The Doctored Snapshots Of You People See When You Have Cancer
I was watching a show the other day and one of those scenes we’ve all witnessed – the “drug addled-club goers rave” scene, as I call it, was showing. You know, where 20-somethings who are all amazing looking are partying with abandon and you can easily spot the drug dealers because, as everyone knows, they always wear dark sunglasses inside and are surrounded by models. Just like real drug dealers. (LOL)
Now, although that might sound like an appealing watch to some of you, this post has nothing to do with any of that. As a complete non-sequitur, as I was watching, one of the strobe lights on the dance floor hypnotized me for a few seconds and I suddenly realized – a strobe light is exactly how people who aren’t us experience our cancer.
Shining a light on the dark times
A strobe light basically takes snapshots of you in real-time and strings them together to form a moving picture of your life, as it were. The thing is, in between the time when the strobe light flashes, the viewer has no real idea of what’s happening in those dark times, and "dark times" is exactly the right label. Dark because there’s no light, and dark because of what actually goes on with cancer when almost no one is watching.
All the viewer sees is a good day here, a missed party there, a trip to the ER now and then the rest is filled in with stereotypes, cancer tropes, and what they see on TV and movies. Most people never really get to the creamy Cadbury-egg goo at the center of what it’s really like to live with a horrifying illness like “The Big C.”
Snapshots of your cancer journey
If you consider it for a second, it really is a striking visual image. When cancer hits, most friends and acquaintances (and even some family) kind of default to the, “back off and see what happens” mode. This means they see you here and there, on good days and maybe some not-so-good days, but almost never see you when you are heaped over the toilet, puking your guts out, barely able to stand. Mainly because if someone texts you during those times to come for a visit your response would be something along the lines of, “sorry, my butt feels like it’s made of acid-fire and I think my liver just popped out of my mouth for a quick hello.”
So, again, when people do see you it’s almost always only when you feel up to it so they get snapshots of you in fair to good condition, and like anyone would, they fill in the gaps with the same – you under a warm blanket snuggled up with hot cocoa watching your favorite Great British Bake-Off episodes while feeling “a little sick.” Holy cow!! This couldn’t be farther from the truth, but because the strobe light only shines on you when you see others, that’s the movie that your zoetrope of cancer plays to anyone watching from the outside, which ends up being almost everyone who isn’t you.
Wishing the world would understand cancer
What does this mean, should we be getting angry and blaming others for making assumptions about our cancer? I get the urge, believe me. When people make assumptions about your disease it can be infuriating and demeaning and sometimes, like for me, when someone assumed that ginger cookies would make me feel normal again and kept on asking if “they worked,” it can be downright awful.
The thing is, most people only see that strobe-light, and since you always do your best to hide the worst when knowing you are being seen, it’s only natural people assume. It’s like giving someone a half-finished graph with only dots, all at the same height, and then asking them to draw what they think the graph should look like. They aren’t going to suddenly draw big dips in between the dots, only a crazy person would do that.
Now, I truly wish the world would understand cancer and know, instinctively, that there are big dips in between the times when they see you, I really do, but I can’t blame them for not knowing when all they have to go on is a few snapshots, most of which I have proverbially “photoshopped” by propping myself up as much as possible before appearing in public. Showered, not covered in puke, and with enough drugs in me to make a skeleton dance.
Always saying we're "fine"
Where does that leave us? Do we stop trying to prop ourselves up before visits? Should we just show up and give people an idea of what cancer really looks like? The terror, the pain, the dehumanizing effect of it all? Well, ultimately, I’ve come to realize that it’s probably not the best way to fight this particular form of ignorance. It just ends up making people not want to visit you at all, and it certainly doesn’t make them want to think about cancer in the slightest. Mainly it just makes people want to forget it all as fast as possible. No one likes being confronted with their own mortality – especially when it smells like vomit and Vicks Vapo-rub. The best thing I can recommend is just to tell people the truth when they ask how you are.
We always say we are “fine,” it’s pretty much the standard response for any queries about our cancer, but those days have to end. That strobe light effect we talked about above when combined with the whole, “I’m fine,” rigmarole only allows the misconceptions to burrow farther into friends and family’s virgin unknowing brains. Yuuuck! How’s that for a visual? The point is, it’s ok to say you aren’t fine, well, to a point anyway. I mean, if you want to tell people that you are fighting off the encroaching darkness that threatens to swallow you up whole and drag you down into a world of unending pain and nausea that stalks you every single day like the grim reaper in a slasher movie, you can do that, but I wouldn’t expect too many more gift boxes of ginger snaps. Try to soften the blow a bit, you’ll find it’s still effective and much less mortally terrifying to people, children, and small animals.
Start by telling people the truth
How to begin? Well, you can start by telling people the truth about the strobe effect. Right here, right now, I’m giving you permission to steal it. Explain to people that when they see you, they are probably seeing the best version of you, propped up short-term by pills, adrenaline, and hope.
Explain that in reality, things have been difficult lately and there have been more than a few times where you ended up staying in bed all day. Tell people that you burst into tears the when you finally had an appetite after days of nothing and you ordered your favorite comfort food from the local diner – meatloaf and mashed potatoes, only to find out that they forgot the gravy and you bawled like a baby and cursed the very air they breathe at that stupid place. Don’t like meatloaf? Well, whether its loaf or latte, if you have cancer, you’ve been there.
The point is, tell people that seeing small slices of you will never give the real picture of cancer, and don’t feel conceited for saying something like, “Well, I do make cancer look goooooooood.” Because in the strobe light of the outside world you do make it look good, no matter how bad you really are, because it takes strength, and that always looks amazing. Even if you wear dark sunglasses at night inside the club. Talk soon.
What type of blood cancer are you or your loved one diagnosed with?