The women gathered in the cozy living room of a home on Coronado Island, just over the bridge from San Diego, don’t have a name for their group, yet. They have found one another through word of mouth. Platters of cheese and crackers are scattered throughout, wine is being poured, and the women, seated on chairs, the backs of couches, stools and standing, have just introduced themselves when I get there. Led by Allison Benavides, whom I interviewed last week, the women meet monthly to share resources and to find and show support for one another as they navigate the cannabis world. A core group of about ten women had been coming for over two years before the group nearly doubled this winter. While the majority are full-time parent caregivers, there are nurses, an attorney, a social worker, a medical records auditor, an esthetician, a sales and marketing rep and a couple who sell essential oils from home. These are ordinary women living extraordinary lives, bound intensely to one another as they navigate the burgeoning world of medical marijuana. They are each pioneers in using cannabis to treat their children.
Only a couple of children are in the room tonight, but they are handed around, passed from arm to arm, cooed over and stroked gently. These mothers’ children have a myriad of diagnoses, including Tay-Sachs, Autism, Rhett Syndrome, Dravet Syndrome, Lennox-Gastaut Syndrome, Cerebral Palsy, Doose Syndrome, Pandas, Chorea, Brain-Injured, and Vaccine-Injured. Nearly all have seizures in addition to multiple disabilities, and some have been on hospice care. All have seen remarkable beneficial effects from cannabis medicine. After introductions, Allison opens up the meeting by pointing out the little altar that she’s set up in a corner of the room, ringed by tiny tea lights. She reminds the women that the candles have been lit for four children in the larger cannabis community that have passed away in the first three weeks of March. All died from complications due to seizures. We are silent for a few moments. Most of us know that these families’ tragedies could easily be ours. We are used to it.
The mood in the room, though sober after this, lifts when Allison tells the story of what she calls her first “referral.” Evidently, her son’s neurologist had recently called to get a referral for a doctor who could help with cannabis medication. The room breaks out into laughter at this reversal – we are, to a woman, more accustomed to reactions from professionals that range from ignorance and incredulity to outright disapproval of our forays into medical cannabis. That the tables have turned and our opinions and advice are being sought after is almost hard to believe, and even if eyes roll, we are encouraged. The room is filled, and it isn’t long before conversations break out here and there, but Allison doggedly tries to keep order by asking for specific questions.
“How do you really know how to dose?” one woman asks. She has not tried giving her child cannabis yet and is confused about how to do it. She tells the others that her daughter is on multiple medications. “Do I wean her from the medications before trying the cannabis or do I try the cannabis first?” she adds. The room starts buzzing with talk, but Allison manages to quiet the group and ask for a show of fingers for how many antiepileptic drugs each woman’s child was on before they began cannabis. Hands go up, and fingers spread. Some put up both hands, and everyone groans in recognition.
Allison asks for an experienced mother to stand and talk about her experience with multiple medications and how to juggle them with cannabis. Another woman talks about how she administers medicine through a feeding tube because of her child’s swallowing difficulties. The conversation shifts to another woman who has decided to stop giving cannabis to her son because there were too many variables involved, and she isn’t sure what’s going on or even what’s doing what. A couple of women express dismay about her situation and encourage her to try cannabis again, but the woman is emphatic that she is doing what’s best for her child. The others nod their heads and offer words of support.
“My mother and my Mormon upbringing raised me to understand from an early age the value of service and women supporting one another,” Allison tells me later. “I’ve always attended women’s circles and had strong women mentors.” It’s important to the group that no mother is told what to do, that each is empowered by the sharing of resources. Those with more experience give the less experienced the tools that they need to solve whatever problems come up. They constantly reassure one another that they can trust themselves and each other to safely figure out how to treat their children with cannabis.
I am struck by how so much has changed from when my own daughter was diagnosed with infantile spasms, a particularly rare and severe epileptic syndrome, back in 1995. With no internet to speak of and very little in the way of support, I literally had no one with whom to share my experiences despite living with ten million people in New York City. On the day we were released from the hospital, I was told by the neurologist in charge to “not read anything about infantile spasms as it’s too depressing.” The doctors told me what to do, and I did it, fighting back an increasing sense of panic as my daughter failed to improve, the seizures kept coming and I grew more aware that her treatment options were not only minimal but prescribed in a fashion more like a dart game than an authoritative decision. In the more than two decades that have passed since my daughter’s diagnosis, there have been some advancements in surgical techniques and medical devices like the vagal nerve stimulator or advancements with the ketogenic and Atkins diet. Several drugs that were once considered experimental are now standard. That being said, though, it also seems that relatively little has changed as far as treatment since those dark days in the last century when I was navigating the epilepsy world alone. Children with difficult to control or refractory epilepsy are still loaded up with drugs that have little effect on their seizures and cause serious side effects that disrupt their quality of life and that of their families. Many neurologists have been trained to communicate better with families, but many are still resistant to family-centered care. Young families are still fighting bureaucracy and for coverage of the drugs to which their kids are sometimes literally addicted. If they want to try cannabis, they face resistance and sometimes outright censure. What has changed, though, is that the internet, social media and groups like this one are radically pushing on the status quo by banding together in community and support. With cannabis in particular, they are pushing and leading a literal revolution.
The women eventually break up into smaller groups to discuss specific issues. One group decides to talk more about blood levels of anti-epileptics, and how they influence or are influenced by cannabis. They discuss when they do the draws and how they negotiate with their doctors to support them. I lead a discussion on my experiences weaning anti-epileptics from my daughter as we began to see success with cannabis reducing her seizures. Another group talks about when to add THC and THCa, and yet another talks about essential oils, including frankincense and how they’re used to support the child’s well-being. A discussion about dosing and how each child will respond differently to cannabis is presented in such a way that it calms the anxiety of a new mother who has clearly been overwhelmed and unsure where and how to start. Allison quotes from Professor of Psychiatry Jean Shinoda Bolen. “I just love her simple yet urgent message to ‘gather the women,’ because when we do, the wisdom is always in the room. In our education, in our stories and in our experience. The wisdom is there, in the room.”
Allison says that she also gets many emails and phone calls from people who can’t come to the meetings. Because they get no referrals from the Epilepsy Foundation affiliate, she started a website, Pediatric Cannabis Support, where those who might not want to come to the actual group can have access to resources and answers to their questions. She encourages local women to come to the meetings, though, believing that each family is doing something creative and important. “We all lose out when people don’t share what they have learned,” she says. The other women agree that meeting face to face is important. They stress that Facebook, while an important connector, can also get “super shitty, super fast.” Allison states, “The group here doesn’t ever. We have a lot of respect and love for each other. We are very good friends. I hope that piece doesn’t change as we grow.”
As I help Allison bring the plates of picked-over olives and cheese and crackers into the kitchen, I am struck by how in the space of a few hours, I have made about twenty new friends. I have laughed with them, shared my own experience, learned about their children and gained a new understanding of what cannabis has wrought in our world. It’s about powerful connections and healing, about wisdom in a room.