Emily in the Ocean
by Kristin Collier
On a snowy evening in December, Emily and I eat together in the dining room of her senior assisted living facility. It’s cold outside, the first significant drop in a mild Minneapolis winter, and the room is set at 76 degrees.
“Do you see him?” Emily asks me.
I follow her gaze across the room. “The men at the table over there?”
“No, no, behind them.”
“I don’t think so.”
“He’s beautiful. So beautiful. In swim trunks diving off that giant board into the big pool underneath. Now he’s doing a back dive.” The man flips and climbs, she says, before flipping again.
I look around the dining room. Everyone wears sweaters and scarves, despite the warm room. They sit in groups of four or six, eating and sipping water—and occasionally wine-- as they catch up on their grandkids and the politics of the senior home. No one seems aware that an Olympic diver is practicing in the corner.
This is the second time I have met with Emily, but the first time that we have been alone. I have never worked in elder care before, though I have spent time with the fragile and sick. After my father’s many unsuccessful surgeries for stage IV lung cancer and the chemo that followed, I pleaded with him to take just another bite of food, another sip of milk. Before I began my work with Emily, I met with her daughter to discuss how I would assist her: I would help her keep in contact with old friends through cards and letters, clean her apartment, take her for walks, and record her hallucinations in a journal. Now, at dinner, I worry that I will offer to help at the wrong times. I don’t know when to scoot Emily closer to the table, when to offer to grab the butter for her, when to cut her food into smaller pieces, or when to give her time to eat in silence.
Emily’s spine collapsed years ago, so when she stands—as she did walking in-- she folds over herself like pants on a hanger. Seated, she hunches close to the table, her face just above the plate when she eats. Because her illness, Lewy Body with Dementia, has left her face slack, her left cheek droops. Yet, at seventy-six years old, she still looks beautiful, and when she smiles, she still looks young. Tonight she wears black stretch pants, slip-on leather shoes, and a hot pink zip-up sweatshirt. Her hair is silver at the roots and slightly blonde at the middle and ends, and she styles it wild and curly. She has blue eyes and rimless glasses, which are not visible when she walks, but I can see at the table as she tilts her head toward me.
“He has a very nice figure,” Emily says of the man on the diving board.
“What do you think he’s doing here?” The men in the corner return our stares.
“I don’t know. It seems like he’s showing off.”
Eventually, the chiseled man disappears, and I am unsure how the hallucination ends—just as I am unsure how it begins. Weeks later I will sense that Emily has filled in the missing narrative gaps that these visions create. Throughout the first night when I express wonder at what she sees, she always has an explanation as to why this thing has occurred in this moment. The fluffy, white rabbits that run by our feet smell gravy and are begging for scraps. The little girls who dance in pink tutus are preparing for their upcoming performance, and they want Emily to watch their careful and balanced spins.
But I have yet to hear the details of a vision’s conclusion. Perhaps the beautiful and naked man wrapped himself in a blue towel, slipped his feet into flip-flops, and closed the pool cover for the night. Or perhaps mid-triple back flip he just ceased to exist, and where there was once expansive turquoise of the tiled pool floor and a body slicing through the water, there is now only lattice window and black night.
Back in her second floor apartment, while Emily uses the bathroom, I wander around her living room, picking up framed pictures and artwork. Emily worked as an art teacher and then professional artist for fifty years, and her collection of paintings is stacked against the island in her kitchen and hanging on every wall of her living room. In a series of framed watercolors in her studio, silver ribbon threads icy snow banks; blue ribbon loops through green fields; and a brown bow strings together the trees of autumn. The river Emily paints moves through seasons and years-- trees blooming and thinning, the river freezing and thawing.
In the artist studio to the right of the living room are more paintings. Some of root vegetables, a country farmer’s market, and her friend’s church which was printed on postcards to sell at fundraisers. There is a sketchbook of half-completed work; stacks of paper everywhere; the smell of chemicals, paint, and wood.
Emily meets me at the door of her studio, pointing to a picture of the woods in autumn. “Do you see the extra shading around the edges?” The painting is on the floor, so from her stooped position, she has a clear view of the work.
“I’m not sure.” I don’t know what I’m looking for or if what she sees is really there. “Maybe.”
“He’s added that in there, thinking I won’t notice. He does that to all my paintings before putting them back. But I see what he’s doing.”
And so I meet the art thief, a man who appears in many of Emily’s worst hallucinations. Sometimes he steals her paintings to put them on display in giant circus-like tents outside the window. Or sometimes, more insidiously, he paints a layer over her work, claiming her ideas, angles, and images as his own. He usually chooses dark colors to destroy or manipulate her work. Even though she always catches him, she remains unable to exorcise him from her visions. I learn later that he does not have a name, and that despite the best efforts of her daughters, he will not leave her alone.
In a large photograph Emily keeps in her kitchen, she smiles from behind giant plastic 80s-style frames. She must have been in her 40s at the time, only a few years before the marriage to her daughters’ father ended. Though the picture is in monochrome browns, you can see that she has makeup on. Her is thicker, and she wears a plaid collar shirt with a turtleneck underneath. On her shoulder leaning forward into the camera lens is her pet raccoon, Silly.
“Raccoons make good pets once you train them,” Emily explains to me in an after-dinner visit to her apartment. She found Silly outside when he was a cub after his mother had been hit by a car. Against the advice of the veterinarian, Emily cared for him, feeding him puppy formula and eventually training him to use the litter box. For the year that he was alive, he was playful, jumping into the hamper to bury himself beneath piles of clothes and learning tricks like their dogs. Her daughters were particularly fond of him; they were the only children at school with such an interesting pet.
At night Silly scratched to go outside, so Emily allowed him to wander in the yard and woods behind her house. One night she heard him cry out. She searched for him in the dark with a flashlight and then again in the morning, but she never found him, and he never came home.
There are raccoons everywhere in her apartment, pictures of Silly posing with each of the children, stone raccoons keeping watch in the doorway, and porcelain raccoons popping up on shelves in her living room.
Later, I tell a friend about Emily’s raccoon, and they remind me that this is what it means to live with illness-- one day you lose a piece of yourself you love very much. You yearn for it, dream of it, and though you never stop searching, it does not return.
Emily speaks of her old life, the life she had before she was diagnosed with LBD, with clarity, remembering every trip to another country—Nepal, Turkey, Spain--every vacation, and every tradition with her daughters and their children. She describes to me what it was like to watch the sunset with her daughters on a long hike up the lower half of Mt. Everest, and how she felt standing on Pont Sant’Angelo in Rome when she studied abroad in college, gazing at the river as her fellow students played guitar next to her. “Standing on that bridge was one of my favorite moments of travel,” she says, “I was all alone and far away and young. Listening to the sounds of acoustic guitar from people I’d never met before.”
She also tells me that when her daughters were young she hid their Christmas presents in the woods behind her house. Next to each present Emily had placed a single candle. She sent her bundled-up children into the night with flashlights to search beneath the snow-covered branches for their treasures.
For a moment we are together in her memory, the candles blinking like icy glow worms, and then we are elsewhere. Emily’s living room becomes the stage for a great performance, a silent black and white movie, stretching the width of the living room. Guests shuffle past us, perching on her sofa, wicker chair, and dining room table until the room is full. I ask Emily what she sees, and she says that I am interrupting the performance. She pushes me to her room, commanding our movements in soft whispers.
“Did you see all of that? I wish they would have asked me before using my space.” She shuts the door.
“No, but I believe that it was there for you.”
“The movie really was beautiful.”
It was a romance, like many of the silent movies she sees over the months we work together. She is attracted to love stories, despite a recent break-up with a man she had loved a great deal, a pastor who had been her best friend, who she had asked to leave her when they both understood the full weight of her illness. They did research, saw into her future, and then with her blessing, he left.
He is with his new girlfriend in Arizona on this particular night, and Emily reminds me that “your heart can break at any age.”
A few weeks later, in early January, we sit on her couch together and listen to Garrison Keillor read Lord Byron’s “She Walks in Beauty” on the Writer’s Almanac. “The smiles that win, the tint that glow, / But tell of days in goodness spent, / A mind at peace with all below, / A heart whose love is innocent!”
Afterward we are silent. I glance over, sure she has fallen asleep since her eyes have been closed for the program. She looks up at me and says, “That’s so lovely.”
A white bird flies into the room, swooping and turning before perching on her cabinets in the kitchen. She watches it as it moves throughout the room, and because I cannot see the white bird, I watch her.
Emily often knows when she is hallucinating. A clue, she explains in late January, is when the people she speaks with do not speak back. But her knowledge that what she sees is made from her brain, a symptom of a strong and terrible illness, does not keep her from believing in the visions. That is to say, she is of two worlds, belief and disbelief, and participates in them both fully.
She tells me on several occasions that she shares her bed each night with a homeless couple who stumbles in to escape the cold. Sometimes they “fornicate” on her bed without her permission, but mostly they just show up at bedtime to bury themselves in her feather blankets and clean sheets.
“I think you need to kick them out. You’re too nice. It’s your bed, and they can sleep on the pullout couch,” I tell her one day after she explains that the night before they hogged the whole bed, forcing her to curl up in a tiny corner. Our conversation moves between her worlds, both of us aware that the couple does and does not exist at the same time.
“I don’t know. They have nowhere to go now, and they aren’t so bad.”
I wonder then where hallucinations meet the contours of old age, which—even for those with the most robust social lives such as Emily—involves a lot of time alone. Her daughters, grandchildren, and friends visit often, but the time between is filled with small children dancing, dogs playing at her feet, naked men stretching or diving, a homeless couple stopping by to snuggle at night, and a cast of other characters who seem to show up on schedule.
Emily wants to know what about her illness makes me curious, so I ask her if her hallucinations scare her.
“Not really, and sometimes they’re delightful.”
Over stir-fry one night, the side of the dining hall transforms into a jungle. Thick wet leaves hang from the ceiling. Emily has just asked me if I am married, and though she acknowledges that at thirty I still have lots of time, she also thinks perhaps I should start to “get a move on it.”
“Do you see that man, the tall one with the black suit on?” Emily sees men often, always good looking, often undressed. We smile at her good fortune, that her hallucinations should be so blessed.
“I can’t. I’m sorry. Tell me about him.”
“Oh he is very good-looking. Maybe thirty or so. He keeps throwing kids up in the air and then catching them, so I can see he is very good with children.”
I turn to follow her gaze. This is our pact. I will always try to see what she sees, and when I inevitably cannot, she will describe it in detail. She will have her vision, and I will have her words.
“Could be a good husband for you.”
A few minutes later she changes her mind. The man has started picking out the foliage, sticking it at odd angles into his hair, so that he wears a porcupine crown of flowers and sticks, “Far too unstable” for me, she has decided.
A herd of small animals gather at her feet, and she bends to whisper to them. I finish my vegetables, look into the jungle, imagine the handsome king with the messy crown.
A month and a half after I meet Emily, she moves to a different section of the facility known as the memory suite and officially called “The Marsh.” Complete with buzzing doors only accessible by a code, this suite is intended for those with severe dementia. These patients might wander off on their own and generally need more assistance. Emily is distressed about changing apartments, losing her studio, and having to decide what to fit into the tiny kitchenette, living room, and bedroom. Along with her studio and deck, she loses her washer and dryer, her oven, and the confidence that she can take care of herself. It is for her own safety, she knows, but it is a loss all the same.
The memory suite has its own dining room, which serves one of the course options from the dining room we used to frequent together. Many of the tenants eat in their rooms, so The Marsh crowd each night is composed of the same group of people, usually sitting in the same order around one of two tables in the room.
On my first night eating with Emily in the new dining hall, I sit next to Ruth*, who is vegan, who always arrives early and is served first. “Where’s my brother?” she asks as soon as I sit down.
I don’t know, and Gerald who has bright blue eyes and two seemingly ineffectual hearing aids screams out, “What does she want to know now?”
Sue, who wears a thick yellow sweater, gold bangles, a heavy beaded necklace and lipstick, wants to know what Gerald needs, and the woman next to Sue--who refuses to tell me her name no matter how many times I show up and express interest says, “Here we go now. This is when the fun starts!”
I learn later that she says this each time confusion erupts at the table. When mistakes of memory and hearing create tension, she has fun. At the end of my first dinner in The Marsh, I start calling her Turtle.
I spend my first hour at the table managing the conversation between Ruth, Sue, Gerald, and Turtle. If I don’t answer Ruth quickly enough she is annoyed. Sue blames her poor hearing but keeps asking until I am available to answer. Turtle tries to start conflict and then watches it spiral (“Look at Sue flirting with Gerald. Boy, that’s precious”). And Gerald just laughs. He loves being at dinner, especially when he realizes I will drink coffee with him after we are finished eating.
At first I am anxious over Emily’s role in the new community. The people around the table cannot grasp her illness since it it new to them each time they see her, and at every dinner, they have a new idea for her back or neck: a brace, a pillow, a surgery, a thing someone’s cousin’s cousin did for his back that seemed to work. Emily and her family have fully researched all her options, and she knows her collapsed spine will never straighten, but she contemplates their ideas with care, offering to try their suggestions if the table can put her in contact with the right friend or specialist.
Most of the table—with the exception of Turtle—seem delighted to be at dinner. Because Sue cannot remember me, we have the same conversation every time I come, and at the conclusion she tells me, “I’m happy you’re here tonight. We’re going to have fun.” Gerald agrees, and Turtle rolls her eyes.
Despite their delight in one another, there seems to be a collective desire to recognize the ways in which someone else is worse off. So when Sue has a bruise on her face from falling, the others acknowledge this situation with both worry and relief. There is safety in someone else’s struggle because it normalizes their own challenges. In this way, Emily is confusing to the table. She is funny, sarcastic, knows to ask the nurses about current events, and remembers everyone’s names. But she can hardly finish her meal, her back and weak arms making it difficult for her to lift the spoon or fork to her mouth.
One night I arrive to dinner after Emily has been escorted downstairs ahead of me. There are no seats next to her, so I sit across from her, wedged between Ruth and Turtle. The first course is soup. Emily uses the smaller of the two spoons beside her bowl because the soup spoon is too heavy. Normally I help her locate the spoon on the table because her poor vision results in her seeing double. Two spoons, two heaps of potatoes, two Ruths, two mes. But across the table I am stuck watching her slowly feel the surface of the table until she finds it.
She tries to raise the soup-laden spoon to her mouth once, but it’s too heavy. She moves her face closer to the bowl so that her mouth is nearly at the edge. Emily eats like this often, her face just on the other side of the plate or bowl so that she is only required to balance the food for a moment before it reaches her mouth. She tries again and again and cannot hold the spoon long enough to bring it to her face.
“Poor thing,” Ruth says to me. She scoops a heavy spoon of beets into the bowl of her potatoes and mashes them together. “I feel sorry for her.” Ruth adds broccoli into the bowl, stirs it, but does not eat it. I am unsure of what to say to honor Ruth’s concern but also support Emily, show that she does not need to be pitied and that she is doing fine. My silence prompts Ruth to tell me I am a rude girl.
Emily finishes every single dish that night, but I am unsure if she enjoys any of it. Her favorite course of dinner is dessert, and she also orders ice cream even though it is nearly impossible for her to eat, even when I cut it up for her and request that it be warmed in the microwave. Tonight, Emily spills ice cream on her lap four different times. I quickly replace each ruined napkin with another. She dips her hands in the vanilla mess, once dips her nose, and by the end has ice cream sprinkled on the ends of her hair.
By the time she is done, everyone but Ruth has left. Gerald, who normally stays late, left after only one bite. He stacked his food on his walker when he found the chicken was cold and dropped it off at the cook’s station on his way out. Turtle left without eating, and Ruth continued to mash her vegetables even when Emily and I left, and she was all alone.
On the way back to Emily’s room, we walk by a white puppy, a woman holding a heavy vase of flowers near the wall, and a few ballerinas, spinning and leaping.
I hesitate to call Emily’s hallucinations poetic because that seems a luxury of the able-bodied, whimsical, and young. The luxury of one who can comfortably eat soup, see clearly, walk upright, and who can speak of the future without dread. Yet, there is poetry in the bird that is trapped in Emily’s oven. As it flaps its wings, the sound echoes around us. So, too, is there poetry in the ghostly figure that pours giant bags of white powder around the edges of living room. When the wind picks up, it swirls around us, a snowstorm of flour and sugar.
Certainly Emily’s hallucinations are imaginative, dissociative, disruptive, and beautiful. Sometimes we work together to make meaning in their collisions and other times in their thematic threads. We find fear of loss, a love of nature, interest in art and performance, and an enormous sense of humor. The hallucinations can be warning, parable, nightmare, love letter, and poem all at once.
I think of Emily as I read Federico Garcia Lorca’s poems. His poetry is bright and messy and visceral, changes shape quickly and without warning. In “1910 (Interlude)” he writes:
My eyes in 1910
saw the white wall where girls urinated,
the bull’s muzzle, the poisonous mushroom,
and a meaningless moon in the corners
that lit up pieces of dry lemon under the hard black bottles.
Within one stanza, you see a bathroom, cow’s nose, mushroom, moon, and bit of fruit underneath a bottle. This is what it feels like to be with Emily—to be both with her on the couch but to also be in a forest, to meet a man wearing stovepipe pants and a young child who likes to pee in coffee cans.
The average life expectancy of someone diagnosed with LBD is five to eight years from the onset of symptoms, which can be a difficult timeline to narrow down. Emily was officially diagnosed in the winter of 2014, though she spent the year before trying to nail down the illness that was disrupting her sleep and slowly crumbling her spine. Emily knows that in three to five years the hallucinations will slowly take over her mind, like an eager wave that licks at the beach each year, slowly eroding the shoreline. Eventually, she will be submerged in a vast and alien ocean. She may see silver jellyfish or neon sea anemone, but she will see them all alone.
Emily is wary of complaining, so she doesn’t. When she spills an entire dinner on her lap or when she is forced to rock back and forth in her chair to gain the momentum to stand, she does not comment. Even when the art thief steals an entire collection of her favorite paintings and sells them off in his name, she remains grateful for her life.
She is privileged, attended college in a decade when few women did, visited countries across the world, owned her own home with land behind it, and now is able to afford a beautiful apartment in an upscale facility to be sick in. She acknowledges all of this. But she is losing her mind, and she is dying, and she is afraid all the same.
In late February I sit on Emily’s worn couch, and she on the leather recliner across from me, as we discuss our plans for the day. Because it is exhausting to hold her chest and head up, she keeps her knees bent and heels tucked in close to her body. Curled up into a tiny comma, she looks like a teenage girl.
Emily has just returned from a pedicure; her toes are the color of blush. Earlier today, the art thief informed her that he will be vacationing for a few weeks and will not be around to practice his paintings on her work. Emily is worried that she might miss him. “He is tall and strong, with blonde and very curly hair. He has blue eyes. Like a Viking,” she tells me. On the floor before her, hundreds of large white and black worms nuzzle into the carpet. She stops to pick one up before asking, “Where should we walk to today?”
We will go to a bakery across the street from her building, no more than a five-minute walk. I kneel before Emily to help with her shoes. I hold her foot and feel the smallness of her heel, remembering the way my father’s feet felt three months after he started chemotherapy and two months before he died. The winter in which he was sick, his body was all toothpicks and paper, and I was scared to touch him.
After her shoes are on, I guide her thin arms through her loose winter coat. Bend before her again to zip; place a cane in one hand; slip my own hand into her free one. To love someone means to love their body. I remember this when I clean her hands of food or wipe away her saliva which has accidentally dripped on me.
Outside, winter snow has disappeared into cold sidewalk. We finish the walk, but it is not easy. First we navigate four curbs and a wait at the bakery. Emily walks slowly, and because she cannot see, I constantly redirect her with a gentle word and pull of my hand. People stare at us as we walk. Me bent next to her so that she can hear me. She occasionally stopping to whisper to the dogs that have followed us.
At home again we eat the soft peanut butter desserts in silence. Last week she gave me a tour of her bedroom in order to show me the newest additions of the art thief. When I use the bathroom this evening, I study one of her paintings while I dry my hands. It’s a large watercolor in the woods like many others, painted in a palette of grey.
At the corner of the painting, a yellow post-it reads: how many bears can you find? I’ve seen this painting before, but it’s the first time I notice the bears. They push out of bushes, dive deep into the river, lounge in the branches of fir trees. I count four bears but imagine there to be more. I wonder why she hid them, who she hid them for, when she painted this years ago with steady hands. Maybe part of Emily knew that someday there would be animals all around her—squirrels and rabbits and red foxes she delighted in but could not control-- so these bears were hers to paint into existence. To bring alive on her command.
Someday, in the quiet moments after dinner, between hallucinations, when we listen to the radio, I will remember to ask Emily: how often do we create metaphors that only our future selves can understand?
Recently, Storybird selected Emily’s artwork for its website. The organization publishes the work of illustrators, comic artists, and animators and connects them with a global community of storytellers. Writers, educators, and students pick work that they love and then use the work to write related stories or poems which they publish on the website. Sometimes, a whole class of students will choose a painting and then build a complex world of characters around a single image.
Storybird normally chooses artwork with an obvious narrative, which often means artwork that includes people for writers to turn into characters. Most of Emily’s artwork does not include people, but Storybird fell in love with her paintings and selected her anyway, asking that she allow their team of artists to paint people into her landscapes. She agreed. She would like them to paint the characters from her hallucinations: the art thief, ballerinas, and children who often show up around dinner asking for food.
The word ‘hallucinate’ is derived from the latin word alucinari, which means to “wander in the mind” and is also influenced by vaticinari, which means both “to rave” and “to prophesy.” And this makes sense. Emily’s mind wanders, and so does she, moving within the physical world to inspect the images her mind has given her. She watches and interacts with her hallucinations before offering an interpretation of their meaning, serving as the sole guide to the imaginary world only she inhabits.
If the hallucinations have an opposite, they may be her paintings, brushed onto canvas, then scanned and uploaded online for anyone to access. They will not dissolve into the edges of her mind but remain stable over years and years, affixed with narrative and shared across the world. The art thief may get married, take out a 401k, have a child, or perhaps he will remain a mischievous bachelor for all eternity. The little ballerina may get into a famous dance company or maybe she will sprain her ankle, discover a love for short stories instead.
Emily and I like to discuss the possibilities at night in her apartment, listening to Shubert on classical radio. Recently, when we are mid-conversation, she asks me to turn up the radio. She invites the creatures and children around her to come closer. “Now it’s your turn to dance,” Emily says to one of them, beckoning her from the sidelines of the miniature ballroom sprawled at her feet. “And now it’s yours.” I close my eyes as she gently coaches and encourages the crowd before her. As she whispers to them, “Oh, yes. That’s lovely.”
“Are you annoyed with Ruth?” I ask Emily a month after she moves to The Marsh. During dinner, I had been seated next to Emily, and Ruth had been on the other side. Ruth stole her soup to pour it into her potato mess and grabbed at Emily’s hair while Emily bent over to eat, asking, “Are you under there?”
Emily had responded with ease, assuring her she was in fact under there, cracking an occasional joke to ease the tension when Turtle took interest. When Ruth asked Emily if she had seen her brother Emily responded, “No, but I have a brother. Those relationships are special. They tease you until you are old, but they love you all the same.”
“I’m not annoyed with her,” Emily tells me now, “She has dementia, so she can’t help it. And if you visit me long enough that will be me someday.” Emily wears a white fleece vest over her light pink shirt, with a pin of a wolf on it. From the pin dangles three strands of beads, which sway and clink when Emily walks.
I tell her I will keep coming even if she grabs my hair every time. She settles into her reclining chair and says that the homeless couple has continued their nightly slumber, and the art thief is still up to no good. She has resigned herself to let him mess with her paintings because she’s uninterested in opening the “plagiarism can of worms.”
Emily has taken a pill of something earlier in the day to curb her hallucinations, and she has had few since I’ve been there. Taking medication is a precarious enterprise for her, as it is for all patients with LBD. The medication that addresses the hallucinations, makes the Parkinson-like symptoms worse, increasing the shaking and the muscle rigidity, making it hard to walk or pick up a glass of water. The medication that addresses the Parkinson’s symptoms increases the frequency of the hallucinations. This leaves the patient with no real options.
Coupled with the difficult choices of medication are the constraints of surgery for unrelated causes. Emily suffers from cataracts in one eye and a damaged cone in the other, so she moves through her world in a perpetual fog. People and shapes jump out at her at the last minute, but mostly she is stranded in a grey dark with bright orbs floating in the distance. She has the option of eye surgery because there is no deep anesthesia needed to fix her cone, but she does not want to have it. “If it goes bad, I’ll be blind,” she says. And that loss is too much to risk. Emily cannot receive anything other than local anesthesia or she might fall into a coma and die. So if she needs work on her heart or breaks a bone badly, she and her family will have to make a difficult choice.
“I’m sorry about your vision. That must be hard.” I hold a pencil and her hallucination journal. Though in December and January friends and caretakers were adding in descriptions, lately no one else has made entries. It appears that I am the last recorder of what she sees. I wonder if anyone reads my words, contemplating their accuracy or their grief.
“It’s not so bad.” White birds, hundreds of them, swirl in through the cracked front door, diving above us, and rushing underneath the small space between the couch and the floor. While the radio plays classical music behind us, Emily is transfixed with the movement of birds across her house.
Her eyes glide up and down, following their movements, until they rest on the floor near the couch I am sitting on. Then spiders rush out in the starlets’ place.
Like a great black puddle, they seep under the chairs and tables. Black and blacker until the floor is covered, and we are surrounded. Emily stomps on them and kicks them.
“Can we move to another room?” I ask her.
“No, it’s not safe out there.” She’s unclear about who or what awaits us, but something is terribly wrong. When I suggest that maybe she sees these insects but that they are not there for me, she insists that they are real.
Eventually Emily stands near me, watching my feet. The spiders have crawled onto my heavy winter boots, entwining themselves in my red laces. She bends to pick them off one by one, and I let her. With each subsequent spider, each movement beneath her thick grey hair and stooped back, I feel helpless and ashamed. Does allowing her to grab the insects make me loving or complicit? I stare down, eyes wet. My vision blurs until I can almost see the spiders.
When she has killed them all, Emily asks me to walk to the sink with her, to turn the tap on so she can rinse off the dead. Under the cool water, she washes her hands, gently grabs mine and then cleans them too. We let the water run and run on our newly cleaned skin, and the spiders’ bodies pool and drain.
For the first three months I work with Emily, I avoid doing more than basic research on LBD because I don’t want to know how Emily will die. On the last weekend in February, on the warmest Saturday in recent history, I cave.
Over the next few years, Emily will continue to lose weight as chewing and swallowing become more difficult. Eventually, she will need a feeding tube. First there will be many falls and fractures, and then she will be permanently bed-bound. She’ll lose control of her face, unable to speak, smile, or frown. Like the protein deposits that move across her brain, ulcers will spring up in small storms across her body. It is these ulcers that may kill her through infection. And if not the ulcers than a host of murders stand in line: pneumonia, sepsis, dehydration, malnutrition, or heart failure. Her skin will be aflame with pain, so her daughters and friends will unable to hold her hand, scratch her back, or kiss her. Her muscles rigid, vision gone, she will lie still in bed as the hallucinations rage around her. Having glimpsed Medusa, she will turn to stone.
I won’t be there to see Emily in her last days. In a year or so the work I do—recording Emily’s hallucinations and spending time with her on walks—won’t make sense anymore. She will be too confused to relay her world and unable to do anything besides lie in bed. For awhile, I may read to her from books and magazines. But eventually she will no longer understand me. Eventually it will be her family and family, touching and talking to her until they cannot touch her anymore. Then there will just be words. Words like pebbles thrown in a wild and dark ocean.
I find myself trying to write Emily another ending. Tom returns to stand by her bed, breaking through the haze long enough to say, “I still love you.” All her children and grandchildren sing a hymn that she can feel, a warm blanket on her skin. One by one, the citizens of her packed planet line up to say goodbye: the pink ballerina does a spin and salute; the squirrels hold hands around her like a furry crown of flowers; the art thief unveils a secret portrait of her he has been working on all along, and it’s stunning.
Who’s to say it couldn’t happen? But dying doesn’t need to be gentle or perfect to be worthy. And Emily knows this. During my my most recent visit, we share a cup of coffee in her apartment. She has been working on drinking without a straw. By sitting up very straight, holding the cup high, and tilting it aggressively so that the liquid pools, she can slurp without spilling. It’s sunny today, and the succulents lined up on her windowsill caste shadows of seaweed behind them.
“He died,” she says of the art thief, who still lacks a name. “I’m still trying to figure out what happened. It’s all very confusing.” She sits tall and drinks cold coffee from a cup that reads MorMor, which is Swedish for a “mother’s mother.”
“I’m so sorry.” I don’t just say this—I really understand what a loss this must be.
“Yeah, I am too.”
When I visit next week, it might be different, though. Maybe the art thief was actually in a coma, or maybe it was a new liver he needed, and he found it at the last second. Emily’s world is not bound by the physical or temporal laws that bind our own. Things don’t move in one direction but swirl across space and time. A dining room can become an Olympic training pool or a humid jungle. A bird can suddenly appear in your oven. A mother’s mother can lose a friend and enemy only to find him resurrected again. Here, even a horrible death can be undone. In Emily’s world, where all things are connected and circular, every swimmer lost in the ocean eventually reaches another shore.
* All names of the care facility's residents have been changed.
by Kristin Collier
On a snowy evening in December, Emily and I eat together in the dining room of her senior assisted living facility. It’s cold outside, the first significant drop in a mild Minneapolis winter, and the room is set at 76 degrees.
“Do you see him?” Emily asks me.
I follow her gaze across the room. “The men at the table over there?”
“No, no, behind them.”
“I don’t think so.”
“He’s beautiful. So beautiful. In swim trunks diving off that giant board into the big pool underneath. Now he’s doing a back dive.” The man flips and climbs, she says, before flipping again.
I look around the dining room. Everyone wears sweaters and scarves, despite the warm room. They sit in groups of four or six, eating and sipping water—and occasionally wine-- as they catch up on their grandkids and the politics of the senior home. No one seems aware that an Olympic diver is practicing in the corner.
This is the second time I have met with Emily, but the first time that we have been alone. I have never worked in elder care before, though I have spent time with the fragile and sick. After my father’s many unsuccessful surgeries for stage IV lung cancer and the chemo that followed, I pleaded with him to take just another bite of food, another sip of milk. Before I began my work with Emily, I met with her daughter to discuss how I would assist her: I would help her keep in contact with old friends through cards and letters, clean her apartment, take her for walks, and record her hallucinations in a journal. Now, at dinner, I worry that I will offer to help at the wrong times. I don’t know when to scoot Emily closer to the table, when to offer to grab the butter for her, when to cut her food into smaller pieces, or when to give her time to eat in silence.
Emily’s spine collapsed years ago, so when she stands—as she did walking in-- she folds over herself like pants on a hanger. Seated, she hunches close to the table, her face just above the plate when she eats. Because her illness, Lewy Body with Dementia, has left her face slack, her left cheek droops. Yet, at seventy-six years old, she still looks beautiful, and when she smiles, she still looks young. Tonight she wears black stretch pants, slip-on leather shoes, and a hot pink zip-up sweatshirt. Her hair is silver at the roots and slightly blonde at the middle and ends, and she styles it wild and curly. She has blue eyes and rimless glasses, which are not visible when she walks, but I can see at the table as she tilts her head toward me.
“He has a very nice figure,” Emily says of the man on the diving board.
“What do you think he’s doing here?” The men in the corner return our stares.
“I don’t know. It seems like he’s showing off.”
Eventually, the chiseled man disappears, and I am unsure how the hallucination ends—just as I am unsure how it begins. Weeks later I will sense that Emily has filled in the missing narrative gaps that these visions create. Throughout the first night when I express wonder at what she sees, she always has an explanation as to why this thing has occurred in this moment. The fluffy, white rabbits that run by our feet smell gravy and are begging for scraps. The little girls who dance in pink tutus are preparing for their upcoming performance, and they want Emily to watch their careful and balanced spins.
But I have yet to hear the details of a vision’s conclusion. Perhaps the beautiful and naked man wrapped himself in a blue towel, slipped his feet into flip-flops, and closed the pool cover for the night. Or perhaps mid-triple back flip he just ceased to exist, and where there was once expansive turquoise of the tiled pool floor and a body slicing through the water, there is now only lattice window and black night.
Back in her second floor apartment, while Emily uses the bathroom, I wander around her living room, picking up framed pictures and artwork. Emily worked as an art teacher and then professional artist for fifty years, and her collection of paintings is stacked against the island in her kitchen and hanging on every wall of her living room. In a series of framed watercolors in her studio, silver ribbon threads icy snow banks; blue ribbon loops through green fields; and a brown bow strings together the trees of autumn. The river Emily paints moves through seasons and years-- trees blooming and thinning, the river freezing and thawing.
In the artist studio to the right of the living room are more paintings. Some of root vegetables, a country farmer’s market, and her friend’s church which was printed on postcards to sell at fundraisers. There is a sketchbook of half-completed work; stacks of paper everywhere; the smell of chemicals, paint, and wood.
Emily meets me at the door of her studio, pointing to a picture of the woods in autumn. “Do you see the extra shading around the edges?” The painting is on the floor, so from her stooped position, she has a clear view of the work.
“I’m not sure.” I don’t know what I’m looking for or if what she sees is really there. “Maybe.”
“He’s added that in there, thinking I won’t notice. He does that to all my paintings before putting them back. But I see what he’s doing.”
And so I meet the art thief, a man who appears in many of Emily’s worst hallucinations. Sometimes he steals her paintings to put them on display in giant circus-like tents outside the window. Or sometimes, more insidiously, he paints a layer over her work, claiming her ideas, angles, and images as his own. He usually chooses dark colors to destroy or manipulate her work. Even though she always catches him, she remains unable to exorcise him from her visions. I learn later that he does not have a name, and that despite the best efforts of her daughters, he will not leave her alone.
In a large photograph Emily keeps in her kitchen, she smiles from behind giant plastic 80s-style frames. She must have been in her 40s at the time, only a few years before the marriage to her daughters’ father ended. Though the picture is in monochrome browns, you can see that she has makeup on. Her is thicker, and she wears a plaid collar shirt with a turtleneck underneath. On her shoulder leaning forward into the camera lens is her pet raccoon, Silly.
“Raccoons make good pets once you train them,” Emily explains to me in an after-dinner visit to her apartment. She found Silly outside when he was a cub after his mother had been hit by a car. Against the advice of the veterinarian, Emily cared for him, feeding him puppy formula and eventually training him to use the litter box. For the year that he was alive, he was playful, jumping into the hamper to bury himself beneath piles of clothes and learning tricks like their dogs. Her daughters were particularly fond of him; they were the only children at school with such an interesting pet.
At night Silly scratched to go outside, so Emily allowed him to wander in the yard and woods behind her house. One night she heard him cry out. She searched for him in the dark with a flashlight and then again in the morning, but she never found him, and he never came home.
There are raccoons everywhere in her apartment, pictures of Silly posing with each of the children, stone raccoons keeping watch in the doorway, and porcelain raccoons popping up on shelves in her living room.
Later, I tell a friend about Emily’s raccoon, and they remind me that this is what it means to live with illness-- one day you lose a piece of yourself you love very much. You yearn for it, dream of it, and though you never stop searching, it does not return.
Emily speaks of her old life, the life she had before she was diagnosed with LBD, with clarity, remembering every trip to another country—Nepal, Turkey, Spain--every vacation, and every tradition with her daughters and their children. She describes to me what it was like to watch the sunset with her daughters on a long hike up the lower half of Mt. Everest, and how she felt standing on Pont Sant’Angelo in Rome when she studied abroad in college, gazing at the river as her fellow students played guitar next to her. “Standing on that bridge was one of my favorite moments of travel,” she says, “I was all alone and far away and young. Listening to the sounds of acoustic guitar from people I’d never met before.”
She also tells me that when her daughters were young she hid their Christmas presents in the woods behind her house. Next to each present Emily had placed a single candle. She sent her bundled-up children into the night with flashlights to search beneath the snow-covered branches for their treasures.
For a moment we are together in her memory, the candles blinking like icy glow worms, and then we are elsewhere. Emily’s living room becomes the stage for a great performance, a silent black and white movie, stretching the width of the living room. Guests shuffle past us, perching on her sofa, wicker chair, and dining room table until the room is full. I ask Emily what she sees, and she says that I am interrupting the performance. She pushes me to her room, commanding our movements in soft whispers.
“Did you see all of that? I wish they would have asked me before using my space.” She shuts the door.
“No, but I believe that it was there for you.”
“The movie really was beautiful.”
It was a romance, like many of the silent movies she sees over the months we work together. She is attracted to love stories, despite a recent break-up with a man she had loved a great deal, a pastor who had been her best friend, who she had asked to leave her when they both understood the full weight of her illness. They did research, saw into her future, and then with her blessing, he left.
He is with his new girlfriend in Arizona on this particular night, and Emily reminds me that “your heart can break at any age.”
A few weeks later, in early January, we sit on her couch together and listen to Garrison Keillor read Lord Byron’s “She Walks in Beauty” on the Writer’s Almanac. “The smiles that win, the tint that glow, / But tell of days in goodness spent, / A mind at peace with all below, / A heart whose love is innocent!”
Afterward we are silent. I glance over, sure she has fallen asleep since her eyes have been closed for the program. She looks up at me and says, “That’s so lovely.”
A white bird flies into the room, swooping and turning before perching on her cabinets in the kitchen. She watches it as it moves throughout the room, and because I cannot see the white bird, I watch her.
Emily often knows when she is hallucinating. A clue, she explains in late January, is when the people she speaks with do not speak back. But her knowledge that what she sees is made from her brain, a symptom of a strong and terrible illness, does not keep her from believing in the visions. That is to say, she is of two worlds, belief and disbelief, and participates in them both fully.
She tells me on several occasions that she shares her bed each night with a homeless couple who stumbles in to escape the cold. Sometimes they “fornicate” on her bed without her permission, but mostly they just show up at bedtime to bury themselves in her feather blankets and clean sheets.
“I think you need to kick them out. You’re too nice. It’s your bed, and they can sleep on the pullout couch,” I tell her one day after she explains that the night before they hogged the whole bed, forcing her to curl up in a tiny corner. Our conversation moves between her worlds, both of us aware that the couple does and does not exist at the same time.
“I don’t know. They have nowhere to go now, and they aren’t so bad.”
I wonder then where hallucinations meet the contours of old age, which—even for those with the most robust social lives such as Emily—involves a lot of time alone. Her daughters, grandchildren, and friends visit often, but the time between is filled with small children dancing, dogs playing at her feet, naked men stretching or diving, a homeless couple stopping by to snuggle at night, and a cast of other characters who seem to show up on schedule.
Emily wants to know what about her illness makes me curious, so I ask her if her hallucinations scare her.
“Not really, and sometimes they’re delightful.”
Over stir-fry one night, the side of the dining hall transforms into a jungle. Thick wet leaves hang from the ceiling. Emily has just asked me if I am married, and though she acknowledges that at thirty I still have lots of time, she also thinks perhaps I should start to “get a move on it.”
“Do you see that man, the tall one with the black suit on?” Emily sees men often, always good looking, often undressed. We smile at her good fortune, that her hallucinations should be so blessed.
“I can’t. I’m sorry. Tell me about him.”
“Oh he is very good-looking. Maybe thirty or so. He keeps throwing kids up in the air and then catching them, so I can see he is very good with children.”
I turn to follow her gaze. This is our pact. I will always try to see what she sees, and when I inevitably cannot, she will describe it in detail. She will have her vision, and I will have her words.
“Could be a good husband for you.”
A few minutes later she changes her mind. The man has started picking out the foliage, sticking it at odd angles into his hair, so that he wears a porcupine crown of flowers and sticks, “Far too unstable” for me, she has decided.
A herd of small animals gather at her feet, and she bends to whisper to them. I finish my vegetables, look into the jungle, imagine the handsome king with the messy crown.
A month and a half after I meet Emily, she moves to a different section of the facility known as the memory suite and officially called “The Marsh.” Complete with buzzing doors only accessible by a code, this suite is intended for those with severe dementia. These patients might wander off on their own and generally need more assistance. Emily is distressed about changing apartments, losing her studio, and having to decide what to fit into the tiny kitchenette, living room, and bedroom. Along with her studio and deck, she loses her washer and dryer, her oven, and the confidence that she can take care of herself. It is for her own safety, she knows, but it is a loss all the same.
The memory suite has its own dining room, which serves one of the course options from the dining room we used to frequent together. Many of the tenants eat in their rooms, so The Marsh crowd each night is composed of the same group of people, usually sitting in the same order around one of two tables in the room.
On my first night eating with Emily in the new dining hall, I sit next to Ruth*, who is vegan, who always arrives early and is served first. “Where’s my brother?” she asks as soon as I sit down.
I don’t know, and Gerald who has bright blue eyes and two seemingly ineffectual hearing aids screams out, “What does she want to know now?”
Sue, who wears a thick yellow sweater, gold bangles, a heavy beaded necklace and lipstick, wants to know what Gerald needs, and the woman next to Sue--who refuses to tell me her name no matter how many times I show up and express interest says, “Here we go now. This is when the fun starts!”
I learn later that she says this each time confusion erupts at the table. When mistakes of memory and hearing create tension, she has fun. At the end of my first dinner in The Marsh, I start calling her Turtle.
I spend my first hour at the table managing the conversation between Ruth, Sue, Gerald, and Turtle. If I don’t answer Ruth quickly enough she is annoyed. Sue blames her poor hearing but keeps asking until I am available to answer. Turtle tries to start conflict and then watches it spiral (“Look at Sue flirting with Gerald. Boy, that’s precious”). And Gerald just laughs. He loves being at dinner, especially when he realizes I will drink coffee with him after we are finished eating.
At first I am anxious over Emily’s role in the new community. The people around the table cannot grasp her illness since it it new to them each time they see her, and at every dinner, they have a new idea for her back or neck: a brace, a pillow, a surgery, a thing someone’s cousin’s cousin did for his back that seemed to work. Emily and her family have fully researched all her options, and she knows her collapsed spine will never straighten, but she contemplates their ideas with care, offering to try their suggestions if the table can put her in contact with the right friend or specialist.
Most of the table—with the exception of Turtle—seem delighted to be at dinner. Because Sue cannot remember me, we have the same conversation every time I come, and at the conclusion she tells me, “I’m happy you’re here tonight. We’re going to have fun.” Gerald agrees, and Turtle rolls her eyes.
Despite their delight in one another, there seems to be a collective desire to recognize the ways in which someone else is worse off. So when Sue has a bruise on her face from falling, the others acknowledge this situation with both worry and relief. There is safety in someone else’s struggle because it normalizes their own challenges. In this way, Emily is confusing to the table. She is funny, sarcastic, knows to ask the nurses about current events, and remembers everyone’s names. But she can hardly finish her meal, her back and weak arms making it difficult for her to lift the spoon or fork to her mouth.
One night I arrive to dinner after Emily has been escorted downstairs ahead of me. There are no seats next to her, so I sit across from her, wedged between Ruth and Turtle. The first course is soup. Emily uses the smaller of the two spoons beside her bowl because the soup spoon is too heavy. Normally I help her locate the spoon on the table because her poor vision results in her seeing double. Two spoons, two heaps of potatoes, two Ruths, two mes. But across the table I am stuck watching her slowly feel the surface of the table until she finds it.
She tries to raise the soup-laden spoon to her mouth once, but it’s too heavy. She moves her face closer to the bowl so that her mouth is nearly at the edge. Emily eats like this often, her face just on the other side of the plate or bowl so that she is only required to balance the food for a moment before it reaches her mouth. She tries again and again and cannot hold the spoon long enough to bring it to her face.
“Poor thing,” Ruth says to me. She scoops a heavy spoon of beets into the bowl of her potatoes and mashes them together. “I feel sorry for her.” Ruth adds broccoli into the bowl, stirs it, but does not eat it. I am unsure of what to say to honor Ruth’s concern but also support Emily, show that she does not need to be pitied and that she is doing fine. My silence prompts Ruth to tell me I am a rude girl.
Emily finishes every single dish that night, but I am unsure if she enjoys any of it. Her favorite course of dinner is dessert, and she also orders ice cream even though it is nearly impossible for her to eat, even when I cut it up for her and request that it be warmed in the microwave. Tonight, Emily spills ice cream on her lap four different times. I quickly replace each ruined napkin with another. She dips her hands in the vanilla mess, once dips her nose, and by the end has ice cream sprinkled on the ends of her hair.
By the time she is done, everyone but Ruth has left. Gerald, who normally stays late, left after only one bite. He stacked his food on his walker when he found the chicken was cold and dropped it off at the cook’s station on his way out. Turtle left without eating, and Ruth continued to mash her vegetables even when Emily and I left, and she was all alone.
On the way back to Emily’s room, we walk by a white puppy, a woman holding a heavy vase of flowers near the wall, and a few ballerinas, spinning and leaping.
I hesitate to call Emily’s hallucinations poetic because that seems a luxury of the able-bodied, whimsical, and young. The luxury of one who can comfortably eat soup, see clearly, walk upright, and who can speak of the future without dread. Yet, there is poetry in the bird that is trapped in Emily’s oven. As it flaps its wings, the sound echoes around us. So, too, is there poetry in the ghostly figure that pours giant bags of white powder around the edges of living room. When the wind picks up, it swirls around us, a snowstorm of flour and sugar.
Certainly Emily’s hallucinations are imaginative, dissociative, disruptive, and beautiful. Sometimes we work together to make meaning in their collisions and other times in their thematic threads. We find fear of loss, a love of nature, interest in art and performance, and an enormous sense of humor. The hallucinations can be warning, parable, nightmare, love letter, and poem all at once.
I think of Emily as I read Federico Garcia Lorca’s poems. His poetry is bright and messy and visceral, changes shape quickly and without warning. In “1910 (Interlude)” he writes:
My eyes in 1910
saw the white wall where girls urinated,
the bull’s muzzle, the poisonous mushroom,
and a meaningless moon in the corners
that lit up pieces of dry lemon under the hard black bottles.
Within one stanza, you see a bathroom, cow’s nose, mushroom, moon, and bit of fruit underneath a bottle. This is what it feels like to be with Emily—to be both with her on the couch but to also be in a forest, to meet a man wearing stovepipe pants and a young child who likes to pee in coffee cans.
The average life expectancy of someone diagnosed with LBD is five to eight years from the onset of symptoms, which can be a difficult timeline to narrow down. Emily was officially diagnosed in the winter of 2014, though she spent the year before trying to nail down the illness that was disrupting her sleep and slowly crumbling her spine. Emily knows that in three to five years the hallucinations will slowly take over her mind, like an eager wave that licks at the beach each year, slowly eroding the shoreline. Eventually, she will be submerged in a vast and alien ocean. She may see silver jellyfish or neon sea anemone, but she will see them all alone.
Emily is wary of complaining, so she doesn’t. When she spills an entire dinner on her lap or when she is forced to rock back and forth in her chair to gain the momentum to stand, she does not comment. Even when the art thief steals an entire collection of her favorite paintings and sells them off in his name, she remains grateful for her life.
She is privileged, attended college in a decade when few women did, visited countries across the world, owned her own home with land behind it, and now is able to afford a beautiful apartment in an upscale facility to be sick in. She acknowledges all of this. But she is losing her mind, and she is dying, and she is afraid all the same.
In late February I sit on Emily’s worn couch, and she on the leather recliner across from me, as we discuss our plans for the day. Because it is exhausting to hold her chest and head up, she keeps her knees bent and heels tucked in close to her body. Curled up into a tiny comma, she looks like a teenage girl.
Emily has just returned from a pedicure; her toes are the color of blush. Earlier today, the art thief informed her that he will be vacationing for a few weeks and will not be around to practice his paintings on her work. Emily is worried that she might miss him. “He is tall and strong, with blonde and very curly hair. He has blue eyes. Like a Viking,” she tells me. On the floor before her, hundreds of large white and black worms nuzzle into the carpet. She stops to pick one up before asking, “Where should we walk to today?”
We will go to a bakery across the street from her building, no more than a five-minute walk. I kneel before Emily to help with her shoes. I hold her foot and feel the smallness of her heel, remembering the way my father’s feet felt three months after he started chemotherapy and two months before he died. The winter in which he was sick, his body was all toothpicks and paper, and I was scared to touch him.
After her shoes are on, I guide her thin arms through her loose winter coat. Bend before her again to zip; place a cane in one hand; slip my own hand into her free one. To love someone means to love their body. I remember this when I clean her hands of food or wipe away her saliva which has accidentally dripped on me.
Outside, winter snow has disappeared into cold sidewalk. We finish the walk, but it is not easy. First we navigate four curbs and a wait at the bakery. Emily walks slowly, and because she cannot see, I constantly redirect her with a gentle word and pull of my hand. People stare at us as we walk. Me bent next to her so that she can hear me. She occasionally stopping to whisper to the dogs that have followed us.
At home again we eat the soft peanut butter desserts in silence. Last week she gave me a tour of her bedroom in order to show me the newest additions of the art thief. When I use the bathroom this evening, I study one of her paintings while I dry my hands. It’s a large watercolor in the woods like many others, painted in a palette of grey.
At the corner of the painting, a yellow post-it reads: how many bears can you find? I’ve seen this painting before, but it’s the first time I notice the bears. They push out of bushes, dive deep into the river, lounge in the branches of fir trees. I count four bears but imagine there to be more. I wonder why she hid them, who she hid them for, when she painted this years ago with steady hands. Maybe part of Emily knew that someday there would be animals all around her—squirrels and rabbits and red foxes she delighted in but could not control-- so these bears were hers to paint into existence. To bring alive on her command.
Someday, in the quiet moments after dinner, between hallucinations, when we listen to the radio, I will remember to ask Emily: how often do we create metaphors that only our future selves can understand?
Recently, Storybird selected Emily’s artwork for its website. The organization publishes the work of illustrators, comic artists, and animators and connects them with a global community of storytellers. Writers, educators, and students pick work that they love and then use the work to write related stories or poems which they publish on the website. Sometimes, a whole class of students will choose a painting and then build a complex world of characters around a single image.
Storybird normally chooses artwork with an obvious narrative, which often means artwork that includes people for writers to turn into characters. Most of Emily’s artwork does not include people, but Storybird fell in love with her paintings and selected her anyway, asking that she allow their team of artists to paint people into her landscapes. She agreed. She would like them to paint the characters from her hallucinations: the art thief, ballerinas, and children who often show up around dinner asking for food.
The word ‘hallucinate’ is derived from the latin word alucinari, which means to “wander in the mind” and is also influenced by vaticinari, which means both “to rave” and “to prophesy.” And this makes sense. Emily’s mind wanders, and so does she, moving within the physical world to inspect the images her mind has given her. She watches and interacts with her hallucinations before offering an interpretation of their meaning, serving as the sole guide to the imaginary world only she inhabits.
If the hallucinations have an opposite, they may be her paintings, brushed onto canvas, then scanned and uploaded online for anyone to access. They will not dissolve into the edges of her mind but remain stable over years and years, affixed with narrative and shared across the world. The art thief may get married, take out a 401k, have a child, or perhaps he will remain a mischievous bachelor for all eternity. The little ballerina may get into a famous dance company or maybe she will sprain her ankle, discover a love for short stories instead.
Emily and I like to discuss the possibilities at night in her apartment, listening to Shubert on classical radio. Recently, when we are mid-conversation, she asks me to turn up the radio. She invites the creatures and children around her to come closer. “Now it’s your turn to dance,” Emily says to one of them, beckoning her from the sidelines of the miniature ballroom sprawled at her feet. “And now it’s yours.” I close my eyes as she gently coaches and encourages the crowd before her. As she whispers to them, “Oh, yes. That’s lovely.”
“Are you annoyed with Ruth?” I ask Emily a month after she moves to The Marsh. During dinner, I had been seated next to Emily, and Ruth had been on the other side. Ruth stole her soup to pour it into her potato mess and grabbed at Emily’s hair while Emily bent over to eat, asking, “Are you under there?”
Emily had responded with ease, assuring her she was in fact under there, cracking an occasional joke to ease the tension when Turtle took interest. When Ruth asked Emily if she had seen her brother Emily responded, “No, but I have a brother. Those relationships are special. They tease you until you are old, but they love you all the same.”
“I’m not annoyed with her,” Emily tells me now, “She has dementia, so she can’t help it. And if you visit me long enough that will be me someday.” Emily wears a white fleece vest over her light pink shirt, with a pin of a wolf on it. From the pin dangles three strands of beads, which sway and clink when Emily walks.
I tell her I will keep coming even if she grabs my hair every time. She settles into her reclining chair and says that the homeless couple has continued their nightly slumber, and the art thief is still up to no good. She has resigned herself to let him mess with her paintings because she’s uninterested in opening the “plagiarism can of worms.”
Emily has taken a pill of something earlier in the day to curb her hallucinations, and she has had few since I’ve been there. Taking medication is a precarious enterprise for her, as it is for all patients with LBD. The medication that addresses the hallucinations, makes the Parkinson-like symptoms worse, increasing the shaking and the muscle rigidity, making it hard to walk or pick up a glass of water. The medication that addresses the Parkinson’s symptoms increases the frequency of the hallucinations. This leaves the patient with no real options.
Coupled with the difficult choices of medication are the constraints of surgery for unrelated causes. Emily suffers from cataracts in one eye and a damaged cone in the other, so she moves through her world in a perpetual fog. People and shapes jump out at her at the last minute, but mostly she is stranded in a grey dark with bright orbs floating in the distance. She has the option of eye surgery because there is no deep anesthesia needed to fix her cone, but she does not want to have it. “If it goes bad, I’ll be blind,” she says. And that loss is too much to risk. Emily cannot receive anything other than local anesthesia or she might fall into a coma and die. So if she needs work on her heart or breaks a bone badly, she and her family will have to make a difficult choice.
“I’m sorry about your vision. That must be hard.” I hold a pencil and her hallucination journal. Though in December and January friends and caretakers were adding in descriptions, lately no one else has made entries. It appears that I am the last recorder of what she sees. I wonder if anyone reads my words, contemplating their accuracy or their grief.
“It’s not so bad.” White birds, hundreds of them, swirl in through the cracked front door, diving above us, and rushing underneath the small space between the couch and the floor. While the radio plays classical music behind us, Emily is transfixed with the movement of birds across her house.
Her eyes glide up and down, following their movements, until they rest on the floor near the couch I am sitting on. Then spiders rush out in the starlets’ place.
Like a great black puddle, they seep under the chairs and tables. Black and blacker until the floor is covered, and we are surrounded. Emily stomps on them and kicks them.
“Can we move to another room?” I ask her.
“No, it’s not safe out there.” She’s unclear about who or what awaits us, but something is terribly wrong. When I suggest that maybe she sees these insects but that they are not there for me, she insists that they are real.
Eventually Emily stands near me, watching my feet. The spiders have crawled onto my heavy winter boots, entwining themselves in my red laces. She bends to pick them off one by one, and I let her. With each subsequent spider, each movement beneath her thick grey hair and stooped back, I feel helpless and ashamed. Does allowing her to grab the insects make me loving or complicit? I stare down, eyes wet. My vision blurs until I can almost see the spiders.
When she has killed them all, Emily asks me to walk to the sink with her, to turn the tap on so she can rinse off the dead. Under the cool water, she washes her hands, gently grabs mine and then cleans them too. We let the water run and run on our newly cleaned skin, and the spiders’ bodies pool and drain.
For the first three months I work with Emily, I avoid doing more than basic research on LBD because I don’t want to know how Emily will die. On the last weekend in February, on the warmest Saturday in recent history, I cave.
Over the next few years, Emily will continue to lose weight as chewing and swallowing become more difficult. Eventually, she will need a feeding tube. First there will be many falls and fractures, and then she will be permanently bed-bound. She’ll lose control of her face, unable to speak, smile, or frown. Like the protein deposits that move across her brain, ulcers will spring up in small storms across her body. It is these ulcers that may kill her through infection. And if not the ulcers than a host of murders stand in line: pneumonia, sepsis, dehydration, malnutrition, or heart failure. Her skin will be aflame with pain, so her daughters and friends will unable to hold her hand, scratch her back, or kiss her. Her muscles rigid, vision gone, she will lie still in bed as the hallucinations rage around her. Having glimpsed Medusa, she will turn to stone.
I won’t be there to see Emily in her last days. In a year or so the work I do—recording Emily’s hallucinations and spending time with her on walks—won’t make sense anymore. She will be too confused to relay her world and unable to do anything besides lie in bed. For awhile, I may read to her from books and magazines. But eventually she will no longer understand me. Eventually it will be her family and family, touching and talking to her until they cannot touch her anymore. Then there will just be words. Words like pebbles thrown in a wild and dark ocean.
I find myself trying to write Emily another ending. Tom returns to stand by her bed, breaking through the haze long enough to say, “I still love you.” All her children and grandchildren sing a hymn that she can feel, a warm blanket on her skin. One by one, the citizens of her packed planet line up to say goodbye: the pink ballerina does a spin and salute; the squirrels hold hands around her like a furry crown of flowers; the art thief unveils a secret portrait of her he has been working on all along, and it’s stunning.
Who’s to say it couldn’t happen? But dying doesn’t need to be gentle or perfect to be worthy. And Emily knows this. During my my most recent visit, we share a cup of coffee in her apartment. She has been working on drinking without a straw. By sitting up very straight, holding the cup high, and tilting it aggressively so that the liquid pools, she can slurp without spilling. It’s sunny today, and the succulents lined up on her windowsill caste shadows of seaweed behind them.
“He died,” she says of the art thief, who still lacks a name. “I’m still trying to figure out what happened. It’s all very confusing.” She sits tall and drinks cold coffee from a cup that reads MorMor, which is Swedish for a “mother’s mother.”
“I’m so sorry.” I don’t just say this—I really understand what a loss this must be.
“Yeah, I am too.”
When I visit next week, it might be different, though. Maybe the art thief was actually in a coma, or maybe it was a new liver he needed, and he found it at the last second. Emily’s world is not bound by the physical or temporal laws that bind our own. Things don’t move in one direction but swirl across space and time. A dining room can become an Olympic training pool or a humid jungle. A bird can suddenly appear in your oven. A mother’s mother can lose a friend and enemy only to find him resurrected again. Here, even a horrible death can be undone. In Emily’s world, where all things are connected and circular, every swimmer lost in the ocean eventually reaches another shore.
* All names of the care facility's residents have been changed.