Thursday, October 15, 2015


     This Sunday, I'm going to do something that feels foreign and uncomfortable - I'm going to actively seek out other people with whom to talk about Marfan Syndrome and its effect on my and my husband's lives.

     That doesn't mean I'm going to go out looking for people on the street who look friendly and say, "Excuse me, do you have a moment to talk about Marfan Syndrome?" No. That's how you get branded the neighborhood creeper, and then people walk on the other side of the street when they see you coming. What I'm actually going to do is walk in the Marfan Walk for Victory, along with my best friend, because this is important, in more ways than one.

     I've been with my husband for six years, and writing this blog for four of those years, and I have yet to speak, in person, with anyone else who has Marfan Syndrome. Honestly, the vast majority of people I do speak with about it have no idea what it is, because so few people have ever heard of it. Isaiah Austin has certainly raised visibility of this disorder to some degree, but still, it's one of the ones that tends to lurk in the shadows, without much funding for research, or resources for those who live with it. It's frustrating for me, because it's not something that's easy to talk about, but the longer I, we, everybody keeps our collective mouth shut, the longer it stays in the shadows.

     It's easy for me to hide, in a sense, behind this blog, because one of the things the internet offers is a glorious sense of anonymity. It's not completely anonymous, of course, since I do post these things on my Facebook wall, and most people who know me in real life know I have this, but it does allow me a lot of freedom to say what I want or need to say without having to say the words aloud, immediately. That's huge for someone like me, who has a lot going on in her head at all times, which, when combined with a somewhat-impulsive nature, can result in saying things faster that I can consider the potential consequences of giving voice to those thoughts.

     I realized, though, that if there's any hope of my husband and I getting to a better place than we are/have been with regards to his health issues and waves they create in our world, I can't keep to the same path I've been walking for more than half a decade. We have to get out, have to at least try to find others like us, because I know damn good and well they're out there. Jesus Christ, we (or at least I, we're working on the "we") live in St. Louis, MO, home to one of the best Marfan clinics in the country. If we're going to find like-minded individuals, this is a pretty good place to start the search.

     So this weekend, I'm going to gather up my friend, and we're going to journey out to Queeny Park to see what we can do about meeting more Marfan people. By all appearances, it's a good community to be a part of, and I think I may even be able to add to it with my perspective. Or maybe that's just wishful thinking. Either way, here we go.


Jennifer said...

I hope you were able to connect with some great, supportive folks. The Marfan's community is filled with them, and it's wonderful that you are ready to reach out!

India Pearson said...

Just found this blog by googling "married to marfans." Something's gotta give in my life. I am a recluse, so reading is easier than talking about it. Reading on now...