Saturday, May 28, 2011

All Apologies

     Ugh, it happened again. Remember earlier this week when I was talking about my goal to eventually learn to channel the feelings of anger and frustration I feel when talking about certain aspects of my husband's Marfan's Syndrome? How I have these lofty aspirations of being able to turn the ugly feelings into something useful, productive even? Sooooo not there yet, as yesterday's entry can attest. While that post may have been true-ish to what I was feeling, it came out all wrong. That happens sometimes, I know, but when it does, I  like to follow it with something gentler, perhaps less frenzied-stream-of-consciousness.

     It's not an apology, per se, but I do feel that what I wrote has the potential to hurt peoples' feelings and I promise, that is the very last thing I want to do. I strive to be conscientious and thoughtful with everything I put out, but please remember that my writings are primarily for me. (Also for those in positions similar to mine who may stumble upon my little corner of the interwebs.) This is the best way I know to learn to deal with everything that comes with being married to someone with a degenerative genetic disorder and I'm lucky to have found only support and love along the way. I treasure that, more than I can really express, because I know how much harder he and I would struggle were it not for the constant that is the circle of friends and family we've been gifted with.

     That said, I have to reiterate the whole point of yesterday's post and that is that it can be really disheartening (See? disheartening = much less angry verbiage) sometimes when the first thing people think of when they think about my husband is his disorder. I wrote about how I whole-heartedly agreed with my husband's best friend Adam's approach to the situation. He only asks about my husband's health if we've had a major medical detour or if my husband brings it up first. This is not due to a lack of concern on Adam's part. Quite the contrary, he's very close to my husband and would, I believe, be very distraught should something really bad happen (i.e. an aortic tear, dissection, something of that magnitude.) I believe he does it that way because of his deep understanding of his friend and his compassion for him. What I was trying to point out in my previous post was that Adam's approach is, in my opinion, the best for my husband.

     It's just that all the well-meaning "How are you feeling?" questions get to him sometimes. He is not okay with the fact that he's broken and honestly, the unease is just getting worse as time goes on. He'll be thirty-eight this Friday, and though that's relatively young, he doesn't feel it. He feels much older, due to the way the disorder is breaking him down and he tries his damndest to forget the condition of his body most of the time. Like I've said, even though so many of those inquiries come from a place of genuine concern, they can really turn his day around, and not in a good way, when there are too many of them.

     That being said, I have to say that I always appreciate it when friends and family members ask me how he's doing. I like serving as a buffer in this situation, because I get the warm fuzziness of knowing how many people really care about him/us, but the Marfan's is not being shoved in his face, however unintentionally. It's a nice balance, I think. Also, if I'm really coming clean here, I would have to say that my husband is a little more self-sufficient in this area than I am. Truly, the one who can really make him feel better when we've had another visit to the ER is me. He's been dealing with this by himself for so long (and that was mostly by stubborn design, not because he didn't have people there who wanted to help) that he's used to it. I'm the one who, though perfectly capable of dealing with things by myself, likes the reassurance that there is a veritable army of people who have our back.

     The heart of the matter is that, I think. I deal much better with the constant inquires than my husband does, probably because we're on different sides of the same issue. I'm not the one that's broken; he is. My body does not betray me on a near-daily basis; his does. Therefore, we cannot possibly have matching viewpoints on the subject matter. What to me is a lovely reminder that someone cares is to him a needling reminder that all is not well within him. It's amazing sometimes, to realize how vastly different the places in which we find ourselves with regards to the Marfan's are. He the one who's afflicted, trying desperately to forget, to not think about it any more than he has to. Me the one who looks at all aspects of it, all the time, trying to figure out how best to approach it head-on while not letting it hijack our lives. It brings me no small amount of happiness that we can usually find a way to meet in the middle.

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