WEBVTT - A Sneak Preview Of Maya’s New Book 0:00:14.956 --> 0:00:33.316 Pushkin Hay Slight Changers, Happy New Year. We in the 0:00:33.356 --> 0:00:36.236 Slight Change family have been hard at work preparing new 0:00:36.316 --> 0:00:39.156 episodes for you in twenty twenty six and I can't 0:00:39.196 --> 0:00:42.476 wait for you to hear the lineup. But first, today 0:00:42.676 --> 0:00:46.036 is a very special day because my book, The Other 0:00:46.156 --> 0:00:49.796 Side of Change, Who We Become When Life makes Other Plans, 0:00:50.196 --> 0:00:53.916 is officially out. I'm sharing a sneak peek of the 0:00:53.956 --> 0:00:57.036 audiobook with those of you in the Slight Change community. 0:00:57.716 --> 0:01:00.436 The book features stories you've never heard on this show 0:01:00.716 --> 0:01:03.436 and pairs them with cutting edge science to help you 0:01:03.556 --> 0:01:08.076 navigate change with less anxiety and a greater sense of possibility. 0:01:08.756 --> 0:01:12.716 You get your copy today wherever you like to buy books. Okay, 0:01:12.956 --> 0:01:15.076 now on to the beginning of the Other Side of 0:01:15.156 --> 0:01:22.916 Change preface. There are moments in each of our lives 0:01:22.996 --> 0:01:27.196 that seemed to change everything. A relationship ends without warning, 0:01:27.676 --> 0:01:31.556 a close friend gets into a serious accident. Routine medical 0:01:31.596 --> 0:01:35.476 tests reveals something concerning. Secrets about a loved one come 0:01:35.516 --> 0:01:39.796 to light. A job is lost. As our lives veer 0:01:39.876 --> 0:01:42.996 off course, it can feel like time is dividing into 0:01:43.036 --> 0:01:46.596 a before and an after. I had one of these 0:01:46.636 --> 0:01:50.236 experiences recently. My husband and I were on the cusp 0:01:50.316 --> 0:01:55.116 of becoming parents after years of navigating various obstacles and disappointments. 0:01:55.876 --> 0:01:59.876 We were brimming with relief and excitement, emotions that I 0:01:59.876 --> 0:02:03.796 imagine many parents to be feel. As we received one 0:02:03.836 --> 0:02:07.276 piece of good news after another, we allowed ourselves to 0:02:07.316 --> 0:02:10.516 conjure up cozy images of life life with our future child, 0:02:11.156 --> 0:02:14.556 snuggling in bed and reading Calvin and Hobbes together, or 0:02:14.596 --> 0:02:17.836 breaking out into a silly dance in our kitchen. We 0:02:17.836 --> 0:02:23.396 were finally starting a family, until suddenly we weren't. I 0:02:23.436 --> 0:02:25.836 still remember how I felt when I heard the news. 0:02:26.596 --> 0:02:30.716 Anxiety polled in the pit of my stomach. Ordinary sounds 0:02:30.796 --> 0:02:33.276 like the closing of a door or a stranger's voice 0:02:33.516 --> 0:02:36.676 were jarring, as if the volume of the outside world 0:02:36.716 --> 0:02:40.516 had been dialed up. My colleagues at work, unaware of 0:02:40.556 --> 0:02:43.316 what was going on, were emailing me about assignments that 0:02:43.356 --> 0:02:47.396 were due. I struggled to comprehend how everything was just 0:02:47.476 --> 0:02:51.876 moving forward as usual. I knew my situation was not unique, 0:02:52.196 --> 0:02:56.596 but somehow that awareness couldn't penetrate the visceral, chilling feeling 0:02:56.796 --> 0:03:00.516 that I was alone. As the weeks and months passed, 0:03:00.636 --> 0:03:03.356 what disoriented me the most was the loss of control 0:03:03.436 --> 0:03:07.316 I felt in everyday life. It's easy to overestimate the 0:03:07.356 --> 0:03:11.236 degree to which we influence how things turn out. Psychologists 0:03:11.236 --> 0:03:14.716 call this the illusion of control. When a bad thing 0:03:14.796 --> 0:03:19.796 happens unexpectedly, it can shatter that illusion. As my detailed 0:03:19.796 --> 0:03:23.876 plans unraveled one by one, I became agitated by all 0:03:23.916 --> 0:03:27.916 the uncertainty that now lay ahead. There's a research study 0:03:27.956 --> 0:03:30.316 showing that people are more stressed when they think they 0:03:30.356 --> 0:03:33.356 have a fifty percent chance of receiving an electric shock 0:03:33.956 --> 0:03:36.636 than when they think they have a one hundred percent chance. 0:03:37.476 --> 0:03:41.276 This finding resonates deeply with me. I like knowing how 0:03:41.276 --> 0:03:45.276 the story ends. Whenever I faced a setback or a failure, 0:03:45.676 --> 0:03:48.636 my instinct has been to jump into action and to 0:03:48.716 --> 0:03:53.116 try to reduce any uncertainty by outworking the challenge. But 0:03:53.196 --> 0:03:55.356 what would it even mean to work harder? In the 0:03:55.396 --> 0:03:59.756 context of trying to become a parent, I'd often heard 0:03:59.796 --> 0:04:02.636 that while we can't control what happens to us, we 0:04:02.836 --> 0:04:06.636 can control our reaction to what happens. It's meant to 0:04:06.676 --> 0:04:10.796 be an empowering mantra, but as I with my negative emotions, 0:04:11.116 --> 0:04:14.796 it registered as a platitude. Sure, it'd be great to 0:04:14.876 --> 0:04:18.236 somehow react in a more constructive manner, but how was 0:04:18.276 --> 0:04:21.036 I supposed to go about doing that. It's not like 0:04:21.036 --> 0:04:22.996 I could flip a switch in my brain that would 0:04:23.036 --> 0:04:25.996 make me feel more at peace, or more hopeful, or 0:04:26.036 --> 0:04:29.436 more certain about what to do next. I wanted to 0:04:29.476 --> 0:04:33.276 figure out how exactly to think and feel differently about 0:04:33.276 --> 0:04:37.956 my situation. As I sat there, isolated in my sorrow 0:04:38.036 --> 0:04:41.716 and confusion, I sought to connect with others who'd navigated 0:04:41.756 --> 0:04:45.876 big life disruptions. What began as a series of informal 0:04:45.916 --> 0:04:50.316 conversations eventually grew into a podcast called A Slight Change 0:04:50.356 --> 0:04:54.476 of Plans, which I started in twenty twenty one. Each 0:04:54.556 --> 0:04:57.236 episode was an opportunity to have a one on one 0:04:57.316 --> 0:05:01.596 conversation with someone who'd gone through a life altering change. 0:05:01.636 --> 0:05:05.076 A young self proclaimed health nut who was diagnosed with 0:05:05.156 --> 0:05:08.716 aggressive bone cancer, a woman who found out that her 0:05:08.756 --> 0:05:12.076 late husband had had an affair. A friend of mine 0:05:12.156 --> 0:05:16.276 who lost her little sister in a car accident. I 0:05:16.356 --> 0:05:19.316 didn't know what their stories might reveal, but I hoped 0:05:19.356 --> 0:05:22.996 that my academic expertise might lend me a unique perspective 0:05:24.036 --> 0:05:26.636 in my work as a cognitive scientist. I've spent the 0:05:26.636 --> 0:05:32.516 past two decades exploring the human mind through disciplines like psychology, neuroscience, 0:05:32.556 --> 0:05:37.436 and philosophy. I've studied how we develop our beliefs, make decisions, 0:05:37.476 --> 0:05:41.876 and respond to uncertainty, risk and failure, and so in 0:05:41.916 --> 0:05:46.996 these interviews, I focused on understanding people's interior lives. What 0:05:47.156 --> 0:05:50.116 was shifting within them as they went through their changes. 0:05:51.116 --> 0:05:54.356 What were they experiencing on a psychological level that might 0:05:54.396 --> 0:05:57.876 not be visible to us from the outside. I was 0:05:57.956 --> 0:06:00.956 moved by my guest reflections and often thought back to 0:06:00.996 --> 0:06:04.116 what they'd shared with me. After spending more than one 0:06:04.156 --> 0:06:08.996 hundred hours interviewing people, I noticed patterns emerging across their stories. 0:06:09.756 --> 0:06:13.196 People whose situations looked nothing alike on the surface were 0:06:13.276 --> 0:06:18.956 nevertheless encountering similar challenges. For example, the cancer patient who 0:06:18.956 --> 0:06:21.516 felt like his body had failed him and the woman 0:06:21.516 --> 0:06:24.396 who was cheated on by her husband struggled with a 0:06:24.476 --> 0:06:28.716 similar feeling of betrayal. And it wasn't merely the challenges 0:06:28.756 --> 0:06:31.676 that people had in common. They were also using a 0:06:31.716 --> 0:06:35.476 shared set of strategies to overcome them. Those of us 0:06:35.516 --> 0:06:39.076 going through changes of all kinds are far more connected 0:06:39.116 --> 0:06:41.956 than we may have thought. We can learn from one 0:06:41.956 --> 0:06:44.876 another's stories, even when they don't look like our own. 0:06:45.996 --> 0:06:49.676 I was heartened by this realization and also energized by it. 0:06:50.316 --> 0:06:54.116 There was so much to potentially discover about the universality 0:06:54.156 --> 0:06:58.036 of the change experience. It was clear that I'd only 0:06:58.156 --> 0:07:02.276 just scratched the surface. I wanted to combine long form 0:07:02.316 --> 0:07:05.476 interviewing with our best understanding of how the mind works 0:07:05.836 --> 0:07:08.236 to build a deeper well of wisdom to draw from 0:07:08.316 --> 0:07:11.876 during life's time moments, and that's what led me to 0:07:11.956 --> 0:07:17.236 this book. I've written this for anyone who is currently 0:07:17.276 --> 0:07:19.956 in the choppy waters of a change, is trying to 0:07:19.996 --> 0:07:23.236 make sense of a past change, or is anxious about 0:07:23.236 --> 0:07:26.996 a future change. This book is part narrative and part 0:07:27.076 --> 0:07:32.196 practical guide, rooted in the latest scientific research. I started 0:07:32.196 --> 0:07:35.436 this project by seeking out people with remarkable stories of 0:07:35.556 --> 0:07:39.676 change whom I'd never interviewed before. I then spoke with 0:07:39.756 --> 0:07:42.876 each of them repeatedly over a period of several years. 0:07:43.636 --> 0:07:47.876 Their motivations, reactions, and reflections frequently ran counter to what 0:07:47.876 --> 0:07:50.516 I would have gleaned from the basic facts of their stories. 0:07:51.516 --> 0:07:53.916 I am grateful for their willingness to open up in 0:07:53.916 --> 0:07:57.956 such an unfiltered way. They offer an intimate view into 0:07:57.956 --> 0:08:02.316 the experience of upheaval. When we imagine what it will 0:08:02.316 --> 0:08:05.596 be like to navigate an unexpected change in its aftermath, 0:08:06.156 --> 0:08:08.556 we tend to assume that will be the same person 0:08:08.676 --> 0:08:12.556 from the beginning to end. Research shows that we greatly 0:08:12.676 --> 0:08:16.116 underestimate how much will change in the future, even though 0:08:16.116 --> 0:08:19.676 we fully acknowledge that we've changed considerably in the past. 0:08:20.556 --> 0:08:23.556 This bias is known as the end of history illusion, 0:08:24.196 --> 0:08:27.196 a term coined by the psychologist Dan Gilbert and his 0:08:27.356 --> 0:08:31.476 co authors. People, it seems, regard the present as a 0:08:31.516 --> 0:08:34.916 watershed moment at which they have finally become the person 0:08:34.996 --> 0:08:37.916 they will be for the rest of their lives, they write, 0:08:39.156 --> 0:08:42.756 But we are constantly evolving, and a major disruption in 0:08:42.796 --> 0:08:46.836 our lives can accelerate this process. When a big change 0:08:46.916 --> 0:08:51.356 happens to us, it can lead to profound change within us. 0:08:52.236 --> 0:08:55.356 The unique stresses and demands of being thrust into a 0:08:55.396 --> 0:09:01.396 new reality can uncover unexpected and sometimes astonishing insights about 0:09:01.396 --> 0:09:05.756 ourselves in the world around us. These insights, coupled with 0:09:05.796 --> 0:09:09.356 the experience of the change itself, can transform us in 0:09:09.436 --> 0:09:15.916 extraordinary ways. This is an empowering realization when we're daunted 0:09:15.956 --> 0:09:18.876 at the outset of a change, there is some comfort 0:09:18.916 --> 0:09:21.516 in knowing that the person who will undergo the full 0:09:21.596 --> 0:09:24.836 experience will be different from the person we are in 0:09:24.916 --> 0:09:28.756 this very moment. We will become new people on the 0:09:28.796 --> 0:09:31.996 other side of change in ways we are capable of shaping, 0:09:32.836 --> 0:09:36.316 and so the relevant question isn't how will I navigate 0:09:36.356 --> 0:09:42.356 this change, but rather how will I, with potentially new capabilities, values, 0:09:42.396 --> 0:09:47.236 and perspectives, navigate this change. The first half of this 0:09:47.276 --> 0:09:50.476 book tells the stories of people who, as they confront 0:09:50.516 --> 0:09:55.156 new circumstances, must grapple with all that they've lost in 0:09:55.196 --> 0:09:59.316 their own way. They each experience an internal transformation that 0:09:59.396 --> 0:10:04.076 allows them to imagine freeing possibilities for themselves. The second 0:10:04.156 --> 0:10:06.676 half of the book shows how that sense of possibility 0:10:06.956 --> 0:10:10.356 can ripple outward and inl luence how we relate to 0:10:10.436 --> 0:10:14.916 others and the world. Together, these stories offer a portrait 0:10:15.316 --> 0:10:19.356 of our varied, complicated reactions to change and how we 0:10:19.396 --> 0:10:22.756 can learn to open ourselves up to it. I've been 0:10:22.796 --> 0:10:25.596 inspired to consider the changes in my own life through 0:10:25.636 --> 0:10:29.276 a new lens, a personal evolution that I share throughout 0:10:29.316 --> 0:10:33.716 the book. A negative change can feel like an apocalypse, 0:10:34.236 --> 0:10:37.036 as if the world we knew has now been destroyed. 0:10:37.716 --> 0:10:42.716 But apocalypse comes from the Greek word apocalypsis, which actually 0:10:42.756 --> 0:10:48.756 means revelation. This etymology is instructive. Change can upend us, 0:10:49.196 --> 0:10:52.836 but it can also reveal things to us. What if 0:10:52.836 --> 0:10:55.436 we saw the hardest moments in our lives as a 0:10:55.516 --> 0:10:59.716 chance to reimagine ourselves rather than as something to just endure. 0:11:00.636 --> 0:11:04.716 What potential could change unlock within us? In going on 0:11:04.756 --> 0:11:07.956 this journey with others, I've become far more curious about 0:11:07.956 --> 0:11:10.396 who I can be on the other side of change. 0:11:10.996 --> 0:11:13.396 I hope that after reading this book, you'll come to 0:11:13.436 --> 0:11:23.716 feel the same way. Chapter one, locked in On a 0:11:23.756 --> 0:11:27.996 warm October afternoon in twenty eighteen, Olivia Lewis wrapped up 0:11:27.996 --> 0:11:30.996 an assignment and walked from the campus library to her bike. 0:11:31.796 --> 0:11:35.036 A month earlier, she'd started her senior year at Virginia 0:11:35.116 --> 0:11:40.236 Commonwealth University with a clear resolution to stop making such 0:11:40.276 --> 0:11:44.916 a big deal about her health issues. For nearly a decade, 0:11:44.996 --> 0:11:48.876 she'd been periodically plagued by a strange constellation of symptoms, 0:11:49.396 --> 0:11:55.276 including vision problems, facial numbness, dizziness, and crushing migraines. She 0:11:55.356 --> 0:11:58.236 was a regular at the doctor's office, but more often 0:11:58.276 --> 0:12:01.036 than not, her symptoms would resolve while she waited for 0:12:01.076 --> 0:12:03.956 her appointment to begin, and the doctor would tell her 0:12:04.036 --> 0:12:07.916 that there was nothing actually wrong with her. Her friends, too, 0:12:08.036 --> 0:12:11.356 had grown impatient with her her over the years. Sometimes 0:12:11.356 --> 0:12:13.876 she noticed them sigh or roll their eyes when she 0:12:13.916 --> 0:12:17.476 told them of yet another headache. She hated the idea 0:12:17.556 --> 0:12:20.476 that her anxieties about her health might be taking a 0:12:20.516 --> 0:12:24.236 toll on her relationships. She told herself she would just 0:12:24.396 --> 0:12:27.796 have to toughen up. But as she bent down to 0:12:27.876 --> 0:12:30.196 unlock her bike from the rack, she felt a sharp 0:12:30.236 --> 0:12:33.476 twinge in her neck. When she stood up, little gray 0:12:33.596 --> 0:12:36.796 and black specks appeared in her field of vision. A 0:12:36.876 --> 0:12:39.796 dull headache set in. She shook her head and got 0:12:39.796 --> 0:12:42.196 on her bike to go grab some lunch. It was 0:12:42.276 --> 0:12:46.836 probably nothing. That evening, though, at a friend's house, Olivia 0:12:46.956 --> 0:12:50.236 again felt strange. She just plopped down on the couch 0:12:50.316 --> 0:12:54.276 to watch American Horror Story. When as the show's moody 0:12:54.316 --> 0:12:58.036 theme song filled the room, her face went numb. She 0:12:58.076 --> 0:13:01.516 began to feel faint and nauseated. She excused herself and 0:13:01.556 --> 0:13:04.596 slowly made her way to the bathroom. When she looked 0:13:04.596 --> 0:13:07.516 in the mirror. She saw black splotches where her reflection 0:13:07.676 --> 0:13:11.196 should have been. She blinked hard, then splashed water on 0:13:11.276 --> 0:13:14.636 her face. She looked at the mirror again. The black 0:13:14.676 --> 0:13:18.236 splotches were still there. She cast her eyes around the room, 0:13:18.516 --> 0:13:21.956 but the splotches followed her gaze. Maybe she needed to 0:13:21.996 --> 0:13:25.236 take a few breaths and calm down. She knelt on 0:13:25.276 --> 0:13:28.596 the floor, leaned her forehead against the bathtub, and closed 0:13:28.596 --> 0:13:32.756 her eyes. A few minutes later, she cautiously opened her eyes. 0:13:33.316 --> 0:13:38.036 She could now see her legs clearly. The splotches were gone. Relieved, 0:13:38.076 --> 0:13:40.556 she picked herself up and fixed her hair in the mirror. 0:13:41.356 --> 0:13:43.636 As she walked back to the living room to rejoin 0:13:43.676 --> 0:13:46.316 her friends, she was grateful that she wouldn't have to 0:13:46.356 --> 0:13:49.436 make a scene in front of them. Olivia had only 0:13:49.476 --> 0:13:53.876 recently started to feel like her peers accepted her. Growing up, 0:13:54.036 --> 0:13:56.956 she had attended a private school where she was surrounded 0:13:56.956 --> 0:14:01.436 by kids from wealthy families. Olivia's family was middle class. 0:14:02.116 --> 0:14:04.876 Her parents had taken out loans and cobbled together the 0:14:04.916 --> 0:14:08.516 money to afford the tuition, and her background made her 0:14:08.556 --> 0:14:12.276 stand out. Her classmates made fun of her clothes and 0:14:12.396 --> 0:14:16.196 the things she liked, they disparaged her modest home in 0:14:16.196 --> 0:14:19.876 her family's mini van with its dense and missing hubcats. 0:14:20.756 --> 0:14:24.676 In the fifth grade, Olivia was voted ugliest girl on 0:14:24.756 --> 0:14:28.236 a list that circulated in her school. But in the 0:14:28.276 --> 0:14:30.876 past few years it seemed as if things were beginning 0:14:30.916 --> 0:14:33.476 to go her way. She had built a tight knit 0:14:33.556 --> 0:14:36.676 circle of friends in college. Just a week ago, she'd 0:14:36.676 --> 0:14:39.836 invited them over for a dinner party, where they feasted 0:14:39.876 --> 0:14:43.036 on a big pot of spaghetti while sharing stories and 0:14:43.116 --> 0:14:46.236 laughing late into the night. She and her boyfriend from 0:14:46.316 --> 0:14:50.476 high school, Sean, had maintained a long distance relationship, and 0:14:50.516 --> 0:14:53.076 she was looking forward to visiting him in a few weeks. 0:14:53.756 --> 0:14:56.236 She was also on track to graduate with a degree 0:14:56.276 --> 0:15:00.276 in communications and planned to get a master's degree in copywriting. 0:15:00.876 --> 0:15:05.196 After so many years of feeling inadequate, Olivia could finally 0:15:05.276 --> 0:15:10.516 see an exciting future taking shape before her. Later that evening, 0:15:10.596 --> 0:15:12.916 as she and her roommate drove back to their apartment, 0:15:13.556 --> 0:15:16.356 Olivia rolled down the window, took in some fresh air, 0:15:16.836 --> 0:15:21.036 and let the serenity of the night sky soothe her nerves. 0:15:21.156 --> 0:15:24.796 She reassured herself that she was fine. Now her focus 0:15:24.876 --> 0:15:27.716 was on getting to bed. She had an important class 0:15:27.756 --> 0:15:29.836 in the morning, and she had a habit of sleeping 0:15:29.876 --> 0:15:32.876 through her alarms. She took a quick shower and then 0:15:32.956 --> 0:15:37.516 performed her nightly ritual, setting six consecutive alarms on her phone, 0:15:37.596 --> 0:15:42.076 starting at eight a m spaced ten minutes apart. It 0:15:42.116 --> 0:15:45.036 was just after four in the morning when an excruciating 0:15:45.076 --> 0:15:49.196 sensation coursed through Olivia's body. It ran from her spine 0:15:49.236 --> 0:15:52.396 into her head, jolting her awake and causing her to 0:15:52.476 --> 0:15:56.156 lurge upright as her body seized up, she fell out 0:15:56.196 --> 0:15:59.036 of her bed and her skull crashed directly onto the 0:15:59.076 --> 0:16:04.076 hardwood floor. Her head throbbed. She needed help. She tried 0:16:04.116 --> 0:16:06.276 to reach for her phone, which was dangling off the 0:16:06.316 --> 0:16:08.836 side of her bed by its power cord, a mere 0:16:08.876 --> 0:16:12.796 inn above her face, but her arm wouldn't move. She 0:16:12.876 --> 0:16:17.556 tried to yell for her roommate, her mouth wouldn't move either. Suddenly, 0:16:17.596 --> 0:16:21.596 a cascade of fluids erupted from her body. A warm, 0:16:21.676 --> 0:16:24.756 thick substance oozed out of her ears, A puddle of 0:16:24.916 --> 0:16:28.516 urine formed beneath her. A mixture of vomit and blood 0:16:28.556 --> 0:16:31.556 bubbled up in her mouth. If she hadn't landed on 0:16:31.596 --> 0:16:33.796 her side. She thought she might have choked on it. 0:16:34.596 --> 0:16:38.356 Though she was not particularly religious, she found herself talking 0:16:38.396 --> 0:16:41.436 to God, Is this it? Am I just going to 0:16:41.516 --> 0:16:45.036 die like this? She lay frozen in place for about 0:16:45.076 --> 0:16:49.156 two hours, fighting to keep herself awake. Then a strange 0:16:49.156 --> 0:16:52.756 sense of peace descended upon her. She allowed herself to 0:16:52.836 --> 0:16:57.556 drift into the darkness. The next thing Olivia became aware 0:16:57.556 --> 0:17:00.516 of was the footsteps of her roommate, who burst into 0:17:00.556 --> 0:17:05.356 Olivia's room annoyed by the incessant beeping of alarms. Olivia 0:17:05.436 --> 0:17:09.036 heard her roommate scream, oh my God, the alarms cante 0:17:09.316 --> 0:17:13.476 you to go off. Beep, beep beep. Her roommate was 0:17:13.516 --> 0:17:17.236 now calling nine one one. Olivia registered all of this 0:17:17.436 --> 0:17:20.196 as if it were coming from far away. She could 0:17:20.196 --> 0:17:23.756 hear the wails of an ambulance siren. Soon, a medic 0:17:23.796 --> 0:17:27.836 was leaning over her, asking her questions, Olivia, Olivia, can 0:17:27.876 --> 0:17:32.156 you hear me? When Olivia woke up, or sort of 0:17:32.196 --> 0:17:35.556 woke up, her eyes were still closed. She was lying 0:17:35.596 --> 0:17:38.156 flat in a bed and hooked up to a ventilator. 0:17:39.316 --> 0:17:43.156 The metronomic noises of hospital machines filled the air. Two 0:17:43.196 --> 0:17:45.956 people were talking. They sounded like her parents, and they 0:17:45.996 --> 0:17:49.596 sounded distressed. Do they even know I'm alive in here? 0:17:50.156 --> 0:17:53.396 Olivia thought, with sudden panic, are they going to pull 0:17:53.436 --> 0:17:57.316 the plug? But before she could do anything, she again 0:17:57.436 --> 0:18:01.476 drifted out of consciousness. The next time she came to, 0:18:01.796 --> 0:18:05.076 her eyes opened, a nurse in blue scrubs was dabbing 0:18:05.116 --> 0:18:08.156 a wet sponge against Olivia's lips while doctors talked to 0:18:08.196 --> 0:18:11.316 one another by the side of her hospital bed. When 0:18:11.356 --> 0:18:14.196 she woke up again, a kind looking woman she didn't 0:18:14.236 --> 0:18:17.396 know was strumming a guitar at her bedside, singing a 0:18:17.436 --> 0:18:21.796 song by Maroon Five, one of Olivia's favorite bands. When 0:18:21.796 --> 0:18:24.316 the woman finished the song, she asked Olivia if there 0:18:24.356 --> 0:18:27.476 was another one she might like to hear. Olivia heard 0:18:27.516 --> 0:18:30.436 the question, but the words passed over her like air. 0:18:31.636 --> 0:18:34.796 And then later, her aunt was sitting next to her, 0:18:34.996 --> 0:18:37.916 looking at her intently and holding up a board with 0:18:38.036 --> 0:18:41.396 each letter of the alphabet printed on it. What were 0:18:41.396 --> 0:18:45.796 the letters for Olivia? Her aunt said, Olivia, if you 0:18:45.796 --> 0:18:55.676 can understand what I'm saying, please blink. Olivia blinked. Olivia 0:18:55.756 --> 0:18:59.556 had suffered a massive brainstem stroke, which damaged the regions 0:18:59.556 --> 0:19:02.396 of her brain that controlled voluntary muscle movement for the 0:19:02.596 --> 0:19:06.396 entire body except for the eyes. The stroke had left 0:19:06.436 --> 0:19:10.476 her with a condition called locked in syndrome, unable to 0:19:10.556 --> 0:19:15.956 voluntarily move, speak, make facial expressions, chew, or swallow. People 0:19:15.996 --> 0:19:18.956 with locked in syndrome can mistakenly be thought to lack 0:19:18.996 --> 0:19:24.476 consciousness altogether. They do, however, retain their full cognitive abilities 0:19:24.476 --> 0:19:28.596 and personality traits. They are able to think, reason, and 0:19:28.716 --> 0:19:34.396 feel the same emotions as before. Their cardiovascular, digestive, urinary, 0:19:34.596 --> 0:19:39.156 and other autonomic systems also generally continue to function, though 0:19:39.196 --> 0:19:43.196 breathing support is often required. Some people with locked in 0:19:43.276 --> 0:19:47.316 syndrome can make noises or vocalizations like crying or laughing. 0:19:48.876 --> 0:19:52.276 The condition gained greater recognition after the publication of the 0:19:52.316 --> 0:19:57.036 memoir The Diving Bell and the Butterfly by Jean Dominique Boubi, 0:19:57.836 --> 0:20:00.996 a former editor in chief of the French magazine L 0:20:02.036 --> 0:20:06.316 bob suffered a brainstem stroke in December nineteen ninety five. 0:20:07.316 --> 0:20:10.556 After being in a coma for twenty ti he awoke 0:20:10.596 --> 0:20:13.276 in a hospital to find that he was unable to 0:20:13.356 --> 0:20:17.836 initiate any muscle movement except for the muscles controlling his 0:20:17.956 --> 0:20:22.836 left eyelid. Which allowed him to blink to help him communicate. 0:20:23.276 --> 0:20:26.436 His speech therapist would recite the letters of the alphabet, 0:20:26.956 --> 0:20:30.076 and Bob would blink when she arrived at the correct letter. 0:20:31.276 --> 0:20:34.836 Using this method, he could slowly spell out words letter 0:20:34.996 --> 0:20:40.436 by letter. In other cases, like Olivia's, caregivers will slide 0:20:40.476 --> 0:20:42.876 a finger along a board that lists the letters of 0:20:42.916 --> 0:20:46.316 the alphabet, and patients blink when they arrive at the 0:20:46.316 --> 0:20:51.036 correct letter. Bob completed his memoir this way, spending at 0:20:51.116 --> 0:20:53.596 least three hours a day on it for two months. 0:20:54.516 --> 0:20:56.716 He wrote about what it was like to grieve the 0:20:56.796 --> 0:21:01.356 loss of basic pleasures, such as hugging his son. The 0:21:01.436 --> 0:21:05.876 memoir's title offers a metaphor. His body is the diving bell, 0:21:06.316 --> 0:21:09.716 a rigid, heavy chamber that divers used to go deep 0:21:09.756 --> 0:21:13.956 into the ocean, and his mind is the butterfly, fluttering 0:21:13.996 --> 0:21:19.676 about but trapped within. Locked in syndrome is exceptionally rare. 0:21:20.396 --> 0:21:23.636 It's estimated that fewer than one thousand people in the 0:21:23.756 --> 0:21:27.636 United States currently have it. There is no cure, and 0:21:27.716 --> 0:21:31.476 although some people are able to recover limited voluntary motor 0:21:31.516 --> 0:21:37.396 function after extensive rehabilitation, the long term prognosis is very poor. 0:21:38.316 --> 0:21:43.316 The vast majority of patients never regains significant motor control. 0:21:43.436 --> 0:21:47.636 They continue to live with severe constraints, requiring round the 0:21:47.636 --> 0:21:50.716 clock care to meet their daily needs and to prevent 0:21:50.836 --> 0:21:56.116 complications that can result in death. Bobi himself died fifteen 0:21:56.156 --> 0:22:01.116 months after his diagnosis from pneumonia. Olivia did not know 0:22:01.236 --> 0:22:04.556 any of this as she drifted in and out of consciousness, 0:22:05.036 --> 0:22:07.996 her mind one big jumble from the steady stream of 0:22:08.076 --> 0:22:11.756 narcotics and others their medications that were being pumped into 0:22:11.756 --> 0:22:15.396 her body through an IV. She didn't know that she 0:22:15.476 --> 0:22:19.076 was being kept alive entirely by machines, or that she 0:22:19.116 --> 0:22:23.116 had had brain surgery days earlier. Nor did she know 0:22:23.316 --> 0:22:27.196 that the hospital chaplain had informed her mother that Olivia 0:22:27.236 --> 0:22:31.916 was per the hospital's judgment past the point of reasonable return. 0:22:33.156 --> 0:22:36.876 Physicians were recommending that Olivia move into a nursing facility. 0:22:37.756 --> 0:22:42.436 Her grandmother, a school psychologist, was mentally preparing the family 0:22:42.596 --> 0:22:46.916 for Olivia's death. All Olivia knew was that she had 0:22:46.956 --> 0:22:50.556 to focus on blinking so that she could communicate her needs. 0:22:51.996 --> 0:22:54.116 By the end of her first week in the hospital, 0:22:54.636 --> 0:22:58.116 Olivia gained more lucidity as doctors weaned her off some 0:22:58.196 --> 0:23:02.476 of the medications. She became consumed with figuring out what 0:23:02.596 --> 0:23:07.796 had happened to her. She painstakingly blinked out question after question. 0:23:08.836 --> 0:23:10.956 Her my mom explained to her that she had had 0:23:10.996 --> 0:23:14.396 a stroke, which had left her in a locked in state, 0:23:15.676 --> 0:23:19.316 but Olivia was still unable to internalize that her body 0:23:19.396 --> 0:23:24.116 had been profoundly altered. It was only when her boyfriend 0:23:24.156 --> 0:23:28.676 Sean brought his family to visit the following week, his parents, aunt, 0:23:28.756 --> 0:23:32.796 and uncle filing into her cramped hospital room, that the 0:23:32.836 --> 0:23:37.116 gravity of her condition began to dawn on her. As 0:23:37.156 --> 0:23:39.476 Sean and his family stood at the foot of her bed, 0:23:39.836 --> 0:23:43.916 trying to puncture the silence by sharing lighthearted memories from 0:23:43.996 --> 0:23:47.036 a summer beach trip they had taken with Olivia, she 0:23:47.236 --> 0:23:51.916 sensed their unease. Oh God, they must feel so awkward 0:23:51.996 --> 0:23:56.036 right now, Olivia thought, do something to make them feel 0:23:56.076 --> 0:24:01.356 more comfortable. Fix this. Olivia had always been intimidated by 0:24:01.356 --> 0:24:05.756 Shawn's family. They ran indifferent, more elite social circles than hers, 0:24:06.196 --> 0:24:09.516 frequenting the local country club and living in a wealthy 0:24:09.556 --> 0:24:13.476 part of town. Every time Olivia went over to Shawn's 0:24:13.516 --> 0:24:16.476 house for dinner, his dad made her feel as if 0:24:16.476 --> 0:24:18.996 she were being interviewed for a job, she had no 0:24:19.276 --> 0:24:23.036 chance of getting convinced that she didn't have his family's 0:24:23.076 --> 0:24:27.116 approval because she wasn't accomplished enough, or pretty enough, or 0:24:27.196 --> 0:24:31.436 sophisticated enough. Olivia had joined them for their summer vacation 0:24:31.556 --> 0:24:35.436 to the beach, determined to win them over. In the 0:24:35.436 --> 0:24:38.356 weeks leading up to the trip, she brainstormed ways to 0:24:38.396 --> 0:24:41.876 show them that she was worthy of their son. Sure, 0:24:41.996 --> 0:24:45.076 she was currently working as a hostess at a restaurant, 0:24:45.356 --> 0:24:48.436 but it was her competitive fall internship at a marketing 0:24:48.476 --> 0:24:52.476 agency that she really cared about. Oh, and did she 0:24:52.636 --> 0:24:57.116 mention all the books she was reading. Despite her best attempts, 0:24:57.116 --> 0:25:00.476 though she had left the trip knowing it hadn't been enough, 0:25:01.236 --> 0:25:05.156 she would simply have to try harder next time. But 0:25:05.236 --> 0:25:07.716 as Olivia lay in her hospital bed, she could, of 0:25:07.756 --> 0:25:11.716 course do nothing. With a trichyotomy tube now hanging from 0:25:11.716 --> 0:25:15.516 her neck and no ability to make facial expressions, she 0:25:15.556 --> 0:25:19.116 could not project poise and grace. She could not thank 0:25:19.196 --> 0:25:23.076 Shan's family for coming or encourage their halting efforts to 0:25:23.076 --> 0:25:25.956 connect with her. She could not make jokes about the 0:25:25.996 --> 0:25:29.476 hospital food or not a long and offer reassurance that 0:25:29.556 --> 0:25:32.956 she knew they meant well, that their nervous laughter and 0:25:33.076 --> 0:25:39.076 tense body language were totally fine, totally understandable. As Sean's 0:25:39.076 --> 0:25:42.436 family got ready to leave Olivia's room, his uncle walked 0:25:42.476 --> 0:25:46.316 over to her bedside. He hesitated for a moment, uncertain 0:25:46.356 --> 0:25:50.036 about how exactly he ought to say goodbye. He placed 0:25:50.036 --> 0:25:53.316 his hand gently on hers Hang in there, Olivia, he 0:25:53.356 --> 0:25:58.356 whispered kindly. Suddenly the room filled with loud, piercing screams, 0:25:58.836 --> 0:26:03.236 like a hyena's, Olivia thought. Then it hit her she 0:26:03.516 --> 0:26:07.196 was the one making the sounds. She was crying uncontrollably, 0:26:07.436 --> 0:26:10.796 but it was coming out as screeches. Alarmed that they 0:26:10.836 --> 0:26:14.476 might have said something wrong to cause Olivia's outburst, Shawn's 0:26:14.516 --> 0:26:18.516 family quickly ushered themselves out. This was more than Olivia 0:26:18.556 --> 0:26:23.156