December 27, 2012

Death by Facebook

Having cancer a couple of decades ago, I can only assume, must have been a private affair. Not so today. Cancer is everywhere; it has infiltrated our lives by touching many of our elderly, and increasingly, our young and fit. It now permeates our supermarkets, where items with pink packaging promise a better future, and our magazines, where celebrities have photo shoots under headlines that read ‘I’ll beat this in 6 weeks!’.

And increasingly, Facebook and the Internet are being used to communicate cancer and share the ways it changes our bodies and brains. The digital age allows cancer to leave the hospital and the confines of the beds in which we lay healing. The image of chemotherapeutics entering our veins is no longer the domain of the privileged few that choose to sit by our sides while we bathe in these medicines – anyone and everyone can update their status, pin a picture or write a blog entry and tell whomever is listening what cancer is like.

I’m of a generation that uses social media – that odd extension of human sociality that promises hyper-connectedness, but most likely only strengthens the connection between users, touch screens and keyboards. I used Facebook during cancer as a way to direct people to this blog, as this blog is more about my cancer, and less about me; it is where Ben with cancer lives.

Other people do it differently

Some people fully merge their e-self with their cancer self, and this is commonly done on Facebook.

Through Facebook I have been able to connect with people my age, who have the same cancer as me, and get what it’s like to be me. It is an invaluable tool for people thousands of kilometres apart to meet and discuss all that cancer is and is not. Part way into my cancer journey, some of these people I’d met started dying and it struck me that Facebook means I can be privy to it all, right up until the last breath.

I’ve witnessed different ways of dying on Facebook

Some people log off early in their final struggle. The posts and photos quietly dry up, just as their motivation, and the relative importance of Facebook to their lives, must.

But some people communicate until very close to the very end. Posts of pain and pain relief, damaged tissues, loss of appetite, people that have let them down and people that have surprised them, what matters most and what matters least – it’s all there for people to see, comment on and Like.

A family member or close friend eventually takes over the account and posts on the cancer patient’s behalf, and your heart sinks because the shift in ownership reflects the larger shift in life force. And then the page becomes about other people and their grief, and then sometimes things get complicated and distorted when loved ones want to close the account and meet resistance from the masses.

I’m confused by Facebook and dying

I'm most confused about how these two forces – one modern, the other ancient – are merging in this age of ours. It’s probably too early to tell anyway.

It is interesting though, especially when support services for young adults with cancer aren't as prevalent as they are for other groups with cancer. And those that are available for us make no mention of what it may be like to watch your friends, and cancer colleagues, die online.