Sunday, November 2, 2014

How Soon is Now?

     I've been dragging my feet about getting back to this, and the honest truth is, that's not the least of the things I've been dragging my feet about. My husband's health has been relatively (always, always relatively) stable since April, thanks to the glory of the fentanyl patches that he's been wearing since then. We haven't been to the emergency room since then, and he's only had a handful of days where the pain in his spine was too much and he had to call into work. So maybe that's part of my complacency, that the waters are finally calmer than they've been in a little over three years. It's really difficult to not allow yourself to relax in the lull when you've been fighting hurricanes for a long damn time, but still, I think my break's gone on a bit too long. I've got my breath back and my feet under me, so it's time to move forward.

     A big part of that moving forward is going to be embracing the sea change that I know is coming, because my husband and I are working towards bringing it about. We're finally ready to start looking towards permanency, which is going to require answering questions that neither of us wanted to address before. I don't necessarily think that was a bad decision, tabling a lot of the discussions many people have early on in their relationship, because we have a different situation than many. For a long time, my husband's Marfan's syndrome and the constant circus that surrounded it occupied so much of our time, so much of our available brain capacity, that we were in no position to be making decisions about houses and children and paths that can't be changed once embarked upon. We've made a lot of mistakes in our time together while we were stumbling along, but luckily, getting ahead of ourselves has not been one of them.

     We're currently working on the housing situation, as we've finally come to the point in our journey where a permanent residence makes the most sense for us. Actually, it's more than that - we've realized that purchasing a house, as opposed to the renting that we've always been most comfortable with, is going to be kind of essential in the coming years.

     Our decision, like so many others, has of course been influenced by my husband's debilitating disorder. We've been renting homes since we've been together, and never felt the need to make such a large and permanent purchase as a house, which I realize is in direct contrast to what many other families consider to be the natural progression of things. I mean, we weren't ever sure about where we wanted to settle permanently, and owning a house makes moving to a new place a lot more complicated than just telling the landlord, "Hey, we're gone in sixty days." There was also the financial aspect, which scared the ever-loving hell out of us, and kind of still does, but I don't think that fear ever goes away completely.

     The tipping point came when we were talking about where we might be in the next five years and we realized that he's got at least a 50/50 chance, if not greater, of being unable to work at that point. The fentanyl patches he's currently rocking, while fantastic, are really no more than a narcotic band-aid; by that, I mean that they're by no means a cure for what ails him. Rather, they're just keeping him propped up and (mostly) functional for the time being. However, he will at some point develop a tolerance for the drugs, probably faster than most people would, since he's been on and off of different pain management since he was twenty-two. When that day comes, it's essentially the end of the line for his career, because there is no stronger painkiller than what he has right now. Well, short of walking around with an IV of hydromorphone, but that's a bit impractical Also it's hard to fit an IV pole into the car.

     His mobility, while hit-and-miss right now, will be even more diminished in the coming years, and anyone who's ever dealt with a mobility-limiting disorder will tell you that there are some specifics when it comes to housing that you kind of  need to adhere to. The most important issue will be finding somewhere that has everything he needs on the first floor, as steps will not be do-able after a certain point. It will also need to be wheelchair-accessible from the outside, as well as having wide enough doorways and hallways to accommodate said wheelchair, because, while not a set-in-stone certainty, it's a very, very, very, very strong possibility.

     It will be challenging enough to find such a dwelling that we can afford in an area that will allow me to get to and from work with relative ease, so we decided probably we shouldn't complicate matters by continuing to rent. If we rent, we're not in control of what happens to the property, and there's every chance of being told, "Hey, the owner sold this place, so you've got sixty days to get your shit and go." That's daunting enough task when you're both able-bodied, but when one of us isn't? Nope. And then we'd have to look for another place that doesn't have a huge yard to take care of, and has everything on the first floor, and has wide-enough hallways and doors, and no. After taking all of that into consideration, we realized it's going to be easier to try and work our asses off while we can to save a down payment, and plant ourselves.

     And then there's the kid question. It's something we've been talking about for awhile, whether or not it's even feasible for us. We've gone so far as to discuss it with my husband's Marfan's specialist, who went over our options with us, and has us set up to speak with the genetic counselor next time we're in StL. Priority one, according to the doctor (and also us, but it was nice to hear the validation) is a healthy child, i.e, no passing on the jacked-up gene that results in Marfan's syndrome. Granted, this leaves us with pretty limited options for expanding our family, but there are still a few.

     In what may be one of the few silver linings of his illness, my husband realized that his not being able to work may actually work in our favor if the decision is made to produce/adopt a child, as he would be able to be a stay-at-home dad. This would work on a number of levels, not least because my husband's palate is remarkably similar to that of a 3-year-old's most days, and he loves very few things as much as he loves afternoon naps. So there's that. It's a very faraway, someday-maybe thing, but the conversation has at least been started, and that's HUGE.

     While I would love to say that I came around to this stop-watching-ANTM-and-get-off-your-ass mindset by myself, I can't. I mean, I've known I've been treading water for awhile, but I still wasn't in a place where I felt the need to do something about it. And then I got an email from the other side of the world that reminded me that I don't have infinite amounts of time to ponder and dream about this stuff; at some point, decisions need to be made and action needs to be taken. Everything changes, sometimes overnight, and in ways you never saw coming.


     Remember a couple of months ago, when I wrote about a message I'd received from a young woman whose husband had been abruptly taken from her due to suspected undiagnosed Marfan's? I emailed her back, and offered as much as I had to give, which was, in my view, pitifully little in the way of comfort. I found another email waiting for me the other day, and I'm so happy to know that she's still standing, and more than that, seems to be moving forward. I wanted, more than I can remember ever wanting anything, to know that she was okay, or at least was going to be okay, and it seems that she will.

     She told me that she felt as though we two were both trying to stay afloat in similarly uncharted waters, and I couldn't agree more. Though our experiences aren't exactly the same, we both have a common bond in that we don't fit the typical mold of a widow and a partner to a disabled man, respectively. I'm grateful to have had some part, however small, in her search for a way to be at peace with the tragedy that she woke up to. She's also started her own blog, which I just linked to if you clicky-clicky those words, and I think you should definitely go see what she has to say. Hers is an important point of view, one that, like my own, I don't think we see enough of.

     It was her email that reminded me to look at what I have right in front of me, rather than just waiting for "someday" to make plans. Everybody says they know that tomorrow's not a given, but I don't really think they do. Hell, I know I don't give it the weight it deserves, and I should damn well know better. As sick as he is sometimes, even when he's hospitalized, the possibility of my husband not coming home from the hospital just doesn't always register. And while I know I can't let that fear take any sort of priority in my brain, neither should I be someday-ing us into doing nothing, because we have to live while we can. It sounds so very, very simple, but then, why does it so often take a devastating loss to remind us of that?