Wednesday, December 28, 2011

I've Got a Feeling I'm Falling

     To be more accurate, my husband was the one doing the falling and there wasn't really a feeling that preceded it; he just went down. It happened last Monday, as he was getting out of bed to turn the alarm clock off. Since he leaves for work before I do, I was still soundly asleep when something happened and he went crashing to the bedroom floor, shaking the house and waking me up in a most unpleasant fashion. I came up from the bed immediately and I knew instinctively that the loud thud had been my husband's two hundred-pound frame hitting the floor. That probably shouldn't have been my first instinct and the fact that it was speaks volumes to what it's like living with something like Marfan's Syndrome. I guess it was just lodged in the back of my brain somewhere that this was going to happen sooner or later.

     He wasn't really moving or making noise when I jumped out of bed, though to be fair, I didn't have my contacts in and I'm all kinds of blind without them. Again, I guess it was instinctual, but even as I knelt down next to his curled-up form on the floor, I wasn't ever afraid that the dreaded aortic aneurysm had let go; I knew it had to have something to do with his back. I didn't touch him as he lay there, but I asked him what happened, what hurt. He couldn't really respond with details, mostly because he didn't know. He managed to convey to me that he needed to go to the hospital, so I quickly got up and made the standard preparations, i.e. send an e-mail to his boss letting him know that he'd be making a trip to the emergency room instead of to work.

     I got up and got ready for work, since I had to be there in a couple of hours and I intended to hold to our standard operating procedure, which is to drop him off at the ER, see that he's settled and then go on to work. I was almost ready to go and my husband still hadn't been able to make it up off the floor where he lay in front of my dresser. I couldn't get him up by myself and he'd been down there for about thirty minutes at this point, so I told him that if we couldn't get him up in the next ten minutes, I was going to have to call an ambulance. If there's something he hates more than calling attention to his disorder, I don't know what it is and the thought of being hauled away in an ambulance was apparently worse than the pain he was in, because he dug in and, with my assistance, made his way off the floor and onto the bed.

     I dressed him, put his socks on, tied his shoes. I didn't look at his face while I was doing this, because I knew how much it pained him, both physically and emotionally, for me to have to do the most basic of tasks for him. He hates it, absolutely detests it, that his disorder can, at times, render him helpless to some degree. He's such an independent soul, almost to the point of his own detriment, and as someone who's very similar in that regard, I have to do everything I can to respect that about him and ease the frustration when things like this happen. I'm usually not successful in easing his frustration, but that's going to be a lifelong battle and one that I can only hope to win piece by piece.

     My husband had to use his crutches to get to the car, which is something new for us. He's used his cane before, or put his hand on my shoulder for support while he's walking, but this time he could barely move, even with the extra support from the crutches. As I stood behind him, watching him make his slow, painful way down the hall to the kitchen door, I couldn't stop the bad thoughts from flooding my brain, unwelcome though they were. It struck me so hard in that moment how bad this could potentially get, that his semi-immobility has every possibility of becoming a daily occurrence and neither of us is even remotely prepared for that.

     The actual hospital visit was relatively uneventful, except that my husband asked me if I could go get a wheelchair for him, as he couldn't walk into the building under his own power. That's also a new one for us, as he's always been able to at least walk as far as from the car to the emergency room, but it wasn't a surprising request, given the events of the morning. The nice security guard at the front desk went and got a wheelchair for me and came out to the car to get my husband and take him in while I parked. I stayed only long enough to see his vitals taken and make sure he was as comfortable as he could be in the waiting room before I had to leave for work. I always hate leaving him there, but the practical side of me knows that there's nothing else to do. Once he's taken back to the room, he's immediately drugged anyway and doesn't know if I'm there with him or not.

     As it turns out, the dural ectasia is responsible for this latest ER visit. Truthfully, I've read about dural ectasia, what it is and what it does, until it felt like my eyes were ready to bleed and I still don't completely understand what the hell's going on. What it essentially boils down to is, the dural ectasia kicked in, caused my husband to have a head rush of epic proportions and he semi-blacked out/lost all sense of balance and control and went down hard. That's why he didn't catch himself when he started to fall - he couldn't, because he didn't know he was falling. I had something like that happen to me when I was thirteen and to this day, I'm afraid of it happening again, even though it was a freak thing and the odds of recurrence are slim to none. I don't know what it would be like to know that the loss of control could happen at any moment, anywhere.

     I want to end this post with something lighter, smart-assed, even. What I want and what is are two different things, though, as can be the case. I can't be light about this, however much I want to, because it was a significant occurrence for my husband and I. All the little discrepancies, the ways that this time was unlike all the others, can't be discounted for what they are. Now, what they are, I can't say with surety. They could be markers of what's to come, indicating that the degenerative nature of his disorder is really picking up steam. They could be nothing, the flukes that happen because the human body never reacts in exactly the same way twice. Or they could be indications that my husband's second spinal fusion isn't so far off on the horizon, which is my favored theory.

      It wasn't exactly light, but damned if there wasn't hope there. I'll settle for hopeful.

2 comments:

Ms. B said...

HOw does your husband cope with the dural ectasia. I have been to ER on several occassions due to it. I have alot of pressure in my head and the pain travels down to my back. It make me very weak at my waistline and I am unable to stand up straight because it feels as if my back is having a contraction. It is VERY difficult for me to walk even a few feet when the DE kicks in. I'm taking Norco but it really doesn't help. I'm tempted to ask my dr for Dilaudid pills and just take them when I feel DE coming on.

Kristin Lee said...

I wish I had a better answer for this, but unfortunately, he doesn't have a good way to cope with the dural ectasia. He's been sent home from the hospital with Dilaudid before and while it certainly helped when he took it, his body became addicted to the painkillers after only 3 days. Check out http://www.marriedtomarfans.com/2011/04/theres-no-sickness-like-dope-sickness.html if you want a more detailed account of what it was like. He won't take Dilauded anymore, so his method of coping at the moment is to ride it out.