Wednesday, October 27, 2010

The Power Of Transformation (Or, My Life In Plastic…Boxes…)

MAC Brave Red
(the name sold me)

 “[…] Feet on ground,
Heart in hand,
Facing forward,
Be yourself.
I’ve never wanted anything.
No I’ve, no I’ve, I’ve never wanted anything,
so bad...(so bad).

Cardboard masks of all the people I’ve been
Thrown out, with all the rusted, tangled,
dented God Damned miseries!!
You could say I’m hard to hold,
But if you knew me you know […]”

- “Good Mother,” by Jann Arden

I’m really trying to learn about myself right now. Part of it certainly has to do with the fact that I am about to embark on my dissertation, a project that will take years and boundless amounts of effort and enthusiasm.

In every meeting about it, the question on everyone’s mind is: will I be staying in Michigan the entire time I am working on my dissertation. My answer is that I don’t know. My boyfriend will be done with his research position in two years. He’s preparing for the next stage of his medical career, and will know a bit more about what that looks like in several months. I’d like to think that we will both be going to wherever he is. (Unless of course I barrel through and finish my dissertation by the time he is done and then it won’t be an issue at all).

I don’t think I thought of myself as the I’ll-go-where-you-go-no-matter-what type, but I despise the thought of a long distance relationship. Just from the short times that we have spent apart, I really don’t think I could do it for any lengthy period of time. It works for some people, but I don’t think I’m one of those people. And if I’m not planning on a top-tier academic job, I will have a bit more leeway in terms of my options. But the jury is still out about that, too. I’m trying to figure out exactly what kind of job I want.


I’m learning to compartmentalize. I had three sessions with a personal trainer. She did these stretches and I literally thought my leg was going to break, but I felt so energized the rest of the day. And the next day, I did a three mile walk. Then I was exhausted. I think this is a metaphor for my life, in general. There needs to be balance in my life. And the part I really want to control, whether I’m healthy or sick, is really the aspect that I have the least control over.

I’ve realized that one of the reasons I’m so inflexible is because whenever I’m in pain, my go-to position is the fetal position. But pushing my body to its limits made me realize that mobility really is good for the joints. It’s a catch-22, but I am trying to be more active.

Although it’s funny, because in trying to compartmentalize, the more and more various aspects of my life get woven together. Maybe this is a good thing?

If there’s one thing that lupus and rheumatoid arthritis have taught me, it’s to live out loud, to not hold back.

I recently bought red lipstick. And some crazy shoes. I’m not saying that every transformation should be physical and outward. In fact, most of mine has not been. But the red lipstick has been on my bucket list for years and years, I just never felt confident enough to pull it off before now.


I was recently going through some old things, realizing that I have organized my possessions in plastic boxes. It’s funny to take stock of the things that I’ve done in my life, the experiences I’ve had, and to have them cataloged in plastic boxes. All of these memories preserved, as if ready to be put in some museum.

I think that partially, this representation of my organized and anal side, has served a purpose that has gotten me through life, and through the beginning years of being chronically ill.

It’s rare that I don’t know where things are, and when I can’t find something I’m looking for, it can send me into a tailspin. So it makes sense that when I got sick and my world was unrecognizable, I demanded of myself keeping everything I could as orderly and together as possible.

But you can’t take the things with you…

So often over the past few years, I’ve found myself feeling restless, unwelcome, and out of place, like a stranger out of time. I no longer knew what had brought me to a top three graduate program in my field, or quite frankly, what I was doing with my life at all. Though a diagnosis of lupus and rheumatoid arthritis is not immediately life ending, it is immediately life altering.

Despite everything, I am moving forward and moving on. Despite how much the last nearly three years have been marred with pain, suffering, loss, confusion, and at least one million crises of identity, I’ve done it. And speaking of identity crises, please check out this great project that I am honored and excited to be a part of: Smart People on Bad Days. And check out my story here.

It’s about the fact that against the most formidable of enemies, I won.

But the enemy that I beat to get to the final stages of my graduate school career wasn’t illness. It’s not a fair fight, so I don’t bother battling. The enemy has been academia, and the doubters and naysayers that have gotten in my way, and made me question my place at this university, in my field, and ultimately, in the universe. The more I think about it, the more I also realize that the enemy was myself. I’ve been standing in my own way. And I finally got the hint and moved out of the way.

I haven’t felt this positive and hopeful in a long time. I haven’t felt that the future was worth making an effort for. But other things are going well in my life right now, too, and this makes me feel like somehow I’ve evolved beyond the person asking ineffective questions and trying to put things back to the way they were pre-illness.

But I am wise enough now to know that such efforts are completely and utterly futile. They won’t get me anywhere, and in fact, they’ll probably end up holding me back.

Here’s to looking forward to the next chapter…

Life is certainly different now than it was several years ago.

Yes, I can walk in these...

(And sometimes, retail therapy is just necessary)


  1. Oh, I love those shoes! I don't know if I could wear them, though. Are they really that comfortable?

    I'm also a red lipstick girl. I just started wearing it a few months ago, though I used to wear a burgundy lipstick. I love, love, LOVE bright red lipstick on me!

    I've been sick for (a little over) three years, too. (Actually, at this point, it's getting closer four, but let's not go there.) I still don't have a diagnosis, but my life has been changed drastically since the beginning of this fun and exciting journey. I've learned to compartmentalize, too, and to go after what I want. I'm loving my new live-out-loud attitude. It's a lot of fun, and so much more fulfilling than before.

  2. Hey I have these shoes too, in grey :) They have little snappy silver studs on them too... which I'm sometimes excited about, and sometimes not so much.
    Don't you love how my first comment on your site about lupus, when I have lupus too, is all about shoes?
    Hope you're having a good shoe and Mac lipstick day today :)