Hello In There

PART I

You know that old trees just grow stronger
And old rivers grow wilder every day
Old people just grow lonesome
Waiting for someone to say, “Hello in there, hello”

John Prine, ‘Hello in There’

There are fourteen guitars in the room where I am writing this. Most of them are mounted on wooden rectangles, about two-and-a-half feet by five, upholstered with muted tweed shades of green, grey, and blue. They are hung, hopscotch-style, in an ascending stair-step pattern that wraps around three walls, and terminates at the cathedral-style ceiling, twelve feet off the ground.

Interspersed between the guitars are professionally framed and matted posters –with matching ticket stubs– from a dozen shows from around the Pacific Northwest: Bob Dylan and John Mellencamp at the Yakima Fairgrounds; Leonard Cohen at the Key Arena; Kasey Chambers at the Aladdin; John Prine in Missoula, and half a dozen others.

The instruments and framed posters –all beautifully and meticulously crafted– represent the treasured memories of life-long music fans, but they aren’t mine.

With one exception, I never attended any of the shows on the posters. And, although I wish I did, I do not play or own any of the guitars nestled on their swinging hooks. There is a passion for music that radiates from the memorabilia and paraphernalia so lovingly attached to these walls, but it isn’t mine. It is that of the long-time friends who have graciously taken me into their home.

This is their music room, and I’ve come here to die.

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Something Like a War

It was forty years ago, this year, that I fell in love with baseball: October 1982 and I was nine years old. My team, the St. Louis Cardinals, were in the hunt for the World Series title, facing off against the Milwaukee Brewers. We we considered the underdogs, and I was glued to the TV nearly-nightly during that magical fall, determined to do my bit as a fan to make sure we won. The whole region was crazy with Cardinal Fever that Autumn and it made everything feel electrified and cheerful, almost like a second Christmas.

Baseball fandom was nearly mandatory where I grew up. From the first pitch of Spring Training to the last (usually) heartbreaking out of the season, nearly everyone was following the Cardinals game. It was almost impossible to ignore. From TV’s and car stereos, shop radios to store PA systems, repair shops, gas stations, car dealerships, pawn shops, music stores, everyone had the game playing in some form or fashion.

The Christmas before, my Aunt Shirley (aware of my budding baseball interest) had given me a pendant she’d purchased from Avon: a small, pewter baseball-mitt with a golden baseball in its center, hanging on a silver chain.

Early in the season, I had taken to wearing the pendant while watching the games on TV or listening to them on the radio. During crucial plays, I’d rub the baseball in the center of the mitt with feverish thumbs, closing my eyes and whispering guilty prayers to baseball gods I still only-sort-of-don’t believe in.

By the time my Cardinals made it to the World Series in October of ’82, I was convinced that thing was magic. Every time I rubbed the now-worn pendant and Ozzie made the catch, or Willie knocked one over the wall, it confirmed my faith. Every time it failed, I berated myself as a heretic, unworthy of being a fan–certain that my trip to the bathroom or lapse in concentration had failed both the team and the talisman.

In every other aspect of my life, I am a cold realist, but when it comes to baseball, I believe in miracles.

A little over a week ago, I was placed on hospice care.

Now, I’m not superstitious enough to think that there’s anything that the baseball gods can do about that, but there’s part of me that can’t help but notice that both my teams, the Cardinals and the Mariners, are surging in their divisions, and wouldn’t it be something if they defied the odds and met, in the last World Series I may ever see?

Only a baseball fan could believe in such a thing.

Baseball fans know the outlandish happens every day in the season. From April through October, 30 teams play 162 games nearly every day on the calendar, and nearly none of them go by without some Hollywood moment: some rookie gets a hit in his first at-bat in front of the hometown crowd; the retiring slugger drills one over the wall on his last at bat; the no-hitter happens; the underdog wins; the dynasty continues–they all happen every single day, somewhere, in front of some amazed crowd.

That’s what makes it so easy to believe. If you watch enough of those games every year, year in and out, you’ll have seen the impossible happen, repeatedly. It makes you believe in magic.

I believe that’s what initially attracted Americans to the game: they’re both built on the magical belief that you can win it all, despite overwhelming statistical evidence that you can’t.

You can’t be a baseball fan for any length of time and not know how to lose. Good teams still lose forty percent of their games; the very best hitters fail to reach base seventy percent of the time. Many seasons your team’s win/loss ratio will hover somewhere around fifty-fifty for a period long enough to become worisome. Some years teams can lose nearly half of their games and still win the World Series. The margins are that thin.

Failure is built into the game, and if you can’t come to terms with that, you’re going to have a bad time.

Again, a lot like being American.

But is excellence possible?

Absolutely! You see it every day! A lot of talent, a lot of hard work, a little luck, and…who knows? Maybe magic can happen.

I’ve seen it happen enough that I have hope.

For the country and the game.

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The Cat’s in the Cradle

My son (who is no longer on Facebook and thus can’t be embarrassed by this anecdote) is not overly-affectionate. As a child, he was a hugger, but by adolescence, a side-armed squeeze of the shoulder was the most I could expect as the Christmas party or hospital visit wound down.

I make this observation not as a criticism, but rather as an acknowledgement that people process emotion differently. Did I miss the little boy who would climb into my lap and wrap his arms around my neck, holding me in his embrace until my heart had re-filled with love? Yes, of course. But I wouldn’t trade him for the insatiably curious, determined, good-hearted young man he has grown into.

That said, about six months ago, after my last serious hospitalization, his hugs began gripping tighter and lasting longer.
Today he came to see me for his final visit before returning to college.

We’re both determined to see one another when he returns for Christmas break at the end of this year–but planned this visit ‘just-in-case.’

He sat down next to me on the bed and wrapped his arm somewhat uneasily around my shoulder. I was so stunned by the unusual gesture that I didn’t know what to do. For a moment, two decades dropped away, and I was certain that–were I to turn and look at him–I would see the churubic face he wore as a toddler instead of the guarded but angularly handsome face that is his now.

His arm on my shoulder made me feel so warm and complete and full of love and I’d just begun to move my hand upward to grasp his when, overcome with the weirdness of it all, he withdrew his arm as I stared at my shoes, too stunned by unfamiliarity to react in a meaningful way.

We talked for a couple hours afterward. It was a good visit. He’s a good man and a good person.

But the whole time I couldn’t help but wonder what it might have been like had I managed to reach up and clasp his hand in time.

You have to act in the moments. They’re all we have.

Never Break the Chain

“Listen to the wind blow, down comes the night
Running in the shadows, damn your love, damn your lies
Break the silence, damn the dark, damn the light

And if you don’t love me now
You will never love me again
I can still hear you saying
You would never break the chain.”

-Fleetwood Mac

So, I was interviewed by hospice yesterday. Two lovely nurses came by and asked questions for about an hour. It was at the behest of my palliative care doctor, with whom I had a video appointment last week. When she had suggested that I be evaluated by hospice, I decided to humor her.

Hospice means you’re imminent–or, if not that, certainly not far from it. If it doesn’t imply a timetable (which, even though hospice people are quick to tell you that it doesn’t, the admittance criteria sort-of suggests that it does) it certainly carries a sort of psychological weight.

“You’re not getting out of this…” it says.

And I’m not. I know that. I am chained to this fate.

But, when your endless-numbered-days bleed from one into the other, and your hours stack indistinguishably upon one another in a macabre, terminal Jenga game, day after day, it’s easy to delude yourself that it will all simply continue, stretched out into a bleak, bland future where you continue to exist, somehow. Your logic and science and medical tests pale in comparison to the undeniable fact that you’re still here, decades after they’d said you’d be dead. It feels as though things can just continue as they are, as they have been.

In short, it’s easy to lie to yourself.

Then, two very lovely nurses come along and brighten your morning with their cheery dispositions and helpful manners and remind you that they’re here to help you die the best way you can, because it is fast-approaching.

And you answer their questions and play along, certain that this is all just a bureaucratic formality–something rushed into being a bit too soon, but which would be rude to interrupt or oppose. You tell yourself that it is insignificant because it will never be approved by The Director, so it is all just a bit of play-acting that we are all going through. Harmless, really. Hospice is for people who are about to die soon. You, obviously, are not about to die soon. Not soon enough to require hospice, anyway. It will never be approved.

As they pack to leave, you exchange parting pleasantries.

“Sorry to have wasted your time.” You say.

The nurses exchange a quick, knowing expression.

“Why would it be a waste of time?” One asks.

“Well, I doubt I meet the criteria.” You’d said.

“Oh, you certainly meet the criteria.” Says the RN in charge. “We’ll take the paperwork back for The Director to look over, but expect to be approved in the next few hours.”

They call you back a few hours after they have left. Your nurse will be there to admit you into the hospice program as soon as is convenient. Will tomorrow be OK?

No. That’s too soon, but you can’t think of a reason why. It’s just too soon.

Tuesday?

Oh no. The home health aid who fetches your meals and washes your clothes and runs your errands and helps you shower and takes out your trash, she comes on Tuesday. You can’t start dying on Tuesday. Too much to do.

Wednesday morning?

Your mornings are usually busy. You nap and dream and pretend you haven’t spent the last seven months in the same room. That won’t work.

When can you start dying? Wednesday afternoon? We need to get started. There are forms and paperwork and examinations. There is an opening Wednesday at 1pm. Can you start then?

You assent.

They put it on the schedule. It becomes real and tangible.

Wednesday at 1. The beginning of the end. You make a note on your calendar. For no discernible reason, the Fleetwood Mac song “The Chain” keeps playing in your mind, over and over.

Never break (the) never break (the) never break the chain…”

Passover

I won’t post pictures, because I’m firm in my belief that most adult males –especially those whose feet have spent many years in combat boots– have no business exposing their toes to polite society, but trust me when I tell you that my feet are grotesquely swolen.

My left foot is much worse than my right –a dead giveaway of the pulmonary hypertension and the heart failure that goes along with my disease. For years, as soon as doctors or nurses would hear of my emphysema, they would immediately start poking around my feet. I always felt so lucky, so gratified, to be able to respond that I didn’t have any swelling.

I also didn’t have much congestion. I would read horror stories about end-stage emphysema patients who battled constant congestion and obstruction, fighting for every breath –drinking pineapple juice for hours a day in a vain attempt at relief.

The thing was, in most of those stories, their lung function was better than mine.

In emphysema patients, the number you’re most concerned with is the Forced Expiratory Volume, or FEV1. It’s a measurement of how much air you can clear from your lungs in a given amount of seconds. Contrary to popular belief, emphysema isn’t about not being able to get oxygen in, rather it’s about not being able to breathe air out and clear the CO2 that builds up. Your lungs are like a balloon that you can’t empty, and thus can’t fill with new, oxygenated air.

Your ability to clear your lungs is measured as an expected value, based on what the average healthy person of your age would be able to do.

For the last 10 years, my FEV1 has never been higher than 23%. I am currently around 14%. You can basically think of that as my lungs function at 14% of what they should, for my age.

But most patients –and doctors– shorten all of that until the FEV1 simply means “lung function”, regardless of age, so that people just compare their raw FEV1 number as if it were a hard metric of what you could expect

For years I would measure myself against others who had my disease based solely on FEV1. I was at 23%. Someone else was at 30%, but dealing with never-ending congestion and hypertension. I dealt with neither. I concluded that, like the Israelites in Egypt, I had somehow been passed over. I heard horror stories about what this disease was from people whose FEV1 numbers were far better than my own, and falsely concluded that I had been spared.

What I failed to take into account was age.

Most emphysema sufferers are elderly. The FEV is adjusted for age. Their 30% was not at all applicable to my 23%. Most 40-year-olds do not have emphysema. I was a statistical outlier.

I thought I had skipped out on the hypertension and the congestion and the burning, ripping pain of it all. But I hadn’t. It just hadn’t happened yet.

And now it has.

My left foot is so much bigger than my right. Every time I inhale it sounds like drawing chalk across a slate. When I cough I sound like a seal barking. I had deluded myself that I was immune to it all, but in the last six months, every month brings a new, cruel reminder that –not only will I not beat this– but that I am fast running out of time.

So I hope I get some stories written down before I go. I hope there is something meaningful left behind. I hope that, when it all comes to a head, and then passes like a summer storm, that there will be something left of me that was worthwhile.

I hope I will have left something that justifies all this suffering; some potentially profound beauty that outweighs all this tragedy.

But even if there isn’t–even if I leave nothing of substance, and am never remembered beyond the memorial service– I hope that those of you who have known me have been touched enough by my existence that you have found some happy interaction, or token, or memory, that is precious enough that you will have judged my life worthwhile.

And if not, at least let it be said that I never wore sandals in public.

Just the Tip

I use Uber Eats at least once a day. I don’t really have a choice in the matter –I no longer drive or leave the house, and Lucy and I still need to eat, so I spend a lot of time on the app.

I make a point of looking at my driver’s profiles –not because I worry about their ratings. I don’t. People are dicks to service workers, and downgrade them over the smallest things, so I pay no attention to customer satisfaction. Instead, I’m looking at why they deliver. Often, the reasons tug at my heart: “I deliver to buy my kids food”; “I deliver to pay my medical insurance”; “I deliver to pay my student loans”.

Never is it “I deliver because I enjoy driving” or “I deliver because I enjoy smelling food I can’t afford to eat.”

My former wife would say I’m being used by Uber and their app that plays on my sympathy, for tips.

She loves to tell the story of a little girl we once encountered outside a record store in a run-down strip mall in Fayetteville, North Carolina. She was 8 or 9 years old and wore a filthy, fake rabbit fur coat. She had smudges of dirt on her face and was selling boxes of cold Krispy Kreme glazed donuts. I could have driven a few blocks away and got them fresh and hot off the conveyor, and for less than what the little girl was asking, but, much to my ex-wife’s dismay, I caved and bought four boxes –all she was carrying.

“You’re such a softie.” She said, on the way to the car. “Don’t you know it’s a scam?”

“I don’t care.” I said.

She gawked at my gullible stupidity. Why would I give away something that was mine to someone who’d done nothing to earn it but look sad? She couldn’t understand it.

As we were driving out of the parking lot, we were passed by a car at least ten years newer than ours, the hatchback stacked floor-to-ceiling with boxes of Krispy Kremes. In the back seat sat the little girl in her rabbit fur coat, in the front sat her parents, well dressed and fed, it would seem.

“See!?” Said my ex. “I told you! It was a scam! I bet you feel stupid now!”

For years she told the story at family gatherings. “What a sap I married!” she seemed to say.

But I was never ashamed, never embarrassed. Could I go back in time, I’d still give that little girl in the dirty fake-fur coat the money. It wasn’t about how much they needed it to me.

It was about how much I was willing to help.

I hope I never lose the willingness to help.

Tonight’s driver’s reason for delivering is:

Divine Indifference

When I was a kid, I could be assured of several sources or reading material in my parent’s bathroom: The Reader’s Digest, The National Enquirer, several catalogs, and –later– a volume of essays and short stories by Mark Twain. He was a hero in my home state of Missouri, and I recall vividly when my family made a pilgrimage to his boyhood home in Hannibal.

The book showed up sometime after I was ten and stayed until I was in high school. I don’t know why the book stayed there so long –my dad (the least religious person in the house back then), hated it. He called it sacrilegious and blasphemous. But it sat there just the same, calling to me.

I would crack it open and feel a rush of guilt as intense (if less salacious) as that I’d feel when perusing the lingerie section of the Montgomery Ward catalog.

I loved his unapologetic, withering critiques of religion and religiosity; his courageous and unbending attacks on social and religious norms. The things that horrified my dad thrilled me and made me question my surroundings and upbringing.

Some people love Mark Twain because they know him for Tow Sawyer and schmaltzy Americana.

I love Mark Twain because he was the first atheist I ever read, and he lit a fire in me. Some people’s Mark Twain is an inoffensive tale-teller, spinning yarns about jumping frogs and painting fences and pirate treasure and river rafts.

My Mark Twain? He’s punk rock. He said “It’s all bullshit, and we should tear it down.”

If there was ever a man who endorsed a wall of separation between Church and State, it was him.

“So much blood has been shed by the Church because of an omission from the Gospel: ‘Ye shall be indifferent as to what your neighbor’s religion is.’ Not merely tolerant of it, but indifferent to it. Divinity is claimed for many religions; but no religion is great enough or divine enough to add that new law to its code.”
-Mark Twain

The Banshee

“You’ve got this!” was the last thing I texted her before she was rolled into the operating room.

We had been friends decades before, when we had both attended the same small, Southern high school, but had lost touch after I had joined the Army and she had gone on to college. We had reunited through the magic of social media about a dozen years ago, and had re-established something like a virtual friendship in the intervening years. I admired her ribald humor, her caustic wit, her genuine heart, and her devotion to helping others. For her part, she was always supportive of my writing, my music, and encouraging in my darkest times. We saw the world in much the same way and it drew us to one another.

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Get Up And Do It Anyway

One of the most frustrating things about my disease is how unpredictably variable it is. I never know, day-to-day, how my breathing is going to be. A few weeks ago things were relatively easy and a positive outlook was easy to maintain. I could even summon some optimism about the future. The last week-and-a-half, things have been viciously hard. Walking just a few steps leaves me gasping for long minutes afterward. Something as insignificant as brushing my teeth is absolutely panic-inducing and leaves me trembling. Showering feels like being water-boarded. Even the smallest tasks leave me exhausted. It’s so easy to give in to despair; to want to quit; to want it all to stop; to want all this excruciatingly hard work to be over.

But then I remember all the other times when it was so hard I wanted to give up: that Christmas in a wheelchair, watching cancer take my hospital roommates, one by one, as my body tore itself open like an over-ripe banana; another Christmas in another hospital, staring at the grain of the tile, an inch from my eye, suffocating and certain it was the last thing I’d ever see; another hospital bed and a doctor telling me that if I didn’t start fighting, I was going on a ventilator that night, and probably never coming off.

Dozens of times more, I’ve wanted to give up, because this disease makes everything so goddamn hard. Hard like it’s been the last week-and-a-half.

But I don’t give up. I breath in and out, as best I can, and tell myself to make it to the next second, then the next minute. Minutes build hours, hours build days, and if you put enough days together, things will get better than they are now.

A lot of us –maybe most of us– are going through hard times of one sort or another. None of us know what each new day will bring. If your today is worse than your yesterday, dig in and fight for tomorrow, and the tomorrow after that, until things get better –and things will get better– so don’t quit. Build those seconds into minutes, into hours, into days. Accept that it’s hard. Accept that it’s excruciating. Accept that it’s terrifying.

Then get up and do it anyway.

A Little Something in My Throat

When I finally coughed it up, it was no bigger than the head of a pin. It was a minuscule bit of cheeseburger that I had accidentally aspirated while polishing off dinner over Futurama re-runs. All that panic over something so small; all that terror in such a tiny package.

All day, I’d been telling myself to attempt to walk the four hundred yards to the beach. I’d been going to pulmonary therapy for a couple weeks, so I was trying to push myself physically in ways I wouldn’t have before. I’d decided to try it after I swallowed that last bite, so maybe I was rushing it a bit.

I have to pay unusually close attention when I swallow –even just saliva– because I have to time it carefully with when I breathe –to which I also have pay unusually close attention.

It’s a dance that feels increasingly fraught as my disease gets worse. Nearly every breath feels as if it’s the first one after staying underwater just a bit too long, so I don’t have a lot of time to play around if something goes awry.

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