DROWNING ON AIR – A MEMOIR OF DYING YOUNG: – Page 2 – Life And Death With Alpha-1 Antitrypsin Deficiency-related Emphysema

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.

Housekeeping: #NaNoWriMo

There likely won’t be many long pieces from now through the end of November, as I’m gearing up to participate in my first National Novel Writing Month –an Internet-based creative writing event which challenges writers to create a novel-length (50,000 words) manuscript in thirty days. I’ll still be posting, but they will be shorter, less substantive pieces than, say, Hair-Trigger Nation, or First One’s Free. Expect more content like The Comforting Roar of Eternity or NFQ –short little observational blurbs that I can hopefully imbue with a little craft and poetry.

Sincere thanks to everyone who has read, shared, and/or commented in the past two months. I really appreciate it.

Here’s hoping that I end November with something publishable!

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.

First One’s Free

‘…Almost every adult I knew smoked. Cartoon characters smoked. To complain about smoking was almost rude, like being a vegetarian.’

The America I grew up in was dusted in ash and studded with cigarette butts. Everyone smoked everywhere, all the time: hospitals, grocery stores, movie theaters, high schools –and no one thought a thing about it.

By the end of the 1970’s, when I was a boy, the entire country was like an over-flowing ashtray that had been filling up since Prohibition. The public spaces looked like a morning-after coffee table, and people just didn’t give a damn anymore.

They stubbed out cigarettes on shopping cart handles, on grocery store shelves, on the carpeted floors of department stores, on the tabletops at restaurants and bars. Nearly any flat surface was a socially acceptable option when it came to snuffing out your coffin-nail.

Part of it was just the times. America was grubbier then. There was a sort of gray film that coated everything and the whole nation had the feeling of being worn and lived-in, like a building that had seen too many tenants.

It was completely normal to see someone answer a telephone, pick up a pencil, and start writing on the wall as if it were a notepad. People tossed garbage from car windows without a second thought. People poured used motor oil straight on the ground.

It was like we were all just renting the place.

NFQ

When I decided to start this blog a couple months ago, it was out of desperation. The sense that I was running out of time was palpable. I had butterflies in my stomach constantly and I was an emotional wreck, being crushed under the weight of impending doom. I had no hope and didn’t expect to get any.

In just a few weeks, my outlook has improved dramatically, even if my situation hasn’t.

Writing has been a big part of that. I had things inside that needed to be outside, even if I didn’t know it, and finally getting them down on ‘paper’ has really improved my mental health.

A bigger part, though, has probably been starting pulmonary therapy two weeks ago.

When I started, it had been years since I’d done any sustained physical activity, and I just didn’t think I had the ability anymore. I envisioned nothing in my future but a rapid, unchecked decline in my lung function that would eventually lead to my death.

But in just four sessions at the gym, I’ve already seen improvement. Slight, it’s true, but improvement nonetheless.

More important than the measurable (if minor) physical improvement, has been the immeasurable boost to my confidence that has come from being able to push myself past my limitations –to exceed what I believed to be possible.

That boost in confidence has given me hope and a renewed desire to keep pushing, to keep fighting, and to Never Fucking Quit.

So, tonight, I’ll watch the sun drop down into the sea, basking in the last rays of the day, and luxuriate in the beauty of my lazy little town.

Then, tomorrow, I’m gonna drive that hour-and-a-half up to Astoria, walk into the therapy gym, and I’m gonna get to work.

Letter from Facebook Jail

I just finished up my first Facebook jail sentence, and I have a couple thoughts.

First, I deserved it. No doubt about it, I earned my sentence. In fact, I’m surprised it took so long for me to get put in the virtual hoosegow.

I feel like the Internet I started on back in the early 90’s was the Wild West –anything went. You could say whatever you wanted.

The first time I logged onto Prodigy (that’s right, Prodigy!), it took approximately 4 seconds for someone to insult me in chat (I was typing in all caps). I don’t remember exactly what was said –something about my parents, rat poison, and a slow death– but I recall being impressed by the wit, vocabulary, and vicious beauty of the well-crafted barb. It stung, but it was also funny.

“Oh!” I thought. “Words are weapons here!”

Being good with words, I loved that idea. Within a few months I was jumping into Internet arguments with both guns blazing -my barrels spitting out cutting, witty, and deliciously profane clauses.

In this world, I was a gunslinger.

The Langoliers

I’ve been serving my first stint in Facebook jail, so that has given me time to do some sprucing up around the blog. I updated the theme to match my house, fixed how posts were displayed, and updated the ‘About‘ page. It was an afterthought of jumbled text, and I wanted to clean it up and make it concise, but still information-rich. Ya know. For my eleven readers.

Part of what I wanted to do was link to my music on the web, but I didn’t want to belabor it, so I was going to choose a single representative site. I did a quick search of my name, trying to find the best site to link.

And it was like I’d never lived. Half-a-dozen scattered links over the first few pages of returns. My music all but erased from the digital Rolodex.

As late as last year, it wasn’t hard to find. If you had Googled ‘Brian Holbrook‘ then, the first few pages would have contained links to my albums and singles on Pandora, Spotify, Amazon, YouTube, etc…

It was kind of a comfort to me. I would tell people, “At least my music will live on after I’m gone.”

But nothing lasts, really –certainly not this library of imaginary ones and zeroes.

It made me think of that old Steven King story, The Langoliers, and I imagined my digital past being ruthlessly munched into oblivion by laughable CGI.

It also got me thinking, though, that the only way to outrun the Langoliers was to stay in the present and not get trapped in the past. So, that’s what I’m going to do. It doesn’t matter what last year’s Google might have shown, it only matters what I do today.

So, I’m shifting gears a little bit here on the blog. I’m still figuring out what I want this thing to be, and what I want to accomplish with it, but expect more informal, short entries about my life, health, observations, poems, and even music. I’m still going to write the more long-form essays, but I also want to focus on a couple other things, not the least of which is more frequent, diverse, and shorter content.

More to eat, but in smaller bites, for future Langoliers.

Hair-Trigger Nation

The End of the Beginning

Like most of America, thirty years ago, I fell in love with the Ken Burns documentary, The Civil War.

I’d been a weird history kid my whole life. In elementary school, my mom bought me a monthly subscription to these collectable index cards called Story of America. They had descriptions of historic events on one side and a depiction of the event (or a photo of something related to it) on the other

They were color-coded into different categories that you would organize in the included flip-top file box. Every month you got ten new cards on some significant event or person in American history. They’re how I learned about The Triangle Shirtwaist Fire, and The Sand Creek Massacre, and the Tweed Machine. They were great. I still recall many of the illustrations.

In second grade, I was enthralled by Dick Cavett’s Remember When on HBO, and Vietnam: The 10,000 Day War on PBS. I was probably the only kid in class who was genuinely excited to watch old black-and-white episodes of Biography when they rolled in the projector.

Which is why, thirty years ago, I was happy to be sitting cross-legged in the orange shag carpet of my parents’ living room, watching PBS.

Click To Keep Reading

The Comforting Roar of Eternity

Sometimes, usually at night, when the tide comes in, I’ll be sitting here in my living room, windows open, watching the TV and wondering:

“What the hell is that roaring noise?”

Then I remember it’s the Pacific, just over the berm, clawing at the beach, just like it has been for 200 million years –long before any of my kind were around to hear it.

It puts me in my place, this ocean.

So I mute the TV and listen to the closest I’ll ever get to eternity whisper in my ear.

“You don’t matter.” It says. “You are nothing. This is all nothing. None of this means anything. I will be clawing at this beach 200 million years from now, long after your kind are gone.”

There are people I know who would consider this discouraging, or terrifying, or even a form of heresy or blasphemy. But for me? It is a comfort like a mother’s embrace.

“It has all been OK.” It says. “All you’ve worried about, and fretted over, and tortured yourself because of during long nights of doubt? It’s as insignificant as beach sand. It all gets washed away, eventually.”

And some part of me wishes that it weren’t true; that I’d somehow carved something indelible into the time or space that I have occupied –some proof that I’d mattered somehow. But I’ve seen enough of death to know that the ocean isn’t lying.

We fade within two generations, often sooner. We are sparks from a bonfire: beautiful, blazing, unique, and soon forgotten.

But the longer I live here next to this unimaginably ancient sea, I understand that it is OK. It’s OK to be a spark that is born, rises, touches nothing, and fades away. That is the cycle. That is life.

That’s the truth the Pacific knows.

And sometimes, when I mute my TV, it whispers it in my ear.

The Runner

“Dragline: You’re an original, that’s what you are! Them mullet-heads didn’t even know you was foolin’!
Luke: Foolin’ ’em, huh? You can’t fool ’em about somethin’ like that. They broke me…
Dragline: Aw. All that time, you was plannin’ on runnin’ again.
Luke: I never planned anything in my life.”

— Cool Hand Luke

I’m not sure that I’ve ever made a truly considered decision. I don’t recall ever making a life-altering choice after careful research and deliberation. I have never faced a daunting challenge and weighed all of my options and their possible repercussions to arrive at the best course of action. I leap then look, and have all of my life.

On the day I joined the Army, I had awoken that morning with no inkling that I would do so. I was largely homeless at the time and needed a job –a job that would hire me, train me, house me, feed me, and clothe me. I just happened to be walking past the Armed Forces Recruiting Center when I realized this, so I walked on in. I had no real affinity or preference for the Army, they just happened to be the only recruiters who weren’t at lunch.