The Forgetting

by David Shenk

  The vacant ghost of Emerson was sitting quietly at the desk in his study. “Father,” said Ellen, gently alerting Emerson to his uninvited guests. He looked up at them and smiled, but said nothing. Then, slowly rising from his desk, he offered his hand and gestured vaguely toward some empty chairs. But as soon as he had turned away for just a moment, something very unsettling happened: Emerson wandered away from his visitors and toward the window. There, he stood for a while, apparently oblivious to any other presence in the room. In a split instant, he seemed to have forgotten entirely about the others.

  Ellen, who had been slowly losing her father for more than a dozen years, started to cry and left the room, but Louisa and Edward stayed on quietly. After a few minutes, Emerson headed back to his desk, noticing them along the way. Again, he bowed a silent greeting, then sat down at the desk; once more, out of sight, out of mind.

  What no doctor in 1881 could have known was that Emerson was by now operating with a virtually obliterated hippocampus, occasioning a virtually perfect case of anterograde amnesia—the loss of ability to create any new memories. If his was an Alzheimer’s pathology, plaques and tangles germinating in the hippocampal formation had first started to create a noticeable disturbance in Emerson’s functioning almost fifteen years earlier. Since that time, as the unwelcome particles spread to other regions of the brain, they also continued to proliferate in their original nest. Slowly, steadily, a critical mass of neurons and connections between neurons had been hacked apart; probably no more than half of the original healthy cells now remained. In this state, not only was the hippocampus completely incapable of consolidating short-term into long-term memories; it could not even establish “working memories” of a duration of minutes.

  All that was left, then, was a limited capacity for “immediate memory” of mere seconds. Emerson was still conscious, and somewhat sentient. He could still coalesce different fields of information—verbal, visual, auditory—into a cogent sense of the present tense, a working (if constricted) consciousness. He was still, in some sense, there.

  But how much of the great mind remained was an open question. Gently probing that consciousness for its eroding boundary, his old friend Louisa now spoke up in a nervous attempt to end the dreadful silence in the room.

  “Have you read this new book by Ruskin yet?” she asked.

  The voice didn’t register. Emerson rose slowly and looked up at Louisa. “Did you speak to me, madam?” he asked. At the moment, he had no apparent recognition of a friend of nearly half a century—the realization of which sent Louisa into tears. As she retreated to the other side of the room, Bok, now left alone with Emerson, saw his opportunity and blurted out his long-planned request.

  “I thought, perhaps, Mr. Emerson, that you might be able to favor me with a letter from Carlyle.”

  “Carlyle? Did you say Carlyle?”

  “Yes,” repeated Bok. “Thomas Carlyle.”

  “Yes, to be sure. Carlyle. Yes, he was here this morning. He will be here again tomorrow morning.” In fact, as even Bok knew, Carlyle lived in England. The two had not seen each other for many years.

  There was a pause, into which Emerson lost his train of thought. Emerson looked at the boy for a cue. “You were saying?”

  Bok repeated his request. Could Emerson give him one of the original Carlyle letters?

  “Oh, I think so, I think so. Let me see. Yes, here in this drawer I have many letters from Carlyle.” He ruffled through some papers in his desk drawer and then again lost himself. More quiet moments passed. Finally, Bok, sensing correctly that his visit was about to come to an end, pared down his request. He asked for a simple autograph.

  “Mr. Emerson,” Bok said, “will you be so good as to write your name in this book for me?”

  “Name?” said a puzzled Emerson.

  “Yes, please. Your name: Ralph Waldo Emerson.”

  “Please write out the name you want, and I will copy it for you if I can.”

  Bok, stunned, wrote out “R. Waldo Emerson, Concord, November 22, 1881,” on a slip of paper and handed it to Emerson along with the book. Emerson then copied Bok’s dictation, very slowly copying letter by letter:

  (Notice the extra “o” in Concord. In his fog, Emerson had misspelled the town which he himself had made world-famous.)

  After the autograph came the most chilling occurrence yet. Emerson forgot about signing his name just as soon as he had done so. A few moments after Bok placed the autograph book back in his pocket, Emerson caught sight of the slip with Bok’s handwriting on his desk and fell into a wide smile.

  “You wish me to write my name?” he said. “With pleasure. Have you a book with you?”

  Bok, now “overcome with astonishment,” again handed him the autograph book. And so it was that Emerson autographed Bok’s book not once but twice, bestowing on the young man two separate handwritten pieces of evidence of having met the great Transcendentalist in person—when, as a matter of both neurobiology and humanity, he had arguably never met Emerson at all.

  Two weeks later, Emerson was dead, of pneumonia.

  If Emerson was, as it appears in medical hindsight, afflicted with a reasonably straightforward case of what we now call Alzheimer’s disease, it is also clear that he was mercifully released from the scripted drama before its dismal finale. In the end, for those Alzheimer’s sufferers who do not die of something else along the way—pneumonia, stroke, heart failure, cancer, etc.—speech dissolves completely, incontinence sets in, muscles become stiff, walking becomes impossible; the face loses all elasticity, breathing becomes labored, swallowing ceases. All of this happens slowly, incrementally, insidiously, over months or even years.

  In the brain, the pathway of the disease is the steady continuation of retrogenesis completing its relentless undoing on the way back to birth, the plaques and tangles moving into those regions that control gross motor function and are the very first to become myelinated in an infant.

  Stage

  7c

  Can no longer walk without assistance

  7d

  Can no longer sit up without assistance

  7e

  Can no longer smile

  7f

  Can no longer hold up head

  After the motor skills begin to collapse, limiting the patient to a wheelchair and then to a bed; after the eyes lose their ability to focus, something happens that is chilling even for this disease: the return of the infant reflexes.

  In normal development, infants younger than six months will, when the soles of their feet are stimulated, raise their big toe up and spread their other toes outward. This is called the Babinski sign, after the French neurologist Joseph François Félix Babinski, who first described the phenomenon in 1903. The Babinski sign disappears after approximately six months of age; from then on the toes reflex downward in response to the same stimulus. Alzheimer’s patients reclaim the Babinski sign (also now called the plantar response) in the very late stages, along with the other well-known infant reflexes: rooting, sucking, grasping. They all come back. If you scratch the palm of a late-stage patient, you might notice a twitch of the chin muscle on the same side. If you put your finger in the palm of his hand, you’ll feel an instant, familiar grab.

  After much of the cortex has been decimated, and thinking and mobility are all but at an end, the tangles launch their final assault on the brain in its most primitive and evolutionarily oldest region: the brainstem, at the base of the brain, just above the spinal cord. The brainstem controls involuntary, hard-wired functions such as breathing, blinking, blood pressure, heart rate, and sleeping cycles. It regulates the lungs, intestines, liver, kidneys, pancreas, and other organs, freeing up the cortex to worry about sensations, movements, and ideas. A person with extensive cortical damage but an intact brainstem can live for years in a “persistent vegetative state” with feeding tubes and meticulous care. But Alzheimer’s does not let that happen, It finishes the job by slowly destroying the brainstem just as it ha
s destroyed the hippocampus and the other regions of the brain along the way.

  No matter how long the end has been anticipated by friends and family, no one knows quite what to expect. On the Alzheimer List, Stephanie Zeman, a nurse specializing in dementia care, counseled her listmates about the final path toward death. “The last few days of life for most people with dementia,” she said, “go something like this: The person will stop taking anything by mouth. They may sleep a lot. At this point families worry about the discomfort of hunger or thirst. Studies indicate that at this stage the person does not experience discomfort from either hunger or thirst because the body is literally shutting down. This is a natural process. The digestive system and kidneys can no longer process nutrients or eliminate waste normally. Loading the system with IV fluids often puts the person into congestive heart failure and their lungs may become congested because the heart is also beginning to fail and cannot pump the larger blood volume any more.

  “The hands and feet will begin to feel cold and may develop what is called mottling, a blotchy look, because now some of the tissues are not getting a normal level of oxygen. The person is now fairly unresponsive and their breathing becomes shallower and may sound noisy from an accumulation of fluids in their throat. At this point the head can be elevated slightly and turned to the side to help with this. This stage may last a day or more. Hands and feet are now very cold. Family may want to put blankets on the person but in fact, as the body shuts down, it conserves all of its resources for the trunk and brain so the core body temperature is not subnormal but may in fact, be elevated. A light sheet is usually all that is needed.

  “The end of life is usually very quiet and the person just slips away. Families at the bedside may suddenly realize the person is not breathing any more. Within a few minutes the heart stops and the person is truly at rest.”

  Life passes, and the caregiver can no longer give care. Into the void rushes a powerful sea of emotion, with uneven waves of relief, regret, guilt, anger, emptiness, and renewed purpose. On the surface, the caregiver is finally cut loose from an extraordinary burden, and is relieved. The long decline is over.

  Under any circumstances, mourning a lost life is a complex emotional event. With Alzheimer’s, though, it is particularly torturous because in this long disease there have already been so many expirations along the way. In Man’s Search for Meaning, Viktor Frankl raised the specter of “emotional death,” the death of the spirit occurring well before the death of the actual body. Alzheimer’s specializes in such split-level death. The final passing from Alzheimer’s is really just the last in a long series of deaths. It is death not by a thousand cuts but by a thousand subtractions.

  This understanding of Alzheimer’s death, in turn, suggests something important about death in general that ordinarily goes unnoticed. The truth is that, no matter the cause, death is never a single end but a collection of ends that are ordinarily so tightly bound together that they appear to be one entity. In the same way that visible light usually appears to be a single colorless article, death usually looks like a single experience. One moment the person is there, alive, and the next moment—flick—the light switches off and the person is gone. Here, then not here. The doctor looks over at the clock on the wall and quietly says, “Time of death, 11:19.”

  But the reality of death is not so crisp. Even when the dying is instantaneous, as from a catastrophic collision, death is not just the squelching of the heart, not just the end of oxygen to the brain, not just the cessation of energy in the body. It is the smothering of a veritable universe of living fibers, the death of billions of individual cells and trillions of connections among those cells. A constellation of memories is dissolved, as are habits, feelings, cravings, annoyances. Not just a body, but its constituent parts: ten long fingers and ten knobby toes, a playful mouth, eyes that can be piercing or despondent.

  Why are so many people fascinated by Alzheimer’s disease? Because it is not only a disease, but also a prism through which we can view life in ways not normally available to us. Through the Alzheimer’s prism, we can experience life’s constituent parts and understand better its resonances and quirks. And as the disease relentlessly progresses toward the final dimming of the sufferer, it forces us to experience death in a way it is rarely otherwise experienced. What is usually a quick flicker we see in super slow motion, over years. It is more painful than many people can even imagine, but it is also perhaps the most poignant of all reminders of why and how human life is so extraordinary. It is our best lens on the meaning of loss.

  Like Emerson, Jonathan Swift did not live long enough with his progressive dementia to unravel completely. He did, though, die quite a few deaths along the way to his final passing. His late stages were marked by intensive walking, sometimes up to ten hours a day. He gradually lost access to nearly all his words and would rarely speak. Once, near the end, a servant picked up Swift’s watch to find out the time. Curious, Swift managed to utter “Bring it here” and stared at the watch for some time. He also once reached for a knife; when it was taken away, he shrugged his shoulders and said, “I am what I am. I am what I am.”

  His last recorded words were spoken to his servant. He couldn’t find the words that he wanted, and finally settled for “I am a fool.” Swift died mourning the death of his own intellect. He died grieving for himself.

  I had a dream three nights after Dad died: The telephone rang and I answered. Turning around I saw my father—no longer emaciated and ill with cancer, but round, rosy, and healthy. He put his arms around me and said, “I just want you to know that everything’s all right.”

  Strange, but I had no such dream about Mother returning after her death. Alzheimer’s had taken so much from her and from us that she, literally, didn’t seem to linger here on earth. As my daughter said, “It’s almost like Grandma said, I’m outta here!’” Who can blame her?

  However, shortly after her death my father returned in a dream, wearing an absolutely terrible red plaid jacket. (Only mother could have gotten him to wear that thing! She loved red plaid.) He said that Mother had sent him to tell me they were together and all was well

  I learned to not be afraid to hurt. I learned to get all the help I needed in order to heal. As a result I’m beginning to remember the happier side of Mother.

  —S.P.

  Denver, Colorado

  Chapter 16

  THINGS TO AVOID

  Doctors cannot yet cure Alzheimer’s, or prevent it, or even mask its symptoms for very long. But hundreds of studies have begun to produce a pointillist portrait of how people can help themselves—things to do for the body, mind, and spirit that might reduce the risk of getting the disease, or at least delay its onset:

  Avoid head injuries.

  Avoid fatty foods.

  Avoid high blood pressure.

  Eat foods rich in antioxidants, which eliminate damaging free-radical molecules. Eat, specifically: prunes, raisins, blueberries, blackberries, kale, strawberries, spinach, raspberries, brussels sprouts, plums, alfalfa sprouts, broccoli, beets, oranges, red grapes, red peppers, and cherries. (Foods listed according to their antioxidant content, in descending order.)

  Eat foods rich in folic acid, and in vitamins B6, B12, C, and E.

  Eat tuna, salmon, and other foods rich in fatty acids.

  Don’t drink too much alcohol. (A moderate amount might be slightly beneficial.)

  Don’t skimp on sleep. (Sleep is rejuvenating to the brain and the body; sleep seems to play a very important role in long-term memory formation.)

  Exercise.

  Maintain a high level of social contact (and consider marriage—one study shows fewer married people getting Alzheimer’s).

  If you are a woman past menopause, consider estrogen replacement therapy. (Some studies suggest it may reduce Alzheimer’s incidence by as much as half.)

  If you like to chew gum, continue chewing gum. (This is very tentative. One study suggests a mysterious connection between c
hewing and the health of hippocampal cells.)

  If you regularly take nonsteroidal and-inflammatory drugs such as ibuprofen for another reason, continue. (Some studies show a benefit.)

  Get a thorough education.

  Keep your mind active. Read, discuss, debate, create, play word games, do crossword puzzles, meet new people, learn new languages. Studies show that people with very high levels of education, while not immune from Alzheimer’s, do tend to get the disease later than others.

  Ancients in Greece and Rome did not have to be goaded into keeping their minds limber. They had no choice. By necessity, they relied on mind and memory to an extent that people today would find hard to believe. The men that Emerson admired in his journal—“L. Scipio knew the name of every man in Rome.…Seneca could say two thousand words in one hearing”—had no convenient alternative. There was no printing press, no pen and ink; the cumbersome wax tablet was the best external device they had. So the mind was always the default notebook of choice.

  To put it to the most efficient use possible, the Greeks invented mnemonics—a technique to assist memory. The art of mnemonics was built around the observation that while the human capacity to remember ideas, language, and numbers seems frightfully limited, visual memory is nearly infallible. The hackneyed phrase “I never forget a face” turns out to be a literal fact of human biology; in tests running into the thousands of faces, there seems to be no limit to powers of recognition. By contrast, remembering a string of fifteen to twenty numbers is a strenuous chore.

  The strange disparity between visual memory and word/number memory impressed Greek intellectuals somewhere around the fourth century B.C. The legend is that mnemonics was first demonstrated by the poet Simonides of Ceos (556–468 B.C.), the sole survivor in the collapse of a large banquet hall. Simonides had just stepped outside the hall to receive a message when the roof caved in and crushed everyone inside. To his surprise, the poet found that he was able to reel off a flawless list of the victims, and to identify each crushed body. He did this by recalling where each person had been sitting in the banquet hall. It was as if he had a tiny map of the banquet hall imprinted somewhere in his brain.