Monday, June 27, 2011

We Are Family

     I love my family, a lot. In so many ways, I really feel like I was blessed with the ideal parents and sister. It is solely because of the unwavering love, support and understanding that I received with regards to everything I did and did not do that I was able to grow into the person I am now. I also believe that my family is one more piece of evidence to my fatalistic argument that my husband is the one person that I was fated to be with. What's my family got to do with my marriage, you ask? Well, when dealing with something like Marfan's Syndrome, you need a pretty damn good support system in place to help with everything. My family is a cornerstone of my support system and it's hard to imagine a better one. So you can imagine that when a piece of that system fails me, it's difficult to stomach.

     Last weekend, my sister and I were at a family gathering to celebrate the recent graduation from college of two of my cousins. We were sitting around, talking with my mother and an aunt whom we hadn't seen in awhile. I don't even know how the topic came up, but all of a sudden, we'd moved from discussing the awesomeness of Game of Thrones to her boyfriend's medical issues. Brendon has ulcerative colitis, which is a form of inflammatory bowel disease.(If you don't know what that is, clicky-clicky on the link and it'll explain. Fair warning, though, there are some photos included on the page that are NOT cute.) It affects quite a few corners of his life and, as they've been joined at the hip (mostly) since they were in high school, more than one corner of my sister's life as well.

     Usually, our partners' respective medical ailments are something we can joke about with each other - "Damn, we sure know how to pick 'em, don't we?". It's our way of coping with the often-frustrating world of medicine, emergency rooms and hospital stays. Now, I have to admit that we don't usually commiserate about our fears for the future and I wasn't really sure why not. We're pretty close, my sister and I, and nothing has ever been off-limits in our discussions over the years. In fact, I've often told people that the next best thing to being in my head is being in Liz's, as they work in such a similar manner. Most of the time, anyway.

     On the day in question, Liz made some remark about her "boyfriend's broken colon" and how it was making their impending cross-country move a little more difficult than it would otherwise be. I remarked that yeah, I understood that sentiment, since I deal with my husband's Marfan's making things a little more difficult every day. At this, she rolled her eyes and remarked, "Yeah, Brendon's is a little bit more than just, 'Oh my back hurts sometimes.'" Not gonna lie, I was momentarily speechless at her flippant callousness. (It takes a LOT to render me speechless, so you can imagine how many thoughts were flying through my head at that moment.) Even when I did regain use of my speaking abilities, I wasn't quite sure what to say. I mean, what do you say to that?

      I have to make it clear, before I go any further, that my sister isn't callous by nature. She's as much of a bleeding heart as the rest of my family and she loves her brother-in-law as much as I love Brendon. (She's  been with Brendon for so long that I consider him my brother-in-law, for all intents and purposes.) At first, I couldn't figure out what possessed her to say such a thing or really, to cop such an overall attitude about my husband's disorder. She knew better than that, I thought. Upon further reflection, though, I began to wonder if maybe she actually didn't know better.

     I know I've mentioned before my tendency to research the hell out of things when I don't feel I know enough about them. That's exactly what I did when I found out that Brendon had acquired, somehow or other, the ulcerative colitis. I wanted to know everything I could about it - what it did to the body, what it could potentially do to the body that it hadn't done yet, how it would affect day-to-day life, all of it. Mostly, I wanted to know what, if anything, I could do to help him and my sister. That's what family does, in my world.

     Liz also researched the hell out of this disease, especially after the third or fourth hospital stay Brendan had to endure on account of the colitis. She's knows a fair amount about it know, enough that she can help him make informed decisions with regards to his treatment and care. She's also been a front-row witness to the devastating effects an illness like this can have on someone's life, like the multiple jobs Brendon has lost because he's been sick. However, she did not do any research on Marfan's Syndrome and therefore has very little idea of what it actually is and just how much of an impact it has on just about everything. Can you blame me for feeling frustrated and hurt by her oversight?

     Please don't think I'm suggesting that everyone in my and my husband's life should go out and read about his disorder until they're cross-eyed and their brain feels like it's going to ooze from their ears; it's not that at all. Almost everyone I know has so much going on their life that they can hardly keep it all straight and end up at the grocery store when they should be at a doctor's appointment. I expect no one to put their time and attention into something like this, which does not directly concern them. I do, however, expect them not to run off at the mouth when they do not understand what in the hell they're talking about. I see that as a basic courtesy; my sister apparently does not.

     Some people will probably read this post and say that I'm making far too big a deal out of nothing. In all likelihood, I will probably look back at this and think that it really wasn't much of anything after all. Right now though, it's a big damn deal to me. My family and friends are such a big part of why I'm able to handle my husband's disorder and everything that comes with it as well as I do, because I know that I've got that (usually) unwavering support behind me. When you consider that some key members of that family-and-friends network are on the other side of the country and not easily accessible, it really clarifies why I cherish those that are close to me so much and why it's so troubling for me when someone like my sister puts a tiny crack in the foundation.

No comments: