2020 Can Take My Hair, but Not My Hope

My hair started falling out on election night. 

I thought at first it might be the anxiety, that I was literally pulling my hair out with worry over numbers I already knew were not going to be definitive before the night wore into morning but which I stayed up until 3:30am watching anyway. I tweeted rapidly, reassuring my jittery timeline that not only had we all known that the night would bring no results but that we had even expected Trump to lead in key states because of the greater number of mail-in ballots from urban areas that would largely count for Biden. We knew. We all knew. But we were all terrified, flashing back to 2016 and already dreading another four years of living life on high alert, in constant survival mode.

I posted a selfie with a tweet that read, "Could be the last presidential election I vote in (blah blah stage 4 cancer blah blah) and I wish it were better and clearer than this but it's a crucial privilege to have voted. Remember, whatever the outcome, the last thing they can take from you is your hope."

To me that last sentence has been a mantra for these years and for my treatment. I have consistently refused, despite overwhelmingly terrible odds, to lose hope. The story of Pandora's Box tells us that the very last thing left inside was Hope--that even once all the demons were out in the world there was that tiny, feathered creature left to hang on to. It hasn't been easy, but I am one of the most stubborn people you will ever meet (and if you doubt this just ask anyone who's ever fought me on anything!) and it has turned out to be a saving grace rather than an irritating personality trait. Feeling like the world was trying to take my hope away made me angry. And when I get angry I will fight back. 

I know I'm not alone in feeling like we entered some kind of alternate nightmare timeline on election night 2016. To that point, despite periods of immense personal difficulty, nothing truly terrible had happened to me. Then, in short order, my marriage ended and I was diagnosed with and began being treated for a terminal illness, all against the backdrop of a regime so deliberately hateful that it was truly incomprehensible to me. Then, a global pandemic and national crisis swept away the small consolations I'd found in my new life with cancer. The temptation to feel hopeless was strong and I struggled with it, particularly in the isolation of quarantine. I'm struggling with it now, facing a winter of further lockdowns, social isolation, continued chemo, and the added indignity (and chilliness!) of not having any hair. But somehow the coincidence of my hair loss with election night seemed like a good omen for the future, if a sad thing for the present.

I heard the news that they had called Pennsylvania for Biden at a peaceful Airbnb in the Catskills after stepping out of a shower where lost hair in handfuls. It felt oddly like a sacrifice I had made personally. I joked about this with friends on the text chains that lit up and that (despite my promise to myself and my writing partner that we'd "go off the grid") I responded to immediately. Instant replies, with emojis and GIFs, participated in the fiction: "Thank you for your service!!!"; "We ALL appreciate your sacrifice!"; "Who among us would NOT give up their hair for no more Trump?". The feeling was real for me, though. It was as though the good news demanded some kind of karmic offering. You never get something for nothing, I thought, and really it was a small price to pay.

The rest of the weekend passed too quickly, with absorption in the novel I plan (madly, given that I also work full-time) to work on for "National Novel Writing Month" (NaNoWriMo), walks in the unseasonably warm woods, and nighttime drinks on the back deck under the stars, watching my hair blow off in fine strands and drift through the sodium porch light. My friend and I read tarot and both our layouts contained The Tower, the card for new beginnings from total annihilation, the moment of destruction in which (as the novel's title says) everything is illuminated. "This might sound dumb," he said, "but maybe yours is about your hair." It did not sound dumb.

There is probably no more iconic visual shorthand for cancer than hair loss. It happens because chemo agents target fast-proliferating cells, which tend to inhabit things that grow rapidly by nature (hair, fingernails), or that we need to replenish often (cells in the gut), as well as out-of-control cancer cells. But not all cancer treatments, not even all chemotherapies, cause hair loss. In my 20 months of being treated for cancer and my three previous treatments (four, if you count the surgery I had) nothing had yet affected my hair beyond a bit of thinning. This despite the fact that my first-ever treatment (Taxol) was widely known to cause hair loss for "everyone." I had been fortunate with this particular side effect in a narrow way that I have absolutely not been on a broader scale. "Maybe," I had let myself think, "I can have this one thing." The odds were in my favor too; only 38% of people in clinical trials being treated with Saci lost their hair. I liked the odds of being in the 62% who didn't. But--as we all felt deep in our gut while they counted votes in battleground states--odds aren't everything.

I had come to treat the "strength" of my hair as a kind of relative consolation (though as with everything cancer "strength," "weakness," and the rhetoric of battle have nothing to do with outcomes). I treasured still having it, not just out of vanity (though I have always loved my hair whatever length, style, or color it has been) but because it allowed me to pass among regular people as one of them. I had no visible markers of the illness that is killing me, concealed as first the tumor and then the scars were by my clothing. "You look wonderful," people would tell me, even when I suffered from stress fractures from nothing more than running or sneezing; muscle spasms in my shoulder and nerve death in my fingertips; nausea that I swallowed with swigs from my water bottle that just made me look all the more like a hydration-conscious athlete; and profound, constant, and debilitating fatigue. Invisible illness had its own perils but I would take them--take all of them at once if necessary!--if only I could keep my hair and look normal.

It was not to be. A part of me had known this, since a lifetime with metastatic cancer means a lifetime of treatments a solid proportion of which result in hair loss. But I had hoped. And I had liked the odds. 

The hardest thing for me is having to give up this particular consolation before knowing whether or not my new treatment is also working on my cancer. Unfortunately, there really isn't a correlation between side effects like hair loss and effectiveness of treatment. If it is working then I will feel that--like the election to which I felt I had karmically contributed--it was all completely worth it. Yet, even in this best case scenario, there's a new reality for me which is that while I am on this treatment I will stay bald. When you are a chronic patient you hope for a treatment that will work well with manageable side effects. And if this treatment works--and if the other side effects are as ok-ish as they are now--then I will remain on it. 

It's that future that I am furious about more than anything else. I want to continue to live my life, of course, but I don't want to have to do it bald! In part that is because I don't want to register to people constantly as an archetypal "cancer patient" when I know that I am so much more. It is also in part because I don't want to think of myself as being ill, and living every day having to disguise my absent hair will make that all the tougher. I have already noticed that I feel, physically, as though I am sicker because of my constantly shedding hair. How could I not, in some ways, when every move I make and every glance at myself (including in endless Zoom windows) shows me this highly visible change? 

For that reason, I'm shaving my remaining hair tomorrow (Wednesday). It's a way to feel less disempowered--less like hair loss is happening to me--and wrest control of the situation back. I will try to find agreeable things about it: wigs, scarves, cozy caps, bright lipstick, statement earrings, and a general punk/Mad Max vibe that is appropriate to 2020. But I don't want anyone to think for a second that I find this agreeable, or even acceptable, or that I don't mind. I mind a whole hell of a lot. My hair was my consolation prize, my camouflage, my vanity, my folly, and my battle cry. 

I dyed it purple when I was first diagnosed because I knew (or thought I knew) that I would be losing it soon. I didn't, and I came to cherish it as a symbol of my boldness in the face of circumstances trying to oppress me, to make me shrink, to tempt me to become invisible. I refused and used it to "shout" all the louder in response. Because of what it came to mean to me, I'm nearly as sad about losing the purple as I am about losing the hair itself. It both symbolized the weight I was carrying and also that I would not let that weight grind me down. It was my act of resistance and my sign resilience all at once.

I sent a text to my friends, explaining this and offering, as an idea, that I could "pass the purple" to them in some way, small or large. It would feel more like handing off a torch or a weight (or the One Ring) than anyone shaving their head in solidarity. (After all, if they did that it would just remind me as I watched theirs grow back that, in fact, our positions were very different.) You're welcome to do it if you'd like too, internet friends, with temporary or permanent dye or a wig or a headband or one of those terrible 90s hairwraps or whatever. But I don't require that anyone do it because I feel support from you all in myriad ways, all the time. (But if you do, please send me pictures!)

It's November 2020. The election is over and Joe Biden has won. I still have cancer and I'll be bald tomorrow. I hope it's a turning point, both personal and global, because it feels like one. We've given up a lot in the last four years and I cannot say that I feel in any way peaceful or accepting about having to give up yet one more thing. But in losing my hair I absolutely refuse to also give up my hope.

(On our walk we did also seem to find a version of The Tower, all that was left of an abandoned house)