Monday, June 23, 2014

What Becomes of the Brokenhearted

     This post is more than a little difficult for me to write, because I normally don't comment on Marfan-related things outside of my and my husband's little world, and I do that on purpose. I am a firm believer in the idea of live-and-let-live, and as such, I try not to open my mouth too widely when other peoples' personal lives are the topic of discussion. Each of us can only do the best we can as we move through life, and sometimes we get it right, sometimes we don't. I know that some of the choices my husband and I have made regarding his health care haven't been the most popular among our family and friends, but at the end of the day, those choices don't belong to them - they're ours.

     Now that you know why I write what I do and don't, (a question I'm sure was keeping you awake at night, burning a hole in your brain because you didn't have the answer) I'm going to break away from that me-and-mine-only mentality for a little bit, because I feel like I have to. As isolating as my husband's disorder can be sometimes, I'm aware that some of that sense of isolation is self-imposed. We generally don't get involved in the larger Marfan community, mostly because it makes my husband uncomfortable. At forty-one years old, he is still not okay with his disorder, not any part of it; he doesn't like feeling different, looking different, having to go to the doctor so frequently, nothing. His attitude, most days, is that he thinks about it so much anyway on his own time, he doesn't want to be actively involved with it during his down time.

      Keep in mind, we're both still evolving on that front, as a couple and as individuals, so there's every possibility that as time goes on, one or both of us will want to become a bigger part of the Marfan community, or at least a stronger voice in the conversation. And with that said, I couldn't help but notice this morning that Isaiah Austin is just about everywhere you look on the internet; I'd have to be living under a rock not to notice the story.

     Long story short, he's a young man who's a very talented basketball player and was days away from an anticipated NBA career when he received what I'm sure was nothing he wanted to hear - a diagnosis of Marfan syndrome. Apparently, (and keep in mind, I'm reading the same articles as everyone else and getting the same info) he had a retinal detachment when he was sixteen. That, combined with his above-average height and long, thin limbs, makes me wonder how in the hell nobody caught it before now, but that's really neither here nor there.

     I mean, when I first showed my husband the story, that was his first question, as the initial suspicion for Marfan's is usually aroused when someone notices one or more symptoms and starts poking around, medically speaking. Knowing what I do now, yeah, I would've probably questioned what the underlying cause of a teenager's retinal detachment was, but the first part of this sentence is key. "Knowing what I do now," - not knowing changes everything. Marfan's is still classified as a rare genetic disorder, and it's one of the tricky little bastards that can pop up out of nowhere. According to The Marfan Foundation, 3 out of 4 people who have Marfan's have inherited it, but that leaves a percentage of people who are first-generation, meaning it's the result of a random genetic mutation. Random. As in, no one saw this coming.

      I know the kinds of choices my husband has been forced to make as a result of his diagnosis. Was it a good idea to move over 600 miles away from his specialist/cardiologist at Barnes Hospital in St. Louis? Can we find him the same level of care here in Charlotte, and if not, are we endangering his health? What about kids? That's an insanely frustrating puzzle that we haven't been able to solve yet, because it's a heritable disorder and my husband is adamant about not passing it on. Adoption is crazy-expensive and many countries won't even approve you for adoption if you've got any major health issues. (Believe me, I've been researching.) There are other issues there, which I'm not getting into right now, but the point is, as much heartbreak as my husband's faced over the years due to his disorder, I don't know that it compares to what Mr. Austin must be feeling.

     Honestly, I had never heard of this person before last night when the story popped up in my Facebook feed. I don't know anything about him, his training, his education, his hopes and dreams beyond that he was clearly working hard to be able to make his life's work playing basketball in the NBA.  And now that's gone, through no fault of his own or anybody else's; sometimes, them's just the breaks. According to social media, (always the most accurate source of information) he's handling the news well, and I truly hope he continues on with his life in such a positive manner. He seems to be handling himself with an admirable level of grace, and that speaks volumes about his character.

     In keeping with today's theme of breaking character, I'll go so far as to say I'm sending good thoughts this young man's way, which is something I generally don't do. Not because I'm an uncaring little snot, but because "sending good thoughts" typically accomplishes not much of anything, and I like to be a bit more pro-active than just "thinking about you" when trying to help someone. This time, though, it hits a little closer to home.

     

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