Wednesday, February 10, 2016

Hey, Hey, What Can I Do

     Sometimes when I sit down to post something, what comes out doesn't necessarily make as much sense as it does in my head. I think that's what happened with my last post, because I got off track somehow. I fully intended to talk about Marfan Awareness Month, because it's a big damn deal to my husband and I, for obvious reasons, and somehow ended up...not there.  It is Marfan Awareness Month, though, and since my husband and I started our life together, I've come to realize that "awareness" can't just be a passive thing.

     Honestly, the whole idea of being aware of various diseases and disorders used to confuse me on a good day, and annoy me on a bad one. Why would I have such a pissy attitude towards it, you ask? A big part of it is my personal experience growing up with a father who's a cancer survivor, and two aunts and an uncle who were not so fortunate. I just lost my aunt and godmother, Connie, a few months ago, and it still hurts. It will never not hurt, I think, because we lost my dad's brother, my Uncle Lee, fifteen years ago, and there are still days when I can't look at a picture of him without feeling the loss. I don't like having that murderer (cancer, not my uncle) shoved in my face every time I turn around and see another ribbon on another tee shirt. That's a terribly selfish reason, but it doesn't change what is.

     For the longest time, I took the same approach to Marfan Syndrome, because it's caused no end of heartache in my household, and I can assure you, it's nowhere near done with us. It wasn't too bad in the beginning of our relationship, because he was relatively okay then. A few pills every morning, regular visits to the doctor to keep his INR in check, and we were good to go. Out of sight, out of mind, you know? The past couple of years, though, his health has just gone down and down, and there is no part of our day in which it doesn't make its presence known. Subconsciously, I probably figured, "I'm aware, okay? I am very, very aware, so let's move on to something else," and I can't allow that to continue. Not for the sake of my husband, myself, or anyone else living with this disorder.

     The giant flaw in my internal argument, I eventually found, was that if no one knows what the hell Marfan Syndrome is, no one is going to realize it's a problem. And yes, I know there are those who don't view it as a "problem" and may take umbrage with my word choice, but from my personal perspective, it is very much a problem. I'm a strong believer in education of all kinds, for all people, because ignorance leads us to nowhere but a dead end at best, regression at worst. Therefore, if I were to actually start trying to educate people on what this disorder is, how it affects people, it would theoretically push us in the opposite direction, towards progress, yes?

     We need it, guys. Not necessarily so much on the medical end, because I feel like the most dire issues are under control, but on the everything-else end, especially. It's a chronic, degenerative, debilitating disorder, and the havoc it can wreak on your life is no joke. My husband and I are currently trying to figure a way out of the corner we've been backed into, and every possible solution circles back around to some health-related snafu. Figuring our how to live with Marfan's has been an increasingly difficult puzzle to solve, and every time we've found two pieces that fit together, five others show up with no place to put them.

     This is a conversation that needs to be had, and regularly. We have got to become more aware of our surroundings, of the problems we face, of each other, because the only way out is through, as far as I can tell.
 

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