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!



Saturday, May 28, 2011

All Apologies

     Ugh, it happened again. Remember earlier this week when I was talking about my goal to eventually learn to channel the feelings of anger and frustration I feel when talking about certain aspects of my husband's Marfan's Syndrome? How I have these lofty aspirations of being able to turn the ugly feelings into something useful, productive even? Sooooo not there yet, as yesterday's entry can attest. While that post may have been true-ish to what I was feeling, it came out all wrong. That happens sometimes, I know, but when it does, I  like to follow it with something gentler, perhaps less frenzied-stream-of-consciousness.

     It's not an apology, per se, but I do feel that what I wrote has the potential to hurt peoples' feelings and I promise, that is the very last thing I want to do. I strive to be conscientious and thoughtful with everything I put out, but please remember that my writings are primarily for me. (Also for those in positions similar to mine who may stumble upon my little corner of the interwebs.) This is the best way I know to learn to deal with everything that comes with being married to someone with a degenerative genetic disorder and I'm lucky to have found only support and love along the way. I treasure that, more than I can really express, because I know how much harder he and I would struggle were it not for the constant that is the circle of friends and family we've been gifted with.

     That said, I have to reiterate the whole point of yesterday's post and that is that it can be really disheartening (See? disheartening = much less angry verbiage) sometimes when the first thing people think of when they think about my husband is his disorder. I wrote about how I whole-heartedly agreed with my husband's best friend Adam's approach to the situation. He only asks about my husband's health if we've had a major medical detour or if my husband brings it up first. This is not due to a lack of concern on Adam's part. Quite the contrary, he's very close to my husband and would, I believe, be very distraught should something really bad happen (i.e. an aortic tear, dissection, something of that magnitude.) I believe he does it that way because of his deep understanding of his friend and his compassion for him. What I was trying to point out in my previous post was that Adam's approach is, in my opinion, the best for my husband.

     It's just that all the well-meaning "How are you feeling?" questions get to him sometimes. He is not okay with the fact that he's broken and honestly, the unease is just getting worse as time goes on. He'll be thirty-eight this Friday, and though that's relatively young, he doesn't feel it. He feels much older, due to the way the disorder is breaking him down and he tries his damndest to forget the condition of his body most of the time. Like I've said, even though so many of those inquiries come from a place of genuine concern, they can really turn his day around, and not in a good way, when there are too many of them.

     That being said, I have to say that I always appreciate it when friends and family members ask me how he's doing. I like serving as a buffer in this situation, because I get the warm fuzziness of knowing how many people really care about him/us, but the Marfan's is not being shoved in his face, however unintentionally. It's a nice balance, I think. Also, if I'm really coming clean here, I would have to say that my husband is a little more self-sufficient in this area than I am. Truly, the one who can really make him feel better when we've had another visit to the ER is me. He's been dealing with this by himself for so long (and that was mostly by stubborn design, not because he didn't have people there who wanted to help) that he's used to it. I'm the one who, though perfectly capable of dealing with things by myself, likes the reassurance that there is a veritable army of people who have our back.

     The heart of the matter is that, I think. I deal much better with the constant inquires than my husband does, probably because we're on different sides of the same issue. I'm not the one that's broken; he is. My body does not betray me on a near-daily basis; his does. Therefore, we cannot possibly have matching viewpoints on the subject matter. What to me is a lovely reminder that someone cares is to him a needling reminder that all is not well within him. It's amazing sometimes, to realize how vastly different the places in which we find ourselves with regards to the Marfan's are. He the one who's afflicted, trying desperately to forget, to not think about it any more than he has to. Me the one who looks at all aspects of it, all the time, trying to figure out how best to approach it head-on while not letting it hijack our lives. It brings me no small amount of happiness that we can usually find a way to meet in the middle.

Friday, May 27, 2011

Sympathetic Noose

     The most interesting thing happened the other night. My husband and I were in our rec room, playing World of Warcraft, as we often do. (Hey, don't judge. Some couples go to the movies, some couples like to go digitally adventuring in the mythical land of Azeroth. We fall into the latter category.) He was in TeamSpeak (a software program that allows people to talk to each other over the Internet), chatting with his best friend, Adam, as he often does. They never really talk about anything of major importance, just day-to-day stuff, but since they live roughly fourteen hours away from each other, it's a great way for the two of them to stay in touch. Somehow or another, it came up that Adam was reading this blog and following along with my husband's many medical adventures. I knew he was, he'd mentioned it before, but it had never really been discussed at any length.

     It's important to remember that those two crazy kids have been friends for around twenty years and my husband considers Adam to be the closest thing he has to a brother. I know Adam knows and has known about the Marfan's, but I've not once heard them discuss it. Granted, whenever something like the squishing of the eye happens, he'll text my husband and ask how he's feeling, things of that nature. My husband will respond with a monosyllabic answer and then they're back to playing video games. I can't say I never thought much about this, because I turn just about everything over and over in my head until I've looked at it from all possible angles (whoo-hoo for being neurotic!), but it never stuck me as odd. It seemed very natural to the two of them, a pattern established long before I arrived on the scene.

     On this evening, however, Adam made a comment that caught my attention. (My computer sits on a desk right next to my husband's and I can hear everything that's said in TeamSpeak even when he's logged in and I'm not.) I don't know what prompted it, but Adam said that he usually doesn't ask too much about my husband's health issues because he doesn't want to make him think about it (presumably the Marfan's Syndrome) more than he already does and that he figured that if my husband needed to talk about something, he knew where to find him. Huh. When Adam said that, I was forced to admit to myself that his reason for looking at the situation the way he did was one that I, in all my turnings-over, had never considered.

     I had to stop for a moment and wonder if perhaps Adam was on the exact right path when it comes to dealing with my husband's disorder. Actually, I realized that his method of handling the Marfan's isn't that different from my own, when I really stopped to think about it. He knows it's there, that it can't be avoided and that it's as much a part of my husband as anything, but he also knows that it can't be the defining characteristic in my husband's life. I feel like so many people don't get that aspect of a chronic illness, that even though it's ever-present and can easily overshadow anything and everything else about a person, it's vital that you not allow it to. If that's the only thing you talk about, or even the first thing you ask about whenever you're playing catch-up, then the illness suddenly becomes this Blob-like thing that just engulfs everything in its path. Including the person who's trying desperately to remind everyone that there is a real live human being inside the sickness.

     So often, the first thing out of peoples' mouths when greeting my husband is, "How are you feeling?" Now, of course I'm talking about people who actually know us, not the random check-out girl at the grocery store. It's at first disheartening, then irritating, to realize that the Marfan's is the first thing that springs to mind for some, especially when the person in question is so very much more than a damn disorder. I know, "best of intentions" and all that, but come on, folks - does it always have to be about his latest brokenness?

     I'm of the opinion that Adam's approach to his friend's disorder is actually more compassionate than any other I've yet come across. Think about it - if you were sick with an incurable, degenerative disorder, would you want that ugly fact shoved in your face all the damn time? Doubtful. It happens so often, though, and people do it so thoughtlessly. More than that, though, they think they're doing the proper thing by asking after him every time there's an incident. And as soon as I wrote that sentence, I had to sigh at my own bitchiness of manner. I understand that, if we're strictly speaking of etiquette, the exact right thing to do is to ask after someone's health when next you meet. And maybe I am just overly sensitive to the questions because they're so much more loaded when they're directed at someone who's chronically ill. Argh. Do you see the mental tangles I'm dealing with here?

     Anyway, I think Adam's totally got the right idea here and it seems to suit my husband perfectly as well. I suspect that the reason he knew to take the tack that he has with my husband is because he knows him so well. I also suspect that it's because he views my husband the same way I do - a person who just happens to have Marfan's Syndrome, not a Marfan's Syndrome sufferer. There is a distinct difference between the two, as anyone in my or my husband's situation can attest. The straight sympathy, or worse, the pity, that some people have for my husband can be a smothering, strangling thing. Once again, I know that everyone has the best of intentions and their inquiries typically come from a place of genuine concern. Please know, though, that if I or my husband need to talk to someone about anything Marfan's-related, we each have people we can go to. We each have someone who gets it, who can make us feel okay again. We know where to go to find comfort that's not suffocating.



Wednesday, May 25, 2011

A Martyr for My Love for You

     You know how sometimes I write those posts that are kind of uncomfortable to read because they have the potential to make you think thoughts you really wish you weren't? This is going to be one of those posts. We got the news back from the eye doctor that the hole in my husband's eyeball has closed up and the pressure is good, though not quite back at normal levels. He didn't get an infection in the eyeball and the one that was on the eyeball is almost completely gone. These are all good things and believe me, I will be so damn glad when this ocular drama is done with. (In all likelihood, though, it's only a temporary reprieve. I'm sure he'll spring a leak somewhere else by month's end.) It was in the past few weeks, while all this was going on, that I realized something about myself that I was really not okay with.

     The thought doesn't live in my head all the time, or maybe it does and it's just very quiet; I don't know. The thing is, once in a very great while, there is a disgusting little voice that wonders when I'm going to get the reward that's due me for putting up with my husband's disorder and everything that comes with it. I KNOW! It's awful, I'm awful, horrible, not worthy of being married to him, and anything else you can think of to hurl at me. I'd rather you didn't, though, because nothing you can think of can possibly be worse that what I think of myself in those rare moments when that voice, that thought, breaks through and makes itself heard.

     I have to point out, though, the whole point of this blog is to hopefully provide a place where others like me can come to see that they're not alone. Maybe a dialogue will develop, maybe it won't, but I have to put my thoughts out there to be read because maybe even that, just seeing that someone else has had the same troubles/ugly thoughts that no one wants to acknowledge, will provide some sort of relief to someone in pain. If I have to be the one that takes the first step and bears the brunt of the beating because of it, so be it. I don't want anyone to wrestle with their thoughts about this stuff in supposed solitude the way I often have and that's why I've got strength enough to put this out there.

     Wow. Now that I've gotten the world's longest disclaimer out of the way, I can clarify exactly what the hell I'm talking about. I do a lot for my husband that most wives don't have to do for their spouses and by the time all's said and done, there will be many more items that I can check off the list of things I've done, but wish I didn't have to. I have to make a lot of decisions that most spouses don't, and we're not even into the hard stuff yet. My day-to-day is, as I've said multiple times, just a little bit harder than it should be because of my husband's illness and it's only going to get harder. I did not, however, choose this life. Some would argue with that statement, saying that I did choose it when I married my husband, that I knew what it was going to be when I said "yes" and I could've walked away. No, I couldn't have.

     I believe, one thousand percent, that my husband is the person I was put on this earth to be with. There is no one else for me and therefore I never had a choice in being with him or not. I tried to force fate's hand, go in another direction (I was married once before) and it ended badly. I'm not inclined to screw around with powers larger than myself again, so I followed whatever it was that led me to him and accepted what was. The love of my life came with a bonus prize, in the form of Marfan's Syndrome. (I know, I never got the toy I wanted in my Happy Meals, either.) I didn't care about it when we first started and I care less now, because I'm just so grateful to have him, but it's still a presence in our marriage that I can't ignore, obviously.

     So while I can be on-my-knees thankful that I got everything I ever wanted with him, I've discovered that I still have that despicable little voice that pops up out of the blue that thinks fate should've compensated me somehow for giving me a broken one. And yeah, I KNOW how ugly that sounds, but I doubt very seriously I am the first or only one to have such a thought. You know, when you think, "Well, couldn't you at least have helped me/him find a better job so we didn't struggle so hard financially?" Or, "Couldn't he at least have been from my home region, so I wasn't constantly trying to figure out how to get him back to North Carolina to visit his family and friends?" It's stuff like that, things that would make it not quite so hard. And no, I'm not entirely sure who the "you" I'm talking to is.

      As much guilt as my husband carries around for "burdening" me with his presence, I carry around equal amounts of self-doubt (and maybe a touch of self-loathing) for not being the perfectly supportive wife. I always think I could be doing it better, but the reality is that I'm doing the best I can . I have no map to go off of, not even someone to guide me, because who the hell do I know who's in the same position that I could talk to? No one, is the answer to that question.

     The nasty little martyr voice, the one that says, "I should get something for this," is a very human voice and since I have no intentions of abandoning my humanity at any point, it'll always be there. I guess what I really have to figure out how to do is not hate myself when it pipes up. As assured as I am of my humanity, I feel like I should be more than that when it comes to taking care of my husband. Unrealistic, damn-near impossible though that may be, I still can't shake that line of thinking. I'm trying, because it only gets me into trouble when I fail and subsequently lash out at my husband for my own failings. It's a vicious circle and one of my own making. Now accepting suggestions as to how to get out of it...

Saturday, May 21, 2011

Grace

     There are certain words that I've noticed pop up frequently in my writings on this blog and I've got mixed feelings about them. "Frustrated", "angry", "tired" - things of that nature seem to have a way of creeping into posts that I've no intention of putting them in. I don't censor myself when I write, but I do try to put the best (or worst, depending on how you look at it) of what's in my head out there. I want to be as honest as I can about how I feel about my husband having Marfan's Syndrome and the effect it has on our lives. This sometimes results in posts that are uncomfortable to read (see A Further Rumination on a Man's Ruination) and while I'm okay with that, because that's the reality of the situation sometimes, I'm not okay with the anger that I feel isn't properly channeled sometimes.

     I'll be the first one to tell you that those words I mentioned above have a place in my life and a very valid place at that. No one makes it out of here without their fair share of each of those emotions and more. I'm not trying to eradicate them from my writing or from my life at all; rather, I'm trying to take those emotions and not let them get the better of me, as is too often the case. It's safe to say that my marriage has an added amount of stress due to my husband's illness that most couples don't have to deal with. Never mind that I knew about it going in; it's a whole different ballgame knowing about it and living it.

     I feel like a lot of people in my or similar situations turn to their faith to help them deal and I guess I do that too, to some degree. I don't believe in the Bible or religion, but I do believe in God. It's a blind faith kind of thing, something that I've had to come around to in my own way and in my own time. I know He's there and we talk on a regular basis and that's that. (I really don't want to get too far into the religion issue, because no one is ever going to see eye-to-eye with the next guy and that's not why I'm here anyway.) I know there are a large amount of people who are fond of asking, "Why?" They want to know why this has happened to them/their loved one, how they could possibly be made to suffer so when God is supposed to love them, and on and on until they drive themselves half mad with questions they will never find the answers to.

     It doesn't matter why, in my opinion. If I spent all day on my knees, begging for an answer to that question, I'd likely go insane and waste the gift that is my marriage to my husband. I don't believe that's what God ever intended anyone to do. I know there are those who feel differently and that's fine; it's just not the way for me. Besides that, I believe that God had nothing to do with my husband's disorder. It was a genetic mutation, simple as that. God had bigger fish to fry on June 3, 1973 than to take time out of His day to tweak some random baby's genetics the wrong way.

     So while acceptance of what is has never been a problem for me, dealing with the accompanying emotions has. I have never once asked God why my husband is jacked up, nor why my perfect match couldn't just be normal with regards to his health. Instead, I've told Him how grateful I am that I found my husband, my heart. What I have asked is that He help me when I don't know what the hell to do for my husband and please understand, things have to be really bad before I resort to bugging Him. I and my husband can take of a lot of things on our own, but sometimes... It's just so much.

     When I do this, when I have my conversations with God (usually in my car, so if you see a girl in a Mazda sailing down the highway apparently talking to herself, don't worry, she's not crazy) I'm usually in a state of immense frustration and that's what I don't know how to handle gracefully. I want to get to a point where I can take those negative emotions and turn them into something else, something that doesn't make me feel restless and unnerved. I think the fact that I'm able to acknowledge that what I'm feeling isn't necessarily bad is the first step, as I have no intention of working to eradicate those emotions entirely. That would be both fruitless and a rather stupid endeavor.

     I also want to throw it out there that I'm not doing this in some quest to be a serene, Zen-like creature who's in control of her emotions at all times. I want to learn how to deal with my emotions with some amount of grace so that I don't feel so ugly inside sometimes. That's what it really is, you see. I HATE the frustration and the angry impotence and the nasty, twisting thoughts that go with it. Every so often, those nasty twists just take over my head and I want that to stop. I really feel I'm on the right path, albeit a very, very long path. That gracefulness I'm so wanting is at the end of it, I know, so I need to keep my head up and keep it moving. I have faith that I'll get there eventually.

Friday, May 20, 2011

Stuck in the Middle With You

     Today was the first time in two years my husband has seen the doctor who looks after his spine. I was the one who pushed him to go, since he doesn't like this particular doctor very much and therefore isn't overly enthused to make appointments with him. Added to the personal dislike is the fact that this doctor, who is actually a surgeon, is the one who referred my husband to the ineffective and difficult-to-get-ahold-of pain management doctor that he currently relies on to help him alleviate the near-constant pain in his back. This appointment was the result of me trying to find a starting point from which to begin charting a new path in pain management for him. It's thus far been nothing but frustrating and we've only just begun.

    I figured we had to start here because we needed to know where he stood, so to speak, with regards to the level of spinal deterioration that he's currently at. As I mentioned, it had been a solid two years since anyone had looked at his spine, so we both figured he was due. It seemed like things had gotten worse in the past eight months or so, and my husband was musing about the possibility of another spinal fusion. He's known for awhile that it's somewhere on the agenda in the future and it seemed like the time might have come.

     On the one hand, a major surgery like that would suck phenomenally, for a multitude of reasons. At the most practical level, it would require a fair chunk of time to be taken off work and that's time he simply doesn't have. Even if I were allowed to transfer all my sick days and all my vacation days, it wouldn't be enough. That would leave us in that pesky no-paycheck area, which is just unpleasant all the way around. Then there's the emotional weight to consider; the knowing that my husband was laying on a cold steel table in some operating room, laid open like a damn science project while they add to the hardware he's already sporting, is something I don't like to dwell on. It's not like I'll go to pieces or anything (not my style at all), but it's just something that doesn't sit comfortably within my brain.

     The other side of the argument is that if we can just go ahead and get it over and done with, things would improve significantly for my husband in the long run. Once the initial recovery period was over and he's mobile again, I really believe the number of days that he finds himself incapacitated due to back pain would be significantly reduced. As someone who has a tendency to not be able to see the trees for the forest (meaning I miss the immediate details sometimes due to being so focused on the BIG PICTURE), I kind of want this to happen sooner rather than later. I know it would be awful to see him suffer through that surgery and recovery period, but I could stomach it much easier knowing that he won't be hurting so much during normal life.

     However, there will be no scalpels in the near future for my partner in crime. The doctor ordered a full-body x-ray today (which my husband thoroughly enjoyed, geek that he is) and, upon viewing it, opined that there really wasn't a significant change in the condition of my husband's spine, certainly not enough to warrant another fusion. Instead, he talked with my husband about more pain management (I'm really getting sick of that phrase...) My husband was at least able to voice his concern with that plan, namely that while the pain management doctor was very nice, she wasn't exactly ideal to deal with the Marfan's Syndrome stuff.

     She's really hard to get into, for one, and that just doesn't work for someone in his situation. My husband needs someone who is more accessible than she usually is, due to the nature of his disorder. Added to that is the fact that the plan of action up until now has been to simply give him more muscle relaxers (they don't work), and you see why there's an issue. The surgeon listened to what my husband had to say and said that he'd talk to the pain management doctor's office about the uniqueness of the situation and see what could be done to improve it. So it appears that, once again, my husband and I are to simply wait and see what happens.

     I've noticed that I use the word "frustration" in all its forms quite often in when I write and while some may think it redundant, I would argue that I can't emphasize that emotion enough. My husband and I are so often stuck in the in-between, that place of non-action. It's no one's fault, particularly, because that's just the nature of Marfan's. No one, including the experts, know exactly what it's going to do or how fast it's going to do it. It makes it hard to combat and, I imagine, hard to treat from the doctor's perspective. I want to bang my head against the wall sometimes because I just don't know what else to do for my husband. He's still in pain, there still aren't any answers, I'm still angry at the doctors for not having those answers and I'm still infuriated by my own uselessness. That anger is futile, though, and gets us absolutely nowhere. (That's what the good voice in my head tells me, anyway. The bad one just laughs and gleefully stokes the fires of frustration.)

     And so we'll wait and see how bad it gets, and hope like hell that we're not stuck here too much longer, waiting...

Thursday, May 19, 2011

I Wanna Hold Your Hand

    My husband and I were in the drugstore the other day, waiting on yet another prescription to be filled, when I noticed people were staring at him. That in itself isn't unusual; because of his height and his prominent features, (thanks again, Marfan's) he usually gets looks wherever we go. His long hair, earring and go-away-before-I-eat-your-children-for-breakfast expression don't help matters, either. We're used to it, though, or as used to it as one can ever be. I don't suppose anyone ever really gets comfortable with being viewed as a leftover from the sideshow freak days, but he deals with it. (And I know that phrasing may sound unnecessarily harsh, but I promise you, it isn't. There is nothing that isn't harsh about the blatant disregard for proper etiquette that my husband encounters just about everywhere.) I try to help him with this whenever I can.

     That said, it was worse than usual this most recent time due to the fact that my husband is still wearing an eye patch. I swear, that stupid little two-dollar piece of fabric and elastic is like a freaking beacon that screams, "Hey! Look at me! I'm over here!" Not exactly what the best thing when you already stand out in the crowd and are less than happy about it. True, he's joked about the patch and how he's enjoying his new-found pirateness since the day he got it, but that's just because he's so used to using humor to mask what's really going on. The truth of the matter is that the patch makes him even more self-conscience than he usually is and he'll be glad when it's gone.

     I don't normally notice people looking at us when we're out, not like he does. I'm sure that's because I haven't been dealing with it my whole life and therefore am not nearly as sensitive to it as my husband. Hell, even if I do catch someone looking my way, I automatically assume they're interested in whatever's around me, never actually me. I pick up on it sometimes, but again, it doesn't ever bother me the way it does him. This time, though, in the drugstore? Much different. I saw people actually stop their conversations in mid-sentence to turn their heads and watch us walk towards them. It was disgusting.

     I don't think I've ever felt as protective of anything ever as I did of my husband in that moment. The way those people openly gaped at him was just ridiculous and it broke my heart as I looked up at him and saw that he'd locked his gaze straight ahead, as if to block them out completely. We're not an overly touchy-feely couple, certainly not one who stays locked at the hip in public, but I clamped my hand onto his so hard I felt my knuckles pop. In that moment, I wanted those jackasses to know, without a doubt, that my husband was loved, was wanted, that he belonged with someone. I wanted to show them that he was mine and I was proud as hell about that fact.

     I've never felt like that before, not once in all the time we've been together and all the outings we've taken. I can't imagine what it must've felt like for my husband, to be gawked at not because of something stupidly self-inflicted, like a facial tattoo or rainbow hair, but because of something that he had no control over. I know it's happened a thousand times before and I can't figure out why this incident is affecting me so much. Have I really been that blind to it before now, or just simply dismissive? Maybe it just never felt like that big a deal to me before; I don't know. I know it's firmly under my skin now, though, and there it will stay lodged until I figure out how to get my head around it.


 

Wednesday, May 18, 2011

Done All Wrong

     I handled that badly. And by "that", I mean the last little go-around we had with my husband's health. It wasn't anything super-serious this time (as always, relatively speaking), and I knew that. At this point in the game, I can distinguish pretty easily between something that's cause for alarm and something that's just going to disrupt our normal routine. Eye issues with him generally fall into the latter category and when I was awakened at six in the morning, a full two hours before I needed to get up and get ready for work, I wasn't sympathetic, I wasn't concerned for his well-being; I was just flat-out annoyed.

     I know I've mentioned feeling that way before, but only in passing and that was partly out of not knowing whether or not it was something I wanted to delve into and partly out of fear. I was/am afraid of what people would/will think of me for admitting that I'm rather a selfish creature sometimes. True, everyone is selfish to some degree, even the very best of us, but what I'm talking about it here is not the I-ate-the-last-of-ice-cream-and-I-don't-care variety. I'm talking about the fact that last Wednesday, when my husband, the one person in the world who inspires me to love more fiercely than I ever thought possible, told me that his eye hurt badly and he was seeing spots, the first thing I could think was, "I don't care! I'm sleeping!" Awful, no?

     Yes and no.

      Yes - I'm the person who should be right there, always, whenever my husband has any kind of medical issue. As the spouse of someone who has Marfan's Syndrome, I know my role. I knew going into this marriage what was going to be required of me, what he was going to need from me (though he rarely asks for it) and in that moment, I failed. Theoretically, I knew it was bound to happen sooner or later. I knew there was going to come a time when I wasn't going to be able to muster up the proper response to one of his happenings because my first concern was going to be for myself. It's an ugly thing to know, but that doesn't make it any less true. It also doesn't help that I believe everyone has the same capacity to fail in such a way, because everyone else is not me - I'm better than that. Does that sound exceptionally vain? Yeah, but that's the truth of what was in my head. That my love for my husband was so strong, so unique, so much more than anyone else's love for their partner, I would be the exception.

     From our wedding vows - "Know in your hearts that the two of you together are greater than any challenge ahead. Marriage is its own reward. If you find yourself adrift, or afraid, look to these bands and know the hands that hold you." Neither my husband nor I wrote that; our wedding officiant, my husband's best friend of God-knows-how-long, did. I love it, though, and I think it was perfectly fitting for us. I hate that it's an ideal I'm still struggling to live up to, because I want to just be that good a person and partner, right out of the gate. This latest episode with my husband's health is a perfect example that I'm not just that good, despite sometimes being able to convince myself that I am. (My powers of persuasion are great, especially when I'm using them on myself.) When I let all this run around in my head, then I can only come to the conclusion that yes, it was awful of me to have not jumped up out of bed and attended to my ailing husband with nary a thought for myself. On the other hand, though...

     No - Also from our wedding vows - "Marriage is a vow to share your lives with each other, without losing your individuality." That is my favorite sentence from our wedding vows, because it phrases perfectly what I've always believed to be the most important part of marriage. I've had a problem with the whole "two become one" line of thinking ever since I fully realized what it was, because I'm a ridiculously independent person. (And by "ridiculously", I mean borderline-obnoxiously. Only sometimes, though.) I am very much my own person and I like who I am. I have no intention of losing any part of myself in an effort to create a harmonious relationship, nor did I ever have any intention of doing so. And though I know some would view the Marfan's as a game-changer and say that I should give special consideration to my husband and his needs because of it, I disagree whole-heartedly.

     I know, better than anyone, that because of my husband's disorder I'm going to have to make some adjustments to my thinking, to the way I approach things. That DOES NOT mean that I should shove myself to the side to accomplish that goal. I have needs too, I'm just as important as he and his disorder are and dammit, I will not, will NOT let it change everything. If my husband had woken me up two hours early for any other reason, I would've been just as annoyed and no one would've blamed me for it. More importantly, I wouldn't have blamed me for it.

     And that, gentle readers, (always wanted to say that!) is where I've figured out the heart of the matter lies. I'm harder on myself than anyone else could ever be when it comes to my various reactions to my husband's various medical adventures. The vast majority of the time, I am the first one (often the only one) to pack him in the car and sit with him in the ER while they poke and prod and ultimately do nothing of consequence. I'm the one that takes care of him on a daily basis, tries to make his life as comfortable and content as possible. I'm going to make a misstep every now and again because sometimes, I'm just tired. I'm tired of the emotional wringer that I get put through every time something happens, tired of the hospital, tired of the financial burden that comes with being chronically ill, tired of the added stress.

     I can't add to it, though, by tearing myself down for not being Mother Teresa about every incident, every time. I'm a strong person, but I'm not that damn strong, not yet. More accurately, I'm a good person, but I'm not that good, not yet. I can't push myself to the side every time he needs me, not yet, though I like to believe that I will get there. I'm actively working in that direction, because it's something I want to be for him. (There's so much I want to be for him that I lose track sometimes. Sigh.) I'm finding the balance between losing myself in him and selflessness when needed, I think, or at least I've recognized that that's what's needed.  So while I may have done the wrong thing last week, handled it badly, it's just another bump in the road. The next bump will no doubt be smaller, if I have anything to say about it.

Friday, May 13, 2011

There Once Was a Pirate

     My husband has turned into a pirate. No, really. He already had the long hair, the beard and the earring, so essentially all that was needed was an eye patch. Luckily, he just got one of those. Okay, but seriously, Halloween has not come early to our household; my husband jacked up his eye. Again. You'll remember our earlier ocular adventures, which I chronicled in March's entries. It's that same eye again, just with a different, slightly more disgusting issue. I'm sure you're probably asking yourself what could possibly be more disgusting that someone literally bleeding from his eyeball and the answer to that is someone whose 10-year-old ocular incision opened up a tiny bit and allowed all the fluid within the eyeball to be accidentally squished out while he slept. Say it with me now - EWWWWWWW!

     My husband woke up Wednesday with an intense pain in his right eye and noticed that he was now seeing red spots. Never a good sign, but like I've said before, when you're dealing with something like Marfan's Syndrome and have grown accustomed to never quite feeling one hundred percent, you don't rush to the hospital for every little thing. He and I both figured that an immediate call to the doctor's office wasn't necessarily warranted, so my husband instead decided to wait a day and see what happened. If the pain increased or if he started experiencing a loss of vision altogether, then he'd call the doctor. It's a game he's quite used to playing.

     Then day's end rolled around and while it hadn't gotten worse, his eye hadn't gotten any better either. I looked at it and it was reddish and irritated, but I'd seen worse. It didn't look nearly as bad as it does when he blows a blood vessel in his eye and I told him so. He went to bed that evening still in pain and when he woke up on Thursday, it was just as bad. He finally called the doctor and told them what was going on and was given instructions to get his ass to the office immediately if not sooner.

     He first saw his regular eye doctor, who took a look and said it appeared that there was a tiny hole in the old incision, which apparently is common enough. According to the doctor, eyes don't heal the same way skin does and therefore any incisions that are made into the eyeball itself are prone to opening back up, just the tiniest bit. Most times, these holes close themselves and no harm done, but of course it couldn't be that simple for my husband. He was sent to a second doctor, a specialist, who confirmed that there was indeed a hole and the source of all the pain was the fact that there wasn't really any fluid left in the eyeball because my husband had inadvertently SQUISHED IT OUT WHILE HE SLEPT!!! (Sorry, I'm not easily squicked out, but that one required caps lock.)

     The doctor figured my husband must have pushed his face into the pillow as he slept and it was just the right angle at just the right amount of pressure to cause the fluid to be pushed out. That's why he was in so much pain, because the pressure in his eye was so low they couldn't even get a reading. The doctor commented that she was surprised that my husband had waited so long to come in, but if you know the situation, you know why he waited. It's just the way it is around here. Oh, and the other loveliness that comes with a leaky eye? You're very susceptible to infections within the eyeball (he had one on the outside, but it hadn't migrated by the time the doctor looked at him). Combine that with Coumadin use and you're setting yourself up for a retinal bleed, which usually leads to irreparable damage and loss of vision. Son of a ...

     So for the time being, I have a pirate for a husband, complete with eye patch. He's enjoying said eye patch entirely too much, I think, as he's already spent a significant portion of his workday replacing his normal vocabulary with, "Yar, matey!" and the like. The pain has lessened greatly, what with the cream that he applies six times a day and the eye drops that he adds every two hours and the painkillers he's on, so that's good. Really, this is just something minor in the Adventures with Marfan's Syndrome and it could've been much worse. I'm glad he did see the doctor when he did, so we don't have to add partial blindness to the list of ailments. There's enough going on with his health already that we really don't need to bring anything else to the table just yet.

   

Tuesday, May 10, 2011

Say Anything

     You know how when a friend steps out of the house in a less-than-cute ensemble, you're really hesitant to say anything, because that's just not nice? At the same time, if that same friend instead steps out wearing something super-cute, it doesn't take two seconds for the praises to start flowing from your mouth. I found myself feeling like that theoretical friend the other day when I realized that while I usually get one or two comments whenever I post something happy or encouraging that's happened, I never hear anything from anyone when I post something that's not so great. Actually, that's not entirely true - I don't hear anything back when I post something that contains ugly thoughts. I have my theories as to why that is.

     Everyone wants to share in joys, and most people want to be there for you when bad things happen. My husband takes a trip to the hospital? That usually warrants a comment or two from supportive friends letting me know that they're there for me, whatever is needed. That's an amazing feeling when that happens, because it's something like tangible love. (God, how rom-com was that phrasing?) Nevertheless, it's true. It never fails to move something in my stodgy little soul when I see those words of encouragement. The sharing of the joys is a no-brainer because who doesn't love a parade? People are always ready to share the happy and that's wonderful as well, since it always seems like happiness gets even brighter when there are more people to take part in it.

     What I'm curious about (and please know that it's just curiosity - there are no accusations here) is why no one ever comments/offers advice when I post something like A Further Rumination on a Man's Ruination. I don't believe it's because there's a lack of interest or that the subject matter is unrelatable. On the contrary, I'm beginning to think that the silence is because maybe people see too clearly how and why I have those ugly thoughts from time to time. Maybe they recognize something in a phrase or a sentence that they themselves have thought with regards to my husband's disorder. Maybe it hits a little too close to home once in awhile and they just don't want to deal with whatever's been stirred up.

     I think that's possible and I also think it's very understandable. Hell, I'm the one who has the thoughts and most times, I wish I didn't have to deal with them either. I see it almost every time I have to talk to someone new about my husband's Marfan's Syndrome - they just kind of stand there for a bit, not quite sure what to say. Most of that is due to simple ignorance, meaning that they just don't know what it is or what to say about it. That's also totally understandable. I can't help but wish, though, that every so often someone would read something I write and maybe throw their two cents in. I don't even care if it comes anonymously, as I'm sure it's much easier that way. I actually still use anonymity to some degree on this blog (notice how I've never mentioned my husband's name?), because it allows me some measure of disconnect to what I'm writing about.


     I suppose that what I'm hoping will eventually happen is that an open dialogue will be sparked by something I've written, so that maybe someone else can benefit from my observations. That's the ultimate goal here. There's another part of me (and I really, really hate to admit this, because I HATE asking for help in any shape, way, or form) that's hoping that someone somewhere will read an entry about whatever issue I and/or my husband is wrestling with and see some piece of it that I don't. Maybe they'll offer some insight and that will be the missing link that makes everything fall into place. Maybe what I'm trying to say is that I just realized that one of the reasons I went public with this is because I'm having a difficult time doing this on my own. I need to be able to view things through others' eyes, hear things my stubbornness often blocks out. The thing is, though, I can't do it alone.

Monday, May 9, 2011

It's Getting Better

     I'm ecstatic that I cut the grass yesterday while my husband used our brand-new weed eater to trim all around the house and along the sidewalks. I'm elated that we spent about an hour outside in the heat on our day off getting bitten by ants (me) and hit in the forehead with flying debris (him). Do you get what I'm trying to say here? I'm all kinds of happy that we were able to do a routine household chore that required a reasonable amount of physical exertion and he's no worse the wear for it today. It seems like such a small thing to most, but when you consider that the last time he tried to cut the grass it resulted in a two-day unpaid absence from work, you can understand why I'll happily chalk this up to a small victory.

     I'm beginning to see that it's all a balancing act, everything we do. While it's true that my husband does have more physical limitations than the average person, I know now that if I put my clever-little-hobbit hat on, I can almost always find a workaround or compromise. (And that's not to imply that my husband won't or can't, but having lived with it for far longer than I, it's sometimes hard to see that there could be another way when you've been defeated so many times before. I, on the other hand, still have that annoyingly shiny optimism about me.) Last night was a perfect example. The grass needed to be cut, but my husband didn't want me to do it because he feels like that's his job to take care of. Sweet though that sentiment is, it's decidedly less sweet when his paycheck is way short because he had to call in due to being in too much pain as a result of his latest manly endeavor. So what's the answer here? Give husband the weed eater, which weighs much less than the lawnmower and is thus safer for his body, and let wife use the lawnmower. Besides, I'm terrified of cutting off a toe or something, so I won't touch the stupid weed eater.

      It worked beautifully, our new plan. The yard got taken care of, my husband was not in pain and he still kept his pride intact. No doubt, it's kind of an annoyance to try and reconfigure what should be mindless tasks, but hey, we do what we have to do to keep some semblance of harmony in our little world. I feel like the idea of having to make things just a little more complicated than they should be would probably bug my husband if he stopped to think about it, so my job is to not make it obvious as to what's going on. If I can just put a little extra thought into the everyday, maybe I can make the Marfan Syndrome that much more manageable for both of us.

     If I work at it, I know I can get to the point where I'm not actively thinking about how to adjust whatever task we're trying to complete to allow for his limitations. I also know that if I can get that far, to make it so that I'm not actively thinking about what I'm doing, I can make it so he doesn't think about it, either. That's the ultimate goal, I think. I want to be able to help him manage his disorder so that it's not so damn intrusive all the time. It's already the third person in our marriage, the elephant in the room, and I'd like to kill said elephant as soon as I can figure out how.

     I'm gaining traction now in my journey to create the best life possible for the both of us, I know I am. Every so often, when I have a tiny breakthrough like I did last night, I can feel the wheels in my head catch and dig in.  I LOVE that feeling! (Trust me, it beats the hell out of the times when those wheels are just spinning for days and days without gaining any ground whatsoever.) I need that feeling to stay with me so that I can use it to help me during the times when I can't see any light in the tunnel. I need to remember that even though his condition is deteriorating, it IS getting better for us in the broader scheme of things. I just have to remind myself periodically that if anyone can out-clever this fricking disorder's potential effect on our lives, it's me.

Thursday, May 5, 2011

Bring It Back Gentle

     I know my last post seemed kind of harsh and almost rant-like (at least, it reads that way to me), but it was totally necessary. When faced with the enormity of something like Marfan's Syndrome, there's bound to be some level of anger, of bitterness, of frustration. I'm sure that with time, I will learn to manage the levels of each more effectively than I do now, but that's further on down the road. For the time being, my husband and I are both struggling to learn to deal with the ugly emotions that can accompany such disorders as his. Obviously, we are on different sides of the Marfan's fence with this - he the one who suffers from it, I the one who has to watch him suffer.

     I try to emphasize, as much as I can without sugarcoating the situation, that our lives are in no way, shape or form intolerable. My husband and I have a good life in many aspects, not the least of which is our marriage itself. My relationship is one that I never actively hoped to have, because I didn't think it existed in real life. To have found the one person who's so perfectly matched to me is something I still can't quite believe really happened and I love him so much, it's ridiculous. Right, saccharine sappy part over now, I promise.

     It's really important to me to the people understand that while I started this blog with the primary goal of helping others who are married to people with Marfan Syndrome, there are other reasons I do this. I've discovered that these writings are an excellent way to keep the other people in our lives informed of what's going on with my husband's health, primarily my in-laws and my husband's circle of friends back in North Carolina.

     I've gotten pretty positive responses from people thus far, and that's all kinds of encouraging. I'm sure there will come a time when someone isn't going to like what I write and I'm okay with that. I took on that risk when I made the decision to make my feelings on this matter public, instead of keeping them confined to the little journal I carry around in my purse.

     I wasn't thinking of this blog as a way of helping myself when I started, but I guess it's becoming that, too. I just wanted to create someplace people like me could go and vent their feelings, or read an entry and know they're not alone in what they're experiencing. As I've said before, if I can help even one person who's in a similar situation, I count that as a success.

     I see now, though, that I've also potentially found a way to become a better partner to my husband. Maybe I'll eventually hear from someone who's also married to a Marfan's kid and they'll help me to work through the ugliness that I don't know what to do with sometimes.

     Until that happens, though, I'm going to keep using this as an outlet when things get really bad or really scary. It's not something I can really discuss with my friends, as none of them are in the same situation and it's hard to fully explain unless you've dealt with it to some degree. So I'll keep going here to purge myself of whatever it is that I don't want in my head and hope that someone out there will connect with it.

     Maybe we can help each other, maybe we can't. Maybe I'll never get anything back from the people who look at my words (and I know there are a lot of you - I can see how many page views I get each day.) Whatever happens, I do feel confident that I will eventually learn to handle my emotions surrounding the Marfan Syndrome in a healthier way. Eventually, I'll learn how to keep them from taking over my head.

Tuesday, May 3, 2011

A Further Rumination on a Man's Ruination

     I read over what I posted yesterday and while I'm not completely pleased with it, because I think it's my most disjointed post yet and that's not what I ultimately want to put out there, I have to leave it. A friend of mine who read it said to me that it's my most honest post, because it sounds so words-to-paper, if you will. I realized that that was very true; I had to get something out, but there was so much that I just couldn't get my thoughts into any semblance of order. I know me, and I know that when that happens, I have to get at least a little bit of it out before I can begin to make sense of it and quiet my head. So please, allow me to explain myself.

     My husband was born with a degenerative genetic disorder called Marfan Syndrome and it affects everything we do and everything we don't do. It's going to break him down slowly and painfully and the process has already begun. Hell, the process began the day he was born, but that's not so unusual. Everyone begins their decomposition (pardon my morbidity) in some way or another, on the day they enter this world.

     I'm not talking about the standard issues that come with the natural aging process; I'm talking about the unique issues my husband faces on a daily basis. I'm talking about the extreme head trip that comes with knowing you're defective right out of the box, the multitude of specialists and drugs it takes to keep you alive, the fear that you're never going to be able to measure up as a husband due to something that no one had any control over. That's what I see him deal with every day.

      The comment my husband made to me the other day, which was something to the effect of, "I wish I could've just lost a leg or something, over and done with. This slowly breaking down shit is for the birds," speaks volumes to me about how he views his disorder. Obviously, I'm not quoting him verbatim, but you see the point he's trying to make. And, as I said last night, I look at the situation as six of one or a half dozen of another...mostly.

     While not to discredit the emotional trauma a sudden amputee (or someone similar) experiences, I can understand why my husband feels it's more difficult to live the way he has to. The only thing I can use to try and understand what that must feel like is the death of my uncle, my father's brother.

     It was cancer that killed him and it was long and drawn-out and really, really ugly. By the end of if, I couldn't help but wish that he'd just go to sleep, so he could get some peace. Oh, and the part of that thought that no one ever wants to talk about? That would be the part that says, "I hope he can get some peace, because I need some, too." It's kind of like that for me.

     This is what springs to mind when I attempt to understand the difference between living with a chronic disease and an acute one. I may have had time to adjust to and accept the fact that I was going to lose my uncle instead of just waking up one day and finding him gone, but ultimately, I think it was worse to watch as he suffered.

     Keep in mind, I've only known my husband for a few years and by the time we really started becoming close, he was already well into the Marfan's and all its lovely surprises. I've never know him as a (relatively) healthy person . His sister, his parents, his best friend, his co-workers at the record store in North Carolina where he used to work - they all know him in a way I do not.

     His family and his best friend have all known him since before he knew he had Marfan's Syndrome and though he knew he had it by the time he was working in the record store, it wasn't anywhere near as bad as it is now. They know him as an (again, relatively speaking) healthy person who had to take a few pauses for surgery here and there. I can't imagine how painful it must be for them to remember him as he was and have to look at how he is now, seeing the effect this damn disorder has had on him.  What's even more painful for me to try and understand is that my husband remembers himself in a way I do not.

     I believe that the crux of the matter is that my husband remembers all too well what it was like to live without the chronic pain, without the daily meds, without the never-ending ER visits and every once in awhile, it's so damn painful to face what life is now. I'm going to qualify that statement by saying that neither of our lives are anything near intolerable now. On the contrary, most days are happy and content and we even have our fair share of brilliant-rainbow-cuddly-puppy days.

     As I've said before, it's not all gloom and doom and poor, poor pitiful me, but this is a side of illnesses like his that few are willing to discuss. I for one HAVE to discuss it, or I may not be able to cope with all that's going on well enough to still be a good partner to him. My husband is essentially saying a very long goodbye to the "healthy" period of his life and that's something I can't even pretend to know how to help him with.

Monday, May 2, 2011

Man's Ruin Preach

     You know the old analogy of ripping off a Band-Aid, how it's better to just get it over and done with than try to do it slowly and perhaps less painfully? My husband used it this weekend when he tried to explain to me how he felt about the whole breaking down thing. It's something he's apparently been giving a lot of thought to recently, as his condition continues to deteriorate. (For those of you that use this blog as a way to keep tabs on him and his health, don't take that to mean anything major has happened that I'm not telling you. I just mean that he's already taken twelve sick/vacation days and it's only the first of May. You can draw your own conclusions.) While he's always known that with Marfan's Syndrome, it's more of a slow decline than anything acute, it kind of came to a head this weekend, while he was working his second job waiting tables.

     He always works a double on Saturdays and there are usually at least two other servers who are pulling doubles as well. However, my husband is the only one who waits tables as a second job; everyone else there is counting on their tips to pay the rent. While it's true that we need his extra income to get by, we do not rely on it to pay our bills; our day jobs cover that and then some. The people at the pub where he works know a little about his disorder and try to take it into consideration when it's time to start cutting people for the night. This past week was a bad one for us, since he had to take two days off work due to the pain in his back and when the boss found out, he let my husband know that he would try to cut him first when the time came. My husband really, really hates when that happens.

     He hates feeling like he can't pull his own weight at work, especially when he knows the others are already on their third double in a row and he's only there one day a week. I reminded him that it's not as if he's sitting around eating bon-bons the rest of the week - he does have a full-time gig. I may as well have been talking to a wall for all the effect it had on him. He made the comment, "It wouldn't be so bad if it were something like losing a leg, just over and done with, but this breaking down bit by bit has got to go." That struck me as a really interesting comment for him to make and not just because I don't agree with it.

     I know that I'm not in the same position as him, but after all, this blog is about me and how I deal with being married to someone with Marfan Syndrome. I look at it his disorder as compared to someone who falls victim to some sudden, horrible accident as six of one or a half-dozen of the other, as I think each has their own unique set of issues. Losing mobility suddenly is life-altering in a harsh way - one day you're skipping around all nimbly-bimbly and the next you can't feel your toes because you were in an horrific car accident. People don't always survive that kind of game-changer and though I'd think my husband would be appreciative of the chance that things might get better for him heath-wise (I know, snowball's chance in hell, but I can always hope), I'm not the one who has to deal with a body that used to be okay, but isn't anymore.

     I can't imagine what it would be like to remember when I was a teenager or in my twenties and know that, while the issues were still there, they weren't at the point where they can't be ignored. My husband tells me about the things he used do with his friends and to know that he can't ever do it again? I can't even begin to comprehend. As most people get older, they look back on youthful adventures and shake their heads at their own brazenness, because while it may not have been the best idea, damned if it wasn't fun. He doesn't get that option, to think that he could do now what he could do then if he really wanted to and it, like so many other things, damn near breaks my heart when I think about it.

     He thinks about it a lot, does my husband. He thinks about what life used to be like and what it is now. In a lot of ways, it's much better now, mostly due to the fact that we found each other and now there's someone who can really take care of him. (That's only because I make him let me, though. He's so damn hardheaded that he'd try to take a cab to the hospital before he'd pick up the phone to call a friend or family member to take him.) In some ways, though, I can't help but wonder if he wishes for what used to be, when he didn't have to call into work four times a month and feel like a broken old man at the ripe old age of thirty-seven. I guess in some ways, a slow decline is worse than something happening suddenly. He's got a lot of time to dwell on what was and what's coming and what's coming is likely not pretty.