Sunday, February 16, 2020

The Dying of Jon Spiller

by G. Jack Urso

Obituary: Jon Dayan Spiller, of Mesa, [Ariz.], passed away May 24, 2015. He went peacefully and surrounded by love.
        Image 1: Jon Spiller (Facebook)
I met Jon Spiller once about 1990. I was with a friend visiting his mother, Roz, when he slunked in, told Roz where he had been, where he was going, changed his shirt, and left. I was briefly introduced. I may have said, “Hey, man.” I don’t quite recall. That was my sole interaction with him. Ever. Today, I am writing the story of his dying.

It is easy to write about life. All you have to do is write about what has happened and who it happened with. Death is pretty simple to write about as well because it mainly involves writing about those left behind. In that sense, both are shared experiences. Dying, however, is harder to write about. It’s a journey that exposes the victim right down to their core. Dying is ours alone and belongs to no one else.

Jon was a relatively young man in his 40s when he died. Prior to that moment he slowly accumulated a catalog of chronic conditions, including celiac disease, diabetes, psoriasis, and ulcerative proctitis. Yet, those were not what killed him. It was cancer — cancer that ate away his nose and face.

According to the American Cancer Society, in 2015, the year Jon died, approximately 1,620 people died of the disease every day. The day that Jon died, about 1,619 other families sat forlorn at hospital beds or in small bedrooms at home filled with the detritus of their loved ones’ medical care. Some died alone. Some died forgotten too quickly. The only immortality we can be sure of is in thoughts of those who loved us, and when they go our existence finally fades away, save for a few words preserved in cyberspace that may linger long after even those who loved us have passed on.

He Flies With His Own Wings

Jon Spiller got a rocky start in life at 3.5 pounds at birth. His immune system, which was problematic in his end days, was comprised from the start. From birth, Jon was constantly hungry. As an infant, he was barely strong enough to sit up and eat. Like most boys, he drew on walls with crayons, played baseball, tested his strength, and otherwise often got into mischief. At the young age of 3, Jon figured out how to sneak into the neighbor’s horse paddock to play with their horse, who could have easily trampled him, but he miraculously managed to escape harm.

Roz encouraged Jon’s interest in Little League Baseball, but as the other parents’ arguments over close calls grew more hostile, he asked Roz if she wouldn’t mind if he dropped out. It just wasn’t fun anymore. As a young boy, Jon measured his growing strength by trying to move heavy items, eventually to the point he got a hernia. Roz was unable to stay with Jon overnight in the hospital, but an older boy sharing the room with Jon looked after him.

There was always an angel looking over Jon. He required some extra attention growing up, but, as Roz mused, life sometimes requires a little extra heavy lifting.

Yes, doctor, I do in fact have a hole you can look at . . .

Jon’s final journey first began with persistent nosebleeds. An ENT (ear-nose-throat) doctor saw Jon, but observed only a small wart-like growth. Nothing to worry about the doctor said, according to Jon, not like it was cancer or anything, right? Perhaps it was that infected tooth that needed to be pulled. Jon dutifully followed up, yet the nosebleeds persisted. Upon a second visit to the ENT doctor, the growth had grown so big it had pushed up through his septum and was now inoperable. It could have been removed six weeks before, yet the knee-jerk reaction to avoid an invasive medical procedure resulted in Jon’s death warrant.

The doctor was so startled when he saw the dramatic increase in the size of the growth that he rolled his chair way from Jon as though he had the plague. Yet, despite Jon’s catalog of diseases, there was little coordination among his various specialists. Patients are left to navigate the confusing world of medical treatment and health insurance on their own, and almost always at a time when they are ill-equipped to do so. The stress from being sick, facing one’s mortality, missing work, not having enough money for the drugs you need, and then discovering the drugs you were prescribed not only made things worse, but also reduced the days you have left on the planet. It's no way to live while you're dying.

Jon’s multiple medical conditions resulted in his doctors shifting from one treatment to another. Some of the drugs helped one condition, but aggravated others, and lowered his immune system. Was the cancer the result of drugs for his ulcerative proctitis suppressing his already compromised immune system due to his celiac disease? Should Jon have insisted on having the growth removed as soon as it was noticed? Was that even presented to him as an option from a medical community adverse to invasive procedures unless absolutely necessary? Unfortunately, by the time it was "absolutely necessary" for Jon, it was too late.

A May 19, 2019, article in Forbes, “Doctoring the Doctor Shortage,” reports on the decrease of physicians available to treat an increasing U.S. population. The American Association of Medical Colleges predicts a dearth of 120,000 physicians by 2030. As the shortage grows, the number of patients per doctor increases and less time is available to review medical records and coordinate efforts with other doctors. More importantly, however, less time is spent with the patients and time-consuming operations may be postponed until non-invasive treatments have been exhausted.

Anyone who has endured a journey through the medical system knows that advice, treatment, and recommendations can vary from doctor to doctor. Looking for a cause to Jon’s various medical conditions, and the cancer itself, we are only left with questions. There are countless variables that could have contributed to his death, and it may have not been just one cause. We consume heavily processed foods in mass quantities filled with chemicals. Until 1979, cancer-causing PCBs were used in the electrical transformers on top utility poles in every neighborhood and Jon was of the last generation of children exposed to them. Though the evidence is not conclusive, could it have been radiofrequency radiation from cell phones? How many of us talk with our phones right in front of our faces, exactly where Jon’s cancer developed? Was it an unrelated genetic predisposition that was just somehow triggered?

In another fifty years, quantum computing and artificial intelligence, in combination with more advanced genetic testing, may provide us with the ability to fully analyze our bodies down to the molecular level. There would be no equivocation about whether Jon’s small growth was cancerous or how bad it would get. In that time, medical technology may advance to the point that removing that small growth in Jon’s nose will be considered a minimally invasive outpatient procedure. Those fifty years, however, may as well be 1,000 years away for it all the good it will those of us reading this now and reflecting on how it could have helped a loved one that is no longer with us just intensifies our grief.
Image 2: Jon Spiller, shortly before his death (by permission of his family).
At the end of his life, the cancer ravaged Jon’s face (see image 2) and towards the end left him about 50 pounds lighter, blind, and as helpless as he was when first brought into this world. I was hesitant to include his picture, but that was the reality Jon had to face and to fully appreciate his strength of character we must gaze upon it as well. What do you feel? Fear? Compassion? Look closer and in your reaction you will see your own reflection. It is during these long illnesses that we have to face our own mortality. During those times our character, and all that we learned and loved, is tested. It is not just a picture of Jon Spiller — it is a mirror. In it, we see ourselves.

I attended Jon’s memorial service. Several dozen people slowly filled the room. Old acquaintances greeted each other in hushed tones. One of Jon’s nephews, a talented guitar player, strummed quietly for his cousins, but declined the push to perform. As the speakers shared their memories of Jon’s life, a heart-rendering anxiety hung in the air over all of us, like the Sword of Damocles. I was reminded of the ancient Roman tombstone epitaph: “Where you are now, I once was. Where I am now, you will be.”

Cyber Afterlife

According to Oxford University, by 2070 the number of dead Facebook users is likely to exceed the number of living users. By 2100, approximately 1.4 billion of the current estimated 2.27 billion users will have died. I have known several Facebook users who have passed. One young man I knew, a fellow teacher, died of a heroin overdose. No one knew of his addiction. The last post on his Facebook page is the picture of a solar panel system he installed. People can still post on his page years after his death, though none have. The Facebook page of another friend, who also passed away of cancer, is filled with travel photos, birthday well-wishes, and then farewells from family and friends, even in the months after her death.

While Facebook gets its fair share of criticism, for many of us it will be the sole record of our existence on Earth. Family photos will get lost or destroyed. Government and medical records are buried deep behind layers of security. Nevertheless, even if Facebook closes down, the pages will still be available somewhere in cyberspace. Imagine if we had access to the equivalent of Facebook for the ancient world. Not only could we learn so much of those civilizations, but the individual struggles and dreams of millions of people would not have been lost to time. Every post and comment becomes our legacy to the future.

Jon’s final post on Facebook is an updated profile picture (see image 1) dated September 22, 2014 — ironically, just eight days after my mother’s death and eight months before his own. He looks out into the camera. His full, open, friendly face has a slight smile.

It is full of hope.