Saturday, February 25, 2017

Crazy-Making Cancer Treatment

I believe my doctors mean well, I really do, but their behaviour is not dissimilar from the crazy-making type of abuse wherein the abuser keeps telling a different story until the victim starts to question their own memory and doesn't know what to believe any more. I'm really glad I write everything down (and tape record it too - but secret-like because that makes them antsy).

I saw a medical oncologist last December. She was last in a long lineup of doctors who had varying opinions about my medical condition. A panel of doctors thought I should get lymph node surgery just in case cancer spread in there, but she wasn't as convinced. She leaned towards an estrogen inhibitor instead. Just one pill a day to prevent a relapse. She left me with a package of information about the drug, Letrozole, and I wandered off to contemplate my options.

Then I came across this article, which doesn't help maintain my faith in the system:
"It is distressingly ordinary for patients to get treatments that research has shown are ineffective or even dangerous. Sometimes doctors simply haven’t kept up with the science. Other times doctors know the state of play perfectly well but continue to deliver these treatments because it’s profitable — or even because they’re popular and patients demand them. Some procedures are implemented based on studies that did not prove whether they really worked in the first place. Others were initially supported by evidence but then were contradicted by better evidence, and yet these procedures have remained the standards of care for years, or decades."
On the advice of a commenter here (and former colleague), I called CAREpath to help with all the differing opinions. They collected all the medical files generated and assessed them to come up with a comprehensive pros/cons list. Literally. They weighted heavily on the anti-surgery side, with a "risk of cure" rate of 97% without any intervention. In their opinion (a different panel of doctors and nurses that's in Toronto), surgery would only have a marginal effect and wasn't worth the general surgical risks, but the hormone inhibitors might be a good idea.

They suggested I go back to the oncologist to discuss their findings in person and get a prescription for the drugs. So I called, BUT, lo and behold, I'm not at liberty to talk to the oncologist without another referral from my GP. She's the GATE KEEPER of all medical information, and none shall pass without a conversation in person. I made an appointment with her for several weeks later because, no, it's not an emergency, wherein she told me that, according to her notes (which my GP printed out for me) the oncologist said "the benefit to hormone blockade therapy with an aromatase inhibitor based on the information that we have now I feel would be very, very low with a risk of hot flashes, osteoporosis and body aches." Wha....?  My GP was convinced, from the very clear reports she was sent, that the oncologist DOES NOT want to give me hormone blockers.

But I got a referral anyway.

I finally got in yesterday, TWO MONTHS after talking with CAREpath and trying to get back in to see her. She was so glad to see me again, because, apparently TIME IS OF THE ESSENCE. Of course I should have surgery, AND I should start on the hormone blockers TODAY. Which I did. Plus lots of calcium and vitamin D so my bones don't start breaking randomly because that's a big side effect. Somehow the risk assessment went from a 1% chance of a recurrence to a 22% chance without any of my medical information changing. She just plugged in the numbers and got a different result than previously. Or something. I have no idea!!  Tra la la. Actually, I kinda think that 1% was a guess all along, and she finally actually did the risk assessment calculation - even though it just took her two minutes to do it, and she did it on her phone right in front of me. Once one doctor makes a guess, it's just that much easier for the rest to agree with it rather than anyone actually plugging in the numbers.

So it goes.

I told her that last time we met I got the impression she was opposed to the surgery but in favour of the drugs, but then my GP got the very clear impression from her notes that she wasn't in favour of the drugs at all. So this time, she wrote it down and took a picture of it to make sure, in her words, that she dictates her notes more accurately this time.


In her notes that my GP had, she also indicated that she had examined me at that first visit and described the scars as healing well, except she hadn't. My daughter was with me at that appointment and confirmed that I wore a button up shirt just for the occasion, but the doctor declined my offer to see how it all looks. She's very busy, but maybe dictating notes during the appointments would be a better idea than trying to remember what she did and said at the end of the day.

She couldn't find any paper, so she wrote on the end of the protective paper that lines the examining table and gave it to me. It's resourceful, I guess, but you'd think she'd have access to paper somewhere.

It says, I have up to 22% chance of cancer in the lymph nodes. If surgery shows any cancer, then I'd need radiation which will increase my chances of getting lymphedema and I should definitely take Letrozole. If surgery shows no cancer, then there's less chance of lymphedema and drugs might still be a good idea. Without the surgery, I should definitely be on the drugs.

She was clear at least that she might have made an error in her notes last time, and that she had changed her mind about surgery. Apparently she thought of the off chance that there was a cancer there that wasn't being treated, but left to grow, and how horrible it would be to miss something like that. She also said they like to take some of the lymph nodes, maybe half, not all of them, but there can be 5-20 lymph nodes and they like to get at least ten to sample them. I can't believe how little I know about how my body works. Last time I was told they take them all. But whatever.

I asked to see a different surgeon this time, which made everyone very uncomfortable and the oncologist and nurse gave each other looks. They really wanted me to go to the same doctor OR to go out of town. Not for the sake of my health and well being or anything like that, but because it's awkward for the doctor here to find out I'm seeing one of his colleagues. It was an effort to convince them:
He keeps giving me information that's counter to everyone else's information (like that I still need mammograms even though I have no breasts, and that I need radiation when they think they've removed all the cancer). 
They thought that wasn't a big enough deal.  
He's flippant about it all, joking around as he told me about the cancer, and he left a lot of breast tissue behind, which increases my risk of a recurrence.  
It happens. It's not really a problem. 
One more shot: 
He keeps telling me I have to get reconstructive surgery, and he's been clear that he'll try to convince me of it every time I come in. He thinks I'm simply too young to look like this! 
Ding! Ding! Ding!
That hit the jackpot. Nobody should tell you what to do with your body. Apparently that's significantly more important than leaving behind lots of potentially cancerous tissue. So now I get a referral to yet another doctor to do the lymph node surgery, which I was previously convinced I really didn't need, and now I'm told that it should have happened months ago.

She told me to call with any questions - anything at all, but that's impossible. There's a litany of guards and barbed wire fences for me to maneuver if I have any concerns about the drugs she gave me or the advice she suggested. She previously told me that I need a full physical every four months for the first year, and it's been four months, but I'm sure my GP won't know what to do at that. She's been asking me about all the ins and outs of this process. I forgot to ask the oncologist about that. It'll take another two months of scheduling and referrals to weasel my way back into her office. I'm not sure it's worth it.    

The psych descriptions all say to keep your distance from crazy-making people. I'm doing my best, but they have a way of keeping me coming back for more.


Sunday, January 29, 2017

On Silence in the Face of Alt-Facts

I think part of the reason we're swimming in crap is because we care more about being friendly than we do about spreading accurate claims. There are courses out there to learn how to detect bullshit, but maybe we also need to learn how to call something out without looking like a jerk.

The news media production of garbage is one part of the problem, but another important part is the widespread silence taken as acceptance of some claims that have no evidence to back them up. Sure there are the blindly obedient group, but my focus here is skeptical few who stand quietly by while others peddle their beliefs because it's seen as mean to question facts right to someone's face. It's seen as antithetical to forming allegiances, which has always been baffling to me. I think some of the closest friendships can be formed over a few good debates about facts and possibly differing interpretations. But people take offence when their beliefs are attacked, and all too often people are conflating their beliefs with misunderstood information.

In school, I sometimes see very academic classes question claims significantly less than in weaker classes likely because the high-achieving students have got their eyes on the final goal of a high mark, and arguing with the teacher might work against that goal. Some weaker classes can have fantastic debates because they're interested in figuring out what's right, not what will get them the marks. Polite conversation can fall into that former camp, smiling and nodding to questionable claims, then calling them out only when the purveyor has left the area. But that only ever educates the congregation instead of actually helping potential believers see the light of reason.

These days, anything that looks remotely insulting to anyone is questioned and apologies demanded (see Bill Maher's take on that), which is a problem in itself, but a bigger issue is that it's seen as offensive, as an insult, to question or scrutinize any claim made with confidence. I mean, we all hate that guy who jumps on Google whenever someone mistakenly uses the wrong word or gets an actor's name wrong in conversation. Nobody needs that level of policing. But the other extreme allows false claims to be circulated without comment.

This applies to many situations, but today I'm specifically ranting about homeopathy and questionable supplements and magical formulas. People have come out of the woodwork to tell me about the best ways to heal cancer, and it's giving me the heebie jeebies that so many believe so much with so little evidence. I completely accept that if there's a plant that people have found to have positive health effects, then absolutely let's test that claim out. But when we can't find any evidence, then we have to surmise that the effects were a mere coincidence. Anecdotal evidence has got to be held to further scrutiny, and only then the appropriate dose can be determined and the products regulated and marketed.

Part of the issue is the demonization of the medical community. Yup, Big Pharma is trying to making a buck and will market unnecessary drugs directly to consumers, and it's possible some doctors are getting a kickback for suggesting one drug over another. The field is not without potential for abuse. But that's not to say every doctor is in it for the cash grabs, and it's also not proof that the alternative health care field is free from gold diggers. They're also regular people just as likely to get sucked into the love of money. Just because they listen well and seem so caring, doesn't mean their products are healthier nor their motives more altruistic.

I have a relative who's a pranic healer by trade, and she was sure to call after I got home from the hospital to warn me about the deception in the medical profession. Luckily her naturopath suggested she get mammograms just in case because of our family history or she might have taken me to task for that as well. She believes that alcoholism is due to a past lives hanging around, and she was quite sure my mother had moved in with me after she died because I had a dream about her. She makes unsubstantiated claims that could affect people's health and well being. If someone opts for Bach remedies instead of necessary antibiotics, it could prove fatal, yet we all sit and listen and smile and nod politely. It would be too awkward to argue with her.

I've tried out some harmless claims myself. I have a skin issue that hasn't been helped by standard treatments, so many laypersons have talked me into considering coconut oil. But first I traced and took photos of the areas in need. Then I used the oil at regular times three times a day for eight straight weeks. There wasn't any difference in the size, shape, or colour of the affected area, and I'm not convinced the coconut disciples tested it so carefully on themselves. BUT had I seen any improvement, it might have prompted me to continue using it, yet I still couldn't conclude that the oil was the cause of the improvement without a control in the experiment. At the very least, I'd need two similarly affect areas to test - one with coconut oil and one with a regular moisturizer - to see if it wasn't just affected by other lifestyle choices or just got better on its own. Ideally, we'd need a few hundred people to try it out to test the effectiveness in a controlled study. One study of 34 people did just that and found it works no better than mineral oil, so there you go. As far as we know, it's not the miracle cure many tout it to be.

Recently I was in a captive audience listening to a talk about staying healthy this winter. Some of the claims were harmless and likely useful: exercise regularly and eat your vegetables. I was surprised that sleeping well and washing hands frequently wasn't mentioned; that's a curious oversight. But then a few questionable claims were made that got my attention. GMOs were lumped together as one entity that makes us less healthy, which is a highly contentious claim. But we'll let that go. Then there were big cheers for oregano oil even though there's no clear evidence of its effectiveness:
Despite the hype, there is no persuasive evidence to demonstrate that oil of oregano does anything useful in or on our bodies. And while it is popular, there is no science to support the use of oil of oregano for any medical condition. Suggesting that this herb can effectively treat serious medical conditions like diabetes, asthma, and cancer is foolish and dangerous.
But more disconcerting was the suggestion that we need supplements because food doesn't have enough vitamins anymore, and the supplements at regular drug stores aren't regulated so they can be all filler without any active ingredients. The presenter didn't say what to do with this dilemma, but offered that there are better products out there and further answers could be sought individually with her. Her evidence was that, with these better products, she's happy all the time and never gets sick. My counter: with the exception of recent genetically-determined issues, I could say the same thing and credit it to a weekly ritualistic imbibing at the local pub.

So I took the bait and asked about her claims and her sources. She's pretty convinced that vitamins are classified as food and therefore not at all regulated beyond not being harmful. Except that's wrong. They're a sub-set of drugs because they're not taken to increase caloric intake, and, as such, their labels must indicate medicinal and non-medicinal ingredients by weight. They can't legally just be filler. She countered that to check that the actual amount of Vitamin A uniform in each tablet is almost impossible, which isn't remotely true, and uniformity is actually legislated.

Her source? People she knows who work in the supplement industry. Of course my questioning all led to finding out the better product alluded to in her initial presentation, which, by some coincidence, she happens to sell. Imagine that! But hang on: even if we take all her claims as accurate, these products are under the same jurisdiction as vitamins sold at the pharmacy, so we shouldn't trust them either. The problem here is threefold: a misunderstanding of the scientific method in general, an inability to google reputable websites for facts, and an inability to understand how logic works in making a persuasive claim.

But here the thing: I have nothing against the presenter: she's a sweetheart, and I admire her desire and ability to spread her beliefs in such a persuasive way such that none of her claims were openly questioned, but actually praised. I wish I could have been so convincing with my crazy facts about climate change twenty years ago, but I still can't convince colleagues to go paperless or to at least use good-on-one-side paper, or to stop using single-use cups, or to ditch the office mini-fridges and A/C units. Maybe I'm just jealous at her ability to reach the masses. That must be it. Going paperless actually decreases physical contact with students, so it's good for your health too! Apparently that's the angle to take to be heard.

We don't like to cause conflicts, even when information is spurious. But a room full of people forced to listen to this spiel were silent in the face of very questionable information. Including me.

I also say nothing when it's someone I really admire, though. The documentary Cowspiracy claims that 51% of GHG emissions are from agriculture (scrutinized here). Every other report on emissions has much lower numbers, including the IPCC, which puts it at 24% (see the pretty graph below). It's still up there, and it's definitely something we should act on by eating way less meat, but that 51% number seems to be seriously questionable. Documentaries need fact-checking too.

But then Chris Hedges started praising the documentary and citing that number as fact. Yes, even the great Chris Hedges doesn't have time to fact-check everything he sees, and his bullshit meter must have been subdued from all the footage of suffering animals. When facts are reported inaccurately, but they help the cause, it's harder to be motivated to correct them. But it doesn't make them any less inaccurate.

I don't think we can stop some from being convinced of alternative facts, but it will help if the critical thinkers in the crowd are willing to risk being seen as impolite for the benefit of sharing accurate data. Or maybe we need to perpetuation a new type of kindness that says: I care too much to let you continue making this mistake.

Sunday, January 22, 2017

On Obama

I don't agree with everything he did, but I love the way he did it. Obama was (is - he's not dead) a classy guy. He's a role model for behaving under stress, a legendary orator, and a gentleman with his partner.  A recent NYTimes article described one daily practice of his - to read ten letters from average citizens. It described the process his staff goes through, sifting through hundreds of letters each day to find the ten and then choosing the best order for them. This was a priority for him at the start of his term right down to the final day.

Each time I teach civics, four times a year for the past many many years, I've started with the same assignment. Students choose an important issue, figure out what political level has jurisdiction, and then write a persuasive letter to the appropriate representative. And then I'd hand deliver the letters to make sure they got there in time for us to get replies before the end of term. But the replies stopped coming.

I used to count on about a third of the class hearing back within six weeks. I could count on a former MPP, a former principal, and a former mayor responding to every single letter. Now I've started suggesting that maybe one lucky student will get a reply! And I've been weaning them out - only actually delivering the more timely or impactful letters in hopes they could garner some interest, and adding my own letter on top, begging for a response. The letters in return really help students believe that the system works. But nothing. Not even a form letter.

I think I'll have to ditch that assignment. It's not working like it used to. I can't help feeling like the system, even here, is fast losing touch with the populous. The little people have to get out of the way for the big guys to do their work, and that can be a dangerous mentality. I know they're busy, but responding to the people should be a higher priority. And, by the next election, they're often voting age. They'll remember the letters they got - or didn't get.

But SNL was solid last night, opening with a pretty level-head approach to Trump ...

But then a very simple good-bye...

Saturday, January 21, 2017

On Sugar and Socialization

An Agenda discussion on sugar use is timely for me. I typically let students eat something small and healthy in class to tide them over until lunch, but, in one class this semester, I ended up having to police their choices. A few shovelled candy into their mouths before I'd tell them to put it away on a daily basis. I'd sometimes comment on their nutritional decisions even though it's not a health class, and then I'd immediately wonder if that's crossing a line. Sometimes my mom hat slips on when I should be in teacher mode. Or is that possibly a teacher's prerogative?

Gary Taubes provides a compelling argument for refined sugar being the primary cause of obesity not because it provides empty calories, or calories at all, but because it "creates a hormonal milieu that favours fat accumulation." This isn't entirely a new idea, except he goes a bit further with it, insisting that sugar has probably killed more people than tobacco. See the documentary Sugar Coated (currently on Netflix) for more thorough arguments.

My school board already removed the sugar-laden foods from the vending machines. That's a good first step, but it led to a different issue. Sugary drinks have been replaced with aspartamey drinks and fried chips with an array of baked chips, as if these are healthy choices. It's a half-measure that avoids the root problem: basic eating habits. Students can still leave the building to buy what they want for lunch, but should continue to sell them pseudo-healthy fare?

We don't want to be the bad guys that demand healthy behaviours in our buildings, so we just make a superficial attempt to eradicate one ingredient. It's not dissimilar from the recent twitter issue at my board wherein a jokey threat about students complaining about snow days included a meme of a kitten with a gun. A spokesperson for the board explained, "The best communications happen with a voice that people want to hear. If you're too dry on Twitter, then people are turned off by that, and they don't desperately want to hear that from you." It feels like we're no longer the adults setting standards of behaviour; we've become too concerned with being popular. But school is a socializing institution, and perhaps we shouldn't accept that responsibility too lightly. It's a tricky issue, however, with a slippery slope argument waiting to attack: Where will it end? What kind of moralizing forces or maybe even questionable nutritional data will teachers unleash if they believe delivering advice is permitted while delivering curriculum? What if a teacher is sold on raw-foods diet or believes in God or doesn't believe in the holocaust? What will happen to the children?

I'll just leave that concept hanging there. I'll think about it more another day. Back to sugar:

My concern with junk food isn't just with obesity or diabetes or tooth decay, but with pleasure in general. If we get candy whenever we want it, then it's no longer a treat. We've shifted to a hedonism so extreme with an attitude that suggests if something's pleasurable, then we should have it as much as we can to the point that it's no longer satisfying. It's a mentality that has adults unable to eat vegetables without dipping them in sugar-filled dips, and children starting to dip pizza! Why shouldn't we eat treats with every meal? Restraint is only exercised once we become adversely affected by the excess and not a minute before.

Life is like art. We need areas of restraint or it all loses focus and impact. Pleasures are less enjoyable if we're saturated with them. A bit of pleasure delaying isn't just good for our health, but good for our happiness. Now, am I allowed to say that in class?

Sunday, January 15, 2017

On Gender Pronouns and Peterson's Case

This is a difficult thing for me to figure out, and I'm not sure I'm quite firm on anything yet, but I've been completely fascinated by the discussions around Jordan Peterson, the University of Toronto prof who refuses to use individually-determined gender pronouns, so I'll try to narrow down what I actually think based on some of his YouTube videos, his interview with Joe Rogan, and various articles. I wrote before about some points I disagree with, but here I'll also look at where his argument has some merit. He's got some solid ideas in the mix.

First of all, the fact that I'm wary of discussing this at all, means that Peterson is on to something. He might not be entirely right about what he's doing and how, but it's always a concern when people don't feel free to counter current views. Before I knew his name, this felt like an issue that wasn't allowed to be debated, and those are always the meatiest places to explore. Why can't we question it? What's going on there? I teach philosophy and social science courses, and I get into all sorts of discussions that push boundaries: is incest necessarily immoral, or why don't we all use performance-enhancing drugs, or what if we sterilize couples right after they have one child to decrease population? Yet people questioning their gender is untouchable as a debatable topic so far. It's to the point that teens who feel strongly that they're in the wrong body are allowed significant surgery even though women in their 30s can't get their tubes tied because they can't possibly know their own minds. That's really interesting to me.

For the record, I use all manner of pronouns in class. On my seating plans, I note how each person would like to be addressed. I'll call students by whatever name they prefer; I don't want there to be any reason a student feels uncomfortable to come to class. As one student said when considering what it would be like to be in Peterson's class:
Realistically, I would be too intimidated to say anything and I would drop the course or try to find an alternative. In a theoretical world where I feel like I have the courage and agency to do anything I want, I would try to have a conversation with him and say ‘Look, this is a really important aspect of who I am and it will impact the way I interact with you and your class. I would really appreciate if you used my pronouns or my name.
I'm not sure it's wise for teachers to act in ways that provoke students to avoid learning from them. And Peterson's online lectures and podcasts are engaging. I like listening to him for the most part because he's often very precise in his use of language. He seems to always have the exact right word at hand. But there's much more to this issue.

He refers to Social Justice Warriors as a troubled group, concerned that they are aggressively dividing the world: people who support them are seen as saviours out to protect them, and people who disagree are seen as hostile or predatory. I might fit the label Social Justice Warrior myself, but I agree with his concern with equating disagreement with hostility rather than allowing disagreement to provoke curious engagement. He explains that we like to keep things simple and decide who are the good guys and bad guys so quickly that only one side is allowed to be right and then any useful discussion is lost. That's a valid concern. There are nuances to any arguments that shouldn't be discounted with the whole.


Peterson's clear that he doesn't object to a transitioning student requesting the opposite pronoun from what's indicated on their birth certificate. That's not his issue at all. He objects to the litany of recently created pronouns that demand individual attention.

He clarifies also that he has no issue with people using the terms, but he objects to being required, by law, to use them. He's referring to using 'they' as a singular pronoun or using 'ze' or a wide variety of other options. His analogy is that if someone refer to themselves as 'ze', it's like someone dating someone of the same sex, which is fine. But as soon as they demand that others refer to them as 'ze', then it's like them demanding that you double date with them, which is an infringement of your rights.  It's another level of involvement when, instead of just letting others be who they are, people are being asked to change their own behaviours in order to show respect for choices. They can't just be passively respectful or neutral; they have to be involved. It's not freeing speech; it compels speech.

Apparently some have equated Peterson's refusal to use new pronouns with a refusal to stop using racial slurs. He calls that claim intellectually dishonest, and I agree. A racial slur has its start as a pejorative term that was openly used during the oppression of a class of people, and most have been weened from our public vernacular. But words like 'he' and 'she' don't, in themselves, carry the weight of a painful social history. They're not problematic generally, but only very specifically. I understand the problem that can arise if we start giving credence to banning any words that are individually offensive. Students might end up with a list of words that can't be said in the classroom when they're present, perhaps with 'moist' near the top.

But he also makes some weak arguments here. He thinks language shouldn't be altered at all. But it's clear to me that language is alive and ever-changing. This is just a more abrupt change than the typical gradual shifts in usage.

I think this change is similar to the change that happened when 'Ms.' was first discussed in the New York Times back in 1901:
"Every one has been put in an embarrassing position by ignorance of the status of some woman. To call a maiden Mrs. is only a shade worse than to insult a matron with the inferior title Miss. Yet it is not always easy to know the facts.” How to avoid this potential social faux pas? The writer suggested “a more comprehensive term which does homage to the sex without expressing any views as to their domestic situation,” namely, Ms. With this “simple” and “easy to write” title, a tactfully ambiguous compromise between Miss and Mrs., “the person concerned can translate it properly according to circumstances."
I started using Ms. on my first day supply teaching an unruly bunch ninety years after it was first considered. I wrote my name on the board, "Miss Snyder," and an anonymous voice in the crowd of 17-year-olds said, "Oh good - she's not married. No sloppy seconds." Without missing a beat, I erased Miss and exchanged it for "Ms." and never looked back. Sometimes it's preferable for marital status to go unnoticed. It took a bit for people to get used to using the term. As it became more common, some women got angry if someone assumed their marital status, but we have to acknowledge that, if we're in the minority, then we'll have to explain it and help others understand the need for this new term. We might have to patiently explain it over and over. It's unfortunate, but I don't think that, in itself, is worth a fight. Getting it added to forms as a viable option was the big turn. It doesn't help anything to be impatiently irritable with the few catching up to it all.

Peterson argues that it's just a tiny fraction of people affected by this pronoun issue, however I disagree that the number matters. The quantity of people affected shouldn't matter if it's the right thing to do. He makes a slippery slope argument that if we accept a few new words, then there could be an infinite number of words to accept with an infinite number of gradations of identity as LGBTQ becomes absurdly long and complicated. But we can still accept a few new words. It's unlikely that the movement will want a multitude of terms, and it's certainly not necessarily the case that creating a few words will lead to creating a multitude.

But he's right that having a variety of individually determined terms won't work. We need one choice for anyone that prefers a neutral pronoun. And, like Ms., it can be used when we're in that awkward position of ignorance of someone's gender. Like Peterson, I've been finding using 'they' as a singular pronoun awkward. It occasionally is used in a plural way already, but try to intentionally use it when telling a story. It muddles up the grammar to the point that comprehension can be affected. So I'd vote for 'ze' for s/he and complementary linguistic variations for him/her and his/her. But we do have to make a choice as a country - or, even better, as a world. And rather than being required to use the new term by law in conversation, we can, like we did with the addition of Ms., allow social practices to guide the shift.


The new legislation is Peterson's primary concern. The bill passed in the House, but it still has to go through a final reading in the Senate. All parties in the House of Commons gave at least some support to the bill. At the link are the current changes that C-16 will provoke if it passes. It was debated at the second reading in the Senate on December 1st where Senator Jaffer gave an impassioned plea to pass the bill.
"The bill amends the Canadian Human Rights Act to add gender identity and gender expression to the list of prohibited grounds of discrimination. 
The enactment also amends the Criminal Code to extend the protection against hate propaganda set out in that Act to any section of the public that is distinguished by gender identity or expression and to clearly set out that evidence that an offence was motivated by bias, prejudice or hate based on gender identity or expression constitutes an aggravating circumstance that a court must take into consideration when it imposes a sentence.... 
Rupert Raj, a psychiatrist at the Sherbourne Health Centre, further describes the discrimination transgender people face. He states that 85 to 90 per cent of trans people are homeless, unemployed or underemployed. Despite this, some shelters will not even accept them until they have sex assignment surgery. Bill C-16's purpose is to provide transgender Canadians with the dignity they deserve."
She referred to many specific cases of young children hoping for a better life. Then a Conservative Senator, Don Plett, argued that the transgendered are arguing for two distinct genders when, he insists, there aren't just two. These are interesting times:
The transgender community that believes there are only two genders, their issue is they want to be the other gender. Yet, 70- plus genders will be included in this bill. This bill compels speech. It doesn't just work against freedom of speech. It actually compels certain speech.
This is the important part of Peterson's concern: the compelled language that's part of the legislation that requires he use whatever created pronoun a student determines is best for them.

Brenda Cossman argues that there isn't any compelled language as part of the act because refusing to use a new pronoun can't be seen as promoting a hate crime or advocating genocide under the Criminal Code. It's merely to stop discrimination of employment, housing, health care, etc. But in a later interview about the Human Rights Code, she clarifies that he could be doing something illegal but not criminal, so he wouldn't go to jail. "He could be ordered to pay money, he could be ordered to correct the behaviour, he could be ordered to go to training, etc."

Under the Code, he'd be responsible for "accepting requests for accommodation in good faith." There will be no questioning any serious request for accommodation. And tied to this is a definition of harassment that's a little slippery: “engaging in a course of vexatious comment or conduct that is known or ought reasonably to be known to be unwelcome." If he, or anyone, used words that a student found unwelcome, like using the wrong pronoun, it sounds like it could very well count as harassment.

So, it seems like he sometimes makes it into a bigger deal than it is - there will be no hunger strikes in jail - but it's also not nothing. He's been served a couple letters from the university already. However he likely did his entire protest a disservice by being imprecise and grandiose when the facts, clearly explained, could be enough to sway people. It could enter a realm of the ridiculous given the kind of accommodations we're beginning to grant in schools (like scribes for the literacy tests). If little Johnny prefers to be called "John the Shiniest in all the Land," and I insist on plain old "John," then could this be grounds for harassment if he feels the lack of title is vexatious? This part of the code isn't new - it's not part of C-16, but it certainly takes on a bit of a different flavour now that using the wrong pronoun can be considered harassment. And I think this is where Peterson should be given an audience willing to hear him out.

Rosie DiManno further justified Peterson's concerns:
Just last week, the commission issued a statement clarifying its position: Refusing to refer to a person by their self-identified pronouns could constitute gender-based harassment; refusing to refer to a transgendered person by their chosen personal pronoun, matching their gender self-identity, will likely be considered discrimination when it takes place in an arena covered by the Code, including employment, housing and services such as education.... 
An individual who defies the jackbooting of vocabulary fascists, who won’t comply with preferred pronouns — and to be clear, Peterson does not stand accused of doing this yet; he’s merely declared he will not do so — can find himself, herself, themselves, stripped of a job, fined, have assets seized and wages garnisheed, or be forcibly trotted off to some kind of language gulag where they can be retrained as per the ideological gospels.
People attacking his claims need to take a closer look at what this law suggests and any further implications.


Peterson explains that what someone finds upsetting can't be the sole criteria used to determine if an action is objectionable. I agree that our young charges are becoming increasingly thin-skinned and anxiety-prone. If we continue down this road, we could have far too many good people charged and fined or at risk for job loss because they're sarcastic, oppositional, or just plain forgetful. And students suffer from over-protection. To reduce the effects of a trigger, according to CBT methods, we need to be exposed to it over and over in a safe environment, not be allowed to avoid it completely and forever. I believe the rise of trigger warnings actually fosters the development of anxiety.

He discusses Mill in a cursory way, mainly in relation to Marx, but I'd expect him to be all over On Liberty. That essay completely supports his position that harm and offence are two categorically different things that must be treated as such.

He takes a page from Freud's Civilization and its Discontents when he describes the development of socialized people: The very process of learning to live with others necessarily builds but also destroys some of our individuality. We can't have norms without some marginalization. He illustrates this with children playing games: if most want to play hide and seek, and a few want to play tag, then the tag players will be marginalized this time. We can't just be individuals refusing to acclimatize to social norms because we want to be true to ourselves because then society won't work productively. It's unfortunate, but we do have to give in a big to the ideas of the crowd.

He continues (paraphrased):
To be less afraid, we can't make the world safer, but we can break fear into bits to make it easier to confront the fear. It doesn't reduce anxiety, but it makes people braver and better able to cope. Universities should arm students with arguments, engage them in intellectual combat - it's better than real combat. University is a place to be confronted by horrible ideas - history is a bloodbath. Stay home to be safe.

But then he goes on to blame the rise of trigger warnings in the 1990s on women studies outright. I think it fits more with the general extremism born from a desire for simple solutions. We don't want to talk about the complexity of experiences, and we don't want to deal with anything uncomfortable. But we must.

ON BEING INTERESTING: Obsessions with the Self

Here's where the discussion gets a little uncomfortable. Peterson suggests our concerns are creating a generation more prone to narcissism in which, "only the oppressed class can speak for themselves; it gives them privilege because of their marginalization," and I have some similar concerns. Yes, each generation lambastes the previous one all to bits, but that doesn't prove this isn't actually a problem.

With respect to the growing number of non-binary and transgendered students, I sometimes wonder if we're fostering a set of behaviours that wouldn't happen at nearly the rate otherwise. Were there that many students quietly suffering a decade ago, or is this, just maybe, a bit of a trend?

I've seen many different ways students demand greater attention than others. If I have a student that has an accommodation that allows for double the time on tests, and I allow everyone as much time as they need, then that accommodated student will sometimes get upset. It doesn't matter that many students don't have the time or money necessary to be formally tested. And it doesn't matter that the student with documentation is getting their accommodations met. It becomes very clear that that's not the point. They don't want to ensure that they're needs are met as much as that they have more than everyone else. They want something extra. Teenagers often really need to feel special, and we seem to be provoking that desire rather than quelling it.

To what extent are some cases of gender identity a matter of being interesting? Currently in some places, it's highly rewarded. People are given extra thought whenever a pronoun is needed, and, in some parts, they're automatically part of a group that's very welcoming and supportive. About twenty years ago I had a student who said, off the cuff in class one day, "I wish I were a lesbian. They're such a tight circle, and I'm not allowed in." Clearly it's not the case everywhere, but where there is a highly supportive environment, is it possible that it fosters 'wannabe' behaviours from people who desire to be at once unique yet also part of a strong community? Are we normalizing a behaviour that wouldn't be growing as quickly otherwise?

Mark Lilla, Columbia prof, thinks the problem is an obsession with identity.
Diversity as a social goal and aim of social reform is an excellent thing. But identity politics today isn’t about group belonging; it’s about personal identity. From the ’70s into the ’90s, there was a shift in focus from group identity to the self as the intersection of different kinds of identities. Identity became more narcissistic and less connected to larger political themes. For many students, their political interest and engagement end at the border of how they’ve defined themselves. It’s extraordinary how much time and thinking they devote to exactly what they are as the subtotal of other identities.
And people are railing against this claim. But a recent study found a dramatic rise of "Fame" to be most the common value on display in shows geared to tweens. And these ideas are not dissimilar from what Charles Taylor has noticed as a shift in the philosophies of our times beginning at the enlightenment. And Hannah Arendt wrote about it at length as a reaction to what's favoured by elites starting at the turn of the century:
Deprived of political rights, the individual, to whom public and official life manifests itself in the guise of necessity, acquires a new and increased interest in his private life and his personal fate.... What the mob wanted was access to history even at the price of destruction.... The mob, and not the elite, was charmed by the "radiant power of fame" and accepted enthusiastically the genius idolatry of the late bourgeois world. In this the mob of the twentieth century followed faithfully the pattern of earlier parvenus who also had discovered the fact that bourgeois society would rather open its doors to the fascinating "abnormal," the genius, the homosexual, or the Jew, than to simple merit.... The members of the elite did not object at all to paying a price, the destruction of civilization, for the fun of seeing how those who had been excluded unjustly in the past forced their way into it....The belief that everything is possible seems to have proved only that everything can be destroyed.  
Of course we should accept people dressing as they like and inhabiting all aspects of gender they find comfortable, but to what extent are people altering their forms as, sub-consciously perhaps, a means to become interesting. There's a whole generation of teens and children who are guinea pigs to a new mentality that we should heed their perspective about their own pre-pubescent bodies at any cost. Like earlier studies on cosmetic surgery, sex change operations don't always decrease body dysmorphia. It's complicated. But it won't get any better if we're too politically correct to question the parameters of this burgeoning ideology. I'm not a typical anti-PC type because much of the movement towards correct behaviour is really a matter of being polite and respecting one another. But it shouldn't be so severe that it prevents people from asking some difficult questions.

Here's something possibly even more controversial to say aloud. It's a bit off-topic in general, but it fits with the identity obsession: There's a rise of the number of students with anxiety, OCD, depression, etc. I'm not saying they're faking illness to be special, or that it's all mind over matter, but that somehow a society that nurtures illness might end up getting more of it. It alters people's constitution to be open to illness of any kind. When I was university and I'd get sick at the end of each term, it was like my body knew it could. Or there was that time when a partner's horrible flu made him unable to get out of bed, but somehow, when I succumbed, I was able to still make lunches and get the little one to daycare. My brain knew at some level that staying in bed wasn't an option. This isn't an uncommon mom/dad scenario that likely precipitated the stereotype of men being babies when they're sick. It's because they can be. Similarly, if we offer the idea that a child is anxious, and they learn they can decrease those feelings by avoiding a trigger completely simply by referring to their anxiety ("I can't do presentations, and I need double time on tests because of anxiety."), then that behaviour has potential to increase in frequency. Now some tests are written over days, and everyone gets gum and treats. It's not necessarily a bad thing to help kids relax for a test, but this wave of concern for each special snowflake is making it harder for them to learn how to work hard, to handle insults, to tolerate difficulty, to pull themselves together in public places, and to push themselves to the end. It might be similar for gender dysphoria.

The line between something being impossible, painful, or abusive and something being difficult, taxing, or uncomfortable has been blurred beyond recognition. I believe a focus on the self is at the heart of all of these trends. "How do I feel? How should I be accommodated? What's going on inside of me?" has become an overarching concern replacing, "What's my place in society? How can I help or add something useful to the world? What's going on beyond me?"

ETA: After seeing this document, I'm not so comfortable openly agreeing with some of Peterson's views, but that's just the point. We should approach everyone's arguments critically, looking for the bits we supports and parts we reject and developing arguments to support our conclusions. Writing him off altogether isn't the solution. Thinking about each claim he makes is the only way we can work our way through this mess.

Saturday, January 14, 2017

Eco-Hypocrites: Flights of the Anti-Flyers

I was just contemplating my own hypocrisy when I came across this NYTimes Op Ed on hypocrisy. Likely I'm not the only one in this position of explaining away, or coming to terms with, behaviour very contrary to my ethics. I've written before that nobody should board an aircraft for a luxury trip, and then I took my family to Costa Rica over the break.

The Op Ed discussed a study that shows why hypocrisy is so irritating:
"We contend that the reason people dislike hypocrites is that their outspoken moralizing falsely signals their own virtue. People object, in other words, to the misleading implication.... the principal offense of a hypocrite is not that he violates his own principles, but rather that his use of moral proclamations falsely implies that he himself behaves morally."
At a recent Christmas party when people spoke of the many trips about to be travelled, I asked, "How do you justify the trip to yourself knowing the damage it has on the environment?" Now, before you look at me sideways, I meant is as a legitimate question regardless how inconsiderately I likely worded it. It's something I'm struggling with, and I really want to know what others do. Is it denial? or rationalization? or apathy? How do we all act in ways counter to our own long term survival? But, of course, it's taken as a judgment. The main reaction was "You're going on a trip, so now you can't talk!"

This is only correct in part. It's correct in terms of offering a judgment of others, which is what the authors of the Op Ed are getting at. We can't rightly say to someone, "You're a bad person for wearing shoes in the house," while we currently have our shoes on in the house. That's a problem. But I'm not claiming that people are bad, but that certain actions are a problem that have to be dramatically reduced. It's similar to the reaction (often gleeful) some people have when a grammar teacher makes a grammar error. It doesn't mean that we shouldn't promote good grammar despite our own fallibility.

My rebuttal to the comment was, "Sure I can!" because we all need to stop travelling for leisure. Including me. I feel horribly guilty for taking a trip, and I really want to know how others manage those feelings when they're making travel arrangements.

There's another view out there that people are upset by claims of moral action because it forces them to reassess their own actions comparatively, and they're angry when they think they fall short of appropriate or admirable behaviour. That's actually pretty much the same thing, but it has a difference feel to it. It puts the problem in the hands of the audience's reaction to factual statements like, "I don't own a car, or I'm vegan." They feel their conception of themselves as moral human beings threatened. The authors of this view recognize that it's often an unintended implication that's read into the statement of concern. It's not the speaker behaving falsely, as the speaker can be well aware of their own flaws, but the audience who assumes it's bragging rather than concern.

The Op Ed author suggest that admitting wrong-doing helps. I do this already when I talk about the morality of eating animals because I've personally focused on reduction rather than strict restriction. But I intend to remember to do this in all cases:
"To further test our theory, we asked people to judge “non-signaling” hypocrites: those who hypocritically condemn behaviors they engage in, but who explicitly avoid implying anything virtuous about their personal behavior — by saying, for instance, “I think it’s morally wrong to waste energy, but I sometimes do it anyway.” We found that people judged these non-signaling hypocrites much more positively than they judged traditional hypocrites. In fact, they let these non-signaling hypocrites entirely off the hook, rating them as no worse than those who engaged in the same bad behavior but did not condemn others for it."
But I'm not going to stop talking about doing everything we can possibly do to slow down climate change. As Mill said,
Human beings owe to each other help to distinguish the better from the worse, and encouragement to choose the former and avoid the latter. They should be for ever stimulating each other to increased exercise of their higher faculties, and increased direction of their feelings and aims towards wise instead of foolish objects and contemplation. 
We think we have a right to everything we want to have or see or be, and that doesn't just damage our planet, but, I'd argue, it does a number on our ability to ever be content.

How DO People Cope with the Guilt, and Why Did I Finally Break?

I fell deep into rationalizations.

I first agreed to my daughter's request for a trip because I was terrified of getting surgery, and I thought an upcoming trip would help distract me (because flying is more scary for me than being cut open!). I was right. It was a useful distraction in the weeks leading up to my operation. None of the things I worried about actually happened on the trip, but there was a volcano that grounded all planes for the two days before we were scheduled to leave. I didn't even know to worry about that.

But once that came and went, then it became a promise to my children (which shows a lack of the skill of measurement, going for a short term gain that provokes a long term loss). Somehow it seemed better that it was for them and that I wouldn't actually enjoy it. I hate travelling and hot climates. I don't really understand standing in line after line in a crowded airport in order to go to a place with the temperature of a Canadian heat wave, something I typically barely tolerate, in order to have fun or relax constantly surrounded by people without the hope of time alone for eight solid days. I'm really good at having fun and relaxing in my own home all by myself!

And I convinced myself it's okay because I do it so much less than many (but way more than far more others, so that falls apart too). It's the same way I rationalize eating turkey at Christmas. It does help to do it less, to consider it a rare treat, but it helps more not to do it at all.

And I figured it might be okay because we booked an eco-lodge. The place was lovely, and I asked a ton of questions about how they operate it. They considered going off-grid, but decided it wouldn't make sense to since Costa Rica runs on 100% renewable energy. They catch rain water and dry laundry (they did all our laundry) with the sun in a greenhouse-type set-up, collect sewage in a biodigester, and compost all food waste. All the food was local, the water was solar heated, and they cooled the room with fans and thick curtains rather than A/C.


BUT, it was all-inclusive with meals already prepared for us as we arrived at each meal. I told them ahead of the trip that we had no allergies or aversions and didn't claim vegetarian status because I wanted to eat how they eat, but, really, they fed us how typical tourists might want to eat. It was a ton of food and lots and lots of meat. After a couple days, my kids ignored desert and asked instead for a plate of raw vegetables. The owners of the resort laughed at our unusual request - and at how excited we all got at some broccoli at the side of our plates one night. I hate seeing food go to waste, so I finished my plate and then went to work on the kids' leftovers. Despite hiking through the jungle every day, I managed to gain weight. It was delicious, but we could have managed on portions half the size. Resorts are all about luxury and an expectation of gluttony seems to go along with that.

My modified swim wear.
And the trip became a trial run for wearing tank tops and a bikini on the beach surrounded by total strangers a mere six weeks after a double mastectomy. It was far too hot to be discrete and cover up any more than the bare minimum. As soon as we got to our room, we'd all strip down to our skivvies. The heat forced me to come to terms with my new body shape, and swimming in the ocean helped my arm mobility.

Most striking to me, was the social rewards mounted on people who travel. I was congratulated for planning a trip and taking it. People wanted to hear all about the plans and the results. It's hard to avoid such a normalized behaviour or consider it a luxury when, in some circles, it's presented as a necessity.

But none of this erases the fact that jet fuel creates as many GHGs in two hours per person on the flight as a typical person creates in a year.

A Better Way to Relieve Guilt

The best way to ease guilt is to do something about it: in this case to buy carbon offsets. The David Suzuki organization has a step-by-step guide explaining the rationale behind purchasing the highest quality offsets, but it still takes significant effort to find a good company for investment. Many airlines have offset calculators with preselected companies (which might use a closer look) or suggested companies. Those two calculators gave very different amounts for the identical destinations: $60 for Air Canada and $20 for Delta. But really, that's a drop in the bucket for the cost of the trip. And it doesn't entirely alleviate my guilt. It's still morally wrong to take more that you need in a way that deprives others in future.

Instead of using the calculators to try to find some kind of accurate amount, I went old school - back to my churchly days of tithing. Sending ten percent of the price of the flight to an environmental organization that preserves forests or created renewable energy or opposes fossil fuel pipelines might be a good practice to begin implementing: a personally imposed carbon tax on harmful practices. It's a small price to pay for some semblance of peace of mind for those who can afford the luxury of a destination vacation.

ETA - And here's a video my son made of the trip:

Sunday, January 8, 2017

On Boyden's Questionable Ancestory

It's hard when we find our heroes as fallible as the rest of us. Boyden, the prize winning indigenous writer found to be not so indigenous, is taking a hit now. Some, like Aaron Paquette, think Boyden can't claim status without having endured the hardship that went with being raised by generations decimated by legislated policy. It's cheating to take the perks without the privations. Others, like Wab Kinew, think Boyden should make amends, but then could be part of the wider circle. (Both of those pieces are beautifully written and deserve a look.) I'm more interested in the drive to assimilate with the victimized. When Rachel Dolezal did something similar, she was duly trashed. I tried to understand her position as well. Yet, through reading Boyden's books, I've attributed greater depth, thoughtfulness, and generosity of spirit to him. People don't want to casually toss him aside as a wannabe.

My ancestors were the invaders and some were likely the invaded who assimilated and survived: the Gauls and Normans and Vikings and Saxons. Later on, those Norwegians, French, German, Scottish, and Irish who wanted more for themselves or who wanted to escape persecution loaded on boats for the New World. New to them that is. They came centuries after the the French made allegiances with the Hurons, about the time the British decided to deal with the "Indian problem" by creating the Indian Act, a document of invasive regulations that enabled the residential school system to open and flourish. Just like their forefathers, they invaded and forced assimilation on the people because they had bought into the need for the purity of a single group. It's what we do.

I'm a mix of all those cultures, but I don't hold allegiance to any, not even to the line of Alsatian Mennonites that gave me my surname. It's so far back, I feel divorced from those cultures, orphaned and adopted as Canadian, whatever that is. I'm sometimes jealous of newer immigrants with clear ties to a people. And of the Indigenous Canadians. We were unsuccessful at taking their culture from them, try as we did; their culture is strong and formidable. But, as much as John Ralston Saul would like to suggest, it's not our culture.   

I grew up in a good sized house on a large lot that backed onto a beautiful maple forest, with two professionals as parents, happily married and financially stable. Some quiet alcoholism, occasional temper tantrums, and likely undiagnosed Aspergers were the only flaws in an otherwise storybook scenario. My pain is not like theirs.  

So I can see the draw. I can understand wanting to claim a history that isn't quite accurate.

Primarily, it's embarrassing to be aligned with the invaders and to acknowledge how much we've benefited from the efforts of our ancestors to exploit or destroy many peoples. It's a burden we have to accept and acknowledge in practices like naming the land we're on when we have an audience. Michael Moore's Where to Invade Next shows how German students learn to cope with the horrific actions of their country's past. We could use more of this in our own lives to help us come to terms with our collective guilt:

Nothing makes you aware of your country like leaving it. I was just in Drake Bay, Costa Rica where the locals told me of their high schools that look like prisons, with one teacher who teaches every subject for each grade. People who want a good education have to move away. The man running our resort was lucky enough to have an aunt in a city, and he moved in with her at 14. I told them that's just like Canada. We have areas where there aren't enough people for a good school, so kids are sent away from home. But our country is massive by comparison, so they're sent really really far from home to cities like Thunder Bay. They're often just boarded rather than actually raised and cared for, and they sometimes end up in trouble with alcohol or sometimes they go missing and are found at the bottom of lakes. It's absolutely tragic. They were shocked that happens in Canada too. They had no idea. (Some of the American guests there had no idea who our current Prime Minister is, though. So maybe we're just not considered in general.) We're not just guilty of past actions; we're still struggling with current issues.

Secondly, I understand the draw to the victimized. Hardship gives people honour just for existing, for soldiering on. I saw that with breast cancer, how people thought me brave just for continuing to do whatever would give me best chance for a long life. A difficult past has a curious elevating effect on a person's status with little necessary effort to develop personal character worthy of honour beyond a will to survive. It's a too easy shortcut to glom onto a surviving group to claim that status. Currently, there's an access to extras not granted to the dominant class, not granted for a reason because of everything else available to us, but I don't think that's what either Boyden or Dolezal were about. It's a side effect of their actions, but unlikely to be the main motivator. They couldn't know that they'd get the awards and grants when they told those first few lies.

We're sometimes envious of the attention given to the sick or traumatized. I'm reminded of the Robin William's film, World's Greatest Dad in which many teens suddenly claimed they were best friends with a recently deceased student who didn't really have friends because he was such a horrible person. It's not uncommon to attach ourselves to the middle of an event and claim a place closer to the suffering person because we feel at all. We want our emotional experiences with the incident recognized. It's interesting that it only happens when the suffering are at the centre of the fray rather than ignored at the outskirts, as most are. The Indigenous likely had fewer people loudly insist they're 8% native a few decades back when that admission could have a more negative effect.

The William's film also beautifully depicts how someone can get sucked into a fabrication. The dad, a struggling novelist, doesn't want his son found strangled in an autoerotic asphyxiation accident, so he reties the rope around his closet bar and writes a suicide note, which becomes his first published piece. Soon he's "finding" novels the teenager left behind. It's the only way he could get his writing acknowledged. He didn't have malicious intent, but the effect wasn't entirely harmless. Boyden's books stand on their own merit, but would he have gotten a foot in the door of the publishing world without his chosen identity?

Finally, claiming status gives individuals a people, an entire culture where they feel some sense of belonging. We're shifted to such an independent focus in society, bereft of community, that being a mutt, a mix of many cultures, can be profoundly isolating. Changing a few details of our past in order to be included in a group can be very enticing, which can sometimes be too hard to override with more moral reasoning.

I completely agree with Paquette's notion that it's not acceptable to just attach yourself to a group without enduring the challenges the group survived, but I love the flavour of Kinew's article that suggests people can be adopted and accepted as honorary members if they're worthy of the honour. We need a sense of belonging in this world right now more than we need to clarify our borders. But we also need to live authentically, honest with ourselves about who we really are and where we came from.  

Monday, December 26, 2016

On Cancer Doulas

When last we left our heroine, she had just had an invasive tumour removed, but found out there could be traces of cancer left behind. She was left to choose between surgery, radiation, tamoxifen, or nothing. Let's see what she does next...

I had never heard of Healthcare Navigators before, and it seems they don't exist as much in Canada as they do in the more expensive and privatized healthcare to the south (except for Indigenous needs), but they're becoming more of a thing here. In Ontario, some hospitals have them, and we're apparently leading the way to integrating a navigator even before an official diagnosis, but I didn't encounter any and don't know how to find one. Believe me, I've looked. If you're pregnant, you can get a doula to help you through all the issues that come up when you're at your most vulnerable and being bombarded with contradictory information. Cancer is very similar. It's just way too confusing to navigate alone. I'd like one that comes around to appointments with me, not one that stays in the hospital. Without a partner, I've had to rely on my barely-adult children to come to my appointments and try to make sense of everything. They have exams to study for and essays to write. This isn't a burden I wanted them to take on, and there's so much I would have liked to have known.

It would have been great if someone mentioned shaving my pits ahead of time. It's not something I ever do, and they put surgical tape right up in your pits, then send you home with arm exercises. I couldn't raise my arms without ripping out the hairs, and I had to get my poor children in there with tiny scissors freeing me from my own physical constraints. It also would have been great to have someone suggest I DON'T do both surgeries at once. Yes, it's fewer times under anesthetic, but it's a longer time, which can be worse. And the after care for one (plenty of walking after the oophorectomy) was contraindicated for the other (bed rest after the mastectomy). Now I know, but it's useless information to me at this point.

It would also have been amazing to have someone knowledgable there to answer my questions. I ended up back in emerge when one breast swelled to about half a boob size. After four hours, the hospital assured me that I don't have an infection, and that's all they know to look for. They sent me home to google for information. I can only guess that it was a sudden build-up of fluids, but we're still not sure. It went away before I could get in to see the surgeon. I have weird pains on one side now, but I have no interest in getting it checked out. What's the point?

I've been going to my follow-ups alone, and it's even more awash with conflicting advice now that they know I actually had cancer. No doctor seems to have a clue what other doctors do, and nobody has their head around the entire process. Here's a bit of a mild horror show - more frustration than fright. My main surgeon was confident that the plastic surgeon could just move my belly fat up to make new breasts, but the plastic surgeon was quite certain I didn't have nearly enough body fat for that. Implants were the only option, and I bowed out of that and let the surgeon know I would just rock a flat chest. He told me he wouldn't stop trying to convince me because "You're too young not to get them redone." Hmmm.  Does this mean I can't be an attractive woman with a flat chest? Does it mean I'm too young to spend my time and energy pursuing my own interests instead of pursuing a mate? It struck me as a slightly insulting comment, but I ignored it. He's likely about my age, but he was raised in a different time. I try to be forgiving.

But then after surgery, when I saw the topographical roadmap left on my chest, he told me it always looks horrible. It just does. Then I spoke to a genetics counsellor who told me he likely left extra skin behind for the plastic surgeon to use in reconstruction. I asked her to set me up with a therapist who specializes in this kind of thing, because I still haven't been able to look at myself in the mirror topless. It's really gross.

But, What. The. Fuck. If that's the case, then this is when I needed an advocate to verbally bitch slap the bugger. After that nightmare after surgery, I have no intention of going back under to get things cleaned up. I can accept that the surgery is just going to look like crap (despite the many beautiful pics of women who are living with a flat post-op chest online), but I have issues with the possibility that he deliberately ignored my decisions and created a mess unnecessarily. But I was too sore and tired and scared to complain.

I saw my gynecologist who said my ovaries were healthy. I asked her about the options available for my lymph node issue, and she was surprised tamoxifen was one of them (to reduce estrogen for my estrogen-loving micro-tumour). She said usually people come to her to get their ovaries out so they can stop taking tamoxifen . But when I saw the genetics surgeon, she seemed to think that letrozole was a better option for post-menopausal women. There are tons of side effects, and the most concerning to her was loss of bone density. She said I could take it for a while to see if it helps, but how do you tell if it's helping? She also suggested a physical every 4 months for two years, followed by one every six months after that. But with whom? My family doctor's not going to know what to look for. Other than that, lots of fresh fruits and vegetables and easy on the caffeine and alcohol.

Then my surgeon sent me to a radiologist for a consult. The radiologist was confused why I would have been sent there. He told me radiation is only used to shrink a tumour. If they don't know if there's a tumour, then they don't randomly radiate the area. But if there's cancer in the lymph nodes, which might have sucked up some cells from the invasive tumour, then they'll likely do six months of chemo followed by radiation because it'll be travelling everywhere. If I wait, and just check for lumps, and they find it later, then the chemo and radiation treatments will be longer and more intensive. The surgeon told me I'll have to do yearly mammograms despite not having breasts. The radiologist told me they don't do mammograms without breast tissue present, and I'd have to have yearly ultrasounds. Either way, radiation isn't an option at all right now, and I used a half-sick day unnecessarily. When all the doctors say each other is wrong, how can you possibly know what's right?

Before I left, I asked him about the math of it all: Previously I had a 90% chance of getting breast cancer, whereas most women have a 10% chance. But now I have a 1% chance of having it in my lymph nodes, so isn't that something to ignore?? I mean, they don't suggest surgery to women with a 10% chance, so why would I get surgery? He said it doesn't work like that. I have a 1% chance of a recurrence of cancer, which, apparently, is very different. Something like that.

So now I have even less confidence in the general surgeon because he sent me to a specialist who didn't think I should be there. Then the radiologist, whom I JUST MET told me he ended up presenting my case to rounds since neither surgeon who first discussed it, nor my gynecologist showed up. Wow. Anyway...  Luckily the radiologists did show up or nobody would have been able to tell me what happened there, and I wasn't really supposed to even meet with him. The four surgeons who looked at the case all said I should get the lymph nodes removed, BUT, the radiologist told me that I should keep in mind they were "speaking politically." Looking at my file, without me in front of them, they saw a risk involved in doing nothing, so they leaned to the side of doing something despite the risk of lymphedema (which is a 1% to 15% risk depending who you ask). Apparently the worst case for that is wearing a compression bandage on my arm forever, but I don't really believe anything anymore. I'm sure I can find an even worse case scenario. The radiologist and genetics surgeon and regular surgeon all leaned towards doing nothing because they saw me all skinny and healthy in front of them. I'm a low risk for a recurrence. But it's four against three.

Unfortunately, the radiologist couldn't tell me what the lymph node surgery would be like, except that it should be far less invasive and take a fraction of the time. So I have to go back to the original surgeon to find out for sure. We'll see if I have enough balls to complain a little about it all. Probably not. If it's an easy surgery, and I can time it to line up with March Break (so I don't have to deal with the very different nightmare of planning weeks of lessons and then fielding daily e-mails from the supply teacher), then I might go for it. I'm too curious to just leave it be without knowing for sure.

What a gong show!

On Social Control in Universities

Chris Hedges has concerns with Trump's impact on intellectuals:
Trump and his Christian fascist minions, sooner than most of us expect, will seek to shut down the small spaces left for free expression. Dissent will become difficult and sometimes dangerous. ... The Trump administration will hand our Christian jihadists a platform to champion a repugnant religious chauvinism that fuses the symbols and language of the Christian religion with American capitalism, imperialism and white  supremacy.
He spoke with historian Ellen Schrecker, author of several books on McCarthyism, who says this has been in the making for the past four decades since America has been "cannibalized for profit." They spoke mainly about the Powell memorandum launched in the 1970s and the current rise of watch lists targeting leftist academics for discrimination against conservatives or for criticizing capitalism, an act allegedly committed by Richard Wolff, a Marxist economist on the list. Left-leaning alternative media is also being targeted.

Schrecker refers to Martha Nussbaum's discussion of the importance of the humanities to give us a taste for the other through literature, history, and sociology. They think it makes you a better person and citizen when you put yourself in another's place mentally, but the pressure on people to focus on the self is very strong, even from parents who dissuade students from degrees in the humanities in order to focus on more lucrative professions.

Hedges ends with a plea for us to hold fast to
values of compassion, simplicity, love and justice....Tyrants have silenced voices of conscience in the past. They will do so again. We will endure by holding fast to our integrity, by building community and by spawning new institutions in the midst of the wreckage. We will sustain each other. Perhaps enough of us will endure to begin again.
This article is timely for me because I recently watched Jordan Peterson talk about the demise of universities, but from the completely opposing side. [He gave a 3-hour interview about many topics - some I agree with entirely, so I'll get to more of them another day.] A prof at U of T, he's been given written warnings after refusing to use alternative gender pronouns upon request. His refusal is in part to make an important point about freedom of speech. His concern, and here he runs parallel to Hedges, is that our speech is being micromanaged in a way that could be dangerous if allowed to continue. He's also concerned with the lack of a cultural history in the populous. And, like Hedges, he praises Alexander Solzhenitsyn's Gulag Archipelago for its compelling story of the inner workings of the Soviet Union. They're both concerned with the erosion of civil liberties, and Hedges takes from Solzhenitsyn's book that,
"unless these informants on the streets, in the prisons and manning our massive, government data-collection centers are disarmed we will never achieve liberty."

But that's where the similarities end. Peterson seems to take from Solzhenitsyn's book that horrors of the time were entirely due to Marxist ideas, which he further conflates with anything left-leaning, and deduces that therefore the problem with the universities is the leftists who are all Marxists, who are all unwittingly (or dimwittingly) promoting the horrors of the Gulags. The fact that Trudeau said anything nice about Castro makes him suspect in Peterson's eyes.

The atrocities of the Soviet Union might be pinned on Lenin's revolutionary actions, but Marx and Lenin had marked differences, primarily in their view of control over the people. Peterson sets up a straw man when he suggests that the Marxists all think it didn't work with Stalin because he was a monster, but it could work if they were in charge. And then he argues that we would all end up as brutal dictators given that much power. But he misses the point. Marx didn't want an authoritative body to be in charge; he wanted workers to be in charge of the factories: "to centralise all instruments of production in the hands of the State, i.e., of the proletariat organised as the ruling class." His writings promote anarcho-syndicalism more than what we currently call communism.

Peterson thinks people like Marxism because it's compassionate, which is nice and all but doesn't work with a large group because we can't treat one another as kin once society gets too large. So it's misguided to have equality of outcome. All positive motivation renders the world unequal. He's on the conservative side of this meme below in terms of handouts, expecting the little guy to be motivated enough to negotiate the solution shown on the right. But, as far as he's concerned, if we just set it up like in the right image, then nobody will be motivated to do anything.
Here's a little history of this meme.
So, if I understand him, if we ensure that everyone has what they need, compassionately, then all progress will end. Here's Marx's response to that claim,
It has been objected that upon the abolition of private property, all work will cease, and universal laziness will overtake us. According to this, bourgeois society ought long ago to have gone to the dogs through sheer idleness; for those of its members who work, acquire nothing, and those who acquire anything do not work. The whole of this objection is but another expression of the tautology: that there can no longer be any wage-labour when there is no longer any capital.
Peterson's analysis implies an underlying premise that the poor don't work hard, which basically suggests that the rich and poor are divided entirely through their efforts. But it's clear to me that there are elements of luck and mass obsession and exploitation of others that lead some to become outrageously wealthy with relatively little effort. And there are many working a variety of jobs but just barely surviving. He's concerned with the lack of progress that would entail with equality of outcome, but then later gets all Taoist. But progress is largely antithetical to the Tao. Curious. He's a little hard to pin down.

Furthermore, Marx insisted that "Communism deprives no man of the power to appropriate the products of society; all that it does is to deprive him of the power to subjugate the labour of others by means of such appropriations." He wanted to end the exploitation that enabled the few to become exceedingly wealthy off the backs of the many, not to end the profit that comes from innovation.

Peterson rails against the left, but left and right are a slippery dichotomy. In some regards, Marx is not that different, ironically, from John Locke who some call the father of capitalism. Marx wanted to stop the exploitation of the factory workers by the managers, and Locke wanted to stop the exploitation of the peasants by the aristocracy by allowing them to own the land they worked:
The labour of his body, and the work of his hands, we may say, are properly his. Whatsoever then he removes out of the state that nature hath provided, and left it in, he hath mixed his labour with, and joined to it something that is his own, and thereby makes it his property.
The father of communism and the father of capitalism and Adam Smith and Aristotle and many others, all implore us to compassionately reject exploitation of the masses and most of them want to ensure the people all have the basics to thrive. Here's Aristotle:
It is manifest therefore that a state is not merely the sharing of a common locality for the purpose of preventing mutual injury and exchanging goods. These are necessary preconditions of a state's existence, yet nevertheless, even if all these conditions are present, that does not therefore make a state, but a state is a partnership of families and of clans in living well, and its object is a full and independent life.
Back to universities. Peterson thinks the leftist ideology boxes people in. It controls and suppresses the marketplace of free ideas. He includes in this Woman Studies Departments which all dangerously foster revolution with a false anthropology that claims there used to be an egalitarian paradise before patriarchal oppression. For evidence he implores us to look at any Women Studies website, but his specific concerns seems to be that they promote class-guilt in their belief that we're responsible for the sins of our past and that they believe the oppressed deserve special compensation. [I'll dismantle that bit another day.] Because of the Marxism of the universities which is leading to the "slow creep toward social control," he thinks universities do more harm than good. We can educate ourselves online better now. Wisdom has moved outside the universities.

And then he spent many minutes applauding the reach of his own monetized videos and possibly being convinced by the interviewer to shift to a podcast model for an even wider audience, and it all started sounding a bit like an infomercial.

But then he took a decidedly left-wing view and argued for limits on the profits to be made by managers in a university. He notes the proportion of funds going to administration has massively increased and that administrators are essentially stealing the future earnings of the students who aren't allowed to declare bankruptcy on their student loans. Or, one might say, the proletariats of the system are creating indentured servitude. Interesting. He adds a capitalist twist to it with a concern that this burdens citizens at a time when they're most likely to take entrepreneurial risks. For a minute there, it almost seemed like he was forming a compassionate kinship regardless the size of our society.

He loves YouTube because it documents issues without interrogation. He calls it a revolution as overwhelming as the Gutenberg press and a re-birth of genuine journalism where people can seek out contrary viewpoints. I agree, except I'm not convinced it's entirely a good thing to promote as potentially the dominant form of education. Information needs some form of curation. There's a lot of crap out there. And if Marxist courses are the problem in universities, then people like him should stay put to offer an alternative viewpoint.

But I do agree with his concerns about social control, just like I agree with Hedges' concerns. I'm fascinated with the idea that both are concerned with social control, but both think it comes from opposing places: external right-wing think tanks and internal left-wing humanities departments, and targets opposing groups. I worry to what extent Peterson's crusade is muddling the truly frightening concerns from the other side? But maybe that's just my brainwashed leftist ideology talking.

Peterson says "university is a place to be confronted by horrible ideas. History is a bloodbath....Stay home to be safe." I agree absolutely. We must be able to express minority, dissenting views freely and openly, especially in educational facilities. I support him on that even though I'm exactly the kind of person he's blaming for it all - a crazy Marxist feminist egalitarian schooled in a leftist humanities department.

I'll get to those pronouns next time.  (ETA - here's my discussion on that)