“Now I Lay Me Down to Sleep”

I have a tender affection for bedtime. Many people stave off the opportunity. They fear missing out or leaving a thing undone. To them, sleep represents time going to waste.

I embrace going to bed. Rest is only part of this drive. It is also a nod to the ancient rhythms of the Circadian Cycle. Mine seem connected to sun cycles. Darkness of night whispers rest and restoration. Daylight signals wakefulness and productivity. (The definition of “productivity” is quite elastic in my world view.)I definitely fall in the category of “early to bed, early to rise”. This generally places me in the role of outlier.

Unlike most kids, I never fought going to bed even though our times trended early. Who could blame Mom for tucking us away prematurely? We were bad kids. Our constant squabbling and badgering certainly took its toll. And retiring us early provided more time to bicker with Dad. This was an expression of love in their highly – charged relationship.

Bedtime with mom was highly ritualized.There was perfunctory teeth brushing and perfunctory prayers. My goal was to get through the “now I lay me down to sleep” as quickly as possible. It came out as, “nahmahlamydowtasleee…” I seemed to be training for a career as an auctioneer. Mom cheerfully abided by this process. She wanted it over as much as I.

It was different when dad put me down. He was a fine storyteller with a flair for suspense. He once terrified our Boy Scout troop while on a camping trip to the Pine Barrens of New Jersey. Dad convinced us that a colony of inbred swamp people were watching our campsite at that very moment. Even the adult troop leaders seemed reluctant to turn in. They reinvigorated their campfire several times. Dad was quite gratified by this impact. He slept soundly.

Dad affected a deep stentorian voice for his narration. He offered sound effects and proximal animal sounds. Just when you were spellbound, he would say “I’ll tell you more next time”. Dad completely understood his audience’s anxieties and wants. It was also a subtle method of control. Good behavior was translatable to tokens to be placed in a slot called “more stories”.

Mom or dad would head downstairs with the mistaken notion that sleep was in the offing. Fat chance. The twilight was my time. I sometimes read the”Hardy Boys” or Baseball Digest. My tabletop radio would go under the covers when I felt extra bold. I then tuned in the Phillies game. That radio got pretty hot. Surprisingly, no fires were kindled.

Fast forward about forty years. Allison introduced a concept of the “sleep-nest”. This was a combination of down comforter, soft sheets, antique linens, nine or ten pillows, and hospital corners. The bed was tight, warm, comfortable and extremely appealing. Windows were always open making the bedroom frosty. Indeed, a nest. My affection for bedtime grew to new heights.

Enter a new reality. ALS has siphoned away my mobility. I can’t rollover or get into bed. I’m out of the nest. A wheelchair is my new sleeping quarter. It is infinitely adjustable but clearly designed for one. No room for intimacy. Each night, a single button lays me out flat. Allison places a pillow beneath my head and a sheepskin mat beneath my feet. With a flick of her wrists, she settles a down comforter on top of me and tucks it in. Really, not a bad nest. It is built with love and brings peace. I clasp my hands together as in prayer. This is my position until the first gray light of day. Still an early riser, I rise up to face the day.

Advertisement

Whatever it Takes

It is 1969 and I’m amongst a picket line of hitch hikers just east of Oakland California. We are strung out along the I-80 entrance ramp. The sun is setting on the age of Aquarius and most drivers aren’t picking up scruffy strangers. Experienced hitchhikers understand this shift. We sustain a gentle competitiveness and subtly sell ourselves. My marketing plan is straightforward. I am single, traveling light, and don’t have a dog or guitar. Traveling light also describes my wallet. Contained therein: Six bucks, a fake ID, and a drivers license.

At 17, I have thousands of miles of hitchhiking under my belt. I am more resolved then worried. 3000 miles of open road is just a puzzle to solve. At most, this is a five day trip. That’s about a dollar a day for food and drink. Sleep will be grabbed while in motion. I am entering a realm best described as “whatever it takes”.

Just three years later, the treasury is empty once again. I am in southern Colorado and have just flunked out of school. There is a big industrial sawmill on the edge of town. A skeptical foreman is eventually convinced that I am the right candidate for a job sorting and stacking lumber.

After inserting my white ass, the crew was now “only” 98% Chicano. This was the era of “La Raza”. People of Mexican heritage were no longer taking shit from Anglos. Reverse discrimination was new to me. I needed the money and survived intimidation and pounding isolation. It was a price paid for screwing up.

Each day, the work whistle blew at 7 AM. Standing in the din of whining blades, I pulled on my pitch-encrusted gloves and rounded up a deep breath of sagebrush and smoldering saw dust. It was time for my daily mantra: “whatever it takes”.

I was now in the cycle of menial, low wage labor. Over the next five years, I loaded, drove, sorted, drilled, painted, stacked, printed, and cleaned. Straight time pay never exceeded a hundred bucks per week. Nevertheless, I harbored a belief that hard work, dependability, and initiative would signal a worthiness for more. And eventually it all worked out.

Yet I continued to dance on the edge of self –inflicted breakdowns. It did not just involve money. I once mismanaged water. On a hot May afternoon, I was near the bottom of the Grand Canyon. The hike back to the rim was nine tough miles. Water and energy were low. Once again, I was isolated and in trouble.

It was a long afternoon. At each switchback I sat down and rested. On the steep pitches through the Redwall, I quietly murmured, “what ever it takes, what ever it takes”. This misadventure was due to a disregard of warnings about heat. I had done a dozen strenuous canyon hikes but always in the fall and winter, never in the baking heat of late spring. I almost became one of those dire stories used to warn away foolish tourists.

I had more resolve than brains and more optimism than ability. After digging deep holes, I always clambered out. It was both a strength and weakness. I never learned to prioritize goals, plan judiciously, or recognize my limits. A bit of crafty resolve, a dab of native intelligence, and smiling good fortune was always at the ready. Yup, whatever it takes. A lifetime of near misses was offset by missed opportunities, a general failure to advance, and a trail of faded relationships.

I write these stories with the help of voice recognition software. ALS has bound me to a wheelchair. I dribble a bit while eating and my shirt is stained with food. I might smell of urine and generally sit in a galaxy of crumbs. But this morning I made a tasty pot of coffee. It wasn’t easy. Standing was a perilous challenge and measuring beans was quite inexact. But it tasted damn good. I can still call down a ration of “whatever it takes”.

My Height of Land

My good friend Tim And I were returning from a mountain bike trip way up in western Maine. Tim is a part-time resident of this region but is a full-timer in his heart. He can fill the air with tales of of these lands, many based upon boyhood adventures. These anecdotes are rich with reminiscence and told by a great storyteller. I am always all in.

Not long into our trip Tim pulled over at the landmark known as the “Height of Land”. It is a place of long vistas, providing a close-up of Maine lakes and a longer look towards the White Mountains of New Hampshire. it is a stunning view-scape

It is also a dividing point. Going North, you return to the Rangely Lakes. Going south, you drive into the White Mountains of New Hampshire. The topography defines a leaving behind and a going towards. It is unspoken that either option involves a long downhill ride.

And so this becomes a life story. I am crossing my own height of land. Looking back, I have been living with ALS. Going forward, I am dying with ALS. This is more than a change of perspective. It also reflects a different reality. Until now, each functional loss could be replaced with an alternative function. No more. I now rely upon Allison or assistive devices. This is not what I signed up for. Living in wheelchair 24/7 is not something I mind. Being a burden on others is something I do mind. Constantly asking for help sucks.

There is also a loss of connection. Allison and I communicated in our private yakkety-yak. This rich patois was a mix of slang, shorthand, and other non-verbal nonsense. It was profane and distinctively us. Now my fractured speech is a low growl. It requires an intentionality that bypasses the brain’s regions titled “humor”, “insight”, and “emotion”. Even my expensive voice recognition software treats my words with contempt. This is akin to a loyal hound leaving for a warmer hearth.

The unwritten “Book of Life” doesn’t contain a chapter called “Dying: an Eighteen Month (Mis)Adventure”. Or, “The Guide to Online Shopping for Short Timers”. I know, bad jokes. And the reality is that I still control the narrative. In fact, the book is being written right now. There are still a lot of words, stories, and the emotions tumbling around on this bumpy ride down from my height of land.

    More to come. Stay tuned.

Dreaming

My dream catcher is an erratic gatherer of small notations, marginal acquaintances, and surreal oddities. It aggregates these things and restages them in settings of long ago. Somehow, interesting stories emerge.  There is an unruly cohesiveness.

Dream experts would say that I’m not good at finishing things. Many dreams involve musical instruments that I can’t play or being underdressed in front of large crowds. It is true. I put things off until the pressure becomes unrelenting. And then I put it off further.  This story is being written while I am supposed to be producing content for a program under construction and behind schedule.

Another oddity is a longish news cycle. My dreams don’t include events of the day. Content is more likely to be mined from previous days. It is akin to eating leftovers.  It takes extra days for the flavors to blossom. I run behind in life and in dreams.

My dream catcher is kindly. It chooses not to recognize a life with ALS. I run, swim, and bike. There may be some weird distortions. But I am out there moving about even if I am occasionally bare-assed in front of a crowd.

Some guy with a Leadville 100 T-shirt boarded a flight that I was on. Dream catcher took note.  In that subsequent dream, I was a race leader. Not the wheelchair division, either. On my bike, riding with the swiftness that could only have been a dream.

There is never a disappointment when I awaken to a different reality.  I lived the life of strong and accomplished movement. It is all relative and I still have a few moves. On a good day, I get out of bed without awakening Allison and asking for a nudge. My dream catcher observes. Exiting the bed with a bit of grace will be in my dreams someday. It will a pleasant memory.

A New Set of Wheels

Within the archives of male mythology there lives a notion that men spend most waking hours thinking only about two or three topics. One topic is cars. Not long ago, my master plan included a Dodge Pro-Master high-top work van. It would be diesel powered and have a very functional camper configuration. Most importantly, it would be stealthy and enable a bit of sleep almost anywhere. Time not spent in the Pro-Master would be in a Volkswagen Golf R. The R is an inconspicuous hatchback coupe with a 300 hp motor. Even the insurance company wouldn’t know the difference.

A fellow can dream, can’t he?

Attention density is a stubborn characteristic. Even with an accelerating understanding of ALS, I nurtured these car dreams. Multiple falls and the surrender of small dignities eventually built a case for new strategies. I do now have a van. Instead of a clever camper configuration it has a wheelchair lift.  But it is stealthy.  My need for speed is appeased by a power wheelchair having a top speed of 7 mph. It is simply a different contemplation of fast lane. I will probably affix an inconspicuous “R” name badge. Irony is the root of humor. I can still have some fun.

The need for mobility is resounding.  Perhaps it started with the Sunday drives of my childhood. Each week the family shared some ritualized windshield time. My father’s good intentions waning as three boys squabbled in the backseat. Mom lit up a Kent while imploring Dad to relax. And the next Sunday we all piled back into the Chevy wagon. Perhaps this was the precursor to screen time. Passive viewing of the mid-century landscape evolved into passive viewing of some crazy ass-hole in a YouTube video.  But Dad was better than YouTube. He would swear at lesser drivers, slow down to moo at small herds of cows, and allow us to throw small bits of litter out the window.  It was even fun when he would threaten to beat his restless backseat tribe.   His humor always returned when a dairy bar arose on the horizon.

I am thrilled when Allison is setting out for errands and invites me to come along. Loading and unloading is chore and Allison does it with grace and generosity. I have become the faithful dog, encoded with an entitlement to forever ride along.  I keep my head inside the car for the most part. And I’ve noticed that strangers are loathe to scratch my ears and comment on my good behavior while awaiting Allison’s return.

And then we drive away, and I gulp in the scenery like it is water and I am stranded in a desert. It is definitely about the journey and not the destination. After all, I have the ending figured out. Until then, it is all about wheels in motion. I can even re-imagine my ten-year old self rolling through the Pennsylvania country-side. An aggrieved voice from the front seat asking, “do you kids want me to pull this car over?” I imagine my forever reply, “No, Dad. Let’s keep rolling”.

Tool Time

 June 28, 2019  I was always all-in on tool acquisition, supported by a belief that good tools meant good work. The restoration and mastery of obscure hand tools reshaped my identity. Slicks, froes, and augers. Mallets made from tree trunks. Restoring a corner chisel with a blade as jagged as a cave man’s teeth. It was an endless cycle of search, acquire, and restore. Hours were spent crafting keen edges. More hours spent turning ash handles.

Fine tools fostered a deep, and at times, misplaced independence. They also provided a comfortable solitude.  Alone time became an easy habit. Old steel was quietly guided by kinesthetic wisdom. Visions born in quiet obsession guided resolute hands.

Last year this collection ended up in a box, sold to an earnest young fellow for modest dollars. His battered truck and the assurances of a good home sealed a sweet deal. Now I hire people.

With loss of tactile fluency words become the new tool set. But the forms of expression don’t have the restorable character of steel or wood.  Both writing and typing are soon slipping beyond the horizon. My voice is relatively clear but I notice slurring and I trip on certain letters.  This feels like a precursor to loss of speech. Now there is an urgency to maximize words while I can. I journal and blog.  Relationships have taken on new importance. There is a growing comfort in asking for things. (Allison has craftily noted that a sentence starting with “we” really means “you”. For example, “we need to take this garbage out.”)

I am aware that the river of words will turn rocky and then dessert dry.  The tool cycle will come full circle. Once again I will be in solitude, lost in thoughts and quiet obsessions. There is one significant difference. During the steel era, I escaped to my tools. In this new era, I will turn to the secure comfort of those around me. They will become tools by proxy. No need for keen edges. Love and understanding will do just fine.

Morning Stretch

June 5, 2019   I’m laid out on the cool floor, taking deep meditative breathes.  The river, just outback, is in early summer flow. It is just a trickle over mossy rocks. A restorative and time killing nap is a possibility. There are not a lot of options. The fall was sudden and I’m wriggling around checking for breaks and blood. An effort to rise creates a staccato beat of tremors in my left arm and leg. A moon landing is more likely than a kneeling position. I’m an industrial-sized sack of flower with a beating heart.

I hear downstairs neighbors moving about. My mobile phone rings from another room. Could they be curious about my crash? I go back to deep breathing and muscle relaxation. Slowly, very slowly, I push myself backwards, sliding along the floor.  It is really just something to do. Regardless of the endpoint, I’m not getting up. My intermediate concern is wrecking a new Syracuse University sweatshirt. These things aren’t cheap.

I have crossed an ALS divide.  For the first time, there is no workaround, no plan B.  Not a single quadrant of my body can contribute to the cause. Still, there is a mite of humor.  My underwear are relatively clean. I’ve had breakfast so not likely to starve. And the dogs demonstrate their worthlessness with a “nothing to see here” attitude. I need Lassie, not these worthless curs.

For the first time, reality replaces the hypothetical.  A cavalier attitude about handrails and medical alerts, is combined with an overall underestimation of all that can go wrong. And that list is pretty fucking long. I lie there on the floor scrolling through these considerations. The hopelessness of the situation sparks a proactive resolve. Isn’t that the normal reaction? We become encased in a predictably nasty situation before considering preventive measures.

These contemplations are interrupted by the sound of my name. Gary, my good friend and downstairs neighbor has arrived. He is a thoughtful problem solver.  Ethan, our 18-year-old also arrives on the scene. Together they get me to my feet, restore the elemental bond with my walker, and determine that all is right. With head and feet in proper alignment, I head for the refrigerator. It’s lunchtime.  All that other stuff can wait. Until next time.

Get A Grip

May 28, 2019   In the life of a boy, the age-span of 9 to 11 is the entry point to the ass-hole years. It is too early for self-reflection and too late for parental influence. The mind is developed enough to run the reward versus consequence algorithm. Threats no longer matter. Our posse understood this new calculus and applied a quiet and imaginative resolve to bad behaviors. Only our football coach could reign us in. Unlike normal suburban dad/coaches, Mr. Z was a man not to be messed with. A shift worker at Roebling Cable, he was unshaven, chain-smoking, and heavily accented. He smelled of factory air, raw-onions, and stale tobacco. We were simultaneously in awe and in terror. His coaching tool-kit included a ray-gun stare and strings of guttural threats. (It took us a while to interpret “vuchan yeshalls”.) We won most of our games.

On multiple occasions, I coached boys of this age. Words alone could assert control. Channeling Mr. Z, I developed the grip of death. A hard squeeze of a bicep or collarbone could divert a misbehavior. I was good at it, but recognize jail-time as a consequence for this practice today. More than one young adult has pointed me out to his own child recalling the legend of “the grip”.

Now I’ve lost my grip. Glasses are dropped. Scissors veer off course. Socks droop around my ankles. Driving is a mystery due to an uncertain grip on the steering wheel. Yesterday I tried to open a bottle of seltzer. By the time I found channel lock pliers a canned beer became a better choice. Allison comes home to a debris field. I can’t bend over either.

I’ve also lost my un-grip. This I discovered disembarking from the 6 Train at Union Sq. in Manhattan.  Closer to home, this means a bad release point while tossing apple cores towards the trashcan. There is an odd dance while undressing. Clothing remains in my grip while limbs flail, trying to facilitate an exit. Letting go is a problem.

But letting go is what this new life is all about. Ruing the past, and mourning the undoable only accrues sadness and anger. And who needs that shit? Change is simply a process and there’s always a transition zone between what was and what lies ahead.  Letting go buys the ticket to the transition zone. A bit of resolve, good humor, and a solid plan gets you to the future. It is no longer independent work. This requires a fierce grip on the people you love. There is no letting go of these loyal and loving shepherds.

Headlines

May 15, 2019   I know I am not alone in producing headline-ready narrative when confronted with physical crisis. For example, Canoeist Perishes in Idaho Whitewater. Or, Incoherent Hiker Found Wandering the Grand Canyon. Among the more plausible, Local Father Electrocuted During Illegal Home Repairs. You get the point. Our inner narrative can be distracting while exploring the dark cave of “in over my head”.

Yesterday, I was making the perilous journey from the kitchen counter to the kitchen island. The distance is about 2 inches greater than my wingspan. This means that part of the trip takes place without support. I immediately saw the headline, Peterborough Man Takes Final Step.  It is headline note-worthy only to me. Another passage, among many as my physical life reverses its arc.

At a seafood restaurant in Maine we observed a newborn. The room was lit by his smiles and tiny movements. We observed the opening passage of a long physical journey. We think of this as a forward progression but forget that it can also reverse.  Slowly the motor neurons can quit lighting up. Steps aren’t taken, forks aren’t lifted, and pages aren’t turned.

But the motor neurons allow a bright inner narrative. Insights are still conjured, kindnesses still noted, and spring still returns.  At times, it will be headline worthy. And as in times past, the headlines will have an audience of one. I’m no longer in over my head. But I’m alive with a rollicking inner-story.  The headlines will tell a different tale; of a man at peace.

The Pill Rodeo

May 2, 2019   Tuesday is pill day, the vexing 20 minutes when I wrangle dozens of meds into a clever little pillbox marked with days of the week. Much of my dexterity is gone. I see fingers resembling Vienna sausages picking up small pebbles and placing them in tiny little compartments. My mantra, “what else would I be doing?”

There are a lot of pills. First there is Riluzole, a treatment for ALS. It is widely acknowledged to do very little. The retail price is $2000 a month. It is a tiny pill that I sometimes drop. Our ever-lurking Labrador Retriever quickly gobbles it up. It doesn’t do anything for her either. I also take baclofen, the spaghetti pill. It’s a muscle relaxant that prevents spasms. It also prevents walking because your muscles turn into linguine. EH 301 is an anti-aging supplement that apparently reversed ALS for some guy in Portugal. It is a FYITT, (Fuck yeah, I’ll Try That).  There is also turmeric for inflammation. Unlike all the expensive shit, I am convinced it actually works. I throw in ibuprofen for chronic back aches and to knock down the pain from the most recent broken rib. And a statin for my bad heart. (Like that matters anymore.)

My neurologist, a learned guy and noted researcher, suggests a stew of meds, supplements, and diet. Nothing specific, it’s a biology project. I am both the experiment and the control group.  In the name of science, I’ve also thrown Lifesavers into my stew. Cherry, lime, and orange. I vary the order hoping for the big breakthrough. Expectations are tempered to say the least. But I never miss a dose.  As the great Gretzky once said, “you can’t score on the shot you don’t take”.