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OftenBen  ·  3605 days ago  ·  link  ·    ·  parent  ·  post: The preventable, inevitable death

Ok, quick (Or not so quick, after I type it all out) backstory about OftenBen then into opinion/meat of the post.

I was diagnosed with Hypertrophic Cardiomyopathy when I was three months old. At the time they called it Ideopathic Hypertrophic Subaortic Stenosis (I'll remember that my whole life. Sends the hospital staff for a loop when a 5 year old know his diagnosis and treatment better than they do) but basically what it means is that my heart is enlarged. Specifically my thickening is worst in my septum and lower chambers of my heart which means that I can't have as much blood in my heart at any given time as you normal folk, as well as some other issues. I tire out quickly, get short of breath doing any kind of 'normal' physical activity and could spontaneously go into cardiac arrest. I had my first (and so far only!!!) open heart surgery at 11, to remove part of the septum that was causing an obstruction to my outflow tract, had my first pacemaker placed at 14, and got my newest one at 19, which is supposed to last me well into my 30's.

When you grow up with THAT kind of Damoclesian doom over your head you come to terms with your mortality pretty quickly. When I was younger I was very Christian, and knew that, even though I would die someday, and probably sooner than most people, I would be unconscious when it actually happened and then I would be in heaven, no sweat. Then I went to college, smoked pot, tried to be really Christian for a while even though I was starting to have doubts, and then lost my faith entirely when I realized that people couldn't have the kinds of questions I did and keep their faith. That period of time, combined with some really fucked up shit with my family, got me a depression diagnosis and a SSRI perscription, during which I didn't think too much about my mortality, or anything really. I contemplated suicide for a while at my lowest point, and the thing that really stopped me from more than idly daydreaming about it was thinking about all the time, effort and money that had been put into keeping me alive thus far. Since stopping the SSRI's and being more honest with myself about what I actually DO believe, rather than what I WANT to believe, I've decided that for right now, I'd rather live. I could theoretically start a spiral into full blown cardiac failure at any time, but for now my prognosis looks pretty good for the next few years, medically anyway. At some point, I will no longer BE, so while I still AM, I want to have fun, and maybe accomplish some good before I go.

A while ago we had this thread about how we want to be remembered and I didn't have an answer then. I still don't have one, but I want to think that someday I will. Until the day comes when I am no more, I'll keep and treasure my pessimism, my anger, my sadness, and fear along with my hope, my love, my joy and my bravery to face each day, because they are so fully mine. I use my coming death as a reason to get something done now, while I'm still able to do so. Sometimes it feels like building a sandcastle below the high tide mark, but when the tide comes in, I'll be gone with the castle.