Fifty years from now, we will look back in shame! How could we let the mentally ill be treated like this?

                History will judge our actions harshly.  We closed the hospitals and placed the impossibly high burden of “danger to self or others” as our treatment criteria.  Meanwhile millions who are seriously ill either live on the streets or are incarcerated.  It is estimated that there are as many mentally ill in jails and prisons now as there were in hospitals at the beginning of deinstitutionalization; almost 500,000.  We have protected their rights:  the right to be ill without treatment, the right to live in poverty or in a cage.  We have returned to a time before the asylum movement where the serious mentally ill were left to fend for themselves until their behavior interfered with our lives.  Shame on us and the choices we have made.

The Story

                He was standing next to our billing administrator screaming, “My brame, my brame. Turn that off, it is hurting my brame.”  His left hand was banging on the computer screen on her desk; his right hand was pressed against his head above his ear.  “Stephan!” I called.  “Stephan, what’s the matter?”  He turned toward me, his narrow face contorted with pain, his eyes moist.  His eastern European accent was thick.  “The computer!  It is hurting my brame!  Ronald Reagan first put the radioactive isotopes in my skull and now he is trying to control me with this computer.”

                “Karen, could you shut the computer down and I’ll get Stephan downstairs?”  The frightened woman had already shut it off and was grabbing her purse from under her desk moving toward another office.  I led Stephan to the elevator and we went down a few floors to my office. Colleagues stationed themselves near my door as I directed the yelling man to a chair. A nurse mimed a call to the police as we passed her. I shook my head no, but left the door open.

                Stephan was the strongest person I’ve ever met. He wasn’t tall, less than six feet. But he was so broad he had to turn sideways to walk through most doors. When he’d emigrated from the Ukraine twenty years earlier he’d gotten a job on the loading dock at a local factory. When the fork lift broke, he loaded barrels by hand.  I once watched him pick up the back of a small American car.  He was psychotic most of the time. The only time I saw him stable was after an extended hospitalization. Even then, he was symptomatic but not agitated.  He drank and smoked pot and most likely used other substances.  He also screamed and yelled and frightened almost everyone he met, including me.  He’d recently grabbed his file from a nurse who was treating him and ran out the door into the street.  I’d needed the police to get the file back.

                However, there was a sweetness about him that would emerge when he realized how fearful he made people.  “Ok, ok! Don’t worry,” he said smiling. “Maybe the computer is only to get money for mental health.  That lady was a nice lady. She wouldn’t hurt me.  But Ronald Reagan did put isotopes in my brame!”   In the clinic, we held his prescription for an anti-psychotic medication that had a sedating effect. I offered it to him. He swallowed two and said, “I need some beer.”   Then he got up and left.

                Waiting for him in our reception area was Jane, his girlfriend.  She was a tall, thin woman with stringy black hair.  She’d met Stephan in the state hospital when they were there on a long term admission.  She’d found him exotic and interesting and had attached herself to him.  Ten years later she still followed him around, helping and supporting him and cleaning up his messes.  One of her main roles in the relationship was to find apartments.  Landlords would never rent to Stephan, but when Jane went to rent a place, she was neat, clean, pleasant and cooperative.  She’d never had a problem finding a place.

Jane’s first hospitalization was at age 17.  Voices told her that her father was evil so she’d attacked him.  She’d been taken directly to the state hospital where she spent several years.  As a consequence she’d taken medication most of her adult life. Every few years she would stop taking medication and become catatonic, entering a world that only she knew. Unfortunately, she would stop eating and taking care of herself and eventually agree that she needed to be hospitalized. Even when she was stable, she still was psychotic in a quiet, internal way that, for the most part, gave her pleasure. She called it “active dreaming”.  She created a world in her mind where many millions of people lived.  She controlled them consciously, but they lived in what she described as a “wide awake dream state.”

                Jane would work with her caseworker to secure an apartment, pretending that she would live there by herself.  The caseworker would join in the fiction, imploring Jane to keep Stephan out.  Jane would agree, but within hours of moving in, Stephan would be there.  He was a presence.  Even in his most stable moments he was three times louder than any other person.  He occupied space with constant movement, walking to and fro; arms flailing with a lit cigarette dropping ash.  Soon after moving in, the apartment was a mess, with empty beer cans and liquor bottles strewn about.  Fast food containers would fill the trash cans and burn marks would appear on the furniture and rugs.

                The first complaints would come from neighbors, those unfortunate enough to share walls, ceilings or floors with Jane and Stephan.  Often, the inexpensive housing was occupied by graduate students who would tap on the door requesting that Stephan please quiet down.  Drunk or sober Stephan would explain that he had been made into a nuclear weapon by Ronald Reagan. Once I was called by a student’s roommate and went to the apartment to find Stephan sitting on a coffee table yelling at his frightened neighbor trapped on the couch in front of him.  Stephan was wildly gesticulating, bits of ash and trails of smoke everywhere.  “Look in my eyes!” he yelled at the young man. “See the bits of gold?  They always use gold when they place the isotopes.”  The student nodded in agreement.  “Terry, my friend! Tell him this is true!  I’m not lying about this,” he said, turning towards me and standing up.  I replied, “Stephan, you’ve certainly had some very difficult and frightening things happen to you.  But I need to talk to you.  Is it okay if this guy leaves?”  The student was out the door before Stephan turned around.

                “This is a nice place,” I said looking around. “You and Jane can make this work for you if you settle down. “  Jane came out of the kitchen where she had been reading a book. “Don’t worry, we won’t screw it up.  Stephan promised to stay away when he gets drunk. That should help.”   “A few drinks is not drunk,” he said.  He then proceeded to touch his nose, stand on one foot and walk a straight line, replicating a police field sobriety test.

                Jane’s caseworker came to my office the next day.  “Other tenants are already threatening to leave if Stephan keeps coming around. Just thought I’d let you know.”   When I stopped at the police station later that morning I was presented with three separate complaints about noise from Jane’s apartment. One included a question about domestic violence with the officer concerned about Jane’s safety.  It was something I often wondered about, but the only time I had seen Stephan get physical with Jane was out on the street in front of the mental health building.  He had grabbed her head and put her ear next to his ear.  He’d been screaming, “Hear them, they are cursing me.  They are laughing at me. They are trying to kill me.”  When Jane agreed that she’d heard the voices, he let her go.

                The eviction notice came the next week.  The caseworker tried to get them someplace else, wanting to stay on good terms with the landlord.  Weeks and then months passed as the eviction proceeded, and no living alternative presented itself.  Stephan’s drinking got worse and he spent most days on the street downtown, yelling at passers by.  When the police told him to stop or move on, he quieted down and left. I had numerous conversations with the psychiatrists and nurses and social workers I worked with to try to figure out a way to resolve the situation. I met with the Commissioner of Mental Health and the head of the hospital psychiatric unit.  Although Stephan put himself at risk by yelling at people and menacing them, he did not meet the criteria for “danger to self or others”.  Finally, the day arrived when they had to leave.

                Jane came to my office with her few possessions in a garbage bag. “I stopped taking my meds three weeks ago.” she said. “I want to go in the hospital.  I’m having difficulty knowing what’s real and what’s not.”  With Jane in the hospital, Stephan became a bigger problem.  He began living outside, staying in the parks and gorges that are plentiful in Ithaca.  His caseworker prevailed upon a shelter in a nearby city to help.  Stephan only had the clothes on his back when he left.

                The Ithaca police department Deputy Chief called me at my office several months later.  “Stephan was shot and killed last night.  The duty officer in ____, found out he was originally from here and called me. They wanted information to justify the shooting. Apparently, he’d had a small fire in his apartment, probably from unsafe smoking.  When the fire department came, he wouldn’t let them in.  When officers arrived to assist, he jumped out of a window and ran down the street.  When they finally cornered him he had a kitchen knife.  He wouldn’t put it down so they pepper-sprayed him, and then shot him with a bean bag round.  You know Stephan, that would only piss him off.  In the end, he came at them with the knife and they put four rounds in him.  Sorry to be the bearer of bad news.”

                I go to the library every week.  Each time I visit, Jane is in a comfortable chair reading a book.

               

The Stories

The stories are my remembrances. Each of them is based on a true event in my work for Tompkins County Mental Health. I have changed the names and identifying information of every client, patient and co-worker except for Beau Saul, of the Ithaca Police Department, who I was fortunate enough to have as a partner. When confidentiality demanded it, I have changed details. The dialogue is my reconstruction of what was said at the time.   I have felt honored to be let into the lives of so many individuals over the years. Their stories are a gift I have been given.  Please enjoy them in the spirit with which they were written; to educate and inform.