Tuesday, October 28, 2008

“Illness As Metaphor” For Life

“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place” (3).

- Susan Sontag, Illness As Metaphor
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I’ve been a pretty terrible blogger these past few weeks, but between schoolwork, teaching, and the weather, my time and energy has really been spent. So it’s time for a catch up… (and I’ll attempt to be coherent here, but I have a lot to say)

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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.

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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.

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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…

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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 na├»ve 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.

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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.

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(Sontag, Susan. Illness As Metaphor. New York: Picador, 2001)

5 comments:

  1. Leslie,

    I nominated you yesterday at my blog for the Kreativ Blogger Award. When you have a chance, pop over to the post to claim your award, and then pass it along to others you would like to see honored.

    I admire your writing, your creativity and your strength. Though you are young in years, you are an "old soul" with much to share with us all. Thank you for doing it so honestly and so well.

    Love and gentle hugs,
    Maureen
    http://beingchronicallyillisapill.blogspot.com

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  2. Leslie,

    WOW, you certainly are going through an awful lot at one time. I can't imagine how you wouldn't feel overwhelmed, frustrated and out of control. All of this is a balancing act for every single one of us who lives with chronic illness, and frankly we handle it better at some times than others. I too got sick in my 20's (although if I look back, I realize I was sick long before then, I just didn't recognize it as such). It is so hard to be young and ill, because no one else seems to understand. It makes you feel like you don't belong anywhere.

    As far as caring too much what people think, you certainly aren't alone in that either. It took me years to finally cure myself of that one (and it still occasionally creeps in). I think you are light years ahead of where you think you are. You already recognize that life will need to be different than you thought it would, that taking care of yourself is important, and that you deserve the best life you can possibly have. I know people who are much older and have been sick longer who aren't able to grasp those things.

    Don't let anyone else define you, or what you can or can't do, listen to your own mind and body and you will find answers. Life may not look like you thought it would, but it can be incredibly fulfilling and rewarding in ways you may not have dreamed of yet. And who knows, maybe you WILL be the sociologist who can empathize, and maybe that will open up all sorts of possibilities, not only for you but others behind you.

    Take a deep breath, allow yourself to feel what you feel, give yourself time to adapt to all the changes you are going through. Know that some people will never "get it" and they aren't worth your energy or time. Surround yourself with supportive, understanding people in real life and cyberspace. Continue to be who you are, because who you are is a really terrific person and illness isn't going to change that.

    Let me know if there is anything I can do to help. Your honesty and intelligence are an inspiration to me. I only found your blog recently, but I am amazed by you.

    Hang in there, there really is good in all of this, it just takes time to see and appreciate it.

    Maureen
    http://beingchronicallyillisapill.blogspot.com

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  3. Thanks Maureen, for the award, and all of your help and support!

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  4. Leslie, as always, this post really resonates with me. I struggle so much with what my "healthy self" should be able to do vs what my "ill self" can actually do. It's so hard to cut myself a break without feeling like I'm giving up on the person I am and want to be.

    Being young and chronically ill is just crummy. I'm so glad there's finally a presence of us, a community of us joining together. Chronic illness isn't "supposed" to happen to us when we're so young. But it does. And I'm thankful that we're able to reach out to each other. One of the hardest parts about being young and sick is that the healthy ones around us just don't get it. If they haven't been sick they can't understand it - it's just not in their realm of experience. I wouldn't wish this gig on anyone, but it's hard feeling this isolation.

    Like you, I'm still trying to discover how my illness and my career can fit and work together, without being at odds all the time. Both of us are in professions that can benefit from our knowledge and experience, but it's hard sometimes to find the courage to pursue that path. And learning how it all works together.

    I think that you are doing wonderful things with your life. Finding and reading your blog has made a big difference to me. Just knowing there's someone else out there who is young and sick like me, and struggling to make it all work. I wish neither of us were in this situation, but I'm glad we can support each other.

    Hang in there, honey, and try to be compassionate toward yourself. Some of the best advice I was ever given - be kind to yourself, the same way you would be to a friend if she were sick like you. Think of the kinds of things you would say to her, and say them to yourself.

    Many hugs to you,
    MJ
    rhymeswithmigraine.blogspot.com

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  5. MJ,
    I really appreciate your comments on this. While a lot of people have suggested that I need to give myself a break and be kind to myself, I think that you've taken that a step further and really helped me to see that I've been too tough on myself. By thinking of treating myself like I would treat a friend who was sick really makes me realize how easy it is to place ourselves on a different plane than everyone else. It makes complete sense to me that I would be kind and sympathetic to an ill friend. But I've been judging myself outside of that. Thanks for helping to see things in a new way! It's nice to know that there are people like you out there, too!
    Leslie

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