Marie Myung-Ok Lee Special to the Washington Post
It took me awhile to perfect the cookie recipe. I experimented with ingredients: Blueberry, Strawberry, Sour Diesel, White Widow, Bubba Kush, AK-47 — all strains of cannabis, which I stored, mixed with glycerin, in meticulously labeled jars on a kitchen shelf. After the cookies finished baking, I'd taste a few crumbs and annotate the effects in a notebook. Often, I felt woozy. One variation put me to sleep. When I had convinced myself that a batch was OK, I'd give a cookie to my 9-year-old son.
At the time he was consumed by violent rages. He would bang his head, scream for hours and literally eat his shirts. At dinnertime, he threw his plates so forcefully that there was food stuck on the ceiling. He would punch and scratch himself and others, such that people would look at the red streaks on our bodies and ask us, gingerly, if we had cats.
But when I got the cookies right, he calmed down. His aggressions became less ferocious and less frequent. Mealtimes became less fraught. He was able to maintain enough self-composure that he even learned how to ride a bike — despite every expert telling us it would never happen.
I realize that some people may look askance at parents who keep pot in the house, let alone conduct semi-legal medical experiments on their children. But it's time we reexamine the cultural and legal restrictions we put on cannabis, especially as it pertains to kids. My son's life has changed because of it.
Since he was an infant, I'd watched my son struggle. At 18 months, he underwent two major spinal-cord tumor surgeries, only weeks apart, and was immobilized in a cast for a year. After that, the violent rages began — sometimes as many as 300 in a day.
My husband and I didn't understand why he acted this way until he was diagnosed at age 3 with a gut disease that left him in pain for most of the day and severe autism that made it difficult for him to express himself or ask for relief.
We tried all kinds of treatments, including applied behavior analysis (the supposed gold standard in autism therapy), occupational therapy, horse therapy and auditory integration. We even got him a session with Soma Mukhopadhyay, a celebrity in the autism world, whose Rapid Prompting Method has helped some people learn how to communicate by pointing instead of vocalizing. By the time he was 5, our son was in a special school and on a hypoallergenic diet. His gastroenterologist prescribed powerful anti-inflammatories, which left him vulnerable to violent episodes triggered by, say, hearing a dog bark 100 feet away, but stopped the worst head-banging: on our cast-iron tub.
Then, a couple of years later, the medication stopped working. And his aggressions exploded.
His school insisted he see a psychiatrist, who recommended the drug Risperdal to treat his "autistic irritability." I was reluctant. Adults taking Risperdal often refer to it as a "chemical lobotomy." In kids, there are also reports of alarming weight gain and sleepiness. Additionally, back then I could find only one study on the medication's use in children with autism. It tracked 49 children who took the drug for eight weeks to six months — hardly long term — and showed uneven results on behavior, with side effects including an average weight gain of six pounds in the eight-week period, elevated insulin levels and tremors. My husband said he'd rather our son attack us every day than suffer through that. But the school was calling us weekly, demanding that something change.
I was desperate and frantic. It seemed like I'd run out of options. Then I happened upon a paragraph in Michael Pollan's "The Botany of Desire." Pollan argued that cannabis is great for pain relief and can slow short-term memory formation. Might this, I wondered, help mitigate my son's pain and the onslaught of sensory input that he struggled to process?
To research this question, I dropped in on a medical-marijuana patient group that met at Brown University, where I taught. The collection of severely ill patients couldn't have been further from the giddy stoner convention I'd imagined. One after another spoke of the healing impacts of cannabis. A young man with crippling anxiety and Tourette's syndrome said a slew of psychiatric drugs couldn't quell his outbursts, but pot did. It wasn't a cure. But it helped.
I came away convinced that marijuana was worth a try. After weeks of back and forth, my son's neurologist agreed. And so, at age 9, my son became the youngest person with a medical-marijuana license in Rhode Island. We found a certified supplier. Then, we got busy figuring out which type of marijuana would best work for him and how to get him to ingest it.
The first days were overwhelming. The grower would show up with six or more strains. And I was terrified of doing something wrong. But Lester Grinspoon, a psychiatrist and professor at Harvard Medical School who has been researching cannabis since the 1960s, reassured me that the worst we could do was make our son fall asleep. Of course, paranoia is another cliched side effect of marijuana, but Columbia University neuroscientist Carl Hart, who has administered marijuana to thousands of research subjects, notes that paranoia wears off within hours.
Indeed, cannabis is one of the few substances on earth that can't kill you. It was classified as a Schedule 1 drug under the 1970 Controlled Substances Act, suggesting the potential for abuse, a concern about safety and the absence of an accepted medical use. But subsequent research has shown that cannabis is not physically addictive, as many illicit drugs are, and that it could make life better for people with a range of ailments, such as Tourette's, irritable bowel syndrome, anxiety, glaucoma, spasticity, Huntington's disease, chronic pain and intractable epilepsy. And the safety concerns have turned out to be unfounded. "Nearly all medicines have toxic, potentially lethal effects," a Drug Enforcement Administration administrative judge wrote in 1988. "But marijuana is not such a substance. There is no record in the extensive medical literature describing a proven, documented cannabis-induced fatality." So even parents who might not have my penchant for methodical experimentation would have little to fear in using it to treat children like mine.
For my son, not every strain of cannabis helped. When we did see positive effects, they were often accompanied by red eyes or an unwillingness to do anything ("couch lock," it's casually called). But eventually, we settled on White Russian, a favorite of cancer patients in pain, and we transitioned from cookies to an oil tincture that my son received orally every few hours with a dropper. (That allowed us to titrate the dosage and made it easier for the nurse to administer at school.) It left him clear-eyed and alert, without the constant pain-furrow in his brow or the off-the-wall rages.
It seemed like a miracle. And seven years later, it's still working. But unlike with other wonder drugs, we can't just pop into the pharmacy for refills.
Growers come and go, and their supplies are always just one mite infestation or robbery or legal scare away from disaster. My son's original provider, who had put a lot of his own money into making an indoor grow-room for our son's plants, was robbed and dropped out of Rhode Island's medical-marijuana program. Another certified grower accidentally killed his plants. Not long after, another certified provider we used called us in a panic. He was being evicted because his landlord was getting anxious about his organic-marijuana operation; pot, though legal under state law, is still federally illegal to grow, possess or ingest. (Licensed medical-marijuana patients and providers have ended up in prison, even while OxyContin, a powerful Schedule 2 drug, is legally prescribable for children.)
Once, when my son was late getting his cannabis oil after school, he put his head through a window and cut his face in a frenzy of pain. We gave him his medication, and he calmed down enough that we could bring him to the ER. But at the hospital, I didn't know whether to admit that we'd given him cannabis. Would I be arrested? Would they call social services?
Things got even more complicated when we sold our house in Rhode Island and moved to New York full-time in 2015. Eighty-two percent of New York voters support medical marijuana, according to polls. But the state's newly implemented medical-marijuana program is absurdly rigid. While other states include autism on their lists of qualifying conditions, New York does not consider glaucoma, much less autism, a sufficient qualification, and physicians have to take a time-intensive course to become certified to prescribe. We left Rhode Island with almost a liter of cannabis-infused oil, but, even though we measure it out in drops, it won't last forever. And because my son had to turn in his medical-marijuana license when we moved, we can't go back to get more.
The lone dispensary that serves all of Manhattan was, when we walked by one recent weekday, empty of patrons. Contrast this with Denver. In 2014, I visited Medicine Man, a medical and recreational dispensary on the outskirts of the city that was so crowded, I had to wait in line with about a dozen other people. I was amazed by the diversity of cannabis available, the wide variety of strains, and the mesmerizing display of tinctures, edibles, even topical creams for muscle pain. Trained workers were on hand to answer any questions. I wanted to cry, thinking that I could buy bags of White Russian but I wouldn't be able to take them out of Colorado. If we bring our son's marijuana when we travel, we worry that we're committing interstate drug trafficking.
This subterfuge, the stigma, the fear and the work required to find a steady supply of the right plant prevent more families with kids in crisis from trying medical marijuana. Even parents sent along by our son's neurologist, who has been amazed by his transformation, have concluded that it's all too much for them.
Removing these barriers would be as simple as removing cannabis from Schedule 1, as several high-profile leaders, including the governors of Washington and Rhode Island, have urged. I was optimistic that President Barack Obama would do it. After all, he is an admitted onetime recreational user, who told the New Yorker that marijuana is less dangerous than alcohol and who's said that science guides his decisions on policy. But the DEA sidelined science when it rejected reclassification in August. "This decision isn't based on danger," DEA chief Chuck Rosenberg said. "This decision is based on whether marijuana, as determined by the FDA, is a safe and effective medicine, and it's not."
In the remaining weeks of his presidency, Obama could still instruct Attorney General Loretta Lynch to remove it from the schedule, leaving a legacy of marijuana patients and their providers who would be protected under the law.
President-elect Donald Trump has said little about cannabis, other than it "should be a state issue." That doesn't bode well for federal declassification. And some observers predict that Jeff Sessions, Trump's pick for attorney general, may go to war on legal marijuana.
What are my choices, then, as a law-abiding parent, when my son's cannabis oil runs out? The look of joy and pride on his face as he rides, same as other kids with their families, on a beautiful waterside bike path in New York is glorious to see. He shouldn't have to go back to days of howling pain and self-injury.
Marie Myung-Ok Lee is a novelist and essayist who teaches at Columbia University.
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