Personal Accounts: First-Person Accounts in the Journal's First Quarter-Century

Psychiatric Services began regular publication of first-person accounts of patients' and family members' experiences with mental illness and treatment in 1994, in the new Personal Accounts column. But the journal occasionally published various forms of first-person accounts long before then. As part of Psychiatric Services' observance of its first half-century of publication, this column offers edited excerpts from such accounts drawn from the journal's 50 years.

This month's column focuses on accounts published between 1950 and 1974. The second 25 years will be covered in the June issue.

The six excerpts here come from most of what was published in this vein in the journal's first quarter-century. The first excerpt (1), originally published in a patient newspaper, appeared in 1952 in Mental Hospitals, the journal's name from 1951 to 1966. Four excerpts are from letters from patients or family members (2,3,4,5), sent mainly to clinicians and published between 1960 and 1962. The final excerpt was submitted as an article by a former patient (6) and was published in 1971 in the journal, by then renamed Hospital and Community Psychiatry.

Broadly speaking, each article focuses on one topic: overcrowding in a large hospital, stigma, hopelessness, abandonment, family burden, and community reintegration.

Overcrowding

The following excerpts from "A Patient Discusses Overcrowding" come from an editorial that first appeared in a monthly patient newspaper. The writer describes how an overcrowded environment makes even well-oriented patients feel resentful and confused. This journal published a fuller version of the editorial in 1952 (1).

"Many of the wards in this hospital allow less than the minimum space planned between beds in order to make room for more beds in a row. In addition to this, some wards take up part of the aisles of the dormitories with beds. One ward is so crowded that the living or day room area has beds in it. Only a few wards can boast the luxury of small bedside stands for the housing of such necessary items as nightclothes, soap, towels, and other toilet articles. To further complicate this arrangement, the hospital enforces a rule forbidding the patient to store any items under his mattress.

"Entering the crowded receiving ward the individual experiences the usual feeling of uncertainty which goes with an adjustment to any strange and new environment whether it is a new job, a new town, or joining a new organization. In the present day mental hospital this feeling is further intensified by the abruptness of attitude and attention of the 'welcoming committee,' doctors and technicians, who are swamped with the number of patients for which they are expected to be responsible….

"Ostensibly people who are mentally ill suffer from greater difficulty in performing the simple functions of daily living; i.e., bathing, dressing, keeping clothes and beds and other personal objects in order, eating, sleeping, and rising. Yet these same people are required, upon entering a mental hospital, to adjust to a routine far more complicated than any routine necessary in the normal everyday world outside….

"Even that group of patients entering the hospital, well oriented in the outside world but suffering from some personal emotional problem for which they are sincerely seeking guidance, react with normal feelings of resentment, confusion, and uncertainty to the sharp adjustment expected of them in the set-up of the present day mental hospital, which does not yet meet the standards set up by the American Psychiatric Association….

"Patients frequently are heard joking about the adjustment they try to make to the situation…stating that if one is able to learn the complicated routine of living in a mental hospital, they feel one should be able to function adequately anywhere."

Stigma

A 41-year-old woman with schizophrenia wrote to the superintendent of State Hospital North in Orofino, Idaho, around 1960 to explain why she would rather be discharged to a nursing home than to a family paid to care for her, as her own family would not allow her to return to them (2). The excerpted sections are a poignant portrayal of stigma.

"My folks have shown that they don't understand insanity or mental illness, but if an authority on the subject (you, a doctor) explained to them, I believe they would understand well enough to give me some help—for a short time at least. I have tried explaining to them; but after a person once is known as mentally ill, or at least after you once get into an institution, you usually get the "crazy treatment" from people outside of here—that is, they don't pay much attention to what you say.

"My mother, for example, a while back expressed great amazement at seeing a half dozen or so [state hospital] patients sitting outside. She said she thought it was simply wonderful that those patients could be outside like that. I tried to explain to her that it wasn't remarkable, and that probably most of the patients could go outside, but that they were so in the habit of sitting inside that they just kept on doing it. Many people still have the very false idea that insanity or mental illness causes a person to be continually falling into fits or foaming at the mouth like a mad dog, or if not that bad, at least they think that insanity or mental illness causes a person to be 'a total zero,' 'a human vegetable,' or 'a complete blank.'…

"I also tried to explain to my mother that there are many people who are living outside of institutions who are mentally ill.…The way things are now, whether a patient gets out of a mental institution or not depends more on other people than on the person committed. Patients in poor condition can leave if some of their folks will take them, but patients whose folks won't help them really have to struggle to get out of here. I don't know what you think of this idea, but when I first saw that my folks didn't understand, I began to think that in order to doctor a mentally ill person successfully, you need to doctor several people who are going to help the mentally ill person, also."

Hopelessness

All we know about the author of these excerpts (3) is that he was a patient in "one of America's oldest and most respected mental hospitals." It gives one pause to consider what the environment must have been like in less-well-functioning mental hospitals of the 1950s. The letter was sent to the editor of Mental Hospitals by Mike Gorman (7), a well-known journalist of the era, best remembered for his book Every Other Bed (4), and it was published in the journal's Editor's Notebook in 1961.

"Psychiatry is mediocre or poor because the doctors are overburdened. Rehabilitation and research hardly manage to crawl at snail's pace. Room and board and diversions have improved but the alleviation of human misery, particularly of mind, heart, and spirit, shows no appreciable gains. Daily environment and routine after a year causes each day to seem the same, regardless of any diversions. Time seems to stand still, drag interminably, or take flight. Either way, it causes a feeling of irretrievable loss. One realizes he is aging, and the older he becomes while in the institution the more difficult, if not impossible, it will be if he is fortunate enough to obtain release, to secure a livelihood, and to adjust to the rapidly changing times of a critical era in our country's history. Many patients have to stay in a mental hospital for the remainder of their lives because they are outcasts, rejected, poor, aged, forsaken and forgotten, and without any means or kin whatever.

"One sees an elderly patient drop dead upon the floor amid the stench and din of a roach-ridden ward, or die gradually after weeks, months, or years of debilitating ailments, and one can't help asking himself, 'Will that be me?' In the dead or dying patient, he sees himself after the passage of several years or decades….

"I am ugly, of meager education, poor voice, no home, wife, or family, rejected by kin, have little money, no livelihood, no freedom and independence, no normal life. I am nothing, except in the eyes of God. I must make do with what I have—an able mind and the knowledge of suffering. What I can do to help others and bring happiness I do, and I consider myself rich.

"I can see that my bleak plight here is rendering my efforts futile. Daily my lot becomes more lonely and desperate. I can only hope my suffering will not be in vain—but will mean courage, solace, help, and hope for others. The bitter cry of anguish you hear is not mine alone, but that of all who are stranded and abandoned."

Abandonment

Here a son writes a letter (4) to the physician-manager of the Veterans Administration Hospital in Canandaigua, New York, about his father, who had been a patient there for well over three decades. The father had been essentially abandoned by the family, largely at the suggestion of the "doctor in charge."

"I wonder if you would please do me a very big favor and see that my dad gets the letter that I have enclosed herein. It is the first letter that I have ever wrote my dad and no doubt the first one from the family in a number of years.

"I was only three years old when he was put in the hospital about 34 years ago and when I was old enough to see him he never seemed to want anything to do with the family. Then a few years back the doctor in charge told us it would be better if we didn't see my dad in person anymore as it would upset him so much after we left him. We then stopped coming to see him anymore and I thought he would never be any better and gave up all hope until last week when I heard he had really changed for the better so I went right over to see him.

"They told me over there that for years he never would talk to anyone, that he would spend all his time by himself, that he wouldn't even accept a cigarette from anyone. So last Thursday I brought him over a carton of cigarettes and after I talked to him a while he did accept the cigarettes. The nurse in the ward at the time said that was the first time he had smiled."

[The writer told about taking his father for a ride, for the first time, on the Sunday before he wrote this letter. The writer also recounted how they went to his sister's home for dinner and how much pleasure his dad took in the sister's baby girl, the family pictures, the meal, and the dog. His father, silent for so many years, talked and reminisced and "had one of the happiest days in a very long time."]

"Sir, I know you people are very busy over there and that what I am writing is of no interest to you, but I am so happy that God has brought Dad and myself together again after all these years that I had to write you and thank all of you for the help you have given him.

"I know he is a long way from perfect yet but I believe if we show that we still care for him and that we love him we can give him some happiness for the few remaining years of his life.

"That is why I'm asking for your help. My dad believes that anything we give him will be taken from him, such as the carton of cigarettes we gave him. He said he never seen them after we left. I know that you cannot give him all them cigarettes, and that for years he wouldn't accept anything from no one but he seems to distrust everyone over there, like he said if I wrote him he would never get our letter and that if he wrote they wouldn't mail his letter. I know that isn't true but maybe if someone would give him my letter and tell him it wasn't going to be taken from him, and if someone could try and get him to write me a letter he would learn to have trust in people again.

"Sir, again I want to thank you and please try and understand that after all these years I still might know my father."

Family burden

Bob F was hospitalized on a 186-bed neuropsychiatric service of a Veterans Administration Hospital in Virginia. He was 45 years old, was married and had eight children, and was experiencing "a great deal of anxiety, coupled with excessive drinking, resulting in an over-all breakdown in functioning." He remained hospitalized for three months.

These excerpts come from letters written by his wife to two hospital social workers. Longer excerpts were published as part of an article the social workers wrote to illustrate working with families through correspondence (5). Because patients often came from some distance away, like Mr. F, family members were not readily available for interviews and sometimes sought help through letters. In Mr. F's case, the authors corresponded with his wife to obtain his social history, maintain a supportive relationship with her, and help her understand her husband's illness and solve discharge problems. The letters excerpted here were written by Mrs. F some time after her husband's discharge, as problems continued.

"I'm so shaky, I'm sick. It's just like before," Mrs. F wrote. "His walking out on me, his feelings of persecution, his belief that he's all right and something is wrong with me—even his saying he loves me over and over in the midst of conflict going on inside him. I feel like I should do something. Are there any papers you could send me to sign so you could pick him up if he gets worse and doesn't come there on his own? Or do I just wait and hope?…

"He wants very much to move us to Central City [where Mr. F had moved, hoping to find a permanent job], but when I try to make cautious suggestions and discuss and plan about it, he gets upset and says I don't want to move. Actually we barely exist from week to week and it will take thought and planning…."

In another letter, Mrs. F wrote, "I got a money order and the enclosed note from Bob. It was a great relief, and, as usual, I'm optimistic again and hopeful that he will seek help somewhere…. One thing I'm sure of—we're both going to need a lot of help and it's going to take a long time to straighten the relationship out.… Somehow I'm sure his feelings for me and the children are the same as always—and that he's suffering about the state of things even more than I am….

In her next letter, Mrs. F said that the letters from the social workers made her "less alone and less uncertain about the right and wrong in my efforts with Bob…. When I remember how much I needed and wanted him with me then and how upset and nervous it made me to hear and see him, I know how impossible it would be for me to come to Central City as things stand. As I told Dr. M., as much as I care for Bob, it was such a relief to have only my own problems to cope with and not have the added burden of his. I have learned painfully and unwillingly, during the past two years, that I can if necessary live without him and build a constructive life for myself and the children. I don't however, prefer it this way….

"About being more worried about him when we're together or when we're apart, I think I've answered that…. I just feel the children are much better off under the circumstances, with just me—as much as they need both of us. I've wondered, even while thinking of moving there, if having us would actually make him any happier."

Community reintegration

Barbara Bachmann (6) wrote "Re-entering the Community: A Former Patient's View" after she had been discharged from the 30-bed psychiatric division of Yale-New Haven Hospital. She was a group leader for a reentry project designed to help more recently discharged patients identify and cope with problems confronting them on return to the community. Here are excerpts from her article.

"When you leave the hospital after a bout with mental illness, you face problems that would be difficult for a healthy person to cope with, let alone someone who has emerged from a psychiatric ward. You can't just go back out and resume a normal life. Everything is changed, including yourself.

"Most likely you didn't wind up in the hospital overnight. Your entry was probably preceded by a period of deteriorating personal relationships, decreased effectiveness at work, and unwise personal or social commitments to which you are still obligated. Far from being able to start over with a clean slate, you have to try to reconstruct yourself and at the same time cope with the results of your previous folly.

"Some major decisions can be postponed, in the hope that later on you will be better equipped to handle them. But other decisions that ordinarily might follow months or years of deliberation must be made in a hurry at a time when you can barely focus attention on them. You must decide whether to go back to your family or leave them, whether to resume your job and responsibilities or admit defeat and give them up, whether to attempt to continue school or not, and where and with whom to live. Such decisions seem insignificant when what you really want to know is, Who am I? What happened? Where am I? Will I ever be a person again?…

"Going into the hospital in the first place was an acknowledgment of your inability to be a functional human being: your intelligence, your perceptions, your judgment, and your discrimination were not to be relied upon. You suspected that there was something so fundamentally wrong with you that you couldn't hope to be a real human being, ever. The fact that no one in the hospital would ever give out a clue as to what might be wrong has reinforced your most discouraging suspicions. And yet now you are told that there is nothing preventing you from going out and leading a normal, productive life except your own lack of guts. Your uncertainty and fears are treated as though they represent a willful refusal to do something that you know you can and should do.

"You can understand, even at the time, that the shift in emphasis from the sympathetic "Yes, it really is hell and we know how you're suffering and we want to help you" to "Now get up off your ass and get out there and stop pretending to be sick" is an essential part of the process of getting you off down the road. Nevertheless, it adds another moral indictment to those that society has already leveled at you, and it removes the comfort and sympathy of the hospital community at a time when you feel you could surely use both….

"During the re-entry period, fellow ex-patients are the only people you know who are capable of understanding your moods, doubts, and fears, and whom you can rely on to be tolerant of your social shortcomings. But you have been assured that you must divorce yourself from them and make new friends, if you are to continue to progress. So you feel guilty about clinging to them, but how else are you to fill up this vacuum? Their solace, advice, companionship, encouragement, and evaluation are of great benefit to you….

"Everything requires such an effort, and you are tired, discouraged, and foggy from your medication. Or at least you hope it is the medication. The effort to try to appear bright and normal with new people is the most exacting task of all, so you give up on that. You find your job tedious and unrewarding and you come home and fall into bed as soon as work is over and then, if you are lucky enough to sleep all night, you get up and it is time to go to your stupid job again. You are too tired to do much and too numb to think of anything to do, even though you are bored beyond endurance. The tendency is to exaggerate your craziness and thereby make something happen. But you can wind up in trouble again that way….

"It is difficult to adjust your expectations. You don't know whether to gauge your present performance by your past performance, or by the performance of others. You are preoccupied with the same old unanswerable questions: What is this mental illness? How much of me is it, or vice versa? Must I settle for just being able to endure, and force myself to drag on through a miserable existence indefinitely?…

"Then gradually, from the indefinable, threatening situation that is your mental illness, which seems to have engulfed your whole life, you disentangle bits of yourself and discover, to your surprise, that they are still intact and functional and even approvable. People were right in telling you that you still had capabilities and competence. But each such salvage operation is fraught with the peril that you may discover a new loss, instead of an old capability, or uncover some unalterable major defect in yourself, or find answers to your questions that you can't bear to know….

"In the hospital we got some inkling of how satisfying it was to commit ourselves to the community effort to help one another get out. But now that we are out, nobody seems to need us. No one will move over and let us into the circle. We are tired of being helped, patronized, patted on the head, watched anxiously, and given pep talks. We don't want to just exist. We want to belong and to do something that matters."

Conclusions

These accounts are simultaneously old and fresh. Although large, overcrowded state hospitals are mostly in our past, what about jails, prisons, and shelters? Stigma has yet to disappear; some say it has yet to even dissipate. The despondency wrought by chronic mental illness and its attendant chronic care remains a great challenge.

While fewer and fewer people are abandoned to die in state hospitals, more and more are abandoned to try to survive on the streets. Family burden, and the guilt and ambivalence it leaves in its wake, is more of an issue now than it was in the era of large institutions. And the obstacles of true community reintegration, rather than just community placement, are emerging as one of public-sector psychiatry's greatest challenges.

Dr. Geller is professor of psychiatry and director of public-sector psychiatry at the University of Massachusetts Medical School and its Center for Mental Health Services Research. He is also editor of this column. Dr. Geller's address is Department of Psychiatry, 55 Lake Avenue North, University of Massachusetts Medical School, Worcester, Massachusetts 01655 (e-mail, [email protected]).