GOING IT ALONE

Barbara MacKenzie Struggles to Carry on the Legacy of Her Partner,
Medical-Marijuana Activist Steve Mcwilliams

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."