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
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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

“I was such an asshole back then”

If you are a woman or nonbinary person who dates men, you’ve probably dated a man who, when talking about his past relationships, admitted to you that he “used to be such an asshole.”

Sometimes this is accompanied by a story, told shamefacedly, about how he was manipulative or even coercive in his past relationships, or how he made his female partners do all of the emotional labor in the relationship (although he rarely uses this term). Sometimes untreated mental illness is part of the story, although of course, mental illness doesn’t make people assholes. How they choose to deal with it sometimes does.

Regardless of the particular details, many men in their 20s and 30s have these stories. In fact, I think this describes all of the men I dated except for the ones who were still assholes at the time I dated them.

I was talking about this with a friend recently and we started asking ourselves how exactly all of these men ceased to be assholes. How did they figure out that their behavior in their past relationships was wrong? Who told them?

The answer is as obvious as it is depressing: usually, the women in their lives told them, either during the course of the relationship or while breaking up with them. Often, the lesson didn’t sink in until the relationship was long over. I know a few men who learned to be better by reading blogs like Dr. NerdLove and Captain Awkward, but for the most part, it takes a person you love pushing you to do better.

It brought to mind all of the emotional labor I’ve done with men in my own life—telling them to stop comparing sexual assault to totally asinine things that have nothing to do with structural oppression; pointing out to them that every time I disagree with them, no matter how mildly, their tone almost instantly becomes irritated or even resentful; reminding them that “no” is a complete sentence and I don’t owe them further explanations; explaining to them that they can’t refuse to be in a committed relationship with me and then get upset at me for dating other people; telling them to stop pressuring me to have an orgasm like it’s a referendum on their sexual abilities; and so on.

How many of these men now tell their girlfriends with an embarrassed chuckle that they used to be “such an asshole”? How many of them give credit where credit is due?

In our conversation, my friend and I laughed mirthlessly as we realized that so many of our relationships with men involve us essentially preparing these men for future relationships with other women. And our own loving partners were prepared for their relationships with us by other women, too. It’s a cycle of emotional labor that’s rarely acknowledged.

If you are a man who dates women who’s ever found yourself reflecting on past relationships and realizing that you used to be an asshole, I want to invite you to ask yourself these questions:

1) How were you an asshole?
2) How did you learn that you were being an asshole?
3) How were you able to change that behavior?
4) Who helped you?
5) Have you thanked that person?

Obviously, if you don’t think that person wants to hear from you, then don’t do #5. But most of the time, your exes would probably be relieved to know their labor had an impact. I know I would be, when I think about all the thankless hours I spent calmly explaining things to my male partners only to have them respond with “ok, fine,” and then years later tell their new girlfriends what assholes they used to be.

I forget who said it now, but I saw a tweet once along the lines of “behind every ‘woke’ man is an exhausted feminist.” I believe it.

Whether or not you ever go back and thank the people who made you who you are today, I would love to see more men reframe the way they approach this conversation. Instead of “I was such an asshole back then, lol,” I would love to hear, “I used to be a really difficult person to be in relationship with, but my ex taught me a lot about how to be better and I’m in her debt for that.”

None of us become better people by accident. We have to be taught—by parents, by friends, my partners, by writers whose work we read. Yes, you make an effort too, and that matters. But someone helped you make that effort, and they deserve recognition.


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“I was such an asshole back then”

How to Avoid Giving Your Cancerous Friend a Panic Attack: An Introduction to the Psychology of Pain

Okay, maybe this is kind of turning into a Cancer Blog.

[Content note: medical stuff]

One of the first things my oncologist said to me at the beginning of this whole wild ride was, “Don’t Google.”

Wise words. For the most part, I haven’t. I’ve used some well-vetted websites (such as the American Cancer Society) to help myself prepare for things, but I’ve never intentionally sought out other types of medical information and narratives.

However, Google being how you access legit medical websites as well as blogs, things have nevertheless found their ways onto my screen that shouldn’t have. Some of this was probably unavoidable; some of it definitely wasn’t, especially when people sent me links or I clicked on them.

There’s a lot I didn’t understand about the psychological side of medicine until recently, but once I did, things started to make sense and I started to notice things I’d never noticed before.

For instance, well-trained doctors and nurses who are not characters in TV shows or moralizing children’s books never say “THIS WILL HURT A LOT.” Actually, they don’t even say, “This will hurt.” They say, “You will feel a pinch.” They say, “There might be a burning sensation at first, but it’ll go away in a few seconds.” They say, “You’ll feel a sting when I numb the area, but after that you won’t feel anything. If you do, tell me.” They say, “Some patients find this uncomfortable. If it’s too much for you, let me know and we’ll see what we can do.”

I started to notice that as much as possible, they stay away from words like “hurt,” “pain,” and anything vague or emotionally-charged.

Then I noticed how my doctor responded when I asked about pain management post-mastectomy. He said, “We use a multi-modal pain management protocol. You get four different medications, one of which is an opioid. We find that when patients return for their one week follow-up, the majority of them voluntarily return the opioids to us, saying that they only took a few of them or never needed them at all.”

Next I asked about chemo side effects. He said, “The main side effect patients experience nowadays is fatigue. Everything else is very well-controlled with medication, so if you’re still experiencing nausea or other side effects, let us know and we’ll add medications to control it or reduce the dose of the chemo. Even with fatigue, it varies. The best way to counteract it is exercise. Try to get yourself moving at least a little bit every day. Most of my patients continue to work during chemo, if not full-time. One of them even ran the Columbus Marathon during her treatment.”

Notice what’s going on?

Whenever the question of pain, discomfort, and side effects comes up, good medical providers do several things:

1) They are honest about what most patients can expect, but
2) They don’t focus on the negative aspects or use emotionally charged language to describe it
3) When most patients can expect a positive outcome, they emphasize that
4) When discussing pain or other side effects, they quickly shift focus to what THEY plan to do to address it.

This is very important, and that’s where the psychology of pain comes in. Research shows that expectations of pain play a huge role in our subjective experience of pain—expect something to hurt a lot, and it probably will; expect it to be tolerable, and it’ll hurt less. That doesn’t mean you’re going to magically feel no pain—we have nerves, after all—but there’s a degree of subjectivity to it and we’re learning that it’s a rather large degree.

Unfortunately, once you’ve become convinced for whatever reason that something is going to be very painful, it’s very difficult to un-convince yourself of that, because at that point your brain’s fear response has sort of taken over. That’s why it’s important to manage what information you receive beforehand so you don’t end up with an expectation of intolerable pain.

And that’s why my doctor told me not to google stuff.

Doctors don’t want patients freaking themselves out with graphic descriptions of painful procedures not just because they want to help you avoid panic attacks and unnecessary stress. It’s also because expecting severe pain can lead to experiencing severe pain. More pain means more pain medications, a greater risk of complications and addiction to those pain medications, a longer recovery time, and a generally all-around shitty experience.

A wonderful book I just read, What Patients Say, What Doctors Hear by Dr. Danielle Ofri, describes this phenomenon and cites research dating back decades. From a Washington Post review of the book:

We’ve known for decades that doctors who offer empathy, build trust and set expectations help their patients fare better. As far back as 1964, a study conducted with abdominal-surgery patients illustrated what Ofri calls the “demonstrable effect of the simple act of talking.” Before surgery, half of the patients were visited by an anesthetist who said pain afterward would be normal and would last a limited amount of time, and explained how patients could relax their muscles to lessen the pain. These patients needed half the pain medication of others who didn’t receive a pain talk. If we are an overmedicated nation, better communication would seem an easy and cheap way to relieve that burden — except that listening takes time, and doctors don’t usually have that.

If doctors don’t always have the time to talk to patients about pain in this calming, practical way, we now have the internet to step in and fill the gap. Sometimes it does this well, but often it does it very poorly.

We all know cognitively that you’re likely to find a disproportionate number of negative stories online because people who have a positive or neutral experience are less likely to take the time to describe it, whether that experience is with a restaurant, lawn care service, book, or medical procedure. We know this, but when you’re scared about your upcoming surgery and you stumble upon some first-person accounts, you’re not thinking of it that way and you can’t think of it that way. The fear response takes over.

Even if the experience being described is quite typical and probably fair to expect, it still does patients like me few favors to read those descriptions. First of all, subjective experiences of pain are, well, subjective. One person’s terrible pain could be my absolutely tolerable pain, and there’s no way to know it. Pretty much everyone has pain after surgery; that’s to be expected. But reading about it can still harm me by causing me to expect more pain than I would’ve otherwise had.

Different online sources also have different motivations. I’ve read a few blogs by cancer patients and found most of the accounts there to be pretty neutral and even-handed when it comes to describing cancer treatment. Yes, it sucks, but since these bloggers were documenting their journeys overall, they also described the parts that were okay, and the parts that were just boring, and even the parts that were interesting and better than they expected.

But as soon as you get into first-person narratives being published on websites like Buzzfeed and Slate and whatever, you’re going to see a much more skewed version of things because, as I’m furiously finding out, people love a graphic, miserable cancer narrative. People eat that shit up. Painful medical procedures, disgusting post-op symptoms, bizarre side effects, the works. It gets clicks. It infuriates me.

Even if those experiences are very much real, it doesn’t do someone like me any good to read it. Some patients justify it by claiming that it helps us be better “prepared”—I used to do this too—the fact is that it doesn’t make is better prepared. It makes us less prepared, because it makes us expect the worst and therefore ultimately have a worse experience.

So, when you come across these “raw” and “honest” cancer narratives and you feel the urge to send them to your friend with cancer to help “prepare” them or because you think they might find it validating, take a pause and ask yourself 1) who this is primarily being written for and 2) how exactly this will prepare your friend for what they’re about to face. Put yourself in their shoes. Imagine you’re going through treatment for a deadly illness, and you don’t know if the treatment will even work or how much damage it’ll do to you in the process. Would reading this material help you? If not, it won’t help me either.

What I do find helpful is neutral, matter-of-fact explanations of what I can expect. The best of these have come from my hospital itself, which makes tons of handouts available to patients. Here are some pages from the one they gave me about mastectomy and reconstruction surgery:

This slideshow requires JavaScript.

Websites like the American Cancer Society, the National Breast Cancer Foundation, and BreastCancer.org also do this well. When I do google, these are the websites I usually click on.

And in terms of speaking to people, two conversations have made a big difference in calming me down and setting more positive expectations for surgery. One was the appointment in which my doctor told me about how most of the opioid medications get returned within a week. The other was when my mom, who had a c-section twice, told me that post-surgery pain just felt like a very strong muscle ache, as if you’d worked out super hard the day before. That was very reassuring. I am no stranger to strong muscle aches.

In my social circles, we generally value sharing and listening to people’s personal experiences, and we emphasize that everyone’s experience is valid and important and so on. I agree with this, generally. But right now, as I’m going through cancer treatment, everyone’s personal experience is not important to me, and I shouldn’t read and give credence to something just because it’s someone’s personal experience. Doing so can not only give me panic attacks, but literally cause me to feel more pain.

So for the time being, I’m trying to stay away from negative and emotionally-charged accounts of cancer treatments, and my friends can help by not encouraging me to read them. If necessary, I’ll “prepare” myself by talking to my doctors. They have yet to make me regret it.


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How to Avoid Giving Your Cancerous Friend a Panic Attack: An Introduction to the Psychology of Pain

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

There’s Nothing “Unfair” About Al Franken’s Resignation

Personal note: I’ve been mostly absent from blogging because I have cancer. Read all about it here.

[Content note: sexual violence]

Before I begin, I’d like to state for the record: it is Okay to have sad/upset/complicated feelings about the allegations against Al Franken and his subsequent decision to step down. That’s not what this is about. In fact, when it comes to me, it is Okay to have any feelings you want about anything. That’s my promise to you.

However, when we step outside of the realm of feelings and into the territory of attributions, ethical claims, moral reasoning, and outward behavior, it’s no longer anything-goes. Even if feelings underlie it.

I particularly disagree with claims that the political consequences Al Franken is now facing are “unfair.” It think this suggests some very skewed ideas about what fairness means, and under what conditions we can be expected to be our best selves.

In general, fairness means treating people and situations equally or equitably. If we would call upon a Republican with multiple credible allegations of sexual assault to resign, we should do the same to an equivalent Democrat. It would be unfair to call upon Roy Moore to resign, but not Al Franken. (Yes, the allegations against them differ in some significant ways, and sometimes this is important, but I don’t find it particularly important here. Assaulting adults is just as wrong as assaulting children.)

In some cases, fairness also means that if we have a contract with someone, spoken or unspoken, it would be unfair for one person to hold up their end of the contract and for the other to get out of having to do the same.

For instance, if it would be unfair to agree to a haircut at a salon and then refuse to pay even though the stylist has delivered the haircut promised. It would be unfair if you and your roommate have devised a chore schedule, but your roommate never does their share of the chores and you do. It would be unfair for a friend to expect me to listen to their problems, but when I have problems, they’re always mysteriously busy. (However, contrary to popular opinion, the way to make this situation fair is not to try to force the friend to listen to your problems. It’s to scale back or end the friendship until the situation feels fair to you. Consent is a thing.)

It’s weird to hear Al Franken’s resignation referred to as “unfair.” That implies that someone out there is not holding up their end of the bargain.

What people usually mean when they say this is that it’s unfair for Franken to “have” to resign when similar Republican politicians don’t. But rather than laying the blame for this unfairness solely onto Republicans and their constituents, they lay it much more directly onto the Democrats calling for Franken’s resignation even though his counterparts don’t “have” to resign.

To me, this is a backwards and morally bankrupt way of looking at things. It presumes that if Republicans had to resign when facing similar allegations, only then would it be fair for Democrats to have to do the same. Or, on the other hand, it would be fair if Franken’s resignation caused an equivalent Republican to resign as well.

But if you have used your position of power to take advantage of others, you deserve to lose that position—not in order to get anyone else to lose theirs too, and not as a goodwill concession towards those who already have, but because you have committed a crime, and you are not a fit or safe person to serve in this position. Sexual assault is a crime. Workplace sexual harassment is a crime. These things are also morally wrong. That’s why Franken should go. Republicans have nothing to do with it.

Sure, it admittedly does suck that Republicans rarely face consequences (or face them as seriously) as Democrats do in these situations. But that’s not “unfair.” There’s no “double standard.” The reason this pattern happens is because most Democratic voters don’t want to vote for confirmed sexual predators, whereas most Republicans are quite okay with this as long as he’s anti-choice and whatnot. That’s how you get Roy Moore.

I’ve heard folks say that they wouldn’t vote for Al Franken again because it would feel too icky, but they don’t want to see him “ousted.” But the fact that you wouldn’t vote for him again is exactly why he’s leaving.

So no, this isn’t a case of “they go low, we go high.” It’s not a double standard. It’s not “being better” than the Republicans. It’s not “eating our own.” It’s simply reading the fucking room, including the writing on the wall.

And if this is unfair, the only way for us as Democratic voters to make it fair is to commit to voting for candidates whose stance we support even if they are admitted/confirmed sexual predators. Then it would be “equal.”

So there’s no “unfairness” here, but there is an injustice—the injustice of conservative indifference to sexual violence and to human suffering in general. It’s the injustice of the just world fallacy, the injustice of harmful gendered thinking, the injustice of racism, sexism, homophobia, xenophobia, Islamophobia, and everything else in that deplorable bucket.

And while I’m on this topic, I also disagree that Al Franken handled this any differently/better than your average powerful man accused of something terrible. Aside from his decision to resign (presumably for the reasons I discussed above), his response is typical. His resignation announcement comes with no apology, and it comes only after numerous credible accusations (including photographs) have been made. It wasn’t proactive. I don’t sense any genuine regret, remorse, or understanding from him. And I wouldn’t expect it—these men know that what they’re doing is wrong. A child knows it’s wrong.

I believe it’s utterly wrong for us to heap praise on people who have kept their intentional acts of harm towards those less powerful than them hidden for years or decades, continually deny them, deny the first accusations, and finally relent when “proof” appears and everyone clamors for resignation. This isn’t remorse, it’s not “learning and growing,” and it’s not accountability. It is, again, reading the room.

And when you consider the immense risk and labor that the accusers have to take on every single time one of these powerful men is brought down (and especially when they’re not), it’s even more unfair. Aside from surviving multiple incidents of sexual harassment and/or assault, these accusers risk their careers, relationships, privacy, and whatever healing they’ve managed to do every time they speak out. Many of them face serious consequences, much more severe than Al Franken or any other powerful sexual predator. Job loss, death threats, lost friends, reliving what happened to them.

I have yet to see a powerful predator “apologize” or oh-so-graciously decide to step down before detailed accounts of their behavior are posted all over the internet and in major media outlets; before the people whose opinions and bodies they actually respect start to get uncomfortable; before the petitions circulate. That’s because they don’t want to. Al Franken didn’t want to. He doesn’t want to be accountable. He has to, because his base demands it.

I refuse to call this pathetic attempt at faking empathy “remorse.” I do not respect Al Franken. I do not thank him for his “apology.”

Call me when a predator removes himself from a powerful position without dozens of survivors having to cut themselves open and bleed for our satisfaction first. Until then, frankly, I don’t give a damn.


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There’s Nothing “Unfair” About Al Franken’s Resignation

Social Workers Cannot Prevent Mass Shootings For You

It wouldn’t be a post-mass shooting news cycle without the renewed calls for social workers and therapists to do more to gently guide potential mass murderers off the path of murdering dozens of people.

This idea fails on a number of levels. It links murderous violence with mental illness in a way that countless mental health professionals and individuals with mental illness have identified as stigmatizing, empirically false, and unhelpful. It is legally and economically untenable, as there is no way to mandate people to counseling just for owning lots of guns and being angry, and there is insufficient funding for such a large expansion of social work services. (There is insufficient funding for the social work services we have now.)

It is not based on any research showing that mental healthcare can help prevent this type of violence. It is ethically preposterous, expecting untrained, underpaid social workers to place themselves in the literal line of fire. It neither addresses the root cause of the problem (toxic masculinity) nor provides the type of bandaid solution that actually stops the bleeding (effective gun control legislation).

It’s just a way for people to feel like Something Is Being Done. Except it isn’t.

There’s a reason why the National Association of Social Workers and the American Psychological Association consistently support effective gun control legislation. That’s because people who actually work in this field rather than armchair-quarterbacking it understand that there’s only so much we can do to prevent violence given that there will always be people who are determined to commit it. For starters, a social work-based mass shooting prevention program is practically impossible for three reasons:

1. Therapy cannot work if you do not want to change anything about yourself and do not have any internal motivation for doing so.

American mass shooters typically demonstrate what sociologists call “aggrieved entitlement“–they think they’re owed something and they think it’s the rest of the world that’s the problem. Even if you somehow forced such a person into therapy, all they’d do is talk about how everyone has wronged them, and any suggestion the therapist makes about changing their own behavior just makes the therapist part of the problem, too.

Olga Khazan sums up the research in The Atlantic:

While improving access to mental-health care might help lots of suffering Americans, researchers who study mass shootings doubt it would do much to curb tragedies like these. According to their work, the sorts of individuals who commit mass murder often are either not mentally ill or do not recognize themselves as such. Because they blame the outside world for their problems, mass murderers would likely resist therapies that ask them to look inside themselves or to change their behavior.

Even clients who are mandated to therapy by the courts or, less formally, by a partner or parent have some sort of internal motivation for change, even if it’s “to get my PO off my back” or “because my girlfriend said she’ll leave me if I don’t.” They may be resentful, especially at first, but they understand that they’ll need to change something about themselves to achieve their other goals. And in my professional experience, these clients will not stick to treatment or benefit from it if they don’t end up finding their own reasons for being there. Forcing someone into counseling is rarely effective. It’s mostly something our institutions do in order to be able to sign a form stating they did.

This is something I really wish more laypeople understood. Therapy is not surgery. It’s not shoving a pill down someone’s throat. You can force someone to come to a therapist’s office and sit in it, but you can’t force someone to receive therapy.

And I can tell most laypeople don’t understand this, because every time this topic comes up, I have to watch strangers on Twitter accuse licensed mental health professionals of being “incompetent.” It’s absurd. It’s like accusing a mechanic of being incompetent because they can’t fix a car you refuse to bring to their fucking shop.

2. You cannot mandate someone to counseling who hasn’t broken a law or endangered themselves or others.

Many of these commentators glibly waving away the idea of effective gun control legislation say that we should somehow “identify” these potential mass shooters and send them to counseling. I’ve already explained that they won’t go voluntarily (or use the time for anything other than complaining about the rest of the world if they do), so that only leaves court-ordered treatment.

This is a complicated legal area and I am emphatically Not A Lawyer, but speaking from my experience and professional knowledge, here are the types of mandated clients I’ve seen: 1) clients who are required to receive mental health treatment as a condition of probation; 2) clients who are required to receive mental health treatment in order to regain custody of their children after a case has been opened with child protective services; and 3) clients who are ordered into treatment by the courts when there is “substantial risk” to themselves or others because of an untreated mental health condition.

In practice, that “substantial risk” has to be extremely high for a white person to be forced into treatment. For a person of color, it is much lower. For clients who are truly mentally ill, this whole painful and drawn-out process tends to make them even more suspicious of everyone around them who claims to want to help, and rarely seems to lead to effective long-term care or recovery.

And what would be the red flags? An obsession with vengeful violence and amassing tons of weapons? Good luck proving to a court in this country that that qualifies as a “substantial risk” to anyone’s life. That’s what we expect of white men.

Even if it is legally possible to get someone like Stephen Paddock into treatment, I highly, highly doubt that treatment would’ve done anything to prevent that shooting. In fact, I can see many ways it could’ve made it worse.

3. Not all mental health conditions are treatable, let alone curable.

Even if we assume that mass shooters like Paddock have a diagnosable mental health condition–a tenuous claim at best–we cannot assume that mental health treatment would’ve been effective.

First, a little primer on diagnostic categories.

The previous version of the DSM, which was replaced by the DSM 5 in 2013, used five “axes” to categorize diagnoses. Axis I was basically “all psychological diagnoses besides personality disorders and intellectual disabilities.” Axis II was–you guessed it–“personality disorders and intellectual disabilities.” Broadly speaking, axis I disorders are treatable. Axis II disorders are not.

Personality disorders are different from other mental illnesses in that they are typically present from a very early age and continue for the rest of the person’s life. Until they’re diagnosed, people with personality disorders typically have no idea that they may be mentally ill and rarely think of themselves that way even after diagnosis. They may be distressed by the ways in which their disorder affects their lives, but they generally attribute this to the faults of others/society.

There are three personality disorders that most often come up in the media or in conversation: narcissistic, antisocial, and borderline. Of these, borderline is the only one that’s really treatable in any meaningful sense. It’s certainly the only personality disorder I was ever taught to treat, and I have many clients with it who make huge improvements–again, because they tend to want to change. They’re unhappy as they are.

Clients with narcissistic or antisocial personality disorder are generally considered untreatable. When I attended a training on these disorders a few years ago, the presenter–a psychologist who worked for years in prisons and in private practice–emphasized that the only somewhat effective strategy is “behavior management.” You can probably imagine what that means, and it only really has any meaning inside an institution.

It’s important to remember that personality disorders are not, like, A Thing in the same way that diabetes and cancer are A Thing. They are categories that we created to help describe our social world. The idea of even having these categories at all is a pretty controversial one in the mental health treatment community despite their inclusion in the DSM, because many of us don’t believe that we should be in the business of designating certain personalities as disordered (or “normal”). While it’s clear that there’s something “wrong” with people who meet the criteria for diagnoses like antisocial personality disorder, it doesn’t really make sense to refer to these people as “mentally ill,” despite how much the public may want to.

So, we’re stuck. The men who fit the mass shooter profile are extremely unlikely to want therapy or benefit from it. There is probably no way to force them into it, and almost no chance it would be effective that way. And whether or not they are diagnosable with anything in the DSM, there are plenty of things that can be “wrong” with someone’s personality that may not be alterable at all.

So you can see why it’s extremely frustrating to hear, over and over again, that rather than enacting common-sense legislation or having an open conversation about the way we define masculinity in our culture, we should rely on social workers and other mental health workers to save us from this.

It’s not just that it’s impractical and not evidence-based. It’s the suggestion that we’re somehow not doing our jobs, or that our job descriptions should be expanded. Now, in addition to treating mental illness, reducing substance abuse, helping people with criminal backgrounds reintegrate into our society, assisting people with disabilities with squeezing themselves into our capitalist workplaces, teaching neglectful parents the skills they need to parent safely, finding safer homes for abused children, finding housing for the chronically homeless, advocating for people who have difficulty finding their way around institutions like courts and hospitals, educating the public about health and safety, deescalating situations involving people in crisis, supporting people through aging, illness, or hospice, conducting research, writing policy, lobbying lawmakers, organizing communities, and any number of other critically important tasks that get thrown our way because nobody else wants to do them–now we’re also expected to “personally disarm” potential mass shooters.

What, pray tell, the fuck?

I love my job, and my profession. Although I don’t personally do all of the things I listed above–no social worker does all of them–I think those are all crucial aspects of social work, and they all need to be done.

But more and more I feel that social workers are just the people we turn to when we’ve fucked up our society and want someone else to take the responsibility of fixing it.

We wouldn’t need to help people with disabilities force themselves into the workforce if our society had adequate support for them, or if workplaces were more flexible. People with criminal backgrounds wouldn’t need so much help if employers didn’t fucking refuse to give them a chance the vast majority of the time. There wouldn’t even be nearly as many people with criminal backgrounds if not for the so-called war on drugs and racist policing and sentencing practices. People wouldn’t need social workers to help them navigate the impossible thicket of Social Security, Medicaid, Medicare, SNAP, HEAP, and whatever if we would just fucking institute universal basic income. There wouldn’t be nearly as many homeless people to house if not for all of the above. Delete institutionalized racism from our country’s history entirely, and you’d be surprised how many so-called “social problems” would diminish right along with it.

Sure, we’d need social workers even in a pretty ideal society, and that’s fine and good. There will always be mental illness, substance abuse, child neglect, and so on. But what’s happening right now is that too few social workers are being paid too little to deal with problems that are way, way too big for our profession. That’s true of poverty, homelessness, and crime, and it’s especially true of mass shootings assisted by weapons that should never have been legally sold to anyone who isn’t defending themselves from a fucking zombie apocalypse.

Right now, the existence of the social work profession is just an excuse for almost everyone else to do diddly squat about social problems because don’t worry, a woman (88% of social workers are women; African Americans have about twice the representation in social work as they do in the general population) with no protection besides a cell phone and a crisis deescalation training certificate will handle this middle-aged white man with 20 semi-automatic weapons in his hotel room.

I know you’re going to ask what my solution is, if social work isn’t it. Look: I don’t have a solution. Because not only is my specialty mental health, not violent crime (the two have relatively little to do with each other), but I also don’t think that the solution is going to come from my profession, at least not single-handedly. This is a political problem, this is an economic problem, this is a cultural problem, this is a sociological problem.

Some smart people say that the research* on gun control shows it doesn’t work. Plenty of other smart people say that it shows that it does. Part of the problem is that you can’t fully research the impact of policy without instituting the policy, and looking at other countries or smaller political units isn’t going to help. Sure, Australia can’t tell us exactly how gun control will work here, but neither can Chicago.

What is absolutely certain is that violence has always been, and will always be, a feature of every human society. The meanings, conditions, and extent of the violence may differ, and certain factors may increase or reduce it, but it’s going to happen.

There was a time when it happened mainly with fists, knives, swords, or pistols. Lately it has been happening with rifles modified to be able to fire 90 shots in 10 seconds.

Back then, if a dude got mad and stabbed someone with a knife or challenged him to a duel, nobody called in social workers to solve the problem. (Not least of all because they didn’t exist.) Now when a dude gets mad and is able to murder 58 people and wound over 500 more almost instantly, we’re suddenly supposed to fix it.

I don’t know how to fix it, and I don’t think any of my colleagues do either, and if it’s all the same to you, I’d like to live long enough to see an end to this absurdity.


  • Also relevant is the fact that the 1996 Dickey Amendment to the federal omnibus spending bill bans the CDC from using its funds to “advocate or promote gun control,” which in practice has severely limited its ability to research whether or not gun control works at all. This amendment has been opposed for years by the American Academy of Pediatrics, the American College of Preventative Medicine, the American Psychological Association, and the National Association of Social Workers.

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Social Workers Cannot Prevent Mass Shootings For You

“Sure, a woman can be President–just not that one.”

Throughout my years of dating polyamorously, I’ve observed that there are two types of monogamous people.

One type is direct and upfront about it. They choose monogamous relationships, and if they’re with someone who wants an open relationship, they’re clear about the fact that that won’t work for them. Either the couple agrees to stay monogamous, or they break up.

The other type will agree to “try” an open relationship with someone they’re really invested in who really wants it. With varying levels of enthusiasm, they’ll say that “I just want you to be happy” and “I’m okay with it if it’s important to you” or even “I want to do this too.”

But then you actually start trying to date other people, and…they just seem to have a lot of issues with the specific person. “He doesn’t seem like a good guy and I don’t think you should date him.” “Look, I’m fine with an open relationship, but you’re spending way too much time with her and I don’t like where this is going.” “I don’t think he respects our primary relationship, so I’m uncomfortable with this.” “I know this date is really important to you, but I’m just having a really bad night. Do you think you could stay home?” “Could you just see them on the nights when I’m unavailable?” “I’m concerned that you’re choosing partners who aren’t going to treat you right.” “I don’t want you to have sex with them in our special position, or have dinner with them at our special restaurant, or watch our special TV show with them, or…”

Obviously, any of these things could actually be true in any given situation. But after a while you realize that your partner has a problem with every poly situation you find yourselves in, and that maybe the problem isn’t those new partners, or you, or even them. Maybe the problem is that they just don’t want to be in an open relationship, and don’t want to say so.

That’s the weird thing I kind of flashed back to when I was reading this article about Elizabeth Warren. It seems that there’s a certain sort of liberal, progressive, or moderate who says, “Sure, there’s no reason a woman couldn’t be President–it’s not about gender,” and yet, like a controlling partner in a poly relationship with way too many “rules,” they keep vetoing every potential female candidate without even necessarily realizing why. She’s not radical enough. She’s married to a creep. She’s too angry. She’s too robotic. She’s just not “presidential.” She opposed single-payer. She didn’t support same-sex marriage until others in the party did. Her views on sex work are regressive. She has too much money, and gets paid too much for speeches. She doesn’t actually care about what she claims to care about.

Sometimes I imagine doing a research study in which I take Bernie Sanders’ entire biography and political history and create a fictional female candidate out of it, and see how she polls.

Of course, she’d poll way worse than Clinton. She’d be a shrieking old biddy, a crotchety grandma who won’t cooperate with anyone and is probably approaching senility. A crazy cat lady who belongs in a nursing home with her collection of knitting needles and old magazines. I can’t even imagine a woman that old coming anywhere near a presidential primary. I can’t imagine people cheering at rallies for a woman that old and angry. It doesn’t happen in our culture. And in our culture, a female politician with Sanders’ temperament and political beliefs would never present herself or do her work the way Sanders does. She can’t afford it.

(Or, for fun, imagine Bernie Sanders as a Black man. How would his remarks about labor and inequality go over then?)

Like the unwillingly poly partner who won’t use their words except to say, “No, not this one” and “No, not that one either” every time their partner tries to date someone, these totally-not-sexist voters have us all believing that somewhere out there is a woman they think is qualified to occupy the Oval Office. But just not this one. And not that one either.

Of course, my opening analogy only goes so far. There’s nothing wrong with preferring monogamy–and being open about it. There’s a lot wrong with preferring male presidential candidates.

But if you do, you might as well be open about it. Then the rest of us can stop wasting our time trying to generate the platonic ideal of a female candidate to get you to finally vote for one.

The worst thing about it is that Republicans are really great at using progressives’ values against them to erode support for otherwise-popular candidates. As Rebecca Traister writes in the piece I linked to:

The playbook that the right is running against Warren — seeding early criticism designed to weaken her from the left — is pretty ballsy, given that Warren has been a standard-bearer, the crusading, righteous politician who by many measures activated the American left in the years before Bernie Sanders mounted his presidential campaign. Warren is the candidate who many cited in 2016 as the anti-Clinton: the outspoken, uncompromisingly progressive woman they would have supported unreservedly had she only run. Yet now, as many hope and speculate that she might run in 2020, the right is investing in a story line about Warren that is practically indistinguishable from the one they peddled for years about Clinton. And even in these early days, some of that narrative is finding its way into mainstream coverage of Warren, and in lefty reactions to it.

This is something that the left rarely does to right-wing candidates, and when anyone tries, we rightly condemn them for promoting values we all despise. For instance, I strongly criticize any so-called liberal who tries to attack a male right-wing politician by accusing him of being secretly gay, or a female one for having an abortion. We’d never denounce Republicans for being insufficiently Christian.

But the right is constantly trying to play a game of “Gotcha!” with Democratic candidates, pointing out that they’re actually totally racist or corporate or whatever. They love it when a prominent male Democrat gets caught in a sex scandal because then they get to accuse anyone who continues to support him politically of excusing sexual harassment. (Because you know Republicans care so much about sexual harassment, considering who’s in the Oval Office.)

And as Traister explains, these talking points end up embedded in mainstream media and all over our progressive friends’ social media feeds.

Obviously, I’m not saying don’t criticize Democrats when they’re racist or corporate or whatever. Please do. Please do.

But I really want some of these folks to name me even one female politician they would vote for in a Presidential election.

I mean, sure, they’d probably name quite a few of them, right now in the relative safety of 2017. But drag any of these presumably-qualified candidates through our typical election media cycle and suddenly we’d be hearing a different story.

So, personally, I’ll believe that you believe a woman can be President when you actually vote for one, and not just because the alternative is Donald Trump.


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“Sure, a woman can be President–just not that one.”

We Are Pretty Confident There is No Longer a Threat

I keep coming back to something Clark County Sheriff Joseph Lombardo said yesterday morning, after Stephen Paddock, a 64-year-old white man, opened fire on a music festival in Las Vegas from a hotel room where he’d stashed at least 20 legally purchased rifles, killing 59 people and wounding at least 500.

He said: “Right now we believe it’s a solo act, a lone wolf attacker. We are pretty confident there is no longer a threat.”

Even if you take that first sentence in the most literal way–that Paddock was not part of any organized group and did not have any accomplices in this terrible crime–the second simply does not follow. Because the “threat” did not end with him killing himself in his hotel room, just as it didn’t begin with him arriving there in the first place.

Although quite a number of people have already called me a “cunt” on the internet since yesterday because I referred to this act as terrorism, I will continue to do so, and I’ll explain why. (By the way, you’re not going to get very far condescendingly suggesting that an Israeli citizen doesn’t know the definition of terrorism. I’ve lived the definition of terrorism.)

People who blame these shootings on mental illness are correct in one way, and that’s when they say that “no normal person would do this.” Although they’re wrong in their conclusions, it’s true that in a normal, healthy human society, individuals don’t suddenly commit mass acts of violence, stunning all of their loved ones and the world at large.

But the situation of men in our society is not normal, and the addition of easily available semi-automatic firearms is the spark to that particular tinder.

Toxic masculinity isn’t a mental illness, but it isn’t healthy or “normal,” either, except in the statistical sense. We raise men to ignore and suppress any emotion besides anger until they’re no longer even able to identify any other emotion. We encourage them in many subtle and not-so-subtle ways to act out that anger as violence. We teach them that if the world doesn’t provide them with what they want–despair, and then anger, and then even violence, is a reasonable response. We teach them that emotional attachment, remorse, and self-criticism are feminine, and that if you’re a man who is feminine, you’re better off dead.

And then we give them easy access to guns–and not only that, but we tell them that they deserve those guns. That they deserve them in the literal same way as they deserve the right to criticize their government or to practice their religion.

By “we,” I obviously don’t mean you and me, except that I do mean you and me. Nobody did this to men; we all did it to ourselves. Non-male people perpetuate toxic masculinity all the time. I did it when I turned away in discomfort from male partners who were crying; male friends of mine do it every time they bury their feelings rather than acknowledging them.

But women and trans folks aren’t going to be able to fix masculinity. Men, especially cis men, are going to have to either reclaim it or toss it aside.

Terrorism is the use of violence and intimidation against civilians for political aims. I suppose this is where people are going to disagree. We relegate these men’s issues, or whatever they are, into the private sphere. But toxic masculinity is a political issue, and the violence it sparks certainly has the effect of terrorizing large groups of people, especially women, queer/trans people, and people of color.

When white men go on shooting sprees, many of us feel like hostages. Whatever it is these men want–sex, love, respect, attention, a demographic majority–we’re being held at gunpoint until they get it.

Marc Lepine, who murdered 14 women in Montreal in 1989, wanted a spot in a university and a job, and he thought women had taken those things from him.

Eric Harris and Dylan Klebold, who murdered 13 people at Columbine High School in 1999, left copious written notes about their anger at specific people at school and at society in general.

James Eagan Holmes, who murdered 12 people at a movie theater in Colorado in 2012, was reportedly dissatisfied with his life and inability to find a job.

Elliot Rodger, who murdered six people in Isla Vista, California in 2014, felt that he was denied the sex and attention that he deserved.

Dylann Roof, who murdered nine African American churchgoers in Charleston in 2015, thought that African Americans are taking his country from him, and stated that “I have no choice” but to do something about it.

There are dozens more examples easily found. The common thread here isn’t mental illness, or illegally obtained firearms (many of them were legally purchased), or poverty. It’s white men who are angry, think the world owes them something, and have access to guns.

And even if all of these mass shooters were mentally ill, and even if their mental illness contributed to their actions, that’s still not a good explanation. A quarter of American adults experience mental illness at some point. Most don’t shoot anyone. Something else has to make the difference.

So, sure, I could Wait And See before calling this latest shooting an act of terrorism. And maybe we’ll learn something that makes me change my mind. Changing one’s mind is fine. But at this point, I’m going to go with the overwhelmingly most likely explanation, which is that Stephen Paddock is yet another white men who was angry about being denied something he thought he deserved, and decided to make that point with mass violence. (Imagine my immense shock when I read that local Starbucks employees recall Paddock constantly being a piece of shit to his girlfriend.)

Many terrorist acts contain a grain of validity in that they’re the desperate acts of people or groups of people who no longer know how else to get what they want–which, in some cases, is a valid aim. (In other cases, it isn’t.) The terrorism of white American men is unique in that they don’t see themselves as part of a political group. But, of course, they are–it’s just not an organized one.

What they’re seeking is relief from their anger and misery, and mass shootings are only the most extreme of their attempts to get it. You see the less dramatic, less immediately deadly of those attempts all the time: the bitter online trolls, the men who expect their girlfriends to fix all of their problems, the Trump voters, the hacky comedians with their tired sexist jokes, the corporate workaholics.

Unfortunately for the rest of us, toxic masculinity teaches men to see the causes of their problems as always outside of themselves, which is why talking to angry men about “toxic masculinity” goes over about as well as talking to them about about Andrea Dworkin.

There’s a reason bell hooks named her excellent book on this topic The Will to Change. We can’t force men to change or make these changes for them. Until they do that for themselves, we’re all hostages to toxic masculinity. And until then, Sheriff Lombardo is very much wrong, because there is very much still a threat.


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We Are Pretty Confident There is No Longer a Threat