Friday, January 28, 2011

Let's Start at the Very Beginning...

     My husband and I were friends before we were anything else. That's not unusual; many romantic relationships begin as a platonic pairing and over time, evolve into something more. We began by hanging out a couple of times a week, commiserating over the dissolution of our respective long-term relationships. There was a third person then too, a mutual friend who forced us out of our houses and into human companionship when, if left to our own devices, we would've holed up and passed the time feeling sorry for ourselves.
     Instead, we started spending more and more time together, attending concerts, trivia nights and various other activities throughout the city. It was during this getting-to-know-you period that I first began to suspect something was not quite right with my (for now) friend's health. This was confirmed shortly thereafter by our mutual friend, Rose. I couldn't tell you what started the conversation, or even exactly what was said. But that was the first time I'd ever heard of Marfan's Syndrome.
     I'm a curious person by nature and usually go straight for Google or Wikipedia when I encounter something I'm not familiar with and research the hell out of it. This was no different. I read anything and everything I could find about the disorder, but I never told my now-husband of my newfound knowledge. He'd only ever mentioned in passing that he was a "medical mess" and he'd never gone into the gory details with me. We discussed this a few months ago, why he didn't want to tell me what was actually going on. As it turns out, he already had a crush on me at that point and didn't want to be seen as "defective". Breaks your heart, doesn't it?
     This is the very first issue that I ran into when I began my relationship with my husband. By the time we actually began dating, I knew the score. I knew that our odds of growing old together weren't as great as other couples, knew that I would likely be the one to ultimately take care of us financially, knew that I would almost certainly be the one to take care of us physically, knew a thousand other things that he wished I didn't. And when I told him what I knew, he just kind of nodded sadly and looked at me as if he were waiting for me to say, "So, yeah, you're kind of too much trouble and I don't have to be burdened with you, so bye." Way to break my heart again!

Friday, January 21, 2011

Is There Anybody Out There?

     My husband is my perfect match, which is something I don't believe many people can say. They might say that they're well-matched, or that they make a good team, but it's not often one comes across a couple that seems so right for each other that others look at you with envy and say how they wish they could have what you've found together. I'm one of the lucky ones, I know that. I say that knowing full well that our time together hasn't been and won't ever be like that of the vast majority of couples. My husband was born with a degenerative genetic disorder called Marfan's Syndrome and there is no part of our lives that it doesn't affect.

     When we met, it was as co-workers. Over time, we developed a friendship, which then evolved into a deep and true love. "True love" is a phrase that's often overused, often scoffed at and seems better suited to fairy tales than to life in the 21st century. Whatever. It's the most accurate phrase that I can come up with to describe what it is that I've found. Every day I wake up with him, I'm reminded of just how lucky I am that we found each other at all, when the odds were against that.

     I think, to some degree, that anyone can say it's a miracle they found each other. They may be from different corners of the world, they may be trapped in other relationships, they may be any number of things that would prevent them from finding the love of a lifetime. I, however, have even more reason to be grateful, given my husband's condition.

     The simplest way to describe Marfan's is as a connective tissue disorder, though that makes it sound much simpler and less destructive than it actually is. As I mentioned before, there is no part of our lives, past, present and future, that is not affected. It's the day-to-day fear that he will try to lift a box that's just a little too heavy, rupture something and lay bleeding internally while waiting for help to arrive. And what if help comes too late? Or the fear that someday, we won't be able to make ends meet (because there's no way in hell that he's going to make it to full retirement age).

      And to those who say, "Oh, he can just go on disability," I say, that's a lovely idea in theory, but IF he qualifies for SSDI (Social Security Disability Insurance), there is a full five month waiting period between the time he's approved and the time he begins to receive his benefits, which are only 80% of his previous earnings, by the way. We're on a tight budget to make it work with the full-time jobs we both currently have, so tell me how losing a full 20% of that income is anything close to okay.

     The questions and thoughts and worries that go around and around in my head every day are always there, to varying degrees, and I don't really have anyone to talk to about them. When I went to the all-powerful Google to ask for assistance with finding other "Marfan spouses" (my exact search phrase)...I got nothing. You know how the little search box will bring up suggestions as you're typing in what you're looking for? Yeah, not this time. If my computer could've cricket-chirped back at me, it would've.

     So I've decided to start writing, both for myself and in the hopes that I'll find a kindred spirit or two along the way. I know there are more of us out there, men and women devoted to partners who suffer from this particular illness. I don't know exactly how to find you, so I'm hoping you'll find me. I'm going to keep writing, verbalizing all the hundreds of issues unique (and some perhaps not so unique) to the partners of Marfan's Syndrome sufferers. I'm going to keep searching for people like me and while I embark on that journey, I'm going to try to create a space, however small it may be, for those people to come and talk and share their fears and their hopes. Wish me luck.