Archives for: October 2006, 11
Last week I had a problem that sent me to the ER and then caused me to have to stay overnight in the hospital. This kind of thing happens to me 2 or 3 times a year due to my Marfan Syndrome. The thing that sucks is that everyone and their dog feels a need to not leave me the hell alone regarding this. I know that people care, but I really don't like talking about my health with people. There are a few exceptions to that, because I consider some of the people I know to be close friends, but most of them are not, and I don't feel like explaining to people that I am fine, I would much prefer that they didn't know that I had a problem at all. After 25 years of this, it's getting very irritating.
I know that people are generally sincere in there concern, but I am a very stubborn person when it comes to my health. I can take care of myself, I have gone through a whole lot in my short life, and I made it through to this far much do to my independent nature and stubborness. I don't like people trying to help me, I don't like people trying to sympathize with me, I don't want them walking up to me and asking me stupid questions, I don't want to explain in detail (or at all) what happened to me. I am stubborn, I am very internal, I am introverted, I am more capable of taking care of myself than anyone else, I hate sympathy, I despise obligatory sympathy, I could go on and on but I won't because I think I have made my point.
Now to switch gears. I mentioned earlier that I have Marfan Syndrome. If you know me then you probably already know what Marfan Syndrome is, if you don't know then you can google for it. The main thing about Marfans right now is that it's largely unknown to most people, even to many doctors. Right now the Marfan community is putting HUGE effort into spreading information about Marfan so that more people can become familiar with it, and thus more people will hopefully have their lives saved when they are diagnosed. Marfan is definitely a life-threatening health concern. The more people who know what it is, the more people will survive, simple as that. Also the syndrome is degenerative, meaning the older you get, the worse you get. So getting the word out and diagnosing people early in life is vital to get them on proper medication and healthy habits so that their quality of life will be better as they age. There are many more things about Marfan, but getting the word out about it is KEY at this point in time in the development of our understanding of the Marfan Syndrome.
So this is the story I find myself in. Reading above it is obvious that I don't like attention regarding my health, I would prefer that people didn't know that I have this illness. It is very alienating to know that people think you are fragile, it pisses me off to no extent. It is not a good feeling to have someone come up to me and ask me how I'm doing, it doesn't make me feel more loved, or cared for, it makes me feel small, it alienates me, and I dislike it. However, I am part of a community/generation of Marfan affected people who have a purpose. We have an obligation to make the world a better place for the next generation of Marfs. We need to get the systems in place so that they can survive, so that these people, who I don't know and mostly will never meet, can possilby have a better life than I get. This is a very serious issue to me. It is a "calling" if I may. And it has to overide my personal desires in regards to how I live my life. I have chosen this road by educating the people around me, in my life, at my work, full well knowing that the repercussions of such actions will be nearly intolerable for me at times in regards to the way I prefer to life my life. Every ignorant comment I receive is outweighed by the fact that I have an opportunity to educate one more person regarding Marfan Syndrome that would most likely be completely unaware. Every time someone barely knows me asks "How are you feeling", I can at least rest assured that this weight that I am carrying will be lessened for someone else someday.
Walking the balance sucks, and I am tired.