Wednesday, February 5, 2014
Why My Facebook Movie Sucked
I avoided Facebook for a few years when it first became a craze. Frankly, there are people who I didn't want to connect with, and I certainly didn't care to tell the world What Was On My Mind because I was not in a good place.
Like most people, my relationship is love/hate. I love the way I can interact with distant cousins and internet friends who I would have otherwise lost track of because, let's face it, I'm not big on phone calls and its nice to be able to drop them a PM occasionally without having a two hour conversation. That may sound like a hollow relationship but it's better than no relationship at all and it often does lead to two hour phone conversations or longer emails.
I began to hate the way Facebook prompted me to share my every thought and life event with all those people. I'm increasingly uncomfortable sharing my life one out of context picture at a time to be seen by whoever wanders on for a moment that day, only to have it buried under commentary about Obama or Justin Bieber the next. Maybe it's my growing health problem, but I've come to value some of these candid moments in a way that makes me want to hoard them for myself.
Which leaves me without much to say on FB unless I engage in political and religious debate, and that is a temptation I am seldom able to resist. My views on those topics have come after many long and difficult years of testing them out, revising them, and even suffering for them. So I feel strongly. Conversely I am given to snarkiness and satire, which makes my posts about these topics seem flippant and reactionary when I intend them to be anything but. Since most FB readers have a short attention span, I'm forced to cram what should be a 30 minute discussion with context into a two sentence comment. It's a bad combination which has painted me as a grumpy, loud mouthed jerk who speaks before he thinks. If you know me in real life, I only tend toward that occasionally (I hope). I think about things deeply but am inclined to do so out loud when I haven't quite got it figured out. This is a formula for hurt feelings and arguments on Facebook.
So in trying to avoid all of the above I'm left with commenting on geek culture and short updates about my health. Boring.
So my Facebook Movie was put together last week, I presume, by the good folks who run the site. But when I watched it, it didn't look like a movie of my life at all. There were none of the heart wrenching failures and losses, none of the elated victories and sense of accomplishment that has characterized the last four years of my life. No mention of finishing The Phantom Tollbooth with two delighted boys. No coming to an understanding with a new dog that I struggled to accept because our previous dog left an aching hole in our lives that will never be filled. No memories of my boys tousled hair when they slept in too late, their joys and sorrows. No coming to terms with my anger about old grievances and finding peace. Nothing about the ongoing kindness of strangers in our lives. No victory lap for my wife and I as we conquered obstacles that would have landed most couples in divorce court. None of that was there. And that has been my life over four years.
Facebook got it wrong because I refused to share myself with it on any meaningful level. I wonder how true that is for my friends and family who are often put off by my FB comments that come from years of examination of what I believe to be true and real in this life, and far more experience than any 43 year old should rightfully have. There is no way to convey all of that in three sentences and a picture and is therefore easy to dismiss as ranting or emotion. Either way, that stuff isn't my life. It may define me to a point, but my life is so much more than anything I can fit on FB and more than I can express in the time most people give a typical FB post. It is more than a funny meme or a passing quiz to find out which Star Wars character I am (Anakin).
I guess that's why I have a blog. Maybe I should start using it more instead of trying to make empty points that don't come off as I intend in the first place. That's not a resolution but a realization that Facebook is what it is. And for all its immediacy and cleverness it still doesn't know me, and it's impossible for anyone else to know me through it. That job is still mine and I have to do better than memes and cheap shot political commentary. I promise I'll try.
P.S. Also that's not the music of my life's movie. How about In My Life by The Beatles or Right Now by Van Halen? Or even Live Forever by Queen, or Die With Your Boots On by Maiden? Wrong, wrong, wrong.
Wednesday, August 7, 2013
Final Destination
(Cross posted from Gypsyschoolhouse in case anyone missed it over there).
It's been a turbulent few months in the Johnson household, to say the least. We've picked everything up and moved once again, one final time, to Lebanon, Pennsylvania, where the weather is mild, the trees are green, and the dairy is fresh. I won't torture you with the tale of woe concerning the buying of houses, the changing of jobs, the unreliability of moving companies, and so on. I would rather talk about how well the boys are doing, how generous our friends have been, and how we finally feel like we've found our home after nearly eight years of bouncing around, wondering where we were supposed to be.
When we left the ministry in 2006, we felt a bit lost, but we also had a new purpose in getting Christie through nursing school. When she graduated in 2009 we toyed with the idea of traveling, simply to see if there was a place out there that fit our family better than Arkansas. As much as we love the Ozarks, especially Bentonville and Rogers, we felt like we didn't fit in. We had made good friends and found a healthy homeschool community, but we were restless. If you've followed this blog, you know we hit the road in early 2011 to see what the world had to offer.
It brought us first to Harrisburg/Hershey, Pennsylvania where we immediately found friends in the homeschool community, and developed a lasting friendship with the Foley family. We hated to leave, but we felt that our adventure must continue, plus we needed to be closer to Boston. Two years later, we find ourselves back in Pennsylvania, five minutes from the park where we first got to know so many wonderful people, and eight minutes from the Foleys. This also puts us in proximity to a ton of farmer's markets, local dairies, great restaurants, Penn State (where Christie now works full-time and I will eventually have my heart transplant), libraries, shopping, bike trails, parks and so many other great things I can't list them all here.
It was clear that we belonged on moving day. Jilted by our movers,
nearly 21 different people showed up to help us unload our van,
including two neighbors whom we'd never even met!
The best thing is that we feel like we're finding our feet again as a family. The boys are happier than I've ever seen them. We've spent a lot of time playing games, at home and at the mall where a local bookstore sponsors a game night once a week. The boys even won some prizes there by participating in a Where's Waldo scavenger hunt that spanned the whole Lebanon county area.
We've spent time in the park, read together at night, had game night, devoured the new season of Master Chef, eaten at our favorite restaurants a few times, and spent time with friends. It's the way life is supposed to be. The Foley's housewarming gift sums it up:
It's been a turbulent few months in the Johnson household, to say the least. We've picked everything up and moved once again, one final time, to Lebanon, Pennsylvania, where the weather is mild, the trees are green, and the dairy is fresh. I won't torture you with the tale of woe concerning the buying of houses, the changing of jobs, the unreliability of moving companies, and so on. I would rather talk about how well the boys are doing, how generous our friends have been, and how we finally feel like we've found our home after nearly eight years of bouncing around, wondering where we were supposed to be.
When we left the ministry in 2006, we felt a bit lost, but we also had a new purpose in getting Christie through nursing school. When she graduated in 2009 we toyed with the idea of traveling, simply to see if there was a place out there that fit our family better than Arkansas. As much as we love the Ozarks, especially Bentonville and Rogers, we felt like we didn't fit in. We had made good friends and found a healthy homeschool community, but we were restless. If you've followed this blog, you know we hit the road in early 2011 to see what the world had to offer.
It brought us first to Harrisburg/Hershey, Pennsylvania where we immediately found friends in the homeschool community, and developed a lasting friendship with the Foley family. We hated to leave, but we felt that our adventure must continue, plus we needed to be closer to Boston. Two years later, we find ourselves back in Pennsylvania, five minutes from the park where we first got to know so many wonderful people, and eight minutes from the Foleys. This also puts us in proximity to a ton of farmer's markets, local dairies, great restaurants, Penn State (where Christie now works full-time and I will eventually have my heart transplant), libraries, shopping, bike trails, parks and so many other great things I can't list them all here.
 |
| Not our house - the view from the front porch nearly every day |
As soon as we get a few more boxes unpacked, I'll put up pictures of the
actual house. We're taking our time because there's a lot of furniture
to buy, but one of the first things we did was paint the boy's room. I
figured they've barely been able to hang a poster on the wall in years,
so even though there are more pressing things to be done, I was anxious
to finish this. Here's a small teaser, more to come:
 | ||||
| Brennan wanted penguins and Rich wanted turtles, so we're making that work together, sort of... |
More than the house, there's a sense of belonging, and permanency that
we haven't had in so long that Brennan doesn't even remember it. Now
he's immersed in a world of friends, playing, and a place he can call
his own. At 8, it's about time.
 |
| Brennan with his buddy, Sean |
 |
| Kirsten Waldron in typical non-plussed mode. Ron Ratcliffe considers stealing Dave's CD's, and Avery and Kate goof off for the camera. |
 |
| Kristie Waldron, Stacy Foley, and Jen McCurdy. Triple Trouble. |
 |
| Jake Waldron mugging. |
 |
| Kirstin and Kate realize there are more of these shelves than any sensible person could ever use... |
 |
| Mark is probably sick of Dave's books at this point, but soldiered on valiantly in the 97 degree heat. |
The best thing is that we feel like we're finding our feet again as a family. The boys are happier than I've ever seen them. We've spent a lot of time playing games, at home and at the mall where a local bookstore sponsors a game night once a week. The boys even won some prizes there by participating in a Where's Waldo scavenger hunt that spanned the whole Lebanon county area.
 |
| Brennan wipes out Kate and the Ratcliffe girls at Snake Oil |
 |
| Maxim teaching Rick to play Magic: The Gathering |
 |
| At Infinitos at Rich's early birthday party |
 |
| Brennan loves Eleminis |
 |
| Rich killed everyone at Flame Wars |
 | |||
| They found Waldo! Rich, Brenna, Kate & Maxim. Brennan won a $50 gift certificate to the game store, and Rich won a basket full of pet goodies for Blitz. |
We've spent time in the park, read together at night, had game night, devoured the new season of Master Chef, eaten at our favorite restaurants a few times, and spent time with friends. It's the way life is supposed to be. The Foley's housewarming gift sums it up:
It goes to show that life never turns out how you expected. Here we are
in Pennsylvania, in a beautiful old house that's a bit like us - a
little beat up from the adventure, but still strong at the core. A
little older, hopefully a little wiser, certainly richer for the
experiences we've had. The hills of Pennsylvania, downtown Little Rock, a
ski resort town in northern New Hampshire, a stone's throw from Long
Island Sound in Norwalk, Connecticut. The metro area of Springfield,
Massachusetts. And all the places we explored in-between. The coal-mine
towns of Danville and Sunberry, the Poconos, Dallas, St. Louis, Raliegh
North Carolina, the visits to Delaware, Baltimore, NYC, Hartford and of
course, our beloved Boston. I am hard pressed to not cheer for the Red
Sox and compare all seafood to Boston cuisine. Boston, small and
over-crowded, opened its arms to us so many times when we were worried
and despairing. Our first experience there involved a woman we'd never
met giving us her phone number and address if we needed a place to stay.
Boston opened its doors and its heart to us and will forever be "our"
city. It's where our kids learned that people are the same, no matter
what they look like or what language they speak. It's where they learned
to explore food. It's where they rode a subway and a taxi for the first
time. It's where we all learned that the world is so much bigger and
wondrous than we'd ever thought. The doctors, transplant coordinators,
and nurses that held our hands, patiently took our phone calls, and
loved and embraced our boys call Boston home. It's because of their
concern for us that we are where we need to be now. And of course, the
friends and family along the way that have encouraged us so much. The
Johnsons, Bostics, Foleys, our incredible cousins, friends like Lisa and
Smitty who quietly pray and hope for us. For all this we are truly
thankful.
The fall brings new things - an attempt to cyber-school, new clubs and
activities for the boys and our family, new friendships, and inevitably
new food. These things that are the essence of life, more so than
careers or money. We've believed that for a long time, but were often
forced to re-arrange our priorities to get to this place in time. Now,
it's time to live. And hopefully to laugh a lot more.
Thursday, February 21, 2013
Here, There, & Everywhere
Hello all. Big News here, even for gypsies like us.
We've been semi-settled in Springfield, Mass since about October of last year. We like it here for the most part, but there is very little in the way of homschooling groups. The boys are involved in archery and fencing, but they spend most of their time on Skype with various friends from Pennsylvania, especially The Foleys (whom are featured in nearly every post on this blog starting in March of 2011). But honestly, it hasn't felt like home. Note the lack of blog posts. We've all been a little "blah" about the whole thing, but resolved to staying here because it's close to my doctors in Boston. This has been the goal from the beginning, due simply to the fact that my heart disease is rare and his case of the disease is unique in itself. We found no doctors elsewhere that were as knowledgeable about it than the Boston/Tufts Cardiology group.
At an appointment last Thursday, my cardiologist had a serious conversation with us about the road to a transplant, and several things had changed since our last visit.
Firstly, the team there has discussed the fact that as my heart failure progresses, I'm having little to no trouble because of the HCM. But because of the damage the HCM has done to my heart over the years, I am having very typical heart failure symptoms for someone in need of a transplant. In other words, the HCM aspect of my care isn't nearly as important as it was a year ago, though still an important issue in his care up until a transplant. I've been primarily seeing the transplant doctor at Tufts, while the HCM doctor is only consulted occasionally.
Secondly, the waiting time for people in even worse shape than me has risen dramatically in this region, and at Tufts, over the last six months. Without getting into the gory details, they informed us that people in my condition aren't even getting accepted to move up the list because there are more urgent cases that have been waiting, living in the hospital for almost a year now. Too many sick people, not enough hearts. Check that donor box on your driver's license, people. It's rough out here.
This puts us in a difficult position. We expected a lengthy hospital stay, but not 10-12 months. We live an hour and a half from Tufts, where I would be. It's almost impossible to imagine how that would work, not to mention the expense of the rest of the family travelling back and forth, hotels, food, missed work, etc. Our goal was to get closer to Boston, but honestly, we're as close as we can get before cost of living outpaces nurses salary. We love Boston, LOVE IT. But it's expensive.
We started exploring alternative transplant centers when we got home, looking specifically at Hershey, PA because of Penn State Med Center where Christie took her first travel contract. Again, if you're a regular here, you know we have a special place in our hearts for the Hershey/Harrisburg area because of the great experiences there, and mostly because of the wonderful homeschool group (INCH) and our friends, the Foleys.
Penn State in Hershey has a shorter average waiting time for people in my situation 3-4 months. This is not to say I need to be transplanted soon - I am still a "status II" and have to move up two more rankings on the waiting list to even be considered for a heart. I'm not sick enough yet. But when that time comes, the prospect of living at the hospital for 4 months instead of 12 is very appealing. There is a good transplant team there with a fairly strong background in HCM, according to the HCM patient advocate organization, my doctor at Tufts, and an HCM patient currently living there, whom I was able to track down. It isn't Tufts, the centrifuge of HCM study and treatment in the country, but it's good enough for what I need now. Better to have a good doctor who can get you through a 3-4 month wait, than the best doctor who has to get you through a 10-12 month wait. Plus the longer I'm in that condition, the more danger of problems with other organs.
So by moving to the Hershey area, we gain many things:
1) A shorter wait time once I get sicker
2) A big support system with the homeschool group that we still feel very much a part of
3) Being near our best friends
4) Christie being able to work at the hospital where I'll receive care, which should take the sting out of some medical costs
5) The ability to live within 20-30 minutes of the hospital
6) Closer to Philly, D.C. Baltimore, and North Carolina and Arkansas (just by a few hours) where our families live.
7) A slower paced lifestyle in a quaint little Pennsylvania town chock full of farmer's markets, old bookstores, community theaters, mom and pop businesses, great food...all nestled into the beautiful PA countryside dotted with dairy farms and creameries.
8) Cheaper cost of living, less driving to the doctor, etc.
Christie is assured of several jobs or contracts with a 30 day notice. Our landlord here has agreed to terminate our lease as soon as he finds new tenants. So we're about to enter that chaotic time of trips to PA to house hunt, packing up here, applying for jobs, and trying to replant ourselves. We feel confidant that this will be the last time. We can foresee being completely relocated by the end of May, depending on the lease situation here.
Life is funny. We've had a great time moving around, but the stress of my medical situation has made it difficult. We feel like a huge weight has been lifted from our shoulders in so many ways. It's scary to leave the shelter of Tufts because they have been an oasis for us after so many years of bad medical treatment. But overall this is for the best. At the cost of sounding whiny, we feel like we deserve a break. If there was one thing we could have (besides a cure) in this situation, it would be the go ahead to move back to PA where we have so many friends. We know Arkansas isn't an option because of the medical care, though we truly miss all our friends and family there. Honestly, PA has become our new home in a sense, the place we go for vacation, where we celebrate birthdays, and where we intended to settle post-transplant. We've been dealt a really crappy card of late, and it's like we were just handed an Ace.
You can read the Foley's perspective on this HERE. We're not sure who is more excited.
Saturday, December 29, 2012
10 Things I Discovered This Year That Were Awesome and You Should Totally Check Out
Sorry I've been away so long, did I mention I've been working on a book? And moving permanently? And getting a heart cath next week? And homeschooling? And playing Dishonored way too much?
So instead of a top ten music list like I normally do (either here or on Amazon) I wanted to expand a bit. Here they are in no particular order.
1) The Newsroom. A new HBO show starring Jeff Daniels. It's a behind the scenes drama about a news show that actually decides to do the news. No Casey Anthony, no opinions from Sarah Palin, just the news that's actually news. Along the way, they manage to articulate every thing that has gone so wrong with American's expectations of the news, and what we consider important (or not). It attacks the dumbing down of the American public by so-called "experts," ratings driven infotainment, and the panic whores on Fox News and the like (the worst purveyors of "tragedy porn" as Daniels calls it). Truly funny, and more often than not it says what I've been thinking for so long - that when citizens get bad information, they makes stupid decisions.
2) Trader Joe's. We now have one about a half hour away and it pains me to say that their microwave meals are better than anything I might slave over the stove for half a day creating. If you've never been to a Trader Joe's, they're basically a self-contained, small grocery store chain that mainly carries their own brand name products. They deal direct with suppliers and you never know what you're going to find there because they constantly change their inventory. Seriously, the best Lasagna and Chicken Marsala I've ever eaten.
3) Van Halen - again. If you've spent more than 5 minutes in a room with me, it might have come up that I'm a frothing at the mouth Van Halen fan. You might have considered a restraining order to protect yourself from have to hear about it again. I even liked Van Hagar. I even tolerate Van Halen III with Gary Cherone from time to time. Yeah. I'm hardcore. The first time I heard Van Halen was on a buddy's walkman in 7th grade. When Panama came on, I nearly peed myself. I abducted the walkman, cut class (the first time ever and for years after), hid in the boy's bathroom, and listened to the whole album (1984). It changed my life, no kidding. So it just makes me giddy to see the Van Halen brothers and Diamond David Lee Roth laughing and joking in interviews and performing together again after 19 years. When he left in 1985 I was heartbroken. I feel like I'm 13 again listening to the new album (A Different Kind Of Truth). And man, what an album. It surpasses some of the classic stuff. I love hearing artists in their 50's doing everything better than they did in their 20's. I'm a fan all over again. See? Longest entry on the list. Be glad I'm not sitting next to you on a couch telling you about it. Trust me, you don't have that kind of time.
4) The Walking Dead. I did a whole post about this show, but suffice to say, I love this show as much as I hate zombies - which is to say A LOT. Like, I hate zombies so much, I can't even recommend the show to you. It is gory. It is gross. I watch it with one eye closed most of the time. But it also makes me whoop for joy and cry over the human condition, and the metaphors for the myriad social and political ills addressed therein...I could go on and on. Simply brilliant, and probably the most cathartic thing I've experienced since starting down the road to a heart transplant.
5) Banana Peppers.
6) D&D - again. As much fun as I had trying to break into the world of Dungeons and Dragons as a kid, I'm having ten times that teaching the boys to play. We got the 4th edition for Christmas from Santa. Can't wait to dig in.
7) Dishonored. Several old friends from my Thief days worked on this AAA game and it's the best thing I've played since Thief. You play an assassin but you don't have to kill anyone, and figuring out how to dispatch the various targets without actually touching them or hurting them physically is quite a puzzler. It requires careful planning, patience, and attention to detail. It is the opposite of Halo. It is to Call of Duty what Bob Dylan is to Justin Bieber. It has sold really well, which means with luck, and a few brain cells bumping together between the publishers (unlikely), we'll see more games like this in the future.
8) That I Cannot Paint With Watercolors. Okay, that's not really my painting. I didn't have one to link to because I destroyed them all before they ate my children and tried to take over the government. Despite having taken a class, being encouraged by my lovely wife, watching online instructors, and persistence that - given my fragile psychological state - was honorable; noble, even, the fact of the matter is that a watercolor brush in my hand births hideous, unholy things that my children should never have to be subjected to. It scares me to consider the depth of dark, twisting horrors in my own soul from which some of those paintings sprang. On to acrylics!
9) Indian Food. While in Norwalk, we had the good fortune of a friendly Indian place down the street called Saffron. I know many people who are under the impression that Indian food involves cat meat, insects, or curry, but nothing could be further from the truth. Most dishes are made with chicken, lamb, or even beef, and depending on the restaurant, goat (which is seriously more tasty and healthy than beef or chicken). The sauces simply use a different spice combination than what you find in Italian or Chinese food - lots of cardamom, nutmeg, cinnamon red pepper, turmeric and black pepper. Sometimes sweet, sometimes really, really spicy, sometimes both. But certainly not "weird" and you're doing yourself a disservice if you don't try a good Lamb Marsala or Chicken Vindaloo at least once in your life. I did, and now all other foods are boring to me.
10) That Facebook and Blogging are taking too much time and attention. I need to be writing books, learning things, writing music, playing with the boys, and reading. So I'm on an indefinite hiatus from Facebook and I intend to scale back my blog roll to a few close friends. As for posting, I will use this blog to post excerpts of books, music, or art I'm working on, and of course for health updates, at least until I feel like writing angry political and spiritually cynical posts again. I intend to keep the Gypsy School House blog going, but less often than I did earlier in the year since we're no longer travelling. Honestly, I'm starting to feel like our lives are a little bit *too much* on display, and I feel obligated to write and post pictures of every little thing we do with the boys. Today we visited an armory and instead of taking pictures, I just watched them. Much more satisfying for the time being. Of course Christie and I are compulsive picture takers, so eventually I'll get back to it, but for now, I'm returning that blog to its original purpose, which was to provide family and friends with a closer glimpse at the way we home school. Or rather, don't sometimes.
So there's my top ten for the year. I'll probably do an obligatory music list on Amazon again so someone can argue with me about whether or not Kip Winger is still relevant (he is). Important stuff. Thanks for reading.
So instead of a top ten music list like I normally do (either here or on Amazon) I wanted to expand a bit. Here they are in no particular order.
1) The Newsroom. A new HBO show starring Jeff Daniels. It's a behind the scenes drama about a news show that actually decides to do the news. No Casey Anthony, no opinions from Sarah Palin, just the news that's actually news. Along the way, they manage to articulate every thing that has gone so wrong with American's expectations of the news, and what we consider important (or not). It attacks the dumbing down of the American public by so-called "experts," ratings driven infotainment, and the panic whores on Fox News and the like (the worst purveyors of "tragedy porn" as Daniels calls it). Truly funny, and more often than not it says what I've been thinking for so long - that when citizens get bad information, they makes stupid decisions.
2) Trader Joe's. We now have one about a half hour away and it pains me to say that their microwave meals are better than anything I might slave over the stove for half a day creating. If you've never been to a Trader Joe's, they're basically a self-contained, small grocery store chain that mainly carries their own brand name products. They deal direct with suppliers and you never know what you're going to find there because they constantly change their inventory. Seriously, the best Lasagna and Chicken Marsala I've ever eaten.
3) Van Halen - again. If you've spent more than 5 minutes in a room with me, it might have come up that I'm a frothing at the mouth Van Halen fan. You might have considered a restraining order to protect yourself from have to hear about it again. I even liked Van Hagar. I even tolerate Van Halen III with Gary Cherone from time to time. Yeah. I'm hardcore. The first time I heard Van Halen was on a buddy's walkman in 7th grade. When Panama came on, I nearly peed myself. I abducted the walkman, cut class (the first time ever and for years after), hid in the boy's bathroom, and listened to the whole album (1984). It changed my life, no kidding. So it just makes me giddy to see the Van Halen brothers and Diamond David Lee Roth laughing and joking in interviews and performing together again after 19 years. When he left in 1985 I was heartbroken. I feel like I'm 13 again listening to the new album (A Different Kind Of Truth). And man, what an album. It surpasses some of the classic stuff. I love hearing artists in their 50's doing everything better than they did in their 20's. I'm a fan all over again. See? Longest entry on the list. Be glad I'm not sitting next to you on a couch telling you about it. Trust me, you don't have that kind of time.
4) The Walking Dead. I did a whole post about this show, but suffice to say, I love this show as much as I hate zombies - which is to say A LOT. Like, I hate zombies so much, I can't even recommend the show to you. It is gory. It is gross. I watch it with one eye closed most of the time. But it also makes me whoop for joy and cry over the human condition, and the metaphors for the myriad social and political ills addressed therein...I could go on and on. Simply brilliant, and probably the most cathartic thing I've experienced since starting down the road to a heart transplant.
5) Banana Peppers.
6) D&D - again. As much fun as I had trying to break into the world of Dungeons and Dragons as a kid, I'm having ten times that teaching the boys to play. We got the 4th edition for Christmas from Santa. Can't wait to dig in.
7) Dishonored. Several old friends from my Thief days worked on this AAA game and it's the best thing I've played since Thief. You play an assassin but you don't have to kill anyone, and figuring out how to dispatch the various targets without actually touching them or hurting them physically is quite a puzzler. It requires careful planning, patience, and attention to detail. It is the opposite of Halo. It is to Call of Duty what Bob Dylan is to Justin Bieber. It has sold really well, which means with luck, and a few brain cells bumping together between the publishers (unlikely), we'll see more games like this in the future.
8) That I Cannot Paint With Watercolors. Okay, that's not really my painting. I didn't have one to link to because I destroyed them all before they ate my children and tried to take over the government. Despite having taken a class, being encouraged by my lovely wife, watching online instructors, and persistence that - given my fragile psychological state - was honorable; noble, even, the fact of the matter is that a watercolor brush in my hand births hideous, unholy things that my children should never have to be subjected to. It scares me to consider the depth of dark, twisting horrors in my own soul from which some of those paintings sprang. On to acrylics!
9) Indian Food. While in Norwalk, we had the good fortune of a friendly Indian place down the street called Saffron. I know many people who are under the impression that Indian food involves cat meat, insects, or curry, but nothing could be further from the truth. Most dishes are made with chicken, lamb, or even beef, and depending on the restaurant, goat (which is seriously more tasty and healthy than beef or chicken). The sauces simply use a different spice combination than what you find in Italian or Chinese food - lots of cardamom, nutmeg, cinnamon red pepper, turmeric and black pepper. Sometimes sweet, sometimes really, really spicy, sometimes both. But certainly not "weird" and you're doing yourself a disservice if you don't try a good Lamb Marsala or Chicken Vindaloo at least once in your life. I did, and now all other foods are boring to me.
10) That Facebook and Blogging are taking too much time and attention. I need to be writing books, learning things, writing music, playing with the boys, and reading. So I'm on an indefinite hiatus from Facebook and I intend to scale back my blog roll to a few close friends. As for posting, I will use this blog to post excerpts of books, music, or art I'm working on, and of course for health updates, at least until I feel like writing angry political and spiritually cynical posts again. I intend to keep the Gypsy School House blog going, but less often than I did earlier in the year since we're no longer travelling. Honestly, I'm starting to feel like our lives are a little bit *too much* on display, and I feel obligated to write and post pictures of every little thing we do with the boys. Today we visited an armory and instead of taking pictures, I just watched them. Much more satisfying for the time being. Of course Christie and I are compulsive picture takers, so eventually I'll get back to it, but for now, I'm returning that blog to its original purpose, which was to provide family and friends with a closer glimpse at the way we home school. Or rather, don't sometimes.
So there's my top ten for the year. I'll probably do an obligatory music list on Amazon again so someone can argue with me about whether or not Kip Winger is still relevant (he is). Important stuff. Thanks for reading.
Tuesday, July 24, 2012
Fields of Gray
After something like the shootings in Colorado, I think we all tend to hold on to our kids a little closer. Sometimes I think they're a balm for all the world's cares. So many people have said so much, but in the end we haven't really figured out anything. I embrace the idea of randomness and chaos as if they are the only true things in the universe. They encompass both serendipity and madmen, for better or worse. The madmen have little appreciation for this.
I have nothing profound to say about madmen or death, I just know we've discussed both far too much for my liking, the older the boys get. Bruce Hornsby wrote this song for his two boys - aged 8 and 10, in the aftermath of the 9/11 attacks. I can't explain anything, and I certainly am not articulate or thoughtful enough to explain madmen. All I can do is be there and hold my kid's hands in the face of such chaos.
Fields of Gray - Bruce Hornsby
When the night lies so still, before I go to sleep
I come by, I come by, just to look at you
In the dim light I say, that in my own small way
I will try, I will try, to help you through
There'll be blue skies falling, there'll be sad scenes and bad dreams
In a world so uncertain, through the clouds it's hard to see
I will grab you and lift you, as you hold on tight and sway
We'll go walking, across the fields of gray [ Lyrics from:
There's a place I can go, when the world gets me down
When nothing, when nothing, goes quite right it seems
As I look there I know, fortune smiles on me so
But who knows, no one knows, about tomorrow
There'll be blue skies falling, there'll be sad scenes and bad dreams
In a world so uncertain, through the clouds it's hard to see
I will grab you and lift you, as you hold on tight and sway
We'll go walking, across the fields of gray
When I was younger I saw things in black and white
Now all I see is a sad, hazy gray Sometimes I see a narrow flash of light
Sometimes I look and you show me the way
No matter what else happens, or what the future may be
In a world so uncertain, through the clouds it's hard to see
I will grab you and lift you, calm your fears when you're afraid
We'll go walking, across the fields of gray
I have nothing profound to say about madmen or death, I just know we've discussed both far too much for my liking, the older the boys get. Bruce Hornsby wrote this song for his two boys - aged 8 and 10, in the aftermath of the 9/11 attacks. I can't explain anything, and I certainly am not articulate or thoughtful enough to explain madmen. All I can do is be there and hold my kid's hands in the face of such chaos.
When the night lies so still, before I go to sleep
I come by, I come by, just to look at you
In the dim light I say, that in my own small way
I will try, I will try, to help you through
There'll be blue skies falling, there'll be sad scenes and bad dreams
In a world so uncertain, through the clouds it's hard to see
I will grab you and lift you, as you hold on tight and sway
We'll go walking, across the fields of gray [ Lyrics from:
There's a place I can go, when the world gets me down
When nothing, when nothing, goes quite right it seems
As I look there I know, fortune smiles on me so
But who knows, no one knows, about tomorrow
There'll be blue skies falling, there'll be sad scenes and bad dreams
In a world so uncertain, through the clouds it's hard to see
I will grab you and lift you, as you hold on tight and sway
We'll go walking, across the fields of gray
When I was younger I saw things in black and white
Now all I see is a sad, hazy gray Sometimes I see a narrow flash of light
Sometimes I look and you show me the way
No matter what else happens, or what the future may be
In a world so uncertain, through the clouds it's hard to see
I will grab you and lift you, calm your fears when you're afraid
We'll go walking, across the fields of gray
Saturday, June 30, 2012
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.
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.
Monday, May 14, 2012
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
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
Tuesday, March 6, 2012
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.
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.
Tuesday, February 7, 2012
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.
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.
Wednesday, January 25, 2012
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.
* 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.
Tuesday, January 24, 2012
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.
Thursday, January 5, 2012
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.
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.
Sunday, December 4, 2011
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
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