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Patients suffering from painful illnesses forced to sneak medicine that provides relief
By Hempology | September 8, 2007
The Providence Journal, RI
9 Sep 2007
Amanda Milkovits
FOR MORE THAN 300 RHODE ISLANDERS, MARIJUANA PROVIDES LEGAL RELIEF
The old life of Kelly Powers began to slip away two years ago.
Her husband had bought her a new motorcycle for her 31st birthday, but during the vision test for her license, Powers realized something was wrong.
She’d been getting chronic headaches and was clumsy at times. She had trouble holding a bottle for her infant daughter. Then her hands couldn’t seem to hold her baby.
It was multiple sclerosis. Within a year, the disease was claiming enough of her body that she had to give up her daycare business and retreat to her bed.
The doctors increased her medication to between 20 and 30 pills a day, drugs that left the Warwick mother feeling like a zombie. She stopped driving her son to elementary school. She couldn’t talk on the phone without losing her thoughts and drifting off. She rarely left the house. She barely left her bedroom.
Her husband, Bob, an electrician, took over the housework. Her mother and mother-in-law came over to help. Her sister came by at night to put the couple’s two young children to bed. “I felt like a bad mom. I couldn’t take care of my kids,” Powers says. “Here I am, this is my life, and everyone else is doing all the things I love.”
Her husband, whom she’d met while singing karaoke at the old Venetian Gardens in Oakland Beach, crooned the Guns N’ Roses ballad “Patience” to her on days when she struggled.
“My husband was crying because he couldn’t help me,” says Powers. “He was afraid to touch me, because I was in so much pain. I wasn’t me. I was in so much pain, overmedicated, and I was withdrawing from everybody.”
There was one woman who understood, a friend whom Powers met in a multiple-sclerosis support group. Rhonda O’Donnell was also 31 when she was diagnosed, and she had to give up her nursing career when the disease blurred her vision and eventually left her hobbled. She’d tell Powers, You can have a pity party, but you don’t have to stay there.
O’Donnell, now 44, was a dynamo in a wheelchair, lobbying at the State House for marijuana to be made legal for the chronically ill in Rhode Island. Her son Tom Angell had brainstormed the idea with a friend in his dorm room at the University of Rhode Island. Angell, who was president of Students for a Sensible Drug Policy at the time, had heard a speaker hosted by the group whose wife used marijuana to relieve her pain. He thought about his mother.
Angell and his mother lobbied for the medical-marijuana legislation, which became law in January 2006 on a one-year trial after the General Assembly overrode Governor Carcieri’s veto. The law became permanent this summer.
Powers accompanied O’Donnell when the former nurse obtained her medical marijuana card on May 1, 2006, the first day patients could be approved for the program. But Powers hadn’t been ready.
She’d seen some of her relatives struggle with drug addiction, and she didn’t want drugs in her life. Would using marijuana make her a hypocrite? Her daughter was a toddler, but her son was just starting elementary school and was old enough to know what was going on. How could she explain to him that she was using an illegal drug? What would his teachers think? Or members of her church?
THE NEW STATE LAW, called the Edward O. Hawkins and Thomas C. Slater Medical Marijuana Act, allows patients with debilitating medical conditions, such as cancer, HIV and multiple sclerosis, to possess up to 12 marijuana plants and 2.5 ounces of marijuana.
An adult without any felony drug convictions may serve as a “caregiver” for a patient, providing him or her with marijuana. A caregiver can have up to five patients, and up to 24 plants and 5 ounces of usable marijuana if they have more than one patient. A caregiver with one patient can have up to 12 plants and 2.5 ounces of marijuana.
As of early last month, 302 patients and 316 caregivers were enrolled in the program, according to the state Department of Health. A total of 149 physicians in Rhode Island have referred patients to the program. The Health Department has rejected 10 applicants as caregivers because of felony drug convictions, and a caregiver and patient have had their medical-marijuana identity cards revoked after being arrested for having dozens more plants than allowed.
The new law left some gray areas that don’t come up for patients using other prescribed medications.
Marijuana is illegal under federal law. Rhode Island doesn’t advise patients how to get marijuana, how to grow it or how to use it. So patients must grow it themselves, find a caregiver approved to grow it, or buy it off the street from drug dealers. Growers say they spend about a year cultivating the plants before they can be harvested — battling the usual gardener’s woes of pests and plants that can’t be harvested.
In his opposition to medical marijuana, Carcieri, who twice saw his vetoes of medical-marijuana legislation overridden, cited problems with legally obtaining marijuana, and law-enforcement officials and others called marijuana a “gateway drug.” Supporters of the legislation said marijuana provides immediate relief from pain without the side effects caused by prescription pain medication.
Some Rhode Island patients say they worry that the U.S. Drug Enforcement Administration may target them. Some worry about losing their jobs or their federally subsidized housing. The DEA has raided dozens of dispensaries in California, outlets that sell marijuana products to people with marijuana identity cards, and warned landlords in Los Angeles that they could face conviction and seizure of their property for renting to the dispensaries. And in Oregon, the agency subpoenaed the medical records of patients in the state’s medical-marijuana program for an investigation into marijuana growers.
But Anthony Pettigrew, agent for the New England field office of the DEA, said that while marijuana possession is against federal law, “the DEA never targets the sick and dying.” The agency is more interested in organized drug traffickers, Pettigrew said. “I’ve been here for 22 years,” he said, and “realistically, I’ve never seen anyone go to federal jail for possessing a joint.”
O’Donnell said she knew the legislation left some issues unresolved, but she believed the state needed to start somewhere. “People say, ‘Why don’t you wait?’” O’Donnell said. “That’s stupid to wait. We’d be waiting 25 years.”
The work of O’Donnell and other patients helped make Rhode Island the 11th state in the country to legalize marijuana for medical use. But the very public battle overshadows the very private decisions of hundreds of people using the drug to deal with the ravages of cancer, HIV, multiple sclerosis and other debilitating diseases.
THERE WAS NO medical-marijuana law the day Bobby Ebert drove down to Kennedy Plaza in Providence looking for someone to give him “the nod.”
Shingles, an acute viral infection, wracked his body, escorted in by complications from AIDS. He’d been diagnosed several years ago, and his life of working as a roadie in the local rock ‘n’ roll scene had ended. His body burned. He couldn’t eat. When he did, he vomited. He was taking dozens of pills, but they only dulled the pain, leaving him angry and isolated in his small apartment in Warwick. He felt like he was waiting to die.
Ebert had read online that smoking marijuana could ease the pain of AIDS. He decided to try it on his own. It didn’t take long to find a dealer. And once he smoked, he says, it didn’t take long for the illegal drug to mute his pain.
His search for marijuana became routine. He was beaten and robbed once. He saw the same thing happen to other people. He saw the police driving around. Although he was risking arrest by buying marijuana, he empathized with the officers. They had a job to do. But for him, marijuana was returning him to life, he says.
As Ebert smoked the drug, his pain eased. His appetite returned. He decided to wean himself off his pain medications — Vicodin, morphine, fentanyl — and told his doctors why: he was smoking marijuana. When the state program became law, his doctors referred him.
His family saw the changes in him. “He was miserable, constantly angry at everyone and in a lot of pain,” Ebert’s 76-year-old mother, Dolores Bishop, said last week. “I see a totally new boy. You know, he’s quite a gentleman now.”
Ebert, 48, named his new Fender Stratocaster guitar “Heather” after his former caseworker at AIDS Project Rhode Island, and he feels well enough to play sometimes. The photos and artwork from his music days are hung on the living room wall and scattered across a shelf where his pain medication used to be. He can appreciate the wild turkeys that feed on the cracked corn he scatters outside his door, and the chipmunk that comes up to drink from a bowl of water he leaves outside.
Ebert now gets his marijuana from a caregiver, but he’s afraid about what the federal government could do to patients like him who live in federally subsidized housing. In June 2005, the U.S. Supreme Court ruled that people who use or grow marijuana for medical reasons can still face federal charges even if state law allows it.
Ebert wrote this summer to Democratic U.S. Sen. Sheldon Whitehouse and U.S. Rep. James Langevin, who both wrote back their support. “I believe that patients seeking the palliative benefits of marijuana, while abiding by legal regulations governing state-sponsored medical-marijuana use, should not have to fear federal prosecution,” Whitehouse said in a letter Ebert received last month.
Langevin had voted for an amendment that would have prohibited federal money from being used to override state medical-marijuana laws. Langevin’s letter came this week, as Ebert was battling another round of shingles. His illness scares him. “I know what I’m going to die of,” he says.
But while he has time, Ebert says he wants to convince other people with HIV how medical marijuana can help them.
“Before this, I was angry. I hated life,” Ebert said. “Now, I love life, and I love to help people — to show them what I’ve gone through and say ‘don’t take the same roads.’ There are a lot of people who are afraid to come forward, so I’ll speak for them.”
DENIS DUBOIS WAS in his court-ordered rehab program when he got his medical-marijuana identity card last year. That made for some interesting conversations with his counselor.
“They didn’t know what to do with me, because I’m there for substance abuse, but what I’m abusing is my medication,” Dubois said.
He’d been arrested twice by Woonsocket police for growing marijuana, in 2000 and 2005, before the state legalized medical marijuana. He’d even spent two weeks in jail. Dubois, 35, the lead singer for a heavy-metal rock band, says he risked breaking the law because marijuana was the only thing that relieved his back pain.
He was born with a hairline fracture in his lower spine, a problem that went undetected until 1999, a month before his wedding. He was getting ready for work at his parent’s travel agency and collapsed in pain. The doctors told him he had severe degenerative disc disease, and Dubois says, “it was made clear to me that it will get worse as I get older.”
After surgeries and the insertion of titanium rods in his spine, the pain became so debilitating that Dubois was ruled disabled in 2000, he says. His prescription painkillers only dulled the stabbing pain and left him so exhausted he could barely move. It was around that time, he says, he began smoking marijuana for relief.
One hot afternoon, Dubois stood in a small bedroom of his caregiver’s large Colonial in Woonsocket and checked the homemade growing system for his indoor marijuana garden. Small marijuana plants peeked up over pots. An enclosed area had taller plants growing under high-pressure sodium lights meant to simulate 18 hours of sunlight.
His caregiver, Emelie Archibald, 51, picked up Marijuana Horticulture, a how-to book they’ve been using. Dubois is a friend of the family, and when he needed a place to live, Archibald welcomed him in.
She calls him “the son I never had,” and having seen his suffering, she has become an advocate for medical marijuana. At a meeting for the American Association of Retired Persons, one of the members asked Archibald how she knew that Dubois wasn’t just selling pot on the street. Archibald said she shot back, “Would you sell your high-blood pressure medication on the street?”
Dubois touched the leaves like a careful gardener and talked about the methods he’s read about. Other marijuana growers were giving him advice on how to increase the health and potency of his plants.
Dubois says he wants to share seeds and cuttings and extra harvest with other patients. “There are many patients who can’t grow and don’t even have a caregiver,” he says. “You need to know somebody who can do this, who has the time and the money.”
Medical marijuana, he says, has helped him regain his old life. The band he sings with, Rat Poison, recently was booked for regular gigs at a bar in Weymouth, Mass. He also credits marijuana with getting him off “heavy-hitting” pain medications, such as Oxycodone.
He says his drug arrests made him feel like a low-life criminal. His illnesses cost him his marriage, his home and his ability to work, Dubois says. Now, marijuana is giving him a sense of purpose, of being able to help others.
He cited the Declaration of Independence’s reference to “Life, Liberty and the Pursuit of Happiness.”
“To me, happiness is living without pain,” Dubois says. “And if marijuana can do that, then who the hell are they to say no?”
THE SUN WAS just a pale glimmer in the sky when Kelly Powers walked gingerly up the attic stairs to her corner by the windows. Her husband had left for work. The children were still sleeping. The early morning was hers.
She picked up a glass jar of marijuana and loaded a small amount into a glass pipe that she’d been given for her 33rd birthday. She flicked a lighter and lit the bowl, inhaling. She held her breath for a few beats and exhaled, sending small plumes of smoke into the attic air.
The attic, with its bare boards and exposed walls, has become her sanctuary. She used to be afraid to come up here because it is dark and empty and made her think about spirits in the old house. Now, she comes up here in the early morning to smoke, write poetry and think.
She watched the birds land on the telephone wires. She sipped coffee from an Oakland Raiders mug and picked up a red notebook. She penciled drawings of an angel and the Virgin Mary, ideas for a tattoo. “I relate to her. She was so strong to deal with what she had to deal with,” Powers said.
On July 7, 2006, with support from her team of doctors, Powers decided to get her medical-marijuana identity card. Only three weeks before, she had been writing poems about pain and loss:
I am scared of my future. How can I be a good wife?
Before getting her card, she’d tried marijuana during a camping trip with her husband. Her muscles had relaxed and the pain had receded. Bob Powers and O’Donnell urged her to join the program. After she did, Powers says she was able to give up much of her dependence on the painkillers that were leaving her groggy and exhausted. Even when she became legal in the eyes of the state, Powers needed the reassurance of her faith. She had talked with her pastor at the First Lutheran Church in East Greenwich about having multiple sclerosis and about her anger at God. Powers trusted her enough to tell her she was smoking marijuana to ease the pain from the disease. Her pastor understood and supported her, Powers says.
When Powers got up the courage to testify at the State House that the law should be permanent, her church held a prayer circle for her. After her testimony appeared on TV news, churchgoers thanked her for her courage, she says. Some of them have cancer and they may end up benefiting from the law, she says.
“I felt like maybe that’s my purpose,” Powers says. “I got involved in this to help people. I found the strength through God to fight for what I believe in.”
The drug won’t stop the onset of her disease. She’s also been diagnosed with fibromyalgia, a chronic illness with symptoms of widespread musculoskeletal pain. Her memory is slipping, she says, which frightens her. She takes hundreds of pictures of everyday moments to help her remember. She plays memory games and trivia with her son, who told her one day, “You’re lucky I’m very smart, because when you forget things, I can teach you.”
On other days, she feels almost like her old self. Bob bought a karaoke system, which they take with them on getaways organized by the multiple sclerosis support group, and the family bought a new motor home for camping.
During one get-away, Powers took a short walk and just sat for a while, breathing in the quiet of the trees. “When you’re so drugged up on things, you can’t think. And when you can’t think about where your life is going, you give up hope,” she says. “I’ve got my hope back.”
THE MIDSUMMER afternoon was heating up out at the pool behind Emelie Archibald’s house. The Rhode Island Patient Advocacy Coalition was throwing a celebration for getting a permanent law passed. Archibald had made marijuana brownies for the occasion. A sign next the brownies said “Medical Marijuana Patients Only.”
Kelly Powers took photographs of people at the party — Bobby Ebert, looking frail but happy, a smiling Rhonda O’Donnell, co-sponsor of the law Rep. Thomas Slater, D-Providence, giving a speech, Denis Dubois jamming on a guitar at the end of the pool. Powers noticed a tattoo of a face in a cloud on Dubois’ right bicep, and she told him that it reminded her of a cloud she’d seen one morning while praying for a sign that things would be OK. To her, the cloud looked like the face of Jesus.
As one patient passed a joint to another, Dubois couldn’t help smiling — he’d gone to jail for this, he recalled later. Archibald called it “the first legal pot party in the state.”
The woman who’d started it all had made her way up the stairs to the backyard. O’Donnell will never be able to return to nursing, a job she loved. But she says her efforts for medical marijuana will help hundreds of people with multiple sclerosis, cancer, HIV and other chronic debilitating diseases live with less pain — and without the lethargy and exhaustion caused by prescription medication.
She had been the first to apply for the medical-marijuana identity card. She and her 76-year-old former mother-in-law went to a head shop in Warwick to buy a glass pipe, where a clerk had to show O’Donnell how to use it. Two puffs on a pipe were all it took to relieve the burning pain in her limbs.
She wished her father could have found the same relief before he died.
Walter O’Leary had been diagnosed with melanoma when he was just a few years older than she is now. He died in 1980 when he was 50, and she was only 18. She learned recently that her father had tried marijuana to help relieve his pain.
“My dad was the greatest guy, law-abiding, a father, and he had to sneak this because what if he got arrested,” O’Donnell said. “How many people in these last 27 years have had to sneak this because they could get arrested? How many have wanted to do it, but it was illegal?”
The law was too late for her beloved father. “All these people had to worry about being illegal,” she said. “And now, they don’t.”
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