Wintry Mix



















“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.




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…


“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.

Depth Finder

That dock was long behind us by the time I remembered the ice. No need to freak, but since we meant to eat like kings on this trip I’d prepared some of my finest sides and sauces and packed some choice meats. It would be shameful to let them go south on us. The pile of ice in the cooler was shrinking steadily, cubes fusing as they melted. We needed another bag or two and besides, I wanted to make a proper cocktail.

We’d seen most of the onshore action in La Crosse, but the river traffic was thicker than ever. Houseboats, cabin cruisers, sailboats, pontoons, runabouts, jet skis–anything and everything that could float–all weaving downriver in different strands of speed. Up along the bluffs, greens lapped over fading grays in a way that suggested big water ahead. In the nearer distance, a single-story building dotted a grassy point on our right, the paved apron around it suggesting a supply stop or a launch. We drew closer and it started to smell like we might get our ice after all! A small dock was promising, and then I saw the coolers against a wall.

We worked our way over as if we were exiting a freeway, turning to approach the shore at a right angle once we’d drawn nearly even with the dock. I kept an eye on the depth finder as its numbers tumbled. While we were coasting in, a sudden growl goosed me from behind. It had to be a cigarette boat with a nasty V-8, the motor’s overtones round and ripping like an electric guitar. I caught a blur of bikinis and mirrored shades over my shoulder. The distraction caused us to drift a bit too far with the current, so that now we’d have to tie up on the left or downstream side of the dock. It would be a little awkward, but nothing that I couldn’t…Shit! Now the depth finder read two feet and I saw the bottom, rocks the size of softballs all around the dock pilings and along the bank. It was too shallow here. “Caleb, do you think you can step off onto the dock ?” I pulsed the reverse, stopping our bow on the dock’s left corner. Caleb made the jump. Reversing again, I started to ease the wheel to the right so that I’d stay abreast in the current.

The first wave surprised the hell out of me. I was used to the rollicking wakes of our fellow pleasure cruisers, but this was almost surfable and it pushed my bow into the dock. A second wave kicked the boat sideways and she squealed against a rubber bumper. We were pinned as a third breaker loomed, it’s lip translucent green. Shit! Fat droplets beaded my sunglasses when it burst over us, and I cursed those speeding hardbodies as they made for the beach where they’d drink and canoodle.

Caleb came back with two bags. I topped off the cooler and filled a red plastic cup, pouring in three parts Jim Beam and one part Gosling’s Ginger Beer. The spicy, medicinal bite leeched the anger right out of me. Now, exactly where were we again?

The low islands and peninsulas between the bluffs and the channel sank into patchy grasses. Herons walked amid the stalks. Soon the Mississippi lapped between mirrored ridges, the valley all sparkling water topped with sky. The flotilla was dispersed by now, each boat on a separate heading. We kept pace with an cabin cruiser for about a mile as I studied its lines and the life they described.

The boat had a musical name and she hailed from Ft. Lauderdale, Florida. I saw an older couple purring on deck and felt a pinch of envy down in my abdomen. That was supposed to be Danielle and me in twenty-five years, living out our cruising fantasy, except that we would have a sailboat. We were going to study our charts and tie knots and speak the lingo and fix what needed fixing, because our dream would require it. We’d fish off of docks, watch eagles and porpoises, drink in harbor bars, and tuck into bunks together with the beat of the sea. It would have been sublime.

This past winter–not long after the river trip–we’d gone to Florida to hang with Danielle’s folks and they’d watched the boys while we got away to St. Petersburg. We’d arranged to stay on a sailboat through Airbnb. After dinner, I stepped stiffly along the docks of the marina, Danielle there to steady me as I eased myself aboard and into the open cockpit of our home for the night. I would have guessed that eighty-five years might feel this way, and it hit me that even if I degraded no further, too much of my physicality was now gone for our dream to be viable. I watched it fade and fall away like so many others.

On board our surrogate dream boat, we drank wine as showers stippled the canvas above our heads, sounding like a record before the music starts. Rain soon overspread the area. It softened the lights of office towers in the city and erased the boundary between sky and bay, sighing and swelling ever louder. It gave us a sensual screen of privacy, even though nearby boat owners had televisions on or were cleaning their decks nearly naked. Our own thoughts were pixilated, bright but disordered bits that slowly took on the depth and definition of what we needed to say in the dark. We talked about all of the things that we had been together. The ways we’d been alone. We spoke of coincidence and decision; memories and legacies; essences and residues. I told Danielle that I needed her to keep living once I’d passed on, and that I hoped she’d be unburdened by what should and could have been. I released her to move into something new and maybe have adventures with someone else who would love her. She wanted me to understand the ways in which I would endure and the bliss that she had felt with me. We kissed and cried and drank more wine while rivulets of rain found our backsides. Later we removed the wet clothes to polish what we’d built between us, and its gleam was all we knew.

Caleb and I traversed those wide waters beside La Crescent and La Crosse, a stretch that I’d only seen beckoning beyond the shoulder of I-90 until then. We made a diagonal for the east bank, running up against bluffs where the eagles wheeled. I caught the faint gray line of a dam in the distance and sometime around four o’clock that afternoon, we locked through.

Now we had the river’s attention. It regained is urgency, whorls haunting the places where current drilled beneath the surface. Caleb turned from his book to search the limestone and contemplate the blue-in-green reaches opening in front of us. His hair lifted in the wind. “Check it out, son,” I said, pointing at a metal sign on the western bank. We were now skirting Iowa, while Wisconsin still brushed by on our left. “Farewell to Minnesota!”

It was time to think about a place to pull over, but the banks kept pressing in, with only the small settlements of Victory and De Soto to break the growth until, finally, we got our beach. It sloped steeply, our prop in seven feet of water while the bow stuck firmly on sand. It was also wide and nothing broke the warm and clean breeze. I started dinner while Caleb pulled on his bathing suit and ran down the embankment, plowing into the water. He asked me to rate his efforts and I carefully considered form and degree of difficulty with each pass. I warmed the black beans that I’d hot-rodded back home and browned some chunks of pork on the skillet. Then I folded those goodies into tortillas along with jack cheese and the tart, pungent salsa I’d made in advance. A final bit of toasting and melting, and dinner was served. Delish!

In the calm before sunset, I fixed myself a fresh drink and relished the icy swallows against the heat spreading through me. Caleb snuggled close, wrapping a blanket around both of us. The cap rock on the ridges cooled from ivory and buff colors down through a filtered violet light. “Dad, you know how much I love you, right?” I was pretty confident that I did. “I…I just wanted to make sure, because you really mean a lot to me and sometimes I don’t know if you truly realize it. I just think you’re a great guy and an amazing dad.” Wow. I was floored, and I assured him that I while I’d always felt tight with my two boys, it was a gift to hear this pure feeling pour out of him. My own voice was husky and I had to focus on releasing the words from my throat, but it had nothing at all to do with ALS. Caleb continued. “I’m just so sorry you have to go through this, Dad. And I really don’t want to lose you.”

We hugged and squeezed each other’s arms and shoulders and hands, and after a while we got quiet and lay on our backs beneath blankets. The breeze kept the clouds and bugs off of us. With only a thin rind of moon remaining, the stars came forward while the rush of distant freight trains and the river’s whisper bore us away.

The next thing I knew was the sound of outboards approaching in pink predawn light. I hate to say it, but some fishermen on the river really piss me off! I’ve certainly spent delightful hours casting from the catwalks of bridges and I’ve wetted lines on deep-sea charters and johnboats. But, not only did I avoid disturbing anyone around me, I also probably looked like I was having fun. On the river, it seems like too many fishermen are either stone-faced killjoys hovering territorially near the channel, or else they’re blasting past me hell-for-leather at 5:45 in the morning. I’m sure if I spent some time with them I’d have a different impression, but I only know what I see and it’s a certain breed. Maybe they don’t wave because they don’t recognize me as a brother in their focused pursuit. To them I’m just some clueless guy who must not get out on the river very often. Otherwise I’d be fishing, too!

Well, I suppose I did want to get an early start, and Caleb slept on while I backed us off of the beach. We were just above the town of Lansing, Iowa. As I finished making a cup of gourmet instant coffee, the girders of a bridge came into view and it was weird because the bridge looked to be parallel to the bank, and it seemed like the river just ended up ahead. The channel made a hard ninety, in fact, and I wondered what turns the coming day had in store for us. We would push for Dubuque, that much I knew.

To be continued…

That’s the Life for Me

Bugs churned in the beam of Caleb’s flashlight. Bats and small birds flitted above the river, feasting as the bottomlands cooled and the breeze died away. I sure hadn’t planned to be out here and under way at this hour. Two consecutive towboats had gotten star treatment from the lockmaster, and we’d had to drift on the wide pool above the dam while all of their barges stepped up the river. It had taken over two hours, and though a delicate sunset had made the wait less agitating, we were left to search for a decent beach in the darkness once we’d finally locked through. I’d never been on this stretch of water before and its banks were dense with driftwood, bushes, and rocks. I saw no signs of a stopping point.

The low-pressure sodium lights of the dam slid behind a bend and left things hushed and close all around us. My phone’s map application put us a few miles above the small town of Fountain City, Wisconsin. There tends to be dredging, and therefore more sandy banks, near the small towns strung along the Mississippi, and we could expect some sort of a place to pull into. The river thrilled me, but I knew we had to get off of it. Earlier in the day, I had envisioned pitching the tent at leisure but now I’d be happy to secure the boat, eat, and then stretch out on the bench seats for the night. I wondered if Caleb shared a smidge of my anxiety as we passed the red and green strobes of channel markers, but saw no breaks in the banks. Finally came one and then another houseboat tucked in for the night, families chatting by lamplight. A hundred yards farther and there it was, a steep sand ledge about thirty feet wide and bright between the tight scrub at the water’s edge. I angled for it, raising the trim and watching the depth. No ripples to suggest a wing dam or a snag. Closer, closer, cut the wheel and gun it in at the last…got it! The bow lifted and we stopped about a third of the way out of the water. I killed the engine.

The smell of the hot Italian sausage, onions, and peppers searing on the butane stove was intoxicating, now that the tension had dissipated. An infinity of small insects hovered, a few of them sticking in the pan. The bugs didn’t bite but they tapped and tickled into us. Caleb was trying to be a good sport. He ate hungrily for a bit, noticed the extra additions to the glistening dish, and then decided to wrap himself in a blanket and try to flee into sleep. I sat back for a bit and searched the sky. It was changing, growing opaque and featureless. There was no moon or breeze and the ridgetops of the bluffs were indistinguishable in the dark. The current seemed almost loud under the clouds, but it lulled me anyway.

Sometime in the night I awoke to slap at the whine above my forehead. Mosquitoes, and I realized that rain now dimpled the river. Our blankets were damp beneath the square ceiling of the bimini top, but not soaked as the drops fell dead straight within the stillness. That was a break, but this was not an auspicious way to begin our big trip. It was a trip that required me to consider logistics. I had planned and prepared, but I lacked the funds and, more distressingly, the physical dexterity and stamina to collect and deploy every piece of gear that we might conceivably need. At some point we had to trust in luck. Please let this go well. Please, I really feel like we deserve it. I heard Caleb turning and fidgeting and I hoped that he could get beyond these discomforts. I hoped for a lot of things as I lay awake, my muscles jumping and twitching beneath the skin.

That took place precisely one year ago as I write this, and it was about five months after my diagnosis. When I had turned 40, before I knew the cause of those cramps I kept getting, I’d vowed to get big into outdoor adventure during the next decade. Mostly with, but sometimes without my family. I thought about hiking in the backcountry and running whitewater. Exploring wild islands. That all came apart when I won the inverse lottery of ALS. My ambitions would need rethinking. Big time.

Danielle’s father, Mac, bought our boat back when we’d just moved to Minnesota, sometime around ’06.  She was a SeaRay, a deckboat that had it all: seating, storage capacity, a powerful engine, and a shallow draft. It was all meant to bring the extended family together on the water. Mac rented a slip in a marina to make it easy. There would be beer, sandwiches, swimming, and camping on the sand dunes around the river town of Wabasha, just downstream from what Mark Twain called “the incomparable” Lake Pepin. It mostly went just as planned, but over time the groups grew smaller. Danielle and I and the boys continued to dream of our boat during the bleak winters, and we headed out in sweatshirts when snowmelt fed the headwaters and only packed up for the season once all of the leaves were down. I think that I’ve probably loved that boat more than anyone. And from the beginning, I’d been aware that she wasn’t contained within the shoreline of a lake. We had the ability to travel thousands of miles if we dared. If we truly wanted it.

That long first night of my trip with Caleb resolved into a dawn stirring with church bells. It was early Sunday morning in the nearby town of Fountain City. Those bells seemed to dispel whatever bad juju I’d imagined in the dark, and I fired the ignition and pivoted into the channel, heading downriver. The rain had moved out. Caleb slept heavily and didn’t awaken until we were inside Lock and Dam #5A.

The upper Mississippi knows the hand of man, however briefly in the span of deep geological time. Dams divide it into a staircase from the Twin Cities to St. Louis as the elevation falls. These “improvements” deepen the river and permit commercial navigation, helping corn from Iowa to sweeten candy in Japan with a minimal expenditure of energy. The barges push on day and night with their hulking tonnage. But the river is vengeful, recently sweeping a state-of-the-art towboat over a spillway and extinguishing her crew in the foam below.

Within the lock, a walled rectangle as long as two football fields, I kept the boat centered while hydraulic motors sealed the upstream gate. Water raged through drains beneath us and we fell nine feet in minutes. Once the turbulence was over, the lower gate parted, exposing a fresh vista. The signal light blinked green, there was a sharp blast from a horn, and we were heading out.

The current measured about three miles per hour. I set our throttle by imagining how the surface would look if I was jogging on top of the water, like people do on those moving sidewalks at the airport. That meant that while the banks were clipping past us, we could relax. With breaks for meals and passing through dams, we would average about seventy river miles per day. A perfect pace for the valley to unspool before us. We entered the outskirts of Winona, Minnesota. A new highway bridge was under construction, its ramps rising from both banks. Barges sat ladened with machinery and scaffolding, unmanned on this holiday weekend. Labor Day. What I would’ve given to be able to labor again, and specifically there in that setting. To climb and hoist things and to swing a hammer against steel; to laugh and swear in the sun and to watch clerks scurry through their lunch hours. I wondered if those guys knew how lucky they were.

Watching over all of it was Sugar Loaf, an iconic bluff with a spire of bare limestone. The site of a quarry in the nineteenth century, its mass had become the foundations of the town. The bluffs had seen much. They were part of the driftless area, a region that escaped the scraping of glaciers but was deeply carved in the outflow following the last ice age. There were rocky fins and cliffs atop green flanks waving with trees. Lower elevations held a few buildings and industrial installations. The town tapered off and we were again alone on the water, the sky clean and pure and a breeze building out of the south. The channel hugged the steep base of the western bluffs, where railroad tracks ran on a terrace just a few yards away. An orange locomotive bore down on us. Caleb stood and tugged the invisible cord of an air horn, and the engineer obliged, goosebumps chilling us as our souls sang in unison. Wow!

Caleb took the helm as I went forward. I rigged a windshield for the stove with the top of a storage bin and started crisping some thick-cut bacon. My son’s head was tilted back, his nostrils flaring with pleasure. Behind him, our wake played upon the water and all was right with the world. This was what I would give to him. This moment and this feeling to revisit time and again.

Time, and it seemed I had a short supply of it. I wanted my boys to know the natural world with me, and while I urged them to appreciate the complex logic of its systems, I also hoped they’d notice that its moods scaled to their own. I hoped they might relate to the ancients who worshipped the storms and seasons. They certainly knew its power, because lately nature had been intimately cruel and personal. “Dad, why do you have ALS?” young Hollis had asked me. I started to talk about biochemistry, and finally tied it to random misfortune. He seemed accepting. But, would he try to personify the monster in one of his vivid drawings? Would he ponder it’s appetite for me?

The sheer momentum of my disease suggested the supernatural. At times I wondered if I’d conjured it, or whether it was my destiny. Had I overdrawn an account when I’d thrown in with strangers to tour in a rock band, at the same time that Danielle and I were feeling our way into a relationship? When both of those things had actually turned out well? When my wife and I then conceived two kids without guarantees of anything? When the career I’d simply fallen into had satisfied me and more? Or had my lack of initiative at pivotal times during the last decade–despite getting away with airy carelessness in my youth–quickened a beast that would have me submit, if I wouldn’t drive my own life?

Surely this was madness. I pushed these musings out of my mind as Caleb moved the throttle to neutral and we ate our bacon and fried eggs in gratitude. The boat twirled in the current, waves thunking on her hull. “What do you think, guy?” I inquired, gesturing from our plates to the lordly scene around us. “This is the life for me, Dad,” he said. Good. So very good.

Before long we were coming up on La Crosse, Wisconsin. It had the nicest and most developed waterfront that I’d seen on the river. People held hands on benches in grassy parks, and there was a nice promenade with strollers and dogs upon it. The wakes from dozens of pleasure craft intermingled as we passed beneath a graceful and modern-looking bridge. During my preparations for the trip, I had noted the locations of marinas and gas docks. We would fill our tank here.

Easing up to a dock and tying off, we surveyed the scene. A knoll rose above us with a restaurant on top. The diners looked relaxed and sporty, and we felt like bums with our storage bins and blankets and my sunscreened stubble. The young man at the pumps eyed my hat emblazoned with “Wabasha Marina”. He wanted to know where we were heading. “Probably Dubuque,” I said. “Why stop there? New Orleans or bust, baby!” he exclaimed. “I’d love to, man. But I probably oughta get this guy back home someday,” I said, nodding at Caleb. “Naw! This is the education he needs, right here.” He looked over the water. “I say keep going.”

We re-entered the channel, one boat among many now. Where were they headed and what were their stories? Was life all good for them? I knew that we were probably alone in our sense of mission. Should we extend it, keep on going like the man had said? It was tempting.

To be continued…


A Seventh Heaven

We used to get it. Statewide, school could only start if Labor Day was spent. We all felt the nights running crisp while water held its warmth. Everyone wanted a final, extended weekend. But this year, in our local district, the buses roll in August. The powers that be are worried about STEM and globalization. They’re likely right to worry, but still.

This year, Caleb will be in the seventh grade and Hollis in second. Caleb starts junior high. When I was his age, in Dekalb County, GA, seventh grade was the last rung in elementary school. Eighth graders were sub-freshmen in high school. My family moved to a new district during the dividing summer, to a place where I knew no one. A big change was coming for me regardless, but seventh grade wasn’t just the end of an era. It may have been the best of my formal education! Too much of what followed was a slog.

Pleasantdale Elementary sits in the subdivision where I lived, and I walked or rode my bike to school. Our principal was Mr. Chivers, pronounced like the shakes. He was a steady presence and didn’t take guff. My vivid memory of him is from fourth grade. I was alone in the hallway while class was in session, maybe running an errand for the teacher. I heard shoes scrabbling on the polished floor, and then hard but measured breathing. Around the corner came the principal, dragging an older boy by the wrist. Dusky Green was a known asshole and a troublemaker. Mr. Chivers’ face, always red from rosacea, was impassive. Dusky twisted and lunged for purchase on the painted block with his free hand, snagging the edge of a double door opened toward them. The door swung home with a thunderclap. Mr. Chivers didn’t flinch, just kept on dragging Dusky toward an epic reckoning. Dusky writhed and screamed, “I hate you! I hate your guts!” As they approached, I flattened against the wall. Neither one of them saw me as they struggled toward the school’s office. I felt weirdly privileged to witness such drama, and I’m not sure if I told anyone about it at the time.

The other mythic male figure at the school was Mr. Beal, who taught physical education. A large black man who wore track suits and a whistle around his neck, he resembled the rapper Heavy D. His students amused him, but he flatly told kids to shut up. The whistle stayed loose in his lips like a professor’s pipe, and its chirps and blasts kept us all in line across the courts and fields. He taught us to jump rope and count out pushups. We moved our bodies in celebration with The Village People, and learned to slow dance and two-step to “Looking for Love” and “The Gambler”. There were many innings of kickball, cross-country footraces, and wide receptions that convinced me I had a future in the NFL.

Dodgeball was the purest form; the playground sport of kings. One particular kid perfected it: Troy Rucker. Yes, we boys rhymed his name with a whispered, “motherfucker”. And he was exactly that on the dodgeball court. His gift was for the attack, when he would emerge from the backfield with the inflated rubber ball and eye the formation before him. He accelerated toward you, hips pivoting as he loaded his thighs with potential energy. His torso opened while he cocked his throwing arm and readied the fast-twitch muscles. Perfectly planted and aligned, he was free to channel a primal fury. His lips shrank away from the gums and his eyes rolled back into his head as he roared from the crawlspace of his psyche. He was pure malevolence.

If you were in his cone of destruction, you had a choice: try to dodge or hope to catch the ball cleanly. You had just a blip to commit. If you elected to catch and positioned your arms in a breadbasket, the ball slammed against your sternum. A pressure wave rippled into your genitals, closed your throat, and blew out of your tear ducts. Assuming that the ball hadn’t ricocheted off of your chest, it would slide from your grasp as you collapsed. Troy’s grimace became a loose-lipped grin. He was magnificent!

I should sketch a self portrait from this period. I was tall and wiry with blow-dried, parted hair. I wore sneakers with air in their soles, displayed in oblong portals. There were jean jackets and surf shirts. I wore glasses. Big, bug-eyed, aviator style frames. I can’t adequately explain how unfortunate they looked, but I suppose it was the style then. The glasses distorted some social anxieties. I was hardly a dork, but I was docile and sensitive. Green. Straight A’s came easily, while giving opinions and flirting with girls did not. As people labeled me in the offhand ways that we all do with others–often based on their appearances or how they carry themselves–I internalized what I took to be their judgments about me. I grew timid behind those big lenses. Embarrassed to be the smart and shy guy, but afraid to break out and be more than that.

I loved to read. History, fiction, news magazines, science, travel, all of it. Words were far more dimensional than any tv show, but many lunch hours dissected racy and reckless bits from screens. I feigned familiarity, although I did get to appreciate “Miami Vice” when my parents allowed me to watch it with them. They usually chose to err on the side of overprotection. I feel that this was a missed opportunity for them and for me. Had we watched, together, some of the stuff that they were always labeling, “inappropriate”, they could’ve commented on characters’ authenticity. They could’ve been goaded to talk about their own experiences. I could’ve learned more about being a man in a shallow and contradictory culture. With them. I don’t imagine that they presumed my endless innocence. I just think that they, like many parents, were a bit squeamish. They certainly meant well, though.

I really read my ass off, almost anything with print. I was many leagues beyond grade level. But, given passages to read aloud in class, I adopted the hesitant and flat diction of my peers. Happily, math and science rarely saw the spotlight pin any one kid. I was free to know my shit. Seventh grade geometry focused on word problems and precise arithmetic. Ms. Cleveland was relatively young, and spunky and attractive. Many years later, when I scribbled on the raw drywall of a new house, sweating the calculations for a stair railing, I pictured her face. I recalled her classroom as I dusted off the Pythagorean theorem to square a foundation. That was probably my last year of real world, practical math instruction. I had no love, and certainly no future use, for the process-heavy algebra that followed, and no patience for its dry puzzles.

What really got me that year was science, when Mrs. Walker taught us about living things and the workings of the earth. Massive forces over mighty spans of time. I still remember the introduction to cellular biology, and the concepts of the mitochondria and cytoplasm were familiar when I encountered them twenty-eight years later, researching ALS. The intricacies blew me away. That year, our big project was to build a habitat for an animal, and to then record our observations. I stocked a glass terrarium with ferns, rocks, and a pond. Then, I carefully introduced a type of lizard called an anole. It could change its coloring depending on surroundings and mood. I caught crickets in the grass and my lizard stalked them, pouncing for the kill. I was so proud of it! Mrs. Walker had a way of drawing her students out. Even me. She was a wise and organized teacher, able to compel the attention of hormone-addled kids.

And addled we were. Girls were ripening by the day, and though us boys were a bit late to the party, things were certainly stirring. George Michael and Prince were all over the radio. I began to feel an inner itch. I noticed girls’ hair and glistening lips and caught sight of the tops and sides of their breasts. That itch began to burn pleasantly, then built into a molten core of desire that’s lit me ever since. It’s more than just physical now; not simply sexual. It deepened into yearning; into spirit. I hunger for landscapes; for starry skies and saltwater; for round rock and the winds of autumn. When I search my wife’s eyes, her face contains these things and more. But back then, the frisson of eye contact–of briefly melding with another person–was too intense. I wasn’t ready to look.

There were two girls after me that year: Jenny and Kelly. They were friends with each other. I’m not sure what sort of arrangement they had–how they determined who would lead and who would defer in their pursuit of me–but they were determined. They liked to ask me questions about science. I guess they thought that nerds were hot! None of my buddies had girlfriends or anything, and I was weirded out. One of the girls called to invite me to some function. I was nearly healed from a minor cut, but I moaned that, “My stitches are really bothering me”. So, so lame! Even sorrier was this incident: we were in class when one of my admirers called my name from the desk diagonally behind me. When I turned she looked into me, opened her thighs, and blushed deeply. I probably just laughed, all nervous. Definitely didn’t follow up on that. Now I kick myself. Hard. Good Lord, I could’ve had some action in seventh grade! But I wasn’t ready. I didn’t get that she was made from the same stuff as me; that the world was in her, too.

That era was certainly awkward and even painful at times, but in my memory it glows. It lights much of who I am, like it or not. It got me started into adulthood, gave me material to work into something fuller and stronger. Of course, I can’t wrap this up without mentioning my best friends from grade seven: Mike Harbuck and Brian Guffin. To do them justice, I really need to write separately about our adventures outside of school, especially in summers. Until then, thanks for playing!