Thursday, January 28, 2016

Space Oddity

     Today was a bad day, kids. I mean, heart-crushing in its heaviness and implications for the kind of future my husband and I now have to look forward to, and I don't quite know how to process it all yet. I think I watched a couple of dreams we've held for a long time disappear into the black, and that bitter pill is made worse by the fact that they weren't extravagant dreams to begin with. They were actually pitifully mundane, but they were ours. I haven't sorted it all out in my head yet, (it's a war in there at the moment) but maybe once I do, it won't be as bad as I think. Hope springs eternal, right? Probably, but then so does blind stupidity and stubbornness; that's a post for another day, though.

     Last night, before today came crashing down around us, we were watching the X-Files reboot. I never really watched it when it was on the first time, but my husband did, and he was interested in seeing if this was going to live up to the hype or land with a resounding "meh". I parked myself on the couch to hang out and read my book, as I'm currently enthralled with "Ready Player One,"content to just be in one of my favorite spots, with one of my favorite people. I wasn't really paying attention to the show, since I have a tendency to block everything else out when I'm reading. (Seriously. I once didn't hear a fire alarm going off during my lunch break at work until my co-worker slammed her hand down on my desk and said, "HEY! Fire alarm, time to go!") Then, out of nowhere, I heard, "Marfan Syndrome." Um, what?

     I've written before about seeing actors in various tv shows and movies who catch my eye as possibly having Marfan, and how I would never have noticed if not for my husband, because now I know the common presentations. I've never actually heard the name said in media, though, unless it's an article about Vincent Schiavelli or Jonathan Larson; also maybe an episode of House? It startled me enough to pull me out of the book, and I turned to my husband and asked, "What did he say?" He was as surprised as I was, and had to back up the show (we were watching it on Hulu) to watch it again. Confirmed - dude really did just say "Marfan" in the context of the plot.

     Not to spoil anything, but Mulder and Scully were in some sort of hospital where children who were born with various genetic abnormalities were being kept in isolated observation rooms. The implication was that the were being subjected to medical tests, with the ultimate objective being to "fix" the flaw in the genetic code. I have no idea why the writers chose Marfan's out of the Book O' Disorders, but they did, and I discovered I'm more unsettled by it than my husband.

     My husband's disorder is genetic, and it doesn't present the same way 100% of the time in 100% of people. Some people don't even realize they have it until years down the line, and I'm sure there's a small contingent that may go their whole lives without a diagnosis. My husband's not one of them, though, and in fact looks like what I've seem termed as "classic" symptoms. (How accurate that phrasing is, I don't know.) He's unusually tall and thin, his fingers are thin and spidery, and if you know what you're looking for, it's clear what's going on. In the years since his valve replacement surgery, his dimensions have changed somewhat and he looks more balanced now, weight-wise, but the deterioration of his spine and joints have left him with an odd posture. More than once, he's told me how he's been made to feel like those kids behind the glass.

     In his teen years, he was a bully magnet due to his appearance, (though if we're being honest, his smart-ass mouth did NOT help the situation) and the bulk of his twenties was spent feeling less than spectacular. He often felt like an outsider, because kids can be cruel. It got better with time, but that sense of being looked at like a completely different creature instead of just a kid has never left him. It's why he still gets uncomfortable if he notices someone looking in his direction too often, and why he's reluctant to participate in social activities centered around others with his same disorder - he is not okay, 24 years later, with his Marfan diagnosis, and neither of us is sure whether or not he ever will be.

     It was coincidental that we were watching this particular episode of this particular show, because my husband has just mentioned to me that he sometimes felt more like a collection of symptoms, rather than a human being. I don't know if that's a common emotion, or if my husband feels it more deeply because he unfortunately falls on the more severe end of the Marfan spectrum. Of the 38 symptoms Wiki lists for this disorder, my husband is in possession of 29. Needless to say, it takes a village of specialists to keep him up and moving. And even then, there are days when it's just not enough.

     I suppose, after all that, he's more okay with everything now than he's ever been, which is good thing. He even appreciated the context in which the show used the character with Marfan (I think; it wasn't totally clear whether the child shown was supposed to be the one with the disorder, or they just happened to show that child while talking about Marfan Syndrome), and said that he thought it was right. I'm a little more on the fence, because my husband's not a science project, you know?


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