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The Inside Story of the Ever-Changing Brain
by David Eagleman
Then it happened again the next day.
A neurologist hooked up Matthew with a cap of electrodes to measure his brain activity, and that's when he found the telltale signs of epilepsy. Matthew was put on seizure medications.
The medications helped, but not for long. Soon Matthew was having a series of intractable seizures, separated from one another first by an hour, then by forty-five minutes, then by thirty minutes—like the shortening durations between a woman's contractions during labor. After a time he was suffering a seizure every two minutes. Valerie and her husband, Jim, hurried Matthew to the hospital each time such a series began, and he'd be housed there for days to weeks. After several stints of this routine, they would wait until his "contractions" had reached the twenty-minute mark and then call ahead to the hospital, climb in the car, and get Matthew something to eat at McDonald's on the way there.
Matthew, meanwhile, labored to enjoy life between seizures.
The family checked into the hospital ten times each year. This routine continued for three years. Valerie and Jim began to mourn the loss of their healthy child—not because he was going to die, but because he was no longer going to live a normal life. They went through anger and denial. Their normal changed. Finally, during a three-week hospital stay, the neurologists had to allow that this problem was bigger than they knew how to handle at the local hospital.
So the family took an air ambulance flight from their home in Albuquerque, New Mexico, to Johns Hopkins hospital in Baltimore. It was here, in the pediatric intensive care unit, that they came to understand that Matthew had Rasmussen's encephalitis, a rare, chronic inflammatory disease. The problem with the disease is that it affects not just a small bit of the brain but an entire half. Valerie and Jim explored their options and were alarmed to learn there was only one known treatment for Matthew's condition: a hemispherectomy, or the surgical removal of an entire half of the brain. "I can't tell you anything the doctors said after that," Valerie told me. "One just shuts down, like everyone's talking a foreign language."
Valerie and Jim tried other approaches, but they proved fruitless. When Valerie called Johns Hopkins hospital to schedule the hemispherectomy some months later, the doctor asked her, "Are you sure?"
"Yes," she said.
"Can you look in the mirror every day and know you've chosen what you've needed to do?"
Valerie and Jim couldn't sleep beneath the crushing anxiety. Could Matthew survive the surgery? Was it even possible to live with half of the brain missing? And even if so, would the removal of one hemisphere be so debilitating as to offer Matthew a life on terms not worth taking?
But there were no more options. A normal life couldn't be lived in the shadow of multiple seizures each day. They found themselves weighing Matthew's assured disadvantages against an uncertain surgical outcome.
Matthew's parents flew him to the hospital in Baltimore. Under a small child-sized mask, Matthew drifted away into the anesthesia. A blade carefully opened a slit in his shaved scalp. A bone drill cut a circular burr hole in his skull.
Working patiently over the course of several hours, the surgeon removed half of the delicate pink material that underpinned Matthew's intellect, emotion, language, sense of humor, fears, and loves. The extracted brain tissue, useless outside its biological milieu, was banked in small containers. The empty half of Matthew's skull slowly filled up with cerebrospinal fluid, appearing in neuroimaging as a black void. In the recovery room, his parents drank hospital coffee and waited for Matthew to open his eyes. What would their son be like now? Who would he be with only half a brain?
[Editor's Note: If you'd like to know how Matthew's story works out, click here]
Excerpted from Livewired by David Eagleman. Copyright 2020 by David Eagleman 2020. Excerpted by permission of Pantheon Books. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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