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.