Friday, December 30, 2011

A Day in the Life

     The entryway to the hospital where my husband always goes for treatment is really spectacular at night. You have to take an escalator up from the bottom level of the parking garage to get there and though I've traveled those moving stairs more times than I care to count, it never fails to make me feel like I'm being pushed into the prettiest night sky I've ever seen. It's a huge glass walkway that's crisscrossed with strips of  white lights. They're LED lights, I think, so they're not just white, they're white, like the purest form of illumination you've ever seen. In all the times I've been there, I've never seen a single burnt-out bulb or socket without a bulb in it. I suspect they've employed someone whose only job is to maintain the walkway's luminescence.

     I think those lights have a similar effect on the other people who traverse that walkway, because it feels like conversations stop once you're under the lights. It's something calming and beautiful in the oddest of places and perhaps that's what the architect intended when he or she decided to make it anything but the typical sterile hallway that so many hospitals are fond of. A place to gather yourself before walking into the unknown of a loved one in the hospital, somewhere to soothe yourself before driving home alone after a tense, emotional day of listening to a never-ending stream of medical jargon. Or maybe that's just my take on it.

     The escalator that takes you up into the walkway is actually really narrow, only wide enough for one person. It's an odd feature in a place where the support and comfort that comes from human contact is so very essential, but it's not as though you spend more than sixty seconds at a time in that place. I tend to focus on the small, inhuman details when I'm at the hospital because it keeps my mind from wandering. If I don't concentrate on the placement of the coffee kiosk, I might find myself wondering if the crying woman who just passed me in the lobby has lost her husband, or if the thin, disheveled man wandering around with an IV tower is on yet another unsuccessful round of chemo. I'm a naturally empathic person on my best day, so at times when I've got my guard down, whatever sad story I attach to these strangers can be my undoing.

     There's really no time for coming undone, so the best thing is to keep moving towards the bank of elevators in the center of the lobby. It can be tricky, dodging all the people who are there to visit their sick friends and family members, but I'm getting pretty good at it. I'm even getting to the point where I can tell the difference between the first-timers who are only here for a quick visit and don't expect to have to return anytime soon, and the ones who are familiar with the territory. As someone who's more familiar, I move differently than the others, with a surety that makes it clear I know where I'm going, I've done this before. I see others move that way and I know that this isn't their first trip, either.

     One nice thing about my husband's trips to the hospital? He always gets a private room because he had a staph infection years ago and now there's a big, fat MRSA stamped somewhere on his chart, meaning he never gets a roommate. This means I can stay with him as long as I like, observing the nurse take his vitals every couple of hours and watching the Food Network on the little TV attached to the wall next to his bed. It's actually really peaceful after all the other visitors have gone home for the night. The nurses offer me a blanket and to roll another bed into the room if I want to spend the night. Once I did, because he was in there on my birthday and I wanted to wake up with him that morning. Last night, though, I went home.

      It's a very different experience, leaving the hospital in the early hours of the morning, than it is coming in during the early evening. There is no one in the elevator and it doesn't stop to pick up any other passengers on its way down from the eleventh floor. When you step out, there's nothing to hear but really terrible Muzak. I mean, REALLY terrible music, even worse than the hold music you have to listen to when you call the front desk find out someone's room number. There aren't even any janitors vacuuming or sweeping in the hallways. There are a couple of stragglers that usually make their way through the lobby to the parking garage, walking, I assume, I like me. That is to say, tiredly, because they've been there too long and they know they'll be coming back too soon.

     There are security guards at the front desk at this time of night, instead of the jacketed concierge who direct you to where you need to be. The fountain in the center of the lobby is still running, only instead of being background noise, like it was earlier, it's harsh and grating. The water spews out of the center of the pool before crashing back down and it's an ugly sound, especially when everything else is so quiet. The wonderfully-lit walkway that leads back to the parking garage is the one thing that doesn't feel creepily somber at this late hour. It's even better than it was before.

     When you're the only one walking it, you can look up at the lights and the sky that shows through the triangles of glass as you walk, since there's no one to accidentally bump into or give you strange looks. It's so incredibly quiet, too, like your footfalls aren't even making a sound. I know they're not being completely absorbed by the industrial gray carpet, so I don't know how it's possible. It happens, though, I promise. You can pause to look out at the street that runs in front of the hospital, usually one of the busiest in the city of St. Louis, and see that there's no one and the lights have all gone to flash. That's comforting, too, in a way, because then you can just think about the day that was and not have to pay too much attention to fighting for position in traffic.

     The drive home is pleasant, since the highway is virtually empty. In St. Louis, we tend to drive however the hell we want, so it's almost always an adventure to get from A to B. In the very early morning, though, it's a totally different story. With no one to compete with for lane space, you can just drive and it's calming, relaxing even. By the time I pulled off the highway onto the ramp that leads home, I had almost convinced myself that this night was no different than any other. Just another late night at work; he'd be down in the basement, playing on the computer, waiting for me. He wasn't, of course, and that reality was brought home by walking into the totally darkened house, so clearly uninhabited by any non-feline life.

     Fed the cats, who are actually quite poor company when you're feeling blue, in case you were wondering. They're moody, aloof little beasts who could really care less about anything other than that the food in the bowl is at an unacceptable level. The bedroom was too large and cold without him and the bed itself completely unappealing, so onto the couch with a couple of blankets. It's not nearly as comfortable as the bed, but at least I might be able to sleep for a couple of hours if I leave the TV on for company. Waking up every forty-five minutes or so because your body knows instinctively that something's not right is one of the least fun things ever. It knew there was supposed to be a warm husband there next to it, not a tiny, furry creature that yowled irritably every time it was disturbed. It knew that things wouldn't be right until he was home again.

    

Wednesday, December 28, 2011

I've Got a Feeling I'm Falling

     To be more accurate, my husband was the one doing the falling and there wasn't really a feeling that preceded it; he just went down. It happened last Monday, as he was getting out of bed to turn the alarm clock off. Since he leaves for work before I do, I was still soundly asleep when something happened and he went crashing to the bedroom floor, shaking the house and waking me up in a most unpleasant fashion. I came up from the bed immediately and I knew instinctively that the loud thud had been my husband's two hundred-pound frame hitting the floor. That probably shouldn't have been my first instinct and the fact that it was speaks volumes to what it's like living with something like Marfan's Syndrome. I guess it was just lodged in the back of my brain somewhere that this was going to happen sooner or later.

     He wasn't really moving or making noise when I jumped out of bed, though to be fair, I didn't have my contacts in and I'm all kinds of blind without them. Again, I guess it was instinctual, but even as I knelt down next to his curled-up form on the floor, I wasn't ever afraid that the dreaded aortic aneurysm had let go; I knew it had to have something to do with his back. I didn't touch him as he lay there, but I asked him what happened, what hurt. He couldn't really respond with details, mostly because he didn't know. He managed to convey to me that he needed to go to the hospital, so I quickly got up and made the standard preparations, i.e. send an e-mail to his boss letting him know that he'd be making a trip to the emergency room instead of to work.

     I got up and got ready for work, since I had to be there in a couple of hours and I intended to hold to our standard operating procedure, which is to drop him off at the ER, see that he's settled and then go on to work. I was almost ready to go and my husband still hadn't been able to make it up off the floor where he lay in front of my dresser. I couldn't get him up by myself and he'd been down there for about thirty minutes at this point, so I told him that if we couldn't get him up in the next ten minutes, I was going to have to call an ambulance. If there's something he hates more than calling attention to his disorder, I don't know what it is and the thought of being hauled away in an ambulance was apparently worse than the pain he was in, because he dug in and, with my assistance, made his way off the floor and onto the bed.

     I dressed him, put his socks on, tied his shoes. I didn't look at his face while I was doing this, because I knew how much it pained him, both physically and emotionally, for me to have to do the most basic of tasks for him. He hates it, absolutely detests it, that his disorder can, at times, render him helpless to some degree. He's such an independent soul, almost to the point of his own detriment, and as someone who's very similar in that regard, I have to do everything I can to respect that about him and ease the frustration when things like this happen. I'm usually not successful in easing his frustration, but that's going to be a lifelong battle and one that I can only hope to win piece by piece.

     My husband had to use his crutches to get to the car, which is something new for us. He's used his cane before, or put his hand on my shoulder for support while he's walking, but this time he could barely move, even with the extra support from the crutches. As I stood behind him, watching him make his slow, painful way down the hall to the kitchen door, I couldn't stop the bad thoughts from flooding my brain, unwelcome though they were. It struck me so hard in that moment how bad this could potentially get, that his semi-immobility has every possibility of becoming a daily occurrence and neither of us is even remotely prepared for that.

     The actual hospital visit was relatively uneventful, except that my husband asked me if I could go get a wheelchair for him, as he couldn't walk into the building under his own power. That's also a new one for us, as he's always been able to at least walk as far as from the car to the emergency room, but it wasn't a surprising request, given the events of the morning. The nice security guard at the front desk went and got a wheelchair for me and came out to the car to get my husband and take him in while I parked. I stayed only long enough to see his vitals taken and make sure he was as comfortable as he could be in the waiting room before I had to leave for work. I always hate leaving him there, but the practical side of me knows that there's nothing else to do. Once he's taken back to the room, he's immediately drugged anyway and doesn't know if I'm there with him or not.

     As it turns out, the dural ectasia is responsible for this latest ER visit. Truthfully, I've read about dural ectasia, what it is and what it does, until it felt like my eyes were ready to bleed and I still don't completely understand what the hell's going on. What it essentially boils down to is, the dural ectasia kicked in, caused my husband to have a head rush of epic proportions and he semi-blacked out/lost all sense of balance and control and went down hard. That's why he didn't catch himself when he started to fall - he couldn't, because he didn't know he was falling. I had something like that happen to me when I was thirteen and to this day, I'm afraid of it happening again, even though it was a freak thing and the odds of recurrence are slim to none. I don't know what it would be like to know that the loss of control could happen at any moment, anywhere.

     I want to end this post with something lighter, smart-assed, even. What I want and what is are two different things, though, as can be the case. I can't be light about this, however much I want to, because it was a significant occurrence for my husband and I. All the little discrepancies, the ways that this time was unlike all the others, can't be discounted for what they are. Now, what they are, I can't say with surety. They could be markers of what's to come, indicating that the degenerative nature of his disorder is really picking up steam. They could be nothing, the flukes that happen because the human body never reacts in exactly the same way twice. Or they could be indications that my husband's second spinal fusion isn't so far off on the horizon, which is my favored theory.

      It wasn't exactly light, but damned if there wasn't hope there. I'll settle for hopeful.

Tuesday, December 27, 2011

All I Want for Christmas Is You

     You all know how excited I get when someone contacts me out of the blue because they've come upon my blog somehow or another. It's one of the reasons I started writing this thing in the first place, so that I could possibly connect with other partners who are on my side of the disorder that is Marfan's Syndrome. It's lonely and hard at times, not feeling like you have anyone to talk to who really gets what you're saying and is instead just making sympathetic noises. That's not to say that the friends and family I do discuss my husband's disorder-related adventures with are giving me lip service, because I don't believe for a minute that they are. My loved ones absolutely empathize with whatever it is I'm upset about in that moment. The key word, though is empathize, not sympathize, and the difference between the two can be profound.

      As much as I could never put a price on how much I value my circle of friends and family who help take care of me and my husband when it comes to dealing with his medical issues, I'm going to be extremely selfish for a moment and admit that I want more. Do I deserve it? Probably not, as no one is entitled to anything in this life and I'm already far and away better off than so many, just by virtue of being born in a first-world country. Political overtones aside, I feel I'm especially greedy in this wish considering that I've been blessed with so damn many people that I can open up to anytime I want. And I do mean anytime - I've had conversations with friends at 2 a.m. when I'm too bugged to sleep and they've always answered the cell phone for me. I doubt very seriously if that will ever change.

     What more could a girl want, right? A very specific type of sounding board in human form, as it turns out. As my husband's health declines and his disorder progresses, I find us both in increasingly uncharted waters and damned if I have the first clue how to navigate them. I question myself constantly when it comes to any decisions that I make about how to handle his various issues and he questions himself just as frequently. Each of us is not only trying to make the best decision for ourselves as an individual, but also as one half of a couple. It complicates and already-messy situation to levels that neither of us has any experience in dealing with and frankly, neither of us is at all sure of our footing.

     I really, really want someone who's in the same situation to tell me I'm doing a good job, that I'm helping my husband make the right choices and that I'm not completely screwing us both. There are so many facets of a chronic, debilitating disorder like Marfan's Syndrome and I swear we get presented with a new one every other month. There are physical aspects of it, emotional, mental, legal. There are issues I never in a thousand years would've guessed that I would be facing in my life and now they're a pervasive presence in my marriage and in my life as a whole. I'd like to think that I'm doing somewhat better than fumbling through, but I can't be sure and thus far, I've yet to find anyone who can reassure me otherwise.

      That's probably a bit elitist of me, actually, that line of thinking. After all, empathy counts for just as much, if not more sometimes, than sympathy does in a scenario like mine, doesn't it? I used to think so, but now I'm not so sure. Having lived this for the past two years and having a pretty damn good idea of what's coming up around the bend, I have to say that I'm at a point in my life where I need someone who can say they've been where I've been, exactly. I need someone who has seen/is seeing life through the same lens that I do on a daily basis and tell me that what I'm seeing isn't warped. I need someone to tell me that yeah, they've been there exactly and it's either going to get better once we get past this point or, alternatively, it's going to get rockier still and I need to batten down the hatches if I hope to weather the storm.

     Like a few of my other posts, I hesitate for awhile before pulling the trigger on actually posting this, because I know there's such potential for hurt feelings and that's the last thing I want. I eventually came to the conclusion, though, that those who are closest to me know me well enough to know that my words in no way mean they're not enough. They know how much they're loved and needed and that's exactly why they're the people in my life who are most important, because they know what they are to me. I'm also a firm believer that no one can be everything to someone and so you need a full cast of characters to fulfill all the roles in your life.

     I love my husband more than anything, but he's not my best friend. We're friends, yes, but there are things I don't go to him with, that he'll never understand. Likewise, there are times in his life when no one but Adam can really understand what's going on in his head. It's the same principle at work here, when I say that I need to find other Marfan's spouses to talk to. I'm a pretty articulate person even on my worst days, but this is like nothing I've ever experienced and there are some aspects that I just can't discuss yet, even though the words are there. Actually, that's only semi-true; I can discuss them, I just don't know with whom. To find that person would be such a relief, for both me and my husband.




Wednesday, December 21, 2011

How Many More Times

     About a week ago, my husband and I were getting ready to go to bed and just before I turned off the lamp next to my side of the bed, he suddenly tensed up and gasped. I turned my head to see him rigid and bowed up towards the ceiling, breathing through his clenched teeth. While that pose could easily be interpreted by some as, "Oh no! I'm suddenly possessed by a demon!" a la The Exorcism of Emily Rose, I knew that it meant he was in the throes of a sudden muscle spasm. Sure enough, when I asked him what was going on, he said that his back was cramping up violently. After a few minutes, it started to let go of him, just a bit, and he was able to resume normal breathing. He tried to relax into the mattress, but I could still sense something was off.

     He continued to shift around a bit, trying to get comfortable, but it wasn't going to happen. Apparently, there was a particularly bad knot in his back muscle that was making him feel as though he were laying on a baseball. I couldn't imagine that felt very nice at all, so I suggested a Flexoril to help relieve the pain and maybe allow him to get some sleep. I know that it's a weak-ass suggestion, but that and hot showers are typically all I have to work with. We don't keep anything stronger than ibuprofen in the house and nothing short of Dilaudid in an IV would've touched it anyway, had he been in serious pain. Clearly this wasn't hospital-worthy, so he took his muscle relaxer, I turned off the light and we both went to sleep.

     The next morning, I was awakened much earlier than I wanted to be, especially given that it was my day off. If my husband's making enough noise to wake me up, I know it means one thing - he's in serious pain and considering calling in to work. Even though he's not in danger of losing his job over missed days due to his disorder, I still wish things weren't this way. I was brought up to believe that you only called in to work when there was absolutely no way you could be a functional human being that day and for most of us, those days are few and far between. I'm still learning that, for my husband, those days are far more frequent and far more debilitating than I'd like to think.

     The other side of that argument, though, is the "Push through it" mentality, with which I'm very familiar. It was that line of thinking that I employed when I said to him in the early-morning darkness, "Please don't say what I think you're going to say, not again." I know how cold that sounds to some, how unsympathetic, but just hear me out on this one. The reason I said what I did and encouraged my husband to get up and get in the shower with the water as hot as he could stand it is because I really believed it would be to his benefit. I have to believe that there are still methods available to him that he can use to feel okay and go on about his business in as normal a manner possible. For God's sake, he's only thirty-eight and this cannot be happening with this level of frequency. Can it?

     Maybe it can, that's the real hell of it. My husband has moved into the past-his-prime period of his life, which is not all that off-schedule from a normal person, when you think about it. I would guess that forty is about the age where people really start to feel their living, though I don't personally believe that marker should by any means be seen as the beginning of the end. It's just that, statistically speaking, forty is roughly the halfway point of the average person's lifespan. So when I look at it in that light, it doesn't seem so bad that he's beginning to have more bad days than good. Actually, that's not true - it feels just as bad and the mental acrobatics I'm pulling to make it seem okay are rather unsuccessful. I keep circling back to the fact that he's only thirty-eight and these days are coming faster and harder.

     That's why I pushed my husband to get up and get going that morning, because I believe these mornings can't all be I-can't-get-out-of-bed mornings. Sometimes I have my doubts about doing this, since I obviously can't know how badly he hurts, nor what his true limits of pain tolerance are. In that respect, I have to trust that he will tell me when he truly can't do it, as was the case this past Monday. (That was a whole new adventure that I'm sure I'll write about soon.) I also have to rely on him to know when he's really at his limit versus just being tired and achy. Basically, there's a whole lot of trust going on here in levels most couples don't ever have to touch. It's also entirely possible that I'm overthinking this whole issue, because I tend to overthink things like it's my job.