Marie Myung-Ok Lee was willing to try anything to help her son.
Afflicted with a gut disease and severe autism, Jason was a child prone to violent rages that occasionally left his mother with injuries.
“I still have scars from where he bit me,” she says.
Lee — a novelist and essayist who teaches at Brown and Columbia — firmly believes that it was cannabis, ultimately administered in the form of tinctures and oils, that kept Jason, now 17, from being institutionalized as many experts had recommended.
In an op-ed for The Washington Post published in January, Lee recalled first reading about the idea of cannabis as medicine in Michael Pollan’s The Botany of Desire, and outlined the fairly primitive trial-and-error approach she took to find the right type of medicine to calm Jason and alleviate his chronic stomach pain. While never a recreational user of cannabis, Lee used herself as a guinea pig as she experimented with different edibles, strains, and oils that might provide her son with some comfort and relief.
Before she turned her home into a cannabis test kitchen of sorts, Lee exhausted every conventional option, from applied behavior analysis to horse therapy. Nothing worked. As Jason’s teachers continued to make overtures that perhaps he should be placed in an institution, Lee says she was haunted by the legacy of facilities like the infamous Willowbrook State School, the Staten Island facility where disabled children were subject to extreme neglect and squalor.
“Before people could recognize what autism is, they tended to just warehouse people, and they’d scream and cry and hurt themselves all the time,” Lee explains. “My father’s a doctor, so I really grew up thinking that the experts are always right.”
This time, however, Lee decided not to listen. Following the passage of the Edward O. Hawkins and Thomas C. Slater Medical Marijuana Act (Rhode Island) in 2006, she got her son a license and joined the Rhode Island Patient Advocacy Coalition (RIPAC).
“Through RIPAC, there’s almost this underground network where they know what people are growing or considering growing,” Lee says. “You’re allowed to grow a certain number of plants, but it’s not something you can do if you just live in a house in Providence and you have neighbors.”
The head of RIPAC connected Lee with a grower who had recently graduated from college with a degree in agriculture and who was, Lee recalls, “pretty evangelical” about the power of cannabis. Lee compares figuring out which strains and what delivery systems would work for Jason to playing roulette. Eventually, she settled on oils and tea, which dramatically and immediately improved Jason’s quality of life.
“His aggressions became less ferocious and less frequent,” Lee wrote in the Post. “Mealtimes became less fraught. He was able to maintain enough self-composure that he even learned to ride a bike — despite every expert telling us it would never happen.”
For a time, it was an ideal arrangement. Then the grower Lee was working with was robbed and shuttered his business.
Now, Lee, her husband, and Jason live in New York City, where the laws are much stricter and the medical program is built around access to extracts rather than the full cannabis plant. This means Lee can’t procure more of the White Russian strain of cannabis that she found to be the best fit for Jason’s needs.
“We don’t know exactly what is affecting our son,” she says. “With the White Russian, the strain that works best on him, sure it has this really high THC-to-CBD ratio, however, what I’m thinking might be working on him is that that strain is very high in terpenes.”
Terpenes, which exist in many herbs, fruits, and plants, are in essence fragrant oils that exist as a compound in cannabis. They give the plant its fragrance and are responsible for the aromatic characteristics of different strains. In an effort to cope with the limited access she now has in New York, she’s even turned to crushing up dried thyme and using other herbal anti-inflammatory and pain-relieving preparations to supplement the more limited range of cannabis treatments to which she now has access.
She says that when she first wrote about treating Jason, then 9, with cannabis in a series of columns for Slate, she was wary of the media interest her articles produced. Despite the Brown switchboard being “inundated with requests,” Lee told the school to decline all media inquiries.
Now, times have changed, and Lee hopes her op-ed for the Post brings to light the immense difficulties parents face in trying to provide their children with life-changing medicine in a country where each state has different rules and cannabis remains illegal on a national level.
“Many people commented on my article and said I should simply move to a legal state. I think the point of my piece is really that as long as cannabis remains a Schedule I substance, parents are always still at risk, even if you’re in a legal state.”
Zack Ruskin covers news, culture, and music for SF Weekly.