Back Through the Fire

Smoke after a forest fire.
Photo by Joanne Francis on Unsplash

[Content note: cancer, illness, suicide]

In November, I had my last cancer-related surgery. My temporary tissue expanders were replaced with permanent breast implants, and I was instructed to give my body six weeks to recover, after which I could return to my usual activities.

After five weeks and 6 days, I gave in and started exercising. It was almost the New Year. It was deep winter, a time of planning and setting things in motion. I was finally done with treatment, and I was ready to live again.

So for the next six weeks, I lived. I worked out almost daily. I started my private practice. I made plans. I designed a backyard garden. I took classes, learned new things. I took on new roles at work. I returned to freelance writing.

For six weeks, I lived. I was determined to get back everything I’d lost to cancer, and then some. I enjoyed my time with family, unburdened at last by the demands of treatment or recovery. Having emerged unburnt from the fire, I felt that nothing could stand in my way.

For six weeks I lived like a person reborn. This lasted until February 13.

That day my mom told me she had cancer too. That day, my newfound momentum sent me clear off what I now realized was a cliff, and like the coyote in the cartoon, I looked down and found myself unmoored, unsafe, and spiraling down.

Continue reading “Back Through the Fire”

Back Through the Fire
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Speaking Gently to My Body

I’ve always criticized what I’ve sometimes called the chocolate-and-bubble-baths model of self-care, where a series of supposedly “pampering” actions is supposed to somehow replenish you and make you ready to face the world again.

But I think I’ve found the usefulness of these types of activities, and the answer, as usual, lies in mindfulness and intentionality rather than escapism and consumerism.

I used to have a lot of body image issues, and then I found feminism and did a lot of personal work and (I thought) resolved them. Then cancer hit and a lot of that work completely undid itself. Suddenly I was standing in front of the mirror saying shit to myself that I hadn’t said for a decade. That was weird.

But by 2019 my body and I had arrived at a sort of uneasy truce, held together by 1) it not having cancer and 2) me practicing intuitive eating and engaging in regular movement that feels good to me.

And then I got a severe flu, went to urgent care, was not diagnosed with the severe bacterial infection I also coincidentally had, and ended up hospitalized for two days on a near-constant drip of IV antibiotics.

Continue reading “Speaking Gently to My Body”

Speaking Gently to My Body

My Zine, “The Girl Survives Cancer in This One,” is Now Available!

Banner for "The Girl Survives Cancer in This One." Visit bit.ly/GirlSurvives

As you may know, I’ve been writing a book of essays about my experience as a breast cancer survivor. Last month, I decided to publish a zine that collects some of the essays I’ve written so far, to put my writing out there and build some interest in my book.

It ended up being a very fun project (my first zine!) and although I didn’t end up with the old-school photo-copied look I originally planned on, it’s very pretty and the writing is very much the focus.

A photo of the inside of my zine.

It’s now available on Etsy in digital format for $4, and as a paperback for $8. You can even get the paperback signed! Who knows, maybe it’ll be worth something one day.

If you want to get updates on my book as it progresses, you should subscribe to my newsletter here.

I hope many of y’all buy it and read it, and don’t forget to leave a review on Etsy!

A photo of the cover of my zine.

My Zine, “The Girl Survives Cancer in This One,” is Now Available!

Building Blocks of Mental Distress: A Dimensional Assessment of Mental Illness

This is a cross-post from my professional blog, where the most updated version of this will be.

The field of mental healthcare has its roots in medicine. The earliest mental health professionals were doctors—psychiatrists. Like medicine, psychiatry and clinical psychology are based on the process of assessing patients’ symptoms, performing some sort of test if needed, assigning a diagnosis, and creating a treatment plan based on that diagnosis.

This is a very sensible approach for most medical issues. If I appear at my primary care doctor’s office complaining of persistent headaches, she shouldn’t just treat the headache by prescribing a painkiller. She should refer me to someone who can figure out what’s causing the headache, and then treat that condition, whether it’s extreme stress, a head injury, a bacterial infection, a brain tumor, or some other problem.

Even though we’ve been treating mental health issues this way for at least a century, it’s not the best way to treat them. And many psychiatrists, therapists, and researchers are starting to realize that.

That’s why we’re finally starting to see approaches to assessment and treatment of mental illness that move away from the much-argued-about diagnoses in the DSM, and sometimes away from the concept of mental illness altogether. Psychologists such as David Barlow, Rochelle Frank, and Joan Davidson have been working on so-called transdiagnostic approaches[1]; the newest edition of the DSM includes a chapter about a proposed new way to diagnose personality disorders that’s based on specific personality traits rather than broad, stigmatized labels[2].

I’m looking forward to the day when the field as a whole has shifted to these types of approaches entirely. For now, I needed a tool I can use with clients to help them (and myself) understand what they’re dealing with and access helpful resources and support. So I created my own informal dimensional assessment.

Continue reading “Building Blocks of Mental Distress: A Dimensional Assessment of Mental Illness”

Building Blocks of Mental Distress: A Dimensional Assessment of Mental Illness

Stuff I Read That You Might Like, Vol. 1

An e-reader with a cup of coffee, a notebook, a pen, and a pair of reading glasses.
Photo by Aliis Sinisalu on Unsplash

For a long time I’ve used Tumblr primarily to share quotes from my favorite articles that I read online (and sometimes books, too). Since I’m no longer using Tumblr due to their atrocious, sex-negative decision about adult content, I haven’t been able to find a better way to do this. Most so-called Tumblr “replacements” are pretty barebones and/or nonfunctional.

So, clunky as it is, I’ll be doing it here! Every so often I’ll post some quotes and links to stuff you might like.

Starting off with a very topical one:

Tumblr made sex a community experience.

—Vex Ashley, “Porn on Tumblr — a eulogy / love letter

Now that the full scope of this administration*’s political vandalism and base criminality is largely being copped to in broad daylight in various federal courthouses, a good chunk of the elite political press is moving into the Hoocoodanode? stage of political journalism. This is best exemplified byThursday’s New York Times podcast, the headline of which—“The Rise of Right-Wing Extremism, and How We Missed It”—got dragged like Hector’s corpse all over the electric Twitter machine until someone at the Times sharpened up and changed the last half of it to “…and How Law Enforcement Ignored It,” which is a little better, but not much.

To take the simplest argument first, “we,” of course, did no such thing, unless “we” is a very limited—and very white—plural pronoun. The violence on the right certainly made itself obvious in Oklahoma City, and at the Atlanta Olympics, and at various gay bars and women’s health clinics, and in Barrett Slepian’s kitchen, and in the hills of North Carolina, where Eric Rudolph stayed on the lam for five years and in which he had stashed 250 pounds of explosives for future escapades.

—Charles P. Piece, “‘We’ Did Not Miss the Rise of Right-Wing Extremism. You Did.

Inspired by online recipe sites, he’d sit down to dinner and then let me know what rating I earned. “If I give you five out of five, you’ll quit,” he joked. And I laughed because when I was in my 20s, I believed that you were supposed to laugh when someone hurt your feelings. I thought you were constantly supposed to be trying harder.

—Lyz Lenz, “Now That I’m Divorced, I’m Never Cooking for a Man Again

“As you become more acclimated to the cold, your body becomes more effective at delivering warm blood to the extremities, your core temperature goes up, and all that contributes to being more resistant to the cold,” Leonard told me.

That means the only cure for hating winter, unfortunately, is just more winter.

—Olga Kazan, “Why So Many People Hate Winter” (ugh.)

Mattis saw it up close. He bore it as long as he could, in hopes of mitigating the damage. But when Trump broke America’s promise to the Syrian Kurds, he stained Mattis’s honor, too. That, apparently, Mattis could not accept. He leaves and takes his honor with him. And now the question for Congress is: The Klaxon is sounding. The system is failing. What will you do?

—David Frum, “No More Excuses

It’s called Star Wars. Not Star Trek, not Star Peace, not Star Friends, not even Star Tales. This gargantuan fictional universe is labeled with a title that guarantees the ability to travel space… and near-constant warfare.

We can debate the relative okay-ness of this focus from a moral standpoint, sure. But in reality, I think that Star Wars is accidentally teaching us the greatest lesson of all: It’s depicting what a universe looks like when you dedicate all of your research and technological advancements to war and destruction, and unwittingly showing us what an incredibly dark place that universe is. Because the Star Wars universe is a fun fictional playground for sure, a great place to build weird and wonderful stories… but it’s not a good place. Not by a longshot.

—Emily Asher-Perrin, “Star Wars is Really a Cautionary Tale About Devoting All Technological Advancements to Death

It’s no longer socially acceptable to believe that women are somehow less than especially not during a time when feminism is wielding so much cultural power. But arguing that women are just naturally better at caretaking or domestic work has become a clever way to shirk living up to progressive values while claiming you are simply complimenting women on their stellar ironing skills.

One way to combat this line of thinking is to highlight how fully capable men are in the private sphere. It is true that American culture relishes in portraying men as dolts when it comes to parenting and cleaning, and it’s an unfair stereotype.

But for women to make real progress in and out of their homes, men must give something up: the backwards dream of holding onto their feminist bona fides while seeking out female partners willing to limit their own aspirations to the home.

—Jessica Valenti, “The ‘Woke’ Men Who Still Want Housewives

So yes, forced birthers and [Status Quo Warriors], if you’re going to play it like that, I am OK with the idea of a world into which you, personally, were never born. I am equally as OK with the idea of a world where I don’t exist, either. Neither you nor I personally matters that much in a universe so vast and a sea of human experiences so rich. You and I both are accidents in our existence, possibly unhappy ones.

I would’ve rather your mother not have been forced to carry a pregnancy she didn’t want to term. I would’ve rather your father had approached your mother respectfully in an appropriate setting, or not at all. I dare to love your mother as a fellow human being more than you do and to dream of a better world for people like her. It’s rank misogyny and not very humanist at all to think otherwise.

—Heina Dadabhoy, “Why I Don’t Care If You Wouldn’t Have Existed

It is maddening to watch adult men respond to revelations of endemic sexual harassment in the workplace by instituting a series of ludicrous personal codes, rather than by learning the relatively straightforward lesson on offer: Don’t sexually assault or harass anyone.

At best, these “rules” are reflective of employers’ woefully incomplete approach to sexual harassment. Employers have long done the absolute minimum to comply with the law, relying on trite videos focused on what you can and cannot say or do in the workplace (“don’t give back rubs” or “don’t offer promotions in exchange for sex”) and sexual harassment policies designed primarily to protect them from lawsuits. The sweeping scale of the Me Too movement makes it clear that no mere set of rules is sufficient to prevent workplace harassment, especially when those rules fail to speak to all of the various power imbalances that make the critical distinctions between genuinely consensual workplace romances and harassment.

—Tahir Duckett, “Avoiding Women At Work Is A Childish, Cowardly Response To #MeToo

When you are terribly afraid of being held responsible for the emotional well-being of others, it feels very mature and responsible to decide that you should “work on yourself.” It becomes both a way of retroactively absolving yourself (wow, can you believe all of the ways my issues manifested before I decided to work on them) and a rather elegant little trick to exonerate ongoing bad behavior (dang, those pesky issues again! I guess I must keep working on them). This is especially true for those too-clever-by-half motherfuckers who think that nobly warning someone in advance they “are working on their issues” mitigates any way in which they might disappoint or harm. And even with the best of intentions, it obviates the fact that relationships themselves are a process of being made ready, not something you come to static and fully formed.

[…] We need each other desperately, in ways none of us can be ready for.

—Brandy Jensen, “Ask A Fuck-Up: I’m still in therapy. Should I be dating?


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Stuff I Read That You Might Like, Vol. 1

Do Not Let Tumblr Frame Their Adult Content Ban as “Positive”

Tumblr is banning all “adult” content. Besides being a terrible business move, this is also one of the most disingenuous decisions I’ve ever seen from an internet company. And I’ve seen a lot.

Yes, the change is happening because the Tumblr app was temporarily removed from the iOS App Store due to child pornography. (The collaborative database Tumblr shares with other companies that’s supposed to filter out probable child porn apparently let some posts through that shouldn’t have been.) Rather than justifying the new policy, though, that just adds insult to injury. In my (very heavily-regulated) field, we have a term for this: CYA.

The disingenuity of Tumblr’s statement starts very early on, when they describe their position on posting child porn: “Let’s first be unequivocal about something that should not be confused with today’s policy change: posting anything that is harmful to minors, including child pornography, is abhorrent and has no place in our community.”

That’s nice, but if you don’t want this policy change to be “confused” with banning child pornography, you might try not instituting it in response to getting criticized for allowing child pornography.

They continue:

We spent considerable time weighing the pros and cons of expression in the community that includes adult content. In doing so, it became clear that without this content we have the opportunity to create a place where more people feel comfortable expressing themselves.

Which people? Who feels “uncomfortable” posting on a site that also allows adult content, and who will be made to feel uncomfortable—or even unsafe—now that this change is happening?

There are no shortage of sites on the internet that feature adult content. We will leave it to them and focus our efforts on creating the most welcoming environment possible for our community.

Are there? I mean, yes, there’s YouPorn and Fetlife and whatnot. These are very different types of websites than Tumblr. While I’m sure sex-friendly alternatives to Tumblr exist, I honestly can’t name any off the top of my head. Given how entrenched I am in internet culture, that suggests that there may well be a “shortage.”

Another thing, filtering this type of content versus say, a political protest with nudity or the statue of David, is not simple at scale. We’re relying on automated tools to identify adult content and humans to help train and keep our systems in check. We know there will be mistakes, but we’ve done our best to create and enforce a policy that acknowledges the breadth of expression we see in the community.

This is perhaps the most honest part of this entire statement, as it at least admits that there’s going to be collateral damage. Except realistically, it won’t be statues of David or even “political protests with nudity.” It will be queer, trans, and non-white individuals sharing their experiences and identities—the exact sorts of people who use Tumblr to “speak freely about topics like art, sex positivity, your relationships, your sexuality, and your personal journey,” as the statement admits.

What this means in practice is that, like Facebook and Instagram, Tumblr’s “automated tools” (along with the biased humans supposed to keep them “in check”) are going to ban photos of breastfeeding mothers, topless photos of trans men, references to menstrual blood, and the like. Many Tumblr users are already testing this, with hilarious but also depressing results.

And on the topic of topless photos. In their definition of “adult content,” the Tumblr team writes: “Adult content primarily includes photos, videos, or GIFs that show real-life human genitals or female-presenting nipples, and any content—including photos, videos, GIFs and illustrations—that depicts sex acts.”

What the fuck are “female-presenting nipples” and why are they less appropriate than “male-presenting nipples”? (What happens with nipples that are evidently nonbinary?)

The definition continues:

Examples of exceptions that are still permitted are exposed female-presenting nipples in connection with breastfeeding, birth or after-birth moments, and health-related situations, such as post-mastectomy or gender confirmation surgery.

Why are “female-presenting nipples” acceptable when it comes to birth or breastfeeding, but not when it comes to just existing on their own, without cancer or surgery?

Once my mastectomy scars heal, they’ll be barely visible, and once I buy fake adhesive nipples, my breasts are going to look extremely realistic (not to mention totally bangin’, but that’s a separate conversation). Say I want to post a photo to reassure other survivors that they are able to get these fantastic results too. Why wouldn’t my photo get flagged and removed?

The difference is pretty obvious. It’s not really about the gender of the nipples’ owners or whether or not they’re laying in a hospital bed. It’s simply this: tits are okay as long as they’re not there to titillate.

To that end, nipples that aren’t “female-presenting” are fine, because the assumption is that they’re not pornographic to anyone—nobody gets off on them. (That’s obviously false.)

What is all this for? What is Tumblr trying to change about the way their platform is used?

One word that keeps coming up in their communications about the change is “positive.” “A better, more positive Tumblr.” “We won’t always get this right, especially in the beginning, but we are determined to make your experience a positive one.”

The word “positive” is doing some interesting work in this statement and I want to unpack that a bit. In what way is a community without (consensual, legal) adult content a more “positive” (or more “welcoming”) community? What is “negative” about the presence of consensual, legal adult content? What is negative about “female-presenting” nipples as opposed to other kinds? Why is a breast uncovered for feeding a baby more “positive” than a breast that’s just hanging out?

The staff writes in their update to the community guidelines that “we do not judge anyone for their desire to post, engage with, or view this stuff,” yet they also say that a space without “this stuff” is “more positive.” What is that if not judgment?

There’s only one neutral word to accurately describe the new Tumblr, and that’s “more child-friendly.” The only reason for removing adult content is to make it (more) possible for children to exist safely in a space. But Tumblr already had a Safe Mode for that reason—a feature that is now being discontinued because it is no longer needed.

“More child-friendly” is not “more positive.” It’s just more child-friendly. And unfortunately, even that can be a loaded term. Many websites, most notably YouTube, have been criticized for removing LGBTQ content in the name of the children, even when the same content would be deemed appropriate if it featured straight, cisgender people.

(As an example, just think about how many people screech “BUT THE CHILDREN” if a same-sex couple cuddles or shares a quick kiss in front of kids. Yet these kids see similar forms of affection between their straight parents all the time. [I mean, judging by how shitty some of these people are at relationships, maybe not.])

Competing access needs are a thing. Yes, a space where people can freely post pornographic content will not be as open to minors, even if there is a Safe Mode. However, children as a group do not seem to be suffering right now for lack of websites to use. But queer and trans people, and sex workers (many of whom rely on Tumblr to make a living), absolutely are. And these are the types of people who have made Tumblr what it is. For example, many people I know used to enthusiastically follow Cliff Pervocracy’s Tumblr, an invaluable resource on consent and sex-positivity. As Cliff pointed out on Twitter, his Tumblr account was already banned even before this change was made.

I get freaking out because you’ve messed up something as serious as banning child pornography from your website. I really do. And I’d be more understanding of this change if the Tumblr team were at least upfront about that.

Instead, they literally come right out and state that a Tumblr without consensual adult content is a “more positive” Tumblr. They conflate consensual adult content with child pornography, which is as offensive as conflating consensual BDSM with violence and consensual sex work with trafficking.

And speaking of conflating sex work with trafficking: this is bigger than Tumblr and it’s bigger than getting kicked out of the iOS App Store. It’s a direct consequence of SESTA/FOSTA, and will probably get worse.

Our society’s irrational and extreme fear of sex is killing people and ruining lives.

But back to Tumblr: unless they reverse this change (unlikely), I’ll be ending my presence there. Whether or not you have a Tumblr account and do the same, here’s my charge to you—do not let anyone get away with framing these types of changes as “positive” or “friendlier” or even “safer.” At best, these changes make spaces more accessible to minors. At worst, they further stigmatize marginalized people and cut them off from community and financial support.

If that’s what we’re doing, let’s at least be honest about it.

Do Not Let Tumblr Frame Their Adult Content Ban as “Positive”

How Big is Your Hard Drive?

Close-up of a hard drive.
This is relevant, I swear.

This is a cross-post from my professional blog.

Some friends and I were talking recently about the concept of “emotionally unavailable” people. Most of us have had a friend—perhaps ourselves—who has tried to date someone who seemed into them, but just wasn’t quite present. Sometimes this type of partner is upfront about their ability to commit and/or be there. Sometimes, they aren’t, and their behavior seems confusing and contradictory. These pseudo-relationships can drag on for years until we are finally able to move on, understanding that however much the person enjoys our presence, they are not interested in making things more committed or structured than they currently are.

If I knew what to do in these situations I’d probably be retiring a millionaire, but I do have an analogy that might be helpful. I thought of it on the spot to give my friend some advice. (If you’ve ever been my client, you know how much I love a good geeky analogy.)

Computers come with different hard drive capacities. If yours doesn’t have enough space for you, you can maybe buy and install a new one—but for the moment, you’re stuck with the one your computer came with. Maybe you can’t afford a new one right now.

Different hard drives also have different things stored on them, and these things take up different amounts of space. I know people whose hard drives pretty much just contain the system files, maybe a few extra apps. These people use their computers mainly to get online. Maybe computers aren’t very important to them and they don’t use them much at all.

Some people have a lot to store—photos, music, videos, complex projects they’re working on. These folks are buying hard drives in capacities I didn’t even know existed. (This year, the world’s largest solid state drive hit 100 terabytes. What are they storing on that hard drive???)

Don’t think of the hard drive as your brain. Those analogies are really reductive, and usually insulting to us humans. The hard drive is a symbol, and it represents something I call your capacity as a person. That encompasses a lot of things—time, energy, physical and mental ability, willpower (which isn’t really a thing, but that’s another article; it’s useful here as a concept), tolerance for uncertainty or negative emotion, and much more. For instance, not everyone has the capacity to be a therapist. Being a therapist requires having a lot of space to hold other people’s pain. Not everyone has enough space for that. Unfortunately, some therapists end up without enough space to hold their loved ones’ pain, or even their own.

Say I have a 1 TB hard drive that’s full of music and photos. Maybe there’s 300 GB left over. Then a friend asks, “Could I put some of my videos on your hard drive? I need somewhere to store them for a while.” I say sure, but then they come over with their external drive and I see that they have an entire terabyte of videos. That’s not going to fit on my hard drive. I could probably store some of their videos, and that might still be helpful for them. But maybe they really needed to store the entire drive’s worth. I don’t have the capacity.

This kind of thing happens in friendships and relationships all the time. You might have a good amount of your own shit to deal with, but that doesn’t mean you can’t listen to your friends vent about their own problems from time to time, or give them advice about a work situation, or treat them to a nice dinner while they’re going through a breakup.

You might not be able to be a friend’s primary source of support as they navigate a serious illness, however. First of all, the time factor would be prohibitive—you may not be able to drive them to all of their medical appointments, be at their house enough to care for them when they can’t care for themselves, and so on. The stress of being a full-time caregiver would be way too much. Holding their anguish as they face the possibility of death or disability is also, well, a lot. Your friend needs more people on their team.

Some people are carrying a lot of trauma, hardship, or personal responsibilities with them already. No matter how large their hard drives happen to be, there may not be space there for you.

Not only that, but some people have pretty small hard drives to begin with. I’ve known many people who just don’t seem to have a lot of space for others in their lives. They don’t tolerate much emotional turbulence when it comes to other people. They may be interested in sex, casual friendship, or even romance, but they don’t have the capacity to build interdependent, long-lasting relationships with others—at least not until they do some work on themselves, and get some bigger hard drives. Some people want to do that work; others are perfectly content as they are.

Here’s where this analogy really breaks down—buying a new hard drive is a million times easier than increasing your capacity for holding other people. And while you can buy a larger hard drive for your friend whose computer you’re always wanting to store your videos on for some reason (this is weird), you cannot increase others’ capacity for them. They have to choose to do it for themselves, and they may not want to. Or it may take them a long time, or they may not be able to do it at all.

If you are hoping for a deeper relationship with someone whose hard drive seems to be too small—or who has way too much data on it already—you have to ask yourself whether or not it’s likely that this person is going to have more space for you anytime soon, and whether or not they want that space to be yours.


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How Big is Your Hard Drive?

Who Decides When Pain is “Intolerable”?

Imagine that, like me, you have a serious, incurable medical condition. If left untreated, this condition could kill you or at least have a devastating, permanent effect on your ability to work, enjoy yourself, and function independently. There is a treatment available, but it’s not totally guaranteed to work. It will probably at least help, but it doesn’t actually cure the condition. It also causes serious side effects and carries high risks of long-term problems. You even might end up needing further treatment to manage the effects of the first treatment.

What do you do?

Here’s another complication—the risky, expensive treatment makes a lot of money for the pharmaceutical companies who produce it. That leads some people to claim that the treatment is a sham and you shouldn’t accept it—instead, you should “learn to live with” the consequences. But your doctors say that despite the risks, this is your best chance of living a full, long life.

Now what do you do?

Well, if the medical condition is cancer and the treatment is chemotherapy, then most people, including me, take their chances with the treatment. Some go into remission. Some don’t, or their disease returns. Many people with stage 4 (or metastatic) cancer that has spread throughout their body are given chemo indefinitely as a way to try to manage and control the cancer for as long as possible.

But what if the condition is severe and incurable chronic pain, and the treatment is opiates?

It’s not a perfect analogy. It’s not supposed to be. But the reason most people recoil instantly at that comparison is because most people don’t see severe chronic pain as an illness in the same way that cancer is. Sure, everyone needs an ibuprofen at some point in their lives, and sometimes if you have a serious surgery you may need Percocet or codeine, but to most people, pain is not in and of itself a medical condition that merits treatment.

People are rightly suspicious of opiates because ever since the days of morphine, pharmaceutical companies have mislabeled opiate medications and mislead the public (and even doctors) about their addictive properties. (That’s one point at which the analogy with cancer and chemo breaks down—as far as I know, we’ve always known that chemo literally destroys the cells in your body.) Doctors used to prescribe opiates without warning patients about the potential for addiction and the importance of taking appropriate doses, tapering down when needed, and complementing the opiates with other, non-addictive methods of pain relief.

However, none of this negates these facts: 1) many people suffer from severe and incurable chronic pain, and 2) opiates are the only drugs that allow some of these patients to achieve anything resembling a livable situation.

Now that politicians are once again yelling at each other about “fixing” the “opioid epidemic,” I’m seeing a lot of pundits and public figures carefully dancing around the inconvenient and messy reality of pain. “How do we get these people to stop abusing opiates?” they moan. “Maybe if we ban doctors from prescribing them.”

They’ll go on to qualify. “We’re not saying nobody should ever get them. But it should be harder to get them, and it should only be for people who really need it.”

You know what that reminds me of? “We’re not saying nobody should be able to get an abortion. But there should be a waiting period, and you should have to hear the baby’s heartbeat, and any doctor performing them should also have admitting privileges at a nearby hospital in case something goes wrong, and definitely not after 20 weeks, and—“

In both cases, the “guidelines” and “restrictions” and “regulations” may seem like they’re there to prevent “abuses of the system” or people getting medical care they don’t really want/will regret later. But really, the goal is pretty clear—sharply reduce the frequency with which this type of medical care is being provided. [1]

And the reason that’s the goal isn’t just because they believe that this type of medical care is harmful to patients. It’s also because they believe that it’s ultimately immoral and harmful to society.

If that wasn’t already painfully (heh) obvious from talking to doctors and politicians about pain management, it’s also obvious when you look at the type of research being done. In a Vox article about the issue, German Lopez cites a study about what happens when doctors are informed when their patients overdose on opiates they prescribed:

The results: Clinicians who got the letters prescribed nearly 10 percent fewer opioids than those who did not receive a letter. The letter-receiving clinicians were also less likely to start patients on opioids and less likely to give patients higher doses of opioids. [2]

This is being presented as a successful outcome. Why? How do we know how exactly these doctors decided whom they were going to deny opiates to? What if some, or most, of the patients who made up that 10% statistic were patients who really needed these medications? How many of those patients might go on to overdose on street drugs that they sought out because of unmanaged pain?

And that’s how we get to opinions like these, from a Vox article by Sarah Kliff, who cites the article above:

But there is one quote in German’s piece that stands out to me the most, from drug policy expert Keith Humphreys: “Something needs to be worked through the culture as well about how pain is part of life. If you’re in excruciating pain, it sucks. And I’ve had pain conditions myself. But not all pain is intolerable or needs to be pushed down to zero with an opioid.”

This, I think, is the hardest part of backing away from opioids: admitting that medicine doesn’t have a perfect cure for pain — that for some patients, zero pain isn’t possible. [3]

Here’s the problem, though. “Not all pain is intolerable” means acknowledging the fact that some pain is intolerable, and any way you slice it, you have people other than the patient determining if their pain is tolerable or not. And not only that, but this decision-maker is essentially serving as a gatekeeper to effective pain-relieving medication, placing them in opposition to the patient, who wants access to that medication.

There is absolutely no way for this not to become gaslighting, and no way for it not to become yet another stage on which our cultural biases play their well-worn roles. It’s a known fact that African Americans are considered less sensitive to pain, while women and Jewish people are considered weak and prone to complaining. (Somehow, despite the opposite stereotypes, all of these groups are similarly denied pain care.) These stereotypes appear in current medical textbooks. [4]

This page is from a 2014 nursing textbook titled Nursing: A Concept-Based Approach to Learning. After this photo went viral on social media in 2017, the publisher, Pearson, apologized and released an updated edition of the textbook with this section removed.

The other problem with “not all pain is intolerable” is that, while pain usually has physiological causes, its perception is subjective. Feelings of pain are processed in the brain, so all pain, by definition, is “all in your head.” That fact is often used to gaslight people, but if anything it should be the other way around. That pain is subjective means there’s no way to know if someone else’s pain is “that bad.” Every method that’s been created to try to objectively rate someone else’s pain is a dismal failure, because you simply can’t.

Opiates have high risks, especially when mismanaged. But lots of important medical treatments have high risks. Besides its serious short-term side effects, chemo has a high likelihood of causing at least a few of the following permanent effects: neuropathy of the hands and feet, cognitive impairment, bone and joint pain, elevated risk for various cancers, heart disease/failure, lung damage, infertility, hearing loss, and osteoporosis.

“But wait!” you may say. “Cancer kills, but chronic pain doesn’t!” You got me there. Except not really, because first of all, not everyone agrees that a lifetime of excruciating pain is better than death. For instance, I don’t. Second, severe and untreated chronic pain absolutely does kill. It can increase the risk of suicide and actual opiate abuse and overdose, as well as alcoholism and complications thereof. People who become sedentary due to pain have a higher risk of dying of heart disease, diabetes, and literally any other disease for which being sedentary puts you at risk. People with untreated pain may be unable to work, and their ambiguous medical status can make them ineligible for Social Security. Poverty is itself a risk factor for just about everything.

Which brings me back to my opening analogy. Who decided that the risks of living with severe pain are preferable to the risks of taking opiates? Why do they get to make that decision for patients? What the fuck happened to informed consent?

Opiate addiction is obviously a very serious health issue, but it’s not untreatable. Most people with addiction recover. Many of these other potential risks I described, both of chemo and of untreated chronic pain, are permanent.

I have always supported access to effective pain medication, including before my surgery, but before then I would’ve said that I’d personally rather deal with pain than take opiates for longer than a day or two and risk addiction. But the combination of gaslighting and physical suffering I experienced changed my mind. I have been in every way diminished by that experience, and it didn’t even last that long compared to other people. [5]

No, I didn’t need that pain “pushed down to zero,” and that quote is an unfair strawman. I needed that pain managed. I needed to not want to kill myself so I could focus on recovery. Ibuprofen didn’t do that. Tylenol didn’t do that. Muscle relaxers didn’t do that. Percocet didn’t even do it, because the hospital staff had allowed my pain to spiral out of control while they hemmed and hawed and condescended and argued with me about it.

At that point I was on my own. That I had resources of strength that enabled me to survive that without resorting to illegal drug use or having a complete mental breakdown diminishes neither the severity nor the ultimate Sisyphean pointlessness of what I went through.

Incidentally, I’m not even the type of patient that this conversation was supposed to be about. I’m not a chronic pain patient. I had a serious and complicated surgery, but one that has a predictable and relatively short-term recovery process. When experts talk about the risks of opioid prescriptions, this isn’t the situation they’re usually talking about. Yet, as my social worker later suggested, I had gotten caught in the web of Ohio’s new “opioid guidelines.” The pendulum has swung in the other direction, and it knocked me on my ass on its way there.

So, I fully admit that I can’t be impartial about this issue. But because I can’t be impartial about it, I’m well-positioned to report on its devastating outcomes. I dissociate when I have to return to that hospital. I break down bawling in doctors’ offices when they ask me about my experience. I’ve lost almost all trust in the medical system that put my cancer into remission and saved my life, because in so doing it gaslit and traumatized me in a way that, unlike the cancer itself, was one hundred percent avoidable.

And I am so, so lucky compared to others. My pain was temporary.

I see a lot of pundits talking about how to reduce opioid prescriptions and “get people off” opioids. These are the wrong questions to be asking. Here are some better ones:

  • Is pain a valid medical issue, or is it not?
  • Who is the best authority on a patient’s pain severity—their doctor, a state government, or that patient?
  • What are the long-term risks and costs of unmanaged chronic pain?
    Which of the “alternative approaches” to pain management being suggested to patients are based on scientific evidence?
  • On average, medical school students receive 11 total hours of training on pain out of thousands of total hours of education. Are we going to do anything about that?
  • In a culture with sayings like “No pain, no gain” and “What doesn’t kill you makes you stronger,” are we prepared to acknowledge that pain carries no intrinsic moral benefit and that people who want to reduce their suffering should be able to do so?
  • “Informed consent” means that patients are informed of potential risks, benefits, and alternatives for each treatment, and then allowed to decide for themselves which treatment to choose. Does this apply to chronic pain?
  • The majority of substance abuse treatment in this country still utilizes outdated, unscientific methods that rely on religion and moralizing rather than sound evidence. Are we going to do anything about that or nah?
  • Every single client I’ve ever worked with who was or had been addicted to opiates had one or both of the following untreated issues in their history: 1) repeated psychological trauma, usually sexual assault/abuse, or 2) years of disabling physical pain. What are we doing about that? Specifically, how fucking dare any member of Congress vote for any opioid-related legislation while confirming a man accused of rape by multiple credible witnesses to the Supreme Court?

Honestly, until I see some real answers to these questions, I don’t really care about reducing opioid prescriptions or forcing anybody off of them.


[1] https://thehill.com/policy/healthcare/380559-anti-abortion-lawmakers-lay-groundwork-for-roe-challenge

[2] https://www.vox.com/science-and-health/2018/9/25/17327976/opioid-epidemic-painkiller-prescriptions

[3] https://www.vox.com/policy-and-politics/2018/9/28/17915696/voxcare-opioid-epidemic-package

[4] https://www.insidehighered.com/news/2017/10/23/nursing-textbook-pulled-over-stereotypes

[5] The full story of my surgery and its aftermath is something I’ve addressed elsewhere on social media, and will be discussed in the book I’m working on. But the nutshell version is: I had a double mastectomy with reconstruction and was afterwards denied almost all but the weakest prescription pain medication, and gaslit and condescended to when I asked to be given proper pain management.


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Who Decides When Pain is “Intolerable”?

Intuitive Eating Made Me Miss My Flight

(But, in the words of the great Rebecca Bunch, the situation’s a lot more nuanced than that.)

Rebecca Bunch from Crazy Ex-Girlfriend

Last night I was supposed to be on a flight to DC. I arrived at the airport straight from work with some time to spare, checked my luggage, went through security, bought a snack, and arrived at the gate to find that the flight had been delayed by two hours. It was 7 PM. My usual dinner time. I ate some of my almonds but found my hunger worsening. With the delay I would not arrive in DC until about 11 PM, plus a half-hour ride from the airport, so it would be nearly midnight by the time I could finally have a hot, nutritionally complete meal—my first since lunch at noon. What to do?

Lately I’ve been working with a dietician[1] on intuitive eating, a radical (but not new) approach to food in which you learn to pay attention to your body’s hunger cues and eat things that feel good to you. No numbers are involved in this process at any point. It’s not a weight-loss program, or even a “health” program, really. It’s more of a “rebuild a healthy relationship with food and be more mindful” program.

Most people, even those who have a relatively healthy body image and few issues around food, have taught themselves to ignore bodily cues like hunger, satiety, and energy. That’s because bodies are inconvenient and our society demands that we run on its schedule, not on our bodies’ schedules. If lunch is at noon then you eat at noon. If you have a lot of work to do and don’t have time for eating, you keep working until you can stop. If we’re eating now then you eat now even if you’re not hungry. If dinner is meatloaf and broccoli then you clean your plate before you can leave the table because of [insert racist and classist cliche here]. If salads leave you feeling weak and tired but salads are clean and healthy and you need to eat clean and healthy, then you eat salads and feel weak and tired and tell yourself it’s because of something else. If the flight is at 7 PM and there’s no time for dinner beforehand, then you grab a snack and head to the gate, and if the flight is delayed and there’s no one with you to text you updates, then you stay at the gate in case the flight leaves suddenly and you worry about your worsening hunger later.

Recently finished chemo? Recently had a double mastectomy? Recently started hormone suppression meds that put you into early menopause, causing hot flashes, fatigue, weakness, and confusion, especially if you don’t eat properly? Don’t worry about it! Wait at the gate.

Needless to say, I didn’t do that. I went to a pizza place not far from the gate, ordered myself a small pizza with olive oil, bacon, onions, and mushrooms, listened for any flight announcements, did not hear any flight announcements, refreshed the flight info on Google, and missed the flight anyway.

“Should’ve stayed at the gate,” the gate agent said when I appeared half an hour before the flight’s rescheduled departure and inquired what the fuck.

But I was exactly where I needed to be—taking care of my body so that it takes care of ME on my trip.

Now it’s the morning after, and I’m on my rebooked flight to DC, somewhat frazzled but nevertheless feeling energized enough to enjoy my weekend. Because last night when I started to feel really hungry, I had a complete meal with carbs, fat, protein, and fiber, along with hot tea and later water.

Bodies are inconvenient. I’ve tried the thing where you replace your meals with “healthy snacks” because you can’t make time to eat meals. It doesn’t work. I’ve tried the thing where you grab greasy fast food and bring it on the plane with you because you don’t have time for anything else. It doesn’t work. I’ve tried ignoring the problem. It doesn’t work.

What works is paying attention to my body’s physical sensations and responding to them with a combination of carbs, fat, protein, fiber, water, rest, physical activity, and sleep.

In fact, that’s probably the only thing that ever would’ve worked. But until I got so sick that I HAD to stop and pay attention to it, I ignored it like almost everyone else does.

(No, ignoring my hunger did not cause my cancer, but having cancer caused me to stop ignoring my hunger.)

When you start noticing your body’s cues and responding to them appropriately, you may also start missing flights. Or turning down opportunities, or no longer eating some foods you thought you liked but turned out to actually make you feel bad, or being late to things because you realized you needed to eat first but you weren’t hungry early enough to eat early enough to not be late. You may decide that you can’t be vegan after all, or that you don’t need to eat meat after all. You may notice that you don’t get hungry at 7 AM, 12 PM, and 6 PM. You may get hungry at totally different times. You may need to adjust your work schedule to accommodate this.

You may find a way to avoid many of these potential problems by being strategic about bringing snacks with you or taking breaks from things. But sometimes you’ll forget, or it won’t be enough.

You may also find yourself feeling better, physically and mentally. You may stop sending yourself on guilt-trips over food. You may realize that stopping at Dairy Queen for an ice cream cone after work is actually a great way to boost your mood and make sure you don’t get hungry until you’ve had time to make dinner.

You may even find yourself noticing other types of bodily cues more, too—for instance, that the party is loud and you need a break from the noise, and if you take a break now, you won’t be overwhelmed and will be able to return and stay for the rest of the party and enjoy yourself. Or that these shoes are so uncomfortable that it actually impacts your mood and productivity, so wearing them just isn’t worth it anymore. Or that you always feel vaguely uncomfortable and on edge around this particular person and maybe it’s time to try to figure out why.

Yeah, it’s inconvenient. It makes me feel over-sensitive, fragile, high-maintenance, and a lot of other things we often label women with. It’s difficult that at a moment when I most need to get past my preoccupation with my body’s weakness and vulnerability, the self-care I need the most seems to just highlight those things more and more.

But every time I make the decision to honor my body’s cues rather than ignore them, I can feel that I’ve taken another small step towards well-being. Towards working as a team with my body rather than fighting it every step of the way. Towards feeling at home in myself again.

A missed flight starts to seem like a small price to pay.


[1] If you live in Ohio, you may be able to work with my dietician! Find her here: https://www.kristenmurrayrd.com/

More info about intuitive eating here: http://www.intuitiveeating.org/


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Intuitive Eating Made Me Miss My Flight

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