Spectacular

About the zombies, Michael…

…no, first, Momma Bear with her lovely gourmet chocolate chip and oatmeal cookies, camouflage for the fierce, primal mother-love fire-breathing force in endless battle for her Mike: not Karen, but Mike’s Mom, clearly identified, tenderly cleaning, bathing, feeding her son to the quietly hissing cadence of his ventilator, simultaneously waging campaigns for public and bureaucratic compassion and action, hammering the e-walls from the Florida Governor’s mansion to the Oval Office and network television until they came outside their shells to see, and meet and acknowledge her Mike…

...and every person with a disability - and their families and caregivers - for whom life is a constantly fleeting presence; liberty is fleeting sleep in a 24/7/365 regime of care; and the pursuit of happiness is a fleeting second of cessation of pain, savoured laughter at anything that lifts this permanent veil of mortality that shrouds all who live on this ruthless razor’s edge between the quick and the dead.

17th March 2009: Karen’s call for help came round the planet from Tampa to Sydney: “my Mike can’t communicate”. Jet SYD to LAX to TPA, cab to the house, and first sight of Mike’s Mom, the welcoming cookies, then into Mike’s bedroom, fitted out like a battle star.

He was already a rock star in the cyberworld that we geeks blend with reality: the interface between us carbon-based biologicals and the digital tools that were designed to control computers and phones and networks and spacecraft, but which have since the early ’80’s also been recruited to help people who cannot move or speak, to reconnect with the world, and designated as Assistive Technology (AT).

Mike’s spinal muscular atrophy (SMA) had since childhood steadily slowed his growth and shut down his neuromuscular functions until he could no longer move or speak, restricting him to the flexing of one thumb, which he flicked at phenomenally accurate speed a quarter inch from a proximity switch that turned his staccato movements into commands to his Apple computer, and in turn to a speech generator named Graham with a posh English accent, and on to applications that enabled him to play games - he was a champion at World of Warcraft (WoW) - write his blog, lithiumcreations - a tribute to Kurt Cobain’s early hit - email and text friends around the world, play his constant faves Nirvana, Aimee Mann, Elliott Smith and Tori Amos, contribute chapters to several books, work on his own novel, write slam poetry, create with his computer-controlled camera, and hang with some serious icons…

… he interviewed Steve Jobs, and was an Apple Ambassador and an elite AppleMaster; featured in an episode of “This American Life” with Ira Glass, called “Escape” with Mike’s text voiced over by Johnny Depp (“because,” Mike wrote, “he is so bad*****”; and starred in the AssistiveWare documentary, “One Thumb to Rule Them All”… became buds with and photographed David Letterman, did articles with the heads of leading gaming companies, and wrote to Stephen Hawking recommending he use NeuroSwitch, the forerunner to NeuroNode. [Ed.note: Mike would have hated the asterisks]

Mike’s Mom had emailed me that March because a doctor had taken a blood draw near the same neuromuscular pathway that enabled Mike to control that one vital, ruling thumb, and shut it down - silence, no more text, no more Graham’s posh voice: battle stations.

The first time I walked into his room, the first things I saw were an open MacBook Pro suspended above his bed, cabled into a huge computer monitor up on one wall flicking through photos of gorgeous Renaissance artworks, and connected by other cables to his sound system and the proximity switching device that he could no longer use.

Mike’s body seemed to have stopped growing when he was about 10, though the day we met, he was 29, lean, watchful, lying on his side under a blanket, stemless eyeglasses balanced on his nose, beneath black hair and sharp eyes scanning the screens. His hands were clawed up with paralysis, and covered with tattooed script that scrawled up his arms and out of sight. Cables ran to devices, and a ventilator hose ran from the sighing electric pump feeding air into the tracheostomy wound in his throat, keeping him alive. His only controllable movement was in his eyes, eyebrows and less mobile mouth, but from that first moment, there was an ineludible sense of his exceptional intelligence.

By then, he had 19 tattoos over his body, his living canvas for critical clips of lyrics from Nirvana and cartoons denoting the way he viewed life and death: as if he chose to denounce mortality as clearly and harshly as he judged anything that did not meet his supreme standards, including his own behaviour.

He listened to the details of NeuroSwitch, designed to pick up the tiny electrical signals inside a muscle - even if it wasn’t properly functional - through clinical sensors adhered to the skin. Those signals could do the same things as the passing of his thumb near the proximity switch - but faster, and more accurately.

Mike’s Mom was helping him communicate by verbally splitting the alphabet into halves, “A to M, N to Z” and he would raise his eyebrows when she named the half that contained the letter he wanted to choose, and by halving that half, again and again, she arrived at the consonant or vowel he wanted to spell, then they started all over again, to find the second letter by which time she could, with maternal instinct honed over decades, generally predict the word he wanted to choose.

In this way, she could construct his sentences and say them aloud. It was laborious, made tolerable by his situation and her Momma Bear relentless loving care. Without his thumb switch it was all they had, but it was unsustainable for a mind as fast as his, and so much for her to do every waking minute.

“Cylons,” he signalled through his Mom, scything through the alphabet after he listened to my description. “Yes,” I said. “BSG,” for Battlestar Galactica, the massively successful TV series of the deep space war between human astronauts and the descendants of cybernetic creatures, now evolved into humanlike form called Cylons.

“Ready to go bionic, then?”

He blinked for, “Yes”…

... and so we began. NeuroSwitch ran on a Microsoft laptop - a compromise I’d made after several years of coding for a US government lab on the first Apples, because PCs were cheaper. Michael refused to compromise - so I recoded everything to run on a MacBook Pro with its slicker operating system, OS X.

James Schorey, the President and chief computer scientist at Therapeutic Alliances Inc - which made the NeuroEDUCATOR EMG monitor that captured the neuroelectric signals inside a muscle - rebuilt the unit to be smaller and run Bluetooth (BT), ditching the cables.

The first day we launched NeuroSwitch with James’s new BT unit, Michael used the EMG signals in his forehead, captured through a sensor patch above his right eye, to text onto his big screen, spoken aloud in Graham’s posh, measured accent, “We are totally OS X native, with f***ing bluetooth! This is so bad*****! Seriously, this is amazing! I’m a little giddy…”

“Mike never swore when he could speak,” Karen said. “He only started after he began using AT.” Cool.

There followed several years of evolution of NeuroSwitch, frequently modified to meet Michael’s uncompromising demands. He never gave an inch, to us or to himself. He never acted as though he had to be polite or hold back because he needed someone else to assist him. The fact that we provided all the AT gratis had no effect on him: if it didn’t meet his needs, he let us know. He was so fast that I had to code the version of NeuroSwitch he used uniquely to suit his switching speed. For all that, James and I learned a great deal about what the AT needed to do for everyone with a disability, once it met Mike’s rigid standards.

Like so many people with severe disabilities, he learned to command a room purely with his presence. I asked Matthew Rex Downham, a digital artist for Disney, to morph our Control Bionics “Sighead” logo into a cylon-esque icon to launch Mike’s version of NeuroSwitch.

Mike’s supreme compliment, “Spectacular” was rare, high praise you learned to work for.

He gave it out sparely, and made it an overwhelmingly happy reward. He was and remained the fastest NeuroSwitch user: with our small neuroelectric sensor patch on his forehead, he ran his home environmental controls, his blog, his music, his movies… he used it to edit videos, including one showing himself playing - and winning - World of Warcraft.

In 2012, Anybots execs, David Rogan and Bill Murvihill in Palo Alto, let Mike patch into one of their telepresence robots, from his bed in Tampa, 3,000 miles away, using NeuroSwitch to drive it around their factory floor in Silicon Valley. He could see on his computer everything from the robot’s camera. I patched in from Sydney into a second Anybots robot in Palo Alto, with my own NeuroSwitch, and we raced each other around the factory floor. Next day, Mike blogged on his site how he smoked my bot. Killer. Then he did a seriously cool video with us, controlling an Anybots with his NeuroSwitch to do Icebucket 2.0, Rise of the Robots.

He was as tough on himself as on anyone, especially about his writing. But for all the stringent standards he demanded of himself and of all of us who worked with him, whether he was elated or deeply depressed existentially, I have never - in more than a decade - heard him complain about his physical condition: about having his massive intellect confined to a body that barely moved, that needed a potentially-fatal tracheostomy change once a month, that left him needing every function supported by another person.

That soaring mind that he used to connect with the world, hovered inches above the constant wound in his throat where the life-preserving ventilator sighed away day and night, reminding him of the thin edge of survival he inhabited, that led him down dark pathways of introspection, into the 12 gauge territory of Kurt Cobain, and the end run of Elliot Smith, their dystopic lyrics constantly coding the soundtrack of his life.

Countless times, his perilous condition took him to the brink of death, dropping into darkness and reeling back as emergency teams fought to save him.

Somewhere around Tattoo #86, he chose to have a line from Aimee Mann’s Lost in Space imprinted on his skin, “… and I am pretending to care, when I’m not even there… gone, but I don’t know where.”

Michael Phillips
Photo originally posted on Mike’s Blog

Tattoo by Doc Dog’s Las Vegas Tattoo
Photo originally posted on Mike’s Blog

Death was the constant companion he chose to live with in a combination of humour and contempt: so, the zombies.

Nothing was as shocking, or ridiculous as their constant undead presence in his life, from the movies on his big screen to his choice of “Zombie Club Girl” as his halloween outfit, with heavy drag makeup and copious fake blood, an ultimate WTF to an existence in which he had deeply loved a number of women for whom he wrote poetry, and imagined pure romantic greatness as heroic as any great, erudite, eloquent lover, while living intellectually as far beyond his physical limits as any human.

We exchanged hundreds of emails and text messages over the decade, about our AT code and evolving technology, but also about the nature of existence, and the darkness that frequently descends on writers we both jointly or separately admired: Whitman, Hemingway, Ruark, Bronte, HS Thompson, Anthony Burgess, Kundera, Caitlin R Kiernan, Faulkner, Ann Rule. He wrote deeply thoughtful critiques, analyzing style and structure with professional acuity.

In his blog, he wrote in 2016 about the nature of us biologicals: “The thing is, when you’re writing about human frailty, insanity, loss, magic, beings who were around to see the sun blink on, sometimes there just aren’t answers. Some things are simply unknowable.”

Mike’s Mom was with him that last night when an aneurism - that had lived in his throat just along from the live wound of his tracheostomy like a quietly ticking time-bomb for so many years - exploded in a flood of blood. His last awareness was of her Momma Bear presence, calling for help, holding him as his life escaped for the last time. The ER doctors said it was unavoidable, instant and painless.

Some may say it is delusional to resort to afterlife cliches: from religion to the digital uploads to a BSG base-ship that enables Cylons to reincarnate. But it is certainly - as Hemingway wrote - “pretty to think so” that he might be out there now, travelling free and untrammeled, with the likes of Cobain, and Smith and Hawking, challenging the continuity of our intellect, our identity, the essence of what each of us represents in our mysterious existence, physical and otherwise.

Imagine him now, effortlessly crossing those barriers, an enduring presence for Momma Bear as she continues her fight at home for all people with disabilities, and travelling far beyond the carbon-based biological boundaries that still confine all of us who continue to live.

Imagine his last word echoing, as he heads beyond the shrouds to the unknown country we’re all bound for… … “Spectacular.”

Peter S Ford, Founder and President, Innovation

Original Control Bionics “Sighead”

Matthew Rex Downham’s morphed cylonesque “Sig-hed”

Karen with Vice President Joe Biden in March 2011

(NeuroEDUCATOR® and NeuroSwitch® and NeuroNode® are trademarks of Control Bionics Inc.)