I haven’t been saying much about all this yet, mostly because I’m horribly disappointed in my progress, and embarrassed, and also guilty and ashamed that I’m not better yet. This is what happened: my first day back to work I felt pretty fantastic; the next day I was tired, the day after that my joints started to swell a little. But I recovered alright, and aside from being increasingly tired, I was doing sort of okay. There are some things I didn’t want to admit to: while I used to be multi-task a lot, now I can’t seem to. I forget about other windows too easily. I’m easily distracted and forgetful. I’m having trouble concentrating at all. I feel sort of blank. Things went rapidly downhill after that, until within a few days I had excruciating, nearly immobilizing pain in my hips (for reasons as yet unknown), I burst into violent sobs with no provocation or apparent reason whatsoever, and I was entirely, completely exhausted. I hoisted the white flag. I know when I’m beat. My GP took one look at me and said, “Okay, that’s enough. Rest.”
He also told me the thing I hadn’t known yet: my first post-radiation nuclear scan showed something unexpected. That’s why I got called back to the hospital to do it again a week later. It wasn’t a technical problem, or bad pictures. My thyroid bed was lit up like a christmas tree on the scan, indicating more remaining thyroid tissue than expected. My GP told me this because I wanted to know and no one would tell me. He isn’t sure what they’ll do about it. He mentioned “a second surgery”, but that doesn’t seem likely to me, and my GP admits that he has no idea. My surgeon is good. If he didn’t get it out the first time, it’s not coming out. Possibly it means another round of RAI (radioactive iodine), which is not a great scenario either. Going hypo is hard (and takes up to 5 weeks), and recovery from hypo is hard (takes anywhere from 2-3 months). My current recovery has been difficult and I don’t relish the idea of doing it again. But I won’t find out more until the end of the month. So this is why I didn’t get a cake with writing on it in pink icing saying YOU’RE CANCER FREE!!!! They don’t quite know yet. Not for sure.
Everyone told me this was a simple deal; surgery, lounge for a while, sit under a machine for a while, take pill. Easy. I can’t overstate how much this was a poor description of what was to come. And at each stage I thought I was over the very worst of it, only to discover that there was another, taller hurdle to leap over. There is all at once too much information about thyroid cancer around and also not enough. I guess no one is ever ready to hear the whole truth.
I’m reminded of the terror that shook my whole self prior to that surgery; I was terrified of what lay beyond that point when I walked into the operating room, and not just because I was scared to have surgery (which I definitely was). I was scared of the whole thing: being cut, being bandaged up, being in pain; going hypo, the possibility (certainty) of having cancer. Having to incorporate all that into me. Having to be strong enough through that. And now I understand why that terror was justified. It’s not that it’s horribly painful (though the hips, as I say, were really something else, but that has now subsided). It’s that it alters absolutely everything about who you think you are. It’s hard to pick up and move on; you’re just not the person you think you are.
The chief librarian at my place of work likened it to having your central control panel ripped out, and that’s a good comparison. My own metaphors are much darker.
My whole life I didn’t feel all that much of a mind/body split. I am what I am, and all of me is me. It was a very simple equation. Right now I feel like a wine topper stuck on top of a bottle, a disembodied personality; I’m attached to this body, but I have no idea how it works, and half the time there appears to be no relationship at all between what’s going on in my mind and how my body is behaving. I am a terrible judge at what will make me feel good or bad, what will make me cry, what will exhaust me. I can’t determine how much I can do before I hit a wall, I seem to be deaf to any hints my body tries to give me. Today I actually hit a wall in the middle of a sentence. Normally you know how much oxygen and energy you have left to say what you were about to say, but not me. Not right now. All my dials are flailing. Nothing tastes or smells the same, on the banal edge of it. While I never got car sick before, now I’m noticing it, a little, when I take the bus. Where did that come from? Twice now I’ve carried gifts onto buses and left them there, just sitting there, on the seat next to me. Didn’t even notice they were missing until days later. It’s as if I’m not really here at all.
So my realization is this: synthroid (artificial thyroid hormone, to replace my absent thyroid gland) makes me different. Of course it does; given how much it controls, it’s like my new landlord, my new roommate. I’m still me, but my body is now fundamentally different. I’m a pharmaceutical cyborg, with a crucial bit of my physical functioning turned over to carefully calibrated technology in the shape of a tiny purple pill. It’s not as if there was a choice or any other alternative, so there isn’t much room for regrets. If I stop taking it, I get sick and die. Until that looks like a valid option, there’s only one way into this town.
I live in a fundamentally and permanently changed my body, and I need to accept that and begin to learn its rules and cues. There must be a time, when we’re very small, when we don’t know our bodies very well. I can’t imagine that we know from birth how our bodies are going to react in certain circumstances, how we need to protect them. (I can’t help but split mind/body even in my sentence construction; it’s so old school but so completely my reality right now.) Somewhere along the way we must learn to make friends with our bodies, to listen to them and just know, as if instinctively, when something’s wrong, or when they need something, or when we can step it up or need to step back. My slate is wiped clean and I have to take it slowly, learn what I can and can’t do.
It’s not something they’re likely to tell you when they diagnose you, though I’m sure I wouldn’t have wanted to hear it.
You’re not going to be just you anymore. You’re you + synthroid. It will be different.
I suppose I’ll get used to it with time.
When I was at Divinity School in the late 90s, one of the things I was required to do was to take two classes in scriptural studies along with my very free-wheeling program of early modern European history. I didn’t object to this, as it was useful for my studies in Reformation history and religion, but it was extremely new for me. I was a bit intimidated by it. First I took a class on the New Testament, which didn’t make that much of an impression on me other than to boggle at the art of parsing small collections of words to determine who wrote them and what influenced them. After that I took a class on the Hebrew bible, which intimidated me far more. Raised an atheist by devoutly atheist parents, I had at least a cursory understanding of the New Testament, given that our culture is saturated with it; the Hebrew bible was more of a mystery. But in the end, this class was one of the ones that utterly changed my world view.
We started at the beginning, with Genesis, of course. The first big revelation is that we have particular expectations of stories, expectations that are culturally defined, not “natural”. When someone tells us a story, a “history”, we anticipate that we are getting a basic list of facts. This is not the way middle eastern stories were told. Instead, they expressed truths through metaphor; take a familiar narrative and twist it in a particular way. We still do this, of course. But for narratives like this to make sense, you need to be well-versed in the whole culture in order to understand the signifiers. This is the same revelation I had when I took a music history class that finally explained to me why it was impossible to understand hip hop as anything other than an extraordinarily high form of art; to use the culture as your instrument, and manipulate it to say something new, with each note, each tone, coming with its own particular cultural resonance. To tell a story that isn’t just the straight narrative, but is a story that constructs itself in your head based on all the internal meanings of the pieces. To be outside the culture that created these kinds of narratives means that you won’t ever entirely understand all of it, like reading novels based on biblical stories without knowing the bible; you can understand the straight narrative, but not it’s inherent meaning. I was inspired by this form of story telling. I appreciate the depth of it. So my subsequent reading of the Hebrew bible brought me insights I couldn’t have come to otherwise, though I know I’m missing so much else. If you think about it, one of the overriding stories of the Hebrew Bible is that anyone who thinks they understand the will of G-d, the mind of G-d, is bound for failure. G-d cannot be understood by the human mind. To me, this was an important spiritual realization. Men and women since the beginning have been trying to find a way to communicate, to understand.
What followed in that course was a description of the history of the tribes; the nomadic history, the tribes who claimed land, the one who was dispossessed and became the priestly class. The remaining nomadic tradition that brought the key religious objects, the tabernacle containing the holiest of objects, to all communities in turn. I loved this idea; a movable temple, so that no one area laid claim to these precious objects. And how precious those objects were! Imagine: you have found one way to communicate with your creator and benefactor; it’s an unusual way, granted. You carry a seat, and this seat is the liminal space where your G-d’s space and yours coincide. This is the one chink in the wall between you and G-d; being near these objects is being near your G-d, not because they are divine necessarily, but because these are the tools that restructure space and time so that the hear the strains of G-d’s voice. G-d might well be everywhere, but this space, this little string and cans, is the only way you can make direct contact. And then the temple settles and is built in Jerusalem; the centre of that temple contains this special spot, the telephone line between heaven and earth. The communication lines aren’t just initiated by objects anymore, but are linked to this particular place, this special rock, this quality of the planet at this particular location. A tiny footprint of the planet where everything is arranged just right, the riverbed that brings G-d’s words to earth. As time goes on, this place is more and more protected; only the priests can go inside to be near this wonderful and dangerous spot. The course ended with only a mention that the following event is the destruction of the temple in 586 BCE. Just a mention.
Photo by Christopher Chan
The following term I took a course in comparative iconography. And the very first day, the instructor (the wonderful Kimberley Patton) showed us a picture of the Dome of the Rock in Jerusalem. She told us: “according to measurements based on the placement of the remains of the temple, the Dome of the Rock, the oldest existing Muslim structure, sits over the place where the Holiest of Holies would have been.”
I was so struck by this image, by this reality. It’s as if the temple had just been destroyed for me, the implications hadn’t quite been revealed to me until that moment. There are no more prophets after the destruction of the temple, because there cannot be. G-d’s voice can no longer be heard. The means of communication are gone. These two spheres, the mortal and the immortal, still spin around each other, regarding each other, but no voice can be heard. No more fire in the bushes that does not burn its leaves, no more commandments, no more lost and confused youngest sons asked to bring an awkward, unwanted message to his people. No more surprise visits at the well. And here it is, that spot, the broken communication lines. The tools are long gone. The silence is deafening. I had to leave the room to catch my breath and consider it all, let it all sink in. The tragedy of it; a crucial, comforting connection, gone. To be cast adrift like that, never hearing the voice of a loved one ever again.
So in that moment I understood how contested that ground is, how high the stakes can be when history, religious and geography collide. So that’s my story for the 60th birthday of the modern state of Israel. G-d help us all.