Thursday, April 12, 2007


For the past week and a half or so, the MS has been very distracting. Usually I can mostly ignore it, even to the point that recalling I have MS is somewhat of a surprise, but occasionally the symptoms take on the guise of a clingy, demanding child. It's a struggle to focus on what's going on around me, because all I can hear is the white noise racing up and down my nerves, tugging at my sleeve. I want to push this mewling thing away so I can concentrate. Impossible, of course. It adds an extra barrier to outside interaction that is hard to explain -- I feel like I'm viewing the world through a thin layer of oil. Life has taken on a slightly dropsical quality.

One of my favorite manga series revolves around the premise that eating a mermaid's flesh will either make you immortal... or turn you into a disgusting watery ogre. Sometimes I feel like one of those ogres, lurching about, dripping slop everywhere. My body is insisting to me that my back is split open and oozing something cold and gelatinous; it's very clear on this point. I fully realize this is just dysesthetic nonsense, but it's difficult when talking with people to shake the notion that my back is busy vomitting up my insides in the manner of a frightened sea cucumber -- hard to imagine that they can't see it to the same extent that I can feel it. In my mind, I'm walking about hunched over, leaking gel like a broken cold pack. I keep waiting for someone to tell me I've soaked through the back of my shirt, the same way you'd tell a person she has pepper in her teeth.

When I first was diagnosed with MS, I didn't understand how enervating it would be. It takes more energy than you'd think to pretend your face isn't crawling with caterpillars, or to ignore the fact that an icy-numb chest makes it feel like you aren't wearing a shirt. I keep absentmindedly rubbing at the numb and tingly parts of my face and neck, actions only brought to my attention when, at the visa window, applicants subconsciously mimic my movements. It's awkward spending time with people: I've tried explaining the problem now and then, but it makes the other person so uncomfortable (and in all fairness, how do you respond to a comment like, "sorry I'm so distracted; it feels like I have no skin"?). So I generally don't mention it, though watching me twitch for no apparent reason really isn't any better. As a way of avoiding the problem altogether, I've taken to doing most things alone. Which is good, since I was so excessively outgoing before. Lucky for me MS put the brakes on my rampant social activity before it got out of hand.

Sometimes the situation has a certain "Flowers for Algernon" air to it, but mostly I'd say I've gotten pretty complacent about the whole affair -- almost impatient in a way. If I'm going to sink into the muck, I'd rather just dive in head first and get it done with.

Well, anyways, I'm sure it'll be better next week.


Geraldine said...

Katie, you have the most amazing gift of being able to not just explain in facts, but to put us in your 'skin' so to speak. I am in awe...that you can do this and that you are coping with these symptoms, hard as it is for me to read and accept.

I am very proud of you. You are an exceptional person. I love you.

Anonymous said...

You inspire me. I love the way you write. I love the way you share. I love the way you taught me about the foreign service before I started (though not with the US). Please don't ever stop. I won't stop reading.

- A

Brooke said...

Wow, you are STILL leaving us hanging! I can't wait for the next episode after that last post.

mike said...

I agree with all the others... you are an inspiration, no doubt about it.