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The Wilson family relocated from New Jersey to Colorado last month, and the day after their arrival they wrapped up filming for Sanjay Gupta’s “Weed 2: Cannabis Madness” documentary, which aired tonight on CNN.
In the midst of unpacking and settling into their new home in Denver, the activist super-parents took time for a quick chat with Ladybud.
Vanessa Waltz: For people who haven’t been following your story, can you give us a quick recap of your history as medical marijuana advocates and activists?
Meghan Wilson: Our daughter Vivian was born with a type of epilepsy called Dravet Syndrome. Dravet Syndrome typically responds poorly to the available FDA-approved epilepsy drugs. Vivian was 11 months old when we received the genetic test results confirming the diagnosis.
After sharing the (terrible) news, a friend told me she had just watched an episode of “Weed Wars” featuring a dad in California treating his son, also with Dravet Syndrome, with marijuana. Brian and I knew at that moment we had reached the end of the pharmaceutical rope with Vivian and had to learn more about marijuana as medicine for epilepsy.
Brian Wilson: We never set out to become advocates/activists. When we looked up the status of medical marijuana in NJ, we saw it was legal as medicine. We thought we were all set. Then we looked into the program, the doctor registry, the non-existent dispensaries and began trying to get in the program. That’s when we realized we had an uphill battle.
VW: How do you feel about the trend for CBD-only legislation in states without current medical marijuana programs?
MW: Generally speaking, I do not support CBD-only legislation; primarily, because it excludes a huge population of potential patients. It may even exclude epilepsy patients who require more THC then the hemp laws allow.
I’ve read statements from parents along the lines of “we need to take baby steps,” “let’s ease them into this” and “we can expand the law later.” If our experience in NJ has taught us anything it’s that it is close to impossible to change a law! Especially when it comes to legalizing a federally illegal substance.
On the flip side, Brian and I have asked ourselves “what would we do if we were in their shoes?” It’s really hard to say.
BW: I am glad we’re not in those parents’ shoes. We had the fortune to already have a MMJ law in New Jersey when we started. We didn’t have to start from scratch. I can understand the fear, the doubt and the desperation. I honestly don’t know what I’d have done, a year ago, if I was in that position, but I hope I’d have done the right thing.
Knowing what I know now, of course I’m against CBD or Hemp only legislation. Here’s the thing: by fighting only for your child, you’re leaving all of the other children and adults left to suffer and die. In the end, the Hemp strains are only going to work for a minority of seizure children.
Politicians should not be the ones calling the shots. They are looking to cover their ass. CBD/HEMP, whatever you want to call it, is safe. “Nobody will get high” – Like that’s the worst thing in the world. These kids with epilepsy are already blitzed on their other pharmas. CBD legislation is a safe out and it makes the politicians look good: “Look what I did FOR THE CHILDREN.” They pass a shit law, get tons of public praise, and when the cameras go away, when the journalists move on to the next story, many of the parents are stuck, with their still sick and dying children, with no more options and no more media to cover their story. The story is over.
If you are going to put in the effort, do it right. Don’t half ass it. It’ll be harder to change it later. It’s a horrible situation. Some of it comes from ignorance. Heck, when we first started, we only thought we needed CBD. But we learned. We kept reading. Nobody was talking about THC in the beginning. THCA wasn’t even on the radar. Even when we started the CNN documentary, we didn’t fully understand the importance of THC. There’s science here. There’s the entourage effect. THC makes CBD work better. In turn, CBD lessens the impact of THC.
VW: What was it like working with Sanjay?
MW: Simply amazing! He is friendly, funny, compassionate and genuine. He called and texted throughout the filming process to check up on our progress and Vivian’s health.
Funny story: when he arrived at our home in Denver for the final interview he looked at me and said “Wow, it’s so weird to see you in real life because I’ve been watching all the footage!” I said “umm…how do you think we feel about seeing YOU in real life!”
BW: In terms of being interviewed, it was a whole new level. You could feel the professionalism. When we did our local TV news segments, they’d spend 2-3 hours at our house, asking questions as directly as a guy trying to skip foreplay. Sanjay understands foreplay. When we started our talk, he started by asking us how we met, what we did in our lives before we had kids. He got to know us. He got us conversational. I was very impressed.
He’s also very knowledgable. A lot of people gave him shit for Weed 1 because he focused on CBD. People forget that he also talked about the benefits to THC. He was doing a made for TV documentary – lowest common denominator had to be considered. It was not a science lesson. Of course those in the trenches of MMJ reform were a little disappointed. But guess what, he got your grandmother talking the medical benefits of marijuana!
VW: What do you think Governor Chris Christie’s response will be to Weed 2?
MW: I think it’s fair to say he’s going to be pretty pissed! Chris Christie did not show my family an ounce of compassion or respect during the past year. This documentary was the perfect platform to show the world what a broken medical marijuana program looks like.
BW: I don’t think Christie will watch it. He has not once shown an interest in engaging. Watching it would be an admission of learning, and he cannot stand by his position if he knows the full story of medical marijuana. He can only make his case from a point of ignorance. That’s why he does not agree to talk to any of the parents, patients or non-governmental experts.
VW: So you’ve now been in Denver for a few weeks…How do you like it there?
MW: I love it. Denver is my kind of city! I’ve been told I need to slow down and be more patient. I call and email our landlord frequently because things aren’t being done at the speed I would expect.
Sometimes when I cut people off while driving, I picture them saying “oh of course, because she is from Jersey!” I need to get CO plates stat!
BW: The people in Denver are ridiculously nice. I feel like an ass. On one hand, I feel like a charlatan not being “Jersey” in my interactions. On the other hand, I want to be that nice Colorado person.
Denver is amazing, but with a child in Vivian’s condition, we cannot take advantage of it as a family. That’s the whole reason why we’re here, though, right? To get Vivian’s condition better so we can enjoy our neighborhood. We have access to so many different strains out here. If Medical Marijuana is going to work for Vivian, it’ll work out here.
VW: How is Vivian doing now, and what is her current treatment regimen?
MW: Vivian is ok. The first few days were a bit rocky, I suspect as a result of the change in altitude. She had 2 stellar days last week followed by 2 bad days. She is taking Charlottes’s Web, a high CBD strain (her batch is 30 CBD: 1 THC). We are prepared to add THC and experiment with different strains if we need to.
BW: We have a lot of work to do with Vivian, both with figuring out CBD/THC/THCA levels as well as tracking and experimenting with other cannabinoids and terpenes as well as the daunting and dangerous task of weaning her pharmas as best we can.
We all have had our good and bad days out here. The big difference is that while in New Jersey, calling one of our parents to come watch the kids as we took a break was a simple matter. Now, we have nobody. In time, we hope to have a few people who may fill that role, but that’s on the distant horizon. We can’t even take the kids on a plane and visit home as we’d be breaking federal law taking Vivian’s meds with us.
VW: By the time this interview drops, the special will have aired – but as of now, you haven’t seen the final cut. What are your hopes and fears about how you and your family will be portrayed?
MW: First and foremost, I hope the audience sees us as parents who love their kids to the end of the earth, because we do, and that’s what this is all about. It just so happens that the issue at hand is marijuana, but I would be equally passionate about ANYTHING if there was a good chance it would reduce Vivian’s seizures without any negative side effects.
BW: Our biggest fear will be to be portrayed as CBD only advocates. Of course we support the use of CBD, but we’re hoping Weed 2 does not focus on CBD only as treatment or give the impression that we are naive to the benefits of all of the other cannabinoids and terpenes in cannabis. Our mission in Colorado is to source the best mix of strains in order to find the best treatment for Vivian. We’re hoping the focus is on the absurdity of the lengths people have to go to in order to gain access to medical marijuana in the United States and how you or your child can be made to suffer based on the state you live in and a history of governmental lies.
MW: I hope that the powers that be on the federal level watch and see how the Schedule 1 status of marijuana is tearing families apart. Not because of addiction, rehab, jail, etc… but because families are splitting up, leaving behind jobs, friends, doctors, communities, to seek medicine…scratch that, a WEED, that can not be grown in their home states.
VW: What advice do you have for other parents who are considering medical marijuana for their child?
BW: Read, read, read and educate yourself.
MW: Learn about the endocannabinoid system. Marijuana is not one size fits all. Different ailments require different strains. The same ailment may require different strains. THC, CBD, THC-A, CBN…the list is endless. I am still learning every day!
BW: For those Dravet or other nasty seizure disorder parents, you never know if your child will be the next one we all read about on the facebook boards. Don’t let it come to that. No matter where you live, the process takes some time. Some states longer than others. Some states there are no options. If you’re in one of those states, get your ass to Oregon for an extended vacation where you can try this as a non-resident.
Most importantly, though, become an advocate. Become an activist. Don’t wait for others to do the work for you. Don’t just sign facebook petitions or share memes. Write letters to your representatives. Meet them, call them. Show up at their events. Get the papers involved. Don’t be afraid to say “I want to give my child cannabis.”
MW: If you are in a non-legal state, team up with local organizations who are working towards a law. Make your voice heard! Everyone deserves access to this plant.