By Barbara Kristaponis

I am trying to write about having a brain tumor and being alone. I would rather be cleaning. An icy-sidewalk night at the corner of Broadway and 79th, and I forgot what day it was. And then I could not bring to mind what month it was. What year. What time of day. I asked my mind to bring me back to the date. And then by accident I bumped into our homeless neighbor who collects for God’s Love We Deliver. His long gray dreads spun out as he steadied himself. He said change for the homeless. I said sure.

I walked a block. No leaves on the trees. No snow. People walked past me in heavy coats. Early evening and dark a bit, that hazy after-sunset city dark in Manhattan, the sun down, pink streak in the sky, streetlights—amber warm. Rows of paper people with pointed ears and green short pants in the window of the Chinese laundry. Christmas elves, ah. The laundry I recognized. A familiar. And then I knew what month it was, what year, what day. Not losing it? Not crazy? Okay then. December fourth. Year 2000. Six o’clock. Monday. No class, no meeting, no one waiting for me anywhere. I was two blocks from home. A workday, yes, it had been, and now I was going home. My sister would be calling. Going home tired.

COUNT BACKWARDS
What day is it, Clifford? Where are you, Mr. Rodriguez? New York, yes, that’s right, but where in New York exactly? What is this building where you are? Hospital, yes, that’s good, sweetheart. Who is the President now, Rosa honey? Mrs. Packard, do you think someone intends to harm you in some way?

The mental status exam. When I was a young camerawoman new to the city, I ran the video studio in a psych hospital. I recorded intake interviews and therapy sessions by psychiatry residents of this hard-to-get-into residency program. A standard set of questions. A standard set of tasks for the patient.

Starting with 100, subtract 7 from 100, and then keep subtracting 7 from that number as far as you can go. Spell “world” backwards. If something costs 57 cents, and you give the store clerk one dollar, how much change should you get back?

BALD-HEADED WOMEN
Head surgery. Year 1977. Baltimore. Johns Hopkins Hospital. On the MRI a white egg just outside my skull, five-centimeter brain tumor on the vestibular nerve. And so I was bald for a while. I was thirty. I hated my short hair growing in. I wore scarves—my mother said rags—around my head, bandannas tied in the back.

My photographer best friend took pictures of me in my new quarter inch hair growing out from bald. In the photos, I am leaning against the wood doorjambs of a vine-encrusted decrepit farmhouse. I have my arms crossed, holding my shoulders, in a black turtleneck sweater. I look preoccupied and like I wouldn’t let you in no matter what you said. I look serene or angry, unmitigatedly angry.

I came out of that surgery okay, like a loaf of bread that was raised properly. I recovered. Oh so happy to be alive. I moved from Baltimore to New York. The euphoria lasted years.

But the Intensive Care Unit sometimes still plays like a movie in my head. The ICU Nurse asks me: “So where’s the head pain, hon? Over your eye?” I shake my head no. My hands out wide over my white-bandaged head, I cannot speak. My mouth moving causes knife-slicing head pain. I want to say, don’t you know, the pain after head surgery is in the whole goddamn head? Filling my head. Behind my eyes. Outside the skull and inside, a pounding, the cavity filled with some lead-heavy sticky liquid. A careless touch causes a ripple in my ocean-head—bang, a tsunami pounding the side of my head. I am a huge head, a huge brain, a humongous, solid, cement, pounding brain.

I had just one thought then, in that ICU, and the thought was this: if they tell me, “Well, yes, we do have a pill, a drug that will end the pain. The only thing is you will die.” YES, OH YES, I would say, YES. I WANT IT! I WANT IT!

One day I took the IRT #1 home from shrimp buying in Canal Street. A young woman with her hair growing out from bald, in my subway car, standing near me. Ash blonde except for one dark dyed strand from the top right of her skull to the tip of her ear. Thin braid-like stalk, soft with red beads. Nose ring, large hoop earrings, two necklaces, four rings on each hand, eight bracelets on each arm, all silver, backpack with one worn sticker patch. I stood, hanging on to a pole, swaying with other tired people, near her, trying to read this patch, until I got it: Touch Thyself. It was Something, Something, Touch Thyself, like The World is Good, Touch Thyself.

REFRIGERATOR HABITS
Winter 1990. I wake up with a bad sore throat, fever, and head cold. I cancel my camera jobs. Weeks then months. I think I have a bad flu. I think I have chronic fatigue. I think we are going to war. We are going to war. The Gulf War.

My days repeat themselves like this: get up, take shower, lay down in bed, get up, dry hair, lay down in bed, get up, fix coffee, drink coffee, lay down in bed. My director finds someone else to supervise all our CMX online video editing. No one can read my handwritten off-line coding lists on yellow lined paper. Someone has to handwrite those again. Pages and pages.

Behold the refrigerator. The door open, I stare at jars of mustard and mayonnaise. What did I come to look for? What did I need? I don’t remember. So then back to sitting down. Then back to the fridge. Back and back again. I stare into mustard and mayonnaise. Internally agitated because I know I have been here at the fridge several times already. Do I eventually remember? Sometimes.

BOOK AND CHAIR
Winter Spring Summer 1990. Every day I sit at my big windows. Look southwest to the sky. Try to get better via the rest cure. Little blue pieces of paper all over my desk. I scribble the same things over and over. Remember some day you do want to visit Seattle, maybe move there. Remember you do walks in the park. Remember you do video. Remember you do liver for dinner.

I watch a lot of TV. I need to be focused on something outside myself. To stare out the window after a fashion, unfocused, and have my own thoughts coming and going is discombobulating because the thoughts—they begin to race so much. Each one leads in a new direction. In my head I turn and lunge and then catch myself and stop the new thought before I panic. To not be Alice down the rabbit hole, I have to move fast. This makes me inside dizzy and afraid to fall, even though I am sitting in a chair.

He would stand, long-nosed and dark, in a black cloak, and conjure marvels from the air.
— Salmon Rushdie. Grimus

In my yellow canvas chair with fat bamboo arms, from morning to sunset I read. I read Salman Rushdie’s Grimus. Every two minutes, I discover that he knows the true meaning of the world. I now know, too, myself, the whole meaning of the world. I write long passages from Grimus into my notebooks because I see glorious nuggets of wisdom there, every half page. And not everyone sees this, I know. I don’t write any comments about what I find so glorious, and I come to see that I, like Rushdie, am “an old soul.” And this isn’t a mild, weak-tea discovery. This is MAJOR STUFF.

An old soul, Madame Blavatsky wrote, was more along the road, more evolved And then you die this time around, you don’t come back. You are just one step from being off the wheel of agony and suffering. And then you die. And then you die, for real.

CRAZY AND STUBBORN
Five months of this sitting thing. No one in my family and no friend can convince me to see a doctor. I am afraid to see a regular MD doctor, afraid I won’t answer questions correctly and be institutionalized as a crazy person. I knew that on the basis of answers to questions, people had been diagnosed as mentally incapable, sent to electric shock, put on psychotropic medications, not allowed to go home. What if I couldn’t count backwards?

Thorazine. Drugs taken and voices stilled. And the incurable shaking of limbs and wagging tongue, involuntary, permanent, caused by the dopamine antagonist drugs given to cure you. You would then look to the world, shuffling along York Avenue near your hospital, like the crazy person you were afraid all along you were. The voices no longer in your head, but with every passerby who stares, you are judged insane, and you are shunned.

Exhibit A: Patient hears voices telling her to jump from her 14th floor windows. Yes, I do have three big windows; yes, I do live in an apartment on the 14th floor. Big sky out there. I do not go near my windows for fear I will jump out, not at all because I am suicidal, because I am not. But I do have something pushing in me, not a voice, more a force that says: JUMP, JUMP, GO. And not just once. Why? I have no idea. But I do stay away from going right up to those windows. To tell my family this, to tell a doctor this? Then drugs for sure. Thorozined.

SISTER
She was a small white blond silky straight bob and all raw exploding energy at five, I remember. Bernadette. Two years younger than me. I was the protective big sister, holding her hand on the walks down Edmondson Avenue to see Dr. Bernadini, our dentist who did not believe in using Novocain. She would have been vomiting all morning out of fear, and I would feel angry and helpless to do anything except hold her hand tight on the walks.

She probably wanted to bop me often for all the non-protective big sister things I did. Like my objecting to her taking my things, a sweater, a doll’s dress, socks. Since my favorite book for a while was The Borrowers, you would think I could have been more accommodating. But over “borrowed things” we fought on the stairs, we fought across the aisle of our twin beds, we fought in the car back seat. I would accuse. Her face red with outrage. When parents intervened, I would turn calm, my sister all incoherence and fluster. I would say, “… she never asked me … and now it’s all bad with glue, with crayon, with spaghetti… ” I won. My parents were introverts like me. She didn’t stand a chance.

We shared a blue room with white patchwork quilts and dark blue ruffled skirts on the twin beds. Two statues of the Virgin Mary, one in blue robe, one in white, our separate May altars with paper flowers. My sister’s Virgin Mary had a big repaired crack running down the back.

“You,” she said once, “as a kid, I always knew you were definitely an introvert.”

“How did you know this then?”

“You were very quiet. And you wouldn’t let me in your world.”

“How did you know that I wouldn’t let you in my world?”

“Well, for one, you were very neat, you wouldn’t let my messiness in. You drew a chalk line on our carpet to separate your side from my side. You needed borders and boundaries.”

“We weren’t close when we were kids then, were we?”

“Hard to say. We didn’t talk much after you started high school. But we always had pillow fights. That was a kind of talking.”

TELL ME WHAT TO DO
Oh, Bernie, during the nine months of this thing, before they knew this was another brain tumor, you were always close as a phone call, no matter the hour. To say thank you is paltry. It is more than thank you. You would tell me what to do next when I called you five times a day where you lived not even in the same state as me. In the middle of your work day. In the middle of fixing dinner for your family.

“It’s bad again, what should I do?” I say.

You say, taking two breaths between words,

“Write down what I tell you.”

You give me five things to do: go walk one block outside, come back, go to your table by the window, go write in your notebook, fix a sandwich. I write everything down that you say. I do everything you give me to do. One day you end with “Call Alexandra and Melissa to see if they can take you to see Dr. A.”

I had heard that this doctor was having success with chronic fatigue patients. I thought that could be what was wrong with me. I made an appointment.

SINGLE, DIVORCED, MARRIED?
At the non-traditional alternative-medicine Dr. A’s office, I have trouble filling out the intake questionnaire. I say to Alexandra, rushing all my words together, “This box here, single, married, divorced. Now what exactly do they want to know here? I don’t know what to check here, divorced is what I feel I am, but once the sixties happened, it was not so necessary to get married. We just lived together. So what do they want to know here, my legal status, or what? Then it has to be single, I guess, what do you think? But if they want to know my emotional history, this might be important, after all, I may be affected by some stress I didn’t understand at the time, so then it would be divorced, and then, once, twice? I can’t resolve this; I can’t even explain why I think it was important.” I left it blank.

Then there is the part where I ask directions for the ladies’ room and keep getting lost in the tiny waiting room with only one corridor out. The non-traditional alternative-medicine doctor eventually sends me to Dr. E, a non-traditional alternative-medicine psychiatrist, who puts me on lithium. He tells me that my diagnosis is nervous breakdown because he knows that I know that giving lithium means they think you are bi-polar, aka manic-depressive.

But I take the lithium, thinking maybe this is now known to help other conditions. So I go four more months, living with friends and family in Massachusetts, Pennsylvania, and New Brunswick, Canada, because I can’t take care of myself alone until finally in Baltimore I am convinced to go to Johns Hopkins and have an MRI scan, and just like in 1977, they find a new five-centimeter tumor in my head and I have brain tumor surgery number two. 1991.

DECEMBER 15 FRIDAY YEAR 2000
Today I was let go from my job as a secretary. The memo said, … re-engineering to begin in our new Cardiac Center … appreciated your help … during this year of transition for us all.

I listed my offenses on the way to Final Payroll: too many people in the office asking for supplies; too much yakking when support associates came to sign for their paychecks; too many high five’s—not professional; too many como esta’s; too many cansada por qué’s.

But more probably it was insubordination, the reason I was let go.

In April, I had called in sick three days when they had approved just one day. “Only one secretary off at a time, and Lydia has already been approved for her vacation those days. Sorry.”

When I started working full time again after my second brain surgery and five years on disability—not film/video work but temp-to-perm clerical work—I was still having balance issues, still going to physical therapy, still doing face muscle exercises, still close to broke, and still tired.

And so when the news was good—my brain looked okay—no signs of a third acoustic neuroma, I wanted to stare for a long time at the mallards paddling around the shuttle docks at the Fells Point harbor. So I called in sick for two extra days in Baltimore. A risky pleasure in stubbornness.

When I went back to the job afterwards, one of my three bosses told me that everyone thinks this—thinks that their private tragedy is worth stopping all their obligations to this hospital, to this transplant clinic. “All you people think this. Four months to go home to Puerto Rico for someone dying? For deaths in the family, we have three condolence days. That is more than enough. There is always some emergency, someone sick in the islands, some legal wrangle, and people want a month off. We can’t have this. This is a hospital. There are cutbacks. Everybody has to pitch in.”

Or maybe they re-engineered me out because I was just not sharp enough anymore. A secretary is a repository for everything everyone else thinks they need to forget. And my memory was some days, terrible. I often transposed numbers taking phone messages for the surgeons. Many forms in triplicate, like the Employee Warning Notice, that had to be typed, could not be done on the computer. Lately on those forms, I had been making a lot of typos, like cancer tumóre, cancer tumnro.

God, did I fear a third one, I could barely say the words, brain tumor, brain tumóre, like amóre, brain tumnro, like tundra, like the coldness I had felt around me waiting for my first and second brain surgeries.

AWFUL AND BEAUTIFUL
Awful dream last night, and this morning I am running late for another doctor appointment. I dreamt I had only an empty house to return to, that everything had been moved out, that I’d already moved everything out. Outside the house the phone was ringing on the beautiful lawn.

I could go on and on, and I will, just not today. I sometimes manage to walk to a little café on Amsterdam and have a coffee outside. Small leaves on the trees. No snow. It is spring. In New York, there are so many beautiful women and men just walking on by. A man running across 78th Street holds onto his head, pressing down wisps of hair as the wind makes them stand straight up from his almost-bald head.

Copyright 2021 Kristaponis