Here are the first few paragraphs:
My younger brother Alex had his first seizure the day after his second birthday. We were sitting on the couch and I shouted to my mother, Alex looks funny. She was in the kitchen and stayed there. I was four years old and prone to inconsequential banter. No Mom, he really, really looks funny. My mother came into the living room and screamed. My brother was on his side, face twisted, eyes open, convulsing. She threw her arms around him.
He stopped. His eyes closed. He went completely limp. My mother couldn’t wake him.
“I thought he was dead. I really thought he had died in my arms.” Sixteen years later, my mother still pauses in between each of her sentences when she tells this story, narrating her thoughts in real time as she watches the scene unfold.
She doesn’t know how long it took Alex to wake up. “Forever.” The ambulance arrived within 10 minutes and took them away. The doctors told my mother Alex had experienced a seizure. He was sent home. Seizures often only happen once.
I recall the rest of that day like I’m reading a scrapbook. I remember running my fingers along the soft white lines that separated the purple gray tiles of the foyer floor in our home. I remember dull thuds, my brother at the end of the stairs. My mother’s screaming, again, louder. I remember running to my neighbor’s house, a nurse, pebbles sticking to the soles of my feet. I remember being lifted into the ambulance.
I don’t remember getting home. I don’t remember my mother crying as the doctors sent her away, for the second time. Seizures often only happen twice.
My brother began having seizures two to three times a week for the next six months. Then he had them daily. He was put on 15 different anti-convulsants. Sometimes he would seize for over 60 seconds and we would watch him turn blue. These moments never got easier to watch.
Alex didn’t develop like other kids. He took longer to walk and to this day can’t speak more than 10 words total. “Mentally retarded.” That’s what countless specialists offered my parents. Nothing else.
After two years of seizures, doctors put Alex on an experimental diet my parents found out about on NBC Dateline. The Ketogenic diet is extremely high in fat and low in carbohydrates. At first, Alex could eat only butter and heavy cream. My parents weighed all of his food to the gram on scales. His growth was stunted and he looked at least three years younger than he should, but his seizures decreased. Days became weeks became months without seizures. Alex is no longer on the diet and still has seizures, but less than once every six months. He is now the tallest one in the family.
On September 12, we celebrated Alex’s first full year without seizures since his diagnosis. He was 18. My mother made him a chocolate cake and we all cheered while he blew out the candles.
The next day I left for school. My entire family came along. My youngest brother and my dog sat in the back of the car with the luggage. Alex sat in the front with my mom. He was the only one of us who wasn’t sad I was leaving. He was the only one who didn’t know I was leaving.
I can’t talk to Alex on the phone when I’m at school. I can never tell him I’m coming home or that I miss him. I can’t tell him why I disappeared from his life for so long or why I will do it again.
He’s 18 now and I’m in my last year at college. I’m trying to figure out what to do with my life and my parents are trying to figure out what to do with Alex’s.
When he turns 22, he graduates from high school and is eligible to live in an assisted living home provided by the state. Will he like it there? Will he be lonely? Will he miss us? Will he think we abandoned him? Did I already abandon him?
At the beginning of October, I read a newspaper article about a resident of Page Mill Court Apartments. Page Mill is an assisted living facility for developmentally disabled adults. The complex is in Palo Alto, just one mile from where I live at school.
It’s strange and painful to think of my brother as an adult. When I left for school he was a boy. He grew up without me.
I had never been to an assisted living facility for people like Alex before. I had never been able to picture a world for him outside of our home, our family.
I went to Page Mill for the first time on October 9. I sat in the recreation room with the manager while the residents filed in at 6 pm. The residents were there to meet me and hear about my project. I was there to understand my brother.
I wanted to ask the residents what it was like to live with a mental disability. I wanted to know if they were happy on their own and how they felt about their families. I wanted to see for myself what life was like for them in the complex. I wanted to see if Alex could ever fit in there.
On October 14, Alex had a seizure while he was walking down the stairs. He fell down the remaining 11 wooden steps and hit his head on the railing. He continued shaking on the tiles. The next day, my mother called.
“Brittany, I never heard a crack so loud. His head… never in my life,” she said. She sounded equally upset and amazed that a body could produce such a noise.
That afternoon I went to Page Mill and interviewed Alfred Bostic for the first time.
*****
When I entered Alfred’s apartment, he was playing classical music on his stereo. I sat down on a couch and he sat on the one across from me. He kept his right hand on the handle of a black cane. The Lord’s Prayer hung above his head.
We talked for a few minutes before I was able to broach the topic of his disability. “So, why do you live here,” was the best I could muster.
“When I was younger, every time it got cold, I would come down with a virus,” he began. It was clear Alfred had told this story many times before.
When he was eight months old, Alfred came down with whooping cough, pneumonia and bronchitis. He slipped into a coma for eight hours. Five and a half years later, Alfred experienced his first seizure and was diagnosed with epilepsy.
That word, epilepsy. Could Alfred tell me what Alex feels? Could Alfred tell me what it’s like to have a seizure? Would Alex be able to live on his own like Alfred some day?
Marian Bostic, Alfred’s 91-year-old mother, has forgotten many details of Alfred’s disability, but she still remembers his coma. “The doctors told me they weren’t sure if he was going to make it,” she said in her small home in East Palo Alto. Her light brown skin is speckled and she has short, white, thinning curls. She wore flowered slippers with white socks. She crossed and uncrossed her fingers, then put her hands on her chin. “They said that was the start of it, the reason for it.”
Alfred still sees four doctors and takes medication. He turned 60 the day before our interview. He had been seizure-free for four years.
Alfred has lived in Page Mill for 10 years. He chose the apartment because of its focus on independent living. Residents meet regularly with counselors to work on life skills such as budgeting and household chores. A recreational coordinator plans social events, but outside of those activities the residents are on their own.
“The thing that made him difficult most of his life is that he was such an independent person,” said his mother. She leaned forward and crossed her legs, “He wanted to do everything all of the other kids were doing, but he couldn’t because he might hurt himself. He was kind of difficult to raise because he didn’t understand that.”
Alfred has light brown skin, like his mother. He has graying, short black hair and a matching goatee. He is tall, even when he is leaning on his cane. He is subdued and has a soft, even voice. He rarely changes his tone or expression.
He used to set up chairs for events at the Stanford music department. He retired this past year because of his health. Now he spends much of his time as the coordinator for Stanford’s Best Buddies chapter, a program that pairs up adults with intellectual disabilities with student volunteers. He is also a member of the men’s choir at his church.
“He always liked to sing,” his mother said. She paused, and then began to smile. “He used to sing Nat King Cole songs. He used to sing ‘They tried to tell me I was too young’—oh he loved that song.”
While Alfred is seizure-free, he has unstable blood pressure and balance problems. He underwent surgery because of a broken neck that he didn’t know he had. It may have been one time when he fell on the steps outside of his apartment. Or it may have been that last seizure he had four years ago.
Alfred said he was about to take a shower when it happened. He hit his head and was knocked out in the bathroom. Phone calls and knocks went unanswered. Neighbors thought he was staying with a friend. Three days passed. Alfred’s older brother finally showed up at the apartment. The staff opened Alfred’s door and they found him on the floor, still unconscious. He was rushed to the hospital.
Even as he told this story, his voice remained even and calm. The only adjective he used was “wet.”
*****
Alex has never been left alone for three days. He’s never been left alone for three hours. Three minutes is sometimes too long.
During my first Thanksgiving break home after I left for college, Alex went missing. My mother was cooking dinner and Alex was in the driveway playing in my father’s truck. Alex loves cars.
He was there. My mother started the pasta. He was gone. He wasn’t in the garage. He wasn’t in the living room. He wasn’t in my parents’ room. My sister checked upstairs, my other brother checked downstairs.
My mother yelled, “We can’t find Alex,” maybe to me, maybe to anyone. I was watching television in my room. I came downstairs.
My mother seemed both emotional and mechanical at the same time. Lindsay is checking the streets. Paul is in the backyard. You check the river.
The river? I ran outside without wanting to run, without wanting to move. Alex can’t swim. But God, could Alex drown?
Seconds didn’t feel like hours. Seconds felt like nothing. The river seemed empty, the dam undisturbed. The water was a shiny black.
I heard my sister call my name. I looked at her coming up the driveway. She looked at me. Neither of us had Alex. Neither of us said anything.
My youngest brother Paul came running out of the front door. “I found him. We have him.” Alex was in the basement. Someone had left it unlocked.
I waited for my sister and we both walked to the house together. My mother finished making dinner. Alex went back to the truck.
*****
Page Mill Court has 26 residents, ages 22 to 60. Almost all of the residents have their own rooms with a bedroom, bathroom, living room and kitchen. There is a common recreation room, kitchen, computer room and courtyard.
Parca is the organization that oversees Page Mill. The company provides residential programs throughout the Bay Area to help people with disabilities live as independently as possible.
Laura Frain is 58. She lives one floor above and one door over from Alfred. She is four feet and 11 inches tall and 98 pounds. She has light blue eyes and long, graying brown hair that she always wears in a low ponytail.
Laura wears at least one ring on every finger except her thumbs. She wears gold-rimmed glasses and a combination of lanyards and long necklaces that hang down to her waist. She has two stuffed animal otters that she likes to hang from the lanyards.
She smiles a lot, but moves in a nervous manner, almost scurrying. Laura has been mentally retarded all her life.
Laura’s mother was allergic to morphine. The doctors gave her a shot of Demerol, a morphine-derived drug, while she was in labor. Mrs. Frain fell into a semi-comatose state and the morphine crossed the placenta and entered Laura’s lungs. When Laura was born, she was blue.
One of Laura’s lungs had collapsed and she was getting half the oxygen she needed. It took the doctors three days to put her in an incubator after a family member’s insistence. By then, Laura’s brain had been permanently damaged.
Laura was the most excited of all the residents to talk to me. “Someone wrote about my sweet Mom once and I want to be just like her,” Laura told me on our first day. Her mother spent her last few years in Stanford University’s hospice program and was featured in a photograph in Stanford Magazine.
Mrs. Frain was very protective of Laura and always kept her close. “Because I’m the baby of the family, we were always together,” said Laura. “She took me bowling in the bad weather every day. She took me to activities and that’s how I remember her by.”
When doctors told Mrs. Frain to put Laura in an institution and move on, she refused. When there were no school programs for mentally retarded children in Akron, Ohio, their hometown, Mrs. Frain found other mothers like her and demanded one. The county created a day-care schooling program for the children.
Laura’s older sister, Helen, lives in Palo Alto within 10 minutes of Page Mill. “It was a big burden on my mother,” Helen said, sitting cross-legged in an antique chair. “It’s like having a perpetual child and knowing this child will never grow up.”
Helen is very petite, like Laura. She’s seven years older than Laura but looks five years younger. She has gray-blue eyes and brown hair with blonde highlights. She wears blush, dark pink lipstick and deep purple eye shadow. “My mother’s greatest fear is that my sister would outlive her and that’s of course exactly what happened,” Helen said, turning her wrists while she spoke.
Veronica Fraine died at 10:40 p.m. on March 10, 2006. “My mom before she died, she told me no, not to visit her,” said Laura sitting on the couch of her apartment. She doesn’t look at me when she talks and twists one of her rings around her finger. “Because if I was there, she’d keep on breathing—stop and breathe, stop and breathe, stop and breathe. So she told me not to come.”
Laura waited for my next question.
*****
Alfred is more independent than Alex will ever be. He cooks for himself, he manages his money and he takes care of his own apartment.
Alfred meets with his counselor Aimee twice a week to work on his life skills. Aimee is much shorter than Alfred, with short black hair to just below her ears and light skin. This week, Alfred lost his ID and his Social Security card. The last time he used the ID was at Mollie Stone’s, a local supermarket.
“Are you moping now?” asks Aimee.
“No, I’m not moping.”
“You could’ve fooled me.”
Aimee is looking directly in his eyes. Alfred is looking down. He left arm is propped on the armrest, his face supported by his balled fist.
“I’m just kind of disappointed with myself,” he says.
“I know I can tell.”
Alfred and Aimee are sitting in two swivel chairs facing each other in Page Mill’s office. It is a small, cluttered room. There is one window with white blinds, barely noticeable from the white walls. There are two oil paintings of flowers in vases.
Both are leaning back in their chairs. Aimee is wearing a black sweatshirt from a Madonna tour, Alfred a black t-shirt that says “T Birds” in big white letters. Both are wearing black Velcro tennis shoes—Alfred’s with extra support for his arthritis, Aimee’s a fashion statement from Puma. Their postures are almost an exact mirror.
“When did you find out you had lost it?” asks Aimee.
“Thursday.” Alfred switches arms, leaning to the right now.
“Now I’ve been trying to find something else to do, something to take it off my mind.” Still no eye contact.
“How long are you going to allow yourself to be disappointed?” Aimee leans forward in her chair, halving the distance between their faces. Her shoes slide to within inches of his.
“Like I said, instead of being disappointed, I’m just going to have to find something to do.”
“ How about letting it go?”
“Mhmm, that’s what I said.” Alfred is barely audible.
“Finding something to do sounds like a distraction, not letting it go. Why don’t you try letting it go?”
Silence.
*****
Laura was Dorothy from The Wizard of Oz for Halloween this year. She wore a red wig with pigtails and blue ribbons. The synthetic locks were as frizzy as her natural hair. She wore a blue and white-checkered dress over a white shirt with puffy sleeves. Her black t-shirt was still visible underneath the costume. She wore purple sweatpants and a pair of red glitter shoes over bulky white socks. She carried a wicker basket with her own Toto inside, an old, brown stuffed animal dog from her collection.
Almost all of the residents went to Page Mill’s Halloween party and every one of them came in costume. David was Spider Man, Alfred a cowboy, Julie a witch.
“This is my Dad’s,” Patrick told me pointing to the blue scrubs he was wearing. “This is his too,” he added holding up a stethoscope. Patrick told me that his brother just had a baby. He’s told me that every time I’ve seen him.
The recreational coordinator was leading games outside. Only four residents joined her, including Laura. “C’mon guys, come and play some games with us,” Laura yelled inside. Laura is one of the few residents who always seems enthusiastic about the activities. The doorway remained empty.
The game was simple. Stand behind a line and throw a blue hula-hoop around one of three pumpkins. Laura stepped up to the line. She looked back at me and smiled, then focused her attention on the pumpkins.
“C’mon baby, you can do it, you can do it,” she muttered. Laura encourages herself with simple mottos when she goes bowling too.
She tossed the hoop. One edge hit the pumpkin and the hoop slid to the right side onto the concrete. Laura threw her hands down at her side, but was smiling.
She turned around and started talking to me as if resuming a conversation.
“You know, you can come talk to me again in my apartment, anytime, you can come.” She was smiling up at me and toying with a blue bracelet. Even in her Dorothy slippers she was four inches shorter than me.
I would like that, I tell her. Can I come visit you at work some day too?
“Oh yes, and you can meet Eugene and Scott. I’m going to tell them all about you tomorrow.” She had stopped looking at me. She seemed to be talking to herself. “I’ll tell them all about you and they will want to meet you.”
I’d like to meet them too.
“Oh yes, you’ll meet everyone.” She stopped playing with her bracelet and looked straight at me again. “Can you give me a hug?”
*****
The first time I visited home after leaving for college, Alex wouldn’t hug me. He would hardly look at me. He didn’t understand where I had been or why I had gone. I left. He understood that.
My mother told me he would get over it, to just wait it out. I’m his sister. He will forgive me. He did. The next day I left for school again. He gave me a hug goodbye.
It’s gotten better every time. Now Alex seems to have gotten used to me slipping in and out of his life. I’m the one having trouble adjusting to our seasonal relationship.
I worry about how he’s doing when I’m away, if he’s safe, if he’s happy. I always wonder if it will ever get any easier. Will I ever get used to the idea of Alex being away from me, and someday, from my family? Will it ever feel like we made the right choice?
For my mother, each day is its own struggle, and no, it’s never gotten easier. “I still worry about him today as much as I worried about him the day he was diagnosed,” she says. “I get so sad. I’m the only one that can take care of him the way he needs to be taken care of. He can’t talk. He can’t tell them.” She pauses.
“I worry that no one else will be able to do what I do.”
*****
“Oh I worry about Laura all the time,” says Laura’s sister, Helen, shaking her head from side to side. “I have a compartment in my mind that handles that.”
Helen used to call her sister every day to check in with her. Laura told her counselor that it made her feel like a baby. The counselor told Helen to stop. She now calls once a week.
Helen closes her eyes for a moment. “Laura and I…” she stops. “I’m still the bad cop and the fate worse than death for Laura would be if she had to live with me.”
Helen says Laura was their mother’s sidekick. They were always together. Laura’s father was an alcoholic who avoided being in the same room as Laura. Laura’s brother kept his distance. Helen was left with the role of disciplinarian.
Laura and Helen shared a room growing up. Helen says they were like any pair of sisters. They drew a line with masking tape on their bedroom floor and never crossed it.
Their relationship changed when Laura was in her early 30s and learned about the rights of mentally retarded people from some of her friends. Her mindset was reinforced when she moved to California. Now every time Helen tells her sister not to do something, Laura responds that it is her right to do whatever she wants. A few years ago, Laura exercised her right to run up $7,000 in debt.
Helen spoke to Laura’s counselor about the incident. “She goes, ‘you know she has the right to have credit cards and to do that,’ and I said but she can’t pay for it. She goes, ‘well some of my other clients have bigger debts then that,’” Helen says. She grips the arms of her chair and pretends to shake in fear.
Helen is afraid of more than just credit card debts. Laura has an emotional attachment to cars and anyone who drives them as a living. She often treats vehicles like people and spends hours each day watching them and talking to them.
“My mother was very concerned about Laura being mugged, abducted, victimized by anyone who happened to have a van,” says Helen. “She knew that if a person in a bus or van pulled up and said, ‘would you like a ride,’ Laura would get in without a moment’s hesitation.” Helen still has that fear.
*****
Laura walks down the stairs outside her apartment at 5:33 one Thursday morning. She grips the black railing and leads with her left foot, placing both feet on each stair as if injured.
She walks through the parking lot to the street where Page Mill’s van is parked. “Hi buddy,” Laura says, then walks over and hugs the van. Laura looks like a large, colorful balloon against the white paint. She’s bundled in a sweatshirt, two coats and a winter hat. It’s still pitch black and we can see our breath.
Laura works at a Tyco Electronics factory in Menlo Park, one town over from her apartment. She constructs cardboard spools, assembling the three components and gluing them together. Sometimes she is in charge of counting the spools. Fifty make a batch. The spools are sent to another factory to be wrapped in wire.
Laura leaves her apartment at 5:30 a.m. for work every morning. “I’m not a happy person in the morning,” she tells me after brushing her teeth. If Laura went straight to work, she could leave at 8.
She could take one bus and one shuttle to work, but she takes two buses so she can stop at the Palo Alto Cal Train station and watch the buses and trains. Stanford’s buses, the Marguerite shuttles, are her favorite.
Laura carries a plastic bag. She fills it with eight copies of the Palo Alto Daily News and the Daily Post. She keeps one of each for herself and gives the rest to her friends at work.
The day before, Helen told me that she knows Laura often leaves her apartment at 4 am, sometimes barefoot, so she can get the newspaper as soon as it hits the stands. “I know that she carries a lot of cash with her,” Helen said. “I’m afraid all the time that something will happen to her.”
Laura talks the entire time we walk to her bus stop. She tells stories about people from work. More than 15 minutes pass before she looks at me. She never says my name. We reach the stop right before 6 a.m. and we wait.
Helen wanted Laura to live in a dormitory-style home in Menlo Park where she would have more supervision and social interactions. “She’s basically alone in Page Mill,” she said. “She walks into that apartment at night and she turns on that TV and she’s alone.”
Helen has given up trying to intervene. “The more I would try to supervise her, the more she would withdraw. I’m trusting the professionals who say why she’s perfectly capable of living on her own.” Helen uncrossed her fingers and pretended to zip her lips.
I wonder what the professionals will say about Alex.
*****
Alfred wrote a letter to himself five years ago. He keeps it in a stained red folder in his apartment. His large cursive words fill three sides of lined paper. He tells the story of his life in large paragraphs. On the last page, there is a small section, centered and set off from the rest.
I know I’m sombody.
God don’t make
“junk”
Your brother in christ
Alfred Jerome Bostic
*****
Alex communicates desires and emotions. He has never said “Mom” or “Dad,” but he can say, “I want this.” He signs, yes, no, all done, help and more. He waves, shakes hands, claps and hugs. This is the limited world I see my brother in.
But this not the world he lives in. Alex has a job now. He started working at school sorting silverware two years ago. He works for a few hours each week in his classroom. Once he graduates, he will continue his work at a factory.
He also got a new aide. Tim is 20. He takes Alex bowling with his friends and even took him to visit his sister in the hospital. When my mother told me this, I waited for the horror story. The last time I tried to take Alex to a new place on my own, I ended up calling my mother in tears. I couldn’t get him to leave the car. When I tried, he pushed me into a shopping cart. Tim said Alex didn’t try to run away. He didn’t touch anything or collapse on the floor. He was fine.
Laura’s mother could never quite wrap her head around Laura being independent. “It never even crossed her mind that Laura could live alone,” Helen told me. Laura moved into Page Mill the year before her mother died.
Alfred’s mother knew he didn’t like people worrying about him. “He didn’t want to be treated like a sick person, so I tried not to do that, even though I wondered where he was and why,” she said, squinting her eyes as if struggling to remember. “He never knew how concerned I was. But I think that helped him to be the best he was, because he knew I trusted him.”
Alex may not ever be able to be as independent as Laura or Alfred, nor would he be able to live in a place quite like Page Mill, but he is more independent than I will ever give him credit for.
When Laura’s mother used to get upset thinking about Laura being away, Helen would calm her down. “If you think about it too much, it’ll drive you crazy. Just relax, take a deep breath, and pretend she’s at college.”
*****
Three little girls run into the empty courtyard of Page Mill. “Where is he? Where is he?” they shout over each other. Their parents follow not far behind. Two of them carry pizza boxes.
A little boy runs out from the center of the adults. “I thought there’d be more games.” He catches up with the girls.
They all approach an apartment on the first floor. One of the girls runs up to the door and pushes the doorbell. Another starts knocking.
“Alright, give him a minute,” says one of the adults. “He might not even be here yet.” They wait. One of the girls starts ringing the doorbell again and the other two move back towards a set of stairs.
A short, stout man with gray hair walks through the courtyard. He is wearing a plaid collared shirt with a navy blue v-neck sweater. He has on jeans and white shoes. His eyes are nothing more than slits with his large smile.
He leans over as he gets closer to the girls by the stairs. He grabs their sides and they squeal and run away.
“Patrick, there you are!” The adults all crowd around him. Some give him a hug, others a pat on the back and a handshake. Everyone is laughing or smiling. Patrick doesn’t say a word. He goes to the front and opens his door.
Everyone shuffles inside. The girls’ yells can be heard from outside and their silhouettes dance in Patrick’s window, a beacon in the dark courtyard.
They all emerge after a few minutes. Patrick comes out last, following the running children.
“Sophie, you can’t catch me,” yells the boy. She can’t. The children are the first to leave the courtyard.
The adults follow, but an older couple stays behind with Patrick. The woman puts her arm around him and they walk to the recreation center. They talk in low voices.
When they get close to the door, they stop. Both adults hug Patrick. He nods his head at something they say and then goes inside.
The woman turns around and starts to walk away, but the man steps up to the door. He puts his hand to his forehead and presses it against the glass window, squinting. He watches for about 15 seconds. He turns around.
The man walks to the woman who is a few paces away. He puts his arm around her waist and they walk toward the parking lot, disappearing around a corner.
“My family came to see me,” Patrick told me later. “Did you see them? They came to see me.” The smile still hadn’t left his face.
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