Monday, November 28, 2011

Fortunate Fool

     Every year around Christmastime, the local newspaper prints weekly installments of something called The 100 Neediest Cases. It's a list compiled by the United Way that gives a brief description of 100 local families that are in desperate need of food, clothing, financial assistance and other things that most people, myself included, tend to take for granted. I've known about this project since I was in high school, when my little sister won an art competition and her pen-and-ink drawing was selected to illustrate one of the stories. Every year since, I've made it a point to read about each of the families profiled and whenever I've had the money to spare, I've donated to whichever case makes my throat swell up the most. It's never much, but it's what I can do.

     This isn't the first year my now-husband and I have spent Christmas together, but it is the first time that reading these stories has made me pause and really think about what his Marfan's Syndrome means to our life together. In a lot of ways, it's a royal bitch, always making itself known at the worst possible times and very rarely allowing us to forget completely that it's there. We can't ignore it any more than the ticking of his aortic valve can be ignored. Maybe, though, maybe it's not as bad as all that. Maybe I let it become too much in my head and it blocks everything else out, or at least becomes so much larger that everything else seems insignificant by comparison.

      It shouldn't be that way, I'm thinking. It shouldn't be a struggle to try and focus on all the good I've got going for me, but it has been lately. The past four months or so have been the hardest we've yet experienced as a team and though I wish I could say it's beginning to ease up, it's not. In fact, I just got some seriously annoying news today that was apparently the straw the camel's back has been waiting for. I've kind of had it with the bad stuff, though, the feeling like the good is so far away, a speck of light that we're always slogging towards with little progress to show for our efforts. I'm really sick of that feeling, actually, so why don't I tell you about some of the things I'm really glad I've got, the things I couldn't be more grateful for if I tried? Yeah? Here goes.

     1. Just now, I am insanely grateful for my husband's friend Adam. He's actually much more like family to us than a friend and recently, when my head was just too damn full and I needed badly to release some of it, he was there. That's what love is, people - when your best friend's wife calls you and rambles nonsense for over an hour and instead of just giving canned responses or cutting the conversation off when you get bored with it, you actually listen and help her out. It's good stuff.

     2. By the same token, I don't know where I'd be without my friend Frederic. We've grown up together, experienced just about everything that can be thrown at a person in two short decades and we're still together. Frederic will always have my back, even if I'm wrong in whatever it is I'm doing. He loves me and I loves him and I'll always be grateful that we were assigned to the same second-grade teacher so that we could become friends.

     3. My in-laws. They accepted me unquestioningly, even though their son broke the news he was going to marry me before they'd ever had a chance to meet me. (Remember, my husband's from Charlotte, NC and we're in St. Louis, MO, where I've lived my whole life.) That's taking a whole lot on faith, but they did it. I've got a hell of a lot of love and respect for them.

     4. I cannot overstate the miracle that is having health insurance when you're dealing with a disabled person like my husband. I've probably mentioned this before, but even with the kick-ass insurance that we get through our employer, my husband and I have paid out at least two thousand dollars this year in co-pays for medicine, surgeries and doctor's visits. Granted, that total is for both of us combined, but when you consider that today was only my second doctor's visit this year, I think you can figure out on whom we spent the lion's share of that money.

     5. My family will never let my husband and I fall. Ever, not even a question. I don't to imply that his family would, because they wouldn't either, but my family is in close physical proximity, so they're the ones we have to call on when something goes down. Remember that one trip to the ER that had me really flipped out? I put in a call to my mother and she was all, "Oh, alright, I'm on the way," and by the time I got there, she was sitting in my husband's ER cubicle, trying to force him to eat his hospital food. When my husband recently had to quit his second job and we didn't know if we were going to be able to stay in our house, we knew that we'd always have a home with my parents. You know, the little things like that.

     6. You probably won't get this unless you're a gamer, but I'm grateful for my guildmates. There are a small group of them who are a little more, um, unruly than is probably accepted in polite society and these guys are the ones who can make my day better when everything else has failed. Granted, they don't know they have that effect on me. It's the fact that they carry on as normal, being rude, gross and generally obnoxious, that makes it so good. When I'm gaming with them or just listening to their always-entertaining banter in TeamSpeak, it's like a Marfan-free zone. I and my husband can both truly forget, just for a little while,  that he's not healthy. That respite is worth more than I can articulate.

     I could go on like this for pages and pages and the fact that I can makes me feel better in and of itself. It's an awful cliche, I know, but God, it helps to take a minute and remember everything you've got to be grateful for every so often. I don't do it enough, because the bad things demand so much more attention and brainpower. It's not that the good things are hard to remember; as you can see, when I sit down and dedicate myself to the purpose, it's really easy to think of all the good. And that tiny list? Not all the good in my life, not by a long shot.

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