Casey gets his voice back

Summary

Unexplainable (Vox) – “Casey gets his voice back”

Date: March 25, 2026
Host: Julia Longoria

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Episode Overview

This compelling episode of Unexplainable explores the story of Casey Harrell, an environmental activist diagnosed with ALS, who lost his ability to speak and communicate with his family, friends, and colleagues. Thanks to a groundbreaking brain-to-speech AI computer interface developed by researchers at UC Davis, Casey regains a version of his voice. The episode dives deeply into how this newfound technology works, Casey’s emotional journey, and the impact on his family—particularly his wife, Lavonna Saxon.

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Key Discussion Points & Insights

1. Technical Difficulties and Setting the Stage

• Early Awkwardness: The episode begins with Julia attempting to connect with Casey for a remote interview, highlighting the challenges and awkwardness of setting up a conversation with someone who relies on advanced assistive technology.

  • “Starting a remote interview can be a little awkward. Takes a while for everyone to get settled… But this is different.” – Julia Longoria (01:49)

• Introduction to Casey’s Condition:

  • Casey was diagnosed with ALS in 2020, which started affecting his limbs and eventually his voice. He underwent surgery to have 256 electrodes implanted in his motor cortex.
  • “It was a slow motion car crash. You wake up one morning and you cannot sing anymore.” – Casey Harrell (10:23)

2. The Brain-to-Speech Interface

• How It Works:

  • The electrodes in Casey’s brain pick up speech-related activity, which an AI interprets to help him communicate.
  • “Researchers say it’s 97% accurate. And it’s fast… described as instantaneous.” – Julia Longoria (04:07)

• Reality vs. Perception:

  • Despite reports of its accuracy and speed, the process remains slow and laborious—marked by long silences as Casey selects or edits words before speaking them aloud via the AI.
  • “For 3 minutes and 48 seconds, I’m just staring at Casey’s face. I don’t know that I’ve ever looked at someone’s face for that long in silence.” – Julia Longoria (06:01)

• Learning the Cadence:

  • Casey’s interface sometimes requires corrections using his eyes and can be thrown off if he tries to ‘speak’ too quickly.
  • “I am doing this to myself because I am still in a mindset that is for a normal person.” – Casey Harrell (16:23)

3. Emotional and Human Impact

• Losing and Regaining a Voice:

  • For Casey, losing his voice was the most devastating part of his illness:
    • “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.” – Casey Harrell (13:11)

• Voice Reconstruction:

  • The AI-generated voice is based on old public speeches, so it sounds like a version of him from before his illness.
  • “But I had to use a version of my voice that is all from public presentations. So that is what I hear.” – Casey Harrell (07:48)

• Relationship with Family:

  • His daughter had to become a translator for him. The timeline of her learning to speak paralleled his losing speech, a “very strange” and difficult family dynamic.
    • “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.” – Casey Harrell (14:31)

• Memorable Song:

  • The last song Casey sang before losing his voice was “Baby Beluga,” a lullaby for his daughter.
    • “It is the last song that I sang.” – Casey Harrell (13:44)

4. Behind the Scenes with Technology

• Privacy and Conversation:

  • The system allows for a “private mode” where family conversations aren’t recorded for research—though this is used rarely due to the demands of daily caregiving.
  • “Shortly after ... the team was able to put together, like, a button ... that Casey can click when he wants to talk without the transcript being recorded...” – Lavonna Saxon (32:44)

• Unexpected Effects:

  • The interface occasionally works even when Casey is asleep, raising intriguing questions for dream and sleep researchers.
    • “It works when he’s asleep, when he’s in deep sleep... you can see words be produced and watch his brainwaves change on screen when he’s in deep sleep.” – Lavonna Saxon (35:11)

5. Lavonna's Perspective: Caregiver & Partner

• How They Met:

  • Casey and Lavonna were both activists and met through work.
  • “He was so charming and eloquent and like energetic and enthusiastic and positive and affirming. ... I had hoped that this guy was single and cute because he totally made an impression on me over the phone.” – Lavonna Saxon (22:27)

• Witnessing Slow Loss:

  • For Lavonna, the loss of Casey’s voice was a gradual and at times imperceptible process at first, later accompanied by emotional and logistical strain.
  • “Every interaction was grueling… 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.” – Lavonna Saxon (25:45)

• Turning Point with Technology:

  • The arrival of the brain-to-speech interface gave back vital communication capacity.
  • “At that time, two hours a week of real conversation felt like everything, because it had been years since 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.” – Lavonna Saxon (28:48, 30:24)

• First Words:

  • Casey’s first synthesized words to Lavonna after the device was activated were his wedding vows.
  • “He had them put in our wedding vows or his wedding vows to me.” – Lavonna Saxon (30:49)

6. Challenges and Silver Linings

• Notable Frustration:

  • Despite technical advancements, communication remains slow and exhausting—for both Casey and those around him.
  • “I had never been so, like, simultaneously in awe of a piece of technology and so frustrated by it.” – Julia Longoria (32:09)

• Changed Practical Life:

  • Basic requests (“I’m thirsty,” “scratch an itch”) can now be met promptly, greatly improving Casey’s daily comfort and reducing Lavonna's sense of helplessness and panic.
  • “Now, you know, when he’s thirsty, he can get water. When he has an itch, he can get scratched ... it’s just a massive shift.” – Lavonna Saxon (34:04)

• Dreams Deferred:

  • When asked if Lavonna now hears Casey’s voice in her dreams, she reveals she barely dreams at all due to sleep deprivation from caregiving.
  • “I don’t sleep enough to dream anymore.” – Lavonna Saxon (36:55)

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Notable Quotes & Memorable Moments

• “It makes people cry who have not heard me in a while.” – Casey Harrell, on using the interface for the first time (04:25)
• “It is just a flesh wound.” – Casey Harrell, referencing Monty Python after a coughing fit (12:34)
• “Losing my voice is the number one problem that I have regarding this disease. It is utterly crippling to me.” – Casey Harrell (13:11)
• “If we went directly from, like, him speaking normally to this technology, then, yeah, sure, I’d probably be frustrated. But … his communication is getting better all the time ... to me, it’s fantastic.” – Lavonna Saxon (32:33)
• “I don’t sleep enough to dream anymore.” – Lavonna Saxon (36:55)

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Timestamps for Important Segments

• [03:13] – Details on Casey’s brain implant and AI system.
• [06:01] – Julia describes the long silences and how communication isn't instantaneous.
• [13:11] – Casey on the impact of losing his voice.
• [14:23] – Parallels between his daughter’s speech development and his loss.
• [25:45] – Lavonna describes the “particular sort of torture” in losing communication with Casey.
• [30:49] – Lavonna recalls Casey’s first synthesized words.
• [32:09] – Julia expresses simultaneous awe and frustration at the technology.
• [34:04] – Lavonna discusses the real-life impact of efficient, basic communication.
• [35:11] – Discovery that the interface sometimes works in deep sleep.
• [36:45] – Lavonna on not dreaming anymore due to exhaustion.

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Tone and Language

The episode maintains a warm, emotionally honest, and gentle tone throughout, balancing marvel at technological innovation with candid discussion of struggle, frustration, and the irreplaceable value of human connection. Both Casey and Lavonna’s voices are witty and resilient, infusing even difficult moments with humor and perspective.

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Summary

The episode “Casey gets his voice back” offers a profound look at how cutting-edge brain-computer interfaces are starting to restore the fundamental human ability to communicate—while reminding listeners that even near-miraculous technological advances can’t fully bridge the gaps left by diseases like ALS. Through slow, sometimes halting conversation, we are reminded of the incalculable value of a voice—of being heard, understood, and loved.

Transcript

[Narrator/Announcer]

Support for the show comes from Anthropic, the team behind Claude. They say that Claude is the collaborator that actually understands your entire workflow. So for developers that looks like Claude code, it runs in your terminal, reads your code base, and can apparently take on things like writing tests, refactoring, or debugging without you hand holding it through every step. Anthropic committed to not running ads in Claude. So when you are deep in something that matters to you, they say the answer you get is shaped by your question, not by an advertiser's agenda. Ready to tackle bigger problems. Get started with Claude today at Claude. AI unexplainable.

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[Julia Longoria]

I'm Julia Longoria.

[Lavonna Saxon]

This is unexplainable.

[Julia Longoria]

I don't know if you can hear me. Can you hear me over there? And I'm on a video call, having trouble starting an interview. I'm in Miami, Florida. The interview is in Oakland, California. I don't know if Gabrielle can hear. Can you hear Julia on your headphones or. No.

[Lavonna Saxon]

But I'm wondering if maybe I should

[Julia Longoria]

try and join her. Starting a remote interview can be a little awkward. Takes a while for everyone to get settled. I'm used to that. But this. This is different. I can't hear the person I'm trying to interview, Casey Harrell. But I think I can hear him breathing. And I can see him on my computer screen. His mouth is covered by a machine that's helping him to breathe.

[Lavonna Saxon]

Can you hear Julia? Casey, can you hear me?

[Narrator/Announcer]

Yeah.

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Yes.

[Julia Longoria]

Okay, great.

[Casey Harrell]

Yes. And we are learning the first thing about communicating with each other, and that is that you will have to go slowly. And I take a lot of time to communicate.

[Julia Longoria]

Great. I can do that. I read about Casey on the news.

[Casey Harrell]

This ALS patient, Casey Harrell, lost his ability to speak.

[Julia Longoria]

Casey was diagnosed with amyotrophic lateral sclerosis in 2020. It's a neurodegenerative disease that slowly weakens and paralyzes you. Within three years, it affected his speech. He could no longer speak to his daughter.

[Lavonna Saxon]

In 20, Harrell was implanted with sensors

[Julia Longoria]

in his brain, he agreed to let Scientists at UC Davis implant 256 electrodes in his motor cortex, the part of his brain that controls the muscles in his mouth.

[Lavonna Saxon]

And using his speech related brain activity, the system was able to decode his words.

[Julia Longoria]

Researchers trained an artificial intelligence system to read his brain signals when he was trying to speak and predict what words he was trying to say. Allowing people with disabilities to talk by

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just thinking about a word, by just

[Julia Longoria]

trying to talk, Casey can get the system to say what he's trying to say. Researchers told me it's the first system they've heard of that's good enough that Casey's using it when the researchers aren't around just to live his life.

[Casey Harrell]

Researchers say it's 97% accurate.

[Julia Longoria]

And it's fast. They say before this, some ALS patients like Stephen Hawking could slowly type sentences by using their eye contact or small muscles in their face to control a computer. Casey's system is described as instantaneous.

[Casey Harrell]

It makes people cry who have not heard me in a while.

[Julia Longoria]

This week on Unexplainable. Listen to Casey Harrell and me stumble our way through a conversation, one of the first of its kind, through a brain to speech AI computer interface.

[Casey Harrell]

What do you want to know about me?

[Julia Longoria]

Who are you? What's your name? What do you do, and how are you talking to me right now?

[Lavonna Saxon]

It.

[Julia Longoria]

For 3 minutes and 48 seconds, I'm just staring at Casey Harrell's face. I don't know that I've ever looked at someone's face for that long in silence. It's becoming clear that our communication isn't exactly going to be instantaneous.

[Casey Harrell]

Okay, I am Casey Harrell, and I am a person who has a specific disease that has left me totally paralyzed. And I cannot talk to my family, on my friend, or to work without my brain to computer interface device that I have right here.

[Julia Longoria]

I couldn't tell if he was done talking, but I took a chance and asked another question. I wonder, when you hear that voice out loud, what's. What's your relationship to it? Like, does it feel like you.

[Casey Harrell]

It feels like a particular version of me.

[Julia Longoria]

Can you say more about that? Like what. What version? Here. A whole 2 minutes and 45 seconds pass.

[Casey Harrell]

The improvements in artificial intelligence has made it so everyone can have a voice that sounds like.

[Julia Longoria]

Yeah, I'll say. Like, I think that you have this incredibly unique experience of losing the ability to communicate and then regaining a version of it.

[Casey Harrell]

But I had to use a version of my voice that is all from public presentations. So that is what I hear.

[Julia Longoria]

For a second I was like, what is he talking about? But then I realized he was still answering my first question. I had just barreled through, not waited for the rest of his response. I was being rude.

[Casey Harrell]

How do you want me to answer you? And I have more to say. You have already started talking.

[Lavonna Saxon]

Would it be possible?

[Julia Longoria]

What was invisible to me but visible to people in the room, like producer Gabrielle Burbet and Casey's assistant Robert, was a second screen above Casey's computer, an interface where Casey's intended speech was appearing instantaneously as typed out words. Sometimes the system would get them 100% correct and other times not so much. So in each of the silences that I experienced, Casey was using his eye gaze to correct those words. And. And then he'd press play to have the AI version of Casey's voice speak the words. I'm learning the cadence. I apologize. I'm pretty sure I interrupted you. From this point on, Gabrielle starts texting me from the room to make sure I don't interrupt. I'd like to ask you some questions. I'll try to keep them limited because I don't want to take up too much of your time and you know, you please tell me if you're feeling tired and you need to stop. But I guess I'll start by just asking you if you, you know, to the extent that you're comfortable. Tell me about how you learned that you might lose your voice and what that was like. Did it happen all at once? Did it happen gradually? Did it happen one word at a time? Tell me about that experience.

[Casey Harrell]

I have all the time in the world. I have nothing to do for the rest of the day.

[Julia Longoria]

That's great.

[Casey Harrell]

Believe that it is obviously late where you are.

[Julia Longoria]

It is, but I have nothing else to do either. So I'm just hanging out. I've been looking forward to this conversation.

[Casey Harrell]

So, Robert, can you adjust where the computer cursor is?

[Julia Longoria]

Yeah.

[Casey 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. It is really funny and very unlikely that a three year old can translate for you.

[Julia Longoria]

Yeah, I guess. I am curious about the Cayce. Before all of this went down, like, what was your relationship to Words? 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.

[Lavonna Saxon]

What's that?

[Julia Longoria]

Always a smart ass.

[Casey Harrell]

It is just a flesh wound.

[Julia Longoria]

A Monty Python reference, a dark one. A man after my own heart. Classic.

[Casey 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.

[Julia Longoria]

I sense that. 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.

[Casey 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.

[Julia Longoria]

What's the first song you would like to sing again if you could sing again?

[Casey Harrell]

I would probably sing the song Baby Beluga from Raffi.

[Julia Longoria]

That song always makes me cry because my parents used to sing it to me.

[Casey Harrell]

It is the last song that I sang.

[Julia Longoria]

I wonder, like in you Talked about your 3 year old daughter being a translator for you. Oh, typing again. Forgive me. I'll.

[Casey Harrell]

Go ahead. I can listen in time and also compose what I am saying.

[Julia Longoria]

Great. 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.

[Casey Harrell]

My daughter is a master communicator. And they began to talk when they were five months old.

[Julia Longoria]

Wow, five months old. It's amazing.

[Casey Harrell]

I began to have symptoms of this disease when they were born so they had never seen Me without this dish 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.

[Julia Longoria]

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.

[Casey Harrell]

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

[Julia Longoria]

Then a whole nother three minutes and five seconds of silence.

[Casey 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.

[Julia Longoria]

Another four minutes.

[Casey 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 that you just had to do what you.

[Julia Longoria]

I'm struggling to follow.

[Casey Harrell]

One more.

[Julia Longoria]

Do you mean one more question?

[Casey Harrell]

I am feeling a little pressed for time, so it is not getting it because I am rushing through.

[Julia Longoria]

What Casey, you articulated to me is that 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 gotta be incredibly frustrating.

[Casey Harrell]

I am doing this to myself because I am still in a mindset that is for a normal person.

[Julia Longoria]

I see you're not actually rushed. You're just thinking at the rate you want to think. At this point, Casey has another coughing attack.

[Casey Harrell]

So part of the disease, and it is how most people die, is. Is because of their lives, not being able to breathe in air on their own. I see good fucking times.

[Julia Longoria]

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,

[Lavonna Saxon]

Julia, you're muted.

[Julia Longoria]

I just muted myself. Sorry. I was telling you this whole thing. Sorry about that. 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.

[Casey 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.

[Julia Longoria]

It was really, really lovely to meet you.

[Casey Harrell]

Very glad to meet you as well. And I will talk with you over email soon.

[Julia Longoria]

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, Casey 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. 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.

[Lavonna Saxon]

Yeah, so my name's Lavonna Saxon. I am a mom. I am Casey's wife and primary caregiver.

[Julia Longoria]

That's after the break.

[Narrator/Announcer]

Support for the show comes from Anthropic, the team behind Clawd. If you are the kind of person who goes down a rabbit hole and then stays there, or who keeps pulling at a question until it clicks, they say Claude was built for that kind of thinking. For developers that looks like Claude code. It runs in your terminal, reads your code base and can apparently take on things like writing tests, refactoring or debugging without you handholding it through every step. I texted my friend who uses Claude and told him I was making an ad about Claude and asked why I should use Claude and or Claude code. It's just really good at coding lol he said. What does that mean? I said with it I can build things. I wouldn't have time for myself or ability for myself in many cases, he said. Nice, I said. Anthropic says they are committed to not running ads in Claude. So when you are deep in something that matters to you, they say the answer you get is shaped by your question, not by someone else's advertisement taking you out of the deep work. Ready to tackle bigger problems. Try Claude for free at Claude AI unexplainable and see why some problem solvers choose CLOD as their thinking partner.

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[Julia Longoria]

could you tell me how you and Casey first met?

[Lavonna Saxon]

Yeah, sure. So I was working at Rainforest Action Network.

[Julia Longoria]

Casey and Levana met through work. They were both environmental advocates and they were supposed to co facilitate a talk with high schoolers.

[Lavonna Saxon]

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 days before, you know, had a great excuse of calling me to plan the presentation. He was so charming and eloquent and like 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, you know?

[Julia Longoria]

Am I hearing a boing? Boing? You are.

[Lavonna Saxon]

That means he is. His oximetry is dipping. I need to go check on him for one second.

[Narrator/Announcer]

All right,

[Lavonna Saxon]

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. A more serious situation.

[Julia Longoria]

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 realize that's always in the background for Levana. 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?

[Lavonna Saxon]

Yeah, I didn't. It was so gradual at first that I didn't really notice. And he noticed and said, hey, I feel like my voice is a little more gravelly. 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, huh? 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.

[Julia Longoria]

It was just silence.

[Lavonna Saxon]

Yeah, for a while.

[Julia Longoria]

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.

[Lavonna Saxon]

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 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. 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.

[Julia Longoria]

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.

[Lavonna Saxon]

Don't do this because you think you're going to be able to use it to communicate normally again. The technology is just not there.

[Julia Longoria]

They'd need to implant 256 electrodes in his motor cortex.

[Lavonna Saxon]

The motor cortex, it's more muscular.

[Julia Longoria]

It's not like it's trying to read his every thought. Right. It's trying to read. What is it trying to read?

[Lavonna Saxon]

His intended speech. I certainly do not ever want to hear Casey's unedited thoughts, 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.

[Julia Longoria]

They 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.

[Lavonna Saxon]

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. So that was everything. 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 since 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. Yeah, so

[Julia Longoria]

it's okay.

[Lavonna Saxon]

So, yeah, when they came. When they came at that, 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.

[Julia Longoria]

What did he say? What's the first thing he said? They.

[Lavonna Saxon]

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.

[Julia Longoria]

Oh, my gosh.

[Lavonna Saxon]

Which was, yeah. Really intense and also really weird.

[Julia Longoria]

Wow. 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 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, it takes

[Lavonna Saxon]

a really long time.

[Julia Longoria]

Yeah. I had never been so, like, simultaneously in awe of a piece of technology and so frustrated by it. Is that your experience or.

[Lavonna Saxon]

Yeah, I mean, I think I'm still mostly in awe. Right. Because it's like, what do they say? Happiness is directional.

[Julia Longoria]

Yeah. You lived through how it was before. Yeah.

[Lavonna Saxon]

If we went directly from, like, 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.

[Julia Longoria]

Yeah.

[Lavonna Saxon]

Yeah. To me, it's fantastic. Shortly after, you know, we discovered that we could use it functionally for daily conversation and work and everything, the team was able to put together, like, a button, basically, that Casey can click when he wants to. 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 research. Be research. Exactly. And we don't use it that often.

[Julia Longoria]

You don't use it very often.

[Lavonna Saxon]

Our lives are so overwhelmed with transactional conversations in terms of. Of just like, health and logistics of our everyday lives that the kind of.

[Julia Longoria]

The conversation, the button pushing conversation doesn't happen that often.

[Lavonna Saxon]

Yeah, exactly. The like, hey, 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.

[Julia Longoria]

I mean, it's hard to have those conversations even when you don't have als or have to communicate. Exactly.

[Narrator/Announcer]

Yeah.

[Lavonna Saxon]

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. Like, it's just a massive shift from that, you know?

[Julia Longoria]

Yeah, yeah. But there is a lot that's still not there.

[Lavonna Saxon]

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.

[Julia Longoria]

Really super wild.

[Lavonna Saxon]

Yeah. Whoa. Yeah. Just a quick call out. If there are dream researchers or brain, you know, sleep researchers out there, please get ahold 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 brainwaves change on screen when he's in deep sleep.

[Julia Longoria]

Do you remember, like, a dream statement that that was that he said or meant to say or whatever?

[Lavonna Saxon]

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 brain waves 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 like, okay.

[Julia Longoria]

Really?

[Lavonna Saxon]

Wow. Yeah.

[Julia Longoria]

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?

[Lavonna Saxon]

Oh, that's a great question. I unfortunately don't dream anymore.

[Julia Longoria]

Not enough deep sleep to get there.

[Lavonna Saxon]

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.

[Julia Longoria]

Now who's got time for dreams?

[Lavonna Saxon]

I'll get there.

[Julia Longoria]

We're.

[Lavonna Saxon]

We're working on it. But, but, but, yeah, my great question. I don't. I don't have a great answer.

[Julia Longoria]

This episode was produced by Me Joy Ellen and edited by Jorge Just and Joanna Solotarov. Erica Hoang did the mixing and the sound design. Fact checking by Melissa Hirsch. Our team also includes Meredith Haddonott, Bird Pinkerton, Noam Hassenfeld, Christian Ayala, Sally Helm and Amy Padula. If you want to learn more about Casey Harrell and Levana Saxon and you might even want to donate to help their family and 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@ unexplainable vox.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 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.