Sunday, October 30, 2011

Your Sickness Weighs a Ton

     It does weigh a ton and though I've said it eight thousand times before, I have to say it again. My husband's Marfan's Syndrome is currently pushing down on our household like never before. There are so many things going on right now, so many, and even though I feel like I have a pretty good grip on everything, I know that it could be loosened at any moment. Normally, that's not me; I'm not the half of the marital duo who's fatalistic and looking at everything through a warped, cloudy lens. Right now, though, I can't seem to do anything but. I can't see what it is that we're coming up on, I don't know how it's all going to play out and I've lately been living in a perpetual state of waiting for the other punch to land. Most of the time, I can take it, but right now I've got the worst feeling that even though I can probably hold my ground, my husband's not going to be able to.

     As always, it's not any one thing in particular that's caused my world to tilt on its axis, but rather a culmination of small things. My husband had to quit his second job waiting tables on the weekend because it was just too problematic. Thus far, it's been both a curse and a blessing and we'll just have to see which one wins out in the end. One the one hand, he now has two full days off every week to recover from working his regular job.

     It's too soon to tell yet if having a real weekend will pay off at his full time gig in terms of not having to call in as frequently, but that's the hope. Obviously, I'm not a doctor and neither is my husband and so we're not equipped to make the call of whether or not this move will be beneficial on that front. Thankfully, that means we'll get to play my favorite game of all time -Wait and See! It's this awesome game where no one's able to tell either of us anything about how a decision my husband has made regarding his health is going to turn out or even if it will be the tiniest bit beneficial, so we just get to WAIT AND SEE! What are we waiting for? Who the hell knows? It could be something great, it could be something that leaves us in a worse place than before, or it could be nothing at all. Doesn't that sound like the most fun you've ever had in your LIFE?!?!

     Sorry, I drink a lot of Mountain Dew and sometimes it gets the better of me. Anyway, the point I was trying to get across is that while we hope my husband not working as a server will result in him experiencing less days full of crippling pain, we don't know if it will or not because the second job may not have had that much effect on the state of his health anyway. The other side of this debate is the fact that his second job pulled in a not-insignificant part of our monthly income. I've readjusted our budget as best I can, but the fact remains - ouch. It's not like we were using that money to buy pretty things to hang on the walls, either. We've still got two months in the year to go and my husband and I have already spent almost two thousand dollars in healthcare costs for him.

     Two thousand, and we're lucky enough to both be employed full time and have insurance. It's good insurance, too, but there are co-pays for doctor's visits and co-pays for medicine and a large out-of-pocket chunk of change for things like eye surgery. It adds up really fast and doesn't even factor in what we've had to spend on my healthcare. Luckily, I'm not often sick and only require trips to the doctor for yearly check-ups and such, so that's something we've got going for us. Still, I worry what might happen if a sudden large expense comes up when we're so not financially ready to deal with it. The income from his second job eased that worry just a little and made him feel better about being sick. (That's a whole post in and of itself, trust me. Maybe even multiple posts.) I'm hopeful that ultimately, my mad budgeting skillz will get us through and the theoretical benefits to his health will manifest themselves and make the extra anxiety worth it.

     My goal in the meantime is to see how much of this heaviness I can get lifted off the house. I can see it affecting him more deeply than me and I'm sure that's because the disorder is his, not mine. As much as it affects my life, I will never be forced to look at it in the mirror the way my husband is. I attribute part of the weight to the fact that lately, it's seemed like the Marfan's is progressing faster, consuming more of his body than it has before, affecting it and breaking it in ways that my husband has never experienced. It's scary enough for me to watch; I'm horrified to think what it must be like to wear that every damn day and know that you'll never get away from it.

     Perhaps this is just a rough patch, as we've been through before and as we'll weather again. Maybe this patch is stronger, more vicious in its grip than has been previously experienced and that's why it's having the effect that it is. I don't know. Maybe my husband and I are both making too much of nothing we can put our collective finger on and need to stop letting it occupy space in our brains. That's what I usually tell myself when this feeling becomes so pervasive - "Hey! Stop moping around, get your head right and keep moving forward." I think I'm going to have to take that same stance now, because the truth is, there is just too much coming up down the road for me to give in at this point in the game.

Friday, October 21, 2011

The Denial Twist

     I find my thoughts often veering off into places that they never would were it not for the fact that my husband was born with Marfan's Syndrome. Being a somewhat rare disorder, it follows that living with it would cause somewhat oddball thoughts by both partners, my husband and myself. Most of the time, those places are interesting little sojourns of the "Huh. What if?" variety and they don't bother me. In fact, I'm usually pretty grateful for them, as they allow me to contemplate scenarios that I never otherwise would have. I like trying to figure out unique problems and coming up with answers that no one else has thought of. It's often the same for my husband, as he's just an odd person on the whole and so enjoys strange mind trips to where-the-hell-ever. Once in awhile, though, my husband surprises me with something out of the blue, something that I never in a million years would have considered.

     I don't even remember how the topic came up, to be honest with you. We were sitting downstairs in the rec room, each at our computer, just rambling back and forth about how our respective days had unfolded. I think it was a Saturday, meaning that my husband was home from waiting tables at his second job and therefore in considerable discomfort. That seems to be the most likely scenario, because the conversation turned into a discussion about his disorder and we typically leave the Marfan's out of it whenever we can, unless there's a direct segue. How we got to that point in the conversation doesn't matter, because what I remember is my husband turning to me and saying, "You know, every once in awhile I purposely make myself not hug or touch you, just to see if I can do it, because what if one day I won't be able to touch you?"

     I still don't know why he chose to disclose this tidbit to me; the only thing I can think of is that is was just too heavy for him and he needed me know know so that I could share the weight. At first, I thought he meant that he was afraid his condition would deteriorate so much that he wouldn't be able to make the physical movements to hug me. That seemed overly dire to me, because while he's likely going to end up in a wheelchair with limited mobility, I can't imagine him being so bad that he can't lift his arms to hug me or hold me. I could be wrong, because the truth of the matter is that we have no idea how this is going to progress and where he'll end up physically. I really don't think it'll get that far, though, despite the level of severity of his particular brand of Marfan's.

      When I mentioned that to him, that I didn't think he'd get quite that bad and hey, I could always just sit on his lap while we wheeled around wherever, he shook his head and said that's not what he'd meant. Apparently, every so often, my husband tries to trick himself into believing he's not sick, that the possibility of an aortic aneurysm letting go isn't lurking just behind the door. One of the ways he tries to accomplish this is by acting "normal", or what he sees as normal. To him, it's not normal to fear that each day could be your last, or at least your last good one, the last one when you can walk into the house after a long day at work and hold your wife in the kitchen for a bit. It's normal to not feel a desperation to convey to your wife just how much you love her, because you may not have all the time you'd want to get the message across.

      I was momentarily rendered speechless (no easy feat, let me tell you) by what my husband said to me. I had never once considered that he felt like that. I mean, let's be honest here - Marfan's Syndrome is a degenerative genetic disorder and while nasty, it's not exactly Stage IV cancer, you know? I suppose I just never thought that it would have quite that much of an affect on his thoughts of mortality. That was rather stupid on my part, because how could it not? Knowing that your cardiovascular system is jacked and has been since the day you were born can only become a monster of an issue in the back of your mind after thirty-eight years of it living there.

     My husband told me about all this weeks ago and I still don't know what to do with it. Do I tell him to carry on as he has been, since that's what he seems to need to be able to feel okay? Do I reassure him that it's okay to touch me and hug me as much as he wants and it doesn't mean he's not "normal"? Obviously, people who are perfectly healthy can be very aware of their own mortality and choose to live each day as if they may not be given another. I personally believe that's a very exclusive club, because few of us are that self-aware, but they're out there. I just don't know. For the time being, I'm going to let it lie, mostly because I have no idea what else to do with it. I hate when that happens.



Wednesday, October 19, 2011

Long Time Gone

     Has it really been almost a month since I posted anything? God, this first semester of being in school while working full time must really have taken more out of me than I suspected it would. So much for Supergirl, eh? That's not a dig at myself, though I know it sounds like one. I actually think I did quite well this first time out, considering I haven't so much as set foot on campus in four years and my sudden re-enrollment wasn't the result of some grand plan, but rather a wild hair I got one day. As glad as I was to be there, I will admit that time-management was a bit more stressful a concept than it was in my days of working part-time. The fact that I knew there was no way my husband and I were going to make it through a full eight weeks without some kind of Marfan's incident was also adding to the weight.

      I'm someone who really, REALLY likes to be right, but I could've accepted defeat with my prediction of not getting through the semester without at least one trip to the emergency room. For whatever it's worth, my husband got very close to the end of the eight weeks without incident, but during the last week of September, his back muscles did their evil little routine of twisting and knotting so that he can't move and I had to drop him off at the ER on my way to work. This is normally not problematic, as I just pick him up when he's done and take him home. This time, though, I was faced with a rather unpleasant choice - should I leave my freshly de-hospitalized husband alone all night while I sat in class or should I tell my professor what was going on and hope for mercy?

     I should take a moment to explain the way my classes are set up, because it's a little different than the traditional sixteen-week format. My classes are once a week for eight weeks, four hours a night. That means I often don't get home until close to ten o'clock in the evening and that's a long damn time to be away from someone who couldn't move only twelve hours before. On the other hand, because my classes are on such an abbreviated timetable, I can't afford to miss even one class because of the potential detriment to my grade. It's really important, on a lot of levels, that I finish up what I started with my undergrad degree, so both my husband and I felt trapped yet again between a rock and a hard place by this new problem.

     I doubt very seriously my husband ever thought about how his Marfan's Syndrome could potentially affect my schooling, because his brain just doesn't work that way. Part of it is that he's more of a focus-on-the-trees-not-the-forest kind of person, while I sometimes can't see the trees for the forest. Part of it, though, is the fact that he's still got a stubborn bit of denial hanging on regarding the fact that he's sick. It's something he liked to pretend wasn't there for the vast majority (and by "vast majority", I mean before I came on the scene) of his life and it's not an easy transition to make, from refusing to acknowledge your genetic disorder to actively confronting and managing it. I sometimes don't know how he's been able to make as much progress as he has.

     In any case, I figured the best thing to do in this case was to e-mail my professor and explain that my husband was disabled and had been in the hospital that day and so it was possible that I may not make it to class that night. I figured it was important to be completely honest with her and let her know that my husband is disabled, as there are certain rights and protections for disabled persons which also, in some cases, extend to the protection of the spouse as well. (Know your rights, can't stress this enough.) I'm not one hundred percent sure how that would've worked in this case, but as it turned out, I didn't have to find out.

     I got him home and situated, which basically just means that I got him tucked into bed with a large amount of muscle relaxers and painkillers, with his cane nearby should he need to use it. He had his cell phone and I had mine, so I went ahead to class, though not before I called my parents and sister and let them know what had happened. I just feel better when there are more people than just me watching their cell phone for a call from him, just in case I miss it. He knew as well as I did how important it was that I not miss class and more, he was well aware of the larger implications should this incident lead to a less-than-successful semester.

     It all falls to what we said a long time ago, before we decided to get married, and that was that we were not going to let his Marfan's take over our lives. I have to say, holding to that is becoming harder with each passing month since it's a degenerative disorder. We and the doctors manage it as best we can, but remember in my last post when I told about the ER doctor who said to my husband, "I don't know what else to do," in reference to his pain? We're hitting that wall more and more frequently, it seems. How do you not let something like that permeate everything, dictate every move? I feel we're doing a good-enough job of it at best and that's not quite enough for either my husband or I. I'm afraid, though, that we may have to learn to accept it as enough, because that's the best we're going to get.