Christine Johnson’s Story

I was always aware that there was something wrong with Grandma Beulah. It was obvious. I only saw her at family holiday dinners when my aunt and uncle went to pick her up. Once in a while, during these events, she would declare in a loud voice, “I’m crazy.” Someone would always pipe up and say, “No you’re not, ma. You’re just fine.” Of course, this rang hollow as she had lived in an asylum for twenty years.

When I was three she was finally released from Pilgrim State. My mother had been four when Grandma Beulah went into the psychiatric hospital for a six month stay, which turned into twenty long years. During that time Beulah’s own daughter, my mother, grew-up and had a daughter of her own, me. Beulah was locked away during all of it.

At about ten years old I started asking questions about Grandma Beulah. I wondered what was wrong with her. My mother told me that Grandma had been lobotomized and had the mind of a child because of it. She added, “The doctors didn’t know any better back then.” I accepted it, as my family did. Children accept most anything.

Grandma Beulah was fine to deal with at holidays. You could talk to her and ask her questions and she’d respond normally.

“Cold out, isn’t it, Ma?” her son-in-law would ask.

“Oh yes!” She’d say, then she’d pause. Her eyes would drift over to me and she seemed to become overwhelmed with giddiness. She’d squeal, “Oh, Chrissy! You’re so beeeeutiful!”

I’d smile shyly. I was shy then.

“Isn’t she beeeutiful?” Grandma would ask the room.

Everyone would grin and nod as they humored her.

There was something missing from Grandma’s interactions. She enjoyed me and my young presence, she smiled beamingly at me, but it was a caricature of joy or love; a phoned in performance put on to facilitate social interaction. Emotions were too abstract for her, too involved. She was unable to focus on everyday conversation or activities for more than a minute or so before her attention would wander away as she stopped listening. Complex emotions like love or anger seemed beyond her capacity.

Beulah never asked me about school or my friends because if something wasn’t happening in the present, it didn’t really exist to her. She had no thoughts beyond her most basic desires, primary of which was cigarettes.

During her holiday visits she would often ask when it would be time “to go home”. Grandma Beulah had become a totally institutionalized person: dependant, passive, unable to care for herself, and in need of the comfort of the familiar. She never dreamed that she had the power to ask to be taken home, she just wanted to know when someone was going to get around to transporting her there – sort of like wondering when the next bus was going to arrive. She didn’t appear to feel a longing in the sense of homesickness, it was more like boredom, a desire to go back to her “comfortable place” where things felt right.

At that point in time the “home” to which Grandma Beulah wanted to return was what is commonly referred to as a “welfare hotel” in Long Beach, NY. That’s where she lived after she was released from the hospital in 1972. There were supposed to be nurses and orderlies and housekeepers there to help take care of her, but there was never funding for staff like that. They made some lame attempts to care for her, but it was Aunt Janice who visited her every week to give her a bath, straighten her room, and make sure her basic needs were being met.

Beulah never possessed anything of value, not even a TV. It would have just been stolen from her. She did have something she hadn’t enjoyed since she was a much younger woman –her freedom. Slowly she recovered from institutionalization and began to relish her unfettered existence. She spent her days talking to people, chain smoking, wandering around her neighborhood, and sometimes she drank. She never caused any harm and we didn’t feel that she should be stopped from getting drunk sometimes. Grandma was an adult who’d not only had a hard life, she’d also had enough of people controlling her activities.

Beulah melded into the fabric of broken people who live underfoot in our society – the hopeless alcoholics who’d lost it all, the released mentally ill, the burnt-out dopers, those who lived forgotten. Some “regular folks” who saw her might have assumed she was homeless with her Salvation Army clothes and daily wandering, but she was actually enjoying her freedom in ways that seemed to make her more content on some level.

After living on her own in the welfare hotel for more than fifteen years, Beulah finally did suffer the consequences of one of her vices; she developed emphysema from decades of heavy smoking and had to be hospitalized. The only place we could find for her was a nursing home, the new involuntary caretakers of the older, physically infirm, mentally ill population. The staff was unable to cope with the comparatively young patient who was argumentative and combative over her new restrictions. They kept her chemically restrained with heavy doses of medication, to the point where her hands shook constantly, a condition known as Tardive Dyskinesia. However, no matter how far gone Grandma Beulah appeared, she always remembered to ask for a cigarette, even years after she’d had her last one.

During her holiday visits she would often ask when it would be time “to go home”. Grandma Beulah had become a totally institutionalized person: dependant, passive, unable to care for herself, and in need of the comfort of the familiar. She never dreamed that she had the power to ask to be taken home, she just wanted to know when someone was going to get around to transporting her there – sort of like wondering when the next bus was going to arrive. She didn’t appear to feel a longing in the sense of homesickness, it was more like boredom, a desire to go back to her “comfortable place” where things felt right.

At that point in time the “home” to which Grandma Beulah wanted to return was what is commonly referred to as a “welfare hotel” in Long Beach, NY. That’s where she lived after she was released from the hospital in 1972. There were supposed to be nurses and orderlies and housekeepers there to help take care of her, but there was never funding for staff like that. They made some lame attempts to care for her, but it was Aunt Janice who visited her every week to give her a bath, straighten her room, and make sure her basic needs were being met.

Beulah never possessed anything of value, not even a TV. It would have just been stolen from her. She did have something she hadn’t enjoyed since she was a much younger woman –her freedom. Slowly she recovered from institutionalization and began to relish her unfettered existence. She spent her days talking to people, chain smoking, wandering around her neighborhood, and sometimes she drank. She never caused any harm and we didn’t feel that she should be stopped from getting drunk sometimes. Grandma was an adult who’d not only had a hard life, she’d also had enough of people controlling her activities.

Beulah melded into the fabric of broken people who live underfoot in our society – the hopeless alcoholics who’d lost it all, the released mentally ill, the burnt-out dopers, those who lived forgotten. Some “regular folks” who saw her might have assumed she was homeless with her Salvation Army clothes and daily wandering, but she was actually enjoying her freedom in ways that seemed to make her more content on some level.

After living on her own in the welfare hotel for more than fifteen years, Beulah finally did suffer the consequences of one of her vices; she developed emphysema from decades of heavy smoking and had to be hospitalized. The only place we could find for her was a nursing home, the new involuntary caretakers of the older, physically infirm, mentally ill population. The staff was unable to cope with the comparatively young patient who was argumentative and combative over her new restrictions. They kept her chemically restrained with heavy doses of medication, to the point where her hands shook constantly, a condition known as Tardive Dyskinesia. However, no matter how far gone Grandma Beulah appeared, she always remembered to ask for a cigarette, even years after she’d had her last one.

It was at this point, in my late teens, that I was old enough to really become aware of Grandma Beulah in a mature way. I started asking questions. What exactly had been wrong with her that drove her to the asylum in the first place? Much to my surprise, no one knew, not even my aunt who had been Grandma’s devoted caregiver for decades.

During this period of curiosity on my part, Grandma Beulah suddenly died. I was shocked, but not completely surprised. The last few times I had seen her she was muttering slurred words in a deep, drugged-out voice that I couldn’t understand. Her hands trembled and she nodded out like a heroin junkie. I was consumed with compassion for her, for our family, for the suffering that we had all endured. I vowed to find out all there was to know about her troubled life.

First I began a quest for her medical records from Pilgrim State. I wanted to know once and for all what illness it was with which she had been diagnosed. My first request to Pilgrim, which included notarized letters of permission from my mother and aunt, was answered a few weeks later with a two page summary report. I read with keen interest, and a bit of discomfort, as my grandparent’s marital problems, my grandmother’s sometimes sexually tinged delusions, and their raw strife was revealed to me.

I learned that she had been diagnosed with Dementia Praecox, which was the old term for paranoid schizophrenia. While the diagnosis seemed accurate in some ways (she certainly was delusional and her delusions were decidedly paranoid), in other ways it didn’t fit. For example, she was in her early thirties when she first became psychotic, which is very late in life for schizophrenia to manifest itself.* (see endnote) Also, her illness developed as her family’s financial situation had deteriorated, which seemed to be the catalyst for her problems. Maybe she was having a long psychotic episode. To make any determinations I needed more information.

I wrote back to Pilgrim and asked for all of Grandma Beulah’s medical records. This time they responded with a four-page summary. In my response I pointed out that Beulah had been a patient there for twenty years and surely there must be more information than could be held on four pages. I asked for copies of it all. They responded with an invoice for four hundred and fifty dollars for “copying fees”, which they are entitled to charge by law. I sent a check to them the very same day. That resulted in a phone call from a snarky records manager who wanted to know why I wanted the file. I told her the truth –for genealogical purposes. She acquiesced and soon I had hundreds of pages of records to sift through.

It was fascinating. There were letters Grandma wrote with her own hand, dripping with delusions and the imagery of psychosis. There were ward notes, letters from Grandpa asking that she be released, and snotty hand-written notations from her doctors virtually mocking grandpa’s requests. My heart pounded as I absorbed the doctor’s condescending attitudes toward our family. This was not a simple case of overzealous psychiatry. It was callous disregard. The disdain with which they discussed her was heartbreaking.

According to the notes, the lobotomy seemed to be nearly a punishment for her attempt to send letters to the FBI and White House. Everything I had come to believe about what had happened to her was refuted in their own handwriting. She was in a factory, a warehouse, a prison, and they had no interest in dealing with a rambunctious patient who was making life difficult.

It was at that point that I decided to become active. As a librarian and historian, I know that this tragedy cannot be glossed over. It must be brought to light and examined by society, the same way the Thalidomide tragedy and the Tuskegee study have been exposed.

Those who forget their mistakes are bound to repeat them. I will not let the world forget.

* I have since learned that it is not that uncommon for schizophrenia to develop in a person in their early thirties. I decided to keep the story as it was because it reflects my beliefs, thoughts, and feelings at the time. But in the interest of accuracy I felt the need to correct this factual error.