Chronic pain at the base of Barbara MacKenzie's spine, the consequence of degenerative disc disease, makes sitting upright uncomfortable. On a Friday morning in early August, she was on the floor, propped up by her elbows on the beige carpet in the front room of her Normal Heights bungalow. As MacKenzie talked, she ran her hand along the carpet's surface, lifting up a light layer of dog hair. Sativa, a chubby golden retriever, waddled over and settled down near MacKenzie; Sensimilla, a mix of husky and German shepherd, almost too large for the small room, opted for some shade in the garden outside. A couple of weeks later, both dogs-“the puppies,” MacKenzie calls them-moved in with a friend of hers in Alpine, where they have plenty of outdoor space and the human companionship they crave. MacKenzie, on her own, doesn't have the time to give them the attention they're used to; there's too much she has to accomplish and too little time.
Two months ago, on the morning of July 12, MacKenzie found Steve McWilliams, the longtime medical-marijuana activist and her partner of seven years, dead from an intentional drug overdose. A nearly three-year-long court battle stemming from his October 2002 arrest by the DEA had taken its toll on McWilliams. A letter he left behind, tucked under his favorite denim jacket on his dresser, described the pain he was in. The bond that kept him out of prison while his case made its way through the court system came with a condition prohibiting him from using cannabis, the drug he'd come to rely on for persistent migraines-“99 on a pain scale of one to 100,” MacKenzie said-the result of head trauma he suffered in a 1992 motorcycle accident.
A week before his death, McWilliams, who had just turned 51, accidentally took a near-lethal dose of methadone, a synthetic opiate his neurologist had prescribed for his migraines. That experience left the intelligent, charismatic McWilliams feeling confused, disoriented and in worse pain than before.
Still, no one who knew McWilliams saw this coming, including MacKenzie. He was one of San Diego's better-known political activists; he garnered respect even from those who didn't necessarily agree with him.
With his suicide, MacKenzie lost her partner, the man whose reason for being-to make medical marijuana accessible to those who truly need it-became her reason for being, too. McWilliams, because of his brain injury, lived in the moment, his actions driven by a sense of immediacy-a trait common for people recovering from traumatic brain injuries, said MacKenzie, who worked for two decades as a psychiatric nurse before she met McWilliams. When he had an idea, he acted on it. She now feels similar pressure.
“I know how long the political process takes,” MacKenzie said, “and I know how resistant people can be to changing a [federal] law that has been on the books for so long that it is so embedded in our society... and maybe that's why I feel pushed.”
And a little overwhelmed. There are practical matters that MacKenzie now has to face-alimony from her 1989 divorce runs out in December, and she won't be eligible for Social Security for three years. With McWilliams' small monthly income, the two were able to make rent and pay for basic living expenses. Now MacKenzie doubts she'll be able to stay where she is. The letter McWilliams' left behind didn't provide her with much of a roadmap. This isn't the way things were supposed to end up.
MacKenzie met McWilliams in October of 1997 when she-literally-came crawling to his doorstep. She'd taken her son to the movies two days prior, his birthday request. It would be the first time they went to the movies together since she'd injured her back a decade prior. She made it through the film, but could barely move the next day.
Earlier that week she'd read a story in the North County Times, a profile of McWilliams that talked about the small collective marijuana garden he had going in Valley Center. It was a year after Prop. 215 had passed, making cannabis legal in California for anyone with a doctor's recommendation.
MacKenzie was living in Escondido, severely overweight, unemployed and barely mobile. She had injured her back in August 1987 when she bent over to empty her son's backyard swimming pool. A regimen of physical therapy recommended by her doctor only exacerbated the injury, which was further compounded by early-onset osteoporosis. MacKenzie had lost six babies before her son was born two months premature. While on bed-rest, she had been given the steroid betamethazone for four weeks, ostensibly to help the baby's lungs develop. Betamethazone, she later found out, can linger in your body for years and studies have found that steroids can cause osteoporosis. Her son was born able to breathe but later had to have a metal rod inserted into his spine.
Before MacKenzie went to see McWilliams, she consulted with her doctor at the VA hospital-MacKenzie was a nurse in the Air Force for two years-and showed him the North County Times story. He told her pot was worth a try but that as a government employee, he couldn't be the one to recommend it. He suggested she call McWilliams and see what he could do for her.
“I got home around 1 or 1:30, called up Steve and he says, ‘Can you come by around 3:30?'” MacKenzie remembers. “I dropped my son off at the library in Valley Center and trucked on out there and, literally, I had to crawl up the steps of his trailer because I couldn't lift my legs. I lay down on the floor of his trailer and I was like, ‘Here I am.'”
McWilliams gave her some marijuana and showed her the small greenhouse where he housed his plants. He was leaving for Santa Cruz the next day and needed someone to check in on the plants. “I said, ‘OK, sure,'” MacKenzie said. “We agreed we were going to work together right from the very beginning.... It was right what I wanted to be doing-‘Sure, I'll help you grow these plants,' so that's how we met, and that's how it started.”
Over the next year, MacKenzie dropped 110 pounds. Marijuana, if used correctly, can actually help regulate your appetite, she said, and with her back pain under control, she was able to get up and do things, even get a part-time job.
McWilliams moved to Hillcrest in 1998 and she followed a few months later. A relationship he was in fell apart and he ditched his trailer and moved in with MacKenzie. The two began to focus their attention on getting the city to put together a medical-marijuana task force with the goal of drawing up guidelines that both law enforcement and patients could follow. A defect in Prop. 215 was that it said nothing about how much marijuana a patient could possess nor how to legally obtain it, forcing the police to improvise.
So they started to lobby the San Diego City Council, using the public-comment period at the beginning of Tuesday council meetings when anyone could speak on any topic for up to five minutes. MacKenzie's since looked at meeting minutes and figures McWilliams made more than 150 appearances before the City Council while she got in about half that many. Even two weeks before his death, McWilliams was again before the City Council, this time encouraging them to set aside some public land where medical-marijuana patients could set up a secure public garden rather than rely on costly dispensaries or risk their own safety by growing in their backyard. Since McWilliams' death MacKenzie's already been to the City Council with the same message.
Back in 1999, other medical-marijuana patients came up to speak, too, asking the City Council to docket a discussion about organizing a task force. One of them was a young man with mixed connective tissue disorder, an autoimmune disease that affects virtually every part of the body. Cannabis helped him tolerate some of the more potent medications he relied on. Though severly ill, he spoke at one meeting and died a short time later. On the anniversary of his death, McWilliams got a copy of the videotape from that meeting and played it for the council with MacKenzie narrating. “I said he died a year ago today,” she remembers. “George Stevens was on the council at the time and he says, ‘I don't want to be a part of anyone dying because of what we aren't doing. And so [mayor] Susan Golding agreed to put [the medical marijuana task force] on the agenda.”
The task force began meeting in June 2001. When MacKenzie and McWilliams felt the group's work wasn't getting support from certain members of the City Council, they put together a mock awards show based on The Wizard of Oz. Mayor Dick Murphy, who opposed implementing medical-marijuana guidelines, got the Tin Man award “because he didn't have a heart,” MacKenzie said. To Brian Maienschein went the Cowardly Lion award, for not “having the courage to think independently” and the Straw Man award, “I believe was for Jim Madaffer,” she said, “in order to point out the need to understand that California's law was upheld... by the state constitution.”
The two ran a medical-marijuana collective, Shelter from the Storm, for three years, helping people who didn't have the resources to grow their own marijuana. MacKenzie made cannabis butter for patients who didn't want to smoke, and cannabis-based ointment for treatment of joint pain and arthritis. In 2002 they opened the Stir it Up Cannabis Coffeehouse just off Adams Avenue in Normal Heights where they sold Shelter from the Storm T-shirts and coffee mugs, provided free coffee and tea and informational material, and gave people a safe place to smoke marijuana. MacKenzie emphasizes that they neither sold nor distributed marijuana at the coffeehouse-it was strictly BYOB: bring your own bud.
The coffeehouse was open less than a year when DEA agents raided their home on Sept. 24, 2002. Along with the plants, they grabbed the Shelter from the Storm banner as their last item-their coup, MacKenzie said. McWilliams was arrested three weeks later and charged under federal law with illegally cultivating 25 marijuana plants, to which he pleaded guilty. Though news reports have said McWilliams taunted the DEA by handing out marijuana at City Hall a week before the raid, MacKenzie wants to set the record straight: even surveillance cameras the DEA had trained on McWilliams that day show no such actions and he was never charged with distribution.
Federal law will always trump state law, but there's a sad irony in the fact that three months after his arrest, the City Council approved guidelines that would have put McWilliams' 25 plants well within local law-primary caregivers are allowed 24 plants per patient and MacKenzie claimed half those plants as her own. But she was never arrested nor prosecuted. When it comes to medical-marijuana cases, very few women ever are, she pointed out. “Thus women are kept in their place as unmentionables,” she'd later tell a writer for the magazine High Times, “and males who act outside the cultural norm are labeled criminal and can be punished.”
MacKenzie was punished, however, when federal court Judge Rueben Brooks, as a condition of McWilliams' bond, ordered that MacKenzie, too, be barred from using cannabis. The rationale was that since McWilliams had to submit to weekly drug tests and since the two lived together, any presence of cannabis posed a problem. The two, then, relied largely on Marinol, a costly synthetic form of THC, the active ingredient in pot, used for pain control. Their Marinol bills combined ran upwards of $20,000 a month, a tab picked up by insurance.
In December 2003, the 9th Circuit Court of Appeals ruled in favor of Angel Raich, the Northern California woman who sued the Department of Justice to prevent the feds from having jurisdiction in states where medical marijuana is legal. The case would later be heard by the U.S. Supreme Court, but until then, at least one other California medical-marijuana patient imprisoned under federal charges was released pending the court's decision. Another patient was permitted by a federal district court judge to use cannabis in the interim.
McWilliams petitioned Brooks, requesting that he be allowed to use cannabis pending the outcome of the Supreme Court's decision in the Raich case (the court ultimately ruled this past June that the federal government can arrest and prosecute medical-marijuana patients regardless of state law). Brooks denied the petition that would have given McWilliams access to cannabis for more than a year.
MacKenzie stops short of blaming the judge for McWilliams' death, though McWilliams didn't forget Brooks in his suicide note. “Judge Reuben Brooks is a wretched, evil little gnome,” he wrote, a remark that still elicits a laugh from MacKenzie.
The couple kept a microwave-size cardboard box full of tried-and-failed painkillers and their accompanying pharmacy paperwork under a table in their kitchen. They planned to turn the pills and paperwork into a piece of art to drive home the efficacy of cannabis over pharmaceuticals.
MacKenzie wonders if it was from this box that McWilliams pulled together a lethal combination of pills. She still doesn't know what exactly he took before he died; the medical examiner has yet to release a toxicology report.
The same day I joined MacKenzie on the floor, she received a phone call from McWilliams' attorney, David Zugman, telling her that a federal judge-not Brooks-had released her from all conditions of McWilliams' bond. “Do you know what that means?” she asked with a smile that suggested her life was about to change a little bit for the better. She slowly got to her feet, walked around the corner and returned with a glass pipe, a gift she gave McWilliams last Christmas to show her confidence that he'd prevail in his appeal. Three years without cannabis had compromised MacKenzie's mobility-a fall this past April put her in bed until June.
A couple more weeks would pass after Zugman's phone call before MacKenzie was able to find a caregiver who could provide her with cannabis until she's able to grow her own. It's the end of the growing season and she's only able to secure a small amount.
MacKenzie and McWilliams always did everything according to state and local law governing medical marijuana. Under state and local guidelines, medical marijuana patients can either cultivate their own pot or hook up with a caregiver who grows it for them. MacKenzie and McWilliams had both been caregivers prior to the arrest, by choice assisting patients most in need. Buying off the street isn't an option because it's illegal, doctor's recommendation or not, and because you never really know what you're getting, she said. Buying from one of the 10 or so dispensaries that have cropped up in San Diego is, as MacKenzie interprets the law, illegal as well-no provision in Prop. 215 or a subsequent Senate bill allows for cannabis dispensaries.
It'll take time, too, for MacKenzie to ease off the morphine and Marinol and get back into routine of using cannabis. The body is equipped with cannabis receptors, and those receptors must be filled up for the drug to have its intended effect-that's why recreational marijuana use isn't the same as medical use, MacKenzie points out.
Speaking to the AIDS education group HEAL in early September, MacKenzie carried in her pocket a small transmitter that connects to two electrodes attached to her lower back. The device sends small jolts of electricity that are supposed to fool her brain into ignoring the pain that otherwise feels “like someone is drilling on the base of my spine without anesthesia,” she said. She's certain that if an MRI of her spine had been done a few years ago, before she had to cease using cannabis, the picture would have shown the discs had retreated, no longer pushing into her spinal column.
Nearly two months after McWilliams' death, I asked MacKenzie if she's at peace with his decision. It's the only time in our four meetings that she expressed any hint of anger towards him.
“There's a huge mess left, you know?” she said quietly.
A former patient of theirs, a Lakota woman, told the couple that she had had a vision: in 20 years they would get national attention for their advocacy work. That was seven years ago-there's still 13 to go. MacKenzie and McWilliams often talked about the woman's prediction, even a week before his death as they were driving back from dropping off MacKenzie's son in Murrieta.
“Maybe things would have worked out,” she says now. “At the same time, I have to respect that it was his body he had to live with. I know how difficult it was and I respect that part of it.”
The next day, MacKenzie sent me an e-mail-she had some time to think about my question. Her focus shifts to big-picture issues, the kind she and McWilliams didn't have the energy to devote much time to during the past three years. “I... will not have peace until Congress redresses the wrong and changes the law, removing cannabis from Schedule I and making it freely available as medicine, including the right of patients to grow their own medicine.”
Schedule I drugs are those considered by the Drug Enforcement Administration to have a high potential for abuse and no medical value. PCP, crack and opium are all Schedule II drugs-likewise they have a high potential for abuse but at least the DEA considers them medically viable.
On Oct. 4, in Washington, D.C., there will be a “Rally for Rescheduling” that MacKenzie considered attending. She ultimately decided against it and is collecting petition signatures instead, to be presented to Mike Leavitt, the Bush administration's secretary of Health and Human Services. She will be in D.C., though, in November to lobby for the Truth in Trials Act, slated to be renamed the Steve McWilliams Act, which is stalled in the House Subcomitte on Crime, Terrorism and Homeland Security. The bill would allow defense attorneys representing medical-marijuana users in federal court to introduce evidence to show the defendant was using marijuana for medical purposes and in accordance with state law. Currently, such evidence may not be introduced.
MacKenzie was mildly surprised to learn that Congress-unlike the San Diego City Council-doesn't allow the average person to comment at House and Senate hearings on behalf of an issue. Instead, a member of the public must be invited to testify. She's hoping for that invitation.
McWilliams' death allows her to do things like this. In his letter, he acknowledged that he had to pull himself out of the game. “I believe that my action of not being here can help move the discussion of medical marijuana back to what's good for the patient without the DEA telling us which medicine we can use.” With the fallout from Vioxx and Celebrex-prescription medications for arthritis that were pulled from the market after they were found to cause a high risk of heart attack and stroke-and overall increased costs for prescriptions, the window of opportunity for medical marijuana to get a fair shot on the federal level is, at least, slightly cracked open.
Mostly, MacKenzie wants to again run a coffeehouse and gathering spot like she and McWilliams once did. For now, she's at the North Park farmers market most Thursdays selling hemp products, Shelter from the Storm merchandise, gathering petition signatures and handing out medical-marijuana literature to anyone interested. Moving forward keeps her from dwelling on the past.
“As long as I keep working, as long as I keep making progress and as long as I know that things are being done to get this changed as fast as possible. If I don't get up and do something, I sit here and feel bad for myself, and that's not what I'm supposed to be doing, anyway.”