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I’m ashamed to say I didn’t even know New Jersey had a Medical Marijuana law on the books before we needed it. People fought for the bill for years, before the concept even entered our minds. People lost loved ones during that fight. I feel embarrassed, awful, apologetic, that when we needed the law, it was already there and I had no care or knowledge of it until we needed it. There I was, shouting from the rooftop for reform, but I had been clueless about the past decade or more of reform efforts in our state. It breaks my heart to think of the hardships and struggle the patients went through to get that original bill passed. And it boils my blood to think of how Governor Christie has sabotaged it.
In school, you learn about President, Congress & Supreme Court. You learn that each state has a similar model, but that’s all. People think the federal level is where you feel the most impact on your lives. It was in trying to get medical marijuana access for our daughter Vivian that we learned that the opposite is true.
It’s all local politics. I had no idea what town council was. I had no idea what a freeholder was. I had voted for them in the past, but mostly cast a blind vote. A lot has changed for me in the past year.
About a year ago, my wife Meghan wrote a letter to our district assembly people, Linda Stender and Jerry Green, as well as to our district senator, Nick Scutari. Little did we know, both Stender and Scutari had been instrumental in the passage of New Jersey’s original medicinal marijuana bill.
At the same time, Meghan’s father, Gene Gatens, noticed that Sue Livio of the Star Ledger had been writing stories about the condition of the New Jersey Compassionate Use Medical Marijuana Act. He sent a letter to Sue letting her know our situation.
Both of these actions, neither of which we thought would lead to anything, set the ball in motion. Scutari and Stender both replied and wanted to do something. Sue wrote a story and got our plight public.
In the meantime, we had discovered the Coalition for Medical Marijuana-New Jersey. The amazing people there helped us out a lot and helped us understand how to engage politicians. Longtime activist and CMMNJ board member Jim Miller was especially helpful.
Soon after the letter to our representatives, they decided to start up a bill to help. This bill aimed to reduce the number of doctors required to sign off for a minor and allow edibles – the initial bill only allowed lozenges. We needed something like an oil for Vivian as she was 2 years old and on the Ketogenic diet; a toddler cannot suck a candy and the diet requires a carb free delivery mechanism. Lastly, and most importantly, we needed to lift the 3-strain limit imposed by the department of health. The limit made it so dispensaries could only grow 3 varieties of cannabis. Vivian, with her seizure disorder, needs a strain of cannabis much higher in CBD. The dispensaries had the impression that patients only need pain relief (THC), and looked at the idea of dedicating 1 of their 3 legally allowable strains to a very low demand high CBD strain as economic suicide. By lifting the limit, dispensaries would take no financial hit if they grew a few low demand plants.
As the bill gained momentum, other media outlets picked up on Sue’s story and we were soon featured on Telemundo, NBC NY, ABC NY, CBS NY, FOX NY, Chasing NJ, NJ News 12, and covered in numerous radio programs and print publications, including Ladybud. Jan Hefler picked up the story and covered us near Philly and Trenton as closely as Sue did up north. Fortunately, both of our jobs were understanding enough to let us do what we needed.
It was sometime during this period when we realized we were advocates and activists. It just happened. All we wanted was medicine for our daughter.
We were spending more and more time with the media and getting text messages from Representative Stender. It was surreal, exciting, exhausting, frustrating and stressful all at once. We often wished Vivian did not steal the spotlight and that some other little kid did, but that’s the way the media rolls. The smallest, most vulnerable makes the story, and Vivian fit the bill.
I applied what knowledge I got from the CMMNJ members in dealing with media and politicians as best as I could, but I always wanted to just be a father in this. I never wanted to come across as an activist. I guess advocate was the role I was trying to take on.
Of course, the big money shot was what Sanjay Gupta has now dubbed “The Dustup at the Diner.” The bill to reform the existing law had passed the assembly and senate with an overwhelming bipartisan majority. It got to Christie’s desk and languished. The bill was close to ending its time limit when he came to Scotch Plains.
Christie was fucking with us. Not just us, but all of the people who could benefit from the changes (edibles were for all in the bill, not just minors and the strain limit, I knew, would help more than just children as more people learned about the other beneficial cannabinoids). If he wanted to veto it, he should have just vetoed it right away. If he was to pass it, why not just pass it? He refused to talk with our world renowned neurologist Dr. Orrin Devinsky. He refused to talk to medical marijuana researcher/activist Dr. Sunil Aggarwal. He refused to talk to us or any other patient who could be affected by this. What could he possibly be trying to learn if he didn’t want to talk to experts outside of his inner circle?
We were at the Jersey Shore on vacation – if you can call it that when you have a child with Dravet who cannot go in the sun or outside and needs somebody to constantly watch over her – when we got a call from Representative Stender saying Governor Christie would be in our hometown of Scotch Plains that fateful Wednesday, a few days after the original “Weed 1” Gupta documentary aired.
My first question to her was, “Is he coming to Scotch Plains to sign the bill in Vivian’s home town?”
The answer was no. He was coming to pick up an endorsement from our democratic mayor for the upcoming election. (Sound familiar? Fort Lee?).
I was furious. The bill was still on Christie’s desk, days away from a default passage (if he took no action, the bill would become law). He had the nerve to come to Vivian’s town, my town, while the fate of my daughter sat on his desk collecting dust. Fuck. No. He had refused to meet with us. I had to take the opportunity.
I left my vacation and drove up 2 hours from our rented beach house back to Scotch Plains. I desperately wanted to bring Vivian with us, but she was having a terrible day. Meghan stayed behind with her and rallied the facebook troops, who rallied more who rallied more. We had friends, the Richers, in Scotch Plains who put up signs all along his route. I got home and quickly took a sharpie to a t-shirt and went to the diner.
What was I going to say to him? What was my grand plan? I had no idea. After waiting 2 and a half hours and finally hearing his voice enter the diner, I still had no idea. I guessed I’d just ask him what was taking so long with the bill.
I was scared for myself. I’m not a violent person, but Christie has a history of being a world class dick. Would this father, pushed to the edge, break and swing if Christie gave me lip? At least my mom was outside and would see me being taken by the police and could arrange a lawyer. It didn’t come to that, fortunately, but I was shaking the whole time.
After he dismissed me, I uttered that life changing sentence “Please don’t let my daughter die.” I don’t know where that came from. It was not planned. It was not a stunt. It just happened. And it got a lot of press.
CNN, having just aired Weed 1, picked up on the events in NJ and capitalized on the moment. The push to reform the NJ law went from a local news story to national news overnight. I could never have imagined the life we have. Now, because of that, we are in Colorado and were part of the Weed 2 documentary.
We’re glad the filming is finally over, and we are returning to “normal” life. But other parents – as well as the media – continue to ask us what’s next and what advice we have to offer.
First off, as a parent you need to keep in mind what you’re fighting for. To loosely quote Jason David on the advice he gave me before my first CNN interview, “you’re not advocating for marijuana, you’re advocating for something at that will help your child. If dog shit is what would beat Dravet, you’d be advocating for dog shit. It’s not about the cannabis, it’s about getting access to what will save your child’s life”.
As far as CBD-only legislation, advocates should also keep in mind that there is enough evidence around the country to show that many seizure patients need more significant levels of THC. There is a lot of data coming out about the benefits of CBC and CBN and THCA.
And what about a child with Leukemia or another cancer? My uncle died from ALS several years ago, another ailment where cannabis is showing promise. Should somebody like him have been told to fuck off? Should my friend with MS be told, no, you have to suffer, my kid is more important than you? At the end of the day, we are still not sure what all works for each ailment and for each patient.
Has there been some success with Hemp? Yes. A little, but yes. There has been some reported success with even the infamous “industrial hemp oils” like RSHO. Minor success. I understand these states are different. Tennessee? Alabama? Mississippi? Heck, when I was driving out to Colorado, I avoided the southernmost route because I didn’t want to risk driving through some of those states with NJ license plates.
But guess what, these red state politicians who say they can’t pass a MMJ law? You voted for them for some other reasons. Clean up your house. They serve you. Did Jim Miller compromise as his wife approached death in NJ? No.
And even in New Jersey, the fight is far from over. I’d love for somebody to ask Governor Christie, “In light of the Wilson’s having to move to get the medicine they need for Vivian, and in light of the death of Sabina Rose Joana as her parents tried to negotiate the program, do you think it’s time to start reconsidering your position/opinion about the New Jersey Medicinal Marijuana Program?”
Finally, parents still need to realize that marijuana is not the scary drug they think it is. I’ve you’ve ever taken it yourself, you already know this. If you haven’t though, don’t believe the prohibitionists. Parents of severely ill children need to realize that no worst case scenario is worse that your child’s prognosis. Take a look at the alleged side effects of marijuana and compare them to the scientifically documented side effects of the drugs your child is currently taking.
Be loud, be proud, and don’t be afraid to say “I want to give my child cannabis.”