Thursday, June 16, 2011

What You Never Know

     The other day, when I was bopping around the internet looking for information to use in my last post, I began to see just how much I don't know about Marfan's Syndrome. I mean, he's always been honest with me whenever I've asked him a question about it and I know how to use Google as well as the next girl, but there's so much that I somehow skipped over in my searches. There are some things that I'm actually embarrassed to admit that I didn't know, like what an aorta actually is. (I knew it was attached to/part of the heart and that it was very, very bad if it got damaged, but I didn't know what it really was.) Wouldn't you think that little details like that wold be important for someone in my position to know?

     That's not to say that I just run off at the mouth without having the first clue what I'm talking about; I don't. I know that my husband was born with a degenerative genetic disorder, I know it could've been a random gene mutation that caused it or it could've been hereditary, I even know the name of the specific gene which mutated and is causing all the issues. I promise you, I'm far from uninformed on this matter. I have to admit, though, that I skipped over a lot of the details.To be fair, there are A LOT of details to skip over, but still.

     I'm a curious person by nature, so whenever I'm looking up information on something, I tend to dive deeply into the subject until I can absorb no more information. I think this is a little different, though, and what kills me is that I didn't even realize what I was doing until just now. On one hand, I want to know as much as I possibly can about Marfan's and what it does to someone and what possible complications could arise as a result. Obviously, I also want to know the best way of handling any potential medical issues that pop up so that I can take care of my husband the best that I can.

     I want to read everything I can find (which is a frustratingly small amount, let me tell you) so that I know what's going on with my husband, health-wise. I never thought I'd been in this position when I envisioned what my married life would look like and the fact is, I'm looking for guidance. As I've mentioned before, I feel sometimes that I'm flying blind and I think my husband feels the same, to some degree. He's never known anyone who has anything similar to his disorder, so really, he's just as much deal-with-things-as-they-happen as I am. If that's how we're going to live, then I want to be as prepared as possible when it comes time to make decisions that I'm not really qualified to make, but have to anyway.

     The flip side of all this is the fear factor. I read some really, really scary stuff the other day, a lot of which I now wish I didn't know. I figured out exactly what an aorta is and why we should be so damned afraid of it rupturing. I also read about all the other bad things that I knew were possibilities, but never allowed myself to consider overly much. If you don't get too in-depth with your research, it's easy to say, "Well, sure, that happened to that Marfan's kid, but that was a freak thing, not a common one." Except for when you start reading story after story of people it actually happened to. Read enough stories, you start to realize that it can happen to your Marf, too.

     As much as it scares me, I can't hide my head in the proverbial sand here, which I was apparently doing without even realizing it. It shames me, quite a bit, to know what was going on. I'm someone who takes pride in my desire to learn and educate myself about all manner of things. So now, when it really matters, what did I do? Allowed myself to skip over so much of what's out there for me because I didn't want to deal with it. That's not me, not my way of dealing with things. In this case, the old adage, "What you never know won't hurt you," is dead wrong, because what we as a couple don't know about Marfan's could very well kill my husband.

     I think, "What you never know won't scare you," or some variation thereof is what was floating around at the back of my head. It's still there, actually, if I'm being completely honest. (You don't magically get rid of that stuff just because you acknowledged its existence.) I don't want to think about my husband dying, don't want to think about the millions of extra things that could go wrong because of a stupid genetic mutation that no one had anything to do with. That's ridiculous and selfish, though, because lots of people have to think about things like that everyday. I do believe I've even mentioned before that avoidance of such issues is a pet peeve of mine. So maybe I need to start taking my own advice and learning how to deal with my fear instead of pretending it's not there, because it so clearly is.

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