You Have to Catch All of Them

This piece is from the book I’m still sort of writing. 

The first Nintendo game I remember playing was Pokemon Gold, which I played on my turquoise Gameboy Color at some point in the 90s when such things were played.

This was hard-won, by the way—my parents didn’t really understand the appeal of Gameboys and tended to consider them a thing for boys, anyway. They thought I should be spending my time reading and practicing my various hobbies. Which, to be clear, I definitely also did with much gusto! It’s just that in addition to that I wished to catch Pokemon.

(I might’ve had an easier time, or maybe a harder time, convincing my parents to buy me a Gameboy if I had known at the time that my mom once allegedly forgot to pick up her own son from daycare and to come home in time for her own anniversary party because she got distracted playing Tetris on her work computer back in the Soviet Union.)

Anyway, I don’t remember exactly how, but I succeeded in obtaining the turquoise Gameboy Color and the Pokemon Gold game for it from my parents. Back then, it was still possible to play a Nintendo game without immediately finding out all of its fun little secrets on the internet. You could find game walkthroughs if you knew how to search for them, but I probably didn’t. The other way to know things about games was to talk to other kids who played them, but as a freaky little neurodivergent kid growing up in suburban Ohio at a time when nerdy shit wasn’t “cool” yet or whatever, I didn’t exactly have a lot of friends, and the ones I did have did not play Pokemon. The kids who played Pokemon at my school were largely the sorts of boys who still thought that pulling girls’ hair was like, a normal and chill thing to do.

In short, just, no.

All of that is to say that I played Pokemon Gold without knowing much more about the game than I could glean from the little manual that came with the game cartridge. That means that when I got to the end of the game, beat the Elite Four, and watched the credits roll, I had no idea that after the credits, I would discover that I had literally only played half of the game and that now I got to hop on a train and go to the region from the original set of Pokemon games and explore that region and catch all of those Pokemon! My little mind was blown by this! I had just completed this amazing game, and now I had as much more game to play!

This experience might only be relatable to a very small and specific subset of the people who may be reading this, but hopefully I’ve described it vividly enough that you can sort of imagine it.

And now maybe you can imagine the polar opposite of this experience. So, instead of finishing an awesome thing and then finding out that you actually get double the awesome, you’ve just finished a horrible thing and now you’re finding out that you’re going to get double the horrible.

For example, you’ve just finished cancer treatment, and you totally thought that that was the end of the Cancer Game, except now your mom has cancer also, and now you get to experience a whole new side of the Cancer Game that you never even knew existed! It’s a lot like the first half except there are new and unfamiliar monsters here!

You might even start to wonder what happens after you finish this second shitty half of the game, and the credits roll again. Is there going to be another surprise? Is there any point to continuing to try to play and win? Does the game ever actually end?

Anyway, shittiest fucking game ever. Zero out of five stars.

You Have to Catch All of Them
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2 AM Talks Podcast: Baldness and Queer Aesthetics

As you may recall from my little life update a month ago, I’ve recently started a new podcast called 2 AM Talks. My first guest was Alex Gabriel, my colleague here at the Orbit who blogs at Godlessness in Theory. We talked about our experiences with hair loss, queer identities, and so much more.

You can listen to the episode here, or subscribe wherever you get your podcasts.

The first half of the transcription is over on Alex’s blog, along with some awesome selfies from us. Read that first, then return to this post to read the second half.


Alex: I’m interested in, as far as makeup—you have hair again now, right?

Miri: Yeah! It’s short, but it’s growing back.

A: Yeah. So I don’t know what this looked like when you did not have hair, but for me, one of the things that I love is when I’m—I don’t normally wear everyday cosmetic makeup from the makeup counter at the pharmacy. The makeup that I wear is generally full on professional theatrical stuff. But when I’m doing all of that, I really like whatever base layer you’re doing, my foundation keeps carrying on up my forehead and then all over my head. And then when the contour arrives, I contour my skull! Which I feel is particularly hardcore on some level or other.

I’m not sure—if I said the name Sasha Velour, is that a person you recognise?

M: No.

A: Okay, so: drag queen from New York. Won Drag Race a couple of years ago, and is probably the only person associated with that show who I’m just reallyinto, to the point that I don’t care about anybody else. But yeah—New York drag queen, travels around the world a lot, and is rather intellectual and the child of two college professors. Known for being bald, and doing that in the full made-up femmeness as well.

I’m interested in your bald role models, but that’s definitely one of mine, and a big part of that process of finding a queer version of baldness. One of the things she’s talked about in interviews, actually, is that around the time that Sasha started doing drag, her mum died of cancer. And part of the reason she’s a bald queen is because they had conversations about, what was that process going to be? And [she] encouraged her mum to just embrace the glamorous aspects of baldness, and therefore now is permanently a bald queen in homage to that, and as a celebration of that.

Interesting that there’s a person who embodies both of those experiences of baldness that we have (both cancer and male-pattern). But yeah, that’s one of the people, as well as various film characters and things, that I’ve got as a personal canon of feminine baldness that I like to dig into a lot.

M: Yeah. So bringing it back to that topic, of course the first thing that comes to mind right now is Black Panther.

I’m hoping that everyone who’s listening has watched Black Panther—and if not, pause this podcast and go do that immediately, because it needs to be done! But in the movie, the Dora Milaje—the women who protect the Black Panther and project Wakanda—they’re bald, and they are absolute consummate badasses.

And there is a butchiness about that, in that they’re warriors and probably all queer as fuck (and if not, then I disagree with that!)—but there is a femininity to them. They show vulnerability, and they dress up at points in the movie; at least Okoye does. And that is actually when I love her look the most: when she’s undercover. I don’t remember right now the gown that she wore, but it was a fancy evening dress—and she wore a wig, to fit in I guess, but at one point she takes it off and she’s so happy to be rid of it. And OH that was so good! That gives me all of, like, the queer feels. Yes!

A: So—can I jump in here?

M: Yes!

A: Here’s the thing—I had a lot of drag-and-other feels about that scene. The moment when she says, ‘Look at me, do I have to keep wearing this ridiculous thing?’ is when she first turns up wearing the wig. She takes it off as a combat move and throws it at somebody.

M: Right! That makes it even better.

A: Yeah! But also, as far the gown, the actual costumes the Dora Milaje wear are based on—I think it’s an amalgam of various pan-African influences, but particularly… I can’t bring the name of the ethnic group to mind, but one particular African element. And I really appreciated that when they go to the casino, her dress that she wears is the same colour, it’s bright red, and it’s kind of a translation of what she would normally wear into that context. And I’m really interested in the idea [that] she’s theoretically going from quite butch to quite femme, but as a costume choice and an aesthetic choice, that almost seems to pose the question, exactly where is the switch there? And invites one the think a bit more questioningly about how those roles and aesthetics are constructed. So I was really into that. And also, just her on top of a car, bearing down on somebody, with a spear in hand! …was fabulous.

M: What I appreciated most of all, I think, about the aesthetic aspects of that scene is that while the wig was both practically and symbolically just unneeded there, she seemed as comfortable and at ease in a dress, really, as she does in her normal uniform. And I like that on a number of levels, because first of all, again, it jumps the butch-femme barrier. Just because you normally dress butch doesn’t mean that you can’t fucking rock a femme outfit. But also, it reflected the fact that warriors can come in many forms. You don’t have to look traditionally masculine to do it.

I don’t know enough about the Wakanda mythology to know why they’re bald. Maybe you know that? It might be to do with aesthetics, it might be to do with practicality. But regardless, you can still kind of do both. And in fact, I wouldn’t even call it ‘doing both’. I would call it ‘being her’. Sometimes she wears a fucking warrior uniform and carries a spear, and sometimes she wears an evening gown and carries a spear. (And rides on top of a car. And throws it.)

A: Yeah!

It was on the tip of my tongue, but it’s come back: it is the Maasai, I believe, who are the Africans that that particular—the whole Wakandan aesthetic is drawing from everywhere, but the Dora Milaje in particular are Maasai-looking.

And I guess to take that whole discussion maybe a stage further: potentially, one thing to think about in that context is binaries of masculine and feminine as a European thing. And if you’re not only African, but from—in this context—the African country that was never colonised, of course she does not observe that binary.

M: Yeah. I’m obviously not knowledgeable enough in African history to be able to say for sure, but that, based on what I know, sounds pretty true to me: that white westerners very much imported some of that into Africa, and into many parts of the world.

I mean, just think of the fact that there are many parts of the world where men or masculine wear items of clothing that westerners would call skirts or dresses. And to my knowledge, the only white western exception to that is the kilt. But in many other places, it’s not necessarily the case that just because you’re a man (or masculine), you have garments that wrap around each of your legs. You know?

A: Sure!

I’m only able to discuss all of that about Black Panther in detail because I was really—I very specifically geeked out about the costume design and stuff, so I read a load of interviews with the people behind it. As far as wider African cultural history, I don’t have that knowledge, so major disclaimer there!

But also, for me—maybe this is a generational thing, but the Borg queen from Star Trek is a person that I go to as far as ‘bald femme’, particularly with an evil dimension to it.

M: Yes. The other figure I was thinking of, was—staying within the realm of Marvel (and science fiction more broadly, I guess)—Doctor Strange.

The Ancient One is bald—and that, of course, I have my issues with, because many people say the casting there was whitewashed, and that should have been an East Asian woman. (On the other hand, I had also heard that the reason they specifically did not want to do that was to avoid playing into the stereotype of the old, wise Asian lady. So I don’t know.) I don’t know what my thoughts on that really are, but I will say that the choice to have her be bald was very cool. It very much felt, not like she was an alien or anything like that, but that she was some sort of mystical being, who kind of transcended our normal ideas of what bodies can do—and mortality, and all of that.

A: Yeah! No, I was into it. And of course, apart from any of the stuff about the casting there, I mean, Tilda Swinton is somebody who’s talked explicitly about being an actor who works within a queer aesthetic, and has that fandom going on. (Or did prior to that career move, anyway.) So yeah, no, very into that.

I don’t know if you ever saw the 1984 David Lynch film adaptation of Dune?

M: No! I did not.

A: It’s kind of historically known as a bad film that has a bit of a cult following, and there are certain aspects of it that are really queerphobic. Like, there’s a villain who essentially has AIDS. But it also has—within that world, there’s a slightly sinister group of what are essentially nuns, called the Bene Gesserit. And in that adaptation, they are all bald and wear long habits, kind of thing, and have thimbles that have spikes on them on their fingers. It’s very—I’ve got a weird, not even steampunk, but some kind of draggy, queer [appreciation of it]. That’s part of my list of influences as well.

M: I am into that! I’m gonna go take a look at that.

Does anything else come up for you in terms of interesting representations of baldness in film or in art?

A: Well, I will say: not actually within Marvel Studios, but I don’t know if you saw—not Logan, which is the more recent one, but one of the solo Wolverine films a couple of years ago? The one that’s set in Japan, from 2013?

It has a villainess—and I specifically say ‘villainess’, because I think that’s what’s going on there—who is a sort of evil chemist mutant, who produces a lot of toxins and has a mutation that makes her viper-y and all of that, and eventually sheds her skin. She eventually ends up being bald, because throughout the film, she gradually becomes more and more lesbian as her evilness is made clear. Which, on the one hand, I understand is very problematic and not cool—but also, it’s so over the top that I was really into it! In the way that I sometimes am aesthetically into very over-the-top problematic stuff. Maybe that’s just my having a thing about evil women, but.

M: Haha!

A: I’m wondering, actually—is there, like, an evil Disney queen who’s bald, or anything in that…

M: That’s what I was beginning to think about, and now actually I wonder. It’s a well established thing that villains are often queer-coded, but I wonder if the female (or femme) baldness thing is just a part of that, or if there’s a separate dimension along which we are suspicious, or maybe afraid, or feminine people (or people that we think ought to be feminine) who are bald, especially by choice. What do you think?

A: I mean, it’s worth saying also that on TV Tropes, there’s a specific page called ‘Bald of Evil’, that is, like, Walter White from Breaking Bad and Lex Luthor and people. That, mainly, is to do with men, but I guess there are female examples. So it’s worth adding to that whole context that there’s a baldness-coded-as-evil thing that is not specific to women. But having said that, I don’t think that invalidates [discussion of] the way bald women are portrayed in that way quite often.

I guess part of it that there’s also a thing of quote-unquote evil women being masculine in some way, or masculine-coded—large shoulder pads and all of that kind of thing, and trouser suits. That whole imagery of evil women in parts of pop culture.

M: Or, in some cases, over-the-top feminine. For instance, Cruella de Vil.

A: Mhmm!

M: But yeah, it really is either of those extremes. You don’t see a villainess who looks like the girl next door, unless it’s a much newer work that’s trying to subvert that whole concept.

A: Mm, right? And it occurs to me that often—I’m thinking of Ursula from The Little Mermaid, who was based on Divine. They’ve talked about that, and the actress who was playing her lowered her voice so that she could do it. But often it strikes me that not only is it over-the-top femininity that you get with those characters, but they actually are drag queens on some level. (Interesting to note: Divine specifically was a queen who had receding hair, and drew his eyebrows massively because there was so much bald head to work with.)

But yeah, I guess whether it’s massive femme hair or it’s baldness or whatever, there’s something about that trope of—I want to say drag, but I mean just in the context of… there’s something about characters whose gender presentation is deliberate, and intentional and cognisant, that is there. I think queer people grow up always feeling we have to be intentional about how we look and behave—although being autistic is part of that for me as well. I think there’s a certain thinking-about-clothes-as-costume that comes into that.

But yeah, I think that’s definitely part of that with those evil characters. On the other hand, they are designed to be fabulous at the same time as they’re evil, I think.

M: Yesss!

A: Cruella is a villain, but it’s her film. Do you even remember who the good guys were in that film?

M: So I remember that there were a lot of dogs. I don’t even know what anyone else looked like!

A: Also, as far as famous inspirations, I don’t know if you ever saw the movie adaptation of The Witches by Roald Dahl? But the Grand High Witch in that is a massive point of influence for me. She’s played by Anjelica Huston, who—was she in The Addams Family?—but she walks in and poses like RuPaul. She does the arm [movements] of a drag queen in that moment there, and eventually the hair comes off because she’s a witch and they’re all bald.

M: Sometimes it occurs to me that if drag and associated culture had never existed, where the fuck would anyone get their ideas for films or music videos? Or any of that. They really kind of owe us queers, and especially queers of colour, for that.

A: Totally. I’m thinking about drag and I’m thinking about, in the United States, southern pageantry drag, and I’m thinking about drag balls in Harlem, historically. And I guess that goes back to that whole ‘gender binary as colonialism’ thing. I’m always very conscious that people of colour, and specifically African Americans—that is the part of society that a lot of my influences have been filtered through at some point. But it’s so long ago and so deep-running that it’s easy to not think about; and also so much that it’s not obviously sort of culturally appropriative. The drag I’m aware of has obviously travelled through places like Harlem, but has also travelled a lot since then, so it’s hard to pin down what my relationship with that should be, except to be aware of it.

M: Yeah. As a white person, I of course can’t speak to what is appropriative or not. But I will say that what’s important to me is, first of all, obviously listening; and second, knowing to the best of my ability where things come from. So, some of these badass representations of baldness that we’re talking about—they’re coming from, like you said, maybe Harlem drag culture, maybe Maasai warriors. Any number of things. And I always want to know, who the fuck came up with this awesome thing? So I can thank them for it.

A: Yeah. Right! Also, at the same time, particularly characters like Divine and Ursula, there’s also a slightly more conservative (in some ways) tradition of theatrical drag—in England one would talk about pantomime dames, I know that’s not necessarily international—but there’s layers to that too, and a lot of those categories have got blurred. I guess one thing that’s helpful to think about, for me anyway, is that playing with and being critical of gender is not culturally specific. Or if it is, you’re critiquing a thing that comes from my own end of the world! So there’s that to it.

M: Well, and I think it’s important to point out that all cultures have their own oppressions and hegemony within them, and they have their own individuals and subcultures who are challenging those dominant ideas (whether that’s binary gender or something else). I think that’s something we often overlook, too, when we’re thinking about cultures that are marginalised and that we are not a part of.

A: Right. Sure. Wow, that conversation travelled!

M: It sure did! Wow. Which I think just goes to show how much deeper this topic goes than just a matter of aesthetics. Although—do love me some aesthetics!

As we wrap up, is there anything that you want to leave folks with? Any thoughts, any media recommendations, any questions for the listener to ponder?

A: Oh gosh. We’ll probably hang up in a couple of minutes, and I’ll think of, like, twenty!

M: Haha! And we’ll add them to the description, so it’s fine!

A: I don’t know—it’s probably worth saying there have probably been a load of good pieces and stuff written about this by people who are not me. So ‘Google stuff’, I suppose, is my message!

But one thing I will sort of add, on top of all of this, because I was thinking about this earlier: your hair has started to grow back now, and that is not the trajectory that mine is going to take. It’s just going to keep going in the direction it’s been going, which is ‘away’. But [here’s] one experience I’ve had about that.

You can actually—if you are beginning to experience quote-unquote male hair loss, there are ways of dealing with that medically. There are tablets you can take and there’s cream for your scalp, and they do actually work quite a lot of the time. There are ways to halt hair loss, and eventually there’s transplants and stuff like that that you can have. Which I have thought about, right? Because one does, even if you eventually do what I did and decide that you love being a bald queen. And here’s where I’ve ended up with that. (I’m interested in how it sits alongside your experience.)

My hair is eventually going to do the thing where it’s all gone on top, and I have that ring that goes by the ears and then round the back that bald people sometimes have. ‘Once that happens, it’s basically stopped falling out’ is the science of that as I understand it. It may still go a little bit, but that’s when it’s stabilised. That’s when I am interested in having a hair transplant, and here is what my thinking is about that.

I think a lot of those surgeries—‘Reverse your hair loss!’ and all of that—as very straight. Like, straight men in their forties who want to look younger, and it’s a little bit… I say a bit mid-life crisis, and I don’t want to fall back into that thing of shaming men for having feelings about hair loss. But the marketing of all of that kind of stuff is very, like, ‘Look young and virile and the women will fall for you!’ And I’m just not here for that!

So here’s my plan: when I’m old enough, and I’m forty or fifty and that’s all happened, I want to go to a surgeon who does that kind of stuff when I can afford it, and say, ‘Can you just take the hair from the back and sides of my head, and put it in the middle, please?’ Just so that I have a natural growing mohawk.

M: Oh wow!

A: I think that would be fabulous.

M: Yes!

A: So I’m like the one seventy year old in the nursing home, one day, who just has that! And I don’t even have to shave my head any more at the sides, my hair just naturally grows that way.

I think that, also, is part of my thing of trying to resist the normative culture of baldness, and instead of trying to reverse the falling-out process and go back to who I was when I was younger, I like the idea that I’ll one day do that, and it can be a continuation of hair loss, and I’ll be morphing into some new version of me instead. So that’s my queer understand of that.

M: That is fantastic, and I can’t wait to see it someday.

I think where I’ll leave off is that, even though I’m growing my hair back now and kind of thinking about what I’m going to do with it, I think that the transformative nature of my baldness, and of that experience, is something that’s going to stay with me.

When I first started out, I was heartbroken to lose my hair, because it was such a marker of queer identity for me. (And other things—it’s pretty! You know whatever.) I did not think there would be anything queer or beautiful or particularly notable about having no hair. And that first moment that night, in the mirror, that I myself as this queer space queen? Like, that will always be with me.

And what that says to me is that you can queer really just about anything. In various ways. You can take it back, you can appropriate it (in a positive sense), you can make something out of it.

I may never be bald again—or I might. Or I might have something totally different going on. I mean, I lost my breasts. That was a whole thing for another episode! And this is corny as fuck, but I feel really inspired to make everything queer.

A: I’m really into that. And on that note, here’s my actual signing-off message.

People who are not losing their hair over time the way I have, or don’t have medical stuff going on or whatever: if you’re somebody who is listening to this, and you’ve maybe thought about that idea (or even if you haven’t)—try it! Shave your head. I think everybody should do it at some point.

You can do it in the school holidays, or whenever, if you’ve got a break in between stuff in your life. If your hair is going to grow back, you may as well! (Lucky you.) I have taken so much from this, and my baldness is now such a part of me that I love and have nurtured, and that’s taught me so much, and I think it’s one of those things everybody who can reasonably try should.

M: I love that, and I’ve loved this whole conversation.

A: Me too!

M: Thanks so much for coming on and discussing your experiences. I’ve learnt a lot, and I’m excited to go and watch some of these movies and things that you’ve recommended!

A: Cool. Awesome! I look forward to hearing about it.

M: Thanks so much Alex. Have a good day! Bye.

A: And you! Bye now.


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2 AM Talks Podcast: Baldness and Queer Aesthetics

Life Update!

You may have noticed that I haven’t been writing on here very much. There are a few reasons for that and they are mostly good ones!

  1. As I explored in my last post, my cancer treatment is over–I’m cancer-free as far as the doctors can tell, mostly recovered from my surgery, and (the really fun part) officially post-menopausal. I’ve been spending a lot of time on self-care and trying to slowly dip my toes back into life.
  2. That said, it’s been less “dipping my toes in” and more straight up diving into the deep end. For starters, I’m about to switch jobs after being where I’m at for three years, which is…a very long time in Miri-Years. Yikes. Yikes.
  3. Also, I started a podcast! It’s called 2 AM Talks. The idea is that each episode, I interview a friend about a topic–any topic–that they really care about. I think it’s going to be lots of fun. You can subscribe to it on Anchor, Pocket Casts, iTunes, Spotify, Google Podcasts, Stitcher, and some other services I’ve honestly never heard of. Follow it on Twitter here. (I’ll probably write a longer post about this later because I have some Thoughts about creative endeavors and why they’re important.)
  4. On a slightly different note, I’m also writing a book. It’s a book of essays about my experience with cancer treatment, although I feel like describing it that way kind of undersells what it’s going to be. I am (for now) unusually optimistic about this compared to how I usually feel about my big writing projects, and I’m actually putting in the time and not giving up on it. I joined a writers’ group and everything! Anyway, I don’t have a title for it yet or any plans for what to do when it’s done, but y’all will be the first to know.
  5. As I also discussed in the last post, I’m gardening a lot and it’s quite labor-intensive at times but it’s AMAZING. Seriously, if you’ve ever thought that you might enjoy starting an edible garden, I suggest you go ahead and try it. It’s a very unique and indelible experience.

That’s all for now! I have some vacation coming up in about a month, which usually means more writing. I hope to have something for you soon.

Life Update!

And Suddenly, Life

My tomato seedlings.

And just like that, it’s over. The surgeon said there’s no evidence of cancer remaining in my body, my hair is growing back, my new boobs are growing steadily until I decide they’re big enough, and I’m trying to grasp that thread of my life that I left dangling over half a year ago and tie it to the one I’m holding now.

As anyone who’s had cancer knows, you’re never really “done” with it. Even after successful treatment, there’s always the possibility of recurrence, the long-term consequences of chemo or radiation, and, in my case, a slew of reconstruction-related procedures and an oophorectomy in 8 years.

That said, now—when I’ve returned to work after my surgery—seems an appropriate moment for a post-mortem on the whole thing. (Sorry, poor choice of wording.)

For a brief window of time after my diagnosis I thought it would be my unraveling. I quickly realized that, instead, it would be my becoming. If a year ago I was in my intermediate Pokémon evolution, I’m now in what feels like my final one. (Don’t forget, though, that even fully evolved Pokémon continue getting stronger and learning new moves, and that eventually someone might “discover” mega-evolutions and I might change form again. I’ll leave it to you to decide which Pokémon I might be, before this analogy completely runs away from me.)

Before this I was essentially comfortable with who I was, with how I lived my life and conducted my relationships, with the career I had chosen, with the way I spent my time, and with that most fragile of things, my body. The illness transformed the way I saw all of these things, not in the sense that it made my views totally different, but in the sense that it strengthened, catalyzed, leavened, solidified them.

Any lingering doubts I had in myself or in the people who form my inner circle disappeared. Before, there was a part of me that really believed that when the time came to sit for the exam, the people around me would fail me, and more importantly, that I would fail myself, and that I would be alone in my darkest hour. But nobody failed.

Well, perhaps a few people failed. But their grades had been slipping for a long time, and some of them had really been failing already.

I no longer doubt that my friends and family will carry me forward when I can’t carry myself. But I also no longer worry that I’ll ever become completely unable to carry myself. I don’t struggle with imposter syndrome anymore, and I don’t worry that I’m not enough of an “adult.” What does that even mean for someone who has made the decision to carve up their body to save their own life? What does that mean for anyone, really?

What I keep coming back to every time I write about this strange episode of my life is simply how banal most of it was. It was so banal that I’m not sure I could even claim that I cried more, or was sadder or more scared, on average during this time than during any other period of my life. In fact, I will still say that the clinical depression I experienced from ages 19 to 22 was much worse and left me with so much fewer resources to help myself and seek support from others.

I would not repeat so much as a month of that experience for any price. The cancer, eh, fine, especially if we can do the surgery with proper pain management this time.

The point of that isn’t to pit depression and cancer against each other generally or adjudicate whether mental illness really is worse than medical illness or vice versa; it’s just to say, I already had unimaginably more strength than I thought I did. It just hadn’t been tested and proven yet.


After my surgery, which to me represented the culmination of most of my worst fears, people wanted to know if it was really “as bad” as I thought it would be. Of course, they wanted to hear that it wasn’t. Unfortunately, it was even worse than I thought it would be. It was worse than I had expected even at my most panicky moments. So this isn’t the story of how I overcame those phobias. It’s the story of how I learned that I can survive weeks of unrelenting pain, panic attacks, and suicidality and come out the other side essentially myself.

I’m comfortable saying that I’ve been traumatized by that experience. In dreams I wake up after surgery only to be told that something went wrong and it has to be done again, over and over. Most evenings, when I’m home from the life I’ve finally returned to, alone and in silence, an inexplicable sadness comes over me—so inexplicable that I know exactly what causes it.

It’s not that I “miss my old body,” though sometimes I do. What I feel goes much deeper than that. There are memories, images, that fill me with something I can only call grief—looking back at my parents as I was wheeled away to the OR; watching them cut up my food for me when I couldn’t; walking around on the deck of their house, back hunched, trying to explain to my mom a meditation exercise I was trying in which you breathe the pain in and then breathe it out; when my friends visited me at home two days after and I sat, again hunched, mostly unable to speak or even look at them; the first time I sat on the deck in good weather, no hat, and felt the sun on my skin again; and more, and more, and more.

All of this lives in me now, not compartmentalized or repressed but very much there, just beneath the surface. It ebbs and flows and sometimes retreats deeper and other times comes closer to my skin, where I can all but feel it with my fingers when I press them onto all the parts of me that no longer feel.

It hurts all the time, but it’s also, in its own way, completely normal and healthy. I now contain a lot more things than I did six months ago, and not all of them hurt.

Rather than feeling diminished by the experience, I feel expanded. Which is fortunate because it gives me enough room to contain all of the contradictions inherent to this process. My friends were probably hopelessly confused. One day I’d be crying about what an ugly scarred half-person I am; the next day I’d be marveling at how it feels to dance, to sit in the sunshine, to run my fingers over my healing incisions. One day I would say that my life has been standing still; the next I’d be talking about all I’ve learned, everyone I’ve met, everything I’ve planned.

And then there were the times, most of which I never found the words to explain to anyone, when I felt like I was experiencing something transcendent. I had feelings that felt completely outside of my normal existence and that I couldn’t have had any other way. I’m not a religious person, so I don’t think of it that way. Instead I think of them as moments when I felt the pulse of life. I felt how precious it was, how sacred. I felt overwhelming gratitude, both towards people who helped me in even the smallest ways and towards the universe itself. I felt like I could survive anything.

And then I’d go back to feeling like a broken old piece of crap nobody wants anymore.

Well, it may be confusing, but it’s also part of the experience of being ill—and, to a slightly lesser extent, of being human. I invite you to enter the contradiction with me and make yourself comfortable.


Besides work and spending time with friends, nowadays I’m often working on my garden. Last fall I decided I wanted to try growing fruits and vegetables in the spring, and I had all these ideas about buying all kinds of plants and building a structure to house the containers and starting seeds early indoors, and for obvious reasons that didn’t happen. So I started last week. It was probably slightly late to plant seeds, but it is what it is and it’ll be what it’ll be.

I’ve always loved plants, and always felt disproportionate grief when they sickened or died. Now it’s no different, except that I’m even more aware of the precariousness of life, of the journey seeds must undertake to become plants, and how perilous all of that is. Soil, water, warmth, light. And out springs something that nourishes.

I used to feel beautiful. Now I don’t, and it’s hard to fully imagine what that even felt like. But I think I’m finding my way back to it, slowly. In the meantime, I look around at my pots full of fresh soil and think, maybe I can still make something beautiful.

I understand how plants “work,” mostly, but the more fundamental part of my brain is still stunned every time a seed germinates. I’ve now planted everything I’m going to plant, and some of the seeds have sprouted–pulling themselves up through the soil, hunched over like I was right after surgery, slowly stretching themselves out to stand tall just like I did, and finally unfurling their first two leaves, just like the first time I felt well enough to bring my arms up and stretch them out from my sides as hard as I could, feeling them become a part of my body again.

I can never fully expect them to do it. Every time I’ve ever planted a seed I’ve thought, no way, there’s no way you can just stick these tiny hard things into the ground and a week later they turn into actual plants.

And yet, inevitably, they do.


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And Suddenly, Life

The Freedom of Infertility

Before cancer, I wasn’t sure if I wanted to have kids. I knew that I had plenty of time to decide, and that I might start to feel strongly about having them at some point. But I was committed to not having them until I felt very strongly about having them, and I was also quite certain that I have no desire to experience pregnancy and childbirth. I find the mere thought of it revolting and horrifying.

Because of that, my thoughts about becoming a parent were always murky and difficult to bring into focus. I was obviously aware that adoption is a legitimate option even for people who are able to conceive and bring a pregnancy to term. But everyone I knew–and knew of–who had adopted children had done so because they couldn’t become pregnant or get someone pregnant, or because they couldn’t do so with the specific person they wanted to have the baby with.

I couldn’t imagine having to explain to dozens of nosy people why I had chosen to adopt, and face the disapproval of all the women who believe that pregnancy and childbirth is The Most Rewarding Thing You Can Do As A Woman and would look down on me for wanting to spare my body from it. When I’d shared my feelings about pregnancy and childbirth, I was usually told that if I wanted a baby badly enough, I’d be willing to do anything, even put myself through labor.

I understand now that a lot of that is post-hoc rationalization on their part. I have no doubt that if I actually had a child, I would do anything to preserve that child’s life, even go through pain and suffering like that. But since no child yet exists–the child is theoretical at this point–I’m not willing to sacrifice very much at all. Some people really do feel that way, but I can’t love someone who doesn’t exist yet.

For a long time, these were things I thought about pretty rarely, because they weren’t really relevant. I wasn’t in a place in my life to have a baby, and I had years to get to that place if I wanted to. None of my partners have wanted to have children while we’ve been together, so the conversation didn’t come up that way either.

Then, in an instant, everything changed, and I was sitting in an exam room in a gown and my oncologist was telling me that if I want to be able to conceive later, it would be a very good idea to freeze my eggs before starting chemo.

“Would it delay treatment?” I asked.

“Yes, by at least a few weeks.”

“Does that increase my risk of metastasis?”

“Any delay in treatment potentially increases your risk, though in this case it’s a small risk and many women choose to–”

“Then no.”

You know that scene in Doctor Strange when the Ancient One strands Stephen on top of Mount Everest to force him to learn how to use his nascent magical powers? That was me in that moment. The prospect of death can catalyze all kinds of learning and insight. In that moment, stranded on the mountain, I learned that I value “natural” childbearing so little that I was unwilling to accept even a very small, oncologist-sanctioned risk for it.

The doctor continued: “You seem like you know what’s right for you, but I am obligated to warn you that you might regret that decision later.”

I said: “I may feel sad about it later, yes. But I will never regret being alive to be sad about it.”

A few weeks later, I learned that even if I’m still able to conceive after my treatment, I shouldn’t. I have the BRCA mutation, which raises my lifetime risk of developing breast cancer to about 70% compared to 12% in the general population. For ovarian cancer, it’s 44% versus about 1%. Any child I conceive has a 50% chance of inheriting this shit.

When I brought this up with my doctor, he immediately told me that they can use IVF to select eggs that don’t have that gene and selectively implant those or whatever, but that sounds like 1) a massive fucking headache and 2) something that I definitely don’t get paid enough to be able to afford. In any case, I do know that that’s not how I want to have a child whatsoever. In fact, I don’t want any needles or other medical instruments to be involved at all.

So that makes two reasons so far why I can’t/shouldn’t get pregnant: the chemo may have destroyed that capability, and I don’t want to pass my genes on. Even if I circumvent these two problems, there’s a third: in order to prevent recurrence, I will be on endocrine therapy for a decade. That means that my ovarian function is suppressed and the estrogen receptors in my cells are blocked.

Theoretically, then, I could have a child when I’m 37, after that part of my treatment is over. But at 35, I become eligible to have my ovaries removed to prevent ovarian cancer. So you can bet that within weeks of my birthday I’ll be back in the hospital for that. There won’t be a window for a pregnancy to happen.

Of course, there could be if I asked to delay that surgery, which they would. 35 is just the earliest age when they’ll agree to do it. But to me that’s just like my decision about delaying chemo to freeze my eggs: in a word, nope.

So, in a matter of weeks I understood that becoming pregnant would be impossible, inadvisable, unethical, or at least more risky than I’m willing to accept. That option summarily slid off the table. I started to consider seriously the fact that adoption would be my only practical way to start a family.

At first I highly disliked this option too. There’s a lot to criticize about how adoption works in the United States. I hated to think that I might end up adopting a baby that some mother–probably young, probably poor, probably non-white–had been pressured to give up. International adoption felt out of the question to me, for similar reasons plus white saviorism. And if we’re being honest, I’m also appalled at the idea of paying such frankly ludicrous sums of money to adopt a child who needs a home anyway. It’s not like the adoption agency is doing me some sort of favor.

And I worry, too, about having a child with an unknown genetic legacy. At least in my family we know what the dangers are. With an adopted child, how would I be able to guide them to take care of their health in adulthood if we have no idea what their vulnerabilities are?

Then again, my parents didn’t know I had the BRCA gene, either.

But in any case, these are mostly solvable problems. I can do my research to ensure that my adoption is as likely as possible to be ethical and non-exploitative. I can make sure my child’s birth parents are as present in their life as they want to be. I can, somehow, save up $30,000. I can accept that we can never fully plan for medical crises.

Once I realized this, my thoughts about becoming a parent started to lose that murky quality that they used to have. I’m still not sure if or when I want to start a family, but I’m no longer distracted by my overwhelming fear of pregnancy and childbirth. Now I can imagine what it might be like to have a baby without all of those visions being clouded by phobia.

As you can imagine, things seem a lot more positive when they aren’t preceded by nine months of suffering. I imagine welcoming a baby into my home without already being wrecked with pain and fatigue. I imagine greeting my baby for the first time with my mind clear and my body strong. I imagine weathering the sleep deprivation of caring for a newborn without already being so depleted by pregnancy and childbirth. I imagine feeding my baby without pain or discomfort. (Obviously, no breastfeeding after a double mastectomy, even if I give birth.) I imagine being able to maintain a sexual connection with my partner even as a new mother. I imagine the months and weeks before I bring my baby home to be full of celebration and activity, not exhaustion, pain, and panic.

I like the idea of meeting my child standing up and wearing clothes, not lying in a hospital bed, covered in bodily fluids with tubes coming out of my body.

Weirdly, that’s what feels natural to me. Pregnancy and childbirth is what feels deeply unnatural, grotesque, and wrong.

And now I’ll never have to go through it.

Of course, that’s ridiculous to even say, because I never had to go through it. I could’ve always chosen adoption if I wanted kids. I know that. But it would’ve been a much more complicated choice, and I would’ve been expected to continue to defend it, or at least say something about it.

Now pregnancy and childbirth are off the table, and although they were never the only things on the table, they took up more than their fair share of space on it. Now there’s plenty of space for other possibilities, possibilities that I might actually enjoy considering.


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The Freedom of Infertility

Why I Told My Clients I Have Cancer

Self-disclosure–what to share about yourself with a client, and how–is a big topic of debate among therapists. Some old-school psychologists think that you should share as little as possible, and be a “blank slate” to avoid distracting the client from “the work.” Other therapists, especially those who operate within a feminist or relational lens, tend to believe that appropriate self-disclosure can strengthen the professional relationship and move the work along.

Most agree on a few things, though–don’t share personal medical details with your clients, and don’t share anything that you haven’t fully worked through already. It’s one thing to mention to a client that you went through a divorce years ago and that there’s no shame in it and that healing will come; it’s another to tell a client that you’re actually on your way to the attorney’s office after work.

I was, until recently, completely on board with these general guidelines. Then I got diagnosed with cancer, and suddenly they didn’t work for me anymore.

Almost immediately, I dreaded having to explain my absence to my clients somehow. I didn’t know anyone in my field who’s ever gone through anything like this. Neither of my supervisors at work did, either. Most of the time when something medical interferes with work, it’s rather more straightforward than cancer treatment–for instance, a surgery. You tell your clients, coworkers, and supervisors varying degrees of detail about the fact that you’ll be out for 6 weeks, and gently shut down any inappropriate questions.

I, however, was about to start chemo and I’d be working through it. I wasn’t sure how much, and I knew that might change as I went through treatment. As it turns out, it’s uniquely impossible to be vague or coy about cancer treatment. I knew right away that if I tried to spin some bullshit about how I’d be off a few days every other week for “my treatment” and then start showing up in wigs, I would come across like I’m either ashamed of it, or think my clients are children. People know what it means when you miss work every two weeks and lose your hair.

Unable to get any clear direction from professionals with more experience, I went next to Google. Here I found a number of articles by therapists who’d had cancer. They all told their clients that they’d be “leaving this position” and referred them to other therapists. I was confused. Were they not planning on returning to work? Would they have to just build up an entirely new client base? That sounds like a lot of fun on top of recovering from chemo.

One article described a therapist processing her imminent departure with her clients and having to pretend that she was moving on to another job, and reassure her clients that it wasn’t because of them and that she really valued working with them.

Later, she received an email about her own former therapist, who had terminated treatment with her the same way. He’d died of cancer.

Ultimately I decided that this level of deception and fakery not only goes against my ethical values, but would literally be impossible for me to manage. Telling my clients I had cancer was painful enough; I couldn’t imagine having to also pretend that the cancer was actually a cushy new job. Having to apologize to my clients for leaving our work unfinished as if it had been my decision, rather than a horrible thing that happened to me.

So I went for the opposite extreme. I told every single one of my clients that I’ve been diagnosed with breast cancer and would be undergoing chemo followed by surgery. I invited them to ask me any questions they wanted about it and reassured them that I wouldn’t answer anything I truly felt uncomfortable with. Some didn’t ask for any details at all. Most asked if I felt okay to be at work. (I did.) A few wanted to know more–what stage, what type of surgery, what chemo feels like, if cancer runs in my family.

Was it awkward? Sometimes. Did it distract from the client’s therapeutic needs? Maybe, in some ways. Is that ideal? No.

The problem, though, is that therapists are in fact human, and we have human bodies that fail in the same glorious ways as everyone else. I don’t believe I could’ve continued to do this work effectively throughout my chemotherapy while actively deceiving clients about what I’m going through. I also don’t think that would make me a very good role model.

A lot of surprising conversations came out of it. One client revealed his own battle with cancer, years ago. He’d never talked about it. A few mentioned that they really ought to be doing breast self-exams because it runs in their families; I told them where to get more information and explained that when caught early, breast cancer is extremely treatable. One client, surprisingly, brightened and smiled when I told her. She explained that a beloved relative is a survivor of breast cancer several times over and that this relative is her mentor and source of inspiration.

Another client said she was glad I told her. “I’ve been working on being more vulnerable and open with the people in my life,” she said. “If you’d tried to hide this, it would’ve sent the wrong message.”

That conversation was a reminder that while therapists often keep personal information from clients in order to “protect” them or to avoid distracting them, clients may interpret this secrecy as a product of shame, callousness, or both.

That’s not to say that my transparent approach hasn’t had its downsides. It does sometimes make my clients feel awkward about sharing their own problems; cancer tends to be that thing people remind themselves at least they haven’t got, so it can be weird to vent about your shitty job when someone’s just dropped cancer into the conversation. But I always reassure my clients that 1) I’m here because I want to be, and 2) I still see their problems as valid and important even though I have cancer now. The awkwardness usually doesn’t last.

It does sometimes make things harder for me, though. When I was first diagnosed and didn’t know the staging or prognosis, I could hear the unasked question on many of my clients’ minds. No, I didn’t know if I was going to survive or not. (Even now, with chemo going swimmingly, I can tell you that I’m pretty unlikely to die of cancer, but recurrence is a thing and it could happen anytime.) I could only tell my clients the same thing I could tell myself–that I had no reason to expect the worst, so therefore I’d hope for the best.

Sitting with uncertainty is one of the most difficult things in life, and probably the most difficult thing about cancer especially. Yet it’s also one of the most important skills to develop, for me and for my clients too.

As treatment went on, I often found myself having to be a bit performative when clients asked how I’m doing. It’s true that chemo isn’t too bad and that I feel okay most of the time. But some days are very hard. Yes, there were days when I wished I’d stayed home from work, but I didn’t because I wanted to be as consistent as possible with my schedule. (There were other days when I called off even though I’d planned to be there.)

Most days, I’m not my best self at work. I’m just not. It’s just impossible. The only other option would’ve been to take all four months of chemo off work entirely, but that would’ve been worse for my clients, worse for me, and ultimately impossible. I don’t have enough medical leave for that.

So although I don’t tell my clients many details about treatment, I continue to be transparent. I’ve told them that I feel tired a lot. I’ve mentioned that chemo sometimes leaves me with bone aches, which is why I stay home a few days after each treatment. I keep a positive attitude and tell them that many chemo side effects are very well-managed with medication and that chemo isn’t what it used to be. My hope is that if any of them end up being diagnosed with cancer, or having a loved one who is, they’ll remember that, and they’ll remember not to be afraid and to ask the doctor for help if they need it.

Disclosing this to my clients a week after diagnosis–telling 40 or so people that I have a potentially lethal illness and then taking care of them around that disclosure–is the most difficult challenge I’ve faced in my professional career so far. I found myself having to reassure people about something happening to me, something I found (as most people would) horrible and terrifying.

This situation turned the usual ring theory inside out. Normally the person at the center of a trauma or tragedy is the one who gets taken care of by everyone else. But as a therapist, it’s my job to take care of my clients. Which is probably why the conversations were sometimes so raw and awkward–my clients sensed that they “should” be the ones comforting and reassuring me, but they also understood that that’s not their role. And because of the strong therapeutic relationships we’ve already cultivated, we were able to talk about that directly.

I had my last chemo treatment this past Monday, so things are going to be more straightforward from here on out. But that doesn’t mean I’ll be able to stop having conversations about this with my clients. I have multiple surgeries and other procedures in my future and it could drag on for years. I may not be able to be at work as much as my clients (or I) would like, but I hope that by being open and honest I can reassure them that help is available even when I’m not there and make sure they know how much I wish I could be there with them.

Over the past four months, I’ve had to radically redefine what professionalism and appropriate self-disclosure mean to me. As it turns out, vulnerability isn’t just good for my friendships and partnerships; it’s good for my professional relationships too.


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Why I Told My Clients I Have Cancer

Where I Am and Where I’ve Been

Closeup of a frozen creek.
A scene from my favorite winter hike so far. Also an apt metaphor.

For weeks now I’ve been begging myself to write something, anything. But the words just don’t come.

It’s not that I don’t care anymore about the things I used to write about. Though I do click away from the news a lot of the time, I know I care, it’s just that my brain is usually too full with a buzzing sort of panic about my impending loss of autonomy, mobility, dignity, bodily integrity. That’s when I’m not panicking about simply dying.

I think about very little else anymore. The surgery. Researching everything I can about the surgery. Looking up and buying things for after the surgery, special clothes, pillows, anything to reduce my dependence on other people. Writing down lists of questions to ask some doctor at some point. I’m not always sure which questions should be directed to whom–the medical oncologist, the surgical oncologist, the plastic surgeon, the anesthesiologist, a social worker. Recounting to my parents my meticulous list of boundaries to retain whatever control I can over this impending horror–instructions about when they can and can’t see me in the hospital, when to give my phone back to me, who can touch or see what or how. Listing activities I may be able to do while I’m recovering–reading, writing, knitting, gaming, drawing–and making sure that I acquire everything I need for all of these things just in case something sticks. Planning out outfits that I will be able to dress myself in, independently. Asking the surgeon questions like, “Are you saying you don’t RECOMMEND that patients do this on their own, or just that they may find it uncomfortable and want to ask for help?” Because I will take the discomfort.

It has turned into a full-on obsession, and some part of me realizes it’s not healthy, but at the same time it’s also a coping method. It is easier, and probably healthier, to make packing lists than to let myself “be with” the fear, and imagine over and over being ripped open and stitched up again with tubes coming out of places they shouldn’t be and stuff that’s not supposed to be inside my body being inside of it and stuff that was supposed to be in there not being there anymore. And to be clear, I certainly imagine plenty of that. It comes completely unbidden. It’s a wild, untamable, primal fear. I’m like an animal being led to slaughter. My mind flings itself against the bars of its cage, over and over, despite the damage it does.

This is what it looks like to face down your worst, most paralyzing phobia. I used to say, half-jokingly, that if I ever required the sort of surgery that involved general anesthesia and opioids, I would refuse and simply die. Life called my bluff. I’m not dying, at least not yet.

Plenty of people have pointed out that there’s something maddeningly counter-intuitive about treating early-stage breast cancer, and that’s that it often feels like poisoning and mutilating a perfectly healthy body. I had no symptoms aside from an innocent-looking lump that nobody, not me and not the doctors who initially observed it, really thought could actually be cancer. Now that lump is gone thanks to an overwhelming response to the chemo, and I have to face the idea of having part of my young and tumor-free body hacked off so that I don’t die later. There’s also the thought that if I hadn’t noticed the lump, I might very well be dead now, or rapidly getting there.

The thought keeps going through my head: “And for what?” But I know for what. It’s so that I don’t die. That’s literally all. And though a double mastectomy doesn’t guarantee a cancer-free future, it at least offers a strong hope for one. Without it, that hope would be quite frail.

At the same time, and perhaps because I never exactly felt “sick” or thought of myself as sick, it feels like I’m sacrificing an awful lot just to have what I always naively assumed I’d have anyway–a reasonably long and healthy life. The surgery doesn’t feel like a treatment; it feels like the disease itself. I’m not healing from cancer, I’m healing from something I elected to have done to me, for reasons I can’t quite remember some days.

And yet, being the sort of person I am, I never seriously considered not doing it. Anything other than the double mastectomy seems like a betrayal of who I am, not to mention a betrayal to my loved ones who would have to spend the rest of their lives, like me, fearing recurrence. None of us deserves that kind of fear.

The surgery is a sacrifice that present me is making for future me, for some version of myself I can’t quite envision yet but will have to eventually become. That person will have accepted her new body, or at least gotten used to it. That person will, like the women in my support group, joke cheerfully about the awkward things that happen when you have no sensation left in your chest anymore. That person will maybe date new people again and find some way to explain the breasts, or not. That person will still think about cancer but not every single day.

That person will no longer believe that she’d rather die than get surgery. That person will also be much older than her years.

Don’t get me wrong, this isn’t the way I’d recommend doing exposure therapy for your medical phobia. But this is the way I’ll have to do it.

This is my longest, darkest winter, the winter time stood still. You don’t move forward when you’re fighting something like this; you’re just planting your feet, pushing back, and hoping not to be thrown off the ledge. My career is at a standstill—I have no idea when I’ll get enough supervision hours for independent licensure now. I forget the last time I met a new interesting person; it used to happen every week. I exercise and yet my body grows no stronger. I don’t really get to try and learn new things anymore. Everything I’d planned to do—practicing on the motorcycle, starting a vegetable garden, volunteering at the humane society or the botanical garden, planning a future coaching business, looking into selling my bread at the farmers market—is now delayed indefinitely.

That I knew something like this was probably coming doesn’t help much. For the two years leading up to my diagnosis—the two years since I moved to Columbus—I loved my life so much that I knew it couldn’t last. “Something’s going to happen to fuck this up,” I thought. I’d spent most of the first 24 years of my life pretty miserable, and now I finally wasn’t, and it couldn’t last.

And it didn’t.

And yet, unbelievably, it also did.

There is so much joy still in my life, if not every day then enough to carry me through. I spend entire days with friends sometimes, or else catching up on my library books with the cats cuddled up against me. My parents and sister and I laugh till our sides ache as my brother demonstrates parkour on the lawn in front of my house. Letters and cards arrive weekly in the mail from distant friends, some of whom I’d honestly thought had forgotten me by now. The teapot whistles urgently on the stove. Snow falls, and then rain, and then more snow again. There’s an orchid show at the botanical garden, and I went with my camera, struggling to kneel to take the pictures and stand back up but doing it anyway. It’s 8 degrees, but we go hiking anyway. The regulars at my yoga studio are starting to recognize me, and to know what the hat means. My older brother in London sent me a Switch for my birthday; now when I close my eyes I see beautiful scenes from Zelda instead of body horror. My body aches unbearably sometimes from chemo, so people bring me things. My oncologist calms my panic with his presence the moment he enters the exam room. A coworker finally learned to text just so she could check in on me when I didn’t answer the phone.

And, outside, the days slowly lengthen, and the January chills are gone. Three seasons will have passed by the time all of this is even on its way to being over. The mint in my backyard will have grown back. It has a way of enduring.

As it turns out, I have a way of enduring too.


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Where I Am and Where I’ve Been

Everything You Ever Wanted to Know About Having Cancer

[Content note: medical stuff]

A few weeks/months ago (what is time, anyway?) I invited my friends to ask me absolutely anything they wanted about what it’s like to have cancer. The result was this epically-long Q&A, which was actually quite fun for me to compile. Folks have been saying it’s useful and interesting for them too, so I decided to make it public.

If you have questions you’d like to ask and you know me well enough to know how to reach me, feel free to send them my way and I’ll answer them when I update this. Ask anything you want; if I’m not comfortable answering, I won’t. But you can probably tell from this article that there’s not much I’m uncomfortable answering.

The first set of questions is dated November 23, 2017, so some of the details of my treatment have probably changed.

Continue reading “Everything You Ever Wanted to Know About Having Cancer”

Everything You Ever Wanted to Know About Having Cancer

Sicklit Literally Traumatized Me

I promise this isn’t turning into a Cancer Blog. Just give me a while to get it out of my system. Along with (hopefully) the actual cancer. 😛

Almost two months ago, I was diagnosed with breast cancer. It’s stage 2, but for the first week, I didn’t know that, which made it probably the most terrifying week of my life so far.

So I started panicking, which is about what you’d expect. For starters, I immediately decided that I was going to die. Like within a year. This subsided somewhat after I learned that the cancer hadn’t spread.

But a lot of my panic was coming from some weird places. I kept experiencing intrusive thoughts about how horrible chemo and cancer in general would be, and they were VERY specific and visual thoughts.

I’ve never been close to someone going through cancer treatment. Certainly not close enough to see what happens to them. My grandfather had it when I was very little (and died of it later), but all I remember of him is that he was happy, did calisthenics every morning, and always gave me fruit to eat, so I’m guessing I don’t have much memory of his treatment.

My only exposure to what cancer and chemo are like is the media. As a child in elementary school, I remember being assigned cute picture books about kids with leukemia. Later, I read a few YA novels where cancer was a prominent theme—what folks now call “sicklit.”

Sicklit is controversial because there’s the usual uproar about kids and teens reading about topics that they’re “too young” for, as if kids and teens don’t experience sexual assault, illness, or abuse. The opposing argument is that reading these books will help young people confront these things if they have to experience them, as well as helping them empathize with others who may be experiencing them.

Usually, that’s the side of any argument about children’s media that I’d fall on. However, right now I also have to acknowledge the fact that I’ve basically been traumatized by literature about cancer meant for young people.

That entire first week, my brain was constantly re-showing me vivid scenes from books I’ve read. Excruciating bone marrow transplants. A teenager going outside at night during a thunderstorm wearing just her nightgown, hoping to catch the flu so her next chemo treatment gets delayed. A girl shocked and crying when she finds a chunk of hair falling out while she brushes it.

That last one about kills me, especially. Don’t get me wrong, losing your hair (if that’s a thing that’s important to you) would be painful no matter what, but why her shock and terror? Did nobody fucking bother to tell her that hair loss is the most common side effect of chemo? Did nobody offer to take her to a salon to get her hair buzzed or shaved, and let her pick out cute wigs and hats and feel some shred of control over the situation?

I mean, sure, it’s fiction. Of course it’s unrealistic. But it’s unrealistic in the most sensational possible way.

Don’t even get me started on teenagers with cancer meeting, falling in love, and dying. That shit made me feel guilty for even having partners right now.

The more I talked to other people, the more I realized that it wasn’t just me, and I hadn’t just read a particularly horrible set of books. My partner asked me once how it feels to get chemo, and recalled a book he’d read about a teenage girl with cancer who described it something like this: “Every drop of that poison burned as it dripped into my veins.”

I about died. Unlike (apparently) the author of that book, I actually have cancer, and I can tell you that chemo feels like absolutely nothing. It’s just like any other IV infusion. You just sit there and chill out or sleep. Yes, sometimes having an IV in your arm can cause some mild discomfort. BUT IT IS NOT SUPPOSED TO FEEL LIKE BURNING. PLEASE IMMEDIATELY TELL THE NURSE IF IT FEELS LIKE BURNING. I’m sorry for yelling but really, you need to tell your nurses and doctors if stuff hurts that’s not supposed to hurt, and how are you supposed to know it’s not supposed to hurt if you read a whole stack of books telling you in the most graphic and gratuitous ways that it does hurt?

That said, over a long period of time, chemo infusions can damage your veins. That’s why they’re not generally done through IVs anymore, but through ports. I explained this to my partner, and he said that in the book, the girl refused to have a port because it sounded weird, and her doctor didn’t try to reassure her, explain how it works, or warn her about the drawbacks of IVs for chemo. You know, informed consent. Okay then, guess we’re going for damaged veins and a hell of a malpractice lawsuit.

I’m glad my partner and I had this conversation so that he didn’t have to go into this thinking that I have to spend two hours in excruciating pain every two weeks for four straight months. Vicarious trauma in caregivers is a thing, just like the vicarious trauma I’m experiencing from reading these things that never even actually happened.

Sometimes when I talk about sensationally unrealistic portrayals of cancer treatment in YA literature, I’m told that somebody’s friend somewhere had cancer and their doctor WAS totally terrible, and their pain was not managed in any way, and they were NOT warned about obvious things like nausea or hair loss, and they WERE told to just suck it up and deal. Yeah, it happens. Some doctors are totally terrible, and until recently many cancer treatment protocols really didn’t care about side effects, and sometimes people are told to suck it up even when relief is totally available.

And it would be one thing if these types of stories effectively prepared young people to deal with such things in real life. But they don’t.

Because the way you deal isn’t by internalizing the idea that your suffering is inevitable and this is just how things are going to be. The way you deal is by learning how to advocate for yourself when possible, and developing resilience and coping skills for the rest.

That starts with knowing that 1) you can and should tell your doctor about all of the side effects and discomfort you’re experiencing; 2) you’re allowed to ask your nurses, techs, and doctors ALL of the questions you want; and 3) lots of procedures and treatments can be altered to make them more tolerable for you, but they won’t be unless you ask.

For instance, my entire treatment team knows about my medical phobia and how it works. (I should note that this phobia is improving significantly now that I have to confront it constantly.) That’s why they often have on hand ice packs and smelling salts in case I start passing out, and they usually find a way to prop my feet up to reduce the chances that that happens. I’ve been prescribed an anxiety medication that I take before procedures, including chemo, and a topical lidocaine cream, which I use beforehand to reduce the sensation of needle sticks. (It’s not that I mind the pain itself; it’s that the pain triggers the panic reaction.) My nurses know not to tell me any unnecessary details about what they’re doing, and they expect to see me put my eye mask on so I don’t see what they’re doing, either.

As a result, I don’t have to deal with uncontrollable panic attacks, and my nurses and techs don’t have to waste their valuable time waking up my unconscious ass and waiting for me to stop sobbing. All I had to do was ask.

I’m sure someone’s going to ask me if I think that authors just shouldn’t write about teenagers dying of cancer or suffering through treatment thereof, but as always, I find that question boring. No, I don’t advocate censorship. Anyone should be able to write (almost) whatever they want. Free speech. Next.

A question I find more interesting is: Do authors who write for young people have a responsibility to try to write in a way that makes their lives suck less rather than more? I think the answer is yes. And as a young cancer patient—so, exactly the person that these books are supposedly for—I can tell you that irresponsibly-written cancer narratives contributed to making my life an unbelievable living hell when I was first diagnosed. I was having flashbacks to stuff that never happened to me or to anyone else. I still do, sometimes.

So much of the pain and misery that comes with a cancer diagnosis is unavoidable. This was completely avoidable.

Of course, there’s a good chance that despite patronizing claims to the contrary, most YA novels about cancer aren’t really meant to prepare young people for anything other than fetishizing and gawking at other people’s pain. Yes, there are some that encourage empathy, too—I do think that The Fault in Our Stars is well-written in that way.

But the fact is that most young people—most people—aren’t going to get cancer. Most people are only going to know someone who does, and maybe the more painful and horrific they think the treatment is, the more they will sympathize, and the more they will help, and the more grateful they will be that it wasn’t them.

So, what I should’ve realized during that agonizing first week is that those traumatizing books were never even written for me. They stopped being for me the moment I got that phone call.

Which is too bad, because I could’ve used a book that could guide me through it. A book that’s honest about the experience of cancer, in all of its horror but also in its mundanity, its potential for nerdiness and curiosity, and even its moments of transcendent clarity. I’m never one to sugarcoat, but even I’ll admit that it’s not just some endless parade of painful side effects, hair loss, and needles. In with all of that bullshit you also get your teenage brother always hugging you super tight and not letting go until you do, and watching the people in your life come through for you in the most extraordinary ways, and having your cat insist on sitting on your surgery incision which hurts but also oh my god she really thinks she’s healing me, and dancing naked–truly naked, no cap or wig–to Christmas music while decorating the tree because it’s almost the end of the chemo cycle and I feel fine, and getting to do physical therapy in a sweet heated pool that the hospital has and floating in that pool and letting the back of your head rest in the water until you don’t hear anything anymore and it’s all OKAY for a goddamn second.

Nobody wrote that book for me. Maybe after I kick this thing, I’m going to write it myself.


A thought that occurs to me that I didn’t find a way to stick anywhere into this essay: YA novels about cancer focus disproportionately on death. I mean, yes, to state the obvious, cancer can be fatal. I don’t think we really need to belabor this point. But did you know that the 5-year survival rate for all childhood cancers combined is 81%? Did you know that the 5-year survival rate for breast cancer, which is the most common cancer, is 90%, and for prostate cancer, the second-most common, it’s 100%? These statistics are from 2006, which means that they’re probably even higher now. (Except prostate cancer. Sorry, probably not much improvement to be made on that one.)

DID YOU ALSO KNOW THAT THE HPV VACCINE PREVENTS UP TO 70% OF CERVICAL CANCERS AND THAT YOUNG ADULTS URGENTLY NEED TO KNOW THIS FACT

And how many of the cancer books I read contained even a little fucking blurb in the back about breast self-exams? Zero. A breast self-exam saved my life. I rest my case.


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Sicklit Literally Traumatized Me

So Your Friend’s Just Been Diagnosed With Cancer

Lost? Confused? Me too. I was just as surprised to be diagnosed with breast cancer at the ripe ol’ age of 26 as most of my friends and family were.

Here are a few things I’ve learned so far about what’s helpful and what isn’t when it comes to receiving support from people. Obviously, I only speak for my own experience here, but you’d probably hear a lot of similar things from other cancer patients.


1. Read/listen carefully to what we say.

Since I draw so much of my strength from writing, I turned to it immediately when I got my diagnosis–not just to talk about my feelings and experiences, but also to express what I needed from people who wanted to help. I wrote out detailed instructions and set clear boundaries. (As did my roommate, who started a Facebook group with some of my other friends and used it to coordinate support.)

Nevertheless, both of us were often swamped with questions that could easily have been answered by reading what we’d posted. People repeatedly asked for my address, gift preferences, dietary needs, and other stuff that my roommate had clearly addressed in multiple posts. It was, honestly, really frustrating. I understand that all of this is hard and that paying attention to written text can be hard and being a human is hard. But surviving the first few weeks of a cancer diagnosis is especially hard, so please make it easier on your newly-diagnosed friend by being attentive to what they’re telling you.

2. Don’t inundate us with irrelevant and overly-specific questions about gifts.

On a related note, it was pretty overwhelming when, within the first couple days of my diagnosis, comments and messages like these started pouring in: “Is there anything I can get you? Do you need hats? What color hats? What type of yarn? Do you like letters? Would it be okay to send a card? What’s your address? What kind of food do you like? Can I send cat photos?”

I 100% understand where this is coming from. People want to help, and they don’t want to help in ways that are harmful or unwanted, so they ask lots of questions about exactly what kind of help would be welcome.

But guys. I don’t care what color hat. Those first days, when I was still waiting for all my test results, I was facing the fact that I could be dying. I could find out that it’s metastatic, that I have a few months or years left, that I’m going to have to tell my 12-year-old sister that I’m fucking dying. I wanted to take these well-meaning people by the shoulders and shake them and tell them that I don’t care what color hat.

If you’re already making/doing something specific, such as knitting a hat, it’d be more helpful to ask, “Is there anything I should keep in mind when making this for you?” That’d be a good place for me to ask you to avoid Breast Cancer Pink, for instance. (Although, again–I really don’t care about stuff like that very much right now.)

Otherwise, I’d suggest directing these questions to a caregiver, such as the person’s partner(s), family, or closest friends.

3. And about those cat pictures…

I’m going to reiterate that I’m only speaking for myself here, and not for any other survivors or anyone else living with a serious illness, but boy howdy did it ever rub me the wrong way when people immediately wanted to send cat pictures following my diagnosis. Cat pictures are nice for when you’ve had a stressful day at work or you need to forget about political news for a bit. “Sorry to hear about the cancer, here’s my cute cat” doesn’t really work.

4. No medical advice. None. Nada.

In my opinion, giving unsolicited medical advice when you are not that person’s doctor is always wrong, for a variety of reasons. However, it’s especially wrong when the medical condition in question is both deadly and very poorly understood by most laypeople. (Seriously–I’ve learned a ton about cancer these past few weeks that I never would’ve known otherwise.)

For example, someone literally tried to tell me that there’s doubt that a prophylactic mastectomy is effective for preventing breast cancer. But according to all of my doctors and all of the information I could find on reliable websites, people with a genetic predisposition to breast cancer can reduce their risk by 90% if they have that surgery. Because I have the BRCA-1 gene mutation, my risk of developing a second breast cancer within 15 years is otherwise 33%. (My lifetime risk of developing breast cancer at all was 55-65%. So yeah, I wish I’d known that and gotten the surgery years ago.)

So please do not give me advice that could literally kill me. Thanks.

5. Keep talking to us about your own life and problems.

A lot of times when someone gets diagnosed with a serious illness, people around them start feeling like they shouldn’t talk about their own (comparatively) less severe issues. Please do talk about them! I mean, obviously take your cues from the seriously ill person, but in my experience, it’s comforting to listen to friends vent about work or people in their lives or whatever. Checking in before/while dumping heavy stuff on someone is always a good idea whether they have cancer or not.

6. Resist the urge to relate our struggles to yours.

This is often an issue when someone’s talking about a shitty thing they’re going through, but when it comes to stuff like cancer, it’s especially relevant. The morning sickness you had during pregnancy is not like the nausea folks have during chemo. Your choosing to shave your head for aesthetic reasons is not like having your hair fall out because cells in your body are being destroyed. Choosing to get breast implants is not at all like having to have a mastectomy and reconstruction. And so on.

Sometimes, folks with other serious illnesses besides cancer do have very relatable experiences. (For instance, I met someone who has to have chemo because of a totally non-cancer condition.) Otherwise, just center the experiences of the person who’s going through the serious illness.

Note that I do not mean it’s wrong to simply say, “Ugh, yeah, I have nausea every day from my psych meds” or “That sounds a lot like me when I was pregnant.” Of course some cancer-related experiences are going to resemble some non-cancer related experiences.

Where comparisons fall flat is when you’re trying to comfort or reassure someone, or when they’re trying to talk about their cancer and you keep changing the subject to your pregnancy. If I’m terrified of reconstruction surgery, you’re not going to be able to reassure me by reminding me that some people (whose choices I respect but completely do not understand, by the way) choose to get implants, because that experience is going to be completely different.

7. Remember that most side effects of chemo are invisible.

Cancer patients often talk about the dreaded “chemo brain,” which is the shitty mix of mental fog, fatigue, and executive dysfunction that often happens during chemo. Just because we’re not vomiting or bedridden doesn’t mean we’re not experiencing some pretty serious side effects.

For me, this means having a lot of trouble with time management. Sometimes time seems to pass way more quickly or slowly than I would expect. I have a very hard time processing things like “when do I need to start getting ready in order to leave early enough to arrive at Thing on time.” I’m pretty much late to everything these days. The fact that I’m often so tired that standing up feels impossible doesn’t help.

I try not to keep anyone waiting for too long, but it helps a lot when people are able to be flexible.

8. Look for the less obvious ways to help.

When someone gets diagnosed with cancer, people usually gravitate towards the most obvious, visible ways to help: making meals, giving gifts, and so on. I also got tons of invitations to come hang out at someone’s place. However, the most helpful thing for anyone whose condition involves fatigue and needing to sleep, eat, or take medication on very short notice is offers to hang out near my home, not yours.

Even when people offer rides (which is very helpful, by the way), there’s always the potential discomfort of having forgotten my anti-nausea meds at home or desperately needing a nap or getting hungry in someone’s house and not knowing what to do or running out of tissues. I love offers to go to a restaurant or coffee shop near my place, or hang out at home.

A good question to ask someone is, “Is there anything you need that folks haven’t been offering to help with?”

9. Please don’t take it personally if we don’t take you up on your offers to put us in touch with your cousin/grandmother/friend-of-a-friend who has/had cancer.

Sometimes it’s helpful to talk to people who’ve been through it; sometimes it’s not. Regardless, that’s why support groups exist, as well as tons of one-on-one peer support services. I’m not really comfortable with calling a total stranger on the phone to talk about cancer, especially when it’s someone at least twice my age (which it often is).

Every cancer is unique, but the experience of young breast cancer patients in particular is often quite different from that of older people, because ours tends to be more aggressive and difficult to treat, and we tend to have less material/social resources and support than older survivors do. Many of the older survivors I talked to told me quite cheerily that they simply had surgery and were back to their normal lives soon after. That’s not at all how it’s going to be for me–I have to have chemo, then surgery, then possibly radiation, and then ten years of hormone blockers, plus being constantly vigilant for symptoms of ovarian cancer, which I’m also at increased risk for and which has no reliable early detection methods. Not super helpful to talk to people who didn’t have to deal with most of that.

10. Mind the boundaries.

There’s something about getting diagnosed with cancer, and talking about it openly, that makes some people assume that our relationship is much closer than it really is. It was weird to have people I barely know telling me that they hope I visit their city so we can hang out, or to offer help with stuff that’s honestly really personal and not at all a part of my life that I’d normally share with them. (For instance: decisions about my breasts and what to do with them.)

It’s true that there are certain boundaries that come down out of necessity when you’re going through a serious illness; for instance, my parents now know a lot more about my health, body, and lifestyle than they would’ve known otherwise. But that’s because my parents are my primary caregivers. They need to know that stuff in order to take care of me. You, random person who added me on Facebook because you like my writing, are not my primary caregiver. If you wouldn’t normally talk to me about my breasts or expect me to include you in my travel plans, don’t do it now, either.

11. Unless otherwise stated, assume that your gift/gesture is received and welcome.

In most situations, it’s rude not to reply with a “thank you” when you’ve received a gift from someone. When you’re newly diagnosed with cancer, it’s not. When people message me with “Did you ever get my package?” or “So was that hat I sent a good fit?”, the message I get is that I should’ve made sure to reach out and let them know that I received the gift and that I like it (whether or not I actually did like it), even when my days are a messy jumble of medical tests and treatments.

Personally, I take gratitude very seriously and I’m keeping a notebook of everything kind anyone does for me so that I can properly thank them later. (The key word there is LATER: when I’m not in the middle of chemo, probably.) But this isn’t something you should expect of your friend with cancer. This isn’t a normal situation, so normal rules of etiquette don’t apply. If you know that you wouldn’t be happy to give this gift or offer this help without the validation of a personalized thank you, don’t give it.

12. Assume that other people are doing what you’re doing. 

While that’s not always true, it can help you avoid doing things that are going to frustrate your friend or make their life more stressful. The previous suggestion is a good example—one person asking if I’ve received their package may be okay, but multiple people asking gets really overwhelming. One person asking for detailed instructions on how to knit me a hat isn’t that big of a deal, but providing multiple people with instructions for multiple types of knitted items is way too much.

“What if everyone behaved the way I’m behaving” is a great question to ask ourselves in many situations because it’s a reminder that it’s not just about you, and your gift, and your need to be helpful, and your anxiety that your gift wasn’t appreciated enough.

For me, there’s no such thing as too many cards and letters, or too many texts that say “No need to respond to this, but I love you and I hope your treatment is going okay.”

13. Decide what kind of support YOU want to offer, and offer it.

It’s a cliche by now that “Let me know if you need anything!” isn’t a super helpful thing to say (not that I mind it—I just take it literally), but the way to really grok that is to understand that most struggling people would rather you help in ways that YOU want to help rather than turning yourself into a put-upon martyr at our beck and call. That’s not a dynamic healthy people like.

Ask yourself what kind of help would bring you joy to offer, and what kind of help you’re good at giving. Do you like mindless household tasks? Cooking? Taking care of pets and plants? Organizing fun distractions? Being a workout buddy? Figure it out, and then offer that.

Of course, there are some tasks that need to be done even if nobody particularly loves doing them. (Some horrific things I’ve heard about post-surgery recovery come to mind.) But these tasks are for caregivers, not concerned friends. My parents will be the ones to make the noble sacrifice here, not you.

14. Comfort in, dump out.

It’s a classic for a reason.


As I’ve reflected more on what I find helpful and what I don’t when it comes to receiving support from people, it occurs to me that the most irritating, upsetting, or tonedeaf responses are also the ones that seem like they’re covering up something else. I don’t want to presume and play psychoanalyst with people (that’s from 8 to 5 and with pay only), but sometimes it’s pretty clear that the person I’m interacting with 1) doesn’t know how to react when a friend has cancer, 2) realizes on some level that they don’t know, and 3) is panicking about this.

“Can I knit you something? Do you need hats? What are your favorite colors? Do you care which type of yarn?” often seems to be masking “I’m worried about you and I have no idea what I could possibly do to help.” “So did you get my package???” is maybe actually “I sent you this thing without asking first if you needed it and now I’m feeling awkward because maybe you didn’t need it or want it.” Unsolicited medical advice often means, “Cancer terrifies me and I’m trying to believe that if I do everything right it will never get me like it did you.”

Again–not necessarily. Not all the time.

But the further I get into this whole ordeal the more it feels like honesty and openness is the way to go–just like it is in almost every other situation we find ourselves in. I would rather hear that you care about me than answer a dozen questions about exactly how you can help. I would rather one silly card with poor handwriting than The One Perfect Gift That Will Make All This Go Away–because that doesn’t exist.

Send the card. Offer the practical household help. We’re all gonna be okay.


Two great books for those interested in learning more: There’s No Good Card For This and The Art of Comforting.


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So Your Friend’s Just Been Diagnosed With Cancer