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

In Dreams

I just awoke from a dream. In it, I had been strolling lazily through a crowd of friends and family and strangers. We were all gathered under and around a sort of tin-roofed pavillion, that sat on a concrete pad, in a lovely green park by a river. As I was walking, an instrumental track of Ray Lamontagne’s “Jolene” began to play, and I began to sing. My voice reverberated under the pavilion, and it sounded beautiful –much more beautiful than when I actually used to sing the song.

Soon, people stopped chatting and milling about, and everyone began to listen to me, my voice booming out across the crowd. When I was done, the crowd went wild. People cheered and applauded and patted me on the back. My friend Ruben Gonzales came up and hugged me.

“So good to hear you sing again, brother! I always loved how you did that song!” He said.

“I can still pull it off sometimes!” I replied.

The crowd gathered ’round, and people hugged me, and I felt warm and loved and complete and whole.

Then I woke up, and my heart broke, because dream-Brian is a liar, and he does this to me frequently.

I can’t still do it sometimes, and I’ll never do it again. Neither can I run along the dusty trails of Area J, in Fort Bragg, North Carolina, ticking off easy miles on effortless jogs –another common lie he weaves for me in dreams. Nor can I sail boats, or stroll city streets, or cook lavish meals.

Most cruelly, Gloria will never reappear and whisper in my ear that it has all been a bad dream, and that she still loves me –a little fantasy that dream-Brian likes to trot out a few times a month.

I don’t blame the guy. Dreams are the only venue I have to experience normal human activities, and it only makes sense that he would continually return me to the things and people I have loved best. I know he’s not trying to break my heart. But, still, every time I wake up from one of these lovely little lies, it does.

It isn’t the dying that’s hardest, it’s the disability. It’s the loss of identity that occurs from having abilities and activities and relationships stripped ruthlessly away, until there is hardly anything left of yourself, and you are left alone to try and find a meaningful path forward in a life now devoid of meaning.

That’s the hardest part of all of this.

I don’t believe in any sort of heaven or afterlife, but if there is some part of my consciousness that persists, I hope it is in the reality I’ve concocted in my dreams, where I run miles easily, sing songs to rapturous applause, and feel the warm embrace of love once again. That is all the heaven I’ll ever need –a dream from which I don’t have to awake.

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.

Continue reading The Banshee

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.

Continue reading A Little Something in My Throat