Wednesday, February 16, 2011

Inquiring Minds

     When my husband has to call into work (and he does this more frequently than most), the first thing most people ask me when I get to my desk that day is, "Oh, no. What's wrong with him?" Usually, people call in because they have the flu, a cold, or something run-of-the-mill like that. So how am I supposed to answer the inquiries? Do I tell them the truth, that the muscles in his back were cramped and causing such spasms that he couldn't get out of bed? Or perhaps that he was having head rushes so frequently that it was difficult to stay upright? Um, no.

     It's another aspect of living with someone who is chronically ill that you don't really think about until you're in it. What to reply to a well-meaning question (a very common phenomenon, I might add!) becomes an exercise in frustration. Should I answer honestly? Well, let's look at the repercussions from that one.

     Honestly, some people don't want or need to know that much information. They want to know that it's a cold or something equally common that they can relate to and commiserate about. They don't want to hear that he's out sick due to ongoing Marfan's symptoms. The vast majority of people don't have any idea what that is and then either get curious, in which case I have to go into a lengthy it's-a-genetic-degenerative-disease explanation, or they just tune out because they never wanted to know that much in the first place.
    And yet, I find myself often telling the truth about what's caused his absence, even though I know he doesn't like it. My husband, you see, does not like to draw attention to the fact that he's different. His physical appearance already causes him to stick out in society and he'd rather not be pitied as well because people know why he looks the way he does. While I understand and empathize with that, I'm looking at the situation in a different light.

     As his spouse, the one who loves him more than anything, the one who doesn't know how she'd keep going if something happened to him, I HAVE to look at it differently. I want everyone to know exactly what's going on with his heart, with his back, with everything. I want to take care of him and protect him from anything that could cause him harm. I can't be there all the time, though. Even though we work together, we don't always work the same schedule and so there are days when I can't be there to remind him to please not try to carry multiple pieces of heavy computer equipment down two flights of stairs.

     It's because of this, and because of the fact that he is slowly getting worse, that I pushed and pushed until he disclosed the full truth of his illness to our boss. I know he didn't want to, but I guilted him into it by reminding him that his life was not necessarily his own anymore. He's fond of telling me what I can and cannot do, because "What would I do without you?", but had such a hard time understanding where I was coming from with this.

      It's better now, once he actually talked about it with our supervisor. It's not quite the big deal that he was afraid it was going to be, but it does make life a little better and easier, because they know that he's got to move a little slower sometimes and he's not the one to go to when they need things moved around.

     As much as I've thought about this issue, I've still not been able to come up with a hard-and-fast answer. I can only take it on a case-by-case basis and it depends on who's asking as to what answer they get. I don't really have a better way to handle it at the moment and I don't know that there is a better way. I think it's another one of the hundred of things that I'm just going to have to figure out as we go along and hope I get it right.

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