Sunday, July 15, 2018

Days and Days

     I've had such a hard time coming back to this, as evidenced by my five-month hiatus. It wasn't any one issue in particular that led to my withdrawal, but rather that a whole mess of them had finally reached a boiling point and spilled over. I'm working through them, slowly, with the help of a therapist and an absolutely insane amount of journaling. This, too, this public accounting of what's happening with my husband's health and the havoc that it sometimes wreaks on our life, is painfully important, I've discovered. Without it, I've just become more and more withdrawn, and prone to, "Oh, it's fine." As that mindset is absolutely the last thing that I, as someone who struggles with anxiety, needs, here we are. Again.

      Now that that's out of the way, I can address one of the biggest issues that I was wrestling with in regards to this blog, and the interactions with people I was experiencing whenever I posted about a particularly gnarly day at the emergency room - why was there such a seeming disconnect with what I experienced and what I portrayed in my writing? Or, to be more accurate, why did I feel like there was such a disconnect? What was I doing wrong that led to raising alarms I never intended to set off?By that I mean that I was getting a lot of, "Are you guys okay?" and "I'm here for you if you need anything," which, to be perfectly honest, I did not understand.

     To me, those are the types of sentiments that are reserved for things like a death in the family, or if you receive a terrible diagnosis from your doctor; they're not for things like a hospitalization because your husband is seeping blood into his sinus cavities and no one knows why. And I know, that sounds completely fucked up, because why wouldn't your friends be concerned over something like that, right? Because, that type of thing is par for the course in our household, and the truth of the matter is, my husband and I have become desensitized to it.

     Of course, I've only just now really figured that out, and believe me, for someone who spends as much time in her head as I do, I don't really have an explanation for why it's taken me this long to see what's now pretty damn obvious. But, forest, trees, right? And that desensitization is, I think, what's been the biggest boulder in my path for the longest time, why I couldn't figure out how to do this anymore. Again, it's so goddamn obvious to me now that I can't believe it took me this long to sort it out, but better late than never, as the saying goes.

     I suppose for that explanation to make sense, I should tell you that I tend to be a person who doesn't have a lot of in-between in a lot of areas of my life. For example, my two favorite genres of music are bluegrass and heavy metal/rock, which are two opposite ends of the spectrum. My closet? Except for what I wear to work, the choices are either flowy, soft, Stevie Nicks-esque items, or things that make me look like some weird combination of a Nine Inch Nails/Sisters of Mercy fangirl. In short, there's a week's worth of daylight in between the two. So, with that in mind, it's easy now to see why I couldn't reconcile the two faces of my husband's disorder - it's both very, very serious, and also very, very mundane.

      That's the connection I couldn't make, the truth I couldn't figure out how to convey. So, I just retreated, and stopped sharing our day to day, because I couldn't get it to make sense to anyone but me. The reality of living with Marfan Syndrome is, for us, both of those things - serious and mundane, and all the emotions around both. What I eventually realized was that while they both tend to live in opposite corners of the house, it's still the same house. Serious and scary and life-threatening can happen at the same time as standard and mundane and just-another-day, and that's the piece I couldn't reconcile until very recently.

     I couldn't figure out why people were reaching out to me to offer support in light of events that I didn't think of as anything significant. (To be fair, my husband rarely sees things as super-serious, even when he's the one on Day 4 of his latest hospitalization, so it's not just me.) I couldn't see where the disconnect was coming in, because for me, this is just how it is. We're at the hospital enough that I have favorite parking spots in more than one garage, I have a color-coded planner to keep track of all of my husband's doctor appointments, and we just know that there's always a chance we have to drop everything and run for the emergency room, because maybe today is the day that it's not just back pain, but an aneurysm that's about to burst. I suppose when you live with a shadow in the room 24-7, you learn to adapt to its presence, until it no longer feels like a threat.


     I should have taken into account, though, that most people don't live with that shadow, and so what I view as a factual account of what happened and what could potentially happen, others read with horror, that this is happening to someone they know, and on the semi-regular. I couldn't see that, couldn't see why others didn't read my posts with the same mindset as I'd had when I posted them, which is an absurd assumption on my part. Why in the holy hell would they? More than that, how could anyone else possibly know where my head was at when I sat down? Looking at it now, I'm just amazed at my own obliviousness.


     The good news is that ultimately, I think I'm going to have an easier time of it, now that I've come around to the idea that something can be both concerning and not that big a deal at the same time; the two things can co-exist. I think, too, now that I've thrown it out there, that this is our normal ( if there even is such a thing), that maybe people will be able to read these posts with more of the spirit I intended. I mean, unless I'm unexpectedly gone from work for more than a day at a time, or I'm calling his parents, telling them to catch the next flight out of Charlotte and get to St. Louis, it's a pretty safe assumption that whatever happened is another bump in the road, rather than the car going off a cliff.

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