Monday, April 7, 2014

Bandwagons, bait and a seven dollar poppadom

All my life I've had a problem marching to somebody else's drum beat. I used to list one of my hobbies as jumping off bandwagons- not just to generate laughs (though it did), but because it was a truth about my compulsive reflective practice that I'd understood for a long time.

See, the trouble with bandwagons is that people stop thinking. They jump on because it seems like a good idea at the time, or because everyone else is doing it; once they're there, it's comfortable to just blend in without question. Because, Peer Pressure.

Ah, the Power of the Flock. And the flock mentality around cancer fundraising is particularly strong.

The desire for a symbolic table-turning on the Freeloader- yes, it's almost overwhelming, and it seems to be pretty well universal. So many times I've heard my fellow players in the cancer tournament express the desire to do something that turns their personal shit sandwich into something closer to a plate of chocolate brownies. In the end, many of them pour a lot of energy into positive, constructive activities like painting the entire world pink and walking in endless circles.

Because, Cancer.

I know, I know. Call me a cynic. But my reflective mind will not allow 'Because, Cancer' to get even as far as first base without a drug test. ('Because, Peer Pressure' never even made it out of the team dressing room.)


Lawrence of Arabia
Don't get me wrong. I have no wish to call universal bullshit on cancer fundraisers- not at all. Full disclosure: last Saturday night I too walked in endless circles, as part of the 20-hour local Cancer Council fundraiser marathon known as 'Relay for Life'.

And I'm proud of what I did, and of what we did as a group. I'm proud to have been part of the effort that extracted a significant amount of money from a community where hundred dollar bills aren't exactly lying thick on the ground.

We need the fundraisers. We do- desperately. It's bleedingly obvious that as long as most taxpayer funds are poured into shoring up politicians' retirement schemes, buying anachronistic weaponry to fight unnecessary wars and destroying the environment to keep up with the Joneses, we'll have to fund most of the research ourselves.

And that means getting people onto that damned bandwagon. And that means putting out people-bait. And people-bait means lots of hard-working, dedicated people tirelessly creating these gimmicks, because they need to do whatever works.

I accept all that. I accept that getting people to put their hands in their pockets and come out with something other than a used Kleenex is an art form requiring a certain knowledge of the baser aspects of human nature. (You know, the aspects that keep Joe and Jenny Average avidly viewing The Biggest Apprentice Block-Loser and anything about the Kardashians. Please pass me that large brown paper bag.)

But me? I can't help critiquing my actions, and the actions of those around me. I yearn for authenticity, and I strive for consistency in my professional actions. I hate being a hypocrite, and I can't abide it in others.

And so last Saturday night, as I walked round and round in circles for quite a large part of the 20 hours- oh wait, 21, because of course I had to do it the year it coincided with the end of Daylight Saving- last Saturday night I found myself examining the whole concept in detail.

It started with a seven dollar poppadom.


I am, I admit, a little bit of a food snob. You know, to the extent that I prefer my food to be edible- particularly when I've just walked far too many kilometres in 30 degree heat and it's a good eight hours since my last proper meal.

So when the woman running the Indian food caravan lifted the lid of the bain marie and exposed the vegetarian curry that I'd just paid seven good dollars to have slopped onto my plate with the might-as-well-eat-cake jasmine rice- hunks of deceased khaki and cream vegetable matter in a sea of curry-coloured hot water- it was, um, a little shattering.

I'd chosen the vegie curry purely on nutritional grounds; it seemed to be the only vegetable matter available at the entire venue. But in the end, the only thing on that plate that was edible was a lonely and anorexic poppadom, which in terms of nutrition was basically a slice of hot, crisp flour dripping with cooking oil. As I crunched it sadly, my stomach rumbling, then dumped the rest of the loaded plate unceremoniously in the bin, I reflected on the peculiarly inappropriate food available to cancer 'survivors' (and I shall get to that word later) at a fight-to-end-cancer event.

As I looked around the grounds at the other choices, I realised that the high-GI jasmine rice and cooked-to-nutritional-oblivion vegies were the high point on an increasingly slippery slope. The sausage-sandwich and bacon-and-egg-roll tent seemed to have missed the Cancer Council memo about processed meats, high fat foods and empty-calorie white bread. Everywhere I looked, people were selling sugar hits- cupcakes, lollies, soft drinks. Even at the afternoon tea for 'survivors', I'd been offered plate after plate of white bread sandwiches and sugary dessert slices; some high quality fruit platters were the only 'on message' food in the building.

Sitting there wearing my 'survivor' sash and reflecting on how hard I'd worked to change my personal eating habits, I was surrounded by wall to wall WhatTheFuck. And I asked myself, to raise funds for cancer research, do we really have to offer people the exact foods that are contraindicated?

Because, Logic.


And you see, I've just jumped off the bandwagon again. The message of the opening and closing ceremonies, alongside remembering lost loved ones, was overwhelmingly expressed as a positive. Hope had a separate ceremony all to itself. And here I am jumping off the positivity wagon and finding fault, when perhaps providing this sort of crap food is a really good way to make lots of money.

Is it wrong of me to suggest that a level of hypocrisy was accepted without question? I put this idea forward with a sense of trepidation. So many people gave their time, their efforts, their peace of mind to make the event a success. Already over $100,000 has been raised, with funds still to come in. This is, without doubt, a huge achievement in a financially challenged country town.

Does it matter how it was done? Do we have to stay on message all the time? Is that a reasonable expectation?

To me, it would have been more considerate to provide at least some healthy food choices for the many participants who've been deathly ill and who are now trying desperately to stay well. I walked those many circles fuelled only by determination and the small bag of dried fruit, unsalted nuts and plain dark chocolate I'd had the foresight to bring with me. Because, Bushwalker.

Am I a lone logical voice for health in a wilderness of economic realities? I honestly don't know. Sometimes I feel like an intruder from another planet.


And then, the 'survivor' sash. Again, I'm an alien.

A very large part of me spent the day and night wanting to tear it off and run around screaming WTF, we don't know whether we're survivors until the moment we die of something else. It felt like a lie, walking around with that word across my body.

Worse, it felt like I was tempting fate. All I could think of was my friend Lyn, who'd been pretty much at my stage of 'survivorship' when she started throwing up and falling over thanks to the brain mets.

A small but stubborn part of me, however, knew that the people who'd worked terribly hard to make the event a success would be deeply hurt if I decided to start a one-woman rebellion. And so I'd better shut up and put up. Or rather, put on.

So I did. Because, Compassion. Consideration. Kindness.

I've survived the first diagnosis, I rationalised. I've survived the first year out from chemo.

For a compulsive honest, deeply reflective person, it was a confronting experience.


I wish I could say that I got over it, and remembered what we were trying to achieve, and everything was fine and dandy. But that wouldn't be true. My discomfort increased rather than settling. As the night went on and the speeches burst forth in all their hopeful glory, I became aware that only two categories of cancer patients were being recognised.

The 'survivors'.

The dead.

And I thought but wait, what about all the people with Stage Four disease who are still here?

Were they even invited?

It made me terrifically sad.

You see, people with Stage Four are off-message. They don't fit in with the whole fight-back We-Will-Eradicate-This-Disease-By-(fill in suitable close but suitably distant date) message of hope, because there's this uncomfortable awareness that most of them will probably be dead by then.

But they're not dead yet either, so they can't be slotted into the It's-Okay-To-Cry message of remembrance.

Should we pretend they don't exist, in the interests of fundraising success? Because, Awkward.


Unfortunately, I can't and won't buy that for one nanosecond. This far into the game, and running a support page as I do, I've grown close to a number of women with a ticking time bomb inside them.

They're still here. They want and need to be acknowledged; they deserve to be acknowledged. They're my friends, and I can't just sit here on a bandwagon that ignores them simply because they're awkwardly off-message.

Something needs to change. Because I know full well that this is not a situation exclusive to this event- it seems to be consistent across the board in cancer fund-raising. To be Stage Four is to be on the outer.

And when a dying woman declares that she'll have no pink worn at her funeral- not a single pink item on anyone- because she's so furious about the exclusion and the sense of being a failure for not toeing the 'curable' line, then it is time to call bullshit.

Lookin' at you, Amanda R., up there with the stars in the beautiful night sky. Because, Remembrance. And this is a relay, and I think you just handed me the baton, even though I am not classed as 'awkward' myself. 



Perhaps after writing this I'll not be invited back to another Relay event, despite ending up as the impromptu Master of Ceremonies for this one and giving a sincere speech in support of the Cancer Council which was very well-received. I did enjoy being the MC. I did enjoy delivering my speech. While I was doing that, it felt completely authentic and I felt like I was doing good, contributing to the effort, going the extra mile.

I hope I do get invited back.

I hope that I can somehow help make some changes. Would it be so hard, really, to make the sandwiches on whole grain bread? To limit the number of teams selling sugary crap?

Would it be so hard to consult with Stage Four patients, to provide wheelchairs or comfy chairs or transport if necessary, to find a word for their sashes that sits well with them? If 'survivor' and 'carer' are the only options, it does feel like active exclusion.

And I'd happily volunteer to make the speech that acknowledged the presence, the very existence of people with terminal disease. Perhaps it would do everyone good to hear 'anger' acknowledged as an emotion that needs to be released, along with the tears of remembrance for those who've already crossed the finish line.

I could do that.


It's two years to the next Relay. Perhaps by then I'll have the energy to follow up these reflections in an active way. Right now, the thought of being on any sort of committee makes me want to dive into the ocean and swim to New Zealand.

Till then, all I can do is be the change I want to see.

Eat well, and help others to do the same if I can.

Hold my hand out to my Stage Four friends, be listening, help them to insist on their rights.

I can do that. Because, Voice. Leader. Creative. If I must insist on jumping off bandwagons, the least I can do is start making a better float and join the parade.

1 comment:

  1. Well said Candy - is it that hard to have some healthy options ?
    The survivor tag wouldn't sit well with me either - Cancer is shit and having two different cancers to survive is even more difficult. The odds feel stacked against me.
    ? Thriving ? LIVING ? I don't know.
    I think I'd rather run a half marathon the weekend our relay for life is on (same same) and raise awareness and $1000 that way.