Friday, September 26, 2008

Try Not To Think About Before

If someone told you to try not to think about your life before this moment, would you know yourself?

It would mean you couldn’t base your identity on places you have lived or schools you have attended. You couldn’t figure out who you are based on things you have enjoyed doing. Past jobs, whether you loved or hated them, would have no weight. Talents you developed would have no meaning. Your relationships with people couldn’t shape you. Even goals you had set for yourself, ambitions you might have had, would be outside the scope of consideration. Would you know yourself? Without looking back, would you know how to go forward?

Try not to think about before.

I think those words are probably the most daunting advice I have ever been given. Not to mention potentially the most terrifying. And yet, at this point in my life, those words may also be the best advice.

I was recently diagnosed with rheumatoid arthritis (RA). RA is a chronic and systemic autoimmune disease. Basically, it means that my immune system has decided my own joints are the enemy and has started to attack them. Joints all over my body are inflamed and painful – from my fingers to my knees to my toes. RA is a chronic disease because it continues indefinitely and the symptoms may never go away. It’s a systemic disease because it can affect multiple parts and organs of my body. It’s also a progressive disease, meaning it keeps getting worse and can potentially cause total joint destruction and functional disability.

Apparently, RA is relatively common. Depending on the source anywhere from 1.3 million to 2.1 million people in the United States have RA. While it can affect anyone, including children, apparently the disease has a preference for women, as 70% of people with RA are women. Onset ordinarily occurs between 30 and 50 years of age, so at 25 I guess my body just thought it would get a head start. And RA is more than just a little joint pain. It can result in stiffness, muscle pain, joint destruction, and a substantial loss of functioning and mobility. People with RA often suffer from fatigue, weakness, loss of appetite, and depression.

To fully understand the impact that RA has had on my life, things that happened before this moment are relevant. I have always had an extremely active and busy life. In high school I made the varsity water polo team as a freshman and was the league MVP by senior year. I attended an Ivy League University, studied abroad in Japan and Australia, and graduated with honors. I’ve traveled to all fifty of the United States. And for the past two years I’ve been enrolled in a dual degree graduate program, pursuing a law degree and a masters in environmental policy. I’ve earned straight A’s in the graduate school and I’m in the top third of my law class. I’ve never had a C on a transcript in my life.

Last semester alone I did about three hundred things at the same time. I took 15 credits, which consisted of three law classes and two graduate classes. As a member of the law journal, I cite-checked and proofread several articles. I researched and wrote a 46-page award-winning student note that will be published in an upcoming edition of the journal. I also worked part time for an environmental research center, where I put out three editions of our bi-monthly e-newsletter: generating content, proofing articles, setting up the layout, and doing web design. I also worked as the events coordinator for the research center and organized three events last semester, each attended by more than 300 people. One of the events was a debate between Colorado’s congressional candidates. Then, just for fun, I became the only graduate student on the University’s women’s club water polo team.

This semester is a totally different story. It takes a great deal of effort just to get out of bed in the morning, and some days I feel like I’d rather not bother. I spent the first month of the semester totally avoiding people because I couldn’t handle answering the inevitable “how was your summer?” question. I’m only taking 10 credits but I already feel like I’m drowning. I’m so exhausted and the pain is so distracting that I’m having trouble keeping up with the reading or even paying attention through an entire class period. On Wednesdays I have 3.5 hours of class in a row and I have to go home and take a nap afterward. I quit the law journal. I gave up my job as events coordinator at the research center. I’m still working as the newsletter editor, but I’m only doing one issue this semester and I’m getting considerably more help with it.

The three blocks between my house and the bus stop often feel like too much for me to walk. My hands are already hurting from typing this post. My boyfriend and I have been wearing matching rings since 2005, but mine doesn’t fit on my swollen finger anymore so I have to wear it on a chain around my neck. One of my friends is helping out by hiking with my 1.5 year old puppy, because I can’t give the puppy the exercise she needs, but I can’t help feeling a twinge of regret every time the puppy seems happier to see my friend than me.

There is no known cure for RA. Treatments exist to slow the destruction of my joints and lessen my pain, but my rheumatologist says it may take months to identify the right one. And there isn’t an instruction manual for how on earth you are supposed to function in the meantime. So while I know my condition won’t always be as bad as it is this semester, I’ve also come to realize that RA is going to require me to substantially change the way I have been living my life.

However, that seems easier said than done. At least in part, the pieces of my life up to this moment have seemed to define me: the schools I attended, the grades I got, the things I was good at, the activities I enjoyed, and the goals and ambitions I had based on all of that. But no matter how hard I wish not to be true, a lot of those things just aren’t possible any more. At least, not in the way I thought they would be. I have to reevaluate all my choices. I have to find a new way. But if I keep thinking about all the things I feel like I have lost, I may literally drive myself crazy.

So, I’m going to try to take my life one day at a time. I’m going to try to figure out, step by step, what I really want and what is actually possible. I know that RA isn’t the end of the world. It isn’t life threatening and it could be a lot worse. But it could also be a lot better. And I have to figure out how to make it better. Even if my hands end up hurting from typing this blog, I think it might help me figure out how I’m supposed to get through all this.

I’m going to try not to think about before. From this point. Forward.


~kelly marie~ said...

It's almost as if we are living the same life in parallel universes. Every word you wrote I can relate to. I've been "trying not to think about before" for five years now. I think I'm finally developing the maturity you already have to do it now. So I will go forward with you too. Thank you for your inspiration.

~Mariah~ said...

Luckily for me, Kelly, we are living in the SAME universe and so I get to have your shining example of dealing with adversity to fall back on when I am feeling down. Because I'm not sure I would have been able to deal with this RA diagnosis at all if it hadn't been for the inspiration I already had from you. So I think you're right - let's go forward together!

~kelly marie~ said...

I can't tell you how much your comment has meant to me. Most people in my life see me as weak and failing, so to see your words really lifts me up and helps to me move forward. Thanks for being a wonderful friend.