Monday, November 28, 2011

Fortunate Fool

     Every year around Christmastime, the local newspaper prints weekly installments of something called The 100 Neediest Cases. It's a list compiled by the United Way that gives a brief description of 100 local families that are in desperate need of food, clothing, financial assistance and other things that most people, myself included, tend to take for granted. I've known about this project since I was in high school, when my little sister won an art competition and her pen-and-ink drawing was selected to illustrate one of the stories. Every year since, I've made it a point to read about each of the families profiled and whenever I've had the money to spare, I've donated to whichever case makes my throat swell up the most. It's never much, but it's what I can do.

     This isn't the first year my now-husband and I have spent Christmas together, but it is the first time that reading these stories has made me pause and really think about what his Marfan's Syndrome means to our life together. In a lot of ways, it's a royal bitch, always making itself known at the worst possible times and very rarely allowing us to forget completely that it's there. We can't ignore it any more than the ticking of his aortic valve can be ignored. Maybe, though, maybe it's not as bad as all that. Maybe I let it become too much in my head and it blocks everything else out, or at least becomes so much larger that everything else seems insignificant by comparison.

      It shouldn't be that way, I'm thinking. It shouldn't be a struggle to try and focus on all the good I've got going for me, but it has been lately. The past four months or so have been the hardest we've yet experienced as a team and though I wish I could say it's beginning to ease up, it's not. In fact, I just got some seriously annoying news today that was apparently the straw the camel's back has been waiting for. I've kind of had it with the bad stuff, though, the feeling like the good is so far away, a speck of light that we're always slogging towards with little progress to show for our efforts. I'm really sick of that feeling, actually, so why don't I tell you about some of the things I'm really glad I've got, the things I couldn't be more grateful for if I tried? Yeah? Here goes.

     1. Just now, I am insanely grateful for my husband's friend Adam. He's actually much more like family to us than a friend and recently, when my head was just too damn full and I needed badly to release some of it, he was there. That's what love is, people - when your best friend's wife calls you and rambles nonsense for over an hour and instead of just giving canned responses or cutting the conversation off when you get bored with it, you actually listen and help her out. It's good stuff.

     2. By the same token, I don't know where I'd be without my friend Frederic. We've grown up together, experienced just about everything that can be thrown at a person in two short decades and we're still together. Frederic will always have my back, even if I'm wrong in whatever it is I'm doing. He loves me and I loves him and I'll always be grateful that we were assigned to the same second-grade teacher so that we could become friends.

     3. My in-laws. They accepted me unquestioningly, even though their son broke the news he was going to marry me before they'd ever had a chance to meet me. (Remember, my husband's from Charlotte, NC and we're in St. Louis, MO, where I've lived my whole life.) That's taking a whole lot on faith, but they did it. I've got a hell of a lot of love and respect for them.

     4. I cannot overstate the miracle that is having health insurance when you're dealing with a disabled person like my husband. I've probably mentioned this before, but even with the kick-ass insurance that we get through our employer, my husband and I have paid out at least two thousand dollars this year in co-pays for medicine, surgeries and doctor's visits. Granted, that total is for both of us combined, but when you consider that today was only my second doctor's visit this year, I think you can figure out on whom we spent the lion's share of that money.

     5. My family will never let my husband and I fall. Ever, not even a question. I don't to imply that his family would, because they wouldn't either, but my family is in close physical proximity, so they're the ones we have to call on when something goes down. Remember that one trip to the ER that had me really flipped out? I put in a call to my mother and she was all, "Oh, alright, I'm on the way," and by the time I got there, she was sitting in my husband's ER cubicle, trying to force him to eat his hospital food. When my husband recently had to quit his second job and we didn't know if we were going to be able to stay in our house, we knew that we'd always have a home with my parents. You know, the little things like that.

     6. You probably won't get this unless you're a gamer, but I'm grateful for my guildmates. There are a small group of them who are a little more, um, unruly than is probably accepted in polite society and these guys are the ones who can make my day better when everything else has failed. Granted, they don't know they have that effect on me. It's the fact that they carry on as normal, being rude, gross and generally obnoxious, that makes it so good. When I'm gaming with them or just listening to their always-entertaining banter in TeamSpeak, it's like a Marfan-free zone. I and my husband can both truly forget, just for a little while,  that he's not healthy. That respite is worth more than I can articulate.

     I could go on like this for pages and pages and the fact that I can makes me feel better in and of itself. It's an awful cliche, I know, but God, it helps to take a minute and remember everything you've got to be grateful for every so often. I don't do it enough, because the bad things demand so much more attention and brainpower. It's not that the good things are hard to remember; as you can see, when I sit down and dedicate myself to the purpose, it's really easy to think of all the good. And that tiny list? Not all the good in my life, not by a long shot.

Wednesday, November 23, 2011

Oh No, Not You Again!

     He's been getting head rushes with ridiculous frequency lately, has my husband. It's not that he's not used to them, since they've been a constant in his life for the past ten years or so, but they're not fun and they're starting to make their presence known in a more insistent manner. It was particularly bad a couple of weeks ago, when he felt as though he was going to fall over nearly every time he stood up from his desk. I know he really doesn't enjoy it when they happen this insistently, but there's nothing much to do about it except wait them out. Actually, scratch that - he doesn't enjoy them when they happen ever. 

    The most accurate description he's been able to come up with to describe them to me is that it's like having  a regular head rush, like when you stand up too fast after you've been sitting awhile, combined with a brain freeze from eating something cold too fast. It's painful for him and he's unable to see for a few seconds because his vision suddenly becomes nonexistent. At that point, my husband has to sit down before he falls down and wait for the badness to run its course. Though he's suffered from this nonsense for years, it took awhile to figure out what exactly was going on, because like damned near everything else with his Marfan's, it wasn't easily recognizable for what it was.

     Dural ectasia, while not present in every person with Marfan's Syndrome, does effect more than sixty percent of those who do have the disorder, including my husband. I shouldn't be surprised, really, since he's got just about every aspect of Marfan's present in varying levels of severity. What did surprise me was when my husband revealed that it wasn't identified as dural ectasia until sometime in 2006, a good decade after his spinal surgery. Given that he had to have all kinds of tests and CT scan-type things prior to going under the knife, I thought it would've been detected at some point and made it clear that he had some serious shit going on back there in addition to the scoliosis that he was there to have corrected.

     I think I'd heard of the term "dural ectasia" before I met my husband, but only because I'm a complete bookworm and read anything and everything I can get my hands on. I'm full of random knowledge because of it and if you're looking for a trivia partner, I'm your girl. In any case, knowing what the word is and knowing what the condition is are two completely different things. The short version, in the best summation I can manage, is that dural ectasia is the enlargement of the membrane that surrounds and protects my husband's central nervous system, i.e. his brain and spinal column. While not always problematic in the people it affects, my husband is one of those lucky ducks that suffers from headaches, head rushes, intense lower back pain and numbness in his legs as a result.

     Based on the (limited) information I've been able to find about it, it seems that dural ectasia can pop up at any time along the way, so perhaps that's why it wasn't found when my husband went in for spinal surgery all those years ago - it hadn't arrived on the scene yet. I've read that a CT, a mylogram or a spinal film all might clue the doctor in to what's up, but none of those are fail-safe methods. I'm still not completely sure why it took as long as it did to properly diagnose, since he's got what seems to be a textbook case. Not that I hold it against the medical community for taking awhile to figure it out; Marfan's is classified as a rare disorder, after all, and one can hardly expect their general practitioner to know every possible aspect of it.

     Truthfully, having a name for what's going on doesn't really change much. Granted, now that he knows what's causing the head problems, he can stop worrying that it's something more dire, like a tumor. That's a relief, but as there's no cure or really effective treatment for the issues caused by dural ectasia, it's just giving a different name to frustration. There's pharmacological pain management, of course, though I've mentioned before how ineffective that course usually is due to my husband's ridiculously high tolerance of all things narcotic. Beyond that...there's nothing else.

     I don't know how this is going to affect things when he does have to have his second spinal fusion, because in addition to thinning the dura itself, dural ectasia also thins the vertebrae. So that's exciting. With that part of it, the worrying about how it's going to affect him when he has his next spinal surgery, I feel like I'm borrowing anxiety because it's not something that's a reality at the moment. We've got enough actual things to worry about, most of them the mundane problems that everyone I know has to deal with, that I have no business looking for more. I know that, logically, but sometimes I find myself looking without realizing what I'm doing. Ugh.

     It'll get better soon, the frequency and intensity of the head rushes; they always do. This is just one more aspect of the whole that ebbs and flows as it pleases. It pisses me off every so often, but that's simply a manifestation of my frustration at seeing him in pain and being able to do nothing. It's not a new sensation and while I hope I get better at dealing with the frustration, at the same time I wonder if that's wrong. (Come on, becoming desensitized to your husband's pain? Does that strike anyone else as being more than a little fucked up? Thoughts for another day...) The best I can hope for at the moment is to drill the phrase, "Sit down before you fall down," into his head and hope it sticks.

Monday, November 7, 2011

Earthquakes Come Home

     It's semi-creepy, I know, but I love the feature on my blog that lets me see what phrases people type into various search engines that somehow land them here, on my virtual doorstep. Most days, there isn't anything too unusual, nothing that really piques my interest. Every so often, though, someone will type something that either pulls at my heart or just makes me perk up my ears, figuratively speaking. I experienced the latter when I logged in today to find that someone had searched for "eye dr's in charlotte nc that know marfans syndrome". Say what? I actually pulled my husband over from his computer desk so he could look at my screen and see the phrase, because it surprised me not a little.

     Don't get me wrong, I know there are hundreds of thousands of people who were born with Marfan's Syndrome, same as my husband. It's not like he's got a lock on the disorder or anything. Furthermore, I'm well aware that these people live in cities all over the world, even in different countries! (That was sarcasm, for those of you who were reading the last bit and thinking I was some kind of moron.) It's just that my husband's disorder is still technically classed as "rare" and what are the odds that of all the cities in all the world, another Charlotte-dwelling Marf would find my tiny corner of the internet? Um, they're actually pretty good, when you think about it. I've said more than once that my husband moved to St. Louis from Charlotte, I've got more than one entry published about his eye issues and the whole damn thing is about Marfan's Syndrome.

     Now that I've put on my thinking cap and solved that vital and thorny riddle, I have to pause and wonder why the hell I was so surprised in the first place. I think it's because I'm always a little taken aback when I see random hard proof that my husband and I are not alone in this. It's so easy to feel isolated, especially when there's a lot going on with regards to his disorder and it's immediate effect on one or more aspect of our lives. Though I almost don't want to say it, for fear of hurting a supportive friend or family member's feelings, the truth is that no one will ever completely be able to sympathize with you unless they've dealt with it themselves. They can empathize all day long and believe me, that sentiment is much appreciated. Knowing there's someone else swimming the same waters that you are, though, that's a different kind of comfort.

     My husband has never told me too much about his life in Charlotte as a Marfan's kid, probably because at that point he was busy pretending it wasn't there. That's always been a bit difficult to wrap my head around, considering that he was in Charlotte when he first got the diagnosis and that's where both of his major surgeries -spine and heart - were performed. Actually, scratch that - it's been damned near impossible for me to get my head around that line of thinking and despite my best attempts, I haven't even gotten close. From what I can gather, it was like he lived his life as if he didn't have Marfan's, paused whenever something came up that he couldn't ignore, like OPEN HEART SURGERY, then went right back to whatever he was doing. I'm veering off-topic, I know, and that whole mentality that I just mentioned? Those are several posts for another day, so allow me to get myself back on track.

     The Charlotte person who stumbled onto my ramblings - another part of why it surprised me is that while I know my husband couldn't possibly have been the only one with Marfan's Syndrome in a city that size, it sure as hell seems that way most of the time. As I mentioned before, despite having the most significant events related to his disorder occur within its limits, it doesn't seem that it started having a real effect on his life until fairly recently. (I mean, aside from the daily meds that he was assigned when he got his shiny new aortic valve.) He's never really been what you'd call a joiner in terms of social groups, but at least when he got to St. Louis, he gave attempting to make contact with other Marfs a shot when he attended a support group. Once.

     Theories abound as to why I've got it in my head that my husband's Marfan's Syndrome is a St. Louis thing as opposed to a Charlotte thing or, you know, a lifelong thing, but I don't know that any of them have any validity. Well, actually, I suspect one of them may be pretty close to the truth, but it's something I've got to discuss with my husband with a little more depth before I bring it out into the light of day. There's so much potential for hurt feelings and that's the absolute last thing I want. At the same time, though, my husband and I are slowly, slowly moving towards unearthing the painful parts that are the root of some of the problems we face together. The people and the place that he came from before he ended up here are such a part of it, maybe the whole of it; I just don't know yet.

Thursday, November 3, 2011

Gentle Execution

     When I first started college, I was seventeen years old and desperate to get out of the small town where I'd grown up. There were fifty-eight people in my graduating class and it seemed like every other person I ran into was a cousin of some sort, so you get the idea. (I know, this sounds like the plot of every small-town-girl-makes-good-in-the-big-city TV show ever aired, but stay with me here.) My father was insistent that I do two years at the local community college because it was the practical thing to do and I was even more insistent that I not. Luckily, I was accepted to a small, private university in St. Louis, which was about an hour or so from my home. Though it was expensive, I got a few grants and some loans and made it work. The biggest part of the reason I was able to make it work, though, had nothing to do with financial aid and everything to do with my grandparents.

     Their house was about a mile from the university and not only did they call me to tell me I could live with them, rent-free and with all the grandma-cooked meals I could eat, but they even built me a lovely bedroom and bathroom in their basement so that I would have more privacy. Amazing people, no? I ended up living with them for a little over three years, remain very close to my grandmother (I lost my grandfather last summer) and genuinely enjoy spending time with her. She's recently moved into a new condo and since I had the day off this past Tuesday, I thought I'd go visit. She's wonderful to talk to, very German and no-nonsense in her advice and opinions. It's also nice to catch up on what's going on with the rest of the family, because as we've grown up and started down our separate paths, it's become more difficult to keep tabs on everyone.

     I'm sure that by now you're thinking, "That's all just ducky and as heart-warming as can be, but what the hell does it have anything to do with Marfan's Syndrome?" The thing is, one of the topics that always comes up is my husband and the current state of his health. My family obviously knows about his disorder and though they're not the type to pry into what they view as my private business, they like to know what's going on. So I was telling Grandma the latest on my husband, giving her the run-down of our latest adventures, and the topic turned to aortic aneurysms. It's not the first time I've mentioned them to her, but when Grandma held up her hand and said, "Okay, let me stop you there for a minute," I thought maybe she'd read something somewhere and had a new snippet of information for me.

     Turns out, she did have some new info for me, but not of the variety I was expecting. The thing is, my great aunt passed away a couple of weeks ago and no one was one hundred percent sure why. My great aunt was my grandma's younger sister and it was hard on her, not only because she had lost a sister, but because it seemed to come out of nowhere. My dad was the one who initially broke the news to me and he had very few details to give. He knew that she'd been alone when it happened and it appeared that she'd fallen or something, but beyond that, we would just have to wait for an autopsy. Grandma, though, turned out to be better-informed that her son was.

     The cause of death, according to my grandmother, was an aortic aneurysm that let go suddenly. It must have been a large one, catastrophically large, because my great-aunt was gone almost instantly, from what could be deduced. When she told me that, I was a stunned for a minute, just stared out the window. As Grandma told me more of the details, I kept on staring and I'm pretty sure part of my brain shut down. I won't use any cliches like, "My blood ran cold, " or, "I felt a ball of ice begin to form in my stomach," because that's not what I felt. To be perfectly honest, I didn't really feel anything unusual at that moment, other than a sadness at listening to my grandma talk to me about her little sister's death.

     That's why I believe part of my brain quit on me right at that moment, because I was able to keep talking, to keep thinking, as if one of my worst fears hadn't been realized in a manner that hit much, much too close to home. It's a self-preservation thing, I think, like when you can't remember a traumatic incident. You were there, you experienced it, but your brain knows itself better than you do and so knows it doesn't have the capability to process what happened accurately. It would be too painful and cause too much harm to the body in which it resides, so it just blocks those minutes out like they never happened. A chunk of my brain had the thought, "Oh shit, it's real, he could really die just like that and I'd never be able to save him," and before it could get any further down that path to hysteria, it simply stopped. I'm grateful to it for that.

     I worry about an aortic aneurysm letting go within my husband every damn day. I know the statistics, I know how much more susceptible to them he is than a non-Marfan's kid, I know they're asymptomatic and that if one should burst, he'll bleed out before I can complete a call to 911. I know all this and have known it since before we were married. It's just part of it, this damned disorder that has no right to infringe upon our lives but does, in ways I don't even have words for. And that's saying something, because words are kind of my thing. When I found out exactly why my great aunt had died, how could I not think of my husband? How could I not wonder, "Is that going to be how it'll end with him? Will I have to be there, to see him slip away from me?"

     Please, whatever you do, whatever you say to me, please don't let it be anything along the lines of, "You shouldn't be thinking about these things, you should be cherishing the time you have together." Yes, I'm aware, thank you. I'm not saying that I dwell on this stuff all day every day, but it is something that runs through my head far more often, I'd guess, than a wife with a healthy husband. I think it's normal to have these thoughts and though it's scary as hell, I want to deal with it head-on. I have to deal with it head-on because if I don't, if I just cage it up and let it rattle around up there, it will grow into something far worse. Perhaps being confronted this way is or will be a good thing. Worst fear comes knocking on my door, yes, but people go on living. My family goes on, life goes on, the world keeps spinning. I have to know that whatever happens, the world keeps spinning.