Monday, September 21, 2009

“Below Zero”

It’s just about two and a half weeks into the semester, and already I’m feeling exhausted and drained. I received a link to the following documentary, by Claude Parker, from the leader of one of the support groups that I am a part of. The documentary is about living with lupus and rheumatoid arthritis*.

One of the women suggests that having lupus and/or rheumatoid arthritis means that you are always starting “below zero”. You are always starting at a “deficit”. And I think this is a very fitting way to describe what it means to be dealing with such illnesses. No matter how much sleep I get, or how much or little I do, I’m always exhausted. I’m always relying on my reserves to get me through. And sometimes my reserves run out before I want them to.

All of this is to say that I am working extra hard to stay rested and not get too run down, so I can avoid getting sick in the midst of what is promising to be a crazy flu season.

And with a new school year (or semester), comes a new group of people to decide whether or not to disclose to. Because of the things I’m hearing about students getting sick already, and the potential of widespread illness, I do plan to disclose to my professors that I am chronically ill, and in the event that I do get sick, it could hit me harder than it might hit other people.

I hate having to operate on “what ifs”. It makes me feel like I’m sealing my fate to get sick by saying it. But on the other hand, I’ll be in worse shape if I don’t say anything, and I do end up getting sick (and have to miss school).

Right now, I feel like I’m at a double disadvantage. I start out at below zero because of lupus and rheumatoid arthritis. And I’m also at below zero because I’ve hit my limit. Right now, I feel as if I am below zero in every way possible…

I’ve realized, given recent events, that much of my time in grad school has been spent losing sight of what’s really important – me. I matter, and I’m worthy, and there are no letters in the world behind my name that can live up to that. I have to do that for myself. And I’m not sure I can do that here.

I want to live my life with no regrets. I don’t want to make the same mistake twice. And when I do make mistakes, I want to learn, grow, and become stronger as a result. Right now I’m unhappy. I am full of internal conflict, and I feel like my insides have been twisted together in knots.

More than anything, I want to be true to myself. And that means that in the end, I want what I do to improve the world. I want what I do to matter. And I want to be a good person and matter to others. I didn’t come to grad school so that I could get published in the top journals. I came to grad school so I could help heal the world. But in order to make a difference in the world, I have to heal myself first.

I’ve also hit my limit in fighting with myself. I’ve tried really hard over the past few years to strike a balance between my school and personal life. And not only have I failed, but others have failed, as well.

It has come to my attention recently that there are people who think they know what’s going on in my life, who absolutely don’t, even though they think they would like to. And I’ve found out that there are other people who ask my friends how I am doing or if I am okay. It’s funny because I never knew these people had any idea what was going on with me (and I’m not sure they really do). You know, I’m not going to volunteer that I am ill to everyone in the sociology department, in the context of the department. But if anyone ever came to ask how I felt or how I was doing, I surely would have answered them and provided them with any information they wanted. I don’t think I’ve actively tried to conceal being ill. I just haven’t been “out” to everyone because the response I’ve often received has been negative, telling me I shouldn’t aspire to an academic career, or that I’ll be a more “empathetic” sociologist because I am sick. I wonder how differently I would feel about things now if more people had actually made an attempt to care. I wouldn’t feel so alone, and I probably wouldn’t feel as conflicted as I do. But one thing is for sure. I don’t want to be here right now.

I know that the decisions I currently face are difficult ones. But I am confident that I will be a stronger person having asked myself and attempting to answer the tough questions. I have always delighted in proving others wrong when they have doubted me. But I realize now that, that is not a sufficient reason for staying in grad school. Finishing simply to spite those who suggested I couldn’t or shouldn’t do it is not a valid reason for spending at least three more years at a place that I feel does not respect the person that I am or the person I hope to become.

I don’t think leaving permanently is an option. There was obviously something about sociology that spoke to me, my first day of my freshman year of college, and there was something about sociology that I kept coming back to, no matter how crazy or difficult things were as an undergrad. I had hope then, and I felt like what I was doing mattered. So what gives now?

I found out that I passed my preliminary examination. While this is something that I should be celebrating, I’m not. This monumental event is overshadowed by sadness and confusion. Do I belong here? (I mean, I passed my prelim, right? That says something) Did I make the right decision in deciding to go straight to grad school, and not stopping at all through illness? Sure, I’m happy that I passed. (I was so worried about failing, that I was nauseous while preparing to open the envelope) But in the back of my mind, I also think how much easier the decisions I face would be if I hadn’t.

I feel awful voicing this. It makes me sound ungrateful about the opportunities I have been given here. And that is certainly not the case. But in order to feel accepted and approved of, a person shouldn’t have to conceal who they are, or feel that they have to squelch something that is so much a part of their life.

Living a double life has always been exhausting, but these days, it’s more than that. It’s taking energy that I don’t have to give…

And I know that a lot of what is going to come from my friends is that I’m stronger than I give myself credit for. And I’m sure they’re right. But illness has also taught me that sometimes being strong means knowing when to say “I can’t”…

* Even if you don’t have lupus and rheumatoid arthritis, I would recommend taking a look at this documentary. It’s very moving.


  1. Leslie, I can relate to this on so many levels...the push and pull of private and professional life, the exhaustion and starting "below zero," etc, etc. I don't envy you this difficult decision.

    If it is any help, one thing I can say is that I have played the "I will do this to spite you because you said I couldn't" game many, many times. Like, my entire life. And it has taken a lot of mistakes and twists and turns to realize that in the end, nobody wins. I might accomplish the goal, but at what expense? It's a hollow victory, and the ramifications are significant.

    Thinking of you...

  2. I love butterflies so of course i like the new decoration scheme. I felt the same way about my prelim. shortly after i passed is when i started considering taking time off form the PhD program and doing something else. And i understand and agree that "you" are the thing that's really important. I want to help other people and heal the world too. but i can't do that until i've learned to live in harmony with my body.

  3. Laurie, thanks for your comment, and for your ever articulate way of supporting and counseling. I really appreciate your support. And I think you are right. In a lot of facets of the illness experience, nobody wins.

    And thanks, Jeremy, too!