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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?

Dawn

Dawn’s ray tickles sentience, warming animation to being, heralding the day’s welcome home. The tapered beam flickers, defining form, before merging with the infinite wave.

Watch the birds twirl from limb to wire and back again, dancing to love’s grace. Listen. Feel. Live.

Freedom

First, I wanted happiness, permanent and sincere, a glimmering fantasy from an ivory tower of perceived wholeness.

Then, I wanted peace, to be at ease with some unnamed demon yet to emerge from my shadow.

Now, the image forms absent the brambles of reason, that creator of illusory confusion: Freedom from attachment; ultimately, freedom from myself.

Breakwater

Breakwater

As a young lad, I felt compelled to “run the jetty” whenever I came across a breakwater. No matter where I was—New York, Massachusetts, or Greece—if there was a jetty of giant cluttered boulders jutting out into the open ocean, it called on me to take its silent challenge.

Approaching the jig-saw strewn boulders with eyes down, I chose to take each step as it came, an immediate decision requiring perfect foot placement and balance if I was to avoid a bone-breaking spill. During summers, I’d often run the jetty barefoot, limiting my choice of stepping-stones further by disqualifying any rocks that appeared to have sharp edges.

Depending on my mood, I might attack the breakwater, sprint-jumping step-to-step, events moving too quickly to think as I searched for the following landing site for my foot even before planting the first leg. To be successful at this game required an absolute faith that a suitable target would appear, often at the last possible instant. And it always did.

Other times, my stride would be a slower, rhythmic gallop, but either way, the play demanded deciding foot placement in a flash from moment to moment. No matter my style, my unspoken goal was to push aside the continuous loop of stories that ran through my head, stop thinking, rest my brain, and allow imagination room to breathe. Running the jetty always did the trick.

Reaching the jetty’s end, breathless with heart-pounding and leg muscles burning in short-term exhaustion, I would briefly rest while gazing out at the open ocean in its various moods. All was possible; all was ahead of me. Except for the jetty—that was now.

I was to have other moments of intense concentration in my life that achieved the same goal, mostly while flying or diving. Despite extreme and often dangerous circumstances, each one presented the same intervals of peace from the mind’s constant chatter.

It is only now, no longer physically up for past tests, that I look within for that same quality of peaceful acquiesce. Of course, it takes far longer to achieve a lesser result, but it is there. Such is life.

Still, an image of a jetty in my mind’s eye inspires a familiar, reassuring longing; a welcome friend returned from the shadows to help usher me home in timeless unity.