Eggs

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I never loved the cigars themselves
with their bitter residues.
But I did love those times with you,
when the two of us
drew chairs to the height of the tide,
through sand still warm from Mexican sun.
Who knew that we would be real amigos?
Our differences
made a connection worth its pursuit.
Right beside you,
while breakers clapped shut
along the concave bay,
I felt mountains at our backs
and the sky overhead,
and life was plainly a thing to prize.
This was before we learned of my fate.
You saw a shape heaving across the beach,
awkward out of the water.
A three-foot sea turtle had come to bury its eggs beside us
as if we were complicit.
We’ll incubate that memory,
you and I,
until both of us
swim free with the hatchlings.

 

Some Very Fine People

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Oscar’s name cemented his street cred with the kids at Peachtree Elementary, in Norcross, GA. Their head custodian wasn’t green or grouchy, but he drove a bus route, emptied endless bins of trash, skimmed hallways with a broom spanning six whole feet, mopped vomit, and supervised a crew of janitors, besides innumerable duties that weren’t so visible. Some of his underlings worked full-time, while others were simple teenagers, putting in their fifteen hours a week vacuuming classrooms. I was part of that latter group during the school year. Throughout the summers, though, when the deep cleaning happened, I worked like an adult.

Oscar Freeman was black and bald, and since he shaved his pate daily, his eyes and teeth were prominent. The man was always laughing. His guffaws ended ecstatically, in outbursts that descended in pitch. The shrill sounds were audible from the deepest reaches of whichever building he occupied. He was kind and patient with me, even when I didn’t deserve it. Once, I embezzled an industrial-sized box of toilet paper, in order to contribute to the senior prank at my high school. I got caught afterward, when the slim inventory of TP triggered an investigation. Another janitor said that they’d seen me hauling the box. I still cringe, recalling Oscar’s fixation on the patterned floor of our principal’s office. His hands were clasped tightly enough to give me a spine, but I could only act like a wise-ass, telling his boss that I chose to “plead the Fifth” when she asked me whether I’d taken the paper. Somehow, they both forgave me.

My other co-workers: Harold, a crabby, aging dickhead; a married couple named AJ and Roberta, and a mother and son named Frances and Paul. They were the full-timers, and, other than Harold, all of them were black. It was my first time teaming so closely with those who were a different race than I was. I recruited three of my buddies: Jason, Ryan, and David, to help with afternoon vacuuming. One year, a guy named Finn joined in with his cheeks perpetually red, whether from wind, scrubbing, or just showy good health, I don’t know.

Oscar’s athletic, teenage stepson, Troy, was cocksure and full of materialistic dreams. He challenged me to contests. Once, we plunged our arms elbow-deep into ice water until I pulled first, my hand screaming. Troy gyrated in triumph. I made the mistake of telling him that the young students grew excited when I arrived to empty their wastebaskets, out among the trailers, just before final bells dismissed them for the day. “Trash Man’s here!”, they all hollered. Troy took delight in hailing me that way afterward, weaponizing what should’ve been innocent.

Yet I would be the one to call AJ, a friendly man who might’ve been thirty years old, something far worse. My paternal grandparents had come from country, small-town Alabama. But that didn’t mean that they reflexively saw black people as inferior human beings. My Grandpa had despised the state’s governor and presidential wannabe, George Wallace, and the reactionary, defiant segregation that he’d championed. I also recall walking to the public swimming pool with Grandma, where we swam among shoaling black kids. She stayed unfazed. I never saw my grandparents treat anyone separately just because of surfaces. But on rare and memorable occasions, they used terms like, “pickaninny” in private.

Given my grandparents’ otherwise tolerant attitudes and behavior, I wonder if words can percolate through the minds of individuals; families; entire peoples, in the way that run-off filters down through layered clays and limestone to return pure to the surface. Can those hateful words re-emerge with innocence on tongues that know better?

Help me to ponder that question as I tell you how, when I was young, my dad would insert the term, “boy”, into remarks that were meant to motivate, tease, or praise me. Some examples: “Boy, you better work on your fielding. Get that glove down!” Or, “Boy, do me a favor and mow the lawn today.” Or, “You looked mighty fine up there. I sure love you bunches, boy!” It never occurred to me that, “boy”, could be something beyond a term of endearment.

So, on a late-summer’s afternoon at Peachtree Elementary, when our to-do list was headed in the wrong direction, I turned to AJ and said, “Boy, you’ve got your work cut out for you now.” His face became hardest obsidian. ” Don’t call me that.”

“Don’t call you what?”

“Boy.”

“Why not?”

“Because it’s racist!”

“It is?”

Yeah, it is!”

“Well, damn, I’m sorry that you’re taking it that way. I grew up hearing my dad call me that a lot. Can you understand?”

“Did your daddy also call people niggers and spades and shit like that?”

“Oh, hell, no!” I explained that “boy” was a pet name and that, as far as I knew, it had never held a racist slant. I told AJ that I could, in fact, remember dad pulling over to talk to crews of black laborers who were waiting after their days’ work, and then inviting them to climb into the bed of his pickup and driving them to the nearest light-rail station.

In turn, AJ gave me the history of white bigots who called black men, “boys”, and he told me how the insulted adults began greeting one-another as, “man”, which became another piece of slang that white kids co-opted.

“Thanks for breaking that down for me, AJ. But, now I’m worried. Can we ever be cool again? I just feel like an asshole.”

“Yeah, we’re cool.”

“Thanks!”

It was an early and merciful lesson in racial sensitivity. The next one would be nearly impossible to absorb.

Frances was older and unapproachable, and now I mainly remember how her straightened hair was drawn into a bun, revealing deep weariness. She rarely spoke to me, but Oscar brought laughter. Her son, Paul, was in his mid-twenties. Jerri curls bounced as he swiveled to flirt with teachers and scout for fun. He was always grinning, shouting down hallways, and whistling. Every so often, Paul would call in sick on a Monday. Though rarely profane, Oscar might speculate that, “Paul must’ve gotten into some bad pussy,” and then everyone fell out, followed by that delirious, descending scream.

But on one particular Monday, Paul didn’t call in or show up for work, and he would miss each and every day that came afterward, because he was dead! The police had shot him. Our school’s principal informed the entire staff, and it was a somber and shocking moment. Apparently, Paul had brandished a pistol as he tried to elude law officers, and the cops had killed him in self-defense. Afterward, Frances told the crew that Paul was shot through his back. I still remember her bitterness. I’m not sure that she would have known precisely how, and under what circumstances, he took his bullet. But now I’m thinking of the song, “Johnny Was”, by Bob Marley. The most poignant line asks a listener, “Can a woman’s tender care… cease toward the child she bear?”

A few days later, my own mother and I went to Paul’s wake and it was strange looking into his casket, with those curls spilled upon the pillow, and Paul’s face  immobile.

Fast forward five years. College was behind me, and I was in a touring, original rock band based out of Athens, Georgia. We played four nights a week throughout the southeast, and when I was home, I worked at a CiCi’s pizza. My duties included: taking bubbling pies from the double, conveyor-belted oven, spinning out a blur of reciprocal slices, keeping the buffet stocked, and answering a constant question: “What’s that?”, usually regarding the spinach and alfredo or the BBQ pizzas. I longed to reply, “Just try it, you unadventurous dolt! It’s a buffet!” I also took custom orders. I relayed those to the cook, usually a woman named Mayela. She spoke bare-bones English. But, I had paid atypically close attention during two years of high school Spanish, and my vocabulary ballooned opposite Mayela. I also gained fluency and gleaned a little slang from Fernando, the dough-maker in back, and then I synthesized all of it with chatty Latinas beside me on the buffet line. The managers—who rarely lasted long on the job—were always white men. The franchisee, a guy named Mike, was white as well, and Catholic. Only one of his managers even attempted Spanish.

Mayela and I grew close, developing a relaxed banter, and I made her golden fillings flash with increasing frequency. I learned that she was from rural Mexico, and that she and her husband had high expectations for their children, now that they’d made it to the United States. But, her health began to falter—something with kidneys—and a daughter took up as much of the slack as possible. Eventually, though, a woman named Fannie became our head cook. She had been a loan officer before emigrating to the US with her husband. He would start an auto mechanic’s business. Like Mayela, Fannie became a friend, and Danielle and I invited the couple to our apartment for dinner.

The franchisee liked me and wondered if I was management material, but I distrusted him and besides, my music came first. One day, I exploded in anger when I felt that he’d treated Fernando unfairly. “C’mon, Mike, have a heart!”, I yelled. He likely considered firing me for several long seconds. Instead, he said, “Jason, you don’t understand.”

Mayela missed increasing shifts. I felt an affection grow toward her until she was my Mexican aunt. I heard that she would need hospitalization, in order to receive a freaky procedure. After I got word that things had gone smoothly and she was recovering at home, I decided to visit.

Her daughter gave me an address, and I drove through the dusk of a Georgia winter, into a strange part of town. The apartment was busy with mustachioed men sizing me up and women staring curiously, wondering who this gringo was. I found my way into a bedroom and saw Mayela reclined, beaming but fragile. I don’t remember what we talked about or even if she returned to work afterward, but I’ve never regretted that visit.

Skip through another couple of years. I was feeling undervalued, even as thousands of fans admired my every move, expression, and guitar line onstage. I needed more money and respect than I was getting at CiCi’s. Then, my old buddy Jason —whom I’d once recruited to help me as a janitor—came calling. “Hell,” he said, “if you were smart, you’d come work for me and my partner, Shay.”

The two of them were finish carpenters, trimming out tract homes in the sprawling Atlanta suburbs. I figured that it would be a chance to learn valuable new skills, and to get some fresh air into my life. I was right on both counts.

The day that I first went to work as a carpenter, the task was building a new deck, rather than installing millwork. That was fine by me. Shay picked me up in front of Jason’s house, who was off grabbing lumber in the predawn darkness. As we drove toward the job site, I quizzed him about his life. He had grown up in Texas, in a landscape so flat that, “you could stand on top of a tuna can and see the whole state.” Shay had run framing crews for years, up against heat and dripping humidity. I got the feeling that my questions were slightly unwelcome at this hour, and at this early point in our relationship. He was intelligent and friendly, but I think he was used to a different breed of employee.

Once we’d arrived at the job site, Jason and a man named Luis were moving material toward the back of the house—a slippery pit of mud and construction debris. Our lumber was pressure-treated, or, as we say in the north, green-treated 2×10’s. They were long, wet, and heavy boards that were unwieldy and slick. I wasn’t keen on hurting myself straight away, and so I wrestled one of them at a time. Jason snapped gum beneath the brim of his ball cap, though. “Hey,” he said. “Take two at a time, all right? I just don’t want my partner to think that you’re slack.” Well, then. I see.

That first day lasted forever. I think I might’ve peed once. It was impressive to watch a large structure emerge from nothing, though. Luis didn’t know much English, but he taught me with pantomimes and gestures. I learned that clavos meant, “nails” and cortar meant, “to cut”.

Once we’d completed that deck, the four of us began trimming small houses between Athens and Atlanta. A fifth crew member, Antonio, joined us. He couldn’t have been much more than seventeen, and he was skinny with twisted teeth. He knew more English than Luis did, and I enjoyed practicing my Spanish with each of them. Luis was probably forty years old. He slept on the floor of an apartment with several other men who were focused on work. Every week, he sent leftover money to his wife, whom he’d left behind in Mexico. He had come to our country several years ago without papers, crossing a desert at night and on foot.

Luis was a man of big dignity. He saw himself as a sophisticate, although he came from a state in central Mexico, the equivalent of “flyover country”. He demanded respect from the younger guys whom he encountered. They often chafed at his ways. Behind his back, they called him, “el chilango de Hidalgo”, which very loosely translates to, “the Manhattanite from Montana.” He was unfailingly polite and gentle with me, though. For several months, my job was to nail in the baseboards or window casing that he had measured and cut. Eventually, I was allowed to operate a miter saw by myself.

Antonio went from a lowly installer to an independent carpenter, as well. He lacked confidence, though. Sometimes, when Shay would give him an assignment, he would immediately say, “no puedo”, or, “I can’t.” I reminded myself that he, too, had crossed dark wastelands to get here, and that he was only a kid, far from his home. One day, I gave him a ride in my Crown Victoria, from one job to the next. I popped in a cassette of Simon and Garfunkle, and we listened to, “The Boxer”, and, “Scarborough Fair”, neither of which he had heard. He was floored by their beauty, and, as we listened, I felt a hair-raising connection with him, a blurring of the boundaries between us.

After three years or so, I had a real sense of accomplishment. I read all of the books and magazines about construction that I could find, and I accepted any challenge that came my way. We were working on much larger homes now, and I got to make built-in cabinetry and complex balustrades. One day, Luis put his hand on my shoulder and said, “Senor Jason, apprendes mucho.” You learn a lot.

Antonio saved me from catastrophic injury. We were installing an attic access door in the ceiling above a catwalk, without any guardrails yet in place. When you put in an attic access, all of your attention is briefly focused overhead, your neck rolled back and both arms extended. You walk the perimeter of the access, holding it tight to the ceiling and nailing the piss out of the casing that picture-frames it. In that moment, you lack all spatial awareness of what’s around you, and where your feet are. After Antonio and I had secured the door, I took a couple of steps backward, in order to make sure that everything was straight and parallel to adjacent walls.

Something in Antonio’s face caught my eye: panic. “Cuidado, cuidado!”, he shouted. “Watch out, watch out!” He pointed behind me. I spun, and realized that I was about to tumble twelve feet onto a hardwood floor. Whoa!

There were other Latino men whom I befriended in the trades, but none of them measured up to Luis and Antonio. One character worth mentioning is Candelario, a fortyish guy who swept out the unfinished houses after each phase of construction was done. One afternoon, Danielle met him when she brought me my lunch. “My name is Candelario,” he told her, every bit the gentleman, “but the ladies call me Candy.” He winked as Danielle collapsed into laughter.

Some white guys in the industry resented the way that Latinos, many of them undocumented, were now dominating the trades. These “native” Americans felt that the foreigners undermined wages, while doing substandard work. I saw things differently. In my opinion, builders had once prioritized their legacies, which they guarded by hiring craftsmen with deep talents to fashion durable, attractive materials into sophisticated designs filled with intricate detailing. As a remodeler, in the later stages of my carpentry career, I got to do some archaeological analyses. I saw that those values had changed after WWII, and had then disappeared in the seventies. Now, the watchwords are speed, specialization, and maximum profits. They don’t allow for long-term concerns. They also mean that today’s carpenters have little incentive to become all-around “masters”, and that today’s builders hire whoever will do a narrow piece of work for the lowest price.

What I also saw: people of every race and legal status want to do good work, but they are pressed by their bosses and that larger, assembly-line system to, “let it go” so that they can move on to “the next one”. The main difference that I observed between white and Latino crews was that the whites moved at a frantic pace, looking stressed and unhappy, while the Latino crews were relaxed and unhurried, taking two-hour siestas, but then working up until dark in the summertime, something which their “American” counterparts refused to do.

Eventually, as I described in, “301 Monroe”, Danielle, Caleb, and I got an itch to move, and we hauled ourselves up to Minnesota. The main things that I miss are our friends. Many people think that southerners are backward, bigoted people. A few of them are. But, hatreds based on ignorance exist up here, too.

Circa 2009, I was at a family-reunion party for a branch of my Minnesota relatives. Amid deep greenery, I was seated and enjoying a bratwurst and some potato salad, when a group of four or five middle-aged men drifted within my earshot. They were talking about undocumented immigrants crossing our southern border. They perceived this as a grave threat, which I found curious, given that Minnesota is one of the more racially homogeneous states in the union. Plenty of white dudes were still roofing houses and pouring concrete, things that I didn’t see in Georgia. One of the men said, half-jokingly of the unwelcome immigrants, “Maybe we should just line them all up and shoot them.” I heard laughter. Suddenly I wasn’t hungry anymore. How could I begin to tell them?

After we moved, I kept tabs on Luis and Antonio through Jason, my old high school friend. Jason and Shay eventually went their separate ways. Luis still works for Jason, on multi-million dollar homes now, and is his most trusted employee. Antonio stayed on with Shay for several more years. Shay paid, out of his own pocket, for Antonio to get his teeth straightened. It seemed to help with his confidence. Now, he and his brother have a subcontracting business.

In August of 2015, four months after my diagnosis, my whole family took a trip to the South. I described it in, “So Then”. But, I didn’t mention meeting up with Luis and Antonio at that riverside party. Since moving to Minnesota, my Spanish had nearly rusted shut, and it was hard for me to communicate with them. Thankfully, both of our boys are fluent speakers due to immersion school, and Caleb was able to be my translator. I asked him to tell my old friends that I missed them, and to break my grim personal news. It was hard for all of us. On a brighter note, Antonio looked great! His smile was perfect, his body had filled out, and now he even had a girlfriend! I was elated for him.

A few months ago, Jason came up to visit, and he told me a great story. He and a contractor friend had invited Luis to meet them at a performance by the old-school, grounded country musician, Dwight Yoakum and his band. The venue held Latino dance nights that Luis apparently frequented, and he had all of the proper duds that a “caballero” would want for such occasions. When Jason entered the room, a well-dressed gentleman approached, all smiles. Jason smiled back uncertainly, and started to brush past the man. “Senor Jason!” It was Luis, unrecognizable in this context.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

What it Means

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In their surgical role, the clamps gripped slippery blood vessels, and when Blaine produced those tools to hold the joint we were finishing, I giggled. I was already laughing at something else that wasn’t funny: my boy’s posture. He would have looked about right on a recumbent bicycle, but he didn’t belong behind the wheel of a ’72 Camaro. We’d soon hoovered all of the pot, though. Then, my last name became a hinge; a pivoting, creaking reveal, as Blaine said, “Carr… wanna go for a ‘Rooster’ drive?” I studied the hood’s tangerine steel. “Hell, yeah”.

I was eighteen in that spring of ’93. Carlos Castaneda and Hunter S. Thompson topped my reading list, and hair fell halfway down my back. I wore hyper-bright shirts and beaded necklaces. But, beyond my family, adults didn’t seem to see me. Other kids said that I was smart, though, and I let them copy from my test papers.

The Camaro was carbon black on its inside. The upholstery smelled of sun, but Blaine dropped his windows and drew the cooler nighttime air, as we heard his pistons mix with the hoots and cries and titters of the hundred-plus teens around us. The park was no longer a shelter for those in the know. Its riverside trails and its wide, grassy fields waited past a gate that didn’t lock. The word was loose, and now amateurs overran the scene. “Aww, man,” sighed Blaine. We crept through the U-shaped lot toward its exit, halting behind a gray Grand Am that blared Nirvana’s “In Bloom.”

That sound was rudely alive, and not some commercially arranged bouquet. “In Bloom”, off of the album Nevermind, is widely taken as a slam on the shallow, trend-driven consumers of music that meant everything to its makers. The band’s guitarist, singer, and principal songwriter, Kurt Cobain, had expressed regrets and disorientation after his explosive success. He didn’t mean to speak for anyone, let alone a generation. He hated how journalists picked at his art. But, he really was everywhere, like it or not, and there must have been a reason. Let’s consider the snippet that issued from that Grand Am.

First came a verse. “We can have some more,” stated Cobain, his voice entwined with the bass line. “Nature is a whore.” I see Matthew McConaughey’s character in Dazed and Confused. In case you missed the film, he plays a twenty-something dude still goofing with teens. Watching nubile juniors bounce past him, he declares, “That’s what I love about these high school girls, man. I get older; they stay the same age.” Doesn’t sound profound? But what of professionals, then—from doulas through to deans—who work the wellspring? Do we know that they’re wiser to its flipside? How so?

Cobain was back. His guitar entered the mix, and now his voice was rising. “Bruises on the fruit,” he alerted us. “Tender age in bloom!” I leaned to check myself in the side mirror. Was I seeing Peak Me? No. I had to get clear of the yakking; this empty noise all around me. Some of these other kids had ambition, and maybe they knew precisely what they wanted, and how to get at it, but I sure didn’t. I first needed adventures, and wouldn’t that tend to preclude initiations and plans? And, the resulting stress tests couldn’t be coldly scored against others’, could they?  I didn’t have a competitive urge. Well, maybe I did wish to pay the most attention; to see the granular surface of the world and then… through it. I wanted to perceive, rather than achieve.

Cobain roared with release as his chorus flew. “And he’s the one who likes all our pretty songs, and he likes to sing along, and he likes to shoot his gun. But he… don’t know what it means. Don’t know what it means.”

Now, Blaine and I could finally leave the park behind us. We went wrapped in the rumble of a vintage Camaro. I felt like we defied the trappings around us: the plastic gas stations, the endless subdivisions with laughably bucolic names, places where adults had penned and then fattened themselves. We began to trace a rectangle, miles in outline, that would snap closed over sequenced hills.

Blaine fished in his glove-box for a disc: the album Dirt, by a band called Alice in Chains. The record doesn’t relent. Jerry Cantrell’s guitar tone is sinew and grit, and Layne Staley’s vocals are uncommonly emotive. Only Cobain and Chris Cornell, of Soundgarden, could match his power at that time. His and Cantrell’s voices could also blend in sinister intervals, leaving a listener feeling something like the need to break a raven’s gaze. The band’s style is not for everyone. A high school friend of mine deemed it “sleazy”.

Whatever you may think of the overall sound, I think it’s difficult to deny that “Rooster” is the album’s—if not one of rock’s—most rousing tracks. Part of this power comes from the song’s unusual subject. Cantrell wrote the lyrics to honor his father, a veteran who served on the ground in Vietnam, amid grasses that topped a man’s head, prowling tigers and insurgents, and jungle-covered mountains. The Rooster.

Blaine pushed the disc in and toggled to the track’s solemn start: clean, spacious chords, melodic bass, and high, wordless lamentations. Then, a meaner species of guitar snaked from the shadows, and Staley began a soliloquy. “Ain’t found a way to kill me, yet. Eyes burn with stinging sweat. Seems every path leads me to nowhere.”

We were now on that stretch of road where we’d find our kicks. The pavement was dead straight, it met no neighborhood entrances, and it hit hill after hill—none of them huge, but suggestive of the late-middle section of a roller coaster. “Yeah, buddy,” said Blaine, but with such bleariness in his voice that I looked over sharply. Then he gunned that magnificent engine, and the lighted dials showed needles flicking clockwise. We were soon going more than one-hundred miles an hour. Blaine turned the music up as we hit our first hill.

“Wife and kids, household pet. Army green was no safe bet. The bullets scream to me from somewhere.” Back then, I didn’t know much about the war in Vietnam. I had not yet read firsthand accounts, from both sides, of the ferocious meeting at Ia Drang. I had not yet digested the novel Matterhorn. I had not yet viewed each episode of Ken Burns’ documentary with my boys. I had not yet met any veterans of that conflict. Still, I knew that those people had borne a wider and a heavier spectrum of emotions than I could imagine, and that their countrymen had often scorned them back home. I knew that many of the vets had been dragged into the grinder, while others had felt an obligation to lead, even when they knew that the larger cause and strategy was deeply flawed, even rotten. Someone had to do it.

“Here they come to snuff the Rooster, oh yeah.” The bass guitar gained urgency, the high-hat snapping at crisp intervals. “Yeah, here come the Rooster, yeah!” All of the instruments turned molten, surging over us. “But ya know he ain’t gonna die!” I saw Staley, his torso bent backward in desperate effort, as if trying to rile an impassive god above. “No, no, no, you know he ain’t gonna die!”

Cantrell stepped on a wah pedal, elaborating on a riff until he and Staley were ready; steeled to rejoin two jacked-up platoons probing for the underbellies of their foes. “Here they come to snuff the Rooster, oh yeah, yeah!” I felt my scalp crawl involuntarily. But a car was ahead of us; in front of us; going so slowly. Blaine pulled into the opposite lane just as we entered a dip between hills. Starting to climb again, a wash of light appeared upon the crest. Oh, shit! Blaine’s thigh hardened as he tried to press the gas pedal through the floorboards. The engine sounded angry, then scared, as a higher frequency grew audible. We were clocking one-hundred and thirty miles per hour. Was the car that now rolled right beside us speeding up or something? Why weren’t we past them, already? Were they going to get us killed?

Now, the onrushing headlights were direct, drilling into our brains. Neither one of us yelled, or had any last words. When the opposing car was forty yards away, it veered off of the road and into a shallow ravine. Blaine swung back into the right lane, decelerating in front of the car we had just passed. I spun over my left shoulder, seeing brake lights at the bottom of the ditch, the vehicle appearing intact and upright. We didn’t go back to help them.

Back in the raucous parking lot, I don’t remember climbing out of the Camaro and walking to my parents’ Volvo. I do know that I sat for a long time, breathing and trying to stop the quivering in my body. That had been incredibly stupid. But it had been an adventure, and wasn’t that what I wanted? Throughout the remainder of my life, I would take chances—arguably smarter ones, of course—and trust in the cosmos. Eventually, my adventures became commonplace: marriage and fatherhood. But, it was a life still filled with unpredictables, engaging my curiosity and spirit. But then came my diagnosis. A pair of oncoming headlights was again in my lane, ones that wouldn’t be veering off at the last minute. I was, well, fucked. But, over the last three years, I’ve often thought of the Rooster. I wasn’t drafted into a deadly nightmare at eighteen; didn’t have to bleed out into the dirt of a foreign but beautiful land; didn’t have to live with painful memories. I have had it pretty damned good. As ALS comes to snuff me, I remain grateful; perceptive; defiant. And, maybe most importantly of all, I see this strange process as an adventure. Why wouldn’t I? What if I had been so busy planning my work and working that plan—before my diagnosis—that I hadn’t noticed the simple, deep things? I surely won’t stop noticing them now.

Previously, I named three singers of exceptional power, who earned my admiration in the early nineties. Now, each of them are dead by their own hands. I have to wonder, why they couldn’t find sufficient adventure in their own lives, to make them worth living?

 

 

 

 

 

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Wintry Mix

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“Have you always looked for the silver lining, or is that something that ALS has taught you to do?” The chaplain faced a bay window, and I held the foreground of her view toward the south. She played a part on my home hospice team, as one of several women who had been visiting Danielle and me. They cared for us through the disciplines of nursing, social work, massage, music therapy, and even bathing. Still, being irreligious, I was wary of the chaplain’s intentions.

“I guess I’ve always thought that way,” I said. We’d been discussing my reaction to losing reams of new writing, work that I’d produced through a miraculous, yet tedious process: typing with my eye movements alone. Thousands of words had vaporized in two separate incidents. The device which I used could be glitchy, and I was pathetically inept with all things digital. The mix wasn’t pretty. I had to keep trying, though, if I ever wanted to produce much of anything creative, ever again. I felt that resurrecting the deleted paragraphs had improved them. The chaplain seemed impressed with my bright-sided mindset, but I conceded that it had limits. I told her of visiting our younger son’s school, for third-grade presentations on engineering breakthroughs. Hollis had chosen the wheelbarrow. It was January in Minnesota, and after rolling up a switch-back ramp and through doors held open for me, I tipped back in my powerchair, waiting for the fog to leave my glasses and for blood to return to my atrophied hands. I wore a ski cap, and, from my previous life, a work jacket flipped backwards, so that its rear protected my chest and the embroidered name hid in my armpit.

Two other parents and a vice principal approached us. “How have you been?” one of them asked me, and I hesitated. “Not bad.” Next, a long time administrator left the office to stand beside me, her face high above mine. “Hollis is so excited that you’re coming today. ” This made me well up, and I fought for the surface as the well-meaning woman retreated, her lip quivering.

Danielle and I entered the lunchroom and its residual smell of tacos.  Tables had been arranged so that guests could flow easily, but might stop at exhibits which intrigued them. The room was loud with small voices. Straight away, I spied kids who had known me since their preschooling. Some faces had stretched unevenly, as if teeth and nostrils were pushed into rising dough. Then I saw Hollis. He had already moved out in front of his table, and we came together in the middle of the room. He hugged me hard around my shoulders, kissing my neck and then my cheeks, repeatedly.

The envy that followed was formidable. During the next hour, I imagined other parents fretting over dinner plans and office politics and their airless marriage beds. But, they had their health, did they not? Then, they had everything! They should all be grinning like idiots!  Some of them were.  The distractions were all the more galling, because I wanted to be the person in that room who was the most present, and, therefore, maybe the most alive.

I told my chaplain about the envy. I explained how I’d moved to expunge it, with gratitude for what I’d already lived and still possessed. She nodded, but then she said that gratitude was trendy in self-help and therapy circles. I wondered what that was supposed to mean.

In a larger frame, the episode showed my family facing tragedy. This had raked me, until sorrow sharpened upon my hardest parts. “So, do you allow yourself to fully feel that sorrow?” I answered yes, and that music got me there. “Which music do you use?” She herself had once been a music therapist, in the days before her own crisis. “A big variety,” I said, “but the best might be Bill Evans.” Her eyes widened, despite the light from the bay window. “The jazz pianist?”

Yes, that very one. I’ll explain in a bit, but first, let me list more of the artists or songs that I use when I need to access a healing sadness. Some of my picks will make your own eyes widen, or you might even groan, but hear me out.

Mark Knopfler: “Dream of the Drowned Submariner”

The former Dire Straits frontman has a way-tasty style. Think of the score for The Princess Bride. His understated work has a caressing, but masculine quality, like a horse-whispering uncle.  The lyrics of “Submariner” evoke a limited hereafter.

Shirley Horn: “Come a Little Closer/Wild is the Wind”

Miles Davis claimed her as his favorite singer. Her voice speaks of fine spirits, furs, and laugh lines. Here, one piano chord bleeds into another, while she yearns for human connection.

John Denver: “Sunshine on My Shoulders”

Both of our dogs take medication, pills that we tuck into cheese out of plastic sleeves. Many people liken this man’s music to dog cheese, limp and devoid of authenticity. But, Mr. Denver’s earnest song can make me cry. So sue me.  I think that it’s his delicate repetition of the word “sunshine”.

Natalie Merchant: “Kind and Generous”

The gratitude thing again. This song came along before any trendiness, though. Who do you think she’s addressing here?  Who would you thank?

Marty Robbins: “El Paso”

It’s got the lilting melody, the high, stacked harmonies, some great guitar work, and the story. I get nostalgic for a life I never knew. Caleb and my dad are fans, too.

Sade: “No Ordinary Love”

Danielle and I have shared twenty-three years, yet friends and family second-guessed us, at first. My old bandmate, Jeremy, was into Sade. He often volunteered for the overnight drives toward home, after our Saturday gigs. Maybe he wanted to be alone with his own melancholy thoughts. He and I had a real bromance, and so this one makes me think of him, too.

Nick Drake: River Man

I prefer the version from The John Peele Sessions, where it’s just Nick and his guitar. He had a unique approach to tunings and time signatures. There are shimmers of dissonance.  I’ve been dreaming of rivers, and I think that this song is about time, as well as the suffering that comes from living in it.  “Oh, how they come and go,” sings Nick. What do you think?

Bill Evans: Blue in Green, Take 3

This is the daddy of them all. The song first appeared on the 1960 landmark, Kind of Blue.  The story goes that Davis handed Evans a paper with a few chords written on it, saying, “Make something with these.”  That version is devastating, and worthy of meditations. Evans recorded a handful of different takes with his own muscular trio.  This is my favorite, because it manages to both linger and swing.  Being an instrumental, the listener has to make his/her own meaning, but I hear it as a companion piece to “River Man”.  I also think that reading “Tears, Idle Tears”, by Alfred Lord Tennyson, illuminates the music.  Again, it’s the grasping after a moment, a friend, or a doorway now closed.  Truly a divine despair, this death in life;  this blue in green.

I made an appointment with my chaplain to meet in two or three weeks, when we might go further; when our conversation today might bring more questions.  All of these songs are available on YouTube or through Alexa.  I encourage you to use music in the way I have described here, and to let sadness bring healing.

 

Sawmill

I don’t make dinner reservations, on principle. The practice smacks of incurious assertiveness. I’ll admit that in the dance of fine dining, or for a joint that jumps on Friday nights, it’s probably the thing to do. But typically, when you surprise a place, you’re looking at a thirty minute wait, tops. Would it kill you to grab a drink at the bar? You could look out across the room, where first dates play against the kitchen frenzy, and dig the periphery of a meal.

To be fair, though, I must also admit that I can barely bring myself to call and order a pizza sometimes. Part of this involves my shyness, or rather distaste for so abruptly engaging a stranger. But it’s also not wanting to ask; to involve others in my needs. I’d just as soon make my own pie from scratch.

So I find myself listening, wincing but appreciative, to Mac’s effort on behalf of us all in the fall of 2010. Before he risked his name in real-estate, Danielle’s dad joined theatrical productions, including the small-stage debut of a musical called Grease. He modulates his voice readily. I don’t think he’s even aware of it, but while he’s working the phone, the phrase, “an iron hand in a velvet glove” enters my mind. On the call’s other end, the hostess can’t let herself be glib. Mac says, “So, again, that’s ten of us coming at six o’clock and, won’t you tell me your name, please? Thank you. Tracy, I’m hopeful you can promise me that your prime rib will be available to us this evening… Yes, and I say this because we all agree that it’s your best offering, but, a year ago, when we last had the opportunity to dine with you, we learned that the kitchen had run out just prior to our arrival.” He pauses. “It truly saddened us.”

A half-whispered husk, this closing leaves the hostess no room to maneuver. She promises. See, the rib is really that prime, and I always order it—or try to—on our annual visits. Once, I did go for a strip steak. I enjoyed it, but regrets tailed me for days. When you find something so right, why stray? 

The Sawmill Inn has operated in Grand Rapids, Minnesota, since 1973. A century before its first dinner rush, felling began in the big woods. Virgin white pines jammed the high reaches of the Mississippi, and when the logs met whitewater they called for a town’s founding. Who would guide them through steam-driven saws, and into flat afterlife?

Our drive from Hill City, where we’re spending the weekend, takes us through scrubby state forests and over Pokegama Lake. After parking, we climb cement steps to a portico, where overnight guests unload and push through glass doors. The sense of lived-in comfort and class grabs you. A hearth sits on the left, surrounded with stone and fine taxidermy. There’s a carved pine viking straight ahead. Our hostess guides us to the right, through a wood-paneled partition hung with photographs of mules and mud; tin roofs and a million sticks. We meet a waft of baking bread, and then onions sizzling in fat. Everything’s ambered and warm.

Mac orders an iced tea for Janine, and for himself, a dry Rob Roy. Danielle needs a dirty Martini, and Chole a Cosmopolitan. Mike wants beer. It’s whiskey for me, an Old Fashioned with bitters and simple syrup. The kids ask for Shirley Temple’s. When the drinks arrive, we can smell them.

Janine twinges, though she’s abstained for seventeen years. “Let me tell you all a story about this place,” she begins, as a smile further defines her cheekbones. “This must have been… when Danielle was in her final year of high school. I know that Cholie was off at Lawrence. Danielle and I were standing in the lobby after having had dinner here, and…I suppose that Mac must have gone to get the car. You kids know Dorothy, from The Wizard of Oz, right? The actress who played her in the film, Judy Garland, was born right here in Grand Rapids. They’ve turned her childhood home into a museum, and I guess there’s a festival every June, so the town attracts fans, as well as anyone who ever had the slightest thing to do with the movie. At any rate, Danielle and I are standing there, and I slowly realize that maybe…a dozen little people are milling around us.” 

Ten year-old Isabel breaks in. “Wait, what are little people?”

“They’re midgets, honey. Dwarfs. They’re adults who, I guess for genetic reasons, never reached a normal height or size.” Isabel’s unsettled, but Janine continues. “If I hadn’t been sober, and acutely aware of it, I might’ve thought, ‘Aw hell, Janine, you’re seeing things’. But they were all…of a certain age, you know? We finally put it together. They were the last of the Munchkins, having themselves a reunion. Seeing them was just so strange, and so cool!” She chuckles at the memory.

Isabel draws another question from her straw. “So, then what happened to Dorothy?”

Janine rocks forward and back, blinking her large, agate-like eyes. Her voice is on the edge of catching. “She lived a tough life, sweetie. She had…that pure singing voice, and those girl-next-door good looks, but she was insecure. The movie studios were partly to blame for that, giving her tobacco to suppress her appetite during the shoots, and even uppers and downers—drugs, honey—to supposedly ‘help’ her keep to the production schedules. I think they took away her equilibrium—her balance—and she never could get settled. She married four or five different men, and none of them stuck.  She died young. In her forties.”

Isabel tries to swallow this. Chole looks upset. She would sooner skirt or soften such hard truths, and now she’ll have to deal with fallout and the follow-up questions.

Thankfully, our server returns. We didn’t need to study our menus much, and all of the adults order the prime rib, in different sizes and final temperatures. Sauteed mushrooms and onions on the side are no-brainers. We agree that Caesar salads should lead things off, and we each get to choose a form of potato, ranging from baked to mashed to au gratin. The kids order chicken fingers, fried shrimp, or buttered noodles. Chole chooses a cabernet sauvignon, probably J. Lohr, for us to share.

As our orders find the kitchen doors, a basket of popovers lands on our table. Popovers are ultra-light dinner roll/muffin hybrids from a blazing oven, with seared brown bark on the outside and hollowed, steaming, glutinous goodness within. We have three options with which to dress them: whipped butter, seasoned sour cream, and raspberry jelly.

Our salads arrive, and though it’s applied sparingly, the housemade dressing packs raw garlic and the salt-bombed umami of anchovy. As we take our last fork-fulls, we learn that the rib is inbound.

I have the “king” cut placed before me on a white plate, along with mashed potatoes, a small cup of creamy horseradish, and an edible flower, carved from purple and white vegetables. I swirl my wine, inhaling. The mushrooms and onions go around, we toast our good fortune, and the table falls silent.

I like my rib cooked medium. Whoa, let me explain! This way, the outer lip of fat melts into the “done” portion beneath it, full of earthy soft shadow along with the mushrooms. Like the chiaroscuro painting technique of old masters, it’s a foil to the bright horseradish. Feel me, now? The red complexities of the wine further transport us. The potatoes are toothsome and textured, with a bit of skin included. A kingly meal, indeed.

As the plates are cleared away, we get a complimentary selection of sweets. They’re sticks the width of cigarettes, flaky chocolate covering hard, opaque candy tasting of mint or fruit. Mac studies the bill, his eyebrows working, before he signs with solemnity. We all thank him. He takes pleasure in providing this yearly experience, and even if anyone else offered to pay, he wouldn’t have it.

Not that Danielle and I could afford to treat everyone, let alone ourselves. The great recession has lashed us badly. Our positions and industries were exposed, unlike those of Chole and Mike. I wouldn’t be happy at their jobs, but for them, security is paramount. In their young twenties, if not earlier, they’d called ahead. They’d made reservations. 

On the way home, I think about the towns of Grand Rapids and Hill City, and the region’s ethos. It seems that echoes of the timber boom still touch people here, maybe in the way that radiation from the cosmic “Big Bang” shows up on untuned televisions. We stop at a gas station, and I study a man, looking to be in his mid-thirties, filling a pickup. I wonder if he thinks consciously of that time when, if a fellow had heart, he made his way into the forest to harvest God-given trees in His country. Perhaps he imagines, over a winter’s drink, the push and pull of a two-man saw. It bites ever deeper in the frozen wood, until wedges are driven behind it to keep the blade from binding. He looks for vibrations in the tree’s tip. Fine crystals of ice prick his upturned face, and their refracted light shines into him.

Perversely, this man finds himself praying for attorneys and financial fuckers to come up from the Cities, looking to be led to fish and game they aren’t worthy of. Once, he’d listened as two of the jerks ran their mouths. “Can you imagine,” one had asked after casting, “what it would be like up here if they’d left the old-growth intact? I mean, even half of it?”

“God, I know! They completely squandered that. It’s not like anyone in this town got a piece of the wealth. It went to the lumber barons and the railroad men. Talk about the one percent!”

The two men had laughed while their guide fumed. What could these guys know about surviving here, and about the intricate, enduring beauty that sustained his spirit? They probably worked for the very corporations that were supposedly too big to fail. Their trip might even be a team-building exercise, sanctioned and paid for by bigger wigs. Well, there was an election around the corner, a mid-term, and their guide would be voting. He’d be voting his ass off.

Did you know that a humble crosscut saw can sing like a violin, when it’s coaxed with a bow? The handle is held clamped by the player’s legs, while he or she bends the blade into an s-curve by gripping its tip. Through manipulation, the tones of the western scale are found. Often, however, saws are musically used for a particular effect. They’re known for a keening, quavering, ghostly voice. Fittingly, it makes me now think of “Over the Rainbow”. The song’s final line haunts me: “If happy little bluebirds fly beyond the rainbow, why—oh, why—can’t I?”

The Music in Me

The singing quit. It stopped without comment, and so my mom took a peek. How cute! Along with the pressed black vinyl beside me, I’d spiraled down to sleep. Mom left my steady breath in the bedroom. American Folk Songs must’ve helped me make sense of kindergarten, because Pete Seeger’s album was a daily hideaway. 

Once I felt more expansive, I picked up an orange transistor radio, with a telescoping antenna. Each weekend, it gave me Casey Kasem and his countdown. This was the early eighties. The show beamed from coast-to-coast, and with its long-distance dedications, it seemed like everyone was listening. A singular album, Thriller, had us all in its thrall. Do you remember my old P.E. teacher, Mr. Beal? His jump-rope team would headline school functions. As if enacting a badass ritual, his kids met the opening peal of “Beat It” under blacklight, their faces purple blurs as the ropes snapped faster, and faster still.

In grades six and seven, I played the trumpet in band. I got the fundamentals and the team feeling, but I knew nothing of horndog funk or jazz at that time, or I might have stuck with brass. Instead, aluminium cans went dat-a-boom thunk! from vending machines. Like Sprite, with its citric fizz, the sound of current music could be both fake and refreshing. While it might not touch true thirst, who cared as long as life was bikes and diving boards, and Nintendo’s tunes looped through me?

We moved before I entered eighth grade, and another new kid named Sergio said, “Man, you have to hear, ‘Welcome to the Jungle’.” It seemed that I’d better evolve, and fast! Silly though it is, Guns N’ Roses helped set the course of my life. In the school gym one afternoon, a band of five guys my own age turned “Sweet Child O’ Mine” into a siren. I panicked with ambition and envy. Two houses up, Ben and Dave Rushing had a black electric guitar and an amplifier, some M-80 firecrackers, and free weights. We cranked Appetite for Destruction that whole year. Sick of being skinny, Ben counted bench press reps while “Night Train” rolled just beyond his walls. That black guitar called me. I had to make something like this spitting, prideful music, and I thought I might have the hang of it. I needed guidance, though. For over two years, Lisa Purcell schooled me in the back of a small music store. She told me to bend the guitar strings; to make them squirm beneath my fingers. I’d sound like I knew what I was doing.

She laughed as she led me to the fathers of raunch rock, and soon Led Zeppelin, AC/DC, and vintage Van Halen came strutting from my speakers. “Mellow is the man who knows what he’s been missing,” sang Robert Plant. “Many, many men can’t see the open road.” Lisa hooked me up with John, another student of hers, and I joined my first “real” band. We never got a gig or even a proper name, but one of our originals, “Why Do You Sleaze?”, always gets them rolling. It’s a fair question, right? I don’t recall just how we all parted, but my tastes changed.

I hadn’t known jack about music from the 60’s and 70’s, which was inexcusable, given my parents’ record collection. I dug deep into Cream and Jimi Hendrix. I had also found the novels of Stephen King and, alone in my bedroom, I read his eerie and mythic It to the sounds of Are You Experienced? Talk about some synergy! Lisa now thought I’d learn the formal chemistry of chords and harmony, but I couldn’t grasp music at that level of abstraction. I slid right off of it, the same way as with algebra. Where were the goosebumps?

Whether I was with my friends in our cars, or with my head clamped between headphones, I used music to ensure a proper cabin pressure. Clenched riffs could quickly ease for Pink Floyd. I loved that band’s grandeur, and the glinting knifework by David Gilmour on guitar. Cut up before I knew it, I watched Roger Waters reach into my notions of time, money, mother, and walls. Those guys had made songs that lived independently. What would I make myself?

The visual arts moved me more than before, and Salvador Dali was the shit for me then. I learned a bit about psychology and symbols, and took every art class that I could, relaxing with the craft and camaraderie. I admired work that was intricate, or quirky and playful. I discovered the poster artists from 60’s San Francisco, and they led me to The Grateful Dead, who built their best albums from the heartwood I’d loved as a boy. Onstage, though, a near fetish for the present drove their group improvisations. They won some and they lost some. This tension drew me through linked books: The Electric Kool-Aid Acid Test, One Flew Over the Cuckoo’s Nest, On the Road, Look Homeward, Angel. 

I got the guitar of my life when I was seventeen, paying $600 for a ’75 Les Paul Recording. It was special in several ways, with more complex electronics and edgier lines than a standard Les Paul. Upon its neck, rosewood joined mother of pearl, and the body was butter-colored. I plugged it into a box of mountaintop sounds. By this time, Lisa had moved on. I tried another teacher but for him, music was quantifiable, like a psychiatrist tightening life to levels of dopamine and serotonin. He had no poetry. I would find my own way, putting open-ended songs on my stereo and blending into them, getting comfortable with scales and modes and flavorings, seeing patterns on the neck that I could slide up or down in the situation. I practiced “lead” guitar most often, working on phrasing, improvising, and building a head of steam. Friends came by to listen, lying back on my bed, and they said I sounded killer! Sometimes, kids I didn’t know too well would ask me if I played, as if I had a reputation. It felt good. But I needed compadres. I needed my own songs, too, not just licks and tricks.

I got an acoustic Fender 12-string with a bright, shimmering sound, taking it out with my boys as we sat on park benches and jammed. Ben would sing sometimes, right on pitch and with full-throated soul, but he had trouble with timing. I could feel him bristle when I hurried to catch his too-hasty phrases. Another buddy, Ryan Graham, brought a six-string with him. His dad, Jim, played with callused hands and sang in a baritone. Jim introduced me to John Stewart and his sepia-toned album, California Bloodlines. Ryan honored his folksy heritage, but he also loved punk, ska, and electronica. He played in a band called Stigmata for a while.

When I started getting high, I especially loved how it enhanced music, giving it greater resolution and impact. It was the difference between a great work in a textbook, and that same piece on a museum’s wall, where you see the built-up paint and brushmarks. I remember driving to an out-of-the-way spot with Ryan, beside suburban woods. We were close to the river and plants pushed around us. After two big bowls, we reclined the pickup’s seats and cued up The Cure, a live take of “Pictures of You” bouncing through the canopy overhead. I could’ve been floating in warm water. Robert Smith sang, “I’ve been living so long with my pictures of you, that I almost believe that the pictures are all I can feel.”

Increasingly, my conceptions of myself and my future were tied up with art. I needed the dreamy, sensual support of these images, but was that, well, masturbatory? I just didn’t know if I had real talent. I had to find out, though. What else could I do?

To be continued…

Scott and Shaun

 

Twenty days past diagnosis, Danielle and I parked for our first support-group meeting. I was glad for the laughs still springing between us. They would keep me brave in the coming years, but I surely needed them now, as custom vans deployed their ramps nearby. I could see where the flaw in my walk was heading.

Within the brick building, Anne and Jennifer took our hands. They represented the ALS Association. I saw kindness in their eyes, along with some surprise and maybe anger. We were young for this club. They gave us nametags and we sat at a ring of tables.

As others joined us, my gaze roamed around until it rested on Danielle, and then on what had made her chin quiver. She watched two men. The one in the wheelchair docked at the table opposite us. His wistful face was fine and quite still, like he came from a painting, but his shoulders heaved steadily. His companion wore heightened expressions. He fussed with their straws and water bottles, making sure that his friend was settled and comfortable. I turned back to Danielle and she shook with silent tears. Whoa! I put my arm around her, feeling awkward and exposed and then ashamed for our self-pity. The woman beside us wrote on her dry erase tablet, turning the words so we could read them. “You’re one of us now.”

After Anne kicked off the meeting, formal introductions went around. At his turn, the man in the wheelchair—one of several there —spoke in clean blocks between his breaths. “So, my name is Scott, and I have ALS…I was diagnosed about two and a half years ago at HCMC…I’m glad to be back here with all of you and…I’m pumped that it’s spring again.” Retracting his shoulders, he pulled air as he looked to his friend, who mugged reflexively. This guy didn’t seem comfortable, but his voice was sassy. “Hi, I’m Shaun, and I’m Scott’s husband and his caregiver.” His forehead furrowed until the next guest spoke.

After the pleasantries, a nurse talked on this horrific illness. Anne whispered that Danielle and I should feel free to ask dumb questions, but we declined. I didn’t like to speak up among strangers, and my introduction had been harrowing enough. Shaun and I could relate. Besides, I had learned a heap of gritty details through my own research, even before diagnosis. What I didn’t know, and what the nurse probably couldn’t tell me, was how to deal.

At intermission, and before we cleaved into two separate groups, one for the sick and one for friends and caregivers, I rose from my chair. Scott was alone for the moment, and I approached him. “Hi, Scott. It’s really nice to meet you.” I extended my hand, but his own stayed motionless. For a second he seemed like a dick, but then I realized my error! I cupped his knuckles, squeezing softly.

Scott soon became a mentor to me. As disease hushed his body, he turned toward others. He wanted to know how Danielle was holding up, and what progress I was making in the renovation of our home. He asked about our boys and spoke of the bond that he had with his own niece and nephews. Oftentimes, his response to my news was, “That’s really great, Jason.” He meant it.

Slowly, I gathered his backstory. He was born six years ahead of me, and in Farmington, Minnesota. His precise and orderly mind had drawn him into accounting, and he got an MBA and became vice-president of finance at Pearson. He had met Shaun nearly twenty years ago in a dance club. They were actually married twice, the first time with the ocean as a witness, and then again in Minnesota, with full legality. Scott had loved to run trails around city lakes, until an odd weakness in his thighs brought him to a doctor’s office. Shockingly, he would learn that it was terminal.

Inside of our stricken group, Scott got heavy. He said, “It really bothers me that my dad comes over to shovel our driveway. I mean, I should be doing that for him.” This went beyond humbled muscles. ALS had snatched away my notion of a rightful life-cycle; of a full and proper human journey. I wouldn’t finish raising my sons. And a decade from now, I wouldn’t be Mac’s man around the house. I would never clean his gutters, adjust a door, watch the game with him, and kiss his silver whiskers, wishing him well until I returned. I still had so much vitality left, and now I have to wither? Sometimes I jerked awake in darkness, and blinking neon spelled: Helpless Early Death. I’d cry so hard I couldn’t breathe. But Scott, he would learn to make peace with unfinished business. He would find that giving and receiving help could fill his days. People poured love over him, and they did it for their own joy. He also didn’t have to worry about leaving things unsaid. “I just appreciate getting to tell people how I feel about them.” I wondered if I, too, would jujitsu-flip the despair stalking me. Would you?

In that other supportive sub-group, Shaun and Danielle grew tight. They shared a sense of humour, and he described how he used silly songs to distract a man who didn’t want things done for him. He advised Danielle to compartmentalize her roles and her feelings, and to stay focused on the task or the moment at hand. Still, he knew what would ultimately come. And when Danielle asked him how he might possibly move on, he sagged. “You don’t understand. We had it all planned out!” 

Along with Scott and Shaun, Danielle and I decided to be a part of ALS Advocacy Day in Washington, D.C., in May of 2016. I was now a full year past diagnosis. The night before we’d meet with politicians, the four of us went to dinner at The Occidental. The food was elegant and our conversation light, and I realized that we’d never socialized outside of the support groups. I watched as Shaun broke from his own meal to give fork-fulls to Scott. I noticed how Scott’s shoulders pumped urgently, and how Shaun placed a bi-pap mask over his husband’s face so he could catch his breath. At the end of the meal, the server took our picture. It captured us happy and hopeful, and we looked like good friends.

The next morning, I was thrilled to point my scooter up Capitol Hill. We went with a third young couple, Clay and Jana, who faced ALS and wanted a piece of this moment. The same went for two sisters who’d lost a parent and a grandparent to the disease. Apart from our little unit, people from every state in the union were converging to ask for specific and coordinated legislation.

Our first two meetings with U.S. Representatives went well, but we thought that the next one might have a different feel. Rep. Tom Emmer had recently replaced Michelle Bachman, a tea-party warrior who’d retired after four terms. Emmer came across as a feisty foe of taxes, spending, and regulations, and I wondered if he’d agree that our cause merited the governmental actions we proposed. Scott and Shaun even worried that their presence could hurt us with him. You see, Rep. Emmer had worked to advance a constitutional amendment in Minnesota, one that would have recognized marriage solely as a union between one man and one woman. Voters rejected it, but his convictions were clear. Then, as legislators had prepared to address school bullying based on sexual orientation, Mr. Emmer pushed back. He held that teachers didn’t always intervene because they feared lawsuits. “I don’t think we need more laws,” he’d said. “I think we need more understanding.”

We wouldn’t get to help Tom Emmer understand the impact of ALS, at least not in person. Out in a humid hallway, we met instead with a blonde, crew-cut young man, who listened stoically as we described our condition and how our legislative “asks” mattered. Scott stayed practical, demonstrating some key features on his wheelchair, and noting that many insurance plans, including Medicare, didn’t cover the costs. Would Rep. Emmer be willing to work to change that? Then, I made an emotional appeal. I spoke of how our family had struggled through the recession, how Danielle and I had been self-employed by necessity, and of how my real nightmare had arrived as we’d started to thrive again. I leaned in closer to the crew-cut and lowered my voice. I described how physical debilitation had cut me off from carpentry and from my income stream, and how emasculating that had been. Given the iron prognosis, could Rep. Emmer speed the delivery of social security disability income to those newly sidelined with ALS? “Thank you for sharing your story,” said the young man. He was inscrutable.

It was time to leave the ageing maze of House offices. Now, we sought the Senate’s corridors. Rep. Emmer’s most junior aide, an intern right out of college, volunteered to escort us. We moved through a subterranean world, past checkpoints and metal detectors, brushing by well-dressed men and women in a hurry. We came to the platform for a light subway train. In the bumping confusion of wheelchairs and scooters, couples became separated. It would be me, Shaun, and the intern in a tiny train car. Shaun wedged himself against a window, unable to conceal his discomfort with the breezy young man. I sat across from them in my scooter. The kid was oblivious to the tension. Hell, he was tickled to be in the thick of the nation’s capital, working for his favorite congressman. It was unbelievable, really. We talked about his high school wrestling experience and his college friends. I couldn’t detect anything dark in him, and I turned my charm wide open, hoping to leave him with a glow to take back to his boss. But Shaun was all, “Ew!!  Ew!!  Ew!!” , his face stretched between loathing and pride. Here was this eager kid, serving a man who said that Shaun’s love for Scott was lesser stuff. I worked to keep the young fellow engaged, but I caught the grimaces, the oh-please grins, the you’re-full-of-it eyes, and the ridges of Shaun’s forehead. I thought I smelled latex, and then synthetic polymers, as his features grew ever more expressive.

We got out of there just in time, thanking the intern and waving goodbye with smiles all around. Just ahead of us, gleaming elevators would lift us into the Russell Senate Offices. I sensed that Scott was tiring, from the way that he heaved and from his pale and somber face. Shaun was having none of it. He strapped on that bi-pap mask double quick, and bent over his husband to tell him how it was going to be. This was serious stuff.

We got to meet with both of Minnesota’s senators, Amy Klobuchar and Al Franken. I was pretty awed when they entered the conference rooms. My voice was slurred with emotion and fatigue, but I told them how I had been in a cutting-edge clinical trial, and how I would love the chance to do more, as a test pilot if nothing else. Couldn’t they pump up funding and ease some of the onerous FDA safeguards, even a little bit? Other advocates reminded them of the Dormant Therapies Act, a stalled effort to allow patented but mothballed potential treatments to be taken up and explored by others. Then, Scott talked about his deep desire for action on behalf of those not yet diagnosed. He said that he knew it was too late for him, and alluded to his losses and his sorrow at leaving his best friend. He was matter-of-fact, just like in the support groups. Behind him, Shaun struggled to keep his composure. The senators were moved, especially Sen. Franken. After our talk and some group photos, he and Scott shared a private word, and Scott was beaming.

Back at our hotel, there was a celebratory air. People in wheelchairs were everywhere: in the lobby, on the sidewalks, going out to dinner or drinks. Danielle and I met up with two of my sister’s friends, Libby and Jenni, who happened to be trained in neuroscience and who worked for, or alongside, the federal government. They knew how research funds were allocated, and about certain politicians’ attitudes toward science in general.

I let all of that go, as Danielle and I met Shaun in the hotel bar. With him were Renee and Abby, from Fargo, ND. Renee was close to our own age, and her daughter, herself just entering adulthood, was caring for her mom as she dealt with ALS. Shaun had put an exhausted Scott to bed and now, free of his caregiver responsibility, he seemed younger and far less reserved. He was loose, even silly. He didn’t hesitate to give me shit if I started to do something unwise, given my condition, but also if I complained about my limits. “Oh, you’ll live,” he assured me. Someone hatched the idea of Pocket Shaun. It would be an app for smart phones, to scold or motivate impaired individuals. There would be maybe a dozen stock phrases, voiced by Shaun at peak sassiness, from which a user could choose. Shaun loved it. “Oh my God, like this total queen standing over you!” We got increasingly goofy as the drinks flowed. One of us even ended up on the floor, and the real-life Shaun was there to make a scene.

That trip to DC was a blast, and what’s more, our voices were heard! In late 2016, congress passed the 21st Century Cures Act. Every member of Minnesota’s delegation supported it, and the President signed it into law. Also, as I write this, a bipartisan bill has been introduced in the Senate that would enable PALS to get disability benefits as soon as they have to stop working. 

Admittedly, I follow the news out of Washington more closely than most. Since I was a boy, I’ve loved American history and politics and current events. I geek out. If it’s possible, our advocacy increased my obsession. The 2016 presidential campaign was a rich intellectual feast for me. But many people felt shaken and dismayed when the votes were counted. Scott, Shaun, Danielle, and I were among them.

I’m going to speak for myself now, but I think we’d all sensed a vindictive spirit in the land. It’s something timeless, and doesn’t belong to one political party. I believe it’s born out of frustration and slighted pride, but as this election grew super-heated, it all coalesced and spun around an eye that beheld itself. This cyclonic image of strength would stir millions. Few things are more thrilling to anticipate and witness than a storm, and as a carpenter, I enjoyed smashing things; gutting them to the studs. But, then what? Rebuilding, adapting, and nurturing take a far more steady and sophisticated power. They demand a deeper commitment. We can’t simply vent. In the support groups and in the capital, Scott and Shaun were the ones telling it like it is. They were the ones showing true strength, pointing out that we’re all weak at some time and in some way. That it’s okay to accept help. That there’s an honor and a wholeness in providing it—even, and maybe especially—to perfect strangers.

Scott’s health was stable for a long time, and we got lulled into thinking he had something figured out, or some agreement with disease. We went over to their place a few times and met Remy, their beloved little dog, and we watched movies and drank cosmopolitans. They missed several support-group meetings and we worried. Apparently, Scott was having some breathing issues related to mucus. We saw them at ALSA’s fundraising gala. Scott had his mask on much of the time, his voice tiny behind it. Renee and Abby were there, too, and we all got our picture taken together. I had no way of knowing that I wouldn’t see Scott fully conscious again.

All PALS have a big decision to make: whether or not to get a tracheaotomy, and to go on a ventilator when the diaphragm loses all strength. Vented, your life can go on indefinitely. But, someone must be with you at all times, and that can get expensive and annoying. You’re also hooked to a machine every second of the day. By that point, many people are tired of it all. They may be depressed or fed-up with all of the little humiliations. Life might not seem compelling anymore. In that case, the person chooses euthanasia. It’s quite peaceful.

Scott knew that he had to decide. It was getting to that point, and it sucked. Events would force things. He spent time in a hospital, but pulled through. Then, Shaun called an ambulance one night as Scott struggled mightily to breathe. He suffered two heart attacks during the trip. In the ER, he got a trach and went on a ventilator. He seemed to be doing well. But a day later, something was wrong. Somehow, there was bleeding inside of his brain, and the damage was swift and irreversible.

Shaun put the word out on social media. On a January day both overcast and frigid, with an air temperature of zero degrees, Danielle and I drove to the hospital. I piloted my scooter into the intensive care unit, right up to Scott’s bedside. He seemed to be sleeping easily, but we knew that he was gone. Shaun joined us. I told him, my voice delaminating, “Scott’s my best ALS buddy.” He looked me in the face. “I’m so sorry, Jason. I tried to keep him alive!”

I know you did, Shaun. I know.

To Taste

At bedtime, and with his eyebrows lifting his smile, Hollis comes to where I’m stuck in my armchair. We can’t commune as we once did, through garden harvests and sledding and playing catch together. It’s wrenching, but it needn’t be ruinous. Narrow forms can supercharge artists, and Hollis is keen to question me. So, supposing I might escape into another’s shoes, he dares me to claim the name and to show him how I got there. Then he turns playfully macabre. If I become a living corpse, will I hang loose and let myself go skeletal? Or will I schlep my dead flesh, fighting to preserve it, until the effort is unseemly? Picking up a football game from the background, we both note the exuberance and the injuries and the coaches’ boiling blood. Hard counts and play-action faking leave us cold. During our final minutes together, we analyze the dogs in our lives, the seasons, and comic book villains. I know that he reflects on all of it. Back in his bedroom, I hear him finger the electric piano, examining the intervals and delighting in extremes.

There’s much to discuss at these meetings, but we often come back to confirming our favorite foods. That heats up talk of restaurants. In my life I’ve had the privilege of celebrating with legends of fine dining, and I’ve run across some killer ethnic eats on midtown avenues and gravel roads in Mexico. I savor the memories of Friday night take-out from my adolescence. But, I want to start telling you about the places I came to treasure over a decade or more; places that stayed the same while I aged; places I’ve recently visited or can see returning to soon, despite my ridiculous condition. I’ll serve side dishes of personal history, philosophy, and travelogue that may not leave much room for the restaurant itself, but so be it. Sound good?

Let’s roll north on US-169 in September, as the twin cities tumble into countryside. We cross and re-cross a slow, meandering flow, and the Dakota people called it a river of Spirit before clumsy whites corrupted that to Rum and made their bogus name stay. Up ahead, Mille Lacs is bigger than such insults. The lake entertains the sun and the winds, and for miles we sweep along its shore, mesmerized, before pushing due north through pocked and soggy ground. The town of Aitkin waves us over the Mississippi, looking just like any random waterway. Now the land rises and leaves are sifting through the conifers. Deep green meadows call to deer. Past birch bark and moss-covered rock, the road could take us to the heady edge of the Boundary Waters.

But our turn-off is approaching fast. Back in the early seventies, Quadna Mountain Resort was swinging until the energy crisis starved its party. Suddenly, the miles from Minneapolis were a liability. Gasoline became precious, and who would pay to heat all of those cubic feet through the winter? The place got propped up and finally diced into timeshares, but cash never ran freely enough to keep its big lodge vital. Secretive interests took the ski hill. They built a fenced perimeter befitting a cult, and now, out on the golf course, nine lonely holes watch the sky for a sign. 

The place is still lovely. On a lane lined with maples, Sneetches huffs with recognition and Caleb shouts, “Yay, the Forest House!” He’s six years old. We park by a familiar bank of townhomes, and Mac bursts from a door. “Hi, guys!” He frees Hollis from his car seat, breathing over the intricacies of a five-point harness. I have a question for him. “You do know what I’m ready for, right?” No, bud. “Why, Papa’s spaghetti!” Mac always serves his specialty here, often on the nights that we arrive, and the man guards his traditions more than anyone I’ve known. He’s grinning as we file inside, our backpacks full of jeans and sweatshirts for a couple of days up north.

A fire leaps and pops. Janine sits beneath a pair of old-time snowshoes on the wall. My mother-in-law is out of place here, but she’s game. Danielle’s sister is just in with her own family, and Chole swirls her red wine as she recounts the week’s absurdities. Upstairs, Big Mike gets Jack and Isabel settled. The house will be crowded but warm, and we’re all pleased to be here.

My little gang has returned each fall since we moved to Minnesota, but I first came with Danielle in the days before we had our boys. Mac and Janine have owned a slice of time at Quadna for two decades now. There was once a proper cabin in the family, on a lake thirty minutes from here, but its needs for upkeep were forever pressing. Like boats, cabins demand attention and investment, and those woods and waters have to be deep inside of you.

When I get up the next morning, Chole and Mike have already returned from taking the three older kids to breakfast at the Hill City Cafe, a place that’s known to crusty locals who remind me of my old neighbor, Bruce. Downstairs, most of the adults prepare to do a whole lot of nothing. They’ll unwind as college athletes and bright, turning leaves play behind glass; drink screwdrivers and pry open paperbacks, far from laundry and errands and email. Danielle will feed Hollis and then get down on the floor to play with him. I need to get outside with the other kids. There are things to instill and things to release; we have some breathing to do.

To be continued…

Adjusted

“When I write up the documentation for your claim, I’ll follow the language I’m getting from your doctors here at Mayo, but I’d also like to hear about your situation in your own words.”

The mellow physical therapist made those chairs sound empowering, and we discussed their drive wheels and how to configure them for the lifestyle that I wanted. Beside him, a woman with Reliable Medical Supply grasped every little consideration. She knew how my needs would relate to the controls and the specialized gizmos and even the padding. We were all close in age, but they were likely some decades away from a state remotely like mine. With effort, I mirrored their calm and pragmatic attitude. No one got emotional. They could also better understand me that way, since tension in my throat or face degraded my speech. Even smiles made me slur, and so I couldn’t get too eager delivering my silly quips. I had to think about baseball. The therapist nodded as Danielle or I spoke, and I pondered his olive complexion and local, small-town background.  I flashed on how I’d heard some people in the northland call themselves dark Norwegians. However he’d come by his color, he radiated solar warmth.

“These machines do cost… a great deal of money, as I’m sure you can imagine. It can be tricky to justify specific features as matters of need. I’ll certainly do my best, and you’ll be able to appeal any decision, but there tends to be a ceiling on what we can expect to be covered.”

It seemed that I would beg for something I desperately didn’t want: a fully customized, tricked-out, and motorized wheelchair. Such a thing had never even rolled through my dreams, and it was a bitch to accept my circumstances. But, I understood that we would build a bionic base of operations for what remained of my life. It was a big deal. We would have to find a way to pay for things that insurance wouldn’t. The two professionals seemed keen to apologize for our coming tangle with the industry, but at least we had some coverage. I thought of Hollis, and how his seizures had overwhelmed his brain and then our income when we were already down. We’d been remiss in that instance, gambling that we could slide for a month while paperwork cleared, but then I guess I’d like to think that our lapse had some context. Do you recall a certain American International Group, Inc., or AIG? The insurance, yes, insurance conglomerate tempted the events of late 2008, when it failed to hedge against its own arrogance and set off a panic that upended everything.

Security. Stability. For-surety. I hadn’t put enough ballast in my financial life, but in other realms, I’d let misgivings fix me in place for too long. I’ve read that people most regret the things that they didn’t do, the stuff they’d been too scared or stiff or subjectively busy for. At times, I’ve reassured myself by judging others. I’ve marveled at the grim way that some people play defense! I picture a man, pale inside his stronghold of stone. Through slits meant for arrows, he peers out at the moon. He imagines blessings beyond his walls, and how he might leave to seek after them, but instead he’ll make a stand. Against all that’s uncertain. How will he handle a disease like mine, with its insidious beginnings from within? How can he watch diagnosis dominate his future, leaving him the past to rehash and the now to grasp after? I can say that I’m grateful for the things I’ve chosen or stumbled into that scared and enlarged me. Some of them were arguably irresponsible or came with drift; with surrendering initiative. But, can’t you grow while being a bit reckless? Of course, commitments can be plenty risky and stretch you in unplanned ways. I guess I just figure that you want to meet life with an open heart, rather than calculation. While you can.

Besides a husband, father, and friend– roles which offer their perils and pleasures—my titles have been musician and carpenter. Now, artistic ambitions are often knocked. Question: What do you call a musician without a girlfriend? Answer: Homeless. Ouch!  Or, dig this: How do you get a bass player off of your porch? Answer: Pay him for the pizza. Bam! So simple and instructive. But in lieu of money, musicians chase a blend of craft, fellowship, and transcendence. They may lose and yet find themselves along with an audience, if they can avoid self-conscious yips and comfortable ruts. And yes, they’re often lovable. Carpenters are supposedly “workers” who trade their sweat for some coin. Can’t you do better than that? And isn’t it dangerous and hard on your body? Admittedly, construction is especially vulnerable to an economic downturn. Just ask me. But then, who knew that carpenters solve cerebral puzzles as the sky sweeps over them?  I sure found out. And though I built things for others, I was the toughest one to satisfy. When a complex project turned out well, I unabashedly admired my work. In our society, people’s jobs rarely line both their souls and their pockets. Too often, it’s neither. But ideally, isn’t someone’s work indivisible from his life and character? I’d hate to now realize that, above all, what I’d prized was insulation. That I’d most wanted insurance.

So I wonder, then, what we should make of a semi-decent person who gets fulfillment, money, and bedrock stability within the widely despised health insurance industry. I know I sure twitch at the thought of actuaries, cold and cadaverous, spinning fate in a centrifuge and skimming off profit. Promising to help mend the lives that break in qualified ways. But this person whom I’m imagining—though close to those horrors—sleeps easily. Her employer gives her surety because she’s mastered the process of reviewing medical claims, knows how to lead, and can make a denial stick. I tried to inhabit her on the ride home from Rochester. What could a person like that feel for my disease and how it whittled me? Danielle and I moved through the majestic autumn landscape, with its fields full of corn like shredded parchment paper. The sky rang with blue and gold. Bales of hay lay scattered on the pastures. But what I saw, ghosting over all of it, was that claims manager. She was mid-thirties and wore a blouse with a keyhole neckline. She had a chestnut bob and eyes like the lake beyond her Chicago office.

Andrea was proud of her team. Whenever she felt worn down and her world bled out its color, she flipped through vibrant mental slides of her people. Her talent. She’d recruited many of the adjusters herself. They liked to outdo one another, and she encouraged this because she was admittedly asking them—and herself being asked—to do a lot. Their play was competitive, too. She liked to laugh and flirt and loosen with them after hours, but there was a line, and back at the office they knew her deep marine eye contact in the morning meetings. There was so much coming down on all of them, so many claims to settle and filter. To adjust. She’d intonate a sober note of disappointment if it was warranted, but then move on. The approach worked. Claims were processed more quickly and neatly under her leadership than they had been with Megan’s, who’d been way too passive. Andrea actually loved the insurance business! She knew exactly how it’s games were played and that was fortunate, because she wanted so much out of work and life. At times she wondered if it shone on her skin, like when she ran through the wind off of Lake Michigan. Some flush must’ve been contagious within her team, a sense of being alive in this supposedly dry industry. It was their secret, and they ran together.

She needed to be first to arrive at their office and among the last to leave. It probably wasn’t sustainable, but she didn’t plan to be in this particular position forever. She was laying down a marker, like she’d heard a politician talk about on Fox. She’d noticed that the sun itself topped the skyline with less urgency as the season deepened, but this was not the time for Andrea to ease up. Maybe someday. Now, swiveling to meet the face of her favorite adjuster, the buoyant Jonah, she saw that his smile was too tight.

“What’s up?” She declared this more than asked it, seeing that he was rattled. He inhaled. “So, I’ve got a problem with a file that I capped out last week. The claimant wanted a powered wheelchair with every single bell and whistle known to man, and I couldn’t find any sort of precedent to grant that level of, you know, bling. Right? So, I sent back a limited acceptance letter. And somehow, the claimant himself—not even a doctor, though that would be plenty weird—he got my effing cell number and he’s been blowing me up all weekend, leaving messages that are super polite and sincere, but he’s damn sad and it’s messing with me.”

“Shut up! Seriously? So, that’s clearly a first!” She clapped her palm to her forehead.” I’m so sorry he harassed you! We’re going to document this, okay? Whatever we can do to help you and to protect the team in the future. Shit! That is so unsettling, the direct contact. Of course your cell number isn’t listed on anything we send out. He should’ve called our front number and been transferred to arbitration. The guy must’ve done some real digging to get your cell! You have to be weirded out. What even makes the claimant and his people think that he needs such a high-end chair, anyway?”

“He’s got this intense degeneration in his nerves, the ones that move the muscles. It’s a something lateral sclerosis. I guess it’s brutal. I do really feel for him, you know, but like I said, there’s just no precedent. What do you think I should do?”

“I’ll call his PT after our team meeting, Jonah. I’m glad that you brought me into this. Besides, I really need you to be yourself today!” She touched his shoulder and squeezed for a moment. “Let me talk to them here really soon, all right? I’ll be gentle, don’t worry.”

Gentle, she thought, because Jonah seemed unnerved. By sadness? The guy’s laugh always made her Mondays. His gaze had also failed to map her body’s contours, something he usually pulled off with discretion but a flattering sense of appetite. Her phone buzzed in her pocket. A text from a number she didn’t know. “Do you feel me?” Weird.

She shut the door to her office. Out in the cubes, the crew was getting rolling. It was like triage layered over edgy banter, a sexy hospital drama for a nerd such as her. But she needed to think.

Instead, her smart phone began to vibrate with alarming urgency, like in a severe weather alert. The screen was black and flashed red lettering. Loading Advanced Empathy App….Please Allow [ ] or Deny [ ]. She made a sharp noise of surprise and pecked the “Deny” box, but the phone swelled into its ring tone, a loop of house music that normally steadied her, but now felt artificially intelligent. The incoming number was a string of ones. She had a wild impulse to hurl the phone to the floor and smash it with the heels of her pumps, but she fought it back. Instead she answered, “This is Andrea.”

Back when she was maybe seven years old, she’d been with her grandparents at their lake cabin, on the communal dock with its weathered wood and styrofoam. Her grandma was going to hose her off; get the sand that would chafe everything if you let it. But, when the water hit her skin, smelling like sun-warmed vinyl, it felt so incredibly wrong! Her body tried to fold in on itself, shoulders and hips and knees drawing together against her will. She felt powerless. Clenched. She must have screeched, something made her grandma swing the hose off of her, saying, “What in the devil, child?” Her grandpa came clomping down the dock as she yelled that the water hurt her. He was a perceptive man, and finally he whistled sharply. There had been something about an outlet or a wire, something slipshod that sent electricity into the water.

Thirty-odd years later, Andrea drove her phone hard against her own head as she again felt that powerful, involuntary tightening in her right arm and down through her chest, and it was hard to take much more than shallow breaths. Her sense of her surroundings grew unstable and then it all dissolved. She saw entirely new and unfamiliar things; heard and felt them, too, but with the creepy certainty that she wasn’t in her own skin. There was some sort of a lab, where a bearded man ran needles into someone’s muscles—it sure felt like her own—with a thin wire feeding from each needle. He asked her to flex, repeatedly, as he studied a screen and listened to the grainy sounds on a speaker. Then, wearing a suit in a small office, the same man pushed and pulled on her arms and legs and head at different angles, frowning as he urged her to resist him. He had her touch her own nose and make rubbery faces. He scratched the sole of her foot as if to draw something from her, while she stared at the windowless walls thick with diplomas and awards. Then, after hunching over a computer in silence, he turned and spoke earnest words to her.

“It’s quite serious. You shouldn’t be getting weak and stiff like this. I’m going to order a large panel of blood work, an MRI, and a lumbar puncture, or what’s commonly called a spinal tap. Right now we have a fairly long list of things that we’re looking at. You should know that cancer is on that list. Autoimmune disease is on that list. ALS…is on that list.”

Then Andrea was on her side upon a soft table, a white sheet crinkled beneath her. Her face was toward the nearby wall, her body in a loose fetal position, and her pants and underwear tugged down so that she felt the air on her butt crack. A woman stood behind and over her. “I’m just going to mark the spot where I’ll go in,” she was saying. “Right between the L4 and L5 vertebrae.” Something pointy wiggled against her spine. “Did the doctors say what it is they’re looking for? You’re just so young.”

Now Andrea was again within her own body and her private office with the door closed, with a sleek phone jammed against her ear and no one hearing her moan, no grandpa running to see why. Her ear throbbed and now that doctor was in there with his prickly beard. “The last few tests all came back negative.” He paused. “I’m afraid that we’re left with ALS. I’m sorry.” Then she heard a pop from within the phone itself, something wound so tight that it broke. And she could move again. It seemed to be over.

Andrea collapsed at her desk and watched the distant glint on the lake. What? This was not at all okay! Was this schizophrenia, or one of those other really unthinkable conditions that she’d learned about in college psychology class? She hit some online searches, and as she typed, her right index finger and parts of her hand and forearm seized in a cramp. Pain and a feeling of frustration, but then the muscles released. Whoa. Her searches just made her feel more anxious, and she decided to try and put the whole episode aside for the moment. Get some familiar control going again. Thankfully, the details from the experience were fading fast, but there was a strong afterimage of a doctor, or perhaps her grandpa. Something had been wrong and she’d felt extremely frightened. And sad.

Like Jonah. She pulled up his recent files and found the one that he’d spoken of. Could her bizarre adventure be related somehow? This couldn’t wait any longer. She needed to get any and all weird, remotely threatening bullshit off of her plate right now. The claim was out of Rochester, Minnesota. The Mayo Clinic. They were usually consummate pros over there. She found the PT’s number and dialed from her land line.

Her title did not impress the man who answered. Nor did her voice, it would seem. That was probably because her rapid, precise diction and tonal shading were most effective when they accompanied her eyes. But, she had to admit that her tongue felt a bit thick just now. Like she was on her third margarita at El Tejaban! Her words always just burbled out, but now they took concentration. What was going on with her? The guy on the phone was certainly nice enough, much more than that, actually. He was just irritatingly patient with her. As if she needed to learn something. He sounded like he might be smiling. She made her case on the disconnect between the claimant’s current condition and his request.

“But it’s all medically necessary, Andrea. This is a progressive disease. It only gets worse! There aren’t even meaningful treatments, let alone a cure. Mr. Carr has been falling with a cane and a walker, and so I’m sure you’d agree that he needs to be in a chair. But, I don’t think you understand that we’re still early in the course of things for him. He’ll be using the chair for a while, so it needs to be able to adapt and expand to meet his specific and increasing needs over time. Those needs are truly alien to most of us. But it’s the situation that he’s in.”

She brought up the way that Jonah had looked that morning. Shaken. Why was this Mr. Carr calling her adjuster directly? That wasn’t defensible, was it? How would he have gotten the number, anyway?

The physical therapist laughed like it hurt his ribs to do so. “I certainly didn’t put him up to it, but I will tell him that those actions are hurting his cause. He seems like a good man, but I can imagine that he’s a bit desperate. He was in his prime. I’d really appreciate your personal accommodation in his case.”

Andrea had to admit that Mr. Carr probably deserved a great deal of sympathy. But did he deserve an eighty-thousand dollar payout by her employer, for what were arguably quality-of-life rather than medical issues, when maybe half of that amount would do? She needed a strong close to this year, because corporate was watching her numbers closely. Things were so unsteady with all of the new, sick people getting insurance and the healthy ones dodging premiums. She didn’t think for one second that it would bankrupt the company, though. The amount of money sluicing through the place was ungodly! There were people above her—and, of course, there were the shareholders—who could certainly handle smaller bonuses and dividends. But, they wouldn’t get to blame her if that had to happen. No way. She was a climber.

“I believe that we sent Mr. Carr a generous but limited acceptance letter,” she replied. “We want to help, but we have norms that we follow. Proven standards. I suggest that he contact an arbitrator if he’s not satisfied. You’ve certainly made a good case, and perhaps a third party will side with him. I do wish him luck.”

There was a long pause. “I see. Well, I’m so glad that I was able to address your concerns.” Just as that ripened to the point where she smelled it, he hung up.

As Andrea stood, it seemed like the casters of her Aeron chair were lubed with fresh silicone spray. Her trunk lurched diagonally beyond her center of gravity and…she just couldn’t recover! She went down on the industrial carpet with a squawk. Someone was knocking on her door, and then they opened it. “Andrea?”

It was Chris. Why did it have to be Chris? He was as hunky as they came, and he played little games where he teased his full respect for her, or maybe that was the wrong way to put it. He had a hell of an edge, and this was a very awkward way to meet him on a horseshit morning. How was that?

His hair and his cultivated stubble hovered over the situation. His mouth fought to stay neutral as she struggled to her feet. “Ka-rith!” she exclaimed. Wait. It was supposed to be, “Chris.” Nice and crisp, right? Now, his eyes were the dynamic ones as they tracked her at double frame-rate, darting and flicking over her.

“Too many mimosas this morning? Why didn’t you share?”

“I doan know whas going on with me too day. I doan feel right. What can I do for you, Chris?” Her speech was deteriorating. Was she having a stroke? This was getting scary, but she was tough and no one would see her be vulnerable. Hell, no! Chris kept on appraising her, clearly amused but curious.

“Well, it’s Jonah. He was like a zombie and then he just walked out. Nobody knows where he went or what’s up with him. Did you talk to him?”

“Yes, but weer not fin nished. Can you keep evey one cool while I track him down?

“You know it. But what about…”

She was moving past him. Her butt and calves and thighs felt wooden. She had to nearly force each step; really focus on mechanics. As she reached for the knob on the outer office door, her shoulder cramped and she had to put her left hand over the one already on the knob, just to turn the damn thing. What was this?

She rode the elevator to the tower’s ground floor, heading for the Starbucks coffee shop. She often brought individual team members there for performance reviews or on occasions when she thought a neutral setting was called for. Jonah loved his coffee, so there was a chance that she might find him there, collecting himself.

She scanned the room but came up empty. Damn! She didn’t recognize the barista, a tall, middle-aged woman who seemed nervous. She was probably new. Andrea approached her with stiff strides and leaned against the counter.

“Hi! Have you theen a lung guy, in a salmon colert thirt? He might eff come through here in the las hour?”

Her voice was both nasal and hoarse. She was honking, and to her own ears she sounded quite drunk. But the barista had a different take. She put her hands in the middle of the counter and leaned across with a straight back and her neck fully extended, close enough for Andrea to notice her imperfect teeth and coffee breath.

“I AM SORRY, BUT I HAVE NOT SEEN ANYONE LIKE THAT THIS MORNING.” She shouted it with robotic affect, boring into Andrea to make her understand. Because she thought she was deaf, maybe. Or slow.

Exasperated, and with effort, Andrea ordered an iced coffee. But as she took a seat and her first sip, something went wrong at the point where her throat branched into separate pipes for stomach and lungs. She sprayed coffee across the table! Luckily, no one was nearby, although several heads turned. She took a few more sips, holding the liquid in her mouth and then breaking the swallowing into discreet and manageable steps.

She brought out her cell, intending to try Jonah. But the phone was fried or something. When she tried to use it, the damn thing vibrated angrily and red lettering spelled out: Advanced Empathy App in Progress!! Time Remaining: 2hrs 18min 37sec. Please Standby. 

She just wanted to get the fuck out of there. She rode the elevator three stories below street level. As she walked up the incline of the parking deck toward her Audi, her lower body might have been fighting against a waist-deep current, with flippers on her feet! She heard herself grunting and cursing. Beside her vehicle, she struggled to fish her keys out of her purse. Everything was so hard and awkward. After sliding onto the driver’s seat, she pulled her legs inside with her hands as if they were prostheses. Turning the ignition required everything she had. As she put her right hand on the gearshift, Andrea noticed that the musculature between her thumb and forefinger had melted away, leaving an apostrophe of bone and a hollow socket. She began to feel a pulse of true horror and disbelief. What was this, what did Jonah know? And that PT in Rochester and his client, what about them? What about whatever was happening with her cell phone? And that whole hallucination thing? She felt poisoned or cursed. Attacked. This was evil! She was determined not to give in to panic, though.

Driving up out of the parking deck into daylight was exhausting. Negotiating the tight turns required her to keep lifting her arms to reposition them on the wheel, and they were leaden. It felt like she’d lost her power steering, as well. When she went to pull her card out of the scanner at the gate, she found that she needed both hands to grasp it. She just didn’t have any pinch strength!

She made it back to her condo without incident, and there must’ve been luck involved. As she parked, she wondered if she should have driven to the hospital, instead. No, no, she was probably just stressed or overtired; having some sort of a breakdown, right? Because she was crazy healthy. She ate organic everything, and drank measured red wine and practiced yoga and jogged. Weird wasting diseases happened to people who ate bush meat and brains in New Guinea. Right? Her mind was just messing with her and she needed rest; maybe some meditation.

She had to climb three steps in front of the building, and they were hell. She used the railing to pull herself up, groaning with exertion. While she was doing this, a pert blonde whom she’d seen around bounded past, her bottom half dipped in lululemon. That bitch! All nonchalant with her heart-shaped ass that functioned so well.

Andrea nearly fell as she entered her unit. It was like stepping on ball bearings. She moved carefully along the hallway, sliding her hands along the walls. Once in the bathroom, she removed her clothes with maddening effort. The mirror showed her something monstrous. All over her body, muscles were twitching and jerking and pulsing and writhing. Her upper arms had withered so that they were spare as ax handles. Her shoulders were bony prominences. Most awful of all, her belly pooched out! It wasn’t fat, exactly, but more like her innards were pressing on abs that had no tone. None. She couldn’t suck it in!

She would shower; take a nice, long hot one and nap beneath a fan. Get some freaking rest and then…see what was what. There had to be an explanation for this. Right? There had to be. She bent carefully and turned the lever on the shower valve. The water warmed and she tried to empty her mind; prepare for the suddenly intimidating process of entering the tub. One leg slowly came up and over, her toes dragging on the cast iron lip. Made it. She walked her fingers up the tile above her head like a spider, forcing her hand ever higher until it could grasp the pipe behind the shower head. Now, she ever so carefully brought her second leg into the basin, shuffling and sliding her feet into a stable position. With her one hand still gripping the shower head, she reached behind her and pulled the white curtain closed. She let the water do its work.

Only one arm now had the strength to bring shampoo to the top of her head and massage it through her hair.  The other arm palmed the tile in front of her, keeping her from falling forward. Then she made the mistake. After she’d rinsed the backside of her head as it hung down, she simultaneously tilted her face back, used her stronger arm and it’s fingers to comb her hair away from her forehead, and took her weaker hand from the tile to clear her closed eyes of any remaining shampoo. Then she was suddenly past a point of no return. She was falling backward. Shit! She couldn’t recover; couldn’t take a step back to stabilize. It seemed like she fell forever. After her head struck the tile at the back of the stall, it slid down and banged against cast iron, finally coming to rest on the slope of the tub, her chin tucked to her breastbone. Hot water hammered her face.

She couldn’t sit up. Not even one inch! Nor could she rotate her torso. The water kept coming, and it got into her mouth and down her throat and found the wrong pipe again. She coughed weakly. Those muscles were failing, too. Jesus, it was even hard to breathe! It felt like bricks were on her chest and she had a flash from that play, “The Crucible”. A man asking for more weight.

Andrea realized that she would die there. She couldn’t even raise her hands to cover her face, and the water and the weight would be too much. She was not at peace, realizing that she had gotten so many things wrong. She had no husband or boyfriend or partner of any sort. No pets. Her parents and her brother were thousands of miles away, and she knew they wouldn’t hear her scream now inside of their minds. They’d stopped listening for her a while ago, even for her laughter. Because she’d grown too insulated; too smug inside her titles and her steady rise toward the top of…what? An insurance company? The kids on her team cared mostly for themselves, anyway. They’d had some fun together, but who would even remember? All of those claims, they had been real people with pain that she’d instead spun into numbers.

She felt the thump of her front door closing. Then, over the spray of the shower, a strange pair of sounds closed in. First, a combination of tap with thunk, and then a drag. On the wooden floor. “Thap!…drag…Thap!…drag”. Ever nearer. Then a man was singing an old song by Peter Frampton. “Doooo you, YOU! Feeeel like I do? Lemme hear ya. Doooo you, YOU!” he demanded, now right outside the bathroom door, “Feeeel like I….oooh. Everything okay in there?” She could only moan.

Through the translucent shower curtain, a shadow lurched toward her feet. “Thap!…drag”. A hand peeled back a bit of the curtain, reached for the shower valve, and turned off the water. “My goodness, let’s get you a little more comfortable! Don’t worry now, this will all be over soon.” The shadow lunged toward the end of the tub where her head was throbbing. “Thap!…drag”. The hand again peeled back a small portion of the curtain.

A man stood over her. He was Andrea’s age, tall and stooped in an odd way, and he held onto a cane. His face was unexpectedly kind, and a little sad. He was trembling; twitching.

“So, I’ll bet you can guess who I am. I’ve been in touch with Jonah, who has great things to say about you. My physical therapist, not so much. He advised against this but…you know, several people in my life had suggested that I’d make a good teacher. It’s too late for that now, at least formally or professionally but, in you I saw an opportunity for, what do you types call it? Continuing education. I get the feeling that you’ve learned a lot today.”

He turned and looked at her phone on top of the sink. “Anyhoo, I’d better be off and you’re going to need a nap. When you come to, I think you’ll be wide awake, more awake than you’ve ever been in your life. This one goes to eleven!” He laughed but then seemed embarrassed. “I apologize, that’s from a dumb movie called “Spinal Tap”. Hey,  but you know something about those now! All right, well, I’m sorry this had to be so awkward and creepy and weird, but I figure I might as well die trying. Do you feel me?” She nodded weakly, and blacked out.

Andrea awoke in darkness. Before she realized what she’d done, she’d sat up and climbed from the tub and snapped the light on. The mirror showed a toned and supple body. She was back! She wrapped herself in a robe and sat at her dining room table, opening a laptop. She would write two letters. One would be the full acceptance of an individual medical claim. The other would offer her employer her resignation. She was in her prime, after all, and didn’t need to hedge against her own life.

 

 

301 Monroe

It became real when I drove my scooter into the office of the title company. Through a glass partition, we saw the buyers and their agent, looking juiced. There were specialists to make it all legit and we were maybe seven minutes late, due to screwing around with the scooter.

Danielle and Caleb and I moved to Minnesota in April of 2005, when Caleb was fifteen months old. Atlanta’s maddening traffic, the job constraints of Athens, and lower southern culture had us longing for a new start. During an October trip through Colorado, to see a bit of the west and to scout the communities outside of Denver, we’d received a phone call. Danielle’s sister was getting divorced!  After the birth of a second child, her marriage had suffered catastrophic engine failure and so we saw what we would do: move to the upper midwest to help our family and to shake our lives awake, back in Danielle’s home state. I was all in.

Our real estate agent in Minneapolis was a man of chuckling certainty. While he had a bent for healthy square footage and sound mechanicals in the places that he showed us, many of those homes were uninspiring. Danielle and I had met in the hand-rubbed lustre of Savannah. We liked things and places that were a little bit funky; that had a vibe or a patina to them. We wanted to feel the love in any potential home, but we also wanted to feel safe in the neighborhood and to avoid buying beyond our means. Thus, we burned through the gas as we drove through winter streets in our realtor’s SUV, looking at houses that didn’t satisfy. We had only a few days left to search before we were due to fly back to Georgia.

An assistant agent picked up on our style. He mixed some quirkier and overlooked properties into the tour routes, and one afternoon we stopped outside a house on Monroe Avenue in Edina, a Minneapolis suburb known for its self-regard and affluence. Mature oaks and maples spread overhead. The listing information told us that the place was built in 1910. That made it around fifty years older than the surrounding homes, and it looked like it in a good way. It had a steep gable roof and a bay window, and tight bands of wood lapped up its walls. The eaves cantilevered two feet beyond, their undersides following the roofline. Symmetrical dormers on either side of the ridge added heft, and the hip roof over the finished front porch beckoned us to enter.

We were goners once we saw the staircase within. Deeply colored douglas fir matched the substantial baseboards and the door and window casing, and the railing’s clean details evoked an era and aesthetic that resonated in both of us. Nine foot ceilings gave intoxicating headroom. The kitchen was huge–though it was wall-papered with roosters–and there was a tidy basement. The house…had brown shag carpeting throughout most of the main level. Um, say what now? Oh, peel back a corner and…there were maple floors underneath. Looked pretty good but they might need patching and definitely refinishing. From the low deck in back, we watched the property edge into a sweet park with a playground and ball field and a great hill for sledding, a communal back yard. Three bedrooms huddled upstairs, hoping to distract us from the bathroom situation. There, waxy hardboard surrounded a tub that was so close to the toilet facing it, you’d have to spread your legs to sit down on the pot! The house had no fireplace. And some of the plaster walls were cracked or skinned over with hideous paneling. Oh, and the single-car garage was technically standing, but beyond repair. It needed full replacement.

Many buyers would have blanched at the amount of renovation required to make this place sing, or hell, just to get it to the point where we could host folks without apology. But it had good bones, as they say. More than that, it had heart. You knew that generations of kids had grown up under its roof; that its families had listened to FDR and for news from the front; that they’d watched suburbs slice up the apple orchard around them. The love was still there and we would amplify it with our efforts. I was a pro carpenter, after all, and Danielle liked the smell of sawdust and the feel of a pry bar in her hand. We could do this! But in hindsight, we made the mistake of sampling the recent years of our lives and extrapolating those capacities.

You see, at that moment we were putting a bow on our Georgia home. We’d created equity by improving and updating; spending our own time and some spare cash.  In the two year run-up to Caleb’s birth, we’d replaced windows and a front door, built a small deck, installed laminate flooring, constructed a fireplace mantle, put new tile in the master bath, stained all of the cedar siding, and turned a knee wall along the interior stairs into a classy railing. Most of all, we’d done yard work. Insane amounts of it. 

Our property was heavily wooded, and the shade and privacy that the trees provided had helped to sell us on the place. We’d cleared a lot of underbrush, including some poison ivy that blistered Danielle so badly she developed a staph infection and had to treat it with steroids. The efforts showed, though, and it was satisfying to groom our surroundings. But some of our large and plentiful pines–the southern type that are pure trunk for fifty feet before they pop into a rounded crown–were looking sick. First just one or two, but then more of them showed thinning needles, an orange powder at their bases, and white gobs on their bark. To our horror, we learned that beetles were inside of the pines. They would girdle our trees and spread inexorable death through the whole lot. We were hosed!

A neighbor shared our problem, and he’d hit upon a radical solution: rather than wait for the trees to sicken one by one and have them extracted at great cost–or else face a potential liability when it was time to sell the house–he would invite loggers onto his property. They would take the trunks at no charge, leaving the crowns for him to process. They’d assured him that they could spare the tree species not doomed by the beetles. It was a bold, manly move and I wanted in.

On the big day, a crew arrived with heavy equipment. The Hydro-Axe was a four-wheeled beast that seized a pine like a person would grasp a flag staff, while fearsome shears cut the trunk above its base. The machine rumbled forward, holding the entire severed tree erect and quivering, before tipping it into a zone of snarling saws.

The mess they left suggested the wrath of an EF-3 tornado, but I was resolute. For well over a year, after wrapping up a long day of hanging doors or running crown molding, I oiled my chainsaw and attacked the chaotic piles of branches, slowly slicing and piling and hauling away. It was therapeutic, really. I didn’t mind. I liked the mingled smells of sweat and gasoline and pine sap. On the weekends, Danielle and I tackled the house renovations together. Even once Caleb was born, I was able to complete projects while he bounced in his jumper or napped or ate. It was all so doable! And it paid off, netting us good money for our efforts when we sold.

So, now you’re inside our mindset when we bought another fixer-upper. We weren’t thinking that two kids might make more than twice the impact of one; that we’d both need and want to spend most of our free time talking and playing and being with them rather than patching plaster; that our bodies would begin to balk at endless labor. We didn’t know that a looming recession would gut the industries in which we worked, leaving us fighting to simply keep the house, let alone restore its glory. We were unaware or heedless of so many things, but we knew that we were capable and we trusted in our love for each other.

Our neighbors to the north were Tim and Debbie. Tim had grown up in their house. Norm and Joan lived to our south. They’d been there for forty-seven years! Norm stopped raking or mowing his lawn whenever he saw me on the other side of the split rail fence, and he would reminisce or ask after Caleb or razz me about my own lawn, smiling and laughing beneath a handlebar mustache. Joan delivered a warm, homemade apple pie when we moved in. To their south lived Bruce and Marilys, and the four of them were longtime friends. Marilys had operated a beauty salon in her basement, and she now ran a home daycare that our boys would attend. While Marilys bustled with the kids, Bruce groused on the sidelines. Perpetually agitated by everything from the evening news on down to the price of beef, he seemed–as when he called tv shows “programs”–like a throwback; a character from the Nixon era, perhaps. He was a retired shoe salesman, and on guard against specious reasoning and hype at all times. He squinted at anything edgy or spicy. “I hate Mexican food!” But I loved the guy; he was good stuff. And I know that he loved our family, as well. His act protected a tender heart. When he came to our door in May of ’15, curious and likely concerned because he’d seen my truck sitting idle for weeks, he was full of his usual sarcastic needling. But when I mentioned the name, “Lou Gehrig”, he stopped short and I saw his eyes brim as he turned away, stammering.

The first three years were mostly great. Caleb was healthy and happy, and I remember swinging him in dizzy circles and throwing him into the air as he squealed and the grass stretched all around us. His bedroom was across the hall from ours, and at night we tucked him in beneath a window where–according to neighbor Norm–an autistic boy had seen lightning strike his tree. Danielle and I got close to our niece and nephew as their mother rebuilt her social life. We made steady improvements to the house, removing an awkward closet and refinishing the surface of the hardwood floor. Warm as melted butter, it enriched the caramelized millwork along with walls the color of yolks. We stripped the roosters out of the kitchen, and after peeling the fibrous tiles and stark brown paneling from the dining room ceiling and walls, we replaced their busted plaster with new drywall. This was all disruptive, though, and it was a little tougher than it used to be to laugh at the always unfinished feel of our surroundings. We had decided to give Caleb a sibling, as work was plentiful and parenting suited us, and our love wanted a bigger mark on the world.

But things turned dark, both out there and at home. Our neighbor, Tim, got throat cancer and it took him out fast. They moved not long after his diagnosis. We went to his benefit dinner and said goodbye, though I couldn’t admit that’s what it was at the time. Adam and Bella moved into the house, a young couple with a baby. On NPR, I began to hear alarm over rotten bank holdings and the financial instruments that they underpinned. Within the panic rooms on Wall Street, operators tried to contain what they’d tinkered into existence: an impersonal and bottomless debt. Confidence crumpled in on itself. It sucked in a wind that would destabilize life around the globe, and a couple of weeks after the ’08 election and only days before Danielle’s due date, I learned that my job was something my employer needed to shed.

I was a mote within the storm. Relatively new to the area and without many contacts, I knocked about as wallets closed, people puckered, and businesses hunkered down. We brought Hollis into our home and I tried to focus on holding him and looking into the depths of his eyes while winter descended, but in the small hours, rocking him against my chest as frost veined the window panes, I felt afraid. I was lost. “Shut up!” I told my son more than once when his nocturnal crying unnerved me. Full of shame, I tried to draw strength from the house itself, knowing that it had stood solid while the Great Depression howled through the land.

Danielle was self-employed as a residential realtor, with a gift for soothing sellers under duress and holding the hands of buyers. Increasingly, it seemed like I would also need to become my own boss. The news told us that a third of the workers in construction had lost their jobs, and few contractors or builders looked to hire a methodical carpenter who could relate to clients without someone watching over his shoulder. They wanted grunts who worked briskly on foreclosures, investment properties, and flimsy commercial buildings. It all felt really grim. I set up an LLC and that first year, I earned a third of what I was accustomed to as I did small fixes for the homeowners whom Danielle and her colleagues represented, and sometimes for the agents themselves. We certainly had no funds for improving our own house. But I was anxious to act and to use my skills there in some way. I started a few projects with demolition and maybe some framing, but they were sketches at best and lingering, self-inflicted injuries at worst. One day, tired of dealing with a sagging garage where we couldn’t park or keep things dry inside, I decided to tear it down. Our neighbor, Adam, helped me and it was cathartic.

Caleb started kindergarten while Hollis became his own little person, and I loved his style! Instead of crawling on hands and knees, he scooted across the hardwood on his butt, one hand on the floor and the other reaching for fun and trouble. The boys and I splashed in Bruce and Marilys’s pool at summer’s end. Across the fence, Norm and Joan were feeling pressure to move; to get closer to grandkids and away from the maintenance that engrossed Norm, yet had the family concerned for his safety. Danielle listed their house for sale, and its immaculate condition helped it to move easily. At the closing, however, Norm struggled to hand over the keys. Fifty years in the home where they’d made their lives! Our old neighbors went to a new development where crews took care of things for them. Sadly, Norm’s health declined after the move, and I wonder if he’d been grounded through those cyclical chores. Ryan and Jill, a childless couple around our age, now tended to things next door.

We continued to want for money. The accounting agonies of self-employment bedeviled me, and I had no head for estimating costs and profits. The high premiums for cobra health insurance were deflating us as well, and eventually, even that option ran out. We identified some short-term solutions, but one day, during a small gap between policies, Hollis had the first of many seizures. Caleb and I were in Albuquerque, where my parents were paying me to help them renovate their own home. Over the phone, Danielle described ambulance rides and hospital testing. Late the next day, Caleb and I arrived at Hollis’s bedside, where a tangle of wires snaked from his scalp. I watched him seize there in front of us, Danielle stroking him while nurses counted the seconds and then minutes as they ticked by. 

It was a life-changing diagnosis: epilepsy. And the news came with a bill for tens of thousands of dollars. It seemed like we should be the ones getting paid! Danielle talked the hospital into forgiving some of our debt, and our families helped when we got really pinched, but it would take us years to get free. Fortunately, business did pick up and I began to work as a subcontractor, giving us some stability. We savored life despite the challenges. I cooked elaborate and exotic meals in our kitchen and we fed visitors, including Danielle’s sister and the man who became a devoted stepfather to her children. The boys and I rode bicycles around the neighborhood and took long walks, climbing the hill behind the cemetery and counting all of the water towers that we could see. In the park beside our house, we rode saucer sleds under the streetlights. Halloween, Christmas, and birthdays were special for the boys as Danielle went all-out decorating and throwing parties for their friends. We weren’t able to do much else for our home, but its love for us seemed unconditional. I found a postcard from 1916 behind a molding, with the address simply listed as the original homeowner’s name and a numbered route. Once, during a nighttime power outage that blackened the entire neighborhood, the bulb in Caleb’s bedroom continued to glow somehow, and I thought of the little boy who’d seen lightning strike.

Beloved pets came and went. Our dog, Sneetches, died at the age of seventeen. She’d helped Danielle to judge my character when we first met, and she stuck around to watch us welcome two sons whom she adored. There were frogs and guinea pigs and endless fish. A stout black cat, Chumbe, came to nestle against us and patrol our yard until he wasn’t at the back door one morning. We adopted two dogs, Lottie and Luna, and they filled the house with frisky energy.

The recession ended as wreckage choked the hole that those moneymen made too cleverly. But to our south, Ryan and Jill prepared to move to a smaller place in the city. They’d once entertained the idea of starting a family next door to ours, but the downturn had decided things for them. Now they would go. To our north, Adam and Bella packed up to head in the opposite direction for the exurbs, where the culture better suited them. Greg and Sarah moved in with two busy boys. We stayed put. My own work returned to full strength as the community regained its confidence and guys whom I’d worked with in the past made contact. Although I’d liked the notion of being my own boss, in truth I knew I lacked the drive for sales and the follow-through to get paid on a timely basis. I simply wanted to put my hands on projects. Fortunately, a former co-worker did have some entrepreneurial mojo and he needed a guy like me. I was soon an employee again! A lot of the uncertainty lifted and we could unclench. Our family was able to take some road trip vacations, making durable memories. It was good to get back to our home afterward, but its unfinished parts were always waiting for us. By that time, we were able to do a little here and there, but that wasn’t cutting it. We were actually moving backwards! Our downstairs bathroom developed a spongy subfloor because of half-assed work in the past, and I tore it up and left it like that for at least a year. The missing garage was an ulcer in our marriage. I felt overwhelmed by all that needed to be done, versus what I had the capacity or frankly even the will to do with my own hands and time. Nearly ten years had passed since we’d envisioned the results of our cheerful handiwork. Now we were different people with different priorities and limitations. I was also feeling stiff and crampy all the time, come to think of it.

My ALS diagnosis mocked whatever resilience we’d shown before. Now, an implacable disease would call the tune and we’d better move, like to a whole different house! My cherished stairs were far steeper than modern codes allowed, and adding on to and modifying the place would cost nearly as much as what we still owed for it. It hurt to get chased out like that. But we had to set pride aside and ask ourselves: how in the hell would we get our house ready for the market? So much maintenance was overdue and so many projects long in progress, but we would be underwater if we tried to sell the home as it was. We needed to extract equity to pay for the life that my disease would demand. That financial imperative also meant that hiring a full-blown general contractor–while saving us time and headaches–could be a mistake. I’d stopped working, so that I could get my head together and do what needed doing while I still could. I was a carpenter, damn it! And I was experienced and creative and had friends in the business, and beyond that, this was my house and fuck ALS! Realizing at least some degree of our vision for the home and passing it on would be the way.

With the help of Danielle’s parents, we were able to move out in November. We found a nice rambler with a finished, walk-out basement a few miles from our house on Monroe. The boys could go to their same school. Now, we needed to finish the empty place for the spring market. A crew of friends had helped us move, and a huge group rallied around us on a bright fall day to paint the wood siding, clean cabinets, and trim the hedges at our old home. I limped around gabbing with everyone. It was touching to see how many people cared for us, but it was also difficult to watch folks who weren’t particularly handy do the things that were now physically beyond me. On a different Saturday, some of my old colleagues pitched in for another productive push, and it was great to banter and whoop with them like the old days. My parents came to stay with us frequently and would help for a week or more at a time. I enjoyed working alongside them, going over news and memories, laughing, and grappling with the weird way that I had leapfrogged past them.

I paid two carpenters to work on the house. Tom was one of my best friends in town, a good-hearted man who loved to learn and to collect the finest tools that money could buy. We discussed everything from political primaries to apex predators (maybe there’s a connection), but there were swells of sadness at times. His work was impeccable, whether he was taking down an old chimney or cutting maple quarter-round. The house and I both loved him, but he was often entangled in other projects.

Danielle met Chuck, an interesting man who drove with Uber, played music, and took occasional handyman jobs. So many musicians are carpenters! On the phone he assured me that this wasn’t his first rodeo, and we put him on the upstairs bath. His confidence was a bit unwarranted, but I had to look past the sloppy flaws and let go. He installed subway tile all around the shower area and up to the ceiling, and refinished the old tub to virgin white. The work would be good enough, but that had never been my target in building.

There were some individuals whose solidarity and kindness went way beyond anything we could’ve asked for. Though shaken from the early skirmishes of a divorce, one friend helped steadily for months. I taught her some insider techniques like California drywall patches. A couple with twin boys the same age as Caleb provided whole-family reinforcement on the weekends, and Greg from next door was always joining in if he was around and his kids weren’t too squirrelly.

We discovered more maple floors beneath the linoleum in the kithen. Why would anyone have thought to cover them? We paid to have the entire main floor refinished again, and the elegant surface was stunning. The downstairs bath got a period-faithful makeover, and we finally built a proper mudroom out of the two closet-sized spaces near the back door. We hired one of my former associates to replace the sloughing shingles on the roof, and nearly every wall got some fresh paint. In a controversial move, we elected to pass the task of building a garage to the home’s next owners. We could only handle so much! Danielle was still plenty steamed that I’d torn the old one down.

Beyond overseeing things, my own skills went toward mending buckled plaster and finishing the front porch, where I’d stripped and reinsulated the walls five years ago. Now it was time to install millwork and dress up the splintered beam against the ceiling. I knew that it would be the last time I’d use tools that felt so familiar in my hands. It probably wasn’t the safest thing in the world for me to be tottering next to power saws, but I was determined! The amount of work to be done was too much to contemplate in its entirety. I just tried to show up and work a little every day. It gave me purpose. Despite the one-time efforts of many and the steady ministrations of a few, I often felt abandoned as spring ran into summer. Didn’t people know how we were struggling? When I was alone in the house, crawling across the floor or straining to lift a nail gun or a drywall knife, I allowed myself to bellow and even scream with effort and frustration.

Finally, finally we crossed the last little things off of our lists. The place was ready to sell. I stood in the dining room, turning and taking it all in one final time. The vintage surfaces and fixtures; the lofty ceilings; the light through the wavy old glass with its vertical muntins; the generous millwork. The house felt alive and I was deeply satisfied. Again, I thought of others who’d sheltered there in the past. I thought of our family and who we’d been in that home. But we weren’t there anymore.

It took three or four weeks to get an offer and we accepted the first one. Amazingly, we sold the house for only fifteen thousand more than we’d paid for it, eleven years ago! But money was not what mattered most here. When I drove my scooter up to the desk where we would legally transfer ownership of the house, some of the smiles sagged. It was difficult for my hand to form a signature and to raise even a plastic flute to toast the transaction. The buyers, an attractive couple, were close to our age. There were three young kids in the picture, and hints of a fading divorce. So many comings and goings; so much turbulence! We walked with them to our cars afterward and the wind was stiff and cool. I thought of the winter nights when I’d lain awake in our former home, wondering what was to come.