What's real?
The few weeks since my diagnosis have felt like the longest, roughest year. Maybe that's a good thing-- maybe time slowing down is just what I want. It's not just the word "terminal" and all that implies; it's hard to describe how every single aspect of life has been hurled upside down. There isn't any part of me or my life that feels real right now. I used to think of my body mostly as a capacity (thank you, Iris Marion Young), but now it's really just about degrees of pain. Anything to do with thinking is bent at an angle, because thinking requires something about space-time that has slipped through my fingers. Relationships are either completely colored by the new reality or wavering in a holding pattern of necessary secrecy. And then, of course, there are numbers.
I just read Paul Kalanithi's memoir When Breath Becomes Air. You've probably heard or read about it-- he's the brilliant neurosurgeon who was struck down by lung cancer at 36, and somehow found the energy to contemplate his life and death, write a book about it, and father a daughter in the 2 years between his diagnosis and death. Like all of us, he wants to know when. It is impossible to imagine if you haven't been there yourself, but the conceptual difference between a year more of life and two and five is as vast as the distance between the stars. But Kalanithi believes that the numbers can't answer the actual questions: "What patients seek is not scientific knowledge that doctors hide but existential authenticity each person must find on her own. Getting too deeply into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probablility."
Existential authenticity feels like a lot to ask. The one place I feel real right now is on chat boards for other women with terminal breast cancer. It's the only space I feel I can actually exist in in some way, the only space that makes any sense. It's where all the inhabitants understand the immense structures of medical intervention, where you can ask about mets and be understood, where the seemingly infinite varieties of chemo can be untangled, where everyone understands how incredible it would be to be able to imagine living five years. Outside of that space, I'm an alien. I'm the one who has heard the worst thing you can hear, the thing you fear the most, the thing you whisper about. And to make that make sense, I must also be the one who did it. Apparently, this is a long-standing, well-documented reaction to cancer itself: we understand it as a punishment from within. Victims don't just blame ourselves-- and we all do, it seems, not just me-- but others blame us too. There has to be a reason why.
If you've read previous posts you know this is something I'm struggling with, a lot. My decision to stop taking tamoxifen may have contributed to this recurrence; but then again, I've read dozens of stories now of women who progressed to Stage IV while still on it. Maybe it would have postponed all this, but also, as my oncologist hypothesized, led to my divorce. Maybe it would have had no effect at all, and maybe the escaped cells had already escaped and were setting up shop by the time I had my mastectomy. Maybe I could have made a difference and spared my family this pain. The maybes feel like what's tethering me to the unreal. Because in the real, none of it matters. I made the wrong choice, but for the right reasons, and with the most hope. Somehow I have to forgive myself for being wrong. I didn't understand the stakes, I didn't play the right cards, and that is going to cost me my life. But I know that if I can't forgive myself for being human and hopeful and stupid, I might lose the chance to actually do something with this time that's left.
Kalanithi writes that most patients ask the same question when given a terminal diagnosis: why me? But when it's his turn, he knows the answer: why not me?
