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After brain surgery, Jon Nelson and other volunteers are tasked with rehabbing their brain. This job is harder than it might seem, as people re-learn how to navigate the world with a range of emotions that they havent felt in a long time. Well hear from a psychologist who describes the shift from day-to-day survival toward longer-term thinking, planning and dreaming about whats next. Well also hear Jons perspective on whether DBS gives him artificial happiness. Spoiler alert: It does not.TranscriptLaura Sanders: This episode deals with mental illness, depression and suicide. Please listen with care. Previously on The Deep End.Emily: Yeah, so I laid low for a period of time. It was pretty smooth. And I just noticed that kind of feeling of like almost itchiness and restlessness.Amanda: And then by Wednesday, the fifth day after the surgery, thats when it got completely better. And it stayed that way ever since. But the actual relief, like, the relief, I cant even describe the relief. Ive never felt relief so profound in my life. It was like, I dont know, you just get used to living in pain and then when the pain is all of a sudden gone, youre like, What is this?Jon: Overnight, I was healed. I have been in remission from depression since the moment they have turned that on.Sanders: On this podcast, weve heard about some big transformations. People who have had brain surgery and for the first time in decades are able to live their lives without depression. But their relief comes with tradeoffs. Today were going to get into what its like to live with electrodes in your brain, wires in your neck, and battery packs in your chest. Forever. Welcome to the Deep End. Im Laura Sanders.Patient 001: The only thing Ill slightly complain about, and its very vain, I only wish the batteries on your chest didnt show up so much.Sanders: Thats Patient 001. Again, youre hearing his words, but not his voice. He now lives in a hot place near the ocean. And because he has two sets of implanted electrodes, he has two implanted battery packs, one on each side of his upper chest. Theyre each about the size of a deck of cards.Patient 001: It just sucks I cant take my shirt off at the beach and not be self-conscious about that.Sanders: The devices in his chest can also feel alien to him, like theyre not part of his body. Thats especially true as hes falling asleep.Patient 001: At first its alien to you, right? I sleep face-down so like I have, I dont know why, I was just putting my hand on it to, like, just be comfortable.Sanders: Amanda has a strained relationship with the device too. It feels like it doesnt quite belong.Amanda: I dont like the idea of it. I dont like how it feels. Like, every time I accidentally touch the wire in my neck, Im like, Ew, ew, I dont like it. And its getting better, but sometimes I can still feel the thing in my chest just like sitting there. Its unpleasant to have a foreign object in you.Sponsor MessageSanders: And then theres the charging. Its annoyingly low-tech. Its done with a wireless charger draped around the neck, and it takes about 40 minutes. Amandas charger shows only 10 percent increments and the screen is on for only a minute before it locks up without indicating that the charging is done. And one of the worst parts? The scientists are monitoring it all.Amanda: They like know every single thing about me. Like, the data scientist was showing me a graph of when I charge my battery and how full I keep it. Hes like, Youre the most consistent person in the study, and we really appreciate it. That was his point. I was like, Darn, you guys know everything.Sanders: Are you monitoring my batteries?Amanda: They are.Sanders: The researchers very close attention to batteries and charging makes sense. Imagine if your mental health depended on a full charge, or if you had to worry every time a storm was predicted or the power grid got stretched too thin. Jons wife Barbara thinks about this.Barbara: I always worry, like, what if theres an apocalypse and like we dont have electricity anymore? Whats that gonna look like? But I guess well be dealing with the apocalypse, so itll be fine.Sanders: In addition to concerns and annoyances about charging, there are lots of other time-consuming tasks that these volunteers complete as part of the research. Surveys, mood ratings, video journals. Twice a day, Amanda clicks what looks like a TV remote at home to collect brain data, and that goes to her home computer. She then uploads it to the hospital server. When I visited her at her apartment, she showed me how it all works.Amanda: Yeah, so you have this little remote. I actually have it sitting right here. It looks like a TV remote. You pair it with your device and then you also pair it with your computer. So it sort of acts as the go-between between your device and your computer. So youre like, Im Bluetooth-enabled.Sanders: But the tradeoffs are worth it to Patient 001.Patient 001: If you ask anybody thats been through a real severe depressive episode, if you tell them, Listen, if I flip a switch and youre good and youre yourself again, you dont want to die, right, like, every day of your life? And you take pleasure in the things that you used to take pleasure in, yeah? But you have this, like, plastic thing on your, on your chest. Would you take that trade? Nine out of, probably 10 out of 10 will say, Yeah, its a no-brainer.Sanders: DBS doesnt always work. And it can come with risks, both from the surgery and the brain stimulation. Today, more than 260,000 people have been implanted with DBS devices. But like any medical procedure, the technique can go sideways. Electrode leads in the brain can break, the chest controller can fail, batteries can die, infections in both the head and the chest are a risk, as is wire-tethering. Thats a painful condition, also called bowstringing, where scar tissue grows around the wire in the neck.The risks are a lot to ask of someone volunteering for an experiment. And thats what this is, an experiment. And because its an experiment, scientists are tracking everything, which meant that these volunteers had to make lots of trips to the lab and handle lots of checking in. Jon takes the train from his house just outside of Philadelphia to the lab in New York City a lot. Its routine now. He goes so often that he knows exactly which crack in the sidewalk to stand by as he waits for his train at the New Jersey Transit Station. On one of his visits, a researcher had put a mess of electrode wires on his scalp to eavesdrop on his brain. The scientists doing the measurement casually mentioned that his implanted leads were zipping 130 pulses of electricity into each side of his brain every second.Jon: So then I come home, this is the fun part with my daughter, I said, Alright lets do some math, you know. Lets figure this out. And so what it comes down to is, I have 22 and a half million electrical pulses per day to my brain, and it keeps me alive.Sanders: After Jons surgery, when the electricity started flowing, he was given a new task, rehabbing his brain. Jon was initially dismissive of the new job. He felt fantastic, cocky almost, and he wasnt convinced that he needed to work hard on rehab.Jon: I was like, What are you talking about? I was like, Dude, Im not sick anymore. Like, Im not diseased. Im great, you know. I got this.Sanders: But about six weeks after his surgery, everything fell apart.Jon: So I started not feeling good. And so the entire time after surgery, when Im feeling good, Im like, is this real? Like, is this too good to be true? Is this adrenaline? Is this, like, what is this? And like even my wife, like, shes like, Dude, this is amazing. But you know, shes scared. Like, this is literally traumatic. Like, going through major depressive disorder at this level is trauma. Its horrific. We both have PTSD for sure. And immediately I start feeling bad. And Im like, Oh my God. Im like, I feel it. Like when I feel the depression, like I feel it in my body, like any physical sensation that I have, even if its positive, it triggers me, right? Because when I feel anything, Im like, Oh my God. So I start, I start feeling bad. I start immediately overeating, immediately oversleeping, immediately hiding behavior. My wife, Ill never forget it, was like, Hey, we got an appointment at the school for my son at 10 oclock. I was like, Cant do it. I was like, I got something going on. I didnt have anything going on. But that immediate behavior overnight happened.Sanders: Jon knew that as part of the study protocol, around the sixth month, researchers would turn off his stimulation. This looming shutdown had him intensely worried.Jon: I was freaked that they were turning it off because I knew that was part of the trial. I was very anxious about that because clearly I dont want to feel like dying, right? Its pretty amazing not to feel like dying, you know. Its a simple thing. I say to my friends, Im like, Major depressive disorder, one star, dont recommend, not fun. And I was like, Guys, like, oh my God, like Im so anxious about it being turned off.Sanders: His recent shift into overeating, apathy and general malaise alarmed him so much that on the night of October 6th, about seven weeks after his surgery, he sent an email to a Mount Sinai psychiatrist asking if his stimulation had been turned off earlier than planned.Jon: Immediately I sent an email to the lead psychiatrist of this trial and I said, Did you guys turn it off? Like is it working? Like, give me a heads up. You just start completely freaking out.Sanders: He read me the email. Its polite, but there are definite undertones of low-key panic.Jon: A quick question for you. My behavior has been alarming to me since Sunday. My depressive behavior, not depression, but the behavior I usually do when Im depressed, is at max mode right now. I dont feel the depression or suicidal thoughts, but since Sunday, all of these have been an overdrive. I know the pacemaker device gets turned off around the six-month mark for the sham portion of the test. Is there an earlier part of the program where it gets shut off too, such as now, and that is also part of the experiment? Even if it was shut off, could you even tell me that? I understand that there are ups and downs during this phase, but this is a major down, mood-wise, and its putting me in low spirits and not knowing what to expect, especially as I am about to enter my going back to work phase and I am regressing. I really appreciate your perspective. Jon.Sanders: An hour and a half later, the email back was clear. Your device is absolutely on. This sounds like a typical post-DBS recovery phase where you may be relearning to deal with stress and normal negative emotions. Jons psychologist would address it with him at their next appointment. The message was definitely, Dont panic, but that message didnt really sink in for Jon. Jons worry about a relapse was legit. People being treated with DBS for depression have experienced relapses when their devices accidentally stop working. A battery fails or a wire breaks, and their relief is gone. I talked with psychologist Shannon ONeill who works with Jon and other people treated with DBS at Mount Sinai. And she says worries over spiraling dark moods definitely come up.ONeill: We often talk significantly about the difference for them of how they can distinguish between depression and also just normal everyday sadness. Thats been something thats so significant. Individuals well see post-operatively, especially with depression, is they appreciate natural negative emotions that can come upon them without it equating to, This is another depressive episode.Sanders: This is the hard work, she says. People who have lived with severe depression for years need to relearn how to recognize and tolerate garden variety emotions that include sorrow. Its called distress tolerance, and its hard.Jon: So what I learned through this rehab phase of mine that I didnt understand is how to learn to live with being sad. I didnt know how to do that because it was so traumatic for me. This disease has caused trauma in me for sure. Its caused trauma in my wife, my family, all of us. And so feeling that first twinge of sadness was the first time where I was like, ah, thats what they mean.Sanders: ONeill has seen regular life stressors send a person down this path before.ONeill: They might get COVID or they might have the flu that mimics depression and they fear relapsing.Sanders: Yeah, so the idea is that its not permanent, that you can, this is a blip, you know.ONeill: Its a blip. Its, negative emotions come and go, just like positive emotions come and go. It can be passing and not ever present.Sanders: Her description reminds me of the weather. We can spend mornings under heavy cloud cover. I live in Oregon and I often do just that. But then sometimes we luck out with a full-blast sunny afternoon. Its all temporary. Understanding that feelings are transitory, that ups and downs happen, is something people with severe depression havent practiced. They couldnt have practiced. Theyve been perpetually stuck under heavy cloud cover. Emerging into an emotional landscape with those ups and downs can be unsettling. Emily Hollenbeck, whose DBS surgery was in 2021, says her recovery took time.Emily: Yeah, my brain is becoming more able to trust. Like, Ill have a bad day or even something really traumatic may happen, but there isnt that same sense of foreboding, like, Oh no, how will how will I cope? Im learning to trust that that sense of, Ill be okay.Sanders: But its a process.Emily: Id say the biggest thing is like being able to see myself in a positive light and to kind of have a relationship with myself. I know that sounds very like ooey gooey in a way, but realistically, you know, growing up, I never had that with my family environment. And now that Im relearning it and intentionally, like this book under my computer that says Fierce self compassion, like, I have the time and energy now to pursue that kind of healing.Sanders: Its almost like shes watching herself from outside of her life. Thats something she couldnt do before.Emily: And I guess part of it, too, is just understanding, you know, that when really stressful, negative things happen, like, the self-awareness and the ability to think, like, Okay, this feels really terrible. Like, somehow, with depression in my deepest states, you cant really have that sense of metacognition or distance, because it really feels like the world is crumbling down around you. And now I can think, like, Okay, it feels like the world is crumbling down around me. And thats a legitimate feeling. But I can contextualize it in a way, with depression, depression, its like you cant escape the snow globe. And this is much more, I can have a compassionate, but more almost, like, critical-thinking perspective about what Im feeling.Sanders: Amanda had a similar challenge. One of her pictures drawn after DBS shows a cartoon Amanda wearing a rainbow shirt. Shes standing high on a ledge of bright green grass, blue sky overhead, but shes looking over the edge to the darkness below.Amanda: And the second picture was about being afraid, like feeling, feeling like I had been pulled out of this giant pit, and I was worried I was gonna fall back in it again.Sanders: But she hasnt fallen back in.Amanda: I struggle a little bit with thinking about the future. I, because I always wanted to die. I always, there never was a future. I didnt want the future. I didnt want any parts of it. And now there is one. And now its like, I almost dont know how to fill that future. Like, I dont know how to project forward what it might be like. I drew this picture, actually. Its an open book and Cartoon Amanda is sitting on one side. And the next page says, Next chapter. And in the first drawing, theres a tombstone, because the next chapter was death. But in the second drawing, Cartoon Amandas sitting there and shes got a pencil in her hand, because the next chapter is blank, and shes thinking about what to do with it.Sanders: Her experience mirrors some experimental data. The studies that have been done suggest that when people with DBS recover from depression, they generally stay well. Neurologist Helen Mayberg and her colleagues found that about 60 percent of patients had sustained improvements. Those lasted between three and six years after surgery. In a longer-term study, most of a group of 28 people who had DBS for major depression or for a type of bipolar disorder, saw benefits for more than eight years. Everyones path is different, but ONeill says there are some common trajectories. Once the day-to-day recovery kicks in, patients get to be a bit more broad in their hopes.ONeill: When I see individuals starting to shift towards more constant, confident recovery, their future timeline really starts to expand in their vocabulary with me. Its less about the day-to-day behavioral activation, and lets chip away at doing exercise, brushing your teeth, doing all of the fundamental rehab towards, whats next in life? What do I actually value? What do I want more of? And they get to be, greedy is the wrong word, they get to be excited and open their minds and their hearts to other things outside of just pure survival.Sanders: Jon is out of the pure survival mode, but hes still figuring out what comes next.Jon: I mean, its come along to the fact that I called them the other day, you get worried, right? Like I probably had another twinge of sadness. Im still working on that distress tolerance. And I still send a quick email like, Yo, did this thing turn off? Are we in a good spot? They can look at it all remotely. Its all controlled by Bluetooth. So then they literally can look at my, they can look at the device, basically say its working fine, and they can analyze my brain waves. They have the ability to determine and know kind of what state Im going into, like, am I going into a depressive state or not? Like, the science is surreal.Sanders: Im going to shift here to a somewhat unsettling idea. The idea of a machine forcing happiness on us or taking away sorrow. That kind of mind control is creepy. We want to believe that our feelings originate inside of ourselves, that we are the ones in charge here. So the idea that artificial happiness can be created by a computer that controls electrodes in our brain hooked to wires that snake down our necks, no thank you. But what I hope is clear by now is that these implants do not do that. They dont make a person feel artificial joy. Instead, they open the door for a range of emotions. Heres ONeill.ONeill: And DBS is not going to give you happiness. Its not going to just be a device that turns on happiness 24/7. Its to get you out of the hole and be on solid ground. And so we have a baseline where you have the opportunity to have the range of happiness but also the same range of sadness too, with it being safe.Sanders: The capacity for emotions, thats what this treatment seems to restore. Its not some sort of Eternal Sunshine of the Spotless Mind movie scenarios where all the bad and hard stuff gets erased.Jon: So has the device made me happy? The device has made me disease-free. Thats all that I needed it to do. It has not taken away the typical emotions in life that Im going to have forever. And those are happiness, sadness, anger, Im going to have those. And Im going to have to learn how to live with having those. Im learning to get better, that, Im not there. I dont know if I ever will be there. I will, itll be something that I have to deal with for the rest of my life. But it, you know, its, in the other aspect of it, too, is did it make me happy? The procedure made me happy because Im now disease-free, but it did not take away the emotions, and thats what I have to learn to deal with and live with.Sanders: His emotions, all of them, including sorrow and including happiness, are, as he would say, present. Overcoming misconceptions about what this technology can and cant do is yet another burden for Jon and others. The patients I spoke with were incredibly candid about their experiences. They graciously tolerated my questions, all my emails, but being open about their medical condition can exact a steep price.Coming up on the next episode, were going to get into the stigma that comes with both mental health disorders and the treatments people turn to.Jon: The amount of times that I have had people say to me, Snap out of it. Dude, you got a great life. Youre a succeeding professional. You got great kids. Your wifes awesome. Like what do you have to be depressed about? What do you have to be depressed for?Sanders: If you or someone you know is facing a suicidal crisis or emotional distress, call or text the 988 Suicide and Crisis Lifeline at 988. This is the Deep End. Im Laura Sanders. If you liked this podcast, tell your friends, or leave us a review. It helps the show a lot. Send us your questions and comments at podcasts at sciencenews.org. The Deep End is a production of Science News. Its based on original reporting by me, Laura Sanders. This episode was produced by Helen Thompson and mixed by Ella Rowen. Our project manager is Ashley Yeager. Nancy Shute is our editor in chief. Our music is by Blue Dot Sessions. The podcast is made possible in part by the Alfred P. Sloan Foundation, the John S. James L. Knight Foundation, and the Burroughs Wellcome Fund, with support from PRX.Episode creditsHost, reporter and writer: Laura SandersProducer: Helen ThompsonMixer: Ella RowenSound design: Helen Thompson and Ella RowenProject manager: Ashley YeagerShow art: Neil WebbMusic: Blue Dot SessionsSound effects: Epidemic Sound, Freesound.org, Mayfield Brain & SpineAdditional audio: Luke GroskinVoice of Patient 001: Nikk OgasaThis podcast was produced with support from PRX, the Alfred P. Sloan Foundation, the John S. and James L. Knight Foundation, and the Burroughs Wellcome Fund.
