for many years and raised his sons. They’re grown now and out of the house, and Tucci’s disability payments didn’t cover all the expenses on the property.
“I tried to do the roommate thing,” he explains, “but when you’re growing cannabis, it’s hard to find the right kind of person.”
For obvious reasons, Tucci wants his new location kept secret. It’s not that he fears the police or federal drug enforcement agents, though, technically, marijuana cultivation is still a federal crime. Earlier this year, U.S. Attorney General Eric Holder indicated that the Justice Department won’t pursue prosecutions for conduct permissible under state law.
Actually, Tucci is more afraid of his fellow Vermonters. “I know three people right now who would knock me on the head, steal me blind and rip off my weed because I’m a cripple,” he says.
Those fears are well founded. A few years ago, Tucci was in New Orleans at a drug-policy reform conference when a couple of teenagers kicked in his back door and stole his grow lamps, ballast and plants, including several strains he’d been developing for nearly two years. Tucci didn’t publicize the break-in because, at the time, the legislature was debating an expansion of the medical marijuana law. He feared the negative publicity would scuttle that effort. Still, he called the cops, against the advice of a lobbyist friend.
“I said to her, ‘Why do you think I drive all the way up [to Montpelier], puking my brains out on the side of the road and waiting three hours to testify for just five minutes?’” he recalls. “I did this so that if I ever got robbed, the police would protect and serve.”
The story didn’t end as badly as it started. The teens were eventually arrested, and Tucci called his insurance agent to report his losses. The company not only reimbursed him for the $600 in stolen equipment, but asked him how much “product” he had lost and its estimated market value. About $400 an ounce, he told them. A few days later, the insurance company cut him a check, and Tucci’s grow room was soon up and running again.
“One of my claims to fame is that I, Mark Tucci, set the price of marijuana in the State of Vermont for the insurance industry,” he says proudly.
Seated on an old couch in his new living room, Tucci palms a small Tupperware container full of dark green stalks. Even before he opens it, I can smell the pungent herb he harvested a few days earlier. He opens the container and pulls out a fat, spongy nugget the size of a goose egg. It’s soft and sticky, with fuzzy red hairs and crystals that glisten like tinsel on a tiny Christmas tree. Suffice it to say, it’s as picture perfect as any High Times centerfold.
“Afghani skunk,” he proclaims. “This is the most consistent, thank-Jesus-it’s-there-killing-pain medicine I’ve got.”
Tucci sparks up a fat joint, takes a few drags and ticks off some of the other strains he’s raised — White Widow, Blueberry, Vulcan, Buddha — and how they work on his symptoms. Indigo does really well for muscle spasms, he says, but White Widow is better for pain.
“Buddha is really, really nice for that thumping pain,” he notes. “It goes right to the base of your spine.”
Tucci wasn’t always a pot connoisseur, or even a regular smoker. He was born outside of Boston and lived there until he was 5, when his father died. The family moved up to Mt. Tabor, then Danby, then Manchester, where Tucci attended Burr & Burton Academy. In those days, alcohol was the socially acceptable drug of choice.
“Back then, weed was ‘dope,’ but ‘dope’ was also heroin,” he says. In his town, he explains, teenagers could drink all the booze they wanted and it would be laughed off. “But God help you if you smoked pot.”
So Tucci chose booze, which went from being a pastime to an addiction. He eventually dropped out of high school and spent some time working as a chef, then later as a house painter. On August 11, 1991, he quit alcohol and hasn’t touched a drop since.
For years, Tucci did fine without chemical enhancements. The hard physical labor of scrambling up 40-foot ladders and painting houses kept him strong, lean and sober. That is, until one fateful day in 1994, when, he says, his left leg sort of just “dropped.” Suddenly, he felt an unbelievable fatigue come over him, as if someone had landed on his back. He blacked out.
Initially, the doctors blamed his condition on past drug and alcohol use, and for two years his condition deteriorated. Finally, Tucci ended up in Deaconess Hospital in Boston, where, within 10 minutes, an astute doctor pinpointed his symptoms as MS. Tucci was put on a regimen of different meds — everything from interferon to methadone.
But the prescription meds, especially the opiates, left him weak and spaced out, he says. At the time, doctors told him that within 10 years, he’d be in an assisted-living facility. Depressed, Tucci decided to get high.
“I figured, hell, I’ll just smoke to relax my mind and feel better about my crappy lot in life,” he recalls, “because the older you are with MS, the more apt you are to get crippled and feel like shit.”
One day, Tucci visited a friend who offered him some “chocolate sativa,” a high-potency variety he found as tasty as its name. Tucci smoked half a joint of the stuff and ended up flat on his back for two hours — in a good way. Shortly thereafter, a friend of a friend, whom he refers to in his book as “The Man,” brought him some more, then convinced Tucci he could grow it himself.
The encounters changed his attitude about his MS forever. As he puts it, “Give a man a fish, and you feed him for a day. But teach a man to fish…”
In the years after his 2000 hospitalization, Tucci developed a budding interest in Vermont’s medical marijuana movement — not just for his own benefit, but for the many other patients he met along the way who were dealing with similar or worse medical conditions.
“Oftentimes, patients are really sick and they don’t have the time, the energy or a way to connect with other people,” explains Nancy Lynch, a friend of Tucci’s who worked as an activist for the Marijuana Policy Project. “Mark has put himself out there in a real unofficial way to give advice.
“I’m not saying that [the law] never would have passed, but it wouldn’t have passed in the time frame that it did without his activism and initiative,” she adds. “I so love that guy. He’s a rock star in my mind.”
Winooski City Councilor Jodi Harrington grew up with Tucci in Manchester and has stayed friends with him ever since.
“Mark is one of those guys who just makes things happen,” Harrington says. “That’s why he’s been such an inspiration to all the people around him.”
Years ago, Harrington’s brother-in law, Paul Wilson, was diagnosed with lung cancer. Tucci advised him on medical marijuana and served as what Harrington calls his “God-man, spiritual comfort and role model” to get him through his bouts with chemotherapy.
Harrington and Tucci also spent a lot of time together during the medical marijuana campaign. He’d often stay at her house in Winooski and they’d drive together to Montpelier. She recalls one time running into George McNeil, a Danby Republican who knew both Tucci and Wilson. After McNeil and Tucci did some behind-the-scenes commiserating, the medical marijuana bill was voted out of committee with the necessary support of several key Republicans.
“It wasn’t going to win [McNeil] any favors as chairman of the Rutland County Republican Party,” Harrington recalls. “But it was impressive, because here were these two people he knew who weren’t just wild-eyed and crazy drug people. They had these real medical issues.”
For his part, Tucci says he always tried to be matter-of-fact when speaking to legislators. One time, while Howard Dean — a strong opponent of the medical marijuana bill — was still governor, Tucci went outside during a committee break to take a few hits. Leaning against the governor’s car, he remembers looking up and seeing a woman, a cancer patient who was also scheduled to speak that afternoon, vomiting behind a tree. She, too, hid herself as she lit a joint, then went back inside to testify.
Tucci shakes his head in disgust. “I thought to myself, How freaking ridiculous is this?”
It’s worth noting that the medical marijuana bill didn’t become law under Dean, a Democrat and a physician. In fact, it was widely assumed that Dean would veto the bill if it passed. At the time, Dr. Joe McSherry, a neurologist at Fletcher Allen Health Care and a PhD at UVM’s School of Medicine, was one of two doctors who served with Tucci on a legislative study committee charged with exploring the medical marijuana issue.
McSherry, who later wrote the forward to Tucci’s book, says he knows other doctors who view pot as dangerous and addictive, and would never recommend it to their patients, regardless of their condition.
“It’s ignorance. If they knew what I know, they wouldn’t say stupid stuff like that,” McSherry says with a chuckle. From a neurological standpoint, he adds, “I don’t see a downside to it, except that it’s illegal.”
At the time, one of the key selling points of medical cannabis was its known power to relieve symptoms associated with debilitating and deadly diseases, including pain, nausea, vomiting and chronic wasting. But, says McSherry, studies since performed elsewhere in the world have shown promising results when it comes to treating the underlying illnesses. “The reason Tucci’s multiple sclerosis hasn’t progressed a whole lot in the last several years is probably because he’s smoking a whole lot,” McSherry suggests. “It treats the disease as well as the symptoms.”
McSherry has testified before the Vermont Supreme Court on medical marijuana and discusses its use in pain management with medical residents during grand rounds at UVM. He says he’s tried to interest the cancer center in promising research that involves using cannabinoids to shrink tumors.
Thus far, however, he hasn’t drummed up much interest. As he puts it, “Doctors have no idea how to prescribe it because, of course, they don’t teach it in medical school ... What we know is milligrams per pill.”
Bobby Sand is Windsor County’s state’s attorney and an outspoken proponent of moving marijuana out of the criminal justice system and into the realm of public health. Sand isn’t surprised that Vermont’s medical researchers don’t want to be in the same room with Tucci or other registry patients who are violating federal law. For years, he says, the feds have maintained “a stranglehold” on marijuana research, and even the most progressive members of Congress, including Vermont’s own delegation, have done little to change that.
“There’s a pretty significant body of evidence that says that for some people, it provides real medical value,” Sand says. “It’s a crime that we’re not allowing our doctors and researchers to explore that more fully.”
About twice a week, the nursing home loads Higgins into a van and drives him to the rural Chittenden County home of “Willie” and “Tessa” — a stressful and time-consuming chore, as Higgins is confined to a wheelchair and doesn’t travel well. There Willie, who is Higgins’ registered marijuana caregiver, administers Higgins’ drug of choice in long drags.
Higgins can’t bring it back to the nursing home, though. Although he’s on the marijuana registry, Starr Farm refuses to allow him to smoke on the premises for fear of losing its federal funding. In May 2006, a staffer found a joint in his belongings and called the police, who confiscated it. Higgins wasn’t charged.
Three years after Seven Days first interviewed him, Higgins’ condition has barely changed. He’s still pale and gaunt, with hollow, sunken eyes, waxy skin and limbs that are withered and curled from his disease. Though Tessa insists he’s gained some weight in recent years and is faring better than before — Willie and Tessa also give him bee-venom therapy — it’s hard to see much improvement. He still cannot walk and seems largely oblivious to his surroundings.
“I have no idea whether he’s gone to a place where none of us can possibly relate to, in order to deal with what his life is like,” Tessa admits. “Maybe he’s gone crazy. I don’t know.”
Tucci views Higgins’ situation as nothing short of criminal.
“Dude, five years ago I was like Shayne, laying in a ball, my sister picking out my pills for me, with a urinal two inches from the bed,” he says. “Within a year and a half, I could walk up a flight of stairs.”
This winter, Tucci plans to spend several months in the “Emerald Triangle,” an area of northern California known for growing some of the world’s most potent weed. In recent years, it’s become a mecca for patients like Tucci who want to learn more about treating their ailments. By the time he returns, he’s hoping the Obama administration will have turned a corner on this issue, as it did with stem-cell experimentation, and opened to door to domestic marijuana research.
“We ought to be doing this. Why the hell not?” says Tucci. “We’re doing it anyway, underground and in the dark.”
See Ken Picard discuss this story on "Inside Seven Days," which airs on Channel 16, RETN, Thursday, May 7 at 8 p.m. Click here to watch the interview on the web.