Tag / terminal illness

by Brian E. Holbrook

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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by Brian E. Holbrook

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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by Brian E. Holbrook

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.

by Brian E. Holbrook

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…”

by Brian E. Holbrook

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.

by Brian E. Holbrook

Miracle Baby

I was born at about 10:30 P.M. on January 21st, 1973 –less than 24 hours before the United States Supreme Court handed down their landmark decision on the case of Roe vs. Wade.

No one knew I was a miracle baby there. No one prayed over me, or prophesied over me, or spoke in strange tongues while grasping my scalp with hot, sweaty palms. I was just a weird kid who liked Phil Collins and Motown when everyone else liked Def Leppard and the Beastie Boys, and I found that was easier to live with. My mom wasn’t ready to let me leave the church, however –at least not as long as I lived under her roof. So I struggled through thrice-weekly services –once on Wednesday, twice on Sunday– for a couple of years.

I was three months premature, weighed just over three pounds, and was less than a foot long. I’d been a breech baby –meaning I was born feet-first– and the umbilical cord had been wrapped around my neck, cutting off my oxygen supply for quite some time. The doctors told my parents that I had very little chance at survival, and cautioned that if I did, I would certainly be special needs, severely brain damaged, and would require life-long care. To make matters worse, a feeding tube was incorrectly inserted into my lung instead of my stomach, so for the first few weeks of my young life I battled pneumonia.

My parents ignored the doctor’s dire predictions and prognoses and fought to make sure that I got the best care available to me in St Louis, Missouri in 1973.

And I pulled through.

I was the second of my mother’s children to do so.

My older sister, born in June of ’71, was also three months premature, just under three pounds, and faced similar health challenges. She also pulled through.

Not long after we were born, my parents moved several hours south to a little town called Poplar Bluff, near the Missouri/Arkansas border, around where they had both grown up and where they had been married. There, my mother found a church whose congregation couldn’t seem to get enough of the story of her miracle babies.

My sister and I were enrolled in the Christian school that our church ran, and soon all of the teachers knew our story. I don’t really remember a time that we weren’t held up as an example of God’s love and mercy. Teachers would tell my story to other kids in class while I squirmed uncomfortably at my desk. My sister and I would be called before church congregations and school assemblies to have people laud us and prophesy over over us and speak in tongues and exclaim about the big plans God had in store for us, and enumerate all the reasons he’d saved us.

In the late 70’s and very early 80’s, I don’t recall this ever being more than run-of-the-mill evangelism –“Come look at the Miracle Babies, saved by the Lord of Hosts!”– but something began to happen in the mid-80’s, after Reagan’s second term: abortion became a very big deal in the Evangelical church, and our story came to represent something very different to people, and they weren’t shy about telling me so.

I remember being used as an object lesson in front of a class.

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by Brian E. Holbrook

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.

by Brian E. Holbrook

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.

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by Brian E. Holbrook

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.

by Brian E. Holbrook

Drowning On Air

I was twenty-nine years old when the doctor gave me three-to-five years to live. I had a rare genetic illness called Alpha-1 Antitrypsin Deficiency that, in it’s worst form, caused early-onset emphysema. I had the worst form. A lung transplant could prolong my life, I was told, but it was a very risky with a mortality rate of around 80%, five years after the operation, and an eventual failure rate of 100%. Not to mention that the lung transplant was far from a cure: with the associated medications, lifestyle changes, a certainty of organ rejection, and still-present disability looming over transplant recipients, it is often described as trading one chronic illness for another.

There was no possible happy ending to my story. One way or another, my illness was going to cut my life short.

It was June, 2002 –over eighteen years ago– that I had to start trying to wrap my head around that fact. My children (now grown college students) were infants. Looking back on my twenty-nine year-old self from the perspective of the forty-seven year-old man I am today, it feels like I was not much more than an infant myself. In the time that has elapsed between then and now, I lived a life and tried to realize some dreams. I had highs and lows, successes and failures, wins and losses that I could not have imagined, sitting there in the doctor’s office, eighteen years ago.

And now it’s all coming to an end.

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