Monday, August 22, 2011

Time in a Bottle

     The other night, when my husband was lying on the living room floor after falling down the basement steps, he said to me, "I wish I could bottle up that time we had together before I started getting this bad." I didn't say anything in response, because I was afraid that if I tried, the truth would come out of my mouth and that's exactly what he didn't need just then. What my husband needed in that moment was reassurance from me that we would get through this latest tough spot, that the painkillers would kick in soon, that he would be able to sleep through the night and make it to work the next day. What all that surface nonsense means is that what he really needed to be reassured of was that our best days weren't behind us. I have to admit, I couldn't promise him that at the time, any more than I can promise it now.

     So I did something that I didn't necessarily like, but had to do - I lied. That sounds awful, to lie to your ailing husband as he suffers through another painful evening, but before you start casting those stones at me, let me tell you that i look at it as a necessary evil. I can't be the only person in the world who's done it, said something they didn't truly mean or believe, but gave voice to it anyway because they knew it's what the other person needed to hear at the time. Besides that, my husband knew it wasn't the truth even as I was saying the words. It was what he needed to hear and believe, though, so that's what he chose to do. Some might look at that as burying our heads in the sand, but I would argue that it's just a way of taking a tiny mental vacation in order to retain some sanity.

     The thing about it is, I really believe sometimes that the best of our days are behind us and I know he does, too. We haven't even been married a year yet, but his disorder has seemingly kicked itself up a few notches in that short time span. I feel like we have ever-increasing emergency room visits, some of them secret, some of them not. It's beginning to seem like the nights he's not in pain when he goes to sleep are far fewer than the ones when he is in pain, though my perception of that ratio could be skewed because the nights he's in pain are so much more difficult to get through. He's much more tired than he used to be, just on a day-to-day basis, and the second job is rapidly becoming something that's just not feasible.

     All this is what we contend with every damn day and neither he nor I can deny the knowledge that it's only going to get worse. Marfan's Syndrome is a degenerative disorder, people; it's not something you come back from. I try to be grateful that we're in St. Louis and luckily, have access to the very best the country has to offer in medical care for a Marfan's patient. That gratitude only holds out so long, though, before I start thinking about how there are so many aspects of this damn disorder that no one can do a thing about. Sure, my husband has had his defective aortic valve replaced with one made from titanium, thus dramatically reducing the risk of death from aortic dissection, but what about the rest of his body?

     Marfan's Syndrome is a connective tissue disorder and it's sure as hell not picky about what it affects. My husband's case is closer to the more severe end of the spectrum, which makes his treatment all the more difficult, I'm sure. How do you a treat a full-body breakdown? I mean, that's essentially what's happening here. His spine already has three titanium rods and all the screws to hold them in place, he's got the aforementioned valve and the piece of garden hose that came along with his aortic root replacement, and he's also got a plastic lens in his eyeball because his own was useless. The surgeons can keep replacing pieces until the cows come home, but they can't replace the whole.

     What if my husband was never intended to make it this long? I know, it's a really morbid and rather disturbing thought, but it's a theory that he and I have been kicking around lately. Prior to aortic root replacement surgery becoming the new hotness for Marfan's patients, the average age of survival was thirty-two. My husband just turned thirty-eight, so you have to wonder what that's all about. Some will point out that with advances in medicine, the average lifespan for a Marfan's kid is now the much more reasonable age of seventy-one. That's also true and it's something I'm grateful for every blessed day. Keep in mind though, that there are also many more cases of Marfan's Syndrome being diagnosed than ever there were before and consequently, many more mild cases popping up to push that survival age ever-higher.

     Unfortunately, my husband does not fall into the "mild case" category. He gets to experience just about every aspect of Marfan's available and it's so much less than fun for both of us. Actually, I'd venture to say that it's just as hard on me as it is him, even though he's the one who has to deal with the physical repercussions. I'm sure that doesn't make any sense, but try for a moment to imagine how you felt the last time someone said something insulting to your beloved. Odds are, you took it harder than they did, right? You were indignant on their behalf and, if you're anything like me, harbored fantasies of putting the detractor squarely in their place, hopefully in front of a large audience.

     I think I worry about my husband's quality of life far more than he does. I don't know if it's because I'm healthy and he's not, so the contrast is that much sharper or if it's because he was born with this, so he's never known anything else. Or maybe it's just that I love him so much that seeing him in any amount of pain at all is terrible to watch. I just don't know. I do know that while I'm afraid once in awhile that the good times are over, I believe that's just fear and negativity getting the better of me. It happens; I can't be upbeat about this all the time, though God knows I try my best.

     Instead of wishing to bottle up past times so that we can put them away and dwell on them, my husband and I need to learn to adapt. It's going to be a hell of a thing for both of us, as I do not handle change well and my husband is a champion in avoidance when he wants to be, but it's the only solution that I can see. And even that's not the right turn of phrase, because it's really more of a change in perspective than a solution to a problem. There is no solution to my husband's medical issues, but there are better ways to handle it, better ways to manage our lives so that it's only one small part of the whole, not the hulking monster around which everything else must be adjusted.

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