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.
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. 
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. 
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. 
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. 
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. 
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.
 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.
[Content note: descriptions of injuries and gun violence]
Yesterday I discussed the phenomenon of adults expecting children to become impromptu school counselors for kids who are socially excluded and possibly planning a school shooting. Today I will talk about another job title that some actual people who are old enough to vote and drink alcohol expect children to take on: field medic.
Erstwhile Republican presidential candidate and professional stack-of-rats-in-a-suit Rick Santorum had some comments about the young people organizing against gun violence, which I recommend reading out loud to yourself because that’s the only way I’ve found of making sense of this word salad:
How about kids instead of looking to someone else to solve their problem, do something about maybe taking CPR classes or trying to deal with situations that when there is a violent shooter that you can actually respond to that….They took action to ask someone to pass a law. They didn’t take action to say, ‘How do I, as an individual, deal with this problem? How am I going to do something about stopping bullying within my own community? What am I going to do to actually help respond to a shooter?’… Those are the kind of things where you can take it internally, and say, ‘Here’s how I’m going to deal with this. Here’s how I’m going to help the situation,’ instead of going and protesting and saying, ‘Oh, someone else needs to pass a law to protect me.’ …I’m proud of them, but I think everyone should be responsible and deal with the problems that we have to confront in our lives. And ignoring those problems and saying they’re not going to come to me and saying some phony gun law is gonna solve it. Phony gun laws don’t solve these problems.
(You might need to read it a few times, slowly, before it makes any sense. Actually, it may never make sense at all.)
The salient points here are:
Children should stop complaining to adults about their petty little problems like being shot with assault weapons in schools, and instead “take action” to “do something” about it.
Taking a CPR class is a good response to the problem of school shootings.
Laws cannot protect children from violence.
Demanding that adults pass laws doesn’t count as “doing something” about a problem.
Although I’m still convinced that Santorum is a stack of rats in a suit–surely no human being could blame children for being insufficiently proactive about surviving gun violence–I’m going to respond to his arguments as if he is a human being. I’ll grant him that, even if he wouldn’t grant it to me, or to my teenage siblings.
To state the very, very obvious, CPR is not an appropriate response to a gunshot wound. I am certified in CPR and first aid. CPR, or cardiopulmonary resuscitation, is an emergency procedure (my god, I can’t believe I’m even having to write these words, what the fucking hell) that is useful in exactly one situation: when someone’s heart has stopped. Applying manual compressions to a person’s chest in this particular way can help blood continue to circulate through their body and reach their brain, increasing the chances that they’ll survive once they get prompt medical attention and reducing the chances of brain damage.
I will never forget the words of the fire department chief who facilitated my most recent CPR refresher training: “You can’t hurt someone by giving them CPR, because if their heart has stopped, they are already dead. You’re not gonna make them more dead.” CPR, while taught along with first aid in many cases, is different from many other first aid techniques in that if someone needs CPR, they are already minutes (or even seconds) away from death. CPR can ultimately fail even if administered perfectly because the body needs oxygen and it’s pretty rare for CPR to actually restart a stopped heart. It’s just a way to keep the person from really dying until the paramedics get there.
So, if you get trained in CPR, you will need to be prepared for the very real possibility that you will watch another human being die with your hands on them. That’s…you know, kind of a big deal.
But all of that is mostly irrelevant here because CPR will not keep someone from bleeding out from a gunshot wound. What will, if they’re lucky enough to have been shot in an arm or a leg, is a tourniquet, a first-aid technique that blocks blood flow to the injured part of the body to limit blood loss before the person can get emergency treatment. It’s not for the faint-hearted, whether you’re making or receiving one.
Getting trained and certified in CPR and first aid is a great idea, including for young people. When I was a teenager, many of my friends worked as pool lifeguards during the summers and it definitely made me feel a bit safer to know that they were all trained in, well, guarding lives.
However, when I think about teenagers learning first aid, I imagine situations like, your friend stepped on a sharp object, or you got into a minor car crash, or someone forgot their EpiPen at marching band practice. I don’t think about mass shootings.
So let’s think about them now. If you found yourself sympathetic to Santorum’s comments, I want you to imagine yourself as a teenager, crouching beneath a tiny classroom desk with your best friend, who is bleeding profusely from a gunshot wound. More gunshots and screams are echoing in the halls. Your best friend is trembling, tears streaming down their face. Their blood is on your hands and clothing. You can’t risk getting up and finding a first aid kit, because then you might get shot too. You have a few minutes to save your best friend’s life with a tourniquet you made with a broken-off chair leg and someone’s belt.
Imagine surviving this. Imagine surviving it, but your best friend dies anyway, underneath that desk with you. Imagine that your best friend survives, but with permanent physical damage (to say nothing of the psychological impact). Imagine that your best friend survives, but the other classmate next to you dies, because you helped your best friend first. Imagine finding out later that you spent five valuable minutes performing CPR on someone who was never going to wake up anyway, while someone else bled out across the room from you.
Imagine that this is our lawmakers’ best answer to the fears of children who tell them they don’t want to die in their schools.
Kids and teens are capable of incredible acts of bravery and selflessness, including saving lives. But even after all this–by which I mean, our general political trajectory of the past decade or so–I can’t quite wrap my mind around how it is that a man with children (young children) could so blithely suggest inflicting such trauma on them rather than reckoning with the $116,000 he has received from pro-gun lobbyists since 1990.
See, this is why I’m pretty sure Santorum is a stack of rats in a suit.
But if you’re not buying that theory, I have another one, and it’s more depressing.
What do you think Santorum would’ve said if the Parkland students had, instead of advocating for greater restrictions on gun ownership, marched to their statehouse and to Washington, DC to demand fewer restrictions on gun ownership? What if they’d asked for laws that would provide guns and weapons training for teachers? Laws that would provide grant funding to the NRA so that it can do more of its valuable work? Laws that would increase, in theory, the likelihood that a “good guy with a gun” could take down a school shooter?
Somehow, I don’t think he’d be rebuking them for “asking someone to pass a law.” Those kids would be invited to speak at every GOP rally and fundraising event from Florida to Alaska. We wouldn’t be hearing a peep from conservatives about “coaching” and “taking political advice from kids.”
In other words, it’s just more of the same tribalist bullshit we’ve been pointing out since the election and before, and it doesn’t smell any different.
When traumatized children demand political changes that are associated with Democrats and progressivism, it suddenly becomes okay for Santorum and others to bully them, ridicule their physical appearance, and casually suggest further traumatizing them by forcing them to literally take the problem of gun violence into their own hands. 
Memo to Santorum, or the rats which comprise his physical form, or whatever: “asking someone to pass a law” is taking action, especially when that someone is a fucking lawmaker tasked with keeping our schools and communities safe and when the person doing the asking is a fucking child who’s supposed to be able to rely on adults to keep them alive long enough to vote those adults the fuck out of public office.
 Unfortunately, this is often the only option available to children of color living in areas marked by frequent gun violence. For example, in Chicago, a grassroots group called Ujimaa Medics teaches kids and teens to give first aid to gunshot victims. Remember that if we’re saying the Parkland students don’t deserve this kind of trauma, neither do the children of color all over the country who live it every day.
Before cancer, I wasn’t sure if I wanted to have kids. I knew that I had plenty of time to decide, and that I might start to feel strongly about having them at some point. But I was committed to not having them until I felt very strongly about having them, and I was also quite certain that I have no desire to experience pregnancy and childbirth. I find the mere thought of it revolting and horrifying.
Because of that, my thoughts about becoming a parent were always murky and difficult to bring into focus. I was obviously aware that adoption is a legitimate option even for people who are able to conceive and bring a pregnancy to term. But everyone I knew–and knew of–who had adopted children had done so because they couldn’t become pregnant or get someone pregnant, or because they couldn’t do so with the specific person they wanted to have the baby with.
I couldn’t imagine having to explain to dozens of nosy people why I had chosen to adopt, and face the disapproval of all the women who believe that pregnancy and childbirth is The Most Rewarding Thing You Can Do As A Woman and would look down on me for wanting to spare my body from it. When I’d shared my feelings about pregnancy and childbirth, I was usually told that if I wanted a baby badly enough, I’d be willing to do anything, even put myself through labor.
I understand now that a lot of that is post-hoc rationalization on their part. I have no doubt that if I actually had a child, I would do anything to preserve that child’s life, even go through pain and suffering like that. But since no child yet exists–the child is theoretical at this point–I’m not willing to sacrifice very much at all. Some people really do feel that way, but I can’t love someone who doesn’t exist yet.
For a long time, these were things I thought about pretty rarely, because they weren’t really relevant. I wasn’t in a place in my life to have a baby, and I had years to get to that place if I wanted to. None of my partners have wanted to have children while we’ve been together, so the conversation didn’t come up that way either.
Then, in an instant, everything changed, and I was sitting in an exam room in a gown and my oncologist was telling me that if I want to be able to conceive later, it would be a very good idea to freeze my eggs before starting chemo.
“Would it delay treatment?” I asked.
“Yes, by at least a few weeks.”
“Does that increase my risk of metastasis?”
“Any delay in treatment potentially increases your risk, though in this case it’s a small risk and many women choose to–”
You know that scene in Doctor Strange when the Ancient One strands Stephen on top of Mount Everest to force him to learn how to use his nascent magical powers? That was me in that moment. The prospect of death can catalyze all kinds of learning and insight. In that moment, stranded on the mountain, I learned that I value “natural” childbearing so little that I was unwilling to accept even a very small, oncologist-sanctioned risk for it.
The doctor continued: “You seem like you know what’s right for you, but I am obligated to warn you that you might regret that decision later.”
I said: “I may feel sad about it later, yes. But I will never regret being alive to be sad about it.”
A few weeks later, I learned that even if I’m still able to conceive after my treatment, I shouldn’t. I have the BRCA mutation, which raises my lifetime risk of developing breast cancer to about 70% compared to 12% in the general population. For ovarian cancer, it’s 44% versus about 1%. Any child I conceive has a 50% chance of inheriting this shit.
When I brought this up with my doctor, he immediately told me that they can use IVF to select eggs that don’t have that gene and selectively implant those or whatever, but that sounds like 1) a massive fucking headache and 2) something that I definitely don’t get paid enough to be able to afford. In any case, I do know that that’s not how I want to have a child whatsoever. In fact, I don’t want any needles or other medical instruments to be involved at all.
So that makes two reasons so far why I can’t/shouldn’t get pregnant: the chemo may have destroyed that capability, and I don’t want to pass my genes on. Even if I circumvent these two problems, there’s a third: in order to prevent recurrence, I will be on endocrine therapy for a decade. That means that my ovarian function is suppressed and the estrogen receptors in my cells are blocked.
Theoretically, then, I could have a child when I’m 37, after that part of my treatment is over. But at 35, I become eligible to have my ovaries removed to prevent ovarian cancer. So you can bet that within weeks of my birthday I’ll be back in the hospital for that. There won’t be a window for a pregnancy to happen.
Of course, there could be if I asked to delay that surgery, which they would. 35 is just the earliest age when they’ll agree to do it. But to me that’s just like my decision about delaying chemo to freeze my eggs: in a word, nope.
So, in a matter of weeks I understood that becoming pregnant would be impossible, inadvisable, unethical, or at least more risky than I’m willing to accept. That option summarily slid off the table. I started to consider seriously the fact that adoption would be my only practical way to start a family.
At first I highly disliked this option too. There’s a lot to criticize about how adoption works in the United States. I hated to think that I might end up adopting a baby that some mother–probably young, probably poor, probably non-white–had been pressured to give up. International adoption felt out of the question to me, for similar reasons plus white saviorism. And if we’re being honest, I’m also appalled at the idea of paying such frankly ludicrous sums of money to adopt a child who needs a home anyway. It’s not like the adoption agency is doing me some sort of favor.
And I worry, too, about having a child with an unknown genetic legacy. At least in my family we know what the dangers are. With an adopted child, how would I be able to guide them to take care of their health in adulthood if we have no idea what their vulnerabilities are?
Then again, my parents didn’t know I had the BRCA gene, either.
But in any case, these are mostly solvable problems. I can do my research to ensure that my adoption is as likely as possible to be ethical and non-exploitative. I can make sure my child’s birth parents are as present in their life as they want to be. I can, somehow, save up $30,000. I can accept that we can never fully plan for medical crises.
Once I realized this, my thoughts about becoming a parent started to lose that murky quality that they used to have. I’m still not sure if or when I want to start a family, but I’m no longer distracted by my overwhelming fear of pregnancy and childbirth. Now I can imagine what it might be like to have a baby without all of those visions being clouded by phobia.
As you can imagine, things seem a lot more positive when they aren’t preceded by nine months of suffering. I imagine welcoming a baby into my home without already being wrecked with pain and fatigue. I imagine greeting my baby for the first time with my mind clear and my body strong. I imagine weathering the sleep deprivation of caring for a newborn without already being so depleted by pregnancy and childbirth. I imagine feeding my baby without pain or discomfort. (Obviously, no breastfeeding after a double mastectomy, even if I give birth.) I imagine being able to maintain a sexual connection with my partner even as a new mother. I imagine the months and weeks before I bring my baby home to be full of celebration and activity, not exhaustion, pain, and panic.
I like the idea of meeting my child standing up and wearing clothes, not lying in a hospital bed, covered in bodily fluids with tubes coming out of my body.
Weirdly, that’s what feels natural to me. Pregnancy and childbirth is what feels deeply unnatural, grotesque, and wrong.
And now I’ll never have to go through it.
Of course, that’s ridiculous to even say, because I never had to go through it. I could’ve always chosen adoption if I wanted kids. I know that. But it would’ve been a much more complicated choice, and I would’ve been expected to continue to defend it, or at least say something about it.
Now pregnancy and childbirth are off the table, and although they were never the only things on the table, they took up more than their fair share of space on it. Now there’s plenty of space for other possibilities, possibilities that I might actually enjoy considering.
Self-disclosure–what to share about yourself with a client, and how–is a big topic of debate among therapists. Some old-school psychologists think that you should share as little as possible, and be a “blank slate” to avoid distracting the client from “the work.” Other therapists, especially those who operate within a feminist or relational lens, tend to believe that appropriate self-disclosure can strengthen the professional relationship and move the work along.
Most agree on a few things, though–don’t share personal medical details with your clients, and don’t share anything that you haven’t fully worked through already. It’s one thing to mention to a client that you went through a divorce years ago and that there’s no shame in it and that healing will come; it’s another to tell a client that you’re actually on your way to the attorney’s office after work.
I was, until recently, completely on board with these general guidelines. Then I got diagnosed with cancer, and suddenly they didn’t work for me anymore.
Almost immediately, I dreaded having to explain my absence to my clients somehow. I didn’t know anyone in my field who’s ever gone through anything like this. Neither of my supervisors at work did, either. Most of the time when something medical interferes with work, it’s rather more straightforward than cancer treatment–for instance, a surgery. You tell your clients, coworkers, and supervisors varying degrees of detail about the fact that you’ll be out for 6 weeks, and gently shut down any inappropriate questions.
I, however, was about to start chemo and I’d be working through it. I wasn’t sure how much, and I knew that might change as I went through treatment. As it turns out, it’s uniquely impossible to be vague or coy about cancer treatment. I knew right away that if I tried to spin some bullshit about how I’d be off a few days every other week for “my treatment” and then start showing up in wigs, I would come across like I’m either ashamed of it, or think my clients are children. People know what it means when you miss work every two weeks and lose your hair.
Unable to get any clear direction from professionals with more experience, I went next to Google. Here I found a number of articles by therapists who’d had cancer. They all told their clients that they’d be “leaving this position” and referred them to other therapists. I was confused. Were they not planning on returning to work? Would they have to just build up an entirely new client base? That sounds like a lot of fun on top of recovering from chemo.
One article described a therapist processing her imminent departure with her clients and having to pretend that she was moving on to another job, and reassure her clients that it wasn’t because of them and that she really valued working with them.
Later, she received an email about her own former therapist, who had terminated treatment with her the same way. He’d died of cancer.
Ultimately I decided that this level of deception and fakery not only goes against my ethical values, but would literally be impossible for me to manage. Telling my clients I had cancer was painful enough; I couldn’t imagine having to also pretend that the cancer was actually a cushy new job. Having to apologize to my clients for leaving our work unfinished as if it had been my decision, rather than a horrible thing that happened to me.
So I went for the opposite extreme. I told every single one of my clients that I’ve been diagnosed with breast cancer and would be undergoing chemo followed by surgery. I invited them to ask me any questions they wanted about it and reassured them that I wouldn’t answer anything I truly felt uncomfortable with. Some didn’t ask for any details at all. Most asked if I felt okay to be at work. (I did.) A few wanted to know more–what stage, what type of surgery, what chemo feels like, if cancer runs in my family.
Was it awkward? Sometimes. Did it distract from the client’s therapeutic needs? Maybe, in some ways. Is that ideal? No.
The problem, though, is that therapists are in fact human, and we have human bodies that fail in the same glorious ways as everyone else. I don’t believe I could’ve continued to do this work effectively throughout my chemotherapy while actively deceiving clients about what I’m going through. I also don’t think that would make me a very good role model.
A lot of surprising conversations came out of it. One client revealed his own battle with cancer, years ago. He’d never talked about it. A few mentioned that they really ought to be doing breast self-exams because it runs in their families; I told them where to get more information and explained that when caught early, breast cancer is extremely treatable. One client, surprisingly, brightened and smiled when I told her. She explained that a beloved relative is a survivor of breast cancer several times over and that this relative is her mentor and source of inspiration.
Another client said she was glad I told her. “I’ve been working on being more vulnerable and open with the people in my life,” she said. “If you’d tried to hide this, it would’ve sent the wrong message.”
That conversation was a reminder that while therapists often keep personal information from clients in order to “protect” them or to avoid distracting them, clients may interpret this secrecy as a product of shame, callousness, or both.
That’s not to say that my transparent approach hasn’t had its downsides. It does sometimes make my clients feel awkward about sharing their own problems; cancer tends to be that thing people remind themselves at least they haven’t got, so it can be weird to vent about your shitty job when someone’s just dropped cancer into the conversation. But I always reassure my clients that 1) I’m here because I want to be, and 2) I still see their problems as valid and important even though I have cancer now. The awkwardness usually doesn’t last.
It does sometimes make things harder for me, though. When I was first diagnosed and didn’t know the staging or prognosis, I could hear the unasked question on many of my clients’ minds. No, I didn’t know if I was going to survive or not. (Even now, with chemo going swimmingly, I can tell you that I’m pretty unlikely to die of cancer, but recurrence is a thing and it could happen anytime.) I could only tell my clients the same thing I could tell myself–that I had no reason to expect the worst, so therefore I’d hope for the best.
Sitting with uncertainty is one of the most difficult things in life, and probably the most difficult thing about cancer especially. Yet it’s also one of the most important skills to develop, for me and for my clients too.
As treatment went on, I often found myself having to be a bit performative when clients asked how I’m doing. It’s true that chemo isn’t too bad and that I feel okay most of the time. But some days are very hard. Yes, there were days when I wished I’d stayed home from work, but I didn’t because I wanted to be as consistent as possible with my schedule. (There were other days when I called off even though I’d planned to be there.)
Most days, I’m not my best self at work. I’m just not. It’s just impossible. The only other option would’ve been to take all four months of chemo off work entirely, but that would’ve been worse for my clients, worse for me, and ultimately impossible. I don’t have enough medical leave for that.
So although I don’t tell my clients many details about treatment, I continue to be transparent. I’ve told them that I feel tired a lot. I’ve mentioned that chemo sometimes leaves me with bone aches, which is why I stay home a few days after each treatment. I keep a positive attitude and tell them that many chemo side effects are very well-managed with medication and that chemo isn’t what it used to be. My hope is that if any of them end up being diagnosed with cancer, or having a loved one who is, they’ll remember that, and they’ll remember not to be afraid and to ask the doctor for help if they need it.
Disclosing this to my clients a week after diagnosis–telling 40 or so people that I have a potentially lethal illness and then taking care of them around that disclosure–is the most difficult challenge I’ve faced in my professional career so far. I found myself having to reassure people about something happening to me, something I found (as most people would) horrible and terrifying.
This situation turned the usual ring theory inside out. Normally the person at the center of a trauma or tragedy is the one who gets taken care of by everyone else. But as a therapist, it’s my job to take care of my clients. Which is probably why the conversations were sometimes so raw and awkward–my clients sensed that they “should” be the ones comforting and reassuring me, but they also understood that that’s not their role. And because of the strong therapeutic relationships we’ve already cultivated, we were able to talk about that directly.
I had my last chemo treatment this past Monday, so things are going to be more straightforward from here on out. But that doesn’t mean I’ll be able to stop having conversations about this with my clients. I have multiple surgeries and other procedures in my future and it could drag on for years. I may not be able to be at work as much as my clients (or I) would like, but I hope that by being open and honest I can reassure them that help is available even when I’m not there and make sure they know how much I wish I could be there with them.
Over the past four months, I’ve had to radically redefine what professionalism and appropriate self-disclosure mean to me. As it turns out, vulnerability isn’t just good for my friendships and partnerships; it’s good for my professional relationships too.
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.
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.
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:
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.
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.
Continuing Secular Students Week, I’ve got a guest post from Tim Kolanko, a student activist who was able to use the SSA’s support to bring a speaker to raise awareness of intersex issues and medical malpractice.
I’m Tim Kolanko, President of the Northern Illinois University Secular Student Alliance. A few weeks ago, the national Secular Student Alliance gave my group a grant so we could hold an awesome event, “The Gender Binary and LGBTI People: Religious Myth and Medical Malpractice.” Thanks to their funding, we were able to bring in Dr. Veronica Drantz and two intersex activists to talk about how LGBTI (Lesbian, Gay, Bisexual, Transgender, Intersex) people have been and continue to be victims of medical malpractice purely because they are neither Adams nor Eves.
Psychiatrists, surgeons, endocrinologists, pediatricians, and other medical experts have subjected LGBTI people to bogus and horrific treatments with reckless disregard for patient health and well-being―all the while ignoring the basic tenets of medical ethics and the ever-growing scientific evidence showing LGBTI people to be natural variations. This talk contrasted the scientific evidence with the ongoing medical (mis)treatment of LGBTI people to vividly illustrate the insidious effect of the biblical creation myth.
The event included an hour-long presentation of Dr. Drantz laying out the scientific evidence having to do with sexual development, sexual orientation, and gender identity, arguing that LGBTI people are natural variations. Her presentation was followed by the emotionally powerful personal testimonials of two intersex people that have been harmed by the medical community and society because they are viewed as disordered, not different.
The Project Grant we received from the Secular Student Alliance allowed us to fund not only the speakers, but the video recording of the event! With the help of two on-campus co-sponsors, we were able to put on a successful event. We worked with the my University’s Gender & Sexuality Resource Center and the Women’s, Gender, and Sexuality Studies Program.
Around 40 people took part, despite the severe weather in the area, and we were so excited to be able to network with two large on-campus organizations, which will definitely help for future events!
This event wouldn’t have been possible without the support of the national SSA. Their grant, and their support of our organization, lets us explore the world from a naturalistic point of view, combat the negative connotations associated with being non-religious, and promote critical thinking, reason, and skepticism over faith-based worldviews.
Not only did the SSA give us a grant, but they also provide us with so many free resources and services, like our tabling supplies! They are only able to do this because of the generosity of people just like you.
This week is Secular Students Week, when the SSA is highlighting activism of students like me and my group members. If they get 500 donations this week, they’ll unlock a challenge grant for $20,000!! This money would have a huge impact for groups like mine: help us out by giving today! Even a gift of $5, $10, or $20 can make a big difference: give to the SSA today!
Many debates in the realm of social justice and politics are debates about context. In what context are certain things said, and can those things ever be divorced from that context? Should they ever be?
Take this Facebook post, made by a New York coffee shop I had heretofore found entirely satisfactory:
What is so irritating about this post is the plausible deniability. Surely, a Manhattan coffee shop could just post this image apropos of nothing, perhaps in the holiday spirit, to express gratitude towards the city’s police force. It could just be a matter of city pride; certainly we all like it when there is as little crime as possible. And so on and so forth.
But why post this image now? Why would a coffee shop that has posted nothing but photos, comics, and articles about coffee, store news, six posts about local events, and one cutesy article about Mother’s Day for the entirety of the year 2014 suddenly give a shout-out to the city police department?
I think I know why. But, of course, I can only speculate.
So it is with a lot of other statements that rankle, hurt, or even trigger. “What were you wearing?” Oh, sure, you could just be curious. After all, maybe it was my outfit and not my perceived gender that drew my harasser’s attention that night. Of course, you are very worried about me and just want to make sure that I’m being “smart.” You’re not thinking about the fact that that’s often the first question authorities ask us, and that fashion advice is the only kind of prevention they seem to be able to offer us. You’re not thinking about what happens to women whose outfits were deemed insufficiently preventative. Who helps those women? “Oh, I’m not saying it’s your fault,” you say. “I think anyone who does such a thing is wrong and bad and if it were up to me I would bring them to justice.” Would you? Okay, I’ll grant you that. But historically, that’s not what’s happened, is it?
“What about black-on-black crime?” Certainly it is a tragedy that so many young Black people die at each other’s hands, presumably because of gangs or drugs or one of those other scary things, and really, if a given group wants to stop dying, maybe they should stop killing each other. Never mind that the same ignorance that causes people to ask this question is the ignorance that keeps them from seeing everything that’s already being done, by Black people, to address this issue. Never mind that most white murder victims are killed by other white people, too, because people tend to be killed by those who are near to them and/or have some sort of relationship with them, and our neighborhoods and relationships are still very segregated. Never mind that “black-on-black crime” is a derailment from what is in my opinion a much more preventable issue–the fact that police around the country are killing Black people with virtually no consequences.
Yes, violent crime happens, especially in disadvantaged areas, and that is awful. But that the people tasked with “protecting” us, according to my local coffee shop, are murdering people, especially in a systematically racist way, deserves immediate attention and resolution, because a police officer who murders innocent people is an even greater threat to our society than an ordinary citizen who murders innocent people. Why? That should be obvious: cops have power, weapons, skills, and immunity that ordinary citizens do not. Law enforcement officials can do things like plant meth in the car of a woman who accused them of sexual harassment and then have her arrested on this country’s ridiculous drug laws.
“I don’t see anything wrong with gay people, I just don’t see why they have to be in my face about it.” No, you’re right. Perhaps you are a person who believes that sex, love, and relationships should be an entirely private matter. Maybe you’re uncomfortable when your coworker tells everyone about the vacation she’s planning for her and her husband’s anniversary. Maybe it turns your stomach to see free condoms handed out on your campus. Maybe you change the channel every time a guy and a girl kiss in a TV show and you don’t feel that it’s appropriate for children to see a man and a woman holding hands in public. But you don’t mention that because…maybe people would ridicule you for it, whereas publicly stating that gay couples gross you out is still socially acceptable. I don’t know.
Or maybe you have double standards for queer people versus straight people, and you believe that the things straight people get to do–hold hands and kiss in public, chat at work about their anniversary plans, see relationships like theirs on television, access the healthcare that they need–are not things that queer people get to do. Sometimes queer people are loud and in-your-face about being queer because they are fighting against the idea that they should have to be silent when straight people don’t have to be. Your casual remarks about “I just wish they’d keep it to themselves” are telling us to get back in the closet so you don’t have to be uncomfortable.
“Of course it’s wrong to hate people just because they’re fat, but they really need to lose some weight or else they’ll be unhealthy.” You may think that what you’re saying here is commendable. After all, you must really care about this person and have great concern for their wellbeing. Maybe you even have some helpful weight loss advice that totally worked for you. Really, they should be grateful that you’re trying to help them.
Okay, but the idea that “they really need to lose some weight or else they’ll be unhealthy” is the idea that causes people to hate them in the first place. If weight is perfectly correlated to health, and if losing weight is a possibility for everyone, then only those who do not care about their health would allow themselves to be fat, and only an irresponsible person who lacks self-control would refuse to care about their health. Such a person would not make a suitable employee, doctoral student, or partner, for instance. Such a person would be a bad influence for your children. And the idea that fatness is responsible for poor health 100% of the time keeps fat people from getting the medical care they need, because doctors assume that the problem must be their weight.
Plausible deniability is how all of these statements function. We are expected to take them entirely out of context, as isolated thoughts or ideas or feelings or beliefs that have nothing to do with what came before or what will come after, and nothing to do with the horrors that have been committed in their name. You asking me what I was wearing has nothing to do with the systematic refusal to believe and help people who have been harassed and assaulted. You innocently wondering about black-on-black crime has nothing to do with centuries of white-on-black crime, and with the casual dismissal of this crime, and with the fact that it has historically not been defined as a crime at all. You wishing that queer people wouldn’t shove their sexuality in your face has nothing to do with our erasure, metaphoric and sometimes literal. You patronizingly advising bigger people to get smaller has nothing to do with their mistreatment in all sorts of social contexts, including medical ones. Nothing at all!
But that’s not how communication works. If a celebrity becomes the center of a huge controversy and I post about my love for their films or music, that can and should be taken as a statement of support for that celebrity. If a business comes under fire for its practices or policies and I post about how I’m going to proudly patronize that business today, that can and should be taken as a statement of support for that business. (In fact, I once ended a friendship with someone who did this on the day the Chick-Fil-A homophobia thing went viral, and I do not regret it.) There is of course a chance that I had simply not heard of the controversy, but in that case, I should reconsider my support for this person or business once a friend helpfully comments and lets me know about what’s going on. And in most cases people do not do this.
So if you post about your gratitude to the NYPD right after one of its officers has once again gone unpunished for the cruel killing of a Black man, and as protests march right down the block where your coffee shop stands, that has a context, too.
I suppose it can feel like this is all a huge burden. Why shouldn’t you be able to just say what you think and feel without being held responsible for decades or centuries of terrible things done in the service of the beliefs that you are expressing? It’s true that what happened is not your responsibility, and every terrible thing done by people who believe the same things you believe is not your fault.
But that is why what you say hurts people, and that is why they warn you where your beliefs may logically lead. If what women wear has any relevance to their sexual violation, if black-on-black crime is more important and urgent than white-on-black racism, if queer people being open about themselves and their loves is so unpleasant for you, if fat people should lose weight before they are taken seriously–then that has implications for how we treat people and issues. If you take the time to listen to the voices of those most affected by these issues, you might see that these implications are just as horrifying to you as they are to us.