Dementia, when ignored, may have deadly consequences.

Mental illness and mental health are part of our overall health concerns throughout our lives.  As our society becomes more fragmented, we must remain aware of those who have few relatives or friends. It is estimated that in the United States there are over five million people with Alzheimer’s and many more who have other forms of dementia. How we help them says a lot about our society.

The Story

                Muriel Davis was 78 years old when her husband Ray died. They had been married 60 years. Ray had spent his entire work life at a company that made timing chains for car engines. His cancer had been a long drawn out affair that caused heartache and cost a good deal of their savings. Muriel acknowledged the pain of her husband’s death by being constantly reminded of their only son’s death in an automobile accident many years earlier. 

                Muriel didn’t experience loneliness in any specific way. She and Ray had lived a fairly quiet life.  She’d spent nearly twenty years serving food at the hospital cafeteria. Her work friends had never been to her home and when they gave her a retirement party at a local restaurant, it had been Ray’s first time meeting them. When Muriel and Ray were in their forties, after Ray Jr.’s death, they’d attended church and joined a bowling league. The demands of both proved too much. One winter they “forgot” to join the league and also avoided the phone calls of a pushy pastor. When retirement came at age 65 they focused on their home. Ray built a garage and made small repairs. Muriel worked in her garden and made preserves. Winter months were spent in front of the TV.

                The house was a small white farm house a few miles outside of the city of Ithaca. When it was built in the 1850’s, it sat in a grove of trees 100 feet from a dirt track where people walked, rode horses  or drove wagons, beginning their decent into the valley where Ithaca and Cayuga lake lay. When I first visited, it was seven years after Ray’s death. The house was thirty feet from a busy highway where cars and trucks roared by at sixty miles an hour. Sumac and other scrub trees hid most of the front of the house, while a partially dead maple tree threatened the detached garage. I climbed the uneven front steps to a six by eight foot enclosed porch. Battleship grey paint chipped and peeled under my feet. Ripped plastic, an earlier attempt at winterization, snapped in the fall breeze all around me.

                I rapped with my knuckles on the door. “Mrs. Davis, Mrs. Davis? It’s Terry Garahan. I’m from the county and I need to talk to you.”  My voice was raised to overcome the sound of traffic and what I assumed was a TV blaring in the living room. No response. “Mrs. Davis, Mrs. Davis. Can you come to the door please; I need to talk to you.” My voice was just short of a yell.  I could hear movement in the room behind the door. “I’m sleeping. What do you want?”  A scratchy older woman’s voice said.  “Mam, I need to speak to you, can you come to the door please?”  “Hold on, hold on, I’m going to be a minute. “ Moments later the door opened to reveal a short broad woman with thinning white hair. She had on a faded, flowered housedress, orthopedic stockings and bedroom slippers. I tried to peer around her, but her body blocked most of my view.

                “What do you want?” she said cautiously. “I’m from the county and I need to talk to you, do you mind if I come in, it’s awfully noisy out here,” I said referring to the trucks passing by. “I don’t know. This isn’t really a good time,” she replied. “It’s really important that I talk to you today,” I continued. “Oh all right,” she said, pulling the door open. “Come on in, but be careful, I haven’t had time to clean.” I held the door and watched her wade through knee-high trash to a fake leather recliner.  She turned and sat, pushing back hard to elevate her swollen legs. Oprah spoke loudly from the television three feet in front of her. The door slammed behind me and I found myself in a swamp of Styrofoam containers, paper cups, plastic lids, brown paper bags and bits of food.  I took a step and noticed movement along the floor under the mess. Things scurried for a moment and then stopped. I took another step and it happened again. “I suspect you’re here about the plumbing. I knew somebody would finally show up. The bathroom is there,” she said, pointing to a partially opened door where the tide of trash seemed to dissipate.  I steeled myself for my brief passage across the room. Ripples of movement preceded me as I carefully raised my feet above the rubbish seeking a safe place to step. As I got to the bathroom door I turned and took in the scene.

Standing on the edge of this sea of trash I was able to confirm the call I’d gotten earlier in the week. A young Hispanic man had called to tell me about an older woman he was worried about.  He was the delivery man for a pizza and sub shop downtown. He’d worked there for about a year and delivered to Mrs. Davis four or five times a week. She’d also made a separate arrangement for him to pick up wine for her at the liquor store once or twice a week. “I’m worried about her. She seems to be really losing it and her house looks like a horror movie.  I tried talking to social services and they told me to call you. They think she might be crazy.”

The assault on my senses reached a peak with the smell of the bathroom. Feces and urine filled the toilet to the brim. The seat was smudged and cracked. The sink was a brown stain of iron from the well water. The bathtub was filled with dirt and dust. I tried the sink faucet. Nothing came out. “Mrs. Davis, there’s no water in here.  Do you know why?” “The well pump broke a while ago. Aren’t you here to fix it?” she responded. “Do you mind if I look in the kitchen. I want to check the sink in there.  Is that all right,” I asked. “Sure, help yourself,” she replied.

The counters and sink in the kitchen were filled with dirty dishes, pots and pans.  Empty wine bottles littered the floor and pantry. Near the back door was a five gallon paint bucket with a toilet seat on top.  It was nearly full. I peeked out the back door and determined that Mrs. Davis had dumped many other bucketsful onto the back steps. 

I went back to the living room to see what else I could learn. I waded through the mess trying to ignore the critters under foot. “Could you turn off the TV for a minute? There seems to be a real problem with the plumbing,” I said.  “Ray’s going to fix it when he gets home.” Mrs. Davis answered, clicking off the TV with a remote. Up close, I noticed the sores on her legs and the immense swelling around the ankles.  There was also a rash on her arms and what looked like blisters on her chin that appeared to be filled with pus. “Mam, you have some sores there”, I said pointing at her arm.  “Do you have a doctor? Has anybody taken a look at those?” “I see Dr. Spanger. She’s always treated me real good.” She replied.  “Mrs. Davis, I know you live alone here, but does anyone come in to help?”  “Her watery blue eyes stared at me. “Why in god’s good name would I need help?  I’ve lived in this house almost seventy years and I think I’ve done all right by myself. I forget, why are you here?  The cable’s fixed, see?”  She clicked on the TV just in time to see Oprah giving things away. “Mrs. Davis, I’m going to leave now.  I’ll be back in a little while. Are you going to be OK?” “Could you get me some of that Lambrusco wine when you come back?” she asked.

I went back to my office and called Dr. Spanger.  She said her office had been trying to get Mrs. Davis in for at least six months. She’d even arranged transportation.  When the appointment time came Mrs. Davis hadn’t answered the door. When I explained things, the doctor let out a sigh. “I knew she was demented, but I hadn’t thought it was that bad.” I signed the paperwork and arranged for the Deputy Sheriff and ambulance to meet me at a gas station nearby and informed them of our goal.  “She’s a nice old lady, but spirited. The best thing we could do is walk her out. Believe me; you don’t want to drag your gurney through that mess.”

The EMT’s and the deputy waited on the lawn.  I went up on the porch by myself and banged on the door a couple of times. The TV was still blasting. “Mrs. Davis, it’s me, Terry Garahan. I was here a few hours ago.” I pushed open the door and started to enter.  Mrs. Davis was leaning back in her recliner. In her right hand was a pistol. “What do you want? Get the hell out of my house.  I don’t want to have to shoot you!”

I pulled my head back behind the door. “Mrs. Davis. I’m from the county. I was looking at the plumbing. Remember? Could you put the gun down please?"  Behind me, the Deputy unholstered his weapon. Mrs. Davis waved the gun around for a minute and then set it on a table next to her. “Judge Judy’s on.  I like her!” she said to the TV. Moments later the small room was filled with the Deputy and two Emergency Medical Technicians.

When I visited her at the nursing home the next week she sat on a soft sofa next to another old woman watching an episode of Judge Judy.

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.

Mental patients are more often prey then predator.

                The popular media version of the mental patient is the crazed killer who is a danger to the community. In my experience, it is more likely that people with serious psychiatric illness are preyed upon by bad people. Living in poverty in unsafe housing and marginal neighborhoods, the few belongings they have are always at risk. Many times, when people are hospitalized, their belongings are lost and stolen and when they are released they have to start from scratch. The risk of physical harm is also great. Those with psychiatric illness are not viewed as reliable reporters of crime. They can be victimized not only by the people who prey upon them, but by law enforcement and a criminal justice system that has difficulty understanding their needs.

The Story

Gil was the sort of guy that when you met him, you couldn’t help smiling. This happened as a reflection of his smile, almost a permanent fixture on his face. It was genuine and welcoming and slightly amused as if he had a private joke he was about to share with only you. The tobacco stains on his teeth and mustache didn’t deter you from smiling back. Nor did his torn jeans and flannel shirt. Part of the joy that Gil relished was his secret knowledge that he was of royal blood. This idea had come to him when he was a second year student at Cornell. Having spent a good part of the year as a history major studying European history, he’d realized that the reach of the Hapsburgs went far and wide. They had many offspring and branches that entered every royal house in Europe. During winter break, visiting his parents in Delaware, he’d quizzed them extensively on their lineage. His father’s father had come from Germany as a child in the late 1890’s. A family story was told about his great grandfather working in the Kaiser’s kitchen. In the following spring semester Gil proclaimed during a seminar that he was of royal blood, most likely a prince. The professor ignored him until he became very insistent and disruptive. Gil’s roommate could only ignore him until a chair on a platform, decorated in red velvet, appeared in room they shared. Gil sat upon it dressed in a gold bathrobe with a crown made from wire coat hangers. The other students on the floor were more frightened than amused and when campus security came, Gil meekly agreed to go to the hospital. Gil’s dad, who had an uncle and several cousins with schizophrenia, wasn’t surprised by the call, just saddened that his only son had joined what he’d viewed as a family curse.

At the time, in the middle 1970’s, claims of royal blood combined with upsetting behavior could land you in the state hospital. Gil was a model patient, cooperating with all treatments, helping other patients and participating in groups and vocational programs. Unfortunately, he never gained “insight” into his illness and it took him several years to understand that there are some things that you just need to keep to yourself.

When Gil got out of the hospital, he found living in Ithaca more pleasing than his parent’s home in rural Delaware and stayed on. During his decades here, he thought of himself as an “alternative” sort of guy and Ithaca suited him fine. Much of the time he spent here was on our downtown pedestrian mall or “commons” as we call it. Summer or winter, he’d hang out with friends, sometimes playing his guitar or joining in a chess match. His apartment was nearby and well maintained, primarily through his caseworker, Helen.

Helen was very upset when she came into my office on a Monday morning. She plopped down in a chair and said, “The McCabe brothers have moved in on Gil.” Unfortunately, I knew exactly what that meant. The McCabe brothers were a real problem. Their primary occupation was to prey on the elderly and the disabled. The local cops had trouble deciding who was a bigger troublemaker, Danny or Davey. Danny was an alcoholic and substance abuser who would drink, smoke, snort or shoot anything he could get his hands on. He was a liar and a thief and worst of all, he was a bully. He always found someone weak and frightened to threaten and intimidate. At age 42, he was a little less than six feet tall with thin blond hair, cracked, broken and missing teeth, and a pitted lined face. His arms and legs were filled with bad ink from jail. He had a mean streak that could lead him to hitting and hurting anyone who didn’t give him what he wanted.

Davey was a runt. At a little over five feet tall, he was prone to wearing cowboy boots with lifts in them, except when he was working and then he wore Converse All Star sneakers. His work was stealing, and he maintained a specialty. He stole women’s purses off the backs of chairs and floors in bars and restaurants. He was good at it. I once went into a college bar at about 11:00pm and at least a dozen women were lined up to give statements to the uniformed cop. The purses were discovered the next day floating in a creek two blocks away. Money, credit cards and all other valuables had been removed.

Bar owners and bouncers knew Davey and what he did. But he somehow managed to get past them and ply his craft. Occasionally, he was caught, but the charges never gave him more than a month in the county lockup.

When I got to the apartment, Gil answered the door. “It’s not a good time.” He half whispered. “I need to talk to you,” I replied as I entered the room. Davey was lying on the couch smoking a cigarette. Danny was asleep in Gil’s bed. A pillow and blanket were on the floor where Gil had spent the night. I banged on the bedroom door. “Danny! Danny! Hey! Rise and shine. I have to talk to you.“ I heard him curse under his breath as he pulled on his jeans and got out of bed. “What’s the problem?” “Look Danny, you know the deal. Gil has an agreement with us and the landlord that he won’t have overnight guests. If you guys crash here, he’s going to get evicted.” “He asked us to stay,” Davey said from behind me. “Yeah, I know. Gil is a really good guy. He’s always ready to help somebody out,” I said.

Fifteen minutes later the McCabe’s were gone. “Terry, I’m sorry that I got Helen so upset. I was out on the street last night and those guys didn’t have a place to stay and we got a twelve pack and I told them they could crash here.” He was smiling that winning smile. “You know those guys,” I said. “They act like your friends, but they just use people. Did you give them money?“ “Just twenty bucks. But Danny said it was a loan, he’d pay me back.” “How long have they really been here?” I asked. “About a week,” he replied.

I received a call from Helen just before the work day ended. Gil had shown up at her office in tears. He reported that a watch his grandfather had given him and a coin collection (that was hidden in his closet) were gone.

The next day I was joined by a police officer and we found the McCabes hanging out in front of the Department of Social Services. “Look guys, there’s some stuff missing from Gil’s apartment. We’re not saying you took it but you may know where it is. It might be best if it was returned,” I said. Davey replied, “Hey, there were a lot of people in and out of that place. Anybody could have taken that stuff.” “It would be really good if Gil got his grandfather’s watch back,” I strongly suggested.

The next day Helen called to tell me Gil had found his watch. “He said he misplaced it,” she said.

Over the next several months Helen called multiple times to tell me about the McCabes and Gil. She took over managing Gil’s finances and transferred the lease from his name to his elderly parents. She got their power of attorney, in an attempt to control the apartment. She and I tracked down the McCabes one Friday afternoon and Helen gave them a written notice stating that they were not allowed in Gil’s apartment under any circumstances. The next Monday Gil showed up at Helen’s office with stomach pains. When Helen pursued the cause of his distress he lifted his shirt to show multiple bruises all around his mid-section. She called me, and an officer and I met with Gil to get his story. The McCabes had shown up late Friday night and gave Gil a beating. They stayed at his apartment all week-end, having a party that got so big that the police had been called with a noise complaint.

Gil went to the police station and wrote out a statement to file charges against the McCabes. We met with an Assistant District Attorney and reviewed the charges. Trespassing was an easy one because of the documentation, including the police report from the noise complaint. Aggravated harassment was as high as they could be charged for the beating. “It’s a ‘his word against theirs’ kind of thing,” the ADA advised us. Beat cops brought the McCabes in later that day and they were both taken to the county jail, neither having bail money.

Helen called me to her office later that week. “Gil’s staying at the shelter in Rochester and they’re going to get him an apartment up there. He says that the McCabes will kill him when they get out.”

A year later, Danny’s body was found in an abandoned house.  He'd died of natural causes but nobody missed him for a week. Last month I saw Davey in a bar I frequent. When he saw me staring at him he made a quick exit. I never saw Gil again.

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.

We all seek community, some more successfully than others.

        Many people with serious psychiatric illness live in isolation.  Their behaviors can drive away family and friends. When they are symptomatic, many of their actions are misunderstood. Because of the perception of the mentally ill as dangerous, the way they conduct themselves may be viewed as threatening or menacing.  Landlords, neighbors and acquaintances fear that interactions may bring on negative consequences. When they are stable, the person with mental illness may have little understanding as to why they are shunned by those around them. In seeking companionship, they may compound the fear their behavior has created.  Most of us want to be part of a community, either the geographic community we reside in or the community of interest that makes our lives fuller. My experience suggests that even those with the most serious illness are well intentioned in their hope to make their lives better.


The Story

                     I stood behind a column, peeking around it at the café that occupied the public space between stores.  A short woman with dark hair in her late forties was moving from table to table, a coffee pot in her right hand and a large pad of paper in her left hand.  She reached over and around patrons, pouring coffee in cups, bowls and glasses.  Behind her an elderly woman began to rise from her chair, pushing herself away from her finished meal.  “Sit down! You sit down!” the younger woman screamed as she turned, facing the tables behind her.  “Don’t get up until I tell you to get up.  Do you understand me?”  The elderly woman regained her seat, clutching her purse in her lap. It was late morning.  The café’s twenty tables were only half full.  The rest were set for lunch. I could see two cooks and two waitresses crowded together in the small kitchen.  They had closed the kitchen door and were staring at me from behind the pass through, one cook clutching a large knife. 

Directly across from me and down the hallway, a police officer gave me a thumbs up.  I held my hand up motioning him to wait and walked slowly toward the woman with the coffee pot.  She put it down as I approached and turned to fully face me.  “Rosa,” I said. “What’s going on?”  “So they called you?  Why is it that every time I get things straight in my head, every time I get my life together you show up?”  She was an unattractive woman with a big nose, bulging eyes peering through large black framed glasses and hair that had not seen a comb in months. She had on a flowered knee length skirt with a dungaree shirt jammed into it. Over this she had a bright vest that someone had bought at a tourist shop in Central America.  A backpack rested on her back, a paisley bag on her left shoulder, a waist pack cinched around her stout middle.  A pair of torn black hightop sneakers without socks completed her outfit.  “Why don’t you go away?  Why don’t you just mind your own damn business and get the hell out of here?” she screamed.  “Somebody called me.  They were worried about you.  When they call I have to come, you know that.  Why don’t we go someplace else to talk?  Everybody doesn’t need to know your business.”  I could sense movement behind me as people began to leave their tables.  “I hope you’re happy?”  Rosa said as she leaned on the table closest to her, palms down, her notebook under her arm.

I looked over my shoulder to find the police officer escorting people down the hall.  When I turned back, a mass of cheese, avocado and sprouts on toast exploded in my face, the small fat hand rubbing it into my nose and eyes.  Moments later, Rosa was on the ground screaming at the cop wrestling her one cuffed hand behind her to join under the backpack with the other hand waving in front of his face.

I’d known Rosa for many years.  I’d first met her in the 1970’s, when I coordinated programs for mental health patients being discharged from Willard Psychiatric Center during the late stages of deinstitutionalization.  Rosa was a revolving door patient who would become briefly stable and discharged and never keep appointments or follow up with treatment.  As she got older, she cooperated with treatment more often, but still had periods of bothersome bi-polar symptoms.  Several months earlier Rosa had visited the psychiatrist in our office stating that she no longer needed medication.  ‘I’ve been doing some research”, she had told the doctor, “And I believe that I have aged out of my illness.”  She then presented copies of journal articles to support her proposition.  She had a master’s degree in city planning and was able to use her academic background to articulate her case.  What she presented was her decision.  It was not open to discussion.  When the doctor had me join them, she said, “He may be in charge here, but he is not the boss of me.”

The calls started to come in shortly thereafter: her grown daughter pleading “Isn’t there anything you can do?  Can I sign a paper?  Do we have to go through this all again?  We know what’s going to happen.  I’m the one who has to clean up her mess.”  Her ex-husband stating, “If she shows up again I’m going to press charges.  I don’t care how crazy she is, she can’t just show up at my house threatening my new wife.  If she goes to jail, so be it.”

Rosa owned a beautiful home in a neighborhood of small ranch houses on a hill overlooking the city.  I’d been there in the previous year to drop off a prescription that the doctor had forgotten to give her.  The small inheritance she’d used to buy the house had also been spent on some nice antiques that she had restored.  At the time she’d asked me in to take a tour and be dazzled by the views of Cornell and the valley below.  “What do you think?” she’d asked, smiling.  “I’m jealous,” I replied.  Having seen Rosa years earlier stripped to her bra and panties on a foam pad in the isolation room at Willard, screaming and banging on a concrete wall, I was pleased to see the life she made for herself.

I visited again, after the calls began.  When she opened the door, it appeared that a giant had picked up the house and shaken it like a snow globe.  The rug was bunched up, the furniture overturned.  Books pulled from bookcases, dishes dirty everywhere.  “It took me a while, but I found it.”  In her hand was a binder containing her master’s thesis.  “Look at this,” she said guiding me to the kitchen table where a large piece of poster paper was unrolled.  Books were piled on one corner; duct tape held the other three.  A slide rule, protractor and plastic ruler, educational instruments long abandoned by academics, were at the bottom of the drawing. Her work showed a crude illustration of the valley as seen from her window.  Near the top were wavy lines indicating the multiple rivers, streams and creeks flowing down the hills and into the lake.  Each of them was well marked.  At right angles to these lines were broad strokes made by magic markers that seemed to enter buildings erected on the top of the hill.  “Well!  What do you think?” she asked.  “I don’t know what I’m looking at,” I replied.  “Are you stupid?  It’s the valley.  See these?” she said indicating the wavy lines. “This is all water and water is power.  You move the water from the streams and rivers, through the pipes and into the generator buildings.  The wheels spin and the water falls downhill into the lake.  The people who first lived here understood that.  That is why they settled here.  For the last 100 years we’ve ignored it.  I’m the only one who understands it.”  She walked over to the picture window.  “Look at that!  Ithaca doesn’t need to have one once of electricity come from the outside.  I’ve solved it.  That smelly coal plant up the lake can be torn down.  It’s time for old to be new again.” She began to sing and dance. “It’s time for old to be new again; it’s time for old to be new again.”

“Rosa?  Rosa, I need to talk to you.  Your daughter called and…?”  “Get out!” she yelled, not touching me, but moving me toward the door. “That little bitch is an ingrate.  Her father raised her to hate me.  He has always been jealous of my success and he can’t wait to see me fail.  When people see what I’ve accomplished, what I’ve given back to this community, then he’ll have to apologize. Now get out and don’t come back and don’t tell anyone about my plan.  I want to have an unveiling at City Hall when it’s all complete.  If you tell anyone, anyone at all, I’ll sue you.  Don’t think I won’t.  The house shook when the door slammed.

Two days later I was at the city engineer’s office, a police officer at my side.  “I’m going, I’m going.” Rosa said, gathering her things. “But you haven’t heard the last of me.”  That afternoon, her ancient Volvo wagon was spotted parked sideways at the food co-op.  Later, when I’d responded to the convenience store at the edge of town, the woman behind the counter said, “I don’t know what her problem is, but she better not bring it in here again.”  Eventually I got a call from the woman who owned the café.  She’d called just before Rosa had taken over her restaurant. “I don’t want her to get in trouble,” she’d said.

I sat across from Rosa at her hospital discharge meeting nearly a month later. “Sorry”, she said. “I know you’re trying to help.  But sometimes you’re really a pain in the ass.”

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.

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.

Say “person with schizophrenia”, not schizophrenic!

                When someone is called a schizophrenic, the word tends to describe them as a mass of symptoms that defines them.  Saying a person has schizophrenia better describes a complex person who is diagnosed with a disease. I have met thousands of people with schizophrenia. They are brothers, sisters, sons and daughters, mothers and fathers. They are liberal and conservative, Jewish, Catholic Protestant, Hindu and Buddhist. They are smart and stupid, interesting and dull. They are never the same although they often have symptoms that are similar.  They have hobbies and interests, hopes and dreams.  Most importantly they love and are loved.

The Story

Her young son stood behind her when she opened the door. He was 9 or 10, with jet black hair and big brown eyes. “I.D,” she demanded.  When I handed it over, she looked closely at the picture and at me, and then examined the lamination to make sure it had not been tampered with.  “We’ll talk outside.  You stay here and lock the door,” she said to the boy. She was a tall white woman 5’9” or 10”, with long brown hair.  Her face was thin, pinched and with a small mouth.  “I don’t know why the cops came, I wasn’t bothering anyone.  I was just talking to my son.”  “I guess the neighbors thought maybe somebody was bothering you or hurting you or your son,” I said.  “Also, you gave the police a false name and your son hasn’t been to school.”  “I told them that I had to escape my ex-husband who is trying to kill me. He has access to all FBI and CIA records and if I use my real name he can easily find me.  He’s found us in Flagstaff, Arizona, Rockford, Illinois and last month in Charleston, South Carolina.  He even had me raped in Charleston,” she replied.

The officer, who alerted me to Kristen and her son Adam, had contacted the Charleston police for information. They’d had a dozen difficult contacts with Kristen in the six months she lived there and confirmed the sexual assault had taken place about a month earlier.  They had a suspect in the case, who was also being investigated for other rapes, but they did not have enough for an arrest. 

Kristen claimed her husband was a member of the Noriega family and had been working as a CIA informant and as a drug runner and was part of the “Miami Mafia”.  “He has a long reach! People think I’m lying or crazy, but I know it’s true.  Look at the things that happen to me. How else can I be followed all over the country?  There are things that go on that we can see that are on the surface, and there are things that go on under the surface.  The things on top are controlled by the people underneath. I’ve been working for a number of years on a book that will expose the connections between corporations and the mafia.  There are great libraries here at Cornell and I’m going to spend time doing research so I can expose the system that nobody sees.  I hope I can hide out long enough to do my work.”

 “It sounds like you have really been through a lot,” I said.  “We keep our information strictly confidential.  The records we keep are only paper records.  We don’t keep any computer records at all. We won’t for at least a few years.  There is a woman I work with named Anne who specializes in helping women who have been oppressed by the men in their lives.  She also helps women who have been sexually assaulted. I’d love for you to meet her.  Would you do that?  And your son has to go to school. I’ll talk to them about securing his records.”

The psychiatrist who presented her case at our intake meeting was not optimistic. “This 36 year old woman had an onset of symptoms of paranoid schizophrenia at about age 22, shortly after her college graduation. We have received hospital records from her home town, Baltimore.  She was reluctant at first to sign a release, but after much discussion and prompting, she agreed that it would be helpful for us to confirm facts as she states them.  She is a traveller.  The only region she hasn’t been in is the Pacific Northwest and not for want of trying. She says that she was in Salt Lake City at the bus station with a ticket to Seattle when she saw her husband at the ticket office talking to the agent. Kristen says that she is happy to talk to Anne, but is unwilling to take medication.  I also saw her son and spoke to him with her present and by himself.  He is a nice young boy.  Mostly, he’s worried about his mom, who can go on rants about various delusions she has.  That was what the original call was about.  As far as the ex is concerned, I don’t know if he’s a good guy or a bad guy.  At the moment, we have no reason to look for him.  What I do know is that she has had some very bad things happen to her and for the sake of her son; it would be nice to try to engage her and have her want to stay here so her son can have a life.  But if she’s still here six months from now I’d be surprised.”

I heard the piano when I came down the stairs. Anne had called me and asked that I come down to the day treatment program.  It was late in the afternoon, the program was over and when she said it wasn’t a crisis, I’d been relieved.  The old upright was in a corner and usually it was subjected to unending versions of “Chopsticks”.  The sounds that came from it now were melodic and sweet. I recognized the song as an old standard, What a Difference a Day Makes.  When I was able to look over the top of the piano I was shocked to find a little boy with ink black hair and brown eyes.  His small hands moved easily over the keys, his gaze intent on the sheet music in front of him.  He picked up the tempo and the song took on a different flavor.  “I heard it played faster once,” he said, looking up at me.  An hour later, after preforming songs from West Side Story, some ragtime, and then Bach and Chopin, Kristen came in to get him.  “He’s good, isn’t he?”

Anne told me that Kristen recognized Adam’s talent early on.  In each community they had lived, Kristen had arranged piano lessons.  She’d scrimped and saved and traded labor and bartered belongings for the lessons.  What was clear was that this very charming and pleasant young boy had exceptional talent that needed to be developed.

Kristen’s agitation, including yelling, continued to cause problems.  The psychiatrist had given her a prescription for anti-psychotic medication that he said would “calm her”.  He told her that she was in charge of her treatment and she should take the medication if she felt an episode coming on or if the neighbors complained or the police showed up.  “It does take the edge off,” she told him at their next meeting.

After about eighteen months passed, Adam was nearing the completion of his first entire year in one school.  Kristen had joined our day treatment program and was a regular, cooking and serving lunch to some severely disabled clients.  She came to my office one day in April to brainstorm about ways to finance a summer arts camp for Adam in a nearby city.  I directed her to some local charities that I knew could help.  When she came up a few hundred dollars short, we took up a collection and I told her it was from a special charity.  It took three buses and a mile walk for her to take him there.  She’d spent the night on a bench in the bus station before returning the next day.

The regional orchestra that Adam performs with now is a five hour drive away.  I saw him just after he graduated from college.  “My mom’s crazy, but she loves me,” he said.

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.

If you have a serious mental health problem, find a skilled helper!

There are many different kinds of mental health professionals.  Often they claim a broad knowledge base and are willing to see anyone who comes through the door.  If you have a serious mental health problem, check around. Contact your local mental health association or the local affiliate of the National Alliance for the Mentally Ill, (NAMI).  Have a brief phone or face-to-face consult, which should be free.  Make sure the person is skilled and knowledgeable.  Talk about cost and insurance.

The professional should be helping you set goals and objectives early in the process.  Avoid “chit-chat” therapists who don’t have a plan and talk to you like an interested friend.  You ought to know where you are going in treatment and how you are going to get there.  You should be learning skills and be able to apply them in the real world.  Insight is not enough!  Change needs to take place.  A skilled mental health professional should know about “talk” and “non-talk’ treatments and be open to at least discussing all possibilities.  If, after three months, change is not taking place, find another professional. 

The Story

The smell of gasoline was frightening. It enveloped the entire space.  The empty gallon can was next to her on the concrete floor as she sat there sobbing, her hair and clothing covered, soaked with the fuel that was slowly evaporating. In her hand was a shiny zippo lighter. Its reflection sent splashes of light throughout the two car garage.  I sat on an overturned five gallon bucket near a side door to the room. The cars were parked in front and I could see the lights of the police cruisers flashing against the leaves of the trees in the early autumn afternoon. She was a thin, small white woman in her mid-forties. Her damp hair may have been blond. Her white sleeveless blouse and grey sweatpants were saturated, her feet were bare. The garage was silent except for the buzz of the florescent bulbs overhead.

The therapist had come running down the hallway waving a folder in her hand about two hours earlier. “Terry, Terry, you’ve got to help me. She’s going to kill herself. This time she’s really going to do it.”  I sat her down and had her tell me the whole story. Her client had a long history of depression. She had been seeing her for eight or nine years.  Our new psychiatrist had recommended medication for this patient and Diane, the therapist, had not only resisted, but had poisoned the person’s attitude regarding medication. She was an old school therapist who was taken to saying, “People have to work through their issues. Medication is just a short cut, a band aide that doesn’t solve the problem. They need insight and understanding into the reasons they are depressed. They need to take responsibility for their part in their depression.”  This particular therapist had a caseload of depressed women who she had been seeing for years and none of them ever seemed to get better. Her notes always indicated that her clients were “gaining insight” or on the verge of having a “breakthrough”.

When we had reviewed this case a few months earlier, we had noted the length of time the patient had been in treatment without real progress. Our recommendation was to begin a trial of Prozac, a medication that had only been available for a short time. I understood the resistance to the older antidepressants, the tricyclics, like Elavil and Imipramine. Those medications were very useful except for a major problem. A month’s supply would kill you. Prescribing the means to end your life to a depressed, suicidal person was risky business and in the thirty years they were in use, these medications killed many.  Prozac did not have this problem and was a game changer. Professionals had to be convinced, but many didn’t have an interest in rethinking the way people with serious depression might be helped.

The therapist was rocking back and forth in her chair saying, “Hurry, you’ve got to hurry.”  I scanned the folder in front of me and called the sheriff’s dispatcher. The response was: “We’ve got a car out on the lake road. He can meet you and you can follow him out.”

The initial call had come from the woman’s boyfriend. Lenore had been having increasing suicidal thoughts and had been fighting an impulse to kill herself for an entire week. The boyfriend had locked his rifle in the car, hid all the sharp knives and cleaning products and hoped Lenore would make it to her next appointment. That morning they had argued about something minor and he had gone to the store. When he returned, she was in the garage covered with gasoline. “Stay away from me,” she had screamed at him, and he called her therapist. He went to the door of the garage and told her someone was coming out to talk to her and proceeded to the end of the driveway to wait.

I pulled up next to the deputy’s Crown Victoria and briefed him on our call.  “Follow me. Stay close,” he said smiling, and then his wheels spit gravel at me as he took off, his big lights flashing.   My official county car was perhaps the worst car ever made, the Ford Escort. It was small and cheap and when you stepped on the gas the engine made a roaring noise and the car hardly moved. We had a twelve mile run into the country and even though I repeatedly called on the radio to slow down, the deputy kept us moving at about eighty. The front end shook, the doors rattled, wind made the hood lift slightly as if it would fly into the windshield. We passed semi’s from the salt mine and school buses full of kids and when I realized my life depended on it, I got about six feet behind that cruiser and stayed there.

The boyfriend was leaning against a fence having a smoke when we got there. “I can’t take this crap much longer,” he began, and I had him fill me in on recent events. The deputy said, “I called an ambulance. I’m going to wait out here. If you need me call me.” I replied, “Get the fire department too, and remind them both to approach silently.  I don’t want to have to yell over the sirens. And tell them to stay out until I call them.”  “You’re the mental health expert!” he responded.

The adrenaline from my drive was beginning to dissipate when I opened the door to enter the garage. The smell was overwhelming. “Lenore?” I asked, as I observed the figure on the floor. “Don’t come near me,” she yelled, flipping open the lighter. “I’m going to stay right here. Do you mind if we talk?” I asked, introducing myself. “I think we met once in the waiting room, can I open the window? The fumes are making me a little dizzy. I’m going to sit on this bucket.” “Ok, but just stay away,” she replied.

“Tell me what’s going on?” I asked. I want people in crisis to tell me their story and she did. It was a sad story, a difficult story, one that had no simple resolution. It included a problematic childhood and the betrayal of friends. She spoke of missed opportunities and unfortunate decisions that created unpleasant consequences she had to live with. There was a sadness that permeated everything.

“I’m so sorry. That sounds awful,” were my responses to the pain she expressed.  “Why now, why today?” I asked.  “There was nothing special. When I woke up I just felt like I couldn’t deal with it anymore. There is no end in sight and I’m so tired.” She began to cry, first tears running down her face, then sobs that shook her body.

“How about this? Clearly you are overwhelmed and can’t see any resolution to the problems you’ve described, but you’ve also told me about good things in your life.  What if we get you some place where you are taken care of, where the worries can be put aside and you can try to focus on the few things that have taken you to this point?”  She slid the lighter across the floor to me.

When she was discharged a month later on Prozac, I assigned her to a new therapist. Three months later Diane resigned, wanting to devote herself full time to her private practice.

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 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.

Unconditional support provides positive outcomes

Schizophrenia is a very isolating disease. The positive symptoms; hallucinations and delusions, are not shared experiences. The expression of these symptoms  tend to frighten and drive away those closest to the person experiencing them.  The negative symptoms: lack of interest in the world and a diminishment in the ability to experience pleasure, further separate the person from their surroundings.  In order to be successful in treatment, an individual must have someone on their side. This unconditional support is often the basis for positive outcomes in treatment.  Families should be natural allies, but may end up being seen as enemies as a result of symptoms.  Friends are hard to maintain and professionals who may be caring have to maintain a distance.  However, support must come from somewhere.

                As we recognize schizophrenia for what it is, a brain disease, we must also recognize that we can’t abandon people because they have symptoms that are difficult or unpleasant.  This story speaks to the kind of support that creates a successful outcome.

The Story

“The kid is just standing there in the main library, not moving, not really saying anything. When I try to get him to come with me or do anything, he just looks at me sideways with a smile on his face.  When he says something, it’s just gibberish.  The sergeant says you need to come up and take a look at him. He’s not really causing any problems, breaking the law or anything, no danger to self or others, just out of it.” I put down the phone and drove to Cornell.

            He was halfway down an aisle in the stacks. He was moving his head up and down slowly, in a jerky motion, the way a parrot does. The cop had gone to the other end of the aisle to try to control the situation if things turned to crap. Another cop was behind me. No one knew the young man’s name, but he looked like a student.  White kid in his early twenties, 5’10” short brown hair, average build, wrinkled jeans and a tee shirt.  His hands and arms were also moving in a slow jerky motion almost like Tai Chi. “Hey”, I said walking up to him, but not within arm’s reach. “I need to talk to you. What’s your name?”  He looked at me and smiled.  I continued, “People are a little concerned about you. You’ve been standing in this same spot for about five or six hours and you don’t answer when people try to talk to you.”  He didn’t look at me but began to speak, “You or not you, to be or not to be.” When he finished he started laughing, then tilted his head up and to the side, obviously listening to voices that only he could hear. “I’ll be right back,” I said as I went to the cop behind me to make a request. I returned to the young man and attempted to engage him in a variety of ways while I waited. Nothing worked.

Ten minutes later an EMT showed up with a gurney. I rolled the gurney between the shelves and parked it next to the young man, locking the wheels with my feet.  I pulled down the top sheet and said, “It is very important that you lie down on this. Your legs are sore and you are very tired. Your back must be stiff too.  If you lie down on this, you will feel much better. Take two steps and climb up on here”, I said, patting the bed. The jerky motion stopped and he took one big step and settled his rear on the gurney, then turned to lie flat, his arms at his side, eyes staring at the ceiling. I pulled the sheet over him and buckled a belt over his chest, pinning his arms. The cops and EMT’s took over, adding more belts and rolled him out the door.  Before they put him in the ambulance, an officer patted him down and got a wallet from a front pocket.  His name was Louis and he was a junior at Cornell. Before I left campus I went with a cop to his dorm to talk to his roommate. I wanted to get as much information as I could to give to the hospital for assessment. The emergency room folks could call his parents.

            “I haven’t seen him for a couple of days. We’ve been roommates for two years. He’s a good guy, English major. But lately he’s gotten really strange. Sometimes he just stares into space or he’ll disappear for a day or two. At first I thought maybe he had a girlfriend, but I don’t think so. We really hang out with different people. As a matter of fact, he doesn’t really hang out much at all. The first couple of years he was doing club volleyball, then that stopped. I don’t know how he’s doing in his classes, but he did pretty badly last semester. I hope he doesn’t flunk out.”  He went on to say he didn’t think that Louis used drugs and that he hardly ever drank. “He always worked hard and kept to himself. You were more likely to find him in the library on Saturday night than at a bar. But one thing he does do is attend that little church on the edge of college town. I went with him once, not holy rollers, but sort of fundamentalist. It wasn’t for me, so I never went again.”

            Louis was from Queens, in New York City and it seemed that this was not the first time he appeared to be having a psychotic break. The previous summer he’d been sent to the hospital after walking among traffic on a major roadway. At the time, his parents were convinced that someone had “slipped something into his drink.” According to the record they were unaware of any mental illness on either side of their families although on the husband’s side there was strong evidence of substance abuse.

            He was referred to our clinic from the hospital after a two week stay. Mental health services at Cornell are very good, but they tended to defer to our greater experience and services when a person has a chronic psychiatric illness.  When we first met, Louis was somewhat coherent. However, it was clear he was very symptomatic with what are known as positive symptoms like hearing voices or feeling controlled by others. Much of our initial conversation was interrupted by Louis cocking his head to one side, concentrating on the words the other voice spoke to him.  He was a very smart, articulate and pleasant young man who agreed that he needed a medical leave from the university.  He described a family situation that was less than ideal and decided to stay in Ithaca.

            Louis took medication like many other patients at our clinic. As the unpleasant symptoms began to diminish, the unpleasant side effects of the medication began to be a problem. Feeling better often made things worse. He started to take medication on an “as needed” basis and it did not work very well. Missed appointments became common.

I saw him walking slowly down the street one day and approached him. “I want you to come and see me,” I said. “I see you and I see beyond you,” he replied laughing. As we walked, he made eye contact and bowed slightly to the people walking by.  “My subjects,” he explained. In fact, his contagious smile and nodding elicited a similar response from everyone we passed. “You need to start taking medication again!”  I stated emphatically.  “That’s right,” he exclaimed pointing in front of him. “That’s right!” he said again. It took me a moment to understand that he was pointing at a line of three or four cars in a turning lane in front of us, their right blinkers on.  That afternoon he started an injectable medication that he responded well to.

            Two weeks later, Louis showed up at my office with a middle-aged man dressed like a golf pro. “I’m Pastor Johanson, Gary Johanson. Louis belongs to my church.  He’s been a member for two years. He’s told me a little bit about his problems and told me about you. Last Sunday during service he spoke about some of the things on his mind. Not all of it made sense. I wonder if there is a way we can help.” I asked the pastor to leave the room for a moment to make sure Louis wanted this man involved.  When the Pastor came back in, I said to him, “Louis has been having a difficult time following through on his treatment. He certainly needs encouragement to be fully engaged in the process.”

            On Sunday, a month after meeting with Louis and his pastor, I found myself at the podium in the front of their church. Nearly eighty people had stayed to hear my talk about mental illness and treatment. Pastor Gary had purchased ten copies of Surviving Schizophrenia, by E. Fuller Torrey, and people agreed to read it and pass it on.  Louis sat next to the pastor in the front row. His smile was less infectious, but more genuine. When my talk ended, Pastor Gary offered juice and cookies in the church basement. But first he asked us to bow our heads, “Merciful God, let us join together to help and heal each other.”

The Stories

The stories are my remembrances. Each of them is based on a true event in my work for Tompkins County Mental Health in Ithaca New York.  I have changed the names 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.