Her nightgown has to be special, because a comatose patient is difficult to dress. The body, unless exercised, becomes rigid, the bones locked and calcified. So Karen Ann Quinlan's mother, after she buys the nightgowns, cuts them down the back, then neatly finishes the seams. She takes the gowns home to be sure that they are clean and pressed. She doesn't have to do this, the nursing home would do it for her, but, says Julia Quinlan, it is her pleasure to clean her daughter's nightgowns and to buy new ones at Christmas and her birthday.
She visits her daughter daily, lowering the side of the hospital bed to touch and hug her and to brush her hair.
"Hello, Karen," she says when she comes into the room, "mommie's here."
Karen Ann Quinlan, whose name became synonymous with "death with dignity" and a patient's right to die, has been in a coma six years now. Five years ago, the New Jersey Supreme Court rendered a landmark decision that permitted Karen's respirator to be turned off.
On May 14, 1976, when Karen was 22, she was removed from her respirator. Though it is not uncommon for comatose patients to live for months, or even years, she was not expected to live long. Certainly her parents didn't expect her to live for long. They had picked out a plot for Karen even before the court battles began. Now, says Julia Quinlan, her daughter has "surprised everyone." But that does not mean that the family ever hoped that Karen would die, she quickly stresses.
"We wanted her placed back in her natural state without i.v.'s [intravenous tubes] and catheters," she says, "We wanted her to be comfortable . . . she tried desperately to free herself from the respirator, if she could have used her hands she would have . . . but I know I'm really thankful that she didn't die at the time. . . ."
She says this in her home in suburban New Jersey. It's a spotless home with a small white statue of the Virgin Mary on the front lawn and a living room in which the focal point is Karen Quinlan's story. Eight copies of Karen Ann: The Quinlans Tell Their Story are displayed on the coffee table. The cover jackets are placed in all directions so that anywhere in the room they are visible. There are photos of Karen and her younger brother and sister on the walls.
Karen Ann Quinlan is very much a part of this family. Julia Quinlan and her husband, Joseph, have founded a hospice in her name from the proceeds of the book. They lecture on ways to cope with situations such as theirs and during this interview Mrs. Quinlin was interrupted by a long-distance call from someone seeking help for a distraught family. ". . . and if they want us to autograph it, please let us know . . ." she says, in the manner of a person who has become accustomed to being a spokeswoman.
She has been interviewed many times and speaks in pleasant, balanced tones. Forget? says Mrs. Quinlan, a slim, perfectly groomed woman. Why would she want to forget her daughter, that is a mistake people often make when they lose a loved one, not that they (the Quinlans) dwell on it. A strain? Yes, she says, these six years have taken a toll but this is Karen's life and we must accept it.
Other topics such as stories that Karen had a particularly troubled adolescence and that her coma occurred after a combination of alcohol and tranquilizers, she politely but firmly turns aside. The teenage years, she says, are often a time for trying to find oneself.
But there are still flashes of intense feeling as Julia Quinlan, who adopted Karen after a series of miscarriages and the birth of a stillborn son, talks about her daughter.
"It's very difficult, it's taken a toll," she says. "We try to accept the fact that this is it, this is the way her life is, but when I go down there and I see she has an infection and she's grimacing and she can't shout out, 'Mom, this hurts,' that hurts . . . but we can't abandon her. . . ."
Her daughter, Mrs. Quinlan says, suffered brain damage. She can feel pain, according to the doctors, but she cannot comprehend pain. Her hands are twisted in a way a conscious person could not endure. Her body is pulled into a fetal position, though not as much as it had been when she was on the respirator. She seems more relaxed now.
Mrs. Quinlan visits her daughter once a day, her husband visits her twice a day -- on the way to work and again on the way back. The nurses talk to Karen while they make her bed and, when no visitors are in the room, they leave a radio on.
"Chances are she cannot comprehend, probably she cannot comprehend," says Mrs. Quinlan, holding on to a shred of hope. "But you don't know . . . that's why we leave the radio on . . . could you think of anything worse than living in a room, in a dark room, and no one ever touching you, ever holding you . . . imagine you were to wake up after all that time and no one had ever said, 'I love you,' no one had kissed you, you had never even been touched. . . ."
She talks about Karen's younger sister Mary Ellen, who is now 25, about her son John, now 22, who had to move to Arizona for a time to have an identity other than that of being Karen's brother. "They were very, very close," she says. "She taught him to play football and basketball. It was especially hard for him visiting her in the hospital to see her that way. . . ."
She talks about the difficulty the family had the first time they took a vacation and could not go to the hospital to see Karen every day. And, she talks about the way that, now when they go away, Karen's brother, sister or grandmother takes over the visits and "mother does her nightgowns."
She says she has only one wish -- that she can be with Karen when she dies. She also talks about the first time she saw her daughter at the St. Joseph's Home in Scranton. Her son died at birth, she says, and because of the RH factor the doctors thought she could never have any children of her own, so perhaps she should adopt.
Normally that would be a very long process but they were lucky. Four months after the death of her son, Catholic Charities called and said there was a baby. She and her husband drove to St. Jossph's and, as was the custom there, they first knelt in the chapel and prayed. Then the nun brought out Karen and handed her to her new mother.
"Never forget," Julia Quinlan said, "she is a gift from God."