Monday, September 26, 2011

When the Levee Breaks

     God, I'm tired. Physically and mentally and emotionally, just worn the hell out. I know how very overdramatic that sounds and believe me, I don't like writing it any more than you like reading it, but it's the truth. I'm entitled to my cliches every now and again, aren't I? I didn't realize until today how much I've been damming up in my head, thinking I can handle it, thinking it's never going to be too much. Except for, it is too much. Today was the first time I really thought to myself, "I can't do this alone," and meant it. For the entirety of my relationship with my husband, I've been confident that I can do it with just the two of us. Of course, in my head also lives the colorful cast of wacky friends and family who pitch in to help whenever I need them. It's like my own sad-ass little sitcom in there.

     My husband's Marfan's Syndrome got the better of him again this morning. And when I say morning, I mean morning, like 3am territory, which is when I first rolled over in bed and noticed he wasn't there. At this point in the game, I know what that means - my husband's in too much pain to sleep and he's gone downstairs to the rec room to play on the computer so his tossing and turning won't wake me up. Sometimes when I notice this, I'll roll over and go back to sleep. Sometimes I'll get up, grab a blanket and go sit downstairs in the La-Z-Boy to keep him company. I chose the former in this instance and when next I woke up, he was in bed beside me. Now, someone less well-versed in the ways of the Marf might have mistaken his slumbering and snoring as a sign that the crisis had passed and all was well. Me, I knew better.

     Sure enough, the alarm went off and I could hear him gasping in pain as he tried to get out of bed. I suggested he go take a really hot shower, because there was nothing else I could say and I held out the pathetic hope that the hot water might do his back some good by loosening the muscle cramps and spasms. It didn't, of course, and though my husband made a valiant attempt to get dressed and ready for work, he soon realized it was a lost cause. I don't even know how to describe it, because I've never experienced what he feels, but I imagine that it's akin to your whole body twisting itself into fifty knots simultaneously. So what did I do? Knelt down and put his shoes on him while he e-mailed his/our boss to say that he would be going to the emergency room instead of coming into work.

     I know he hated doing that, because every time he has to call in, he feels like he's disappointing me. While I don't think "disappointed" is the right word for what I feel, I can't pretend I don't feel something like it sometimes. Not every time, mind you, but enough that I'm ashamed of myself. I know, I know, I have no right to wish that he could just push through and work it out anyway. I just have that kind of mindset, that you don't call into work unless you're bleeding from your eyeballs and even then, you should only be gone as long as it takes to get the problem dealt with. I know it's not right, especially in the face of what my husband deals with on a daily basis with his health, but it's there nonetheless. It's one more thing to add to my list of things about myself that I need to work on improving.

     While that thought was rattling around in my head, I was also focused on getting my husband to the ER as quickly as possible so he could get some relief and I could get to work. (Yes, I was focused on work. It's that whole idea that I have to be super-employee to compensate for my husband's disorder.) As the song goes, I dropped him off, trundled off to work and waited for the text that said I could go pick him up. I started in on my morning tasks, believing I was fine, but then I started to feel that I wasn't. The nasty dance of one step forward, two steps back started to weigh heavy on me. Normally, I'm really, really good at taking things in little pieces as they come, but it all started to push at the boundaries of my poor brain this morning.

     I kept it together at work, because that's what I do. I do not deviate from that path, ever, because to do otherwise would feel entirely foreign and just wrong. Then, though, my husband called me from the hospital to say that the ER doctors were considering admitting him because the Dilaudid wasn't working and they "didn't know what else to do." Yeah, that phrase actually came out of the doctor's mouth, not that I blame them for it. Let's be honest here - the ER is mostly staffed by younger doctors putting in the requisite hours for their first internship who aren't specialists. It's not their fault they don't know what the hell my husband is or how to treat him. And truthfully, I don't believe they could've done anything differently in any case.

      That tidbit of information, that the doctor had admitted to not knowing what else to do to help my husband, is probably what pushed me over the edge today. It's one thing for me to say it, to think it, to share that thought with my husband, but it's an entirely different story to know that the medical professionals are out of ideas. What do you do then? Who do you turn to for help? It was at that moment that I realized no matter how many wonderful family members and friends I/we have, I'm ultimately the only one in my position and my husband and I are ultimately the pair that are going to have to do this. I've experienced the sensation of helplessness before, but never as completely as I did at that moment.

     It was one of those come-to-Jesus moments, I guess, when you realize you're the only one in a room full of people. (How many cliches can I fit into one blog post, right? We'll soon find out...) I have NEVER felt that way before and I do NOT like it, that much I know. I just felt so weak right then, like everything that I keep so nicely ordered and corralled in my brain had broken lose and was pounding against the walls. I was desperately afraid that the weak spot in my defenses was going to be found and then it would be all-out war to get everything back where it belonged. I'm not prepared for that and neither is my husband. Right now, he needs me and I just don't have time for this nonsense. See? Look how well I can talk myself into being alright. Maybe. Sorta. Kinda?


Jaime said...

I found your blog today and just wanted to say hello. I too am married to Marfan Syndrome and my daughter also was diagnosed.

And your feeling of being the only one in the room --- been there!!! Sometimes its all I can do to keep moving forward but somehow we do it for those we love. :)

Jaime said...

This is my Marfan blog --- I am working on getting updated -- soo much happened this year that it got left behind but I am back now! :)

Kristin Lee said...

Jaime, I'm really glad you found me and I hope you'll find something here that helps a little if/when you should need that.