“Right when doctors were telling us there was no alternative, this new alternative showed up,” said local pediatric cannabis advocate Allison Ray Benavides, whose son, Robby, was diagnosed in 2013 with intractable epilepsy — i.e., seizures that were not reduced by medicine. News of the surprising effect of cannabis products on pediatric patients was just starting to emerge — sometimes dramatic reductions in the number of seizures seen each day — and Benavides found the timing to be serendipitous.
For Benavides, that alternative is Charlotte’s Web, a high-CBD, low-THC strain of cannabis named after Charlotte Figi, a Dravet syndrome patient featured in the 2013 CNN documentary “Weed.” It’s a rare, serious and untreatable form of epilepsy that develops in infancy.
Several states away, before “Weed” was filmed, Colorado-based photographer and journalist Nichole Montanez was already paying attention to Figi. Her niece had recently been diagnosed with the same disease, and for Montanez and her family, the future felt bleak. Her niece’s development was suffering at the hands of her disease, and she received a G-tube because she was no longer eating, Montanez said it was a wake-up call. The medicine was not going to help, and they had to face the possibility that they could lose her.
At the time, Montanez had recently been laid off from her newsroom art job and started work on freelance project about the Figi family, who also lived in Colorado. She photographed Figi, and during one session, Montanez witnessed a simple scene that gave her hope.
“One of those times that I was there, Charlotte was eating. And she had been tube-fed,” said Montanez, who described herself as a skeptic back then, assuming medicinal uses of weed were just “excuses to get high.” She realized she wanted Fiji’s progress for her own niece. “That’s when I became a believer, in that moment, just sitting there watching her have lunch.”
In the summer of 2013, Montanez then set out to put a new face on cannabis. She wanted to tell the stories of kids impacted by grim and untreatable diseases who saw progress or greater quality of life with medicinal cannabis. “If we show people these kids, how could they say no to that?”
She started going to family support groups and reaching out across online support groups. She thought she’d end up with a few dozen portraits and do a few restaurant or cafe shows in Colorado, but the project blew up.
“The families kept coming, and I kept photographing the kids,” Montanez said.
Over the last five years, Montanez said she has taken portraits of over 280 pediatric patients using medicinal cannabis.
“The Face of Cannabis,” Montanez’s photography exhibition held on Saturday only at Barrio Logan’s La Bodega gallery, displays a large-scale installation of 105 portraits printed on metal tiles, clipped together to be one massive, impactful hanging. Throughout the gallery, other documentary-style shots will be displayed from Montanez’s sessions with the children. The exhibition runs from 5-10 p.m.
Benavides’ son Robby is featured in the exhibition, along with several other San Diego children.
Benavides thinks that telling these children’s stories is important, particularly in San Diego. “From day one, those of us at our local ground zero have been organizing, sharing our wisdom with each other and collectively pushing our children’s providers to recognize what we are doing and support us, from Rady Children’s Hospital to the Regional Center to CPS to our schools,” said Benavides. “We’ve definitely changed San Diego for the better for the pediatric patients coming after us.”
And in telling these stories visually, through Montanez’s photography, Benavides thinks that the impact will be significant, allowing not just raw and vulnerable experiences to be shared with the community, but also heralding a reframed public perception of cannabis. “The recreational market has the suffering of sick children to thank for their new conveniences,” Benavides said.
The newly legal recreational market, however, has had a negative impact on medicinal use for pediatric patient families like Benavides and other San Diegans. Changes in availability, cost and insurance coverage have brought new (or in some cases, long-familiar) challenges to the families of kids with life-threatening diseases.
“It was always just about the right to try something that might be lifesaving or just make their life a little bit better,” said Montanez. “It’s not true that everyone has access.”
Ballet in Art Museums, Art in Alleyways and More News for the Culture Crowd
- Patrick Coleman, author of “Fire Season,” has a new book, the much-anticipated novel “The Churchgoer,” and he will read Wednesday at Mysterious Galaxy. From Literary Hub: “Coleman combines evangelical malpractice, noirish cynicism, and seedy southern California underworlds in this debut literary noir.”
- In more book news, San Diego-raised Juliet Escoria comes to The Book Catapult on Thursday to read (and discuss with me) her dizzying and raw new book, “Juliet the Maniac.”
- SDMA teams up with the San Diego Ballet to present pop-up performances of “Don Juan,” on Friday, and museum admission is just $5 that night. This Instagram video of the project is mesmerizing.
- On Friday, Art Produce opens two exhibitions. Tessie Salcido Whitmore’s project, “I Rang a Silent Bell,” which explores the artist’s counterculture upbringing, is part of the Elizabeth Rooklidge’s curatorial residency. And Cindy Zimmerman’s “Unauthorized Version” is a look into the “defiant and adventurous M. Magdalen.”
- La Jolla Music Society’s Summerfest kicks off on Friday and runs through Aug. 23. Highlights include the special “Synergy” events, blending classical music with not just other music genres like jazz, but with other art mediums entirely, including visual art and dance.
- The Interchange Project Walking Tour is a free, one-hour guided tour on Saturday through North Park’s new alley art and murals. Pieces by Derek Weiler, Ashley Fenderson, Robert Andrade, Allison Wiese and Xuchi Naungayan Eggleton are currently on display, with one more piece by Scott Polach on the way later in August.
- “Neighbors,” is a one-day art festival in National City on Saturday, featuring food, local beer, art and more.
- “Hunting Charles Manson” coauthor (and San Diego library’s “author of the month,” Caitlin Rother appears at the Central Library on Saturday afternoon to discuss the true crime book.
- An exhibition of works by 25 local artists in the SDMA Artists’ Guild, “Au Naturale: Nature’s Art,” opens on Saturday at the Mission Trails Visitor Center (which, if you ask me, is a work of art on its own). The guild serves as a link between world-class institutions like SDMA and regional artists.
- Now entering its final month, the summer-long San Diego International Organ Festival showcases the young French organ star Thomas Ospital on Monday.
- Leslie Goran’s “California Tapestry” exhibition at the Mission Trails Visitor Center closes on Friday. Sales of both the exhibited artwork and the commemorative greeting card prints she created for the Visitor Center gift shop will support the Mission Trails Regional Park Foundation.
- There’s a closing reception on Sunday for “Absent/Present,” glass artist Kathleen Mitchell’s solo show at Sepehri gallery.
- I loved this profile of the Yeezus cocktail at Whip Hand that is actually not so much about a cocktail in a Kanye/Jesus glass, but more about Instagram and avoidance plus the-opposite-of-avoidance, and the hospitality industry’s reliance on all of that. (CityBeat)
- You decide what’s cooler: the decor, the giant dinosaur, that golden espresso machine, or the actual drinks at the Invigatorium, part of CH Projects downtown. (Eater)
- Ah, the amazing purple vegan pizza at Tribute Pizza (and the rest of their separate vegan menu) is finally getting the paparazzi treatment it deserves. (Edible)
- These gourmet edible baked goods, tiny sweets and other delicacies are infused with cannabis and super classy. (Edible)
What’s Inspiring Me Right Now
- I devoured this whip-smart and quite terrifying article on the striking influencer culture in a seemingly-idyllic beach town in Australia (and Instagram’s dark side). “In just a few years, the app has turned making your life look like a vacation into an actual job for some […] and, for others, has become a constant reminder that watching people live as though on vacation is the only vacation most people can afford. Instagram makes us sad now.” (Vanity Fair)