Friday, May 27, 2011

Sympathetic Noose

     The most interesting thing happened the other night. My husband and I were in our rec room, playing World of Warcraft, as we often do. (Hey, don't judge. Some couples go to the movies, some couples like to go digitally adventuring in the mythical land of Azeroth. We fall into the latter category.) He was in TeamSpeak (a software program that allows people to talk to each other over the Internet), chatting with his best friend, Adam, as he often does. They never really talk about anything of major importance, just day-to-day stuff, but since they live roughly fourteen hours away from each other, it's a great way for the two of them to stay in touch. Somehow or another, it came up that Adam was reading this blog and following along with my husband's many medical adventures. I knew he was, he'd mentioned it before, but it had never really been discussed at any length.

     It's important to remember that those two crazy kids have been friends for around twenty years and my husband considers Adam to be the closest thing he has to a brother. I know Adam knows and has known about the Marfan's, but I've not once heard them discuss it. Granted, whenever something like the squishing of the eye happens, he'll text my husband and ask how he's feeling, things of that nature. My husband will respond with a monosyllabic answer and then they're back to playing video games. I can't say I never thought much about this, because I turn just about everything over and over in my head until I've looked at it from all possible angles (whoo-hoo for being neurotic!), but it never stuck me as odd. It seemed very natural to the two of them, a pattern established long before I arrived on the scene.

     On this evening, however, Adam made a comment that caught my attention. (My computer sits on a desk right next to my husband's and I can hear everything that's said in TeamSpeak even when he's logged in and I'm not.) I don't know what prompted it, but Adam said that he usually doesn't ask too much about my husband's health issues because he doesn't want to make him think about it (presumably the Marfan's Syndrome) more than he already does and that he figured that if my husband needed to talk about something, he knew where to find him. Huh. When Adam said that, I was forced to admit to myself that his reason for looking at the situation the way he did was one that I, in all my turnings-over, had never considered.

     I had to stop for a moment and wonder if perhaps Adam was on the exact right path when it comes to dealing with my husband's disorder. Actually, I realized that his method of handling the Marfan's isn't that different from my own, when I really stopped to think about it. He knows it's there, that it can't be avoided and that it's as much a part of my husband as anything, but he also knows that it can't be the defining characteristic in my husband's life. I feel like so many people don't get that aspect of a chronic illness, that even though it's ever-present and can easily overshadow anything and everything else about a person, it's vital that you not allow it to. If that's the only thing you talk about, or even the first thing you ask about whenever you're playing catch-up, then the illness suddenly becomes this Blob-like thing that just engulfs everything in its path. Including the person who's trying desperately to remind everyone that there is a real live human being inside the sickness.

     So often, the first thing out of peoples' mouths when greeting my husband is, "How are you feeling?" Now, of course I'm talking about people who actually know us, not the random check-out girl at the grocery store. It's at first disheartening, then irritating, to realize that the Marfan's is the first thing that springs to mind for some, especially when the person in question is so very much more than a damn disorder. I know, "best of intentions" and all that, but come on, folks - does it always have to be about his latest brokenness?

     I'm of the opinion that Adam's approach to his friend's disorder is actually more compassionate than any other I've yet come across. Think about it - if you were sick with an incurable, degenerative disorder, would you want that ugly fact shoved in your face all the damn time? Doubtful. It happens so often, though, and people do it so thoughtlessly. More than that, though, they think they're doing the proper thing by asking after him every time there's an incident. And as soon as I wrote that sentence, I had to sigh at my own bitchiness of manner. I understand that, if we're strictly speaking of etiquette, the exact right thing to do is to ask after someone's health when next you meet. And maybe I am just overly sensitive to the questions because they're so much more loaded when they're directed at someone who's chronically ill. Argh. Do you see the mental tangles I'm dealing with here?

     Anyway, I think Adam's totally got the right idea here and it seems to suit my husband perfectly as well. I suspect that the reason he knew to take the tack that he has with my husband is because he knows him so well. I also suspect that it's because he views my husband the same way I do - a person who just happens to have Marfan's Syndrome, not a Marfan's Syndrome sufferer. There is a distinct difference between the two, as anyone in my or my husband's situation can attest. The straight sympathy, or worse, the pity, that some people have for my husband can be a smothering, strangling thing. Once again, I know that everyone has the best of intentions and their inquiries typically come from a place of genuine concern. Please know, though, that if I or my husband need to talk to someone about anything Marfan's-related, we each have people we can go to. We each have someone who gets it, who can make us feel okay again. We know where to go to find comfort that's not suffocating.



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