While the rest of the universe spends each October wearing pink to show support for breast cancer research/awareness/eradication, Nichole Montanez wears purple. In fact, Montanez wears her bracelet, which reads "purple a'wear'ness Dravet.org," all year long.
The bracelet helps the artist, who lives in Cañon City and works in Colorado Springs, engage people in conversation about Dravet syndrome and other forms of epilepsy. But she's looking to reach many more with "Face of Cannabis," a series of photographs featuring local children who are combating serious ailments like these with cannabis oil.
When I spoke with Montanez last week (disclosure: we first met as co-workers 17 years ago), there were 24 faces included in the series, which you can see at faceofcannabis.wordpress.com. Today there may be up to six more. The kids range from 19 months to 18 years old; most have epilepsy in some form, and one has cancer.
As of now, all the children are using or signed up to use Charlotte's Web, a strain of medical cannabis named after Charlotte Figi, a Colorado Springs 7-year-old who was the first child to use the oil with great benefits. Charlotte is also included in the series.
One face missing is that of Montanez's own niece, Hailey McGuire, better known as Teapot. But Teapot, who suffers from Dravet syndrome, is who led Montanez to this endeavor.
"I'm not an activist — I'm just the aunt of a girl who has epilepsy," she says.
Teapot, now 7, had her first seizure when she was 4 months old. After that initial visit to the hospital, the family noticed twitching throughout the day. While Teapot wasn't suffering grand mal seizures that frequently, she was more or less constantly seizing. It took another two years before she was diagnosed with Dravet syndrome, which is characterized by severe seizures and developmental delays.
"I spent many hours in the hospital watching her seize, I've spent many hours at home," Montanez says. "I've said goodbye to her more than once."
Charlotte also has Dravet syndrome; her mom, Paige Figi, knew of Teapot through a Dravet Facebook group, and with her husband Matt organized a fundraiser for Teapot during one of her hospital stays. Montanez became friends with Paige, and through her came to Realm of Caring, a nonprofit that provides support and education about medical cannabis oil (see "That's some pot," News, Oct. 23).
Teapot doesn't use the oil; she's responding pretty well right now to other meds. But Montanez was so taken by other families' experiences with it that she started volunteering to provide child care for parents at Realm of Caring support group gatherings.
"She doesn't even have a child on Charlotte's Web," says Figi of Montanez. "But she comes to these meetings and these kids are having seizures in my living room, and there's Nichole holding them."
Spending time with children similar to her niece, Montanez was inspired to start taking portraits. She hopes viewers can look into a kid's eyes and not see the condition: "I want nothing to distract from the 'childness' of it."
While you can see the portraits — all close up and in black-and-white — and read the testimony of parents whose children have been helped by medical marijuana on her blog, Montanez envisions the project as a curtain of portraits, all printed on metal, that will travel. She's already talking with Colorado galleries.
"No weed, no leaves, no smoke," she says. "Just kids, that's it."
As it happens, November is Epilepsy Awareness Month, making it a better time than most for Montanez to watch how media cover the use of medical marijuana among kids. "Everyone wants to show the sickness of it. I want people to know these children are the best thing that has happened to their parents," she says. "I don't want people to look at them as a little bundle of pity. I want them to see children who are happy."