Thursday, January 16, 2014

I Can't Quit You, Baby

     I wasn't sure if I was going to come back to this or not. I have no idea if it's actually doing anyone any good or if  I'm just making noise to keep myself company. Probably a lot more of the latter, if I had to guess. I almost didn't come back, instead thinking I could pay more attention to my paper journal, which is easier for me to access anyway, considering I don't leave the house without it. I can usually fit in a cathartic entry while I'm on my lunch break; not so this blog. So really, what's the point? The point, I ultimately decided, is that whole idea of, "if I can stop one heart from breaking." I know it seems awfully saccharine and, to those who don't know me so well, not something I'd use as a point of reference for living, but I do. It's everything, actually. So, with that being said, onward and upward, kids.

     My husband was in the ER two nights ago for the same damn thing he always is - back pain so bad he was struggling to breathe. He did what is, for him, almost a ritual at this point - arrived at the nearest emergency room, gave the nurse at the front desk a rundown of his symptoms and waited until they took him back to triage. He never comes back out of triage, by the way, not like the other patients whose blood pressure gets taken and charted and then told to go back to the waiting room until they're assigned an exam room. My husband? As soon as the medical staff sees the full extent of what they're dealing with, he gets to go directly to the exam room, without passing "Go" or collecting $200.00

     This scenario was somewhat different this time around, though, because I wasn't there with him. Why? Because I was sleeping, dammit, and I didn't want to leave my cozy, warm bed at 12:30 in the damn morning to go sit in a hospital room while they hooked my husband up with some painkillers and told him to call his doctor in the morning. I knew what was going to happen and so did he; we've seen this episode 1,264 times and the ending doesn't change.

     You know what else, though? This isn't the first time things have gone down this way. Nope, happened for the first time last summer, when we were still living in Charlotte. He came home from work one night, so it was about 1:30 in the morning, and came into our bedroom to tell me that he needed to go to the ER. I could hear in his voice the level of pain (a weirdly accurate barometer), and the truth is, I knew it wasn't the worst it's ever been. He could still walk, he could get in and out of the car, and he could still work the clutch to shift gears as he drove. So I asked him if he needed me to go, or if I could sit this one out.

     Granted, I was still half-asleep when I was having this conversation, but he was fully awake when he told me to stay in bed, that he was sure the ER was just going to do what they always do - dose him with Dilaudid and tell him to call his primary care in the morning to schedule a follow-up. I knew he was right, and that, combined with my need for sleep since I had to be at work at 8:30, made the decision fairly easy. I turned my phone's ringer on, because we both knew the ER would never let him drive himself home after they'd given him narcotics and I would have to come pick him up when he called.

     Sure enough, the scenario played out exactly as he thought it would and when he was released at about 5 a.m., I drove over to the hospital in my pajamas and brought him home. I still had a couple of hours before I had to be awake for work, so back to bed my tired ass went. And that was the beginning of me realizing that it might just be okay if I wasn't there with my husband every time he went to ER.

     I felt guilty about it at first, but the more I thought about it and talked to him about it, the less guilt remained. I mean, hell, I used to drop him off at the ER on my way to work in the morning when the pain woke him up from a sound sleep and I never thought twice about it. He didn't, either, just so we're clear - we agreed a long time ago that we'd try to keep things as normal as possible and not let that damned disorder (as I oh-so-lovingly refer to it) rearrange our lives. Really, then, what's the big damn deal about not waking up from a sound sleep just to sit in a room and try to stay out of the medical personnel's way?

     If he needs me to drive him there, so be it. I understand that and would of course get my ass up and take him wherever we needed to go to get him treatment. If he really can't face the sterile fluorescence of the hospital by himself for whatever reason on any given night, then I'm there, no question. But a routine painkilling session? I think we're both at the point where neither of us see any value in it anymore.

     I think the problem I had with it at first was more of a manufactured guilt, and not one that I built myself. There's this pervasive sense of stoicism that I've found in my travels through the uncharted waters of being partnered to a guy with Marfan's Syndrome, and I've come to the conclusion that it's pretty much bullshit. And really, I think that can apply to any sort of disability or illness, chronic or acute. It's like, the healthy one is expected (quietly expected, this shit never gets said out loud) to just be there, all the time, for everything. And yeah, a lot, a lot, a lot of the time I AM there for it all. Good, bad, ugly, weird, scary, all of it. Why, though, am I there for things he can easily handle on his own?

     "For support, you selfish cow, to show him you love him!" Go ahead, self-righteous super-wives, tell me how I'm doing it wrong, how if I were truly loving and supportive, I'd be there, 2 a.m. hospital trips be damned. Turn that around, though, look at it from the other side. My husband loves me, knows the extra pressure his disorder puts on our marriage and our life in general. With that in mind, if we've come to a point where he can do a small thing for me like let me sleep in our bed instead of zombie-walking beside him into the ER, why wouldn't he want to do that? And wouldn't I be kind of a self-sacrificing (nobly, of course) bitch if I insisted on going with him anyway, "for support", even if I was clearly miserable and serving no purpose other than making him feel bad about himself?

     Or I'm just rationalizing not wanting to get out of bed. It's definitely one or the other. 


Sischo Family said...

Feel no guilt. This damn disorder sucks! My husband just spent two days in the hospital and I saw him twice. I don't live him any less. I've just been dealing with rtf he trips to doctors & hospitals for a long time. My husband is in no way as bad off as yours. His spine is starting to revolt now. I'm sure, if he lives ling enough, I will be in your boat. Hang in there. Take time for yourself. Feel no guilt.

D.K.Style said...

It's probably both, but that's ok. From another Marfanoid husband, if he's anything like me, he's less stressed if you're okay so get your rest. AND PLEASE keep blogging

Anonymous said...

If you and your husband are in agreement, than that's what you should do. It may help him to know you're not burning the candle at both ends and he doesn't need to worry about you on top of what he's dealing with.

Andrea Bertucci said...

I say, stay in bed!!!! My son has Marfan's in this family, and luckily enough he is a healthy Marfan's patient. I however suffer from chronic kidney stones...I know when I need to go to er for pain relief and when I don't. And of course these attacks always hit in the middle of the night, do I want or need my husband there? Nope!!! They are going to check me out, let me know that I do indeed have a stone and continue to treat me with pain meds and the whole time I will be sleeping! Finally! So if I think I can get myself to er, I do so. I am actually a lot less stressed if I know my husband and young daughter are home getting their sleep instead of at er with me. If I can't get myself to er, I am more inclined to wake up my Marfan patient son and have him drive me to er, he would look at like an adventure, and then send him home. There should be no guilt in anyway on any level! Unless he can not physically drive himself, I say staying in your bed is where he wants you to be! That is where I want my husband when the spawn of satin arrives!

carlo b said...

No one has the right to give an answer. Is a matter related to you and to your husband only.
But i can tell you that, if i were ur husband, i would be happy to let you sleep. Happy to be able to deal with what i can clearly deal.
You know, as other things in life, Marfan is a burden. Is my burden. All the love of the world won't change that.
I hope you understand what i mean, i don't say this to undervalue your feelings towards your husband. My words mirror my personal vision of life.
Anyway, when i recognize i can walk on having this burden on my shoulders i find i got soething. For me and for the ppl who love me.

Kris K said...

I think I get what you're saying, Carlo - no one can make that call but me and my husband. I agree, or at least my logical side does. But it doesn't completely override the guilt, and the nagging fear at the back of my brain that tells me others are judging me, thinking that they would be better in this situation. I'm not an insecure person by any means, but it's a lot, you know?

carlo b said...

The words i used in my former comment were too direct, too "ideal". It happens that I fall into this ways... I like ideals, but life is hard, life is never ideal and the maximum we can provide seems not enough sometimes.
I think i know what u mean. Today i finally found the time to better look at ur recent posts, u are a strong person, and u look at things with clarity. I think u know what is to be done. U have a big weight to stand and from ur words i understand ur husband can count on u, every time is needed.