Shoot! Don’t let me die to THAT song!

Okay, it’s been a while. My soul patch has grown out and my hair is now blond/white. Later about that. Mostly these last weeks and months have been about living each day to absolute fullness. Some days that involves more rest than action. Like today–like this week.

Part of severe heart failure is heart congestion, where fluid backs up behind the heart because it can’t pump what it should. So water backs into the body like a shower drain clogged with hair. It gets through, but not fast enough to prevent that cold puddle you end up standing in.

For most people with heart failure like mine, their ankles swell up something fierce. In fact that’s the first place my doctors look when I see them. But for me the ankles aren’t my bathtub puddle. No, it empties out right into my chest and abdomen. Major bummerness. Despite lasix, or furosimide, to squeeze water out of my system, I’m racking up enormous amounts of water every day–sometimes 2 or 3 pounds worth. It’s amazing! Strap (more about straps later) a water bottle on your chest and fill it up every day–sometimes not quite full and other days so full it might pop. That’s the trunk of my body.

Avoiding salt at all costs and limiting fluids is all I can do besides medication. And that medication hammers the kidneys. That’s why I’ve had renal failure three times and the docs and nurses are very loathe to let me take as much as I would like.

Nevertheless it’s this water backlog that tells me how my heart is pumping. Poor little thing is like Sisyphus pushing that rock up the mountain. It’s just never enough. This is why I need a new heart, and before this poor dude gives up and lets the rock fall all the way down.

The other thing that’s been plaguing me is the horse that keeps jumping on my chest. It seems like every week or so I suddenly get this huge chest pain and pressure that builds very fast. I grab the nitro and get to a chair. Sometimes one will wear it down. Sometimes 2 or 3. It feels exactly like they tell you…big pain, big pressure and big fear. After you pop a nitro or two and it’s still coming on, you start to wonder if this isn’t it. That whatever tune is playing on the computer will be the one you die to. That someone’s going to find me slumped in a Carter Smiley chair with Hardball blaring on the TV.

Seriously. A few weeks ago I was on my second nitro, splayed out in the chair and trying not to move a muscle, trying to breathe and relax and let my poor heart calm down, when I heard John Denver’s voice. Christ almighty, puhleeeze don’t let me die to John Denver! Tom Waits, Dylan, Brett Dennen–cripes, I’ll take Rusted Root , Iron and Wine or the Ditty Bops! Or maybe something really profound and weird and religious like Roísín Murphy or Magnetic Fields!

Hey, don’t laugh! It’s important! What do you want to die to? Oh, you haven’t thought about it, huh? Oh SURE! And don’t think you won’t, now. Or won’t when it comes your time to stare down the grim reaper!

So it’s been a couple months of re-curring reminders that I live on the edge. Ooooh, like that’s new for me!

In the meantime as I am able, I’m creative as hell right now. Finishing up a huge project putting together a workbook, teaching materials, powerpoints, website and marketing materials for our friend, Cindy. Recording music. Writing and drawing and creating graphic arts for events and organizations. I feel like I have so much to do and not enough time to do it.

What gets most in the way isn’t the chest pain. That’s a couple nitro’s or a trip to the hospital. Not much in between. But I also get these physical washouts that come on so fast. I’ve got some energy and then all-of-a-sudden the tide washes out and I am spent. These are accompanied by what feels like a steel strap getting cinched around my chest. It stays for hours and days and, though I keep coming into my studio and sitting at the computer, my body says, “screw you, buddy. we’re not doin’ nuttin’…” (sometimes my body is slightly less articulate than one would think, though that may be the blond talking, now…)

Overall it seems pretty clear that my heart surgery was a try, and that’s about all. Even the two by-passes that we had hoped could spark a little more activity in my left ventricle don’t seem to have done much. My chest pains and pressure are coming on more often and more strongly than ever before. ON THE OTHER HAND I HAVEN’T BEEN ADMITTED TO THE HOSPITAL. So it’s a mixed bag.

August 20 I go in for another echocardiogram and we’ll find out if my EF has gone up or down, and how my blood clot is doing down there in that left ventricle.

Now, on to much more important issues! If you watch HGTV, you might have seen a program called, “What’s With That House?” whose host is George Gray. He is my new fashion hero. With his geek glasses, bleached hair and soul patch, and his totally groovy shirts he’s a role model to coolness. So I went out and got a bleaching kit and, first, “did” my soul patch. It took a lot longer than I thought (and the stuff burned more than I thought…), but it worked and my hair didn’t fall out. So the next day I did my whole head. Well, Judy did. What fun! So, with a little product and a cool shirt I am, voila, George Gray redux! Since I’m recording music, I do need to look like a musician!

Jude got me a jazz harp (along with tickets to the Ditty Bops, among other things), so I really have a new, beat image to live up to. They laughed at the church. A few people haven’t recognized me. And I seem to be having these “blond” moments where only simple words will come into my head and I giggle for no apparent reason (well, it could be the Mad Cow, too…).

We continue to hit the Portland music and art scene and continue to toil away at discovering new, wonderful restaurants (ie. pokpok — voted best restaurant in Portland–and Rocket: Failure To Launch). If you come to visit you’ll see. This is a paradise for the arts, for music, for food and for beer!

No word on date for wedding! You’ll have to talk to Judy about that!

Speaking of which…I guess I better put down the engagement story or I’ll get flamed by some of you!

When we first moved to Portland one of the places Jenny and Pat took us to was Pioneer Place, the downtown mall and specifically to Twist–a funky, quirky, expensive store with eclectic, fun stuff. Judy looked at jewelry (including rings, as she is wont to do) and tried on one that just blew her away. It was designed by Gabriel OFeish and is called an Orbit ring. I filed her excitement and ring size away for later referral.

After my open heart surgery, when we had found out it had failed, a good friend came up to me after church and asked me, “What are you waiting for? Maybe you ought to think about proposing to Judy.” It was true. Back so abruptly to life one-day-at-a-time, what was I waiting for? So over the next couple weeks I schemed, with the help of my daughter Jenny, and set the trap.

I emailed a wonderful artist friend, Steve Eichenberger (who crafted the sculpture of Jenny
now above our mantle), and told him about my plan to propose to Judy in a gallery. But I needed the right gallery. The right art, the right feel, and most importantly the right owners. He suggested Beppu Wiarda Gallery in the Pearl. And Gail Beppu was absolutely magnificent!

So I got the ring and went by the gallery to set the whole thing up. Later Jenny and I went back with a CD of music, a glass-domed wooden pedestal, a small but interesting sculpture of a man and a woman intertwined, and a small card with title, artist and price that matched the others in the gallery. Gail agreed to turn the music on when we walked in the door–due to be 5:00 that Saturday.

I was able to get Judy to wrap up her beading project and go with me to the gallery. I told her that Steve had insisted this was art we just had to see. When we got there and walked in the door, I saw Gail dart behind a screen and, as I led Judy around to the different pieces, the music began.

‘Hey, listen to that,” she said. “We sing that all the time! That’s the song!” It was Ruby by Ray Charles. When someone (including us) says, “you know what they say…” we both break in with…They say, Ruby you’re like a ….”

“Hmm, are you sure?” I asked her. “I’m not sure that’s it.”

We continued around the exhibit and I finally led her toward the back, where other smaller art pieces by many artists were displayed. I was trying to slow here down so that the next song would start at exactly the right moment. Finally she worked her way over to the wall and shelves. “Oh my God! It’s my ring!” And there, under glass and perched between the stone couple, was the ring. On the shelf the note said: “One door opened” (the words to a song I wrote for her one Valentine’s Day), Gold, Platinum, Diamonds (the medium), and the artist’s name, Gabriel D O Fiesh. Below that it said, where the price should have been, “NFS: worth a lifetime.”

At that moment the song began. “Night and Day” by the Temptations–a song we had danced to many times.

The ring. The note. The song. As I saw it begin to dawn on her face, I dropped to one knee and proposed. She was crying before I finished the question and said through her sobs, “Yes!” and held me. Then Jenny and Pat stepped out from behind a door and she cried some more.

We walked down to Georgio’s where Jenny had set up a beautiful bouquet of orchids in a lovely, artistic ceramic vase. I had given Jenny a bottle of Dom Perignon 1995 (it been given to me as a give some years before and I’d been saving it for something special. This was special.) and the waiter served us. As we toasted, a few friends dropped in to share the moment with us. It was perfect. We were engaged.

So life rolls on. Every day is an adventure. I am much more careful now with my music, of course. Only tunes good enough to end the movie.

Now go give someone a kiss.