Super Bon!

Part of chronic illness is managing others’ responses to it. In the sense that lots of people want to know what’s happening and I can’t possibly update everyone individually. So I have resorted to mass emails. Here’s tonight’s.

——–

Dear Friends and Colleagues Near and Far,

I’m writing with another brief cancer update.

Today was a big medical day. In the morning I had a PET scan, which is a whole body scan where they look for cells that take up radioactive material (which was injected into me). On first glance at the scan, the only area that appears to be abnormally lit up (brains, hearts, livers, etc usually light up) is the remaining part of my thyroid. But we need a proper report, which will be another week or two. Late this afternoon, I met with my surgeon and my endocrinologist (who also serves as an oncologist). They both suggested that I hold off on surgery for now while we assess some things. They are also referring me for what is essentially a third opinion. There is also apparently some (very slim) possibility that my right vocal nerve might start working again if it is still there. I’m not holding out for that one but of course it would be nice.

To an observer, the moving surgery dates and all might sound maddening. But given the risks posed by another surgery (especially to my voice), I am 100% in favor of a cautious approach. So for now it’s more appointments, more consultations and possibly more tests. And Synthroid.

As always, my apologies for not writing back to everyone. I’m finding it hard to keep up with email, but I’m hopeful that in the coming weeks I can catch up.

More news here as it happens.

My Radioactive Best,
–Jonathan

We live in a world where people are more private about their ailments than their sex lives (the same has been said about money, but that’s a whole other subject). If I had to guess, such privacy stems from stigma, the desire not to be perceived as weak and the death taboo. No matter the cause, almost all protracted illness carries with it a certain stigma in many social quarters, and stigma is something that can be wielded against people at unfortunate times. As I’m fond of pointing out, one of the unfortunate side-effects of broad secularization (overall a great historical achievement) is that people no longer seem able to deal with the fact that they, and everyone they know will one day die. So people stay quiet about their ailments. I was one of them. I kept to myself about my various symptoms before I got my diagnosis, despite the fact that I’d had problems for months.

When I learned I had cancer, I had a decision to make. I could treat the illness as a private matter, telling only my closest friends and family. But that would mean all sorts of unexplained behaviors and absences for months on end. By the nature of my job, I lead a public life. Professors don’t just disappear from large lecture courses in the middle of the term. Department chairs don’t just suddenly abandon their posts in the middle of term, and even casual friends don’t just stop returning phone calls and emails without raising questions. Moreover, creating a divide between those who know and those who do not meant a whole lot of extra work for me in managing my identity and who knew what about me. So I decided to take the plunge. I would just tell everyone. I suppose there’s still and inside and outside as you won’t be seeing photos of my scar here (healing nicely, thanks to my surgeon’s artistry and nightly doses of neosporin) or reading various gory details of various, ahem, post-surgical events (apologies to Gone Feral readers who may have wandered over). But basically, I’m out.

Living as half of a heterosexual couple, I can’t really say what it’s like to be queer and out, but I have read enough and talk with enough people that there must be some parallels in the liberation that one feels. I am, of course, tremendously privileged and lucky to live and work in an incredibly supportive environment. From my time on two survivor listservs, I know that this is not the case for everyone. So there’s probably a class and education element. But it’s been incredibly eye-opening for me. Maybe it’s just me, but I feel like health and the body are still places where ideology does its work most effectively. I get on the metro car in the morning, and apart from someone who is obviously hurting in some way, I assume I am in a car full of healthy bodies who have no interaction with the medical and psychological complex. I go to work and assume the same thing. My problems are my own, theirs are their own. The death taboo does it work: we live as if we are surrounded by undamaged bodies.

But of course this is not the case. Almost everyone has some level of interaction with medicine or psychology, and it’s a fact of bodies that they break down, they do not work as they are supposed to, and they create all sorts of mysteries within themselves.

I opened myself up to a tremendous wave of emotional support from friends and strangers alike, and that’s been great. But something else happened that because of the ideological blinders, I never really expected. I started hearing about other people’s medical issues. A lot. Once I took the first step, there was a conversational space for other people to talk about their issues and tell their stories. It has been tremendously freeing to talk openly about things that are not often openly discussed, not for some kind of thrill of breaking taboos, but for the much more mundane pleasure of connecting with people. I’m not saying people should sit around talking about their illnesses and bodies all day. But they shouldn’t feel like they can’t when the subject is apropos or it’s an issue on their minds.

That is not to say that there isn’t awkwardness. I did not ever envision the day I’d stand in front of 230 undergraduates and declare to them that I have thyroid cancer (complete with CAT scans of cat thyroids for illustration in a powerpoint). Being McGill students, I got a ton of incredibly nice emails, many of which are still owed a response (keeping up with the email and cards has proven impossible though of course I’m grateful for every single note). Today I had to explain to my grad seminar what was wrong with my voice and why I was using a microphone. And why I might disappear for part of the semester.* That’s not the first-day vibe I usually go for.

The same is true with strangers. At least once a day when I’m out or get a phone call, someone asks what is wrong with my voice. So I tell them that I’ve got a paralyzed vocal cord from thyroid cancer. I don’t know who said that coming out is a constant, ongoing process, but again I feel that there is some kind of parallel between what disability studies scholars sometimes call normalism (you can guess what that means) and heterosexism. In both cases, you’re assumed to belong to a dominant category until suddenly, you do not. And when you do not, you must explain yourself.

So I explain myself. I figure it’s good to raise awareness, it’s easier than making something up, and it’s made life with cancer immeasurably more tolerable and simpler.

————-

* Teaching while undergoing treatment sounds insane, but it’s not. That’s for another post. Just trust me. Also, I’m co-teaching the class so if the going gets rough at the wrong time, the students are not hung out to dry.