ALS took his voice. A brain implant helped him speak to his daughter again

At the darkest point of his life, Casey Harrell found a kind of magic.

It was the summer of 2023, and Harrell, then 45 and living in Oakland, was battling amyotrophic lateral sclerosis, or ALS. The neurodegenerative disease eats away at a person's muscles, and for Harrell, the devastation was quick and unsparing. He had already lost the ability to mount a bicycle, pick up his daughter or get out of bed on his own. Now Harrell's voice was breaking down, making each sentence an impossible contortion.

Then a cousin referred them to a clinical trial at UC Davis. The idea sounded bold. Researchers were developing a "brain-computer interface" to analyze signals in the mind, then use artificial intelligence to predict what a patient was directing his failing speech muscles to say.

To meld mind and machine, doctors would embed sensors in Harrell's brain and run a cable to a computer, letting him speak in a computer-generated voice trained on recordings of him. For Harrell, it meant recapturing the person he used to be: a workaholic climate activist who adored his wife and sang Raffi songs to his daughter. Beyond that, he saw the opportunity to be patient zero, to help refine the tool so others could use it.

Right away, Harrell sensed the power of the brain-computer technology. He also grasped the broader societal risks.

Techno-futurists talk about this concept as a way to optimize humanity, and Silicon Valley titans, including Sam Altman and Elon Musk, are already vying to take brain computing to the mass market. They see uses apart from medicine, such as immersive video games, enhancement of worker productivity or "hands-free" driving. Startups frequently demo brain-computer headsets and ear buds at the Consumer Electronics Show in Las Vegas. Curious onlookers who tested the gadgetry in 2020 were able to control a lamp from their chairs, wielding the enchantment with no invasive surgery. Altman's venture, Merge Labs, seeks to use gene therapy and ultrasound to monitor brain activity.

Perhaps it's inevitable that any great medical innovation will eventually be captured for commercial interests. But Harrell wanted none of that. His life had always been anchored by a sense of moral clarity. As an environmentalist for groups like Greenpeace and the Sunrise Project, he ran campaigns aimed at persuading Wall Street executives to divest from fossil fuels, and once attempted a citizen's arrest of the head of a petrochemical company. When he married fellow organizer Levana Saxon, the couple felt compelled to express their reservations about "heteronormative patriarchy," gathering friends the night before their wedding to write down outdated notions of marriage on slips of paper (such as, "I get free labor out of this") and throw them into a bonfire.

So when Harrell signed on for the BrainGate 2.0 project, he viewed his role not merely as a test case, but as a laboratory partner who would grind away to improve the technology. Over time his brain would spawn a whole corpus of research that could be used to help people like him.

And of course there was his family. The doctors who diagnosed Harrell with ALS in 2020 had given him two years to live, a prognosis he continued to defy. But once his speech became garbled he struggled to communicate with his daughter Aya, who was then a spirited toddler. He watched helplessly whenever Aya tumbled off furniture and burst into tears, unable to offer comfort or call for help. He felt trapped, wanting to be an active parent, or to at least say "I love you," though he couldn't articulate the words.

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On the morning of July 17, 2023, Saxon woke up in her Sacramento hotel room with a spasm of fear, and slipped into instant "flight attendant" mode. It's a skill she developed after her husband's body started failing: Plaster on a smile and project optimism no matter what.

She had plenty of reasons to be nervous. Harrell had just been admitted to UC Davis Medical Center in Sacramento, where doctors were rolling him onto a gurney. There was a packed house in the operating room. Medical experts had flown in from out of state and a film crew was rolling.

Harrell's medical team had rehearsed, over and over, the delicate procedure to plant 256 electrodes in the region of Harrell's brain that manages speech. They used brain scans to create a Jell-O mold that enabled Dr. David Brandman, co-director of the UC Davis Neuroprosthetics Lab, to practice the incision he would make in Harrell's skull. This was science that had the fragility of fine art: The electrodes were bundled in 3.2-by-3.2 millimeter squares, barely visible to the eye.

While Harrell lay on the operating table, Saxon, Aya and a few relatives sat by the pool at a hotel across the street. Hours rolled by, and Saxon nervously checked her phone. She considered every potential calamity, fixating mostly on one. Harrell would need to be intubated, and with his ALS, removing the tube could cause breathing complications.

But if the implant succeeded, Harrell's brain would connect to an intricate, high-tech apparatus. The electrodes would record neural cell activity, translating that information into "phonemes," or building blocks of words, which would clue the AI to his intended speech. Both Harrell and Saxon were fascinated by the mechanics. They knew the result could be staggering.

Neuroscientists had done versions of this procedure before. The first implant was performed in 2006, when doctors placed electrodes in the brain of a man with paralysis who learned to move a cursor with his mind. In subsequent trials, doctors placed electrodes in various areas of people's brains and targeted them for different tasks, like decoding the patient's attempts at handwriting.

"It started with, ‘Can we move cursors? ' then evolved to ‘Can we move robot arms? '" said Sergey Stavisky, who runs the Neuroprosthetics Lab with Brandman and is helping lead the BrainGate project. The question before them now was whether an implant be used for accurate, naturalistic speech - smoother than the synthesizer and robot voice that Stephen Hawking employed in the 1990s, or the assistive devices used by many ALS patients today, which rely on eye tracking or mouth movements rather than brain signals.

Recovery from the implant surgery was rough for Harrell. He coughed uncontrollably, stayed in intensive care for five days, and went home not knowing what would happen. Weeks passed before Brandman called to say he was ready to test the software. He had warned Saxon and Harrell to manage their expectations.

Even so, Brandman and Stavisky brought a film crew with them to the couple's Lake Merritt apartment. They needed to prepare for the small possibility of something amazing.

"It was definitely a fraught moment," Stavisky recalled. "We do our best with the surgery. But there is a little uncertainty. Are the electrode arrays in the right part of the brain? Do they get good signals? Are all the wires still connected? Things can go wrong."

They wheeled Harrell over to a flatscreen monitor in the living room. Brandman linked two cables into pedestals he had attached to the top of Harrell's head. Nearby, another set of computers displayed a grid of boxes, logging the activity of all 256 electrodes. Everything seemed to be functioning. The researchers shared a look that felt, to Stavisky, like a silent high-five.

A sentence emerged on Harrell's monitor, and Brandman asked him to read it.

"What good is that?" the sentence read. Harrell moved his mouth to form the question.

"What … good … ." As his mind spoke the words, and his mouth shaped them, they crystallized on the screen. A look of astonishment passed over Harrell's face, followed by a broad smile. He wept.

"I didn't understand at the time that Brandman had been building up to that moment for his entire career," Saxon said. "He spent 16 years doing doctoral work to create what is now there in Casey's head."

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That was the first time Harrell ever "plugged into the matrix," as he calls it. Two days later the team returned, this time asking their research subject to articulate his own thoughts. Harrell turned to Aya, who was dressed in a cheetah onesie.

"I'm looking for a cheetah," he said, and the words materialized. Another silent high-five.

Today Harrell is widely regarded as BrainGate's first super user. He connects from a bedroom desk that has the feel of a command center, with a cart of computers and three monitors that display neuro signals. An additional monitor bears the contents of Harrell's personal computer - often the YouTube homepage or a meticulously organized Google calendar. Another, positioned directly in front of his face, serves as an AI stenographer. One of Harrell's ongoing quests is to make the machinery more portable.

"The feeling of bliss when I got it to work was utterly phenomenal," he recalled in an email dictated with the software. After the initial high, Harrell noted, it became somewhat aggravating to have a group of researchers in his living room "when I was talking with my wife."

Though Harrell's body is placid, strapped in a wheelchair with IV bags and oxygen equipment, his mind is a ball of kinetic energy. Stream-of-consciousness paragraphs roll across the computer screen, while infrared sensors on the bottom panel allow him to drag a mouse cursor with his gaze. Harrell edits words by clicking buttons, telling the AI whether it's accurate or needs corrections. When he presses a large green one, his software voice reads the sentences aloud.

It's a multistep process, with a delay that could last more than a minute, from when the sentence spills out on the screen to when the edited version is broadcast. The software version of Casey speaks with an authoritative, NPR-style cadence, gentle and largely without vocal inflection. Every sentence ends in a period. Jokes and sarcastic remarks don't always register.

Still, glints of Harrell's old personality shine through. He's loquacious, always moving faster than the machine can type. His editing process is slower, sometimes lingering over words, always mindful of how they might be interpreted - how the stories written about him will be framed.

"You see? It's amazing," Harrell said on a February afternoon, drawing deep, sucking breaths through an oxygen mask as his prosthetic voice read the words.

Outside his bedroom, the apartment bore signs of a life suspended.

Bike helmets dangle from hooks in the hallways, remnants of a time when Harrell and Saxon would ride to a local bar and order vegan tapas. Jars and cutting boards rest on the kitchen countertops, where Saxon cooked elaborate meals while Harrell carefully measured the ingredients. A framed photograph in the living room shows their joyous hippie wedding in Sebastopol, standing among a giant circle of friends.

Aspects of their marriage had been idyllic: bike rides, long walks, a permaculture garden, pickling vegetables, late nights in bed watching television.

Things started to fray in 2019, before Aya turned one. Harrell began suffering leg tremors and would inexplicably lose balance and fall off his bike, returning home bloodied. He lost the fine motor skills required to type. He insisted, with increasing desperation, that everything was fine. Saxon, who was nursing at the time, had to stay up late at night taking dictation for Harrell's work correspondence, delivering "Casey level productivity" even as he was physically incapable of doing so.

For a while, the couple wrestled with every conceivable explanation. Maybe he was low on magnesium. Middle-aged muscle strain. Too much stress. Did he need a fitness coach? A healthier diet? At one point Harrell tested positive for Lyme disease, so maybe, they thought, he needed a more effective treatment.

It came to Saxon one night in a dream. "There was this voice shouting at me, ‘Lou Gehrig! ' And at the time I didn't even know who he was. I woke up, did a Google search, and immediately slammed my laptop. I said, ‘Oh hell no.'"

She climbed back into bed and tried to forget about it. Years later, the dream haunts her.

"Some part of my subconscious was paying attention," she said. "The rest of me was like, ‘Yeah, that doesn't happen to people like us.'"

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In the research world, Casey Harrell is known by subject name T-15.

Search that term in a database and you might turn up dozens of peer-reviewed papers. There are graduate students and post-docs who come to Harrell and Saxon's apartment multiple times a week to study specific components of Harrell's speech. One is studying how the mouth moves to articulate letters and sounds. Another has figured out how to make brain-to-text emojis based on Harrell's attempts at facial expression.

Three companies dominate the neurotechnology space: Synchron, Neuralink and Paradromics. (Brandman works as the principal investigator for a Paradromics feasibility study.) Each of these early players is racing to develop fully implanted wireless systems to resuscitate speech for stroke victims, people with spinal cord injuries or those with ALS. Musk, who founded Neuralink, promised "high volume production" of brain chips this year and said he would "automate surgical procedure."

Smoking weed and drinking whiskey on Joe Rogan's podcast in 2018, Musk conjured a future in which people could use brain implants to merge with AI and augment their cognition, or improve their memory to the point of cinematic quality. Maybe regular talking could become an obsolete skill, Musk suggested. People could just mind-read.

Visions of AI super-humans strike Brandman as a fanciful and perhaps superficial read of the technology. He and Stavisky both emphasize that brain-computer interfaces cannot channel people's inner thoughts or monologues. They're fighting an uphill battle against social media and all the hype around Neuralink. Many people are already convinced that, within a few years, companies will port advertisements directly into our thoughts. Hackers seeking data wouldn't merely fish in people's computers; they would "brainjack" microchips.

"Look, it's very easy to speculate and say what-ifs, and get into science fiction," Brandman said. "But the reality is that people are suffering right now. And that is what guides me."

By and large, Harrell shares this perspective. Which is why he's become increasingly anxious about the path of a science he helped pioneer. He warns about the prospect of a surveillance state, in which tech companies advertise microchips as a means to bolster your brain or ease your quality of life, and then use the devices to "collect and manipulate data."

"And who is giving consent to have this data collected in the first place?" Harrell asked in what seemed like an agitated tone, firing words onto the computer screen, not bothering to correct typos or prompt the software voice to read.

Saxon looked up from her perch on a bed, where she'd been sitting cross-legged, leafing through papers. Her husband's back was turned toward her, his wheelchair and IV bags obstructing her view of the screen. Yet she had sensed his anger and distress.

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Toward the end of February, Harrell's oxygen levels dropped. He was wracked by sudden, violent coughing fits. Saxon stayed up all night clearing her husband's airways with her fingers and rigging together multiple 5-liter oxygen machines to increase the flow.

Realizing she could no longer manage at home, Saxon brought Harrell to Alta Bates Summit Medical Center in Oakland. Because Harrell has trouble swallowing, bits of food wind up in his lungs and bacteria swarm inside. An infection developed into pneumonia and he spent nearly two weeks in the hospital. Aya temporarily went on independent study after Saxon found she no longer had time for school pick-up and drop-off.

To every extent possible, Saxon and Aya remained by Harrell's side. In the evening, Saxon silenced her phone, tucked Aya into bed and tried not to stay up worrying about medical bills. The cost of Harrell's care had ballooned to about $20,000 a month, which the family was paying out of pocket. (The surgery and equipment were free as part of the clinical trial.) Saxon had set up fundraiser pages and has gone deep into debt. She still sleeps next to Harrell to spare the family from having to hire a night nurse.

"I've just kind of pushed through the point of being frazzled," she said one morning, grinding a fist into her eye as she poured coffee into a French press. The new iPhone that Harrell had bought her as a Valentine's Day gift lay in a puddle of water on the counter top. Staring at it, Saxon registered the mess and the possible expense of a replacement. Sighing, she wrapped the phone in a towel and wiped the water with a sponge.

Both Harrell and Saxon have an unusual level of fight. But at times they look worn down. Harrell gets overcome pondering the enormity of his condition. How all the routines of normal life slipped away so quickly. How one day he, or someone else, will have to explain it all to his young daughter.

From behind the oxygen mask, his face crumples. Tears stream down his cheeks, pooling at the collar of his polo shirt. He appears to emit a wail though no sound comes out. A three dot ellipsis lingers on the computer screen, the brain transcription momentarily frozen.

Even a machine knows there are no words for this.

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