Monday, March 30, 2015

Real Solution #9

     One of the hardest things for my husband is talking about himself or his disorder, which are, too much of the time, the same thing in his head. Truthfully, when you live with it day in day out, it becomes more and more difficult to extricate the two, and they become one hopeless,warring tangle, a construct of blood and oil. I do it, too, though not, I think, to the same degree that he does. It's not a conscious decision on anyone's part, I'm fairly certain, but it's one that becomes harder and harder to change the longer we exist with it. Someday, both of us will learn how to make peace with his jacked-up genetics, but we're nowhere near that finish line yet. Still, I think he moved one tiny step closer this weekend when he agreed to talk to our friends' daughter for a school project.

     Our friends Adam and Carrie have a twelve-year-old daughter, and she was apparently assigned a genetics project in school. Rather than go for the standard "make a model DNA strand", which anyone in possession of toothpicks and glue has been doing since time began, she chose to interview my husband about his genetic disorder and create an information pamphlet about it. I think her choice shows initiative and an aptitude for thinking independently, but I'm biased. Long story short, she asked if she could conduct an in-depth interview with him, and he agreed.

     He was nervous in the couple of days leading up to it, and honestly, I think it was better that the question and answer session happened sooner rather than later, before he had even more time to think about it and worry over it. As long as I've known him, he's always been someone who has internalized whatever's going on in his head, good or bad, and the prospect of talking about not just himself, but the often-troublesome part of himself, was stressful. He never talked about not wanting to do it, though, and whether that was because he's fond of Riley or he knew that this was a baby step towards something bigger, I don't know. Hell, I doubt he knows. I doubt he even thought about it, for that matter.

     I sat in on the interview, as did Carrie, and I think it went really well. Riley came fully prepared with a list of questions, plenty of paper to take notes, and a recording app so she could revisit the conversation as needed to create her brochure. My husband explained how he was first diagnosed, that it was actually a gradual process, as a collection of symptoms was realized, rather than a positive blood test or something of that nature. He showed her the various physical manifestations, like his oddly-angled thumbs, and his wingspan that's wider than he is tall. (And he's 6'5", so that's saying something.)

     He explained the different surgeries he's had, beginning with a spinal fusion when he was twenty-four, and continuing until just a few years ago, when he had to undergo emergency eye surgery to repair a hole in his eyeball that he'd accidentally opened one night while sleeping. It's kind of gruesome if you look at it from a purely medical standpoint, but he handled it with no small amount of humor, so she wasn't overwhelmed by it. Plus, Riley digs the creepy, so it's not like she's easily icked-out.

     I don't know if it was the fact that he was speaking to a child, someone who never thought to pity him or judge the choices he's made in regards to his medical care, but he was pretty relaxed throughout the conversation. Some of that could have just been the particular child/pre-teen he was talking to, as well. Riley's a smart girl, well aware that my husband isn't healthy, and she just accepts it as part of him. I've never known her to feel sorry for him, or anything close to that. Though we've never talked about it, I get the sense that she views him as just another of her step-dad's friends; he's not her step-dad's friend who's sick, which is how more than one adult acquaintance has classified him. Sometimes, I really believe kids are far superior to their adult counterparts.

     She took a picture of his medical tattoo for the cover of the brochure, and I was able to find his spinal x-rays so  she could see the severe scoliosis that made his spine resemble a snake, plus the ones that showed his titanium hardware that's now a permanent part of his frame. I've seen them a dozen times or more, and every time, I'm shocked all over again that he was still walking around with that catastrophe.

     It was actually a really pleasant couple of hours, one that he became more comfortable with as the conversation went on. (I could see him start to relax and become more animated when answering questions, so I know he was feeling better about it as we went along.) I can't say I was surprised that it wasn't that big a deal, mostly because I never think it's a big deal to talk about myself. And I take such liberties here to talk about my husband that I don't give it a second thought to answer questions when asked. My feelings on the subject don't really matter, though, because I'm not the one who struggles with it.

     He does, and for good reason. There's so much there, things that he's working on, things I'm not ready to discuss, but I think Sunday was a good day. Maybe it was because Riley was a friend, maybe it was because she approached him with a kid's innocence, no judgment, just curiosity and a desire to know and understand. Whatever it was, I believe she helped my husband as much as he helped her, by cracking open, just the tiniest bit, a door that's been closed his whole life.