Appreciating the rain

Perhaps like most people, I grew up loving the sun and grumbling about the rain, not-so-secretly wishing that the summers would last forever. It never crossed my mind to question this assumption, maybe because the clear sky meant running and jumping in outdoor play as a child, although I do recall a few youthful antics sliding around in a muddy downpour. The sun came to mean limitless possibility, the rain often a harshly negative reality, and these views solidified and strengthened into adulthood.

Relatively recently, I listened closely to a friend who held firm to the opposite view: they found comfort and security in the rain, a nurturing cleansing and watering of life. To them, the sun was necessary, but it also wielded an impersonal scorching energy that pried them open, leaving them bare and vulnerable to a hostile world.

Despite a sincere effort to understand, I could barely intellectualize this point of view and seemed hopeless in ever gaining anything other than a mild depression at even the thought of a cloudy or rainy day. But I kept trying, pretty much every time it rained, attempting to appreciate the dark weather on some deeper level. I am only just beginning to experience a glimmer of comprehension over a year later.

Life metaphors of the contrast of good and bad, darkness and light, and the need to “appreciate” one for the other run rampant through the logical mind, but I felt something entirely different. I started to see, hear, feel, touch and taste the rain from my heart, asking my brain to take a break in trying to figure out consciously why I defined myself as someone who “didn’t like the rain.” On misty dog walks, I began to see parts of nature that had shot right by me during sunny afternoons when vision overwhelmed the other senses to inconsequence.

While the sun had me focusing on an obscure infinite horizon, the rain put me just a single step from the life in front of me. The sunny vista evoked imagery of “someday,” whereas a rainy overcast focused all the senses in the here and now, an often scarier picture that few I know care to acknowledge. While the sun spoke to future possibility, hope, and past out-of-touch memories, like regret, the rain gently nudged the senses inward toward contemplation of the now, the only place action has meaning.

Getting in touch with life’s rainy days nurtures and cleans, calming distant superficial and materialistic dreams while satiating a natural thirst to simply be. It might be valuable paying attention to those with the most divergent views from your own to best experience the life that surrounds us all.

Being lost

How hard we work to stay distracted, desperately shielded from the smallest honest glimpse; surrounded by idols and walls and carefully contrived paths to nowhere; setting up the game to rules born of obscure fancy.

Until that rare person pierces the image, deflating the world to simplicity, without intention or motive or purpose, with only a kind word or warm look. Straddling the mirage’s complexity and vision’s loving nothingness is a hard place to live.

But it is the life we have; lost in thought’s misdirection, spinning faster and faster until blind to both worlds, lacking confidence to make the jump into either. It is a cage of purgatory-sized meaning.

Millenia of evolved senses work in unison with the single goal, survival, a futile battle measured in time’s deceptive cadence. Instinct, living uncomfortably close to the spirit’s will to believe.

Walking the dog

Two and a half years ago, I was walking the family English Golden Retriever through our rural neighborhood. It had only been a couple of months since my Deep Brain Stimulation (DBS) surgery, and I was having difficulty relaxing and reaching a rhythm as my pooch pulled, then abruptly stopped to sniff, jerking the leash painfully against the still tender battery implants in my chest.

I was frustrated. Unable to exercise except for these walks, becoming stir crazy in my house and the inner workings of my mind, I was frozen in will trying to sort out this new under the skin surgical miracle-world of electrodes and wires. I was literally reaching the end of my rope with each tug of the leash.

Approaching the community pond, a familiar form shuffled toward me. It was a large man, disheveled and unshaven with the vaguely menacing air and cautiously furtive manner of one of society’s outcasts. I immediately knew who he was.

I had seen him along the road numerous times over the years on his way to and from visiting a friend, perhaps his only friend in the world, an older lady who lived by the water. He was well known in the community, having sparked an outcry about ten years earlier when it was learned that he was a registered sexual offender.

His crime had been as severe as they came: the rape of an adult woman in another county some 20-30 years ago. He had spent time in prison and was only eventually released under the permanent official labeling of the State’s sexual predator statute. That was all I knew of him.

As one deemed “likely to re-offend,” any community he attempted to reside in—for the rest of his life—would receive law enforcement and neighbor notification of his presence. He had visited the elderly lady for years, occasionally being picked up and evicted by Sheriff’s Deputies after he crossed a legal threshold in his stay that met the criteria for an unreported residence.

Several days earlier, an electrical fire had erupted at the lady’s home in the middle of the night, killing the woman and allowing the man to barely escape with his life. I assumed that he had come back to the ashes to pay his respects before leaving for who knew where.

In the past, I had allowed a distant nod in passing to the man, willing to give him the benefit of the doubt so many years after paying a debt to society that, despite releasing him, still permanently labeled him. It just seemed cruel to technically offer the man a free life, but one with strings attached that guaranteed that he would be rigorously tormented forever.

But to be fair, I knew very little about the circumstances surrounding his earlier conviction. Maybe he deserved a life sentence or worse; maybe not.

“Good morning,” I said, feeling uneasy as he walked out of our upper-middle-class community with nothing but his ragged clothes and a small backpack after losing his only friend in the world.

He surprised me by answering in a strained voice, as if unaccustomed to speaking, “How wonderful it must be to just walk where you like with your dog.”

I replied, suddenly deeply ashamed at how ungrateful I had become, “Yes, it is.” I often think of that man, sometimes wondering what happened to him.

And I ponder his words, marveling at the beauty that can be found in a simple act such as walking the dog: two creatures tenuously connected in a vast and lonely world if only by a leash and the occasional affectionate nuzzle.

Imagination’s key

Intellect, perched smugly secure behind convention’s walls, fragments the soul into scattered pieces, rendering it weak with contrived conflict. We are taught to be one of many, unique in conformity’s perceived choices. Black and white, right and wrong; the options dazzle in simplicity, enticing hungry exploration forward to nowhere, like an airplane soaring west until it arrives where it started.

Words like position and legacy decry and diminish, while only the absence of argument can hint of existence. We enter this world alone, frail, and naked, but with the warm memory of a comfort beyond. Life’s parting gift is learned doubt and unease.

Reason, finite and fleeting, desperately attempts to define us, but imagination unlocks the soul, allowing a glimpse of reality through silent acts of compassion and kindness.

Humility’s legacy

Man’s basest instinct, fueled by ego and pride, goads us in a legacy of “more” as money, power, and fame greedily measure out our spiraling descent. Insecurity is humanity’s collective theme; humility our lonely virtue.

The conflict with self never ends, battling quiet mantras that ring hollow and weak, sabotaged by the competitive urges that seek to derail our chugging climb.

Life’s desperate loneliness casts its broad shadow—invisibility; not mattering; existing without being. Ego homes in on our shared insignificance, bullying the fading light, sputtering the shared flame into ethereal oblivion.

Yet, still, we struggle; we try. And we believe.

The riddle of the Sphinx

When asked, “What is the creature that walks on four legs in the morning, two legs at noon and three in the evening?” Oedipus correctly answers, “Man.”

The mythological Sphinx’s riddle illustrates the physical progress of Man through life in a linear fashion: as a baby, Man walks on all fours; as an adult on two feet; and when elderly with three appendages through the use of a cane.

As I pack two folding canes, not used in almost three years, into my backpack, it strikes me that our trek through life is in some ways substantially more complicated to explain, but far easier to accept, when viewed through a non-physical prism. Physical aging may indicate a progression, but it offers little insight or comfort.

I prefer to think of life as an arc, perhaps even as a full circle, where one dies as one was born: an infant in intellect, yet infinitely wise in spirit and rich in soul.

The two collapsible canes have reclaimed a temporary place in my wardrobe due to the need for an MRI tomorrow, which in turn requires shutting down my pulse-generating batteries for the duration of the exam. I’ve had a nerve issue causing a shooting pain down my leg for over two months, and the MRI is for my lower back.

I have not had the deep brain stimulation units (one on each side of the brain) turned off in about two and a half years. I’m not sure what to expect, particularly since I now take time released Levodopa capsules that were unavailable to me before my 2014 brain surgery. So, I pack the canes next to my DBS controller in the backpack in case I am unable to walk.

The necessity of using two canes—four appendages—to walk aligns the Sphinx’s physical progression in the same circular direction as our spiritual journey: toward a non-judgmental peace with the world last experienced, by me at any rate, as a child.

Three distinct childhood ages come to mind, reverse markers on the journey to awareness: 15, 11, and 5. These are just my personal associations with phases of growth, or decay, depending on how you look at it, and I don’t imagine that the specific ages are important. They are probably different for each of us.

I think of life’s circle reversing for me somewhere around age 45, about ten years ago. Up until that point, I had considered historical knowledge, politic awareness, and keeping up with current events as critical to understanding the world. I had lost any semblance of childhood innocence and acceptance, not realizing that the harder I tried to understand life, the more impossibly complex it became.

So somewhere around age 45, I took a spiritual turn without really knowing it. I began thinking in younger and younger terms, looping back toward a childhood awareness, not yet even sure of why. Currently, I view myself, in spiritual terms, in the vicinity of age 15.

Fifteen was an age of exciting possibility, a world of simplicity and awe of the future. It was also a milestone of when I began dampening my awareness: it was the age when I started to drink. But mostly, 15 was a crossroads where I could still get excited about first love, could enjoy a walk through the woods by myself while simultaneously developing a fierce competitiveness and appetite for adventure.

Today, I try hard to shed my competitive nature while exploring the same intensely real feelings of innocence. Whether the world is a literal illusion, or merely a façade of Man’s ego and insecurities, at age 15 I was still mostly immune to the illusion’s distracting pull.

I look forward to 11, an age of exploration when only the most basic of emotions was important. Money held no sway; power was an empty word.

But most of all, I look forward to becoming 5 again, of looking through the wise eyes of a child bereft of life’s insanities. After 5, I lose sense of who or what I was, of identity, which is a transition that offers a real opportunity for internal peace.

We humans are universally imperfect and constantly changing. As a friend once told me: it’s tough being human. Yes, it is, but that’s okay. For now, this 15-year-old might be back to walking on four legs again, if only for tomorrow.

I look forward to traveling a path of non-judgmental acceptance someday: aware, alive, at peace—and naturally—on all fours.

 

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.

Cheers,
Pete

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.