The several blank books for alabaster eyes are there to tell ours that the readers and mourners have access to a story—probably the religious story at the center of life in the late Middle Ages. The here always exists in reference to the there, the there in this case that is bound up in books—handwritten in those days on vellum, the skins of calves, so that a large book was a herd of animals transformed, in our era printed on wood-pulp paper in vast numbers so that softwood forests are laid up in the libraries for those who have eyes to see. Vellum lasts longer.
The centuries have not done much to the alabaster reader. I often wonder at the endurance of the inanimate. The stylish suit in which my mother got married is dark blue, with white piping and strong lines. With its shoulder pads and jaunty cuffs that come to angular points, it looks like a naval uniform, and like a uniform it made its wearer look more formidable, much more so than the faintly rumpled army khaki and cap my drafted father was wearing at their city hall wedding. In their military uniforms they began twenty years together in which he won most of the battles, though she won the war. Or they both lost the struggle for love and subsided into war. Or won it, since they begat four more people to continue the experiments. But the man she married has been dead a quarter century; the woman who wore that suit has not fit into it in nearly half a century.
Human beings have come in and out of existence, metamorphosed, declined, and the excellent midnight blue wool serge is virtually the same as it was more than five decades ago. She wore it with a white fur muff in place of a bouquet since the wedding was in winter, and the animal pelt was a ferocious substitute for flowers. The tall, slender, dark-haired young woman who wore it is now stooped over, an ancient whose hair is whiter than the statues of the mourners, whiter than milk, white as snow.
Even memory of that day is gone; no one else who was there is yet alive; but the photographs show them as they were, everyone young, hale, ignorant about what the next half century would bring them. The photographs have curled a little but they are otherwise unchanged and unfaded. The pale pansy of her face under a jaunty little veil: if I could have warned her, I might have canceled my own existence.
The wedding ring she wore, gold with tiny round turquoises like the sugar jimmies that go on cakes and cookies, vanished long ago, but the gold must still exist even if the muff fell apart or was thrown away. Things that never lived don’t die, and even the objects made out of the living—the paper from trees, the vellum from calves—can last for centuries. We wear out. The wool suit threatens to outlive everyone who knows or cares about it. And it is only wool and silk. Stone, metal, wood are far more enduring.
The whiteness of the page before it is written on and after it is erased is and is not the same white, and the silence before a word is spoken and after is and is not the same silence. Snow falls before and after the growing season; the era of my harmonious relationship with my mother flourished before my memory begins and after hers faded. She was herself being erased, a page returned to whiteness on its way to nonbeing.
She had long told a happy story, undoubtedly true, in which she wanted to have four children and did, and another one, equally true, in which she wanted to be independent, educated, emancipated, adventurous, and was full of bitterness and regret that all this had not transpired as she had imagined it. It had, in fact, mostly taken place, within the limits of her timidities, for she was fearful as well as furious and maybe the latter because of the former. She added up her life over and over, but the sums were never quite the same. Whose are? It’s like measuring your shadow.
She seemed unable to hear me for so many long years but I spoke elsewhere; I wrote; I became someone else, someone audible, I filled up pages, trees fell for my books. I never heard her describe a dream, and I don’t know what she dreamed of. Did she know herself in this way I didn’t know her? What were some of the other stories of who she was? Could she have told it another way, and would that have given her another life? I can take this other self of hers on faith, because there are depths everywhere, but I didn’t come into contact with it much and wonder if she did.
Ours was a game of chess in which she had made the first move and from there everything went forward. Or at least certain moves were made possible. And others impossible, or at least unimaginable then. It’s always easy for outsiders to instruct one on what should’ve been done—directions for being fearless or saintly are likewise easy to issue, a little harder to execute. Like chess, there are rules, and breaking them takes momentum or confidence or a vision of other ways of doing things or all those things at once. Knights fell, pawns crawled, decades passed, then finally the chessboard went white, the pieces lost their names, the game came to a halt.
There’s a chess set by the conceptual artist Yoko Ono in which all the chess pieces and the board are white, like those mourners five hundred years before. The two arrays of pieces mirror each other: the army at war with itself. Or not. Ono’s was an artwork about the cold war but also about the way you can erase the very notion that there are two sides and merge, and surely we two who were so alike could have been one side. Or were. Sometimes people endeavored to play chess, that game of medieval warfare, with Ono’s pieces anyway, struggling to keep track of whose piece was whose, so that the game resembled one of those autoimmune disorders in which the body attacks itself. The monochromatic set called for another game, one in which there was only collaboration or contemplation or that other kind of play that is anarchic, with improvised and evolving rules.
Finally, the war ended. She forgot the stories that fueled her wrath, and when they were gone, everything was different. When I was in my thirties and things with her were at their worst, I’d considered never seeing her again, walking away from the chessboard. I think quitting then would’ve frozen our relationship at its worst point. In this late era, well down the road labeled Alzheimer’s, my mother lit up at the sight of me. I wryly said to one of my brothers at this juncture, “It’s like we’re in the same family.” It wasn’t just that she was more pleasant for me to be around; she seemed to be more pleasant for herself. She had achieved something of the state people strive for through spiritual practice: a lack of attachment to the past and future and a wholehearted participation in the present. It had come as part of a catastrophic terminal illness, not a devotional pursuit, but it came.
• • •
There was an era in which my mother was a happy child. Perhaps there had been another one before my time. When that season came around again, the autumn after the apricots, it was hard to tell what caused it. I had put her on medications to calm her conduct and soothe her agitation, but it may not have been the medications. She had a degenerative brain disease that was rearranging her memory and her personality.
Whatever the cause, she lost her stories. They seemed to go quite suddenly—at least the stories about me. Nearly all the grudges, comparisons, expectations, resentments, ancient histories, and anxious anticipations seemed to disappear in that second spring of her life when she seemed to have lost as many bad as good things and achieved a new equilibrium and a new joy. Occasional odd things surfaced. But mostly she was festive, even if her jokes that I was her mother had an edge—as well as an edge of confusion about how this world was organized and how we were related. With Alzheimer’s time runs backward, and given that, maybe I was her mother, and certainly I sometimes played a mother’s part.
Liberated from the burden of her past, things became incomparable, each slice of cake the most delicious cake ever, each flower the most beautiful flower. She took pleasure in a great many things in the life that she was leading as a resident in a dementia facility and was often almost giddy with enthusiasm. Sometimes she spoke of how terrible the disease of Alzheimer’s was, but mostly she didn’t bring it up and seemed unconcerned and unself-conscious about her condition and circumstance.
There must have been terror and dismay early on, but I didn’t see much of it, and showin
g up and steadying her ability to function must have reassured her even if we didn’t go to the heart of the matter. I grew adept in handing her back her information about what she’d done, where she was, who she’d been, and who she was connected to, without breaking the surface of ordinary conversation, got used to covering the same ground repeatedly with aplomb, and eventually became competent at mostly one-sided conversations that weren’t too off balance.
She was living in a safe place with assistance and attention always hovering, with art and music and exercise programs and meals and more help as her condition advanced. The caregivers were mostly immigrants, and in her early days there she often advanced a theory that emotional warmth could be equated to the warmth of one’s country of origin. It was not a very tactful notion, but the mostly brown- and black-skinned people who worked there were infinitely patient and kind. It was, in one light, a gracious bedlam and in another a place staffed by hosts of angels and saints performing miracles for the benefit of the disintegrating beings in their charge.
She clung for the first year or so to a black-and-chrome radio about the size and shape of a large book, which she hid behind her bed for fear someone would steal it and listened to up close, sometimes holding it almost as though it were a pet or an amulet. Perhaps she hoped the radio would pour back into her some of the information that was leaking away. And then the radio was swept away in the journey downstream and was no longer part of her life. I remembered it with a pang myself, a pang that she changed so fast and that I myself adjusted without always remembering that she had been someone else not long before.
Occasionally I’d realize that her condition would have been shocking if it had arrived suddenly, but she traveled so slowly it often seemed imperceptible until we reached another milestone. During the early stages, she felt more like a parent than she ever had, in that she was affectionate and enthused about me. She was also a child who needed help with many things. And everything was vanishing, more or less literally. She was increasingly impaired not in her eyesight but in her brain’s ability to interpret what her eyes saw, an effect of Alzheimer’s called “agnosia,” or not-knowing. She told me early on that she recognized people by their voices, not their faces. Faces were gone. Reading had vanished long before.
She could not tell a change in the color of the pavement from a hole in the ground, or a carpet pattern from objects she might trip over, so she became a tentative walker, and we took to holding her hand or her arm when we walked her. It was impossible to know what remained visible. She often could not see what was waved in front of her face or set before her on the table, but once when one of her nieces had come to visit and was walking with us, she noticed a geranium petal on the ground and exclaimed over it. I was surprised she saw that tiny scrap of pink after months and years of hardly recognizing anything and picked it up for her.
For a while I would take her to an Italian restaurant in a shopping plaza where the staff was indulgent about the eccentricities of our dining. She thought their salads were the best salads ever and enjoyed the excursions. On one such outing, she wanted a lipstick; she often did in that era. I bought them regularly and they vanished regularly. We went to the plaza’s drugstore, and I tried to show her some shades of pink. She didn’t seem to see them even when I waved them under her eyes, so I handed the uncapped lipstick to her and cautioned her that she couldn’t try it on but should look at it.
I hoped she’d be able to see it if she held it. She attempted to try it on, I wrested it from her as gently as I could, and then we went through the same routine with a better shade of pink. Now it’s obvious that it didn’t matter what shade I bought; the goal was to have a lipstick because a lipstick signified something. But it seemed like respect to treat her like a woman who’d want to select her lipstick color with care. We ate our ravioli and salad without any further misadventures. Probably shortly thereafter the lipstick vanished. Not so long after that she forgot about lipstick.
My mother became different people, one after another, in the years after that apricot summer. She was a happy child for a couple of years. Then the precarious balance shifted, and she had more trouble with everything. It resembled in some ways the stages of childhood running in reverse, and as with a child, whatever arrangements suited her at a given stage didn’t necessarily work when the next one arrived. How and when it would arrive was never clear in advance. Another thing to come to terms with was that there was no preventing or changing the course of events: the disease was a road she was going to go down no matter what. All we could do was help her travel it as gracefully as possible and locate what pleasures and comforts were available along the way.
There was an era in which my mother fell down regularly. Or at least the staff at the place where she lived thought she was falling down a lot. They would find her sitting or lying on the carpet and their protocol required calling an ambulance. They’d call one of us too. We’d rush over and try to ward off the emergency medical technicians’ inclination to strap her to a bodyboard, to put her in an ambulance, to strip her and put her in hospital gowns, once even to catheterize her for a urine sample, to generally traumatize her when she had not been traumatized before they arrived.
A few times she had a minor bruise or scrape that might have been falling-related, but she was never seriously injured in this phase. I came to think that perhaps some of the time she was sitting or lying down. She was losing her ability to navigate, her balance, and her confidence. Her kind doctor proposed that her caregivers were negligent in not preventing her from falling down, but there was no way to do so without depriving her of her liberty.
There were pretty grounds at her residence, with a rose garden and lemon trees, a pomegranate tree, primroses in front of the administration building, and other greenery, and a series of paths that let us take a fifteen-minute-or-so walk at her slow pace in the phase after walking around the neighborhood was over, long after I stopped taking her out into the confusing world of restaurant meals and car trips. She couldn’t smell the roses—the disease had stripped that away early—but there was a porch-style swing near them we sat on, and the fresh air and walks were good.
One time we went across the little central street as usual toward the sidewalk on the far side and I tried to steer her to a curb cut. She wanted to go straight toward the curb instead and I helped her step up to the grassy higher ground. On the grass she paused a moment, then lay down calmly, almost gracefully. She had managed the step but not the adjustment in balance afterward, and this voluntary crumple was apparently her way of eliminating the risk of falling. Once she was down she was a little upset to be lying on the grass. She cried out, however, when I pulled on her arms to try to lift her, and didn’t have any capacity to get herself up.
This was in the era when the drugs seemed to be making her gain weight, before the era when I eliminated the no-longer-necessary drugs, which came a while before she lost her appetite and began to grow frail and thin. I tried a few things and then sat down on the grass to keep her company, took my cell phone out, and asked the dementia facility to send help. She lay and I sat on the grass, becalmed. After a few more minutes, the imposing woman in charge that day came out to help us, and so did two older men out on a stroll of their own. The three of them got her to her feet and she said to all of them or some of us or no one in particular, “I love you all.”
One Thanksgiving holiday during this phase my brothers persuaded and helped her up the short flight of stairs to my middle brother’s house. During the afternoon, too many people tried to help her and talk to her at once, and she got upset and overwhelmed. When it was time for her to go, my patient younger brother walked her to the front door. There she balked at the tiny step up over the doorframe and down to the porch. Nothing would persuade her to do it. I tried to keep everyone else at bay while he tried over and over to get her out.
Then he asked us to back up farther and got her to sit down in a straight chair
. Her two tall sons picked it up and carried it and her to the car that would take her back to the place where she could pretty nearly cope, or at least where her limits weren’t taxed. It wasn’t being carried out in a coffin, but the short procession had for me some sense of grave finality and of tragedy. Another door had shut. Not the last one, but an important one. She wasn’t going to go up those stairs again.
My mother was a happy child. Then she was a lost child who fell or lay down regularly. Then she was a person who had trouble finding words and became more and more silent and harder and harder to understand. After that she became more and more tentative about walking and the point at which she would no longer be able to walk approached. I skipped a week because I had a cold and that next stage arrived while I was away. Her legs were fine as far as we could tell, but the panoply of skills and the confidence and will involved had eroded too far. I learned a lot in witnessing her travel steadily into the unknowns and unknowables and in contemplating what constitutes a self beyond possession of skills and facts, and the value of that self beyond functionality.
Time passed. She was being helped with everything: with getting out of bed, with dressing, with eating, with going to bed, with washing. For her eightieth birthday, early in her second year in the Alzheimer’s residence, I’d baked her a cake and had a party at my home up three flights of stairs, but for her eighty-third birthday I brought her a tiny tres leches cake and a lunch of small salads and fed her and myself, though she picked up a few bits with her fingers. I lit three candles and one of the workers came over and sang to her with me, but my mother seemed confused by it all and was most definitely not going to blow out the candles. I blew them out and wasn’t sure what to wish for on her behalf. But she didn’t seem unhappy, even if the bright joy had flickered out a few years before. The road continued onward and downward. Both of us were at peace.
The Faraway Nearby Page 18