One day in August two granddaughters came to see him. Lullin was sitting in his armchair opposite the mantelpiece, and his visitors were to his right. From the left, two young men appeared. They were wearing magnificent cloaks, red and grey, and their hats were trimmed with silver. “What handsome gentlemen you’ve brought with you! Why didn’t you tell me they were coming?” But the young ladies swore that they saw no one. Like the handkerchief, the images of the two men dissolved within a few moments. They were followed by many more imaginary visitors in the next few weeks, all of them women; they were beautifully coifed and several of them had a small box on their head.…
Somewhat later Lullin was standing at the window when he saw a carriage approaching. It came to a halt at his neighbour’s house and, as he watched in amazement, the carriage grew bigger and bigger until it was level with the eaves of the house some thirty feet from the ground, with everything perfectly in proportion.… Lullin was amazed by the variety of images he saw: one time it was a swarm of specks that suddenly turned into a flight of pigeons, another time a group of dancing butterflies. Once he saw a rotating wheel floating in the air, the kind you saw in dockside cranes. On a stroll through the town he stopped to admire an enormous scaffolding, and when he arrived home he saw the same scaffolding standing in the living room, but then in miniature, less than a foot high.
As Lullin found, the hallucinations of CBS would come and go; his lasted for some months and then disappeared for good.
In Rosalie’s case, the hallucinations subsided within a few days, as mysteriously as they had appeared. Almost a year later, though, I got another phone call from the nurses, telling me that she was “in a terrible state.” Rosalie’s first words when she saw me were “All of a sudden, out of a clear blue sky, the Charles Bonnet has come back with a vengeance.” She described how a few days before, “figures started to walk around; the room seemed to crowd up. The walls turned into large gates; hundreds of people started to pour in. The women were dolled up, had beautiful green hats, gold-trimmed furs, but the men were terrifying—big, menacing, disreputable, disheveled, their lips moving as if they were talking.”
In that moment, the visions seemed absolutely real to Rosalie. She had all but forgotten that she had Charles Bonnet syndrome. She told me, “I was so frightened that I screamed and screamed, ‘Get them out of my room, open those gates! Get them out! Then shut the gates!’ ” She heard a nurse say of her, “She is not in her right mind.”
Now, three days later, Rosalie said to me, “I think I know what triggered it again.” She went on to say that she had had a highly stressful, exhausting time earlier in the week—a long, hot journey to see a gastrointestinal specialist on Long Island and a nasty fall backwards on the way. She arrived back many hours later, shocked, dehydrated, in a state of near collapse. She was put to bed and fell into a deep sleep. She awoke the next morning to the terrifying visions of people bursting through the walls of her room, which lasted for thirty-six hours. Then she started to feel somewhat better and recovered her insight into what was happening. At that point, she instructed a young volunteer to track down an account of Charles Bonnet syndrome on the internet and to give copies of this to the nursing home staff, so that they would know what had been going on.
Over the next few days, her visions grew much fainter and ceased altogether when she was talking with others or listening to music. Her hallucinations had become “shyer,” she said, and now occurred only in the evening, if she sat quietly. I thought of the passage in Remembrance of Things Past where Proust speaks of the church bells of Combray, how their sound seemed muted in the daytime, only to be heard when the hubbub and blare of the day had died down.
Charles Bonnet syndrome was considered rare before 1990—there were only a handful of case histories in the medical literature.2 I thought this strange, for working in old-age homes and nursing homes for over thirty years, I had seen a number of blind or purblind patients with complex visual hallucinations of the Charles Bonnet type (just as I had seen a number of deaf or nearly deaf patients with auditory—and most often musical—hallucinations). I wondered whether CBS was actually much commoner than the literature seemed to indicate. Recent studies have confirmed that this is the case, although CBS is still little recognized, even by doctors, and there is much to suggest that many or most cases are overlooked or misdiagnosed. Robert Teunisse and his colleagues, studying a population of nearly six hundred elderly patients with visual problems in Holland, found that almost 15 percent of them had complex hallucinations—of people, animals, or scenes—and as many as 80 percent had simple hallucinations—shapes and colors, sometimes patterns, but not formed images or scenes.
Most cases of CBS probably remain at this elementary level of simple patterns or colors. Patients who have simple (and perhaps transient or occasional) hallucinations of this type may not take much notice or remember to report them when they visit a doctor. But some people’s geometrical hallucinations are more persistent. One old lady with macular degeneration, learning of my interest in such matters, described how in the first two years of her visual impairment, she saw
a big blob of light circling around and then vanishing, followed by a colored flag in sharp focus … it looked exactly like the British flag. Where it came from, I do not know.… For the last few months I have been seeing hexagons, often hexagons in pink. At first there were also tangled lines inside the hexagons, and other little balls of color, yellow, pink, lavender, and blue. Now there are only black hexagons looking for all the world like bathroom tiles.3
While most people with CBS are aware that they are hallucinating (often by the very incongruity of their hallucinations), some hallucinations may be plausible and in context, as with the “handsome gentlemen” accompanying Lullin’s granddaughters, and these may, at least initially, be taken as real.4
With more complex hallucinations, it is typical to see faces, though they are almost never familiar. David Stewart, in an unpublished memoir, described this:
I had another hallucination.… This time it was faces, the most prominent of which was one of a man who might have been a burly ship captain. It wasn’t Popeye, but along those lines. The cap he was wearing was blue with a shiny black visor. His face was grey, the cheeks rather chubby, bright eyes and a decidedly bulbous nose. He was no one I had ever seen before. This was not a caricature, and he seemed very much alive, someone I felt I might like to know. He gazed at me with a benign, unblinking, and altogether incurious expression.
The burly ship captain, Stewart noted, appeared as he was listening to an audiobook biography of George Washington, which included a reference to some sailors. He mentioned, too, that he had one hallucination “which nearly replicated a Brueghel painting I once—and only once—observed in Brussels,” and another of a coach he thought might have belonged to Samuel Pepys shortly after he read a biography of Pepys.
While some hallucinatory faces, like Stewart’s ship captain, seem coherent and plausible, others may be grossly distorted or composed, sometimes, of fragments—a nose, part of a mouth, an eye, a huge head of hair, all juxtaposed in a seemingly haphazard way.
Sometimes people with CBS may hallucinate letters, lines of print, musical notes, numerals, mathematical symbols, or other types of notation. The overall term “text hallucinations” is used for such visions, although for the most part what is seen cannot be read or played and may indeed be nonsensical. My correspondent Dorothy S. mentioned this as one of her many CBS hallucinations:
Then there are the words. They are from no known language, some have no vowels, some have too many: “skeeeekkseegsky.” It is hard for me to capture them as they move swiftly from side to side and also advance and retreat.… Sometimes I catch a glimpse of part of my name, or a version of it: “Doro” or “Dorthoy.”
Sometimes the hallucinated text has an obvious association with experience, as with one man who wrote to me that he would see Hebrew letters all over the walls for about six weeks following Yom
Kippur each year. Another man, who was nearly blind from glaucoma, reported that often he saw lines of print in balloons, “like the balloons in comic strips,” though he could not decipher the words. Text hallucinations are not uncommon; Dominic ffytche, who has seen hundreds of people with CBS, estimates that about a quarter of them have text hallucinations of one sort or another.
Marjorie J. wrote to me in 1995 about what she called her “musical eyes”:
I am a 77-year-old woman with glaucoma damage to mostly the lower half of my vision. About two months ago, I started to see music, lines, spaces, notes, clefs—in fact written music on everything I looked at, but only where the blindness exists. I ignored it for a while, but when I was visiting the Seattle Art Museum one day and I saw the lines of the explanatory notes as music, I knew I was really having some kind of hallucination.
… I had been playing the piano and really concentrating on music prior to the musical hallucinations … it was right before my cataract was removed, and I had to concentrate hard to see the notes. Occasionally I’ll see crossword puzzle squares … but the music does not go away. I’ve been told the brain refuses to accept the fact that there is visual loss and fills in—with music in my case.
Arthur S., a surgeon who is also a fine amateur pianist, is losing his vision from macular degeneration. In 2007, he started “seeing” musical notation for the first time. Its appearance was extremely realistic, the staves and clefs boldly printed on a white background, “just like a sheet of real music”—and Arthur wondered for a moment whether some part of his brain was now generating his own original music. But when he looked more closely, he realized that the score was unreadable and unplayable. It was inordinately complicated, with four or six staves, impossibly complex chords with six or more notes on a single stem, and horizontal rows of multiple flats and sharps. It was, he said, “a potpourri of musical notation without any meaning.” He would see a page of this pseudo-music for a few seconds, and then it would disappear suddenly, replaced by another, equally nonsensical page. These hallucinations were sometimes intrusive, and might cover a page he was trying to read or a letter he was trying to write.
Though Arthur has been unable to read real musical scores for some years, he wonders, as Marjorie did, whether his lifelong immersion in music and musical scores might have determined the form of his hallucinations.5
He wonders, too, whether his hallucinations might progress. For about a year before he began to see musical notation, Arthur saw something much simpler: a checkerboard pattern. Will his musical notation be followed by even more complex hallucinations, such as people, faces, or landscapes, as his eyesight declines?
There is clearly a wide array, a whole spectrum, of visual disturbances which can occur when vision is lost or compromised, and originally the term “Charles Bonnet syndrome” was reserved for those whose hallucinations were related to eye disease or other ocular problems. But an essentially similar array of disturbances can also occur when the damage lies not in the eye itself but higher up in the visual system, especially the cortical areas involved in visual perception—the occipital lobes and their projections into the temporal and parietal lobes of the brain—as seems to be the case with Zelda.
Zelda was a historian who came to see me in 2008. She told me how her world of strange visual phenomena had started at a theater six years earlier, when the beige curtain in front of the stage suddenly seemed to be covered in red roses—the roses were three-dimensional, thrusting out of the curtain. When she closed her eyes, she still saw the roses. This hallucination lasted for a few minutes and then vanished. She was perplexed and frightened by this, and she went to consult her ophthalmologist, but he found no impairment of vision and no pathological changes in either eye. She saw her internist and cardiologist, but they could not provide any plausible explanation for this episode—or the countless episodes that followed. Finally she had a PET scan of her brain, which showed reduced blood flow in her occipital and parietal lobes, presumably the cause, or at least a possible cause, of her hallucinations.
Zelda has both simple and complex visual hallucinations. The simple ones may appear when she is reading or writing or watching television. One of her physicians asked her to keep a journal of her visions over a three-week period, and in it, she recorded, “As I write this page, it is becoming more and more covered by a pale green and pink lattice.… The garage walls, covered in white cinderblock, continually mutate … coming to resemble bricks, or clapboard, or being covered with damask, or flowers of different colors.… On the upper part of the walls in the hallway, shapes of animals. They were formed by blue dots.”
More complex hallucinations—battlements, bridges, viaducts, apartment houses—are especially common when she is being driven in a car (she gave up driving herself after her initial attack, six years ago). Once when she and her husband were driving along a snowy road, she was startled to see brilliant green bushes, their leaves glittering with icicles, to either side of the road. Another day, she saw a rather shocking sight:
As we drove away from the beauty parlor, I saw what looked like a teenage boy on the front hood of our car, leaning on his arms with his feet up in the air. He stayed there for about five minutes. Even when we turned he stayed on the hood of the car. As we pulled into the restaurant parking lot, he ascended into the air, up against the building, and stayed there until I got out of the car.
At another point, she “saw” one of her great-granddaughters, who rose up, moved to the ceiling, and disappeared. She saw three “witchlike” figures, motionless and hideous, with huge hooked noses, protruding chins, and glaring eyes—these also vanished after a few seconds. Zelda said she had no idea that she had so many hallucinations until she starting keeping a journal; many of them, she thought, would otherwise have been forgotten.
She also spoke of many strange visual experiences which were not quite hallucinations in the sense of being totally invented or generated but seemed to be persistences, repetitions, distortions, or elaborations of visual perceptions. (Charles Lullin had a number of such perceptual disorders, and they are not uncommon in people with CBS.) Some of these were relatively simple; thus, when she looked at me on one occasion, my beard seemed to spread until it covered my entire face and head, and then resumed its proper appearance. Occasionally, looking in a mirror, she might see her own hair rising a foot above her head and have to check with her hand to make sure it was in its usual place.
Sometimes her perceptual changes were more disturbing, as when she encountered her mail carrier in the lobby of her apartment building: “As I looked at her, her nose grew until it was a grotesque figure on her face. After a few minutes, as we stood talking, her face came back to normal.”
Zelda would often see objects duplicated or multiplied, and this might create odd difficulties. “Making dinner and eating was quite difficult,” she said. “I kept seeing several of each piece of food when they didn’t exist. This lasted most of dinner.”6 Visual multiplication like this—polyopia—can take even more dramatic form. Once, in a restaurant, Zelda observed a man in a striped shirt paying at the cash register. As she watched, he split into six or seven identical copies of himself, all wearing striped shirts, all making the same gestures—then concertinaed back into a single person. At other times, her polyopia can be quite frightening or dangerous, as when, sitting in the passenger seat of her car, she saw the road ahead of her split into four identical roads. The car seemed to her to proceed up all four roads simultaneously.7
Seeing moving pictures even on television may lead to hallucinatory perseverations. Once, watching a television program that showed people descending from a plane, Zelda began to hallucinate minute replicas of the figures, which continued their descent off the screen and down the wooden cabinet of the television console.
Zelda has dozens of these hallucinations or misperceptions every day, and has had them, almost nonstop, for the past six years. And yet she has managed to maintain a very full life, both domestica
lly and professionally—keeping house, entertaining friends, going out with her husband, and completing a new book.
In 2009, one of Zelda’s doctors suggested that she take a medication called quetiapine, which can sometimes diminish the severity of hallucinations. To our amazement and especially hers, she became entirely free from hallucinations for more than two years.
In 2011, however, she had heart surgery, and then, on top of this, she broke a kneecap in a fall. Whether it was due to the anxiety and stress of these medical problems, the unpredictable nature of CBS, or the development of tolerance to her medication, she started to have some hallucinations again. Her hallucinations, though, have taken a somewhat more tolerable form. When she is in the car, she said, “I see things, but not people. I see planted fields, flowering, and many forms of medieval buildings. Frequently I see modern buildings change into more historic looking ones. Every experience brings something different.”
One of her new hallucinations, she said, “is very difficult to describe. It’s a performance! The curtain goes up and ‘performers’ dance out on the stage—but no people. I see black Hebrew letters dressed in ballet dresses of white. They dance to beautiful music, but I don’t know where it comes from. They move the upper parts of the letters like arms and dance on the lower parts so gracefully. They come onstage from right to left.”
While the hallucinations of CBS are usually described as pleasant, friendly, diverting, even inspiring, they may occasionally take on a very different character. This happened to Rosalie when a neighbor of hers in the nursing home, Spike, died. Spike was a whimsical, laughter-loving Irishman, and he and Rosalie, both in their nineties, had been close friends for years. “He knew all the old songs,” Rosalie remarked; they would sing these together and joke and chatter by the hour. When he died suddenly, Rosalie was devastated. She lost her appetite, withdrew from social activities, and spent more time alone in her room. Her hallucinations returned, but instead of the gaily dressed figures she had seen before, she saw five or six tall men standing around her bed, silent and motionless. They were always dressed in dark brown suits and wore dark hats that shadowed their faces. She could not “see” their eyes, but she felt that they were gazing at her—enigmatically, solemnly. She felt that her bed had become a deathbed and that these ominous figures were harbingers of her own death. They seemed overwhelmingly real to her, and although she knew that if she stretched out a hand it would pass right through them, she could not bring herself to do this.