Friday, October 21, 2011

The Denial Twist

     I find my thoughts often veering off into places that they never would were it not for the fact that my husband was born with Marfan's Syndrome. Being a somewhat rare disorder, it follows that living with it would cause somewhat oddball thoughts by both partners, my husband and myself. Most of the time, those places are interesting little sojourns of the "Huh. What if?" variety and they don't bother me. In fact, I'm usually pretty grateful for them, as they allow me to contemplate scenarios that I never otherwise would have. I like trying to figure out unique problems and coming up with answers that no one else has thought of. It's often the same for my husband, as he's just an odd person on the whole and so enjoys strange mind trips to where-the-hell-ever. Once in awhile, though, my husband surprises me with something out of the blue, something that I never in a million years would have considered.

     I don't even remember how the topic came up, to be honest with you. We were sitting downstairs in the rec room, each at our computer, just rambling back and forth about how our respective days had unfolded. I think it was a Saturday, meaning that my husband was home from waiting tables at his second job and therefore in considerable discomfort. That seems to be the most likely scenario, because the conversation turned into a discussion about his disorder and we typically leave the Marfan's out of it whenever we can, unless there's a direct segue. How we got to that point in the conversation doesn't matter, because what I remember is my husband turning to me and saying, "You know, every once in awhile I purposely make myself not hug or touch you, just to see if I can do it, because what if one day I won't be able to touch you?"

     I still don't know why he chose to disclose this tidbit to me; the only thing I can think of is that is was just too heavy for him and he needed me know know so that I could share the weight. At first, I thought he meant that he was afraid his condition would deteriorate so much that he wouldn't be able to make the physical movements to hug me. That seemed overly dire to me, because while he's likely going to end up in a wheelchair with limited mobility, I can't imagine him being so bad that he can't lift his arms to hug me or hold me. I could be wrong, because the truth of the matter is that we have no idea how this is going to progress and where he'll end up physically. I really don't think it'll get that far, though, despite the level of severity of his particular brand of Marfan's.

      When I mentioned that to him, that I didn't think he'd get quite that bad and hey, I could always just sit on his lap while we wheeled around wherever, he shook his head and said that's not what he'd meant. Apparently, every so often, my husband tries to trick himself into believing he's not sick, that the possibility of an aortic aneurysm letting go isn't lurking just behind the door. One of the ways he tries to accomplish this is by acting "normal", or what he sees as normal. To him, it's not normal to fear that each day could be your last, or at least your last good one, the last one when you can walk into the house after a long day at work and hold your wife in the kitchen for a bit. It's normal to not feel a desperation to convey to your wife just how much you love her, because you may not have all the time you'd want to get the message across.

      I was momentarily rendered speechless (no easy feat, let me tell you) by what my husband said to me. I had never once considered that he felt like that. I mean, let's be honest here - Marfan's Syndrome is a degenerative genetic disorder and while nasty, it's not exactly Stage IV cancer, you know? I suppose I just never thought that it would have quite that much of an affect on his thoughts of mortality. That was rather stupid on my part, because how could it not? Knowing that your cardiovascular system is jacked and has been since the day you were born can only become a monster of an issue in the back of your mind after thirty-eight years of it living there.

     My husband told me about all this weeks ago and I still don't know what to do with it. Do I tell him to carry on as he has been, since that's what he seems to need to be able to feel okay? Do I reassure him that it's okay to touch me and hug me as much as he wants and it doesn't mean he's not "normal"? Obviously, people who are perfectly healthy can be very aware of their own mortality and choose to live each day as if they may not be given another. I personally believe that's a very exclusive club, because few of us are that self-aware, but they're out there. I just don't know. For the time being, I'm going to let it lie, mostly because I have no idea what else to do with it. I hate when that happens.


     

   

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