10 hours ago
1 ARTICLE AD
Meet Jon Nelson. He’s a dad, a husband, a coach and a professional who works in marketing. But underneath it all, he suffered – for years – from severe depression. His suffering was so great that he volunteered for an experimental treatment called deep brain stimulation, in which electrodes are permanently implanted in his brain. In this episode, you’ll hear from Jon about his life before the surgery, and you’ll be introduced to the neuroscience designed to save him.
Transcript
Laura Sanders: This podcast touches on mental illness, depression, and suicide. There are moments of darkness. There are moments of lightness, too. Please keep that in mind before you listen.
Jon Nelson is a guy who’s probably a lot like a guy you know. He lives in Newtown, a picturesque small town northeast of Philadelphia. He has three kids, a loving wife, a dog, a cat, and a bearded dragon named Lizzie. He works in marketing. He coaches his kids in softball and hockey, and he’s a ride-or-die Steelers fan. The Nelsons are, in fact, so perfect that they’re almost a caricature, like a sitcom family with a zany dad who’s fond of the phrase, “I’m going to give you some life advice.”
Jon Nelson: You know, we try to do the standard sit down and cook together and have meals together. We’re the messy house in the neighborhood with basketballs outside and, you know, we’re constantly playing and doing stuff like that. But, you know, truly we like to spend time together.
Sanders: But the view from the outside was a lot different than what Jon felt on the inside. On the outside, Jon lived a charmed life, but inside, he had been fighting with everything he had to stay alive for years.
Jon: I would literally read a newspaper article about a plane wreck and I would have instantaneous, like, “Oh, like why couldn’t I have been on that?” Right? Or, you know, you, somebody died in a car wreck, like, “Why couldn’t that have been me?”
Sanders: Jon had what’s called “treatment-resistant depression,” and it made his inner life hell.
Jon: I’d be the one standing up in front of everybody leading the champagne toast and then I’d be driving home and wanting to slam my car into a tree.
Sanders: Jon’s disease was close to consuming him. He was in such misery that he signed up for an unconventional last-ditch shot at relief. He was going to get electrodes implanted in his brain. It’s a deeply invasive procedure, one that aims to electrically tap into the brain and change the way the human mind works.
There were a lot of risks and no guarantees here. But he had tried everything – antidepressants, therapy, you name it. Scientists had been developing this experimental treatment for years now, exploring how to aim their electricity at the right spot and figuring out whose brains might respond. This approach isn’t approved by the FDA. But for Jon, it was his last shot.
Jon: I was excited for the surgery, cause I wanted to die.
Sanders: Jon has struggled with suicidal thoughts for years, but the gravity of what he was about to do struck him the day before his surgery. That realization came from his son.
Jon: I was dropping off my kids in New York City. We were meeting my wife’s family, who came into Manhattan to pick up the kids, to take the kids. And my youngest, he is my emotional one. My middle son doesn’t need a hug. You know, my, my youngest son would climb back up into my wife’s womb if he could, you know? He’s that kid. And he just hugged me, and he was like, “Dad, am I gonna see you again?”
And I was on the corner of 37th and 3rd Avenue. I knew exactly where I was. And I was like, “Oh man.” Like, it was like one of those moments where I was like living it through his eyes, you know? And I got scared for the first time.
Sanders: Jon hugged his kids around 5 p.m. on August 21st, 2022. Twelve hours later he was getting wheeled into surgery. Surgeons drilled two small holes through the top of his skull, one on each side. A long thin wire was threaded through each hole. The ends that went deep into Jon’s brain were capped with electrodes. And they landed around eye level. In the days after surgery, doctors used these wires to send tiny pulses of electricity into Jon’s brain.
The doctors and researchers wanted these electrical pulses to change the way Jon’s brain worked. They wanted these electrical pulses to save Jon’s life.
I’m Laura Sanders and I’ve been reporting on neuroscience for over a decade. And this is The Deep End, a podcast from Science News.
Over the following episodes, I’m going to tell you the stories of Jon and some other incredible people who had life-threatening depression and who now have electrodes permanently implanted in their brains. You’ll hear from Amanda, a thoughtful and quiet artist in New York City, who expresses herself through Technicolor drawings.
Amanda: When I told my friends and family, I think the main response I got was surprise, because none of them had heard of it before. But I did have one set of friends where I was like, “Hey, guys, gonna get a brain implant. I’m a cyborg.” And they didn’t know what to make of that.
Sanders: You’ll hear from Emily, a philosophical thinker who has a PhD in psychology and knows a lot about the human mind, including her own.
Emily: I think the self is an activity. I think this self is a choice. And I think, you know, again, I do believe with depression and my experiences, it really altered who I was. And of course, it’s like this insidious progress. It’s not just, one day you have depression.
Sanders: You’ll hear from a new father, a man who would like to remain anonymous, because the reality is, we live in a world full of stigma, both for depression and its treatment. And you’ll hear from Jon and the doctors and neuroscientists who are pushing this research forward.
Jon and the others all lived very different lives. But their lives share common threads. They’ve all suffered immensely. They’ve all confronted stigma around their depression and their treatments. They’ve all grappled with big questions of who they are and whether these artificial pulses of electricity change that. And they’ve all been given the ability to feel emotions that have been absent from their lives for a long time.
This is not a standard miraculous medical cure sort of story. It’s not that simple. Instead, this is a story of mental health, futuristic brain science, stigma, philosophy, ethics, all of that. But above all, this is a story of hope. Hope for Jon, hope for his family, and hope for the millions of people around the world with severe depression.
It won’t surprise you to hear that we’re living in the midst of a mental health crisis. Depression rates are at an all-time high. The pandemic, coupled with a health care system in free fall, has left so many people reeling. In the United States, an estimated 2.8 million people have the hopeless sounding diagnosis of treatment-resistant depression. After years of struggling, Jon fell firmly into that category.
Jon: You know, I’ve gone through a journey of a decade plus of, you know, two residential treatment programs, three partial hospitalization plans, two inpatient intensive outpatient programs. I did transcranial magnetic stimulation, medical cannabis, ketamine nasal spray, same thing. Every single medication you can imagine. All of this just trying to find relief and nothing worked.
Sanders: He really has tried it all. In fact, to qualify for the experiment, he had to have electroconvulsive therapy. That’s when a strong electrical current is run through the brain, causing a controlled seizure. The procedure works for some people, but it didn’t work for Jon. That ordeal left him with intense and upsetting memory loss, and no relief. Jon eventually found his way to a clinical trial being run by scientists at Mount Sinai Hospital in New York. The technique they use is deep brain stimulation, or DBS.
Here’s the idea. Our brain cells talk to each other with electricity. Electrical signals – it’s a phrase that sounds technical and boring, but these signals are at the heart of our memories, our emotions, our movements, even our consciousness itself. Literally every thought we have is created by nerve cells in our brains, firing off electrical signals. Deep brain stimulation can change those conversations. Tiny jolts of electricity can somehow reset and repair brain circuits that have gone off course. It sounds pretty out there, but treating depression with DBS stands on solid scientific ground. The approach has been pioneered by Helen Mayberg, a neurologist at Mount Sinai in New York.
Mayberg: We’re retraining, in essence, or helping, the person’s neurons to kind of reorganize, to work together in a way that they haven’t in a while.
Sanders: I want to stop here and acknowledge again that this is all an experiment. DBS is not an FDA-approved treatment for severe depression. In this story, we’re talking about research, not settled clinical care. Scientists have done their best to make sure the experiments are safe, but there are no promises here.
More than a decade ago, I heard Mayberg talk about results from her very first DBS patient, a nurse with severe depression. A video showed a transformation. The nurse went from being withdrawn to laughing out loud in a matter of seconds. The science was fascinating, but what captivated me the most was wondering what it felt like to be that woman. To go from feeling like there’s a big empty void inside of you, to looking around and laughing. I caught up with Mayberg recently, and we got to talk about the ups and the downs of DBS research since those early days.
Mayberg: When you step outside and you have the privilege of having your science have this kind of feedback from the people you impact, it actually changes the questions you think are how you want to spend your time. It wasn’t my first rodeo when we did those implants. I had been working on depression 15 years before that. And then I trained as a neurologist. I have, you know, I’ve, I’ve been around. And you watch the evolution of science.
Sanders: Through Mayberg, I came to know Jon and his wife Barbara, and his vibrant, hilarious children. Over the past year or so, Jon and I have talked on Zoom, we’ve texted, we’ve emailed, and he graciously invited me to crash a Sunday at his house. Okay, I’ll start with his garage. It is packed. There are hockey sticks, softball catcher pads, golf clubs, balls of all sorts, bikes, inline skates, a mesh goal, and a super cute white motor scooter. And did I mention yet that he really, really loves hockey?
Jon: Ice hockey has been an amazing passion for me my whole life.
Sanders: Jon’s love of sports has multiplied with his kids. He helps coach his daughter’s softball team and his two sons’ hockey teams.
Jon: By far, my favorite part about coaching is figuring out what each individual kid needs. I love it. I love the emotional side of the game. I love figuring out what they need individually to grow as a player and as a teammate and being able to coach to that kid. I love it.
Sanders: I’m a coach too. I coach my daughters’ soccer teams. So when Jon tells me about how good it feels to connect with kids and the joys of being part of a team, I completely get it. I have felt the same way. But I also know that he is next level with it all.
Jon: You know, I have some fun things that I do. I have some -isms. My -isms are, you you know, “Nobody touches the goalie,” right? Our goalie’s the number one person. They all know that. I want the parents at the end of the season to say, “You know, it was a wonderful season. My kid enjoyed the game. Not only did he grow, he’s excited to come back next year.” That’s success for me.
Sanders: When you listen to Jon talk about hockey or softball or his family or even his job, you hear the public Jon, the hypersocial, high-functioning guy everybody expects him to be.
Jon: I was always an extreme extrovert. People call me the mayor of the town, right? I’m the one who’s organizing the plans. I’m the guy who’s kind of in charge of the group, in a fun way, right? Like, I’m not a control freak, but it’s just, “Let’s go, guys. Let’s do it.” You know?
Sanders: This zest for life, this up-for-anything vibe, that’s what drew Jon’s wife Barbara to him.
Barbara: He was, like, so outgoing and fun and friendly in a way that kind of balanced out some of my own like social anxieties or insecurities, and so I could always like bring him to a function and just let him do the talking and kind of sit back and be my introverted self. So you know, and he’s just fun, and he had, like, such an enthusiasm for doing everything and anything. And I started to do things that I never did before, like go to basketball games and hockey games and Penn State football games and the Indy 500 and like all sorts of things that I just never was exposed to. He was just so fun. He was always up for hanging out with people. And it just like felt like my world like got bigger when I met him.
Sanders: But as they grew older and settled into their family life, Barbara started to notice Jon struggling more.
Barbara: One of his like strategies for coping with it was to stay as busy as possible and then it would be like a crash and burn. So he would like get up, go right to work, work all day, come home, be with the kids, like, so fun and play with them so much and then just kind of crash towards the end of the day. And that was sort of like maybe when I started to feel like the behavioral piece was like affecting our family dynamic, where there’s this kind of intensity which now I see as like covering up how he was really feeling and just trying to push through it.
Sanders: Jon kept pushing, keeping up appearances on the outside. But on the inside his depression was becoming a private hell. Eventually Jon’s world got smaller.
Barbara: He would be up in bed with the lights out, or watching, like, endless hours of television. And it was very unpredictable because, you know, you just never really know. Is he asleep? Is he watching TV? Should I knock on the door? Should I bother him? And then there’s a whole life going on downstairs.
Sanders: Jon saw it, the problem. He just couldn’t do anything about it. He was stuck.
Jon: And I just started taking a back seat. You know, I started not wanting to go out with folks as much. Little things like that. I tried to, I would, you know, if we had a family event going on, I’d try to maybe not participate in all of it. So the small patterns of poor behavior of depression happen. Like I said, that isolation, there’s a little bit of lying involved ’cause you just wanna get out of things, right?
Sanders: Over the last five years of his growing depression, Jon’s fantasies of dying grew more and more constant. He was fighting tooth and nail to keep showing up for his family, for his teams. Jon’s fight shows the misery this kind of depression creates. Here’s Mayberg.
Mayberg: I think part of why this kind of treatment-resistant depression is so painful and so associated with high rates of suicide is that you’re suffering, you know exactly what you’re trying to get away from, and you can’t move. And if you do move, it follows you, there’s no relief. And he described that, I mean, that, to him, is the poison. He used every ounce of energy, every week, for one purpose – to go and coach at his kids’ games. That gave him more pleasure than anything, and he was able to hold on to that and actually scratch and claw and move and use the energy in the week to get there.
Sanders: Until he couldn’t stand living like that anymore. Right up until that moment on the night before his brain surgery, when Jon’s son hugged him and asked if he would see him again.
Jon: And I was on the corner of 37th and 3rd Avenue. I knew exactly where I was. He just hugged me and he was like, “Dad, am I going to see you again?” And I got scared for the first time.
Sanders: Remember, this is the guy who had been longing for death. The guy who paid attention to the trees on his way home from work. The guy who knew which trees would be deadly if he crashed his car into them. And here he was on the night before his surgery, still trying to stay in the game. But for Jon and his family, this wasn’t a game. The stakes were much higher. This was life or death.
On next week’s episode, we’ll step back and learn what Jon’s depression felt like in his mind and in his body, and what brought him to that street corner in New York City.
Jon: So, for me, my depression was very physical, extremely physical. I felt it in every single cell of my body, everywhere, all the time. It never left. And I ended up calling it poison.
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. I’m Laura Sanders. If you liked this podcast, tell your friends. If you really like this podcast, leave us a review. It helps the show a lot. Send us your questions and your comments at podcasts@sciencenews.org.
The Deep End is a production of Science News. It’s 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 1 credits
Host, reporter and writer: Laura Sanders
Producer: Helen Thompson
Mixer: Ella Rowen
Project manager: Ashley Yeager
Show art: Neil Webb
Music: Blue Dot Sessions
Sound effects: Epidemic Sound
Additional audio: Luke Groskin
This 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.
If you have questions, comments, or feedback about this episode, you can email us at podcasts@sciencenews.org.
