Monday, November 7, 2011

Earthquakes Come Home

     It's semi-creepy, I know, but I love the feature on my blog that lets me see what phrases people type into various search engines that somehow land them here, on my virtual doorstep. Most days, there isn't anything too unusual, nothing that really piques my interest. Every so often, though, someone will type something that either pulls at my heart or just makes me perk up my ears, figuratively speaking. I experienced the latter when I logged in today to find that someone had searched for "eye dr's in charlotte nc that know marfans syndrome". Say what? I actually pulled my husband over from his computer desk so he could look at my screen and see the phrase, because it surprised me not a little.

     Don't get me wrong, I know there are hundreds of thousands of people who were born with Marfan's Syndrome, same as my husband. It's not like he's got a lock on the disorder or anything. Furthermore, I'm well aware that these people live in cities all over the world, even in different countries! (That was sarcasm, for those of you who were reading the last bit and thinking I was some kind of moron.) It's just that my husband's disorder is still technically classed as "rare" and what are the odds that of all the cities in all the world, another Charlotte-dwelling Marf would find my tiny corner of the internet? Um, they're actually pretty good, when you think about it. I've said more than once that my husband moved to St. Louis from Charlotte, I've got more than one entry published about his eye issues and the whole damn thing is about Marfan's Syndrome.

     Now that I've put on my thinking cap and solved that vital and thorny riddle, I have to pause and wonder why the hell I was so surprised in the first place. I think it's because I'm always a little taken aback when I see random hard proof that my husband and I are not alone in this. It's so easy to feel isolated, especially when there's a lot going on with regards to his disorder and it's immediate effect on one or more aspect of our lives. Though I almost don't want to say it, for fear of hurting a supportive friend or family member's feelings, the truth is that no one will ever completely be able to sympathize with you unless they've dealt with it themselves. They can empathize all day long and believe me, that sentiment is much appreciated. Knowing there's someone else swimming the same waters that you are, though, that's a different kind of comfort.

     My husband has never told me too much about his life in Charlotte as a Marfan's kid, probably because at that point he was busy pretending it wasn't there. That's always been a bit difficult to wrap my head around, considering that he was in Charlotte when he first got the diagnosis and that's where both of his major surgeries -spine and heart - were performed. Actually, scratch that - it's been damned near impossible for me to get my head around that line of thinking and despite my best attempts, I haven't even gotten close. From what I can gather, it was like he lived his life as if he didn't have Marfan's, paused whenever something came up that he couldn't ignore, like OPEN HEART SURGERY, then went right back to whatever he was doing. I'm veering off-topic, I know, and that whole mentality that I just mentioned? Those are several posts for another day, so allow me to get myself back on track.

     The Charlotte person who stumbled onto my ramblings - another part of why it surprised me is that while I know my husband couldn't possibly have been the only one with Marfan's Syndrome in a city that size, it sure as hell seems that way most of the time. As I mentioned before, despite having the most significant events related to his disorder occur within its limits, it doesn't seem that it started having a real effect on his life until fairly recently. (I mean, aside from the daily meds that he was assigned when he got his shiny new aortic valve.) He's never really been what you'd call a joiner in terms of social groups, but at least when he got to St. Louis, he gave attempting to make contact with other Marfs a shot when he attended a support group. Once.

     Theories abound as to why I've got it in my head that my husband's Marfan's Syndrome is a St. Louis thing as opposed to a Charlotte thing or, you know, a lifelong thing, but I don't know that any of them have any validity. Well, actually, I suspect one of them may be pretty close to the truth, but it's something I've got to discuss with my husband with a little more depth before I bring it out into the light of day. There's so much potential for hurt feelings and that's the absolute last thing I want. At the same time, though, my husband and I are slowly, slowly moving towards unearthing the painful parts that are the root of some of the problems we face together. The people and the place that he came from before he ended up here are such a part of it, maybe the whole of it; I just don't know yet.

1 comment:

Anonymous said...

Hi I just came on your blog by accident. My 18 yr old son has Marfan Syndrome. He was diagnosed before he was 2 so this is something we have been living with for quite some time. We live in Canada but I have found great support through the National Marfan Foundation in the USA. They have a great "Connect" where you can connect in real time with others effected by Marfan. Facebook also has some great pages. Attending the NMF Conference literally changed our lives. Let me know if you would like more information. Debbie Routly Baart