Illustration by ALEX FINE
We just learned the sad news that New Jersey medical marijuana activist Diane Riportella succumbed to ALS on August 31st. Riportella’s struggle with ALS and her quest to get medical marijuana legislation passed was the subject of a July 2010 cover story we wrote for PW. Here is an excerpt:
Of all the shitty ways to die, ALS is arguably the shittiest. Also known as Lou Gehrig’s disease, ALS stands for amyotrophic lateral sclerosis, and in short it is slow death brought on by the steady and methodical withering of the nerves that control your muscles. First, you can’t button your shirt. Then, you can’t walk and eventually, you can’t breathe. The cruelest irony is that the disease does not affect higher brain function, and so even at the very end, you are a fully present mind trapped in a lifeless body, a ghost in a dead machine. Upon diagnosis, most victims live three to five years. A small percentage live for up to 10 years, but only with the assistance of a ventilator, and few would call that living. There is no cure. The hardest part of enduring ALS—harder than the burning ass, the complete helplessness and the terrible return to infancy—is maintaining the will to live. That’s what marijuana did for Diane Riportella—it made her not want to die.
“It alleviates the pain and it helps me eat because I have no appetite,” says 54-year-old Riportella, lying in her bed on the second floor of the upscale home she shares with her husband in one of the tonier Zip codes of Egg Harbor,
N.J. “But more importantly, it puts a smile on my face and makes me at peace with all this,” she says, gesturing toward the vast array of pill bottles on her night stand and the tank of oxygen with the thick, white accordioned snake that connects it to the respirator mask she has removed to answer a reporter’s questions. “It makes me feel like I could live another day with this disease.” She asks her husband to sit her upright and frowns as she shows off her limp, withering limbs that hang off her body like wilted branches. It wasn’t always like this. Before she was diagnosed three years ago, Riportella used to be a fitness trainer at the gym where she met her husband, Paul, 13 years her junior. “Yeah, she’s kind of the original cougar,” he says with a smile. She ran marathons to raise money for leukemia and breast cancer research, raising nearly $200,000 over the years by her reckoning. She was always helping out others in need. She even cooked eggs for clean-up workers at Ground Zero after 9/11.
Advancing the cause of medical marijuana will likely be her last fight. And she has fought hard. Riportella has been outspoken about her use of medical marijuana and testified before the New Jersey Legislature, along with other terminally ill advocates for medical marijuana, imploring lawmakers to pass the Compassionate Use Act, which former Gov. John Corzine signed into law Jan. 18 as one of his last official acts as governor. “That’s what turned the tide—the stories of patients,” says Roseanne Scotti, Director of the Drug Policy Alliance NJ, which advocates for a more rational and humane response to the drug issue, and which played a key role in recruiting terminally ill patients who were self-medicating with marijuana to testify before the Legislature. “You can get all the peer-reviewed scientific journals arguing about molecules and receptors, but that’s not nearly as persuasive as a person with MS standing in front of you telling how nothing worked until a doctor told them off-the-record to try marijuana and it brought them instant relief from their pain and suffering.”
The law was scheduled to go into effect on the first day of July and if Corzine was still governor, almost everyone who has been involved in the passage of the law agrees, that timeline would have been met. But last fall, voters replaced Corzine with Republican Chris Christie, a former federal prosecutor. New Jersey’s Compassionate Use Act has been on the slow train to enactment ever since. Last month, the Christie administration asked for—and was granted by the Legislature—a 90-day extension for implementation. But Riportella, like many advocates for medical marijuana, worries that
[…]
Meanwhile, people are dying. Though the Christie administration has been granted a 90-day extension, time is running out for people like Diane Riportella and she can’t go to the Legislature for more. She’s already outlived her health-insurance policy. Two months ago, a respiratory infection nearly took her out. In that time, she’s had no access to medical marijuana. At first she was too sick to smoke, and by the time she pulled through and bounced back her source had dried up. Instead, she has had to rely on morphine, which is delivered to her house via Fed Ex unmolested by law enforcement. She doesn’t like morphine, it makes her dopey and sleep all the time. And she’s already grown addicted. Her face is flushed red and she has chills, which she says means she is going through withdrawal. She glumly asks her husband to give her another dose, and he shoots it into her mouth with a syringe. Then he puts the oxygen mask back on her as she waves a glassy-eyed goodbye. Soon the bedroom sounds like the inside of Darth Vader’s head as he covers her in a warm blanket and she drifts away. MORE
How is it that the black market has been efficiently distributing marijuana to hundreds of thousands, if not millions, since the dawn of the 20th Century and continues to do so to this day, but the state of New Jersey still can’t get prescription pot into the hands of just 18 registered users two and a half years after the law went into effect? Diane Riportella’s greatest fear was that she’d die before the law she worked so bravely to get passed would become a reality and sadly enough that’s exactly what happened. The Christie administration should hold their heads high: In what has become their standard operating procedure of prioritizing public posturing over private suffering — and in direct and flagrant violation of the law — they managed to exponentially increase the misery index of a paraplegic woman’s miserable death. Well played, Fatman. May the black angels of karma be just a merciless with you, Governor, when you’re recovering from your inevitable quadruple bypass.