THE WOMAN WHO WAS ALWAYS FALLING DOWN
An excerpt from Dr. Norman Doidge’s new book on neuroplasticity
Among the many moving stories in The Brain That Changes Itself— a stroke victim’s againstall-odds recovery, blind people learning to see, aging brains rejuvenated, the amputation of a phantom limb—is this amazing account of Cheryl Schütz, whose life was horribly changed after a routine antibiotic.
CHERYL SCHILTZ feels like she’s perpetually falling. And because she feels like she’s falling, she falls.
When she stands up without support, she looks, within moments, as if she were standing on a precipice, about to plummet. First her head wobbles and tilts to one side, and her arms reach out to try to stabilize her stance. Soon her whole body is moving chaotically back and forth, and she looks like a person walking a tightrope in that frantic seesaw moment before losing his balance—except that both her feet are firmly planted on the ground, wide apart. She doesn’t look like she is only afraid of falling, more like she’s afraid of being pushed.
“You look like a person teetering on a bridge,” Isay.
“Yeah, I feel I am going to jump, even though I don’t want to.”
Watching her more closely, I can see that as she tries to stand still, she jerks, as though an invisible gang of hoodlums were pushing and shoving her, first from one side, then from another, cruelly trying to knock her over. Only this gang is actually inside her and
has been doing this to her for five years. When she tries to walk, she has to hold on to a wall, and still she staggers like a drunk.
For Cheryl there is no peace, even after she’s fallen to the floor.
“What do you feel when you’ve fallen?” I ask her. “Does the sense of falling go away
once you’ve landed?”
“There have been times,” says Cheryl, “when I literally lose the sense of the feeling of the floor... and an imaginary trap door opens up and swallows me.” Even when she has fallen, she feels she is still falling, perpetually, into an infinite abyss.
THERE HAVE BEEN TIMES WHEN I LITERALLY LOSE THE SENSE OF THE FEELING OF THE FLOOR... AND AN IMAGINARY TRAP DOOR OPENS UP AND SWALLOWS ME’
Cheryl’s problem is that her vestibular apparatus, the sensory organ for the balance system, isn’t working. She is very tired, and her sense that she is in free fall is driving her crazy because she can’t think about anything else. She fears the future. Soon after her problem began, she lost her job as an international sales representative and now lives on a disability check of $1,000 a month. She has a new-found fear of growing old. And she has a rare form of anxiety that has no name.
An unspoken and yet profound aspect of our well-being is based on having a normally
functioning sense of balance. In the 1930s the psychiatrist Paul Schilder studied how a healthy sense of being and a “stable” body image are related to the vestibular sense. When we talk of “feeling settled” or “unsettled,” “balanced” or “unbalanced,” “rooted” or “rootless,” “grounded” or “ungrounded,” we are speaking a vestibular language, the truth of which is fully apparent only in people like Cheryl. Not surprisingly, people with her disorder often fall to pieces psychologically, and many have committed suicide.
We have senses we don’t know we have— until we lose them; balance is one that normally works so well, so seamlessly, that it is not listed among the five that Aristotle
described and was overlooked for centuries afterward.
The balance system gives us our sense of orientation in space. Its sense organ, the vestibular apparatus, consists of three semicircular canals in the inner ear that tell us when we are upright and how gravity is affecting our bodies by detecting motion in threedimensional space. One canal detects movement in the horizontal plane, another in the vertical plane, and another when we are moving forward or backward. The semicircular canals contain little hairs in a fluid bath. When we move our head, the fluid stirs the hairs, which send a signal to our brains telling us that we have increased our velocity in a particular direction. Each movement requires a corresponding adjustment of the rest of the body. If we move our heads forward, our brains tell an appropriate segment of our
bodies to adjust, unconsciously, so that we can offset that change in our centre of gravity and maintain our balance. The signals from the vestibular apparatus go along a nerve to a specialized clump of neurons in our brain, called the “vestibular nuclei,” which process them, then send commands to our muscles to adjust themselves. A healthy vestibular apparatus also has a strong link to our visual system. When you run after a bus, with your head bouncing up and down as you race forward, you are able to keep that moving bus at the centre of your gaze because your vestibular apparatus sends messages to your brain, telling it the speed and direction in which you are running. These signals allow your brain to rotate and adjust the position of your eyeballs to keep them directed at your target, the bus.
I am with Cheryl and Paul Bach-y-Rita, one of the great pioneers in understanding brain plasticity, and his team, in one of his labs. Cheryl is hopeful about today’s experiment and is stoical but open about her condition. Yuri Danilov, the team biophysicist, does the calculations on the data they are gathering on Cheryl’s vestibular system. He is Russian, extremely smart, and has a deep accent. He says, “Cheryl is patient who has lost vestibular system—95 to 100 per cent.”
By any conventional standard, Cheryl’s case is a hopeless one. The conventional view sees the brain as made up of a group of specialized processing modules, genetically hardwired to perform specific functions and those alone, each developed and refined over millions of years of evolution. Once one of them is this damaged, it can’t be replaced. Now that her vestibular system is damaged, Cheryl has as much chance of regaining her balance as a person whose retina has been damaged has of seeing again.
But today all that is about to be challenged.
She is wearing a construction hat with holes in the side and a device inside it called an accelerometer. Licking a thin plastic strip with small electrodes on it, she places it on her tongue. The accelerometer in the hat sends signals to the strip, and both are attached to a nearby computer. She laughs at the way she looks in the hat, “because if I don’t laugh I will cry.”
This machine is one of Bach-y-Rita’s bizarrelooking prototypes. It will replace her vestibular apparatus and send balance signals to her brain from her tongue. The hat may reverse Cheryl’s current nightmare. In 1997, after a routine hysterectomy, Cheryl, then 39 years old, got a post-operative infection and was given the antibiotic gentamicin. Excessive use of gentamicin is known to poison the inner ear structures and can be responsible for hearing loss (which Cheryl doesn’t have), ringing in the ears (which she does), and devastation to the balance system. But because gentamicin is cheap and effective, it is still prescribed, though usually for only a brief period of time. Cheryl says she was given the drug way beyond the limit. And so she became one of a small tribe of gentamicin’s casualties, known among themselves as Wobblers.
Suddenly one day, she discovered she couldn’t stand without falling. She’d turn her head, and the whole room would move. She couldn’t figure out if she or the walls were causing the movement. Finally she got to her feet by hanging on to the wall and reached for the phone to call her doctor.
When she arrived at the hospital, the doctors gave her various tests to see if her ves-
tibular function was working. They poured freezing-cold and warm water into her ears and tilted her on a table. When they asked her to stand with her eyes closed, she fell over. A doctor told her, “You have no vestibular function.” The tests showed she had about two per cent of the function left.
EVEN ZIGZAGS ON A CARPET CAN TOPPLE HER, BY INITIATING A BURSTOF FALSE MESSAGES THAT MAKE HER THINK SHE’S STANDING CROOKEDLY WHEN SHE’S NOT
“He was,” she says, “so nonchalant. ‘It looks like a side effect of the gentamicin.’ ” Here Cheryl gets emotional. “Why in the world wasn’t I told about that? ‘It’s permanent,’ he said. I was alone. My mother had taken me to the doctor, but she went off to get the car and was waiting for me outside the hospital. My mother asked, ‘Is it going to be okay?’ And I looked at her and said, ‘It’s permanent ... this is never going to go away.’ ” Because the link between Cheryl’s vestibular apparatus and her visual system is damaged, her eyes can’t follow a moving target smoothly. “Everything I see bounces like a bad amateur video,” she says. “It’s as though everything I look at seems made ofJell-O, and with each step I take, everything wiggles.” Although she can’t track moving objects with her eyes, her vision is all she has to tell her that she is upright. Our eyes help us know where we are in space by fixing on horizontal lines. Once, when the lights went out, Cheryl immediately fell to the floor. But vision proves an unreliable crutch for her, because any kind of movement in front of her—even a person reaching out to her—exacerbates the falling feeling. Even zigzags on a carpet can topple her, by initiating a burst of false messages that make her think she’s standing crookedly when she’s not.
She suffers mental fatigue, as well, from being on constant high alert. It takes a lot of brain power to maintain an upright positionbrain power that is taken away from such mental functions as memory and the ability to calculate and reason.
While Yuri is readying the computer for Cheryl, I ask to try the machine. I put on the construction worker’s hat and slip into my mouth the plastic device with electrodes on it, called a tongue display. It is flat, no thicker than a stick of chewing gum.
The accelerometer, or sensor, in the hat detects movement in two planes. As I nod
my head, the movement is translated onto a map on the computer screen that permits the team to monitor it. The same map is projected onto a small array of 144 electrodes implanted in the plastic strip on my tongue. As I tilt forward, electric shocks that feel like champagne bubbles go off on the front of my tongue, telling me that I am bending forward. On the computer screen I can see where my head is. As I tilt back, I feel the champagne swirl in a gentle wave to the back of my tongue. The same happens when I tilt to the sides. Then I close my eyes and experiment with finding my way in space with my tongue. I soon forget that the sensory information is coming from my tongue and can read where I am in space.
Cheryl takes the hat back; she keeps her balance by leaning against the table.
“Let’s begin,” says Yuri, adjusting the controls.
Cheryl puts on the hat and closes her eyes. She leans back from the table, keeping two fingers on it for contact. She doesn’t fall, though she has no indication whatsoever of what is up and down except the swirling of the champagne bubbles over her tongue. She lifts her fingers from the table. She’s not wobbling anymore. She starts to cry—the flood of tears that comes after a trauma; she can open up now that she has the hat on and feels safe. The first time she put on the hat, the
sense of perpetual falling left her—for the first time in five years. Her goal today is to stand, free, for 20 minutes, with the hat on, trying to keep centred. For anyone—not to mention a Wobbler—to stand straight for 20 minutes requires the training and skill of a guard at Buckingham Palace.
She looks peaceful. She makes minor corrections. The jerking has stopped, and the mysterious demons that seemed to be inside her, pushing her, shoving her, have vanished. Her brain is decoding signals from her artificial vestibular apparatus. For her, these moments of peace are a miracle—a neuroplastic miracle, because somehow these tingling sensations on her tongue, which normally make their way to the part of the brain called the sensory cortex—the thin layer on the surface of the brain that processes the sense of touch—are making their way, through a novel pathway in the brain, to the brain area that processes balance.
“We are now working on getting this device small enough so that it is hidden in the mouth,” says Bach-y-Rita, “like an orthodontist’s mouth retainer. That’s our goal. Then she, and anyone with this problem, will have a normal life restored. Someone like Cheryl should be able to wear the apparatus, talk and eat without anyone knowing she has it.
“But this isn’t just going to affect people damaged by gentamicin,” he continues. “There was an article in the New York Times yesterday on falls in the elderly. Old people are more frightened of falling than of being mugged. A third of the elderly fall, and because they fear falling, they stay home, don’t use their limbs, and become more physically frail. But I think part of the problem is that the vestibular sense—just like hearing, taste, eyesight, and our other senses—starts to weaken as we age. This device will help them.”
“It’s time,” says Yuri, turning off the machine.
Now comes the second neuroplastic marvel. Cheryl removes the tongue device and takes off the hat. She gives a big grin, stands free with her eyes closed, and doesn’t fall. Then she opens her eyes and, still not touching the table, lifts one foot off the ground, so she’s balancing on the other.
“I love this guy,” she says, and goes over and gives Bach-y-Rita a hug. She comes over to me. She’s overflowing with emotion, overwhelmed by feeling the world under her feet again, and she gives me a hug too.
“I feel anchored and solid. I don’t have to think where my muscles are. I can actually think of other things.” She returns to Yuri and gives him a kiss.
“I have to emphasize why this is a miracle,” says Yuri, who considers himself a data-driven skeptic. “She has almost no natural sensors.
For the past 20 minutes we provided her with an artificial sensor. But the real miracle is what is happening now that we have removed the device, and she doesn’t have either an artificial or a natural vestibular apparatus. We are awakening some kind of force inside her.”
The first time they tried the hat, Cheryl wore it for only a minute. They noticed that after she took it off, there was a “residual effect” that lasted about 20 seconds, a third of the time she wore the device. Then Cheryl wore the hat for two minutes and the residual effect lasted about 40 seconds. Then they went up to about 20 minutes, expecting a residual effect of just under seven minutes. But instead of lasting a third of the time, it lasted triple the time, a full hour. Today, Bachy-Rita says, they are experimenting to see if 20 more minutes on the device will lead to some kind of training effect, so that the residual effect will last even longer.
Cheryl starts clowning and showing off. “I can walk like a woman again. That’s probably not important to most people, but it means a lot that I don’t have to walk with my feet wide apart now.”
She gets up on a chair and jumps off. She
bends down to pick things up off the floor, to show she can right herself. “Last time I did this, I was able to jump rope in the residual time.”
«RAÍNFULCINDERELLA STORY. COMING DOWN FROM NORMALCY IS VERYHARD. WHEN IT HAPPENS, SHE FEELS SHE HAS DIED, COME TO LIFE. AND THEN DIED AGAIN.
“What is amazing,” says Yuri, “is that she doesn’t just keep her posture. After some time on the device, she behaves almost normally. Balancing on a beam. Driving a car. It is the recovery of the vestibular function. When she moves her head, she can keep her focus on her target—the link between the visual and vestibular systems is also recovered.”
I look up, and Cheryl is dancing with Bach-y-Rita.
A FEW DAYS later an email for Bach-y-Rita arrives from Cheryl, her report from home about how long the residual time lasted. “Total residual time was: 3 hours, 20 minutes... The wobbling begins in my head—just like usual... I am having trouble finding words... Swimming feeling in my head. Tired, exhausted... Depressed.”
A painful Cinderella story. Coming down from normalcy is very hard. When it happens, she feels she has died, come to life, and then died again. On the other hand, three hours and 20 minutes after only 20 minutes on the machine is residual time 10 times greater than the time on the device. She is the first Wobbler ever to have been treated, and even if the residual time never grows longer, she could now wear the device briefly four times a day and have a normal life. But there is good reason to expect more, since each session seems to be training her brain to extend the residual time. If this keeps up...
Reprinted by arrangement with Viking, a member of Penguin Group (USA) Inc., from The Brain That Changes Itself by Norman Doidge, MD. Copyright (c) Norman Doidge, MD 2007
... It did keep up. Over the next year Cheryl wore the device more frequently to get relief and build up her residual effect. Her residual effect progressed to multiple hours, to days, and then to four months. Now she does not use the device at all and no longer considers herself a Wobbler. M