She slivered off wafers with the plastic knife they included and ate them one at a time. The community room, which my mother had begun to call the Plant Room, contained a television, a plant stand full of orchids, a green couch, that fake Persian carpet and two rocking chairs. A long swatch of black paint on the floor guarded the sliding doors to the back garden. After a certain point in the progression of the disease, the black swatch was often perceived as a black hole into which you would fall and from which you would not return.
That was what they told me, anyway. “It takes a while to get to that point,” they also told me, reassuringly.
But in the last month I had come upon my mother standing three feet away from that swatch of black paint, looking at those locked doors, with their view of the outdoors, the world beyond this one room. I had seen my mother’s body physically leaning toward those doors, her arms reaching for them, reaching for the outdoors that all her life she had loved. And I had watched her look down at that black paint, regarding it in fear.
No one was ever in the Plant Room except her, and she was almost always in there. Once in a while someone poked his or her head around the doorway—“How you doing, Miz Winter?”—and we both nodded. We were the two Miz Winters.
“‘The white Josh Gibson,’” Tamar said, in clear, calm and measured tones, just like the tax man. “Who is Babe Ruth?”
When I was a child and my mother and I used to watch Jeopardy! together, I would sit on the couch next to her, shouting out answers that were almost always wrong. Her? Nothing. Until now, when she wasn’t even looking at the television. She was focused on the little white box of fudge, slivering herself off another delicate portion.
“Josh Gibson was a slugger,” she said to the fudge, pincered between her thumb and finger. “He could catch too.”
The fudge said nothing but she shook her head as if it had asked her a question.
“No,” she said. “Gentleman’s agreement. Criminal.”
None of what she said made sense, but she was done talking. She wrapped the remaining chunk of fudge up in its tissue paper, laid the plastic knife next to it and closed up the little box. Then she handed it to me and I handed her the book I had brought. Fudge for book. An even trade-off.
“Charlotte’s Web,” I said. “In case it looks familiar.”
It was one of the books that had lined the walls of my room in our old house and spilled out into the rest of the house. One of the books I had read over and over and over. When I was growing up, Tamar had given me a book for every birthday and every Christmas and every first day of school and every last day of school, books that she thought I would like: about pioneer girls, children who lived on their own, shipwrecked families, solo adventurers. She knew the kind of book I loved and she knew that hardcovers were what I loved. When it came to books for me, my mother did not stint, and those books were all that she had saved for me from the desecration of the house. My childhood books, Dog’s ashes and that single duct-taped-shut shoebox that I had not opened.
Tamar herself owned exactly one book when I was growing up: a tattered paperback of Jonathan Livingston Seagull. For as long as I could remember, that book—that embarrassing self-help-ish book with the picture of the seagull on the cover—sat on the shelf above the woodstove in the kitchen. Now it sat between two bookends on the windowsill of the unopenable window in her room at the place where she lived. Besides her clothes, it was the only thing she brought with her from Sterns.
When I hauled the boxes of books into the cabin, I opened them up and spread them out in the middle of the room. All the books of my childhood, each inscribed To Clara, with love from Ma. I stacked them up right there on the floor. 6 stacks x 4 stacks = one coffee table made out of books, with the unopened shoebox buried in the middle.
Now, week by week, I was giving them back to her. As my coffee table grew shorter, my mother’s books grew taller. She piled them up beneath the window, on the nightstand, once in a while under the bed. Unruly piles, just like the firewood she used to chuck onto the porch in an unorganized heap.
“Thank you,” she said, and she placed Charlotte’s Web in the exact middle of her lap, unopened.
* * *
The place my mother moved herself into, the day after she handed the keys over to the Amish family, was a place where if she fell, someone would know immediately, and if she had a bad dream and was crying in the middle of the night, someone would know that too. Where if she needed medicine, someone would give it to her, and if she wanted to watch Jeopardy! she could. No questions asked.
Where she lived now there were few locks. She was not strapped to a bed or tied to a chair. She was free to go where she wanted within the confines of the building, and where she wasn’t supposed to go she wouldn’t go anyway, because of the black swatches of painted floor that she wouldn’t step over for fear of the bottomless black holes.
Although how did they know if bottomless black holes were what she thought they were? How could anyone who was not her know exactly why she avoided them?
My mother was never coming back.
Sometimes I said that out loud. When I was driving I said it, to myself and the windshield and the seat belt and my two hands on the steering wheel.
“Your mother’s never coming back, Clara.”
A six-word sentence. A whole story in six words. Like the kind of assignment the me who made her living writing words for other people would give herself if she felt stuck. At first I tried variations, like Ma’s disappearing or Ma’s never coming back. But those were too hard to say. Ma was the word I had known my mother by my entire life. Not Mom or Mama or Mommy. Not even “my mother.”
Just Ma.
So I went back to the original sentence, which was an exact quote from the shaven-head doctor in his white doctor coat and in whose office I sat, surrounded by diplomas and plastic plants. This was the day after Tamar and I had sat there together. I had made a solo appointment, so as to get more information. All the information I could, on my own, straight from the horse’s mouth, as the saying went, although did horses talk? They did not. Not in words, anyway.
“Your mother’s never coming back, Clara. Early-onset is particularly cruel because it strikes so much younger than the typical patient. It seems to go faster sometimes too, probably because early onset is often not diagnosed until the later stages. We hope that won’t be the case with your mother, of course. That’s rare. That would be the worst-case scenario.”
He pushed a box of tissues across the table and my head filled with images of other people, dozens of them, who must have come before me and sat in the same chair that I was sitting in. Your mother’s never coming back, Clara began a slow scrawl across the bottom of my brain. A wandering-minstrel-without-an-instrument of a sentence.
“Isn’t there some kind of medication that can help?”
“To slow the progress, possibly, but stop it, no.”
“Aren’t there any studies she might be eligible for, clinical trials where she could get new medicine that’s not FDA-approved yet?”
“Not at this time.”
My mind kept coming up with reasonable questions and I listened to myself say them, one after another. Part of me admired the reasonableness of the young woman sitting across from the doctor. Look at her, her hiking boots laced with red laces, her vintage Future Farmers of America jacket, the lavender streak in her brown hair. She was so rational! Logical! Articulate! Concise! Self-restrained! Exclamation marks scrolled themselves along the bottom of my brain. Little Hitler youths out for a march. Hitlerjugend.
“The brain affects everything about the body, so there are physical symptoms as well. Large and small motor skills. Stumbling, falling. Et cetera.”
“How long will it take?”
Until what, Clara? Until she couldn’t drive any longer? Until she couldn’t live alone? Until she needed a personal-care attendant? Until she was in diapers? Until she forgot how to feed herself? Until she refused food and drin
k? The words “care facility” exploded into huge boldface letters in my head. CARE FACILITY CARE FACILITY CARE FACILITY CARE FACILITY.
Clara.
Shhh.
I came out of that meeting and I spoke about it with no one, not even Sunshine and Brown. Not Burl Evans, the postman, who must have wondered when suddenly the name Winter was painted over with Beiler on the mailbox at the end of the driveway. Annabelle Lee, the choir director, who was my mother’s only real friend, and William T. Jones and Crystal already knew, but I did not talk about it with them either.
My mother made me promise to be silent, and silent I would be.
The only ones I talked about it with were the doctor and the nurses and the aides and the therapists, because I had to. Her next of kin was me, her only kin was me, and what that meant was that it was all up to me: power of attorney, legal guardianship, health proxy. All those terms that no one wanted to hear or think about because were they ever to become necessary it would be many decades hence and only to other people. People who were not you. People who were not your mother.
“Things that you want to say to her, say now. Even if it seems like she’s not there, like she’s not listening. Say what you need to say anyway.”
Sylvia, the kind nurse with the encouraging smile. She took me aside in the hall after the first of our monthly Life Care Committee meetings, in which we—the doctor and nurses and aides and I—went over details of my mother’s care. Clara, can I talk to you for a minute? Words that lead nowhere good, ever, but everyone stops for them anyway. I leaned against the cool tile wall and listened as she told me that the one rule was that While there will be good days and less-good days, over time the condition only worsens and If you have issues or conflicts that you need to resolve, do it now and The same thing applies to happiness, to joy. Share them with her, but do it now.
How, though? Too many of the words between my mother and me were hard words, words with tall boots, stalking across the bottom of my brain in ugly uppercase.
“You mean like secrets? Secrets I never told her?”
“Maybe,” Sylvia said. “But when it comes to secrets, particularly long-held secrets, consider carefully whether her knowledge of them would ease her mind or yours. You don’t want to unburden yourself only to shift that burden to the listener.”
Ma. Ma. Ma. Ma, look at me. Ma, remember me. Could we do it? Was it too late?
“Okay,” I said to Sylvia, that dumb word okay, but Sylvia smiled and I smiled back at her, squashing the questions that I wanted to ask, that I needed to ask in order to get the answers that I would need in the future. The future was steamrolling down upon us—second by second we were living in a future that didn’t exist a minute ago—and my mother was disappearing. Was this the way being on Jeopardy! felt when no matter how fast and hard you pressed and shook and clicked the buzzer, it didn’t make a sound?
* * *
It happened too fast and it was too big—way too big—and too much was unsaid and wrong between my mother and me before she started to disappear. Too much had been left untold and now there was too much to tell, the words locked tightly within us both, tangled up with the don’t-tell-anyone and the your-mother’s-never-coming-back. A game of Twister gone awry. Bruises and torn ligaments and broken bones.
A year went by of this new life. Visits with Tamar, Life Care meetings, the drive back and forth from Old Forge to Utica that the Subaru and I knew by heart, evenings on the porch with me and Jack Daniel’s and the solar fairy lights glimmering from the white pines I looped them around, evenings when I thought about my mother, what I had and had not done.
I had moved back in early September and now it was early September again and the light was fading. The sun came up later and went down earlier and the bitter winds of winter were nigh upon us. Oh, don’t be so filled with dread, Clara. Don’t be such a monger of doom, a predictor of pain and suffering. Winter is not a time of death; it’s a time of rebirth. Of hibernation. Of fallowness, that fertility may spring forth again come the thaw. The Greek chorus behind me, full of scorn at my fear and loathing of winter.
“So how’s The Fearsome?” Brown asked. “When’s she coming back, anyway?”
I had told Sunshine and Brown, in the face of their repeated questions about my mother, that she wasn’t around. That she had decided to travel the world, go wandering through Europe and Asia, all the places she had never been, a solo traveler on an odyssey. Lies upon lies. Once conjured, lies feed upon themselves. They get greedy. At some point they turn real and take over, tumors muttering, Feed me feed me feed me.
“Maybe never.”
“But isn’t she weary of wandering yet?”
Brown was fond not only of exclamation marks but of rhyme and alliteration. In the one literature class we had taken together back in college—Chaucer, Milton and Shakespeare, which ran together in my head, then and now, as chaucermiltonshakespeare—that class in which we all sat together next to the giant window, he used to copy down his favorite examples from the passages the professor read aloud. It was a fall of bright skies that year, and sunshine, the literal form of it, spilled through that window and set Sunshine’s red-gold hair on fire, metaphorical fire. Her hair alight like the New Hampshire trees in the fall, on the mountains visible beyond the classroom.
“It’s hard to imagine The Fearsome anywhere but Sterns,” Brown said. “When I think of her I picture her eating out of jars and chopping down trees. Not presenting her passport to some grim Eastern European customs officer.”
“She never chopped down trees, Brown,” I said. “She split logs that other people delivered to us into woodstove-size chunks. Big difference.”
It was a difference that Brown and Sunshine didn’t care about. When they had first met my mother, lo those many years ago at college, they formed an image of her as a woodswoman who spent her days up in the Adirondacks chopping down enormous trees. A female Paul Bunyan. That was long ago, when Sunshine and Brown were new to a rural landscape, when they ferried back and forth from Manhattan and Boston, respectively, on school breaks. Before the three of us spent the summer before junior year together, living and working in Old Forge, which was when they fell in love with the Adirondacks. They were nothing like me, a country girl raised by a country woman.
“Semantics,” Brown said.
“It is not semantics. There is a profound difference between chopping down a tree and splitting chunks of that tree into small pieces suitable for a woodstove or a fireplace. Which you should know by now, seeing as you just had three full cords of fireplace wood delivered and stacked.”
I was strewing conversational bread crumbs, leading them away from the forest, away from the subject of my mother. But they would not be deterred.
“Seriously, Clara. How is she?”
“Seriously, Brown, she’s a year older. It was just her birthday.”
“No! For real? Are you kidding?”
Brown and Sunshine were birthday people. They used to call me wherever I was, back in the nomad days, the Winter of Nomad-istry, as Brown used to say, and sing “Happy Birthday to You” into the phone. If I was anywhere within driving distance, they would have a party for me. Cake, candles, special handwritten, rhyming poems full of alliteration.
“Don’t worry about it.”
“But why didn’t you remind us? We could’ve called her or something. Geez.”
I shrugged. A two-shoulder shrug—quick up and quick down—which was what you did when there was something enormous you hadn’t told your two best friends about and too much time had passed and all the words were locked up tight and would remain so, in this time of closed books that were slept on and eaten off but never read aloud.
“Actually I kind of forgot too.”
“You did?”
Again the two-shoulder shrug, this time with averted gaze. But the problem with best friends, friends who had known you from day one of your first year in college, was just that: they knew you. They knew the expressio
ns on your face, the things you did to distract. To avoid talking. They knew the two-shoulder shrug, the averted gaze.
“Why do you have such a hard time with your mother, anyway?” Sunshine said. “You’ve never given me a good reason.”
“A good reason for what?”
Pretending you didn’t know what she was talking about. That was another way to stall. To avoid. To redirect. To give yourself time to think up a good answer. But I did know what she was talking about, and she knew I knew. See the two friends as they were fourteen years ago, back in college, when they shared a dorm room in the White Mountains. See the slim green phone on the coffee table between their beds. Hear it begin to ring, that shrill jingle of a landline ringtone.
Brr. Brr. Brr.
See Clara close her eyes and picture a heavy black telephone in a kitchen in a house in Sterns. Her house, two states away, across the Whites and the Greens and down through the heart of the Adirondacks. See her picture Tamar sitting at the kitchen table, the receiver pressed to her ear, waiting. The every-Thursday phone call. See Clara bite back a sigh and pick up the phone.
“Hello.”
“Greetings, Miss Winter speaking. How may I direct your call?”
“Ma.”
“Shall I see if Ma is available?”
“MA.”
At this point I would quit speaking and wait. She would wait too. Then she would start speaking again as if she had just been summoned to the phone.
“Clara?”
“Ma.”
“How are you?”
“I’d be better if you quit this stupid phone charade.”
“Not sure what you’re talking about.”
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