Monday, April 18, 2011

Do You Want to Know a Secret?

     Last Friday's hospital visit was not the first one that's taken place during the workday. There have been at least five other incidents that I can think of in the past eighteen months. It is, however, the first one that my husband's boss knew about. I feel vaguely guilty about this, because our boss is one who likes to know what's going on in his employees' lives. He likes to touch base with all of us and he tries to foster an attitude of approachability, so that when one of us is faced with a problem, we all pull together to make it work.

     That's exactly what happened to me and my husband last week when it was discovered that he was a bit worse off than just "not feeling well". One of my co-workers came in on what was supposed to be his day off to cover for me and the other one stayed late to ensure that everything was running smoothly until the other one got there. You don't find offices like mine very often, so why the secrecy with regards to our hospital field trips?

     Before I came on the scene, my husband did not disclose his illness to anyone he worked with. As far as anyone knew, he just had a bad back that went out once in awhile and caused him to miss a day or two of work. The only reason they knew that much is because he had to tell them something and "I've got the flu", doesn't work after the fifth time in as many months. I knew about the Marfan's before we ever started dating and while I tried to encourage him to come clean with our boss, he was very, very reluctant.

     Most of his reasoning on that point was because he was/is so very uncomfortable with a public admission that he's not alright. One of the things he hates most about having Marfan's Syndrome is the potential to be pitied by people when they find out. He's never wanted pity, never wanted to be treated differently, and that's exactly what he's always afraid he'll get if he discloses the full truth of the matter to anyone.

      He and I, we're working on that and I like to believe I'm making progress with him in that area. I'm trying to get him to look at it differently, that people can have empathy for him/us and the situation we're in without thinking he's a pathetically broken creature, but his head is really thick. REALLY thick. So it's a constant work in progress.

     I'm still not one hundred percent sure how our boss found out what was going on, because I know I didn't tell him and the only person who knew where we were didn't tell him, either. It doesn't really matter how he found out, because it's not a bad thing, as I'm trying to get my husband to understand. The thing is, we have a routine for when an ER visit is in order. The pain always wakes him up very early in the morning, around 5 or so. His moving around in the bed to try and find relief always wakes me up and I'm usually the one to say, "Do we need to go?" His answer is always, "I guess so," and is always said with the greatest reluctance.

     He then sends an e-mail to his/our boss, which I'm sure simply says that he's not feeling well and will not be in that day. He never elaborates on what exactly is wrong. We then get up and I help him get dressed, put him in the car and take off for BJC, the hospital where his specialist is based. Park the car, take him to the waiting room, wait while he gets his vitals taken and gives his insurance information. We rarely have to wait long for a room, because a heart condition is like the golden ticket in a hospital situation. Once he's back there and has changed into his sexy, sexy hospital gown, we wait for the tech to take his vitals. Again.

     Then comes the nurse, who hooks him up to the heart monitor and draws his blood for the tests that they run every damn time. Finally, the attending physician comes in and asks the same questions he gets asked every time we're there. There are always x-rays to be had, medical histories to review, painkillers to be administered through an IV. I hang out as long as I can before I have to leave to go to work and when the clock tells me it's time, I kiss him, tell him I love him and go on about my business. He texts or calls me when he's released and I use my lunch break to pick him up and take him home. Then I come back to work and finish my day, with no one the wiser as to what's going on behind the scenes.

     I know, it seems like a lot of extra work for something that likely wouldn't cause a problem. In my husband's case, it almost surely wouldn't cause a problem. I've mentioned before that our employer is unusually gracious about sick leave and things of that nature and I know no one would say a cross word about a hospital visit. We're so damn lucky in that respect, because I hear stories of people who are so scared of losing their jobs that they wouldn't dare tell their boss about a trip to the emergency room for fear of being seen as a liability and subsequently cut from the payroll. I cannot articulate the level of gratitude I feel at not being in that situation.

     No, in our case, it's really more the fact that a trip to the hospital just doesn't mean the same thing that it does to most people. It's not that it's a non-event in our lives, but it's not inaccurate to say that visits of this nature are routine for us and therefore rarely noteworthy. Now, this latest one was, for the simple fact that it was the first time since we've been together that his heart has been brought into the picture. Every other time, it's been just the pain in his back, clearly caused by muscle cramps. This time was different for that one reason and because of it, I didn't react the way I normally do.

     This trip, I wanted very much to stay at his bedside and not to leave him until I heard the doctor say his heart was whole, but I didn't feel comfortable doing that. I didn't know how to tell our boss my husband's true whereabouts without making it sound worse than it was, because to us, it was just another day. On the other hand, as I write this, it occurs to me that perhaps my husband and I are the ones with the murky view of the situation. Perhaps we don't give it enough gravity and instead write it off as just another part of dealing with Marfan's. Perhaps we need to treat it as something  more than we do.

     I know that the next time it happens, I will make sure that he tells our boss exactly where he is and what's going on. We're too far into the light of day to pull back into the closet with regards to telling people the truth about his disorder. As painful and uncomfortable as it is for him to talk about, it has to be done. For too long, he's hidden everything he can and tried to deal with it as best he could. He's accepted help from very few, asked for it from less. Here's hoping I can help him to understand that it doesn't have to be us against the world with this; people are there and willing to help, but you have to let them.

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