How Zombies Helped Me Cope

Every once in a while, I get a wild hair for something completely different. This last year, Christie and I decided we needed to expand our taste buds, even if it meant eating a few nasty things to find the good stuff. In the process we discovered that we could both eat Indian food 3 meals a day (okay...4) every day for the rest of our lives and be completely happy. It's this wonderful new world that has opened up, and we get really excited every time we have the opportunity to try some new recipe. I'm even learning to cook a few Indian dishes at home. The boys aren't on board yet, but they will eventually be assimilated.

I do this with other things too. Music I would never listen to (who knew I liked Trance?), books I'd never read (just finished my third version of Faust - opera), and television shows I wouldn't touch with a 12 foot pole (I added the two extra feet on there to emphasize how much I would never watch this show).

The Walking Dead.

Let it be known that R-rated movies were simply not allowed in my house growing up. I'm glad for that, because I feel like there are things that we should be shocked by, and I still am, probably because it wasn't a normal part of home life on the TV screen. My dad once said he'd rather me see a movie with nudity than the gore-fests that were popular in the mid-80s' (all the Friday the 13ths and Nightmare on Elm Streets). Not that I wanted to see any of the above. As a father, I totally understand that now.

Let is also be known that I am squeamish. I don't like blood, gore makes me woozy...these are not good traits for a person with a heart transplant in their future. While I do appreciate the storytelling and metaphorical value of films like the Aliens franchise, or a good action flick like Die Hard (showing my age here...), I have to turn away at the gross parts.

So a friend of mine insisted that I watch AMC's The Walking Dead. "At least the Webisodes," he says. "You'll see how great the writing is."

Zombies are probably the most abhorrent, distasteful thing I could ever imagine. I have never, ever, ever, ever been the least bit interested in anything zombie related, and have in fact gone to great lengths to avoid such media. I'm fully aware of the fact that zombie stories are typically not really about zombies - the zombies are generally a metaphor for the mindlessness of Western culture, or the breakdown of civilization, or the encroaching threat of communism, disease, famine, etc.

Sigh.

So I watched the Webisodes, predictably turning my head away at the more grotesque moments. But he was right - the writing was phenomenal, the casting was incredible, the story was compelling. All of that kept me watching, and even prompted me to watch the first official episode.

I realized very quickly that the story really isn't about zombies at all. It is surely about an apocalypse, in which all but about 12 people have become flesh-eating monsters, incapable of all but the basic of animal instincts. The story is actually about an ex-cop who's just trying to keep his family safe in a world that's been turned completely on its head. The zombies are simply a metaphor for any threat you want to name - cancer, financial bankruptcy, failure, homelessness...a debilitating disease.

Here's the thing I never really considered about zombies before. They are not much of a threat alone, or in pairs. But in "herds" (as they're called), they are an unrelenting, untiring, merciless, and unrepentant force. They bear no malevolence toward their victims, nor do they respect your predicament. They are utterly unaware of the danger they pose, the upheaval they cause, or the suffering they inflict. They are as wild animals, simply seeking the next meal, and they have no other purpose than to pursue the helpless.

To me, the zombies are HCM.

The most compelling scene of the season 2 finale (at least for me) is when one of the female survivors is separated from the rest of the group. Pursued by a horde of moaning zombies, she sprints through the woods, turning to bury a bullet in a zombie head from time to time (the only thing that actually "kills" them). After cutting away to the rest of the group, the story returns to her plight, but many hours have passed and the sun is coming up. She is still stumbling through the woods, out of water, miserably exhausted, and running out of ammo. The zombies draw closer and closer and as the camera zooms in on her face, we see this expression of complete despair as she realizes she can't run anymore. She is spent, and she resigns herself to her fate. I have no idea what happens after that because it was the end of the season.

That look - I felt so deeply at that moment what the character felt. Exhausted, running, trying to find a way just to move a few more steps. I don't mean physically, and I'm being overly dramatic of course. But I feel this way in those moments when I look around and think, "What the hell are we doing here?" The point is that she needed to sleep. She needed water, rest, a few moments to collect herself and come up with a plan. But her enemy would not and could not grant her that. It is unrelenting, and has no need for sleep or water. It is always there, always coming. It holds nothing against her personally - it is a mindless force, simply moving forward for reasons the characters barely understand. It's there when they go to sleep and when they wake up, and it doesn't care that it puts children in harm's way. It is constant, and not something you can run far enough to get away from. It becomes the central driving force that informs every other decision you make.

While the show does a great job of portraying the despair that people can feel in the face of such a formidable force, it's really not the compelling part for me.

This ex-cop, with the wife and little boy, on the run every minute from this threat, is the center of the show. Rick Grimes spends a lot of time second-guessing himself, trying to make hard decisions in no-win situations, trying to keep his family safe, and provide as normal a life he can for his son under the bizarre circumstances. The show spends most of its time exploring Rick's struggles. His son is too young to be faced with such violence and uncertainty, yet all he can do is try to make sure he knows he is loved, and to help him process things that the mind of a child is not yet ready to process. Many of his conversations with his 10 year old remind me of things we've discussed around the breakfast table in our own home. Death, eternity, evil, "what if," and the uncertainty and frailty of human life.

I've been both stunned and pleasantly surprised that a story with such a disgusting and repellant premise could touch me this deeply. I have watched both seasons twice, emoting right along with Rick, empathizing with his unrealistic expectations of himself, and feeling the same desperate need for normalcy as he. It's been more cathartic than any scripture, poem, or encouragement I've had in recent memory, and that's saying a lot because so many people have been so encouraging.

It's just that sometimes you need to see your story told by someone else, no matter how abstract it may be. Who knew it would be zombies (which still gross me out, big time), but I'm glad I took the chance on something I would never normally watch.

If I get a single email about Twilight, I will hunt you all down and eat your brains.

Closer to the Heart

Yes, I used the title to a Rush song. Sue me.

We found out today that I am officially listed. There are still odds and ends to attend to along the way. I'll be posting more this week, though I might be repeating myself. For new readers, go back to the beginning to read all about HCM, transplants, and the journey thus far. For old readers, thanks for listening and not getting too angry when I insult your political party/religion/dog. I try to equally offend everyone, so be assured it's nothing personal.

We're both happy and sad, but more relieved than anything.

A special note to my TTLG friends: Thanks so much for being a shoulder to cry on and all your incredible support. You guys are the best and I'm still proud to call TTLG my home on the web. Here's to another 12 years!




Closer To The Heart - Rush
And the men who hold high places
Must be the ones who start
To mold a new reality
Closer to the heart
Closer to the heart
The blacksmith and the artist
Reflect it in their art
They forge their creativity
Closer to the heart
Closer to the heart


Philosophers and ploughmen
Each must know his part
To sow a new mentality
Closer to the heart
Closer to the heart
You can be the captain
I will draw the chart
Sailing into destiny
Closer to the heart

The First-ish Hurdle

Ever worked really long and hard to accomplish something only to find that at the end, it may all have been for naught? That's how Christie and I felt, sitting in the waiting area at Tufts Cath Lab on Friday.

I realized about 3 years ago that something was terribly wrong with my body. I already knew I had HCM, but nothing had changed that couldn't be attributed to stress - everything was a symptom, but the disease itself hadn't progressed since 1998. I started having intense pain in my lower back - so bad that Christie had to leave class during her last semester of school several times to come home and help me stand up from my desk chair. I was gaining weight, despite a healthy diet and daily low impact work-outs. It took about a year, and several echocardiograms to convince my local cardiologist that something was amiss. He knocked me out, scoped me, and sent me to Boston because he didn't know what to do about my enlarged heart muscle. He simply couldn't care for me anymore.

In April of 2010, after another stress echo and a heart CT, it was obvious the disease had progressed, and done so aggressively. Dr. Maron informed us that the only option now was a transplant. I don't think I can articulate how difficult it was for us to deliver this news to my parents and in-laws. We could barely discuss how to deliver it as we were in shock ourselves. In retrospect, I hope we did it gently and confidently, but those first weeks are a blur. Next came the task of telling the boys. How much detail do you give? How honest can you be with an 8 and 5 year old? There are no books for that, and Google Answers came up dry. There was no hiding it. The smallest thing brought both of us to tears. We were stressed out, overwhelmed with the sheer enormity of the decisions to be made.

We spent hours on the web, trying to find an HCM clinic closer to home, looking up transplant survival stats at various hospitals. Data, data, data until I couldn't look at it anymore. What difference did data matter? I kept ending up on the wrong end of all the statistics. HCM patients don't need transplants. They get ICD's at worst. I have a disease that is being treated successfully by a total of 3 clinics in the entire country (Minneapolis, Boston, and Cleveland). All far from home, far from the neighborhood we were going to live in, the school the boys might go to, their soccer teams, our friends, our families, Christie's hospital that she loved, my band. We tried a clinic in St. Louis only to find that the physician knew less about HCM than we did, and the transplant doctor had no experience with HCM criteria for the UNOS transplant program. That disappointment was nearly crushing. It was our last hope that we could at least go through a transplant with our families in some proximity (6 hours away, but everywhere else was 18-22).

We loved the Ozarks. We loved the proximity to our families and the fact that we could go to the Farmer's Market or library and see 5 people we knew. Our favorite restaurant owners knew our names. It was the life we'd wanted for so long while we were in ministry but thought only existed in fantasy. So many realizations came crashing down: We have to sell a bunch of our stuff because the cost of living is high in any of these three cities. We had to fit into an apartment. Christie had to get a job, but where? Maybe with a travel company that can put us close to Boston as much as possible. It took almost another year to figure out how to do all of this. Lots of moving vans, boxes, storage units, second guessing, crying in the shower, anxiety, and goodbyes. 2010 was a dark year for us, making so many changes, resistant to many of them, and yet knowing we had to go for it. We had to get to Boston if I was going to have a shot at surviving until transplant.

It's important to note that I had not yet been approved as a viable candidate for transplant. You have to live in the area, at least within 4 hours, to even be considered for the list at that particular hospital. Though the progression of the disease had stopped, no one could predict when it would rear its head again. Or if it ever would. We only knew that if it did, I was in big, permanent trouble.

So all of this upheaval was simply for the hope that the rest would work out. There were loads of testing to be done. I took a drug called Norpace for almost 10 years that has a tendency to destroy the liver. If my liver is bad, does it discount me? What if they find some other disease lying dormant in my body? I've lived all over the United States and even outside of the country. What may be lurking that disqualifies me?

We spent a year travelling, trying to get close to Boston, still driving 6-7 hours most of the time. The doctors are telling me I need to make a decision. My blood type makes it difficult to receive a donor heart. I need to be on the list as soon as possible.

My father-in-law's cancer returned with a vengeance, Christie's grandmother (to whom she is extremely close) started having heart problems again. We had furniture sitting in a storage unit in Rogers, AR, 4 hours away from anyone who could pack it up and send it to us later when we finally find a permanent place to live in New England. We took 4 months in Little Rock to settle our business, move our stuff closer to family, and say our goodbyes. Still unsure if I was eligible. Were we crazy?

The payoff was this week. We've been making regular visits to Tufts since we arrived in New Hampshire, some of them to deal with this new arrhythmia problem that's developing due to my heart failure. Also for tons of consults and tests with everyone from psychiatrists to infectious disease doctors. I've had blood drawn so many times I've lost count. Thursday I had ultrasounds on my abdomen and carotid arteries. Friday was the heart cath - the biggie. These were 8 hour days, running from one clinic to the next, grabbing a quick bite in between to keep my blood sugar up. Christie did her best to keep the boys occupied. We brought the laptops so they could jump onto Tufts Wi-Fi and play games to pass the time. They migrated from waiting rooms to cafe's in the hospital, and never complained once. If they can do that, then all of this must be teaching them something, though I'm not sure what to call it. I wish they didn't have to do it at all.

The heart cath was the big deal. If the heart cath didn't come back clean, there was no listing, no transplant. Probably a slew of other procedures to get me to that point, but it would have put things off indefinitely. Sitting in the waiting room, I was ruminating over all of the above. Was it all going to turn out to be worth it, or had we done all this for nothing? My previous troubles with anesthesia made it easier to go through the procedure sans sedation. That was a mistake - it was painful and psychologically straining. Yet one more thing to endure on this road, and hopefully it was worth it.

The heart cath came back clean. What should we feel? Joy? Relief? Dread? How do you verbalize this feeling; "Yay! There's nothing to prevent having my heart taken out and replaced with one belonging to someone who died a few hours ago! Preferably someone young and strong who had their whole, healthy life in front of them! Cheers!" Maybe Hallmark should come up with a card. How can you be so relieved in one moment, and so sad in the next? It's the first huge hurdle in the process, though we had to jump a hundred small ones just to get here. Just to have the chance. But this is the way of it. The transplant itself doesn't guarantee anything, other than another chance.

I guess sometimes, just a chance has to be enough. I hope in the meantime, we've laughed, cried, enjoyed all that we can, and tried to incorporate the hurdles as part of a life well lived. So much has been left behind, and some days it's hard to see the any bright light in the future. But a chance is all I ask for.

Landslide

So several people have mentioned that although I talk often about how much I miss playing music, there's no footage anywhere online of me doing so. If you didn't know, I played drums for many years in some pretty awful experimental/cheesy bands and one pretty good one, then migrated to guitar when the drums became too cardiovascular. I spent a few years doing the singer/songwriter thing without much good inspiration to draw on other than the occasional Jars of Clay album.

By the time I discovered The Beatles and Billy Joel, I was singing and playing bass for a  successful cover band in the Little Rock area called The Dreadnaughts. I also played various percussion instruments and sang for a two man group with the very talented Larry Hahs, called Two For The Show. When our happy hour schedule got too full, I started doing solo happy hour gigs, just me and my guitar. With all due respect to the guys I played with those many years, I enjoyed my solo happy hour gigs the most, because I was able to play whatever the heck I wanted. I covered everything from Stevie Wonder, to acoustic versions of Metallica songs. I also got to throw in more obscure stuff, like Kip Winger, Jellyfish, and a few of my own compositions. The one song I never incorporated that I always wanted to do was Landslide by Fleetwood Mac.

Landslide is one of those songs that struck me when I first heard it. It's both beautiful and sad, and stunningly introspective and wise, considering Stevie Nicks wrote it when she was only 28 years old. She wrote the song while, "looking out at the Rocky Mountains pondering the avalanche of everything that had come crashing down on us ... at that moment, my life truly felt like a landslide in many ways." I certainly identified with her when I first heard it, and the song remains meaningful to me now when I feel overwhelmed by circumstances. It's comforting to in a "life goes on" sort of way.


Christie re-arranged the contents of our van about ten times to make room for me to bring my guitar, so I've been pulling it out every few days and learning some tunes that I never got around to adding to the happy hour rotation - Landslide was one of the first that came to mind. 


So here's my long overdue rendition of Landslide. My voice and playing are a bit rusty, but you get the idea. 

Quick Update

Just a quick note to report a few things:

* I went into the ER Sunday morning again for Afib and was cardioverted (shocked) out of it again. Since this seems to be turning into a chronic thing, Dr. Link, my electrophysiologist at Tufts that I started seeing two weeks ago, started me on an anti-arrhythmic med called Amioderone. I'm taking a huge dose of it this week to get it built up in my system, then I'll take 1/6th of that next week and from now on. It initially caused some blood pressure problems, but we have that sorted out now.

*This Afib is certainly a symptom of my HCM/heart failure, but even without HCM, many people struggle with Afib and take medications for it. In the case of HCM patients ("hypertrophs"), Amioderone is really the only drug option. Afib is extremely hard to tolerate because of our limited oxygen reserves. It feels like having the wind knocked out of you and causes weakness and nausea. Hypertrophs have to be cardioverted out of it pretty quickly, not because it's necessarily dangerous, but because it's extremely uncomfortable. It's something that most hypertrophs deal with their whole lives, but is new for me, and to be expected because of my deteriorated heart muscle.

*Eventually, the Amioderone will not be able to control the Afib. At that point most hypertrophs either have an ablation procedure to "burn away" the area of the heart muscle where the Atrial Fibriliation originates. Some have pacemakers or other IDE devices implanted to help the heart stay in a steady sinus rhythm. These have never been options for me to help with the HCM, but if the Afib persists or comes back, that may be a solution as well. Obviously if I have a heart transplant before I reach that point, it's a non-issue.

*I cannot say enough good things about Tufts Cardiology department. I am working with three different doctors and a transplant coordinator to deal with these issues that come up, as well as the upcoming evaluation for transplant. I will meet with the transplant doctor to discuss testing on February 23rd. This team is part of a huge hospital staff, yet I am amazed at how well they communicate with one another. They always know what's going on, even if it isn't their department or job - I hardly ever tell them anything they don't already know from conferring with one another. That is a huge relief, and it gives us a great sense of security to know they are so diligent to keep up with even small changes (like the Afib). Details matter, and they really, really get that.

*Despite getting off to a rough start, I'm still very mobile and productive. I'm doing schoolwork with the boys, cooking, and even took them to a homeschool group field trip today. It's not too cold here yet, so I'm also able to go outside with them pretty often to let them sled or work on their igloo. I'm really tired sometimes, but otherwise I don't think my HCM has changed much since last year. My water weight/edema is the lowest it's been since this time last year. I'm eating well, sleeping pretty well, and generally enjoying life.  We have a long road ahead, but being nearer to my doctors has taken so much stress off of us, I don't even know how to express it. The support of family and friends is very uplifting, and I appreciate everyone's thoughts, prayers, and various expressions of concern. For those of you trying to inflict me with voodoo curses, I say again, voodoo is FAKE (you know who you are).

Thanks for reading.

All The Things You Leave Behind

Being chronically sick is a purifying fire of sorts. I don't know that we've ever been overly concerned with material things or "keeping up." I think the many years spent in ministry necessitated a lifestyle that was somewhat hand-to-mouth and therefore devoid of the concerns that come with "stuff." 

Of course, over the years, we've also accumulated Stuff, and all that Stuff had to be moved and stored somewhere because of our travelling and the need to fit into a small apartment for the foreseeable future. We got all our Stuff condensed down to fit into the space of a single car garage. Mostly furniture we didn't want to replace, and keepsakes from days gone by. But there's also my 200+ book collection and my 500+ CD collection, and other such things that could be considered frivolities. I may discover in the end that they're just more Stuff that I can do without. 

The things we've left behind are far more intangible than that though. When you're constantly dealing with fear of the ER, fear of new meds, fear for the future, you start to circle the wagons and there's very little that gets pulled into that circle with you. You haven't seen the newest movies. You aren't keeping up with all the TV shows you'd like to watch, and if you watch any at all, it's when they come out on DVD, Netflix, or Hulu, because then you can watch them when you want - you need as much control over your own schedule as possible, and television minus Tivo doesn't conform to that. Speaking of which, you don't see the point in paying for cable anymore, or anything else that many might consider "normal" expenses. You eat out more because everyone's exhausted, one person sick, the other one working. You used to be really conscious of eating healthy food, but find there's not enough time or energy to be fully consumed with that any more. You do the best you can.

You go from the house and van being Clean to being Clean Enough. You pay your taxes at the last minute because it's a distraction from doing more meaningful things. Any extra money goes not towards savings or investments, but toward warding off the most pressing hospital or clinic bill. You cut back everywhere else you can, but keep one or two things in the circle, like the internet and netflix subscriptions. You leave behind movie theaters and DVD/game/CD purchases instead. You buy things used or not at all. You don't care about matching dishes, sheets, curtains, clothes, picture frames...all that Stuff is temporal and a waste of attention that has to be spent just getting through the day. 

You also leave behind a lot of opinions too. I used to think I had everything figured out. There are still concrete things about which I have strong opinions. Things that I know that I know. Public school is training kids for a by-gone era. Van Halen deserves a solid comeback. Dick Cheney is a war criminal. I will argue these things to the death. But I don't know so much anymore about what people should and shouldn't believe, or if it's even any of my business, so long as they're not hurting anyone or breaking the laws we've all agreed on as a society. I don't know what the answers are for the medical industry, the tax laws, the waning interest in the classics. I used to have an opinion on all that. I was a pastor and people expected me to have an opinion on everything from the economy to stem cell research, and I had neither the education or energy to know much about any of it. I did my best. But when you're chronically ill, those things just don't matter anymore. You're more concerned about how much time you spent face to face with your kids today than how much time the public schools are spending on the three R's. Having a family meal together is more important than the fact that you just bought tomatoes shipped all the way from China while your local farmer goes out of business. It's not that you don't care at all, it's just that you only have the energy to care about a few things. The rest you leave behind. And that circle grows tighter the sicker you get. 

I realized we've been living in this ever tightening circle for almost 12 years. There have been moments of reaching out beyond it, trying to be keep up with the lives of friends and family, nieces and nephews, cousins. But the circle is only so big. You stop sending out Christmas cards - 7, 8 years ago? There's no energy left over after all the shopping, cooking, and travelling. Then the cooking has to go. You're only shopping online now, and there is little thoughtfulness to the gifts you give, only the determination to get through the whole season with a few good memories in tact for your kids to enjoy. 

Daily life is the same way. Schedules are at the mercy of nausea and sleeplessness. Circle the wagons - how long can we scrape by on leftovers because cooking is out of the question tonight? Blogging isn't a commitment, it happens when everything is spilling over and you've got to get it out of your head. Television and reading are often escapes rather than pleasures, but you're grateful for the distraction. You still know that they're not really important in the grand scheme. 

Now, all this may sound very dismal, but quite the contrary - it is freeing. I can't remember the last time I fretted over whether or not my toothbrush holder matched the wallpaper, or if the laundry was done exactly right. I'm not stressed about every ding and scratch on the van, just thankful that we have a working vehicle. There is no getting bogged down in the minutiae of consumerism and detail. Everything is big picture, everything rolls out before you in one long, unending line, and if it portends to have no relevance five years from now, it is not worth your time. It's the ultimate Carpe Diem, the seizing of today, the divorce from the tyranny of the urgent. It is terrifying and liberating all at once. I consider myself fortunate to have had such a shift of viewpoint at such a young age, because it has made a tangible difference in the decisions I make on a daily basis for many years now. I wouldn't wish it on anyone else because I also firmly believe that ignorance is bliss. But I also know that I will never be found guilty of taking anything for granted or wasting the day on trivial pursuits. I don't miss much of anything I've left behind. 

The Reality Of It All

We arrived in New Hampshire tired, excited, and hungry, and dying to get a first hand, twelve hour tour of the Dartmouth Medical Center ER. One of the above is not true.

Two hours after our arrival my heart jumped into atrial fibrilation. If you've never experienced this before, imagine someone parking a Wal-Mart truck on your chest and you're pretty close. Every step becomes an effort of supreme willpower, like you have 200lb weights around your ankles. For most HCM patients, the solution to this rather common problem is cardioversion, in which you are anesthetized for a few minutes, then shocked with paddles to get your heart back into a normal or "sinus" rhythm.

I enjoyed this so much, I decided to do it again two nights later. I won't bore you with the details of the procedure and the dangers of me being in the ER to begin with. What I want to emphasize here is how much this sucks, sucks, sucks for my family. I really don't want anyone's sympathy because this is my/our mountain to climb, it's no one's fault, and there are people who have it much worse. I know all this. But for me, I think the effect my HCM has on my family is the hardest part for me.

These two night in the ER had Christie and boys curled up in uncomfortable folding chairs trying to sleep while we waited long enough for the procedure to be safe. Christie and Rich already sick with head colds, after several weeks out of pocket, traveling, not being able to have our "stuff" with us...I just wanted us all to have a relaxing first week in the new place, the boys finally getting to build all the Legos and play the games they got at Christmas but couldn't really open because we were leaving two days later. I hated having to be in the ER so much because of this. Not to mention, Christie just started her new contract this week.

The thing about chronic illness is that it interferes with *everything.* Follow the cause and effect: I have HCM < I must be near my doctor < Christie must take a job near my doctor < the easiest way to do this at present is to be a traveling nurse < we move every 3 months < when in a new area, we don't know anyone who can watch the boys when these things happen < it would be nice to be near family, but there are no HCM specialists in Arkansas, so here we are in New England < my wife and kids are trying to sleep in folding chairs in a noisy, brightly lit ER for the second time in a week < because I have HCM < go back to the beginning.

It's enough to drive me mad, and it will undoubtedly get worse before it gets better.

The frustration of this is beyond anything I can describe. I vent about it here so I can do it once, own it, and get over it.

Most of the time, I'm not scared of HCM, or a heart transplant, or waiting for a heart transplant. But I am terrified that I will be separated from my family for long periods of time while in the hospital. I've been home with both of the boys from the day they were born. I have been their primary care-giver the majority of their lives. Christie and I worked side by side most of our marriage and it's still strange that she goes off the the hospital a few nights a week to a group of people I know nothing about.

Yet I know that eventually, a time will come when the four of us cannot be together 24-7. We're spoiled from having that for so long, and have fought really hard to have as much time together as possible. Knowing that our proximity can be shattered by my heart problem, something completely out of my control, is the thing that really, really gets to me in all of this.

These two nights in the ER have driven home once again how much we are at the mercy of the situation. I have faith in the transplant program at Tufts, in our friends who have so graciously offered to help with the kids as much as possible, and in our ability to adapt and conquer the seemingly impossible. Christie specializes in this. I just hate that she has to.

I'm supposed to go to Tufts next Wednesday for an EP study to determine which anti-arrhythmic medication  will work, and I will be admitted, most likely overnight. If the first med doesn't work, we'll have to wait a bit and try another. This is yet another situation where we're not really prepared for a long stay in Boston, but I guess we need to start figuring these things out. I've learned from experience that miracles are hard to come by, but sometimes there are angels.

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.