The Disease Sets In
Clive often worked until midnight seven days a week, and his routine was no different in the spring of 1985, when he first became ill. "He came home one night complaining of a headache," recalls Deborah. "It was nothing remarkable."
But the next day, a Monday, Clive's teeth were chattering, and his headache was so severe that he described it "as though someone is hitting me with a hammer." Deborah told him to stay in bed and phone her at work if he needed anything. "I can't remember your number," he said, though he called her at her office daily. When she gave him the number, she noticed that he wrote "Deborah Wearing" next to it, as if he didn't know her well.
Alarmed, Deborah called their doctor, who diagnosed flu and prescribed a painkiller for the headache. Two days later, after Clive told his wife he couldn't remember her name, she contacted the doctor again. He said that a local outbreak of an influenza strain mimicking meningitis was the cause of Clive's confusion. When Deborah returned home later that afternoon, she found Clive's bed empty and no sign of him in the apartment. She checked with neighbors, phoned the doctor and police.
"He's only been missing a few hours," an officer said. "If he's not back by morning, call us again."
Hours later, as she was beginning to despair, the phone rang. Police from a nearby station told her Clive was with them, okay but confused; he couldn't remember his address. When Deborah brought him home, he walked right by the entrance to their building.
Clive's temperature had risen to 104, so Deborah called an ambulance, and he was rushed to the hospital. There, he began slipping in and out of consciousness. "Stay with me, darling. Stay with me. I love you," Deborah urged in panic as doctors ordered a CAT scan and a spinal tap. Eleven long hours later, a physician told her that Clive had encephalitis -- an inflammation of the brain -- caused by the cold sore virus. "There's an 80 percent chance he'll die," he said.
"But he's never even had a cold sore," a stunned Deborah responded.
"The virus lies dormant in most of the population without symptoms," the doctor explained. "Very, very rarely it goes to the brain."
Just days earlier, the couple had talked about starting a family. Clive had three grown children from a previous marriage, but he and Deborah wanted two together. "I was hoping to get pregnant soon because Clive was getting older," she says. "Now I was being told it was likely my husband would die."
Over the next two days, Deborah spent every hour she could at Clive's bedside. On the third day, Deborah watched helplessly as Clive began having major seizures. In a fog, she listened as an attending physician told her Clive could end up a vegetable.
Her husband was treated with acyclovir, an antiviral drug that had just come on the market, but the virus had already caused his brain to swell. As it pressed against the unforgiving bone of the skull, it literally crushed itself. In the weeks that followed, Clive stabilized, his headaches subsiding, his temperature returning to normal. But scans would show that his brain had been virtually mulched.
Prof. Barbara Wilson, PhD, an internationally acclaimed Cambridge research scientist specializing in memory and knowledge, says, "The virus caused the destruction of Clive's brilliant mind."
"Not only had he lost his past," says Deborah, "he couldn't store any new memories." His speech was scrambled, and he used the word chicken to describe everything. When a doctor asked him what a tie was, or a pen, he would reply, in his authoritative voice, "a chicken." Then he started speaking backward. He suddenly remembered Deborah's name but pronounced it in reverse, as "Harobed."
Damage to his frontal lobes, which play a role in behavior and personality, caused a host of other peculiar symptoms. When Clive used an electric razor obsessively, shaving his face long after his facial hair -- including his eyebrows -- was gone, physicians realized he was suffering from a condition called perseveration, causing him to repeat behaviors endlessly. He went through periods of being maniacally childlike, popping out of closets to surprise people -- even jumping out of moving cars when taken off hospital grounds for brief visits home.
Then, three months after his hospitalization, Clive started having violent episodes. He banged nurses' heads against the wall, threw chairs, and even knocked Deborah to the ground. "I should have been frightened," she says, "but somehow I wasn't. This was still the man I adored. I knew it was the brain damage that made him out of control."
The episodes drove other family members and friends away, and at night, home alone, Deborah would throw herself on her bed and literally howl in anguish, yearning for the man she married. Through it all, Clive maintained some understanding that Deborah was his wife. His doctors say this is because emotional memory is stored in a part of Clive's brain that was less affected by the virus. "As ill as he was," Deborah says, her face softening, "he could still look into my eyes, and tell me he loved me."
That same emotional memory also made Clive aware of his loss. It was heartbreaking, says Deborah, to watch him attempt to understand what was happening to him -- and fail. He would sob, she says. "Imagine trying desperately to grasp who you are and not being able to."
One day, Deborah sat Clive down at the hospital chapel's organ, placing a piece of sheet music in front of him. He began to play. "It was like someone had given him a gift," says Deborah. Though he could no longer read books or a newspaper, Clive, it turned out, could still read music.
"Music is part of Clive's procedural memory, like walking or riding a bike," explains New York neurologist Oliver Sacks, author of the bestseller Awakenings.
"While he was playing music, he seemed normal," says Deborah. "The moment he stopped, he became lost again."