Depth Finder

4

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 a 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 as 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!

 

 

 

Fair Game

In the minds of many, the last half of August belongs to the state fair. I’ve been just once. Danielle and I brought Caleb when he was four years old, and she was pregnant with Hollis. After squeezing through crowds of sweating people—some of them strangers to sunscreen—and stopping to gobble a deep-fried candy bar, we ran against a tent with mesh walls. Inside were said to be thousands of butterflies and some exotic jungle growth. We could hear excited youngsters. Danielle decided to park her pregnant self outside, next to the tent’s exit, to rehydrate while Caleb and I tunneled in and paid for admission. 

The scene within did not disappoint. Saturated color and graceful symmetry bobbed all around us, and the butterflies alighted on our heads and bodies and put us under their spell. The trance could not be broken, even by amped up kids who were far more frenetic than the insects. At first, I stayed with Caleb as his impulses carried us through the tent, its gauze walls admitting the crowd’s murmur and the hot dogs’ rendered fat. After some time, I drifted to the gift shop in a corner, admiring the glass pretties and turning now and then to follow Caleb’s meanders. This place was so unexpected! It was an oasis. It…wait, where did Caleb go?

I could see maybe forty kids in the tent, but none of them were my son. Okay, he’s in here somewhere. Maybe behind a bush or something, right? Stay cool. I got methodical, looking each child in the face. After noting that he or she was not Caleb, I moved on, sweeping slowly through a scene that no longer enchanted. No sign of him. I wondered if I was too calm, and if Danielle would suggest that a major freakout was in order. Danielle. Right outside the tent’s exit!

At the doorway, I asked a young guy if he’d seen a kid go out by himself. Nope, sure hadn’t. Blinking into hard light, I met Danielle, who looked confused and accusatory. She was alone. “Where’s Caleb?” I explained that I’d lost track of him, that he just wasn’t in there. But he wasn’t with her, either. And he was four years old. “What?! Oh, shit!”

We didn’t draw up a search plan with x’s and o’s on a napkin. She took off running along the tent’s perimeter, scanning the crowd and calling our son’s name, more ragged by the second. That tipped me over. I re-entered the tent through its exit, to search one more time. My pulse was jacked, and though my armpits squirted sweat, I felt chilled. The mash of colors inside the tent made me nauseous. Again, I wondered if I was acting too deliberately. “Caleb? Caleb?” My voice sounded shaky and weak. The squealing kids and the butterflies paid me no mind and I hated them. Some other parents looked up, recognizing something raw and out of place in this wonder bubble. He wasn’t in here. Not in here. Not fucking in here!

Now I dashed outside again. The crowd was no longer made up of individuals, it was a swarm that had swallowed my son. My only son, whom I loved to pieces. He was so bright and happy and I’d failed him. Just because I’d been checked out for one little minute. No!

Then they were coming toward me. Both of them. Crying. “Where were you, buddy?” Danielle had found him by the tent entrance. He’d lost sight of me inside and had bolted out through the entrance tunnel. Once outside, he’d whirled and scanned his small horizon as the crowd enveloped him. He’d been confused and panicky. Two women had watched with concern and then alarm as a lone man approached and beckoned Caleb to come with him. The man had taken him by the arm. One of the women asked our son, “Is that your dad?” The man had spun and melted away. The ladies comforted Caleb until Danielle found him. Whoa.

What I felt when I thought I’d lost Caleb is nearly indescribable. It was a compound of fear, guilt, anguish, and sorrow. I’ve only felt a comparable emotion at one other time in my life. I’ll bet you can guess when that was. I’ll show you what that was like, in time. Until then, enjoy the glory of summer!

 

 

 

So Then

So, then. In my adopted home state of Minnesota, people use that phrase once they’re past the pleasantries. It clears throats and cuts the silence. Cuts to the chase. The “so” is emphasized and elongated, requiring the speaker to slightly purse the lips and lift the vowel.

My name is Jason Carr. I’m writing to you because I have ALS, or Lou Gehrig’s disease. Before illness found me, I used my body to express myself, relieve stress, and earn a living. All systems were go. I played guitar, cooked, swam with my family, and worked as a carpenter. I ran up snowy hills and down sand dunes, mowed the lawn, drove my truck, and walked dogs. Those pleasures are no longer accessible to me. They gradually slipped away over the past two years. At the time of my diagnosis, I was a fit and trim 40 year-old husband and father. I was comfortable with who I was and with the trajectory of my life. The loss of my physicality has been brutal. The disease tears at my self-image, my sense of well-being, and even my masculinity. Oh, and it’s terminal. It sucks, and there’s a lot more sucking to come. We’ll talk more about ALS, but for now you should know that it’s a progressive neurodegenerative disease that destroys the wiring connecting the brain to the voluntary muscles. Once in motion, it’s unstoppable. There just are no proven and potent treatments, and before dying from respiratory failure, victims will become mostly or completely paralyzed. In a sick twist, senses and thinking usually remain sharp. Yay!

So, I’m in dire need of release. Like I said, I can no longer go down into the basement and take out my guitar and rip into a minor blues. Can’t pummel any heavy bags or sprint through the woods. I can write to you, though. I think it could be really good for me, and maybe for you, too. I’ve read several blogs and memoirs by and about others who’ve been through this. Some have been deeply introspective, philosophical, and spiritual. Others have chased humour and adventure through the nightmare. And some have detailed the lengths to which they’ve gone in order to stay alive. Most were a blend of these elements, with a unique mix for each author. I want to give you an idea of what it’s like to suspect that something is horribly wrong with your health, to receive a hopeless diagnosis, and to then steadily lose things that make you, “you”. I also want to share the ways that I’ve been looking to adapt and learn and hopefully grow in spite of this shit. I want to revisit past chapters from my life. I want to lay a few of my favorite things on you. I want to give unsolicited opinions and advice and make closing arguments. I definitely want to share some recipes and handyman tips. I hope you’ll indulge me.

My family and I just returned from a two week tour of the southeast. It stirred me up inside, seeing people and places from ten, twenty, and thirty years ago. We saw my elementary school, sadly shabby in a revitalized Atlanta neighborhood. We gathered with high school buddies at a place along a river where I’d had the highest times, laughed in Athens with the echoes of my rock band, detoured to the Carolinas to learn from friends about refurbishing national parks and flying small airplanes, and stopped in Savannah to see the exact spot where I realized who my wife would be. I stuffed myself with shrimp and grits in St. Augustine and we drank strong coffee with cousins in Auburn, Alabama. It was great! It was also heavy. Remember how in the movie, “Back to the Future”, Marty McFly keeps saying, “That’s heavy…”?  Then Doc asks him whether, in the future, something is wrong with the earth’s gravitational pull. When you have ALS, something does feel increasingly wrong with gravity and it’s hard to stop noticing it and the implications.

I believe that it’s good to be mindful of one’s mortality. It makes life more vivid as you realize the stakes of your choices and the fleeting nature of your options and abilities. You’re invested and present. But being mindful of one’s ALS is a drag. It spoils experience like burnt garlic or rancid nuts in an otherwise delicious dish. You can’t get past it. It’s an out-of-tune instrument at a live performance. The other night, a friend remarked that he sometimes forgets I have ALS. I forget, too, for blessed moments. But when I recall the full picture, what I sometimes feel is envy for what I used to have and who I used to be and for other people. I feel I’m being cheated. And envy sure isn’t conducive to happiness.

We all have our troubles, though. I see that more than ever now. I have had amazing luck in the main of my life, and I hope that I can make it clear just how fun and interesting it’s been and still is. This writing will remind me. I probably should have started a long time ago. Thanks again for indulging me.

Jason