Saturday, March 15, 2014

Head Up High

     Honestly, it was bound to happen sooner or later and the fact that it's taken as long as it has just means...something. I don't know what it means, but finally reading the first semi-negative things about my blog and what I write was a less than pleasant experience, absolutely. I'm not thin-skinned by any stretch of the imagination, (I never would have made it through high school as relatively unscathed as I did if that were the case) but it sucks, hard, when the exact sentiments that I'm fighting against are used in commentary about my and my husband's choices regarding how we handle his disorder. It's frustrating, seeing in black and white the mentalities that push at me, make me question my decisions. It makes me wonder if my place here is doing any good for anyone after all, or if it's just a space for my voice to echo back at me.

     Here's the thing - I don't really know the best way to respond to criticisms like that. Does it even warrant a response? I mean, the first rule of the internet, as far as I'm concerned, is don't feed the trolls. Ever, under any circumstances. The more I think about it, though, the more I believe that rule probably doesn't apply, because the comments made weren't bratty 14-year-olds whose greatest thrill comes from antagonizing strangers from the safety of their keyboard. On the contrary, I get the sense that every opinion given was given with the best of intentions; there were none that were mean-spirited. Still, a couple of them rubbed me exactly the wrong way.

     My husband was playing around on the internet earlier, as he often does, and discovered that one of my blog posts had been re-posted to a Facebook page for people with Marfan Syndrome. That's fantastic, because that means more people have a chance of finding my tiny corner and reading something which might help them. It's happened before, and it makes my day every time. However, this was the first time something I've written has been taken as a negative thing. I'm not going to post the link to the page, because that's just inviting trouble, and I never want to be the one to draw a line in the sand over this, however inadvertently. Suffice it to say that a few of the commentators thought I was making a mistake in choosing not to accompany my husband on every single ER visit, going so far as to imply that perhaps I don't understand the meaning of, "in sickness and in health."

      Right. Even after taking a few deep breaths and posting what I thought was a well-mannered, intelligent response, the urge to erase it and instead post the more succinct, "Um, fuck you and the horse you rode in on," was waaaaaay too strong. So I tried to write this instead, got as far as the first paragraph and realized I had to get my head straight before I let ugly impulses take over. Solution? A quick trip down this two-lane road that runs past my house down to Charlotte, with "Sabotage" on repeat as loud as I could make the stereo go. (If you're unfamiliar with the song, do yourself a favor and go pick up a copy of Ill Communication. You're welcome.) It helped, a lot. 

     I know there are always going to be people whose opinion not only differs from my own, but who actually hold the one that I'm diametrically opposed to; it's the way of the world. I knew that going into this, so the only surprise here should be that it took this long for me to encounter it. The initial surge of intense irritation can be excused, I think, because I'm human, after all. If that point of view, the one that says people like me should suck it up and just be the support system no matter the personal cost, bothered me enough to start this blog, it only makes sense that when it's used to directly address my specific situation, and in so condescending a manner that the idea of, "I hope she doesn't regret her choices," is the main idea, it's gonna piss me off, however temporarily.

     The thing of it, though, is that that's okay. It is totally, one thousand percent alright to be pissed about that, just as my whole philosophy that I'm a person, too, with equal needs and wants, not just a part-time wife, part-time caretaker is okay. That's really the whole goddamn point of the exercise! I felt, when I first started looking for support groups, and still feel, as I continue to search for others like me, that the pervasive idea of, "Look how great life can be even though my husband/wife/partner is sick! It's just made us stronger, look at our smiling pictures!", while not wrong, was rather restrictive. It doesn't allow for the ugly, the unsure, the scared, the selfish. 

     Those emotions and thoughts, the ones I frequently talk about, those deserve just as much room at the table as the supportive warm fuzzies. It's a big enough table, I swear, I'm just sick of seeing the more unpleasant parts of being partnered to someone with a chronic disorder like my husband's get elbowed into the dark corner. That's what I find, almost every time I go looking for like-minded individuals. We talk to each other in private, maybe commiserate over email, and while that's awesome, because I would never want anyone to feel pressured to talk about their feelings in a public setting if it they're not ready to, I think there are more people like me than one might suspect. I think it's just that they might get tired of being pushed to the corner and made to feel, however unintentionally, like a freak. Or worse, like they're somehow less for having those types of thoughts in the first place.

     When I think of support-type groups for people like my husband and people like me, I see khakis and business-casual dresses and polite conversations in rec centers and hotel meeting rooms. I don't see the kids like me, with questions and doubts and fears for both themselves and their loved ones. I want to believe that there's acceptance for all of us, because there should be. We all deal with this in the manner that best suits our families, our lives, even our individual happenings. So why isn't it acceptable that some of us need to talk about the rougher parts, and choose to handle things in a way that might not be so agreeable to others?

     Look, while I've never in my life been in a physical fight and don't anticipate being in one, oh, ever, I will say that running my mouth has gotten me into plenty of trouble and made the years between twelve and seventeen a lot less smooth than they could have been. In any heavy issue I've ever seen and/or been a part of, someone has to be the dirty little punk with the scuffed boots who says what they're thinking and never mind those who think it's impolite. While it hasn't always been me,  it has been me on more than one occasion and I'm happy to do it again now. I want to open the dialogue, I want there to be a place at the table for us, I want there to not even be an "us", because aren't we all in this together? 

     And that's the crux of it, right there. Why does it have to be, "I hope she realizes what she's doing by not being there for every.little.thing"? Why go there in the first place? Can't it just be, "Damn, that's a tough call to make, I'm glad she and her husband have found something that works for them?" Some part of me will always feel like that dirty little punk running off at the mouth, but my hope is that someday I can run my mouth from the table, side by side with all the other opinions. Maybe I'll even wear a nice dress to do it.


Shannon Keneson said...

I remember that post! I even responded to it becomes was so irritated with the holier than though attitude. You do what you have to do to keep yourself a float. If you don't take care of yourself first you won't be able to be there to care for your husband. I think that's what I said actually. Head up high sister! You're not in it alone.

Kris K said...

You did respond to it! I even told my husband, "That girl that commented follows my blog, and she must read it, because she understands what I'm trying to say." I try really hard to let it roll, and just keep telling myself that everyone is entitled to their opinion. And then I thought, "Yeah, they are, but that doesn't mean I can't get pissed off by it." You totally did point out that taking care of myself is key, because if we're both sick? Bad news all day. Thank you for reading, thank you for understanding.