The images flicker through my memory as half-remembered snatches of youth, a childhood where my church hall was television and my icons were superheroes crushed by fate and rebuilt by mad science.
"I can't hold her, she's breaking up, she's break --"
"Dr. David Banner, searching for a way to tap into the hidden strengths that all human have. Then an accidental overdose of gamma radiation alters his body chemistry ...
"The television screen is the retina of the mind's eye."
I get circumspective about my son's cancer roughly three times a year: in May, around the diagnosis anniversary, when we discovered stage-4 neuroblastoma at the age of 2; in late November, remembering the deep dark days of stem cell transplant; and in September, which kicked off the hardest three months of my son's cancer treatments and is also Childhood Cancer Awareness Month. And when I get circumspective, I get writing.
In the late 1970s and early 1980s, body horror took hold in the popular consciousness, even if sometimes people didn't really think of it as body horror. The concept of one's own flesh turning against them, warping in the wake of forces not entirely understood. On TV, the likes of "The Six Million Dollar Man" or "The Incredible Hulk" delved deep into the subconscious fear of the body torn apart and reassembled, sometimes by the very same aspects of science, week in and week out.
Carefully edited opening credit sequences, iconic to this day, drive home the isolation of a living body balanced precariously on the absolute edge of human experience. If you are a child of a certain era you remember the red radar as Steve Austin's test plane took flight, the grimly sterile operating theater where he was rebuilt, the slow steady tension as Dr. David Banner aims a gamma-radiation crosshairs at his own skull and changes his own world. It is not coincidence that these opening sequences had tremendous medical overtones. And over in the film world, movies like "Videodrome," "The Fly" and "Altered States" envision science run amok, or even the very concept of media itself, blasting human existence through a shattered funhouse mirror.
"Gentlemen, we can rebuild him ..."
"when David Banner grows angry or outraged, a startling metamorphosis occurs."
Your reality is already half video hallucination. If you're not careful, it will become total hallucination."
"Long live the new flesh."
In the reordered reality of body horror, anything is possible. The definition of humanity becomes clay in the hands of whatever fates we happen to believe in. Becoming something new. Less than human. Beyond human. More human than human. Human-plus, until something goes awry.
I feel a vague sense of dread, never able to verbalized or explain it, every time I watch these opening sequences a a kid, Steve Austin's lifting body dropping into the abyss, Dr. Banner's crosshairs, and I know as a viewer, much more than either of those two characters whose lives are about to change in an instant, that they have no idea how bad it is going to get ...
"Better. Stronger. Faster."
" ... you wouldn't like me when I'm angry."
"We're entering savage new times, and we're going to have to be pure and direct and strong, if we're going to survive them."
"The most terrifying experiment in the history of science is out of control ..."
In the dream the sky is red. I'm climbing a mesa, one of many tall stone monoliths laid out in labyrinthine pattern across a desolate landscape. Against a blood red sky, beneath an all-encroaching darkness as it rotates larger and larger, drawing all things into itself, the inner decay, the end of all things. It is selfishness and greed given physical form, and it will consume everything I love and I have no idea how bad it can get and there is nothing I can do to stop it and I have sworn to devote myself to fighting it.
It's an idealistic image, of course. I'm 10, maybe 11, and I experience my religious beliefs as filtered through the lens of pop culture, an overactive imagination, and a child's need to believe in something more. That gnawing shadow, the end of everything I think I know, the end of history. All very melodramatic. The image recurred throughout my teen years, sometimes experienced as a dream, sometimes as a lucid waking dream, sometimes just idle daily thoughts. I mean, weâre all the heroes of our own stories, right? I wanted to be the hero, I wanted to be something meaningful, I wanted to believe I was part of something so much bigger than myself.
As I grew older I came to recognize it as the melodramatic musings of the mind of a young man desperately seeking evidence that his place in life was so much bigger than it actually was. Catholic teachings fed that hunger with a hearty diet of symbolism, and pop culture fueled it even more. In later years, when I drifted away from the church, I recognized the entire vision as childish yearning and put it aside, thinking myself older and wiser.
Except it's all real. And if this one the I learned from countless comic book stories of time travel, it is that the fine print of visions should be studied with great care and their literal implications thoroughly considered ...
... It is selfishness and greed given flesh, unbridled desire to consume all in its path to forward it's own existence, given physical form to consume all I loved ...
Twenty-five years later I am looking at a computer screen -- the retina of the mind's eye -- and I am watching a live-action MRI scan, seeing in real time this ancient enemy I had long ago forgotten even existed. A gray shadow rotating over a landscape shaped like a human abdomen. I was face to face with it at last, selfishness given flesh, it was going to consume everything I loved and there was nothing I could do to stop it. And at last, far too late, I understand exactly how bad things can get. It is Steve Austin's test pilot crash, it is Dr. Banner's radiation overdose, it is eleven by seventeen by eighteen centimeters and it is literally eating my son from inside out. It is that cataclysmic body horror in the most literal sense. It is a marching unforgiving army intent on turning everything in its path into a copy of itself and I knew, at last, there was nothing I could do to stop it.
I have a different dream now, five years later.
In the dream he stands silhouetted against the encroaching monster in the blood red sky, all that's left in the fight, a thin black line separating my world from that invader carrying with it one of the ghastliest ends nature has yet devised for mankind. I'm not the hero. I'm watching in real time hoping, praying that this time the story has a different ending for a hero I never saw coming.
If he was to survive, he had to become something greater than he was before, leaving behind much of his previous self in the process. Most of his physical body is intact, though it perhaps came closer to being legless over this whole thing than I would care to admit. The internal losses are staggering. He is a literal cyborg with stents replacing missing segments of adrenal gland, electronically amplified hearing, and genetically engineered mutant chimeric antibodies swimming through his blood stream, all at a price tag not close to six million dollars but a lot higher than most of us would like to think about. Disassembled and rebuilt from the inside out, the very core of his bones scooped out and replaced by stem-cell science that borders on magic itself. Better, stronger, faster, pure and direct and strong to survive savage new times. Human plus.
He became something new. In every way I should think of him as something weaker -- every part of his body impacted, from his ears to his teeth to his toes, some more than others, lifelong vulnerability to diseases most parents never have to think about, the ever-present threat of the original cancer one day roaring back or secondary cancers inevitably creeping in.
But I don't. Because he survived. Because he is the epitome of adaptation in the face of the unthinkable, because some parts of his body may be weaker but other parts are supercharged. The threat of cancer may never leave but neither will the supercharged mutant chimeric blood cells endlessly swimming his veins seeking out and eradicating the slightest hint of resurgent neuroblastoma.
He received gamma radiation as part of his treatment. I always laugh at that. I laugh somewhat less so at the extent to which the actual application of radiation, aimed at crosshairs painted directly on his abdomen, resembled Dr. Banner's experiment gone awry. He is irradiated like the fictional Hulk. He is mostly deaf like the real-life Hulk, Lou Ferrigno. The irony of all this is not lost on me.
Contractually obligated disclaimer: I assure you it all sounds very dramatic when put this way, but at the time it just SUCKS. It's difficult to describe in any meaningful way, even with metaphor. The English language lacks the capacity to describe how awful it really IS; "terminal cancer" is the yardstick by which we measure how awful other things are. The emperor of all maladies, the inner decay, all these words pale next to that one. Cancer. But metaphor makes it easier to endure; the hero climbing the mountain against an unstoppable foe is a more pleasant image than countless months of his tiny body subjected to things so awful that they'd get you tried for war crimes if you did them to a member of Al-Qaeda. In direct, literal memory, he looks so small and weak, but knowing what was actually happening, what he was actually DOING, he is anything but. The hero metaphor may not be accurate, but it is true.
I am not the hero of this story. I am a small child watching television seeing other heroes play out impossible tasks. He is not the hero I imagined, he is not the hero I expected, he is certainly not the hero I deserve, but he may well be the hero we all need. One of the most amazing parts of my son's story is how much strength it has given other people, the extent to which his sheer unbridled will to survive has driven people who never met him to try to become better, stronger, faster themselves.
The body horror was invading and there was nothing in the world I could do to stop this thing. But it was never my job to do it anyway. All I could do was cheer along someone who could.
Long live the new flesh.
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Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.