Brave

I dated my wife's best friend in high school. Well, the more accurate word is "pursued" or maybe the phrase "pined after." It was an on again-off again relationship, complicated by a guy who was a bit older and cooler than me, myself on the losing end most of the time (at least in my post-pubescent, angst-ridden view of the situation). This friend was generally soft-spoken, and like the rest of my friends, firmly focused on all the latest music, trends, and interests of a late 80's teen, which included me less than I liked most of the time. We were in band together, held hands at the football games, and looked for one another in the halls until interest turned into true, eternal love to last the ages. Oh, the agony, the notes exchanges between lockers (pre-Facebook, we gauged relationship status' by locker notes, of course), the cheesy Richard Marx songs. It was unrequited love at its apex - if you need more to go on, reference the nearest Debbie Gibson or Tiffany song. I was in the grips of an evangelical fervor that would last into my mid 30's, but this unfulfilled romantic quest permeated and enter-twined with every aspect of my life between 1987 and 1989, timidly and cautiously advancing from a crush, to more serious plans for the future. She was everything I ever wanted, or some such Michael Bolton lyric. Red-headed, oft-times in awe of me (in my humble estimation), and we were headed for a lifetime of love and adoration. If I could just get rid of that other guy.

Then there was Christie.

She entered my world on the heels of our youth director's daughter one Wednesday night. They entered late, of course, likely because said director's daughter had been finishing off a cigarette (or worse!) in the parking lot, or simply didn't give a rip if they were late to Bible study. She wore a jean jacket, no jewelry, and the way she carried herself...if she'd been wearing a sandwich board painted in red with the words, "I couldn't care less what you think," on it, the message couldn't have been more clear. I mean, everyone tried to act cool and aloof and one-of-a-kind (all of us in our blue jeans, Bon Jovi shirts, and black, high-top Reeboks), but this was a no-nonsense, don't mess with me, rock hard shell that, while not unkind, really, really, really couldn't have cared less. She was obviously bad news - anyone who hung out with the youth pastor's daughter was, or was about to be. I didn't pay her much more mind.

But her family joined the church, and she became a more permanent fixture in my life when she moved up to 10th grade (along with her best friend, who was soon to become the sole object of my affectations). Our orbits began to cross, and I still couldn't figure her out but for this one thing: she really, really, really, REALLY didn't care what anyone thought. It wasn't an act. She wasn't trying to be cool. She just didn't give a single whit what anyone thought about her - peer, teacher, authority figure. If for some reason she did, it figured absolutely 0% into her decisions and opinions.

I had no idea what to do with this.

In my little high-school/youth group world, my peer group had a depressingly boring autonomous world-view. We had very similar interests, and mainly wanted to do what teen-agers do - hang out with each other, go to the movies, skip class, and survive high-school. As time passed and our obits began to grow closer, I learned details that explained much. She'd moved to my small Arkansas town from an even smaller Arkansas town about 45 minutes away, abruptly, in the middle of 9th grade (10th for me). With her father disabled from a severe back-injury, her brother getting mixed up in drugs, and her mom working nearly 1.5 hours away in Little Rock, they'd made the sudden decision to move. This would be traumatic for any teenager who's never done so before, but to Christie, it was near devastating. She'd always lived in the same town, had the same friends, and spent her time doing the same things - which made her happy. But they weren't the things that excited or inspired the people in my little world.

It was always weird how, on the weekends, when trying to coerce her into joining us for yet another concert, youth group event, or boring party, her only response was, "I can't, I'm going to Searcy." What she did there, in that podunk little town was beyond any of us. But she didn't care. It frustrated us, and soon, our well-meaning invites ceased. Some people (not myself, of course...) took it personally. Didn't she want to start a new life here, now, in the present? Why keep going back to a place in your past? As an Air Force brat, I couldn't get my head around it. Want to come see our band tomorrow night? "Going to Searcy." Going on the youth retreat? "Nope. Searcy."

A few years passed. I went to college in Memphis. The Shakespearean romance between myself and her friend began to dissipate and when I returned from school that first semester on weekends, I found myself more and more haunting the high-school parking lot on Friday afternoons, looking for Christie. Looking for her at church. Caring more about whatever it was she was doing than the endless parade of monotony adopted by my younger friends in my absence.

She called me at school one Thursday night. "I'm going to Searcy Saturday. Wanna come?" I did. And boy did I uncover a mystery long left unsolved. What was in Searcy? Better friends? More exciting times? A secret boyfriend? Hopefully something even more riveting than my speed metal concerts and non-stop bouncing from one planned event to the next. But it was nothing nearly as exciting as all that.

It was just a bunch of Old People.

I don't remember the order, but we visited a lot of (what seemed to me at the time) Old People that day. They were her Grandmother, who I'd already gotten to know a little through her own visits to my town. Aunts. Uncles. Cousins. Friends of her parents who she had grown up with and grown to love like family. A friend or two maybe, but they don't stand out in my mind. We spent the day sitting around musty living rooms listening to her Uncle Sherman's stories about his dogs and the time his brother Ben accidentally shot him in the butt on a hunting trip. We helped her Grandmother can fresh okra from Ben's garden. At Ben and Francis' house, Christie resumed work on a hand-crocheted blanket. I doubt it was ever finished - Christie wasn't there to make a blanket. She was there to see her aunt, and to share this Thing they'd had together since she was little. We picked snap peas and tomatoes with Ben in his garden. Later that night, we ate dinner with her Uncle Harry and Aunt Dean, two of the kindest souls to ever grace this planet. One of the most vivid memories of my life is sitting in their dimly lit living room as the day darkened, talking quietly, them drinking coffee, and me enjoying some cocoa, Aunt Dean being sweet enough to accommodate my distaste for what seemed to be the Authorized Family Beverage.

I don't remember talking much as we drove back that night. You have to understand that at the time, I was a 6+ft. tall, lanky, hard-rock guy. Long hair (probably with braids), torn up blue-jeans and black heavy metal t-shirts. Searcy is a Country town, and Christie's family could have been the face of their city council. Who was this guy she was now dragging around? They probably thought I was on drugs. He's a drummer? Isn't that Satanic?

I got none of this. I got my hands a little dirty in the soil of Ben's garden. I got fresh cucumbers and peppers for lunch and, I'm sure, some delicious home-made lunch from Granny. I met Sherman's dog's. I got to watch my friend in awe of her Aunt, hands weaving and twisting as she created art from raw yarn. I got to sit in a darkening room and talk about things that weren't consequential, yet monumental because at for that hour or so, we were just together, in the moment, unhurried and unpressed. Her family gave me time that day, generously, despite the misgivings I'm sure they harbored about my appearance and immaturity. These trips to Searcy became more frequent on my weekends home. When Christie and I did finally start dating later that year, I wonder what they all thought. I wonder if they imagined that we'd still be together after all that has happened.

The enduring thing I've learned during my marriage to Christie is that she doesn't like change. She didn't then, and she doesn't now. Yet, during the last six years, change has been her daily bread. The day after we returned from Boston in 2010 with my transplant diagnosis, she was up early, on the phone, adjusting her work schedule, following up with the Tufts team. Where should we go? What should we do? She'd already been online trying to find the nearest transplant center that would list HCM patients. Months later, when those efforts had proven fruitless, she took a deep breath and said goodbye to this family with whom she has such deep relationships that she chose them over anything else when she was a teenager, knowing full well that for us to accomplish the task ahead, she might never see them again. With me so sick I could barely help, she took a job with a travel company for nursing, packed up a household, got most of it into a storage unit, the rest into the back of a 2009 Honda Odyssey, and drove us to Hershey, PA for her first of five, three-month job assignments, in an effort to get me listed for transplant in Boston, PA. Every three months - change. Change of job, boss, peers, environment, residence, driving routes, and finances. When we finally did land close to Boston, in Springfield, MA, we were told we would need to relocate yet again. So she re-packed a household, a new dog in tow, left two good-paying jobs, navigated a down-to-the-wire closing on a house, got us moved in, and began yet another new job.

In between all of this were the negotiation of contracts, dealing with my deteriorating physiology, coordinating doctor appointments, procedures, hospital stays, child-care, travel, money, loading and unloading a temporary household with the help of two children, solving inadequate housing issues at times...there are so many snapshots I wish I could just post, so everyone could see. And she went about these things in the spirit I know so well. No one gets in her way, and yes even if she cares what you think, it's irrelevant in light of the goal she's going to reach. She's going to get there - with or without you, and she's either going to wrestle the Thing to the ground and stab it in the throat, or she's going to go down screaming and cursing and someone's still going to get hurt.

The most important song on my latest (and long-time-coming) album Instead of Wither is titled Brave. I wrote it in Springfield, MA at a low moment, when we realized my blood type and disease were still playing havoc with my chances on the waiting list, and it seemed like even the transplant doctors had given up.

We're so small, though I know, we're not the only ones
Lucky shot the whole thing hasn't come undone
All reasons left to hide, have long past gone
We're falling into fears, and traps not yet sprung

If I could be cool, if you could be strong
If we could find a way to just hang on
If we were not fools, if we could be saved
Somehow we might learn to be...Brave

We're so small, just a spot in history
Sorry lot, we may break, we may be set free
Every straw is short, every wait is so long
Stand still, hurry up, your moment may not come

Not because I'm scared, but because I'm tired
Not because you fear to face the fire
Not for all our doubts, not for all our aches and pains
But for hope and one last chance, it's not all a waste   

 You can listen to it here:
http://www.davejohnsonstuff.com/instead-of-wither/

I owe her my life. I owe her everything. I have written much about all the people who have helped along the way. About my fellow Taffers at TTLG, and Perry, and even zombies at one point. I've thanked so many people. I've refrained from doing that much when it comes to Christie, because while she's determined that the Thing isn't over until it's over, it wasn't really over yet. She smiles more now, a warrior at the end of her quest, the dragon dead, the village safe again. But I know that all this determination and bull-headedness was born and nurtured in small houses while canning pickles, and in old men's gardens between the rows of ripe tomatoes. With Ben and Sherman's dogs, and at Granny Lucy's elbow learning to make pie crusts and sausage gravy and recipes measured in increments of "just enough" and "you'll know when." I could tell you long stories about these aunts and uncles, this grandmother, and their hardships as children, the brutal and unfair events of their young lives that made them into the people they were, people worth forsaking all that fleeting teenage silliness to be with for as long as she could, even though life's circumstances tried to push her on from them. At that time, back then, it was the best of all possible worlds to live in.

See, that's what happened to us. Life was good for just a little while, between 2006 and 2009. Then I started getting really sick, and we both just wanted the best of all possible worlds to live in - we lost that for about six years. Forced from it by circumstances beyond our control. But the whole time, she's kind of been trying to get back to Searcy, to get us back to that best of all possible worlds as a family. And she did it. As much as everyone wants to claim this whole Thing a victory for me, she's the real hero and champion of the story. There's really no other way to look at it. Because get this: she didn't have to do any of it. 

And that's the real mark of a hero, isn't it? They don't have to do it. Yet, they determine that it must be done. Either for justice, for truth, or in this case, for love. But many couples don't come out the other end like this. They come out divorced, bitter, angry, put-upon, and irrevocably damaged. Alcoholics. Absentee parents. Cowering and shaking in the shadow of the dragon. But she stood fast - she fought and insisted and did what had to be done no matter who agreed or didn't, whether or not anyone understood. I know I'm married to her, and we still love each other very much all these years later, but she's my best friend. She's my hero. And according to her, that's all she really cares about - and I still consider myself privileged to be that person, because honestly, just like that day I first met her, she still doesn't really care what anyone else thinks. I have no idea what I did to fall into the good graces of such a fierce and loyal soul, but I did, so n'ya n'ya to the rest of you. The only reason I'm breathing, literally, is because of it. I've learned to trust that when she decides to Go Back To Searcy, you'd better not get in her way, and whatever that Means at the time, you can also bank on the fact that it's worth it in the End, whatever the cost.

I can only say thank you, and try to be a man who is worthy of such devotion and sacrifice. Heh, I blew that one years ago. I try to point out to my two boys these qualities as often as I can, but how do you quantify what has happened, or articulate the depth of such a commitment? I can barely grasp it myself. I've said before, just because I've finished doesn't mean I finished well. I hope I was cool, I hope I was strong. I wish that objectively, I could look back on this whole experience and say that I was Brave. But I don't know if I was or not, because none of us can be truly objective about ourselves. But this I know - she was Bravery personified. She was relentless. She always has been.

As for the girl I dated in high school, I'm happy to report that the other guy won. He's a great guy, and they have a beautiful family together. They go to church with my parents (hello, Shelto's, if you're reading!), and I have fond memories of her. They're good people but I'm glad I lost that battle.

I wouldn't have wished the hell we've been through on anyone. But I'm glad when the time came, it was Christie who was beside me, in front of me. It makes sense. It always has. You need the person who's determined to Get Back To Searcy. We're not there yet, but I'm starting to see the exit signs. They're as beautiful as she is.

p.s. Also, don't tell her I posted this. She'll be embarrassed. Thanks. 

It's Everything That Counts

In 1981, some brilliant and visionary person worked at Scotsman Ice Systems, and developed "The Nug." It's the chewable ice that you generally find at Sonic, but can't afford for your home because the machines run in the neighborhood of $2500 to $4000. But that's the kind of ice machines they have at Penn State Hershey Medical Center.

I pondered this at acid-trip length Tuesday night as I lifted a plastic spoon with four of these little ice nuggets to my nose to study them more closely. I could only have about 12 of them since I had a procedure the next day, my first biopsy following the transplant surgery. I'd not eaten or drank anything really, since 4am last Tuesday. One week. There was a moment, while waiting on the nurse to bring the cup of icy goodness, when I thought I'd actually died and gone to hell. It was the only time in this whole ordeal that I actually wished I was dead - that I'd died during the transplant surgery. Perry warned me that the recovery from the transplant would be way rougher than the TAH recovery. He did not lie (ever. Ever.)

I know this because in the middle of my drug addled hallucinations, fasting, and hellish pain last week, I had the presence of mind to look this up and read about it. If there truly is a heaven, there is a special place reserved for this man who worked for Scottsman in the early 80's.
At that time, I had:

• Skin damage on both wrists from my severe tape allergy. My right forearm feels like it's broken from palm to shoulder and no atopical or IV drug has yet to touch the pain.

• A swans catch burning in my neck.

• A huge scar sight from the removal of the TAH canulas, continuing to the second open heart scar.

• 7 (SEVEN) chest tubes. The dressing for this whole thing had to be changed continually because interstitial fluid, and blood soaked the entire bandage any time I shifted or turned in the bed. Bandage off, cleaning with Chlorahexadine (acid made from the blood of Satan himself), skin barrier, piling on of gauze "boats", pads, tape. My stomach and chest look like a shark got hold of me but good.

• Pulse Ox on my finger, BP cuff making my arm sweat, and ten bloody fingers from blood sugar pricks every, single, hour for a week.

• Restless leg syndrome exacerbated by the steroids, so absolutely no sleep.

• Hallucinations and delirium from the steroids.

• Pain in my legs because of the nerve endings waking up in my feet and calves (I honestly don't think I've really felt my toes my whole life. I feel like I've grown two new appendages. It's painful)

• THE NG TUBE. Looking for a God to believe in? You will bow to the awesome pain and misery of the NG tube. You will offer your children to It in sacrifice. You will promise It anything You will do whatever it tells you. It becomes your whole world. They stick this Thing up your nose and you have to swallow It down your throat to your stomach. This allows the nurses to block or dispose of anything that hits your stomach. It's a way to keep you from throwing up water or anything else that goes down (nothing, really) until you have a bowel movement. Because if you vomit, you're headed back to the OR for repairs, guaranteed.

• I'd not eaten in 6 days. Thirst and hunger were my whole world - every time I swallowed, my head exploded like a ripe watermelon. My eyes felt like they were popping out of my head. The NG tube presses on the roof of your mouth, but It feels like someone has shoved bamboo rods into every single orifice on your head. It becomes your master, and you will obey it.

• No sleep, no food, very little in the way of pain meds because everything has to be controlled so strictly.

• Massive amounts of bloating and gas, stomach rumbling, and that feeling like you've just pooped your pants, but it's constant.

So at that moment, I really did wish I'd died on the operating table. I won't pretend it wasn't the worst moment of my life, the most pain I've ever been in. It was a hellish parade of needles, burning tape, chest, stomach, face, and throat pain, the feeling that my arm had been broken, hunger, thirst, painful gas, burning cleaning solutions, hallucinations, finger pricks, blood, fluids, sputum, and the NG tube, my god the NG tube.

The next morning my tubes were pulled. Then the NG went back into the depths of Satan's anus from which it arose. Then yesterday the swans, the cords, the other stuff, gone. Other than feeling manky, I feel human. I can breathe. I can think about future plans without a gray cloud of threatening death looming in the distance. I already have two collaborative music projects in the works - one, an instrumental, meditative work with an instrument called a "Hung" and some hypnotic percussion. The other, a King's X mosh-fest with a friend from Massachusetts - it will be a concept/tribute album to Perry who died here in the HVIC in February. And of course, I want to write, write, write, and spend every moment I can with Christie, Rich, and Brennan just doing nothing.

I don't want to end News of My Demise. I want a whole and complete account about this whole mess and I don't think I've quite captured it yet. At the same time, I'm so ready to move on and retire the whole ordeal so I can get on with a new life. I guess it will be finished when it's finished and I will know. My Aunt Sandy wants a News of My Recovery. I do too. But I want it to be music, novels, food and good wine, laughter with friends, and just goofing around and most of all, an end to the grimness that has lurked at the edges of everything we've done for the last 17 years. I just want to live.

Neal Morse sings a line that touches me deeply - I sob every time I hear it: 

"You've been schooled, had aggression in large amounts - just be truthful, man it's everything that counts. There is no hand waiting that must be paid, we will leave our encores all un-played...but at the end of the day, you'll be fine...." (Spock's Beard - At The End of the Day)

The sentiment being: no matter how we all want things to end, we're going to be interrupted by our own deterioration at some point. But that's okay. Just be truthful because it is everything that counts. I know this: I haven't been truthful with some people. For most, that's no big deal. There are others for whom it's very fortunate. Those conversations and that truthfulness will come - but later, when I'm not amped up on steroids and ready to wrestle bears. For the most part those will be good and conciliatory conversations. For others, that truthfulness will be very unpleasant. But I've been putting off saying a lot of things - good and bad - to a lot of people for a long time. I wanted to get to the other side of this. I think to live truthfully is to live deliberately, which I've not been able to do for a long time. I crave more authenticity and transparency for myself in my relationships. I've been afforded a chance to do that now. And I fully intend to.

And now, the prospect of going home, to a normal life, whatever that is. Hopefully one where people aren't dying all around me, and suffering is just a given. Fewer needles and no cutting. For a guy who used to pass out at the sight of a needle and lie about getting his flu shot, I think I've come a long way. 

And what can I say about my unknown donor that hasn't been said better everywhere else? It is the ultimate gift, the ultimate sacrifice, the ultimate joy and sorrow. It's a conundrum that I can't wrap my brain around yet. I doubt I ever will.

So I guess this blog post was inevitable, really. Or maybe I really would have died waiting like so many others, especially those with HCM. Either way, there are a few more loose ends to tie up. I'll have more perspective in the coming months. Right now, I'm just wondering what the hell all of this was. What did we just do? What just happened to us? Did we make the right decisions? I'm convinced that regardless of how this was going to turn out, like Miley Cyrus sang - it's not reaching the pinnacle of the mountain that matters - it's the Climb. Did we climb well? Not me. Not a lot of the time. Just because I finished the race doesn't mean I ran it well, with the integrity that I desperately hope lurks somewhere inside of me. But now I don't have a choice, because I'm not just climbing for me, I'm climbing for the guy who made it possible to keep climbing.

I'm also climbing for Perry, to me, the most important reason to climb well, truthfully, with integrity, honesty, humor, and patience. Holy crap, if there were some way to articulate how prolifically, wholly, and with what degree of cowardice I would have given up if it hadn't been for that kid. He saved me from myself, and from failure in ways I just don't know how to explain. The pain of that loss is still too near and too sharp for me to talk about much at all but understand my full meaning when I say he kept me from going over the edge. I was 44 and he was 18, but Perry forced me to be a grown up, to grow up. He refused to validate my self-pity, my fatigue - but he also refused to pretend he wasn't terrified and angry. He let me be terrified and angry, insisted on it. I don't know where he came from, what well of strength he drew upon. And I really don't understand how he had any left over for my nonsense. But he did. And as much as I'm mainly able to be here writing this because of the mind-blowing sacrifices of Christie and my boys, that last 5%, where the finish line seems so far away and so intangible - he carried me those last few miles, fairly tossed me over the finish line. He did that for Jamie too (who got transplanted successfully the week before me and is doing well). It's not fair that he isn't here for this. It makes me angry and bitter, but he wouldn't abide that either. All I know is if it hadn't been for him in the right place at the right time, I wouldn't be here right now. God, I miss him so desperately.

There's more to tell. Not much, but a little. So I'll be faithful to do that. But it'll be after I:  a) take a shower, b) eat crab legs, and c) buy a drum set. That may not sound like much but to me it sounds like life. And I'm ready to live.