Monday, April 11, 2016

Too Much

     Still here. I've had too much occupying my brain lately, ever since my husband and I attended the Heartworks St. Louis fundraiser gala last month. It was a new experience for both of us, and not just because it was the first outing we've ever had as a couple that required fancy-fancy outfits. It was a night that left us both kind of tilted on our respective axes, and the world revolves differently now, I think.

     We were both of us unprepared to be among others like my husband, and I know that sounds isolationist. Maybe it is, to a degree, because my husband has, with one or two exceptions, actively avoided all contact with others who also have Marfan Syndrome. It has nothing to do with them, and everything to do with him, and the self-image/self-worth issues that he struggles with are demons of his own making; you have to understand, "hard" doesn't even begin to encompass how it was for him to see, literally come face-to-face with things that he has trouble dealing with on a good day.

     It was something of a complete mind-fuck for him, to be in an environment where he was no longer the outsider, no longer a freak, and certainly not a less-than member of society. For a guy who's been by turns ostracized, ignored, and made to feel like less than zero - it was an experience and a half.

     Again, with very few exceptions, that was the first time he'd ever been in a room with others who have Marfan's, and even more than that, knew that he did, too. I know he was self-conscious, despite the fact that no one was unkind, or rude, or said anything other than, "Glad you're here!", or some variation thereof. A lifetime of feeling like a freak will do that to you, though, and one good night isn't going to change the landscape all that much.

     I mean, I can speak for both of us when I say that I'm grateful for the invitation, and the chance to meet others like us, because there were plenty of partners-of in attendance, too. I can't think of any "bad" that came of it, and in fact, I'm still hopeful that there's even more good to be found. I have a lot (shocking, I know) that I'm still processing, still trying to find the right words for, because there were a couple of uncomfortable things, too, things that I need to get out and about. Again, nothing bad, just, "Hmm, I don't know about all that."

     It'll come to me, eventually.