Everyone has their demons, struggles that test a person’s grit in the rawest of terms. My demon of the last eighteen years has been Parkinson’s disease (PD). As we stumble through life’s labyrinth, if one pauses long enough to listen to the silence, it becomes apparent that even with our vast differences in understanding of the world, we are all searching for the same thing: an Odyssey-like adventure of personal meaning. Parkinson’s pushes me out of my comfort zone, making me consider the world differently. In the manner of the ancient philosophers, PD is both blessing and a curse. A blessing in that my demon has shown his face to me, and I no longer have to guess at the nature of what will likely be the final trial of my life; a curse because PD is still a progressive, incurable neurologic condition. I expect Parkinson’s to continue providing a steady stream of pain, discomfort, and anxiety until I die. But that is okay: we all will die—this is life’s only indisputable fact.
How we live our lives matters. Our response to everyday events directly impacts whether we end life at relative peace, content, and fulfilled. Our reaction to what life throws our way determines whether we can leverage our suffering to allow for a glimpse of meaning, maybe not enough to fully understand why we are here, but sufficient insight to add purpose to our lives.
Transmuting life’s hardships into joy is an awesome power, and it is available to us all. Despite what my mother told me as a child, I am not special. I came to these conclusions not because of some quasi-religious ritual, but instead because I set out decades earlier to discover who I am on the most fundamental level. It has been a long, difficult road filled with retreats of frustrating pain, but the path has fortified me with an energy and inner strength not foreseen in my wildest dreams. My journey describes more than a characteristic of life transcending death. The long, hard slog has unearthed powerful tools that go beyond conventional belief.
I can’t quantify how many times, whether it is while breathlessly scrambling up a steep slope, swimming in the frigid northwest waters, or fighting off the midnight horrors of existential loneliness that I am surprised by the stronger me that emerges from the trial. We are not endowed with a limited, finite reserve of strength. Instead, fortitude begets fortitude, with each small victory leaving me with surprising resources to fight the next battle.
My journey of self-discovery has allowed me to see with chilling clarity how each level of pain or discomfort has strengthened my will to continue. This power may be available to everyone, but that does not mean that most are aware of it or willing to endure the challenges of accessing these untapped reserves. It requires a deep stare into Nietzsche’s abyss before the long, stumbling plod back to optimism can begin.
Blue Water is a collection of 100 vignettes, most about 300 words long. After two and a half decades of searching and coming up empty-handed, it is unlikely that I will discover a single unifying truth. Instead, I’ve learned to be alert for fleeting glimpses of partial meaning found during unresolved accounts of everyday life, only witnessed obliquely during states of complete surrender.
“I don’t know and probably never will” is a powerfully liberating spiritual base to conduct one’s life—it is a supreme freedom. Maybe lasting peace is as simple as a deep-seated acceptance, knowing that life’s answers to the big questions are locked in the soul, where they will remain a mystery until we die. “It is what it is,” as the saying goes, including me having Parkinson’s, so why not shake things up a bit, so to speak, and welcome it?
My beliefs have evolved and are by no means rock solid. Freedom from belief allows the mind’s elucidatory story to keep moving forward. Still, like so many others, the temptation exists to replace my old, faulty version of reality with a fully prepared alternative narrative, leaving no breathing room for uncertainty or honest ignorance. So far, I have been successful in avoiding this rabbit hole.
Beginning as the COVID-19 pandemic enters the world stage, Blue Water describes life’s brilliance on the eve of a breakdown in mutual understanding of even the most basic tenets of “reality.” Reflecting on this newest collection leaves me to ponder whether the words are indeed mine or come from some cosmic warehouse of subconsciously hidden syntax. Sometimes, I can’t believe the pearls that travel from my brain to my fingers and into print, casting me adrift, free-floating in an anxious sea of prospective plagiarism.
Parkinson’s disease plays non-stop in the background music of my journey, always there but leaving me with surprising latitude in my response to its presence. As a local school board director for a dozen years, Parkinson’s usually behaved, permitting me to hide most symptoms during meetings to avoid distraction. Since my earliest years with PD, I’ve made it a priority to let my condition be known to avoid getting caught up in the drama of other people’s lives.
I exercised relentlessly during these years, paying little attention to the disease. Then, in about year five, my symptoms rapidly intensified, making them impossible to ignore. By year nine, I opted for deep brain stimulation (DBS) surgery to counter disease progression. In late 2014, thanks to DBS, my wife and I could slide back into our habitual life of old, including finishing the raising of our two children in preparation for sending them into the world. All the same, knowing that Deep Brain Stimulation’s improvements to my symptoms were temporary, a dark cloud of uncertainty hung over me. My destiny was to travel back to where I had been symptomatically and beyond before brain surgery, only this time without the option of DBS’s Hail Mary to save me.
DBS surgery gave me five years nearly free of the more onerous symptoms and another four with significantly reduced indicators of the disease. Traditional Western medicine limits available Parkinson’s treatments to pill taking and a few highly specialized procedures, such as DBS, which requires extensive screening, is not always effective and can prove dangerous in certain patients. Today, my symptoms worsen steadily, but that doesn’t bother me. I do not obsess about potential cures or Google search for breakthroughs in treatment. I rely on my neurologist to keep me updated, a professional who will let me know if something new and promising is on the horizon, leaving me to live my life.
Between doctors instructing patients on how best to moderate Parkinson’s symptoms and society’s subtle pressure on the behavior of anyone with a serious disease, it can be difficult for a person with Parkinson’s to feel empowered. Without personal empowerment in one’s health, maintaining a positive attitude gets harder and harder. At times, all that can be done to break free from spiraling depression is to fight back through the pain to preclude feeling sorry for yourself. Other times, the best answer is to turn the situation on its head and embrace Parkinson’s.
Resilience plays a crucial role in any strategy to combat Parkinson’s—the disease never rests. On December 14, 2022, I wrote about resilience in “The Hard Way” as follows:
“Resilience gains strength with a rebellious attitude toward the popular narrative of victimhood. It thrives when keeping an open mind, becoming available to those who put the well-being of others ahead of their interests…But resilience only settles deeply into a person’s soul after developing a habit pattern of doing things the hard way…and sustained resilience takes much work and patience…Choosing not to get a disabled parking pass is an example of the hard way. The extra walking is not only healthy but also boosts morale by avoiding the promotion of self-identification as someone with Parkinson’s disease.”
When I wrote this, I naively thought it to be an innocent sampling of the glaringly self-evident. I was way off. Realizing for the first time that I was an outsider in the Parkinson’s community, it struck me that I had taken a vastly different approach to the disease than most. Approaching two decades since diagnosis, I don’t consider myself disabled and have yet to get a handicapped parking sticker. Accommodations designed to help those with Parkinson’s—for example, using Velcro connectors instead of shoelaces—might make life easier for a time, but is there a price to pay for this attempt to avoid the unavoidable? I choose not to find out: I can tie my shoes just fine, although at times it tests my patience. Parkinson’s disease is well known for affecting people differently in type and severity of symptoms. Could individual response to the disease play a part in that equation? It seems obvious to me: how could it not?
What I call the “victim model” is, at its core, an issue of power. We have all accepted this model to some degree. Traditional medicine seems to have a propensity for emphasizing the victim model. The victim mindset willingly, eagerly even, relinquishes power over treatment decisions to any of a host of healthcare professionals. Following “Doctor’s orders” is a term that has always rubbed me the wrong way, going so far as to cause me to snap at a well-intentioned Medical Doctor (M.D.) after a 2019 presentation to the Long Island Divers Association in New York. After the talk, the Doctor cornered me, demanding to know what kind of M.D. cleared me to dive under the circumstances, given my Parkinson’s and the technical nature of deep dives. My unkind answer is illustrative.
“It’s my life,” I answered incredulously, “and no damn Doctor is going to tell me what I can and cannot dive!” We calmed down, talked about it briefly, and parted as friends.
Society’s promotion of the victim mentality gently herds the person with Parkinson’s to sanctioned behaviors such as fundraising. If you find yourself looking to others for approval, you have given up your power. The hell with what anybody else thinks. The tragedy is that many with Parkinson’s do not engage socially or in certain activities because of how people might judge them and instead rely on support groups for socializing. There is nothing inherently wrong with this, but it does run the risk of reinforcing Parkinson’s role as a person’s dominant identifier.
The reasons for my status as a PD outsider are, in retrospect, quite clear. I don’t belong to a support group, a staple in traditional medicine’s Parkinson’s mitigation efforts. There is also my discomfort with fundraising: I am uneasy about asking for money to support a cause that might potentially benefit me. I also believe that contemplating Parkinson’s suffering from a spiritual perspective can be profoundly revealing, an effect diminished by a focus on money. The final reason I am an outsider is that I’ve never attended one of the conferences held by the popular national or regional PD non-profits, where Parkinson’s insiders meet to compare notes for the year.
I believe that my outsider status and refusal of special treatment directly impacts my physical capability. I strive to be creative in compensating for Parkinson’s progression, creating games, and making it fun. When balance finally became an issue, I started going on one-hour hikes on steep trails, where a lack of disciplined attention would cost me dearly. At a recent appointment with my movement disorder specialist, she suggested getting a pair of walking sticks to help with balance on these walks. This misses the point entirely. It is through the additional discomfort of not using any mobility aids that I am able to reach my highest contemplative state. It is only by doing things the hard way that I become temporarily privy to spiritual insight. These days, when I am out on the boat, steering into the current and adjusting power until achieving an in-place hover, I think of how it relates to balance. How could these daily habits not have a significant impact after 18 years of repetition?
Do I have hard evidence that the empowered approach reduces symptoms more than the victim model? No, I do not. What I am sure of, however, is that the empowered approach has resulted in my consistent happiness. Every year, my PD progresses as symptoms worsen, yet I find myself happier, more fulfilled, and slightly more at peace than previously. Yet living empowered is not a more leisurely path; it is, in fact, much harder than existing within the victim model. This may be why so few people opt for empowerment: lasting growth can only be achieved outside one’s comfort zone, where transformation can be rapid and substantial, and if there is one thing that terrifies the egoic mind it is change. My goal in life is to push-back at perceived limitations while trying to help others, challenging my beliefs, and sharing life lessons learned through my writing. We all will die, and probably not in the manner expected. How and when I die is unimportant as long as I don’t die today.
The empowered route doesn’t require engaging in dangerous or eccentric activities; that is just my preference. Any interest that requires a bit of creativity, such as painting, singing, or photography, will probably do the trick. Not waiting for outside permission to act is at the heart of the empowered approach. Medication efficacy especially benefits from the empowered patient. The neurologist cannot tweak drug doses in real-time as needed, even if offering weekly or daily appointments. Personally, I make small changes to my medication regimen hourly, a responsiveness impossible for a doctor to mimic. Neurologists still play an essential role in managing a person’s drugs by providing safe limitations in dosages. However, it is a supporting role, not the lead. The empowered patient need not wait for an appointment to modify a plan for a progressive disease that is constantly changing.
My perspective on life has little to do with Parkinson’s. I am not desperately searching for a way out. I fight PD as hard as I do to continue my spiritual growth, which is in natural balance with things exactly as they are, including my having Parkinson’s. There is no cure for human suffering, but by reaching deep within for life’s innate joy, suffering becomes manageable—and even occasionally fun—making possible a happy, fulfilled life and, with a touch of grace, a contented death.
I don’t need a guru to know that all answers lie within me. I learned to look inward for life’s answers while searching the ocean bottom for a missing navy jet. I had flown this specific jet four times a quarter century earlier, both from the deck of the aircraft carrier USS Ranger and while based ashore. Miraculously, we found this very same aircraft after a year and a half of strenuous and dangerous effort, both above and below the waterline. Somehow, finding the jet I had flown as a young man introduced a coherence between the past and present in my life, an alignment that completed a circle of unknown origin or significance. The experience was intensely revealing, teaching me more in a month about who I was than the previous five decades of my life. It also taught me that life’s mysteries need not be explained to carry with them an abiding grace.
Discovering peace during the process was the real miracle, and I have sought that sense of contentment ever since. It is why I write. Please take a moment to reflect and focus on the essential things in life while acknowledging life’s highest truism; we all will die.
Because we most certainly will.
Born a Pisces, Poseidon has always been my god.