Forget Me Not
Suffering from extreme amnesia, he remembers nothing -- except the woman he loves.
Living With Amnesia
Clive Wearing stares into space. But the moment his wife, Deborah, enters the room, his face lights up, and he springs to his feet. He pulls Deborah to him, then whirls her around, sending her strawberry-blond curls flying. "You're gorgeous. I adore you."
It is exactly what he says each time he sees her. "Isn't she lovely?" he asks, kissing Deborah's hands as she giggles. Minutes later, when Deborah steps away, the light goes out of Clive's blue eyes. "Somebody told me my wife is here," he says worriedly, "but I've never seen her. I've never seen a human being for 20 years. I've never seen anything, heard anything. Days and nights are exactly the same. Precisely like death. I'd like to be alive."
When Deborah first met Clive, she was 21, a shy soprano in a choir he was conducting. He was 40, charismatic and driven; Deborah was taken with his Celtic, aquiline features. As the choir-master of the famed London Sinfonietta, director of the London Lassus Ensemble and one of the leading Renaissance music scholars in the world, he'd collaborated with such composers as John Tavener, Michael Nyman, even Beatle Ringo Starr. His special programs of Renaissance wedding music created for the BBC for Prince Charles and Princess Diana's wedding were leather-bound and presented to Diana at Buckingham Palace.
"The most important things cannot be spoken; that's why there's music," Clive told Deborah on their first date. She didn't know those words would sustain her in the years to come.
In March 1985, just 18 months after celebrating their marriage at the acclaimed Royal Festival Hall, Clive was struck down with what is believed to be the most extreme case of amnesia ever recorded. The herpes simplex virus, cause of the common cold sore, had traveled to his brain, wiping out his entire memory center, including the hippocampus and areas that control emotion and behavior. Known in this form as herpes encephalitis, the extremely rare disease strikes some 2,000 Americans a year. Left untreated, 70 percent of patients die; more than half of the survivors are left with neurological damage, though in most cases much less devastating than Clive's.
"It's as if Clive's every conscious moment is like waking up for the first time," explains Deborah, who now works as a communications officer for the British National Health Service. "Tests show that my husband's memory is just seven seconds long. Any new information given to him melts as fast as snowflakes on the skin, leaving no trace."
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."
Struggling to Cope
The chapel became the couple's sanctuary, especially during Clive's second year of hospitalization, when he was transferred to the psychiatric ward. While it was clear that her husband, who needed round-the-clock supervision, would never come home, Deborah felt that he belonged in a facility geared toward those with brain injuries. Unfortunately, there were no such centers in Britain at the time.
So in 1986, Deborah gave up her job and founded the Amnesia Association to lobby for such facilities. The work kept her busy, but the strain of her situation eventually took its toll. She was forced to sell the apartment where she and Clive had lived, and take part-time work in an arts center to pay the bills. One day, on her way out the door, she suddenly dropped to the floor like a stone. She lay there, without moving, in silent despair, too drained even to cry.
She took to punching walls, at home alone, to vent her fury. For a time, she became bulimic, repeatedly gaining and losing the same 25 pounds. "It was like there was an emptiness after my husband became sick, that I could never, ever fill," Deborah says. She struggled to accept that she would never be a mother. "I didn't want to go through life without having children, and I didn't want them with anyone but Clive."
Sinking into a deep depression, she fantasized about taking Clive to the beach and walking with him into the sea until they were swallowed up. Finally, she phoned a suicide hotline. "It wasn't so much that I wanted to die," she says. "I didn't know how to live."
Friends and doctors warned Deborah, who was by now 36, that clinging to her husband was unhealthy. They suggested that she start a new life.
Each morning for eight years, Clive had woken and uttered the same words: "I haven't heard anything, seen anything, touched anything, smelled anything. It's like being dead. How long have I been ill?" Deborah would try to answer, and the conversation would repeat itself in an endless loop. Finally, one spring day in 1993, Deborah realized she couldn't continue this way. "When I met Clive, he was everything I ever wanted in a man," she says. "I loved him desperately. But I could no longer cope with having the same conversation with him, over and over again, for years."
She began to think of going to the United States. "I just thought if I left England behind, I could leave all the pain behind too," she says.
In 1994, Deborah moved to Manhattan, living on her savings, taking courses, writing poetry, even dating. "I had two relationships, but neither lasted," she remembers. "I wasn't available. My heart belonged to Clive."
Several times a week, she phoned her husband in England to tell him about New York. Clive had moved into a specially created brain trauma unit in East Sussex and was doing well there. His medications had been adjusted, and he was no longer having violent episodes. Staff at the unit told Deborah that her husband wasn't aware that she had gone away.
Love Conquers All
During their transatlantic calls, Clive recognized his wife's voice and would immediately tell her he loved her.
As she shared what she'd been up to, Clive would respond with a longer conversational loop than before, though much of it was invented (a phenomenon referred to in neurology as confabulation, or unconsciously replacing fact with fantasy). "Wasn't Queen Victoria a fabulous queen? Did you know she invented the bath?" Clive would ask.
Deborah found herself being drawn back to her husband and, after three years in the United States, decided to return to England because she missed what she describes as the Cliveness of Clive. "It's his soul, I suppose," she says, "something that is not dependent on your mind or your ability. It's your identity, which is at a much deeper level."
To spend time with Clive is to be charmed by him. He laughs a lot, and others laugh with him, even when he asks innocently if you're the prime minister or the queen of England. "He thinks you're important because you're the first person he's ever seen since waking up," explains Deborah. He listens attentively and often makes seemingly appropriate responses, until he starts to repeat himself.
The brain injury unit where Clive will probably always live is home to ten patients. During the week, Deborah, who works full-time, talks regularly with her husband by phone; the pair live for the weekends when they are together.
On Easter Sunday 2002, the couple renewed their marriage vows in a local church. "We can't be husband and wife in some ways," Deborah says. "I can't have a physical relationship with him. But we are nevertheless committed to each other. I still think he's the best man in the world.
"He gives me unconditional love, undivided support, his whole attention," she continues. "When we are together, his every other thought is of me. How many women can say that about their husbands?"
On a recent weekend, Deborah pays Clive a visit just before lunchtime. In his room are photographs of his life before he became an amnesiac -- Clive conducting an orchestra, his wedding. They are intended to help habituate him with himself. The white sofa, in front of the window overlooking the garden, was a wedding gift to the couple; the Shaker chest of drawers is from their former home together.
The room also holds a piano and a small organ. Clive sits down to play and, to the unschooled ear, sounds extremely accomplished. "He makes errors now in timing, which he'd never have done before," Deborah says. Sliding onto the piano bench next to him, one arm around his waist, she picks up some sheet music and places it in front of her husband. As his fingers ripple across the keys, she looks at him adoringly, and begins to sing one of Schubert's lieder in accompaniment.
Gajendra Moksha