Medical cannabis: Anecdotes may not be enough, but they have power

Every year that I have been a teacher I have had my senior students write opinion pieces. I have told them to write about something they feel strongly about. It can be humorous or serious as long as it is writing in that style. They need to use language features; metaphors, rhetorical question, listing. They need to back up their arguments with fact, but push the boundaries with emotive language.

Each year the topics vary, but I can always guarantee there will be at least one student who writes about legalising marijuana.

In previous years I have smiled and nodded and said go ahead, hoping maybe they will produce something compelling. Do their research. Prove a point. Make a well informed argument. Dig a little deeper than stoner rhetoric and show me they know what they are talking about.

I never dissuade them from writing those pieces in part because I want them to write something brilliant. I want them to pull out of the hat what I myself cannot do.

I have been wanting to attempt my own piece about medical marijuana but, unlike my students, I have held off. I want to say something, something big. But I don’t want the importance of the issue to be lost because I don’t have all my ducks in a row. I want facts and figures and the ability to write a piece which has science behind it. I don’t want to just deal in anecdote. I want proof.

But that’s easier said than done when large scale testing and research is difficult to do with a controlled substance. While there are small studies showing some promise, I could not find any robust longitudinal studies which show long term side affects and benefits. (I would be happy to be proven wrong on this, point me in the right direction!)

That makes this a hard argument to win. I can appeal to emotion. I can point out hypocrisy in the world of pharmaceuticals, when drugs that are prescribed daily for children with seizures have massive and debilitating side affects, but medical cannabis is a restricted drug. I can tell you about the children of parents I know who have had positive results in their own trials with medicinal cannabis. And those are all true, but despite my best efforts, I end up relying on anecdote to prove my point. But then I started to wonder what was the problem with relying on anecdote, here on my blog? Isn’t that what the blog and podcast is all about? Sharing stories? Isn’t there power there?

In my hunt for facts, I saw myself as the parent of a child with seizures who has tried every pharmaceutical drug on offer with no results, or worse, with negative results. I felt the sinking feeling after the doctor tells you that if the first three drugs don’t work the chances of finding one that does shrinks exponentially. I saw myself anxiously waiting to see if my child is in that rare position of not improving with anti seizure drugs and then realising that they are. I felt the cold feeling of doubt when trying to research the alternatives and so much is left up in the air, a game of trial and error. Doses, strains, THC, CBD, leaf or oil. It’s immobilising.

This position is not hard for me to imagine. Eva was at high risk for seizures and I was always on edge waiting for them. I used to watch her movements closely, sometimes second guessing an arm flail or a head turn and worrying, constantly, about what seizures would mean for her. Would I spot them if they came? How would they affect her already delayed development? Would she be in pain?

I can put myself in those parents shoes, but for many that situation is beyond imagining. I think it’s about time we make it less hard to imagine it. We need to bring that situation into your living room, through your front door. In that sense, the anecdote has more power than the facts and figures. It puts a human face on this political hot potato.

Because while I only had to second guess and worry about the potential for seizures, I know mothers who have had the reality of seizures as part of their child’s life for years. They have lived with 100 or more seizures a day and watched as their lives, and that of their child, are taken over in the management of that. Imagine the fear when traditional medicine is failing you, but finding out facts and concrete evidence about alternatives, like medicinal cannabis, is almost impossible. Imagine watching your child suffer the sometimes debilitating side effects of legal, pharmaceutical drugs, which don’t actually stop the seizures, but not being able to try the alternative because you live in a country or state where medical cannabis is not yet legal. Or it if is, you have to jump through firey hoops and pay exorbitant prices just to get there.

 

Even after my reading, squinting at my computer screen, scrolling and noting down facts, I don’t feel informed enough to tell this story myself. I don’t have all the answers. I don’t have the answers for the lack of research. Or for the fact that because of the desperate needs of patients, people are being charged extortionate amounts of money for these products (in NZ a month of the newly approved Sativex will set you back $1,000). Or for the questions around development when these products are consumed by children and babies. We need world wide research and funding to answer these questions.

But what I do have is a parent of a very special little girl who has found some relief with medical cannabis and can talk about it. The next episode of the podcast is going to be with Meghan Gatens Wilson who relocated with her family from New Jersey to Denver, Colorado, so that her daughter, Vivian could take medicinal cannabis as a potential medicine for her seizures. Seizures which otherwise may have killed her.

I am so excited to talk to Meghan and find out about her family’s journey across the country for her daughter’s health. It isn’t every person who makes that kind of sacrifice, uprooting their whole family, leaving behind jobs and a house and their family and friends, for the medical treatment for their child.

While I know one anecdotal story isn’t proof. It isn’t enough, just by itself. But in lieu of major clinical trials, we need to be paying attention to the human stories and the lives that are being affected by these laws. Because they are at the coal face of this issue, and their experience count.

I have realised through the blog and the podcast that one story can’t change the world. But it does have ripples. One person’s story and experience can have a profound affect. So while I can’t write an article that will change the laws around medicinal marijuana, I don’t have the words for that, I can share this story, and give a glimpse into a life that is worth saving. A story worth telling.

 

3 thoughts on “Medical cannabis: Anecdotes may not be enough, but they have power

  1. Bonnie Dewart

    I am looking forward to this podcast. Jonathan Coleman, Minister of Health, is clearly afraid at the moment to give this issue due consideration. So any groundswell of opinion and these stories are vital if there is to be any hope of a change in the law, and relief for those in need.

  2. Maria Grace

    It’s interesting to see you bring this topic up, because on Sunday – Mother’s day – I looked out the window and saw an ambulance parked in front of my neighbor’s house. I called out to my husband and together we looked and hoped that it wasn’t an “actual” ambulance – like, maybe they were just parked here whilst they were sorting out paperwork between calls or something.

    But then in the afternoon when I called my neighbor asking if they wanted to play with us (she has two kids the same age as ours), she said no and explained that her daughter had been seizing on and off all morning, and that’s why the ambulance had been there. They’d spent the whole morning at the hospital checking her daughter out, and making sure she was alright.

    And because of that I’ve been thinking about seizures on and off for a few days now, and now I came here to see that you’re writing about them also.

    1. Tessa Prebble Post author

      Oh that poor family. Seizures (for me at least) are just one of the scariest conditions. There’s so little you can do and you have to sit by and watch you child go through that.

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