Wednesday, August 24, 2011

The Resistance

     My husband has been seeing that chiropractor for a couple of months now and it seems to be having some positive effects on him. That's always a good thing because it's such a hit-and-miss methodology when it comes to managing his disorder. I'm pleased, too, that this new treatment seems to be helping not only the physical manifestations of the Marfan's, but also the effects it has on his head and his spirit. It doesn't often happen that we find something that's successful in treating his physical ailments, so to have found something that apparently works on both his body and soul, that's pretty exciting for me.

      Obviously, I don't know exactly what's going on in his head regarding his health, nor do I know what's gone on in there through the years. We talk about it quite a bit of course, but I'll never know everything. That's as it should be, I think, because no matter how much you love someone and want to share with them, you have to keep some things for yourself. I know he thinks some bad things about himself because he's not well and the fact that they're completely unwarranted makes no difference. My husband is a stubborn and sometimes irrational creature and if he wants to believe that he's never going to be as good as the guy next to him because of his disorder, then that's what he'll believe.

     Since he's started with this chiropractor, though, I've begun to see a subtle change, one I'm not even sure he's aware of. It's like he's fighting back against the physical pain, the head trips he gets sent on, all of it. Granted, I've only been with him for about two years and only knew him for about a year prior to that, so I'm probably not the best one to judge whether or not this phenomenon is new to him. However, based on my limited knowledge of his younger years and my understanding of who he is as a person, I feel pretty confident in saying this attitude adjustment is a first-time deal.

     How did I come to that conclusion, you ask? Well, from what I've been told by my husband of the time before I knew him and the stories of their shared adventures I've been told by Adam, I know that his health wasn't really at the forefront of his mind. To be fair, my husband didn't have his heart surgery until he was twenty-eight, so the blood thinners and beta blockers were a nonexistent issue for the majority of his twenties. The spinal fusion happened when he was twenty-two, though, and he knew without a doubt that he had Marfan's Syndrome. Most people would take both of these things into account and adjust their lifestyle accordingly, but not my husband.

     The easiest way to sum up how my husband behaved during that time period is to say that he rather ignored his disorder until he was presented with something that needed to be tended to immediately if not sooner, like his heart and its faulty aortic valve. He went on like that for quite some time, right up until the time we got together, in fact. I don't want to make it seem like I was the one who changed his way of thinking, but I tend to handle issues head-on instead of pretending they're not happening until I can't ignore them any longer. In a way, my husband had no choice but to become more proactive about his health if he wanted to peacefully coexist with me.

     That change in thinking is all well and good, a positive step for him, but this attitude I've been seeing since he started with the chiropractor is something a bit beyond that. It's like he's got more hope now that maybe things don't have to be the way they always were. For example, I've noticed him calling into work less lately and it's not because he's not in pain, but rather because the chiropractor has told him that he needs to try and move as normally as possible when his muscles knot up. After the first few days, which no doubt sucked, it seemed to get better. It was almost like my husband didn't believe he could push through the muscle pain before now, but once the doctor told him to give it a try, he was startled to realize that he could.




Monday, August 22, 2011

Time in a Bottle

     The other night, when my husband was lying on the living room floor after falling down the basement steps, he said to me, "I wish I could bottle up that time we had together before I started getting this bad." I didn't say anything in response, because I was afraid that if I tried, the truth would come out of my mouth and that's exactly what he didn't need just then. What my husband needed in that moment was reassurance from me that we would get through this latest tough spot, that the painkillers would kick in soon, that he would be able to sleep through the night and make it to work the next day. What all that surface nonsense means is that what he really needed to be reassured of was that our best days weren't behind us. I have to admit, I couldn't promise him that at the time, any more than I can promise it now.

     So I did something that I didn't necessarily like, but had to do - I lied. That sounds awful, to lie to your ailing husband as he suffers through another painful evening, but before you start casting those stones at me, let me tell you that i look at it as a necessary evil. I can't be the only person in the world who's done it, said something they didn't truly mean or believe, but gave voice to it anyway because they knew it's what the other person needed to hear at the time. Besides that, my husband knew it wasn't the truth even as I was saying the words. It was what he needed to hear and believe, though, so that's what he chose to do. Some might look at that as burying our heads in the sand, but I would argue that it's just a way of taking a tiny mental vacation in order to retain some sanity.

     The thing about it is, I really believe sometimes that the best of our days are behind us and I know he does, too. We haven't even been married a year yet, but his disorder has seemingly kicked itself up a few notches in that short time span. I feel like we have ever-increasing emergency room visits, some of them secret, some of them not. It's beginning to seem like the nights he's not in pain when he goes to sleep are far fewer than the ones when he is in pain, though my perception of that ratio could be skewed because the nights he's in pain are so much more difficult to get through. He's much more tired than he used to be, just on a day-to-day basis, and the second job is rapidly becoming something that's just not feasible.

     All this is what we contend with every damn day and neither he nor I can deny the knowledge that it's only going to get worse. Marfan's Syndrome is a degenerative disorder, people; it's not something you come back from. I try to be grateful that we're in St. Louis and luckily, have access to the very best the country has to offer in medical care for a Marfan's patient. That gratitude only holds out so long, though, before I start thinking about how there are so many aspects of this damn disorder that no one can do a thing about. Sure, my husband has had his defective aortic valve replaced with one made from titanium, thus dramatically reducing the risk of death from aortic dissection, but what about the rest of his body?

     Marfan's Syndrome is a connective tissue disorder and it's sure as hell not picky about what it affects. My husband's case is closer to the more severe end of the spectrum, which makes his treatment all the more difficult, I'm sure. How do you a treat a full-body breakdown? I mean, that's essentially what's happening here. His spine already has three titanium rods and all the screws to hold them in place, he's got the aforementioned valve and the piece of garden hose that came along with his aortic root replacement, and he's also got a plastic lens in his eyeball because his own was useless. The surgeons can keep replacing pieces until the cows come home, but they can't replace the whole.

     What if my husband was never intended to make it this long? I know, it's a really morbid and rather disturbing thought, but it's a theory that he and I have been kicking around lately. Prior to aortic root replacement surgery becoming the new hotness for Marfan's patients, the average age of survival was thirty-two. My husband just turned thirty-eight, so you have to wonder what that's all about. Some will point out that with advances in medicine, the average lifespan for a Marfan's kid is now the much more reasonable age of seventy-one. That's also true and it's something I'm grateful for every blessed day. Keep in mind though, that there are also many more cases of Marfan's Syndrome being diagnosed than ever there were before and consequently, many more mild cases popping up to push that survival age ever-higher.

     Unfortunately, my husband does not fall into the "mild case" category. He gets to experience just about every aspect of Marfan's available and it's so much less than fun for both of us. Actually, I'd venture to say that it's just as hard on me as it is him, even though he's the one who has to deal with the physical repercussions. I'm sure that doesn't make any sense, but try for a moment to imagine how you felt the last time someone said something insulting to your beloved. Odds are, you took it harder than they did, right? You were indignant on their behalf and, if you're anything like me, harbored fantasies of putting the detractor squarely in their place, hopefully in front of a large audience.

     I think I worry about my husband's quality of life far more than he does. I don't know if it's because I'm healthy and he's not, so the contrast is that much sharper or if it's because he was born with this, so he's never known anything else. Or maybe it's just that I love him so much that seeing him in any amount of pain at all is terrible to watch. I just don't know. I do know that while I'm afraid once in awhile that the good times are over, I believe that's just fear and negativity getting the better of me. It happens; I can't be upbeat about this all the time, though God knows I try my best.

     Instead of wishing to bottle up past times so that we can put them away and dwell on them, my husband and I need to learn to adapt. It's going to be a hell of a thing for both of us, as I do not handle change well and my husband is a champion in avoidance when he wants to be, but it's the only solution that I can see. And even that's not the right turn of phrase, because it's really more of a change in perspective than a solution to a problem. There is no solution to my husband's medical issues, but there are better ways to handle it, better ways to manage our lives so that it's only one small part of the whole, not the hulking monster around which everything else must be adjusted.

Saturday, August 20, 2011


     The truth of the matter is that you really do start thinking and wondering about the strangest things when you're married to someone who's chronically ill with an off-the-beaten-path disorder. Before I met and married my husband, who was born with a degenerative genetic disorder called Marfan's Syndrome, I never really thought about how too many leafy green things in one's diet could be detrimental, rather than beneficial, to one's health. I never considered how you would find shoes to fit a person with size 16 feet and 36x36 pants. I never wondered how someone who is six-foot-five would fit in a regular-sized bed. (The answer to that one is that he does, but his feet hang off the bottom if he doesn't curl up a bit.)  Just recently, I found a new oddity to wonder about - what happens when you use an automated external defibrillator, or AED for short,  on someone with a titanium heart valve?

     I know, I probably shouldn't even entertain the possibility of my husband having a for-real heart attack when we've got plenty of other problems to keep us occupied without throwing hypothetical cardiac arrest into the mix. I've actually only very rarely considered what would happen if my husband did have a heart attack one day because I'm always so concerned with the ever-present threat of an aortic aneurysm and its eventual rupturing. Considering that that particular scenario would most likely be fatal (only a 10-25% survival rate if the victim gets immediate treatment), I've not put much effort into finding other ways to keep myself up at night worrying about my husband.

     We recently took a class, though, on how to use an AED and that's what started the wheels turning in my head. I think I'm like most people in that I always thought of those electric paddles that the doctors use on TV whenever someone's heart stops. You know, when they yell, "CLEAR!" and shock the life back into some poor soul whose body has just been jolted a foot off the floor from the electricity that was sent zinging through them. Apparently, it's not that way.

     There are no paddles; there are instead little sticky pads that you peel and stick like a band-aid. One goes on the chest, the other goes around on the side of the torso. Plug the wires into the main box part of the apparatus and wait for the little voice to tell you it's okay to push the button that delivers the juice. I was told in this seminar that the whole ritual is pretty much idiot-proof, as it's impossible to shock someone on whom a heartbeat, however faint, is detected.

     That's good to know, 'cause I certainly wouldn't want to be responsible for accidentally stopping someone's heart when I was trying to accomplish the opposite. (By the boo, just because I sat through a thirty minute session on how to use an AED in an emergency doesn't mean you should take what I just wrote as gospel truth. I'm not anything close to qualified to instruct anyone on how to use those things, so please don't go skipping off thinking you know what you're doing just because you read this blog post. Don't be dumb.)

     That's all well and good, right? Now I know how to save someone's life if they're in cardiac arrest. Yay me! We were halfway through the session when the instructor pointed out that should we ever find ourselves needing to use an AED on someone, we should quickly scan their chest to be sure there isn't a scar and a raised shape under the skin that would indicate the person had a pacemaker. If that happens, just don't put the pad that delivers the shock over top of the pacemaker, 'cause that's one type of electrical stimulant conflicting with another type and that's bad (or something like that.)

     I remember only the most basic principles of conductivity from my high school science classes, but if it's a bad idea to mess with a pacemaker, it's probably a bad idea to send an electrical current through someone's heart if they've got a piece of metal embedded in it, right? That's what I started wondering as this seminar was progressing.  It goes hand-in-hand with my previous wondering of whether or not his heart could physically withstand a shock like that, since the tissue it's comprised of isn't really as strong as a normal persons. I mean, what if the electricity was too much for a weak spot to handle and my husband started bleeding out?

     Granted, I've only mulled that possibility over in my head once or twice in the whole time we've been together, but it could happen, couldn't it? I know it's a fairly small amount of juice that gets delivered when someone utilizes an AED - it's usually between 150-200 joules, but can be as much as 360 joules, depending on the particular AED that's being used. (No, I have no idea how that relates to wattage or volts. I googled it and found some insanely complicated formula for figuring it out, but I typically don't go much beyond 2+2=4. Words are my friends, numbers are the devil.) So you've gotta figure, if part of his heart needed to be reinforced with titanium and Dacron just so it wouldn't self-destruct during normal operating procedures, surely it's not a good thing to push it harder, even if to (theoretically) attempt to re-start the damn thing.

     It's a bad choice all the way around - either die of a heart attack because you can't withstand the procedure needed to bring you out of full cardiac arrest, or bleed out because the method used caused you to spring a leak somewhere. (I was initially worried that the valve's conductivity would cause the heart issue surrounding it to be fried like bacon, but I think the Dacron seal would prevent that. So my husband's got that going for him.) Now, in all likelihood and with a little bit of luck, this is a scenario which will never come to pass. Heart disease doesn't run in my husband's family (his Marfan's notwithstanding), so I think we'll catch a bit of a break on this one. Now, if I could just train my head to not go off on these little sojourns that serve no purpose but to make me twitchy and stress, we'd be in pretty good shape. Relatively speaking, of course...

Thursday, August 18, 2011

Bleed the Freak

     Blood drive at work today, whoo-hoo! (That was sarcasm, for those of you who couldn't tell.) I, like the vast majority of people, don't actually get excited about the prospect of being stuck with a needle. I know it's for a good cause and all, but it's just not my cup of tea. My husband doesn't donate blood, either, though his reasons are a bit different than my own. Having been the recipient of a titanium aortic valve and undergoing aortic root replacement surgery when he was twenty-eight, he's now on Warfarin for the rest of his life. Having been born with Marfan's Syndrome, he'll be on beta-blockers the rest of his life as well to keep his blood pressure under control. In short, the man's blood is tainted.

     That's not a terribly unique issue, I know. Hell, my own mother's been on Coumadin for years. The thing about blood drives isn't so much that my husband can't donate - it's the why he can't donate and all of the obligatory explanations that come with his initial refusal. See, one of the tricky things about having such an unusual disorder is that, inevitably, the people you're talking to have never heard of it and therefore know absolutely nothing about it. Adding to the fun is the fact that the more you tell someone about it, the more they need/want to know in order to fully understand what it is you're trying to tell them. It's a snowball effect like nothing you've ever seen, believe me.

     Depending on who he's talking to, discussing his disorder can be a very uncomfortable thing for my husband. He hates admitting there's something wrong with him and when he has to start from the ground up with his explanations, it just becomes nothing but painful. There's really no way around it, though, because people aren't asking to be malicious or nosy - they just want to know why he can't donate like everyone else is. I understand that, because who doesn't want to do a good thing by rounding up as many people as possible to potentially save lives? It's yet another thing that should be simple, but isn't.

     I think there's also a layer of guilt associated with not being able to donate blood, though that's not something unique to Marfan's, either. I know plenty of people who can't donate blood not because of a medical impairment, but because of something as simple as a fear of needles. When I point this out to my husband, though, I really don't feel that it makes much of a difference to him. In his head, it's simply one more thing that he can't do, one more thing that marks him as unwell. There are so many things that have that effect on his head that I choose my battles now instead of trying to fight his insecurities on all fronts every time they pop up. This one is pretty minor in the grand scheme of things and only an issue once or twice a year, so I've decided it can be pushed off to a corner of my mind that I don't visit very often, if ever.


Wednesday, August 17, 2011

Long Way Down

     Thus far, it's been a bad week for my husband and I. He fell down the steps in the basement on Monday night and has yet to recover from it. It wasn't one of those head-over-heels tumbles that you see in comedies, though that may have been better for him had that been the way it went down. What actually happened was no more complicated than socks + hardwood stairs = falling on his ass. Like just about everything else in his life, it can't be that simple, though. I didn't actually see him fall, as I was in another part of the basement and only heard him land on the stairs. When I got to the scene of the crime, I found him laying on the stairs, trying to catch his breath.

     Apparently, one of his feet slipped out from under him near the top of the stairs and he landed on his back before continuing the slide down to the bottom. I've fallen down the stairs in the same fashion more than once myself, as have most people I know. It shouldn't have been a big deal, except for the fact that when he went down, my husband landed on his spine, which we all know is a delicate entity on its best day. I'm sure his muscles tensed up as soon as his body realized what was about to happen, so in the three or four seconds that passed while he was making his rapid descent, the muscles in his back knotted up tight and didn't release.

     I asked him if he needed to go to the hospital and he refused, giving his reason as having used up all his paid leave at work and not wanting to take yet another unpaid day. Probably part of that decision was sheer stubbornness layered over top of embarrassment as well, if I had to venture a guess. My husband has to spend enough time in emergency rooms due to circumstances beyond his control and he hates it. How much worse would it have been for him knowing that he was only there because of clumsiness? All of this ran through my head in the span of about twelve seconds and then I watched him pull himself up using the handrail.

     I know I'm leaving myself wide open to criticism with that last little bit - why the hell didn't I rush him to the hospital immediately? First, because he's a grown man who can make decisions for himself and is actually much better equipped to do so that I in many instances. It takes a hell of a lot of trust, but at the end of the day, I do not know what it feels like to have Marfan's Syndrome. I can empathize all I want, but only my husband can judge the levels of pain he's in and only my husband can decide whether or not it's something that he can push through. He said he didn't want to go to the hospital, didn't want to miss another day of work and so we stayed home.

     Sometimes laying flat on his back helps when it's spinal pain, so I helped him make a pallet on the living room floor with some blankets instead of getting him into our bed. It might sound counterintuitive to some, but those who have back problems will understand that sometimes the soft bed is not the best option. He wasn't quite able to bend enough to get from a standing upright to a prone position on the floor, so he just kind of dropped to his knees and then crawled over to the pallet. Again, I know it sounds like I just stood there and watched all this happen without raising a finger to help, but you need to understand that when his back is involved, it's very easy for me to do more harm than good. The best course of action is for me to watch him carefully while he does what he needs to do and be ready to step in the moment he asks for help. I promise you, I know what I'm doing here.

     It was a long night, though not our first and surely not our last. It's two days later and while my husband is up and moving around, he's still in a great deal of pain. It's one of those things that he's beginning to realize he may just have to work through, because there simply aren't any alternatives. The drugs don't really work anymore, except to take the very finest edge off, and the one that does work just results in an inadvertent addiction and consequent withdrawal. The chiropractor seems to be having some success, but he warned my husband just last week that it's not going to be straight-ahead progress with the chiropractic treatment. The doctor said to think of it more like a roller coaster that a straight uphill chart, because that's what it's going to be. It's something, though, and that's better than nothing.

Tuesday, August 16, 2011

The Ghost of You Lingers

     As so often happens, a conversation I had with my husband the other night started me thinking about things that I probably wouldn't were it not for the fact that he was born with Marfan's Syndrome. I have to confess, in this instance, when I say conversation, what I really mean is argument. It was over something stupid and petty, as most arguments the world over are and I eventually realized that whatever it was we were arguing about wasn't truly the problem; it was merely the trigger. I think that's a far more common thing than most people are willing to admit, that their arguments aren't really about the immediate issue. Rather, the immediate issue is just the thing that brought the underlying issue to light.

     I think most couples would agree that the vast majority of fights that occur between partners are fairly trivial and oftentimes the result of one or the other having a bad day/being overly sensitive/taking a seeming benign comment the wrong way. It happens to every damn one of us, medical issues or no. This is nothing exclusive to Marfan's Syndrome, not by a long shot. What is unique to my situation, though, is the fact that the underlying issue was something that began long ago, before I was ever in the picture. I won't disclose exactly what it was, out of respect for my husband's privacy, but it set the stage for a lingering sense of "I'm not good enough".

      One incident, then two incidents, then three, then more. They mostly occurred during his high school years, which can be either the best time of your life or a four-year hell from which you can't wait to escape, depending on which variables you're working with. In his case, the variables were very much working against him. Six-foot-five by the time he was fourteen and the fact that he never broke one hundred and forty pounds does not add up to make a happy high school experience. He knew something was wrong with his health by this point in his life, but the actual diagnosis of Marfan's Syndrome was still something only whispered between his doctors. No one would just come out and say what the problem was.

     We've never talked about it, but I think that made it even harder for him to deal with, the not having a solid reason for looking and feeling the way that he did. I would think that it would've been easier on him if he could've just pointed his finger at some disease or disorder and blamed it on that. (I know, he actually does have a disorder, but since he wasn't really aware of it at that time, it's a moot point.) I know how difficult those formative years were for me and I was relatively normal-looking. Undersized and smart-assed, yes, but nothing that would immediately peg me as different. I don't like imagining what it was like for my husband, knowing there was something very obviously unusual going on and not being able to do anything to disguise the fact.

     The point I'm winding my way towards is that I think these episodes of adolescence affect people with disorders like Marfan's Syndrome more deeply than they do others. Speaking for myself and the handful of close friends I've informally surveyed on the matter, these memories of teasing at the hands of immature peers have long since lost any sting they may once have held. I can look back on incidents that would've bothered me for days when I was fifteen and laugh at the idiocy of the boys who used to mock me mercilessly for no other reason than that they didn't know how to properly flirt. In short, I don't carry any of it with me any longer. The few insecurities that remain with me are of my own creation and cultivation and have nothing to do with anyone else's opinion.

     The same cannot be said of my husband. Though I think the world of him, he does not. It all goes back to that idea of knowing you're defective right out of the box. You see, when the mean kids would try to level insults at me, they tended to either A) stick with me for a while, if I was having a bad day or B) bounce right off, because I knew they were without merit. It was usually the latter option, but even if it was the odd occasion on which the first was more appropriate, whatever was said never truly took root within me. My husband, though, not only allowed the ugliness to take root within him, he allowed it bloom because somewhere in his mind he believed it.

     He believed and probably still does, to some extent, that he was weird, ugly, weak and anything else the cruelty of youth could come up with to throw at him. That's why they affect him still, those incidents from all those years ago - because he truly believes they and their associated insults are accurate. To this day, those bad thoughts that are lurking in the corners of his brain cause problems on multiple fronts. Here at home, I know the reason we have some of the petty fights we do is because it's so easy for him to believe that things that come out of my mouth with absolutely no forethought are carefully crafted barbs meant to take him down a peg or two. Of course that's not the case and it's actually rather hurtful to me to think that he believes me capable of such meanness towards him, but I do understand where he's coming from.

     It's not just his interactions with me, either. Any criticism directed towards him tends to be taken very personally, whether it's meant that way or not. A supervisor's questioning of a project that he's been working hard on can be seen as a direct critique of his skills and abilities, though it's likely not meant that way. A family member's hesitation to jump whole-heartedly behind a plan of his (for example, wanting to have his best friend ordained online and marry us instead of a traditional minister) is perceived as a total lack of support for him as a person. It's not, but it feels that way to him and it's just one more thing that breaks my heart when I think about it.

     I'm trying, I really am, to build him up so that he's got a steadier foundation on which to stand. I suspect that I'm the first one in his life to attempt such a project, but that says more about my husband than it does anyone else in his life. I know for fact how much he's loved by his family and friends; it's just that he is notoriously close-mouthed about ANYTHING related to his disorder and I can't imagine why anyone would try to pry into that area of his life. It's a touchy subject under the best of circumstances and when you're possessed of as sour a disposition as much husband is sometimes, no one can be faulted for not venturing into that thorniness. I'm going to be that person, though, or get my head bitten off trying.

Thursday, August 11, 2011

Only An Ocean Away

     When I checked my e-mail earlier, I was kind of surprised to find a new one waiting for me. Don't get me wrong, I get spam and e-mails from family members and e-bills just like the next guy, so it wasn't the fact that I had a new message waiting for me that got me all excited; it was the specific e-mail account in which I found the message that caused such a reaction. I, like almost everyone else, have multiple e-mail accounts. The one I use for this blog, however, is one that I use only for this and nothing else, so when I see a message sitting in that in-box, my heart always picks up a little bit.

     Several months ago, when this blog was merely an idea that I was kicking around with my husband, I weighed carefully the pros and cons of putting myself out there in such a manner. As my beloved was quick to point out, the intarwebz can be a nasty, soul-crushing black hole of a geek-run kingdom that has destroyed many a tougher soul than I. While I agree with this astute observation, it wasn't enough of a deterrent to make me not do this. I really felt then and feel even more strongly now that I need to share my experiences as the wife of a man with Marfan's Syndrome because someone somewhere has to feel the same way I do, or at least feel something similar.

     Right, so what's that little tangent have anything to do with the magically exciting e-mail that I got? The e-mail was from a woman on the other side of the world who is in a situation very similar to mine - the partner of a man born with Marfan's Syndrome. Obviously, to disclose any details other than that would be a breach of privacy and I would never intentionally betray someone's trust in such a manner. Suffice it to say, reading her words about her experiences reminded me of how much I'm not alone in this. Admittedly, it can be really easy to get caught up in the pity-party of "Oh, poor me! No one could possibly understand what it's like to be in my shoes! Poor, poor pitiful ME!"

     I generally detest that line of thinking, though, so I try to avoid it whenever possible and I think I do a pretty damn good job of it. At the same time, though, my reluctance to venture anywhere near Pityville has landed me more than once in a place that can be just as bad - I'm-the-strongest-person-in-the-world-and-I'm-fine-ville. It's a tricky line to walk, but finding lovely, lovely people like the woman who reached out to me make it easier, immeasurably so. I'm afraid that makes it sound like I don't appreciate the people in my life who empathize with me, but maybe can't sympathize. That's not at all the case, though, I assure you. I can't even begin to tell you how grateful I am for all the support that my husband I have on a daily basis with our family, friends and co-workers. Hearing from people like me is just...different.

     One of my weaknesses is getting too wrapped up in my own head and that can lead to a very isolationist pattern of thinking. It's self-absorbed and a little pompous, because no one in this wide world ever has a truly unique issue, but it happens to the best of us. Touching base with others like yourself is the best, and sometimes only, way to bring it back a step. It forces me to look around from time to time and really realize where I am. So thank you, girl from the other side of the world, for making me pause for a moment and pay attention to the fact that I'm not the only one who's dealing with this and never will be.

Saturday, August 6, 2011

In the Flesh

     I know that it can easily seem like most of what I do here is simply bitch about my husband's disability and the effect it has on our lives. While that's not entirely incorrect, it's not entirely correct, either. I'm well aware that fully half of my posts are less than cheery, but I would argue that venting about the day-to-day challenges that we're faced with is...kind of the whole point of the blog. It's an outlet for me, something I can use to get my thoughts in line when they'd much rather go every which way. That being said, I'm also hoping that those close to us (hi, family on the other side of the country!) use this as a way to keep tabs on what we're doing. It's hard enough living hundreds of miles away from your loved ones when they don't have serious medical issues; it sucks even more when they do. Here's hoping I'm able to bridge the distance somewhat.

     Yesterday was the fourth or fifth appointment my husband has had with the chiropractor and he learned something new and different about his back. As you may remember me saying in previous entries, my husband has a lot of hardware attached to his spine - titanium rods and screws and things of that nature. Thanks to the magic of x-rays, he knows approximately where each piece of metal is located in his body. For years, there's been a spot just below the skin that was so small and hard that he assumed it was the head of one of the screws holding the rods in place. What else would it be, right? Um, it was actually a muscle knot.

     It seems like such a small thing, not really even worth mentioning. But then I started thinking about it as if the situation were applied to me instead of him. (I do that a lot, to try and get perspective on a given situation and maybe understand my husband's reaction(s) a little better.) I can't imagine a having a part of back muscle so twisted up into itself that I mistook it for a titanium screw head. What must that feel like? Did it always make itself known, or only when he slept on that part of his back? Was it like The Princess and the Pea, always there and denying him a truly restful sleep? Could such a tiny thing make that much difference one way or another when dealing with a case like his, where the Marfan's has jacked up just about everything and so what effect could one tiny muscle knot have in the grand scheme?

     Times like these are when we pull out our "Time will tell" motto and wait to see what happens. I don't know that the doctor's discovery was anything very significant, but I've been wrong before. My husband seemed pretty amazed by what transpired, though he did remark on how much it hurt when the doctor was working it out. Apparently, it wasn't that painful before the chiropractor started working to break it up, but it burned like hell afterward. A good burn, though, one that lets you know you've accomplished something.

     I really want this doctor to keep making forward progress with my husband's back, as it seems to be going so well. Dr. Chiropractor told my husband that he's already finished loosening up one group of muscles and now they're working on the next set. I don't know what order they're going in or even how the muscle groups are divided up, but again, this seems like progress. Considering that I was ready to tear my hair out in frustration over the pain management issue just a few months ago, this is nothing short of a minor miracle to my way of thinking. If we can just for once keep the forward momentum going, it'll be a relief.

Friday, August 5, 2011

Communication Breakdown

     My husband's disorder can be such an all-encompassing thing sometimes. If I've said it once, I've said it a million times - there is no part of our lives that the Marfan's Syndrome does not affect. It influences what we do, what we don't do, what we might do and every damn thing in between. However hard I fight against it, I noticed that I've developed a tendency to overlook the immediate when trying to figure out what to do in the long term. By that, I don't mean that I necessarily ignore what's right in front of my face so much as I assign it lesser importance, something to be dealt with at a later date. And while this line of thinking is usually successful in tricking my head into thinking I've got more control of the situation than I actually do, it doesn't work so well for my husband.

     The thing is, I'm not what anyone would call a control freak. It's not like I have to know what's going on with every single part of my and my husband's lives at all times. I'm actually much bigger on taking things as they come and I believe that if one thing doesn't work out, then something after that will. I'll end up where I need/want to be and I while I may not know how I'm going to get there, I know with surety that I eventually will. I worry about getting my husband and I safely to that point, however. What if I make a decision that puts us in a worse spot than we are now? What if his health gets really bad, really fast? What then? Those are the types of big questions that keep me up at night.

     I had a conversation with my husband recently in which he told me that it really bothers him that I seem to ignore his concerns when they're on the level of things that I deem less important. Obviously, it's never been my intent to make him feel this way and I truly didn't think about what I was doing. In my head, trying to wrangle the larger problems, like how to get us set up so that he has the option to apply for SSDI if and (most likely) when it becomes necessary, was the best thing to do. I'm always trying to ease to burden of his disorder for him, because for so long, he didn't really have anyone to do that.

     Please don't misinterpret what I mean when I say he didn't have anyone to help take the load off - I don't mean that there was no one in his life that could/would help him out. The fact of the matter is, my husband spent most of his life living very much in-the-moment and not so much planning for the future. He didn't think about what his life would be like when the Marfan's really started wreaking havoc on his body and therefore didn't talk to anyone about it. How can you help someone when you don't know the amount of trouble they're in or, in this case, going to be in further on down the line? You can't, simple as that.

     And so, as I think about it, I realize that the problem here was really a communication breakdown on both sides. True, I was falling short in the area my husband most needed my support and reassurance - the immediate issues that pop up from time to time. Those are the ones that stress him out, the little trees that live on the edge of the forest. I think for him, the future is such a large, hazy idea with no defined edges that it's non-threatening and therefore isn't able to cause him stress. Since I'm the exact opposite, stressing out about the huge, looming uncertainty of our future, I never thought that maybe, just perhaps, he could be worried about something other than the things on my mind.

     When you're married to someone with a disorder like Marfan's, it's really easy to get wrapped up in everything you think you have to take care of in order to keep your lives running semi-smoothly. It's even easier to get stuck in the mindset of, "My God, I'm working overtime to get our affairs in order and keep them that way so that the next monkey wrench doesn't completely wreck us," so that you really believe you're doing all you can and them some to keep your husband happy. I mean, I'm researching new treatments, looking into what we have to do for SSDI, debating whether or not we should move closer to his parents, WHAT MORE DO YOU WANT FROM ME?!?! Except for, get off your high-horse, self!

     None of that justifies or even gives a good reason for completely missing this key piece of my husband's well-being. I have to pause sometimes and remember that while I get scared too, he's the one who's actually facing the doctors when they tell him there's really nothing more they can do. He's the one who has to sit on his hands and wait for things to break. It makes sense that it's the immediate that scares him the most, you know? He's always been someone who's thought in the right-now and why I didn't put two and two together before now is beyond me. I don't want to dwell on the why-didn't-I-see-the-problem part of it, though. I'd much prefer to take my new understanding of the situation and start working to make it better. Not sure how successful I'll be right off the bat, but here's hoping...