Thursday, June 2, 2011

Best of You

     There's a feature on this blog that allows you to see the various statistics related to the audience. I can see how many people have looked at my words today, which posts they've read, from which countries they're doing their reading and so on and so forth. It's vaguely creepy, knowing that much about the seemingly anonymous internet crowd, but I kind of like it. I like seeing that other people in random parts of the world, like Russia, can relate to what I'm talking about, that they find it interesting. There's also a feature that shows me what phrases people put into Google and end up here. I always like to check that stat in particular, because sometimes people google the damndest things. Two days ago, though, I checked it and found that someone out there in the great wide world had used the phrase, "Marfan's I hate my life". Oh, God...

     As I've said so often before, my husband and I are on different sides of the same issue. He is the one who was born with Marfan's Syndrome, I'm the one who married into it. It follows, then, that our perspectives and our experiences don't always line up exactly. When I saw this phrase, I immediately felt pity (which is the thing my husband hates most) and sadness for whoever it was that typed it in. How much does that break your heart, to know that there's someone living among the billions of people on the planet and they still felt so alone that the best they could do to find comfort/answers was to turn to a fricking search engine and hope something popped up?

     Even having seen my husband at his low points, when the magnitude of what he's dealing with and what's coming just presses him into the ground, I still can't understand what it must feel like. The real hell of it is, as low as my husband has gotten since I've been around, I know it's not even the worst of what he's felt since he found out about the disorder. I can only imagine what those times were like for him and wonder if that's what this nameless, faceless character is also feeling at the moment. I wonder if it genuinely gets better for them, or if the bad thoughts just abate for periods of time and then creep out from the dark corners when the guard is down.

     I remind my husband with some degree of frequency that he is much more than the Marfan's and most days, he knows that. He still has days, though, when he feels worthless and broken, a burden to society at large and mostly to me. Those days? Doesn't matter what I say or how often I say it - he feels what he feels. I sincerely hope it's not the same for my mystery reader, but I have a suspicion that it is. I have a sinking feeling that whoever typed that it is younger than my husband, perhaps someone who just found out and hasn't yet learned to cope with everything they can now not do. Maybe it's a teenager who's relentlessly and unmercifully taunted for their physical appearance, for the skin-and-bones look that they're involuntarily sporting.

     Or maybe not. Maybe it's someone who's a bit older and perhaps has never had a relationship with someone who understood the delicacies of a degenerative disorder and thus they have no one to talk to about the strange and sometimes frightening thoughts that surely must be running (screaming?) through their head. Maybe it's someone who's older still and is now wheelchair-bound because their spine can't hold them up anymore and the loss of freedom is something they've not yet be able to cope with. Or maybe all of these dire assumptions are wrong and that phrase was put in by a bratty, well-to-do teenager who just doesn't like the limitations now imposed on an otherwise carefree life.

     I'll never know the person who typed that, never know if they found any comfort or sense of hope in my publicized thoughts, never know if they ever come back here. Strictly speaking, I don't really write for people who have Marfan's Syndrome - I write for the ones who are in love with them. However, I do believe that my blog could perhaps inspire some hope, seeing as how this labor of love can be seen as proof positive that life can and does get better. My husband has told me on many occasions that while he may physically be getting worse, in a lot of ways that matter very much, his life has improved over time. He's learned to deal with his disorder, to not fight it or push his body to do things he knows it won't do. He's nowhere near full acceptance of what is just yet, but he's definitely made progress down that path.

     I hope the person who typed, "Marfan's I hate my life" does come back to my blog. I want desperately for them to know that I don't think they've even begun to hit the good stuff in life. Yeah, it's going to be a little different for them and for the ones around them (as I can attest), but it won't be as bad as you think. And yes, I'm not the one who has Marfan's, I can't know what it's like, so on and so on. You're right; I don't know what it's like to be betrayed by your body and never be able to walk away from the sickness. I would counter that with the argument that I can't walk away from the sickness any more than you can. We're equally bound to it, albeit in different ways - you can't physically remove yourself from your body, I can't imagine how I'd survive without my love, my husband. Bottom line, as I see it? This disorder doesn't have to get the best of you and unless you allow it, it cannot get the best of you.

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