Sunday, March 16, 2014

Jesus Christ Pose

      So after I discovered those semi-unkind words yesterday, I thought that a blog post, a long drive and some time spent talking about it with my husband would get it out of my system. Yeah, not so much. It bothers me, the judgment that others so freely passed on my decisions regarding the best way to handle my husband's frequent emergency room trips; I thought the point of the exercise was to find and support one another. There were dissenting voices, of course, ones who seemed to understand what I was trying to say. Essentially, I believe that figuring out how to deal with a chronically ill spouse is something the only the ones in the relationship can really make the call about. No one else is that close to it, no one else really knows all the repercussions, or what works best for the other's state of mind.

     I talk about it because I want to help other people in the same situation as me not feel so alone, if that's indeed what they're feeling. I talk about it because it's nothing to be ashamed of, and maybe the next guy down the line doesn't quite have the words to explain what's going on in their head. Okay, borrow some of mine. I talk about it because if I don't, I would have lost my mind and my ability to cope a long damn time ago. Also I have a lot going on in my head at any given moment and if I didn't let it out here, I'd just find someone's ear to bend with all my noise. This is really the better option for all parties (potentially) involved.

      I'm not a stupid girl. I know and have known since whenever that the world is comprised of 8,000 different opinions on every topic under the sun; as I've said before, that's the way of the world. However, when confronted with the goddamn self-righteousness that I felt seeping from some of the comments about an earlier post of mine, I couldn't shake the disgust. Really, you're going to sit in your ivory tower and "pray for me", that I might realize the error of my ways, which I will surely come to regret? I'm inclined to tell people like that exactly what they can do with their prayers, but that would be rather impolite.

     Instead, I'll ask them to climb down off their cross for two fucking seconds and consider, just for a moment, that the motives behind that way of thinking might be something less than selfless. I can only speak for my situation, for what my husband and I feel about the matter, but I doubt very seriously that we're alone in our thinking. Let's look first at the idea of "in sickness and in health". Simple words to most, a phrase in many marriage vows that most don't even contemplate, even as they're saying them. What do they really mean, at the bottom of it? Stand by one another when they're not feeling one hundred percent, take them to the doctor when they've got the flu, that sort of thing? Yeah, for most. It's not even the tip of the iceberg for couples like us, though.

     To go into that concept too much more deeply would change this post, because it's a complex issue, but suffice it to say that I think that phrase is naive at best and setting people up for failure at worst, because the sickness part of the equation can wreak so much more havoc on your life that you ever dreamed. It's nothing like what you think, not even me, someone who knew her soon-to-be-husband was chronically ill. There's no way you can possibly know what you're signing on for and when it hits the skids, you either hold onto each other, or you let go and hope you land with most of your pieces still intact. Luckily, my husband and I have so far opted for the first option.

    The reason my husband and I have decided that it's unnecessary for me to accompany him on each trip actually has a lot more to do with him and his well-being than it does me. Yes, I fully admit that the desire I have to stay in bed and get what sleep I can on nights when I have to get up at 6:30 in the morning in order to be at work on time. I also admit to not wanting to get up and sit in the cold ER room, getting in the nurses' way and struggling to keep my eyes open. But do you know what the number one reason is that sometimes keeps me at home while my husband gets pumped full of painkillers? I don't want to make him feel any worse than he already does.

     Yeah, about that. See, without going too much further into territory neither of us is ready to share, one of the symptoms of Marfan's that we deal with on a daily basis is the amount of guilt my husband carries around for, you know, existing. Take a minute to just process that, let it sink in. That he feels bad for being, for the extra everything his disorder forces us to confront and accommodate daily. It's something we're working on and the words "complicated situation" are so disgustingly inadequate, it's not even funny. But there it is, the reason I don't always go with him for every single medical outing. I love him too much to cause him more pain by forcing myself into those moments for no other reason than to feel good about myself. Get it now?

     While I can't speak on every situation and can't say that it holds true for everyone in my situation, because I'm sure there are couples out there who need to be with each other for every treatment, doctor's visit and hospitalization, we are not one of them. It's not because I'm selfish, or weak, or only thinking about how many hours of sleep I've got left before the sun comes up. It's because I'm thinking of him, how it's only going to make him feel worse to see me in the hard chair next to his hospital bed, knowing that he's the reason I'm there, not warm and sleeping. I'd have register somewhere on the heartless scale to ignore the extra weight my presence sometimes brings.

      Anger aside, (because I'm still feeling a healthy mix of pissed off and frustrated) I just can't help but wish people would think before saying some of the shit they do. I know that's never going to happen, and I accept that, I really do. In fact, somewhere under the irritation is gratitude for the different opinions, because without them, there would be no discussion. Doesn't mean I'm going to keep quiet about it when I see something slightly judgmental directed at me and mine. I'm going to continue to fight like hell to open peoples' minds to another way of thinking, that maybe just because it's not the right course for you doesn't mean it's wrong. It means just that - it's not right for you. 

     I'm not sorry for my irritation, I'm not sorry if this post comes across sharper and less balanced than some others. It happens. I do my best to look at all sides of a situation, usually, but this time? No. This time I'll say that those who want to hold me up as a template of things they'd never do can hammer those nails with all the strength they can muster; I won't lessen my resolve to do what I know is right for me and my husband. It won't make me feel weak or guilty, because I'm neither.

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