Saturday, June 11, 2011

Hang On To Your Ego

     You know what one of my biggest pet peeves is? (I have a lot of them, so if you don't guess correctly the first time, I won't hold it against you.) People who play the you-can't-possibly-understand-what-it's-like-to-be-me card. Flat-out drives me up the wall and makes me want to smack them upside the head and say, "You egotistical moron! Stop being so elitist and smug about whatever it is that you think makes you a special snowflake. YOU'RE NOT!" Or something to that effect. I just cannot for the life of me understand why people seem to feel the need to flaunt it when faced with something like a chronic illness. It seems as though they'd rather use it as a flag to wave, declaring how different they are and how much no one else could ever begin to relate to their life, instead of just accepting it as one more aspect of their life, of no more import than eye color.

     If you've read any of the other entries in this blog, you know by now that I'm the wife of a man who was born with Marfan's Syndrome, a degenerative genetic disorder. And if you haven't read any other entries, now you know. As I was telling my mother-in-law just the other day, I don't necessarily view my life as all that much different than anyone else's. Now, I should qualify that statement by admitting that yes, I know there are a few differences between me and the next married girl. I'm planning for a different future than most, I'm twenty-six years old and already worried about how long we have until my husband becomes fully disabled. I'm not stupid; I'm well aware that there are some unique challenges with my marriage. Hell, that's the whole point of this blog, isn't it?

     There's a fine line, though, between acknowledging and accepting the challenges unique to my situation and wallowing in them. It's a line that's not always easy to walk, because I'm capable of throwing a pity party just as well as anyone else. If I really wanted to, I could rock a pity party. That, however, is not my modus operandi and never has been. In my mind, when you're faced with a problem of such magnitude as a potentially life-altering disorder, you figure out a plan of action, you keep your head up and you damn well keep it moving. Militaristic? I don't think so.

     The summer I was twelve and my little sister was ten, I learned my father had cancer. There was no crying, no wailing, no ohmygodwhatarewegoingtodo?!?! My parents were very straight with us about what my dad had been diagnosed with, what his treatment options were and what we, as a family, were going to do to get through this. As my father is so very fond of saying, we made a game plan. He endured chemotherapy and radiation treatments all summer and into the fall and continued to work 40+ hours a week at his job as yard boss at a local lumberyard while he did it. Come the fall, he went in for surgery to remove the tumor and he's been cancer-free for almost fourteen years. All the while, my family kept living as we always had - my mother went to work, my sister and I went to summer camp, we watched TV and played in the pool in the evenings. In short, we kept living our lives.

     That whole time, Daddy never brought up his illness to anyone, though he would answer questions when asked. Mama did the same and my sister and I followed their example. It was not because we were ashamed, or too scared, or felt it didn't warrant discussion. It was because the cancer was simply another part of our lives, no less, no more. It did not make my father any more unique than the next guy down the line, as there were millions who were in the same boat. It did not make my family any more unique, for the very same reason. It is that mentality that I use when I think of my husband's disorder and our life now.

     I think that people who have disorders like Marfan's Syndrome can potentially become egomaniacal about it, given the way our society is currently set up. To read the newspapers or a magazine, you'd think that every person who is diagnosed with any damn thing is the first and only; every case is unique and special. While that may be true from a medical standpoint, as a practical matter, that just doesn't hold water for me. Why, if you're faced with a diagnosis which could potentially change the course of your life, would you want to wrap yourself in the No One Knows What It's Like Cloak instead of seeking out individuals in similar situations?

     Wouldn't you want to do what I'm trying to do here, look for people in the same position so that you're not alone and you do have someone to commiserate with? Wouldn't that be a comfort to you, to know that there's someone out there in the great wide world who can relate to you on this one? (Not saying that this is the only/best way to deal, it's just the one that makes the most sense to me. To each their own, though.) I admit, most people can't fully understand the tangles I sometimes encounter with my husband's disorder and its effects on our relationship, but they can empathize and they can listen and offer what they've got available to them. Meanwhile, make it a point to search out others like you, so that you do have someone who gets it completely. I promise, there's nothing in this world so unique that you're the only one affected by it.

    


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