Disability & Space-Time Considerations:
On reading Gary Zukov’s The Dancing Wu Li Masters
Of quantum physics, Einstein remarked, God does not play dice, by which he meant the appearance of randomness is always an illusion. Scientific analysis must yield law, rules, properties. Other physicists disagree in an ongoing theoretical contest pitting Einstein’s classical determinism against quantum randomness. No victor has yet emerged: unity or scatter?
I thought of that debate after I dropped Robert off at his inclusive theater class. One Boy. The sun was shining, construction ongoing, tall buildings sending steel beams into the sky. I’d been reading The Dancing Wu Li Masters on quantum physics while drinking my morning coffee. Something about imagining the scale of atomic parts. Something about the nucleus of an atom as a grain of sand inside a 14-story building, the building mostly empty, a handful of electrons—smaller still than that grain of sand—whirring from floor to floor, just as they do among multiple atomic orbits.
Although electrons jump between floors (their atomic orbits), excited and turned on by whatever energy is applied to them, we cannot see them. Yet they leave traces of themselves, “light fingerprints,” in the wavelengths of light around us. These can be measured, but we can’t know which electrons will jump to which orbit or why. We can only calculate the probability of knowing, which is how quantum physics imagines a world: explicable by mathematics as a language, not a measure of absolute knowledge.
That science might not be impregnable after all, rigidly absolute, gives me hope. If the world were absolute, then One Boy wouldn’t matter. Literally. As an anomaly, nothing to him would accrue. And yet he assembled himself within me, taking up space and gaining mass (the scientific definition of matter), a footprint pressed in bas relief against my abdominal skin. A genetic anthology of family lore we vowed to raise as an individual. Let him be whomever he would be. Our boy: he mattered to me.
God may not throw dice, but some force in the universe does—to that I can attest. My son has two genetic defects which revealed themselves, suddenly, just after he turned one. For fourteen years, his disabilities remained unexplained. Before Robert was born, scientists of the Human Genome Project had begun mapping our species’ DNA structure and variants, all three billion nucleotides. They finished in 2003.
In 2012, Robert’s genomic analysis showed one mutation inherited from me, the other de novo, unreported or entirely new. A transcription error during gamete replication, perhaps. A silent ping from a heretofore unknown genomic universe. A one in three billion chance happening, his geneticist said of my son, a roll of the conceptual dice.
Peter Higgs first theorized the Higgs bosun, the “god particle,” in 1964, the year I was born. This subatomic particle, elusive, lacking quantitative measurements to prove its existence, marks the point at which matter, well, matters. To it, other particles accrue and the world takes shape around it. The Higgs bosun only appears to us as it emerges from destruction (literally), and from there, the world we know may be assembled as atoms, molecules, deoxyribose nucleic acid, cells, bacteria, eukaryotes, multicellular organisms. Molecules, elements, electronic forces, hammers, screws, machines, buildings. From many, one: from one, many.
One Boy has an uneasy glow. Why does one person matter? One person with as unique a biochemical profile as anyone might imagine. Or not. Robert is, of course, more like any of us than he is different. Only two errors among the three billion nucleotides of his genome. He has two arms, hands, legs, feet—although he cannot make them perform, as the social workers say, any of the activities of daily living. He has no language, yet leaves traces of himself in the light around him: subtle movements of one arm for yes and the other for no; smiles, laughter, tears, his pointed looks. His eyes activate word and phrase icons using a special camera attached to a computer.
One day he’ll form sentences, immeasurable, interpretable, if not absolute. By what measure are we known to any one, any other?
I can’t explain why one person matters. Perhaps an explanation doesn’t exist. The quanta in quantum physics simply assume a measurement for the unknown and undefinable exists. In one version of the universe, for every bit of matter, there’s an equal and opposite bit of anti-matter, dark matter. As One Boy moves through space-time, how do the particles of society react to him, how does he gather support? From the draw of recognition (a positive charge) or the simultaneous push and pull of a negative charge, a distancing empathy? His beauty and smile draw admirers toward him; from his speechlessness they wander away.
Physicists push and pull over two theories of the universe: Super Symmetry or the Multiverse. The familiar harmony of the poets sings forth in Super Symmetry, in which all is balanced, ordered, beautiful. The Multiverse posits innumerable universes, each with its own laws of physics—disorder, chaos, in which beauty implodes into particle randomness, like nucleotides. Raised to believe in beauty and order, I find the inexplicable has come to appeal to me, too.
My boy’s tracheostomy and gastrostomy stomas are symmetrical, but his wheelchair constantly loses screws. People speculate he suffers, but his eyes connect indubitably to you. Medically fragile, he needs us to clear his airway, feed him through a tube.
The Higgs bosun matters because it is unstable—the point of destruction at which all matter accrues, Higgs gives its being so that other particles may have mass. A messiah? Perhaps Lord Shiva instead. A creator and destroyer all-in-one, so the theory goes, this “god” particle might become visible only when speed and force recreate conditions of the Big Bang, the moment of universal conception.
And so the Large Hadron Collider was constructed over a period of ten years, from 1998, the year Robert became disabled, to 2008. In 2012, the year Robert was diagnosed, the LHC proved the existence of the Higgs bosun. The numerical value of the Higgs, physicists hoped, would prove whether the universe conformed to the laws of Super Symmetry, or rebelled in the form of a Multiverse.
Its only measurements mathematical—waves and points and digits—thus far, the Higgs numerical value sits, taunting, in between symmetry and chaos. Between repetition and the unexpected.
We searched fourteen years for a diagnosis, test after test, none mattered. But we wanted to know. Genomic sequencing became our antimatter: Dystonia 16, a disease so rare Robert became the only US case among nine worldwide. Each of us has hundreds of genomic variants, so why did his two matter?
Let there be anomalies within anomalies, as long as we may find something to know. For every theory there’s an outlier, something that cannot be predicted or understood. In any symmetrical system, can One Boy be more than negligible? Could a multiverse contain us all, each and every One?
We don’t see answers; we can’t. Only know that particles leave traces in wavelengths of light—it may not matter why. Mass can accrue from the instability of what surrounds it—he’s still human and still here. Antithesis. Antimatter. One Boy.
Jeneva Burroughs Stone has published poetry and essays in many literary journals. Her work in nonfiction has been honored with fellowships from the MacDowell and Millay Colonies. She holds an MFA from the Warren Wilson Program for Writers, a PhD from Columbia University, and a BA from Middlebury College. She is a contributing editor to Pentimento: Journal of All Things Disability, which is dedicated to promoting the voices of caregivers and writers with disabilities. “Disability & Space-Time Considerations” is adapted from Monster, a collection of poetry and essays, which is her first book.
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Stuart Burroughs says
A remarkable piece from the heart. So looking forward to reading the entire work.
Terri Buri says
Masterfully written and putting into words the importance of each human. Your strength and enduring wisdom through helping Robert is and has been terrific and an incredible testament to the power of love. I applaud you soo much and am so glad we met at the very beginning of both of our families’ journeys! I can’t wait to read the rest of your first book!