Casey gets his voice back

9:49Levana Saxon:It is, but I have nothing else to do either, so I'm just hanging out. I've been looking forward to this conversation, so...

9:56Casey Harrell:Robert, can you adjust where the computer cursor is? Yeah.

10:10Casey Harrell:I was diagnosed with this disease about five years ago, but the disease started in my legs and my arms. It began to impact my voice about two months after I was diagnosed. It was a slow-motion car crash. You wake up one morning, and you cannot sing anymore. But it is not like everyone cannot understand you after one day. That took about a good year of time. I work in an international organization, and the first people who could not understand me were the non-native English speakers. The people who were not working around me every day could not understand very much. Then I began to rely on other people to translate for me, like my assistant and my wife and my daughter.

11:00Casey Harrell:It is really funny and very unlikely that a three-year-old can translate for you.

11:05Levana Saxon:Yeah, I guess I'm curious about the Casey before all of this went down. Like, what was your relationship to words?

11:22Levana Saxon:I'm eager to get to know Casey as a human, not just as a user of a brain-to-words interface. I know from my reading that he works as an environmental advocate. The Guardian wrote a piece about him in 2021 with the headline, Casey Harrell, the climate activist taking on Wall Street. I'm waiting for climate activist Casey to come through. But at this point, Casey begins to squint his eyes. I'm not sure what's happening. His assistant Robert comes into the frame, explains he's having a coughing attack. We could probably all use somebody pulling up on our head and elongating our neck multiple times during the day, but only Casey gets this treatment.

12:06What's that?

12:16Casey Harrell:Oh, he's a smart ass. It is just a flesh wound.

12:24Levana Saxon:A Monty Python reference. A dark one. A man after my own heart. Classic.

12:32Casey Harrell:So as you can see, I am very much a verbal person and I love words. And I miss being able to talk as fast as I can think.

12:41Levana Saxon:I sense that.

12:47Levana Saxon:Being totally honest here, it's been nearly 20 minutes since I asked my question. I've just cut out the silences so you can hear what he has to say.

12:58Casey Harrell:Losing my voice is the number one problem that I have regarding this disease. It is utterly crippling to me. I would rather be able to talk than any other thing that this disease has taken away from me. And also be able to sing again.

13:13Levana Saxon:What's the first song you would like to sing again, if you could sing again?

13:19Casey Harrell:I would probably sing the song Baby Beluga from Rafi.

13:27Levana Saxon:That song always makes me cry because my parents used to sing it to me.

13:31Casey Harrell:It is the last song that I sang.

13:35Levana Saxon:I wonder, like, you talked about your three-year-old daughter being a translator for you. Oh, I'm typing again. Forgive me. I'll...

13:51Go ahead.

13:52Casey Harrell:I can listen in time and also compose what I am saying. Great.

13:56Levana Saxon:Yeah, I guess I was just wondering about your relationship with your daughter. Like, I'd imagine that you began to lose your speech as she was sort of gaining hers. It sounds like maybe that's the timeline.

14:10Casey Harrell:My daughter is a master communicator, and they began to talk when they were five months old.

14:15Levana Saxon:Wow, five months old. Amazing.

14:18Casey Harrell:I began to have symptoms of this disease when they were born, so they had never seen me without this disease. but obviously I was different when they were very young. They were learning to walk when I was having trouble walking and they were ready to use full sentences when I was beginning to not be understood. It was very strange. It was like the old saying, there's not room in this house for both of us to be doing these things.

14:48Levana Saxon:At around this point in the conversation, I did something that I do a lot in interviews. I asked Casey if he could remember a specific story of when his daughter helped to translate for him. And that led to one of the longest pauses in the conversation. A full four minutes.

15:07Casey Harrell:My daughter was with me at a medical appointment a number of years ago, and I was in with a speech therapist.

15:13Levana Saxon:Then a whole nother three minutes and five seconds of silence.

15:17Casey Harrell:He was supposed to be a specialist with the disease. He could not understand me for the life of him and was getting very frustrated.

15:24Levana Saxon:Another four minutes.

15:25Casey Harrell:Then my daughter stood up in the middle of the room and stopped doing the coloring book that they were given and said to the doctor,

15:31Levana Saxon:I'm struggling to follow.

15:40Casey Harrell:One more.

15:43Levana Saxon:Do you mean one more question?

15:48Casey Harrell:I am feeling a little pressed for time, so it is not getting it because I am rushing through.

15:56Levana Saxon:Casey's assistant, Robert, theorized that sometimes Casey's trying to talk too fast, and the system can't pick up what he's trying to say. That's got to be incredibly frustrating.

16:10Casey Harrell:I am doing this to myself because I am still in a mindset that is for a normal person.

16:15Levana Saxon:I see. You're not actually rushed. You're just thinking at the rate you want to think.

16:24Levana Saxon:At this point, Casey has another coughing attack.

16:28Casey Harrell:So part of the disease, and it is how most people die, is because of their lives, not being able to breathe in air on their own. I see. Good fucking times.

16:44Levana Saxon:About three hours go by like this, trying to get deeper with Casey, but being interrupted by a coughing attack or the AI system just not being able to pick up on his thoughts quick enough. And then in one case.

17:02Casey Harrell:Julia, you're muted.

17:03Levana Saxon:I just muted myself. Sorry. I was telling you this whole thing. Sorry about that.

17:15Levana Saxon:I can hear that there's a ruckus starting with your daughter's home and stuff, so it seems like the ruckus of the evening has begun. I don't want to keep you any longer. I have, like, a million more questions, but I can leave it there.

17:31Casey Harrell:Of course, you did not ask everything, but I really had no expectations for this interview. And I do not mean that in a bad way. It was really, really lovely to meet you. Very glad to meet you as well. And I will talk with you over email soon.

17:58Levana Saxon:Sitting there for almost three hours with Casey, mostly in silence, It was easy to forget how incredible it was that this man was using a brain-to-text AI interface to talk to me. At the end of the interview, I just sat there for a few minutes by myself, feeling pretty exhausted. I imagine that's just a tiny fraction of how exhausted Casey was feeling.

18:28Levana Saxon:It felt like a lot of things were left unsaid between us. I wondered if the people in his life, his loved ones, felt the same way.

18:41Casey Harrell:Yeah, so my name is LaVonna Saxon. I am a mom. I am Casey's wife and primary caregiver. That's after the break.

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20:57Casey Harrell:Futurology isn't sci-fi. Each week, they have thoughtful conversations with scientists, artists, technologists, philosophers, people who illuminate the forces shaping our lives and try to imagine both where they'll take us and also how we can respond. They discuss whether the future is something we have to endure or something we can design. And if we can design it, what will we build? Subscribe to Futurology wherever you get your podcasts or watch full episodes on YouTube.

21:52Casey Harrell:a$75 sponsored job credit at indeed.com slash podcast. That's indeed.com slash podcast. Terms and conditions apply. Need a hiring hero? This is a job for Indeed sponsored jobs.

22:06Levana Saxon:Could you tell me how you and Casey first met?

22:11Casey Harrell:Yeah, sure. So I was working at

22:15Levana Saxon:Rainforest Action Network. Casey and LaVonna met through work. They were both environmental advocates, and they were supposed to co-facilitate a talk with high schoolers.

22:25Casey Harrell:I found out later he knew who I was, had spotted me at a party and asked about me. And he figured out that who, you know, who he was going to be co-facilitating with. And before we met in person, he called me a couple of days before, you know, had a great excuse of calling me to plan the presentation. He was so charming and eloquent and energetic and enthusiastic and positive and affirming. And I got off the phone and immediately told my roommate at the time that I had hoped that this guy was single and cute because he totally made an impression on me over the phone. He just seemed like an incredible human being that I could just keep talking to forever.

23:14you know am I hearing a boing

23:20Levana Saxon:boing you are

23:21Casey Harrell:that means he his axometry is dipping I need to go check on him yeah for one second let's see

23:48All right.

23:51Casey Harrell:Great news. Robert is in there, so I can turn off the monitor. And he was just having, like, sleep apnea, so it wasn't like a more serious situation.

24:08Levana Saxon:Levana turns off the monitor in that moment. I realized the fuzz I'd been hearing intermittently throughout the interview is the noise of Casey's room and the various machines surrounding him. The machines that are keeping him alive. I realized that's always in the background for LaVonna. She's his primary caregiver. Always on call. So I wanted to ask you about the process of Casey losing his speech. Like, how did it happen for you? Yeah, I didn't.

24:45Casey Harrell:It was so gradual at first that I didn't really notice. And he noticed and said, hey, you know, I feel like my voice is a little more grovelly. And I was like, yeah, it's kind of sexy. Like, it was a little bit lower. I'm a sucker for a very low voice. I was like, I could get used to this. But then, like, you know, very quickly it started getting a little bit worse. And I noticed it most when he was singing. One night he sang our daughter to bed. The next day he tried and nothing could come out. We're like, okay.

25:28Levana Saxon:It was just silence? Yeah. For a while, she says, she and their daughter could still understand Casey fairly well and be able to translate for him to other people. Until slowly, they just couldn't anymore.

25:42Casey Harrell:Every interaction was grueling. We spent a good year or two where every time he tried to share anything with me, I could not understand it. And what's wild is for people who are losing their voice, I have since learned, it is often difficult to understand what you sound like to others you sound relatively the same to yourself really so for him he couldn't tell when what he was communicating had no like I could just not understand it at all and if I was involved in transferring him you know from from his chair to the bed. You know, like I, like I, there's, I can't even tell you, there's just like countless stories where like, I was like crushing his foot with the wheelchair, you know, like there's something horrible is happening to him and he's trying to communicate it to me and I just have no idea why he's so upset or what's happening.

26:49Casey Harrell:So there's a, there's a particular sort of torture that comes along with being entirely dependent on somebody else for your well-being and then not having that person be able to understand you. But sort of they can if you just try hard enough and you stick with it for 10, 20 minutes. Yeah, it was really, really, really rough.

27:17Levana Saxon:So when LaVonna and Casey heard through a cousin that researchers at UC Davis were trying out this AI interface that might help Casey communicate. Both of them were curious and hopeful from the very beginning. The researchers tried to temper their expectations. Don't do this

27:37Casey Harrell:because you think you're going to be able to use it to communicate normally again. The technology is just not there.

27:44Levana Saxon:They'd need to implant 256 electrodes in his motor cortex. The motor cortex, It's more muscular. It's not like it's trying to read his every thought, right? It's trying to read. What is it trying to read?

28:02Casey Harrell:His intended speech. I certainly do not ever want to hear Casey's unedited thoughts.

28:12Casey Harrell:Nor would he want those to be shared, I assume. So he has to try to move his muscles or imagine that he's moving his muscles.

28:21Levana Saxon:They'd then give Casey a bunch of prompts that he'd attempt to speak out loud. His motor cortex would send signals to his mouth to move, and they'd train the AI on those brain signals to teach it what his brain looks like when he's trying to say those things.

28:45Casey Harrell:When we were in the hospital recovering from brain surgery, They came by and said, you know, just wanted to schedule with us a time for our first research visit. Let's, you know, turn the lights on and see what happens. They were like, just in case, do you mind if we bring a whole film crew? We're like, sure, you know, why not? We were really surprised by that ask. We were told best, best case scenario is that it would take six to nine months for the brain surgery to heal, for Casey to learn it, for it to learn Casey. We just thought it was going to be so cool that we'd be able to talk when the researchers were here and they committed to giving us like an hour a session to having some personal use.

29:41So that was everything.

29:43Casey Harrell:We're like, oh my God, two times a week for one hour, we're going to be able to actually have a full, real conversation with each other. And at that time, two hours a week of real conversation felt like everything because it had been years. We'd been able to actually just sit down and casually talk to each other. So that's what we were hoping for. and what we got was like so much more

30:17Casey Harrell:yeah so it's okay so yeah when they came when they came at that first scheduled visit with the film crew and the you know the low expectation and the everything and we were plugging them in and then like and then it just worked. You know, we were just all in so much shock. It was so amazing. What did he say? What's the first thing he said? He surprised me the first time that we were going to hear the first version of his synthesized voice. I didn't know that they were doing this, but they asked him, what does he want his first synthesized voice words to say when, you know, we're all together. And he had them put in our wedding vows, or his wedding vows to me.

31:11Levana Saxon:Oh, my gosh.

31:17Um,

31:18Casey Harrell:which was, yeah, really intense. It also really weird. Wow.

31:37Levana Saxon:It's kind of funny because my experience of talking to Casey was like, I think in a way it was like opposite from your set of expectations, right? Because I had read all of these reports of it like working so much better than they thought and it being so great. I was just sitting in silence looking at him waiting for the voice to come out. Which was like for like sometimes it would take like a really long time. I had never been so like simultaneously in awe of a piece of technology and so frustrated by it.

32:17Casey Harrell:Is that your experience? Yeah. I mean, I think I'm still mostly in awe, right? Because it's like, what do they say? Happiness is directional.

32:27Levana Saxon:Yeah, you lived through how it was before.

32:30Casey Harrell:If we went directly from him speaking normally to this technology, then yeah, sure, I'd probably be frustrated. But because directionally, his communication is getting better all the time.

32:41Levana Saxon:Yeah, yeah.

32:42Casey Harrell:To me, it's fantastic.

32:46Casey Harrell:Shortly after, you know, we discovered that we could use it functionally for daily conversations. and work and everything, the team was able to put together like a button, basically, that Casey can click when he wants to be able to talk without the transcript being recorded so that we can talk as a family in private and not have that data be researched. Be researched, exactly. And we don't use it that often. We don't use it very often? Our lives are so overwhelmed with transactional conversations in terms of just like health and logistics of our everyday lives that the kind of the conversation.

33:33Levana Saxon:The button pushing conversation doesn't happen that often. Yeah, exactly.

33:37Casey Harrell:They're like, hey, let's let's let's talk about something really mushy and sweet or like let's take time to talk about, you know, something we don't want everyone in the world to know about. Yeah, we just haven't we don't have time for that.

33:49Levana Saxon:I mean, it's hard to have those conversations even when you don't have ALS or have to communicate. Exactly.

33:55Casey Harrell:Exactly. Yeah.

34:01Casey Harrell:So the most immediate, you know, transformation in our lives with a computer is now, you know, when he's thirsty, he can get water. When he has an itch, he can get scratched. Like his basic, basic needs that most people don't even realize that they have, but the thousands of needs, the ones that he chooses to ask for help with, which he said he only bothers us for about 10 % of the needs that he has throughout the day. But of those 10%, when he's asking for help, he can get help right away instead of just sitting there and suffering and, you know, and then having me freak out and panic over not knowing why he's suffering and not being able to figure out what he needs.

34:45Casey Harrell:Like, it's just a massive shift from that, you know? Yeah, yeah.

34:52Levana Saxon:But there is a lot that's still not there.

34:59Casey Harrell:Yeah. I mean, but now there's a possibility of that, right? Side note, it works when he's asleep, when he's in deep sleep. Really? It's super wild. Yeah. Whoa. Yeah. Just a quick call out. If there are dream researchers or brain, you know, sleep researchers out there, please get a hold of BrainGate because I would love for someone to come and try to understand what the heck is happening in his dreams because you can actually see words be produced and watch his brainwave change on screen when he's in deep sleep.

35:31Levana Saxon:Do you remember like a dream statement that he said or meant to say or whatever?

35:42Casey Harrell:Yeah, there's one time when in his sleep he asked me for something specifically. You know, he said my name and he asked me to do something, but I could tell he was totally asleep because the brainwaves were in sleep pattern. And he was, you know, totally knocked out. But then when he woke up, I asked him, you know, the first thing I said was, were you, you know, were you just having a dream where you were asking me for something? And he's like, yeah, I was. I was like, okay. Really? Wow. Yeah.

36:27Levana Saxon:One last question, if you don't mind, is just, you know, I guess you learned that like when he dreams, he speaks to you. When you dream, does he talk to you? Do you hear his voice?

36:43Casey Harrell:Oh, that's a great question. I unfortunately don't dream anymore. not enough deep sleep to get there i don't sleep enough to dream anymore yeah i have to be on edge and wake up all the time so my dreaming is so few and far between now who's got time for dreams yeah um i'll get there we're we're working on it but but um yeah my great question i don't i don't have a great answer.

37:28Levana Saxon:This episode was produced by me, Julia Longoria, and edited by Jorge Just and Joanna Solotorov. Erica Huang did the mixing and the sound design, fact-checking by Melissa Hirsch. Our team also includes Meredith Hodinot, Bird Pinkerton, Noam Hassenfeld, Christian Ayala, Sally Helm, and Amy Padula. If you want to learn more about Casey Harrell and LaVonna Saxon, and you might even want to donate to help their family, you can go to our show notes and our transcript for a link to their GoFundMe. If you have thoughts that you want to share with us, we're at unexplainableatvox.com. and if you'd like to support this show and the journalism that Vox does we would love it if you became a member it's easy to do you just go to vox.com slash members you'll get access to all of Vox's journalism and for those of you who have emailed us to let us know that you signed up because of Unexplainable thank you that makes a huge difference Unexplainable is part of the Vox Media Podcast Network and we'll be back soon with another episode about everything we do not yet know.

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