Tuesday, December 29, 2015

Oh, Darling

     It feels like it's been forever since I sat down to do this. Nothing has felt settled for months now, not since leaving North Carolina in July. A huge part of that unsettled feeling was because my husband was still there, until about three weeks ago, while I've been here in St. Louis, trying to get us re-established in the Midwest. He's here now, in the place that he considers home, even though he was born and raised half a county away. Home, to paraphrase that annoyingly catchy hipster song, is wherever we're with one another, and we've both been away from it for too long.

     We're currently in the process of setting up our cozy little apartment, getting re-acquainted with semi-communal living after half a decade in rental houses. As I struggle to get the right words out and in the proper order, I'm realizing that I need to get re-acquainted with this as well, because it's, as always, a more important part of my well-being than I realized. It keeps the ugliness, the worries, the parts of my life that are less than good from overtaking the wonderful parts. It's so, so easy to lose focus on everything else and get lost in the fog of, "Well, now what are we going to do?" I hate feeling lost, and though I haven't felt that way in awhile, I think I did lose sight of the ones who do.

     The last blog entry I posted was in the middle of October, right before I did the Marfan Walk for Victory. It's the first event like that I've ever attended since I started dating my husband, and while I think it was a good thing, and one that I/we need to do more often, I didn't quite feel like I belonged there, not like I do here. I'm working on changing that, but the fact remains - I've neglected my tiny corner of the internet, which, despite appearances to the contrary, matters to more people than just me.

     I found two comments on a couple of older posts a few of weeks ago, both from the same person, and they wrenched my heart a bit, because I know the feelings behind them. I am that girl, the one who has a partner who means the world to her, a soulmate who's slowly (and, occasionally, faster than I can keep up with) breaking down thanks to bad genetic luck. I'm the one reading anything, everything, until her eyes are dry and bleeding, in hopes of finding some good news, but coming up empty-handed. And that right there is the whole fucking point of airing my dirty laundry - I'm trying to keep others from those futile searches.

     You (yes, ma'am, I mean you who posted the comments) said that something's gotta give in your life - it will. I can't say that it will be a good something, because in my experience, it gets worse before it gets better. Example? My husband and I are currently in a "worse", waiting for it to get better. He was supposed to start his new job two weeks ago, but thanks to administrative forces beyond our control, it's been postponed twice, and by the time he does finally get to start, we'll have been on only my paycheck for a little over a month. Not the best position to be in under normal circumstances, but when you factor in that we now have to pay for a month of COBRA along with all of his regular monthly medical expenses, it starts to get ugly.

     I know that if we just wait it out, though, the pendulum will swing back the other way. I also know that sounds like I'm being blindly optimistic, but I swear I'm not. (Mostly because no one who knows me in real life would ever use the word "optimistic" to describe me. Ever. Even on my best day.) The thing is, if I've learned anything since my husband and I have been together, it's that the universe seems to pull us back from the edge every time we think we're about to go flying off of it. I don't know how and I don't know why, but it does; that much I'm sure of.

     You also mentioned that reading about this is easier than talking about it. That, I absolutely understand. I mean, not only do I write this blog, but I carry around a journal thick enough to knock somebody out with, because there are times when I just can't concentrate on what I'm supposed to be doing, and I have to quiet the roar to get anything accomplished. Even now, I'm sometimes self-conscious about speaking to anyone about my husband's disorder, because what if they don't care? What if they're just being polite and didn't really want to know the nitty-gritty? So, I write, because that's a much less obtrusive way for me to handle it. This way, if someone gets TMI, they have no one to blame but themselves.

    More than anything, I wish I could make it better for you. I wish I could tell you that it gets easier, but I don't believe it does - I think you just constantly adapt to your environment. You're probably going to hit a point that you think has gotta be the wall, the break-point, your absolute limit. It's not, though, not in my experience. My take on it? You don't have an absolute limit. (Which is a thought both awesome and terrifying.) Every time I've been where you are, that feeling of "I can't do this anymore, I canNOT get my teeth kicked in again," I've somehow come out the other side of the tunnel. And since we're being honest here, I'll just throw it out there - no, it's not my "faith" that's sustained me. I'm agnostic bordering on atheist, as is my husband. We are what got us through, with a kick-ass support system comprised of our families, friends, and co-workers.

   Also? Sometimes strangers that I've connected with through this blog. They find my ramblings and reach out to me, and if we're lucky, we're able to carry each other through. I can provide that for you, a place to come and read and hopefully feel the comfort of knowing it's not you against the world - it's us. It's a tiny, tiny, tiny light in the dark, like, a dying-lighter-flame-sized light, but sometimes that's enough.