Navigating the medical system can be confusing and frustrating. We get advice from experts on how to become a smarter health care advocate for yourself and your loved ones.
When a successful young woman suffers a traumatic brain injury, impairing her ability to perceive information coming from the left, she begins to pay more attention to the things in her life she has “left neglected.”
- Lisa Genova holds a PhD in neuroscience from Harvard University and is the author of New York Times bestselling novel, "Still Alice."
MS. DIANE REHMThanks for joining us, I'm Diane Rehm. The main character of writer Lisa Genova's newest book is a young mother of three who also happens to have an incredibly demanding job and a fierce drive to succeed. But, as is often the case, life as she planned it was not meant to be. Lisa Genova is the author of the bestselling novel, "Still Alice." She joins me in the studio to talk about her newest book titled, "Left Neglected."
MS. DIANE REHMAnd I do invite you to join us, 800-433-8850, send us your e-mail to firstname.lastname@example.org, feel free to join us on Facebook or Twitter. Good morning to you, Lisa. Welcome.
DR. LISA GENOVAGood morning, Diane. Thank you.
REHMI know you also have a PhD in neuroscience. How has what you have studied affected what you write?
GENOVAWell, I think the background in neuroscience fuels the passion for wanting to know more about these conditions that people live with, so I wanted to know more than just what's written in clinical textbooks, which tend to be very dry and limited to the molecular causes or the physiology and the chemistry. I want to understand about the person who lives with it, so that sort of fuels the interest. And then, having the credentials, having this PhD in neuroscience really opens the doors for allowing me to talk to the experts who know about this, both the medical professionals who treat people with things like Alzheimer's or left side neglect. And then the people who have it and their families feel that they can let me in and tell me about their personal lives.
GENOVANow, of course, in your first book, "Still Alice," you did write about Alzheimer's from the perspective of the patient and what she experienced as she was moving through that realm of knowing, but not knowing. Now, in "Left Neglected," you write about something that perhaps most of us have never even heard of. Describe what left neglected means.
GENOVASo left neglect is a neurological condition. It normally occurs following an injury -- either following a stroke or hemorrhage or a traumatic brain injury on the right side of the brain in which it results in a condition which the patient no longer recognizes, no longer is aware of, no longer pays attention to anything on the left side of anything, often including the left side of themselves.
REHMSo if you think about present day circumstances, Congresswoman Gabby Giffords struck on the right side of her brain by the bullet or was it the left side?
GENOVAI think she -- I believe hers was the left. So most of -- most of the functions in our brain are what we call bilaterally symmetrical. What's on the right is represented on the left. But there are things like language, which is specialized on the left side. So for Gabrielle Giffords, we are concerned about her language centers. It appears that she can comprehend language because she has already responded to some commands and recognizes things, but we don't yet know how intact her speech production will be, so we can wait on that.
GENOVAAttention isn't bilaterally symmetrical, so the ability to pay attention to something in space -- the right side of your brain can pay attention to the whole world, left and right. But the left side, the center that's responsible for paying attention, to being aware of things, is -- only pays attention to what's on the right. So when -- if you have damage to the right hemisphere attention center, you lose the ability to pay attention to the whole world and the left side is only paying attention to what's on the right. So the left side is gone to you. And what this means if you have left neglect is that you'll only eat food on the right side of your plate and think you've finished your meal.
GENOVAIf you're a woman, you'll only apply make up to the right side of your face and you think you're ready to go out and you look great. If you're a man, you'd only shave the right side of your face and you might have a full beard on the left and not be aware of it. Your eyes see, so your eyes aren't damaged, your vision works, the part of your brain, which is in the back of your head, responsible for vision sees all the information. And the part of your brain that's responsible for motor planning and motor output, your Corticospinal tract. You can move your left arm and leg, you're not paralyzed, but the part of your brain that's responsible for being consciously aware of all of that information on the left, both coming in and going out, is broken.
REHMThere's a part early in the book, starting on page 17, where somehow, we get a signal of what's to come. Read for us.
GENOVAOkay. "Charlie gallops into the kitchen out of breath. 'Where are my Pokemon cards?' 'Charlie, you're still in your pajamas. Forget about Pokemon, go get dressed,' I say. 'But I need my Pokemon cards.' 'Pants, shirt, shoes and shut off your light,' I say. Charlie throws his head back in frustration, but surrenders and barrels back upstairs to his room. 'Any house stuff,' Bob asks? 'Will you call the garage door guy this time?' 'Yep, he's on my list.' Our automatic door opener is one of the newer models and it has a seeing eye sensor that keeps it from closing if it observes something under the door, like a small child. It's a great safety feature in theory, but it only seems to drive us crazy.
GENOVAOne of the kids, and we suspect Charlie, keeps knocking into the eye on the right side so it's not level with and can't see the left side. And when it gets cross-eyed, it won't work at all. When we were kids, my brother, Nate, and I used to play 'Indiana Jones' with our automatic garage door. One of us would hit the button on the remote and then we would see who had the guts to wait the longest before running and rolling under the closing door. No safety features in those days. That garage door operated completely blind. It would've taken all the fun out of the game if the risk of getting crushed to death, or at least the painfully squished, had been removed. Nate was great at it, diving and rolling at the last possible second. God, I still miss him."
REHMThere is in that page for me the element of things to come. Did you deliberately build in that door with the eye that can become confused?
REHMSure. Absolutely. That's a little foreshadowing there, yeah.
REHMTell me about her life. She is so busy.
GENOVAShe's so busy and it should feel a little extreme, but it should also feel familiar. I think a lot of us today are really driven to do it all, have it all, be it all. Technology allows us to do so many things at once these days with e-mail and texting and cell phones and how many channels on the TV. And there's so much that we can be plugged into and connected to and, you know, even my husband and I were talking this morning about how people will send you e-mails on a Friday evening or a Saturday related to business and are upset with you Monday morning if you haven't gotten back to them.
GENOVASo we really live in this sort of 24/7 lifestyle these days where we're just jamming so much in and we're exhausted. But this character, she's in her 30s, she's a working mother of three, she is just trying to be it all and do it all.
REHMAnd she has an extraordinary demanding job. Her husband, Bob, whom you mentioned in that reading you just did, is a little concerned about his own work because there had been layoffs.
GENOVARight, so the pressure's on. Families are very real today about, you know, the economy's affecting a lot of families who have to work really hard for uncertain futures and maybe less pay and there's a lot of stress that goes on day to day. And while, again, it might seem that her life is sort of extreme in some ways, she is a bit off path for her, she isn't paying attention to her own life because she's barreling ahead a thousand miles an hour all day long because she feel she has to. She's really missing -- her attention is spread so thin, she's really missing out on choosing the life that she wants. She's so busy, she's not really consciously aware of what's going on.
REHMInteresting that these little children are named after characters in the Peanuts strip.
GENOVAYeah, (laugh) her children are Charlie, Lucy and Linus. They named the first two because they liked the names and weren't sort of consciously thinking of the Peanuts, but then realized the trend they had started with the first two and named the third Linus.
REHMAnd Linus is how old?
GENOVAHe is nine months old at the beginning of the story.
REHMWhoa. So she really has her hands full. How much of a help is Bob?
GENOVABob is a really modern dad. He -- you know, it's funny, I had two children when I began writing this and I've -- since the book has been published, I now have three children, so I've caught up to Sarah, so I understand that family life dynamic. My husband's very much involved with the child raising with me, so he's like her. They both have jobs they care about and are striving to succeed professionally, but they also want to be as involved as they can in their children's lives and it's a very difficult balance to strike.
REHMAnd they've also bitten off a lot financially.
GENOVARight. So they live in an affluent suburb of Boston where everyone is sort of trying to keep up with the Joneses. You know, how nice is your home, where do you vacation, what do you drive? And this belief that the deserve the best of everything and want to give their children the best of everything, but have sort of gotten caught up in that materialistic side of the best of things. Rather sort of, you know, quantity rather than quality perhaps.
REHMAnd they own a second home in Vermont.
GENOVARight. And the reason for that originally was because they both loved to ski and their love of skiing originally gave them a lot of sort of free space to become grounded and kick that to do list, that constant looping to do list, out of their heads and just be outside and exercise and be together without the pressures of work and the demands of day to day life. But because they're so busy and the demands of their day to day life has sort of -- their lives are running them instead of them running their lives, they haven't even been to their house in Vermont in a very long time.
GENOVALisa Genova, her new book is titled, "Left Neglected." She, in addition to being a novelist, has a PhD in neuroscience, so she writes thereof she knows. And we'll take a short break here. We'll be right back.
REHMAuthor Lisa Genova is with me. The title of her latest book, "Left Neglected," a condition that affects the ability after an accident, after a stroke, after some serious blow to the head leaves an individual unable to see on the left side. Lisa, the reason I want you to read this portion of the book where Sarah has her accident is because it's something too many of us do and never think about the possible consequences. Read for us where Sarah has her accident.
GENOVA"Rain is coming down in sheets, splashing onto the fogged windshield almost faster than the wipers can keep pace. The headlights click on, its censors tricked by the dark morning into thinking that it's nighttime. It feels like nighttime to my senses, too. It's the kind of stormy morning that would be perfect for crawling back into bed, but I'm not about to let the gloomy weather dampen my good mood. I have no kids to shuttle, buckets of time and traffic is moving despite the weather. I'm going to get to work early, organized and ready to tackle the day, instead of late, frazzled, grape juice stained and unable to kick some unnamed Wiggles song out of my head.
GENOVAAnd I'm going to get some work done on the way. I fish in my bag for my phone. I want to make a call to Harvard Business School. November is our biggest recruiting month and we're competing with all the other top consulting firms, like McKenzie and Boston Consulting Group to pluck the best and the brightest from this year's crop.
GENOVAWe never learn as many graduates as McKenzie does, but we usually beat out BCG. I find my phone and begin searching for the Harvard number in my contact list. I can't find it under H. That's odd. Maybe it's under B for business school. I glance up at the road and my heart seizes. Red brake lights glow everywhere blurry through the wet and foggy windshield, unmoving like a watercolor painting. Everything on the highway is still, everything but me. I'm going 70 miles per hour.
GENOVAI slam on the brakes. They catch the road and then they don't. I'm hydroplaning. I pump the brakes, I'm hydroplaning. I'm getting closer and closer to the red lights in the painting. Oh, my god. I turn the wheel hard to the left, too hard. I'm now outside the last lane of the eastbound highway spinning between east and west. I'm sure the car's still moving very fast, but I'm experiencing the spinning like it's happening in slow motion. And someone turned off the sound, the rain, the wipers, my heartbeat. Everything is slow and soundless like I'm underwater. I hit the brakes and turn the wheel the other way hoping to either correct the spinning or stop.
GENOVAThe landscape bends into an unmanageable slant and the car begins to tumble end over end. The tumbling is also slow and soundless and my thoughts, while I'm tumbling, are detached and strangely calm. The airbag explodes. I notice that it's white. I see the loose contents of my bag and the penny I found suspended in air. I think of astronauts on the moon. Something is choking my throat. My car is going to be totaled. Something hits my head. I'm going to be late for work. Then suddenly the tumbling stops and the car is still. I want get out of the car, but I can't move. I feel a sudden crushing and unbearable pain on the top of my head. It occurs to me for the first time that I might've wrecked more than my car. I'm sorry, Bob
GENOVAThe dark morning gets darker and goes blank. I don't feel the pain in my head. There is no sight and no feeling. I wonder if I'm dead. 'Please don't let me die.' I decide I'm not dead because I can hear the sound of the rain hitting the roof of the car. I'm alive because I'm listening to the rain and the rain becomes the hand of God strumming his fingers on the roof deciding what to do. I strain to listen, keep listening, listen, but the sound fades and the rain is gone."
REHMLisa Genova reading from her book, "Left Neglected." She, of course, then wakes up finally in a hospital with the fluorescent lights above her. She really doesn't know what's happened to her.
GENOVANo. In fact, so -- people who have left neglect are unaware of their unawareness. So they don't -- it's not like someone took an eraser or there's this big blackness on the left side of everything. They are only aware of what's on the right and that is enough to assume a hole for them. So she's not aware that she can't move her left leg and go walk to the bathroom. So when she gets up to go she falls to the floor.
GENOVAIt's only when the nurses and the doctors notice that she's only eating the food on the right side of her plate, or she can only circle the letter As on the right side of a page when asked to do some tests. She ignores everything on the left. Even her husband who's standing to her left, to the right of the doctor who's facing her, she asks him to stop talking to her and wait for her husband to come in and he says, I'm standing right here. And she can't find him.
REHMDoes the doctor recognize pretty quickly what's going on?
GENOVAYes, he does. So interestingly, I thought this was a rare condition. I had never come across anyone who had it before I was interested in writing the story and so I thought I was going to have a hard time finding people. But if you call any rehabilitation hospital and ask, do you have any patients there with left neglect? They'll say, oh, sure, we've got people here right now. They're very familiar with this.
REHMHere's an e-mail from Carolina in Crystal City. She says, "With some -- would someone with left neglect be able to see her left side if she arranges two mirrors in a way that her left would appear as her right?"
GENOVAYes. And that's a brilliant idea. Occupational and physical therapists often don't sort of use this trick of mirrors, but they will take video of you or show you pictures. In the book, actually, her husband takes a quick picture of her with his phone and shows it to her. Because in a picture, what's on your right then is transposed onto your left, so you can see the right side of you -- you can see the left side of you on the right.
GENOVAWhereas if you're just looking straight in a mirror, your right is still on your right, so that's a way for you to see what's on the left side of you. And in fact, her -- Sarah's right side of her head is shaved from the neurosurgery and so she thinks she's completely bald. And when Bob takes a picture of her the left side of her head is now on the right side of the photograph and she says, oh, my God, I have hair. What's going on? And that's how she discovers that she's got half of a head of hair.
REHMAnd then decides to have it all shaved...
REHM...because she thinks this looks weird.
REHMAnd hopes, of course, that the hair will grow back in. Her mother figures into the book in a very prominent way. Talk about that.
GENOVASo here's this very strange neurological condition that's an extreme inattention, an extreme way of ignoring half of the world. And when I was creating the story around this condition I'm writing about a character who is like, I think, a lot of us where we ignore a lot in our day-to-day lives. And this can be like ignoring the road because you're on your cell phone and shouldn't be, or you're ignoring the exercise equipment in your house that you'd rather not use, but what about also our relationships? A lot of us have relationships, whether it's a mother, daughter or a sister or a friend, where there's something painful there or something awkward or there's been a fight. There's a rift and it's easier to ignore it than address maybe something that's a little difficult to talk about.
GENOVAAnd so Sarah's relationship with her mother has been just that. They've been estranged for 30 years. Sarah's younger brother drowned in a pool when she was little. Her...
REHMAnd that was Nathan, who we mentioned in the earlier read.
GENOVAYes. And even the way that he loses his life is -- you know, it's that split-second as a parent, if you're not watching your child in the pool or at the beach. There's so many incidences as a parent where if you're at a store and you look the other way for a minute, where is my kid?
REHMThe child is gone.
GENOVAYes. So this happens in her childhood and it sort of steals her mother as well 'cause her mom can't get over the guilt and the loss and there's depression there. And so now her mother shows up to help take care of her and to help Sarah in her rehabilitation and her recovery. And they're now forced to pay attention to each other and hopefully heal that rift between them.
REHMSarah tries not to pay too much attention to her mother early on. Let's talk a little about Charlie. He is the little boy who wouldn't get dressed at first and she had to remind him to go put on his pants and socks and shoes and the like. A teacher -- his teacher calls the parents in suggesting that Charlie is not doing well, that he may have something like attention deficit disorder, which Sarah and Bob really don't want to accept.
GENOVARight. So again, sort of drawing on this idea of what is normal attention and what is not. What is -- what do we ignore that's okay and what do we ignore that is treatable or diagnosable? And so here's a little boy who has trouble sitting still and he has trouble paying attention in school and is that something that we diagnose and treat? And how do you manage it? And parents' expectations of having successful children who will go on to achieve and achieve and sort of this idea of accepting your child for what they're -- who they are and both Sarah and her son have to sort of redefine what normal is.
REHMLisa, when you were earning your PhD in neuroscience, was left neglect part of that study?
GENOVANot formally. I first read about someone with neglect in Oliver Sacks' book, "The Man Who Mistook His Wife for a Hat." There was a three-page story of a man in a hospital who kept every night feeling this corpse leg, this disembodied dead leg in bed with him. And he justified it as thinking, well, maybe one of the nurses is playing a sick joke on him and stole a leg from the morgue and put it in bed with him. So he goes to throw the leg out and of course he has left neglect, it's his left leg and he goes out of bed with it and falls out of bed every night. And that's the end of that story and I kept thinking, oh my god. Well, how does this man live? How does he wake up and get dressed? Is he married? Does he have a job? What -- how does he live with experiencing a whole world only aware of half of it?
GENOVAAnd similarly, I just -- over the years in my neuroscience training, just kept coming across very small vignettes of a patient, usually in a doctor's office, who would be asked to draw a clock and would only draw the numbers 12 thru six and that's all they'd tell me. And I'd think, well, how does this person know when it's 20 of 9:00? Just wanting to know more of what it felt like to have this. And then so interestingly -- so I'd never met anyone with this -- when "Still Alice" was originally self published, I met a local Massachusetts author named Julia Fox Garrison, who had also originally self-published her book, but then went on to get a book deal. She introduced me to her literary agent who then became my agent and then "Still Alice" went on to sell to Simon and Schuster.
GENOVAWhen I called Julia Fox Garrison to thank her for so generously changing my life, she asked me if I was going to write another book or was "Still Alice" it? I said, oh, I'm going to write another book. I' writing a story about someone with left neglect. Big pause on the phone and she says, Lisa, I have left neglect.
REHMThat's a shocker.
GENOVAIt's a shocker. And so I -- she was the first person I met and have come to know very well who has this and she was an enormous help in me understanding what it's like to live with this.
REHMLisa Genova, her new book is titled, "Left Neglected," and you're listening to "The Diane Rehm Show." We're going to open the phones to answer your questions, to hear your comments. Do join us, 800-433-8850. Send us your e-mail to email@example.com. Feel free to send us a tweet or join us on Facebook. First to Nancy in Reston, Va. Good morning to you.
NANCYHi, thank you for having me.
NANCYI actually have a couple questions. My brother about 15 years ago had a traumatic brain injury to the -- I believe the right side of his brain and he had a stroke and died last Tuesday.
REHMOh, I am so sorry.
NANCYYeah, so I guess one question is I believe that people with TBIs have a significantly higher incidence of stroke. And the other is, my original question was, it was -- you know, it got me to wondering why it is that the right side of the brain controls the left side and vice versa, when, you know, the neurons would be so much more efficient (laugh) to go, you know...
GENOVAOh, okay. Yeah, it's just how we're designed. That's how our brain is organized to cross over. So what's on the right crosses the midline to the left from everything from our ability to move, our motor neurons, to our ability to feel, so like if you feel something in your right finger, it lands somewhere in the left side of your brain. It's just how everything is organized. So yeah, maybe it would be more efficient if we were -- if things didn't cross the midline, but that's just how it's designed. So sorry to hear about your brother.
REHMOh, my goodness, I should say. What a tragedy. Thank you for calling, Nancy. At the same time, haven't there been instances when one side of the brain doesn't work as it should, the other side of the brain begins the process of taking over?
GENOVARight. So our brains are remarkably adaptable and it's something neuroscientists call plastic. Neuroplasticity means the ability to make new neural connections and to have other parts of the brain take over functions for other places that might be damaged. So actually, even this morning, I saw on "The Today Show" there was a girl who had severe seizures and had the whole left side of her left cortex removed at the age of two.
GENOVAAnd you can survive this and function because the right side can then adapt and take over those functions, so there's a lot of hope after a traumatic brain injury or damage following a stroke that you can have the functions that are lost in one part of the brain get taken over by another part. In fact, this is what a lot of the rehabilitative tools aim to do is to harness the ability of another part of the brain to take over that function to become aware of your unawareness and to go find and pay attention to the left side.
REHMWhat about Alzheimer's and why you chose to write about that?
GENOVAMy grandmother had Alzheimer's. She was 85 when she was formally diagnosed, but I think we were like a lot of families in that we assumed that her forgetting was a normal part of normal aging. And so we really missed the beginning stages of her Alzheimer's all together and just chalked it up to, oh, Nana's getting old. And so by the time she was diagnosed and we formally were there to take care of her, she was pretty far along.
REHMLisa Genova, her newest book is titled, "Left Neglected." More of your calls when we come back. I look forward to hearing from you.
REHMAnd we are back with writer, Lisa Genova. Her new book is titled "Left Neglected." Did you self publish this book initially or did Simon and Schuster take it right on?
GENOVAI had a contract with Simon and Schuster.
REHMGood, good. I'm glad.
REHMThat's a good story, you know, a friend put you in touch and you're on from there. Tell me about telephoning in the car, because that's what Sarah has done. She's clearly looking down as she does it, so we all think, oh, well, I never do that. I put my headphone on, I've got my cell phone there and it's okay if I'm just listening.
GENOVARight. So, this really is sort of the epidemic of the century so far, I think. We all use our phones so much that they sort of become, like, this natural extension of ourselves. We’re so -- it's so pervasive, we think, so many of us think nothing of using the phone while we're in the car. So here's what we know, texting while driving, you're 23 times more likely get in a crash. So looking down at your phone for any reason is taking your attention away from the road. It’s extremely dangerous. We absolutely have to stop that.
GENOVAHere's what else I've found out, though. I always assumed that hands-free was safe to talk on the phone without, you know, holding the phone to your ear would fine. It should be much like talking to a passenger who's next to you in your car, which of course we all do. Well, here's what I've learned and what the studies have shown, that hands-free talking on the phone while you're driving is just as dangerous as handheld and you're four times as likely to get in a crash.
GENOVAWhich is actually your reaction time is slowed and your ability to see what's in the periphery, your peripheral vision narrows to the same extent as if you were just at the legal limit for being drunk.
GENOVARight. And here's why, if someone is in the car with you and you're chatting with the passenger in the passenger seat, your attention stays external. It stays present to the environment in front of you, so your reaction time, your ability to see a pedestrian beginning to cross the road or brake lights suddenly appearing are fine.
GENOVABut if you're talking to someone who isn't in the car with you, even, you know, hands-free, just sort of in the air, your attention diverts from what's in front of you and goes internal. And you start sort of just thinking inside yourself and talking to the person internally. And so you, your reaction time slows and your ability to see what's happening in the peripheral vision narrows.
REHMSo the whole functioning of the brain changes?
GENOVAIt changes, it becomes dramatically different and it's unsafe.
REHMAnd you, now?
GENOVARight, so I used to talk hands-free. I never...
GENOVAWith Bluetooth, and I have, since learning this, I've disconnected the Bluetooth because it's so, it would be so tempting to just hit the button and say hello, because what if it's some important call. But since disconnecting the Bluetooth, what I've found is that I thought I would feel anxious about being unplugged and disconnected for those, you know, minutes or whatever, however long I'm in the car, and it's actually feels -- it's peaceful. I feel great. I cannot be reached while I'm in the car and that's fine. The world hasn't collapsed.
REHMIndeed. All right, let's go back to the phones, to Cynthia in St. Louis, Mo., good morning.
CYNTHIAGood morning. Lisa, I want to say, I really enjoyed your book, "Still Alice." It just, I feel it gave me some empathy and gave me something to think about that I hadn't thought about before, and I'm calling because I'm an occupational therapist and I was wondering if you have any advice for myself and other therapists about how we can best serve people that have left neglect?
GENOVAWell, thank you for comments about "Still Alice," first. And thank you for what it is that you do. I met so many occupational therapists while I was doing the research for this book, and your job is so amazing to me. Occupational therapists really help people with brain injuries start to use the activities of daily living again. So, start to learn to brush teeth and to get dressed and all the simple things we take for granted with our, you know, working brains. The simplest things, you have to sort of start over.
GENOVAI think the biggest thing I saw with the occupational therapists are the ones who are still sort of very enthusiastic and not burnt out, the positive attitude that you're able to sort of inject your patients with, that sort of can-do attitude is sort of the biggest, probably the biggest predictor toward continued rehabilitation.
REHMWhat are the kinds of techniques that are used?
GENOVAFor something like left neglecteds, this constant reminder that there is a left side. So this idea of being consciously aware of there's a left, go look for it, go find it, scan to the left, look to the left, turn to the left. It’s such a bizarre thing for these patients to have to come to grips with. It’s like, one patient told me, it's like if I told you to look at the back of your head. You understand you have a back of your head, but how do you look there? That’s what it feels like. So occupational therapists, physical therapists, speech therapists play such an important role in getting patients who have this, back into their lives.
REHMDoes it ever go away?
GENOVAYes, it can. So some, you know, we don't understand a lot about brain recovery after a traumatic injury, whether it's left neglect or something like what Gabrielle Giffords is going through. But we do know that the brain has a remarkable ability to heal. The inflammation can go down, there can be recovery of function. Other parts of the brain can come in and take over function. So sometimes patients recover fully after a couple of weeks, just spontaneously.
GENOVASometimes it takes longer, up to a year is where you hope to see the most recovery. But people who I've met who've had this are a decade out and still recovering function, getting, you know, getting their driver's license finally after many, many years, because they've had that much recovery.
REHMWow, yeah, well that's great. Thanks for calling, Cynthia. To Syracuse, N.Y., good morning, Suzie.
SUZIEHello, I hope my phone's going to hold, 'cause it's almost dead.
REHMI hope you're not in your car.
SUZIEI just wanted to say I actually finished a book a couple of days ago, an audio, because I'm blind, and I really, really loved it. It (unintelligible) here and there 'cause I, in a way really understand some frustration about certain things. You did a remarkable job, that's actually all I wanted to say.
GENOVAThank you so much. I’m so glad you enjoyed it.
REHMIndeed. And so we know now that the book has been recorded.
GENOVAYes, yes, it has.
REHMThat's great. Did you do the reading?
GENOVAI did not. I delivered a book and a baby this year, so my daughter...
GENOVA...so I was in the middle of the newborn days when they needed to record this book, so.
REHMAll right, to Lily, who's here in Washington, D.C. Good morning.
LILYGood morning. I just wanted to thank Ms. Genova. My mother got, had a right ischemic stroke a year and a bit ago. And until we saw Dr. Sacks' book, there was no resources about this and it's such a strange thing because you just cannot imagine when, you know, your mother was like normal a few days ago. All of a sudden, you know, she not only just doesn't see the left, but doesn't think that concept exists at all and thinks we're crazy to think that there is something there.
LILYSo I just wanted to thank you and I can't wait to get my hands on the book but I also wanted to remind you, (word?) Sacks' book has more than the one story you said. It’s another story about an elderly lady who has left neglect, had it for a few years and is kind of like my mother when he describes it. But thank you very much for writing this book from all of us who have to, you know, experience it, but it's something now that we can have to look at. Thank you.
GENOVAThank you so much. I'll have to reread the book and find that story.
REHMThat must make you feel awfully good that you're bringing to the public's attention something that's lesser known but fairly prevalent?
GENOVAThank you, it does. It’s so rewarding. Even with Alzheimer's, which, you know, so many of us know and are touched by. We have a hard time understanding it, it's so baffling. So for different reasons, Alzheimer's, left neglect, here are some neurological conditions. One is very well, sort of, known and the other's not, but both of them are sort of voices we don't understand from the inside out. We’re sort of observers watching it, trying to understand it and not, it's very difficult to understand how someone perceives life with these two conditions. And so that was sort of my goal was to understand it from the perspective of the person who has it.
REHMHere is a comment from Facebook, Dennis says, "I suffered a severe concussion by way of a bad car crash six years ago. I've been neglectful of many things like deadlines for paying bills. I suffer terrible mood swings, live under what seems to be a cloud of doom every day. I don't find much happiness in life but I go on trying to better myself each day and even though the results may not be tangible or evident to the eye, I feel I'm better today than I was two years ago."
GENOVAWow, yeah. It's a hard road of recovery, you know, it's so life changing to, from in the blink of an eye, in an instant, all of what we take for granted and how our brains allow us to do the simplest things can disappear and you have to start back from zero. Yeah, it's a...
REHMAnd here's what Daniel has to say in an e-mail. He says, "Diane, that reading was so beautiful and terrifying at the same time." And in all caps, "NO MORE LOOKING AT THE PHONE WHILE DRIVING." But that doesn't take care of it all, because you're saying even talking on the phone will diminish the overall attention span, not to mention the peripheral zones.
GENOVARight. So, you know, I hope that, this is sort of one of the positive byproducts of this book is that I terrify people enough from this accident scene to sort of get them to think twice before using their phone in the cars.
REHMHere's another e-mail from Susan. She says, "my mother had a massive stroke on her left side and was left paralyzed on the right. She does not see food, people, objects on her right side. So, is there such a thing as right neglect?"
GENOVAThat's fascinating. I haven't heard of a right neglect and how I've always understood it is sort of how I explained it earlier, in that the part of your brain responsible for attention on the right side can pay attention to the whole world, but the part of your brain responsible for paying attention on the left side only pays attention to the right. So if you have damage to the left hemisphere and you lose that ability to pay attention to what's on the right, well your right side of your brain is still paying attention to the whole world, so you don't notice a deficit.
GENOVAShe's paralyzed on the right, that's a motor function. It may be that she is not caring so much what's on the right because she can't do anything about it. But maybe she has some attention problems there as well. Again, this is sort of how it's written in textbooks but we're human beings, and there's a lot of variation and she might have some differences in how her brain is organized.
REHMBetsy in Plano, Tx. writes, "please don't leave the impression that a child with attention deficit disorder cannot achieve and contribute. My daughter has overcome ADD and is a National Merit Scholar, a leader of young people and a future math teacher." And surely I did not hope to leave that terrible impression with our listeners, because many people go way beyond ADD and achieve.
GENOVAOf course, and that is not the message that's in the book. In fact, we leave the story with Charlie loving where he's at and it's more about the relationship with him and his parents. And his parents at the beginning of the story were sort of disappointed in him and he's not achieving the way they had hoped that he would and they placed all of this academic burden on this little first grader. And what the journey does for both Charlie and his mom is get them to accept him for who he is and we see them adjust a few things in how his day goes, and it makes all the difference for him and so...
REHMFor example, cutting the questions into individual parts instead of having the whole page for Charlie to try to absorb, which he has a terrible time doing.
GENOVARight. So just simple adjustments on how the information is presented to him revealed that he's a very smart kid.
REHMAnd Lisa Genova is the author of "Left Neglected," and you're listening to "The Diane Rehm Show." Let's go now to Manchester, Nh. Good morning, Liza, you're on the air.
LIZAHi, I'm completing my post-doctoral hours in clinical psychology at a rehab hospital and I just wanted to make the point that it's, when people hear about these conditions that they may have never heard of or been experienced with, that it's important not to lose sight of the person behind the disability. In other words, not to sensationalize stories like this, because people live with these things all the time and sometimes they're not as extreme, you know, as completely neglecting the whole left side. And like you were saying earlier, people adapt to these disabilities and they're definitely part of our society and it's important to remember that these are people behind the disability, not just amazing stories.
GENOVAI absolutely agree and my motivation for writing this was to write about a person who has this and to really humanize the condition and not just read about it in a textbook. I did a lot of research to write this story and came to know 10 people who have left neglect and are living with it and spoke with them constantly while I was writing the book and sort of, they were my litmus test and helped me over and over again, sort of write the truth under imaginary circumstances. And of course I couldn't represent everyone's experience with neglect and some have it more severe than others. But this is, hopefully, a truthful example and they've all given me the thumbs-up.
REHMDaniel in south Florida had an interesting question, talking about internalizing the conversation. He asked, "what's the difference between hands-free on the telephone and listening to the radio?"
GENOVAThat's a very good question. I don't know that I understand the answer to that. This is a new area of research and I, it's a great question, listening to an audio book, listening to the radio, how does that keep our attention present in the external environment whereas on the phone we go internal. I don't know the answer to that.
REHMSo more and more research is going to have to be done before we get the answers to these questions?
GENOVAYeah, I think that if you want a scientific explanation, maybe we don't have that yet. I haven't come across it, but if you want to just believe that being on your phone in your car is more dangerous than staying off it, then that's something that we know now.
REHMNew book in the works?
GENOVAYes, my next book is called "Love Anthony." It will be out in a couple of years. It's about two women who are connected to each other through a boy with autism.
REHMLisa Genova, her new book is titled "Left Neglected." Her previous book all about a woman suffering from Alzheimer’s, is titled "Still Alice." Thank you so much for your work and for being here.
GENOVAThank you Diane. It was a pleasure.
REHMThanks for listening, all. I'm Diane Rehm.
Most Recent Shows
There are more gun-related deaths in America than in any other industrialized nation. We discuss what makes the U.S. different and why some hold out hope that change is possible.
China's market turmoil reverberates worldwide. More than 100 people die this week in Europe's ongoing migrant crisis. And the new U.S. envoy for Syria pushes for a political solution to the civil war. A panel of journalists joins Diane for analysis of the week's top international news stories.
The shooting of two journalists renews calls for stricter gun controls. President Obama visits New Orleans to mark the tenth anniversary of Hurricane Katrina. And the U.S. stock market takes investors on a wild ride. A panel of journalists joins Diane for analysis of the week's top national news stories.