by unfinishedthinking

By almost any measure, last week was great.  Four days in Beacon with Carley, Jason and ELLA!  Three days in Manhattan, just Ginny and me, a couple of movies and (for me) a great lunch with Jon Kamen, who always has a greater number of interesting things going on than anyone I know.  (The Martin Agency is proud of its new Emmy; there’s actually an Oscar in Jon’s office.)

Even after selling our Riverside home, our beach house and (finally) my mom’s house, Ginny and I still have an embarrassment of property riches, but they’re all at least a little more modest.  We now have a little apartment in Chelsea and medium-sized apartments in Beacon and Richmond.  We love living in our three-city home.   And that’s what Ginny has created:  I feel completely at home in any of these places.  Beacon has quickly become my favorite of the apartments—and I think I’d feel that way about it even if the other Hugheses didn’t live downstairs. It’s a loft space with windows everywhere and a skylight on top. It’s bright and open and contemporary.  The furniture, most of which came from the beach house, is eclectic and inviting.

Our days in Beacon last week were a treat.  So were our days in Manhattan, even if neither of the movies we saw was as good as I hoped it would be.  (James Gandolfini is fabulous in Enough Said, but Captain Phillips is the better of the two flicks.) We love the experience of going to movies so much that we enjoyed both outings anyway.

Last week I was inspired by Ginny’s energy and joy in fixing up the Beacon place.  I was delighted by Ella’s weird Andy Kaufman-like humor. (I can’t describe it; you have to be there.) I was amazed at how many balls Jason and Carley are juggling every day.  I was energized by my lunch with Jon.

Invigorated, I started making plans–things I want to do, things that I can still physically do.

That might have been a mistake.  If you have plans, you’re not ready to die.  Most of the time I don’t think much about dying.  I go through my routines—meds, nebulizer, injections, quick hits of morphine, etc.—and I just think about them as that—routines.  I don’t see them as constant reminders of where I am in my life.  I don’t dwell on dying.  It’s not denial, it’s acceptance.  Acceptance is every bit as good as it’s cracked up to be.  You can have a good time in acceptance.

The things that do get me thinking about dying are the grody[1] things and in the last part of this week the grody things seemed especially vivid.

The elevator in Beacon won’t be installed for some time, so for now it’s three flights up to the apartment.  I have to stop on the third floor and just sit until I muster enough energy to climb the final stairs.  And when I make it up to four, I have to lie down for a while, inhaling big gulps of air.  So in Beacon once I’m upstairs I have to give some thought to going back downstairs.  I never even went to the bakery this week.  That’s grody.

It’s harder lately to finish even a small meal without feeling the blockage in my chest that sends tears to my eyes.  Grody.

It’s getting harder to finish a day without some of that damn phlegm climbing up into my mouth.  (I don’t think Jon noticed it, but for a minute at our lunch, I thought I might throw up.  Helayne Spivack can tell him what that’s like:  she was with Ginny and me at Morton’s steakhouse when I had my worse episode.)  Especially grody.

I have trouble walking four blocks[2] to the movie theater.  I have to stop at least once to catch my breath.  Grody.  (I did laugh when I realized I was in front of one of Chelsea’s gay men’s clubs doing some heavy breathing.  Passers-by probably just thought the old guy couldn’t take the excitement.)

And sometimes I just feel grody.

There are other, less grody but still unmistakable, reminders of my condition. I can get very tired very fast—even if I’m not doing anything.  Sometimes my hands are so shaky I have trouble opening the medicine containers.  It’s hard to pick up the tiles when Ginny and I are playing our marathon Bananagram games.[3]  When these symptoms come in combination with the others, I get a little down.  Maybe more than a little.

I move from acceptance to frustration.  When I’m frustrated, it’s harder to enjoy the things that I can still do most of the time (writing, reading, tv, good conversations with friends, family time, movies etc.) because my mind’s stuck either on the things I can’t do or on wondering if this is really a good time to start reading, writing, watching tv, going down the stairs, etc.  I tell myself just do it—and stop when you have to stop.  But “when I have to stop” means “when one of the grody symptoms raises its ugly head.”  And then I’m back in that damn dying head game.  I already cancel about half my visits with friends in NYC and Richmond because of the way I feel a few hours before we get together. Now I’m thinking maybe I shouldn’t even try to meet people for lunch or dinner.

Enough of the damn self-pity.  I hope I’ve made it clear in my many other posts that I really love my life in the extra innings.  I’m doing much better right now. (Look:  I’m writing!) And six days out of seven are spent not in frustration but in acceptance and even appreciation.  This week is going to be great. I have no reason to whine.

So I’ll stop here for now.  After all, I’ve got things to do.

[1] Some dictionaries don’t include “grody.”  It means gross or disgusting.  Which means it’s perfect for this post. (The word is also big with Ella, who loves to gross me out.  “Look what’s in my mouth, Mickey.”  When I tell her something’s grody she feels like she’s hit a home run.  She runs to tell Ginny, “Mickey thinks this is grody!”)

[2] And these are the short uptown blocks, not the long cross- towners.

[3] By the way, I’m getting sick of these Bananagram games, but I haven’t found anything else that takes my mind off the way I feel when I’m feeling bad.  I don’t know how Ginny stands it.  She’s playing even though she doesn’t “need” it the way I do.  What a trooper.  (Tell the truth:  you’re getting tired of even reading about these damn games, aren’t you?)