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?

   
     

Sunday, January 24, 2016

The Lighthouse's Tale

     The past couple of months haven't been the most fun for my husband and I, not gonna lie. He moved back to Missouri after receiving a job offer (in writing, I might add), but continued bureaucratic red tape has resulted in his start date being pushed back repeatedly. He's got yet another start date scheduled for next week, but considering we've been running our household on just my paycheck for the past two months...yeah, my stress levels are at record highs. This is a lousy situation for anyone to find themselves in, and ours is compounded by the fact that my husband's disorder means that in addition to being without his income for the past eight weeks, we've actually acquired additional bills in the form of COBRA health insurance coverage. Or we would have, had that not turned into a nightmare all its own. That, though, is a story for another day, because tonight? Tonight is for something good.

     Last week, I received an email from a woman who works with The Marfan Foundation, and she said she would like a chance to speak with me on the phone, as she's been following this blog and wanted to discuss. I knew that my blog had been linked on their website for some time, but I had no idea who, if anyone, from the organization actually read/followed it. I was curious to see what exactly she wanted to discuss, and slightly nervous that perhaps I was in trouble for one of my posts that they'd seen. (Let's be honest here, I tend not to pull punches when talking about something that's so very important to me, and I know some of my opinions aren't of the majority.) Shockingly enough, my neurotic tendencies were unwarranted, as per usual.

     Without going into detail, the conversation centered on what I've been writing about since essentially day one - the day-to-day of what it's like living with Marfan Syndrome. I phrase it that way because even though I'm not the affected one, my husband is, I live with this disorder, too; it's not just him. As he's told me on more than one occasion, I'm affected by it on essentially every level that he is, with the very important exception of the physical level. It's absolutely the third person in our marriage, the thing that makes itself known in every conversation about our present and our future, the demon that sits down at the table when no one's invited it in. The good and the bad and the mundane and the ugly and the beautiful; all of it, especially the parts that so many seem to be so reluctant to talk about.

      So I'm going to keep talking about it, because apparently, there's help on the horizon. Knowing that they're going to be focusing more on quality of life issues is like seeing the lighthouse's beam cutting through the dark after far too long at sea. That's where my husband and I have been for the past few years as his health has gone steadily downhill - lost in the black, tossed around in the storms, and pounded by wave after wave of sickness, medical bills, impossible diagnoses, and God only knows what else. We've managed to keep from drowning thanks in no small part to our network of family and friends, plus the huge well of stubbornness that my husband and I regularly draw from. There have been more times than I can count that I have no real explanation for we couldn't just say, "Screw it," and let the downward spiral carry us on its trajectory.

     We didn't, though, not one time. We have ridden out every storm thus far, and finally, finally, there's hope that we may not have to keep fighting alone. There's hope that an organization much bigger and better-connected than we could ever hope to be wants to know, wants to learn, wants to do everything they can to tackle these issues. I'm going to make it a point to start writing more regularly, to bring our issues to light where others can see them. I'm writing a piece for The Marfan Foundation's website, hopefully to be published next month, as February is Marfan Awareness month, and my husband and I were invited to attend Heartworks St. Louis here in St. Louis. Needless to say, SO MANY opportunities on the horizon to talk about living with the Marfan-shaped elephant in our marriage.

      Here's hoping I don't fall on my face.