Monday, March 2, 2009

Mis(s). Directed And Mis(s). Understood

“I’ve been down this road walkin’ the line
That’s painted by pride
And I have made mistakes in my life
That I just can’t hide […]
I’ve been searchin my soul tonight
I know there’s so much more to life
Now I know I can shine a light
To find my way back home […]”

- “Searching My Soul Tonight”
(Theme Song From Ally McBeal),
Vonda Shepard

A lot has been going on in my life recently; broad, abstract questions arising from small, specific (hopefully isolated) incidents. I know, that makes about as much sense as I feel my life does right now…

I was off school this past week, which was nice. I took a trip to see a friend that lives three hours away by train. I was excited about getting away, but came back exhausted and drained, which was my own fault. Between hormones, the weather, late nights, a wacky medication schedule, and train travel, it was just too much for my body to handle. I’m definitely flaring.

This chronic illness routine gets old really quick. It wasn’t so much that having to pack all of my medication was a pain, as much as I was surprised at how quickly I was able to forget that I needed to be taking it. Truth be told, my medication schedule has been pretty thrown off for about the past month. But it’s always sobering to realize what I would feel like without it. And so, while I was only going to be away for about two and a half days, I decided that it only made sense to pack a weeks worth of meds, just in case.

Being chronically ill definitely puts a damper on being spontaneous, and maybe that’s why I feel so ill at ease making plans not that far in advance. And maybe that’s why lately, any opportunity to be spontaneous is desired greatly and often regretted afterwards.

While I recounted for my friend some of the exploits of the past six months (late nights, tequila shots, etc.), her response was something like most of that doesn’t sound like you at all. Lately, I wonder…would I know a “me thing” if it bit me in the ass?

This profound crisis of identity that has been going on for the past year or so is really bad. And it needs to end soon.

When I think about the fact that I’ve only been in graduate school for a year and a half, and that I’ve only been dealing with illness for about the same amount of time, it’s sobering. It feels like decades have gone by. Not that I’m wishing my life away, but the sludge could sure move a little bit faster. When do I get to the good part?

Clearly, what I have come to realize, is that graduate school is not the place for self-exploration and self-understanding, not the place for finding oneself, and not the site for teenage rebellion that’s happening a few years too late.

This is not the time to “feel your wheaties” (of any variety). Those who party harder than they hit the books are shunned, seen as slackers. All that fun is kid’s stuff. That’s for college, not for graduate school. Even so, if you aren’t 100% committed, for whatever reason, there is definitely a learning curve. The thing is, getting into graduate school makes you think that the next five, six, or however many years it takes you to get a PhD are set. But sometimes, life has other plans, and it’s often difficult for graduate school to accommodate massive life occurrences, such as illness.

And maybe that’s why those of us who become academics do. While we thrive on asking tough questions about the world, we never seem to have the time or energy to ask tough questions about ourselves.

And maybe that’s what has been so difficult about the past year and a half in dealing with graduate school and chronic illness. The lingering question is not so much Why me?, but rather, Who am I and how did I get to where I am today? And does my current direction make sense with the curve balls that life has thrown at me?

Lately, my whole world is off kilter. I went to the bank recently and put money into an account that I had closed several months ago. Luckily (and surprisingly) getting the money into the right account was an easy fix. But come on, where is my head?

I’m rational and practical. I like order in my life. I think I’ve started to worry that I’m always the downer, the party pooper, the one sucking the fun out of life.

All this is to say that I feel like I don’t really know who the heck I am. Sometimes I feel like a chameleon, adapting to the wants and needs of those around me, and not to my own needs, wants, etc.

When I flare, I tend to retreat. The other day is a good example. I was flaring and feeling a bit off, so I never got dressed or left my apartment. But the truth is, I have dragged myself many places for others, only to realize that after, I’m even more tired and drained than I expected to be.

It’s difficult to try and explain to my friends how I feel on a day-to-day basis, especially considering how quickly symptoms come and go. And no matter how hard some of them try to understand, it often seems easier for me to follow their plans than try and explain why they won’t work for me.

On a slightly more positive note, I am excited to say that the paper I submitted to the American Sociological Association conference was accepted to the Disability and Social Life section, which is very exciting. But the thought of having to fly out to California in August for my first professional conference and presentation, and all of the illness-related complications that could ensue, is particularly daunting, especially considering what a shock to my system two days of traveling through Michigan was.

The whole point I’m trying to make here is that I’m not living my life realistically right now. At some point, exactly when I’m not sure, I decided to try and stick it to my illnesses and live the life I would be living if I wasn’t sick. But that obviously doesn’t work. I’m not sure when I made this shift, but I do have to wonder about the following: when does the power of positive thinking become denial?


  1. Leslie,

    Your last sentence really resonated with me, because I believe in positive thinking, but I also believe in acceptance. Some people in the chronic illness world see acceptance as quitting, but I think they are in denial. The truth is your life has changed, forever. That may suck, and you certainly have the right to grieve it and be pissed, but eventually you have to move on. It doesn't do any good to wish things were the way they used to be cause they aren't.

    That said you can find a new you who is different but wonderful. In fact, I think you are already doing that, you just don't realize it yet, thus the growing pains.

    Congratulations on your paper being accepted, that is terrific news!!! For now, try to enjoy it and not worry about the travel. You will face it in August and by then you will have more answers about how to travel and not bring on a major flare. So enjoy the moment without killing the joy with worry about what MIGHT happen.

    The truth is everyday is the good part, you just have to accept that things look different than you thought they would, but different isn't always bad - you might find it can be wonderful in ways you never dreamed of.

    I love your writing, it is so honest and so real. Thank you for sharing how you feel and what you are struggling with. We all go through these struggles and it helps when we share with one another.

    You are incredibly strong, smart and self aware - you are going going to be better than fine, you are going to be GREAT!

  2. It's journey, isn't it? No matter whether you're a healthy person or a one living with a CI. One suggestion is to try to separate out your "struggles" to figure out who "you are" from the challenges of learning to live with a waxing/waning illness.

    FYI - I completely understand your fear about the trip in August. I still have those concerns when I accept a speaking gig. Will I be able to do it? But Maureen is right in that it doesn't help worrying about it. WHen the time comes, you're now that much smarter about what you need to be prepared. And you'll do the best you can. That's all and a lot.

  3. Thank you, Maureen and Rosalind, for your kind words of encouragement! Always appreciated!