Together, Yet Going It Alone

Lori Schappell has spent her entire life connected to her twin sister, Reba, at the side of the forehead, with Lori facing one direction and Reba the other. Because Reba is 4 inches shorter and suffers from spina bifida, Lori wheels her sister around on a stool wherever they go.

The miraculous surgery that separated Guatemalan twins in Los Angeles this summer was not possible when the Schappells were children.

Lori, for one, has no complaints.

“I don’t believe in separation,” she said. “I think you are messing with God’s work.”

At UCLA, doctors say the $1.5-million separation has given Maria de Jesus and Maria Teresa Quiej Alvarez their only chance at a normal life. But Lori Schappell said that she and her sister have found a way to fit two rich--and utterly different--lives into what many others view as essentially one body.

For years, Lori worked in a hospital, leaving Reba to sit for hours with a book while Lori packed medical instruments. Lori has since quit her job and now silently accompanies Reba on stage as her sister pursues a career as a country singer.

“I don’t wake up thinking, ‘Oh, I’m a conjoined twin,’ ” Lori said, maneuvering her body as she speaks so her sister can reach a glass of water. “I have two arms and two legs. I’m just a regular person.... I live a normal life.”

On Wednesday, Lori and Reba turned 41, making them among the oldest pair of conjoined twins in the United States. Another pair, Yvonne and Yvette McCarther, were born and raised in Los Angeles County, attended Compton Community College and died together at age 43 nearly a decade ago. Conjoined twins Ronnie and Donnie Galyon, who are 50 and live in Ohio, do not like to talk to the media, according to a relative.

That means any time conjoined twins are in the news, as they were this summer with the Guatemalan girls, Lori and Reba’s phone starts ringing with reporters asking for interviews.

The sisters have appeared on “The Jerry Springer Show” and other TV programs, as well as in the Globe tabloid. They say they now shy away from the media, saying there have been too many questions about sex and too many stories that left them feeling exploited by the modern version of a traveling sideshow.

There’s also Reba’s career as a country singer to think about, Lori said. These days, Reba refuses interviews, greeting journalists with only a polite Mona Lisa smile.

Lori, however, believes interviews are a public service, a way to show that conjoined twins are like everybody else. No matter how many times she says it, the lesson doesn’t seem to sink in.

“In America, we think you can’t be an individual and be joined,” said Alice Dreger, a professor at Michigan State University and author of “The Limits of Individuality: Ritual and Sacrifice in the Lives and Medical Treatment of Conjoined Twins.”

“We think what it means to be an individual is to have a body that is never dependent on another human being.... But if you listen to them, they say they are individuals ... and we should take seriously what they say.”

Throughout the history of conjoined twins, she said, there is not one case in which twins old enough to decide for themselves went through with a separation.

Will Degeraty, a grandfather of formerly conjoined 6-year-olds and the founder of a support group for parents of conjoined twins, said separation, if possible, is the answer.

“Take our twin granddaughters,” he said. “If they would have left them conjoined, it would be terribly miserable on them, and on their parents.”

Lori is faultlessly polite, but this sentiment pushes her chin up in anger, carefully though, as to not to jerk her sister.

“Do not ask us ever again,” she said. “We won’t be separated. We’re fine.”

The only exception, she adds in a matter-of-fact way, will be when one of them dies. At that point, a separation operation would be necessary to save the other twin. Doctors at UCLA who performed the separation of the Guatemalan twins said such a separation is theoretically possible, although each case is different.

Compromise as Instinct

On a typical morning, Lori, always a sporadic sleeper, wakes first. She tries not to move her head, but her restless arms and legs jiggle the blankets and signal Reba.

When you are joined to another person, compromise--in your movement, in how you spend your time and with whom--becomes as instinctual as breathing.

The sisters share a double mattress, with Lori laying lengthwise while Reba and her pet Chihuahua sleep kittycorner.

The bed is tucked into a corner of a sunny living room on the 15th floor of a senior living facility with a view of green rolling hills. Through the window, the land curving around the Schuylkill River mirrors the shape of the twins’ faces, pressed together at the top so Lori’s left eye merges into Rita’s right and sloping away from each other so each chin faces in an opposite direction.

Lori prefers to shower in the evening while Reba likes to start the day fresh. In the morning, Lori wheels Reba to the bathroom--and after years of practice, the twins have a way for Reba to get clean while Lori stays dry. In the evenings, the procedure is reversed.

All day they perform such choreographed concessions, allowing each woman a measure of independence.

Lori likes to eat in restaurants, while Reba gets food to go and eats at home. Lori is a shopper, dawdling at displays. Reba makes a list and is in and out of stores in a flash. Money flies through Lori’s fingers, while Reba saves every penny. Lori throws on whatever is comfortable. Reba carefully selects outfits to complement her country music aspirations. Her hair is dyed auburn; Lori’s is light brown.

“I’m a spur-of-the-moment person, and Reba plans everything,” Lori said. “We’re so different, it’s not even funny.”

In this, the Schappells resemble many sets of twins who emphasize their differences to a world fascinated by their similarities.

Lori, for one, dismisses as “absurd” the notion that twins can sense each other’s pain or read each other’s minds. Take the time Lori sped through the kitchen door and accidentally slammed Reba’s elbow into the wall, breaking it with a loud, awful smack.

“I didn’t feel her pain,” she said. “I heard the crack.”

Unlike other twins, only Lori can walk, and wherever she goes, Reba must follow. Reba calls Lori “Mommy.”

Lori, who said her only goal in life is to marry and have children, fusses over her twin. Reba makes requests in a soft voice only Lori can understand, and the sisters spring into a blur of motion as Lori fetches a glass of water and turns up the radio for Reba’s favorite country singer.

Lori quit her job in 1996, she said, and Reba’s career began to take off. She takes care of the house--cooking; cleaning; and feeding Reba’s two pets, the Chihuahua, Mimi Jackson (after country music star Alan Jackson) and a fish called George.

Reba takes the lead in other ways. She pushed for the women to join the larger world. Reba never was much bothered by the gasps, whispers and double takes, but sometimes Lori squirmed under the world’s gaze, she said.

When Reba wanted to attend college, Lori was filled with anxiety.

“I had everything done for me,” Lori said. “All of a sudden, I was out on my own. We weren’t living with anyone. I was taking care of everything.”

After the first year, Lori wasn’t sure she wanted to return. But walking into the dorm, she looked at the pay phone and took a deep breath.

“I thought, I can do this,” she said. “I can worry. I can get upset or cry. But I have a phone right there, and I can call Mom if I need to.”

Lori trained as a ward clerk and hasn’t looked back. Reba studied medicine, but dropped it to pursue country music.

When Lori and Reba were born in Reading in 1961 to their shocked parents, doctors gave them a year to live.

“Then he put it up to we won’t live past 2, or we won’t live past 3,” Lori said. “Each year he was wrong. We were saying the other day, if he could see us now, we’re ... 41 and we’re still here.”

She declined to speak much about her family, except to say that she and Reba are among eight siblings from a loving and religious family.

Shrugging Off Stares

Separating babies joined at the head was not possible when they were born, Lori said. Their parents taught them to shrug off the stares, saying you look different to other people but to us you’re just like our other children.

Doctors convinced the girls’ parents to put them in an institution, where they lived for 21 years. “We don’t talk about that stuff,” Lori said. “That was not anything anyone had any control over.”

When Lori finished college, the sisters moved into their apartment. They make frequent visits to family but have lived alone for nearly 16 years.

Although their bodies are joined, the Schappells’ apartment is carved up to give each woman her own space.

The front room is Lori’s. Except for Reba’s spotless desk, it bursts with Lori’s clutter. There is a catalog of pet products, an accounting textbook left over from college.

There also are books relating to her interest in finding a husband. “The Idiot’s Guide to Dating,” is marked at a chapter called “Dating Disasters.”

Lori laughed and said that just because she’s a conjoined twin doesn’t mean she can’t have nightmarish dates like everyone else.

The smaller room is Reba’s office. A sign taped to the door reads: “Good morning. This is God. I will be handling all your problems today. I will not be requiring your help.”

Reba’s room is spare, bright and clean, with stuffed animals and bowling trophies from high school on shelves, and religious relics, such as a picture of Jesus, pasted on the walls. The usually ebullient Lori does not talk much in here. This is Reba’s place to be alone, to think and pursue her interests.

The sisters can create this separateness whenever one of them needs it. On those occasions when they aren’t getting along, “We can’t walk away,” Lori said, “but we can ignore each other.”

Or, if Reba wants a private moment with a friend, Lori will tune them out. It’s the same when Reba is on stage. Of course Lori must join her under the lights, but it is Reba who is center stage.

When Lori goes on a date, as she did earlier this year in a rendezvous filmed by “The Jerry Springer Show,” it is Reba’s turn to fade away as much as possible.

The show’s cameras followed as Lori and her date went bowling and to dinner. When the two met up in the studio, Lori was the recipient of a long smooch.

“I am not anything special,” Lori said, again and again. “I am just a normal, average American.”

Wheeling Reba out of her office and back into Lori’s space, Lori’s voice becomes louder, her gestures more pronounced. She is proud of their home. From the cluttered shelves to the kitchen full of Lori’s treats and Reba’s healthy snacks, it represents their hard-won independence.

On this topic, the smaller twin breaks her silence for a moment to express admiration for her sister.

“She could be taking her situation and getting help from people, and she ain’t doing that,” Reba said. “She’s doing everything herself, and making it on her own.”

Again and again, Lori talks of her pride in her sister as well.

Reba has performed in New York and Holland, and has recorded a three-song CD. She does not have a record contract, but Lori is hopeful.

Lori has said she will not talk about her sister too much, but her conversation keeps turning to Reba. “She has goals in her life,” she said. “The only goal I’ve had, and still hopefully have, is to get married and have children.

“I want so much to be a mother,” she said. “I want to go through the morning sickness, the everyday ups and downs.”

Lori knows her dream of children dims with each passing year. She’s had four boyfriends, but none of the relationships have lasted.

“Meeting men is hard,” she said. But not, she is quick to add, because she is a conjoined twin.

“It’s got nothing to do with that,” she said. “It’s normally hard to do.”

About this, Lori is philosophical. “If it’s not meant to be, it’s not meant to be,” she said.

She is content with her mastery of the apartment and the comfortable rhythms of her day.

“Normal is whatever you make of it, but we’re very happy,” she said. “It all comes down to compromise. If more people in life did that, the world would be a better place.”