Health system couldn’t protect daughter from herself

Milwaukee Journal Sentinel – July 25, 1999

Elise John was intelligent, loving, sweet, gentle, a writer, a poet, children loved her, and she often tried suicide.

Constantly worried, her mother, Erica, tried to get mental health workers to talk about her seriously mentally ill daughter. Again and again, workers told the mother that they couldn’t talk about Elise. Patient privacy, you know.

Finally, workers broke their silence and spoke to members of Elise’s family. They told them that she was dead.

“The mental health system in this country is in a shambles,” Erica John said.

She is widely known in the community and in the worldwide Catholic Church; her family ran the world’s largest Catholic charitable organization; she has spoken to popes and received telephone calls from Mother Teresa when the nun was one of the most admired people in the world.

And last year, Erica John chased her 28-year-old schizophrenic daughter on a downtown street. Erica John also had a mentally ill son, who often banged his head against a wall and lived in filth.

Her son got the help he needed and survived. Her daughter didn’t.

To help other families and to point out failures of the mental health system, Erica John and a daughter, Paula, talked about the devastation that mental illness has caused one of this city’s most widely known families.

Funeral service, March 1999, eulogy given by Marie John: “Elise loved to learn, try new things and teach others about them. Her fascination with the Korean community was intense. She took Korean language classes, received a black belt in taekwondo. And worked in a battered Asian women’s shelter in Boston.

“Although she was my older sister, she was shorter than any of her siblings, and her fingers were that of an elegant aristocrat, thin and delicate. Her brain was most different, though. It was plagued by a terrible disease.

“She struggled with schizophrenia for years and suffered with voices in her mind. . . . She confused us, she made us scared for her and some viewed her as an odd character. She wasn’t, though. It was the disease.”

The first time Elise tried suicide was in 1993, when she woke her mother at night.

“I’ve taken sleeping pills,” Elise said.

Her mother hurriedly took her to a hospital, the first of many times Elise would be hospitalized but not helped. A stomach pump doesn’t do much for the brain.

“The family is treated as the enemy,” Paula John said. Mental health workers won’t violate the privacy of the patient, so “we had no way of finding out what she needed. Or even her diagnosis.

“Elise was released after 72 hours with no follow-up treatment.”

Elise’s suicide attempt terrified the Johns, just as they’d been terrified when an older brother of Elise “went from hospital to hospital,” Paula said.

But her brother had become ill as a boy, when family members could involve themselves in his treatment. However, his treatment highlighted another problem: Harry John, Erica’s husband and the boy’s father, was an eccentric heir of the Miller Brewing Co. fortune; anonymously, he made huge contributions to worthy causes, but his idiosyncrasies and bizarre behavior ruined his marriage, baffled the city and the Catholic Church and ran his charitable De Rance Foundation into the ground.

When the Johns’ son became ill, “we couldn’t get him help right away because Harry didn’t believe in psychiatry,” Erica John said. “Harry said, `(The boy) doesn’t need a psychiatrist, he needs a priest.’ ”

Harry John wanted exorcism, but Erica John and the Catholic Church wouldn’t permit it.

Eulogy by Marie John: “I have two other sisters, Paula and Emily, who have taught me so much about being an intelligent and sophisticated girl, but it was Elise who taught me to have fun. She taught me how to eat an ice cream cone when it was dripping all over me. We shared a bedroom for many years, and she would read to me every night. . . . She would take my hands in hers and tell me stories.”

In 1994, Elise graduated from Marquette University with a degree in psychology and moved to Boston. She wanted a career helping people, and she worked with abused women in the Asian community.

She began acting strangely again, scared her mother with her ramblings and delusions, and her mother tried to get her help. Then an acquaintance of Elise telephoned Erica John. Elise was hospitalized after being found nearly catatonic.

Erica and Paula John went to Boston. They held Elise. Kissed her. Soothed her.

“We still didn’t know her diagnosis,” Paula John said.

Privacy, they were told: Elise might kill herself, but we can’t tell you how to stop her from doing it.

After a lot of talk and tears, Elise agreed to come home. When Paula John went to Boston to help with the move back here, she discovered that Elise — a member of a family that had controlled millions of dollars — had been living in a homeless shelter.

In Milwaukee, family members tried to get her the help they had gotten her brother. They got her involved with the Grand Avenue Club, a marvelous downtown organization for people with mental illnesses. Club officials had helped the brother find work, and they helped ease Elise back, too, with transitional employment. She ran errands for Foley & Lardner, a large legal firm.

“She looked so pretty, and she seemed to be doing so well,” Paula John said.

Then Elise started showing stress, destroyed a stove she was cooking on and disappeared from her mother’s home in 1997.

“I got a call: `Paula, can you come get me? I just took a bunch of iron pills, and I need to go to the hospital,’ ” Paula John said.

She found Elise alone, standing on a sidewalk and writing on a brown paper bag. Elise wanted her family to know how she should be treated at the hospital:

“1. I like live animals, dogs.

“2. Check to see if they’ve mistreated me, raped me, etc.

“3. Bring me nice children’s music, things to do with my hands — balls and squishy stuff.

“4. Speak to me calmly, like a sick child.

“5. I have no anger in me.

“6. Visit me as often as possible — the words I will not understand, but the calm voice I will.

“7. Have (an older brother) tell me jokes. His laughter will bring me joy.

“8. Check to see that I have not been mistreated like an animal. I will not understand the words, but the emotions I feel are real.

“9. If I look `insane’ and out of control, it is only because I lack attention. Talk to me calmly and I will calm down.

“10. Peace.”

Quickly, Paula John took her sister to the hospital, and Elise’s stomach was pumped. Elise changed her mind and wanted to go home, but after more agonizing pleas by her mother and family, she agreed to stay in a psychiatric hospital.

She was checked in at 5 a.m., and at 10 a.m. she called Paula and said that a hospital social worker had given her a bus ticket and she was leaving the hospital.

The John family worked quickly to get her detained, and she was, for three weeks.

Erica John recalled that her daughter told her that “life is stronger than the will to die.” After pausing for a moment, the mother said that eventually, no matter what they did, death became stronger than life for Elise.

With bitterness, Paula John, who is an attorney, said that too often officials of mental health facilities “threw her out on the street with pills and a bus pass.”

Elise stopped taking medication.

“They call it `cheeking it’ — she’d put the medication in her cheek and spit it out later,” Paula John said.

Police found Elise wandering in Oak Creek.

“She was dirty, hungry and without a dime on her,” Paula John said.

Paula John — more as a family member than a lawyer, more from love than recitation of the law — fought hard to get help for Elise and her brother, whom she asked us not to name. Until the proper medication was found for her brother, “he was living in total chaos,” she said. “Life was seeping out of him. He was a step away from homelessness. He wasn’t able to carry on a conversation, always hearing voices and confused.”

“He’d bang his head against a wall and scream,” Erica John said.

“Years of chaos,” Paula John said. “Dad would send him to a good place, and then Dad would yank him out.”

Harry and Erica John, who had nine children, were divorced in the 1980s. His reputation in tatters, his importance dimmed, Mr. John died in 1992.

After her brother began taking the correct medicine years ago, he started getting well, Paula John said. Once a week, he helps out at a warehouse, where he makes labels and organizes boxes. He is a great success, compared with how he had lived.

With Elise, who bought a rope.

Homily by the Rev. Bill Johnson, S.J.: “Elise finally knows the love her disease prevented her from experiencing sufficiently in our midst. . . . There are no more roadblocks, no more filters or screens to inhibit her experience of love.

“She thanks you now, Erica and Paula, and all of her brothers and sisters and friends for all the ways you tried to break through the mystery of her illness. You did everything that was possible for Elise.”

Last year, Elise said things to Marie John and others that sounded like goodbyes; the farewells sounded permanent.

“I began following her everywhere she went,” Erica John said. “I was very frightened.”

She followed her daughter to a bank, then confronted her in the Greyhound bus station. Daughter ran and mother chased her. Using a cell phone, Erica John called a psychiatric crisis team, which headed for a restaurant that Erica had seen her daughter enter.

“I checked for other exits,” the mother said, and waited on the downtown street for help to arrive.

Elise was taken to a hospital, commitment proceedings were started — and thrown out on a technicality.

“I said, `This child is not going to survive this,’ ” Erica John said.

Elise went to a hotel and attempted suicide. Hotel guests found her staggering and clutching the walls.

Then it was back to a hospital, where her stomach was pumped. Again. The machine could have been labeled “Elise’s machine.”

She was committed to a psychiatric hospital for six months. However, she was released only a few weeks later, but no one told her family, Paula John said. Erica John found out and waited outside the hospital.

“I saw Elise coming out with this little duffel,” she said. ” `Elise,’ I said, `please come home.’ She was so angry, she bolted.”

Elise stayed with a friend, who also had mental problems, Erica and Paula John said. Elise left the city last September, but the friend wouldn’t say where Elise went, the Johns said. They worried for months — then an acquaintance of Elise in Portland, Ore., telephoned Erica John and said Elise had been hospitalized.

“Elise was afraid someone was going to rape and kill her, and she had been sleeping under a bridge,” Paula John said.

“I’m so afraid,” Elise said by telephone. “Someone’s after me, and I’m afraid I’m going to be killed.”

Mental health workers wouldn’t, of course, give the Johns any information. Privacy, they said, using a word that protects some and kills others.

And, in their wisdom, workers released Elise.

“I’m sure they were relieved they had one less person to have to worry about,” Paula John said. “They don’t have the personnel, the funding.”

Elise overdosed.

“They found her on a sidewalk outside her apartment,” Paula John said.

In Portland, a sensitive government lawyer who spoke often with the family persuaded Elise to commit herself. Thank God, the Johns said. She’s safe.

Once again, Elise was in one of those safe places our mental health system provides.

Again, the hospital gave the Johns no information. And, again, family members — the people most likely to help her — were made to feel like the enemy.

Elise tried suicide several times in the hospital, which apparently didn’t overly concern workers. Because they gave her a pass.

“She went directly to a store, bought a rope, went to a movie until it got dark, then went to a bridge,” Paula said.

Isabel John, a niece whom Elise had treated as a sister, wrote a poem for the funeral that included these words: “Sister, I shall not shed any more sad tears / for I know you are free. . . .

“Sister, your nightmare is done.”

Erica and Paula John and their family know that the nightmares aren’t over for thousands of people who aren’t helped much by our mental health system.

“They end up in jail,” Erica John said, “or homeless.”

Or they find a bridge.

“The tragedy,” Thomas Cannon said, “is that Elise’s death was entirely preventable. The fact it wasn’t prevented is an indictment of the system that separates the patient from the people who care most about her. Namely, the family.”

Paula John had been with a brother, Gregory, when she received the telephone call from Portland about Elise. Ironically, Gregory is executive director of the Alliance for the Mentally Ill of Greater Milwaukee.

“Imagine our shock,” Paula John said. “Elise had hung herself from a bridge. Impossible. She’s supposed to be in a hospital.”

Only two weeks earlier, Elise had been committed to that safe place.