I said I was going to write this to help others affected by CHD. If I don’t share how I really feel I don’t think people who are reading this for support and to have something to relate to will benefit. In addition to the technical jargon blogs that can get a bit confusing I want to talk about real stuff. The stuff no one else will talk about.
Mental Status: On the brink of disaster
Having a great support system is vital to surviving. If it wasn’t for mine I don’t know where I would be. The amount of time, money and emotional support given to me is insurmountable. I cannot thank everyone in my life enough.
That being said there is a side of having something incurable/debilitating/life threatening that a support system will never be able to comprehend or keep me from. No matter how much support you get there will always be a part of you inside that says
“You people could never understand what it’s like to be in these shoes. You cannot possibly understand the magnitude of what is happening to me.”
No one prepared me very well to have this condition in my adulthood. My parents did a good job at raising a confident contributing member of society and I don’t think they could have done anything differently that would make my current situation better. If the doctors don’t know the answers to my questions now, my parents surely didn’t know the answers back then. Looking back, being a kid with half a heart was a cake walk compared to adulthood. Sure, I never played certain sports, instruments in band, or ran a marathon. The stakes are different now. When you get to be an adult things you never thought of start becoming a real worry. “Will I be able to have children?” “Will I ever be able to have a job and live on my own?” “Is this medicine going to make me lose another vital organ?” “How long can I REALLY expect to live?” The worst part about all these questions for me is a lot about my condition into adulthood isn’t figured all out yet so the answers I get are educated guesses. I am a very analytical person. I like to know what something is, what it’s going to do, for how long and all the possible outcomes in each scenario. It drives me to the point of insanity that most of the time I get answers like “You should be ok.” or “So far people have been ok on this medicine and the women who suffered liver failure were older.” or “No one can really say, it’s a wait and see thing.”
Bring all these thoughts around to today. I have to have another surgery. I know that. I know I have to do it, there is no choice. However, knowing that it’s not a choice and it’s the best thing for me at this point DOES NOT make it any easier. Recently I have developed insomnia because I can’t seem to stop thinking about it. Yes, I’m angry. Yes, I’m scared. Yes, I want to punch a random stranger in the face at times. Most of the time I battle whether to talk about how I feel or keep my mouth shut. I find there are two kinds of responses when I try to talk about things. One: Ignoring what I say and just keeping it positive as if there are no reasons to worry or Two: I shouldn’t be talking about it because I am worrying other people.
Generally, if you have a good support system, their first instinct is to keep you going, make you think positive.. help you find your faith. Believe me that’s a good thing. I know that no one really knows what to say. If I were in their shoes I wouldn’t know what to say either. To be honest, most of the time I don’t wanna hear “You’ve been through this before, you’ll be fine.” “It’s no big deal.” “You have a lot of support, you will be ok.” I get tired of hearing the same old thing. I really just want to hear “This really sucks. I know you are going out of your mind. I wouldn’t want to have my heart stopped for hours so it can be cut on either. “ Or maybe I just don’t want to hear anything from you at all and have you just listen to me be pissed off. The best thing someone can do for me at this point is listen when I wanna kick my feet, scream and punch a wall.
Now when I get the other response mentioned it makes me infuriated. Yes, let me please think of how my situation is affecting others around me because God knows I wouldn’t want to worry anyone. I’m sorry if this worries you. Guess what??! Your worry about something happening to me doesn’t come close to mine so please do me a favor and pull your head our of your rectal sphincter. I am not trying to be callous about others’ feelings. I understand everyone is concerned but telling me not to talk about what is going to happen to me because it worries you isn’t helpful. In fact, it’s selfish and rude and unbelievable. I can say this because I am not a person who comes out and says how I really feel. I do not go into a room full of people and turn the conversation to me and this thing I am dealing with unless I am doing it for a purpose. Ex: Due to me being in the hospital I need X,Y, or Z to happen. Even then, I generally never bring up feelings, I state facts. My point is, I do my best to avoid it being all about me so I don’t appreciate when my situation is more devastating to you than it is to me and I, in turn, have to console you. Not fair, not right.
Another thing. When I state facts… yes facts.. about the actual procedure and what it entails I am not “being negative”. I know the procedure sounds scary but until I can think of a positive spin to put on the fact that my body will be iced down to cool my core temperature and then my heart will be stopped while I am on a machine for 6-12 hours until they are finished and attempt to restart my heart, you will just have to consider me negative. I am a very analytical person as I said before. I am also realistic. I see every possible outcome and complication of what is going to happen. Even as a little girl I had to know what every machine was, what it was going to do, how long I was going to be on it and why I had to have it. This hasn’t changed in almost 26 years. I think it’s one of my invisible defenses. In my head I think if I know every twist and turn there won’t be any surprises or disappointments. Call it negativity if you want but I really don’t have a negative outlook on it all. I have a realistic outlook.
Bottom Line: I’m going into this prepared for whatever could possibly happen or not happen. If I wanna talk, let me talk and sometimes don’t say anything in return. If my condition stresses you out to where I am overly comforting you or avoiding my feelings because of yours every time we talk about it, please find someone else to talk about your stress over it besides me. I have a full-time job keeping myself out of a straight jacket.
Luckily: Disabled 