I Forgot to Remember: A Memoir of Amnesia (8 page)

Of all the amnesia victims studied by scientists, Gene’s case may be the most like mine. I have what is called “complete retrograde amnesia.” The injury knocked out not just my episodic memory but also most of my semantic memory, my knowledge of the world. According to Jim, after the injury, my factual knowledge base was effectively empty: I didn’t know who I was and couldn’t recall that I had a husband or children or the identities of my parents or siblings. I didn’t know what a house was or that I lived in one. I didn’t know the purpose of school, or that I had ever attended one. I didn’t know what a city was; the name
Fort Worth
did not register, nor did the terms
Texas, United States,
and
Earth.
I didn’t know what a president was, and the name Ronald Reagan held no special significance for me.

I could speak, but my vocabulary extended to only maybe one hundred words. Jim tells me I couldn’t recall the names of the objects around me—the clock, the bed, the door—or their functions. I didn’t know what a utensil was, or how to use one. “And even after you figured out how to use a fork,” Jim recalls, “you gripped it in a fist, like a toddler.”

My hospital records offer some corroboration of Jim’s memories. Nurses’ logs show I struggled to answer simple “orientation” questions at times, although at other times (according to the medical records) I appear to have correctly stated who I was, where I
was, and what day it was. It is possible I somehow bluffed my way through these questions, or maybe the nurses weren’t paying very close attention to my answers. I certainly got through much of my life after the hospital through a combination of those two things.

For a long time after my injury, I suffered not just retrograde amnesia but also “anterograde amnesia,” the inability to form new memories. For months (even years) afterward, I would wake up “lost” in unfamiliar places. According to Jim, I could carry on conversations with nurses and family in the hospital, but I would lose my train of thought after a few minutes, and I could manage such a conversation “only if the person stayed in sight.” Communicating was a chore. “I remember [that] a lot—I would say a majority—of our communication became nonverbal, gesture-based,” Jim recalls. “That said, I also recall a ‘word book,’ a spiral notebook one of your therapists helped you develop. She would drill you on the words and add a new word or two every day. I remember your excitement at recognizing a new word as new, and then writing it down. I remember it was an almost terrifyingly small list in the beginning, and being reassured by the therapist that it would get better, so much so that your learning and vocabulary would hit a critical mass, and your vocabulary growth would take off. It did. But I also remember you writing simple letters to family and asking for your word book to help you.”

Here is a passage from a letter I wrote to my mother, shortly after the injury:

I hav to go to mor doctors be case fall lots to hitig head bad head ackes.

Like many other amnesiacs, I was lucky enough to retain some procedural memory. I didn’t completely lose the ability to speak,
although my vocabulary was severely limited. I didn’t entirely forget how to sit, stand, or walk, although the partial paralysis on my left side made all those tasks much more difficult. Based on the story about my riding a bicycle on the hospital roof—albeit with help from two burly orderlies—it’s clear that I must have been relatively strong and in good physical condition, which in turn may have helped with my overall recovery.

Other physical skills were lost. For instance, one nurse noted that I was unable to brush my hair, I was unable to drink from a cup, and I had to relearn how to eat. But I proved particularly adept at mimicking the actions of others. A physical therapist discovered that I could accomplish some physical tasks while watching myself in a mirror (tasks that were beyond me without it), apparently tapping some deep muscle memory.

Like many amnesiacs, I am told I had trouble remembering that I even had a damaged memory. In the early days of my recovery, “you didn’t seem to know that memory was an issue,” Jim recalls, and I had to be frequently reminded of my deficits. “There were times when I had the sense that you knew something was terribly wrong, but that was generally, and perhaps exclusively, when you were being asked to do something that you couldn’t do, or didn’t understand what was being asked of you because you didn’t understand the words being used.”

I have been told that my case is puzzling to scientists. The scope of my memory loss places me among the most severe cases of retrograde amnesia on record. Very few amnesiacs have lost all trace of episodic memory; very few are unable to recall a single life experience. I am unusual, too, in the extent of my recovery. But the most
confounding part of my story, for scientists, is the lack of visible damage to my brain. I sustained a head injury; of that there is no doubt. But the doctors who examined me after the accident found only faint evidence of palpable injury to my brain itself: on the CT scan I had in the hospital, and on an MRI of my spine that showed a sharply diminished flow of blood in the right vertebral artery, consistent with the partial paralysis on my left side. Those findings are, to this day, the sole direct evidence of physical damage to my brain.

“We always try to relate these conditions to neuroanatomy”: in other words, to trace memory loss to damage in specific areas of the brain, says Larry Squire, a memory scientist at the University of California, San Diego. “And we know what kinds of damage cause what types of conditions. But the cases that are particularly hard to relate to anatomy are head injuries,” because those injuries are random and unpredictable, and the exact location of damage can be hard to pinpoint.

According to Daniel Schacter, the Harvard scientist who studied the amnesiac Gene, damage to the medial temporal region at the inner core of my brain might have compromised my ability to form new episodic and semantic memories, and such damage might also have hindered my recall of old memories. Damage to the frontal lobe as recorded in my CT scan would affect my ability to comprehend the source of episodic memory “scenes” and my capacity to be aware of my memory loss.

But because my episodic memory was completely erased, Schacter says, “You would expect to see more evidence of brain damage” than my brain scans revealed. “It doesn’t sound like there was a detectable brain lesion.”

However, Michael Yassa, a researcher at Johns Hopkins, points out that
MRI technology has improved dramatically since the 1980s. He thinks it’s possible that if I got an MRI today, doctors would see some damage that wouldn’t have been visible back then. Assuming that I did, in fact, suffer an injury to my brain, there are at least three possibilities for where the damage could lie, according to Yassa. “One is, it could be a frontal lobe problem,” the area of the brain related to managing and making sense of episodic memories. “Two, it could be a hippocampus problem”; the hippocampus is an organ in the inner core of the brain that is critical to forming new episodic and semantic memories and to creating permanent memories. “Three, it could be a problem with the connection between the two.” If brain imaging shows no serious damage to either region, Yassa reasons, then the problem likely lies in that connection.

Larry Squire, at UC San Diego, says my case is particularly unusual in that I suffered “such extensive retrograde amnesia and not so much anterograde amnesia, at least not much that has persisted.” Amnesiacs with severe loss of past memories tend to also have chronic trouble making new memories. Squire suggests that I might have suffered damage to the lateral temporal cortex, the area adjacent to the medial temporal region and associated with long-term memory storage, in contrast to the medial temporal “core,” where those memories are built. “If one had a lesion that was primarily in the lateral temporal cortex, but the damage was such that it was still possible” for brain signals “to get into the medial temporal lobe,” such an injury “could approximate what’s being described,” he says.

All of these scientists are quick to note that complete retrograde amnesia is very rare—so rare that it is sometimes called “Hollywood amnesia,”
existing more in movies than in real life. Yassa believes the reason for my total memory loss could be that I was relatively young at the time of my injury. He says it is possible that, at the age of twenty-two, none of my memories were fully consolidated and etched into permanent storage. Many amnesia patients are much older than twenty-two when their memory deficits appear, and their earliest memories are, at that point, several decades in the past. And scientists don’t know precisely how long it takes the brain to fully consolidate memories, to render them permanent. It’s thought to take years, at least, and possibly decades. By Yassa’s theory, my life memories might have been in a transitory state at the time of my injury: not in the memory bank, so to speak, but in the truck, on its way to the bank. The injury robbed the truck. If that’s the case, my memories are not buried somewhere within my brain, waiting for some hypnotist or surgeon to access them: They are gone. Schacter, the Harvard scientist, disagrees: At age twenty-two, he reasons, my early childhood memories would have been fully consolidated into permanent storage. That I cannot access them is exceedingly unusual, he says, but not unprecedented; remember Gene, who lost all of his life memories at thirty.

There is one other possibility, one that has always haunted me: the possibility that my memory loss could be psychological. “Functional” or “psychogenic” amnesia is memory loss caused not by brain injury or illness but by some psychological reason. The classic Hollywood case is the Hitchcock film
Spellbound:
A young doctor, played by Gregory Peck, has forgotten who he is and taken on another man’s identity. A glamorous therapist, Ingrid Bergman,
helps him reclaim his identity by escorting him back to the place where he lost it: a mountain precipice where a friend had fallen to his death. Revisiting the site, the doctor relives the memory, and his lost identity comes flooding back.

After my release from the hospital, Jim took me to the neurologist about every two weeks. Jim says we lived for these appointments. One day, we showed up late, and were crushed when he refused to see me. At the same time, the way Jim tells it, I get the feeling that these appointments were an exercise in futility. The doctor would insist on seeing me alone, and afterward, I would have no idea of what I had said to him, or what he said to me. Then the doctor would give Jim a ninety-second generic summary and conclude with something like, “I’m not seeing any change.” He could find no physiological explanation for my memory loss, or for the lingering numbness in my left hand and foot. He gave me another MRI, and when the results came back, he told Jim, “I see absolutely nothing here. Her brain looks completely normal. I see no damage.” And then under his breath, “I think she’s just making all this up.”

Jim stopped taking me to the neurologist.

I get the feeling from everything I have heard that the doctors and everyone else in the medical community were maybe just as frustrated as Jim and I were. There didn’t seem to be any test or imaging that explained my symptoms. Everybody had told Jim that all of this was going to just be temporary, and when it wasn’t, it somehow became my fault. I was faking it. It was all in my head, psychological. And that makes absolutely no sense to me at all! Why would I
want
to be this way? Why would I—why would anyone—
choose
to be this way?