A Pain in the Neck

I’m extremely late to the party on this. Most days, I’ve been working from about 9 am to 9 pm, and by the time I’m done, I can’t look at a computer screen anymore.

But I still think about the weeks-old controversy surrounding the Emma Keller column in The Guardian, in which she asks: “Forget funeral selfies. What are the ethics of tweeting a terminal illness?” It’s a opinion piece about Lisa Boncheck Adams’ Twitter account, in which she tweets about dealing with stage 4 breast cancer.

I didn’t get a chance to read the post before it was taken down, but according to snippets I’ve seen on the Internet, it wasn’t the questions about the morbid curiosity that got people upset — it was Keller’s diagnosing of Adams with a case of TMI. In response to the backlash, Emma Keller’s husband, Bill Keller, also responded with his own column in The New York Times.

The whole thing seems to be fraught with misunderstandings and misinterpretations of other people’s words and intentions. It played out in major convention and social media outlets, but I’m sure people with opinions like the Kellers whisper similar criticisms to friends about cancer patients’ choices on how much they divulge. Since I didn’t read Emma Keller’s piece, I can’t respond much to that, but this got me thinking about cancer blogging.

What I took away from this recent controversy is something that everyone already knows: Everybody deals with cancer differently. And most people have opinions on the way you should deal with it or they way her or she would deal with it. I’m not sure there’s a wrong way to cope. Well, I guess Walter White probably could have handled things better in Breaking Bad. I hope we can all learn from his mistakes and have disassembled our meth labs.

Also, you shouldn’t piss a bunch of people with cancer off. And it’s fine to offer advice, but leave self-righteousness at the door.

At some point, you get tired of absolutely everything to do with cancer, including being told what to do. I almost had a meltdown this weekend after a museum employee told me that my bag was too big to carry through. She did it nicely, but I’d spent the whole time there trying not to get reprimanded, because it seemed like everyone was getting in trouble for something. I almost burst into tears, and when my boyfriend asked me what was wrong, I said, “I’m so tired of people telling me what to do.” (Yeah, I had a rough couple days there.)

Today, I think TMI depends on what you want to know. Twitter is, by nature, full of TMI. Lunch photos. Tweets from companies trying to get you to buy their products. Selfies of so many duck faces. Politicians’ private parts.

My own Twitter is mainly promotions of sites I’ve been working on (check out the article I wrote about fitness/bands/healthy eating/insurance/travel, etc.), followed by cat photos (Facebook is my cats’ main social medium). There are also tweets of inside jokes to two of my former cubicle neighbors, one of whom isn’t on Facebook. And the last category is angry tweets. (The fancy dress I bought on sale is poorly made! This venue is overbooked! Fandango ruined Christmas!)

It doesn’t reflect this blog or even retweet anything from my Pain in the Neck Twitter account. My mom discovered my Twitter feed, linked to a story that I wrote, and she asked me if I was writing about having cancer. So, like a teenager whose diary had been discovered, I just denied everything. She might be reading this right now for all I know.

She doesn’t think I should tell anyone about having cancer. She’s in the cancer-should-be-kept-to-yourself camp. My family wasn’t big on talking about stuff like this. I wouldn’t say it’s a bad thing; it’s just how we are. In fact, I don’t really talk about cancer much in person. That’s why it’s nice to have a blog.

I’m an introvert. Just borderline, if you believe the Briggs-Meyers test; it’s as if I want to be an extrovert, but I can never shake my introvert ways. I stay in one place at a party and wait for people to come to me, often in a nice cocoon of people I already know. Most often, this position is by the snack table or in a comfy chair, but that’s because I love snacking and sitting.

And lately, at parties, sometimes I’ll talk about cancer, but really only if someone asks. Mostly, it’s just a rundown of what’s going to happen. A lot of people think I’m done with treatment, so I feel bad telling them that the worst part is yet to come. I finish up the Brentuximab trial, followed by a hospital stay for at least 26 days, including inpatient and outpatient radiation and a stem cell transplant. Plus there’s possibly an additional month of treatment with augmented ICE.  The blog has been a nice outlet for me to deal with things and keep people updated.

When people find out that I still have several more months of treatment, they seem apologetic. A lot of them say, “Oh, I didn’t know!” That’s because I haven’t really talked about it much. I mostly keep it to the blog. As someone who personally falls somewhere on the spectrum between the Kellers and Adams as far as information-sharing, I keep my cancer news mostly here, in this public forum that feels strangely private.

I find other people’s cancer blogs informative and helpful. I don’t delve too much into them, mostly because I just don’t want to freak myself out. But I know other people’s stories are there, and if I want to read about their experiences, I can. As one blogger wrote in Gawker in a much more timely response to all this, blogging is therapeutic and cancer is nothing to be ashamed about.

If Emma Keller calls into question people’s morbid curiosity, including her own, we’re all guilty. Who hasn’t found themselves reading someone’s blog for that very reason? Every now and then, I click on something friends with children share on Facebook and find myself reading a parenting blog, fascinated at something I know nothing about that sounds truly terrifying. I’ll read about all the ways you might physically or mentally damage offspring by not strapping them in properly or by not watching them every single second of the day and night or teaching them the wrong thing. Just a little bit of scary reading to sate my curiosity.

But I think Adams’ tweets serve to inspire more people than it might upset. I’m glad to see she’s gotten so much support.

It doesn’t seem like the Kellers are saying you shouldn’t be able to blog or tweet, unless I totally misread Bill Keller’s column. And they have a choice as to whether they read it or not. I would like to not have cancer. You can’t always get what you want.