Saturday, July 9, 2011


         You know what the worst part of my husband's disorder is? The fact that there really isn't anything solid I can do to make it better. I mean, yeah, I can make sure he takes his daily meds (though of the two of us, he's a thousand times better at remembering things like that than I am), goes to his doctor's appointments and things of that nature. As I've said many times before, though, Marfan's Syndrome is such a wait-and-see disorder that it's really hard to be proactive. The keyword for dealing with it is, unfortunately, reaction, which often does not sit well with me. I realized just the other day, though, that there is something my husband can do to not poke the sleeping bear that is his disorder and that is to quit pushing his damn physical limits.

     My husband works in IT, but occasionally has to do more physically demanding stuff like running cables. Sometimes that's fine and it doesn't affect his body any more than sitting at his desk for an extended period of time does. Sometimes, though, it's just not a good idea and the real hell of it is, he knows when it's a bad idea and does it anyway. Those are the times when I want to either A) pull my hair out in frustration or B) knock him upside the head and tell him to quit being a stubborn jackass. Perhaps a combination of the two.

     The day before his last sick day was the day it really hit home for me. He and his co-worker were running cabling and though this particular job wouldn't have been physically demanding for anyone else, it quickly became a nightmare for my husband. It was just a bad day for his already-unhealthy body and he pushed it too far by insisting that he could do it.

     Now, we work together, my husband and I, and he had to pass by my desk several times over the course of the day and every time he walked by, he'd give me an (unsolicited) update on his rapidly-deteriorating state of being. Every time, I'd ask him to please slow down, let his co-worker take some of the heavier work from him. I didn't think this wasn't an unreasonable request, especially considering the fact that his co-worker knows about my husband's health issues and asked several times for my husband to slow down and allow him to take over more of the physical work. Shockingly enough, my husband refused, until it got so bad that his co-worker flat said to him, "Stop. I'm doing this now."

     How am I supposed to accept that my husband is in pain and headed for another sick day when I know damn good and well it doesn't necessarily have to be that way? True, nothing will ever cure him of the Marfan's and his body will never be able to do everything he wants it to do. But damned if there aren't ways to NOT POKE THE SLEEPING BEAR! I cannot for the life of me understand why he won't just take it easy when he knows that his back is "thisclose" to going out. (That's exactly what he told me that day, while holding his thumb and forefinger about a millimeter apart.) Okay, so if you know it's "thisclose" to being a bad situation, why in the hell wouldn't you stop what you're doing? Especially given that you're working with someone who's considerate enough to say, "Hey man, let me help you."

     I can't make him understand how hard it is for me to sit there and watch him push himself to do something he knows isn't going to end well, knowing I can't do a damn thing to stop it. When we're at work, we try our best to treat one another as just co-workers and ignore the fact that we're married. It's a very casual office anyway and we've never had a problem yet with this arrangement. When situations like this arise, though, it's all I can do to keep from running to his boss's office and telling him that my husband has to stop what he's doing because it's going to end badly. I have to stop myself, though, because not only is that completely unprofessional, but it would take my husband a long damn time to forgive me for something like that.

     It's no secret that he hates that he's sick and wants as little attention as possible drawn to the matter. I would argue that it's not just about him anymore, not when I also have to deal with the repercussions of yet another unpaid sick day. Beyond the practical, I just don't think he really gets how painful it is for me to see him hurt and know that I can do nothing, to know that it's going to get worse still and still nothing I can do. It makes me feel completely helpless, neutered even.

      Whenever I do something that's less than clever, my husband likes to joke that he can't save me from me. I would have to say the same of him in this scenario. I try my best to take care of him, encourage him to take care of himself and do what can be done to manage the Marfan's. If he refuses to concede his body's limits, though, what am I supposed to do? I cannot (however much I may want to at times) physically keep him from pushing it and God knows I make my opinion known whenever it comes up. He's not exactly skilled at taking suggestions, though, so the question of how do I help someone who won't be helped remains.


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