"What would Cheryl do?" Medical marijuana and MS

The Greater Delaware Valley chapter of the National MS Society unceremoniously pulled the plug on the Coalition for Medical Marijuana--New Jersey (CMMNJ) after originally offering us a table at their March 23rd "Beef and Beer" fundraiser in Philadelphia. They waited until I showed up to have a volunteer tell me that there was no table available, and when pressed for an explanation it was explained to me that someone associated with Clear Channel Outdoor threatened to "pull sponsorship" if CMMNJ was allowed to distribute information about medical marijuana at the event. So they acquiesced to coercion and promptly sent me packing. http://cmmnj.blogspot.com/2013/03/ms-society-refuses-medical-marijuana.html

In order to fully understand how unacceptable that is to me, I find it necessary to share some otherwise very personal information. I say this especially to the people running the show at the MS Society's Greater Delaware Valley Chapter, whom I will contacting and offering a link to this blog as well as the one preceding it. This way, they will at least have the benefit of being aware of my intentions ahead of time, unlike the blind side they provided me with.

Although it was almost a decade ago, I remember June 4th, 2003 as if it were yesterday. It was a Wednesday. It was also the day that I had to tell my wife that she was about to die. Two days earlier we had checked Cheryl into the hospital because a weekend bout of chest congestion was causing her to breathe more rapidly than normal. We were assuming that she might need some IV antibiotics, and maybe some nebulizer treatments and additional IV fluids. There had been a noticeable decline in her already compromised condition over the previous few months and I wasn't taking any chances. Multiple sclerosis already had a formidable list of conquests over Cheryl's rapidly weakening body and I didn't want to see that list grow further.

I was sitting with Cheryl while she slept when a nurse called me into the hallway. She informed me that Cheryl had lost her ability to swallow properly. She was slowly aspirating liquid into her lungs and would be needing a feeding tube to survive. So this was it. It had finally come time for me to stand up for Cheryl one last time. She had been very clear about her wish to have no extraordinary means taken to prolong the inevitable. Having no feeding tube was at the top of her list, and it was up to me to make sure that request was honored. Cheryl had lived her life with dignity, and she wanted to die with dignity.

I went over to the chair by her bed and sat there watching her sleep. She had endured so much during the two decades that I had known her, even beyond her struggle with MS. Her youngest son, Ricky, died from an accidental gunshot to the head 20 years earlier and her only daughter, Deena, had been gone for four years, having been killed in a car accident in Oklahoma. Beyond all of that, she suffered physically every time she painfully put her deteriorating body on display while publicly challenging medical marijuana prohibitionists to explain their views to her personally. She would use civil disobedience as a tool to embarrass them when they refused. http://www.youtube.com/watch?v=4KdxUcwAOkI

When she finally woke up I told her that I had something important to tell her...that she was about to be with Ricky and Deena again. She looked puzzled at first, then she closed her eyes and acknowledged my meaning with a slight smile and a nod of her head. She missed them so much and she believed that they would all be together again someday, and here I was telling her that day had finally come. Then Cheryl opened her eyes, turned her head slightly to look at me, and and softly said, "Aww honey...I'm sorry." Her concern for MY well-being at a time like that would surprise nobody who knew her. It was also a transition to something else that I needed to tell her while there was still time. I had made Cheryl a wedding vow almost 19 years earlier, promising to do for her whatever her arms or legs could not, till death do we part. Now that we were about to part, I felt that she deserved to know that I didn't feel capable of continuing on as a medical marijuana advocate without her. Although Cheryl did what she did for everybody else with multiple sclerosis, I did what I did for her. I relied on her strength to realize my own, and now she would no longer be here to help me keep my eyes on the prize.

She looked a little confused as I tried to explain my doubts about being able to continue on as a medical marijuana advocate without her. Then she softly but definitively said, "But you HAVE to," followed by rhetorically asking me, "Don't you wish someone had told us about medical marijuana long before we found out on our own?" Then she paraphrased what she had first told me a dozen years earlier when I asked her if she wanted me to quietly take care of her with cannabis, or go public with our discovery. "We shouldn't wish that somebody would have done something for us that we aren't willing to do for someone else." In an effort to give her closure, I promised that whenever an opportunity presented itself to spread accurate and up to date medical marijuana information to MS patients, I would ask myself,  "What would Cheryl do?" I told her that if I felt that she would have shown up, I would show up and do the best that I could without her. She died peacefully three days later.

Which brings me to the situation at hand. I have a promise to keep. I know exactly what Cheryl would do to ensure that MS patients in the Greater Delaware Valley are not denied access to medical marijuana information. SHE would show up at one of the 14 upcoming "Walk MS" fundraising events being sponsored by the offending chapter and hand out medical marijuana information to participants directly...the same information that was censored at the March 23rd fundraiser. The locations and dates of those walks can be found here: https://secure3.convio.net/nmss/site/SPageServer?pagename=WLK_National

Cheryl began handing out information in New Jersey about cannabis therapeutics relative to MS at the 1994 Toms River MS walk, and continued the tradition at various Jersey Shore locations over the next nine years. Her last time out in public was at the Ortley Beach walk in April of 2003, six weeks before she died.

"Cheryl's last Walk MS event, at Ortley Beach NJ, April 2003" 

She showed up at these events in response to the National MS Society's deliberate and purposeful underestimation of the potential benefits of cannabis for MS patients in the '90s. They would say that they could not recommend cannabis use for MS patients until there were more studies done, while refusing to do the research that they insisted was necessary to get accurate information. They preferred to be ignorant by design.

And now? Using research performed by organizations other of their own, the National Multiple Sclerosis Society's National Clinical Advisory Board concluded in its 2008 "Treatment Recommendations for Physicians" that "it is clear that cannabinoids have potential both for the management of MS symptoms such as pain and spasticity, as well as for neuroprotection." They then go on to estimate that 15% of MS patients already use cannabis for symptomatic relief. However, the real bombshell was their observation that "an unexpected result of basic research, as well as some evidence from clinical trials, led to the discovery that cannabinoids may also reduce neuronal damage." Reduce neuronal damage? They continue on, saying that a reduction in neuronal damage could result in "possibly limiting disease progression" and that marijuana could be used "perhaps as an add-on to other treatments," concluding that "in some ways this is even more exciting than its effects on symptoms such as pain and spasticity."

Really? Let me be clear why that is so exciting. In Cheryl's case, limiting disease progression means that she might have been with me longer and she would have suffered less. This information was prevented from being handed out to the 250 people attending the March 23rd fundraiser.

The success and scope of my response to the censorship of medical marijuana information at the MS Society's Greater Delaware Valley chapter fundraiser is dependent on the amount of help I have. I can't cover all 7 walks happening on April 21st, and I can't cover all 6 walks being held on May 5th. However I will enjoy the May 4th event at the Philadelphia Museum of Art and will be able to attend one walk on each of the other two days that they are being held. I currently have two potential offers of help, meaning that in a best case scenario we could cover as many as half of the 14 scheduled MS Walks in the Delaware Valley.

Anyone wanting to help make it a clean sweep and deliver a message that will be heard loud and clear, you can get in touch with me at pot4ms@yahoo.com. I will be able to make your participation as easy as possible. I can guarantee you, virtually everyone you hand a flyer to will thank you, especially those who are walking for an MS patient who is one of the 15% not waiting for the blessing of the Multiple Sclerosis Society before reaping the benefits of medical marijuana.

Jim Miller, President
CMMNJ