Temporary life
If Maria KingIf she could choose, she would like to die from a heart attack. But she can not. "I'll probably suffocate," she says. An expression of regret flits across her slender face, for a moment, then she smiles. Maria König is 42 years old, she has cystic fibrosis, CF, cystic fibrosis, a fatal lung disease, genetically determined. She is one of around 8,000 patients in Germany. Excessive mucus production is the result, the pancreas is affected, therefore, it also suffers from diabetes. One could designate Maria König as Methuselah under cystic fibrosis patients; many of them are not celebrating their 30th birthday.
Maria König has long blond hair, a fine face, big blue eyes, but the disease has banished beauty: the rings under her eyes are deep, two pronounced wrinkles run from the nose to the corners of the mouth; and she has the stature of cystic fibrosis sufferers: emaciated, emaciated, like an anorexia. Some have a new lung transplanted, a new life, they say. Maria Koenig does not want a transplant, although she might gain a few years with it.
By nature spare parts are not provided.
"But what kind of life would that be," she says, "I would need to take strong medications every day, immunosuppressive drugs, take better care of myself and have no guarantee that my death would be adjourned." She is often attacked for her opinion, especially by the parents of young patients who cling to every hope. "I'm not faking a transplantation," she explains, but for herself she has ruled out this possibility. "Spare parts are not provided by nature." God gave her this body, these lungs? and this disease. And this is her job, her package that she carries with her. That's not how she always thought. In 1996 she suffered a life-threatening infection and was about to be put on the waiting list for a new lung. But when the worst was over, she decided against it.
Maria König inhales three, four times a day. In the morning, the mucus is tough and persistent, it takes an hour to bring it to a bearable level. "I will never be empty," she says. In both nostrils protrude the ends of an oxygen cable. It is wrapped around the ears, so it does not slip; goes down to the floor, through the apartment, to the bathroom. There is Mary King's respiratory aid, her life coach: a device that enriches the oxygen from the air and growls like a lawnmower.
Deadly and yet satisfied
Since 2000, the year of her divorce, she can no longer cope without additional oxygen. Her body can not absorb more than the current dose, the lungs are working worse and worse. She often has headaches from hypoxia, she reports. Maria König speaks in a husky, deep voice, like a chain smoker. She often clears her throat, blowing her nose every three or four minutes. She plans only until the next week; She often has to cancel appointments shortly before, because she just does not feel well. And yet, "I'm satisfied," she says, "I've been lucky in life." The disease was never the most important thing.
At age 13, Maria König learned her diagnosis. The parents then made a conscious effort not to treat them differently than their three sisters; the girl should lead a reasonably normal life. Today she lives in constant fear of infection, the mucus is a hoard of germs, bronchitis could bring death. She was just in the clinic, got antibiotics, intravenously, many remedies no longer help, the bacteria are resistant.
* Name changed
In 1996, she had to give up her profession as an auditor and has since been early retiree. Only rarely does she leave the ground floor apartment in Bonn. She is too tired, too tired; and when she goes outside, she carries a small oxygen bottle with her. For a long time she was no longer in shops. She has lost the connection to fashion, trends, even to some acquaintances. Sometimes Maria König goes to the parents, with an old Audi 80, the ride takes twenty minutes. But usually mother, father or one of the sisters come to her, help in household and garden. "Without my family, I would not be so well," she says. And the neighbors are also careful if the shutters open every morning. Whether Maria König is still alive.
I am not afraid of death itself, but of dying.
She often talks to the friends who stayed, the parents, the sisters. And she reads a lot, the books of Elizabeth George, Siegfried Lenz, Heinrich Böll? and the Harry Potter novels. "I really want to read the seventh volume," she says in a firm voice.
If one day she becomes too weak to walk, she will probably move out of her own apartment, back to her parents. Mother and father do not want to talk about it, both are over 70 years old and do not bear the thought that their child will probably have to go before them. The father only said: "We'll see, we'll find a solution." She does not plan her funeral, "I do not care how I'm buried, dead is dead." And: "I would not need a gravestone, but maybe my parents." Only one thing she has in mind, actually, she says, she should have long since begun: farewell letters write to her sweetheart. "But I'm putting that in front of me, I do not know if I'll think the same way in two years as I do today."
She is not afraid of death herself, but dying. When the day comes, she does not want to be intubated to prolong her life. But because it's a long, painful last fight, suffocation, she wishes you could give her sedatives.
Dying - that is the confrontation with the passing life
"In recent years, the possibilities of medicine have improved rapidly," says Berlin's death researcher Bernhard Jakoby. "We live longer." The fact that the doctors intervened in the dying process, but also prolonged the dying. "People's fears of death are due to the fact that they feel victimized and incapacitated, and most people do not want maximum treatment, because often without vegetating, this means being supplied with food via a probe." Nevertheless, he rejects active euthanasia, because it would take a patient to the natural end, the confrontation with the passing life: "Things that are not done in this world, must be done elsewhere."
Bärbl-Lis Leybold has already regulated a lot. She stands in the cemetery in Feldafing on Lake Starnberg, with one hand resting on her "Gehwagerl", and with the other she delicately strokes the stone slab that covers the urn burial ground of her parents and brother. Three names are engraved in it, Ludwig, Elisabeth and Tönnes Leybold. Below is room for another? Your Name.
Bärbl-Lis Leybold is 91 years old, two years ago she bought the grave site, put the three urns around and put them inside. And because she can walk badly, now is the first time she sees where she too will be buried. She cries for a while, then straightens her back, turns around and looks across the lake to the mountains. The sun is shining. "There's a nice view from here," she mumbles.
For 17 years she lives in a retirement home in Starnberg? good and glad, as she says. Bärbl-Lis Leybold moved there after his brother died at the age of 60. To be able to organize her own demise was a long way for the elderly woman: "I did not want to have anything to do with it, but the thought alone changed my mind." She never talked about dying at home, she recalls. Only persistent conversations of the employees in the retirement home led them to deal with their own death.
Bärbl-Lis Leybold's face is slightly tanned, the white hairs shine. With watchful eyes, she observes her surroundings, she is interested in art, theater and especially fashion. In former times she was a garment master and costume designer, worked at theaters in Klagenfurt and Linz, Salzburg and Munich. Later, as a pensioner, she then traveled a lot, to Australia and England, Croatia and Hungary. And five years ago she even cycled to Lake Starnberg. But this is no longer possible, the legs are too tired, often it attacks a dizzy feeling. So their current radius is limited to the environment of the retirement home.
Trillions had to die before me, and I'll succeed.
"I am not old, but ancient," she says, grinning, and when she speaks, her long earrings wiggle as if they are nodding in confirmation. She is not afraid of death: "Trillions of people had to die before me, I will succeed." But she hopes it will be quick she has determined that no device should keep her alive. "A living will is important, everyone should regulate in advance what should happen if he is no longer master of his senses." Six years ago, she signed her order.
The last relatives Bärbl-Lis Leybolds, a godchild and a cousin, live in Berlin and Australia. She has no own children, never married. After her fiancé had not returned from World War II, she could not warm for anyone else. To this day, he is considered missing, until today she wears his ring, golden with a green coat of arms. This memory of him, she says, will take her to the grave.
Bärbl-Lis Leybold has diabetes and cardiac arrhythmia, recently a mild stroke was added. Her optimism, she says, has always helped her not to despair of such tragedies: "Life is given to us, we must go through.And then we have to go again, otherwise the world would burst. "But that does not mean that she is waiting for death She knits a lot, threads colorful chains of glass beads, watches TV, likes the soap opera" Forbidden Love " "It's great to see what these young people always think of a nonsense." As long as she can keep herself busy, she also wants to live.
That everything is regulated, she feels "extremely reassuring." She herself paid 5,000 marks in advance for a cremation seven years ago; again 190 euros for engraving their name on the grave plate. "It would be wonderful if there was a life afterwards," says Bärbl-Lis Leybold, but she does not quite believe it: "This Christ has only recently occurred? For me personally, the theory of evolution is more likely."
Dying - the transition from one state to another
"Certain elements and phenomena of dying occur again and again, worldwide and independently of culture or religious character," says Bernhard Jakoby. "A look back at life and the transition into the other world through a long, dark tunnel, at the end of which is a bright light and wait paradisiacal landscapes." The famous death researcher Elisabeth Kübler-Ross has developed a model of five phases that almost every dying person experiences alternately: the unwillingness to will, revolt with rage and anger, depression over the unfinished, negotiating with the fate for postponement, finally acceptance of the death.
It seems that Stefanie Wieczorek, 29, lives through these phases as representative of her daughter Alina, Ten years ago, when the child was just four months old, doctors told her it had a metabolic disorder: Zellweger Syndrome, a genetic mutation. The most severe physical and mental disabilities are the result, life expectancy is a maximum of two years. At that moment, Stefanie Wieczorek lost faith in God. She was told that she could have played the lottery, that the probability of being six right was the same as the probability of fathering a child with a man who had just that genetic defect. Alina, soon to be eleven, is still alive? how long, no one dares to predict today. She does not speak, is almost blind, is in development at the booth of a six-month-old infant.
The child needs his medication on time to the minute; Last year, it suffered a so-called Edison crisis? A lack of cortisone in the body led to adrenal insufficiency, causing heart failure. That Alina survived is a little miracle for Stefanie Wieczorek. The training as a dental assistant broke it off; but she speaks in medical terms as if she herself were the doctor. When she became pregnant again with another man, she was advised that her anxiety that this child could be seriously ill was enormous, and she was advised to give her a genetic test. "But until all the cells have been cultivated, I would have been in the sixth month," she outraged, "there's no stopping them!" When I heard that, I just waited. "
Of course I sometimes quarrel with my fate.
The child, a boy, is healthy, her second son is as well. They are eight and five years old. The older man now lives with his father, the younger one with Stefanie Wieczorek, her new husband and Alina in Essen? otherwise she would not be able to cope with family life. Stefanie Wieczorek's day is determined by the care of her daughter: washing, wrapping, tea or liquid food to the feeding tube. She talks to Alina, tickles her, cuddles with her, embeds her in a rocking chair, plays music for her, and is certain: "Alina will get it." If the child sits and laughs, then she knows what she is rubbing herself for. "I'm not the perfect super-care mum," she says, "of course, I sometimes quarrel with my fate." Stefanie Wieczorek is thin, far too thin, she wears long blond hair, her nose protrudes pointedly out of her face. Although she smokes a lot, she looks younger than she is. Her voice is deep, sadness lies over her like a veil.
Three or four times a year, Alina and her family spend their holidays together. The girl then spends a few days in the children's hospice "Noah's Ark" in Gelsenkirchen. During this time, Stefanie Wieczorek, dedicated to the sons and the husband, who often have to back down. The holidays are also a training for the young mother to get used to an upcoming life? a life without the sick daughter: "Alina dismantles, she slowly turns yellow." The liver. "My nightmare is that she's dead one morning." A crisis can come at any time, she says. And then, "If only I could lose her dying."
Not always did she feel that deep love for her child; Shortly after she was diagnosed, Stefanie Wieczorek rejected Alina, doing only what was necessary, feeding, wrapping, bathing."I was afraid to love her more and more, afraid of the suffering that comes to me when she leaves me." Only her mother could bring her to her senses by saying that the baby could not help it, be defenseless, ill. "I woke up," she admits.
When dying, today is important, not tomorrow
Recently, Stefanie Wieczorek had the living will prepared by a lawyer. She herself does not want to have to decide whether to stop her child from getting the life-support equipment one day. She wishes her "Puppa" dies at home, not in the hospital or in the hospice. Then her child is to be buried in the Frillendorf Cemetery in Essen. A white child coffin, white balloons, white lilies. Even though she herself has finished with God, she wants to have Alina buried by the pastor who confirmed her 16 years ago. The devotion will be without preaching, with a minute of remembrance, the "Ave Maria" shall sound.
"My personal hour zero," says Stefanie Wieczorek, she bends her back, strikes one leg over the other and wraps around it? as if she could hide from the thought if she only makes herself small enough. She does not want to think about the future. "Today is important, not tomorrow, we celebrate every birthday, every Christmas, every Easter, as if there is no next time."
What will be after that, she still does not know exactly. Stefanie Wieczorek wants to take her eldest and she wants to work again. Maybe as a geriatric nurse? if she can do one thing, she says, then take care of it.
