Happy Birthday, Mom

I haven’t written a blog post in a long time. I’ve been busy — studying, reading, planning lessons, grading papers, teaching, living my life. I still visit my mom every week, or almost every week. I still sit with her and hug her. She still doesn’t want me to leave.

When I visited her a few weeks ago, she was like she generally is these days. Her head was slumped on her shoulders when I arrived, and her eyes were closed. Her hair, long since gone white, was uncombed. She was breathing the regular, measured breaths of someone in a deep sleep. And she was sitting in the lounge, on a chair in front of the TV, surrounded by other residents.

I caressed her hair and kissed her to wake her up. She was groggy, and her first words sounded like they might be left over from her dream, because they didn’t really make sense. At least not to me.

There was a time, not too long ago, when my mom cared about her appearance. She combed her hair and put on lipstick. She had clothing preferences, certain colors she liked to wear. The way a fabric fell on her mattered to her. It’s strange to recall this, because for so many years, I listened to her put herself down. She thought she was ugly, and she said it. But she took care of herself. She may or may not have really thought she was ugly, but she was at least well-groomed. Not anymore.

I woke her and coaxed her out of her chair, and as she leaned on her walker, I saw how her clothing hung on her. I’ve been noticing this a lot lately. Her clothes often don’t match or even really fit her. If I take a quick look at the name tag on the garment, I sometimes notice it reads someone else’s name. Sometimes she is wearing a nightgown for a shirt, and she doesn’t have a bra on. And under her pants I can see the bulging of a diaper.

My mom turns 91 today, and with all that I have going on in my life, I won’t get to visit her. We won’t have cake, and she won’t open a present. This will have to wait until the weekend, but it doesn’t matter, not to her. She doesn’t know it’s her birthday. She doesn’t know what a birthday is.

But she’s not doing so badly. She still gets around on her own two feet. She still eats without much assistance. She still looks for love and comfort where she can find it. She laid her head on another patient’s shoulder, a man’s shoulder. She seems to know, instinctively, that with another human being, she can find some warmth.

And she still sometimes has flashes of reality. The last time I visited her, from the moment I arrived, she was anticipating my departure and feeling sad about it. She cried on seeing me, knowing she would have to say goodbye. She hasn’t demonstrated that kind of awareness in a while. It made me sad and happy at the same time.

I don’t have hope for my mom, at least not in the conventional sense. She is in her last moments, and life is draining out of her. And I have less to say about it, which is another reason I am not writing often. There is nothing new to report, and certainly less that is hopeful. Just as Alzheimer’s and old age are turning my mom into an empty shell, they are also making me quiet, stealing my will if not my voice. But like my mom, I still have some moments.

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Happy Mother’s Day

My mom pooped in her pants yesterday. It was pretty gross. Thank god for Harriet, one of the aides on her unit, who cleaned her up.

Last week and the week before, my mom threw up. She was at the dinner table eating the three or four bites that usually constitute her entire meal — mom was never much of an eater, even before Alzheimer’s — when suddenly she burped and started to puke. We grabbed for napkins and her bib, and she lost it all, those few bites and whatever she’d eaten or drunk an hour or two before. The first week it happened, I took her back to her room, and the nurse took her vital signs. She was fine.

The second time that she threw up, two minutes after it happened, she said, “I’m hungry.” I gave her some ice cream; it was in a little styrofoam container sitting next to her plate. She took a few spoonfuls and washed it down with coffee. If I’d told her she’d just thrown up, she would have called me a liar.

I know things happen to people as they move into very old age. Their bodies become unwieldy in a certain kind of way. Even without Alzheimer’s, very old people can have trouble putting one foot in front of the other. Body parts hurt, and they don’t move like they used to. Climbing into a pair of pants becomes difficult. And even people who don’t have dementia can lose control of their bodily functions. So much breaks down in very old age.

It’s not hard to see very old age as a time when dignity is lost. I thought that for a moment as Harriet, with a mask over her face and latex gloves on her hands, went to work to clean up my mom. Or as I held napkins in front of her face while she vomited, and the others at her table continued to eat their meals, either trying not to look or not even noticing, caught up in their own very old age. There is no dignity, it seems.

And yet, my mom never remembers these uncomfortable experiences after she has them, even a minute or two after. They don’t leave any trace of embarrassment or trauma in her memory, no remnants of pain.

On Mother’s Day last year, I posted an old photo on Facebook of my mom in her 20s. She’s sitting next to a rocky brook, the sunlight in her dark brown hair, a look of anticipation in her eyes. My father was the photographer, and it was taken before they were married. It’s the most beautiful picture I have of my mom, maybe because she is young, maybe because she is in love, maybe because my father is in love with her. Or maybe because she believes it’s all ahead of her, the marriage, the children, all the gifts that life has to give. She’s ready to receive them.

What she never expected, I would bet, is old age, the disintegration of her body and her mind. Just as I imagine she never expected a difficult marriage, or a divorce, or financial problems, or children who disappointed her or broke her heart. She never expected Alzheimer’s, either.

In some way, though, when I look at my mom today, it seems that 20-something woman isn’t all that far away. Her hair is no longer brown, and her body is no longer straight and strong. But she still has a sparkle in her eye, and when she sees me, whether she can name me or not, she still has that look of anticipation, as if she knows there is love. She has this, still. At least for now.

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New Horizons

Ever since I started my new teaching job in the fall, it’s been hard for me to take a whole Saturday or Sunday to visit my mom, so I steal time away when I can to sit with her for an hour or so. My school in the Bronx isn’t that far from the Hebrew Home, so I will sometimes get into a Lyft at the end of a day and go over.

So much happens between our visits — in my own crowded brain, if not in her life — that when I arrive I sometimes don’t recognize her. She is aging, like all of us, and changing, becoming smaller in stature and more hunched over, receding into the background as the disease takes over her brain.

It was eight years ago this month that she began to show major symptoms, eight years since she was diagnosed with Alzheimer’s. I’ve watched it steal little bits of her brain, throwing her into moments of terror and hours of desolation as she lost track of what she was trying to do, or of what her life meant. I’ve also watched it wipe away worry and anger and resentment, freeing her from the prison that her brain could sometimes be. Alzheimer’s is all-consuming. But it isn’t all bad.

Today, she is sleeping in a chair when I arrive, in a line of women sitting in front of a window, the sun streaming in. It’s such a basic pleasure, napping in the sun, and she is totally into it. The woman sitting next to her gets up to give me her chair, and as I look down, I see that my mom is wearing a dress. My mom never wears a dress. Not in the almost 50 years that I’ve been alive.

But as change goes, my mom in a dress is not that big a deal.

I take her hand and stroke it, give her a kiss on the cheek. She doesn’t stir. I smooth out her hair, whisper into her ear, lightly squeeze her arm, rest my hand on her neck, touch her shoulder, and give her a slight shake. She doesn’t move.

“You know,” says a lady sitting close by, “I never noticed until just now how much you look like her.” I nod. It’s true. The lady who says this doesn’t really know us, has no history with us, but it’s still true.

“Your mom is a trooper,” she says.

I agree with her as I look down at my mom, who is intent on staying asleep, impervious to my attempts to wake her.

“I don’t know how old she is,” the lady says, “but she’s good.”

“She’s 90,” I say.

“Well, good for her. We should all be so good when we’re that age.”

“Yes,” I say.

My mother still doesn’t move.

“Let her rest,” says the lady, and I nod, having given up trying to rouse her. I put my head on her chest to make sure she’s breathing. She is.

“You know,” says the lady, “I never noticed until just now how much you look like her.”

I nod.

“I don’t know how old she is,” the lady says, “but she’s doing good.”

“She’s 90,” I say.

“Wow. We should all be so good at that age.”

I haven’t forgotten that I’m on an Alzheimer’s unit.

I have not been sleeping well myself lately, with all of my worries about work and school and changing careers, not to mention my hot flashes, a new experience for me. My mom is doing the sleeping for me, it seems. I am happy for her.

She stays asleep for a long time, and when she wakes, she acts as if she is crawling out of a deep cave. Her voice is muffled, and only some of her words can be heard.

“Uh so I don’t ghhh mmm try that,” she says. I put my head close to hers and try to hear her, and it becomes clear that only some of her sounds are actually words.

But the sounds gradually get louder and clearer. And a few more words come out.

We sit there for a little while, and she holds my hand and kisses it. She doesn’t really know who I am — I know because I ask — and she can’t tell me what she’s thinking, not in a way I can understand. And she’s long past asking me about my life.

But still, some things pass between us. Love, for sure, and some kind of knowing. But I can’t put it into words.

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Boxing Day

I walk down the hallway toward my mom, who is leaning against her walker with her friends surrounding her. They notice me and wave as I approach. She sees me, but she doesn’t wave, and when I come up alongside her and put my hand on her shoulder, she thinks, or appears to think, that she might know me.

“Do you know who I am?” I ask.

“Um . . . maybe,” she says. “Um . . . I think so.”

I say, “Let’s go then,” and she says, “Okay.” We start walking down the hall because I really want to put my coat into her room and to give her chocolate truffles that I brought her for Christmas. And lay down on her bed and unwrap the candies for her so that she can eat them.

And take a nap with my mom.

When we walk through the door to her room, she doesn’t recognize the bed as her own, but that doesn’t matter. It’s only been her bed for four years, one month, and nine days, as long as she’s been at the Hebrew Home. Not that long, really, when you consider she’s been on the earth for 90 years, one month, and 26 days.

“Yesterday was Christmas,” I say, “so I brought you this candy.”

She gives me a blank look. The holiday that used to consume her, send her to the stores months in advance to look for gifts and decorations and weeks after as she searched for half-off Christmas ornaments and sales on candy canes, just doesn’t register. It has been her holiday for 90 years, and she’s been telling the story of it for 80 years or more — the Sunday church pageant of her childhood, the box of ribbon candy given to her every year by the pastor, the warm feeling she gets when she sees lights on a tree. But not anymore, I guess. It is no longer with her, not in the way it used to be.

We call Debbie, and she asks, “Who’s Debbie?” I tell her, “Your daughter.” We listen as Debbie talks, and my mom falls asleep to the sound of Debbie’s voice. When she awakens, I say, “Do you know me?” She says, “No,” and I say, “Okay.” But then I try to tell her I am Beth, and she says, “Beth?” Her tone tells me she doesn’t recognize the name. I have been her daughter for 48 years. But now? Not in the way I used to be. I am the kind stranger who brings chocolates, and that is something, I guess.

She falls asleep again, and tired as I am, I don’t join her. I lay there, looking at Facebook on my phone, distracting myself.

When she awakens again, she begins a conversation with me. She has something to tell me, but I can’t make it out because the words don’t go together. But she works hard to say them, so I work hard to listen. She makes up some words because she can’t remember the real ones. It is a dream she is trying to recount, I think, or something that happened earlier in the day, or something that happens regularly. I can’t tell, because I don’t recognize the combinations of words.

I teach high school now, and we give students something called “sentence frames” or “sentence starters” to help prompt their writing. They fill in the blanks of sentences that start something like “In [title of book], the author conveys the idea that _________________. And that helps them continue to write whole essays about themes and literary elements and characters in books.

As I listen to my mom tell me her dream, I can pick out her own sentence starters.

“Yes, and then _____________________________,” she says. “I can’t believe that ______________________,” she continues. “We were so ___________________.”

But I can’t understand what she’s using to fill in the blanks. The words she uses, how she combines them, and the words she makes up . . . I can’t even reproduce them here.

I still listen, though, and I pretend to understand, to encourage her, in the way you talk to a baby or a toddler whose words make sense only to them. I follow the intonation and I respond as appropriately as I can, asking for more information, whether it means anything to me or not. Like improvisation, I respond never with “No” but only with “Yes, and…”

“She was really _____________________________________,” my mom says.

“Really? I didn’t know that,” I say (and I still don’t).

“Yes! It was so ________________________,” my mom replies.

“Oh, good!” I say. “And what else?”

It doesn’t really matter, I guess, only it’s sad, because the language, the English language, has been with her for more than 85 years. But now? Not like it used to be.

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Changes

“I have to pee,” my mom said, moments after I arrived for our visit. We were entering her room, and so I turned her right around and took her into the hall bathroom. The sink in her room was broken, and I wanted her to be able to wash her hands afterward.

The hall bathroom has a shower and a separate toilet, with a sliding door. I led her to the toilet.

“Wow,” my mom said. “What do I do?”

“Well,” I said, “you pull down your pants.”

“Like this?” she asked, managing to get them down to her knees.

“Yes, and a little further,” I said. “And then you sit on the toilet.”

“What is this all about?” she asked, sitting down as I tried, from the other side of the door, to slide it closed. I didn’t really want to watch her.

“I’ve never done this before,” she said.

“Oh, I’m certain you have,” I said.

“My mommy never did this,” she said against the sound of tinkling.

“I’m sure she did,” I said.

“Do you do this?” she asked.

“Yes, I do.”

“Every day?”

“Several times a day.”

“Oh wow. I can’t believe it.”

She needed help with the toilet paper.

“How much do I take?”

I couldn’t help without opening the door and joining her. So I did.

After we left the hall bathroom, we had a cookie and a call with Kathy and then a nap. It was a nice visit.

A few weeks ago, we had the type of visit we haven’t had in a long time. She was upset and fretting about her inability to make sense of anything. She seemed aware of the loss she’s experienced and was grieving it.

For a little while, I couldn’t tell if I wanted her aware yet suffering or happy and totally out of it. (Wait. I still can’t decide about that.)

“Help me!” she called out to me from inside the bathroom in her room that day. She was worried she was going to clog the toilet and wanted me to intervene somehow.

“You’ll be fine, Mom,” I called back. “Don’t worry. Everything will be fine!”

“Please, please help me!!”

It had been a long day and I just wasn’t up to dealing with my mom’s bowel movement.

“Everything will be fine, Mom!”

“Help me!”

“I promise you everything will be fine! Just finish and flush!”

“You hate me!” she said. “You hate me. My own brother won’t even help me.”

She repeated it many times as I sat on her bed, unable or unwilling to move.

It doesn’t bother me when she thinks I’m her brother. Or when she thinks I’m her sister or her mother. Or when she forgets she even has a daughter named Beth, or any children at all. When all she remembers is her mother. In some ways, she’s climbing back into her mother’s womb. I can live with that.

But I hate when she takes me back to childhood, accusing me of hating her and trying to control me by guilting me. It doesn’t happen that much these days. And for that I thank Alzheimer’s.

The last time I visited, last Friday afternoon, we sat in the dining room where they’ve moved the TV room. Hebrew Home is making some changes. It’s a bizarre setup, meant to make better use of their space, but I have to believe they’re still in transition. A TV is mounted to a wall at the end of a room full of tables for eating, and a couple of rows of armchairs like orphans are set up haphazardly in front of it, with no sense that any of it belongs.

“Sit here,” my mom said, but there was no seat for me until I dragged a chair over from a table.

It felt like sitting in an aisle, where someone might step on us.

“Were you upstairs before?” my mom asked, and I nodded because there was nothing else to do. Upstairs? There is no upstairs.

“Is mom there?” she asked.

“No,” I said. “She’s at home.” (I never tell her anymore that having been born 137 years ago, her mother is now dead.)

“She’s home?” she asked, and I assured her, right away, that it was okay.

“She’s not alone,” I said.

“But what about me?” she asked. “She’s supposed to take me home!”

“She will,” I said. “She will.”

In all the fog and confusion, one thing is clear. Sitting in the TV room which is now in the dining room, with no ability to find her own way to the bathroom and no knowledge that she has her own room, she is homeless. Nothing exists for her beyond that chair and occasionally, the deep past.

But her words rarely lead us back there, and when they do we go only so far; her words rarely lead us anywhere anymore. And the one consolation seems to be that she doesn’t know it, at least not most of the time.

How much do I want her to know? It’s a hard question to answer.

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Meaning

When I walk into the TV room where my mom sits with the other residents, they are all motionless in wheelchairs and arm chairs. While they’re facing the TV set, their eyes are wandering or down, or to the side, or looking inward, or closed. TV is a waiting game for the next meal.

But this time, a Friday afternoon, it’s not TV at all that they’re “watching,” but a young woman distributing bread and grape juice, with songs in Hebrew playing in the background.

“It’s the Shabbos ritual, I think,” I tell Kathy on the phone later that day.

“Sounds like communion to me,” she says.

“Yeah, the Jewish communion,” I say, “only there’s no body or blood, just bread and juice.” I don’t know what it means.

“Do you want some, Mariann?” the young lady asks.

“Oh … I don’t … okay,” my mom says.

The young woman tears her off a very small piece of bread, and gives her about an inch-and-a-half of juice in a cup.

“Oh, you have to help me finish this,” my mom says to me.

“No, Mom. You have it. It’s for you.”

It’s unnecessary to say she doesn’t know what this ritual means, either. There is bread, and there is juice. And that is all.

There is no place for my mom to sleep and no clothing but what she has on her back, and not even that, unless she rolls up her sleeve and realizes she is wearing a shirt. And there’s no disposable diaper under her pants unless she notices it when pulling it down to go to the bathroom. And there are no sugar packets or spoons or creamers that she has sneaked into her pockets, because she mostly fails to remember she has pockets.

“Where are we going?” she asks.

“To your room.”

“What?! I don’t have a room,” she says.

“Just follow me,” I say.

We walk.

“See Mom? Your room,” I say, pointing to the photograph of her that’s hanging outside her door.

“Who put that there?” she asks.

“I did.” I say.

“Oh, you did?” She is smiling playfully.

But her room is lost as soon as we enter it because the picture of her is gone from her mind.

We lay on her bed.

“Whose bed is this?” she asks.

“It’s yours,” I say.

“Mine?”

“Yes. See those pictures?” I point to Debbie’s needlepoints. Photos of the grandkids. “They’re yours.”

“Hmmm,” she says, but then closes her eyes. The pictures, the needlepoint, are gone.

On the bed, lying next to my mom, I call Kathy.

“Hi Mom!” Kathy says.

“Hi Mom!” my mom says.

“What did she say?” Kathy asks.

“Now wait,” I say. “Let’s try something. Kathy, say, ‘Hi Kathy!’”

“Hi Kathy!” Kathy says.

“Hi Kathy!” my mom says.

“See,” I say, smiling. “You just have to let her be a parrot.”

My mom chuckles.

We talk for a little while, and then we have the Jewish communion conversation. But it’s only Kathy and me talking about it, because the bread and the grape juice, out of sight, are long gone. As if they never existed.

After Kathy hangs up, my iPhone transforms from communication device to photo album.

“Look at this cute cat,” I say, pointing to a cat I’m looking after.

“Soooo cute,” my mom says, and coos a little.

I scroll.

“That’s Victoria,” I say, pointing to a woman with her arms around me, her face pressed to mine.

“Who’s that?” my mom asks.

“She’s my girlfriend.”

“Oh,” she says and looks away. Victoria disappears.

In the last 15 years I have brought no more than two or three girlfriends to her attention. This is a big deal.

We go back to the photo library, to more cats and small children. And then back to Victoria and me.

“Who’s that?” she asks.

“That’s Victoria,” I say.

“Who is she?”

“My girlfriend.”

“Oh,” she says. But it means no more than it meant the first time.

I love the picture I’m showing her, because we both look so happy.

“That’s Victoria,” I say again. “She’s my girlfriend.”

My mom says nothing.

One day, not all that long ago, she would have been very happy for us.

 

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Mother’s Day

I didn’t visit my mom on Mother’s Day. I had something else to do, and I couldn’t be in two places at once.

I figured I’d buy her a Mother’s Day card at Target that night and visit her the next day, on Monday. We’d celebrate then. It’s not like she even knows when Mother’s Day is.

When I’d taken her to the Easter service in April, she’d held the hymnal and turned the pages to the wrong hymns. I had to use my finger to guide her through the words of every song, so that she knew what we were singing, so that she didn’t turn the page too early.

“Do you remember Easter?” I asked her.

She looked at me quizzically.

“We used to go to church,” I said. “They always gave us flowers.”

She shrugged.

“Do you know what Easter is?”

She shook her head no.

“It celebrates when Jesus ascended to heaven. You know, after he died on the cross.”

A blank look.

“Do you know who Jesus is?”

“Jesus … Jesus…” she said. “Oh sure.”

But I didn’t really believe her.

Sometimes, she recognized a tune and started to hum it. That made me happy.

I thought about that on Mother’s Day night and didn’t bother to buy her a card. I realized it’s not that she doesn’t know when Mother’s Day is. It’s that she doesn’t know what it is. And no amount of explaining was going to help her understand.

She was standing in the hallway outside her room, talking to two ladies, when I arrived Monday after Mother’s Day.

“Oh … hi!” she said when she saw me.

“Hi, Mom.” I hugged her.

“Do you want to come with us?” she asked me.

“Sure,” I said. “Where are you going?”

“Oh, you know … ” she said. “But let’s put your stuff inside.”

As we entered her room, her friends walked away.

“Where are you going?” she asked, but they didn’t answer and she didn’t pursue it.

“Oh well,” she said.

I took her downstairs.

“I’ve never been here before,” she said as we entered the elevator.

We got off and walked to a lounge area where there were tables with chairs. I was carrying some coloring books and markers, and I put them on the table.

“What are we going to do?” she asked.

“Color,” I said.

She needed me to show her how to get the cap off of the marker and what to do with the marker. How to hold it.

“Color anything you want, Mom,” I said. “Anything on the page.”

She froze.

I pointed to Charlie Brown’s hat.

“Color this,” I said.

“This?” she pointed with the pen.

“Yes.”

“This?” she pointed again.

“Yes.”

She pressed the marker to the page, and the ink soaked into the paper.

“That’s right, Mom. Now move the marker.”

She made small, discrete motions, not fluid ones, and the color went outside the lines.

“You’re doing great.”

She kept coloring, but the activity seemed foreign to her.

“How can you tell what color it is?”

“The pen cap shows you the color of the marker.”

She didn’t understand.

We switched from the Charlie Brown coloring book to the book featuring Mandalas, and she started filling in little teeny dots with green color.

“I’m doing red?” she asked.

“No, Mom. Green.”

“I thought I was doing red.”

We kept coloring.

“You’re fast,” she said.

“You’re doing fine,” I said.

“Do you do this every day?” she asked.

“No.”

“I think it would be too much,” she said.

“Do you like it?” I asked.

“It’s okay.”

We continued for a while, and then she put down her marker.

“I’m tired,” she said.

We got into the elevator and went back to her room.

“Lay down,” I said, pointing to her bed.

She smiled.

I lay next to her.

“Let’s listen to music,” I said and opened the YouTube app on my phone. “I have a song I want you to hear.”

“Okay.”

“Listen, listen, listen, okay?”

“Okay, okay, I’m listening.”

An ad started playing.

“No, sorry … don’t listen to that.”

“What?”

“Just wait … okay, listen.”

She didn’t recognize the first few piano chords.

“Yuck,” she said.

“Just listen.”

“You must remember this … a kiss is still a kiss …”

Immediately she started humming.

She didn’t know the words, not most of them, maybe only one or two. But then Sam sang the verse many people don’t know, and she came out with a whole line, intact, a beat before he sang it.

“It’s still the same old story …” she sang, and then he sang it. Then he followed it with the next line, “a fight for love and glory,” and she hummed it.

Into the next song, sung by Doris Day, her breathing changed. Her head was on my shoulder, her arm around my stomach, her legs snuggled next to mine. She could have been my child or my lover. Or, I guess, my mother.

When I walked her down the hall for dinner, we were almost at the dining room when she stopped in her tracks.

“Hey,” she said, looking at me with longing. “I didn’t know you were Beth!” As if I’d kept it a secret from her. But she was so glad she’d learned it.

“Come here,” she said. “You can use this,” and she tried to get me to share her walker, to lean on one side while she leaned on the other, because I’m her daughter, and she wanted to share with me.

I was leaving her soon, and while I was so happy she’d recognized me, I was worried our departure would hit her harder than if she’d seen me as just a pleasant stranger.

Was I just a pleasant stranger when she’d let me show her how to color? Or when she’d nestled her body next to mine and fallen asleep with her head on my shoulder?

I want to say I was her daughter then, for sure, but I can’t say anything for sure. She is free with her time and easy with her affection, indiscriminate when it comes to her relationships. She could have known me forever or have just met me, and it would likely have made no difference in how she treated me.

Sad, I thought.

But only sad for me.

She gets to love without regard to the object. Without barriers, without end. She can put her head on someone’s shoulder — anyone’s shoulder — and fall asleep. She can get comfort from the world. She can have endless love.

Not such a bad fate after all.

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