Don't Say I Didn't Warn You

So if you failed to heed my warning and came here anyway, you're probably one of those that won't be put off by the morbidity of the blog title. But look, I didn't say "news of my DEATH," I said "news of my DEMISE," and there's a big difference because "demise" doesn't sound as harsh as "death" even though as you can imagine, I've pondered death quite a lot these last few years. Also, as much as I enjoy ripping off popular writers to appear more profound, I didn't have the heart to diminish Mr. Twain's famous quote with my ramblings. God knows his writing is terrible enough without me piling on.

Thing is, after answering the question, "So how are you feeling?" and "So, what's happening now?" until I fear I will vomit on the next person who asks, I just need a place to post updates and share my thoughts. There's too much to tell and I need a place where it won't get lost between people requesting pig jewelry in Wastemytimeville on Facebook, and tweeting about taking their lizard to the vet (okay, that last one was me, but have you HEARD that story?)

I've also noticed that very few actually ask the more pointed question, "How do you feel about all this?" I can't tell if it's because they think that's too personal, or maybe because they are under the false notion that as long as I'm feeling okay today, then things must be okay.

I know the question comes from concern. The unspoken sentiment that everyone wishes there was something they could do. It's why I indulge the question and try to keep the answer as simple as possible. But the truth is, there is no simple answer. Do you mean "how am I feeling today," or "how am I feeling in general" or "how am I feeling about you"? You may not want the answer to one of those.

SO HOW ARE YOU FEELING?

I've felt better, to tell you the truth. The last two years have been a steady stream of feeling less than peachy. My disease, HCM (Hypertrophic Cardiomyopathy) generally has this effect, but usually over the course of a lifetime rather than two years. There's no question I'm headed for a heart transplant, but the logistics and details are less than simple. I'll address them in future posts. I'm sure that whoever you are, wherever you are, I did a really crappy job of explaining HCM to you, so here's my doc from Tufts in Boston. He actually knows what he's talking about.

Dr. Maron is why we're trying to relocate to the Boston area for the time being. He's the guy that has the experience and knowledge to walk an HCM patient through the transplant process (a rare event), but more importantly, can keep me alive until I can actually get a new organ. He's the rock star of HCM, and the most humble doctor I've ever met. His whole team is on top of this thing and I really believe they're the best shot I have of making it through this.

HCM (Hypertrophic Cardiomyopathy), is above all things a sneaky bastard. It rarely plays the same hand twice, and often switches decks entirely. It's what makes ERs a relatively dangerous place for me, and causes general cardiologists to scratch their heads a lot (either that or they all have lice).

So that's where we're headed, and I'm not sure how I feel about it. I mean, we're talking about a pretty bizarre scenario here, where someone else is going to die, and part of their body is going to be put into mine. How do I feel? My knee-jerk answer is, "Like I'm in an X-Files episodes. And not one of the good ones where Mulder finds out where Smoking Man is hiding the UFO. More like one of those "monster of the week" episodes where Mulder discovers a mad scientist sewing people's heads onto their pets.

Thing is, I've been a business owner, pastor, and stay at home, homeschooling dad, so I'm fresh out of tact and political correctness at this point. I need a place to vent my brain, and all kinds of strange stuff was flying around in there way before this transplant thing. Maybe my honesty can help someone else in a similar situation, or answer some of the questions. Maybe it'll just reveal what a nutjob I can be sometimes.

Either way, here it is. My blog about HCM, life, death, music, politics, and inevitably, Star Wars.

Off we go.