- Susan Sontag, Illness As Metaphor
The thing I have been struggling with a lot lately is the disjuncture between fantasy and reality. There is the fantasy of what I would like to do or try to convince myself that I can do, and there is the reality of what I can do because of my illnesses.
Part of the problem, I realize, is that there is so much about ones person tied up in illness. I must not be as morally upright since I wasn’t able to resist the temptation of illness. Oh yes, because feeling crappy 99 percent of the time is such a desirable state of being… That somehow it’s my fault… As Talcott Parsons (a sociologist – no big surprise there) said of the “sick role,” people become sick so they have an excuse to be lazy and avoid their social responsibilities. So with that rhetoric in mind, I attempt to face the world in as true a fashion as I can muster…
The truth is, I’ve finally come to the realization that while I would like to deny the reality of my illnesses, I can no longer afford to do so. And this means, unfortunately, more disclosing (and even more unfortunately, uncomfortable conversations) than I would like to be doing (and having) at this point in time.
In an attempt to reach out to my department and attempt to find a balance, I’m left feeling even more than before that I don’t belong in grad school and that my work life and my personal life cannot possibly coexist in an academic environment. And that’s sad because for the first time all year, I’m starting to realize that my research does have something to offer to the world.
But in a conversation with someone I trusted that was supposed to be helpful, I was offered unwanted and unasked for advice and the suggestion that maybe my career will be helped by the fact that I’m sick – a sick sociologist who can empathize – is exactly what the field needs. Great! Where do I sign up for that?
I apologize (only partly) for the sarcasm, but that is the stage I’m at right now. Part of the reason I haven’t written in awhile is because I was so hurt, confused, and taken aback by the conversation that I had to distance myself a little. But with the help and support of some virtual and in-person friends, I realized that I had every right to be upset. And of course, I’m still trying to work through this specific situation, but I’m moving forward in terms of looking out for myself.
Partly I feel so bad about all of this because I care too much about what other people think. And while I know that I shouldn’t, I do. It’s so frustrating because I’m asking for help and concessions out of necessity, not out of want. I wish I didn’t have to be having these conversations at all, but not having such conversations does no one, least of all me, any good at all. And yet, no one is making it easy for me to have these conversations.
And the truth is, I can see how stress exacerbates these illnesses. Last week was a crazy, non-stop week. One night, I got home knowing that I had all this stuff to do and then I couldn’t remember any of it. Literally, my mind was a total blank. I called my sister and she asked me what I was doing. My response was something like I’m sitting here trying to remember what I’m supposed to be doing.
I put in a 15-hour day last week and realized that I would be paying for it for several days afterward. A fine display from the old me, but not the smartest move for the new (and improved?) me. At some point, I am going to have to let myself off the hook for the things that are no longer realistic aspects of my life. At the same time, however, someone in my department is going to have to tell me that it’s “okay” and that I shouldn’t feel bad.
But it’s so easy to get caught up in the jumble of papers, proposal writing, teaching, grading, and all of the other responsibilities that come with being a grad student. And it’s hard for me to admit to myself that I have limits - and not superhuman ones, either - but real limits that I need to consider and pay attention to.
I’ve had these dreams, nightmares really. I’ve mentioned before the dreams of all my teeth and hair falling out. But it wasn’t until the recent dreams I’ve had about helicopters literally falling out of the sky and crashing down in front of me that I realized that those dreams aren’t foreshadowing real events. But it’s what the dreams represent that is real. I’m living my life waiting for the next bad thing to happen. And I know that sounds awful and depressing coming from a 23-year-old, but the truth is, I feel like that’s all I know lately. While that thinking may protect you from the bad stuff, though, it also closes you off from allowing good things to happen, too.
I don’t really know how I feel about anything anymore.
It’s like the last time I went to the rheumatologist, Doctor C asked me if I had a list of questions (as I usually do). And I didn’t have any. It’s because the questions I want answers to, nobody, not even Doctor C, is capable of answering. Truth be told, there is still that lingering question that starts with a w and has an h in the middle and a y at the end. And it’s not the medical answers that I want. It’s not that I want to know how my body got so screwed up. It’s that I want to know how my life got to a place where good and bad swirl together to make gray. And the whole world appears cloudy. And daily I ask myself what I’m doing with my life.
It’s difficult to imagine that these are truly the best years of my life.
I’m truly feeling confused at the moment. And talk about confusing, I ran into Doctor C the other day outside of the hospital environment. And it was weird. Doctor C actually stopped, though, and asked me how things were going. I think that had this happened a few months ago, Doctor C probably would have ignored me. And as much as I think it’s a credit to the fact that our relationship is much better than it was before, it’s strange when various lives and identities (literally) collide head on. I’m still not sure that I’ve fully “recovered” from this bizarre occurrence…
In some ways, I’m lucky that all of this illness stuff happened in the context of grad school. I was thinking about how it would have pretty much derailed my life in nearly any other situation (i.e. a year off, a job, or Teach for America).
But the truth is, we never really go into any situation tabula rasa (with a clean slate). And it was naïve of me to think that grad school would mark a completely new beginning. Because the more I think about it, the more I realize that grad school is just a continuation of my previous life as a student. But unfortunately, I can’t be that student anymore. And I find myself daily doing battle with two conflicting identities – the person/student I was then – and the person/student I am today.
So after all that, why “illness as metaphor”, you ask? Because illness forces us in a very strange and roundabout way to face the big questions whether we are ready to or not. And it’s sad that it takes such a mind-bending event to make us reevaluate our priorities or who we are as people.
The other thing I will say about Sontag is that she talks about how cancer becomes this term used, not only for illness, but also for the people and things that are viewed as negative by society. And in some ways, I think this bizarre class known as autoimmune diseases has taken cancer’s place as the unspoken and unseen foe that has the potential to fester until the only result is to destroy everything it comes in contact with.
(Sontag, Susan. Illness As Metaphor. New York: Picador, 2001)