GETTING DOWN TO THE WIRE

Yesterday we endured a three hour round trip to the Emory Clinic in order for them to tell me what I already know: I am beginning to circle the drain.

My respiratory function - 50% on October 5th has now dropped to a mere 23%. This is, to use the words of Captain Obvious, "Not Good." This illness has raged through me like a forest fire. It is burning me out. I have two choices at this point: to have them put a hole in my trachea and ventilate me until I am completely locked in, or the power goes out - whichever comes first; or to just place me in the comforting hands of hospice and the first option is not only of no interest to me but is probably something I'm too late for.

So the bottom line is that, as of yesterday afternoon I am now under hospice care. Some people see that word and are terrified of it. And, in a certain way it does mean I am getting close to the cliff that we all eventually must march towards. But I see hospice as a way to soothe what remains of my journey. I only wish that our mother had been able to avail herself of its services.

My world has become circumscribed. My appetite is diminished. I take comfort in bedtime and mostly I take comfort in the tender ministrations of my beloved family and the company of my friends.

I'm not in a hurry, mind you but I am a realist and I am preparing myself for the inevitable coda of my life's sweet symphony.

HAPPY HALLOWEEN

Yesterday was Halloween.

My, how things change in a year. Last year, we lived in a neighborhood where we were besieged by trick-or-treaters, sometimes doling out candy to hundreds of kids. This year, not one single ring of the doorbell. It's not like we live in an Old Folks Development now, it's just that there are only a handful of kids in our new neighborhood. Not only that, but the way our home is situated on our lot, it's not obvious where our front door is. You have to be really hard up for your candy dose to go hunting for it.

I was trying to decide how to dress up for this years festivities. I would make a creditable scarecrow with a bit of makeup. Or, with a little costuming, I would make a great Raggedy Andy. I have about the same degree of muscular control as does a rag doll - the main difference is that I have bones.

One of the upsides? I can absorb every calorie I can eat. I can stuff as much Halloween candy down my pie hole as I care to. Getting plenty of food energy is one of my missions in life. Salads? Pfaugh.

A NEW YEAR’S REFLECTION

Adieu

On finishing our life’s long toil
And shuffling off this mortal coil
Sometimes it is a great surprise
The ways and means of our demise

Some by water, some by fire
Some by crazy Uncle Meyer
Some by drought and some by flood
And some, bacilli in the blood
Some by knife and some by gun
And some from having too much fun
Some by food and some by drink
And some because they didn’t think

Some by the hand of evil men
They knew not where, they knew not when
One moment here, next moment not
Such was their tragic, painful lot

Repentance, prayer, and charity
May soften the severe decree
When comes the time to say adieu
May grace and mercy follow you

[an interpretation of the U-netaneh Tokef prayer recited by Jews on the High Holidays, inspired by recent events]

MODEL

I am the very model of a modern paralytical
About my situation I am most extremely critical
To see I’m screwed you need not be so very analytical
If you’re in my condition you are up a creek most shittical

If I told you I was overjoyed I’d be so hypocritical
My attitude these days could be described as miss or hittical
It’s different from when I was so physically fittical
My favorite position now ain’t vertical – it’s sittical

I am the very model of a modern paralytical
If you’re in my condition you are up a creek most shittical

IN WHICH THE AUTHOR EXERCISES A RARE DEGREE OF RESTRAINT

“Sorry, I can’t make it. It’s just my ALS again. It’s fine.”

There’s a tiny part of me that wants to trot this line out – but it would be a major dick move, don’t you think?

WHY I LOVE WARREN ZEVON

Warren Zevon was a musician - a rock singer-songwriter who died of pleural mesothelioma at the ripe young age of 56. He had a rollicking case of OCD, a sardonic sense of humor that some have described as “mordant,” and a life-long dislike of doctors. The latter probably accounts for his premature demise.

He has been gone almost fifteen years now, but some of his songs still bring a lump to my throat and tears to my eyes.

I am in no way an expert on his work. I don’t own a lot of his music, Life’ll Kill Ya being the only complete album I have out of the fourteen out there. But that one gets the job done.

When you listen to Life’ll Kill Ya, it’s easy to get the impression that he wrote it after he discovered that he was terminally ill: It is packed with musings on death and gallows humor. But that impression would be wrong, despite the masterful (and obviously NSFW) tune “My Shit’s Fucked Up,” possibly the best description of being afflicted with a terminal illness I have ever heard.

Well, I went to the doctor 
I said, “I’m feeling kind of rough” 
“Let me break it to you, son - 
Your shit’s fucked up.” 
I said, “My shit’s fucked up? 
Well, I don't see how...” 
He said, “The shit that used to work - 
It won’t work now.”

Exactly.

Then there’s “Porcelain Monkey,” a satirical take on a Elvis that also has a grinning death’s head lurking in the background.

But the song that stabs me in the heart – a song that is still difficult for me to listen to – is “Back in the High Life Again.” Written by Steve Winwood and Will Jennings, it was happy and upbeat, a huge hit for Winwood in 1986. Fourteen years later, Zevon covered it and turned it into the cri de coeur of a delusional lost soul. It was heartbreaking. It was perfect.

Owing solely to coincidence, that song will forever be associated in my thoughts with the passing of a dear friend. So effectively does it bring back those feelings of grief that I can barely bring myself to listen to it. But I love it nonetheless – and, by extension, I love its creator.

And as for me? My shit’s fucked up.

GALLOWS HUMOR

You should be aware that the very first thing I said to my neurologist after he pronounced my doom was, “This may sound about as important as a fart in a hurricane, but... can I get a handicapped placard?“

Gallows humor? I has it.

Making fun of the unspeakable is, for me, a defense mechanism. It’s the way I cope with the inevitable feelings of sadness and fear that come with my condition. I’m not sure whether other people appreciate it, but it comes with the territory.

And you’ve got to have a sense of humor to deal with some of the bizarre synchronicities this universe throws at you.

F’rinstance: The very same day we got the Bad News, I found a message on my phone from the local cemetery, where my wife and I have a little bit of real estate. “Give us a call when you can, nothing urgent.“

Timing is everything.

Indeed, it was nothing urgent – just a request to set up a meeting to discuss their conversion from paper to digital record-keeping. But the timing was exquisite, amIright?