Children’s sizes are indeterminate
we are all windows
hold still in the light
the edginess / every year /o it’s so painful/ to let go
etched on the river’s sound
the water has to suffer
I was a kind friend
held in the branches of dreamers
and I loved you so
One thing remains constant. I have cerebral palsy. I tell people that I was “born with it” but that isn’t exactly accurate. Cerebral palsy isn’t something that resides genetically in one’s body – nor is it a disease. It derives from accidents at [or shortly after birth] and/or premature birth. In my case, the umbilical cord was wrapped around my neck in the womb. If there had been an operating room available, my seventeen-year-old mother could have had a C-section. There was not, and she did not. I was born dead.
Then, I was revived.
My mother does not remember my childhood. I don’t have a copy of my birth certificate. Every time I ask her for it, my mother says that I can’t have her copy because it “has my footprints” on it. Maybe she did send me a copy at some point, and I lost it? I don’t have my social security card either. Nor my yellow, vaccination card. I didn’t know any of my treatments as a child with cerebral palsy.
I have no information regarding myself.
My mother told me that I was treated for cerebral palsy in the Sacramento Shriners Hospital when I was a child, but that hospital did not open until 1997. I was born in 1969. The woman on the phone told me that it might have been the Shriners in San Francisco. She said that that hospital had closed, and she would email me the release forms. Then, my mother told me that I actually hadn’t been treated there, but had only gone once to “get an opinion.”
My mother sent me a text that said, “The name of the hospital I was in was “Herrick Hospital.” She meant the mental hospital where she went after my father left her, and she tried to kill herself. I was seven. My infant sister and I were placed in foster care, as they say.
I called Herrick Hospital and they told me that I needed the release form and it was on their website, but I couldn’t find it. So, I thought to email the link to my mother. Then, my son called on the phone and said, “Where are you?” I said, “I’m on my bed.”
My mother told me that the name of the hospital I was born at was called Brookside. That hospital closed in April 2015. I called the number on their website, and they listed another number which I also called. And that number gave a website which didn’t lead to anything. A text came from my mother:
“Look at your birth certificate. It may have the doctor who delivered you, Dr. Berrick, and your pediatrician. I don’t recall his first name, but his last name was Fitzpatrick. I am sorry I can’t remember everything.”
I could tell she was getting annoyed. So, I just texted back, ‘Thank you Mom.”
I called the agency in charge of the medical records. The receptionist told me that she needed to email me a release form. After I filled out the form, I would need to pre-pay the fee. Then, she told me that the department did not keep records back that far. She told me this after she told me the process.
The New York Society Library (where some of this was written) has patron records from the 1700’s. There is a website where researchers can look at what book Aaron Burr was reading before he shot Alexander Hamilton, or at least what book he had checked out. These were famous, able-bodied white men, but still.
My own records, the records of my birth, my foster care, my mother’s time in the mental hospital, and the cause of my sister’s death are not available to me.
I stole my father’s “Baby Book” from his bookshelf, and brought it My grandmother’s maiden name was Peterson and her grandparents were named Theis. I think they lived in Minnesota, and this was important to me.
I stopped at that sentence to wash my son’s laundry.
When I was in third grade, my mother had two boyfriends: they were named Mark and Steve. I was very much in love with the man named Mark.
When I was in 4th grade, my mother remarried another man who was neither Mark nor Steve. This is supposed to be a secret.
My mother and this guy took off in a heat of passion and got married in Las Vegas while my sister and I were at my grandmother’s house. Our middle sister lived with my father at the time. This guy was in the Air Force, and we packed our things and moved into his house on Travis Air Force Base; my mother, my youngest sister, and I. The guy had a son who was in middle school. I was in the fourth grade. The son and I did something sexual, the details of which I cannot remember. Perhaps it was abuse. Perhaps I instigated it. I know, like in Law and Order SVU, the younger person is not supposed to say that. I certainly instigated things earlier and later; with my cousin and the boys next door. Whatever the circumstances, my mother left him after three weeks, and we moved back to the same apartment we left in Vacaville. This went into the things never to be mentioned.
When I was twelve my mother entered her third marriage. My stepfather, who would raise me also was in the air force and we moved back to Travis. I was happy that my mother remarried because she had instilled a fear in me of a man breaking into the house and raping and killing her and me and my sister. I overheard her telling my grandmother her plan of action if someone broke in the house. We had a two-story apartment with our bedrooms on the second floor. She told my grandmother that if she heard someone break in below, she would throw pillows out the second story window, and she would throw us out the window. This conversation terrified me.
For my son’s first birthday party, we played the Bulgarian Baby Game. In the Bulgarian Baby Game the family puts a number of objects on a blanket. The object that the baby picks up will determine their future career. Jeffrey picked up the wallet.
For my son’s second birthday party, we had all his friends go wild in the house. My son was born two hours before Halloween, and in baby school he got in trouble for refusing to wear a costume on the holiday. Yea, he was contrary like that.
Around his fourth birthday, my son so pulled a Robert Duncan and officially changed his birthday to Halloween. He was David Bowie from Labyrinth that year. I spent two hours in the thrift store trying to find him a puffy, white shirt. And as the years went by the parties got wilder and held with increasingly abandon culminating in the year that all the children went trick or treating and Sidney and Conrad who were thirteen dumped seven pounds of candy all over my bed.
Fortunately, no one was hurt.
My son’s iPad, his computer, his PS4, his dog, his cats, his friends who mostly live in our house. I allow him to change the date of his birthday. I allow him to yell when he needs to. I allow him to be addicted to Diet Coke. I tell him anything below a 85 in school is unacceptable, but I am lying. I don’t really care, that is just what you are supposed to say. I want to be contrary to the other white, middle-class Brooklyn mothers. What does not matter is competition and What matters is politeness, kindness, empathy, diversity and caring. My son, the one who is listened to.
At a certain point, it became important to know the cause of my sister Emma’s death. I had said that the cause of a death is irrelevant. I had said this many times. In my mind there were two reasons to go to the hospital: to give birth and to die. I had trouble finding my way through emotion to the logic of this. So that, when the neighbor’s child was hospitalized with pneumonia, I was crippled. My mother said she thought Emma had had cystic fibrosis, but no one was really sure. Now, it seems that this is no longer true. I had to learn that not every situation is the same, no matter the emotional response. Still, I waited for all the tiny deaths.
It was a mild winter and the sun drawn a saw across the strings of our awkward hearts.
My mother told me that she had to stick by my stepfather’s wishes. She told me “a husband needs to come before one’s child because children grow up and move away.” She told me, “your spouse stays with you always.” I hated that woman who had four children and wrote the book in which she discussed the fact that she could live if her children died, but not her husband. Waldman famously wrote “I love my husband more than I love my children” and that she could survive the death of her children but not the death of her husband, and summarized her ideal family dynamic as follows: “He [husband Michael Chabon], and I, are the core of what he cherishes . . . the children are satellites, beloved but tangential.”
Later, we lost one of the children.
In the middle of the night I woke up, and I remembered story my mother told me. She told me that when I was born, and it became obvious that there was a difficulty in the birth, all my father was worried about was her. He wasn’t thinking of me. He wrote a poem about this and published it in the California Quarterly.
Every time I asked my mother for a story about my childhood, she told me a story about some event between her and my father.
I thought of the ways that I was and was not like Joan Didion.
I was reading Blue Nights by Joan Didion, the memoir about the death of her daughter. The book made me upset in many ways, and I threw it under the nightstand.
Joan Didion wrote, “We are moving into another summer. I find myself increasingly focused on this issue of frailty. I fear falling on the street. I imagine bicycle messengers knocking me to the ground. The approach of a child on a motorized scooter causes me to freeze midsection, play dead. I no longer go for breakfast to Three Guys on Madison Avenue: what if I were to fall on the way.”
When I first moved to New York, I did what every woman in her 20s in New York City without a job in late 1990’s did… well, ok, the second thing… temping. Despite knowing how to type and having a Master’s Degree, I wasn’t able to get recruited until someone at a typical temp agency gave me the number for an agency for people with disabilities.
It was fall, right before the Christmas rush, and the position I wanted was sales clerk at Macy’s. Despite the fact that I had just come from four years of stressful retail work at a major museum and had a Master’s Degree, the placement woman deemed me not “capable” for the job, and I was shipped off to the magical land of Tribeca to learn “data entry.”
I never did really understand the “data” I was “entering,” but it had something to do with records involving HIV/AIDS patients. The first organization I worked for was in Chelsea, then I moved to a hospital in Harlem, and finally a small organization in East Harlem run exclusively by and for women of color which offered me regular job. It was a short bus ride from my tiny sublet on W113th and ideal.
There was one issue. I was introduced to the job through my work for the temp agency. Evidently, taking a job at one of the organizations that worked through the temp agency was against the rules. When the agency found out that I broke this rule, the director brought me into his office and threatened to sue me. I had, in fact, broken the rule unknowingly but after the Macy’s incident, coupled with the fact that they had lost one of my checks, I didn’t have much sympathy for them. The organization, which was supposed to help disabled people be gainfully employed, in fact, made me feel like I was at the bottom of the disability food chain. The owner of the company told me that the woman at the Harlem Hospital had insisted I come back because I was the best worker they had sent. I don’t know if this was some sort of sweet talk but I left. They didn’t sue me after all.
I had been going to the same doctor’s clinic for a number of years and chose to see the gynecologist there when I got pregnant. When I went to get my first check up, she told me “You sure know what is going on for someone in your condition.” By “condition” she meant cerebral palsy. As usual, I was so taken aback that I didn’t quite know what to do. I just mumbled a response. The doctor’s office didn’t have any sonogram equipment, and the doctor sent us to Queens to have the test. Another doctor (a man) gave us the test in a very small office. The fetus was seven-weeks old. “It” had a heartbeat, but it’s gender was unclear. I loved this doctor, and afterward, I called him to ask if he would take us on as his patients. I explained my interactions with his colleague. While he was sympathetic, he told us that he could not help us because the woman was his colleague and he could not take away her “business.”
I read Misconceptions by Naomi Wolfe. I read Brooke Shield’s memoir. We went to Bradley class. There, I did a 180%. When I started the class, I wanted to have a scheduled Cesarean section. I didn’t know anything about what this entailed. I found out that a cesarean was classified as surgery, if not major surgery. This hadn’t occurred to me. I found out that a spinal tap means that the anesthesiology puts a needle in your spine. And that if you move it can cause a myriad of issues. Even when done in the best way possible, a spine tap can cause terrible headaches. And the fact that I had trouble holding still made me fear the procedure even more. My decision to have natural childbirth wasn’t out of concern for the baby, per se. Although I did know that natural childbirth was best, I didn’t believe that my son would fall into any great harm if I did it otherwise. My goal was a “healthy” child, “sane” mother. Even if it did turn out to have a disability, it wasn’t that big of a deal to me. My decision to have natural childbirth was more a practical situation. I figured that the actual act of giving birth (as painful and scary as it was) seemed easy compared to all the possible surgical interventions. I found a “new” doctor.
Dr. Lee was an obgyn in Chinatown, a pretty traditional doctor. She didn’t blink an eye (and make condescending comments) about my disability. She had a whole other host of complications. She called my birth-plan a “wish list.” She didn’t push too much for the epidural, but she definitely wanted me to follow more medical model of childbirth. She also sent me for an ultrasound in order to find out whether the fetus had any conditions like Down Syndrome; this was a test that I would have never have had if I had been more educated. Whether my child had a disability was irrelevant to me. No, I would have never had that test. But, I did and he was “fine.”
As I got more pregnant, I more and more wanted to go the “natural” route. I found out about the Elizabeth Seton birthing center on 14th Street. Seton was one of the few natural childbirth centers in the country. I called them, cold, without really knowing any of the restrictions of the place. I spoke to a midwife on the phone, and explained my situation. She said that they couldn’t take me because of the palsy. Well, she lied. When I pressed her for information, she told me that if there was an emergency with the pregnancy, I would have to walk to St. Vincent’s hospital, which was a number of blocks away. This clearly didn’t make any sense at all. How could ANYONE in midst of labor get up and walk to a hospital, no matter how many blocks. I was upset, but I had heard that the organization was very strict about having what they viewed as very low risk deliveries, so I chose to stick with the Chinese doctor.
This is what happened. He took off his clothes. He stood before me. He had a lot of hair on his chest, which I don’t really like. I touched his penis. He said, “Do you love my big cock?” I said, “Yes.” Even though I didn’t particularly like it and it was more, like, medium sized. He asked me if I liked lubricant. Not in particular. I mean, I’m not against it. I mean it’s okay. “Yes.” “Yes, I like your big cock.” Is this part of the feeling of a normal woman? The will to be accepted and to please, to just want to get through it. The will to go through with it, but not be fully in it.
Joan Didion remembered every detail of Quintana’s childhood, or tried to. Still, that did not make her flawless. Far from it. At certain points the book got repetitious as if she was trying to conjure memories. Sort them. Refigure them. If there are no memories, do we create them?
I remember the first time he came over when my family was out of town. But it’s afterwards that I want to write about. I took a walk to the tea store. I wanted to share my fortune with someone who worked there. After a little bragging, I decided to go to the local bookstore. On the way, I ran into a woman who was babysitting a girl I knew from the neighborhood who had severe autism. Naima, the young lady, doesn’t really speak, but sometimes she gives me a hug or plays with my hair. I told her caregiver that I knew Naima and her mother. We chattered for a minute or two about Naima. I could tell that this woman thought I was not intelligent. I was exhausted, and I didn’t really feel like getting into it. But, I said something about my husband and child being out of town. She expressed visible surprise that I was married and had a child. Then she told me, “Your husband must be a really nice guy.” She was kind enough to leave out the words “…to marry you.”
The different states of my body. My body in pregnancy. My young body. My aging body. My body in yoga. My body with a “bad” knee. My body giving birth. My body getting married. My body walking. My body asleep. My body next to the river. My body in surgery. My body getting mocked. My body getting commented on wildly. My body being misunderstood. My body being misread. My body walking next to M, down Riverside Drive while he smokes his pipe. My body laughing with Joel. My body holding M’s hand at the party. My body being drunk. My body teaching my students. My body in an elevator. My body sleeping next to my husband. My body laying on the couch while Andrea makes a coloring book. My body falling. My body reading. My body doing laundry.
The vow to only give my body to only one person for the rest of my life troubled me. Once I chose to give myself only to my husband, I was no longer my own. When I am with you, my body is my own. There is nothing about my body that belongs to you, nothing in you that belongs to me.
The facts of my life are minimal, and I’ve named most of them here. I have mild cerebral palsy due to a trauma at birth. I grew up around able-bodied people. My parents divorced. My grandmother died. My mother was found temporarily insane [which is now, perhaps attributed to post-partum depression] and committed briefly to the mental hospital. During those few days my infant sister and I were an orphanage. My father moved to France. My mother remarried. I had many responsibilities and few freedoms. I changed parents. I fell in with the gays. Ashley died. Emma died. Then college: more college. A love affair. A move East, poetry and so on. Marriage. Elizabeth died. Then John & Louis shot themselves. A baby who grew up to be a brilliant, obstinate boy. Dion died. Julia and Sasha were supposed to move back to Petersburg to live together. Sasha and his father died in a car accident. Julia was in the car, but she survived. Julia decided to move to Petersburg without Sasha because that was his home, and she wanted to be in his home. This is also where the car accident happened. Shortly after Julia moved, she died as well.
My parents met when she was fourteen, and he was fifteen. My mother had an affair as a young woman when my father was in graduate school. She confessed this to him in the grocery story. The man’s name was Bill. My father would not forgive her. My father later left my mother for another woman. Her name was Mary. At first we were all together; we lived across the quad from each other in Davis married student housing. I was stung by a bee. I had the chicken pox. I watched the Wizard of Oz every year on channel 4. These are ordinary things.
Truth is known be relative. Let me tell you something that is true: Dion is dead. Emma is dead. John mother is dead. Sasha and Papa died in a car accident. Julia was in the car with them. She lived. But died three years later of cancer. John and Louis shot themselves. Ashley died when I was 19 years old. He was 21, and I loved him so. Eric called on a Saturday morning to tell us Allen had died. The news of Elizabeth’s death came when the roach exterminator was in the apartment, and we thought we would have an ordinary day. My grandfather died, and this made me happy because I hated him. Al died. Grandma died. Muffin died. Laura Hershey died before the book was out. Rambo and Jasmine died. Hammie died in my hand after a week of suffering in my dress pocket.
I always sing my prayers.
I took a number of pills. I called a friend and she said that that wouldn’t harm me, so I took more. I called your father. He came and took me to the hospital. They gave me a medicine to help me vomit. I was sent to your grandmother’s house, but I lost touch with reality and would not speak. It was then that I was admitted to the mental hospital. Your grandmother felt that your father should be responsible for you and your sister, so she would not keep you. Your father had custody of Emma. Emma was always his favorite. He saw her being born, and they bonded. You were supposed to go to foster care. I convinced the doctor that I needed to get out of the hospital to get my children. He allowed a patient to drive me to your grandfather’s work, and from there, I got a ride to Woodland to take you and your sister home.
My husband is trying to help our son do his homework. My son wants to put they to signify a genderless he or she. My husband is sympathetic, but he wants my son to know that he is grammatically incorrect. I keep my memoir in a children’s book titled Grammar Can Be Fun. When you leave me, I will be able to keep books and cats strewn across my bed. You kick the alphabet wrapped up in the sheets that still have my name amongst them.
I flit away.
I want to live my life in poetry. If only I could get my body to be complicit & yet, the legs stay put.
I leaned into sleep in so much pain that I was breathless.
I had plans of how to behave when the social worker arrived, actions. I would yell. I would cling to my father. I would resist. How did you feel when she took me? She was kind & I had empathy for her. Davis. I remember the corner of our apartment building where we stood on the grass. It was sunny. I do not remember her car. The place was in Woodland. It was right before Christmas. It was an old Victorian house. They had horses there. Two? We had our own bedroom. Did my infant sister sleep next to me? They bathed her in the sink. The house was dark and silent. The people were kind. I want to meet the people who were kind to me in the days that I had neither a mother nor father.
The Chowchilla kidnappings happened in 1976. Twenty-six children and a bus driver were ‘stolen.’ The bus itself was concealed in a drainage ditch. My mother told me this story. Every day after school, I was responsible for my three sisters and brother. If I was in tenth grade, they would have been in fifth, fourth, and second, respectively. Every day I waited for my brother and sisters. If they were a moment late, the anxiety would spread throughout my body. I found out recently that the bus kidnappings were true – not something, as I suspected – that my mother told me to keep me on my toes. Now, it is time for my own son to begin walking home alone.