Not "Just Hair": Exposure, Autonomy, and Vulnerability

Hello friends,

In the past couple days it's become clear to me that I've hit a certain (unwelcome) cancer milestone: I'm losing my hair. Right now it's just shedding like crazy. (If I had a contest with my cat--who's losing his hair for summer right now--I would still totally win!) I don't know why, given that it's a primary side effect of this drug (90% of people lose their hair), but I'm somehow still surprised. I think I felt that, having been in in an improbable, tiny percentage on most other things related to this disease I might at least have the chance to be in the special 10% on something positive. Not so!

Perhaps I'm also surprised, though, because my other symptoms haven't been very bad...so much so that (as I wrote about before) I'm in a constant anxiety spiral about whether something physical is a sign or symptom and, if so, whether it means the treatment is working or not. Hair falling out is unquestionably a sign that the chemo is doing something--that it's doing precisely what it's supposed to, in fact, and targeting fast-growing cells of all types. So, yes, in that sense I want to lose my hair. Right when I was first diagnosed I wanted them to hit me with everything all at once: chemo, surgery, radiation - I wanted to be assaulted by every weapon the medical profession had to wield against cancer and I didn't care what I looked like or how I suffered. I wanted to enter treatment as a warrior and I wanted to look like one, shaved head and all.

Somehow, though, I lost that attitude. It's not that I don't want to fight, but that the stance of being a warrior all the time is exhausting. There's a lot that's less than ideal about using the language of conflict and battle (and implicitly of winning and losing) to talk about something that you don't have any control over. If this chemo agent doesn't kill enough cells (as my pessimistic side believes it won't) it won't be because I did or didn't do anything. If it does work, it's only my victory in the sense that it's good luck for me. My body isn't the warrior so much as a field on which battles are waged on a cellular level. And my mind has nothing to do with the success--or not--of these conflicts. Fundamentally, I have no control. And that's the hardest thing for me about losing my hair.

The loss of bodily autonomy involved in having cancer is huge. Not only does it feel like it's something personal, since it's your own cells (sometimes directed by your own DNA) that have betrayed you, but it's also something you can't fix; you can't do anything to change the outcome of your treatment. You can change the treatment itself (different chemo agents, additional drugs, supplementary radiation), but you can't train for it the way you train for a marathon, where your own commitment to training can pretty much guarantee you steady progress and a positive result. You can supplement your own treatment with things (vitamins, injections, crystals, chocolate) that you believe may help. You can train yourself in healthy ways to respond emotionally. (I was already in therapy but everyone involved with cancer treatment should be.) You can go to the gym and keep your body "otherwise healthy"--a phrase that my doctors said to and about me repeatedly during the diagnosis phase and that I never stopped finding funny...being perfectly healthy EXCEPT for Stage 4 cancer is something of a cosmic joke. (I know that they meant that, unlike many of their patients, I could endure the treatments very well and with minimal complications. That IS a good thing. But still...)

You cannot train for cancer treatment. It's a battle, but one you must enter alone, untrained, and unarmed. Fundamentally, you have only yourself. And that must be enough. (I don't mean to dismiss the wonderful community of friends and family here; you all give me the strength to fight this fight. You just can't go with me.) There's an episode of Buffy the Vampire Slayer, a show which I love and which has meant a lot to me at different times in my life, where Buffy must fight her vampire ex-boyfriend Angel (who SPOILERS used to be a good guy because he was cursed with a soul but he lost it because he experienced true happiness with her) who has been systematically finding the best ways to hurt her, psychologically, before killing her. In this final battle, he backs her against a wall, sword pointed at her and says, "So that's everything. No weapons. No friends. No hope. Take all that away and what's left?" to which she replies, while grabbing his sword midair with her bare hands, "Me.":

(Gif source: x)

If you want it, here's a clip on YouTube (this exchange is about a minute in). That moment has been my inspiration from the first moment of diagnosis. I had already used it to get through my divorce when I felt I had lost everything. I hadn't, though, because I was still me, with a core resilience and self-confidence and the righteous strength that enabled me to keep going, to thrive. It is grossly unfair that, less than a year later, I need to draw on that same energy again, but that is how battles work. We survive to fight another day. No weapons. No friends. No hope. Take all that away and what's left? Me.

I know I've just employed the rhetoric of battle immediately after saying it's not ideal. It's not. I'm a peacetime creature, really, as are most of us. But I won't back down from a fight or sidestep necessary conflict either. And being a warrior is not the same as being embroiled in constant battle. Even Achilles put down his shield and wept in Priam's tent. In fact, this blog title is "Pitiless Achilles Wept" for this reason. You can read here about why I called it that, but here's the most important part that I wrote about the scene where Achilles and Priam cry together: 

"They speak the universal language of human beings here: grief. They weep as fathers and sons and lovers because that’s honestly the only constant in our small human lives. So here I am, recording my grief, with the hope that at least, by being together, we can get through the evil I have to endure. I actually thought that the blog title was a quotation–and a beautiful line of poetry–but nowhere can I find a translation that reads, 'Pitiless Achilles wept.' But I still cannot think of a line that feels more appropriate to record the thoughts of someone who has to be both a warrior (brave, fierce, pitiless) and a frightened, vulnerable person."

Tonight I am that frightened and vulnerable person, furious that (without my permission) my body is shedding the hair that I have always loved and scared at how it will change my experience of being in the world. When I got my hair cut two weeks ago it showed no signs of giving up the ghost. My stylist tugged on it and pronounced that "you have really strong hair!" and I allowed myself to think that, somehow, that would protect me. Ah yes, I thought, my hair is strong like all the rest of me; it will endure.

Losing it therefore feels symbolic on a number of levels. I know that it doesn't make me weak, but it does make me vulnerable. How can I be so exposed, without any hair to duck under when I feel anxious? How will I get through the day without being able to run my hands through my hair (a nervous tic that is a self-soothing gesture...and currently hastening my hair loss)? How will I cope with being no longer regarded as immediately aesthetically pleasing (from my privileged position as someone who ticks many of the stereotypical boxes for attractiveness) by people who don't know me? (I did not realize how much I relied on this to navigate the world but it has certainly been made visible to me now. Perhaps this warrants another post later.)

Losing my hair is a good sign. We all want chemo to be as effective as possible so the more fast-growing cells we see being targeted the better. But as it marks me, visibly, as "sick" it robs me of the opportunity to choose whether to tell people or not--yet another loss of autonomy. I do have a wig that looks as much as possible like my regular hair. (I don't love everything about it but unless you have one custom-made you're not likely to find anything that looks precisely like you do.) This should enable me to pass as healthy, barring other obvious symptoms. But I imagine I might be the kind of person who would rather go bald (or at least with a 1930s Norma Desmond head wrap) as a way of owning my illness, taking back some of what it has stolen. I might rather this say, "Yes, this illness is a part of me now--even if it's not pretty. That's what a warrior looks like." No weapons. No friends. No...hair. Take all that away and what's left?

I’m [Not] Fine: Distress Tolerance as a Double-Edged Sword

So, friends, it’s been a while. And if you’re wondering if I still have cancer…I do. I feel somewhat silly writing updates when, practically speaking, there’s nothing much for me to update you on. I also feel worried that I may “bore” you by continuing to have–and continuing to talk about–this same disease over and over. Cancer is just a fact of my life now, both terrifying and quotidian (and terrifying because quotidian). And, I guess, my cancer is also a fact of yours. And so I worry that you’ll lose interest or become habituated to it or maybe even just forget that it’s a Big Deal–to me, to you, to the world–and that I exist every day in quite a scary position. Or that–particularly since I’ve been keeping up do assiduously with my normal life (about which more in a moment)–you’ll wonder why I’ve chosen to confront you with my illness yet again. At a certain point doesn’t continuing to talk about it become…rude?

I’ve now had five weeks of in treatment during only four of which I’ve received chemo. (You get “off” weeks so that there’s some built-in recovery time so that, for example, I’ll get chemo again on Thursday and then I’ll get a week off next week.) Five weeks and, to my great surprise, I’m still not looking or behaving much like a cancer patient.

Or am I?! What IS a cancer patient supposed to look or behave like anyway?!

This question relates to the post I wrote earlier about the invisible illness and how I have (still) the privilege of not looking like I have stage 4 cancer - a disease that is extensive and serious and which is maybe still growing even as I type this. I wrote before about how the invisibility of my illness so far is a largely positive thing that allows me to “pass” as a regular person. I’m experiencing a bit more of the other side of that now, though, which is that as my treatment progresses with relatively mild symptoms and without hallmarks of illness (I STILL have so much hair that I actually had to get it CUT last week!) the severity of my disease becomes, I think, less real to the people around me. It’s still quite real to me. Not only do I literally never forget about it, but it’s my physical body that’s experiencing symptoms, which are accurately characterized as “mild” but which are absolutely, definitely unpleasant. For the record, I have more or less constant acid reflux, which I manage with over-the-counter medicine; low-grade nausea that I have drugs for; occasional diarrhea that also just takes over-the-counter stuff; neuropathy–nerve death–manifesting as pins-and-needles in my fingers and toes; joint/muscle pain in my shoulder withs some spasms; and bleeding and bruising easily which has led to some bloody noses when it’s dry. (Far worse, I will add, are the psychological effects of wondering constantly whether chemo is working; if it is working how well; if it isn’t working how much the cancer has spread; whether I will recover at all and, if so, for how long; and all the myriad other questions that can send me deep into an anxiety spiral.)

So I guess that’s…not nothing. And yet I barely ever mention it. In part, it’s because I’m aware how of how incredibly lucky I am to have such relatively minor symptoms. I know it’s worse for most people, that chemo renders many people miserably sick and basically non-functional. I also don’t bring them up because I hate mentioning things to people when they can’t do anything about them, projecting, I suppose, my own dislike of feeling powerless to help those I care about. (I show love by trying to problem-solve, which is neither the best nor the worst approach.) Add to these reasons the fact that I’m very afraid of being perceived as “whining” or “complaining” (even when there is a very valid thing to complain about) AND of being perceived as “weak” if I can’t hack something this relatively mild and you can see why I choose simply not to discuss it.

But I think my decision not to talk very much about my symptoms has to do also with an ability I have that has betrayed me before and kept me from getting the support–emotional or practical–that I have needed in the past. That ability is my skill with distress tolerance. “Distress tolerance” is a term from DBT (Dialectical Behavioral Therapy) although I find it more broadly useful as a concept. Essentially, it is what it sounds like: the ability to withstand emotional or physical discomfort. It’s a quality that I have cultivated relentlessly over the years, both because I needed it to cope with the situations in which I found myself and because it was highly valued by others. It is a positive thing, in one way, since it affords the ability to make it through incredibly difficult situations intact. It can be a negative one too, though, particularly since “distress tolerance” can look to the untrained observer a lot like being unaffected, unruffled, “fine.” It functions far too effectively as camouflage.

One of my best friends, who was my housemate during my Oxford Master’s, said back then that you could always tell when certain people were on the edge of collapse because, when asked how they were, they would just say “I’m fine.” These weren’t just any people, though. They were people like us. Some people probably mean it quite sincerely when they say that they’re fine–they may even want you to stop asking if they say so! Those people would probably also tell you if something were wrong, might not think of themselves as being weak or disappointing in some way because of the simple fact of needing something from another person. I’m not one of those people, though, and neither was she. We’re the kind of people, instead, who will smile while bleeding internally, laugh through gritted teeth, keep up a good appearance no matter what. We’ll also trick you and distract you like professional confidence artists, weaving together strands of questions and compliments about your life until you’re unaccountably talking at great length. You may have asked about us, but after we say the magic word (“fine”) you’ll find that we are talking about you and only you. 

Very few people spot this trick, which is understandable since people, in general, love talking about themselves. This makes it also a very clever emotional trap for friends, family, and partners: if you don’t see through me, if you let me go through my song and dance, I feel like you don’t really see me at all and I can therefore justifiably push you away. The rare people who do see through this fiendishly clever trick are usually the ones who know how to do it themselves. They’re kindred spirits with whom the trickster process stalls, forcing me to have a real conversation about how I am past “fine.” I’m lucky that I now have a lot of these people in my life, partly because when I find them I cling on for dear life, partly because I’ve worked hard on breaking this pattern to be able to have more of these real conversations. After all, is there anything more valuable than finding another person who you feel truly sees you?

So when I am tolerating my distress–whether it’s physical or emotional–I can at least be sure that there are some people in my life who will see me, and see through me. But they’re mostly not living where I live, which adds another layer of complexity. How will they see through me when they’re relying entirely on my own reports? The answer, of course, is that I have had to get better at being honest: at honestly assessing how I am and honestly telling people if it’s not “fine.” And it’s absolutely one of the hardest things I’ve had to do. But it will, I think, mean that I emerge from this experience with even better friendships and, perhaps, better coping mechanisms. Distress tolerance is all well and good, to an extent, but it shouldn’t be the main principle along which I organize my life. 

So that’s how I am, really. Both fine and not fine. Living my everyday life as well as I can, ignoring the symptoms I can’t eradicate, taking things a step at a time and hoping for all the best. But also consumed with grief and rage and fear, all of which sit untapped but just below the surface, easier to access even than the veins into which my port is plumbed. My reluctance to tap those feelings is because, more than acid reflux or shoulder spasms, they would make my life unlivable if I experienced them all the time. But perhaps it’s enough to share that they are there, even if you can’t see them, and that they are part of what makes me different from how I used to be–even if I still look the same. (Pictured: new haircut.)