Tuesday, May 31, 2011

I Just Wasn't Made for These Times

     I was, in all likelihood, meant to be born about five hundred years ago and on a different continent. Well, that's probably not completely accurate, but damned if I didn't have fun at the Renaissance Faire this weekend with my husband. I swear, from the moment we walked in the front gates, I could not stop trying to convince my husband that it would definitely be in our best interests to quit our jobs and just follow the faire all over the country. SO much fun, and I promise you, I can rock a corset like few others. There were swords and Scots and royalty and people talking with bad accents, but most importantly, there was JOUSTING! With horses! And broken lances! And fake blood all over the place when one knight speared the other one and then slit his throat! A strange sort of scene to inspire in me such happiness, but I'm a strange sort of girl, so there you go.

     At the end of the day, when we were headed back to our car, I started thinking about what life would've been like for someone like my husband, were he actually to have been born in fifteenth-century France. I know - why couldn't I just enjoy the day and not bring my husband's disorder into it? Well, I didn't actually bring the Marfan's into anything; it's always there. As such, it was kind of second-nature to start down the path of "I wonder..." while we were walking. What kind of life would someone born with Marfan's Syndrome have had in Medieval times? For that matter, what kind of life would anyone with any kind of illness/disorder/birth defect have had? History answers that question with, "Short and unpleasant," which is no revelation. What did give me pause, though, is when I realized that the same answer could've been given, with varying degrees of accuracy, to the question posed only forty years ago.

     I know the life expectancy of someone with Marfan's has gotten better since the disorder was first recognized in 1896 and better still since aortic valve replacement surgery and similar treatments became a widely-accepted form of treatment. The fact remains, however, that as recently as 1972, the life expectancy for someone born with Marfan's Syndrome was only forty-one years old. That's four decades plus a year. You want to know what really scares me about that number? My husband will turn thirty-eight on Friday.

     I know it's gotten better, much better, since the Seventies and it's gotten better still in the 10+ years since that study was done. Even now, though, life expectancy for a person with Marfan's Syndrome who has has an aortic valve replacement and is taking beta-blockers (my husband falls into this category) is seventy-two. Much, much better, but does that seem to be kind of on the low end of the spectrum to anyone else? Maybe it's just me who thinks that, but I come from a fairly long-lived family. My maternal grandmother is ninety-seven and has a better social life than I do and my paternal grandmother is well into her eighties and completely self-sufficient. Then again, I never got to meet my paternal grandfather because he died of a massive heart attack days after his fifty-seventh birthday.

     Maybe I'm too focused on the numbers, but I just want to have as much time as possible with my husband. And before anyone gets all existential on me, I'm well aware that nothing is promised and today could be my last day with my husband for reasons totally unconnected to Marfan's Syndrome. I spend a significant portion of my day in La-La Land, so it's entirely possible that I could get taken out by a meteorite falling from the sky that I never saw coming. Stranger things have happened. I guess I'm just baffled by the lack of answers from the medical world in general.

     There isn't a cure for Marfan's, there's no proven treatment, and no one can tell us exactly what's going to happen to my husband as time goes by. Believe me, I'm well aware that there are many hundreds of diseases and disorders that fall under this heading, but my husband doesn't have those - he has Marfan's. He's on Losartan, which apparently has some good things going for it with mice, though nothing conclusive has been announced. (At least, nothing I've been able to find has been conclusive. If anyone has anything different, please tell me.) The valve replacement dramatically reduced his chances of an aortic dissection, but he's still got a heart, so there's still a chance of an aortic tear.

     When I get on this train of thought, I often just go in circles. This issue is not one unique to Marfan's Syndrome; it's much more universal than that. I'm sure I'm not the only one to sit and think, "Billions of dollars spent for researching this, that and every other abnormality and you can't give me a better answer than, 'Let's see what this does?'" Sigh. I want to kick myself sometimes for being so ungrateful for the miracles which modern science has produced in my husband's life, because they're huge. Without the aortic valve replacement surgery, who can say if he would have survived long enough to meet me? That was done when he was twenty-eight, twenty-nine, so maybe not. For now, I think it's best to not venture too far down the track of no-answers and just appreciate the vast improvement in life expectancy that's a result of the last few decades of research. I also think it's best that my husband and I attend the Renaissance Faire whenever possible, because jousting? WIN!

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