I took that screen shot the night before last as I sat watching and listening and weeping and smiling through Realm of Caring’s tribute fundraiser. It was the one-year anniversary of Charlotte Figi’s death — Charlotte of the eponymous Charlotte’s Web cannabis medicine. That mighty child and her mother Paige, along with Heather Barnes Jackson, the Stanley Brothers, Ray Mirzebegian and many, many others changed countless lives, saved countless lives, including our Sophie’s. As one of the original families to use Charlotte’s Web, we were asked to make a short video to include in the night’s online festivities. It was a night of music and joy along with testimonial and gratitude and sorrow, and you can watch it in its magnificent entirety on Youtube.
You can donate, too. I hope you will.
I couldn’t stop tearing up and sometimes even openly weeping. I am just so damn grateful to have been a part of this movement, to have forged these connections with such sublime human beings. I remember walking along Melrose Avenue in 2008, hesitating to go into the pot shops lining the avenue, knowing that I’d have to lie to get a medical marijuana card, tell the “doctor” that I had headaches and backaches, anything to get the card and then to look for the stuff that might help stop Sophie’s seizures. I’d read some article about marijuana helping those with epilepsy, and I’d joked about blowing the smoke in her face. Sophie, then, was just — well — seizing. She’d been on 22 drugs, sometimes three at a time. There didn’t seem to be a way out. Years went by. The CNN/Sanjay Gupta documentary aired. Sophie, then, was just — well — seizing. She was nineteen in 2014 when, as one of the first twenty families in California to get off the waiting list (that would eventually number in the tens of thousands), her seizures remitted. The literal battle that followed, the one that would dwarf all the other battles, is largely forgotten, I think. The one that Paige and Heather and Ray and all the other mothers and fathers fought for our children and yours. We did that. Most states now have laws that allow some form of cannabis medicine, and we helped moved them from ignorance. The ones that don’t are just — well — stupid. The federal government keeps marijuana as a Schedule 1 substance, and that’s beyond stupid, but — well — money.
Covid and seizures took precious Charlotte, but her legacy is long and wide, and the web she spun, brilliant. Listen to the testimonials of parents in the video and enjoy the glorious music. Honor and lift up Charlotte and the millions of people like her by donating to Realm of Caring.