Carmen

Carmen* is sad.

She’s been looking that way for weeks now, maybe even for months. She doesn’t smile when I get her attention like she used to. And she almost never looks up.

Yesterday, I saw her daughter Bianca* as I was boarding the elevator at the Hebrew Home. I walked her to her mother’s room, on the same unit as my mom’s.

“She’s like this all the time,” Bianca said, gesturing toward her mom, who sat on a chair inside her room, that same sad expression on her face. Maybe it’s not accurate to call it sad. It’s more like lost, her eyes not connecting to the outside world but looking inward on an unfamiliar terrain that’s baffling in its foreignness. And there can’t be any comfort in that.

“That’s mommy now,” Bianca says, “all the time.” She’s looking down.

Carmen had entered the Hebrew Home at about the same time as my mom, over three years ago.

“Hi, hi, how are you?” We would all beam and greet each other whenever our paths crossed, which was frequently, as whenever I was there, Bianca was, too. She was at Hebrew Home every day, or almost, as she lives in Riverdale herself. She spent almost all of her free time with her mom.

Within weeks, Carmen and my mom, recognizing each other from their previous meetings, came to believe they had shared a decades-long history.

“How are you?” Carmen would smile widely, as if seeing a long-lost friend, and my mom and she would break off from Bianca and me and talk to each other.

“We used to work together,” my mom said, and Carmen nodded vigorously in agreement as they both basked in a sense of recognition based on an invented past. Bianca and I would giggle.

Within a few months, Bianca moved Carmen onto a different unit.

“It’s much smaller,” she said. “And the residents get more attention.”

Eventually, though, Carmen was moved back to my mom’s unit.

When I saw Bianca yesterday, she was doing her mom’s laundry. For three years, every week, she’s been doing her mom’s laundry.

My mom’s clothes go through the industrial washers and dryers that mix the clothing of hundreds of residents. Her pants are stained with bleach and the colors of her blouses are dull. But not so with Carmen. She always looks well-groomed.

After seeing Bianca, I take my mom to the concert. The singer has a strong voice, and he belts out tunes as he walks up and down the aisles between the wheelchairs, leaning over to take the hands of audience members.

“I just turned 75,” he says, and we are surprised, because he seems younger than that. He is one of the most active performers we’ve seen at those concerts. And he is only about five, or maybe seven, years younger than Carmen, who is sitting in a chair in front of my mom.

When he asks how old the folks in the audience are, I hold my mom’s hand up in the air and shout, “89!” She repeats it.

“89!”

Claire, a staff member, looks surprised to learn my mom is so old.

For some reason, my mom is walking better than she has in a long time, maybe because she’s had physical therapy, maybe because of her walker, which she isn’t using that day as she has forgotten it somewhere, and I have forgotten it as well. It is as if physically she has skipped backward in time.

And her conversation, pared down, is nonetheless still lucid at times. It is as if she has learned what is important to say and let go of the rest.

“He’s good,” she says, gesturing toward the singer.

“Yes,” he is.

There’s something very simple and easy between us, and between my mom and the world. It’s a lightness, a kind of freedom. Almost a transcendence. Her spirit is present, and at moments, it’s soaring.

Carmen sits alone as Bianca finishes her laundry. I can’t see her face, but from her body language, I can imagine what it looks like. The 75-year-old singer kicks up his heels.

Death is the great equalizer. But advancing age, and Alzheimer’s, are lands of persistent inequality.

_____________________________
*Not their real names.

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Coloring

My mom was such a simple person — on the outside. She never lied. Or cheated. Or stole. Or smoke or drank, for that matter. She believed in God and prayed, and she loved her children. She was nice and polite and kind. She never said a mean word to anyone.

But behind people’s backs, she wasn’t always so nice. Sometimes she would gossip, and she would often complain about people. She distrusted, even disliked, people who spoke or thought well of themselves. In her mind, confidence was the same thing as arrogance, and she hated arrogance.

My mom never believed she was worth anything or that she was capable of much. And yet, she believed she was good. Strangely enough, she seemed to think that seeing herself as worthless was what made her good, as if her low self-esteem was an essential part of her goodness.

My mom was a very complicated woman.

I brought a coloring book to the Hebrew Home last Saturday. Mel had given it to me as a gift for myself. It was an adult coloring book.

“Wow,” my mom said. “What’s this?”

The pages were full of mandalas, intricate kaleidoscopic drawings with hundreds, even thousands, of tiny shapes to color in.

“It’s a coloring book,” I said.

“What do we do with it?” she asked.

“Color,” I said, taking the colored pencils out of my bag.

I handed her a pink pencil.

She looked at it quizzically. With a quick hand motion, I showed her how to color. She picked it up right away and started to color.

Sitting next to her, I took a pencil, reached over, and began coloring in the shapes on the side of the picture that I could reach, being careful not to get in her way.

Within seconds I knew why the coloring hadn’t caught on for me when Mel had first given me the book almost a year before. The hard feel of the pencil and scratching sound were anything but relaxing. And the compulsion to color every little shape a different color made the activity a torturous kind of work.

I watched how my mom moved her pink pencil. The color came out so light you could barely see it.

“Is this how I’m supposed to do it?” she asked.

She’d managed to color within the lines, sort of, but didn’t fill the whole space. As she continued coloring, she moved to the shape next to the one where she had started coloring, and then the space next to that. It wasn’t at all how I thought these mandalas were supposed to be colored — every shape carefully given its own unique color — and yet it was just fine.

“You got it, Mom,” I said.

After a little more pencil scratching, I took out the crayons. There was no need for the precision of pencils. This was meant to be a relaxing activity, and the feel of crayon against paper is far more relaxing than pencils.

I gave her a crayon.

“Ooh,” she said. “This is so nice.” She liked how dark and vivid the color was, especially when compared to the lightness of the colored pencil.

Sitting next to each other, we passed the minutes filling the drawing with color.

She began to color over the spots that were already colored, and then seemed to think she could transfer the color from the page to her crayon, as if she were coloring the crayon.

“Let’s get this color,” she said, holding the crayon over a spot already colored.

I tried to explain that the color went the other way, from crayon to paper, but I soon gave up. She wasn’t getting it.

When we finished the entire drawing, I told her I had to leave.

“No, no, no, no, no,” she said.

We went to her room so that I could use the bathroom.

“You are not leaving,” she said.

“I have to,” I said.

When I got out of the bathroom, she went in. She closed the door and started weeping loudly, continuing for several minutes, til she flushed and washed her hands.

I sighed and lay on her bed.

“Come here, Mom,” I said, when she got out. I asked her to lay down next to me.

“I hate it when you leave,” she said. “It’s terrible.”

“I know,” I said. “It’s hard for me, too.”

“But do you go into a corner and cry your eyes out?”

The part of my body that was touching hers shrank, just for a moment. As if wanting to escape contact with her.

“I want you to stay, and you never, ever will,” she said. “I’ll never see you again.”

“You’ll see me next week,” I said.

She looked at me and frowned, deeply dissatisfied.

I could never give her everything she wanted from me when I was younger, enough love or enough attention or enough obedience. And it would make me so angry when she would lead me again and again into the land of guilt.

I had hoped she’d lost her way, that Alzheimer’s had destroyed her internal compass, and for the most part, it has. But I guess at times she can still find her way there, and point me in that direction.

I know I’m not supposed to want her to forget, but sometimes I just do.

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L’Shanah Tovah

“HA-va Nagila, HA-va Nagila, HA-va Nagila Ve-nis mech-A!”

The musician was singing with energy and joy, and people were getting up to dance.

“What is he singing?” my mom asked.

“Hava Nagila,” I said.

“What does that mean?” she asked.

“I don’t know,” I said.

I started clapping. She smiled and followed along.

We were at the Rosh Hashanah concert at the Hebrew Home. The singer wasn’t bad, but he wasn’t good, either, and his phrasing was terrible.

“We’re going to do Neil Diamond’s most popular song,” he announced, his booming voice reaching every corner of the room, urging us all to sing along. And yet, after he sang the words, “Sweet Caroline,” he mumbled the rest of the chorus. I couldn’t figure out what words to sing or how to sing them.

But it didn’t matter. I was having a great time, and so were a lot of other people. So, I think, was my mom.

She was raised Lutheran and used to worry about the fate of people who didn’t believe Jesus Christ was their savior. But that day, she was Jewish. No, she was nothing, or maybe she was everything. In any case, she was there.

And so was I.

Practically every week, I take my mom to the Hebrew Home concert. I try to be present. But too often, I’m only half there.

I may be holding my mom’s hand, and clapping and even singing, but a part of me is worrying about how she’s doing or how I’m doing or what the weather is doing or what I will be doing at my job the next day.

But not on this Jewish New Year. I was clapping and moving as if there were no other place I could possibly be.

When I had arrived earlier that day, my mom was curled up on her bed.

“What are you doing in bed, you lazy bum?” I asked, and leaned over and kissed her on the cheek.

She looked up and smiled, and tried to formulate a sentence. She couldn’t. I’m not sure she knew who I was. That lasted a minute or so.

I’m seeing the disease progress.

Soon she was back with me, though. She knew me and within a few more minutes could speak more coherently.

On November 1, my mom will turn 89. Given my schedule and the demands of life, I could probably count how many times I will likely see her again, and how few times she will be mentally present. Some days it seems like we’re reaching the end of the countdown.

But then I concentrate on the moment, and it feels as if there is no end in sight. Only new things are on the horizon.

Old resentments I felt over how she treated me in my childhood drop away as we spend more time together. Regrets and guilt she may have had over my life struggles appear never to have existed. Ours is a relationship constantly re-forming, and the opportunities are endless.

It feels like a New Year every second, when anything can happen.

Many thanks to Ariel and Shya Kane, for helping me to see my relationship with my mom in this way.
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Being There

“Is my butt bigger than that girl’s butt?” my mom asked, pointing at a passing woman.

We were in the Hebrew Home sculpture garden, celebrating Grandparents Day with a couple hundred residents and guests.

I almost knocked us both over trying to get behind my mom to look at her butt, so that I could answer the question. I don’t know where my head was.

Obviously, I should have just said, “No, of course your butt isn’t bigger than that girl’s.” But for some reason, I didn’t.

I haven’t been thinking very clearly, or feeling very present, when I visit my mom these days.

More and more of what she says just doesn’t make sense.

“I lost it,” she said a little later.

“What did you lose?”

“The … thing … smitchit.”

“You didn’t lose anything, Mom.” I didn’t know what she was talking about. “You must have left it in your room.”

“Okay,” she said. “But now we can’t sing.”

“Sing? What do you mean?”

“What?”

“You said we can’t sing. Why can’t we sing?”

“Well, how can we do it without that?”

I shrugged and tried to let it drop.

But it’s hard because more and more, our conversations sound like this. Words that aren’t real. Sentences that break down midway through a thought. Thoughts that bear no relationship to what’s happening around us.

My friend Nancy’s two-year-old daughter Rayne is making new neural connections every second of every day. Her hungry brain gobbles up whatever she hears. Everything Nancy says matters so much, because this wise and growing child is investing it with meaning.

My mom forgets everything I say. And nothing has any meaning.

I’m resisting this disease again, just like I did in the earlier stages, when it started to progress from mild to moderate. My mom was reverting to the past, asking questions that were no longer relevant. I wanted to keep telling her the truth, even when the truth was painful and she didn’t need to hear it.

“How is my mom?” she would ask.

“Grandma died 45 years ago.”

She grieved it anew each time I told her.

I wasn’t trying to be cruel. I just wanted her to continue to live in the real world. I wasn’t ready to give her up to Alzheimer’s.

But I realized there’s no point in fighting Alzheimer’s. And then I learned that I didn’t have to give her up if I just let her take the lead.

“How is my mom?” she would ask.

“She’s great.”

“Oh, I’m so glad.”

“Me, too. She’s doing remarkably well.”

And that was just the beginning. I went along with every scenario her mind could dream up, becoming a master at improvisation. Escorted by Alzheimer’s, she took us to places we’d never been.

It helps me to remember that.

Now we’re approaching another bend in the road, and I don’t want her to leave me behind. Resistance is pointless, and painful, and lonely. For both of us.

I’ll learn baby talk if I have to. I’ll rejoice when she makes no sense and repeat her made-up words. I’ll laugh with her and cry with her, and we’ll dance in our seats. We’ll sing until the words stop coming, and then we’ll hum. And nothing will ever have meaning again. But I’ll be there, wherever she is, and so will she, until she physically can’t be there any more.

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Some Days

The bathroom door opened, and my mom stepped out. Her face lit up when she saw me.

“I didn’t know you were here!” she said with excitement and affection. She stepped closer and hugged me, resting her head against my chest.

I blinked for a moment, mildly perplexed. And then I let it go.

Our visit had started more than 90 minutes before, when I found her in the TV room, furiously angry.

When she saw me enter then, she gave me a look that told me I’d better get my ass over there. I sat in the empty chair next to her.

“Hi, Mom,” I said.

“I’m going to kill them,” she said, ignoring my greeting and gesturing with her head toward two women sitting a couple of seats away.

“That seems a little extreme, Mom.”

“No,” she said. “They’re old enough…. they should know… not to do this!”

“What are they doing?” I asked.

“Oh, you know,” she said. “They’re just … blah blah blah.”

She was angry that these two women were talking nonstop.

“Let’s go, Mom,” I said.

“Go? Go where?”

“To your room.”

“My room? I have a room?!”

I led her out of her chair and she glared at the ladies. We left the TV room and started to walk down the hall.

“I’m going to blow… blow their heads off,” she said. “Ooh, I’m so mad.”

I kissed her head. She didn’t respond.

She was still holding onto the anger when we entered her room and got onto her bed. Then we called Kathy and told her.

It’s been more than a year, maybe two, since I’ve seen my mom carry a thought from the TV room down the hallway and into her bedroom, holding onto it all the way. She’ll drop her granddaughter’s names well before a clock’s second hand can make a full rotation. But this anger: she couldn’t let it go.

Kathy and I joked with her about it.

“You’re acting like a five-year-old,” I said, laughing.

“Sounds like a three-year-old to me,” Kathy said.

She had a look of mock surprise on her face, and then she laughed. But she was looking away from me, her eyes settling on the wall.

“You weren’t even happy to see me when I got here,” I said.

“That’s right,” she said, not only like she meant it, but as if the sentiment was absolutely correct.

Then she laughed, and Kathy and I joined in. But she didn’t soften completely.

When we ended the call, I opened the YouTube app on my iPhone and played a song sung by Engelbert Humperdinck. My mom has an MP3 player in her drawer with several of his songs on it, but she doesn’t know it’s there. Or even what it is, let alone how to use it. So we used my device.

She used to listen to Engelbert in the 1970s, when I was growing up.

“Those were the days, my friend, we thought they’d never end…”

He sang and she hummed along.

“You know this one,” I said.

“Yes,” she said, and relaxed a little.

I let YouTube choose the next one and the next and the next, and we heard Engelbert sing about a man without love and a man and a woman and blue Spanish eyes.

Then she closed her eyes and got a little sleepy.

“Do you know this one?” I asked, as I switched from Engelbert to Tom Jones. She didn’t, but she seemed happy to listen.

She just took it all in.

“Ooh, I think I have to go to the bathroom,” she said.

My ears perked up as if I were a dog hearing a whistle. I remembered the week before, when she’d waited too long and peed in her pants.

“Okay, Mom,” I said. “Let’s get you up so you can go.”

I helped her lift herself off the bed, and she shuffled into the bathroom.

She was in the bathroom a long time, long enough for me to listen to two Leonard Cohen songs.

At one point I turned the music down, thinking I might need to hear her in case she had any problems. Sometimes she’ll have trouble with the light, or she’ll tell me she sees blood, and I’ll go in and check. Or she’ll need help flushing the toilet.

But the moment I turned down the volume on my iPhone I could hear her humming away. She was totally engrossed in her bathroom ritual. So I turned the music back up, not all the way, and the chords of “Hallelujah” harmonized with her humming.

When she was finishing up, I was at the bathroom door. She opened it, and her hair was neat. She had probably used her toothbrush to comb it. I’d noticed earlier that there was no comb in the bathroom.

“Oh, Beth,” she said. “I didn’t know you were here!”

It broke my heart a little that in that moment, just before I was getting ready to leave, my mom was light and happy and wanting to see me. But I was glad, too.

I walked her back down to the dining room, where I led her to believe I would join her for dinner. But of course I didn’t; I had to go home.

“No… don’t go. Please don’t go,” she said.

I promised I would be back very soon.

It must be so goddamned hard to live in a nursing home some days.

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Conversations

When I arrived at the Hebrew home at 3 PM, I found my mom in bed under the covers.

She was facing the window, so she couldn’t see me as I entered. Without announcing my presence, I sat on the bed alongside her and touched her hair.

She turned and saw me, and smiled brightly.

“Beth,” she said.

“Hi Mom,” I said.

I moved off the bed and sat in the rocking chair right next to it. I kept caressing her hair.

“I wanted to call you so many times,” she said. She was smiling. “I didn’t know you were coming today.”

“I know, Mom. I didn’t tell you.”

We sat like that for a few minutes, my fingers touching the waves of her thinning hair, fluffing them out. They were pressed against the back of her head from the pressure of laying on the pillow.

“You don’t usually… you don’t do this to my hair,” she said.

“No, I don’t,” I said. “Do you not like it?”

“Yes, I do like it,” she said.

“What are you doing in bed?” I asked.

“Oh, I don’t know,” she said. “Just… just…”

“Tired?”

“Not … no. I don’t think so.”

“Bored?”

“Hmmm… maybe… I’m just…”

I let it drop. She was fully dressed, so I knew she had been up. She didn’t seem sick. She must’ve just wandered back to her room after lunch.

“Come on,” she said. “Don’t you want to get on the bed?

She moved over, and I lay down next to her.

“What is this place?” she asked. “Is this your place?”

“It’s your place, mom.”

My place?”

“Yeah, look at the pictures on the wall,” I said. “They’re yours.”

“Oh,” she said. “That thing is mine?”

She pointed to the needlepoint Debbie had made and framed for her twenty years ago.

“Yes,” I said.

Her feet were cold and she wanted to wedge them under my legs.

“You’re so warm!” she said.

“It’s very hot outside.”

“Outside?!”

I’m not sure she knew what outside meant.

“Yes. Ninety degrees or more.”

I’m pretty certain she had no idea what that meant.

I suggested we call Kathy.

“Which one is she?”

“Your daughter,” I said.

“What?”

“Your oldest.”

“Oh, you call her. I can’t.”

“We’ll both call her.”

We used my iPhone and put her on speaker.

“Hi Kathy!” my mom said. As if she knew who she was.

We talked for almost 30 minutes.

We talked about the bean salad Kathy was making for her party, with black beans, and my mom said, “Yuck.” We joked about how all the guests would be farting. My mom laughed and laughed.

Then we sang the bean song (“beans, beans, they’re good for your heart…”). She remembered part of it and sang what she could. Then she laughed.

Kathy told her about the ants she had found in her basement earlier that same day. Kathy and I happened to be talking on the phone when she’d seen them, and she had vowed to call Terminix. Mildly annoyed by her distraction, I had jokingly tried to sympathize with the ants, saying maybe God had sent them (Kathy has become very religious these days).

“Don’t kill them!” I had told her and went on to quote the one bible verse I know about the advisability of entertaining strangers (“for by so doing, some have unwittingly entertained angels”).

“Beth thinks the ants are angels,” Kathy told my mom, “but ants don’t have wings.”

“No, they don’t!” my mom said and laughed and laughed.

Then I started to sing the ant song.

“The ants go marching one by one … hurrah, hurrah.”

Kathy laughed, and my mom started to hum it.

“You remember it!” I said.

We sang a few more verses, my mom not getting the words right, but following the tune. Then we played with the words and found our way back to farting (or, actually, poop), and we all laughed.

Kathy’s daughter Kaitlin was home from her summer internship, but she wasn’t going to the party where the bean salad would be served.

“She’s going to a wedding,” Kathy said.

My mom said she wanted to go to a wedding, too – no, not just go to one, but have one of her own.

“You’ve already done that, Mom,” I said.

“So what!” she said and laughed.

“Well, I guess you could do it again,” I said. “But you have no one to marry.”

“I don’t care!” she said, smiling. She still wanted the wedding.

“Okay,” I said. “It will be a very boring wedding with no groom or church or reverend or even cake.”

She laughed.

“No…?” she started and paused.

“No groom or church or wedding or cake.”

She smiled and reconsidered. She wasn’t sure she wanted it after all.

She was snuggled up next to me when we hung up the phone, and the pillow was pressed against both of our heads.

It was like many of the conversations I have with my mom these days, where I say yes to every silly thing she says and she reciprocates, because she can still do that. She can still say yes.

And that small bed becomes a site of creativity and play and love and infinite possibility. We live in that moment, and we don’t need to go anywhere.

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Sculpture Garden

I don’t always know what to do with a beautiful June day, when the sky is deep blue, the air is fresh, and the sun is shining. But when I’m at Hebrew Home, the best way to spend it is in the facility’s sculpture garden with my mom.

The works come from famous artists, and they’re abstract, arresting, stark, made of stone, or metal, or wood or other natural materials.

“What’s that?” my mom asks, pointing to something made of wood and metal, looking both like a tree and an animal.

“It’s a sculpture,” I say.

“What’s a sculpture?” she asks.

“It’s …. a work of art.”

“Oh,” she says. “Where is its head?”

“I don’t think it has one.”

“Well, as long as it doesn’t come over here,” she says. “It’s not going to, is it?”

“No.” I shake my head.

“Good.”

Appreciation of art was never one of my mom’s strong suits.

The sculptures are arrayed on a lovely grassy sort of knoll along the Hudson River, and there is a path where we can walk, with trees creating nice shady spots.

We sit in lawn chairs in one of these spots, gazing at the river and the trees and the vegetation. This is the kind of art my mom appreciates.

“It’s so beautiful here,” she says. “Look at that … that … what is it called?”

“A tree?” I ask.

“No, that thing up high, next to the tree.”

“That’s a building off in the distance.”

“That’s a building?”

I nod.

A boat sails past. We can see it for a moment, but then it is shrouded by the trees on our side of the river.

“Oh, if I could cut those trees down, I would.” She starts to motion with her hands, as if cutting with a large clipper. “Just get a … a … and cut’em down.”

I smile.

“Look at … oh that water is moving. Moving and moving.”

The waves in the river appear calm, but if you look closely, the sun’s reflection is jumping off of every little ripple, glimmering, sparkling. I wouldn’t have noticed it if she hadn’t pointed it out.

“Those things over there,” she says, pointing. “The bays, the chays, no … chairs.” She starts laughing.

“You mean the benches?”

“They’re benches? They don’t look like benches.”

“Yes, they are.”

There’s an unusual tree in front of us. It has a flat top.

“Get rid of that yucky tree!” she says, almost gleefully.

“Nothing wrong with that tree,” I say.

Less than two minutes later, she says, “I like that little tree.” She’s incredulous when I tell her she just said we should get rid of it. Then she laughs.

We sit for more than an hour, and the conversation repeats itself. As if the words are hanging in the air above us, swirling around, and she’s plucking them down and throwing them back, and plucking them back down as they recirculate in an endless loop. But they are constantly new to her. To me they are old, and I am bored. No, I am past being bored.

“You’re staying all night, right?” she asks. It’s a question she asks me every time I visit her.

“Of course,” I usually say, even if I know I’m leaving in two minutes.

“I can’t. I have to work tomorrow,” I sometimes say. That disappoints her, but these days she usually accepts it.

But this time, I feel like saying something different.

“Who’s going to take care of all the animals if I stay overnight?”

I don’t have any animals. But I say it anyway. It makes almost no difference what I say.

“Oh, right,” she says. “What kind of animals are they?”

“Cats,” I say.

“Oh yes. Isn’t there someone in our family who doesn’t like cats?”

“Dad. He didn’t like cats.”

“Does he still not like cats?”

“Umm … Dad died.”

“He did?” Incredulous again, but with a serious look on her face. “I didn’t know that.”

“You forgot.”

“No, seriously,” she says.

“You seriously forgot.”

I no longer have to be so careful with what I tell her, because even if it upsets her, it will only last a second.

I can almost experiment in our conversations, knowing I’ll have another chance to tell her something, and another, and another. An infinite number of chances, it seems.

Earlier that day, in her room, she broke into spontaneous laughter. Just as quickly it turned to tears.

“I feel so awful,” she said, weeping.

“What happened?” I asked.

“I don’t know,” she said, and then the tears dissolved instantly.

Within seconds, she’d forgotten she was even crying.

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