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.


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