Friday, January 13, 2012


     If I were a fatalistic person, I would be kicking myself right now for posting that last. As so often happens, no sooner did I finish crowing about how swimmingly things seemed to be going than we experienced a minor setback. I think I failed to mention this, but my husband hasn't been able to work a full week since before Christmas. The manifestations of his Marfan's Syndrome have been kicking his ass lately and with frustrating regularity. It started with that bad fall he took the Monday before Christmas and just hasn't let up since. He was actually hospitalized a couple of days before New Year's because he had an incident that the doctors at first thought was a mini-stroke (yeah, I know, I'll get into that later), which was the worst of it. The most recent two happenings have been relatively tame by comparison.

     I was really, really hoping that this would be the week he could finally pull a full five days, since it feels like forever since he's had one of those. As a practical matter, I know he's not going to get fired or anything like that - that's not what had me so anxious to see my husband at work Monday through Friday. It was more just the idea that with so many sick days in such close succession, I knew people were going to notice, people who may not know that he's disabled. It's always a bit of a head trip and a hard time for him when he's "found out" by a new person, so we try to keep it as quiet as possible around the workplace. Four sick days in as many weeks doesn't really do much to help one remain inconspicuous, as it turns out.

     My wake-up this morning was my husband bursting through the bedroom door, panting heavily and saying, "Wife, I can't breathe, I can't breathe!" There is no leftover drowsiness when I'm woken in such a manner; I'm up and alert immediately and my brain's already running down the list of things that could be wrong this time. For a split-second, I thought, "His heart," but then he managed to get out that it was his back, again. He'd flipped his head over to dry his shoulder-length hair and that was enough to cause a cramp so severe it prevented him from being able to take a normal breath. All he could do was that panting thing, short, rapid intakes that made him seem panicked and twitchy.

     He wasn't really panicked, mind you; it just seemed that way. When I asked him what happened, he told me what he'd been doing and that he suddenly felt as though he'd been shot in the back, the pain was that sudden and brutal. My first thought (and I'm not proud of this) was, "No. I am not making my fourth trip to the emergency room in as many weeks. Not happening." In that moment, I almost lost that control I so pride myself on keeping tightly in check. I didn't want to listen as my husband tried to describe what was going on in his back, how the pain was beginning to spread. I left him sitting on the edge of the bed as I stomped off to the kitchen to get his daily meds, plus a Flexoril.

     I had it so firmly in my head that he had to go to work today, we were so damned close to a full week, that I just didn't listen for the first few minutes. I gave him his pill and some apple juice to wash them down and then I sat on the edge of the bed and tried to reassure him that we just needed the cramp to let go, that all would be well if we could just accomplish that goal. I probably said out loud, "I can't go to the ER again, no. I can't," because I distinctly remember my husband starting to chant, "Stay with me, stay with me, don't leave me." It pulled me out of whatever badness I was about to lose myself in, so thank God he did.

     I was quick to reassure him that no, I would never leave him. I assumed, wrongly, that he was asking me not to end our marriage and leave him for good. And before you jump all over me and my apparently huge ego, let me clarify a bit. My husband has a bit of a guilt complex about his disorder; namely, that he feels as though he's dragging me and my life down with his medical needs. He couldn't be more wrong in his belief if he tried and I believe he knows that, somewhere in his brain. However, he also believes that he's a burden on me and that's a pretty deep-seated belief, one that's hard for him to get around sometimes. There have been a few occasions when we've had to deal with some situation brought about by his disorder that were bad enough to make him turn to me and tell me to leave, that I'd be better off. Yeah, about that - Never.Gonna.Happen.

     Eventually, I got him settled on the couch with two blankets, a couple of cats and his cell phone, should he need to call me at work for help and then I left. I was thinking all day about what he'd said to me, how he'd asked me to stay and my reassurances that I would never leave him, that he was my match and my love. When I got home, I first asked him how he was doing and when I received reassurances that he was slowly making progress, I told him what I'd been thinking about all day. Whenever I want to write about something that's potential a touchy subject for him, I always discuss it with him before I sit down at my computer. In this case, I'm so happy I did, because it allowed him a chance to clarify what he'd been trying to convey.

     You know how I've mentioned before that I need to work on not being so hard and getting so easily frustrated with him at times when something like this morning happens? Well, my husband knows me well enough to know when I'm getting to that frustrated point and was trying to pull me back. By saying, "Stay with me," he was attempting to keep me in the moment with him, asking me to continue to be the partner that he needed at that moment, not the girl who was pissed off at the circumstances beyond her control. I'm really, really glad he had the presence of mind to do that, to recognize what was happening and pull me back to him.

     It's a huge, huge step for us, that this is a definite example of us learning to take care of each other in the face of his disorder. He's getting the hang of asking me for what he needs when he most needs it and I'm at least learning to recognize those requests for what they are. I was able to get back to him this morning, to push the frustration away and focus on my husband and what I needed to do to make sure he was okay. I'm well aware that I sound like some sort of self-help/marriage counselor here, but I can't be the only one who's got these issues. In fact, I know damn well I'm not, because I get the occasional e-mail or comment that proves it. It's for that reason that I'm going to keep writing about it every time something this good out of the bad happens. That, and this also helps me figure out my own head like nothing else.

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