Living with a Visionary | The New Yorker
Category: Mental Health and WellnessVia: thomas • last year • 4 comments
By: John Matthias (The New Yorker)
Just read this story in The New Yorker and thought that I would share it.
For more than fifty years, my wife and I shared a world. Then, as Diana's health declined, her hallucinations became her own reality.
By John Matthias
January 25, 2021 Illustration by Grace J. Kim
You would think it was a performance of some kind. When she wakes up, if she has slept at all, she tells me about the giants carrying trees and bushes on what she calls zip lines, which I am able to identify as telephone wires. Beneath the busy giants, she explains, there is a marching band playing familiar tunes by John Philip Sousa. She is not especially impressed by either of these things, and the various children playing games in the bedroom annoy her. "Out you go," she says to them. Then she describes the man with no legs who spent the night lying beside her in bed. He had been mumbling in pain, but nobody would come to help him. She remembers her own pain, too. "I could hardly move," she says.
And she can hardly move now. Her legs are stiff, her back is cracking as I lift her out of bed. Although still clearly in pain, she gives me a sly look and gestures with her chin toward the flowerpot in the hallway. "The Flowery Man," she says. "He's very nice."
She is fully articulate, in many ways her familiar self. She asks me if I saw the opera. I'm not sure which opera she means; we've seen many over the fifty years that we've been married. She means the one last night in our back yard. She describes it in detail—the stage set, the costumes, the "really amazing" lighting, the beautiful voices. I ask her what opera was performed. Now I get another look, not a sly one but a suspicious one.
"You don't believe me, do you?"
I say that it's not a matter of belief but of perception. I can't see what she sees. She tells me that this is a great pity. I miss so much of life. I used to have something of an imagination, but I've evidently lost it. Maybe she should start spending time with someone else. Also, she knows about my girlfriend. The one in the red jacket. There is no girlfriend, but there is a red jacket hanging over the back of her walker. Suddenly, she forgets the girlfriend and remembers the opera. "Oh," she says. "It was 'La Traviata,' and we went together with Anna Netrebko before she sang."
Now I have my own brief vision. Diana is only twenty-one, I am twenty-five. We have just arrived in South Bend, where I am teaching English at Notre Dame. A friend wrote about us in those days as having appeared to him like two fawns in the grove of our local Arcadia. Diana wore the clothes she had brought from England, including her miniskirt, and people in cars would honk their horns and stare. In London, where we had met, it had been the middle of the nineteen-sixties; at our Midwestern college, it was more like the fifties. A former student told me that when I held classes at home, for a change of scene, he and his classmates took bets on who would be lucky enough to talk to her.
I see her walking in from the kitchen with tea and her homemade scones. College boys—only boys were admitted back then—lift china cups balanced on wafer-thin saucers. Some have never eaten a crumbly scone or sipped tea out of such a delicate cup. Diana is often told she looks like Julie Christie, and my students all want to be Omar Sharif, Christie's co-star in "Doctor Zhivago." Some write poems inspired by Lara, Zhivago's muse. Diana smiles at them, greeting those whose names she remembers. Hello, Vince. Hi there, Richard. She dazzles them. She dazzles me.
Art was her passion. Later, she earned an art-history degree and became the curator of education at our university's museum. She devised a program of what she called "curriculum-structured tours," ambitiously proposing to organize museum tours that would be relevant to any class. This she did—chemistry students learned about the properties of seventeenth-century paint, psychology majors studied portraits for signs of their subjects' mental health—and eventually she exported her innovations to other college campuses. Because of her, students began looking seriously at paintings and sculptures. They followed her hand, pointing out some luminous detail; they listened to the music of her voice, her British accent slowly becoming Americanized over the decades.
Diana trained a new set of gallery interns each year, teaching them about all there was to see and find in the museum's art. She loved them dearly, and they loved her back. She had been conducting tours for thirty years when a former intern, Maria, came by the house—ostensibly on an errand to collect some of Diana's library books. Really, she wanted to talk to me. She explained that Diana had started seeing things. The first time Maria noticed it, Diana was showing a class of French students a reduction of Charles Louis-Lucien Muller's "The Roll Call of the Last Victims of the Reign of Terror," from 1860. It's a very busy painting, with dozens of figures waiting to be transported to the guillotine. Diana told the students that at the center of "The Roll Call" was a man named General Marius. But General Marius wasn't there; he was around the corner, in a painting called "Marius and the Gaul," about which Diana had written her thesis, many years before. She was speaking in French, and at first Maria thought that Diana had got tangled up in the language. Surely it was her words, not her reality, that had become so confused.
Not too long after Maria's visit, Diana returned home one day looking tired and depressed. She sat down on the sofa next to me, took my hand, and said, "The students tell me that I'm seeing things that aren't there." I admitted that Maria had already told me about this. By then, Diana had begun treatment for Parkinson's disease, taking a standard cocktail of medicines in small amounts: levodopa combined with carbidopa, in a drug called Sinemet. She had received the diagnosis only because her doctor couldn't otherwise explain her onset of general weakness. Aside from fatigue, she had virtually no symptoms, and her behavior had been absolutely normal while taking Sinemet. Now she confessed that she was seeing things at home as well. She pointed at a wadded-up sweater on a chair across the room. "That's not really a cat, is it?"
I asked her what else she saw. "Little people," she explained, "like Gulliver's Lilliputians." Objects had been changing shape—"morphing" was her word—for some time, but recently things had begun appearing out of nowhere. We saw a specialist in Chicago, who, like the neurologists Eric Ahlskog and Oliver Sacks, called these "illusions." We suspected that the hallucinations were a side effect of Sinemet, and, after consulting many books and articles, Diana and I began to titrate her medication ourselves. Most Parkinson's patients end up doing this, experimenting with how much they take of each medicine and at what time. There were new delivery systems for the basic mix of levodopa and carbidopa, and we tried them all, along with a number of adjuvant therapies.
At first, Diana could identify her illusions as such, and sometimes even dismiss them. ("Scat!" got rid of the cat.) The things she saw were not always frightening. Many of them seemed inspired by her work in the visual arts. Visiting a neighbor, Diana enthusiastically described a painting on a blank wall where, we later learned, one had been hanging until several days before. Her knowledge of eighteenth-century art may in part explain her delight in seeing topiary figures cut into very large trees, where I saw nothing but leaves. Some of the visions she told me about were clearly breathtaking. "If only you could see this," she said.
I couldn't see what she saw, but I could see her. She was somehow growing more beautiful—or beautiful in a new way. Everyone noticed this. Never one to use much makeup or even visit a hair stylist, she would wash her face in the morning, put up her hair or let it hang at shoulder length, and come downstairs to start her day. Her striking good looks belied the condition that would bring her down. It was Julie Christie all over again, but not from "Doctor Zhivago"; she was the aging Christie of Sarah Polley's movie "Away from Her." Adapted from Alice Munro's story "The Bear Came Over the Mountain," the film is about a woman with Alzheimer's disease. Her decline is slow, until it is suddenly fast. Diana watched the movie without anxiety. She had not, so far, suffered any significant memory loss. When I reminded her that decades earlier my students had compared her to the actress, she laughed. During a trip to Chicago to see her doctor, we had been approached by a man on the street, who said, "I just have to tell you how beautiful you are. Forgive me for intruding on your day." We got into a taxi, and Diana growled to me, "I sure don't feel very beautiful."
For two or three years, Diana's condition was manageable through modifications in her medications, and through her ability to recognize the hallucinations for what they were. At the art gallery, she avoided confusion by writing out scripts for her tours. She managed to retire when she was scheduled to, not before. It was shortly afterward that her hallucinations began to increase in frequency and intensity. She insisted that the topiary trees were the work of giants, and she described the giants' elaborate uniforms. Plays and operas were staged in our back yard, spontaneous parades appeared in the streets.
It became harder and harder for her to understand that her visions were not real. She sometimes asked me why these events were not written about in the paper or covered in the news on television. In the house, nothing held still: objects danced on the mantel, the ideograms on our hanging scroll of Chinese calligraphy flew around like butterflies. At the beginning, many of these transformations had given her pleasure. More and more, however, they annoyed and alarmed her. Three women were "hanging" in her closet and refused to leave. The Flowery Man roamed the house. There were rude people who masturbated into a dresser drawer and had sex on the living-room sofa.
When Diana could no longer shake these things off, she began to surrender to them. She slowly ceased to see them as hallucinations. I had read that it did not help to deny the reality of these visions, so I stopped doing that. I began trying to deal with them as if I could see what she did. Friends were encouraged to make the same allowances. For a while this helped. A fifth person at a dinner for four did not pose a big problem once you got used to this kind of thing. I informed the members of Diana's reading group that she might refer to people who weren't there, and they, too, made the adjustment.
One day, she shouted for my help. A housepainter in white overalls, she told me, was painting over the portrait of one of our daughters that hung on the living-room wall. The man didn't speak; none of Diana's human apparitions ever spoke, though their mouths would move without sound, and sometimes they would respond to stern rebukes. I could say things like "I'll see the painter to the door." But often the damage had been done. In the case of our daughter's portrait, it continued to exist, for Diana, partially erased. She referred to the painting as "the half-faced child."
Some medications work for Parkinson's patients with hallucinations, but for Diana they all seemed to make things worse. In November of 2019, a new kind of confusion about both space and time took hold. One morning, I found her with her suitcase packed, ready to travel. When I asked where she was going, she wasn't sure. "Away," she said. She wasn't sure why. But, she insisted, "we certainly can't stay any longer in this person's house, in a place where we don't even speak the language."
Christmas approaches, and I return to the present tense. Everything that happens after this feels like it's still happening now. Slowly, through the winter, Diana's benign hallucinations become terrible and threatening presences. (Meanwhile, in China, a new and deadly virus is unleashed on the world.) Diana loses her ability to sleep, a common and debilitating feature of Parkinson's. Because she is either sleepless or tormented by nightmares, I am also unable to sleep. For a while, I am able to soothe her and offer comfort, but often her dreams continue unabated when she wakes up. Eventually, I am simply incorporated into them. When I ask her if she is awake, she says she does not know.
Her eating also becomes a problem, and I know that she is not getting proper nutrition. I use the blender again and again, counting calories, mixing in anything containing protein. She is getting very thin. I sleep only when she sleeps and eat a quick sandwich as I cook for her. She looks at me one morning and says, "Who are you? What are you doing here?"
Because Diana hides things, then promptly forgets where they are, I often find myself searching for her medical-insurance cards, her driver's license, some kind of I.D. with her picture on it. She sends me on a wild-goose chase all over the house. This drawer. That closet. But I can never find what we need. The hallucinated people begin to take on more life than the living. And they have names. Not generic and rather charming names like the Flowery Man but monosyllabic American names like Bob, Pete, Dick, George, Jack. No one seems to have a surname. "Jack who?" I ask her. She gives me a straight look and says, "Jack the Ripper." She keeps asking, "Who's in charge?" I wish I knew.
In March, as the pandemic descends on the Midwest, I try to explain why she cannot go out or see friends. She doesn't understand. I don't dare leave her alone, even for a short trip to the grocery store. She begins going outside when my back is turned, and she frightens some of the neighbors with things she claims to see. I make rules. No phoning friends after 10 P.M. No going outdoors after bed or going downstairs for breakfast in the middle of the night. I finally move to a bed in a separate room.
With the country in lockdown, I can no longer reach Diana's neurologist in Chicago. Local doctors help us refill some of her medications over the telephone, but have nothing to offer that might help the dementia that is now clearly part of the picture. My most recent reading makes me wonder whether she might have not Parkinson's but something called Lewy body dementia, which produces vivid hallucinations. Its terrifying symptoms are believed to have led to the suicide of the actor Robin Williams. Diana talks about "jumping in the river." (The St. Joseph River is only a few hundred yards from our front door.) Neighbors offer to do some shopping for us, but as the pandemic gets worse I hesitate to ask them for more help. When I finally make contact with two or three "senior helper" organizations, I am told that all their programs are on hold. I can do nothing but try to continue on my own. I begin taking pills myself—sedatives washed down with glasses of Merlot. We are living on cans of beans and prescription drugs.
There are still moments when Diana is very happy. Sometimes, she seems to be in a state of bliss. She stands at the open doorway and gazes into the sky. I stand behind her. "Look!" she says. "Why can't you see?" I tell her that I'm trying, but maybe need some help. She becomes angry and shouts, "The gods! The gods!"
One day, I find Diana clutching a balled-up blanket to her breast. "What have you got?" I ask her. "A dead baby," she says. I have never seen such terror in her eyes. I have never seen it in anybody's eyes.
At some point—a day later, two days later—police arrive at the door. In the street, an ambulance is flashing its colored lights. The three policemen at the door have masks on, and I'm initially frightened by this, because I don't know that many people are now wearing them. Someone has called the police about a lady who lives here who may need to go to the hospital. I stand there gazing stupidly at the policemen. They ask if they can talk to the lady. I tell them she's my wife. Diana is on the sofa, more or less catatonic.
When I step onto the front porch, I notice some of our neighbors watching from their yards. I am asked questions about Diana and who has been looking after her. I begin to fear that I'm about to be arrested. Someone suggests that maybe it would be good for her to be completely checked out in the E.R., and possibly admitted for a day or so. The next thing I know, two of the ambulance men are bringing a stretcher up to the porch. One of them asks if he can talk to my wife. Finally, I'm able to say something. I say no. They are immediately suspicious. To my amazement, I hear Diana saying, "I'll talk to them. It's O.K." They ask her what's wrong. She describes a few of her hallucinations. She's worried about what's happened to the dead baby. What dead baby? I try to intervene, but already she's explaining that she had the dead baby in her arms just a moment ago. Perhaps it has rolled away. She gets down on one knee and reaches under the sofa. "Oh, good," she says, reappearing with the blanket. "Here it is."
While the medics are conferring with one another, Diana suddenly says, "I think I should go to the hospital." The ambulance guys seem delighted by this. Diana is put on the stretcher, and the ambulance disappears. No one asks what I think should be done. No one asks me to come along. In the confusion, the blanket has been left on the front porch. When everyone is gone, I take it inside.
That night, Diana is admitted to the hospital for observation. I won't be able to visit her, because of COVID restrictions. I am frantic: they'll get all the Parkinson's meds mixed up, they don't know her schedule. What will happen if she misses a dose of Sinemet?
What transpires in the next days and weeks is sometimes vividly clear and sometimes swirling in a surrealistic fog. At some point, it is decided that I, too, should be examined in the hospital. In the E.R., I am told that I am suffering from exhaustion, malnutrition, and dehydration. I end up on the same floor as Diana. By the time I arrive, she has told everyone that she is a movie director working on a documentary about art therapy in hospitals. From my bed, I explain to her doctors, who are different from my own, as much of her medical history as I can. I am allowed to talk to Diana only by phone.
Social workers keep appearing with documents for me to sign. My daughter Laura and I have agreed, in theory, that eventually Diana will have to move into an assisted-living community. A new facility for patients with dementia has recently been built near Laura's house, in Worthington, Ohio. Laura wants to take Diana there, and I have to admit that I am no longer able to look after her. I am barely able to look after myself. I sign the papers giving Laura power of attorney for Diana and me. There are decisions to be made, bills to be paid, and I am flat on my back in the hospital.
COVID is tearing through the country. The hospital is filling up with patients, my bed is in demand. My doctors ask if I want to be sent home or to spend three days in the psychiatric hospital associated with the general hospital where I am being treated. They talk about rest, recovery.
Where I end up is not a health spa but more like a boot camp. Before I am moved, all my possessions are taken away. No shoelaces, no belt. At the new facility, I am given a handful of large and small pills every three hours. At night, all patients are on suicide watch. I barely sleep. While I am in the psych ward, Diana is driven in a long-distance ambulance to the care facility in Ohio, where, after a fourteen-day quarantine, she will now live. How Diana deals with this news, what she understands and doesn't understand, I do not know. She still thinks she is directing a documentary film. I am not allowed to see her before she leaves.
In the second psych ward where I find myself remanded, I am the oldest patient by far. The program of endless group therapies seems designed for adolescents. At seventy-nine, I am too weak to do many of the things demanded of me. When I do not immediately respond to the pills I'm given, there is talk of electroconvulsive therapy. I object, and an online hearing is convened, where a judge concludes that, although I must stay beyond the hospital's mandatory seventy-two-hour observation period, I do not have to undergo shock therapy.
Meanwhile, I am terrified of COVID. Locked out of our rooms for most of the day, we are all in one another's way, and patients share a common bathroom. One day, I am required to cut off my beard. Looking at myself in the mirror, I discover the corners of my mouth locked in a permanent grimace. The beard has hidden this from me: I can't smile.
I try to explain to the staff that there has been some kind of mistake, that I need to rescue my wife, who has been taken to Ohio. The things I say to the nurses and therapists must sound mad. When I am finally allowed to see the chief psychiatrist, I hear the desperation in my voice. I watch the unbelieving faces of everyone around me, and wonder how often Diana saw the same incredulity in my own face.
Somehow, our family lawyer gets in touch with a woman named Mary, a registered nurse and "personal health-care advocate," who is the one to finally secure my release from the psychiatric facility. I am asked to sign some papers that I haven't read, and then I am free. On the way home in an ambulance, driving back the same way Diana came, I consider asking the attendants riding alongside me if they have heard of the Flowery Man, the topiary trees, the little people—any of Diana's hallucinated cast of characters. For years I have tried as hard as I could to see these things, to share Diana's view of the passing world. In her absence, returning to the home where I must now begin to live by myself, I long all the more to understand the reality that she inhabits.
When COVID insinuated itself into the facility in Worthington, Ohio, in November, I had been at home for five months. For a couple of weeks, I had managed to communicate with Diana through screens. This confused her, though, so we started using the telephone instead. The last time I saw her face was on Zoom. She told me that she had something beginning with the letter "C." Then she suddenly smiled her wonderful smile. "What a sweet little girl," she said, following a hallucination with a sharp turn of her head.
Diana almost survived COVID. After testing positive, she spent several nights at the hospital, but was sent back to her facility with a normal temperature and a negative test result. For a few days, I was able to imagine seeing her again, even touching her. I had it all figured out. I would be among the first in line to be vaccinated, among the first to embrace a loved one who had been unreachable for so long. I didn't care how many hallucinated people came along, as long as Diana was around to see them.
Then her blood-oxygen level dropped. She was not likely to live through the night. Laura put the phone to Diana's ear, and I read the first poem I ever wrote for her—about waking together in a small Left Bank hotel in Paris before we were married. Finally, I started reading from a book of poetry I had written about her struggle. The dedicatory poem is about the Greek goddess Artemis, known by the Romans as Diana. Its final lines return to Diana the mortal, my wife:
If she could change, she
Might be like the woman called by her Roman name
Reading in a book beside the fire in my own house.
She has come down all these years with me
I couldn't continue. "You're doing great, Dad," my daughter said, "but she wants to know about the Flowery Man." So I told her everything I knew. ♦
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