Shedding Illness Baggage, One Layer At A Time

“[…] Open me up and you will see

I’m a gallery of broken hearts

I'm beyond repair, let me be

And give me back my broken parts

I just want to know today, know today, know today

I just want to know something today

I just want to know today, know today, know today

Know that maybe I will be ok […]”

- “Be OK,” Ingrid Michaelson

I can’t believe it’s almost 2010. What a crazy year it has been. And in the spirit of the New Year, I’m going to make this post a confessional, well, I guess, more so than usual.

I had anticipated taking a leave of absence winter semester. A lot of this semester has been spent getting advice and making decisions. And ultimately, I won’t be taking leave from my PhD program after all.

There was just no way to secure both money and health insurance, and I can’t really afford to be without either. And the alternative, of having health insurance covered, but having to apply for emergency grants while waiting for my SSDI paperwork to be processed, was not really a viable option. I fear that this situation would have put far more stress on me than staying where I’m at and doing the best with what I’ve got. This decision hasn’t been easy. But the prospect of filing for Disability at the age of 24 makes me cringe.

This is something I wrote, anticipating taking leave, and I thought it was important to share:

I need some time to regroup, (re)evaluate my priorities, and take stock of all that I’ve lost and gained in the last two and a half years. Because right now, most of what I’m seeing is the bad. And a lot has happened in a very short time, but not all of it has been bad.

For the first time in awhile, I’m not making the safe choice. I’m not staying in a situation that makes me unhappy because it’s easier to stay than to go. I’m letting go of everyone’s expectations, including my own, knowing that I will come out stronger, more focused and more determined, on the other side.

A lot of people have said, but you want your PhD, of course you’re going to finish. But at this point, I’m not sure that will happen. If I find that I am so happy being outside of this environment, maybe I won’t continue. I do want to get my PhD, I want to finish what I started, but not if it is both physically and emotionally detrimental…

So I’m not going to sit here and make false promises that I will take a semester off and come back refreshed and renewed. The time away may give me clarity that I have to go in another direction. It’s easy for people on the outside to make suggestions and give advice, but until you’re in a graduate program, you don’t know how much of a life commitment it is.

So, I guess I’ll have to find my clarity elsewhere… Okay, so here goes the confessional:

1. The combination of a friend in the program dying and my own hospitalization made me realize that this is not the life I desire. And this is not an environment I will be able to thrive in, given my health issues. I think that this is something I had known for awhile, but that I wasn’t really ready to admit to myself. But now that I have, I feel much better about my future in the program, a future that will hopefully be constructed on my terms.

2. In my recent posts on marriage and children, I’ve come to realize that these parts of my life are going to be complicated by illness. I don’t need them to be further complicated by a job that doesn’t allow me the flexibility to have a life outside of academia. I don’t think this makes me traditional… or a failure… In fact, such “epiphanies” have taken a lot of the pressure off of me. I no longer desire to compete for the top jobs, fellowships, etc., because I know I can’t. And I’m okay with that. I’ve realized that having a family is more important to me than I may have let on, and that in order to make those things happen, I can’t be in an environment like the one I’m in right now.

3. I have these really disturbing dreams where all my teeth fall out. Or my hair falls out. And I realize that this is symbolic. These are visible signs of illness. I get scared because everyone seems to think that my hair is one of my best features. But hair falls out. Lupus can make your hair fall out. Drugs can make your hair fall out. Hair gets gray and white. Hair is transient. I want to be something more than my hair.

4. Along similar lines, I confess that I’ve saved every prescription bottle for the last two years. My therapist, who I admitted this to recently, assured me that this is a “normal” coping mechanism for me. And that he’s not concerned. He says I’ll get rid of the bottles when I don’t need them anymore, when I have the recognition that I’m seeking. I guess when my illnesses mean something to more than just me. But I’m really scared that I’m never going to get it… The bottles are the tangible embodiment of my illnesses. Because most of the time, I look fine. They are the only reminder that anything is amiss. Of course my friends and my family acknowledge what is going on. But I worry that none of them really get it. Yes, I am more than my illnesses. But I am also a different person because of them.

5. I hate to remember the look on my parents’ faces, when they saw me in the hospital for the first time. Or the sound of my friend’s voice on the phone, when she finally got to talk to me. There was fear, but there was also a sense of helplessness, that even I as the patient, did not have. I’m sure I looked and sounded half dead. I certainly felt like I had been put through the ringer. And what I fear the most is that this is only the first in a long line of hospital stays in the name of “complications from lupus.”

6. I’ve become so hell-bent on giving people second chances that don’t deserve them. I’ve convinced myself that I shouldn’t begrudge other people their baggage when I have so much of my own. But in the end, I’m the one who ends up getting hurt. And all I’m left with are lame platitudes that don’t mean shit. How’s that for honesty and openness?

7. I can’t listen to the song “I’ll Be,” by Edwin McCain, without crying. Literally, every time. And I haven’t listened to Eric Clapton since, well, you know…

In the past few months, I have experienced some of my lowest points ever. I have cried more than I think I have in the last 23 years of my life combined. And at this point, I don’t think there’s a place I haven’t cried (coffee shops, the grocery store, etc.). I’m okay with this, but I think that for some people in my life, it is cause for concern. I’d be more worried if I couldn’t cry, if I hadn’t shown emotion towards all that has happened. People have died, people have walked out of my life, I survived my first lupus hospitalization. And when I think of all that has happened, I cry, because I’m not quite sure how I’m still standing.

More than remembering the things that have happened, I have accumulated an immense amount of baggage. And I think it is all illness-related baggage because everything in my life is intertwined with it. Along with the baggage, there are also holes. Holes in my heart, holes in my life that I’m desperately trying to fill. It’s a strange combination to be trying to shed layers and fill holes. And to think that every time I get hurt, I can’t get more hurt. And then I do…