Listen and subscribe: Apple Podcasts | Spotify | Stitcher | Google Podcasts
James Sulzer has always loved building things. As a rehabilitation engineer, he spent years creating devices that he hoped would help patients recover from serious brain trauma such as strokes. And he believed strongly in the potential of rehab technology—that with the right robot, he could relieve a whole array of brain injuries.
But then, one spring day in 2020, there was a horrible accident. And suddenly James had to apply everything he knew about science and rehabilitation to help fix his own family. The Atlantic senior editor Daniel Engber spent months talking to James, following him as he used his scientific knowledge to try to find meaning in tragedy.
Further reading: “A Peer-Reviewed Portrait of Suffering”
A transcript of this episode will soon be made available. Please check back.
Apply for The Experiment’s summer internship. Applications will be accepted through March 25, 2022.
Be part of The Experiment. Use the hashtag #TheExperimentPodcast, or write to us at [email protected].
This episode was produced by Peter Bresnan with help from Julia Longoria and Alyssa Edes. Editing by Emily Botein. Reporting by Daniel Engber.
Fact-check by Yvonne Rolzhausen. Sound design by Joe Plourde. Transcription by Caleb Codding.
A transcript of this episode is presented below:
(In a crackling distance, snippets of radio can be heard. One snippet stands out—a child, maybe, happily saying something indistinguishable—before the static is clicked off. Silence.)
Julia Longoria: How would you describe your beat? What kinds of stories do you do?
Dan Engber: I would say I’m on the science and technology beat. I love stories about scientists who must confront the limits of their own science or apply their science to themselves.
Longoria: Before Dan Engber became a senior editor at The Atlantic, he himself was trying to become a neuroscientist.
Engber: I spent the most time studying motor control—the development of motor control—in young children.
(Metallic percussion enters, strange and sonically off-kilter.)
Longoria: His research was focused on kids’ brains. How exactly do kids make their bodies move?
Engber: And a really big and important concept is that of signal and noise.
(A strum of strings in the weirdness.)
Engber: When you decide to move your arm, your brain will send out a command in the form of electrical signals, like, literally traveling down the arm to the muscle.
Longoria: For little kids who are just learning to move, there’s a lot of noise that gets in the way.
Longoria: So it’s not like, “Hey, move your arm!” It’s like “Hey!” [Longoria produces a garbled mess of consonants distinct from any word. Both laugh.] or something?
(The music changes tone—the mechanical sounds are replaced by strums of an electric guitar, reverb, a void.)
Longoria: He eventually left that field. But then, about a year ago, he got introduced to a scientist whose life had just been turned upside down, and whose world now revolved around finding the signal in the noise—or helping his daughter do so.
(The music crackles and fades out.)
James Sulzer: How’s it going?
Engber: Good. How are you?
Sulzer: Doing okay.
Engber: The first time I talked to James Sulzer was in spring of 2021.
Sulzer: (Crackly.) Hello? Yeah, you kind of dropped off there. What? You—you there now?
Engber: I’d be sitting at my desk in my apartment in Brooklyn. James would be in his home office, which is a converted walk-in closet.
Engber: This is—this seems to be working.
Sulzer: Okay. So … yeah. How have you been?
(New music enters, up-tempo and driven by a looping percussion line.)
Longoria: James Sulzer has always been obsessed with making things.
Sulzer: I only liked building things as long as there was some kind of function or something I could see. In high school I did wood shop. So I, you know, created a lot of furniture that was in my parents’ house, you know, a coffee table, or …
Longoria: Like, he wouldn’t just make any coffee table.
Sulzer: (Laughs.) It wasn’t—it wasn’t like a stupid coffee table you put in a corner. It was a nice coffee table.
Longoria: It had to serve a purpose.
Sulzer: To me it was, it was the first time I could make something that was useful. And I love that feeling.
Longoria: James turned that feeling into a career. He went to engineering school and ended up using his skills to build machines that would help people, like stroke patients, recover from serious brain injuries. He became a rehab engineer.
(The music disappears.)
Engber: I think James came into this truly an optimistic engineer, you know, with this builder’s mentality of—
Sulzer: I see a problem, I think that technology can fix it.
Engber: —like an all-American, “We can build our way through it” mentality that I think is—is common among engineers and applied scientists.
(Over quickly plucked guitar music, a promotional video plays.)
Sulzer: Here at the University of Texas, we have the unique ability to develop robotic and engineering tools to understand the neural and biomechanical causes of an impairment.
Longoria: This is James speaking in a promotional video from 2014.
Sulzer: What we do is we take neuroscientific knowledge and we combine it with engineering concepts to develop better, smarter methods. One of the tools we’re developing right now … (Continues under Longoria.)
Longoria: In his early days as a rehab engineer, James was focused on developing new and ambitious devices: things like robotic limbs and knee exoskeletons. You could relieve a whole array of brain injuries, he thought, if you just build the right machine.
Sulzer: This is going to open up a whole new range of exciting clinical options in the future.
Longoria: He hadn’t actually seen the results he hoped for—yet.
(The music fades out.)
Engber: But then something happened that shook his faith in the whole project.
(Somber piano music plays in jarring half runs.)
Longoria: In addition to being a rehab engineer, James is a dad. He and his wife, Lindsay—who’s also a scientist—have three kids: Today, Noah is 8 years old, Reed is 2 years old, and Livie—short for Liviana—is 5.
This is a story about Livie.
(Livie speaks loudly, enthusiastically, eventually singing. The same child from the intro, she is difficult to understand, but sounds joyful, playful.)
Engber: James and Lindsay showed me a—a bunch of videos of her.
(The talk is now all song.)
Engber: In almost every video, she’s playing some make-believe game or performing some song and dance of her own creation at very high volume.
Sulzer: (From the home video.) Where am I going?
Livie: (Almost yelling.) Go to the doctor’s office!
Sulzer: Who’s the doctor?
Livie: (Now definitely yelling.) Me! I’m a Doctor! Livie! I’m Doctor Livie!
(The home video ends.)
Sulzer: She was whip-smart. I mean, she was—she was really hard to deal with. You know, she—she liked to get in all sorts of trouble. Just to piss me off, I could tell.
Engber: She was a very theatrical and mischievous kid.
Sulzer: So, for example, she walked into the kitchen, where Lindsay was doing dishes. And, um, Livie’s closing her eyes, just walking through the kitchen—closing her eyes, thinking that she was invisible. [Engber laughs.]
And then she opens up the back door, walks out the porch, right? And Lindsay’s thinking she’s just playing outside by herself. And so, f ive minutes later, she didn’t hear anything. She walks outside, and Libby’s all the way at the end of the street, trying to go to the playground or something. I don’t know what she was doing.
(A discordant beat of music, then quiet.)
Longoria: And then one day, in May of 2020 …
Engber: James was in his home office.
Sulzer: I was—I was sitting right where I am now, grading papers.
Longoria: This was the early days of the pandemic lockdown.
Sulzer: And, um, it was a completely still day.
Longoria: It was spring in Austin, Texas, where they live. Irises in the backyard were blooming.
Engber: Livie was outside in the backyard playing with her brothers.
Longoria: Livie was 3 years old at the time.
Sulzer: And Livie said, “Now it’s time for a song.”
Engber: And at that moment, a tree branch 30 feet up cracked and broke and fell and landed and hit her in the head.
Sulzer: Then I heard the screaming. And I—I looked outside to the bathroom window and I saw her, uh, splayed out on the grass. And, uh, the—the … That’s when, obviously, my heart dropped. And that’s when it started.
(A drone sounds, then a softly plucked guitar, distorted up and down at intervals.)
Longoria: This week, Atlantic writer Dan Engber follows the Sulzer family in the aftermath of their daughter’s accident. For years, James Sulzer had been building devices that might, hypothetically, help some patients someday. Now he was positioned to help the most important patient of his life.
Engber: The very first conversation I had with James and Lindsay, there was something James said in that call about how the accident had just created this cloud of noise. [A crinkling sound underneath Engber becomes audible just for a moment.] Like what had happened to his family was just a—an explosion of static, like a really loud “Pshhhh” that he couldn’t turn off, but that maybe there would be some way of tuning the dial so that he could find some kind of message in it.
Longoria: Rehab engineer James Sulzer looks for a signal in the noise and tries to build his way out of a tragedy.
This is The Experiment, a show about our unfinished country.
(The music slowly plays down and out.)
Engber: James was sitting in his home office and he heard screaming outside. And so he ran to a window, and he saw Livie was lying in a heap on the grass.
Sulzer: Her eyes were fluttering a little bit back. She was clearly unconscious. There was no blood or anything.
Engber: So they called an ambulance.
Sulzer: And the ambulance came pretty quickly. And I was overhearing the conversation between the EMTs, and that’s when they said she had a blown right pupil. But I don’t—I didn’t know what that meant
Engber: A blown pupil means your pupil is in its dilated state. It’s the brain pushing up against the inside of the skull and getting squished. And then you start to see damage across the entire brain.
Sulzer: I was thinking that she’d wake up or, like, you know—just like a boxer who got knocked out. There was no blood anywhere, you know. I didn’t think—it couldn’t have been that bad.
Engber: So they got to the hospital. They went right ahead and did surgery, which involved basically cutting a rectangular patch of bone out of Livie’s skull, you know, to create, like, a—a vent so that some of that swelling has somewhere to go.
Sulzer: I was, uh, a pile of goo at that point in time. I was—I was nonfunctional.
Engber: After the surgery, Livie was in a coma.
Sulzer: She was in a vegetative state.
Engber: So the extent of her injury was—you know—still unknown.
Sulzer: Prognosis was always our question. You know, how long is this gonna last? When is she going to get better? And this neurologist suggested that—from what I remember—he said that she’ll have some walking issues and maybe problems concentrating on math problems, something like that. That’s what I remember. Like, you know, she was going to recover to—what?—90 percent of what she used to be. Something like that.
(Soft, airy notes play slowly in a haze.)
Engber: So Livie was completely unresponsive for two weeks. She emerged from her coma, but only to a very limited extent. It wasn’t like in the movies, where suddenly the patient wakes up.
Sulzer: We thought once she gets out of the coma, she would be responding to external stimuli, and she wasn’t at all. It was completely “The lights are on, but nobody’s home.” No vocalization, no nothing.
Engber: And that is when James and Lindsay realized, This is far worse than we understood.
Sulzer: Like, she should have been woken up by now, right? She should be interacting.
Engber: This was not just a question of, like, “Oh, she’s going to have to learn to walk again.” This was a question of, like, “Can we communicate with her?”
(The music starts to build.)
Engber: At what point did you start to think, Okay, what can I do as an engineer?
Sulzer: Maybe the second day in the hospital. I started reaching out to people in pediatric rehab that I knew.
Engber: He’s thinking, What can I build? What can I do? How can I apply my knowledge and expertise to make her recovery better?
Engber: When Livie was in the hospital right at the beginning, one of the things you have to be careful about is if someone’s just motionless in bed for a long time, their joints can kind of seize up.
Sulzer: We’re spending 45 minutes stretching her joints like this, over and over and over again. Yeah, we’re going to have to automate this somehow. But, of course, I’m very far from my lab; it could wind up hurting her. So I abandoned the idea.
Engber: Then he started building other devices.
Sulzer: We tried EMG biofeedback and then, um, presented as feedback with the volume getting higher and lower to her favorite songs.
This was a game I wanted to make her to encourage active decision making.
Engber: He and his students rigged up, like, a toy car so that she could either press a button to make the car go or she could twist a knob.
Sulzer: There was another project where I wanted to measure her swallowing. She has a really tiny throat, so I can’t see her swallow very well.
Like, I threw everything at the wall, and I’m still continuing to throw everything at the wall.
I was so helpless. I scraped at anything I could to feel like I was helping her.
Engber: Doing that as best he could became, like, a moral and parental imperative. But also it was, in a sense, rehabilitative for him as well. It was therapeutic for him. It was a way that he could participate in the recovery.
Sulzer: It’s really easy as a scientist to pooh-pooh everything and be skeptical, right? No one wants to feel like they got the wool pulled over their eyes. But as a parent, you need to have some optimism and you need to have leaps of faith. So it’s a completely different mindset.
(A beat of music.)
Sulzer: I went into this to build devices to help people, but I never considered that building devices might not be the answer.
Longoria: That’s after the break.
(The music fades out. We have arrived at the break.)
(More radio static and snippets play up for a moment. The show is back.)
Longoria: I’m Julia Longoria. This is The Experiment.
And Atlantic editor Dan Engber has spent months talking on the phone with rehab engineer James Sulzer as he tinkers away, trying to build devices to help his daughter, Livie, regain brain function.
Engber: Hey! How are you, James?
Sulzer: Doing okay. In my cool new office!
Engber: (Laughs.) It’s a new, different background every time we talk!
(Conversation fades under.)
Longoria: At this point, it had been a year since Livie’s injury.
Sulzer: You know, certain flowers bloom at this time. Irises. We have purple irises in our backyard that—they just bloomed a couple of weeks ago, and, uh … So it just [A beat.] reminded me of the accident.
Engber: After we already, you know, had many conversations one-on-one it sort of occurred to both of us—
Sulzer: While you’re on here, do you want to meet her over the Zoom? (Continues under.)
Engber: —James could introduce me to Livie.
Engber: Uh, I’d be happy to meet her now. Yeah!
Unidentified voice: Wow!
Sulzer: I know! That … He—he wants to. Yeah, I figured it’s a good time.
Engber: James carried the laptop through his house. And Livie was with one of her therapists doing exercises.
Sulzer: And then we’re doing feeding right now, or do … ?
Therapist: Yeah we’re doing feeding, and we’re actually—[Livie vocalizes over the therapist.] Livie! [The adults laugh.]
Sulzer: Say hi, Livie! Can you wave hi? [A beat.] Good job.
Engber: Hi, Livie!
Sulzer: Hi! Can you—the volume is really low.
Engber: One of the things that struck me right away was how instantly she made eye contact with me in the screen.
Sulzer: Okay. Can you … Okay. Now she can—now she could hear you a little better.
Engber: Nice to meet you.
Sulzer: Hi, can you smile? There you go! This is good. This is speech therapy, so I don’t know if you can see … (Fades out.)
Engber: James remembered being told in the hospital that Livie would regain most of the function she’d lost—that she might have a little bit of trouble walking, and maybe some difficulty concentrating on math problems.
Sulzer: Well, we’re a year now. And she—she’s not looking great. But, uh, you know, she’s getting better, don’t get me wrong.
But she has a—what’s called a disorder of consciousness. You know, um, I asked her this morning to touch her head. “Can you touch your head, Livie?” And she just looks at me and smiles and laughs. So, I mean, clearly she’s not understanding what’s going on in that question.
But you know, a— minute later, I ask her, “Hey, Livie, can you touch your nose?” And she reaches up and touches her nose. And then, “Can you touch your ear?” You know what I mean?
Engber: Does she, um, have a consistent and clear way of signaling “yes” and “no”?
Sulzer: Uh, we’re working on “yes” right now. Um, if she doesn’t want food—like, we offer her food and she doesn’t want it—she’ll maybe pull away.
Sulzer: But that’s just for food. That’s not “no” in a broader sense. Uh, for, “yes,” we—that’s been, like, one of the main developments in the last few weeks is that, she gives a [Approximating Livie.] “Nagn an gan gan” when—when she wants something. So it’s not “yes” per se, but it’s—it’s—it’s a … You can kind of tell she wants it.
So it’s not like she’s this fully conscious person trapped in an impaired body. Right? You can tell the difference between those two.
I always equate it to, like, a football game. Like, we want to be within field-goal range of—of function. So if we’re, like, you know, 70–75 percent recovery, but it—you know, right now, 30–40 percent, 50 percent? Like, she’s still gonna be dependent on assistance her entire life.
Engber: It was clear that her progress has not been as thorough or rapid as James or anyone had hoped. So at that point, James felt frustrated that he’d tried so many different things and none of them were really working.
Sulzer: We felt we’ve done everything we can for her. Why—why isn’t she beating the odds? Why—why is it even worse?
Engber: Do you—do you know she’s not beating the odds?
Sulzer: We don’t know what the fricking odds are. I mean, no, we don’t know! That’s the thing. It’s just, it was this expectation we had after that meeting with the neurologist. They offer a prognosis. But even still, they’re—they’re useless. Prognoses are useless.
Engber: All of these things that he was trying were sort of based on these ambitious ideas of how you could use high technology to speed along recovery. And now that he was dealing with it, now that his family was dealing with—with these devices, in a really practical way, he saw how flawed they were.
Sulzer: You know, all the time, these ideas, like, in theory sound great. And then in practice you realize there’s just so many reasons it doesn’t work.
(An ethereal wash undergirds a synthesized melody, distant and dreamy.)
Engber: If you’re not thinking about Does this fit into the 45-minute slot that Livie has on Thursdays between this appointment and that appointment?, then you might as well have not built the robot at all.
Sulzer: I can’t adapt—like, I can’t expect Libby to adapt to anything or—or try and move a little bit to make it work. It has to work perfectly.
Engber: In the old days when he was just, you know, a scientist in his cool robotics lab at UT, you could spend all day there and just build the most complicated, intricate, theoretically effective robots ever.
(The music fades out.)
Sulzer: (Stammering for a moment.) Nothing I’ve done—that I’ve built—do I feel has directly helped people. It’s more, um, when I stopped building things that I found more valuable results.
Engber: It was, you know, a collision between this idealized version of rehab engineering that he had had—and his colleagues had had—and, you know, the lived reality of working with someone with a severe brain injury who’s trying to get better.
(A rolling drone sounds.)
Sulzer: I don’t have any solutions on what works and what doesn’t work. And that’s embarrassing to me. That’s—that’s humiliating. Like, I—I—This is what I do. How do I not—how do I not have a good answer on what works and what doesn’t?
Engber: I definitely got the sense that, for James, having so much scientific knowledge and sophistication could end up feeling like a curse. Like, I think that kind of knowledge was paralyzing.
Sulzer: I’m trying to be willing to accept that everything I’ve learned and espoused for so many years may be wrong.
Like, one of my biggest fears is that this happened for no reason and there’s nothing good that comes out of this.
Engber: It’s like all that static he’d been hearing from the start had nothing inside. There was no signal in the noise.
Sulzer: It’s like we’ve been through this hell, and it still sucks. That’s not a story. That’s not something people want to watch.
This is just a black hole of suck.
Sulzer: When it’s your daughter and you had these visions of her doing certain things and, you know, going to prom—I could care less about prom [Engber laughs.]—but, you know, it’s classic! It’s just an idea of something that you do with a daughter.
And it feels like it’s just this constant sense of loss … which eliminates our ability to be thankful for—for what we have.
And what we have right now, I mean … She loves to give kisses. I mean, she can’t—she can’t, you—you know, do, uh, fish faces. She—she just opens her mouth and sticks out her tongue like [Mimicking her, mouth agape.] “Ahh!” [Engber laughs gently.] Like that. It’s really adorable.
You know, it’s just so far off from where she was. And it’s so hard to appreciate that.
(The music is more sparse now.)
Sulzer: It started to occur to me that, uh, she’s … Like, it was much easier to accept the situation if I thought of it as that she died, and that there’s this new—new child here. It—it felt like, almost … It was like a release.
Sulzer: It’s weird. It’s like I have two daughters, in a way. One—one that passed away, and now this one.
(The music fades to silence.)
Engber: I want to just catch up and find out what’s been going on, since it’s been a long time since we’ve talked. But then there were some other things … (Fades under.)
Engber: So I actually talked to James again a few weeks ago. It’s been about a year since we first started talking, and now about almost two years since Livie’s accident.
Engber: How is Livie doing?
Sulzer: So she’s gotten, uh, she—she’s continuing to improve, uh, still slow and steady.
Um, she can sit up by herself for, I don’t know, five, 10 minutes. She ate pizza the other day. I cut it up real small. So she—she’s chewing food, too, which is a real big step for her. She walked in her trainer, um, almost a mile by herself. Uh, so, you know, stopping a little bit here and there, but, you know, when she first started, she couldn’t walk five meters and now she’s—she’s going a large distance.
I think in general it’s hard to find anyone who’s really supportive of—of low-tech solutions that are boring, but might be useful and practical.
Engber: Livie has a tablet, like an iPad, that she uses as a communication device.
Sulzer: You know, she could hit the button “Eat,” and then she can go to “Food,” and then she goes to—and there’s a button for “Asian food.” And then she goes to “Hummus,” right?
So she goes through screens to get the hummus, and she loves to eat hummus.
She said her first word, uh, which is “mama.”
Sulzer: So … Yep. Yep. And—and it’s clearly meaningful. Like, you know, she says it when she sees her mom. She goes, you know, “Mama.” “Mama!” and, uh …
Engber: What was that like, um, for you and Lindsay, when … ? I mean, you—when you use the phrase, “She said her first word,” of course, it makes me think of the language of, you know, having a, uh—a baby in the house.
Sulzer: You know, uh, well, it—it made me feel really good to hear it. You know, even though it’s the first word and she hasn’t done it before. [Stammers.] I mean, it’s not like I think that she’s gonna have a full vocabulary anytime in the future. You know, whatever she gains, we’re happy to see that gain. But, with a baby, you—you kind of look towards the future and you have these expectations where you want the baby to be. And, you know, you have this timeline you’re expecting.
And it—with her, we just take what we can get.
You know, I feel like I’ve accepted the situation and, um, you know, I mean I’m—and I—I feel a lot happier. So I’m starting to feel a little bit more like a normal person, although our life is anything but.
I still don’t like when people say “Everything happens for a reason.” To think that my daughter had her life changed like this. Um … That’s still hard for me to accept.
(Clanging bells, like heavy wind chimes, play, low and resonant but still bright somehow.)
Engber: So James and his wife, Lindsay, ended up writing a paper—an academic paper—about Livie’s injury and their work with her to help her recover. And the paper really looks at the, you know, the gap between the work that is done in the lab in designing these devices and how they can work or will be used in a real-life situation. And they started getting letters back after the paper was published.
Sulzer: And one of them had a good point, like, you know, “The meaning in life isn’t, you know—it’s just to survive. You just, that’s the point. And, uh, it’s not about trying to figure out why something happened. Just live.”
(A long beat with nothing but music, sparse and reflective. An autoharp strums in the quiet cacophony.)
Peter Bresnan: This episode of The Experiment was produced by me, Peter Bresnan, with help from Julia Longoria and Alyssa Edes. Editing by Emily Botein and reporting by Dan Engber.
You can read Dan Engber’s full article “A Peer-Reviewed Portrait of Suffering” on our website, www.theatlantic.com/experiment.
Fact-check by Yvonne Rolzhausen. Sound design by Joe Plourde.
Music by Tasty Morsels.
Our team also includes Gabrielle Berbey, Jenny Lawton, Tracie Hunte, Sarah Qari, Salman Ahad Khan, and Natalia Ramirez.
Bresnan: Also, The Experiment is looking for an intern! Students and recent grads are encouraged to apply for our paid summer internship. We’re accepting applications through March 25. You can find out more on this episode’s page at www.theatlantic.com/experiment.
If you enjoyed today’s episode, please take the time to rate and review us on Apple Podcasts, or wherever you listen.
The Experiment is a co-production of The Atlantic and WNYC Studios. Thanks for listening.