Friday, February 7, 2014


     Sometimes, when I get a message or an email from someone halfway across the world that I've never met and will never meet, it forces me to realize that there's an aspect to this (and I'm using the completely insufficient "this" as an all-encompassing term for the Marfan's part of my life) that I rarely if ever think about - goddamn, it's lonely out here sometimes. I don't admit that to elicit sympathy, empathy, or anything else in that particular emotional range. I'm saying it because I know it's true for more than just me and one of the goals of this blog is and always will be talking about this shit as honestly as possible without veering into oh-God-it's-so-awful-I-just-don't-know-what-to-do-with-myself territory. I don't always hit the right balance between honesty and flat-out bitching, I know, but I try, because as important as this is to me, I was recently reminded that it's not just me I'm doing this for.

     Occasionally, I get emails from people who have found my blog. It always makes my heart jump a little when I see an unfamiliar email address in my inbox, because someone's talking to me about what only we understand completely. I don't say that with pride, because like many people in similar situations, it's not a knowledge I'm happy to have. Rather, it's something I wish I never knew. I doubt very much I'm alone in that sentiment, though I'm sure there are Perky Pollys out there who would contradict me and crow about how much stronger their relationships are than other couples' because of the things they've endured.

     Well, yeah, that's why the saying is, "What doesn't kill you," you know? You either break or learn to withstand it, but that in itself is not a unique phenomenon. Almost everyone you meet has something going on in their lives that only they and others in the same/very similar situation can fully understand. The thing, though, about making it through the bad times with a minimum of scarring, is finding the ones like you and doing what you can to make it better for the rest of the class. That's the whole point of the exercise, as I'm sure I've said in some previous post, and will say again.

     So, now that I've given you a three-paragraph introduction to the heart of the matter, let me spell it out. I got an email from someone in another country who is also paired up to a partner with Marfan's Syndrome. It's happened before and I like to flatter myself that it will happen again, but that doesn't take any of the shine from each individual message. Without going into detail that's not mine to give, the note was essentially a light in the sometime-darkness for me, something to keep working towards. I gave comfort and solace to someone, helped them find someone who knew what it was like in their head and for that, I'm grateful.

     I question myself and my motives for writing this sometimes, though my husband has told me repeatedly not to. He's happy that I keep this blog, because he knows I need it as a place to let my demons run. He also knows that I consider this my tiny contribution to the world, that it makes me feel as though I'm doing something worthwhile. It's no cure for cancer, but I know, I have proof, that this matters, if only to a handful. It's more than enough, though, to keep me from quitting and just keeping it to myself, which would be simpler, I know.

     That's not an option, not really. I may walk away from this to gather my thoughts from time to time and I'm the first to admit that I haven't exactly been prolific lately. There's reasons, though. Part of it is that I need to gather myself to begin opening up about the really murky, darker blue issues that have been haunting my husband and I for the past two and a half years. I can't go there yet, but I'm content in the meantime, knowing that someone's out there, feeling a little less the worse for wear because of what I was able to get out of my head and into the world.


D.K.Style said...

My wife and I have an exchange program worked out. She deals with me and my Marfan moments, I try to deal with her Bipolar moments. It's tough sometimes, but equally. It gets dark but we know those times pass. Thanks for trying to help make the class better!

Jennifer said...

I'm so thrilled to find your blog. My father was diagnosed with Marfan's almost by accident in the 1983 in his 40s. Over the next nearly three decades, he endured nearly 20 medical procedures, including five open heart events. He was fundamentally a guinea pig for the disease and, as such, I take a bit of pride in knowing how many people he helped by enduring the craziness he did. He passed away in 2011 at the age of 72.

My brother inherited the gene and the disease. I did not. My niece and nephew have also been diagnosed with Marfan's. They are 16 and 13 now, on a preventative regiment, and doing great.

Anyway, I just wrote to say ... I feel you. Not as a spouse, obviously, but as a daughter, sister, and aunt. There is a little...I don't know...survivor's guilt, maybe? But I've been in the trenches, I've watched my mom deal with the trials and tribulations, and we're still standing.

If you ever feel the need to reach out, I'm always here. I'll be keeping a thought for you.

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