James and James Brain Damaged Walks Again
The last words that Liviana Sulzer spoke, xviii months ago, were very much in grapheme: "Now it's time for a song." This was often how she felt, living as she did inside a toddler moving picture-musical, where even just a spilled cup of milk could go her up onto a chair, twirling with her arms out wide and singing as loud equally she could manage: We just spilled our milk … Information technology was messy on the tabular array, and then we cleaned it upwards … And noooow it's aaaaall cleeeaaaned up! When the vocal was over, she'd bend toward her brothers, ages 6 and i, in a deep and gracious bow.
It was May 2020—a week before Livie's quaternary birthday—and the kids were playing in the m. Throughout the Sulzers' quiet neighborhood in Austin, Texas, the Persian silk trees had begun to bloom in pinkish-tipped puffs. There were flowers in their lawn, too. Livie had a favorite one, purple and well-nigh as tall as she was. She chosen it Dr. Iris and, trapped at dwelling by the COVID-19 shutdown, she'd fabricated a game of scooting over to it in her button-automobile and spilling all her problems. (She oft couldn't retrieve of any when she got at that place.)
But the loneliest phase of the pandemic, with its makeshift games and spotty kid intendance, was most over. Things were getting back to normal. A nanny had started but over a calendar week before, and Livie'south mother, Lindsay—a bioengineer and skilful in regenerative medicine—was headed to the office for her first day back at work, at a local cell-therapy first-upwards. Livie's father, James, an assistant professor at the University of Texas at Austin who specializes in rehabilitation robotics, was grading papers in the walk-in cupboard that he'd turned into a home role. He'd asked his graduate students to propose studies or devices that might one day help a patient recover from a nervous-system injury.
The heaven was clear and calm and sunny. Livie stood near the center of the yard, xxx feet below the overhanging branches of a pecan tree. Her 2 brothers were nearby.
"Now information technology'southward time for a song," she appear.
In that location was a crack, a whoosh, a scream.
Listen to The Experiment podcast: James Sulzer spent years edifice robots to help people recover from brain injuries. But then a tragic family unit accident changed his work—and life—forever.
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Livie was unconscious when the EMTs arrived, her eyelids fluttering. In the ambulance, James overheard someone say "blown right educatee." He didn't know what that implied. A falling tree branch had knocked his daughter out, but there wasn't any blood. How bad could information technology be?
At Dell Children's Medical Middle, a neurosurgeon named Winson Ho knew right away that information technology was bad—really bad. Livie'southward blown pupil, the fact that it was dilated and unresponsive to calorie-free, told him that her brain had been swelling for some time, pressed against the inside of her skull. Without rapid intervention, she could dice. A CT scan showed a thick fracture across her crown that forked into a pair of smaller, twig-like cracks—as if the branch's shape had been imprinted in her bone. In the operating room, Ho carved out a piece of Livie'south skull, four inches wide and vi long, to give her brain more space to bloat. If an older person had come in with that same degree of injury, he'd after say, doctors and family might have called non to arbitrate.
Livie spent the next two weeks in a coma. She had lesions on her right sensorimotor cortex, her left orbitofrontal cortex, and the tract of fibers called the corpus callosum that connects the encephalon's two hemispheres. James remembers being told that Livie might finish upwards with a fiddling trouble walking, and some difficulty concentrating on math problems. "It was devastating to think that she'd be permanently injured," he said.
In a grim coincidence, he'd spent his whole career devising ways to set a damaged nervous arrangement, and Lindsay had once worked on isolating stalk cells out of trunk fat, an arroyo that has been used to treat traumatic brain injuries (TBIs) such as Livie's. The two had met as graduate students at Northwestern University in 2004; James had been grooming at the affiliated Rehabilitation Establish of Chicago, one of the world'south leading hospitals for concrete medicine and rehab. Between the 2 of them, James and Lindsay had decades of experience in biomedicine, and a large network of professional connections. "There's no treatment out at that place that nosotros don't accept access to," James told me.
While Livie was in the ICU, James reached out to friends and colleagues and asked them for advice: Which treatments should they try with Livie in the weeks ahead? Which technologies might help? He also started coming upwards with notions of his own. At the hospital, James and Lindsay had to stretch out Livie's joints 3 times a solar day to help preclude contractures, a shortening of the muscle fibers that can effect in lasting disability. At that place must be some way to automate the stretching, James thought—perhaps he could design a robot that did it better and more often. "I was looking for opportunities to apply what I knew to aid her," he said. Just eventually he abased the idea. Building the stretching bot would take months, he realized—and even then it might end upwards pushing Livie'due south tiny joints too far and hurting her.
The chance of contractures soon gave way to other, graver ones. Afterwards two weeks, Livie came out of her coma, though simply to a point. Her eyes were open now and she was breathing on her own, but she wasn't making any sounds or responding to the world effectually her. "When Livie starts talking again, what will she sound like?" her older brother, Noah, asked his parents at one point. "She had such a beautiful voice."
Her vocalization returned, a few weeks afterward, in the grade of wounded, mouselike shrieks—a high-pitched din of pain or maybe fearfulness as she emerged from a semiconscious land. In mid-July, James flew with Livie to the Kennedy Krieger Institute in Baltimore, well known for its work with TBI in children; Lindsay took the boys to stay with family unit in Cleveland. (The parents would trade places twice a month.) In Baltimore, they rarely left their daughter'south side, sleeping on a fold-out chair in her room, haunted past the sounds of her discomfort. The only style to make her shrieking finish, James found, was past giving her koala hugs: She was the bear; he was the tree.
Every bit the founder of UT's Cellular to Clinically Applied Rehabilitation Inquiry and Applied science Initiative, James had seen a g clever fixes for a person'due south brain: neural stimulators and electrode caps; full-body exoskeletons; sleek, motorized contraptions that facilitated motility at a single joint. At his lab there was a split-chugalug treadmill that could measure the forcefulness of each footstep. His colleague had a robot that could assist the movement of both artillery at once.
James has always been a builder. In high school he was into woodshop, making coffee tables and armoires; later, he interned at Alcoa, the aluminum company, where he saw a massive forging press brand wheels for trucks. As a higher sophomore, he learned about advances in prosthetics, and it occurred to him that tinkering could serve a greater good. A boom was under style in the field of rehabilitation robotics; in graduate schoolhouse, James made a powered brace to help stroke survivors bend their knees. Afterwards, he shifted his focus to the brain itself, designing tools for neuro-feedback that used multimillion-dollar MRI machines to nudge a person's cortex into making new connections.
Working in an engineering lab, i tends to fixate on the engineering challenge: building the device. Whom exactly the device is for and what sorts of injuries it can help address are secondary concerns. Now that logic had flipped around as James sat beside his daughter. He knew that Livie's brain could nonetheless send signals to her muscles, even if those signals weren't strong enough—or clear enough—to make her muscles piece of work. So he came upwards with a mode for Livie to practise her neurons while her trunk remained still. With the help of a graduate student, he fastened electrodes to her limbs and neck, to pick upwards fifty-fifty feeble spurts of muscle activation; and then he linked them to a music playlist. Whenever Livie twitched her biceps or her triceps, even simply a tiny fleck, a favorite song, such every bit "Baby Shark," would play a lilliputian louder.
The electrode gadget checked all of James'due south boxes for design: It allowed Livie to participate in her own recovery; it encouraged her to practice; information technology made use of neural information that a doc or a parent might never see during a normal course of treatment. Notwithstanding it proved equally useless for Livie as the stretching bot that James had merely pictured in his head. For one thing, placing the muscle sensors took besides much fourth dimension, time that could be spent on other forms of therapy; he likewise couldn't tell whether Livie understood the signal, that she should try to make the music louder; and even if these other issues could be solved, Livie's muscles were then small that some activation might be missed.
Livie was making progress now, only in wearisome motility. In September, she moved dorsum to Austin, where she started doing therapy sessions at domicile (ix hours every week, plus 30 more of practice and "therapeutic recreation") and every bit an outpatient at Dell Children'southward (another seven hours). Still, she wasn't quite responsive; her eyes were misaligned; her head was cocked off to the left and couldn't seem to straighten up. She had trouble swallowing and had to take her meals through a tube connected to her stomach. Her right arm worked a fleck, and her left leg too, but she hadn't figured out a way of rolling over. James and Lindsay knew about the crucial, early window for reshaping and remapping the brain—in many cases, a person's progress in the first few weeks or months after an injury tin can predict how things play out in the long term. The level of recovery they'd in one case imagined at present seemed like foolish optimism.
In the months that followed, Lindsay took on the Herculean tasks of arranging Livie'south care—hiring nurses and personal attendants, procuring equipment such as wheelchairs, and setting upward a never-ending carousel of feedings, medicine, and exercise, all while wrestling the Hydra of insurance claims. Lindsay also puts in a few hours a week at her cell-therapy get-go-upwardly, and attends to her younger son, Reed, now ii years old and nearly ever seeking her attention.
James assumed the role of in-firm rehab scientist: the family'south principal investigator into Livie'south injury, and its chief adviser on how to care for her most effectively. Nature'south whim had put his daughter in this awful place. Applied science would help to bring her back. "I feel this weight of responsibleness," he told me, "given what I feel I should know about the field."
Shortly after Livie'due south accident, while she was still unconscious in the ICU, James reached out to another dad he knew in Austin—a guy in commercial existent estate named Barney Sinclair whose own daughter Charley had been injured several years before, when she was roughly Livie'due south age. Barney had been headed out to Oklahoma with three kids in the car. The highway was wet with pelting; another car hydroplaned across the median and Barney smashed into its side. Charley's encephalon, like Livie's, started swelling in her skull; surgeons had to drill a pigsty to reduce the pressure level.
Charley was treated at the same hospital every bit Livie would be. Barney, feeling helpless, started asking questions of her doctors and nurses: If I were Bill Gates, he'd say to them, what would I be doing to help my girl? You know, like, if resources were not an issue? Eventually he landed on robotics, and in 2018 he started a nonprofit—he chosen information technology Project Charley—with a program to purchase gait-grooming bots and other loftier-tech tools for rehab clinics in the Austin area. Charley would get the benefit of using them, then would other people like her.
That's when James and Barney met. "I'm a real-estate guy, correct? I build warehouses," Barney told me. "I don't know what equipment to buy, only I know how to tap into the smartest people in Austin and allow them assistance me brand smart decisions." And so he visited James'due south lab and saw the split-belt treadmill and the ii-armed robot; the dads had tiffin and talked about virtual-reality therapies and rehab gadgets that seemed to have potential. "He was so gracious with his fourth dimension. It's just tragically ironic that this happened to him [a few] years later on, and he was calling me," Barney said. "The thing that I kept going back to was that it was going to exist okay, that we were happy, and that he's going to go there but it's going to be just unbelievably tough."
Charley, at present 10 years old and half a decade past her accident, doesn't walk or talk, but fifty-fifty early on on she had a fashion of maxim yes (looking up) and a way of proverb no (a milkshake of the head). At Dell Children's, she began using an eye-tracking device, selecting icons with her gaze and forming rudimentary sentences that way. She's since learned to read and write, and now sends texts to Barney while he's working. "She tells you what she did that twenty-four hour period; she tells you what made her mad or what was funny," he said. "That's how Charley communicates."
For Barney and his wife, Shannon, the Bill Gates approach to rehabilitation has been successful. 2 years agone, their nonprofit bundled to purchase one of the nearly expensive and widely used rehabilitation robots on the market place—a one-half-meg-dollar motorcar called the Lokomat, meant to teach people with brain injuries how to walk again—and installed information technology at a clinic several miles up the road from James'south lab at UT. Charley has been preparation with it ever since. "We know it'south been good for her," Barney told me.
James and Lindsay aren't wealthy, but resources haven't been an issue. Given their backgrounds and milieu, they tin choose among a wide diverseness of interventions: stem-cell treatments, "diving" sessions in an oxygen tank, infrared-laser therapy, robotic exoskeletons. But equally scientists, they've been discouraged by the paucity of information on whether any of these approaches really work. Clinical studies in the field are pretty scarce, even when it comes to the most common neural injuries, in adults who endure strokes. Far less research has been washed on injured children; for those like Livie, with impairment spread across the encephalon, delivered by a vehement accident, in that location's almost zero.
"How practise you lot make an informed, educated decision?" Lindsay said to me. "Information technology's a huge challenge, and I think we have a harder time because we want to have some sort of scientific rationale." James agreed. "It's very easy, as a scientist, to just exist skeptical of everything," he said. "But as a parent, y'all need to have some optimism, and you lot need to take leaps of organized religion."
I first spoke with James and Lindsay in the spring, every bit the outset ceremony of Livie's blow approached. They'd been thinking back across their 12-month stretch of impossible calamity. The pandemic had meant that Livie (and her parents) couldn't have any visitors when she was in the hospital, and that every nurse or therapist who came to see her was likewise, to some caste, a mortal threat. And then came the wintertime storms in Feb and the power crisis and blackouts. Livie's medications grew warm inside the refrigerator, and the pump they used to requite her feedings almost sapped its battery.
At present the Persian silk trees in the neighborhood were flowering again, along with Dr. Iris in the Sulzers' yard. On James's and Lindsay's smartphones, automobile-generated galleries of snapshots taken "Ane Year Ago Today" approached a crushing turning bespeak: There was Livie riding on her wheeled giraffe; Livie playing in the chiliad; Livie with her brothers; Livie in a blackout. Information technology was fourth dimension for an bookkeeping of all the things they'd tried to practise to assistance with her recovery, and of how far she'd really come up.
Left: Ane of James's graduate students and a physical therapist fix to test a treatment intended to improve Livie's neck control. Right: A physical therapist uses a harness suspended from the metal frame in the Sulzers' living room to help Livie piece of work on walking. (Alec Soth / Magnum for The Atlantic)
During Livie's yr of rehabilitative therapy, she'd cycled through dozens of commercial products and devices from James'south lab—bungee-cord harnesses, wireless electrodes, eye-tracking games, and so on—but none of them was perfect. None of them was even shut. Her disabilities remain both various and severe: Like Charley, Livie cannot speak. She has a way of saying yes—she pumps her right arm upwards and down, like she'due south hitting an imaginary button labeled MORE—only her no, a left-foot stomp, is somewhat less reliable. She tin can walk, a chip, when someone'southward belongings her, simply her limbs take been weakened past osteoporosis. Her cognitive disabilities appear to be meaning, but they're catchy to assess given the limitations of her movements. "Nosotros don't know what she'll recover," Lindsay said. "We don't know to what point she'll get, when that volition be, will she ever talk again, any of those things. We don't know."
James, in particular, began to fixate on the mounting failures and uncertainties, and the means his field had come up short. He began to wonder if the whole idea of rehab engineering—its deepest motivations—might exist off the mark. Many of the bug Livie encountered had to do with a gadget'south usability: It might be cumbersome to set upwards, or hard to learn, or prone to breaking. Locating i of Livie's nerves with an electric stimulator took 10 minutes, for example, and then yous couldn't really tell whether the pulse was doing much to help her straighten out her foot. Given Livie's crowded schedule of care and treatments, even small-scale hiccups of this kind could brand an intervention useless. "It's so frustrating, considering all these ideas that I call back are awesome current of air up sucking," James told me. "I went into this to build devices to assistance people, but I never considered that edifice devices might non exist the answer."
When they were at Northwestern, James and Lindsay had been trained to think of failure equally a skill: To neglect correctly—to exercise it "in an interesting way"—you had to sift through the rubble of your disappointment and ask, How did things go wrong, and why did nosotros expect a unlike upshot? As the couple'due south fear and frustration over Livie's progress grew, these very questions came into their minds: What happened here, and why? The field of rehab engineering hadn't washed that much for Livie. Merely at present it seemed similar perchance Livie could do something for the field.
By the time nosotros offset spoke, James and Lindsay had written upwardly their observations. They were trying, as James would after say, to draw some pregnant—and perhaps a fragment of relief—from what had been "this huge, loud, overwhelming noise" inside their heads. On Apr 7, the Journal of NeuroEngineering and Rehabilitation had published the remarkable result: a co-authored manifesto on the principles of technology pattern, but too a peer-reviewed portrait of their suffering. The paper, "Our Child's TBI: A Rehabilitation Engineer'south Personal Experience, Technological Approach, and Lessons Learned," starts with brief biographies of James and Lindsay, and so a recitation of what happened to their daughter, referred to only as "B"—a private reference to her nickname, Boogie.
The text that follows is staggeringly personal. In a section called "Technologies Explored," James and Lindsay note how "the feeling of helplessness and rollercoaster of emotions is often temporarily assuaged with new treatments and devices." A subsection on "Emotional Trauma" begins like this:
Everyone in the family was traumatized by the accident … While initially it was frustrating that clinicians could not offering a prognosis, later we realized that such a prognosis has limited utility considering it is but a prediction and will not affect how we care for her. Although we endeavor to remain hopeful, information technology is very challenging given the irksome pace of improvement and general anxiety.
The eye of the paper, though, its message and its purpose, comes later on, where information technology turns from pain to disillusionment. At that place the language slips from "nosotros" to "I," from Livie'southward parents' indicate of view to her father's, the rehab engineer's. Like many in the field, he wrote, he'd never bothered to understand the very tasks that he was trying to automate. At the Rehabilitation Plant of Chicago, patients were seen only i or two floors away from James's lab, yet he did not take that walk downstairs; he did not spotter the therapists at work, or see the role they played in troubleshooting problems and providing motivation, empathy, and guidance. "We kind of accept this mental attitude that therapists are just too stupid to know the technology, or they're afraid of losing their jobs, or they just don't understand that robots tin do what they do," James told me. "Only that's not truthful. Therapists do a lot of things that robots volition never be able to do." It was just every bit wrong, the paper said, for engineers to disregard the about bones tools of rehab: a mat, a ball, a tabular array. These possess the virtues of sturdiness and simplicity, virtues that robotics engineers as well often overlook.
It wasn't that James had given upward on making gadgets—not at all. But he'd come to realize that innovation should be tailored to human being needs, non dictated merely past technological possibility. This was the central lesson, every bit the paper put information technology, of James and Lindsay's "immersive feel" of traumatic brain injury. In Figure 1 they provide a gear up of guidelines for rehab engineering: eleven threshold questions that should be answered for whatever new device. "Can the chore exist achieved using simpler engineering science?" reads the first. "Can it exist set up and cleaned up every bit quickly as a bench and some toys?" "Does it require expertise to operate properly?" "Can information technology be combined with other therapies?" If a new technology cannot pass these tests, it may not be worth the fourth dimension and effort to develop.
"I've been one of those people promoting loftier-tech stuff for a really long time, but to explore and encounter if it works, considering information technology could be revolutionary," James said. Now he was pleading for a new approach, and his message was getting through. Two prominent professors in the field told me that they've made "Our Child's TBI" required reading in their labs. James and Lindsay have been asked to give several talks related to their paper; one invitation, for them to serve as keynote speakers at the discipline's almost prestigious annual coming together, RehabWeek Virtual '21, said that "Figure one of this paper should be printed out and hung up over the desk or bed or kitchen table of every person working in our field. Somewhen, it should become ingrained into our brains and become 2nd nature."
At the Spero Rehab Clinic in fundamental Austin, an elderly human stepped over tiny hurdles every bit he made his way effectually the gym. At that place were other bones tools for clients' apply: a tilting table, parallel bars, a skateboard. But the site's clinical director, Brooke Aarvig, was showing me the bigger-ticket items. She took me over to an exoskeleton for training movements of the arm and hand, called the ArmeoSpring, and and then to a VR setup and a motorized "hippotherapy" bench with stirrups, which resembled the world's tamest mechanical balderdash. And then finally to the dispensary's prize auto, in the center of the workout flooring: the Lokomat from Project Charley, an eight-pes-high, two,200-pound marvel of rehabilitative tech—a treadmill with a hanging harness and robotic legs.
A young adult female with chin-length hair and severe weakness on ane side of her body was being strapped into the harness by a technician with a clipboard. He wrapped her left hand to the armrest with a bandage and braced her legs in the metal frames of the robotic legs; the car then hoisted her up about 6 inches. A moment afterwards, she was walking—or the Lokomat was walking. You couldn't actually tell. When the movement started, she was nonetheless briefly suspended well to a higher place the treadmill's belt, loping queerly through the air.
"Interactive robotic therapists" emerged in the early 1990s, when growing involvement in the science of "neuroplasticity"—the idea that the brain forms new connections in the course of learning or recovery—buoyed promise that the same process could be mechanized and made efficient. Robotic therapists could, in theory, help patients motility in ways they couldn't on their own so repeat those movements many times, while besides measuring their progress. Each repetition would trigger currents in the brain and feed into a rehabilitative menstruum of neural signals. Eventually, the theory went, these would cleave out new channels in the cortex—or reopen ones that had airtight.
By the end of the decade, a team at MIT led past the mechanical engineers Neville Hogan and Hermano Igo Krebs was running pocket-sized clinical trials with what they called the MIT-Manus: a robotic arm that could aid (and challenge) a patient's ain arm through different exercises. In a 1999 paper describing their accomplishments, the researchers boasted that "robotics and it can provide an overdue transformation of rehabilitation clinics from primitive manual operations to more applied science-rich operations." The Lokomat arrived a couple of years later.
Larger trials of the rehab robots turned out disappointing findings, though. A major written report from 2010, in The New England Journal of Medicine, looked at patients who had suffered strokes and had harm in their upper limbs. Across a 12-week intervention, those who'd been treated with the MIT-Manus robot did no better—though, to be fair, no worse—than those who'd gotten standard care. Another large study, published in The Lancet in 2019, reached a similar conclusion: 12 weeks of preparation on an MIT-Mitt provided no improvement in upper-limb function for people recovering from a stroke compared with normal therapy. Results take been slightly better for lower-limb machines: A comprehensive survey of the research literature, published in 2020, looked at 62 studies of "electromechanical- and robot-assisted gait-training devices" for people who had problem walking after a stroke—including 25 trials involving the Lokomat—and ended that the utilise of these machines (peculiarly in the first few months postal service-damage) increased people's odds of being able to walk independently.
"The hype that robots are going to set everything has not borne out at this point," says Theresa Hayes Cruz, the manager of the National Center for Medical Rehabilitation Inquiry at the National Institutes of Health, and one of James'southward former grad-schoolhouse classmates. "I think what we've learned is that therapists bring a lot more than merely the concrete movement to a patient. There's that psychosocial interaction, motivation, things like that."
But rehab roboticists advise that some clinicians may accept been too quick to abandon a good idea. Physical therapists sometimes worry that the technology is "likewise complex" for them, says Arun Jayaraman, the managing director of the Max Näder Centre for Rehabilitation Technologies and Outcomes Research at Shirley Ryan AbilityLab (as the Rehabilitation Establish of Chicago, where James did his graduate studies, is at present known). They may as well think of robots as a threat. "It'southward the same issue with whatever automation," he said. "Factory workers are scared of robots in the car industry, or in any industry, because they recollect the robots are taking away their jobs." Jayaraman concedes that the first generation of these devices was a little glitchy, merely he says that's simply how innovation works: You start with something, so you lot make it meliorate. "If you didn't do that first version of the iPhone, so yous're non going to get the iPhone 12 Pro Max."
At Spero Rehab, the Lokomat seems to be working well for certain clients. A therapist might get tired while assisting a patient on a unmarried lap around the gym, whereas the robot can help the same person do the equivalent of six to 10 laps. You can as well dial up the robot's body-weight back up over the course of a session, to keep the customer going even as they tire out. Information technology'southward like getting spotted when you're lifting weights—a way to state some actress reps.
But over the past two years, some therapists take grown wary of the Lokomat'due south power, and its magnetism. "This motorcar could be walking for you," ane told me. Its motors can take on much of the practice themselves. Indeed, the woman who was on the treadmill when I made my visit to Spero had been training in this very configuration with the guidance level turned up all the way, to 100 percent. That meant she had to use her muscles simply to help back up her torso weight, while the robot worked her legs on the treadmill like a marionette'southward. At that place's little reason to believe that this form of repetition, especially when information technology's limited to movement in one direction and of one specific type, leads to whatever substantive motor learning or recovery, James told me at ane point. "What nosotros're supposed to know, as scientists, is that if you guide someone to practise a motion that yous already know how to practice, it doesn't help."
Even when that guidance knob is turned downwardly, and even when a person is really moving for themself, expectations for the Lokomat can run besides high. Co-ordinate to a clinician who has worked with the device, people sometimes get so enamored with the mere idea of using a fancy robot—so addicted to its coolness and its automation—that they barely find when their preparation doesn't yield results. Some people "really, really" benefit from using the Lokomat, the clinician told me, merely others accept been working with it for years without whatsoever signs of progress. "Nosotros ask them to decrease how ofttimes they do information technology," or else tell the insurance provider it'due south time to discontinue therapy. Yet these people still end upwards coming back, and paying out of pocket for some other hour on the robot, and and so another, and another—more time spent without the hands-on piece of work of traditional therapy. "People retrieve this auto is a magic fix," the clinician said, "and it's non."
The offset matter you run across, upon entering the Sulzers' house, is a ix-by-nine metal frame suspended above a pair of sofas with a harness hanging down and space for Livie to walk. At that place'due south a stander, likewise—a large device that helps Livie do being upright. (James has been working on pressure sensors for the stander's human foot plate, hooked up to his smartphone via Bluetooth, to measure how Livie is balancing her weight.) When I first arrived, Livie was positioned on the rug, working with a concrete therapist. She looked upwardly—as she always does whenever someone new comes in—and gave a slow and happy-sounding greeting, a cross between a groan and a express mirth. She has curly brown hair and thick, dramatic eyebrows of the sort that people try to fake. She smiles all solar day long, with mischief and enthusiasm, and delights in having James lean in to kiss her cheeks. "I'k going to chomp you," he says. "I'yard going to give you the chomps!"
Several of James's students from UT also came by that twenty-four hour period, to test out the latest paradigm of Livie's ride-on auto. It's a jeep for kids, pink with big black wheels—the kind of matter you might get at Walmart for $300, but with its accelerator pedal rewired to a paw-operated console. The students carried it out into the yard, 15 or 20 feet from the screened-in porch, almost to the very spot where the tree co-operative had fallen the twelvemonth earlier. James lifted Livie, in her rainbow dress and sparkle sneakers, into the seat.
The team designed the console to brand it work in lots of dissimilar means. When Livie grasps and yanks a yellow brawl, the auto moves frontwards. With a different module in identify, the controller rotates like a dial, to aid Livie practice supination of her wrist. ("If a therapy is going to be really useful, it'due south got to practice multiple things at in one case," James told me. "Everything'due south got to be a Swiss Army pocketknife.") But after grabbing at the ball a few times without success, Livie lost energy, or patience. Her head began to droop a niggling farther to the left. She allow get.
The idea they're working from—to hack a ride-on car for use by kids with disabilities—comes from Cole Galloway, a professor of physical therapy at the University of Delaware, whom James consulted later Livie'south injury. In 2007, Galloway started GoBabyGo, a project to teach families how to create their own mobility devices at very low cost. Galloway'due south cars aren't supposed to aid a kid with a brain injury get "back to normal" in their basic motor functions, he told me. They're not designed, similar fancy rehab robots, to ready problems within a narrow frame of brain function. Rather, they're meant to give kids a way to move effectually and collaborate with their peers, without the stigma that might attach to being in a powered wheelchair. A medical model of recovery often gives fashion to a social ane, he said. "Most people eventually go, 'I no longer care equally much about damage level or office. I want my kid to be a citizen. I want them to be invited to a altogether party.' " But he wondered whether James was set for that step. "He's very much an engineer. He'south a builder at heart, meaning 'I set up things, and Livie is fixable.' " To Galloway, that mindset is a trap.
James and Lindsay's goal right at present, they told me, is for Livie to develop "functional independence," by which they seem to mean being able to accept care of herself, more or less, with the help of some assistive technologies. They acknowledged to me that this may non be realistic, simply they'll keep pushing for that result—with new treatments and devices, and more therapy—until they're sure that her window of recovery has airtight.
Livie's ride-on motorcar, as James conceived information technology, reflects a focus on improving basic skills. It's not designed to be a manner for Livie to move across the chiliad (even if that would exist nice). Instead it's meant to brand her more than excited about an do that could, in theory, aid her brain to ready itself. James and his students have made the car into a fancy version of the "Baby Shark" auto: If she pulls or twists the knob, she gets to zoom around! And if she gets to zoom around, she'll want to pull or twist the knob some more. The trouble was, Livie didn't seem that interested. "I don't know," James said after several failed attempts. "Perhaps she doesn't intendance about driving the car."
Back in the firm, it was time for Livie's lunch. A nurse put her in the stander in the living room and gear up upwardly an iPad for her entertainment while a pouch of chickpea formula emptied into her feeding tube.
James disappeared into his office and came out with a bin. He spilled its contents out onto the rug: an assortment of devices that he'd tried and then far. He showed me a headband with symbols on it, meant to help a computer track Livie's caput movement, and a harness called an Upsee, in which your kid is strapped to your hips and legs and feet in such a manner that the ii of you lot tin can walk in tandem. There was a VR headset, a spinal-cord stimulator, and a wireless, force-tracking computer interface called FitMi. At his lab I'd seen a sensor he was working on with a colleague in the textiles-and-apparel department—it tin be sewn into the collar of a shirt. James wants to employ it to measure out Livie's swallowing as she relearns to eat. He also had a programme to build a sheath that gently strokes her back, on the theory that information technology might reduce excessive muscle contraction.
I asked him whether he might decide, at any point, that plenty is plenty—that later on having tried so many gadgets without meaning success, it was fourth dimension to stop. "Am I gonna give up? No. From what I've seen, there'south e'er improvements to be fabricated," he said. "At the same time, I do have to consider at what point does this stop benefiting Livie, and that's a tough question to respond, and I haven't confronted that yet." He went on, after a moment's thought: "That'll be a tough, tough question to ask myself, and hopefully, I tin accept the backbone to say, 'Okay, you know what? We're meliorate off doing other things rather than trying to help her that fashion.' "
During tiffin, Livie'southward iPad cycled through a set up of family photographs and videos. Like the pictures on the Sulzers' walls, they were all from earlier the blow. Many showed Livie herself. That's what she likes to see when she's strapped into the stander, waiting for her food, James said. He'd found that the pictures often work every bit motivation for her therapy, so he'd programmed some of them into her rehab devices besides.
Left: Livie at dwelling house in her stander. James has been working on pressure sensors for the foot plate to measure how Livie is balancing her weight. Right: Lindsay with Livie and her older brother, Noah. He has asked his parents, "How come in stories there's always a happy catastrophe, and that'south not true in real life, like with Livie?" (Alec Soth / Magnum for The Atlantic)
"What'due south sad is nosotros've watched these videos and then many times, the memories are the videos," he said. At first, he used to look at them and think, Oh, hey, in that location's Livie. At present he feels every bit though he'south looking at a different person. "It'southward similar I've adult a new relationship with her," he told me. "At present information technology's like I have two daughters, in a way. Ane that passed away, and now this one."
He'd said something similar the first fourth dimension we talked, about seeing Livie separate in half—every bit one girl in the pictures and videos, and some other in the stander. "If I thought of it as that she died, and that at that place'southward this new child here, it felt like a release," he said. "I guess it'south hard to explicate why, but it made information technology easier." And yet James and Lindsay aren't quite ready to allow become of the daughter in the pictures. "Emotionally, we're non resolved in this at all," James said. "There are flashes she shows of her onetime self, and we still hold out hope that she's going to come up back."
The new Livie finished upwardly her repast. The onetime Livie hovered similar a ghost.
At dinner that evening, Livie's brother Noah, now 7, sabbatum to my right. He was bitter into the crust of his pizza, making holes that looked like stars and boats and other shapes—a abiding game for him, his parents said, finding pictures in his food. He pointed to a little glob of mozzarella that had several slices of black olive sticking out of it at different angles. "Hey, it's similar that building in Australia," he observed.
Before the accident, Livie was Noah's best friend. He all the same plays with her, and they like to prevarication in bed together and watch Television. Merely Noah struggles to understand what'south going on: whether Livie volition get back to how she was before, and how long that getting-back might accept. "He's really gotten the shit end of the stick in this whole bargain. He'southward out of control of everything," James had told me. Now Noah sat in that location while the grown-ups talked, studying his cheese-and-olives. "It's the Sydney Opera House," he said. "It's the Austin Olive House."
The calendar month earlier, at ane of James and Lindsay's academic talks, Lindsay had brought up something Noah had asked her: "How come in stories there'south always a happy ending, and that's non true in real life, similar with Livie?"
No one had an answer to that question. "I'm worried that yous don't accept a story," James had told me earlier that day. "You don't have an catastrophe." He'd hoped to find some resolution in sending out a message to his field. "Information technology does experience good that people say, 'I read your paper and I really liked information technology and I'm integrating information technology into my research,' " he said after dinner, "simply I would say that in the end, it withal feels kind of empty, because it doesn't change our state of affairs." He wondered if he'd always really had a bulletin to begin with. "I mean, it's like we're all just putzing around trying to find what might work, and no one knows what might work, and it'south simply a big mess. That'south not a story, and that's what bothers me."
James and I had spent many hours talking about Livie, and all the different ways he'd tried to help her. But Livie is non the only person who needs rehabilitation. Anybody in the family was traumatized by the accident, James and Lindsay wrote in their paper. Everyone in the family unit needs to get ameliorate; anybody is moving through their own windows of recovery, unsure of their prognoses, trying everything they tin can. There might never exist a magic fix for Livie's injury, and in that location might never be a magic fix for James's, or Lindsay'southward, or her brothers', either. Each of them tin can only gird themselves for the grueling journey to a better place—or for the grueling task of making peace with where they are. Each of them tin can only use whatsoever tools they take.
For James, those tools are in his lab. Making gadgets has been therapeutic, even when those gadgets break or go amiss. "It helps me feel similar I have agency over her recovery, and that gives me promise," he said.
It was almost time for the kids to go to sleep. James and Lindsay were busy attending to the boys, and then I sat downwards next to Livie in her room. She was in her bed, with green and pink puddle noodles pressed up against the rail to prevent a autumn. Her feeding tube was hanging from a pole. The nurse had said that Livie really likes a book called Ada Twist, Scientist, so I took information technology from the shelf and read aloud.
And and so Ada sat and she sabbatum and she saturday
and she idea about science and stew and the cat
and how her experiments fabricated such a big mess.
"Does it have to be so? Is it function of success?"
I looked up from the page and saw that Livie was staring at the wall. James had said that she sometimes has spells of inattention, and that he and Lindsay call back they might be seizures. But when I paused to ask Livie if she wanted me to read some more, a smile apace stretched across her confront. She groaned at me and pumped her correct arm up and downward.
Yes, she signaled from the bed. Proceed. The story isn't over however.
This article appears in the November 2021 print edition with the headline "The Engineers' Daughter."
Source: https://www.theatlantic.com/magazine/archive/2021/11/engineers-daughter-tbi-rehab/620172/
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