The Mind Wiped Clean

Amnesia doesn't only happen in the soap operas

Susan Kruglinski

"I had finally figured my life out," Amy Stevens says. "I was all set, I was cruising along, and then KA BOOM!"

In the year 2000, the 45-year-old with short, spiraling salt-and-pepper hair and bookish glasses decided to go back to school and pursue a master's degree in library science. With two children aged 7 and 10, a husband who taught music at the local elementary school, and a gray house with a lovely garden in her childhood town of Hamden, CT, she figured after graduation she would work in a flexible job she loved while raising her kids, and her husband would be able to retire from the school earlier than planned. So that year, Amy took some masters classes at a nearby college. And in that year, she also made new friends at her local Unitarian church, celebrated her children's birthdays, watched her son sing in an operetta, went to movies, read books and followed politics.

But by February of 2001, she had forgotten all of it. Her time spent in the classroom was erased, the people in her church became strangers, she had no holiday memories, and no recollections of what she had read or what had gone on in the world.

Months later, her family showed her the video of her son's singing performance. "When I saw the video, I was crying and I was laughing," she says, "but I didn't remember it."

At the start of 2001, Stevens had become gravely ill with a rare disorder called scleromyxedema and went into a coma for several days. When she awoke, she had lost an entire year of memories, most of which will probably never return.

"The whole year 2000 is wiped out," she says.

Amnesia is a phenomenon that has captured the public's imagination for years, as evidence in its frequent use as a story line in movies, books and television, and most famously in soap operas. In the romantically concocted world of the soaps, it is an ordinary malady, easily overcome. But the reality is that amnesia is a rare but devastating disorder -- the result of any of a wide array of calamities suffered by the body or psyche, whether it be a frightening experience or Alzheimer's disease. As in Steven's case, often it is a nearly undetectable handicap that only minimally disrupts the whole of a person's life. In other cases -- ones that often hit the newspapers because they are so colorful -- it can turn a life upside down or even reduce a person's reality to a perpetual present, with no future and no past. And while neuropsychologists are beginning to narrow the search for the exact brain deficits that cause amnesia, they are nowhere near figuring out how to rebuild lost memories -- if it's even possible at all.

But that actuality does not give pause to the writers of All My Children or As the World Turns. In 1948, James Thurber, who was a fan of radio soap operas, wrote that amnesia "strikes almost as often in Soapland as the common cold in our world." He added, "There have been as many as eight or nine amnesia cases on the air at any one time."

"It is one of those things that's always joked about," says Gabrielle Winkel, a senior editor at Soap Digest Weekly. "Evil twins and amnesia." And while Winkel, perhaps trying to bestow some dignity to the genre, claims that the story line has only been used "about five times in the last ten years," with little effort one can find at least seven characters currently featured on soap operas who have now or have recently had amnesia.

The theme has also been used lately in such television shows as Buffy the Vampire Slayer and 24, and was the plot vehicle for the offbeat and much-discussed movie Momento.

"I guess it's the opportunity to become somebody else," Amy Stevens says of the public attraction to amnesia. "A lot of people suffer from their memories. Then there's those few of us who can say, 'I'm clean.'"

The real stories of amnesia also excite the public, and current and past cases that are extreme make good newspaper copy. These cases also excite neurologists, many of whom consider the mysteries of memory the Holy Grail of the brain.

Last August, a man thought to be a victim of the attack on the World Trade Center was found with amnesia in a hospital in Manhattan. George V. Sims, 46, a vendor who worked near the Trade Centers, had been missing since Sept. 11. As the months passed, his family had to assume he was dead. But like a soap opera fantasy come to life, his mother received a call from a Manhattan hospital, asking for a photograph of their son, and a match was made. He has had amnesia for over a year, and has been newly diagnosed with schizophrenia. He does not remember his mother, his daughter, or his brother, and has no idea where he was on Sept. 11. Surely this outcome was the dream of many families of victims whose remains were not retrieved.

A recent case that has gotten international attention is that of Philip Staufen. The name "Philip Staufen" is actually the name of a medieval German king, but it was the first name the man came up with when he awoke with amnesia in a Toronto hospital in 1999. He had been mugged, and along with his wallet, lost his identity. Staufen, probably in his late twenties and with what seems to be a Yorkshire English accent, has had his photo and fingerprints circulated around the world in the hope that some family or friend will claim him for their own. But because he has no birth certificate or passport, Staufen is not allowed to leave Canada. He has ended up in a dingy rooming house in Vancouver, and has been apparently suffering from depression.

Historically, cases of extreme amnesia have become watershed studies for neurologists. The most famous case, which is considered by some in the field as the single most important case in neuropsychology, is that of H.M. In 1952, H.M., 27, had parts of his brain removed in an effort to alleviate his intractable epilepsy. While his seizures subsided somewhat, he lost all of his short term memory. Like the character in Momento, he ended up with "anterograde amnesia." He could only experience the present, forgetting it the moment it shifted into the past. He also had some "retrograde amnesia," or amnesia of his own history. He had lost all memory back to his sixteenth birthday. Because the doctors could pinpoint the newly destroyed parts of the brain -- those parts that they had removed during the operation -- for the first time doctors could guess the organs of the brain probably used in short-term, episodic memory, namely the hippocampus and the amygdala.

Dr. Yaakov Stern, a professor of clinical neuropsychology at the Taub Institute of Columbia University has worked with these kinds of extreme amnesia sufferers. Of one patient, he recalls, "He had a book that he carried around with him. You'd say, 'What does your daughter do?' and he had a section in the book where he'd written down what his daughter does. So he managed to use all of his other cognitive capacities to sort of hold together and string events along. I believe he was actively running a business. He led a very productive life."

Another fascinating case is that of Gene, who is a patient of the famous memory specialist Dr. Daniel L. Schacter. Gene suffered a profound head injury from a motorcycle accident in 1981 when he was 30 years old. His decimated life is a stark contrast to Hollywood's provocative portrayal of severe amnesiacs. He lives with his parents, and because he has no memory beyond a few moments ago, performs the same repetitive tasks and routines day after day, over and over. He has few friends, and does not even understand that he has amnesia. If he is told, he immediately forgets. When asked to remember something, such as his brother's tragic drowning, or an event the happened minutes ago, he is perplexed by his own inability to recollect. And as his life progresses, it does not occur to him to make plans or do anything new. He is doomed to a narrow, perpetual present, and sadly he will never escape this prison.

Amnesia is wildly misunderstood because it is actually a symptom, not an illness in itself, as is the common misconception. This symptom, although relatively rare, can be the consequence of a startling range of disorders. There is "psychogenic amnesia," which can result from emotional trauma or extreme stress. The myriad physical causes of amnesia include dementing illnesses (like Alzheimer's disease), stroke damage, extended alcoholism (this amnesia is often referred to as Korsakoff's syndrome), encephalitic brain damage, vitamin B-12 deficiency, seizures, head trauma, and carbon monoxide poisoning. "I saw one woman," says Dr. Stern, "There was something wrong with the heater in the store that she worked in -- she was working in a strip mall -- and it was kicking off carbon monoxide. She had a very profound amnesia."

The form of amnesia most people are familiar with is the loss of "episodic memory," which can include forgetting identities and events. But there are other kinds of memory, such as procedural memory, which is our "how-to" memory, and semantic memory, which has to do with associations, concepts and meanings.

While these are generally intact in amnesia, occasionally they are not.

In a case of encephalitic amnesia described by Italian neurologist Dr. Ennio De Renzi, the patient had a complete memory of his own life, but forgot the meanings of common words and the basic attributes of inanimate objects. For example, he could not remember where one might find a bar of soap. In its extreme, these sufferers may have similar problems to the famous doctor profiled by Oliver Sacks in his book "The Man Who Mistook His Wife for a Hat." With intellect intact, they see a chair and it puzzles them.

Dr. Stern acknowledges that these unusual cases have advanced the science of neurology. "When you see the system broken," he says, "sometimes it gives you insight into how it really works."

Scientists are also learning from anmesiacs about another layer of memory that had formally gone unnoticed -- that of implicit memory. They have found that anterograde amnesiacs who have episodic memory loss can learn from events in their lives without remembering those events. Dr. Stern gives the example of an amnesiac solving a complicated puzzle. He says that after several attempts at the puzzle "even though they might not ever remember doing it before, they might show improvement in solving that puzzle." The episodic memory is bypassed or perhaps hidden, and somehow the procedural memory fills in the gaps.

While neurologists gain much insight from studying the extreme cases of anterograde amnesia, these subjects are mercifully rare. More common is the retrograde amnesia of Amy Stevens, whose memory loss is debilitating but manageable. "I enjoy talking about it now," says Stevens. "It feels like it's this curiosity -- that I have this caché. I say I have amnesia and everyone goes 'Oooooh!'"

The source of her amnesia is unclear, but is likely a result of the trauma of her coma and seizures that marked the beginning of her bout with scleromyxedema. The disease is extremely rare and attacks the proteins in her blood. She must suffer through a "plasma feresis," which is similar to a dialysis, every five weeks. "It's not cancer, but the way I understand it is that it's similar," Stevens says. In January, 2001, after having a flu and showing signs of confusion, Stevens quickly slid into a coma and almost died. She was given four or five plasma fereses while unconscious. "It is a huge assault to get my blood completely circulated out and clean, and they did it four or five times in a row," she recalls. "That's what brought me back." When she woke up, she had to deal with both the reality of this devastating illness and the confusing loss of a year of her life. "I felt like Dorothy when she wakes up after coming back from Oz," she says of seeing her family for the first time. Seeing her children was especially unnerving. "I remembered them as 10 and seven, and they were 11 and eight."

Stevens describes the dawning of the reality that she had lost a year of memory: "I started realizing that something big happened, and at first I just did not believe it. I had a moment of panic. I thought, 'This is all a conspiracy. Nothing has happened to me, but everyone is trying to convince me that there's something wrong with me.' I took that leap of faith, even though it was really painful because I didn't want to believe them. I wanted to think, 'I'm fine, what's the problem?'" After some time at home, Stevens had to make her way out into the world and adjust to her newly altered life. "The other literary connection is Rip Van Winkle," she says. "My own children and their friends, the kids in church, the kids in their school, they all looked taller and bigger. Adults, their hair was different, or they had a beard. Driving down the street, there was a new McDonald over there that I didn't know."

But another phenomenon, little known but common to amnesiacs, was kicking in. Her emotional memory was intact. "I lost names. I lost where people came from and how they fit into my life," Stevens says. "But it was so wild. I would see a face, and I'd have this overwhelming, 'Oh, I'm glad to see this person, but who is this?' And I'd also have negative feelings, like I know I don't like that person, but I don't know who he is and I don't know why."

Stevens believes that she may have recovered some memories of the year 2000 when she weaned off some of her medications, and also simply because of the constant reminders of her past that she has absorbed over the last two years. "People will tell me what we did," she says, "and then I'll have that new information that becomes a memory. And again, its this whole big trust thing. I mean, they could tell me that I owe them 50 bucks and I'd say 'Okay.'" It is obvious in her conversations about the recovered memories that she has some confusion between her actual lost memories and new pseudo-memories developed from the information she gets from people about her past. Her refusal to differentiate between real and pseudo-memories seems to be one of her defense mechanisms against the overwhelming loss of the memories, and the burden of the illness that the loss is associated with. "I am still not sure if it is organic recovery or if it is because I've been reminded by others and have incorporated their words into my own. I can't tell the difference, and I haven't really bothered with it. It's depressing to say to yourself, 'You don't really remember, it's just what Molly said.'" On a lighter note, she adds, "I sort of like putting the puzzle back together. It doesn't really matter to me whether it came from inside or outside. I'm just glad to have the pieces."

But she has accepted that her mind will never be the same, and besides the retrograde amnesia, deals with a certain amount of short term memory loss. She now constantly writes lists and keeps a close tab on her Palm Pilot. "I think my brain was assaulted to the point where I have the brain of a 75- or 80-year-old," she says seriously.

And so, as the soap characters continue to conveniently acquire amnesia so that the actors can take a sabbatical and try their luck at prime time -- only to recover their memory when they have been rejected by the sitcoms -- there will also continue to be people like Amy Stevens who don't find this whimsical and romantic portrayal of the disability very amusing. They feel amnesia is not taken seriously.

"These people have no idea how terrifying it really is," says Stevens. "And I feel like I have only a sliver of that terror."

"That guy in Momento wasn't very romantic, was he?" asks Dr. Stern. "I see people who have Alzheimer's disease, who are developing memory problems and are getting worse and worse. You can really see them losing the world. To me that's a very sad thing to watch."