Thursday, April 18, 2013

Alone In This Together

     I was just reading a post on a favorite blog of mine, Offbeat Home, and while not exactly relevant because I am not currently in the middle of a friendship breakup, it made the gears in my head start spinning. Not like they're not anyway, all the time, with absolutely no rest for the wicked, but this time I was able to get some fully-formed thoughts pulled from the din. With my husband as sick as he is sometimes, you'd think that I would require more venting sessions with friends than the average person, just to release the pressure every so often. Following that logic, the same theory should probably to my husband as well. He's got just as much to contend with as I do, if not more.

     The thing is, as much as I run my mouth, as good as I like to believe I am with words, when it comes to discussing the particulars of our ongoing war to live a normal life while contending with what the Marfan's is doing to my husband's body, I can't seem to find the right words. Not in person, anyway. On here? From the safety of my keyboard, I can go on for as long as it takes to quiet the storm in my head. I do the same with my journal, which is my equivalent of a security blanket, I suppose, and is never more than an arm's length away from me. I've filled enough blank books, large and small, slim and ridiculously thick, to fill a sizable wooden trunk that resides in our living room. Why, then, can't I get my mouth to work when it comes to flesh-and-blood interactions?

     I think it's a combination of causes, actually. The most basic of those causes is pretty juvenile in its logic - don't wanna. Essentially, I don't want to think about it when I'm out with friends. I want to be away, a normal girl with a normal husband who is not afraid that his INR levels have gotten way out of whack this month and will have to be corrected by screwing around with the warfarin dosage. I can't state enough how much his disorder latches its disgustingly unwelcome fingers into any and every part of our lives it can reach. Well, guess what, fingers? Fuck you, is what. No, you will NOT follow us to the bar this evening and you may NOT come on vacation with us. Except that somehow, they're always there anyway, waiting in the shadows to clutch and pull when we let our guard down for even a moment.

     Beyond the toddler-logic of "don't wanna, not gonna", is the fact that I have absolutely no idea how to bring it up to any of my friends. If they ask how he's doing, sure, I will gladly update them with as many details as they can stand. But to actually text or call and say, "Hey, I need to just chill somewhere and run some thoughts by you. Wanna go get lunch?" is beyond my social capabilities. I'm used to being the one who helps my friends and truthfully, it's a role I relish. I consider my friends the best of the best, because I try not to let people into my life who aren't genuinely good people, and I will do whatever I can to help them when they need me, even if it's just to listen to them go on about whatever's rattling around in their head at the moment. I like to help people in general and making life just a bit better for those I love never, never fails to make the world feel a little more right.

     I can't seem to allow myself to be on the other end of that conversation, though. I don't know if it's that I've got some stupid idea in my head that I'm the one who helps, not the one who goes to her friends for help, but there's definitely some sort of mental block there. Frederic, one of my very best friends, has been with me since we were seven years old and I can't even bring myself to call him and let it out. There is no major life event that's happened to one or the other that we haven't been by each others' side for and rare is the instance that I call him to chat about this stuff, even when I'm consumed by it and barely able to get my mind to move on to other things. What is that?!

     My husband is no better than I, by the way. I've heard his friends ask him, point-blank, how he's doing following a go-round with the emergency room and his answer is, inevitably, a dismissive "I'm good", or some lame-ass joke that is his attempt to downplay the whole thing. I know it makes him uncomfortable to discuss it and his friends pick up on that discomfort, so in an effort to be supportive and/or not make him feel worse than he already does, they tend to just let it ride. I also know that he too needs to discuss the ups and downs of his health with someone, but, like me, he has not the first clue how to begin that conversation and so holds his silence on the matter. This has the unfortunate effect of leaving friends and family feeling shut out of this part of our lives, which then leads to a greater sense of isolation and causes us to pull back even more from discussing anything Marfan's-related. It's just a lot of ugliness and loneliness and uncharted waters that feel like they're going to pull one or both of us down the minute we stop fighting to keep our heads up.

     And so we're left alone in this with each other. The honest truth here is that absolutely <em>no one</em> in our lives, save his new therapist, has the first clue what to say to make anything better. I don't, he doesn't, our families don't and our friends are, by and large, just as lost as the rest of us. I get the sense sometimes that our loved ones are hesitant to say anything at all, lest it be the wrong something and they end up as the offending party. Maybe that's a notion that my husband and I should try to disabuse them of, as I'm really starting to see that there is no wrong something. Maybe we should also stop being so self-conscious about the whole thing and treat it as just one more part of the day. Would that help with the blockage, perhaps?

     It would be so much easier if our friends sucked, or if I wasn't sure if they were willing to listen. Then I'd have an easy scapegoat, something I could point my finger at and say, "There, that's the problem and it's not me." That would be a lie, though. As I said before, in both my and my husband's case, we truly have the best when it comes to our friends. I know, because more than one has told me to my face, that I need only call and they'll come. My family is the same. I'm half a country away from her, but should I or my husband truly be in need, my sister Lizzie would find a way to get here, be here for us. My parents would, too, without question.

     I'm going to have to figure something out, though, because being the only one the other is able to talk to about this stuff is taking a toll on us, no doubt. It's a push-and-pull dynamic that can erode even the strongest bond over time. My husband and I are so close to each other, so much a team when it comes to his health and decisions that have to be made, that we inevitably start fighting each other for breathing room after awhile. It sometimes feels like being in the safest, warmest cocoon; just us against the world. Other times, it's like being locked in a coffin with someone who's fighting just as hard as you are to get back to the light of day. We can't keep that up forever without sustaining serious damage, I'm pretty sure.

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