Saturday, January 21, 2012

Sweet Year Old

     It's been a year exactly since I started this blog and thus started something that's been mostly a good thing, for me and quite a few others. When I started writing this, it was with the idea that I could possibly help a few random people to feel like someone else knew what they were experiencing in their lives as the partners of people with Marfan's Syndrome, a degenerative genetic disorder. I've never met anyone in my position or anyone in a position that's similar to mine, so I have to acknowledge that this was for me just as much as anyone else. I don't like feeling alone in this and, as I'm a rather talkative creature, I don't like not having anyone around to be able to talk things out with when he/I/we hit the wall. I was hoping to remedy both those situations, to some degree, when I first sat down in front of my computer.

     I think I've been met with a fair amount of success in twelve months' time. I've been contacted by family members who have opened up to me about my husband's disorder in ways that I don't know would have happened had I not started this blog. I've been e-mailed by people from around the world who have told me that they're in the same position and to not feel alone because even though they're halfway around the globe, they'd be willing to chat with me anytime. I've been messaged by others born with Marfan's who have told me that they, too, are in a serious relationship and worry about many of the things my husband troubles his mind with on a daily basis. They've told me that I've given them hope, entertained them, and made them happy to have found my "honest, funny writing".

     That's a pretty big damn deal to me, that I've made a difference, however small, to those relatively few people whom I will likely never meet face to face. I don't care that I will never meet them, never know what they look like or how they sound when they talk - I care only that something I did made a difference. It's a very small difference in the grand scheme of things, I know, but dammit, at least I'm doing something besides sitting in the corner bemoaning my fate. There have been more days than I care to count when I wanted nothing more than to curl up in bed and pretend that he's healthy, that none of the hospital visits ever happened. I didn't, though, because what the hell would that accomplish?

     Rather than pitying myself and my husband for something no one can change, I decided it would be a far better use of my time and resources to try and make something that could be helpful to others in my situation. It makes me feel better, too, to document what's going on and how things have changed. I can't keep it all to myself and I knew I couldn't be the only one, so this is the solution I hit upon. It's also helpful for both of us to have a sort of timeline and be able to use this blog to get a better handle on his disorder. Sometimes, when we read over old entries about this emergency room visit or that trip to the doctor, it helps us put it in perspective. Reading about it gives us a chance to remove ourselves from the equation for a brief period of time and look at things analytically. It's a good thing, I think.

     I will say that I haven't yet gained any great insight into living with Marfan's Syndrome and neither has he. It's just as hard as it's ever been and the last month and a half have been as close to hell on earth as I ever want to get. I may be able to write about it soon, but I may not. I have to figure out if my husband and I can handle committing the events to words and thus making them more real. That being said, we've also learned to communicate with each other about his medical issues better than we ever have because this gives me a forum to get it all down in a (mostly) cohesive form. Sometimes, when I'm too worked up to be able to articulate to my husband what's going on in my head, I can go to my computer and get it out that way. Then he reads what I wrote and we go from there. It's been a really good tool for us so far.

     My world hasn't changed because of this blog and I doubt very seriously it ever will. It helps me manage it, though, and it helps my husband be more at ease with the day-to-day of his disorder. There are still some people in my circle of friends and family who aren't supportive of what I've trying to do here and in fact are downright derogatory about it. It stings to know that, let me tell you, but at the end of the day, you can't please everybody, nor do I aim to. I've gotten far more support for this than I haven't and I'll take that blessing for what it is and run with it. I want to keep going, keep working to get my thoughts pushed out there into the wild so that someone who may not know how to can find them and recognize what they wanted to say but couldn't. So as long as I've got the ability to do so, that's exactly what will happen.

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