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.

Monday, April 15, 2013


     Oh, Jesus, it's been too damn long since I sat down to get something out. So much has happened, is happening, is going to happen that my poor brain just canNOT keep up with it. I'm feeling simultaneously happy and semi-bummed and excited and anxious and it's going to do bad things to my equilibrium if I'm not careful. The truth about why I haven't been posting very much is because I've gotten in over my head with the technical side of having a blog and I'm still trying to repair the damage. Basically, I switched over to WordPress, thinking that was a good idea, and now I have no idea how to get my domain name routed back to my Blogger account. I'll probably end up calling Google's support team and driving them crazy for a half-hour or so, but hopefully, I can get it all sorted out. In the meantime, if the blog looks weird to you if/when you manage to get here, just...shake your head at my stupidity and wait it out, okay? Thanks.

     So much good has happened in the past couple of weeks and you'd think that would make me happy, nothing but. Unfortunately, I am a far more complex creature than that. I was offered and accepted what's basically my dream job, which is more than I could've hoped for in this job market. I mean, I considered myself lucky to have a full-time gig in the first place, even if it wasn't exactly what I wanted to do with the rest of my life. And then, by some miracle, I was offered a job as a legal assistant working Social Security Disability Insurance cases, among other things. Not only is it the exact type of law I had my heart set on when I went back to school to finish my paralegal certificate, but it's a two-lawyer firm set up in a big, beautiful old house within spitting distance from my front door. It couldn't be any more perfect.

     I'm simultaneously off-the-wall excited and hideously nervous about my new employment, because of the same root cause - I will be directly affecting (hopefully in a positive way) permanently disabled peoples' lives. While it's without a doubt what I want to do with my life, it's also a daunting task because so much rides on every little piece of the puzzle. I know, I'm not the attorney, so ultimately, it's not in my hands as to what the final outcome will be in any given situation. I can tell you, though, that anyone who thinks a paralegal or legal assistant is just a glorified secretary is dead wrong. I'll be the first one to lay eyes on some of that information, and what if I miss something vital? Worse, what if I miss a deadline? The legal world is often an unforgiving one and there's very little, if any, room for excuses. Customer service this ain't.

     I also got some of the best news I've gotten in awhile when my friend Carrie texted me late Saturday night to tell me that she and my husband's bestie Adam were officially engaged! It was one of those moments that just makes you stop and smile and think, "Yeah, life can be so good sometimes." It was something that I had been quietly hoping for for awhile now, though I had never given voice to that wish, fearing that if I did, I'd jinx it and not see things work out as I wanted. I know that sounds vaguely creepy, considering that I'm talking about someone else's life and not my own, but sometimes, you just want what you want. In any case, I somehow got what I wanted. And now that I think about it, I wonder if this means she'll be my sister-in-law of sorts, since Adam is the closest thing my husband has to a brother. Huh. Things to ponder.

    As good as both of those things are, though, I think the very best thing came just before noon today, when my husband texted me to tell me that he'd seen his newest doctor and things had gone well. Before you question why this should-be-mundane item got me all kinds of happy in the head, let me clarify - my husband's newest doctor is a psychiatrist. This is a huge (and hugely sensitive) issue for my husband and I, one which has been causing massive amounts of heartache over the past couple of years. I mean, seriously, it's been a dirty, poisoned knife in our combined side for longer than it hasn't been. The fact that we've taken the first step towards extricating it and stemming the flow of blood from our marriage gives me a sense of hope that's been missing for too long.

     I don't think I'm ready to say more about that particular manifestation of my husband's disorder just yet, mostly because it's such a raw nerve, for both of us. The truth of the matter is that neither of us, nor anyone close to us, is properly equipped to deal with the psych end of chronic illness. To further muddy the waters, it's been a bitch and a half to find someone who's both a) experienced in dealing with depression as a symptom of an underlying physical disability and b) someone my husband actually likes enough to talk candidly with. I may just be setting myself up to be kicked back down, but I'm cautiously optimistic that we may finally have a winner.

     It's a lot of change at once for someone who is such a creature of habit, and I think that's why I'm feeling shaky and overwhelmed at the moment. I'm going to get to go back to Missouri for a few days next week, though, and that should settle things a bit. I'm also supposed to stop by my new office on Thursday so I can take the grand tour and get a little more familiar with the place before I jump right into my work. That should help, too, and it speaks well of my new boss that she would be so thoughtful as to not want to overwhelm me on my first day. I have every reason to believe that this place will be a great fit for me.

     I feel like I should say that all this goodness means the tide is turning, or we're turning the corner, or some other cliched "don't-worry-be-happy" platitude. While that cautious optimism is definitely there, it's a very cautious optimism, almost to the point of being fearful. I know that's no way to live, no way to look at things, but I guess I'm not strong enough yet to just throw every caution to the wind and leap headlong into the light. I mean, yeah, it feels like the sun this time, but that same light has turned out to be, in the not-too-distant past, the fucking headlight of a train rushing to flatten both my husband and I. I'll know which one it is soon enough, most likely.