In the past, I've written much about the need to break down the potentially overwhelming tide of emotional and physical strain that comes part and parcel with chronic progressive illness into smaller, more easily navigated bits, by living in the moment, consciously creating your own reality, and sorting existence into manageable servings. Depending on the amount of crap being shoveled your way at any given time, this can mean taking it day-to-day, hour to hour, minute to minute, or sometimes even second to second.
Of course one can't help but look forward occasionally, as it's quite necessary to do so in order to plan treatment strategies and live your life wisely, but for the most part staying rooted in the now allows a person to fully experience all the good that each fleeting moment has to offer, and not let precious time slip from their grasp while the mind is focused instead on a past that can't be changed or a future that can never accurately be divined. As my disease has progressed, I've found my attempts to fully occupy the present have become more difficult, even as they simultaneously become all the more vital. Efforts at mental discipline and maintaining clarity of mind are rewards unto themselves, though, and without them I very well might have gone barking mad years ago.
Throughout my life, I've also often found comfort in a different strategy, one that instead of attempting to untangle life's complex web of emotions and circumstances in order to escape their snares, tries to take a bird’s eye view of things, understanding that my life is of relatively tiny significance in the context of the long view of human history, and tinier still as part of a cosmos so complex that it is literally beyond the limited powers of our understanding. It may sound a little morbid, but even back in my healthy days I found nothing so affirming as visiting old cemeteries, peering at headstones bearing the names of people long forgotten, trying to imagine the distant lives of those in the ground whose secrets were forever lost to time.
I spent a lot of time in New England back then, a region of the country peppered with graveyards dating back centuries. Gazing at weathered stone markers chiseled with names and sets of dates tells you almost nothing about the people they were meant to memorialize, other than the gender of the dead and the span of their lives. Yet each engraved stone represents the richness of a singular human life, one that was once filled with dreams and desires, failures and triumphs, moments of great heartbreak and also those of buoyant joy. Despite that cacophony of the assembled experiences and emotions that make up the sum of a lifetime, now there is nothing but silence, just the barest of reminders that a person whose name had not been uttered for perhaps hundreds of years had once graced this ancient earth.
When I lived in South Florida, back in the 90s, I developed a very close relationship with my paternal grandmother, a woman with a larger-than-life personality who had the unusual ability to be incredibly endearing and tremendously maddening all at the very same time. She was extraordinarily generous to those she loved, but nursed wicked grudges over perceived slights and insults that were decades old. When one of her perceived nemeses passed away, she was always quick to chime in with a "May they rest in pieces!"
I tried to have dinner with her about once a week, and very few of those meals were ever boring. Over the course of the roughly 10 years I lived in the Sunshine State, I amassed enough stories involving "Grandma Smaidee" to fill in novel, one which really should get written. My grandmother's emotions knew only one speed, pedal to the metal, and she enjoyed good food and good booze. She had the heart of the lion but at times could be tremendously timid, and was one of the least self-conscious people I've ever known.
Of all the things she loved and valued, chief among them was beauty, in objects as well as people. A great beauty herself, it was truly difficult for her to understand that beautiful people were not always so attractive on the inside. When I once told her that a particularly winsome girlfriend of mine had cheated on me, she just about refused to believe it, and when I finally convinced her of the fact, she told me it was my own fault for going out with a shiksa (yiddish for a non-Jewish woman). That my head didn't explode at that moment can only be testament to the thickness of my skull.
My grandmother died in 2006, and as I had become so close to her, the family decided to leave it to me to choose the inscription on her gravestone. She was buried in a family plot, so she didn't have a traditional headstone, just a small stone marker on the ground which didn't allow for many words. All of those around hers said things like "loving husband, beloved wife, cherished son”, etc. They conveyed nothing of the actual person who was buried 6 feet below, and might well have read "generic human being". After giving it much thought, I decided her inscription should read "She Walked in Beauty…”
I'm not sure if she'd be delighted or incensed with my choice, but I imagined that 50 years hence, someone walking by might notice that my grandmother's marker was different than everyone else's, and pause for a moment to think about what kind of woman might inspire those words.
Though we all occupy the center of our own individual awareness of the universe, in which the circumstances of our lives take on seeming momentous import, the reality is that in 100 years the planet will be populated by all new people, and except for a very few of us, in 2112 none now living will even be remembered. Sure, our names may occupy a place on some antique census list or on someone's family tree, but the essence of who we were, all of the majesties and follies that made us human, will have long been forgotten. Given that fact, how downright silly it seems to take ourselves as seriously as we often do, as if our trials and travails have any meaning beyond the small span of time that we happen to inhabit in the long march of humanity.
Faced with this ultimate truth, allowing misery to snatch any of the scant few moments granted us seems quite foolish indeed, whatever pitfalls and traps may lay in wait. Of course, spending every waking moment happy may be due cause to certify insanity, but given a dollop of perspective, and secure in the knowledge that you yourself are mere ephemera, it's clear that one must always strive to let go of the dark and embrace the light, even when stuck in a dimly lit room.
Being given a dread diagnosis shocks us with the fact of our own mortality, a universal certainty that when healthy we mostly choose to ignore, almost literally whistling past the graveyard. While no one wants to dwell on the fact that their life is but a speck in the grand scheme of things, acknowledging such goes a long way towards living mindfully and realizing the preciousness of each moment we spend on this side of the grass. Although circumstances might not have played out quite as we had planned, fighting against the currents of life only leads to exhaustion and eventual capitulation.
This is not to say that we should surrender to misfortune, but rather we must learn to appreciate the updrafts and avoid the downdrafts, and like a glider soaring high, rise above the hills and valleys below. This is almost never easy, and at times can be awfully damned hard, but to do anything else is to lose control of the short gift of time with which we have been bestowed. I'm of the belief that quality of life trumps quantity, but as long as there is quality to be found, we owe it to ourselves to find it. Live well, as the light of existence is brief, and the darkness that follows an impenetrable mystery. As a friend once told me, life is uncertain, eat dessert first.