Living with Schizophrenia: A Sister’s Perspective

Aaron* was born in 1950 and was diagnosed with paranoid schizophrenia at age 17. Everyone thought that Aaron was a difficult child. He had tantrums and rages from a young age, but he seemed very intelligent although he had trouble succeeding in school. Aaron had seen many psychiatrists and psychologists during his teen years and was in and out of hospitals and group homes for the mentally ill as a young adult. Nothing seemed to help him. He had terrible side effects from his medications, became a chain smoker, gained lots of weight, became violent at times and continued to suffer from paranoid delusions. He died from unknown causes at age 36 after walking out of the mental health unit of a metropolitan hospital. He was reported as a Missing Person by the family, but his body was not identified until several months later. Evidently, he died on a subway train soon after leaving the hospital, and his body was sent to the city morgue. Aaron had “disappeared” many times before and his mother and sister expected that he would eventually contact them but when the identification of the body was made, they were traumatized by the manner of his death.

Aaron’s immediate family consisted of his father, mother, and younger sister, Sharon. His father was a victim of the Holocaust, had survived concentration camps in Poland and was a witness at war crime trials in Germany. He came to this country after the war with one brother, married and had the two children. He was not a handsome man and had low self-esteem due to his appearance, but had bright blue eyes, a fast wit, resiliency and a burning ambition to get ahead in this new country that he loved. At some point in middle age, the Father began to see a psychiatrist because of his bipolar behavior and extreme mood swings. He deteriorated with severe depression during Aaron’s early adolescence due to the death of his own brother from leukemia. He would sit crying endlessly rocking back and forth in a chair. No one in the family could understand this behavior, nor were their attempts to help him successful. One day he disappeared and his body was found hanging in a public garage an apparent suicide. During his life in the US he became a very successful, business owner and was well-regarded in his community.

Aaron’s mother was a difficult individual whose married life was fraught with problems that couldn’t be solved and only got worse. In her early years she thought she’d become a career woman especially given her employment during WW II, but eventually she married. In the early years of her marriage her problems resulted from her husband’s bi-polar episodes and her son’s unmanageable behavior. Her life was made terribly worse when her husband committed suicide. She tried to do all that she could for her son and daughter and even took them on a European vacation and moved to a different neighborhood. When her son was diagnosed with paranoid schizophrenia her life was never the same. Although left with financial resources at the time of her husband’s death, the money declined through the years due to the cost of repeated doctors and hospitalizations for her son, no employment by herself and her daughter, and her losses in the stock market. Playing the market became her passion and Sharon thinks that it was one of the few things in mother’s life that made her feel good. For many years after her husband and son died, she lived a simple life with her daughter in an urban apartment surviving only on her social security. She was estranged from her extended family and died when she was in her 80’s.

Sharon felt that she had a wonderful childhood. She admits to having been a spoiled child and remembers that her brother was always difficult. Then her father died. She was told he had a heart attack, but she always suspected that there was a secret about the death that was not shared with her. When her brother’s illness took hold of the family a few years after her father’s death, her life became isolated and fearful. She, her mother and brother moved from their private home near her father’s business and relocated to an apartment in a different, middle-class part of New York City. Everyone in the family thought that this move would give them a fresh start. Sharon believes she suffered a nervous breakdown when she was in her early 20’s and as a result for approximately 30 years refused to leave the apartment she shared with her mother and her brother. There is no question that she was genetically and environmentally susceptible to having significant mental health illness. When her mother died, she faced the reality that if she didn’t start to function independently, she would have no money, couldn’t keep the apartment, and would likely become part of the horrific mental health system that she experienced during her brother’s multiple institutionalizations. Today she works in the health field, is independent and travels on public transportation. While she truly did not leave her apartment for more than 30 years, after her mother’s death she regained the strength and courage needed to get help and make a life for herself and live in the world amongst people.

I am several years older than Sharon and have strong and vivid memories of this family’s tortured life. I remember my cousin, Aaron, in early childhood having uncontrollable tantrums and throwing his shoes out the window of the apartment or down the toilet. When he attended school, I got nightly phone calls and was asked to “help” him with his homework which really meant giving my aunt the answers to the homework questions. I remember my cousin’s terrifying behavior when he, his mother, and sister visited my home many times for overnight visits and my normally non-violent father going after him with a belt to “teach him a lesson.” Aaron often bullied his mother, but my father could not tolerate this behavior when it occurred in our home and was directed at my mother. Through the years there were also weekend visits to my aunt, uncle and cousins, but the visits were rarely pleasant.

Aaron and Sharon’s mother was my mother’s sister and while there had been strong family ties and support in the early years of the family, for many reasons there was little personal contact with them after Aaron’s hospitalizations. When I received a phone call that my aunt had died, I felt responsible and truly concerned about my cousin, Sharon. Through the many years of the family estrangement I suspected that my cousin was a recluse rather than believe the “stories” my aunt told about her just being too busy to talk on the phone or being at work. The story of her very sad life and the remarkable path to her recovery is being written about in a book that will hopefully inspire others.

From Sharon – Aaron’s Sister

My brother’s illness, schizophrenia, deeply affected my family and disrupted our lives in a most profound way. It contributed to my struggle with depression and agoraphobia, because I could not cope with such a complex illness that began when I was a young teenager. It peaked with a violent confrontation with my mother and me one school day morning when I was fifteen. I awoke to loud noises. My brother was screaming at my mother fearing that she was a CIA agent and out to get him. My mother was attacked with an appliance and I was knocked against the wall having been thrown by my hair several times. My brother ran out into the street in his pajamas and he was apprehended by the police and brought to a hospital.

My brother was difficult throughout my childhood, but this was something very different from anything before. This was the first “outbreak” of such intensity that left my mother and I traumatized for a long time. This happened when my brother was 17, although there were other incidents for many years that made our lives so difficult.

My life began to change starting at the tender age of eight when I experienced the loss of my grandmother and shortly thereafter the loss of my uncle from leukemia. It was all hard to process as was the illness of my Dad’s sudden depression, and at times mania. This culminated in my father’s suicide when my brother was 12 and I was 11. To protect us we were never told about the true cause of his death and were told he had a heart attack.

After experiencing the deaths of loved ones, I buried my pain that I could not possibly deal with. My mother felt guilty because my brother was born with the umbilical cord wrapped around his neck and she thought that this contributed to his illness. My mother reacted differently than I did to my brother’s illness. She became more caustic and I became more withdrawn after having been an outgoing person.

As a child I remember my brother was either harassing my friends verbally or he was withdrawn. My mother sought psychiatric treatment for him at an early age, but we both knew that doctors had not helped my father. It seems to me that doctors were always good at giving advice but had not experienced the reality of living our lives. Their advice never helped my father or my brother. My brother was seen by private psychiatrists, hospitalized in private institutions for short periods of time, and then put in a state psychiatric hospital for much longer. His illness was very difficult to treat and the right medication was never found. This was in the late 1960’s and the pain and anxiety due to his illness was never ending. After high school I did not get a job, go to college, or have friends. For many years I thought that my job was to try to bring some happiness to my mother. She bought me a car and I would drive her to visit my brother in the hospital, or many times we’d go on long rides without a destination—just to get away.

Years ago, mental illness was not discussed openly as it is today and the medications available had terrible side effects that I saw with my brother. My brother died at the age of 36 after years of hospitalization that took its toll on his physical health and did not improve his mental health problems. I retreated within myself and isolated myself for many, many years. When my mother tried to coax me to go out of the apartment, I told her that I would commit suicide if she forced me.

Depression, for those who do not understand it, is the most painful and self-loathing illness imaginable. I never had faith in the mental health system and refused to see any kind of doctor or seek assistance during those many years indoors. After the death of my mother I had to rebuild my life and learn to take care of myself. I finally sought psychological treatment. Today I am independent and work in the health care field and lead a healthy life. Medication has improved my life greatly as has therapy and the love and support of extended family. I will be eternally grateful for their nonjudgmental support and soothing words.

I finally began a new life.

*Author’s Note: The names of the brother and sister have been changed at the request of the sister. All information is true and accurate based on my recollections and those of the sister.

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