Friday, March 18, 2011

Aaaaand Exhale

     Actually, that wasn't as bad as I thought. When I last wrote, it was about a subject that lives not-so-quietly in my head, afraid to be seen by anyone outside of my head. That puts a lot of pressure on me, to find a way to be okay with the thoughts that I sometimes wish I didn't have. Even now, having discussed it with my husband and putting the words out there for all to see, I'm still not one-hundred-percent okay with it.

     Some part of me still feels mean and ugly for sometimes wishing that things could be different with regard to the Marfan's Syndrome. Granted, that part has gotten considerably smaller since airing my (dirty?) laundry and most of me is fine with how I feel about the situation. Talking about it with my husband was instrumental in that, because he is the one person whom I most wanted to keep those thoughts from, lest I make him feel in any way guilty for marrying me. (And that right there is a topic for another day, because WOW, there's a lot of depth to that one.)

     I want to say again, because I think it's another key piece of the whole, that this blog is not for those afflicted by Marfan's Syndrome and similar disorders, nor is it for the parents of; this blog is meant to be a safe place for those of us who are in love with these broken creatures and are trying to figure out how to navigate life together. I speak only for myself when I write, though I suspect there are many more who have thoughts that mirror my own and are possibly too afraid/ashamed to give voice to those thoughts.

     I know that there have been times when I feel frustrated and alone when dealing with my particular brand of married life and while I'm sure every spouse/partner feels that way at one time or another, this is a bit different. With that being said...

     My husband and I talked for awhile about the issue I last addressed, that of me feeling like once in awhile I don't want to have to deal with a chronically sick husband. It's a topic that I never wanted to bring up to him, for a multitude of reasons. I didn't want to reinforce his feelings of guilt for "saddling me with" him and his disorder, I didn't want him to tell me that it was okay, but secretly harbor feelings of resentment towards me, and I didn't want him to take it completely wrong and think that it was a pre-cursor to me eventually telling him, "Sorry, but you're just too damn much work. Gotta go". Okay, that last one was about as likely a scenario as me winning a scholarship to M.I.T, but still. All these possibilities and more were dancing around in my head while I tried for months to figure out how to bring it up.

     Of course when it finally happened, it was much less dramatic than all that. It was a simple conversation before bed when I confessed that sometimes I wanted nothing more than for him to be healthy. That by itself doesn't seem bad at all, because who wouldn't wish perfect health for the one they loved? Makes their life much better, right?

     Well, that's true, but the truth of the matter is that I was loathe to admit that I want a healthy husband for my own selfish reasons. I could lie and say that those reasons don't matter and that's how I got over it, except that I don't believe in lying, to myself or anyone else, and if I did that, it could only hurt my marriage. I believe those reasons DO matter, very much, because a relationship is TWO people, not one and their caretaker.

     I want him to be healthy so I don't feel guilty asking him to put up a new light fixture. Is that how I feel now? Well, yeah, sometimes. Last night was a perfect example. I was scrubbing the tile in the kitchen and asked if he would put up the new fixtures in the bedroom and kitchen. This was not a ridiculously taxing activity, or it wouldn't have been for ninety-nine percent of the population.

     For him, it resulted in an increased heart rate (always dangerous for him), loss of feeling in his arms and excessive sweating. A simple task. As soon as he broke a sweat, I felt awful and tried to get him to stop, but he's rather tenacious at times and wouldn't quit until both fixtures were properly installed. Once again I thought to myself, "Why is everything such a production?" Overly dramatic on my part, yes, but not an inaccurate verbalization of how I felt in that moment.

     I could go on for days with anecdotes similar to that one, but that's not the point. What I'm trying to say here is that I'm becoming more okay with those thoughts that I previously tried to ignore/deny because I've realized that they're valid and NECESSARY in our relationship. My feelings on his illness are just as important as his own and must be addressed.

     For any marriage/committed relationship to be successful, I believe it must be comprised of equal partners whose feelings and troubles are given equal priority when it comes to working through them. Of course, there are going to be times when, because of the Marfan's and its' related fun times that I will have to put myself wholly aside to focus on him and I'm more than willing to do this for him. More than that, I want to do that for him, to be that person for him.

     While the thoughts are still present from time to time and likely always will be, I'm more at peace with them. I think that at first, I was subscribing to the myth that all people dealing with adverse circumstances, such as a chronically ill child or spouse, deal with the hand they're dealt gracefully and are only better for it. I believe that I eventually will be a better person and partner, but that's going to be a long time coming.

     I also believe that that's the norm; it's just that most aren't ready to admit it. The truth of the matter is that yes, a parent is going to think, "I love her, but life would be so much easier if my daughter didn't have MS." A spouse is going to think, "Why can't he just be healthy? It would make things so much simpler." I hope that we can get to a point where it's okay to say it out loud, not just as an anonymous commenter in a forum somewhere. I'm doing the best I can to fulfill my role in getting us there, but I think it's a long road ahead.

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