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”.

A Realization

April 26, 2019  At some point, all men have the, “oh my God, I’m becoming just like my father” experience. This was always a reach for me as my dad was a handsome, assertive, gregarious, big-boned fella. He brimmed with confidence and thrived on the attention that he catalyzed. Compared to me, a real stretch on all counts.

Dad lived to 90 and his last couple years were not easy for those around him. He was an only child and the product of the male-centric 40s and 50s. Demanding shit was simply a cultural reflex, as natural as breathing. And it seemingly occurred as often. I was frequently the demandee.

It was tough to observe his physical decline. He became both skeletal and bloated at the same time. Rapid movement was never his forte. But now, in decline, every movement became ponderous.  As his reluctant hand servant, my patience was tested. Inner dialog skewed towards: “Damn, I don’t have all day”. “Com’n lift your feet”. “Geez, you can’t open a storm window?”

And justice is served once again. Now I’m the human glacier. Muscles recede and bones become prominent. Feet swell and take on strange hues.  It is easier to shiver then get to my feet and close a window.  I’m light on the spiritual divide but awake to the possibilities of divine retribution. What goes around, comes around. It feels like a flock of crows pecking at my unworthy soul.  I could have been nicer.

Yeah, I’ve evolved. At 66 years old I’m comparable to my father at 90. Turning into my dad is not all bad. He maintained his high good humor. And he was courageous in confronting endings. His rearview mirror focused on a life lived well. There was nothing but high notes.  He was always optimistic while assessing his covey of very average children. We were viewed through a prism of notable achievement.  And he loved his wife, our mother, dearly and without reservation. He used this anchor point to navigate painful currents. And most of all, no regrets.

Alright then, turning into my dad might just work out. Ultimately, he was simply a nice guy – the bringer of jokes, the provider of a good word, and completely in love with those around him. Perhaps I can flip the script. It is not too late to navigate by the compass points of grace, kindness, optimism, and humor. I might even learn to ask for a little help.

Walkin’

Jan. 28, 2019  In baseball, I was the walk master, a profane runt with an oversized uniform held up with safety pins. The coach’s pack of Chesterfields was larger than my strike zone. My strategy was simple. Grip the oversized Eddie Matthews bat, crouch down and wait for the inevitable walk. My teammates would be chanting, “walks as good as it hit, walks as good as it hit”. The opposition would scream, “Swing batter batter, batter, batter, batter. Swing batterbatterbatterbatter”. They got into it. I once heard an opposing coach say “swing the fucking bat”. I didn’t care. A free pass got me on base where I could antagonize all the infielders as I scuffled around to eventually score.

I started walking sometime in 1953. My mother was understated with the accolades. There weren’t miniature caps, gowns and Instagrams in those days. Mom realized that my mobility was not a good thing for her household.

I walked everywhere. We lived on a looping drive. Neighbors were visited on a candy begging route. There was a small commerce strip nearby. By six years old I was nicking quarters and heading over to the Mario’s Bakery for crème doughnuts.   At 4:00 one morning, I walked to the A&P store and stole a watermelon from the pile kept outside.  Just a 10-year-old lugging a stolen melon in the dawning of the day.

I ran away at eleven. Actually, I walked away. With my mom’s oversight, I loaded a small suitcase with some socks. I walked into the woods, sat on the suitcase and waited to be retrieved. Darkness arrived and I walked home. There was no warm welcome.

I walked to Trenton, New Jersey to buy a pair of Converse All-Stars when I was twelve. Ten miles round-trip through neighborhoods where you only dared look at the gum stuck to the sidewalk. Why ask permission when you can just give yourself a free pass?

Life has been defined by great walks. I walked the Grand Canyon to the Colorado River four times. I walked down the aisle with Allison and I would do it again every day. On a frigid January weekend, I walked up Mount Jefferson with my friend Tim. The ice was thick and blue, dotted with scarlet bits of moss. We used crampons and ice axes for grip and stability. Walking on steep ice was the most improbable and liberating experience of my life.

When my car wouldn’t start I walked. When I was troubled or angry I walked. When snow fell like a hissing blanket I walked. I walked with backpacks, suitcases, and torn shopping bags. I once walked a mile across a sagebrush flat with three 10 foot sections of drilling rod on my shoulder. Gnats bombed my face and filled my ears and nostrils. I never put that hot iron down.

I’m walking less. And it’s not really walking. It’s a hybrid, clawing at chairs and countertops; leaning on walls; and holding on for dear life.  I refer to my walker as “the trusty steed”, like I’m the fucking Lone Ranger.  Others have a three drink limit. I have a three step limit. Assistance is needed beyond that. Within four weeks it will be zero steps. I just know these things. But I have walked enough and seen enough to have little regret. I’m kinda glad I never swung at the pitch. A walk’s as good as a hit.

Dogs and Baseball Heroes Die Too Soon

Nov. 28, 2018  My older brother, normally mean-spirited in the older sibling sort of way, once let me wear his Milwaukee Braves hat. In the style of the day, it had baseball cards stiffening the crown. The bill was folded into a box-like configuration. The older brother wasn’t much of a ballplayer but was particular about style. For a seven-year-old boy, living in a world where baseball was the one and only king, I had an immediate affiliation with the Braves. The wearing of the hat connected me to the world of Spahn, Aaron, Mathews, and Adcock.

Back then, baseball danced across three mediums, radio, television, and imagination. And within our family’s modest lifestyle, television was notably bad. Still, powerful memories formed. Maz circling the bases after hitting the home run that beat the Yankees in 1960. Willie McCovey coming oh-so-close to beating the hated Yankees in the 1962 series. Even in defeat, McCovey was an early hero. Perhaps it was the nickname, “Stretch”. It helped that he also hit a lot of home runs and was generally pictured with Willie Mays. It seemed as though nicknames of this era inspired a level of sub-visual stickiness. You can visualize “Stretch”, “Hammerin’ Hank”, or “Stan the Man”. These pictures were plausible pieces of real estate in a kid’s mind.

In the realm of heroes, much of the messaging was locally controlled. Our knowledge was built from baseball cards, box scores from The Trenton Times, and the arguments of young boys. Celebrity dating, growth hormones, contract disputes, and advanced statistics were not part of the conversation. Our love was pure. There was nothing that could over-ride our imagery.

In life, reality and imagination never really square. The actuarial tables rule with an iron fist and ballplayers age and pass. And so, Willie “Stretch” McCovey died this week. This ignites a contemplation. Is it the passing of the person or the reconnection to the long-dormant memory that force the pause? Perhaps I block the memories of my pre-ALS self. There was a time when I ran, caught, threw, and hit. And in my eleven-year-old mind, I could scoop the low throw just like Stretch McCovey. But I could never hit the long ball. That was the province of heroes. Nov. 1, 2018

“God Bless You”, Sayeth the Agnostic

Oct 13, 2018   The issue of faith has never occupied much mind share, so I guess that makes me faith-agnostic. There was a period of explorations. I tried to engage our hippie youth minister. He seemed more drawn to other teens, the ones with unruly braided hair, frayed bell-bottoms, and strident views about Viet Nam.  I had a collection stoner friends.  We would debate the issue while checking out girls at the beach. (I was a dedicated beer guy, not a stoner.) It was 1969. This discussion co-mingled with the Mets chasing the Cubs and girls not shaving their legs.

The decades pass and I have rumbled along without many contemplations of faith. I recognize the importance of faith to many and am somewhat envious. I’ve even attended a couple of Catholic masses with Allison. The warmth and togetherness was compelling as were the many Catholic rituals. But for me, the foundational piece was missing. Questions were unanswered and evidence was unconvincing.

And now on my journey, I have arrived in Kearney, Nebraska, the exact center of an imaginary string stretching from Boston to San Francisco. It is the heart of the heartland and Nebraskans take issues of the heart very seriously. If you can ignore the wind, this is the place to hobble the landscape with a disability. There is unimaginable kindness and awareness that cuts across all demographics. In Omaha, a Muslim woman in a hajib put down her infant to pick up my cane.  In Grand Island, a burly farm guy moves his mud-spattered truck. He did the calculus and knew my door wouldn’t open enough. The helping hand is always extended. Doors are opened, rental cars delivered, unruly collars adjusted, coffee and cake magically appear. It is a pervasive thoughtfulness that has attained the status of “a blessing”.

Perhaps I got into this spirit. In thanks to the kindness of a shuttle driver I blurted a “God bless you”. The world didn’t stop spinning but I paused in contemplation. “Did I just say that?” And this renews the conversation of faith. Is it hypercritical or unfair to toss around the blessing without having done all of the Christian work? And if God exists, what would he think? Is there a rulebook guiding these behaviors? Faith apparently comes in many flavors and we get to decide. But ultimately, if we receive the blessing of kindness we should have faith in the goodness of humanity. Oct. 13, 2018

Hey, Let Me In

Oct. 11, 2018  Who the hell thinks twice about doorways, those planks of steel, wood, or glass that open in front of us and then seal us off from whatever it is we’ve left behind? Anthropologically, doorways represented safety, barriers to beasts and being intent on harm. Spiritually, Doorways also represent passages, the movement from one state of being to another. Setting all that aside, I have a fucking complaint about doorways. They are designed for the able-bodied. The physics of turning the knob or pushing a bar and then overcoming the weighted inertia of a hinged barrier is largely taken for granted – unless you have destabilized to the point that you are tossed aside by a fair breeze.

Nowhere is this challenge more pronounced than in hotels. Doors are designed as barriers to thugs, fire, and disabled guests. Start with weight. Doors are steel, perhaps concrete filled and hinged to close swiftly and firmly. And they have massive hydraulic closers. Let the Commies drop the big one. You’re safe in the Marriott Courtyard.

Here is the drill. I drop all the shit that I’m carrying and use my dysfunctional hand to insert the key card and hope the various little lights blink green. I slowly turn the densely weighted handle, and lean hard. With luck, I’m halfway in. I quickly toss the key into the room to sustain forward progress. Both hands are needed to deal with all that stuff that I set down during process step number one. With ass wedged against the door, I lean down, grab bags and toss them into the room. But the nasty secret of doors is that back-swing is the true enemy. By now the 300-pound door has ejected me back into the hallway. The key is in the room. Fortunately, I have the walker and can go back to the lobby for another key.

Being in the lobby confers small entitlements. Rewarded with a large box of M&Ms and Strawberry Pop-Tarts, I cycle back to the room and go through the process once more. Door open. Back in with the walker. I wonder; will the door crush the walker as it closes? Lost in this concern, I trip over that bag tossed in thirty minutes earlier. At least I am in the room. And there are no witnesses. Relatively speaking, it’s all pretty good.

And I am in a well-appointed room with unlimited BTUs. I can be warm, safe, and comfortable. I can go to bed as early as I like. And I have a box of M&Ms. I busy myself with small tasks until a decent bedtime hour arrives.  8 o’clock is rest time. I Lay my head on the pillow, offer my nightly incantations to my beloved Allison and journey into the restful fog.

I awake with a start. The room is way too bright. The door is ringed with light. I’m talking “my Lord Jesus is comin’ for me” light. How is such a powerful barrier to people so poorly sealed to light? Fortunately, there are six pillows on the bed and I only need one. I use five pillows, three towels, and a down vest to knock down this crazy light. The effort interrupts my sleep to the extent that I now waste part of the evening writing this foolish blog.

But I don’t have large regrets. I choose this journey and put myself out there to do work that I love. Doorways represent challenge, a small test for a guy that used to run mountains and swim lakes. Someday soon, when I’m confined to small spaces there will be a light remembrance of landing on my ass in room 306 at the Courtyard in Lincoln Nebraska. It will bring a smile.