Sunday, February 23, 2014

Stand By Me

     I don't have nights like last night very often, but when I do, they hit with a brutality that's unmatched to anything else I've ever experienced. My husband's been hospitalized again; he's been there since Friday night because after he went to the ER with pain shooting from his back to his legs, they did a CT of his spine and the doctor on call was unable to be sure of what she was seeing because it was so fucked. A specialist was called, who was only able to look at the films quickly before being called away on an emergency, but whatever she saw was enough to order my husband's immediate admittance.

     I'm just tired. I don't even want to get into the details of what's wrong this time, because it doesn't really matter. Cyst(s) in his spinal column, unknown how many or how we're going to deal with them. He's been put on a heparin drip because the decision was made to do a myelogram, which is a type of CT scan that involves injecting a dye into the spinal column. This isn't a simple thing for people on blood thinners, because you don't really want blood seeping into the spinal fluid from the puncture, which is what's likely to happen when your blood is 2-3 times thinner than it should be. I'm getting ahead of myself, though.

     Last summer, when my husband was in and out of the hospital for all but like, 8 days of the month of July, a cyst was found incidentally during a routine CT for back pain. Even though the ER doctor wasn't able to tell us exactly what it was at that point, we had a pretty good idea. There are these things called Tarlov cysts, which are nasty little fuckers and which I am not going to try and explain. Google it, if you care to find out more about them. The short version is, they're nerve-filled cysts that form in the spinal column and are a bitch to deal with because touching them can cause them to rupture. Also there's no known effective treatment for them because no one's quite figured out why they form, so there's that.

     Sigh. Looks like I'm getting into the details anyway.

     My husband's still in the hospital and it was yesterday that the neurologist came in to discuss the myelogram with him. It's a necessary thing, he said, because they can't tell from a regular CT how many cysts they're dealing with, or if it's even multiple cysts; could just be one big one. Well, my husband's had one of these procedures done before and he knew it involved a lumbar puncture. Last time he agreed to one of those, he ended up having a mini-stroke as a result of going off his blood thinners, which is what he had to do to minimize the possibility of blood seeping into the spinal column via the puncture site.

      When he brought this to the neuro's attention, the doctor told him that he understood his concerns, but there was really no other choice; it was a risk we'd have to take. See, the other option for discerning what the hell was happening in my husband's lower spine was an MRI, which isn't actually an option at all, due to all the metal in his body. Three titanium rods and a titanium aortic valve kind of do bad things to the images, plus my husband is convinced the MRI machine will dislodge his valve, irrational as that is. (Pretty sure it's an impossibility, actually.) So suck it up, buttercup, 'cause here we go.

      According to the all-knowing Google, it was Winston Churchill who said, "If you're going through hell, keep going." Smart guy, Mr. Churchill, if it was indeed he who uttered those words. I'm actually pretty good at keeping up a brisk pace on my way through trying situations, because I think it's stupid to do otherwise. I mean, you can lay down and cry about it, but you'll still be in hell when the tears are gone and no closer to getting out than you were when you started. So why wouldn't you march the hell on? Except I guess it's not always possible to keep it moving without assistance.

     As much as I hate to admit it, I lost it last night; the weight of everything that's happening and everything that's already there threatened to break my shoulders and I couldn't see. I just couldn't see anything in front of me, and everything that was clawing at my throat erupted into full-on, broken-hearted, lost in the dark with no hope crying. I actually started this post last night, but couldn't get anything to make sense, so I had to walk away. I didn't know who to call, because I would have alarmed my husband had I called him while I was in such a state and it would have been made worse by the fact that he couldn't get to me, being hospital-bound and all. I hesitated to do it, because my pride usually keeps me from talking to anyone when things go completely sideways like that, but I ended up calling my sister.

     I shouldn't have hesitated, because she was the exact right person to call. I mean, she's my sister. Lizzie's head is the closest thing to my own and she knew exactly the right tone, exactly the right balance of sympathy and "You're a Gale, we do not fail, we make game plans and execute them" to employ. It's nice, when you don't have the words and they're not needed anyway, because the other person just knows, even from seven hundred miles away.

     So we game-planned, and we talked, and at the end, I was calm enough to make a bed on the couch and fall asleep with the tv on. It wasn't a good sleep, as it never is when my husband's not with me, but it was better than nothing. No solid conclusions were come to, but at least I was able to get my brain to remember that it's not hopeless and there's always a way. Miles and miles and miles to go before I can rest, yeah, but I'm not traveling by myself, and that's not nothing.



Saturday, February 15, 2014

Shout Me Out

     Anyway. Now that I've gotten that out of my system, let's get back to something a bit more relevant to what this blog is supposed to be about. Speaking of the blog (like that not-at-all-subtle segue?), one of the main reasons I started it was because I couldn't find any sort of support online or in person for people like me. Meaning, there were multiple support groups for my husband, the one who was born with Marfan's Syndrome, but very few for me, the one who was not, but lives with it just the same. And honestly, of the support groups we did find for him, none of them proved to be what he needed because it's apparently some unspoken rule that the ugly sides of chronic, debilitating disorders are not for talking about among polite company. I was unaware.

     I know how harsh that summation sounds and I don't mean it in a harsh manner, not at all. It's really meant to be a statement of opinion, nothing more. Sometimes, though, I just can't find a way to turn what I hear in my head into words and this is one of those times. It's a frustration for me, both the dissatisfaction with what's available and my own inability to properly articulate what it is I/we need. Everybody's looking for something different, something that works for them. If that something fits within the confines of a traditional, emphasize-the-positive group, more power to you. Comfort's an elusive creature and if you can find it, hold on like hell, as best you can for as long as you can. I'm simply saying that those types of set ups don't work for me and I'm not the only one.

     And actually, I don't really think it's even the tone of such groups that clashes with my personality to the point of genuine discomfort - I think it may be the idea of a group, period. I'm not really a group-oriented person by nature, though I'm not what anyone would consider a loner, either. Let's put it this way - I would much rather be left alone to read my latest literary acquisition that spend an evening at a party where I only know the host and a handful of others. I'm either a one-on-one kind of girl, or a lecture-hall attendee, because I have no middle ground when it comes to my personal preferences.

     I think that's why this outlet works so well for me right now, because I get both types of interactions with one medium. Here I sit at my sunny little computer desk, with Queens of the Stone Age raging in my ears, talking to myself and a hundred others all at once. It works as an outlet for me, a forum for others who know this story to talk to me and performs a myriad of other functions that I just haven't thought of yet. Sometimes people notice, as when one of the bigger Marfan organizations somehow tripped over this blog and re-tweeted the link to one of my posts. Such a tiny thing, especially when taken in the context of the billions of tweets that go out daily, but that doesn't lessen its significance to me. As I've so often said before, if it's just one person that gets something, anything, from what I'm rambling on about, then it's worth it.

       I still hold out hope that somewhere out there are enough like-minded individuals that we'll be able to form a kind of network, one that we can rely on to share the load that I personally am so reluctant to share. I am, at the moment, still so reluctant to share the weight of things related to my husband's disorder because I never know how to get the conversation started and somehow seem to stumble along gracelessly if I do manage to open that door. I hate it, intensely, because words are the one thing that I've always found comfort in, something that never fails.

      More and more, though, others are making the first move and opening the door for me, which shouldn't make it easier, but does. Emails and comments and re-tweets and whatever other form of communication; it all matters. 

Friday, February 7, 2014


     Sometimes, when I get a message or an email from someone halfway across the world that I've never met and will never meet, it forces me to realize that there's an aspect to this (and I'm using the completely insufficient "this" as an all-encompassing term for the Marfan's part of my life) that I rarely if ever think about - goddamn, it's lonely out here sometimes. I don't admit that to elicit sympathy, empathy, or anything else in that particular emotional range. I'm saying it because I know it's true for more than just me and one of the goals of this blog is and always will be talking about this shit as honestly as possible without veering into oh-God-it's-so-awful-I-just-don't-know-what-to-do-with-myself territory. I don't always hit the right balance between honesty and flat-out bitching, I know, but I try, because as important as this is to me, I was recently reminded that it's not just me I'm doing this for.

     Occasionally, I get emails from people who have found my blog. It always makes my heart jump a little when I see an unfamiliar email address in my inbox, because someone's talking to me about what only we understand completely. I don't say that with pride, because like many people in similar situations, it's not a knowledge I'm happy to have. Rather, it's something I wish I never knew. I doubt very much I'm alone in that sentiment, though I'm sure there are Perky Pollys out there who would contradict me and crow about how much stronger their relationships are than other couples' because of the things they've endured.

     Well, yeah, that's why the saying is, "What doesn't kill you," you know? You either break or learn to withstand it, but that in itself is not a unique phenomenon. Almost everyone you meet has something going on in their lives that only they and others in the same/very similar situation can fully understand. The thing, though, about making it through the bad times with a minimum of scarring, is finding the ones like you and doing what you can to make it better for the rest of the class. That's the whole point of the exercise, as I'm sure I've said in some previous post, and will say again.

     So, now that I've given you a three-paragraph introduction to the heart of the matter, let me spell it out. I got an email from someone in another country who is also paired up to a partner with Marfan's Syndrome. It's happened before and I like to flatter myself that it will happen again, but that doesn't take any of the shine from each individual message. Without going into detail that's not mine to give, the note was essentially a light in the sometime-darkness for me, something to keep working towards. I gave comfort and solace to someone, helped them find someone who knew what it was like in their head and for that, I'm grateful.

     I question myself and my motives for writing this sometimes, though my husband has told me repeatedly not to. He's happy that I keep this blog, because he knows I need it as a place to let my demons run. He also knows that I consider this my tiny contribution to the world, that it makes me feel as though I'm doing something worthwhile. It's no cure for cancer, but I know, I have proof, that this matters, if only to a handful. It's more than enough, though, to keep me from quitting and just keeping it to myself, which would be simpler, I know.

     That's not an option, not really. I may walk away from this to gather my thoughts from time to time and I'm the first to admit that I haven't exactly been prolific lately. There's reasons, though. Part of it is that I need to gather myself to begin opening up about the really murky, darker blue issues that have been haunting my husband and I for the past two and a half years. I can't go there yet, but I'm content in the meantime, knowing that someone's out there, feeling a little less the worse for wear because of what I was able to get out of my head and into the world.