God, Part II

"(I) Don't believe the devil, don't believe his book

But the truth is not the same without the lies he made up

Don't believe in excess - success is to give

Don't believe in riches, but you should see where I live

I...I...believe in love" - Bono (God Part II)


This song has fascinated me from the first time I heard it, Bono's biting and desperate response to John Lennon's earlier song God that so bleakly insists that God is only "a concept by which we measure our pain." I disagree with Lennon's view because while true to some extent, it is overly simplistic. Bono's response illustrates the struggle we all face when it comes to knowing how things should be - how we should feel and what we should do - and what actually is, or what we experience to be true in our own lives. It's the struggle between the way we want to think about faith, spirituality, materialism, love - and the way we actually are. As with any great U2 song, Bono is conflicted. And we love him for it (or at least I do).

So many e-mails and responses to my last post; I think it needs a follow up to clarify a few things.

*Firstly, I want to say that in my last post, I'm not discussing MY faith at all - that's an issue for another time because it's complicated and very private for me at this point in my life. I have a lot of questions and struggles and I'm not really ready to put all that on public display at the moment. The issue I wanted to address was people telling me to have faith, or that they have faith, that everything will work out fine. My point was that no matter how much any of us want to believe that to be the case, the scripture itself doesn't guarantee that it will. The scripture itself promises "eternal glory" (as Siobhan so aptly pointed out in her comment on the last post) - but in this life, it promises suffering, pain, and death. That isn't just my take on the matter - if you subscribe to the Judeo-Christian theological framework, this is what the Bible teaches. My post was simply to point out that if you believe the Bible, you can't in good conscious hold the belief that "everything will work out fine" unless you mean "fine" in the eternal sense - as in, even if I don't survive all this, I'll be present with Christ. To have faith "that it will all work out" is to believe something that has never been promised to me - not by the Bible, The Universe, or anything else. Life is fragile, and tomorrow is not promised to us. I don't think anyone would disagree with that, no matter your belief system. We believe it because we have experienced it - who among us has not lost a loved one or seen life snatched away suddenly? It doesn't mean I expect things to end badly. It just means that "having faith" serves no purpose toward actual survival, because the Bible never promises physical survival (or for my non-Christian readers, the Universe, etc.). The only way to get around this fact is to cling to the heretical Faith/Wealth doctrine which is  based more on Western greed and entitlement than on scripture. And even if you believe it strongly, your whole life long, in the end, life has a 100% mortality rate.

*Secondly, I want to be clear that I'm not rejecting faith as a way to help cope with difficult situations. I wholly believe that it is very helpful for many people. I would never dream of telling someone *not* to have faith that things will work out well for them. At the same time, I want to be clear that so far, empty promises of "things working out" have been of no comfort to me. Most of the time, I get the feeling that people are trying to convince themselves, more than trying to reassure me. This may be painful to hear, but it's something we all need to be reminded of when comforting one another. It's not the patient's job to reassure or comfort those around him/her. It's not that I don't care about other's worries or anxieties, I really, really do. It hurts me to see the expression on the faces of friends and family as I explain what is happening here. I want to comfort them. I believe there's a give and take, and I certainly don't want to be fussed over and coddled. Let me offer this observation: many people have prayed over me, blessed me, and shared scripture with me over the last 12 years. I don't mind this in the least, but in almost every case, I was never asked if this was something the person could do for me. I love that they care enough to do something that they think will be a comfort to me, but no one ever asks, they just assume. It's both touching and amusing because I realized long ago that they are doing this to comfort themselves. It's taught me a lot about my efforts to comfort other people in times of distress.

*Thirdly (and finally), I do however derive all the comfort and assurance I need from day-to-day life. Christie, Rich, and Brennan are life affirming to me. Their zest for life and laughter give me great hope that everything will be okay. I am uplifted and comforted by music that transcends the temporal concerns of this life - lyrics written by men like Lennon, Wonder, Bono, Jon Anderson (Yes), Neil Peart (Rush), and so on. Good food and wine have become to me a celebration of life itself. A well-told story, be it in a novel, television show, or XBox game is cause for embracing life and the timeless tradition of sharing hopes, fears, and dreams through narrative. These things, at least to me, are far better, richer, and more life affirming than either assurances that it will all work out, or promises of eternal rewards. I know - some of you cringe when I say that, but I'm just being honest. I wouldn't trade watching my kids grow up for anything - temporal or eternal. I suspect most people would.

I cling to hope. My favorite line in this song reads:

"Heard a singer on the radio

late last night,

said, 'I'm gonna kick the darkness

'till it bleeds daylight."


Here's the whole song, a wonderful dichotomy of what should be and what is. I share Bono's confusion about this, and that's just fine. When I start saying I've got it all figured out, I'm more sick than heart failure could ever make me.

God (Part II) - U2



(For John Lennon)


Don't believe the devil

I don't believe his book



But the truth is not the same

Without the lies he made up


Don't believe in excess

Success is to give

Don't believe in riches

But you should see where I live

I...I believe in love


Don't believe in forced entry

Don't believe in rape

But every time she passes by

Wild thoughts escape

I don't believe in death row

Skid row or the gangs

Don't believe in the Uzi

It just went off in my hand

I...I believe in love


Don't believe in cocaine

Got a speed-ball in my head

I could cut and crack you open

Do you hear what I said

Don't believe them when they tell me

There ain't no cure

The rich stay healthy

While the sick stay poor

I...I believe in love


Don't believe in Goldman

His type like a curse

Instant karma's going to get him

If I don't get him first

Don't believe that rock 'n' roll

Can really change the world

As it spins in revolution

It spirals and turns

I...I believe in love


Don't believe in the 60's

The golden age of pop

It glorifies the past

While the future dries up

Heard a singer on the radio late last night

He says he's gonna kick the darkness

'til it bleeds daylight

I...I believe in love


I feel like I'm falling

Like I'm spinning on a wheel

It always stops beside a name

a presence I can feel

I...I believe in love

Thank You Fallenttinme Be Mice Elf, Agin

Now for something a little lighter: Sly and the Family Stone is one of the first bands (along with the Jackson 5) that I remember seeing on live television. I'm so glad my dad was a Willie and Waylon fan and introduced me to Herb Alpert, Barbara Mandrell, Ray Stevens, and so many other artists. But I also have a deep appreciation and love for Soul music, and in my opinion S&FS is one of the greatest bands in history. Larry Graham practically invented slap bass. It was the perfect combination of rock, funk, and R&B. I remember seeing this performance at a friend's house when I was about 7 or 8 and the song stuck in my head until I was old enough to seek out their cassettes for myself. It was one of those defining moments that opened up an entire new world to me and made me unafraid to enjoy "black" music later in life. I can't imagine never listening to Michael Jackson, Stevie Wonder, Public Enemy, BooYah Tribe, The Commodores, Parliment, Luther Vandross, Aretha, Mary J. Blige, Missy Elliot, TLC, and so many, many other artists that have not only tickled my musical palette, but broadened my worldview. 

So here's a song for all of you who read regularly - my thanks for caring enough to pay attention. Take it away, Sly!

P.S. That's the legendary Sid Page on violin, and though he's in the background here, Larry Graham remains my all time favorite bass player, right behind Chris Squire (from Yes). 

The God Thing

I honestly don't find much comfort in the idea that God (or the Universe, or Fate, or the other myriad things I've been told to trust in) is in control. The thing you may have noticed about all these Powers That Be is that humans never get invited to the board meetings.They all have their own agendas which may or may not include keeping me alive. Think about it - you can't really say, "God's going to bring you through this," to me, any more than you could have said it to the 3 dozen people who died on a transplant waiting list this year. It betrays a rather small view of God, and a rather over-inflated perception of just how important I am in the Grand Scheme Of Things. Even the Bible is filled with numerous accounts of God wiping out entire nations for the sake of His plan. My friends in other countries are nodding in agreement, while the American readers are thinking, "But that could never happen to US. We're AMERICANS!" Fact is, no matter what your belief system or theological framework, when it comes to the decisions made by The Powers That Be, none of us hold stock in the company.


In a movie or video game in which the main character faces mortal danger, I can usually assure the kids that nothing will happen to him because, hey, that's the main character. If he dies, there's no game. There's no movie. There's no TV show. So he can't die. (Unless he's Harry Potter in which case he can die. Because it only makes him stronger when he comes back to kick some Death-Eater booty. And there's that Jesus thing too).


If only that were the case in real life. Though I may be the main character in my own story, and even in my kid's story until they're older, I'm certainly not the center of any universe anywhere. It took many years for me to be convinced of this, but I'm pretty sure I'm not. We all like to think that we're special, that it will work out for us. But if everyone is special, then where are the people that it doesn't work out for? See, someone has to make up that percentage that dies while waiting. Or that dies due to complications. Or a bad match. Or infection. Or rejection. It has to be someone. Just so long as it's someone else. But that percentage that doesn't make it? It's made up of people whose friends and families want to believe that they are also at the center of the universe, that God will make an exception for them, that Fate has more for them to do. This is the story of every surviving spouse, child, friend, and parent of someone who dies waiting for a transplant, or from cancer.


I'm not trying to be morbid. I've actually found that being realistic with myself about the possibilities and my tiny role in the Grand Scheme Of Things really helps me to have a positive outlook on the situation. Some have criticized me for not having more faith. What they really mean is that I should believe - or have a stronger belief that everything will be okay. The word "faith" as it's used in the New Testament is rooted in the Greek word "pistis." I won't digress into splitting linguistic hairs, but the general idea is that faith is "belief in the direction of evidence." I think that's a great way to approach faith. It's not simply a Pollyanna, vacuous belief that everything is going to come up roses. The idea is that when we see ample evidence that something is true, we should trust that it is. 


But that's exactly the reason I honestly don't think faith is going to change a single thing in terms of my outcome. There's a prevailing confusion in many Christian quarters that we are able to speak things into existence if he have enough faith. Never mind that this is a horrific butchering of both the language and context of the word and the writer's intention, this hermeneutical horror is perpetuated by men like Kenneth Copeland, the Oral Roberts Family crime ring, and a slew of others who make their money by preying on the sick and the old. In other religions it's known as "positive self-talk" or "positive verbal energy." This is closely tied to the so-called "prosperity gospel" in America where folks have been duped into believing that being rich and healthy is possible for anyone who believes hard enough. Hello, Mr. Copeland? The 99% would like a word with you. People who believe this stuff aren't bad - they're just wrong. Unless they're the ones teaching it to get rich. Those are the ones who are most definitely both bad and wrong. 


Anyone with even a remedial knowledge of history or religious literature knows that an overwhelming majority of the evidence speaks to death being part of life, God (or the gods, if you prefer) getting on with their plan regardless of human casualties, and nature being red in tooth and claw. With a few exceptions, the scope of Biblical evidence that "everything's going to be okay if you just have enough faith," is mighty slim. And the context of those exceptions are evidence that exceptions are made only when they serve a pivotal historic or theological purpose. I'm highly skeptical that I meet any of that criteria in the Grand Scheme. 


I studied this theology for nearly 20 years and I'm telling you - there isn't a single shred of hard evidence that having more faith affects anything. Yes, I know - your brother's niece's cousin once worked with a guy who's girlfriend was cured of warts by putting her hand on the TV with Robert Tilton and believing really hard. The only thing that proves is that our justice system is flawed because Tilton isn't locked away in a deep dark hole with other thieves and con-men. 


There's a real problem among people of faith when it comes to the word *evidence.* No matter what religion they claim, they seem to not understand the difference between anecdotal evidence and empirical evidence. But even in matters faith, the anecdotal evidence reveals that "speaking your own health" and positive self talk is not much more than wishful thinking. People still get sick and die, even those who believe strongly that they won't. 


But I don't blow the idea off altogether. There is significant anecdotal evidence that faith helps us to heal faster or even have a more positive outlook. I get that. All I can say is that believing there's a grand purpose for being sick or possibly having my life cut short brings me absolutely zero comfort. I can say with certainty that I care way more about seeing my boys get married and growing old with my wife than I do about Anyone or Anything's stupid Grand Plan or anything "working together for the good" of it. I'd rather know my grandkids, thanks. 


Here's something else I know - in my long, excruciating struggle with faith and Biblical theology, I could never digest the idea that I was unworthy of this plan, or of God because I love my father, mother, and son more than I love God (Matthew 10:37). I do love them more. I can't help it, because I'm wired to do so. It begs the question that the chamber pot is warned not to ask the potter: "Why have you made me thus?" (Romans 9:20). I will shout from the rooftops that I love my kids, wife, parents, brothers, and friends, more than I will ever be in love with a Divine Plan. If not because it's good, then at least because it's true. And lying about it for the sake of appearing spiritually mature or wise only puts me in the same camp with Kenneth Hagin and Benny Hinn, who proclaim their love of God to the world, but actually love their money more. 


In conclusion, if you want to put your hand on my blog page and send me money, I won't stop you. But don't do yourself or me the dishonesty of believing that some magical energy is going to fix all my ails. I welcome anyone's well wishes, prayers, laying on of hands, and questions of concern. Just understand that those things are possibly more for you than they are for me. My magical energy are things I can touch, hear, smell, taste. It's my kids laughter, my wife's smile, My Life by The Beatles, my friends, my family, a good glass of Pinot Grigio, fluffy cheesecake, and living simply, and it's far more than enough.  At least until I learn how to use The Force.

Minnie Driver Movies and Other Nasty Surprises

I love Return To Me. I won't spoil it for those who haven't seen it, but it's a great film starring David Duchovny when he was still Fox Mulder, and Minnie Driver before she decided to become trendy and get an eating disorder. Minnie's character has a heart transplant, which becomes a major plot point later in the story. I'm not a huge fan of non Kate-Hudson chick flicks, but I really like this one.

But it's just that - a flick. It's not true. Neither is ER, Grey's Anatomy, House, or the dozens of other movies and tv shows that treat heart transplants like a magic bullet or one of those healing stations in Half Life. Heart transplants are much, much more complicated. Since the entertainment industry always gives you the best case scenario, I feel obligated to give you the worst. Because I'm like that. I'm a giver.

Since being told I needed one in Boston almost 2 years ago, I've seen a few other doctors, some of them heart doctors. When I explain my diagnosis to them, they typically put on their grim reaper outfit and start telling me all the horrible things that go wrong with heart transplants. They actually treat me as if the transplant were MY idea, and it's their job to talk me out of it. This is mostly because people in the medical field know the truth - a heart transplant is an incredible, life-saving miracle that is almost too good to be true. But they know that many times it doesn't go like that. It's easy to look up "heart transplant" on wikipedia for fairly accurate information, but here's a quick run-down of the problems with the "magic bullet" theory:

*Good matches are based entirely on chance. A ideal organ would be one that's the same size as my current heart. There are other criteria that it would meet (obviously - blood type, age, gender, etc.). But at the end of the day, you get the heart that's closest to a match. If the match isn't very good, it can cause all types of problems, either sooner or later. But beggars can't be choosers, even beggars who need a $787,700 procedure (no, I'm not joking).

*Although they've gotten better in recent years, transplant patients have to take massive amounts of immuno-suppressant drugs for the rest of their lives. As in - forever. It's very confusing for your body because it's just trying to do its job and reject the foreign tissue that has suddenly appeared in your chest cavity. The meds can make you really, really sick. This is HUGE reason why pre-transplant psych-evaluations are important. Apparently, these drugs can make you feel even worse than you did before the transplant, and there have been problems with people simply opting to not take them and just die, rather than continue feeling so sick. You can imagine the expense of such drugs as well, being as the pharmaceutical companies hike the price exponentially for them. It's part of their You Have To Pay What We Ask Or Die Ha Ha Ha Sucks To Be You program.


*From Wikipedia and the American Heart Association - survival rates for heart transplant patients:

• 1 year : 88.0% (males), 86.2% (females)
• 3 years: 79.3% (males), 77.2% (females)
• 5 years: 73.1% (males), 69.0% (females)

Those are arguably good expectations for such a radical procedure, and the fact that you would die without it. The percentages start to decrease as the years increase. It looks like average life expectancy at this moment is somewhere around 15 years, but this is all highly dependent on your individual circumstance. In my case, even 15 years isn't very long when you consider Richard is 10 and Brennan is 6. At best, it would put me approaching death during their college years, possibly when they're getting married and having kids. This means I'm likely to miss my chance at being a grumpy old dude who yells at kids to pull their pants up, so I've gone ahead and started doing that now. It's better than nothing, but even Dr. Maron tells most otherwise healthy people my age to expect 5-7 years. Which brings me to the next obvious point:

*Re-transplantation. Once the first transplanted heart begins to fail, it is technically possible to be transplanted a second time. The problems with this are numerous as well. The Immuno drugs are extremely hard on the kidneys and liver, though that may change over time. Any other medical problem or illnesses can make you ineligible as a transplant candidate. 

*Risks of infection, food-borne, air-borne, or otherwise are very, very high - because you're taking drugs to suppress your immune system, right? So you have to remain very isolated for quite a while afterwards. Most patients have at least one episode in which the body tries to reject the new heart and lands you in the hospital. It's not uncommon to be hospitalized several times due to rejection. 

See? It's all unicorns and lollipops here at News of My Demise. There's other stuff I'm forgetting but like I said - this is the stuff you never hear. And it's why I get a little irritated at the way movies over-simplify the whole thing. Despite all the crap that can go wrong, I'm counting on things going well, on the fact that I've got a lot of motivation to survive, the fact that I'm young and otherwise healthy, and the fact that I'm going to be treated by the best doctors in the country.

Hopefully this explains why I want to wait as long as possible to have a transplant. Dr. Maran says, "It's always better to keep your own heart for as long as possible. After all, it's your heart." But waiting too long is an obvious problem as well. 

Now, I know this all sounds doom and gloom, but I don't feel that way at all. I did at first, and I go through little periods of panic from time to time. But think of the big picture. How amazing is it that something like this is even possible to begin with? That the technology improves every year? When I asked one of the transplant docs about re-transplantation, he waved the idea off and said, "Oh, by that time we'll be using completely artificial hearts. No problem," as if this was a no-brainer. Who knows how long that will be? 5 years? 10?

I'm not afraid of being sick either - I've become an expert at it. I feel sick right now, and you couldn't even tell, could you? HA! See, that's how good I am. Being sick is the part I know I can do. I sat through Transformers 3 and once watched an entire half episode of Dancing With The Stars. I can do this. It's the not knowing that drives me crazy. How's it all going to turn out? What percentage of this, that, or the other am I going to fall in this time?  I like to make plans and we simply can't. So we prepare for eventualities, try to make the best guesses we can, and go on with life. 


When it's all over, maybe I'll get to meet David Duchovny or better yet, Minnie Driver. I'd like to buy her a bacon double-cheeseburger.

P.S.

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Are You Stupid Or Something?

Why, yes. Yes I am. I should have (in the words of one person) "just gotten a heart transplant a long time ago," so that I wouldn't have had to go through all the problems of the last 12 years. Apparently, this person thinks life is like playing the original Doom. Shot in the face multiple times with a flak cannon? NO PROBLEM. Run across this little white first aid box and ta-da! All your ailments are magically healed.

In this magic world, apparently anyone with chest pain can simply walk into a local clinic and say, "I'd like a heart transplant, please." A nurse will then usher them into a show room where they can pick out the heart of their choice, have it implanted (BY MAGIC), go home, take some pills, and compete in a bike marathon the following day.

However, in the real world, people are very fond of their own hearts, and also the hearts of their loved ones, even after they are recently deceased. You'd think it goes without saying, but I've actually had to remind a lot of people that (hang on for this shocker): DONOR HEARTS COME FROM RECENTLY DEAD PEOPLE. Unless Wal-Mart is selling them now, which frankly would not surprise me. Think about the way this affects those who need that donor heart for a moment.

*There is a severe shortage of donor hearts compared to those who need new hearts

*Hearts are not universal because you can only receive a heart that is your size, works with your blood type, etc. Since there's no Heart Quickie-Mart, you have to wait for this exact type of heart to become available. Again, let me emphasize - hearts only come from recently dead people. There is no heart bank, no adoption center, no vending machine.

*Because younger hearts tend to be more healthy and last longer after transplanted (all other things being equal), the recipient holds out morbid hope that they will receive the heart of an 18 year old who died in a motorcycle accident, rather than that of a 60 year old who died from eating too many potato chips. Because when you receive a new heart, you also receive any problems, genetic or otherwise, that come with it. In a future post, I'll explore the psychological ramifications of knowing that someone's going to die, preferably a young healthy someone, in order for me to live. I haven't quite worked it out yet but so far it involves a lot of uncontrolled sobbing and a bit too much red wine from time to time.

*Since they are in such high demand, there is an extremely strict, national criteria that must be met before an individual is considered a candidate for a new heart. This not only involves the urgency and severity of your medical condition, but your dental health, financial ability to afford post-transplant meds, psychological state (I know, I am SO screwed), your relationship with your family or support system, diet, motivation to survive, and on and on and on. Donor hearts are precious, both to the medical community and the family of the donor. Everyone involved wants to be as confident as possible that it's not being gifted to a suicidal meth addict who won't take the meds - because if that guy doesn't take it seriously and the transplant fails, the heart is wasted. Which means someone else who would have cherished it probably died while waiting for a new heart.

I could go on and on. There is an organization called UNOS that transplant centers use to sort through all this. One of the reasons we want to be listed at Tufts and Mass General in Boston is because the cardiology teams there have experience moving  HCM patients through this battery of tests, even though we don't meet the traditional criteria set forth to receive a new heart. The guidelines are built for people with "normal" heart failure, and mine is anything but normal.

When my time does come, if I make it to the top of the list (which is a whole 'nother post, because the list itself is necessarily complicated), it won't be by appointment. It will be after someone else's unexpected death, and rushing to the hospital if the heart is the right "fit." This scenario will repeat itself possibly a dozen times because when you're second or third on the list, you're called to the hospital just in case the person/people above you on the list can't receive the heart for whatever reason this time. So you leave with nothing except crushed hope and the prospect of trying to survive until the next time. See why they do a psych exam at the front end?

The other reason we've not rushed into this just yet is because when I do get listed, my problem isn't nearly as advanced or severe as many other people on the list. My condition also may not change for some time (who knows?). So likely, I will float at the bottom of the list until I worsen, then I will move up. Obviously, the transplant team nor UNOS is going to allow someone to be transplanted who doesn't need to be yet. The demand is too great. The tricky part is being just sick enough to be considered urgent, but not so sick that you can't hold out until the right donor heart "becomes available." It's a bit like Shuffleboard, except the puck is your life.

So that's the "before." Next time we'll discuss "after," the grim reaper, and Minnie Driver.

Thanks For All The Fish

Fish. It started with fish.

I was diagnosed in 1998, went through a few years of mis-information and over-medication, then in 2003, Dr. Maron (in Boston) put me on a really good regimen that made me feel better than I had in a long while.

Whereas most HCM progresses gradually over a patient's life, mine moves in "stair-steps." I'll progress suddenly and rapidly, as I did with the onset of symptoms 1998, then suddenly "plateau" for long periods of time. The years between about 2000 and 2008 were a long plateau. Nothing changed on my echocardiogram, no increase in the thickness of my heart muscle, no change in my ejection fraction, or anything else to indicate that the HCM would get worse. Other than some stress-induced problems in 2005 (a story for another time), it looked like I was going to sail through life on a hefty dose of medications and no further complications.

I remember the exact "uh-oh" moment. It was the fall of 2008 and Christie had taken the kids somewhere for the weekend (Little Rock, Branson?) and left me at home. We lived in Bentonville, we were both in school and I had tons of papers and homework to catch up on. Plus I wanted to finish up a draft for one of my novels. I didn't want to waste time cooking, so I picked up a few of those TV dinners - not the microwave ones, the kind you put in the oven. I had been eating really healthy - homemade fruit juice, yogurt, and lots of raw veggies - and working out several times a week. So the TV dinners were a quick, nasty solution to my time crunch.

After eating the first sodium-laden fish dinner, I sat at the computer unable to work. Waves of nausea swept over me unlike anything I'd experienced before. I thought I had food poisoning, but as the night went on, I realized the pain was coming from my chest, not my stomach. It's tempting to think my body was reacting to the faux-food to which it was not accustomed, but it's clear to me now that my HCM simply chose that moment in time to progress again. Salt, stress, trans-fatty acids, exercise - HCM sneers at all of these things, then ignores them. As far as the research has discovered, HCM is on its own schedule and can't be hurried along or held back by anything external. This is hard to wrap our brains around because we've been bombarded with the idea that exercise and Cheerios keep your heart healthy. They probably do, for people with normal hearts. But you can't make HCM better with exercise or rest, and you can't make it worse with fried fish and beer. So really, the fish had nothing to do with it. That was just a clever title to make you read this and HERE YOU ARE.

Remember when I said that HCM is sneaky? It's unpredictable and inscrutable too. Most HCM literature mentions the risk of sudden death, but that's not as much of a danger now that we know a little more about the disease. The solution usually involves medications and, in the case of patients who are truly at risk for sudden death, implant devices such as defibrillators or pacemakers. Devices shock the heart back into a normal rhythm before anything really bad happens. In worst case scenarios, heart surgeons perform a myectomy or septal oblation in which they literally cut or burn away some of the stiffened heart tissue to prevent blockages in the heart and make its job easier. Any of these methods can typically "fix" the HCM symptoms enough that the HCMer can live a normal, if less than active life.

We've been told that HCM makes up 5% of all heart disease in the world's population. Of that 5%, I am part of the "less than 1%" for whom HCM progresses to the point where none of the above work. I have no electrical/disrhythmia problems, so implant devices do nothing for me. The only solution at this point is transplantation. It's so rare in fact that on both the HCM wiki article and in the HCM handbook written by my doctor's father (Dr. Barry Maron), it warrants one single sentence.

Aggressive HCM like mine presents considerable danger because on any given day, there can be progression, or loss of heart function - meaning that over time, the heart muscle becomes a little more stiff and inflexible, and is no longer doing its job. On top of that, because it is so rigid, it makes it that much harder for the remaining healthy muscle to do its job properly. A heart MRI last year shows that over the course of 2010, my HCM progressed to the point that I have very little functioning muscle left. Fortunately, I have "plateaued" again since that time - but who knows when the next big stair step will be? It's possible the rest of that muscle will lose its function very quickly, or that it could take years. That makes it really hard to plan much of anything, and I'm sure we seem like real flakes sometimes. But when your health changes so randomly, all you can really do is adapt and hang on.

Edema is the other serious risk. After the fish, I noticed that I suddenly felt very heavy. I never weighed on the scales because I've been skinny my whole life. I found that I had no energy to work out, food didn't taste good anymore, and I was developing a beer belly, despite never drinking beer. I started checking out the scales - I'd gained almost 20 lbs. in just a few days. My local cardiologist in Bentonville, AR told me I was just getting older and fatter. I started having searing pain in my lower back - so bad that Christie had to come home from school to help me get up from my desk chair one day. I suppose this was my liver and kidneys trying to deal with the massive amount of water weight I'd taken on. As the disease progresses, diuretics won't work much at all, and there is danger of flash-pulmonary edema - drowning in your own fluids. In the ER, there is the danger of being given too much fluid or too much diuretic, which can collapse the heart vessels causing immediate and lasting deadness.

The problem is that all of this looks very much like congestive heart failure to even an experienced cardiologist. CHF is so common in HCM patients that I've had doctors correct me when I tell them I'm in diastolic heart failure. They check for water on my ankles and ignore the tire around my middle. Even at an HCM clinic in St. Louis, Missouri, I was told that my cardiac output was fine and I would never need a transplant. It's exhausting to spend so many years knowing more about your disease than the doctors who are treating you.

This is all very House, if you know what I mean. Everyone thinks their medical problem is unique. So much so that doctors expect patients to act this way. I've had a lot of difficulty accepting just how rare my condition is. I don't even fit in with the HCM community, a community that identifies itself by the obscurity of its disease. This has driven us finally to realize that the cardiac team at Tufts (in Boston) are pretty much the only people who have seen anything like it before, or have the resources and knowledge to deal with it properly. Even then, I'm different from the other HCM transplant patients. Heather Cote' the transplant coordinator, took the time to go through the transplant handbook and point out all the things that didn't apply to me. It was a lot of stuff. If I hear the word "unique" one more time I might throw someone through a plate glass window.

So there's no community, no handbook, no one to really talk to about how this thing will go and what to expect. I'm sure there's someone out there, but it's very needle in a haystack.

I share all of this because, even though our families are probably sick of discussing it, many of our friends don't understand why Boston, why now, why so suddenly. Wasn't everything fine just a year ago?

The other bullet ricocheting around the room is the uncertainty of the next progression. We're headed for Boston to get on a transplant list, but what if the disease has decided to plateau for the next 8 years? I'll sit at the bottom of the list I guess.  All I know is that when I have the really bad days, I feel like I might be dying right then. I know that will happen more often and more intensely as my heart wears out, so I'm getting on a list now.

Still, getting a transplant is not the cure all it sounds like. I fully expect it to be an awesome new beginning, but the whole thing is very different from the way it looks on Grey's Anatomy. Actually, humans and life are very different from the way they look on Grey's Anatomy, but I digress...

Next post: Transplants, and why movies about them are stoopid.

100 Things

Because Stacy put it in my head to do this last summer, and because I'm procrastinating doing any real writing right now:

100 Things You Probably Don't Know About Me:

1) I'm a bit of a health food nut. I eat lots of homemade yogurt, love edamame and natural fruit drinks.

2) I worked out three times a week, every week from 2006-2009. I know. I have nothing to show for it.

3) I am a HUGE Frank Sinatra fanboy. Not just his music, but his movies too.

4) I actually don't care for science fiction. I like fantasy, which is what attracts me to things like Star Wars, Firefly, and Battlestar Galactica - but it's the mystical elements I like. The setting is irrelevant.

5) I listened exclusively to Christian rock until I was almost 20 years old.

6) I once played drums and was the primary songwriter for a Southern rock band. Yes, like Lynyrd Skynyrd. Yes, I apologize.

7) If Christie hadn't thrown them away, I had several awesome pair of Hammer pants. Because it's ALWAYS Hammer time.

8) I was the only white guy in the 100+ member gospel choir at Memphis State University during my short time there. And it wasn't one of my classes.

9) I can't name a single song that's been played on the radio in the last five years. Nor do I want to.

10) I watched the first season of Desperate Housewives last year and I liked it.

11) I know the names of more Norwegian Death Metal bands than I do names of U.S. Presidents.

12) I love to try new pasta recipes.

13) I once said to a man, "I don't care if all the TV's are melting. Give me back my mop."

14) I once got 2 speeding tickets 15 minutes apart. Cue Sammy Hagar.

15) I once earned 7 speeding tickets, each in a different county in Arkansas, in 4 months time.

16) I have read every Stephanie Plum novel by Janet Evanovich up until number 13. They were good.

17) I read more children's books, specifically middle-grade fantasy, than anything else.

18) I think Ellen DeGeneres is still hilarious.

19) My favorite TV show is The Wire.

20) I had/have a crush on Amy Grant. Yes, the Baby, Baby Amy Grant. Christie knows, and ridicules me accordingly.

21) The only thing I've used a guitar for in the last year is to learn to play Blackbird by The Beatles because it was bugging me that I didn't know how.

22) Jimmy Buffet bores me to tears.

23) I'm good friends with Ben Moody who was the founder of Evanescence, and produces albums for Kelly Clarkson, Chris Daughtry, and Avril Lavigne. He also writes for Carrie Underwood and Celine Dion.

24) I'm not an Evanescence fan per se, nor have I talked to Ben about music since he produced some of my music back in 2002.

25) I read to Brennan and Rich almost every night before bed.

26) I have never played Halo or Call of Duty. I am a game snob.

27) I snore.

28) I used to make fun of bloggers, tree-huggers, and libertarians. Now I are one.

29) I would probably vote for Mike Huckabee

30) I would probably vote for Barak Obama.

31) I spent three years in Northern Italy in the early 80's when my dad was assigned to Aviano Air Force base.

32) I am a proud Air Force brat. The Air Force was awesome.

33) I was born in Las Vegas, Nevada.

34) I have never gambled.

35) I used to own a floor cleaning company.

36) I once led a friend into a Circle K on a dog leash at 3 am. No, I am not gay.

37) Before the RIAA came down on Napster, I downloaded music like I was going to be deaf in a week.

38) I will defend Kip Winger to the death. TO THE DEATH!

39) I think Stevie Wonder and Willie Nelson's voices are just about the most beautiful sounds on this planet except my kid's laughter.

40) I buy cars based on the CD/.mp3 player.

41) I hate shopping for cars because I just don't care. It's like buying a wrench or a toothbrush to me. As long as it gets me from point A to point B and plays my Jellyfish CD's while I'm in transit, it could be the Oscar Meyer Wiener Mobile.

42) My dad has more integrity than any other person I know.

43) I strongly suspect ballet is just a matter of being able to stand on your toes and wave your arms around for a long time. At least that's what I zzzzzzzzzzzzzzzzzzzzz........................

44) I once talked a drunk guy out of shooting his teenage son, while I was in the room.

45) I've been kicked out of four pastor's offices and three churches. Proudly.

46) I've slept in a van so many times I lost count.

47) I can completely replace a florescent light ballast in under 2 minutes flat.

48) I'm not exactly sure how wall anchors work.

49) I have the lyrics to the first four Public Enemy albums memorized. WANNA TEST ME, FOOL?

50) Most of my best friends are married women.

51) My mom could have been a professional bowler.

52) I taught myself to read Greek.

53) I couldn't find the carburetor if you held a gun to my head.

54) I've had restless leg syndrome almost every night since June of 1998.

55) Porcelain dolls and clowns freak me out. They freak me out bad.

56) My guilty pleasure is Captain D's. The greasier, the better.

57) I built my last computer.

58) When the new Van Halen album comes out, I will be unavailable that day.

59) I'm more scared of the foley catheter than the heart transplant. Seriously.

60) I have written three complete novels, and have two more in the works. I send queries to agents and publishers several times a month, but the likelihood of selling a book in this economy is about the same as Milli Vanilli making a comeback. Unfortunately, neither is a remote possibility.

61) Walking up stairs or inclines makes my eyeballs feel like they're going to pop out of my head.

62) My wife accomplishes things not possible for ordinary humans.

63) I like reading instruction manuals for games I have no intention of playing.

64) I read liner notes to CD's I have no intention of listening to.

65) I'm an absolute skeptic, but love stories about paranormal experiences.

66) I waited in line over night for tickets to Star Wars I: The Phantom Menace.

67) I have never felt so betrayed by another human being as I do by George Lucas.

68) I took a watercolor class with women in their 60's. I sucked.

69) I don't get Elvis.

70) Most of my worldview is derived from The Hitchiker's Guide To The Galaxy. You probably think I'm kidding.

71) I can read music, but I find it ridiculously tedious, and have to force myself to teach Rich and Brennan proper notation when doing piano lessons.

72) Despite struggling with math in school, I really enjoy algebra and intend to work all the way through the Calculus lessons on Kahn Academy.

73) I once got sent to the principals office for gratuitous jiggling of jello.

74) I worked in the cafeteria my first year of high school.

75) I've had a total of four (count 'em, 4) bosses who were fired for embezzlement.

76) Christie and I have been married 20 years in April. We have moved a total of 10 times, not counting our travelling moves.

77) I can pack a house like nobody's business.

78) I make a mean humus dip.

79) I played in a church band with Mike Huckabee for three months. He's a really good bass player, and not a bad drummer.

80) I've had to utter the phrase, "Don't hold the lighter that close to the gas tank. You'll set your bike on fire and blow up my truck." I also once set my truck on fire with a blowtorch. Different story.

81) In 1997 I almost killed myself because I was in a closed space with a leaky propane tank valve.

82) I became a drummer to get out of P.E. class in the 7th grade.

83) I once camped out at a music festival with the guys from P.O.D.

84) A deranged cop once threatened to kill me and my family if I didn't make his wife go back to him. FUN TIMES.

85) I love Motown.

86) I think the drug war is pointless. There are hundreds of other ways to get people off drugs that have nothing to do with laws, jails, or police.

87) There is no substitute for cheesecake

88) I quote Friends (the TV show) at least 5 times a day. Could I BE any more cliche?

89) I'm a cat person.

90) I'm a fiercely loyal friend if you are equally fierce.

91) I'm allergic to Courduroy and mayonnaise. One gives me a nose rash, the other makes me gag involuntarily. So no courd and mayo sandwiches please.

92) When I'm done, I'm done. Usually.

93) I think Michelle Bachman's (and some of the Tea Party's) nationalistic worldview is probably the most dangerous thing in the history of American politics.

94) Michael J. Fox will always have my attention.

95) As much as I love Tim Burton, I think the Batman thing was a bad, bad, bad idea.

96) I think Nirvana was simultaneously the most important, and yet the most terrible band of my generation.

97) Buffets give me the willies.

98) Iron Maiden. 'Nuff said.

99) Something about not knowing brings me great comfort.

100) If you read this far, you really need a hobby. One more thing you don't know...lemme see...I have an internal compass that always keeps track of which way I'm facing. If I don't know this at any given moment, I feel extremely disoriented and vulnerable. I have no idea why.

Music Spotlight: Dream Theater

I grew up listening to country music, thank God. I was considered a valuable asset in most all my music endeavors because I learned how harmonies and vocal phrasing works from greats like The Statler Brothers, Willie & Waylon, Barbara Mandrell, and Alabama. Some of you threw up a little in your mouth when I said, "Statler Brothers," but forward this video to the 2:06 mark and tell me the harmonies aren't absolutely sick:

Also, Johnny Cash introduces them, so whatever other arguments you have are rendered automatically invalid. When the grunge movement hit in the early 90's I started hearing these crazy harmonies again, but in a different place (start listening at 0:52):

There's a complex vocal thing going on in both of these instances that utilizes diminished 7ths, 9ths, and sometimes something called "the devil's triad" which makes the harmony sound slightly "off." I discovered that I had an instinctive grasp of how this worked because of growing up on The Statlers, who probably used it more brilliantly than any group before or since. Alice in Chains made it a signature of their sound. The same tools, different contexts.

I had spent the intervening years listening to heavy metal, mostly because of Van Halen, but also a slew of Christian rock bands like Petra and Stryper. The early 90's saw an explosion of experimental bands like King's X, Jellyfish, and Soundgarden. I started learning to appreciate music that was well-played, regardless of the genre. It's why my CD collection has an extensive discography of both Bruce Hornsby and Iron Maiden. The Beatles and Rush belong together because they both make music that sparks my imagination and makes me listen.

One early 90's band in particular blew my mind because they looked like a heavy metal band, but the music they played was more complex than anything I'd ever heard. It was an assault on the senses at first, almost too dense to appreciate, but something about it hooked me.

Dream Theater blended metal, jazz, pop, classical, and rock together into a mish-mash I later learned was labeled "progressive rock." This led to my discovery of many other "prog" bands like Queen, Rush, Yes,  Spock's Beard, Symphony X - all who share a similar affinity for complex arrangements and instrumentation, though none of them sound alike. I feel like I fit in with the "prog" community because they appreciate talent in musicians, well thought out and played songs, and have no problem paying attention to a song that might happen to last 20 minutes. It requires an investment in the art of music that defies the "pop" mentality of 3.5 minute, trite, disposable stuff you hear on the radio lately. It also allows an artist to jump from country to heavy metal if the song calls for it - Queen did this most famously. It is, to me, the definition of musical freedom of expression.

I finally got to see Dream Theater play live on Thursday, and meet their guitar player, John Petrucci. He was very generous as we discussed some of his guitar work and the band's new drummer. I've been a fan of these guys for 20+ years, so this was a great moment of culmination for me, given how much I respect what these guys do, and especially what they represent. They have survived this long by defying the odds, taking an unconventional path, and making the necessary sacrifices to do it their own way. Frank would be proud.

To see what I mean, listen to these two very different songs the band plays, shifting effortlessly from one mode to another. Their commitment to excellence as musicians gives them so many more tools to use than most other artists out there who survive on 4-5 chords and a few pat formulas to write with. Note: you've got to commit almost 10 minutes to this first song - another thing I like about Dream Theater. They don't chop things down because everyone has short attention spans. You have to come to them and really listen. But the payoff is that, if you do, you'll probably have a deeper appreciation for music in general. This is one of the most beautiful guitar solos I've ever heard.

 

Hollow Years

On The Backs Of Angels

STOP! THIEF!

I met some people I've known for 12 years for the first time on Friday. This is the wonder of the internet - that you can forge lasting friendships with people you've never seen face to face. Some complain that these aren't real relationships. I've endured this assertion from people who think they really know their next door neighbor because they've borrowed milk from them or talked over the fence. I confess to not really getting to know many of my neighbors. Given some of the places we've lived there's a high probability they were serial killers anyway.

I've found that internet friendships tend to go way deeper than that because at first, there's an anonymity to them, where you can simply be yourself and not worry about the consequences. But then, someone in that group of friends has a crisis and everyone else rallies around. Or it's simply the weight of the years bearing down in which you've discussed one another's marriages, divorces, children, losses, joys and pains, and that creates a bond much deeper than those you share with co-workers or neighbors.You are friends because of shared interests and shared experiences, rather than proximity.

I discovered the internet after being diagnosed with HCM. We had moved in with my in-laws in Searcy, a little town north of Little Rock, AR. I was very isolated every day, and feeling horribly cut off from our past life. A friend loaned me a bunch of game demos since I suddenly had plenty of time on my hands. I wasn't really big on games, as they all seemed to consist of running around shooting people, which seemed boring since it wasn't real and wasn't taking place inside a Wal-Mart or the DMV.

Then I discovered Thief. It rewarded me for NOT killing anyone. I got to sneak around, hide in the dark, become invisible. I won't digress into the many parallels between the game and my own psychological state at the time. Thief is the ultimate example of what happens when painting, sculpting, poetry, prose, architecture, music, and story all come together in harmony, and ironically, it's only in a video game that all of these art forms can be married with technology to produce an interactive experience with them. I was hooked.

Even better, I discovered a network of people who also like this game. A whole forum full of them at TTLG (Through the Looking Glass). Like-minded people who not only appreciated intelligent games, but all manner of intelligent art, music, TV, and movies. I spent countless hours discussing these things with other "TTLGers" and eventually, we also began to talk about Real Life stuff too. That's how internet friendships happen.

Then the company that made the Thief games (Looking Glass) went belly-up before finishing the series. After mourning the loss of this highly artistic group of creators, the TTLG community decided we would finish the series ourselves. Easier said than done, but we did it. It took us five years and thousands of hours of creating, drawing, mapping, recording, playtesting, fixing, arguing, writing, stress, and frustration. We came together as a group of un-tested artists, writers, designers, musicians, and organizers to make it happen. We called ourselves The Dark Engineering Guild. Our number was about 50 when we started, about 12 when we finished. We had no idea what the heck we were getting into.

The finished product was called T2X (Thief 2 Expansion): Shadows of the Metal Age. It was a labor of love for the Thief community, as well as an homage to Looking Glass Studios. The expansion has been played by hundreds of thousands, received wild critical acclaim from all the important Gaming magazines, including being called, "one of the most impressive achievements of any fan community for any game," by the biggest of those, PC Gamer. The month it was released, it was featured on the cover and demo disc of every Gaming magazine that matters, both in the states and overseas. I'm going on and on about it because I'm very proud of the work we did in the name of honoring Good Art. We didn't do it for money, or to get famous - in fact, the most that's come of it is a few of the guys landed jobs in the industry on the basis of their work on T2X. But we mainly did it to affirm that Good Art is valuable, and should be preserved, in the face of a culture that values reality television and games like Halo and Call of Duty. It also bears mentioning that a fan-made game such as this has never been completed without the team members meeting in real life, and to my knowledge, it hasn't been done since. Other accolades for T2X can be seen HERE if you're interested, and I'll stop blowing our horn.

After 12 years, I finally got to meet some of the other developers face-to-face. I'd actually met David Reigel before when we recorded the 12 hour long commentary for the game on its 5th anniversary (which was also featured on the cover and discs of the aforementioned magazines). But this was the first time more than two of us were all together in the same room.

It's no stretch to say that during the many dark days early in my diagnosis, it was the relationship with some of these people, and our common mission that gave me something to get up for on those mornings, in the house, by myself, fearing I could drop dead at any moment. Of course, since those days, we've all gone on to become friends on another level, with a great deal of respect for one another, and an abiding attention to what happens in each other's lives. These are relationships I would trade in a second for many of the "real" relationships people compare them to.

In the next post, I'll talk about my other Dallas experience - finally seeing Dream Theater after being a fan for 20 years. No, it's fine if you don't want to hold your breath until then.

TTLGers - Leatherman, Broken Arts, Mrs. Raen, Raen/Sledge,
DeC/The Deciever, fett

Members of the Dark Engineering Guild:
Duncan Cooke (coding/mission design), Dave Johnson (admin/writer/
audio/design), David Reigel (design lead/sound), Suzy Madden (art design)

The Seductive Power of the La-Z-Boy

We didn't own one for the longest time. And when we did, I didn't even sit in it much. I prefer a desk chair, the couch, or the floor. Until my late 20's, most of my sitting was either in my truck between jobs, or behind a drum set.

Many of you didn't know me then. I was very active - by which I mean, I played and recorded with three different bands as a drummer/vocalist (Ground Zero, Assembly of Odd, and King's Dominion), fronted my own band on guitar (No Man's Band), played lay-pastor for most of the Christian metal bands in Little Rock, led worship twice a week at my church, taught a Bible study twice every week (sometimes thrice), owned and operated my own 100K floor service company, subcontracted other floor work from several Little Rock construction companies, and watched X-Files religiously every Sunday night. This was all fueled mostly by Taco Bell, Mountain Dew, and Rush's Moving Pictures album.

The single biggest change for me over the last twelve years has been the loss of my ability to just go do the things I want to do. I want to play music. I want to work. I want to wrestle with my boys. I want to cook and paint and coach soccer and swim and do a hundred other things that I used to take for granted.

It's one of the things that gets all over my left side - when so called disability recipients were lumped together with illegals, welfare moms, and lazy people during the Obamacare debates. When people with pre-existing medical conditions were compared to "burned-down houses" by Mike Huckabee (who is otherwise a very compassionate person in real life). Generalizations like these cut to the bone because the injury, shame, and frustration of not being able to work, and consequently not being able to afford the astronomical co-pays for expensive tests is bad enough. Being compared to such leeches on the system adds considerable insult. I guarantee that I worked harder in the 18 years that I was able, than most politicians will work in their whole lives. I doubt many of them tossed around 50lb grain sacks or cleaned diarrhea off the ceiling of a Barnes and Nobles ladies room (in that, I AM the 1%. And while we're on the topic, ladies: WHY?). I wish I were making that up.

So Laz-E-Boys, to me, have become a bit of an enemy. Nothing against anyone who loves their recliner - there's one sitting in our apartment right now, and I use it occasionally. Some days all I can do is try to be comfortable on the outside because the medications don't do much for the inside anymore. But I feel a sense of lethargy when I sit in one. Shouldn't I be working on my novel, blogging, doing something with the boys, cooking, cleaning, whatever? Not out of some misguided notion of equating productivity to personal worth. It's more of a time thing. Time is the one thing that can never be retrieved. That doesn't mean I don't enjoy an extended session of XBox or Netflix like everyone else. But that La-Z-Boy - something about it beckons to me in my moments of despair and pain, the voice both alluring and sinister. "You deserve to lay around. You don't feel good. Here, have an entire box of Double-Stuffed Oreos."

Sitting in it feels like giving in to the whole thing. There will come a time when I, like my friend John - an HCM transplant candidate - will be confined to a chair, hoping that my name comes up soon on the list. He can't leave the chair - just the effort of changing from a sitting to a standing position completely knocks the wind out of him. I feel that creeping up on me when I bend to tie Brennan's shoe, or walk from the handicap spot into Target when it's too cold or hot and I'm a little more hurried. Or when it takes me twenty minutes to convince myself that I really can push myself out of bed, from lying to sitting on the edge without throwing up.

See, I hope you don't read that and think, "Poor Dave, it must be so hard." It is hard. It's damn hard, and it's going to get harder. Hey, I've had to force a smile, take the $20 and say, "Why yes sir, the Doors were a great band," and play Break On Through. Believe me, the pain of heart failure is NOTHING compared to that. But a time is coming when there will be no shoe tying, going to Target, or getting out of bed. Period. It's going to have to drag me kicking and screaming, but the La-Z-Boy will eventually get me. For now, it can go hungry, but I suspect it knows a feast is coming.

John said to me recently, "That guy, the one that used to sail every weekend and babied his boat every second it wasn't on the water? That guy is long gone. He disappeared. My boat's rotting out in the driveway." Tough for an old hippie from Cape Cod who lives for the wind in his ever-thinning hair. He's full of hope, but he's also been reduced to a man in a La-Z-Boy.

My Tama drumset, the one Christie and I scraped and saved for, the one I sold in '98 because I couldn't play anymore - I crave it. I still feel phantom Vic Firth drumsticks in my hands every time I hear Iron Maiden or Van Halen because I used to be part of that in my own small way. I don't want to wonder where that guy went. He's also now a father, a homeschooling dad, a writer - many things I really couldn't have been before, but I don't want to lose that part because then I have to admit that HCM robbed me and I've been ripped off enough, thank you very much.

Do you get it? Do what you love and do it hard and do it a lot. Maybe it's not even so much about losing yourself to a heart problem, maybe it's just about growing up and letting some of those silly things go. Fine. But once I get a new heart and go home to my family, I'm buying a pair of drumsticks, even if I can't yet afford the drumset to go with them.

I plan on beating the hell out of a La-Z-Boy.

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.