By Al Graham
It was 2003 when I first heard of Alison Myrden. I know the year because it was just shortly after my first ever Crohn’s flare up, and the year I became involved in the cannabis community. As time went on, I wanted to get better educated about cannabis so started attending events to educate myself about the medical value of cannabis. At that point, I started seeing Alison on stage at rallies and part of the forums I attended in South-Central Ontario, and got to know her story and what she was about. Now, years later, Alison and I have come know each other a little better, and this past Christmas she took some time out of her busy schedule to talk to me about life and cannabis.
As we get older, we all have our aches and pains, but for Alison this started early in her life. At the age of 28 she was diagnosed with Multiple Sclerosis, but her doctors figure she has been dealing with it since the age of 10. Multiple Sclerosis (MS) is a chronic, often disabling, disease that attacks the central nervous system, which is made up of the brain, spinal cord, and optic nerves. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another.
The MS has slowed her down some, but she remains active and walks around with the assistance of a cane or walker. At times she uses a wheelchair if she has to go a distance or standing for a long period of time during a presentation. Laughingly, she tells me that she doesn’t have MS but has “a mess.”
For Alison, it doesn’t stop there and it only gets worse. Twenty four years ago she discovered that she also has Trigeminal Neuralgia (TN), a condition that affects the nerves in your face. Because of this condition, she has been dealing with facial nerve pain for 24 hours a day for the last 20 years.
While I can tell you it’s a nerve problem in the face, there is a lot more to this. So what exactly is TN? From an article in issue 15 of Treating Yourself, the writer known as “Ally” states that “Trigeminal Neuralgia is one of the most painful disorders known and may be second only to cluster headaches in degree of pain it produces. Like cluster headaches, trigeminal neuralgia is also known by many as the suicide disease. When describing someone suffering a TN attack some describe it as ‘They are begging to be killed.’ The trigeminal nerve is responsible for the transmission of all sensory information from the face and head. This includes temperature, pain, and tactile/pressure sensation. If this nerve bundle becomes irritated or damaged it can begin to malfunction in the most extreme way. The invigorating wind and sensuous touch can become the trigger for severe sensations of searing, slicing, stabbing, lacerating pain in the mouth, teeth, eye, cheek and ear lasting from a few minutes to several hours.”
The article goes on to say that “There are several ways in which the trigeminal nerve can become irritated and/or damaged through direct assault or more passive demyelination. The most common cause is believed to be vascular compression of the nerve bundle close to where it enervates with the brain stem. This pressure irritates the nerve interfering with its ability to function properly. Eventually the irritation results in demyelination and severe neural dysfunction. The dysfunctional nerve now fires erratically, becomes hypersensitive, and may no long be able to terminate a sensation once the corresponding stimulus has been removed. As a result, someone suffering from this condition will experience paroxysmal allodynia, the sudden onset of extreme pain initiated by non-painful stimuli such as a feather brushing the cheek. Other suspected causes include pressure from tumour, cystic spider bite in the right location, damage from multiple sclerosis, car accident, facial surgery or even body piercing.”
The Drugs
How do you battle a condition such as this? Over the years Alison has taken many drugs to battle the pain but nothing has worked. At one point she was getting a foot long needle stuck into her face as they searched to eliminate or freeze the pain but that didn’t work either. It got to the point where she was even prescribed cocaine. For a month Alison would go to the hospital, three times a week, in order to snort cocaine up her nose from the tiniest spoon she has ever seen. This treatment only worked temporarily for about an hour and then eventually didn’t help at all. She commented that it actually kept her awake for days at a time. From there they moved her onto heroin injections that are still happening. When she has surgery they give it to her intravenously so she can to deal with the facial pain while she is there. I asked her about Interferon, the drug I mostly hear about for MS sufferers. For Alison, though, she has never had to use Interferon because it doesn’t help her. While it’s good for people with relapsing or remitting MS, it doesn’t help with the type she has, which is Chronic Progressive MS.
Cannabis to the rescue
Back in 1994, well before Canada’s medical marijuana program even began, Alison was using cannabis to deal with her conditions. At that time she would carry a note pad prescription from her doctor as the only way to prove her use was medicinal. When I asked her how the police dealt with her she said that “the police let me go every time with no hassles.” She spoke of one incident while at Ontario Place, in Toronto, where she was off to the side medicating with cannabis when the police came along. They looked at her and then over to some younger people. The police left her alone and she feels that this was because of her walker being nearby and her age, though the police may have thought the cannabis smell was coming from the younger people nearby.
During the early 90s, with no medical marijuana program in effect and seeing the benefits she wrote, then Liberal Health Minister, Alan Rock seeking to be involved in drug trials with cannabis. She didn’t stop there, in offering to be a trial volunteer, and has now worked with some of the top doctors in the cannabis field—including Dr. Mark Ware of Montreal’s McGill University, Dr. Ethan Russo in the U.S., and Dr. Raphael Mechoulam in Israel. While we didn’t touch on the specific strains of cannabis that she medicates with, I know she speaks highly of Williams Wonder and Alison in Wonderland (a strain that has been named after her).
Family Reaction
In 1993, Alison’s father sadly passed away thus he never got to see the advocacy his daughter was about to embark on. She went on to tell me that her mother is a big supporter of everything that she is doing, and has done so much for her. Like Alison, her mother was desperate to get help with the unknown pain in her face. At one point, she became so desperate for answers that she contacted a writer at the Globe and Mail newspaper to get the story out. Her mom was hoping to help find someone to answer questions about, and address, her daughter’s health issues. At the time it upset Alison, but her mom wanted to let everyone know what Alison was going through.
Throughout our conversation, Alison kept bringing up her life partner Gary Lynch, a partner that she doesn’t know what she would do without. Gary, a web site designer and professional photographer, is involved in some way with everything Alison does, be it building her website <www.themarijuanamission.com> or taking pictures of her while she advocates. In the beginning, Gary’s family had concerns about Alison’s cannabis use, but as time has passed they have become more accepting of it. This building of understanding of cannabis as a medicine with Gary’s family has allowed her to medicate with a vapourizer inside their home or to smoke outside. She went on to tell me that Gary’s family is now more involved and more open towards everything that she is doing.
Advocacy
Alison prefers to be called a cannabis advocate verses being labelled an activist. This stems from seeing “activists” of any kind being given a definition, possibly by the press, as being someone out to create trouble. For her, things got started in 1999 when an article called “Woman Sends Mom to Buy Pot” was published in a national newspaper. With cannabis or medical marijuana not yet being legal, she received over 30 phone calls from lawyers from all across Canada looking to help her, as they expected she was going to need help very soon. This was because many of them believed that the police would come knocking on her door, but they never did. For Alison, and many others, advocating is a 24 hour job, or one that is just close to home. For her the phone rings every day, as the calls come in to her home from all around the world.
When Alison was working, she was with Corrections Canada. When she could no longer work she left her job like so many of us have to. Her position in corrections allowed her to join Law Enforcement Against Prohibition (LEAP), a group of former law enforcement workers who support the regulation of all drugs. She is still a standing member of the NDP, whom she once ran for as a candidate, as well as a very vocal speaker for another cutting edge organization called “Lawmen Protecting Patients” located in the U.S..
Considering her involvement in these groups, I asked her about her thoughts on resolving cannabis prohibition. She stated that “we need to legalize all drugs and this should have been done yesterday.” She says things are “getting worse and worse and that prohibition is the only problem and only obstacle.” She went on to say that “marijuana prohibition is the same as alcohol prohibition” so when I asked her about the situation in California she says she believes that “we have almost, or have, reached the tipping point and that we are on the right track.” She added “I’ve never had a mission like this one ever in all of my life. That’s how strong I feel about cannabis medicine, and I never want to see anyone go through with what we are.”
It doesn’t end there. As of Feb. 2011, with the recommendation of Dr. Ethan Russo and others, she now holds the position of New Canadian Patient Representative for the IACM (International Association for Cannabinoid Medicines).
Health Canada MMAR Proposals
When it came to the proposals for the MMAR Program, Alison had plenty to say. First off, she says “If a pharmaceutical company decides to take on our issue and become our supplier of raw cannabis, there would still be a very serious problem—affordability. There is no way people like myself, carrying one of the largest written prescriptions in the country, could afford to purchase and attain our medicine from anywhere or anyone but those who truly love and care for us. No one else can be trusted as this entity brings in far too much illegal activity and is known to be one of the world’s most lucrative ventures which are illegal drugs.” She also raises a concern about strain specificity. “Pharmaceutical companies [should] make the most common and easy to grow strains of medical cannabis more readily available, and finding one or more strains that help people like me with such unusual and hard to reach pain and health issues is of utmost priority, as these strains can be, and often are, difficult to mimic and then reproduce.”
As far as when it comes to personal control and future health concerns she states that “As one of the first recognized patients in Canada for consuming cannabis, I feel that tending our own medical cannabis gardens, or having someone we love and who cares for us, grow and tend our personal medical garden, [we should] have full control. Seeing as cannabis is virtually non-toxic and non-addictive, our health issues, when we choose to consume cannabis, remain our business.”
She would also like to see more improvements in alternative methods of consuming cannabis. If cannabis is going to be a medication for everyone, including older and young people, who have never smoked, then these alternative methods must be researched and improved for everyone. As she said “we don’t need to be forcing people to start to smoke at any age.”
Part of the present MMAR program asks that patients not consume their medication in public. They seem to want us to only medicate at home or maybe in a back alley out of sight. Forcing sick people to somehow get home quickly or dodge behind some building isn’t right. Do they ask people taking a pill before dinner while in a restaurant to go home to medicate or ask the person needing an inhaler to rush off home to be able to breathe? Of course they don’t, so why should medicinal cannabis patients be forced to do so?
Alison prefers to stay inside to consume her medicine with the assistance of a portable Iolite vapourizer, and likes to use it “wherever and whenever I can.” She went on to say “I stay right where I am more often than not because we have rights and I choose to exercise them.” For her the reactions have varied, but don’t usually faze her either way. She says she has been “reprimanded for smoking, lectured, and given a piece of peoples’ minds for choosing to do something like smoke or vaporize cannabis in public, just to feel better.”
Last thoughts
“I will always be right out in the front of everything when it comes to our rights, and I will never stop.” She goes on to say “I promise I will fight for these rights with the legal team we have assembled over the years, for as long as I am here. I will teach our country that no one is a second class citizen when we make choices regarding our health and, that again, if people do not exercise their constitutional rights, then people need to be ready to have them taken away!”
In closing, she says “thank you to the readers at Cannabis Digest so very much for their continued interest and thank you to Al and Cannabis Digest for the opportunity for my message to be heard.”
Websites:
Alison’s Marijuana Mission:
<www.themarijuanamission.com/>
Law Enforcement Against Prohibition:
<www.leap.cc/>
Lawmen Protecting Patients:
<www.lawmenpro.org>
Trigeminal Neuralgia:
<www.treatingyourself.com/images/issues/pdfs/issue15.pdf>
MS Society of Canada:
<http://mssociety.ca/>
Al Graham’s website is:
<www.peopleadvocatingcannabiseducation.org>
