[Originally posted on CaringBridge on April 10]
Today I left the hospital as a cyborg! I was there to have a chemotherapy port implanted, making me part human part machine, so now if I write academic pieces about the “post-human” or “human-machine hybrid” I’ll be speaking from personal experience.
More significant for me, though, is that this relatively small piece of metal and plastic is the first truly visible sign of illness that I have. It makes my body legible as “sick.” Cancer is insidious for a lot of reasons, most of which can be boiled down to how good it is at hiding. Cancer cells evade the body’s natural detection and elimination system, sneaking around and amassing quietly. But also, people with cancer frequently don’t “look sick” at all. In fact, I had been looking healthier than any time in recent memory. I had finally gotten to a place of stability in my personal and professional life (after years of crisis after crisis that left me devastated) and gotten back to running and occasional yoga. I felt so much better. I had shaken much of the bone-weariness of depression and the chronic fatigue that had dogged me since my grad school years. (Still no explanation on that one, by the way, but it was serious enough that it left me with sky-high white blood cell numbers that warranted an investigation for cancer in 2016…which I did not have then.) I was feeling undeniably and pleasurably healthy!
I was not. I had stage 4 cancer the whole time I felt I was healing, improving, flourishing. It causes pretty extreme cognitive dissonance for me to think about that, as I know it did (and probably does) for many people in my life, especially those who went through much or all of the past 18 months with me. I remember saying to a friend who I’d met about 9 months prior, “I’ve had cancer the entire time you’ve known me,” and both of us doing some stunned blinking as that fact sank in. All those things I did with cancer–buying a house, meeting new people, traveling to new places, going hiking, giving papers, going swimming, playing pool, drinking in bars, losing at pub trivia–all of them done while I was unknowingly harboring this disease. It was, in a very literal sense of the term, incredible.
More significant for me, though, is that this relatively small piece of metal and plastic is the first truly visible sign of illness that I have. It makes my body legible as “sick.” Cancer is insidious for a lot of reasons, most of which can be boiled down to how good it is at hiding. Cancer cells evade the body’s natural detection and elimination system, sneaking around and amassing quietly. But also, people with cancer frequently don’t “look sick” at all. In fact, I had been looking healthier than any time in recent memory. I had finally gotten to a place of stability in my personal and professional life (after years of crisis after crisis that left me devastated) and gotten back to running and occasional yoga. I felt so much better. I had shaken much of the bone-weariness of depression and the chronic fatigue that had dogged me since my grad school years. (Still no explanation on that one, by the way, but it was serious enough that it left me with sky-high white blood cell numbers that warranted an investigation for cancer in 2016…which I did not have then.) I was feeling undeniably and pleasurably healthy!
I was not. I had stage 4 cancer the whole time I felt I was healing, improving, flourishing. It causes pretty extreme cognitive dissonance for me to think about that, as I know it did (and probably does) for many people in my life, especially those who went through much or all of the past 18 months with me. I remember saying to a friend who I’d met about 9 months prior, “I’ve had cancer the entire time you’ve known me,” and both of us doing some stunned blinking as that fact sank in. All those things I did with cancer–buying a house, meeting new people, traveling to new places, going hiking, giving papers, going swimming, playing pool, drinking in bars, losing at pub trivia–all of them done while I was unknowingly harboring this disease. It was, in a very literal sense of the term, incredible.
Truthfully, though, even since I have known about having cancer I haven’t “looked sick” at all. As I’ve continued to live my life as usual (or maybe even with a little more urgency and intensity than normal) I’ve seen people who know about my diagnosis maybe squint a little, to see if they can see a way it makes me different. From afar, it certainly does not. From closer, it also mostly doesn’t. The only time I notice any impairment, honestly, is in the slight shortness of breath that I get from the lesions in my lungs. And even that only takes me back to the walking pace of a normal human instead of a long-legged ex-New Yorker. I imagine people I see every day might go through cycles of forgetting and remembering, as I comment on what’s going on in my life.
People who don’t know about my diagnosis absolutely cannot tell that I’m sick and, with them, I face the choice between answering questions about how I’m doing honestly (“pretty well, given the circumstances, but the circumstances are terrible”) or continuing the social forms and responding without really engaging. For what it’s worth, I usually do the latter because the emotional work of telling people, over and over, about your serious illness is considerable. I may not have a choice much longer, though, as signs of my disease become more visible and more legible. (There’s another post in here about illness and politeness, which perhaps I’ll get back to later. But suffice it to say that if I owe you a thank-you note or a reply email I am very aware of it and also paralyzed with inability to do anything about it and I’m sorry.)
This is, I think, much more what women fear about losing their hair. I’ve seen it interpreted as more like vanity, and I’m a little guilty of believing that when I was first diagnosed. I thought, “I don’t care THAT much about my appearance so I won’t care about the hair thing as much.” But now that I have more context I feel like it’s more that having no hair is a marker of extreme difference from the norm of what women look like.When men are bald there’s a lot more of a chance that it’s something natural and that they would choose to wear it that way. When women even have short hair–which I have for a couple years now–it’s a little unusual. Choosing to be bald would be even more extreme so that covering up baldness with the inevitable headscarf itself reads as a sign of cancer. (Of course there are other discussions to be had here about the norms of masculinity vs. femininity…)
I’m also camouflaged by my age, which is so young for this disease that it’s not what people immediately think of. (Yet another post I could write would be about the similarity of many chemo symptoms to pregnancy and the assumptions that leads to.) Even my decision to dye my hair purple (which has now mostly washed out, making me a bleach blonde on top with purple underneath) reads purely as a fashion choice. And there’s even a tiny chance that even if I go bald people will think of that as fashion too. Because another way in which I don’t read as “sick” has to do with the privilege I’ve always enjoyed from the “halo effect”–being tall and having naturally good bone structure, thick hair, and just generally “good genes” (until they gave me cancer!). If you do have a look like that which lets you look “high fashion” it’s far more plausible that you might choose to wear various hair colors, or a series of wigs, or be totally bald just to experiment with your looks than if you don’t. What’s more, pretty people, in general, don’t fit our concept of illness. It’s not just that we don’t think sick people generally look “pretty”, but that we tend to assume pretty people are also healthy. So I’ve been riding that wave of privilege too. But it’s all about to change. And while I’m a little ashamed at how worried I am about not reading as “pretty” to a general public (it’s hard to give up privileges), I’m also interested to see how my experience changes as I lose some of those standard beauty hallmarks.
This port I have is small - about the size of a quarter - and it sits just below my collarbone. A catheter runs up from it into a vein in my neck. It is not easily concealed by most regular outfits, even though it certainly doesn’t draw attention to itself. I asked the surgeon today whether it would be visible to and she said that, “since you’re so skinny,” it absolutely would. She also told me she was taking extra time with the sutures since “you have such beautiful skin that I want to minimize the scarring.” The nurses wheeling me into the OR commented on how long my legs were, how great my hair looked. They were being nice to me because I am in a tough position, certainly, and it is comforting. I’m sure they say kind things to whoever they are caring for. But probably not those things.
Even here, there is privilege. I’m intrigued, though a little intimidated, by the ways in which the treatment process will necessitate that I rethink “beauty” for myself. I’ve been able to more or less meet the basic cultural standards without trying basically my whole life. That’s not a brag - that’s my good luck. And please don’t get me wrong: I have certainly have had my own share of insecurities and gone through phases of truly hating my body and my appearance. (The way we feel about ourselves and how we look is seldom logical or altered by observable facts or even external validation.) But now I have a whole series of changes facing my body that make me realize how very comfortable in it I have been and how much of it I have taken for granted, both in its capabilities and in its appearance.
It will be a difficult part of this process. And although I feel trepidation I do also somewhat look forward to the ways I will be forced to re-conceive of my body–of what it is and what it can do. The past few days had beautiful weather here so I allowed myself to go running. I had worried that this was something that, while having chemo, I should not do. But thinking about what I would ask of my body in the coming months made me decide that I should think of it as an ally; that we should work together to expel this invader. To do that, I needed to work with it to be strong, not treat the whole body itself as either an enemy or a passive vehicle. I’m not allowed to run for another week thanks to the surgery, but I’ll be doing what I can.
As academics, we often forget them or regard them as a hindrance. More than once, I’ve wished and heard others wish to be a “brain in a box.” My friends: no. Do not do this. Our bodies are incredible, truly. Give them some range and let’s see what they can do.
People who don’t know about my diagnosis absolutely cannot tell that I’m sick and, with them, I face the choice between answering questions about how I’m doing honestly (“pretty well, given the circumstances, but the circumstances are terrible”) or continuing the social forms and responding without really engaging. For what it’s worth, I usually do the latter because the emotional work of telling people, over and over, about your serious illness is considerable. I may not have a choice much longer, though, as signs of my disease become more visible and more legible. (There’s another post in here about illness and politeness, which perhaps I’ll get back to later. But suffice it to say that if I owe you a thank-you note or a reply email I am very aware of it and also paralyzed with inability to do anything about it and I’m sorry.)
This is, I think, much more what women fear about losing their hair. I’ve seen it interpreted as more like vanity, and I’m a little guilty of believing that when I was first diagnosed. I thought, “I don’t care THAT much about my appearance so I won’t care about the hair thing as much.” But now that I have more context I feel like it’s more that having no hair is a marker of extreme difference from the norm of what women look like.When men are bald there’s a lot more of a chance that it’s something natural and that they would choose to wear it that way. When women even have short hair–which I have for a couple years now–it’s a little unusual. Choosing to be bald would be even more extreme so that covering up baldness with the inevitable headscarf itself reads as a sign of cancer. (Of course there are other discussions to be had here about the norms of masculinity vs. femininity…)
I’m also camouflaged by my age, which is so young for this disease that it’s not what people immediately think of. (Yet another post I could write would be about the similarity of many chemo symptoms to pregnancy and the assumptions that leads to.) Even my decision to dye my hair purple (which has now mostly washed out, making me a bleach blonde on top with purple underneath) reads purely as a fashion choice. And there’s even a tiny chance that even if I go bald people will think of that as fashion too. Because another way in which I don’t read as “sick” has to do with the privilege I’ve always enjoyed from the “halo effect”–being tall and having naturally good bone structure, thick hair, and just generally “good genes” (until they gave me cancer!). If you do have a look like that which lets you look “high fashion” it’s far more plausible that you might choose to wear various hair colors, or a series of wigs, or be totally bald just to experiment with your looks than if you don’t. What’s more, pretty people, in general, don’t fit our concept of illness. It’s not just that we don’t think sick people generally look “pretty”, but that we tend to assume pretty people are also healthy. So I’ve been riding that wave of privilege too. But it’s all about to change. And while I’m a little ashamed at how worried I am about not reading as “pretty” to a general public (it’s hard to give up privileges), I’m also interested to see how my experience changes as I lose some of those standard beauty hallmarks.
This port I have is small - about the size of a quarter - and it sits just below my collarbone. A catheter runs up from it into a vein in my neck. It is not easily concealed by most regular outfits, even though it certainly doesn’t draw attention to itself. I asked the surgeon today whether it would be visible to and she said that, “since you’re so skinny,” it absolutely would. She also told me she was taking extra time with the sutures since “you have such beautiful skin that I want to minimize the scarring.” The nurses wheeling me into the OR commented on how long my legs were, how great my hair looked. They were being nice to me because I am in a tough position, certainly, and it is comforting. I’m sure they say kind things to whoever they are caring for. But probably not those things.
Even here, there is privilege. I’m intrigued, though a little intimidated, by the ways in which the treatment process will necessitate that I rethink “beauty” for myself. I’ve been able to more or less meet the basic cultural standards without trying basically my whole life. That’s not a brag - that’s my good luck. And please don’t get me wrong: I have certainly have had my own share of insecurities and gone through phases of truly hating my body and my appearance. (The way we feel about ourselves and how we look is seldom logical or altered by observable facts or even external validation.) But now I have a whole series of changes facing my body that make me realize how very comfortable in it I have been and how much of it I have taken for granted, both in its capabilities and in its appearance.
It will be a difficult part of this process. And although I feel trepidation I do also somewhat look forward to the ways I will be forced to re-conceive of my body–of what it is and what it can do. The past few days had beautiful weather here so I allowed myself to go running. I had worried that this was something that, while having chemo, I should not do. But thinking about what I would ask of my body in the coming months made me decide that I should think of it as an ally; that we should work together to expel this invader. To do that, I needed to work with it to be strong, not treat the whole body itself as either an enemy or a passive vehicle. I’m not allowed to run for another week thanks to the surgery, but I’ll be doing what I can.
As academics, we often forget them or regard them as a hindrance. More than once, I’ve wished and heard others wish to be a “brain in a box.” My friends: no. Do not do this. Our bodies are incredible, truly. Give them some range and let’s see what they can do.
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