Tuesday, February 9, 2016

Learn to Fly

     I know, my last post was less than pleasant. Things have calmed down a bit since then, but we're still nowhere near good. It's a mess of an issue that relates to my husband's current job offer, and his future ability to work, but it's still too much of a cluster to begin relaying in a coherent manner. I'll get there, though, don't you worry. Meanwhile - Marfan Awareness Month.

    I'm probably not the best ambassador for Anything Awareness Month, because I tend not to be a social creature in the traditional sense. I mean, social media, yeah -that I can do. I blog, (not as much as I probably should, but I'm still here), I Facebook (can I use that as a verb?), I tweet, and I Instagram. I know there are others out there, but those are the ones I'm comfortable with, and honestly, it's more than enough for me to maintain those few outlets; it's not like I have a giant following or anything. Besides that, I'm just more comfortable behind a keyboard, where I can edit my thoughts before sending them out into the world, because I have a habit of running off at the mouth in person.

     I'm also aware that I'm not everyone's cup of tea, and the things I want/need to talk about as they relate to my husband's disorder are usually thorny things; no one wants to bleed in public, so I've found that this is better. My husband tried once when he first moved to St. Louis to partake in a Marfan-based support group, but found that the majority of the conversation ran to fundraising, fun-day meet ups, that type of thing. That's all well and good, and absolutely an essential part of life with Marfan's, but it's not everything. What he found was a lack of willingness to dig deep into the issues that he was so desperate to commiserate with someone about, issues that people were reluctant to bring into the light. This was disheartening, to say the least, and he never tried again.

     I think, though, that now is the time for him to give it another shot. I've always been aware of The Marfan Foundation, but I never really had much to do with them, until last fall. I decided then that moving back to St. Louis meant that it was the perfect time to reach out to others living with this disorder in some capacity or another. We have some of the best Marfan specialists in the country here in St. Louis, so it's not surprising that there's a fairly active Marfan community here, one which I've been nervous to become a part of up to this point. At this point, I've barely begun to test the support-group waters, but so far, so good.

     Full disclosure - I've never joined any sort of support group, or social group centered around his Marfan's, in part because I knew of my husband's previous experience, and I convinced myself that I wouldn't find what I was looking for, either. That's not to say that I didn't think like-minded people existed - I knew, and know, they do. I receive emails and chat messages from people all over the world, desperate to talk to someone about the ugly parts of what our lives are like. It hurts, physically, to read some of the emails, because I know their hurt, their frustration, their feelings of hopelessness - it's an almost tangible thing for me.

     I'm thinking though, as my husband and I sit here in an increasingly darker hour, that maybe I should look to someone else to help me turn on the goddamn light. Someone, oh, I don't know, WHO KNOWS WHAT THE HELL I'M GOING ON AND ON ABOUT?

      Right now, I'm still pretty passive in this new endeavor, waiting for people to start the conversation for me. I think, though, that this may be the right thing to do, to start making myself a more vocal presence in the Marfan community, and, by extension, my husband. He struggles every day with his disorder, in a hundred ways I will never understand, because when you get right down to it, I'm still the unaffected spouse. The flip side of that coin is that my position is one he can never fully understand, and I think we could both benefit from broadening our horizons, instead of picking at each other until one or both of us loses our minds.

     These feelings are still very much in their infancy, so when I do finally decide to venture out of my corner of the internet, I don't know how it's going to go. We're supposed to be attending the Heartworks St. Louis fundraiser next month, and I have to admit - we're both nervous. I'm more nervous-excited, mostly at the prospect of meeting people to whom I won't have to explain what Marfan Syndrome is. My husband is more nervous-nervous; he's never really come to terms with his disorder, despite the fact that it came over two decades ago, and he still gets twitchy and uncomfortable whenever someone recognizes that he's got Marfan's. So, we'll see what happens.

     My gut feeling, though, is that it's time to stop locking ourselves away and relying solely on one another for support; I think it's time to see if there's another way to go about this.

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