Sunday, April 10, 2011

Saturday Night's Alright

     Who wants to make a trip to the ER at 1:10 in the morning? Oooh, me! Pick me! Over here! Um, or not. Last night was great, until it wasn't. It was a fairly typical Saturday evening for us, maybe a little better than usual because my husband got off work from his second job earlier than usual and that always makes me happy. We went to get some take-out and grabbed a horror movie on the way home, ready for a comfy evening with Rob Zombie. (We're both HUGE fans of Zombie as a director, love his movies.) Evening progressed, we ate our take-out, watched our movie and made for bed a bit after midnight. Boring, yes?

     Well, no, we rather enjoy being hermits, but that's neither here nor there. My husband was almost asleep already when he suddenly sat up in bed and asked me to go flip the light on. I knew right away something was wrong, because he tries very hard not to disturb me if I'm asleep or almost asleep and would never ask me to go turn on the light if it were something he didn't think much of. So I turned the light on, asked him what's going on and he tells me he can't get his breath and it feels like there's a band tightening around his chest. Sonofabitch.

     My first thought was for his heart. I know Marfan's kids aren't especially prone to heart attacks or anything, but we can all agree that the heart isn't their finest attribute. He assured me that it wasn't and since he wasn't ticking any louder than usual (a dead giveaway that his blood pressure is not where it should be), I checked that one off my list.

      The next thought was a collapsed/collapsing lung, which he is prone to as someone with Marfan's Syndrome and which has happened twice before. However, there was no pain this time, just the feeling of the band tightening and the difficulty drawing a deep breath. Perhaps just the beginning of a collapsed lung?

     I know what the obvious answer here is to most people - put his skinny ass in the car and get him to the ER! Well, that was my first thought, too. I asked him if he need me to get dressed and take him over to BJC, the hospital where he goes for maintenance. He asked me to give him a little bit and if he still felt this bad, we could go. I agreed, because our situation is a little different than most. You see, when you're dealing with someone who's chronically ill like my husband is, you learn that you can't jump at every little bump and bruise and "bad feeling". If we did that, we'd be on a first-name basis with the ER staff.

     I'm discovering that this is yet another level of trust between the two of us that we're slowing building up. I would be completely incoherent if I lost him and my greatest fear is that I'm going to before we ever get a chance to build a life together. So why would I even hesitate when he tells me things like he can't breathe properly? Well, because he knows his body better than me and he knows what the Marfan's does to it better than me. He also knows just exactly what would happen if I lost him and would never in a million years risk leaving me alone like that. I know this and because I do, I'm able to trust him when he tells me that no, we don't need to go anywhere just yet.

     By this point, he'd started to tick a little louder, but he and I both knew that was happening because he was freaking himself out. Really, knowing what tricks your head is capable of pulling on you is half the battle in situations like his, because you've got to learn not to jump at every little thing. That's no way to live your life, running to the nearest hospital every time there's an unidentifiable twinge. Or maybe it is for some, but not for my husband and consequently, not for us. It's a daily fight not to let this damn disorder take over our lives, rule them and run them into the ground, and this is how we've decided to manage part of it.

     Sure enough, he eventually decided to try and lay back down and see if sleep would come, since the tightness was getting no worse. I lay down next to him, pulled the covers up and reached for his hand, so he would know that I was right there, ready to go should he need/want to. It was past two in the morning by this point and sleep came surprisingly easy for both of us, yet another indicator that this was simply a routine event in our lives and would not be given any more significance than that. What I need to figure out now is whether or not that's a good thing...

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