Read an Excerpt
Something has happened. You can always tell. You come to and find wreckage: a smashed lamp, a devastated human face that shivers on the verge of being recognizable. Occasionally someone in uniform: a paramedic, a nurse. A hand extended with a pill. Or poised to insert a needle.
This time, I am in a room, sitting on a cold metal folding chair. The room is not familiar, but I am used to that. I look for clues. An office like setting, long and crowded with desks and computers, messy with papers. No windows.
I can barely make out the pale green of the walls, so many posters, clippings, and bulletins tacked up. Fluorescent lighting casting a pall. Men and women talking; to one another, not to me. Some wearing baggy suits, some in jeans. And more uniforms. My guess is that a smile would be inappropriate. Fear might not be.
I can still read, I’m not that far gone, not yet. No books anymore, but newspaper articles. Magazine pieces, if they’re short enough. I have a system. I take a sheet of lined paper. I write down notes, just like in medical school.
When I get confused, I read my notes. I refer back to them. I can take two hours to get through a single Tribune article, half a day to get through The New York Times. Now, as I sit at the table, I pick up a paper someone discarded, a pencil. I write in the margins as I read. These are Band-Aid solutions. The violent flare-ups continue. They have reaped what they sowed and should repent.
Afterward, I look at these notes but am left with nothing but a sense of unease, of uncontrol. A heavy man in blue is hovering, his hand inches away from my upper arm. Ready to grab. Restrain.
Do you understand the rights I have just read to you? With these rights in mind, do you wish to speak to me?
I want to go home. I want to go home. Am I in Philadelphia. There was the house on Walnut Lane. We played kickball in the streets.
No, this is Chicago. Ward Forty-three, Precinct Twenty-one. We have called your son and daughter. You can decide at any time from this moment on to terminate the interview and exercise these rights.
I wish to terminate. Yes.
A large sign is taped to the kitchen wall. The words, written in thick black marker in a tremulous hand, slope off the poster board: My name is Dr. Jennifer White. I am sixty-four years old. I have dementia. My son, Mark, is twenty nine. My daughter, Fiona, twenty-four. A caregiver, Magdalena, lives with me.
It is all clear. So who are all these other people in my house? People, strangers, everywhere. A blond woman I don’t recognize in my kitchen drinking tea. A glimpse of movement from the den. Then I turn the corner into the living room and find yet another face. I ask, So who are you? Who are all the others? Do you know her? I point to the kitchen, and they laugh. I am her, they say. I was there, now I’m here. I am the only one in the house other than you. They ask if I want tea. They ask if I want to go for a walk. Am I a baby? I say. I am tired of the questions. You know me, don’t you? Don’t you remember? Magdalena. Your friend.
The notebook is a way of communicating with myself, and with others. Of filling in the blank periods. When all is in a fog, when someone refers to an event or conversation that I can’t recall, I leaf through the pages. Sometimes it comforts me to read what’s there. Sometimes not. It is my Bible of consciousness. It lives on the kitchen table: large and square, with an embossed leather cover and heavy creamy paper. Each entry has a date on it. A nice lady sits me down in front of it.
She writes, January 20, 2009. Jennifer’s notes. She hands the pen to me. She says, Write what happened today. Write about your childhood. Write whatever you remember.
I remember my first wrist arthrodesis. The pressure of scalpel against skin, the slight give when it finally sliced through. The resilience of muscle. My surgical scissors scraping bone. And afterward, peeling off bloody gloves finger by finger.
Black. Everyone is wearing black. They’re walking in twos and threes down the street toward St. Vincent’s, bundled in coats and scarves that cover their heads and lower faces against what is apparently bitter wind.
I am inside my warm house, my face to the frosted window, Magdalena hovering. I can just see the twelve-foot carved wooden doors. They are wide open, and people are entering. A hearse is standing in front, other cars lined up behind it, their lights on.
It’s Amanda, Magdalena tells me. Amanda’s funeral. Who is Amanda? I ask. Magdalena hesitates, then says, Your best friend. Your daughter’s godmother. I try. I fail. I shake my head. Magdalena gets my notebook. She turns back the pages. She points to a newspaper clipping:
Elderly Chicago Woman Found Dead, Mutilated
CHICAGO TRIBUNE—February 23, 2009
CHICAGO, IL—The mutilated body of a seventy-five-year- old Chicago woman was discovered yesterday in a house in the 2100 block of Sheffield Avenue. Amanda O’Toole was found dead in her home after a neighbor noticed she had failed to take in her newspapers for almost a week, according to sources close to the investigation. Four fingers on her right hand had been severed. The exact time of death is unknown, but cause of death is attributed to head trauma, sources say. Nothing was reported missing from her house. No one has been charged, but police briefly took into custody and then released a person of interest in the case.
I try. But I cannot conjure up anything. Magdalena leaves. She comes back with a photograph.
Two women, one taller by at least two inches, with long straight white hair pulled back in a tight chignon. The other one, younger, has shorter wavy gray locks that cluster around chiseled, more feminine features. That one a beauty perhaps, once upon a time.
This is you, Magdalena says, pointing to the younger woman. And this here, this is Amanda. I study the photograph.
The taller woman has a compelling face. Not what you’d call pretty. Nor what you would call nice. Too sharp around the nostrils, lines of perhaps contempt etched into the jowls. The two women stand close together, not touching, but there is an affinity there.
Try to remember, Magdalena urges me. It could be important. Her hand lies heavily on my shoulder. She wants something from me. What? But I am suddenly tired. My hands shake. Perspiration trickles down between my breasts.
I want to go to my room, I say. I swat at Magdalena’s hand. Leave me be.
Amanda? Dead? I cannot believe it. My dear, dear friend. Second mother to my children. My ally in the neighborhood. My sister. If not for Amanda, I would have been alone. I was different. Always apart. The cheese stands alone.
Not that anyone knew. They were fooled by surfaces, so easy to dupe. No one understood weaknesses like Amanda. She saw me, saved me from my secret solitude. And where was I when she needed me? Here. Three doors down. Wallowing in my woes. While she suffered. While some monster brandished a knife, pushed in for the kill.
O the pain! So much pain. I will stop swallowing my pills. I will take my scalpel to my brain and eviscerate her image. And I will beg for exactly that thing I’ve been battling all these long months: sweet oblivion.
The nice lady writes in my notebook. She signs her name: Magdalena. Today, Friday, March 11, was another bad day. You kicked the step and broke your toe. At the emergency room you escaped into the parking lot. An orderly brought you back. You spat on him.
This half state. Life in the shadows. As the neurofibrillary tangles proliferate, as the neuritic plaques harden, as synapses cease to fire and my mind rots out, I remain aware. An unanesthetized patient. Every death of every cell pricks me where I am most tender. And people I don’t know patronize me. They hug me. They attempt to hold my hand. They call me prepubescent nicknames: Jen. Jenny. I bitterly accept the fact that I am famous, beloved even, among strangers. A celebrity! A legend in my own mind.
My notebook lately has been full of warnings. Mark very angry today. He hung up on me. Magdalena says do not speak to anyone who calls. Do not answer the door when she’s doing laundry or in the bathroom.
Then, in a different handwriting, Mom, you are not safe with Mark. Give the medical power of attorney to me, Fiona. It is best to have medical and financial powers of attorney in the same hands anyway. Some things are crossed out, no, obliterated, with a thick black pen. By whom?
My notebook again:
Mark called, says my money will not save me. I must listen to him. That there are other actions we must take to protect me. Then: Mom, I sold $50,000 worth of IBM stock for the lawyer’s retainer. She comes highly recommended for cases where mental competency is an issue. They have no evidence, only theories. Dr. Tsien has put you on 150 mg of Seroquel to curb the episodes. I will come again tomorrow, Saturday. Your daughter, Fiona.
I belong to an Alzheimer’s support group. People come and they go. This morning Magdalena says it is an okay day, we can try to attend. The group meets in a Methodist church on Clark, squat and gray with clapboard walls and garish primary-colored stained-glass windows.
We gather in the Fellowship Lounge, a large room with windows that don’t open and speckled linoleum floors bearing the scuff marks of the metal folding chairs. A motley crew, perhaps half a dozen of us, our minds in varying states of undress. Magdalena waits outside the door of the room with the other caregivers. They line up on benches in the dark hallway, knitting and speaking softly among themselves, but attentive, prepared to leap up and take their charges away at the first hint of trouble. Our leader is a young man with a social-worker degree. He has a kind and ineffectual face, and likes to start with introductions and a joke.
My-name-is-I-forgot-and-I-am-an-I-don’t-know-what. He refers to what we do as the Two Circular Steps. Step One is admitting you have a problem. Step Two is forgetting you have the problem.
It gets a laugh every time, from some because they remember the joke from the last meeting, but from most because it’s new to them, no matter how many times they’ve heard it.
Today is a good day for me. I remember it. I would even add a third step: Step Three is remembering that you forget. Step Three is the hardest of all.
Today we discuss attitude. This is what the leader calls it. You’ve all received this extraordinarily distressing diagnosis, he says. You are all intelligent, educated people. You know you are running out of time. What you do with it is up to you. Be positive! Having Alzheimer’s can be like going to a party where you don’t happen to know anyone. Think of it! Every meal can be the best meal of your life! Every movie the most enthralling you’ve ever seen! Have a sense of humor, he says. You are a visitor from another planet, and you are observing the local customs.
But what about the rest of us, for whom the walls are closing in? Whom change has always terrified? At thirteen I stopped eating for a week because my mother bought new sheets for my bed. For us, life is now terribly dangerous. Hazards lie around every corner. So you nod to all the strangers who force themselves upon you. You laugh when others laugh, look serious when they do. When people ask do you remember you nod some more. Or frown at first, then let your face light up in recognition.
All this is necessary for survival. I am a visitor from another planet, and the natives are not friendly.