Tuesday, December 27, 2011

All I Want for Christmas Is You

     You all know how excited I get when someone contacts me out of the blue because they've come upon my blog somehow or another. It's one of the reasons I started writing this thing in the first place, so that I could possibly connect with other partners who are on my side of the disorder that is Marfan's Syndrome. It's lonely and hard at times, not feeling like you have anyone to talk to who really gets what you're saying and is instead just making sympathetic noises. That's not to say that the friends and family I do discuss my husband's disorder-related adventures with are giving me lip service, because I don't believe for a minute that they are. My loved ones absolutely empathize with whatever it is I'm upset about in that moment. The key word, though is empathize, not sympathize, and the difference between the two can be profound.

      As much as I could never put a price on how much I value my circle of friends and family who help take care of me and my husband when it comes to dealing with his medical issues, I'm going to be extremely selfish for a moment and admit that I want more. Do I deserve it? Probably not, as no one is entitled to anything in this life and I'm already far and away better off than so many, just by virtue of being born in a first-world country. Political overtones aside, I feel I'm especially greedy in this wish considering that I've been blessed with so damn many people that I can open up to anytime I want. And I do mean anytime - I've had conversations with friends at 2 a.m. when I'm too bugged to sleep and they've always answered the cell phone for me. I doubt very seriously if that will ever change.

     What more could a girl want, right? A very specific type of sounding board in human form, as it turns out. As my husband's health declines and his disorder progresses, I find us both in increasingly uncharted waters and damned if I have the first clue how to navigate them. I question myself constantly when it comes to any decisions that I make about how to handle his various issues and he questions himself just as frequently. Each of us is not only trying to make the best decision for ourselves as an individual, but also as one half of a couple. It complicates and already-messy situation to levels that neither of us has any experience in dealing with and frankly, neither of us is at all sure of our footing.

     I really, really want someone who's in the same situation to tell me I'm doing a good job, that I'm helping my husband make the right choices and that I'm not completely screwing us both. There are so many facets of a chronic, debilitating disorder like Marfan's Syndrome and I swear we get presented with a new one every other month. There are physical aspects of it, emotional, mental, legal. There are issues I never in a thousand years would've guessed that I would be facing in my life and now they're a pervasive presence in my marriage and in my life as a whole. I'd like to think that I'm doing somewhat better than fumbling through, but I can't be sure and thus far, I've yet to find anyone who can reassure me otherwise.

      That's probably a bit elitist of me, actually, that line of thinking. After all, empathy counts for just as much, if not more sometimes, than sympathy does in a scenario like mine, doesn't it? I used to think so, but now I'm not so sure. Having lived this for the past two years and having a pretty damn good idea of what's coming up around the bend, I have to say that I'm at a point in my life where I need someone who can say they've been where I've been, exactly. I need someone who has seen/is seeing life through the same lens that I do on a daily basis and tell me that what I'm seeing isn't warped. I need someone to tell me that yeah, they've been there exactly and it's either going to get better once we get past this point or, alternatively, it's going to get rockier still and I need to batten down the hatches if I hope to weather the storm.

     Like a few of my other posts, I hesitate for awhile before pulling the trigger on actually posting this, because I know there's such potential for hurt feelings and that's the last thing I want. I eventually came to the conclusion, though, that those who are closest to me know me well enough to know that my words in no way mean they're not enough. They know how much they're loved and needed and that's exactly why they're the people in my life who are most important, because they know what they are to me. I'm also a firm believer that no one can be everything to someone and so you need a full cast of characters to fulfill all the roles in your life.

     I love my husband more than anything, but he's not my best friend. We're friends, yes, but there are things I don't go to him with, that he'll never understand. Likewise, there are times in his life when no one but Adam can really understand what's going on in his head. It's the same principle at work here, when I say that I need to find other Marfan's spouses to talk to. I'm a pretty articulate person even on my worst days, but this is like nothing I've ever experienced and there are some aspects that I just can't discuss yet, even though the words are there. Actually, that's only semi-true; I can discuss them, I just don't know with whom. To find that person would be such a relief, for both me and my husband.

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