Friday, June 10, 2011

Out of the Blue

     I wonder what it's like to know someone for years and not know anything about something that's a huge part of their life. And what must it feel like when you do finally find out about it? Is it a huge revelation, something that you never even knew existed? Or is it more like a light bulb going off when all the pieces of something that lived blurrily in the corners of your mind finally form a cohesive picture? It's so hard for me to imagine what it's like to be in that position because I was raised in a family in which anything and everything was open to discussion. Especially with medical issues, nothing was hidden from anyone. Quite the contrary, as soon as there was any sort of diagnosis, telephones across the country started ringing like crazy from all my relatives racing to make sure that everyone else had as much information as possible.

     The same kind of mentality was also pervasive among my core group of close friends. If something significant (or insignificant, for that matter) happened to one of us, the rest of us knew about it in short order. We discussed it, dissected it, figured out the whys and the hows and then decided what, if anything, was to be done about it. As I got older, I began to realize that this was not the norm, that many times, people just kept to themselves about what they considered sensitive subject matters, only opening up to a few people close to them. My husband most definitely falls into the latter group, those who keep things to themselves and only talk about it when absolutely necessary.

     I've known that he has Marfan's Syndrome since we first became friends, though I understand from him that I'm unusual in that respect. Apparently, his disorder is not something he ever really disclosed to his friends, though I'm sure they knew something was up with his health when he was scheduled to undergo open-heart surgery at the ripe old age of twenty-eight. And that was after he'd been cut open and had his spine reconstructed with titanium rods and his own pulverized rib.(True story, in order to help reinforce my husband's deteriorating spine, the doctors removed one of his ribs, ground it up into powder and sprinkled it on his spine. I'm oversimplifying, of course, but you get the idea.)

     Despite being witness to these major events, there are still people in my husband's life who don't know the root cause of the medical adventures. I think that's mostly due to my husband's closed-mouth policy when it comes to his disorder and, to a much lesser extent, due to friends not wanting to ask questions for fear they're treading on boggy ground. Lucky for him, I have no such fear, nor have I ever. I dove right in with the questions as soon as I figured out that he ticked. (His heart, I mean.) So for me, there's never really been a not-knowing and consequently, no huge revelation somewhere down the line of a years-long friendship. I know that's not the case for everyone, though.

     I don't know how I'd feel about it if I found out after all that time had passed that my friend had something as serious as Marfan's Syndrome. Would I feel betrayed at the lack of disclosure? Perhaps begin to doubt just how strong our bond was, that he didn't deem it necessary to share such an important part of himself? Anger at being kept in the dark, no matter that it wasn't by design, but rather the result of a lack of desire to talk about something that he wasn't ready to deal with? Sympathy is probably the obvious reaction, though if it were me, it would be more tangled than just that. I think I'd also feel some sadness (possibly guilt, unwarranted though it may be) when I thought of all the time that I could've done my damndest to help him when he needed it, if only I had known. Which might then lead to resentment and other sticky, sticky emotions.

     I have to discuss this in bits and pieces, because there's so much to this rather delicate topic. It's one that I believe is a key piece to understanding the prism through which my husband views himself and his disorder. Everyone makes their choices in life based on what they feel is the right path for them. In general, I don't believe anyone has the right to criticize the choices made by another individual, especially when it comes to situations like the one my husband was born into. It's the old walk-a-mile-in-my-shoes school of thinking. Some might disagree, especially considering that my husband's habit of keeping his disorder as private a matter as possible can and does affect those close to him. I have to respect his decisions in this arena, though, as ultimately, he's the one who has to deal with any repercussions due to said non-disclosure, not me.

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