I don’t talk about my heart condition much. Some people assume this is because I find it an uncomfortable topic. That’s understandable. I mean, it puts mortality in the picture and what self-respecting 21 year old ever wants to admit they’re mortal? But truthfully, I don’t mind talking about it. It always seems to be others who are more uncomfortable than I am when the topic is brought up. The reason I never seem to make it an issue is because to me – it isn’t one. I don’t know that much about it, past what it feels like and some of the treatments I’ve had and might have to have. But I’m also fairly anal about people talking to me about it. It always seems that someone knows too little to understand or too much to think I can keep up. For example, when my anatomy teacher spent 20 minutes explaining to me the anatomy of the heart in an attempt to relate, that annoyed me. I know that he was trying but it wasn’t working. On the other hand, doctors in emergency rooms who assume that I know nothing about what’s going on in my own innards and then make an attempt to sound knowledgeable by using medical terminology make me want to take a scapel to them myself. Especially when I’ve just heard them on the phone asking my cardiologist to explain the parameters of my defect, please.
There’s always that cringe of fear I feel when I have to tell someone I have a heart condition. There are always certain assumptions people make about me as a person when they hear this. If they’ve known me for any amount of time, they express some amount of surprise considering how much of an energetic person I can be sometimes. I don’t usually fall over clutching my sternum, gasping for breath or turning blue whenever I run. Usually. There’s also the breed that assumes I need to be treated with a certain amount of delicacy. This pisses me off. It’s true I’m limited in some ways, but I don’t need to be treated as though I’m going to explode. I’m not a time bomb. There are the usual questions of “what’s wrong with your heart?” “have you ever had open heart surgery?” “why don’t you just get a transplant?” And usually looks of confusion when I try and explain things. Well, if you’re so surprised that I actually have a heart defect b/c I’m so normal…would you want to get a life threatening operation? Could be just me…but I’m opting for No.
I suppose the biggest fear I have when telling someone that there is something wrong, bad, dysfunctional with me is that they will allow that to define who I am to them. Obviously, most people don’t. But there’s still that threat.
There have been a few rare times when my condition has influenced my life in a way I notice. Most of these times are my own fault – when I don’t observe my own boundaries. (It has caused some mightily humorous incidents as well – such as meeting a VERY attractive tattoed EKG tech named Derek, and throwing up all over my principal in high school…but those are stories for another day.) And there have been times it’s acted up on it’s own. I’ve now set the record for the fastest 1-to-1 heart rate without death for the Salem Hospital. Go me! And the last round of problems (atrial defibrillation) have been the only ones where I’ve seriously thought “hey…this could suck. I could die.” Well…suck minus the Jesus factor.
I had a heart appointment last June where they stuck me on a treadmill and ran me until I passed out. Literally. That’s always my favorite type of test. But the ironic part was my heart was perfectly fine even as the black shades were closing around my vision. My heart was as healthy as it could be. My brain however, was not. Apparently, with all this fear I’ve had about people defining me by my defect – I’ve been doing that exact thing. When my heart rate hits a certain point my own self-defense mechanisms kick in and I start to lose consciousness so the exertion will stop. *Goldmember voice* Isn’t that Veeiiird?
My cardiologist keeps encouraging me to be as normal as possible. Do normal activities (minus marathons and PE classes), have normal friends (well crap), go to school, stay up late…just be healthy. And for the most part I do that. But the past few years, I’ve gotten a little affectionate with this transposition defect. I don’t mind it so much anymore. It’s becoming a part of who I consider Rogue to be. I don’t let it define me completely, only allow it to help define me. It gives reason to some of the things I do. And yes…I still lash out in anger sometimes when I remember that I don’t understand why it was given to me. And yes…I still get scared. And no…I still don’t want a transplant.