When Mikey is young, the Sullivans are a closely knit unit, all of them devoted to caring for her. But as Mikey grows older, she also grows increasingly violent. By the time she’s twelve, institutionalization is the only available optionand without the shared purpose of caring for Mikey, the family begins to unravel.
As her family falls apart, Teresa searches for relief and connection during a time of sweeping cultural change. Lacking maturity or guidance, she makes choices that lead her down a sometimes-perilous path. But regardless of the circumstances at home and the tumult in their individual lives, the Sullivans are united in their love and concern for Mikey.
In Mikey and Me, Teresa interweaves her exceptional sister’s journey with her own, affirming the grace and brutality of Mikey’s life, and its indelible effect on her family. Unflinching and insightful, this is a deep exploration of the relationship between two sistersone blind, with profound developmental disabilities, unable to voice her own story, and the other with the heart and understanding to express it exquisitely for her.
|Publisher:||She Writes Press|
|Product dimensions:||5.40(w) x 8.40(h) x 0.80(d)|
About the Author
Teresa Sullivan is a registered nurse with a master’s degree in business administration. She has worked as a clinician, educator, and director of treatment programs specializing in addiction and mental health. She lives in Santa Monica, California with her adopted dogs, Danny, Maya, and Kate.
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Mikey and Me
Life with My Exceptional Sister
By Teresa Sullivan
She Writes PressCopyright © 2017 Teresa Sullivan
All rights reserved.
The house I grew up in looked like any other on the block. It was a rose-colored, stucco, three-bedroom ranch-style house on an extra-large lot in a middle-class neighborhood in Santa Monica, California, about three miles inland from the Pacific Ocean. There were white shutters on the windows, a shady covered front porch, and a huge living room picture window that Mom decorated with snow-in-a-can "Happy Holidays" at Christmas. A white wrought-iron gate protected the entrance to our huge backyard, which was enclosed by a cinderblock wall. A mass of untended pink geraniums flourished all along the other side of the house. The driveway was large enough to park our tan-and-white Ford station wagon and an old blue Lincoln.
Inside, there was food on the walls, particularly in the dining room. Canned shoestring beets stuck stubbornly to the pink and gray wallpaper. Some of the stains had been there for years. Black and virtually impossible to remove once dry, they blended well with the thin black lines in the pattern.
Dad had painted the rest of the walls in the house a high-gloss tan. Naugahyde had replaced fabric furniture. My grandmother bought us brown linoleum that looked like pebbles, and it covered the floors throughout the house. Everything could be easily swept and wiped clean. The wallpaper in the dining room was all that remained from the days before food was airborne, and it no longer went with anything. Maybe it reminded Mom of when she first decorated her new home, happy and optimistic about raising her girls here.
Even when my sister Mikey was eight years old — one year older than I was — she was like a two-year-old. She didn't speak. She was brain damaged. That was the diagnosis given by a neurologist. She was blind, too.
Flying beets were not the only food adorning our walls, but they were the most plentiful. A brief foray into the kitchen refrigerator yielded a handful of the squishy red vegetable that Mikey had flung during a gleeful spin around the room. With a broad grin on her face and her arms swinging, she squeezed the beets between her fingers and they landed everywhere. Then, in a paradox of manners, she wiped her hand clean on her hair. Sometimes she flung food in a fit of frustration, moments before she clenched her forearm in her teeth, tearing at the flesh.
We never moved the furniture — not even a little bit. Everything was pushed up against the walls. There were no rugs or coffee tables, nothing Mikey could bump into or trip over. Keeping the rooms safe and predictable allowed her to move easily around the house. We were all responsible for keeping doors wide open; a partially open door meant Mikey could smash right into it, face first.
The dining room contained only two pieces of furniture. One, a large, overstuffed, armless black Naugahyde chair, Mikey's chair, was pushed into a corner. She sat in her chair for hours, squeezing Play-Doh between her fingers or bending the lid of a tin can back and forth until a piece broke off and fell to the floor. Without pausing, she continued to bend, working on a new piece. There were small cuts on most of her fingers. She rocked and bent for hours. We didn't take her treasures from her. She enjoyed rifling through the kitchen trashcan to find them and bending seemed to make her happy, to calm her.
In another corner of the dining room stood an antique china cabinet, a family heirloom. It was a golden-oak color with carved lion's feet and a curved glass door. My grandmother had purchased it when she got engaged. It was an expensive indulgence and the nicest thing she ever owned.
After her parents died, Mom brought the cabinet to California from Illinois, had it refinished, and slowly filled it with pieces of pottery and china, including a pair of Santa Claus cups. Mom filled one of them half-full of milk every Christmas Eve, and we set it out, along with a plate of cookies, for Santa. I knew he had come, not only because there were presents, but also because on Christmas morning the cup was empty and Santa had eaten all but half of one cookie. A beautiful china pitcher, painted with purple grapes and green vines, sat on the middle shelf, surrounded by six cups — each painted with a different fruit. My grandmother could never have afforded such fine, hand-painted china and neither could we. I'll bet Mom came across them at one of the auctions she loved. Sometimes she found bargains that she sold for more than they cost, supplementing our income.
It is a mystery to me how the china cabinet remained intact through the years or why it resided in Mikey's favorite room. She could have easily destroyed it during a rampage of biting and flailing. Perhaps it was a defiant line in the sand of adjustments that had to be made to accommodate her.
Mom told me years later that when we first moved into our house in 1955, when Mikey and I were still babies, she visualized our large eat-in kitchen as a center of activity. We would gather every night to share a hearty meal and the events of our day. There would be no distractions, like newspapers, because we would listen to each other. And we would be expected to be on time, and would be, because we'd want to be close with our family. Instead, meals came to represent everything that was different about our home and were a reminder of everything that would never be.
One dinner, when I was seven, stands out. I set the kitchen table with mismatched Melmac dishes and plastic glasses — nothing breakable. I relished my time alone with Mom, working together to get dinner ready. I told her about my day at school, and she asked occasional questions or offered a bit of praise as she bustled about tasting this and that, making final seasoning adjustments. The scent of cooking onions filled the room when Mom opened the oven door. Pot roast nights were Dad's favorite.
When Dad came home from work and strode into the kitchen that night, he kissed me on top of the head and asked, "How's the terrier today?" Terrier was his nickname for Terry, as I was called back then. I only had a few minutes to talk before Mikey came in, so I spoke in a rush.
Mom and Dad exchanged a few words about how Mikey was doing. They never touched. When he took his seat, Dad opened the evening paper for a brief glance at the news before dinner.
With her Camel dangling from the corner of her mouth, Mom carried our meal to the kitchen table: salad with Thousand Island dressing, pot roast, bread, and oleo. I called out, "Mikey, dinner's ready. Come to the kitchen." She found her seat nearest the kitchen door and sat quietly in the orange plastic chair with her knees pulled up against her chest. Mikey was slender, with fine features, more delicate than mine, and pale translucent skin. Her chin-length brown hair was messy. She was pretty, except for her eyes. They were sunken with no color, only darkness and patches of white.
With Mikey seated, it was time to be quiet. We didn't speak much at dinnertime. It was usually best to keep sensory stimulation to a minimum. Sometimes conversation, a chair dragged across the floor, or the refrigerator door closing overwhelmed Mikey, and she couldn't sit still, couldn't eat, or started biting herself. Some nights we fed her later, after our dinner.
I helped by preparing Mikey's plate with small pieces of cut-up meat, wax beans, and strawberries. Finger foods — nothing too mushy.
It was evident, knowing and observing her, that Mikey's senses of taste, touch, scent, and sound were heightened. She stilled when she heard the dish set down on the table in front of her. I told her what was on her plate, and she felt for a morsel then picked it up with slender fingers, her pinky daintily extended. She smelled and tasted tentatively. A strawberry. A slight smile crossed her face, as though she was saying "mmmm" while the complex flavors washed over her taste buds.
If she didn't want something, she held it out for someone to take, as if saying, "No, thank you. You can have this." Some food inevitably landed on the floor.
That night, she sat quietly rocking and ate most of her food, then popped up and left the kitchen.
A moment later, the kitchen light went out. Dad called out, "Mikey!" We heard a giggle from the next room, and the light came back on. After we had resumed our dinner, the light went out again. "Mikey!" Mom and I both chimed. She reached around the kitchen door to flip up the light switch, giddy with pleasure. She couldn't see the light, didn't know what light was, but it was great fun. The game went on a few more times, all of us enjoying the play.
After Mikey left, my parents and I could talk. That night, the mood was light as we laughed about Mikey's discovery. We were all delighted by her happiness.
Sometimes, on warm evenings, the neighbor's chubby black dachshund, Jasper, would pad into the kitchen through the open back door. With his nose to the ground, he'd purposefully head straight for Mikey's empty chair. On the floor underneath, he'd find his snack. I always enjoyed his visits, although he was much more interested in the scraps of food than he was in me.CHAPTER 2
marcile & jim
Mom had a life before she had Mikey and me. I knew because she kept it in the big bottom drawer in the hall, the deepest drawer, underneath the built-in cupboard where we kept sheets and towels. When I was a little girl, I'd plop on the floor, when it was still covered in nubby, gray carpet, and wiggle the sticky wood drawer open to reveal a treasure box of photographs. There were so many that I had to push them down to get the drawer closed again. Mom often sat with me, and as I picked one at a time, told me the stories behind them.
There were pictures of Mikey and me seated in a double stroller. Mikey was clapping her hands, playing patty-cake. I was chubby. That photo was taken during happier times, hopeful times when it seemed like blindness was Mikey's only problem. Mom told me that, when they took us out for a walk, Dad used to walk backward facing Mikey and me in the stroller so that he could look at us. And he beamed when strangers exclaimed how cute we were.
I found yellowed, cardboard photos of severe-looking women with their hair pulled back, dressed in black up to their chins. These were Mom's grandmothers and great-aunts. They were German Lutheran — solemn farmers' wives — and taught her that it was downright selfish to seek happiness.
In my favorite picture, Mom, her name is Marcile, was about five years old and a shoeless ragamuffin. She was sitting bareback with her six-year-old brother Don on Old Babe, a huge white horse. They rode Babe to the one-room school in their small town of Cullom, Illinois. Mom told me stories about growing up on a farm. They had an outhouse and used pages from the three-inch-thick Sears and Roebuck catalog for toilet paper. I learned about the hobos who came looking for work and food during the Depression, about having to give away egg-sucking dogs if they couldn't keep them out of the chicken coop.
In another picture, Mom's parents, Dora and Earl, posed in front of a barn, a small tractor nearby. Mom described her mother as a strong woman with progressive ideas about farming. Her dad had a short fuse and might have kicked a kid in the rear for a smart-alecky comment. Her big brother, Don, was strong. When they were young, she had to learn to hold her own with him. He grew up to be a hard-working farmer and a heavy drinker. Phyllis, the baby of the family, came along when Mom was eleven. Big Jim, their gentle giant Newfoundland, used to pull Phyllis in a tiny cart.
Mom grew up where there was a community of friends and relatives who were always willing to help each other get the crops in on time. When they finished the hard work on the farm, there were dances and card games.
But Mom didn't want to stay on the farm or live in a small town, so when she was twenty-one, she moved to California to stay with an aunt and uncle who lived in an apartment above the carousel on the Santa Monica Pier. There were black-and-white glossy photos of her standing in front of her first car, a Ford. She was twenty-two years old in 1937 and on her first trip back to Illinois from California.
When I rummaged through the memory drawer, I found pictures of Mom in California. She posed with her best friend, Blanche, in huge sombreros during a trip to Tijuana. Mom always held a cigarette, looking like a sophisticated movie actress. She worked in Westwood as a secretary for a medical doctor. And she went dancing at the Aragon Ballroom or the Casino on Catalina Island. Her life felt as real to me as my own. Even now, decades later, I feel nostalgic for a time before I was born.
My dad's life wasn't as vivid to me. There weren't nearly as many photographs. My Mom couldn't share the feeling and flavor of his life because they weren't her memories, but she shared the details. My Dad, Jim, grew up in Chicago. He was two years old, the youngest of three boys, when his father, an attorney with political aspirations, died. Mom said the death seemed to be shrouded in mystery, although the official story was that my grandfather slipped on ice. Dad and his family weren't ones to talk about personal issues. Nora, his mother, raised her sons alone, supplementing her widow's pension by renting rooms to boarders. Having been raised by a rigid widower father who had little time for her, Nora had a limited repertoire of mothering skills.
Dad was the rascal of the family — a troublemaker who was always provoking the ire of the nuns at school. Drinking and fighting at a young age were common in his Irish neighborhood. But he was smart and did very well academically.
Dad and his brothers enlisted in the military after the attack on Pearl Harbor in 1941. John, the oldest, joined the Army and served in Europe. Joe was an Air Force pilot and became a POW in Germany. My dad served in the Marine Corps. I loved the 8 x 10 picture of him in his Marine Corps uniform — a young man of twenty-three, his dark hair neatly combed back, an easy smile. The black-and-white photograph was tinted with a bit of color, as was the style in those days.
He was injured while fighting on Guadalcanal — shrapnel in his neck — and received a Purple Heart.
Back in the memory drawer, there were strips of one-inch pictures taken in a ten-cent photo booth on the Santa Monica Pier. Some of them were of Mom and Dad, smiling for the camera or gazing at each other.
I always looked for the picture of my parents taken on the day they were married. They sat close together on the steps of their home, smiling for the camera. The photo was black and white but I knew Mom's dress was blue with an ivory lace bodice because it had since been hanging in our hall closet. My parents hadn't known each other long when they married. I often asked Mom to tell me the story of the night they met.
It was 1943. The United States was fighting World War II in the Pacific and Europe. Mom was twenty-eight and Dad was twenty-four. He was on leave from the Naval Hospital in San Diego. In addition to his combat wound, he had contracted a severe case of malaria as well as tuberculosis. He and his friend Red headed for Santa Monica for a night out. They were happy to be alive and glad to be back in the USA. After growing up in Chicago's harsh climate, California seemed like heaven.
Excerpted from Mikey and Me by Teresa Sullivan. Copyright © 2017 Teresa Sullivan. Excerpted by permission of She Writes Press.
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Table of Contents
Part 1 Bits of Beets and Tadpoles
Marcile & Jim 8
Early Years 21
Alone Together 48
Fourth Grade 60
Mom & Dad 67
Part 2 Intersections
Winding Road 81
Dear Diary 85
Perfect Storm 94
Mikey's Bliss 107
Peter & Jim 110
Coming Home 134
"Call Me Father" 154
Part 3 Interlude
Intensive Care 167
In the Hospital 171
Recovery and a Trip to Europe 177
Hole in My Head 187
Part 4 Passages
Double Life 191
Last Chance 199
Red Satchel 211
Little Darling 221
Resources I Discovered after I Completed Mikey & Me 237
What Siblings Would Like Parents and Service Providers to Know 239
About the Author 247