Sunday, January 24, 2016

The Lighthouse's Tale

     The past couple of months haven't been the most fun for my husband and I, not gonna lie. He moved back to Missouri after receiving a job offer (in writing, I might add), but continued bureaucratic red tape has resulted in his start date being pushed back repeatedly. He's got yet another start date scheduled for next week, but considering we've been running our household on just my paycheck for the past two months...yeah, my stress levels are at record highs. This is a lousy situation for anyone to find themselves in, and ours is compounded by the fact that my husband's disorder means that in addition to being without his income for the past eight weeks, we've actually acquired additional bills in the form of COBRA health insurance coverage. Or we would have, had that not turned into a nightmare all its own. That, though, is a story for another day, because tonight? Tonight is for something good.

     Last week, I received an email from a woman who works with The Marfan Foundation, and she said she would like a chance to speak with me on the phone, as she's been following this blog and wanted to discuss. I knew that my blog had been linked on their website for some time, but I had no idea who, if anyone, from the organization actually read/followed it. I was curious to see what exactly she wanted to discuss, and slightly nervous that perhaps I was in trouble for one of my posts that they'd seen. (Let's be honest here, I tend not to pull punches when talking about something that's so very important to me, and I know some of my opinions aren't of the majority.) Shockingly enough, my neurotic tendencies were unwarranted, as per usual.

     Without going into detail, the conversation centered on what I've been writing about since essentially day one - the day-to-day of what it's like living with Marfan Syndrome. I phrase it that way because even though I'm not the affected one, my husband is, I live with this disorder, too; it's not just him. As he's told me on more than one occasion, I'm affected by it on essentially every level that he is, with the very important exception of the physical level. It's absolutely the third person in our marriage, the thing that makes itself known in every conversation about our present and our future, the demon that sits down at the table when no one's invited it in. The good and the bad and the mundane and the ugly and the beautiful; all of it, especially the parts that so many seem to be so reluctant to talk about.

      So I'm going to keep talking about it, because apparently, there's help on the horizon. Knowing that they're going to be focusing more on quality of life issues is like seeing the lighthouse's beam cutting through the dark after far too long at sea. That's where my husband and I have been for the past few years as his health has gone steadily downhill - lost in the black, tossed around in the storms, and pounded by wave after wave of sickness, medical bills, impossible diagnoses, and God only knows what else. We've managed to keep from drowning thanks in no small part to our network of family and friends, plus the huge well of stubbornness that my husband and I regularly draw from. There have been more times than I can count that I have no real explanation for we couldn't just say, "Screw it," and let the downward spiral carry us on its trajectory.

     We didn't, though, not one time. We have ridden out every storm thus far, and finally, finally, there's hope that we may not have to keep fighting alone. There's hope that an organization much bigger and better-connected than we could ever hope to be wants to know, wants to learn, wants to do everything they can to tackle these issues. I'm going to make it a point to start writing more regularly, to bring our issues to light where others can see them. I'm writing a piece for The Marfan Foundation's website, hopefully to be published next month, as February is Marfan Awareness month, and my husband and I were invited to attend Heartworks St. Louis here in St. Louis. Needless to say, SO MANY opportunities on the horizon to talk about living with the Marfan-shaped elephant in our marriage.

      Here's hoping I don't fall on my face.


1 comment:

Tinman said...

Hi Kris. My name is Jay. I am the President of the St. Louis Chapter of the Marfan Foundation. I would love to chat sometime! I sent a Google+ meetup invitation. Reply and we can share some info in a slightly less public place. The chapter has a pretty active Facebook contingent. I'd love to add you to that too! Eileen from the Foundation told me about your blog. It is wonderful. Welcome back to St. Louis!