Saturday, February 5, 2011

A Different Direction

     This blog is really my first attempt at a cohesive anything writing-related. I started this with the idea that I would tell the story, chronologically, of how I became involved with my now-husband and, consequently, Marfan's Syndrome. I had it all mapped out in my head that I would simply tell our story as it happened and then move onto a Topic-of-the-Month or some such thing. I've since realized that such a format simply does not work for me and likely will not accomplish what I'm hoping to with my writings.

     What I want is an outlet for myself and others in my position, somewhere to go and find release for everything that's going through their heads. Somewhere to find people in the same place, where they can find a verbalization that makes them say, "Yes! THAT! That's exactly what I've been feeling, but didn't know which words to use to say it out loud!" And so, with that in mind, I've decided that I'm going to take things as they come and address them as they happen, out of order or not.

     My husband received a package in the mail yesterday - his new cardiac monitor, which will be his constant companion for the next month or so. He has to sleep with it on, work with it on, shower with the little sticky things on. Needless to say, he is less than pleased. It's not the inconvenience of the device that bugs him, though - it's the tangible proof that something is very much not right with his body.

     It doesn't help that the damn thing beeps every time it detects something it doesn't like, which of course draws the attention of anyone in his immediate vicinity. Thus far, everyone has chalked the noise up (wrongly) to his cell phone. He's grateful for that, because if there's anything that he dislikes more that having to disclose/ discuss his issues with people, I'm not sure what it is.

     How can I help him with this? What can I possibly say to make him be more at peace with the fact that he is physically broken (and do NOT correct me on the un-pc phrasing, because it is accurate) and now has to contend with yet another reminder of that inescapable truth? What to do when people ask him what that noise is and he has to explain?

      I always know when a new person has noticed that something is not quite right with his physical appearance and remarked on it. It's usually not done out of malice, just ignorance and sometimes completely tactlessly. Those insensitive people are the ones that make me want to kick their teeth in for sending him back to me so dejected-looking. I can't stand the expression on his face and the air about him that signals very clearly to me, "Yeah, it happened again." The sense of helplessness is overwhelming sometimes for both of us, and all I can do is sit on the couch with him while he makes himself as small as he can and tucks into me.

     While we're both aware that the cardiac monitor is temporary and the tell-tale beeping will soon be gone, the effects of the device will remain long after we send it back. It's not the first and won't be the last medical whatever that's used to monitor his degeneration and serve as a reminder to both of us that while everyone's time is finite, his clock will mostly likely stop ticking before it should. Every time something as seemingly small as this happens, we both have to fight hard not to let it pull us into the dark "What if?" places. I'm trying really hard to believe that that fight will not become harder as we go along, but sometimes I just can't make myself believe it.

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