AIDS Work Next Challenge for ‘On Death And Dying’ Author : Elisabeth Kubler-Ross Hopes to Overcome Prejudice, Establish Hospice on Her Virgina Farm
Dr. Elisabeth Kubler-Ross nestled into a 250-acre chunk of these Shenandoah hills a few years ago as “my own healing place,” a paradise where pines pierce the sky and lambs are born. She named it “Healing Waters.”
At last, after two decades of relentless work with the terminally ill, here was a chance to kick back and play farmer--a dream since her girlhood in Switzerland. She even bought herself a red clunker of a truck to tool around the terrain.
The doctor-author, whose landmark “On Death And Dying” first outlined the five stages of coping with death, from denial to acceptance, has created an abundant sanctuary of life here in the backwoods. Geraniums and tomatoes sprout year-round in her greenhouse, peacocks and burros romp free.
But so much for the fantasy.
Instead of settling into tranquil golden years, Ross, 62, is in the thick of her toughest assignment. Her new book, “AIDS: The Ultimate Challenge” (McMillan, $17.95), based on her work with AIDS patients that started in 1981, is a challenge with no end in sight.
Royalties from the book go to the Elisabeth Kubler-Ross Center she has established on the property, a place to train staff and hold small workshops.
“When I look back at my life, I realize that all my work with dying children and grownups was in preparation for this AIDS work. This is my real work,” says Ross, a 5-foot firecracker in jeans, a white sweatshirt and manure-caked hiking boots. A blue wool headband circled with pink hearts secures her short, disheveled gray hair.
“You know, I’ve been prepared for this for 20 years. It’s a fantastic divine manipulation; when you think you retire, it’s when your work begins,” adds Ross. The delivery is thick with her Swiss homeland, and raspy from chain smoking Marlboro Lights, a habit she defends as one that keeps her “grounded.”
Over the previous two weeks, she had led a “Death, Dying and Transition” workshop in Alaska and one for 50 AIDS patients in California. Her travel schedule in the United States and overseas accounts for one-half million miles a year, keeping her off the farm 90 percent of the time.
“Now it’s six weeks on the farm--it’s like a dream come true,” says Ross, curled up in an oversized corduroy chair, knitting a pale blue scarf flecked with lilac. Her fingers, thick and calloused, move swiftly. She spent the earlier part of the morning coaxing one of her sheep through the delivery of twin lambs.
An eclectic blend of African and native American artifacts fill the living room with rich history and bold color. Primitive figurines stand guard on the mantle and Kachina dolls fill antique wooden hutches. Navajo rugs cover the floors and walls. A huge painting of a barechested Indian on horseback hangs above the stone fireplace.
Divorced From Husband
A portrait of the Ross family, arm in arm and aglow with smiles, hangs on an adjacent wall. She is divorced from her husband of 22 years, Brooklyn-bred Dr. Manny Ross whom she met while a medical student at the University of Zurich, but the couple and their two grown children retain strong ties.
“I had probably the most generous husband you could possibly have,” says Ross. “And my crazy life evolved so gradually that it (the split) didn’t come on like a big lightning. Everything was slow motion evolution. So it has worked out perfectly. Now he has what he needs"--a second marriage and a toddler daughter--"and I have what I need. We are the best of friends.”
Ross was a professional heavyweight long before the onset of women’s liberation, yet she balks at the label. “I was not a feminist at all. I needed a family. Absolutely. I could not have done this work without having an anchor. Now I can live as a single woman.
“This farm is my retreat. Where I recharge my battery. Where I can cook and bake and work very hard in the garden. I always said I wanted to be a doctor or a farmer. Now I have both.”
She also has the scorn of some of the townspeople. Here in ultra-conservative Highland County, there are residents who are apalled that their new neighbor, the famous thanatologist, wants to start a hospice for AIDS babies on her land. Some folks, she is told, actually hold their breath when driving past “Healing Waters” so they won’t become infected.
She has received several threats.
“That is when I applied for rezoning to adopt 20 AIDS babies to have a hospice here. My immediate neighbors are very nice, but there are people scattered around who threaten me with burning the farm down,” she says evenly, her eyes fixed on the pink steel knitting needles.
“And I’m definitely going to have a hunting accident. Oh, these forests are full of hunters, and it will be just an accident that they shot me instead of a deer. By wonderful coincidence, I happen to be overseas during hunting season. There are people who would love to see me dead. I’m a real thorn in their sides.”
Ross is the lone occupant of a large farmhouse on her sprawling piece of property. She laughs huskily when asked if she fears for her life. “No, I feel totally protected,” she says softly, her brown eyes burning through large beige glasses fastened to a delicate chain of turquoise beads. “And if I have to make the transition,” Ross’s image of death, “I’m certainly not afraid of it.”
While the community backlash riles Ross, she is accustomed to being a thorn in the side. When she started her work with dying patients at the University of Chicago in the late ‘60s, she was ostracized by the administration and her peers. “It was very lonely,” she remembers.
“They were afraid that I would make the hospital famous for dying patients, rather than excellent cancer care. That was their big, big grievance. And it did happen that people started to think of the University of Chicago as the birth place of the death and dying movement.”
Later, Ross’s work evolved into an unquestioning belief in an afterlife. This was bolstered by her documentation of 20,000 near-death cases, “out-of-body” experiences reported by people who were aware of shedding their physical bodies “like a butterfly”.
All this other-worldy stuff coming from the Ross office convinced many leading scientific and medical honchos that this time she had really lost it. One major talk show that regularly features celebrity doctors dropped her like a hot potato. Skepticism still abounds.
“Those who are not ready to hear about it will be pleasantly surprised when they make the transition,” Ross says, drawing deeply on a cigarette.
“How do I verify that those who die are really alive? That’s easy to do when you look at dying children. For example, on a July Fourth weekend, three members of a family are in an accident and the children are sent to burn units and intensive care units. I sit with the youngest child who is in the ICU, and shortly before she dies, there is a change that takes place that I can pick up very fast. It’s like she has no more anxiety, a peace comes over her. Then I touch her and say ‘are you going to share with me what you experience?’
“And she looks at me like she’s looking through me and says ‘everything is OK now. Peter is already waiting for me.’ But Peter was sent to another hospital’s burn unit. And I’m not there to analyze and criticize--I’m just there to register. And when I leave the ICU, I have a message that the burn unit called and Peter died 10 minutes ago. I have never had a dying child who didn’t mention somebody who preceded them in death.
‘No End to Your Work’
“It just helps to know there is no end to your work,” she says with a serene smile, her legs tucked close to her lithe body.
Whether you believe in the spiritual link that guides Kubler-Ross, there is no dispute that she has never wavered from her mission--to bring dignity to the death process. Her 20-year-old “Death, Dying and Transition” workshops have helped tens of thousands of terminally ill patients and grieving family members drink deeply of life until the end.
“On Death And Dying” is a virtual handbook for health care professionals and seminary students, as the first realistic guide for dealing with death. Ross’s landmark work focused on the dying person as a human being, who, when included in the medical dialogue, can actually be a valuable teacher about the final stages of life. In simple and direct language, she details the patients’ fears, hopes and experiences. It was this early research as an assistant professor of psychiatry in Billings Hospital at the University of Chicago that pioneered the American hospice movement, another grueling battle for Ross.
“They used to have these town meetings, crying out that they didn’t want death houses in their neighborhoods. It took us three years of obstacles and hostility to start the first hospice, and now,” she smiles broadly flashing big, white teeth, “hospices are popping up like Kentucky Fried Chickens around the country.”
And as she approaches her own senior years, Ross is a leading activist for AIDS patients’ rights, crusading for societal love and acceptance.
“My role is to make people aware that AIDS is not the curse,” Ross says. “That this is the last chance for us to learn what unconditional love is all about. That if you can love a repulsive-looking person covered with sarcoma (skin ulcers), then you know unconditional love. With AIDS, you cannot pass the buck. You cannot just say ‘it’s none of my business, it’s a gay disease.’ It’s not a gay disease. It affects men, women and children, every age, creed and color.
“I had a mother write me the most pathetic letter I think I have ever received in my life, a few lines--'Dr. Ross. I have a 5-year-old boy who is dying of AIDS. I am too weak to take care of him. How much would you charge?’
“In the state of Virginia, I have this dream farm for a 5-year-old child. Homegrown vegetables, fresh air like Noah’s ark, two burros, two turtles, about 40 baby lambs. But I could not go and pick up this mother and this child and just love them and feed them until they died. And that is the hardest part of my life. That I’m in a free country, and I cannot take a dying mother with a dying child into my own house.”
Her voice rises in an angry crescendo, but Ross is undaunted in her dream. She has cultivated a national network of adoptive parents who have set up mini-hospices for AIDS babies in their homes. And she plays Santa Claus to AIDS babies year-round, bearing boxes of exquisite dolls and clothes handcrafted by her European friends.
Leaping from her chair, Ross pads across the dusty wood floor to retrieve an orange velour caterpillar. “This is what I show to dying children. I tell them ‘your body is just a caterpillar. When you die, the caterpillar will release the butterfly,” Ross pulls a monarch butterfly from a slit in the caterpillar’s belly.
“And I tell them ‘the butterfly is the immortal part of the human being and that flies up. The only thing that is mortal, the body, goes back to the soil.’ ”
She shakes her head and leads the way into the large, sun-splashed kitchen crammed with primitive baskets and large tins brimming with grains. On a picnic table, she lays out a hearty farm lunch of hunks of cheese, homegrown beets, fresh baked bread and carrot cake. The flag of Switzerland, a red and white cross, waves from a pole on the hilltop out the window.
Ross takes a bite of beet, the purple liquid staining her lips, and speaks of death as an entry into a higher state of consciousness. “When I had my own cardiac arrest three and half years ago, I experienced it myself. It’s fantastic. It’s so beautiful.
“I know now that if all my colleagues say ‘oh it’s just the brain releasing some morphine-like substance that gives you this feeling of exhilaration,’ they are stuck in the physical world.” She laughs hoarsely and adds: “They are in for a very big surprise.”
When her father died in Switzerland, a very strict and rigid disciplinarian who frequently dissented with his independent daughter, Ross says she witnessed him communicating with his own long dead father who was “waiting for him.”
As one of triplet daughters born to Emma and Ernst Kubler, establishing the independence that has marked her career was no easy chore. Raised in the rural village of Meilen, the Kubler girls, Erika and Elisabeth (identical twins), and Eva were dressed alike well into their school years and always treated as a unit.
Identical Sleep Pots
“We even had identical sleep pots and were expected to pee at the same time,” says Ross, with a wry laugh. Eva now runs the European arm of the Elisabeth Kubler-Ross Center.
“Animals were always a big part of my life,” continues Ross, slathering sweet butter on the heel of the bread loaf. “You understand, for a child who had no identity to find a bunch of bunnies who know you’re you and not any of your sisters is an incredible gift. Grownups didn’t know the difference between my sister and I, but my rabbits knew because I fed them and I loved them and I touched them.”
It’s still nature that keeps Ross on an even keel, the cushion she wedges between herself and the 250,000 letters she receives a year, the hurting seminar participants at workshops that “suck you dry,” the airport shuffle, the 17-hour work days.
“To retreat into animals and gardens is the biggest gift from heaven. I have geraniums that I grow all winter in a greenhouse so I have flowers in the house when it snows outside.”
After lunch, Ross settles back into her chair and quickly grabs for the knitting needles. This is not a woman who can sit idly.
The subject at the forefront of her heart takes over.
“AIDS is here to raise the consciousness of mankind and to give us a last chance to make a choice for love. Do you see, to be born into this world and to live 25 years and then die is a horrible destiny from humanity’s point of view. Here, you have not even started to live, then you have to die a terrible death with lots of diarrhea and vomiting and pneumonia and being ostracized and told you are of Satan.
“But I think just the opposite is true. What better way to give people a last chance, not an easy one--to see what love is really about. That they really have to take a stand, to say ‘OK, I’m going to throw overboard all my prejudices, all my negativity, all my icky feelings about these people. And I’m going to help them.”’