Blog

The alchemy of kindness

Recently, an event has tested my faith in compassion, empathy, and kindness as tools of reconciliation and healing. I will not go into details other than to say that it is perhaps the greatest challenge of my life, with impossibly high stakes.

Like most people, my initial reaction during particularly trying times runs to the “reaction” emotions of anger, fear, and despair as I struggle to control the hamster wheel looping of negative narrative possibilities that try to run 24/7 in my brain.

It is difficult beyond description to maintain detached responsiveness when 59-years of society’s encouraged inculturation of reaction acts as a well-intentioned centurion, guarding the higher functions of my mind in nature’s misguided physicality of instinct.

But being a higher primate comes with advantages as well as challenges, with the ability to reference experience perhaps our most valuable tools. I know that now more than ever is the perfect time for kindness.

Counter to what my “fight or flight” physical body tells me, deep in my soul, I know that the only available extrication from the spiraling horrors of impotent agony is to act counter to conventional wisdom, to operate opposite to what society urges as a “normal” response. The hell with normal.

So, I go downstairs to my weapon of compassion, my writing, fully aware that I am but one among billions struggling to survive life’s trials of omission. Being kind in the face of mortal attack offers the highest alchemical reaction, that of human empathy.

Today, with renewed emphasis of will, I will seek to help those encountering life’s brutal countenance of reason, soul quickened to the task of providing comfort to the faceless troubled reaction to existential pain.

Fortuitous circumstance–a PD update

Before my deep brain stimulation (DBS) surgery in 2014, despite significantly increased Parkinson’s symptoms, I was overall happy and at peace with life. I also had a deep-seated conviction that DBS would change everything, including my sense of spiritual well-being. Physical happiness trumped spiritual well-being, at least at this early stage, however. It was reassuring to know that DBS offered a relatively good chance of substantially improving my daily life, if only temporarily,

Now, seven years later, it is clear that Parkinson’s has overcome much of the positive influence of DBS, and monthly—if not weekly—disease progression is becoming more evident. The network of DBS brain wires still helps reduce some symptoms, and those symptoms that have returned are not identical to those experienced pre-DBS. Notably, DBS is still effective in mitigating the worst of my painful right-side dystonia.

On the other side of the ledger, my speech is arguably worse than before brain surgery. Unintelligible slurring is becoming more common by mid-morning, a challenging symptom to predict. I had forgotten the mini nightmare of a sound mind trapped in a body that could only produce the appearance of severe degradation. The required increase in my daily intake of Levodopa, which acts as artificial dopamine for a Parkinson’s patient, allows me to move but also causes the wild flailing and uncontrollable, painful writhing of dyskinesia.

Mornings are now the only reliable time for me to drive safely. My activities are limited by early afternoon to reading or watching movies for the most part, usually while fighting to break out of frustrating brain fog. By mid-afternoon, disease-induced fatigue, exacerbated by the morning battles and medication side effects, is overwhelming.

It is here when I am at my physically weakest and unable to think clearly, when anxiety’s gnawing horror rears up in psychological surprise attacks, that my situation borders on the untenable. It is disconcerting not being able to access the comfort of a deep breath. Having accepted the disease’s eventual outcome without reservation, it is the road getting there that can appear impossibly daunting.

Inevitably, when this happens—which is at least once most days—I remind myself to walk outside, to stare at a flower or spider web or the cloud-filled sky, in frightened silence until I can replenish that foundational part of me, the essence of my being, my soul. 

A foolishly giddy smile invariably crosses my lips when this happens as I revel in the cosmic joke, an improbable artifact of life’s guileless beauty. Unadorned by the brutal conveyances that surround, I reach a moment of surrender, laugh as my chest finally fills with breath, and marvel at life’s great circle of fortuitous circumstance, grateful for the day.

Ambushed

Ambushed

Four years ago, I was preparing to go to Guadalupe Island in Mexico to cage dive with the 400 plus Great White Sharks that congregate there from summer through mid-autumn. I did not realize it at the time, but it was my final organized diving adventure before hanging up my fins for good.

It was a 180-nautical mile boat ride from Ensenada, Mexico, to our anchorage at Guadalupe Island, where we would spend four days. It was a fantastic experience, more than living up to the hype it received in dive circles, particularly because of a viral video that burned up the internet a week before we left.

The video showed the “unlimited” cage at the boat’s stern, where divers and even snorkelers could jump in as often as they liked. The cage was secured to the dive boat’s stern from sunrise to sunset, just feet away from where a crewmember was throwing hunks of roped frozen tuna into the water to lure the magnificent beasts closer for dramatic photo ops.

The video caught our attention. It showed a stout, six-foot shark shoot out of the water and land in the opening at the top of the unlimited cage, trapping two divers. Divers eventually enticed the shark out of the cage, freeing the divers before disaster struck in the cramped quarters.

The trip was a resounding success, but one fantastic encounter surpassed all. I was in the starboard cage (in addition to the stern cage, there were also diving cages at the boat’s starboard and port sides), gazing into the transient nothingness at 30-feet when my vision was startled into focus by an unseen sense of implausible energy approaching from the depths. Preceded by a bow wave of rippling water, the shark appeared as if conjured up by an illusionist’s trick, hurtling perfectly upward, deviating not a degree from pure vertical.

The Great White moved so quickly, fully committed with no sense of reservation, that it was difficult to track. Each slight flutter of its tail fin propelled the ton of rough-skinned behemoth faster as it accelerated for the final 50 feet of the attack.

No doubt or hope or thought of future or past dimmed the Great White’s sense of purpose as it ambushed its prey as nature’s perfect creation. The shark broke the surface in a plume of whitewater before vanishing, never to be seen by me again.

The scene lulled me into a feeling of peace, the remnants of the Great White’s attack hanging heavily, slowly decompressing in my silent mind and soul. Witnessing nature in its most uncontaminated state, I stared into the enduring water ahead until vision dissipated in obscurity, thankful for this final gift from the depths.

Farewell, old friend…

Aging is a constant cycle of releasing: letting go of those things closest to you in the recognition that, ultimately, “things” are unimportant. Thus far, letting go of “things” as my Parkinson’s disease progresses has been easy for me. Flashy cars and ostentatious homes never held value in my heart, and we successfully avoided their trap into a superficial vision of the world.

There may be an exception, however: our boat, “Sea Hunt.” I staged almost all my boating adventures from the Deception Pass Marina, home to a Hunt boat continuously for the past thirty years. I met some of my best friends on the marina’s creaky docks.

Soon after picking up Sea Hunt in 2006, my wife, two children—ages eight and twelve at the time—and I struck out on the 180-mile journey to Desolation Sound. Over the years, we took multiple family trips to Hotham Sound, Princess Louisa Inlet, Victoria, and the Gulf Islands, as well as countless local San Juan Island visits.

We made hundreds of dives in the off-season from Sea Hunt, many in Deception Pass. The family would return to the boat when summer arrived for crabbing and socializing with boating friends.

Sea Hunt found the Lost Intruder, an A-6 Attack jet that I had personally flown. It crashed in Rosario Strait in 1989, but the Navy—despite the use of four ships and state-of-the-art search equipment—could never locate the wreckage.

For over a decade, the beat-up 32-foot “motor yacht” (the official Model name) was probably the most used boat in Coronet Bay. Midnight runs with half the marina aboard were common, battling the swift currents in tiny Canoe Pass at night, occasionally going through backwards. We put the 1987 Bayliner through the wringer, adding 2,200 hours to each diesel engine.

With do-it-yourself maintenance becoming problematic and the boat increasingly less comfortable for me, the time has come. Sea Hunt is the sole “thing” that I will truly miss from my life.

This morning, to prepare the boat for sale, I took down my AARP card collection from where the fifty or so cards had accumulated above the helm. Why AARP cards? If you refuse to join, the AARP keeps on sending them. It was my version of giving a not-so-subtle middle finger to aging.

Maybe the AARP got the last laugh, after all, I consider, smiling broadly, shake my head, and marvel, “Ain’t life grand?”

Watching the garbage truck

Watching a garbage truck perform its job has, strangely, piqued my interest since I was a little boy—something about people partaking in mundane daily activity while the magic of Spiritis Mundi, ignored, patiently waits in the wings.

As a pre-school child, it was a rare glimpse of a member of society doing their job within sight of the living room window. That urge to watch the weekly trash pick-up is still with me, likely at least in part for the same reasons as a kid. I’ve always felt like an outsider to our world, only to briefly enter society’s machinations for a specific reason.

Sitting at my desk, I hear the rumble of truck tires and braking, so I stop what I’m doing and stare at the green can at the bottom of the driveway. The automated truck halts abruptly abeam our refuse, extending its mechanical arm, effortlessly upending a week’s worth of all we no longer find useful.

How amazing the human mind is to design and build this single-purpose vehicle, the same evolved brain that creates inventions of horrific destruction parallel to those that advance humanity’s most altruistic inclinations. At times, to live in this world seems to be the height of insanity, a blood-dimmed tide loosed in ceremonial damnation.

My mind travels in memory, and I gaze beyond the scum line of brackish water in a small cove, the defining frontier between the open sea and the outflow of a fresh-water marsh, both existing blank and pitiless as the sun.

It makes me wonder what it takes to achieve lasting equilibrium between mind and soul, to hear and heed the falconer before things fall apart. How to maintain vitality in both Augustine’s “City of God” and “City of Man?”

I bow to society’s dictums, indignant as a desert bird, slowly pacing down the concrete driveway to retrieve the empty garbage can.

Stop.

Catch reeling thoughts.

Bards battle for unbidden grace, “And what rough beast, its hour come round at last, slouches toward Bethlehem to be born?” 

I break free from the gyring nightmare, my inner voice a fountain of fortitude: “…and miles to go before I sleep…and miles to go before I sleep.”

(Apologies to WB Yeats and Robert Frost)

Liberation

One complicated concept for outsiders to grasp about Parkinson’s Disease (PD) is that of “on” and “off” times, the indications of whether medications are in balance with the disorder. If one has been dealing with PD for any significant amount of time, say seven or eight years, disease symptoms—both physical and psychological—abruptly reverse course several times throughout the day while cycling through medication balance.

Matching medication to symptoms becomes an increasingly impossible task, as a greater dosage must be taken for the same effect over time, narrowing the window of “on” time until it disappears altogether.

There is a saving grace to this downward arc, however: when I’m so severely “off” that it becomes impossible to hide symptoms, then Parkinson’s evolves into a liberation of the soul, as if I had been living a lie, but am now free to relax a bit and let the limbs flail where they may.

When I let Parkinson’s flow through me without resistance, it becomes easier to ignore the looks of those who think I am drunk or high or just weird (the last observation is accurate, as it turns out, but that has little to do with Parkinson’s).

Uncontrollable symptoms demand that I be my genuine physical self, a not-so-gentle reminder of the free-wheeling joy that comes from living authentically, not subject to society’s pressured superficialities.

So, if you run into the “off” me, please know that life is good, whatever the look on my face. I’m just being my authentic self.

Groceries

I feel it thick in her overly casual glance in my direction. She’s worked at the store for long enough that she probably remembers my last descent, my first Parkinson’s stumble into the abyss, but the reality is that I have no idea whether she has a clue about my story.

I carefully unload the shopping cart onto the checkout conveyer belt, taking great care not to break anything. Ambushed by a wave of familiar emotion, I twist an already overworked expression into an unbalanced confusion of pain, frustration, anger, and resigned determination.

“The hell with it,” I slur silently, working jaw and lips in an unnatural curl on the right side of my face, inadvertently lending authenticating detail to the drunken meth head reflected in the strangers’ eyes that hem me in. Concentrate on getting through the parking lot to the car without dropping anything; focus.

I struggle to contain the writhing that wracks my body from head to toe. The car starts. As I concentrate on holding the steering wheel with my relatively calm left hand, I attempt to gauge my driving abilities accurately.

I don’t know.

The car seems to be tracking steadily forward despite the violent jerks and twists of limbs that catch my attention in the mirror. As near as I can tell, I’m good to go.

The attack is unrelenting, exhausting, yet boringly familiar, I realize as the car reaches the top of the last hill before getting home, the spot where I wrote that poem seven years ago before brain surgery. The end of the poem begins to auto-recite in my voice:

“In timeless cacophony’s wisdom,
The test runs its course and subsides,
Sudden end to intensity’s shudder,
Quell urgent desires to die,”

“The battle won with the knowledge,
That unwinnable war lies ahead,
With ease forget the last hour,
And marvel at life as it’s led,”

“It’s just a few portions in hours,
Spread even throughout the day,
Not worthy of long-term attention,
A bump in the road on the way.”

I turn in the driver’s seat, body lining up square with the road ahead as an honest smile of earned grace crosses my lips:

“The hell with it,” I beam; life is good, the hell with it.

Round two (or was that 200?)

Life sometimes travels in circles, compelling us to confront similar challenges over and over. Maybe the core problem with breaking free from these recurring themes is that the goal—whether consciously or unconsciously considered—has not been met; perhaps the necessary life lesson has not yet been experienced.

Parkinson’s progression serves as a good example. Even before successful Deep Brain Stimulation (DBS) surgery, I knew that my increased capabilities would be temporary, waiting for who knows what to ignite the progressive nature of my disease once again.

It has begun. Parkinson’s has shrugged off the positive impact of DBS and is back to dragging me in a familiar direction, back to that feeling of an immobile, isolated helplessness. So, where is my power?

The medical bag of tricks is empty, with more medication the only option is to salvage a few scattered hours of reasonably stable mind and body from the day, for now. Old lessons are relearned, tactics are refurbished for nuanced differences. I prepare myself for the inevitable.

And here lies my power: the acceptance of what is to come in all its twisted beauty. I am not my body or my mind. Ultimately, I am all that I need. At the core of my being, smiling at life in all its colors of deceit, I am. Come and get me.

Serving up ritual

We all develop habit patterns that make a routine out of potentially uncomfortable tasks. One of my habits is to get up early—usually between 4:00 and 5:00 am—let the dogs out, feed them, and then bring coffee to my wife.

I had just sat down on the front porch to watch the sunrise when a distant baying permeated the northwest quadrant of my senses, a banshee-like screeching in unison that spoke to an innate wildness. Coyotes.

For those who have not heard coyotes before, they can sound disturbingly human. At first, these feral canines promote the imagery of dozens of dispossessed souls howling at first light, unable to go home. But with patient understanding, my vision of them softens to a child’s unrestrained romp of wilderness-play, of an unrefined version of the grace within ourselves that laments and celebrates life’s most intense illusions.

The auditory theater shook me from the comforting stupor of morning ritual, inviting me to both tune in and tune out in silent wonder. For a moment, I had no thoughts, only a deep awareness of being with nature. What a day to be alive.

Radical acceptance.

I recently learned from a friend of a term that gave a label to a concept I had been practicing for the last fifteen years: radical acceptance. The definition is, in short: when one stops fighting the reality of the day, letting go of bitterness and its cycle of suffering.

For me, Parkinson’s disease guided me to the concept. I fully accepted early that Parkinson’s was incurable, it would affect me both physically and psychologically, and it would get progressively worse until I died. For some reason, it was just that simple for me. There is no reliable timeline associated with Parkinson’s to help prepare for when these changes will occur, making my fluid adaptation more surprising.

Parkinson’s impacts everyone differently, and there is a wide range of symptoms that can manifest, leaving one never quite sure what precisely they are accepting. The future becomes murky at best.

The bottom line is that radical acceptance works, at least it has for me. It doesn’t ask you to be happy, sad, or mad about the situation. It only requires that you accept life’s current reality. In doing so, one can avoid the most damaging pitfalls, such as considering yourself a victim and wallowing in self-pity. Sure, everyone has bad days and feels sorry for themselves for a while, but radical acceptance can help make those feelings fleeting.

Radical acceptance does not relieve suffering, but it allows one to move past the suffering treadmill as a defining aspect of life. It provides breathing room for a situation where there are no good options. The effect is that you can accept what “is” as what is, suddenly making a life under the shadow of debilitation—or any potentially difficult situation—a wonderful thing.

Deep into my 17th year since PD diagnosis, I strongly recommend radical acceptance as a beginning point to learning to live fulfilled while suffering. It need not supplant any beliefs you currently practice: it is likely to be in your spiritual or religious belief system in some fashion already. Try it—what do you have to lose?