Thoughts on Lisa Adams & the Media Flurry

So by now, you have probably heard about this whole Lisa Adams debate. Basically, two married journalists, Emma Keller and her hubby Bill Keller- wrote about Lisa’s awe-inspiring twitter presence (and related blog) with regard to her stage IV breast cancer. Both journalists were critical of Lisa, calling her writing about her cancer and about dying “TMI,” being generally totally tone-deaf, and in my opinion, absolutely missing the point of social media and why someone with a life-threatening illness, indeed, someone with a terminal diagnosis, might put herself and her experience out there for others to witness. I won’t rehearse these amazing critiques, responses, and thoughts on Lisa and her writing, but here are a few great pieces about what has gone down.

The initial articles shame this woman who has boldly, humbly shared her experience of dying. As if her metastatic breast cancer was a dirty, dirty secret she should hide. As if she did something to cause her breast cancer. As if she’s incapable of making her own decisions about what to share in public digital spaces. As if she were a child to be reprimanded for sharing her hurt. As if rupturing the picture-perfect personas that populate digital publics but that don’t really reflect life is a horrendous transgression. As if we were not all responsible for the cancer invading her body, precisely because we’ve not yet launched a massive revolution contra the insanely toxic capitalist invasion of our bodies, our earth, our world.

I was floored to discover Emma Keller, the initial writer, herself had breast cancer. How on earth…. I thought, and then, suddenly, it all made sense. She’s probably deathly afraid of a recurrence. Simply terrified. And there is Lisa Adams, blogging and tweeting away, the embodiment of exactly what she hopes to never be. She probably wants to run in the other direction, forget it ever happened, refuse the possibility. It would have been better if she just turned off her twitter feed.

The thing is, we live in comfortable la-la-land about breast cancer. Everything is happy-happy pink, people call themselves “survivors” (I just can’t get on board at the moment- it seems to imply that other people had to die so the “survivor” could survive those other, dead people. Can’t do it.), and we have celebratory walk-run-things in which we gather girlfriends, wave pom-poms, and adorn ourselves in clothing, makeup, and all kinds of decorations that come from the companies that produce the very toxins linked to breast cancer. It’s a la-la-land.

No one wants to know about the deaths, no one wants to hear about the treatments not working, no one wants to stare down the statistics and imagine themselves on the wrong side, no one wants to sit and listen to what it’s actually like, pom-poms and survivors aside. Lisa Adam’s tweeting ruptures the la-la-land. It’s public. It’s not pink. There’s no pom-poms, because, in fact, she’s dying. It’s not exactly something you can cheer on, there’s no “surviving.”

You might not hear these stories. I hear them everyday from other young women with breast cancer, from women with breast cancer in all different stages. I hear about, and feel the constant pressure to smile and say its “getting better” and that we’re “making it through.” I hear about, and sense, feeling alone in the midst of a crowded room, even when there are people bringing food and texting hearts and offering to be appointment assistants. I hear about and tango with the fear, the sadness, the horror that is not pictured anywhere, not reflected at all, except in the eyes of the other young women I know, who speak the language of chemo and hormone status and nausea.

Maybe the first writer, Emma, and her husband desperately need to convince themselves that what is happening to Lisa won’t happen to Emma.

The other day, I met a young woman with metastatic breast cancer. She’s the first person I’ve met who has metastatic breast cancer. We both attended a yoga class for young adults with cancer. She’s just like me. We were born the same year. She has a job and a fiance and dreams. And metastatic breast cancer.

I’m certain my eyes were wide. Inside, I gasped. My stomach churned. I desperately wanted to believe it wasn’t true, couldn’t be, impossible. I hoped it was a garish, ugly cancer joke. I would have done anything to make it not real, this young woman, standing in front of me, chatting about hormone status and chemo hats and oh- metastatic breast cancer. Anything. But there she was, with me, on the same road as me, attending the same yoga class as me. Nothing is permanent. Not her, not me, not the yoga class we attended. And so we sat and talked in that comfortable room with the high ceilings and drank tea, and there was nowhere to go.

I think Lisa Adam’s social media presence and the flurry around it should be a wake-up call. I think it should jar us out of the la-la land. I think it should make us think what might happen if we took her seriously, if we stared the stats in the face, if we got really up close and personal with death.

I’m afraid, though, that like so often on social media, the flurry will pass, and we will move on because we liked, shared, commented, participated. And Lisa Adams will still have metastatic breast cancer, and chemotherapy still won’t work very well for lots of people, and I will keep meeting young women with cancer, and some of them will have metastatic breast cancer. I don’t want it to pass. I want the flurry to come with us into the future. I want the flurry to grow. I want the flurry to be angry. I want the flurry to scream and shout and writhe and be black and ugly and angry. I don’t want it to be just a flurry of feeling. I want it to be a storm that doesn’t end until we actually deal with breast cancer. And all the other cancers. Then the flurry can die down, when there is no more cancer.

learning to do cancer from fb

So by now, you’ve probably seen this whole pre-mastectomy dance party video and the equally awesome responses by this woman’s friends/family/colleagues who made videos dancing themselves for her recovery. It’s kind of everywhere on Facebook. It’s kind of awesome.

I kind of don’t know what to think. On the one hand, OMG, this is SO COOL and HOW do I get my medical team to be such rock-stars like she did?!?!? And also, would MY friends make silly videos like that, too? I mean not would they exactly do what these folks did, but if I asked them to do something, would they? Am I even cool enough to think of something that amazing? Am I cool enough to party out with breast cancer instead of freaking out?

And what does it mean that this is getting passed around? She- and everyone who participated- are incredible, playful, creative, brave. But those of us posting this to our FB feed and emailing it and participating in its viral life… why? Are we so obsessed with hearing happy stories of awesome about cancer and women with cancer that we need to frantically share this so everyone knows, this is how to be with cancer? That actually, if you just try hard enough, you can think of something awesome and do it, and everyone else will follow suit, and it will be awesome and obviously, you will beat cancer? I mean, I love this so much. And I love that she did this. I just think the hyper-circulation and viral life of this pre-mastectomy video is a little unnerving. I think it’s so unnerving because the quantity of times it has shown itself on my Facebook feed seems to scream right at me, THIS IS HOW TO DO CANCER.

I’m trying to figure out how to do cancer. This woman-doctor shows us one way, a way that everyone will clap for and love and share and make viral. I know particular kinds of stories are intelligible, and others are not. Oh gawd, I’m about to go all Ranciere and the distribution of the sensible on breast cancer. I’ll spare you. But really, why this story? Why this white doctor woman with great dance moves and a big pre- mastectomy smile? She’s great. But why’d we pick her to make viral? To be the example, to spread hope, to be non-threatening and totally lovable, to beat something by dancing?

On the other hand, there’s another how to do cancer text widely passed around on FB right now. This one is much sadder. A young woman with a beer sits on a porch with her lover. They drink. And then, it seems, she gets diagnosed with breast cancer. What follows are a series of images he took of her, resting, shaving her head, pushing the morphine button, visiting with friends. And then she is gone. Her bed empty, and the rain falling on the windshield of the car. This one is heart wrenching. I know, too, this one is shared because I don’t want to be her. No one does. No one wants me to be her, either.

I still don’t know the stage of my cancer. I’m clinging instead, to the fact that its estrogen +, which means it can be treated for a long time by blocking estrogen production. But the really sobering thing, is that though I can cling to the idea of that estrogen drug, I could actually be the second woman. The woman who’s husband chronicled her illness, and her eventual death. We could all be that woman.

This one doesn’t speak to me like the mastectomy dance. The mastectomy dance shows me how to be. This one warns me of what I could be. It is a deep, dark warning. It is the warning that assures the other 5,999 people in my age group that I’ve taken the bullet for all 6,000 of us, and so they can look. They can look in horror, and then look away, look towards the dancing video. Because that is what we want, even though we never know if that is what we have.

And then of course, there’s the formidable dissertation supervisor who, a researcher working at the intersection of queer/cancer/mobility/media never fails to post something that’s neither of these narratives. It’s an interview with Lochlann Jain, who was diagnosed with cancer at 36. She writes now, researches about cancer. She discusses the confounds, the complexities, the paradoxes, the slippages. Sure, Lochlann Jain is an academic. She speaks a language that sounds good to me. It sounds familiar. It feels thoughtful and right. She even talks about feeling like people think she is aggressive for not covering her bald head. It’s a medium I understand, thoughtful, critical words woven into a larger argument that speaks both to me, as another young woman diagnosed with breast cancer, and also, it’s both personal and theoretical and critical. I want to learn how to do cancer like her, not like the other two. But it’s not viral. Too bad for that!