Photo courtesy of NASA.

ME AND
MY SPOTS

WRITTEN BY ETHAN STEWART
Me & My Spots

With little to no effort, I can throw myself a pretty mean pity party these days. Just a quick survey of my last four years on this planet and the reasons for this are obvious and understandable—diagnosed with MS, diagnosed with pancreatic cancer, severe bout of transverse myelitis complete with lasting neurological damage, massive and life altering gut surgery, and the unexpected and separate deaths of my father and mother many, many years before their time. I am thirty-seven years old and, well, I never really saw the cookie crumbling quite like this for me and mine at this early of an age. Life sure is a special sort of four-letter word, isn’t it?

But peppered amongst this shit-show run of luck have also come some of my truest pinnacle life-moments to date: marrying the woman of my dreams in the middle of a raging rainstorm on the coast of Southern California was a pretty darn special affair; my first trip to the ocean after a summer in the hospital was a beyond memorable dose of salty soul food; and the birth of our daughter Sawyer during the full Flower Moon of May this past year is something I will smile about on my death bed.

I AM THIRTY-SEVEN YEARS OLD AND, WELL, I NEVER REALLY SAW THE COOKIE CRUMBLING QUITE LIKE THIS FOR ME AND MINE AT THIS EARLY OF AN AGE. LIFE SURE IS A SPECIAL SORT OF FOUR-LETTER WORD, ISN’T IT?

The ebb and flow of this journey is not lost on me. I know I am still doing worlds better than the worst amongst us, but, man, it sure does bum me out at times to be stuck with a life so full of struggle and pain and isolation when the bulk of my peers are still chasing their dreams with nary a second thought about their own mortality. I look at pictures of myself from before this gauntlet began and I often resent the person I see in them, so carefree, and happy, and clueless.

It’s messy work trying to piece together any semblance of sustained personal happiness through all this. I try daily but fail more often than I succeed. I’m prone to wild and unprovoked storms of negativity and am grumpy as—on even the most sun soaked and brilliantly blue bird of days—the constant clouds of chronic pain, worry, and a body that doesn’t work right obscure the horizon for me despite my best efforts.

When things have been going so wrong for so long, “positivity” starts to sound a whole lot like “ignorance” in both application and meaning.

Take, for example, my most recent visit to see my cancer doctors. Ever since I had my tumor removed a few year back (along with half my pancreas, my gall bladder, and a large section of my little intestine) my oncologists have been optimistic about my prognosis. They have never dared mention words like “remission” or “cured” but they also have been careful to reassure me at every check-in that my situation is stable and one to be celebrated. And, while I tend to agree with this view, at least in an intellectual sense, I am also equally careful not to fully believe them—after all, I have four spots on my liver and one in my lungs that keep popping up on my scans. Terrifying stuff for anyone, but especially troublesome to a freshly minted father with plans to walk his daughter down a wedding aisle someday.

WHEN THINGS HAVE BEEN GOING SO WRONG FOR SO LONG, “POSITIVITY” STARTS TO SOUND A WHOLE LOT LIKE “IGNORANCE” IN BOTH APPLICATION AND MEANING.

The millimeter sized shapes on my scans, my most recent appoint confirms, remain unchanged. They are too small to biopsy, says my oncologist, and so we wait and we watch and I live with them through all the ups and downs of my days, their presence coloring in around the edges of my every waking minute with the angst-inducing and stressful hues of the unknown. A twist came, however, when, armed with the results of some new types of imaging, my doctor, for the very first time, admitted to me that some of the spots were “likely related” to my cancer. She was adamant that the lack of growth (some two years of it) was the main thing for me focus on, but I was barely mentally there enough to hear it—my brain fell fast down the rabbit hole of fear; my daughter was in my lap, my wife in the seat to my left, and still I sunk into the darkness, feeling very much alone and terrified by my thoughts.

I WAS PISSED AND EXHAUSTED BY THE BURDEN OF IT ALL AND I WAS ABOUT TO LOSE IT AT THE EXACT MOMENT THAT MY BETTER HALF, WHO HAS BEEN BY MY SIDE THROUGH EVERY INCH OF THIS TRIP, WAS FEELING A HUGE AND WELL-DESERVED SENSE OF RELIEF.

Thirty minutes later we were in my truck driving away from the Stanford Cancer Center and it was clear that my wife and I had taken two markedly different things away from the appointment. She was busy updating family and friends about the “good news” of my visit, while I was mentally calculating the various ways I could still be a daily force in my daughter’s life even after I die (the latter being something which seemed certain and soon at that moment). I felt the outer edge of a rage-filled pity party creeping in. I was pissed and exhausted by the burden of it all and I was about to lose it at the exact moment that my better half, who has been by my side through every inch of this trip, was feeling a huge and well-deserved sense of relief.

But how could this be?

The answer lies in the madness-inducing haze of pain. I’m not just talking about the “Ouch! I just hit my hand with a hammer,” or the “God, my gut hurts because I have re-assembled plumbing in my stomach” types of pain, but also the paralyzing mental hurt that comes from weeks, months, and years of not feeling well, the anguish that lingers from a broken heart and the writhing ache of losing a loved one.

Pain, like time, can be measured and experienced in any number of different ways. It morphs to match your reality and then wreaks its havoc from there, distorting views and crushing your ability to stay grounded and in the moment. Pain, I have come to believe, is the antithesis of freedom and the kryptonite of free-will. When the pain is winning, there are things I simply cannot and will not allow myself to do, think, or feel. Such was the case during the aforementioned car ride. My pain was keeping me from the greater truth of the moment. Instead of holding my girls tightly and shouting a primal and joyful “Huzzah!!” that my spots were stable and my situation unchanged in all the most important ways, I was rolling in the mental muck of hurt and playing a lonely and morbid game of what if.

WATCHING MY DAUGHTER SLEEP THAT NIGHT I STARTED THINKING ABOUT WHAT TYPE OF PERSON SHE MIGHT GROW TO BE AND WHAT ADVENTURES SHE MIGHT GET UP TO AND SURPRISED MYSELF WHEN I REALIZED THAT I TOO WAS ALIVE AND WELL IN ALL THOSE BRIGHT EYED FANTASIES ABOUT THE FUTURE

I wish I could say that my spirit endured that day and that I rallied back from the brink of a full blown meltdown, my outlook buoyed by my hard earned insights into the various machinations of pain. But, alas, life is no Disney movie and I am no leading man. I diligently refused myself the good feelings of relief that my wife was enjoying and even took a few swipes at her state of mind with some choice Pollyanna declarations about my health and my spots and my future. It was sad, really, and completely unfair when considering the true score of the day.

My clarity didn’t come until a few days later. My body feeling good and the pain cycle all but at a standstill after a couple sessions of body work, meditation, and delicious clean food, I was able to see my doctor’s opinions in their proper context rather than from the narrowed view of fear and suffering. It was then, and only then, that I felt the muscles in my jaw loosen and my breath start coming from a place deeper in my body. Watching my daughter sleep that night I started thinking about what type of person she might grow to be and what adventures she might get up to and surprised myself when I realized that I too was alive and well in all those bright eyed fantasies about the future. Certainly, my reality was no different than just a handful of days prior—my joints still stuck with pain, my gate still thrown askew by neurology, my liver still flecked with unknown and potentially nefarious growths—but I was living in the full measure of the moment, taking into account all that I could from both within and without, and that made all the difference in the world. The trick, I have since realized, is to do this more often than not and let the momentum build from there.

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