Thursday, September 12, 2013

Guest Post From My Friend Gwen

Gwen + Kayla at our
2005 college graduation

Note from Kayla: I'm delighted to have another guest post today, this time by my college roomie and dear friend Gwen. I am very aware that my disease affects not just me, but all of the important people in my life. Guest posts from these people offer a look at the disease and its effects from the outside. Here's Gwen:

(Author’s note: I’ve been working on this post for over a year—fitfully, not steadily. Rough though it still is, especially the organization, it’s time to pull the trigger.)

“Everything happens for a reason.” I’m guessing Kayla has been told this at least once regarding her MS. I’m not sure what her reaction was, but I know mine would have been one of frustration, if not outright hostility. There was a reason Kayla’s MS happened, of course. As for happening for a reason, I wish I could believe it, but I don’t. There may be a few silver linings to the cloud of MS—like every other cloud if you look hard enough—but I know that if I or anyone else who loves Kayla could disperse that cloud, we would do it in a heartbeat. If any readers out there are employers of the “for a reason” phrase, I hope you will consider retiring it from your conversational repertoire.

To my own faults. I have noticed a certain selfishness in myself when it comes to Kayla’s disease. It’s something I try to counteract, but I’m not always successful. For instance, here is a sentence from a previous version of this post:
I hate all the pain and problems the disease has caused for my friend, but I don’t think there’s any way around this fact: the effects I have felt the most have been on our friendship.
Is this true? Yes. I don’t experience Kayla’s pain, and I often don’t know what specific problems she is going through because unfortunately we haven’t had much time together or corresponded as much as we would like in the past few years. So the way the disease affects me the most is through stolen time and energy for each other. But why would I choose to write this in my one guest blog post when I could write so many other things? Also, the way I put it seems a bit cold-hearted. It’s okay that I feel what I feel, but I need to keep trying to empathize with whatever Kayla is dealing with, to put that empathy above the comparatively minor effects on my own life.

At the same time, I know Kayla hates to be defined by her disease, something I wouldn't like either. At the risk of sounding “poor me” again, it’s hard to find a balance between treating her like any other person in my life and making concessions for the MS. For instance, Kayla sometimes isolates herself from her friends. How much should I push her not to shut me out? I have no way of knowing if she’s being uncommunicative because she’s going through some bad side effects from a medication or something similar, or if it’s because that’s just how she is sometimes. Even if she didn't have MS, it wouldn't be right for me to be too forceful with these things, but the point is that yet another side effect of a chronic disease like this is that friends and family members fear to overstep boundaries and limits, or misinterpret the actions of the person with the disease. “Normal” is a slippery concept to begin with, but there’s just no way to have something like normal in many aspects of my relationship with Kayla.

This post has been a bit of a downer, so I’ll close with an item that’s random but keeps coming to mind when I think of Kayla. I have seldom seen Kayla’s love and devotion to music, books, and especially her family matched in anyone. She is a person who cares deeply. I feel lucky to have her as a friend.

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