Growing up, my sister Christy, who is eight years older than me, never left the house without her hair and makeup done flawlessly. All of her clothes had to match perfectly with her lipstick. She set the bar for me in terms of appearance, perpetuating notions of how to achieve Southern beauty. She certainly didn’t fit my childish ideas of what a disabled person looked like. I thought our only differences were her incessant ticks and fidgeting.
School was hard for Christy, academically and socially. For years in high school, girls threw the contents of her purse into the toilet, pushed her around, called her stupid and a whore. Once, some girls even threatened to stab her with a metal fingernail file. She left school in the eleventh grade and began to show signs of what was to come.
“Sometimes I feel like a child because of the way I am treated.”
In 2002, I began documenting the life of my sister, Christy, now 43, who was diagnosed with a brain disorder at age 24. I was inspired by another photographer, who allowed his subjects to write their thoughts on their portraits. I decided this was a good way for Christy and me to tell her story together.
After her first psychotic episode at age 24, Christy was officially diagnosed with encephalopathy, a brain disease. I remember her standing behind the kitchen counter red-faced with her fists clenched, insistent that Skeet Ulrich, the actor who played the villain in “Scream,” was stalking her. Another time she thought Harrison Ford was hiding under the house. After that, it was as if our roles suddenly reversed, and I became the big sister who drove us to the mall and the movies. We shared the upstairs rooms with no wall between us, and I worried that I’d find her standing over me in my sleep.
“Sometimes I feel like one side of me daydreams and the other side is scared. Because I don’t know if what is happening to me is real.”
Christy’s brain disease is complex. It involves seizures and psychotic episodes, including hallucinations, delusions and paranoia. Medication keeps her hallucinations at bay, but one missed pill can mean severe paranoia. Once, she called the police because she heard persistent knocking. When the officers arrived, she told them the devil had been at the door.
“Before I went on medication I went around claiming that I had a bunch of children and that someone was trying to kill me.”
One weekend over a decade ago, Christy walked down the staircase of our family’s house. She declared she had three children and that she needed to buy Christmas presents for them. Christy has had a handful of boyfriends, but never kids. “You couldn’t talk her out of it,” Mom said. “It was so real to her.”
Christy, now 44, has lived with our parents her entire life. She had a job for a decade working the evening shift at a supermarket in Goodlettsville, Tennessee. The cost of gas for the commute from our home in Cottontown practically negated her paycheck, but my parents have always tried to cultivate a sense of normalcy for her. Managers moved Christy from the bakery to the cheese shop to grocery bagging, and finally, to janitorial work, which my parents saw as a last-ditch effort to push her out. She was finally laid off during the recession. Now Christy dusts the house, puts away the dishes and folds the clothes in exchange for a weekly allowance. She dreams of having a partner and still puts on her lipstick every day.
“I know I’ll never drive.”
Christy’s Tennessee identification card is just that, with zero driving privileges. In her twenties she complained about not being able to drive. So my mom took her white Cadillac to the empty back roads I had learned to drive on, and told her to get into the driver’s seat. Christy couldn’t remember which pedal was for gas and which was for braking. We all had a good laugh. She never asked to drive again.
“I like the picture because the girls are together and happy.”
In first grade, schoolteachers wanted to test Christy because they noticed deficits. They sent a specialist to the house. She spent half the day with Christy, taking her out on the patio and in the yard. “She was real delicate with it,” Dad said. “She said, ‘I hate to use that word, ‘retarded,’ but I’ve got to use it.’”
“I feel like Shelby on Steel Magnolias when her mom says, ‘you are special, Shelby. There are limits to what you can do.’”
Christy has lived with our parents for over forty years because of her brain disease.
“Sometimes I feel lost and lonely.”
Christy dreams of having a boyfriend and a handful of friends, but cultivating friendships has been more difficult since she’s been out of work. She spends most of her time with Mom and talks frequently on the phone with our aunt. She asks weekly about each of my closest friends and their kids. She sees Ramona, her best friend of twenty years, around Christmas.
“I feel lucky waking up each morning in my own bed. Knowing that I am getting better because the hallucinations don’t happen as much anymore.”
Despite the pillowcase stamp from my mom’s old hospital job seen here, Christy has never been hospitalized for her illness.
“Even though I tend to daydream at times about another life, I am happy.”
Christy often tells corny jokes with such enthusiasm that you have to laugh. My favorite:“What did the mayonnaise say when someone opened the refrigerator? Close the door! I’m dressing!” Despite her illness, Christy remains the most joyful person I know, full of wonder and love.