I first wrote this story of my mother back in 2000, six years after her death. I share it today as my first entry on this important blog, in the hope that people will see that there is another way. In future entries I want to share with you why I don’t believe in mental illness and the use of psychotropic medications, and how I believe people who are experiencing emotional distress can get well, stay well, and live the lives they want to live.
What is unusual about this woman, my mother that makes me want to share her story with others? Raised on a farm in the rolling hills of Pennsylvania, Kate never quite fit the typical image of a quiet, proper and demure Pennsylvania Dutch girl. Unlike her two sisters, she was outspoken, assertive and mischievous, qualities not admired in a young woman at that time. She questioned why they had to sweep the sidewalk when the rain would clear it anyway, and why they had to keep the house so clean.
After completing college with a degree in nutrition, having a brief career as a county extension agent, marrying and having five children (I am the middle child), Kate spent 8 years of her life, from the ages of 37 to age 45, in a state mental institution. She was diagnosed with severe and incurable manic depression.
Before the hospitalization, our family life was nearly idyllic. Kate had left behind her career to spend full time engaging her family in a variety of activities from gardening and raising chickens to sewing and cooking. She supported and encouraged activity, creativity and individuality. I will never forget the homemade french fries and fried dough that warmed us on cold winter days. Even though her hospitalization began when I was eight years old, she left with me a rich array of skills I have used all my life and a love for the natural world which has sustained me through many hard times.
Sometimes when we went to visit, she was in a very severe depression, thin and unkempt. She pulled her hair back severely and always wore the same clothes. She hardly knew we were there. She would repeat over and over words we didn’t understand while she walked in circles, wringing her hands and crying. At other times she was very exuberant, laughing and talking loudly, behaving in a manner that was bizarre and embarrassing.
Her doctors told us to forget about her, that she was incurably insane and would never get well. We (her five children) went to visit her every Saturday, even after the doctors told us not to come anymore.
When she had her deep depression, she had no support. I am not sure anyone knew how to give her the kind of support she desperately needed. Close family members lived far away. My father was away for weeks at a time working on the railroad. We lived in a rural setting and the task of caring alone for five small children may have overwhelmed her. She had no opportunity to get together with other women.
I often wonder how she might have responded when that first depression set in, if, instead of being taken off to the hospital and isolated from the people who loved her and the world she knew, she had been surrounded with loving caring friends and family members. They could have taken over her responsibilities for a while; perhaps someone could have even taken her on a vacation. Suppose they had just sat with her, listened to her, and held her while she cried. Instead she was separated from the few people she did have in her life. In the hospital, no efforts were made to encourage patients to support each other. And there was little staff available to give support to the multitudes of patients.
As a child I always thought it was my fault my mother got sick. I didn’t know what I had done to cause her illness but I thought that if I said the right thing to her she would get well and stay well. The only trouble was, whenever I was alone with her I didn’t know the words to say.
The atmosphere in the hospital was abominable, as state psychiatric institutions were back then, and many still are. It was crowded, dark and smelly. She slept in a large room which she shared with forty other women. There was only a small nightstand between the beds for personal belongings. No privacy. No rest. No peace. Dealing with forty others who were having as hard a time as she was. She recalled that the food was horrid, and being the wonderful cook she was, she would have known. She had very limited access to doctors and there was little staff to meet the needs of all those patients. Not much of a prescription for recovery. No one was expected to get well. It was a holding tank, a place where people were managed, not cured or helped to recover.
People diagnosed with manic depression in those days (the late 1940’s and early 50’s), before the advent of most psychiatric medications (she was given some Miltown as I recall) and the focus on psychotherapy and recovery, people with symptoms as severe as the ones she experienced, were expected to live out their lives and die alone in a back ward, forgotten by family and friends. But not Kate. After eight years of severe, recurring psychotic manic and depressive episodes, Kate got well. And she stayed well until her death at the age of 82, 37 years later.
What does her story have to tell us and teach us, 60 years later?
No one really knows why those awful mood swings stopped. We just know they did. It certainly wasn’t the 150 forced electroshock treatments that took away all her memories of her children in the years before she was hospitalized. They gave up on those fairly early in her stay. Hospital staff noticed her moods weren’t vacillating wildly anymore. In fact, she was helping to take care of the other patients.
She and I spent many hours talking about why she got well, about what made the difference. In fact, she was included in, and the inspiration for, both of my studies: my study of how people with depression and manic depression get by on a day to day basis, and my study of how people with severe mood instability get well, stay well and regain control over their lives. These studies gave me the information I needed to write my books, The Depression Workbook: A Guide to Living with Depression and Manic Depression and Living Without Depression and Manic Depression: A Guide to Maintaining Mood Stability.
As I noted earlier, prior to her first episode, her life was stressful and she had little support. Through most of her hospitalization she had little support. But toward the end of her hospitalization, several things changed.
There was a volunteer at the hospital and a staff member who began to take a special interest in her. They listened to her for hours and hours. She was not used to sharing. She interrupted her monologue with apologies for talking too much. But these two dedicated supporters encouraged her to continue, literally for hours on end. She says she had never felt heard before.
In an interlude between episodes at the hospital, she started what may have been the first support group for mental patients ever begun by a psychiatric patient. It was called Mental Health Fellowship. She began the group with the help of a very fine psychiatrist who took a special interest in her case. I think that is what may have gotten her discharged. The hospital staff weren’t comfortable with the patients talking to each other. Even after she was discharged from the hospital, she went back regularly to attend meetings of the support group and to visit patients who had become as close as family through the years.
There was another factor that we can’t really assess, but that needs to be mentioned. One of the nurses started clandestinely giving her a high dosage multi-vitamin. Perhaps chemicals in her body that had gone awry somehow fixed themselves. Who will ever know?
Perhaps it was her own strong will and determination that made her well. We know it wasn’t medications. After the Miltown, they didn’t give her any. Perhaps that saved what wasn’t fried out of her brain by the shock treatments. And no one was talking about self-help.
When she got out of the hospital, she faced some serious challenges. Some so immense that they would have sent most of our moods wildly out of control or scurrying back to the safety of a bleak hospital situation. She seemed to have a sense of the importance of support. This was in 1955, before anyone was really thinking about support for people with mental health issues. But somehow my mother knew how important it was to her ongoing wellness.
She came out of the hospital wanting to be a mom again. But in the intervening years, we had all grown up, just two of my brothers were left in high school, we were not used to having a mother around and were very independent. My heart sinks when I think of the inadvertent mistreatment and lack of understanding she got from me and my siblings that made her transition back into the family much more difficult. Imagine trying to re-enter a household where you had left a group of children and came back to almost grown adolescents.
She struggled and regained her space in the family with little help from us. Adolescence is not a good time to expect much understanding or empathy. To our credit, as we moved into adulthood, we became much more supportive and an ongoing source of pleasure for her. When she died at the age of 82, she left behind her role as matriarch of a huge family including her 5 children, 24 grandchildren and 16 great-grandchildren who adored her.
Recovering from a devastating illness, she was faced with the stigma that is the constant companion of anyone who has been diagnosed with a psychiatric illness or spent time in a mental institution. She took many educational courses as she went through the heart breaking process of being refused job after job.
Finally, someone took a chance. They needed a school lunch manager at a school in New Haven, CT – a junior high and high school in a section of the city that had the highest rates of crime and delinquency. Under her guidance, the staff prepared healthy meals that appealed to the kids, causing a rapid rise in the number of students in the hot lunch program. She took the time to know each student by name, to understand their circumstances and to prepare foods that were ethnically and nutritiously appropriate to their needs. Some of the mothering time she lost with us, she bestowed on those very needy kids.
And then she began to systematically connect with people in the community. She met people through her work as a dietician, in her church, in the local grange and through a variety of volunteer activities. Sometimes the stigma created by her long hospitalization caused her to be ostracized and rejected. People made rude comments that hurt her to the core. I remember hearing her crying herself to sleep at night. But she pressed on.
There were several key ways she built her support network. She kept in touch with people. Not overwhelmingly, by constantly bothering them, but by a quick phone call to check in, dropping by with a loaf of freshly baked bread, running an errand for someone or sending a card. Before long people began to forget that this vivacious woman had ever been in a mental hospital. She was always there for others, and then when she needed support it was always there for her. If she liked someone (she almost always did), she made sure they stayed in her life by keeping in touch and making plans to spend time together. Because of this her life was very rich. I don’t know if she developed this support system intentionally, but she certainly did it right. Her ongoing wellness was dependent on her strong connection with others, so that became the focus of her life. It not only kept her well, but as it evolved, her life became richer and richer.
She knew how to keep her support system strong. And that was by being MUTUALLY supportive. In fact she gave much more to others than she ever needed, wanted or expected in return. In early November she began sending out Christmas cards to all the people on her extensive list. Sometimes I got several because she found a new one that she thought I would enjoy. If she was picking blueberries, she picked extras and deliver them to people she cared about. She was always volunteering to take friends shopping or out for lunch. When she worked at the church rummage sale (which she did until the day before her stroke), she was always on the look-out for something one of her friends or family members could use. She phoned and wrote regularly to keep in touch with others. She was always available to listen when anyone needed to be heard.
By giving support to others when she could, she got it for herself when she desperately needed it. The things she did for others became second nature to her. She used her support to keep herself healthy following her discharge from the hospital. When she was having a hard time she called up one of the many people she knew she could trust and shared with them her innermost feelings. They would often spend time with her, supporting her until she was ready to resume her normal activities. Her own brand of mutual support enriched her life.
Often when we think of someone who has psychosis as severe as my mother’s and who was hospitalized for a long time, we might expect that when they got out of the hospital, their life would be limited and isolated. Not true in her case. Because she was so supportive of so many people, others loved and supported her.
In the spring of 1994, at the age of 82, she had a major stroke which left her unable to speak or move her right side. This time her hospitalization was different. She was a patient in a magnificent facility associated with the retirement community where she lived with my father. She was in a beautifully decorated private room and received loving attention from a staff which catered to the needs of the elderly.
The hospital staff, however, was not prepared for the overwhelming support she received. As soon as her massive community of support heard what had happened, they started to come. A continuing procession. Family members and friends filled her room around the clock, wanting to be sure she didn’t feel alone for even one minute. Some just peeked in and let her know they were there. But most stayed, sometimes all day and over night. The facility really didn’t have rules to deal with a situation like this, so they just let it happen. Literally hundreds of people came along with stacks of cards and so many flowers that we had to find other people to give them to, as the room was full.
When she died a month later, the two memorial services were packed to overflowing, a testimony to a woman who survived a horrible time and who received all the support she needed for herself because she gave so much to others. She died surrounded by her loved ones. The night before she died, my brother, an organist, played her favorite hymns to take her through the night. My sister-in-law played the keyboard and we sang songs that she remembered from long ago. What a marvelous send-off!
The service at the retirement home was packed with hundreds of people. The flowers were magnificent, a final tribute designed by a very talented granddaughter.
At the second service, intended for family and friends, family members read eulogies and great-grandchildren again sang her favorite hymns. Even the standing room was filled. My brother and Kate’s granddaughter played the organ, as she would have wanted.
The graveside service was for family only. It was a beautiful Saturday morning in spring. As we gathered to say good-bye, a beautiful hawk hovered in the sky. When the service was over the hawk vanished into thin air, just as it had come.
Because of Kate, I knew that my diagnosis of manic depression was not the end of the road, that I would, like her, get well, and stay well.
Kate’s story, and the story of others who have walked in her shoes, needs to be told again and again. Those of us with psychiatric illnesses need to know that there are many, many people who, like Kate, get well, stay well and lead rich, rewarding and valuable lives.