Humility’s gentle grace

My life—until recent years—mimics a pendulum’s widening arc of extremity, hinting only the slightest hesitation as the center oscillates past quiet with confounding predictability.

Recognizing prior patterns of hollow value does not magically charm foibles into fables, and perception alone only summons the rigid reward of hardened belief. Authentic humility’s hushed wisdom is what opens the door.

Tutoring conviction elicits the mind-as-tool prison, lending it unbalanced weight while ignoring the heart’s treasure of softening judgment. Humility’s charity balances both, vanquishing neither.

The metaphor is incomplete, as are all portraits of the soul, an entity aching to be seen, patiently awaiting the pendulum to swing toward humility’s gentle grace.

Part Three: Parkinson’s helped resuscitate my soul.

“The Lost Intruder, the Search for a Missing Navy Jet” is largely about shedding old identities, which allowed me to create fresh characteristics and behaviors based on who I wanted to be. Wiping my identity slate clean was daunting. But merely existing without the foundation of an internalized self-portrait, as I did for some time after Parkinson’s Deep Brain Stimulation surgery, was profoundly disturbing, especially while trying to avoid being defined by the outside world.

Working through the emptiness, I experienced honest, unfiltered emotions for the first time in decades. Not since childhood had I felt such stinging gut reactions, real-time feedback that inspired serious reflection on what was important in life.

The solitary time spent on the water combing the ocean bottom encouraged introspection, and with my mind temporarily free of a lifetime of knowledge, logic, and reason, a pair of feelings filled the void: kindness and love. It became evident to me that nothing else mattered, that all man’s rantings and ravings served as distractions from our true nature. I didn’t choose a new identity; it chose me.

Science and technology, man’s tools of understanding, can answer complicated, practical questions, but only human insight—a soulful exploration of the essence of things—can shed light on why we exist and suggest how we might act to realize happiness. To disregard one as trivial is to risk losing the whole point of life.

I have no answers. I do, however, acknowledge my feelings as the most essential part of me, and kindness and love make me feel good. And after all, isn’t that what we are ultimately striving for as we embark on mindless quests for power, money, and fame? To simply feel good about ourselves?

#peterhuntbooks #thelostintruder #livingwithparkinson’s #dbssurgery

Part One: Living with Parkinson’s Disease after Deep Brain Stimulus (DBS) surgery.

Now in my 14th year since Parkinson’s Disease (PD) diagnosis at age 43, life is more vibrant than ever in physical activity and meaningful social engagement, offering up moments of rewarding personal reflection. Although not diagnosed in “old” age, it seems that PD has lured me to an enjoyment, a trust, in the process of life that, ironically, might lay the foundation for a sense of peace through advancing years and into death.

My 2014 Deep Brain Stimulation surgery (DBS) set back the PD-symptoms clock a good number of years, allowing me to reconcile the harsh physical effects of pre-surgery Parkinson’s with innate happiness. At that point in my life, I needed a fierce battle to help eradicate my previous identity, wiping the slate clean of many harmful societal expectations and preconceived notions along with any unhelpful longings for the past and future. Only then was I able to start the process of developing into the person that I truly wanted to be.

My latest book, “The Lost intruder, the Search for a Missing Navy Jet,” describes in detail my pre and post-DBS surgery challenges with Parkinson’s—as well as the DBS procedure itself—and the fundamental re-writing of my identity. The story is not a reductionist laundry list of tactics for facing down PD. It is about a revitalization of individuality, of setting the initial course of character for the voyage to becoming who I want to be. As with life, the journey is not always comfortable or pain-free. Nor is it a sure thing. But the passage is well worth the effort; it might be all in life that ultimately means anything.

My personal exploration continues here. Won’t you join me?

#thelostintruder #dbssurgery #livingwithparkinsonsdisease

On report

It’s been one and a half years since the batteries implanted in my chest were turned on, and new electrical pulses began firing in both sides of my brain, ameliorating the worst of my Parkinson’s physical symptoms. It has been both as I had hoped and feared: the sense of transcendental self-awareness has largely dissolved into memory while my mobility and physical comfort are much improved.

Was it a deal with the devil? Not really, I’m not convinced that the gains and losses are inextricably linked, but there does seem to be a tightly bonded exchange of the two; quid pro quo. Is it insurmountable? I don’t think so; I don’t know.

A pall of apathy guards my mind, seeping and sealing brief breaks of initiative in its walled defense, discriminating in the sentry’s challenge, allowing stealthy passage for depression’s silent horde, only to be repelled again and again by the weary keep.

Parkinson’s quiet siege relies on a triumvirate of sneaky partners in its patiently gradual erosion of battlements: apathy, low energy, mild psychosis, the three working in concert, rolling the giant horse past the mind’s defenses to release depression’s miasma within.

I know this; everyone connected closely to Parkinson’s knows this on some level. But it’s so easy to let that horse keep rolling, its building momentum welcomed for its power and repelled for its substance.

It is tiring being tired; excited for life but cursed to stand by as a watcher, non-engaged and frustratingly boiling in a stillness of indecision. This is where I am.

But that is not to say it is where I will be. If allowed, I see signs of improvement, of engagement, of being normal all around. I can reach out and touch them.

And sometimes I do, and the victory is blindingly abundant in reward; and just as quickly, it is forgotten. That is why I am writing this; to help me remember, to keep focus, and to act.

I know I can do it. Sometimes it pays to put yourself on report so that others might know it too. And now you do.


The “all of us”

Two days ago, I had four medical appointments at Swedish Hospital, the location of my Deep Brain Stimulation surgery in Seattle last November. It was beyond strange to return after two months of no visits, and I found myself fighting various demons of distraction.

In order, the appointments were with my primary neurologist, an MD sleep specialist, the Nurse Practitioner who adjusts my pulse-generator batteries to optimize performance for my Parkinson’s symptoms, and the final appointment was with the surgeon who performed the two procedures.

Sleep is still an issue, but it is vastly improved compared to before the surgeries. I still have a sensation of dyskinesia in the pit of my stomach that awakens me after several hours and requires that I stand up and walk. I might not fall asleep for hours when this occurs, but when I lie down, it is comfortable, the bed is soft, and there is no pain. Still, why not try a sleep specialist; day time fatigue can quickly morph into depression, and it makes it more difficult to counter Parkinson’s rigidity.

The real challenge I face is of memory and transcendence to not only understand the lessons learned in the past few years, but to incorporate them into my much improved physical life as well. Easier said than done. It is shocking how quickly we can forget even the most valuable lessons.

How to fight this, how to push back at this totally expected and anticipated challenge? So far, I can’t say I know the answer, which is in part why I’m writing. My greatest post-surgery fear is of what I’ve come to consider the “threat of the mundane.”

I don’t feel like I’m failing yet, but it certainly doesn’t feel like I’m winning either. The challenge ultimately may have less to do with Parkinson’s, and more to do with life in general. How do I ensure that I’m living the “examined life,” of Socrates, the life active in mind and body, a full life?

I don’t know. It’s an easy proposition on paper, but the seduction of a soft bed, ample food, and no sense of urgency make it difficult in reality. Looking at it in a different way, maybe the surplus of plenty is to the West what the “oil curse” is to the Middle East, and we can all see how well that’s playing out.

Parkinson’s has taught me to keep moving, seek out and accept challenge, and take control of my life. Now, after the surgeries, I consider myself less afflicted by Parkinson’s, and in some ways “Parkinson’s free,” which is nonsense—I realize that it is my destiny to travel down the same spiraling path interrupted by surgery sometime in the future.

It is incredibly tempting to slouch back into old routines and habits. How do I get around this? How do any of us do so? My gut tells me that the answer lies in grit, in perseverance, and I know it is right.

I will be fine and figure it out; just wanted to share, now that I’ve got a problem that is likely common for all of us—how to get the most out of life.

It’s good to back with the “all of us.”

A new day

The progression of Parkinson’s is similar to the concept of “boiling a frog”: life’s natural coping mechanism—time—tends to mask the true weight of the illness from the afflicted. Now imagine if the emotional distortion of time did not exist; what if one could instantaneously transit the full range of Parkinson’s most debilitating symptoms accumulated over a decade, and then with a literal push of a button set back the clock ten or more years with almost no indication of having the disease?

This is not only possible, but it becomes the extant reality for thousands of patients with Parkinson’s and other neurological disorders who undergo successful Deep Brain Stimulation (DBS) surgery. I am now one of them.

The past six weeks have been an emotional, intellectual, and spiritual rollercoaster that defies description. In the simplest terms, I have experienced every degree of capability and every symptom of Parkinson’s accrued over ten long years during the thirty days following brain surgery. But that’s not all: at the end of this rollercoaster is a button that allows the actual disease to vanish or return instantly when pushed.

Please let me explain. DBS consists minimally of two surgeries: the first is brain surgery to implant two wire leads deep within the brain. The patient is awake during this three hour procedure so that the proper placement can be assured by judging the relief of symptoms when a small amount of test current is applied. It is, shall we say, “uncomfortable,” but it goes by incredibly quickly.

The patient spends one night in the neurological intensive care unit with some people who are truly hurting, and then is discharged the next morning if recovering well. The ICU stay alone is worthwhile: it is a humbling opportunity to readjusts one’s perspective.

The second surgery occurs six days later. The wire leads left from the first surgery coiled under the scalp are unwound, and then run beneath the skin in the neck and torso to two pulse generating batteries (each 2” across) implanted below the clavicles. This one was a bit more painful, but when considering that it was the second major surgery in less than a week, not too bad. I was back home twelve hours after leaving, and that includes the 2.5 hour drive each direction.

I slept in a chair for about a week. The four incisions, which have yet to fully heal, make feather pillows feel like they are sharp, dry clay.

Immediately following the brain surgery, I experienced the “honeymoon effect,” and for about four days did not show any Parkinson’s symptoms whatsoever. The symptoms slowly came back, and within weeks I had transited the entirety of the disease’s effects since diagnosis.

It was a “Flowers for Algernon” period, physical disorienting and mentally confusing. For a time, I had great difficulty not in knowing who I was, but in knowing how I was.

Five weeks after the first surgery, I returned to the hospital to turn on the pulse generators and begin to optimize the various electrical parameters to deal most effectively with the most egregious symptoms.

I had stopped taking my medications twelve hours earlier to provide a realistic template for the implants, and I could only walk into the hospital with the aid of crutches. My eyes were dreary, it felt as though there was a sock in my mouth, and I was incredibly fatigued. The car ride down had been extremely painful.

The Nurse Practitioner turned on the pulse generators and tried the first setting. It helped a bit. She kept trying new parameters and thirty minutes later, I was bright eyed and walking down hall, swinging my arms, and with only a barely perceptible limp—and still no medication. Last Tuesday, I went in again for a fine tuning. The results are amazing.

I have cut my Sinemet—the medication with the only ingredient that clearly works, levodopa—in half. I have stopped taking Azilect, Requip, and Comtan, and I feel great. I can drive any time of day or night now, I’ve been working out again, and my mind is slowly catching up with my body. I go back to the hospital for a final tune up this Tuesday.

A part of the tune up process, which is done by a Nurse Practitioner (ARNP), a truly incredible person gifted with a sharp mind, highly technical ability, and compassion surpassed by none I have ever met, is to turn off the pulse generators momentarily as we try a new base line parameter.

It is probably shocking to watch: the change is immediate and severe. My right hand immediately trembles uncontrollably, both legs kick out repeatedly in dyskinesia, and I can’t sit still. But the most frightening thing to watch is my face, as my eyes become clouded, my mind fuzzy, and I hunch over as though there is a hundred pound weight on the back of my neck. It becomes difficult to breathe.

Invariably the Nurse Practitioner apologizes when we must turn off the pulse generators, and invariably I am confused, but touched, by the apology. This is my favorite part of the appointments.

Instantly, I am transported back to the painful, heavy load of an existence developed over ten years. And just as quickly, in the time it takes to take a deep breath, I am back to the “old” Peter again, sitting straight, eyes wide and full of energy.

I never want to forget both feelings, even though I’d prefer to spend my life in the “power on” state. I am fortunate beyond words for so many things, not the least of which is the ever present reminder of how difficult life can be.

When undergoing the extensive pre-screening for DBS, I was asked by the surgeon how would I determine if the surgery was a success. I answered, “If I am marginally better in any way for one day, then I will consider the surgery a success.”

How lucky can a guy get? I guess I know the answer.

When life moves fast

I was introduced to the concept of “Pretenders” and “Contenders” in 1985 by Master Gunnery Sergeant Bearup, United States Marine Corps, while attending Aviation Officer Candidate School (AOCS) in Pensacola, Florida. He had been assigned to AOCS as the Chief Drill Instructor just a week prior to our graduation and commissioning as Ensigns in the United States Navy.

AOCS was a physically and mentally intense fourteen week training program that was, in the final analysis, all “pretend.” The academics, the brutal exercise sessions, the calculated abuse, were all conducted in a carefully controlled environment (although we didn’t know it at the time) to build stress to near real world levels with the goal of teaching us how to survive as Navy pilots and flight officers.

Still, everyone took AOCS extremely seriously.

There was one essential component of the training that enabled AOCS to rise above its contrived roots of pretense and challenge us to be true “Contenders”: the drill instructors.

My drill instructor, like all of the tightly screened noncommissioned officers selected for AOCS duty, lived in a world of “locked up” discipline that verged on religion. In fourteen weeks, my assessment of Staff Sergeant Gerhardt, United States Marine Corps, went from brutal sadist to mentor and hero, even though his actions were remarkably consistent throughout the experience. I was the one who changed.

Two images from the experience stay fresh in my mind, each associated with a lesson learned on my final day at AOCS that I am only now really coming to appreciate.

The first is that of Staff Sergeant Gerhardt’s enigmatic expression as I hand him the traditional silver dollar to convey my thanks for his training.

Eyes as serious as death; an almost undetectable curl at the edge of lip, perhaps representing a grudging nod to life’s penchant for irony; and an aura of absolute respect absent the tiniest hint of the disdainful snarl offered by the same man just a week earlier.

The image moves; it is alive, and my drill instructor is ageless. Staff Sergeant Gerhardt, United States Marine Corps, exercises reality’s cautious deliberation with a single hand, raised in the perfect edge of a salute. His fingers quiver in muscular tension as the salute reaches its apex, and with the barest acknowledgement of a descent, the hand disappears as if a magician’s trick.

It took me decades to truly understand that Staff Sergeant Gerhardt was not saluting me that day 29 years ago. Certainly, he was paying respect to the new rank, but there was more to it – he was saluting my accomplishment. He was honoring my perseverance in making it through AOCS.

He was saluting the person that I now knew I could be.

Instead of honoring a one dimensional snapshot of fleeting achievement, he was saluting the human potential that resides in all of us as we rise to challenge.

It wasn’t until very recently that I was able to broaden my understanding of the second AOCS image to its rightful importance. The scene is from within the AOCS barracks.

With no fanfare and no one to witness it, Master Gunnery Sergeant Bearup calls our class to form up in the hallway.

Master Gunnery Sergeant Bearup has been here before. The last time he walked these halls, it was with the same sense of noble urgency. Then, he faced the inevitable statistical horrors of Vietnam. Many of the young men that took a similar printed card from him during that tour did not return alive.
He walks up to us slowly, hands us each a small card, and looking me square in the eye asks without inflection, “Which will it be?”

I remember looking down at that card for the first of what would be many times in my life, in reflection if not always in reality. It read:

“In life, there are Pretenders, and there are Contenders. The question is – which are you?”

It is only now, at a not-so-spry 52 years of age that I begin to feel comfortable tackling the question. The honest truth is that I’ve been both Pretender and Contender at different points in my life, but as Staff Sergeant Gerhardt’s salute taught me, what one has done in the past is not what is important; what matters is how you resolve to live every day of your life, starting right now.

The past six months has been challenging to me in unprecedented ways. I initiated an on-the-water/underwater research project with the intent of writing about the experience in my next book. The short summary is that there is plenty to write about.

One of the unforeseen lessons from the experience was the degree to which I was still connected to an identity that I honestly thought had been left behind years earlier. Suffice it to say that I took on challenges that I would not have considered five years ago, and I got beat up pretty good and in the traditional sense failed to meet some of them, a few by a very long shot.

My Parkinson’s grew dramatically worse during the same six months, and I did my best to hide my near-constant pain. Each Parkinson’s transition – and there are now as many as a dozen a day – was accompanied by a wave of deep futility, a sensation of running in deep, immovable sand, of fighting a losing battle with a desperately urgent outcome in the balance. Unimaginably powerful ennui became my daily companion, a listlessness that is almost impossible to shake.

I would show up at my boat for often 10 hours of non-stop concentrated effort, fighting wiggles, painfully deep muscle contortions, debilitating fatigue, and surprise anxiety attacks of dizzying intensity.

And as I dragged my reluctant body home in absolute exhaustion, I would marvel at how lucky I truly was, because unlike most people I know (I’m fairly certain), I was honestly and soulfully happy: occasionally embarrassed for my short comings and difficult to explain changing limitations, but happy.

I was also tired, hungry, proud, scared, and many other states, but as I took on each new challenge – most of which were tasks I had given up all hope of ever tackling again four or five years ago – and succeeded in some and failed miserably in others, I realized a fundamental truth carelessly tossed aside as a child: winning or losing really doesn’t matter so long as you did your level best and never quit.

Parkinson’s disease is a sneaky son of a bitch, but I had endured, persevered, relentlessly refused to quit until the small victories were stacked high all around me, even though I was the only one who could see them.

And then, PD’s churlish specter found a chink in my armor. I had faced surprise attacks before, but none as cleverly devastating as this.

In the final several weeks of the project’s research, the tight quarters, stress, and risks of varying sorts combined in a crescendo of pressure and circumstance that allowed me to finally see clearly the fiendishly cruel nature of my adversary.

I knew that my symptoms had grown to the point of distraction, but it was not clear to me what that really meant until I saw for myself. I had been placing a GoPro video camera at different spots on the boat to jog my memory and help fill out detail in the coming winter when I actually started to write. I watched the videos.

It was immediately evident that my symptoms no longer just affected me; they had a direct and immediate impact on everyone around me. My nervous shuffle made everyone on edge; my gloomy struggle back from dystonia would bring everyone down, even my light-hearted wiggles made it difficult to look in my direction. I was a visual train wreck of distraction. And to top it off, my voice became so soft and muffled that is was virtually impossible to understand me at times.

I saw the video and it was painfully obvious that these were legitimate complaints: it is damn hard to be around me. This is not an indictment of anyone, it is simply a fact. Parkinson’s had found a way in.

Parkinson’s has attacked me in a highly vulnerable spot: it is attempting to isolate me, to push away those around me and eliminate the relationships that make life what it is. And for now, it might be winning.

For the first time since my diagnoses, I am very concerned. I am also emboldened. I have learned tricks to get around past attacks, and I will learn new ones to beat PD’s latest end run.

Twenty-nine years later, here’s my answer: I am a Contender.

Happiness: on considering self

Some dates and annual events are particularly well suited to marking the passage of time and the accompanying growth or decay of the human spirit. There was a time when I was so anxious to believe in my self-worth that I would create holiday catalogues of personal achievement and tangible wealth with videos that exploited and miss-used my children’s images to showcase what a good and successful person I was (ps. It was not long ago, and I’ll probably slip back into this not-as-bad-as-it-sounds habit in the future).

My futile attempts to inject a 21st century version of Calvinism into my hollow existence do not bother or embarrass me today in the least, this part of my life merely “was” and probably still “is” to some degree, but now I am aware. Am I any more enlightened or empathetic or good today versus back then? Who knows, but far more importantly, who cares? No one: and that is the way it should be.

As I sat down at my desk at 2:15 am to write this, unable to sleep any longer after only two hours because of my painfully stiffening muscles, I experienced no resentment, sadness, or angst. Near-violent dyskinesia made it take 50 minutes to type this far – not “write,” but simply connect fingers to key board correctly – this morning’s thoughts could fill dozens of pages without pause (time to get “Dragon”?).

In my well-worn visualization of you, dear reader, working up an errant emotion that society would gleefully approve in response to my self-description, my only identifiable feeling is one of mild frustration at my inability to effectively communicate that I am – for what is very likely the first time in my life – truly happy.

True happiness: the stuff of legend, the utterly human yet desperately elusive state that money can‘t buy, found only after no longer pursued. Not to worry; I have no intention of launching into a self-help diatribe, but I would like to try and explain, if for no other reason than to shut up the misplaced bemoaning of the many people who I am so fortunate to consider friends (first rule of Peter’s happiness formula – insult readers boldly and often: last rule too).

I would like to pass on some simple observations and musings that might explain this apparently inexplicable condition. The recurring event that triggered this realization was the third annual white rafting trip of a group of friends who – for the most part – are not those closest to me, but from a different social universe from my normal low brow associates (fair warning was given…).

Looking back at GoPro river video from three years ago, it is readily apparent that I have changed considerably. Most people have difficulty looking beyond the physical, however. What is harder to see is that the change is – at the end of the day – overwhelmingly for the positive. Finally, I think (several meanings here) that I might actually understand the timeless truism of the Socratic paradox: “I know only one thing: that I know nothing.”

It is, in my opinion, not a quantifiably oriented sentence; the meaning does not lie in how much or how little one knows. The meaning steers to the neutral acceptance that not only are we humans wildly ignorant, but that that’s not only okay, but once embraced it can settle one’s world-view of life into a more simple and digestible form. Meaning does not reside on a distant plane, but is in front of us all, most obviously to me in the words of children and young adults, those less corrupted by “higher” thinking.

During the 2.5 hour trip home from rafting, my son, another young man, and I engaged in one of the most enjoyable conversations of my life. My son drove, as I was fairly seriously “off,” for the duration as I transited three of my personal Parkinson state’s: the jagged twist of an hour’s worth of a writhy, mumbling and soft-spoken dyskinesia of optimism interrupted by the gloomy descent to dystonia inaction and just as quickly (maybe 7, 8 minutes due to adroit pill popping) back to dyskinesia. Good times.

One of the difficult to see positives of the last three years is that I have extremely little concern for what other people think about my opinion or me. I do have great concern for trying to understand the truth even when the truth is ultimately unobtainable. Routinely having people stare at you in public with generally neutral to negative expressions is a wonderful way to get over skin-deep impressions. I have never been very good at suffering fools gladly, but now I can suffer them without frustration.

Shallow conversations hold no interest for me, which is why I often resort to irritatingly goofy jokes when I sense one coming, which unfortunately in our society seems to be most conversations. But it’s not all sunshine and roses: I’ve also developed a horrible tendency toward condescension (or more likely, I’ve always had it, but can now see it). At times, I am unbearable, even to me.

Here are the conclusions from the drive home. Please understand that for me, the happiness came first; I’m just trying to understand its source.

1. The most basic source of motivation for virtually everyone resides in a tribal need to belong which at its inner core is based on personal insecurities.

2. The ability to develop true ownership of one’s identity devoid of external influence is probably a person’s most empowering attribute.

3. It is all okay, even – especially – when it is not. Work hard to accept the unacceptably unchangeable.

4. Go further if you want, but there is no real need: Understand, grow, and accept that you know nothing, in fact, revel in it. Be happy.

A bump in the road

Dawn’s patiently eager specter,
Schemes sickly in brightening day,
Cruel with well-honed diversion,
Silently awaiting its prey,

Decomposed jabs of distraction,
Blunt needles plunge slowly and deep,
Masking a stranger’s true nature,
A shadow’s faint outline of sleep,

A fluttering string of confusion,
Bind in contortions of sin,
Twisting in circled indifference,
Preparing for conquest within,

In painfully familiar direction,
With tactics pitifully weak,
The turn of temptation approaches,
The seductress too guilty to speak,

No duty or pity or honor,
Obscure misdirection or doubt,
Predictable rhythmic confusion,
A pathetic attempt at a rout,

Eyes locked in mortal gripped vision,
Transfixed beyond images past,
The black-soul tempest approaches,
Stand firm aside tiller and mast,

Waves beat in graceless harsh meter,
Caulked nerve holds muscle to steel,
Transparent enticement no match,
For unshakeable ken of the real,

Will free of purposeful measure,
With instinct manning the rail,
Lungs thirst for the round to be over,
For the fighting mad core to prevail,

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.