making sense of writing books and agreeing to be studied

I’ve got into the homestretch of my masters thesis research, studying Twitter use among people living with advanced, metastatic, chronic, terminal, or incurable cancer. There are still some analyses left to do, but I’ve started to write (and write, and write, and write some more) as a way to begin making sense of it all. I suppose this blog post fits within this sense-making activity too.

I loved speaking to and getting to know a small piece of those people who were gracious enough to let me interview them for this study. As the drudgery of going through data again and again and again starts to wear me down,  I find myself thinking back on some of those interviewees, mentally re-listening to the words they said and the emotions that came through as they spoke. I have a particularly soft spot for their laughter, and it gives me a wistful feeling thinking about deleting those audio files when this project’s finished.

I also find myself wondering what they’re up to now. It’s been a year or two since I spoke to most of them, so I can’t help but be curious about what’s changed in their lives since. In many cases I didn’t know their Twitter handle, but there were a few I ended up remembering for one reason or another. And so a few weeks ago I found myself looking up one of those people: Robin*.

When I spoke to Robin, they were in the midst of writing a book. This is not an uncommon thing for people living with cancer to want to do, as I quickly learned when I started working at Princess Margaret in 2010. Within weeks of starting the job I was introduced to several patients who had been writing and self-publishing their own memoirs, and have heard of many more doing the same since. For Robin, writing a book was something they’d always been interested in doing and since getting their terminal cancer diagnosis, it was a bucket-list item they decided to work on.

Anyway, so a few weeks ago I found myself wondering if Robin ever finished the book. I looked them up on Twitter to see what’d been happening since we spoke, and… well, Robin had died a few months after the interview. Logically-speaking, I recognize that this was a very real possibility. When we spoke, Robin told me they had already lived 4 times longer than the doctors expected when they were first diagnosed. Medically-speaking, Robin was not going to outlive this cancer diagnosis. Robin knew this, Robin’s doctors knew this, I knew this. And yet emotionally-speaking, I was not prepared to see this happen.

One of my first thoughts was that I’d hoped Robin was able to finish writing their book before they died, but I quickly realized maybe I was looking at things all wrong. I don’t believe Robin’s point was to ever “finish” the book, but rather it would forever be something that Robin worked on for as long as they could. The book would only be “finished” when Robin died (it’s worth saying here that I do not know if that’s how Robin felt, this is me sorting out thoughts).

But interesting still that the goal would be a book rather than a blog – something Robin also did, along with using other social media to talk about their disease. I don’t know if the book was ever (or ever will be) published, but having that goal in mind – to produce a tangible object that could last for decades, that has a sense of permanence – makes me wonder: Was the point to leave something behind, to leave (at least a piece) of Robin’s life story behind so they could leave a lasting mark?

Was that also the point of writing publicly on Twitter?

Was that also the point of participating in my interview? To leave a mark on me and anyone else who would read my research?

I’ll never be able to know.

 

 

* not their real name

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