Susan Weinreich is an award-winning artist whose work has won acclaim around the world. For close to 40 years she endured a heroic journey through the darkness of schizophrenia. Her story has become an inspiration to many and she has become an advocate for people with mental illness. Mental Health News is deeply grateful to Susan for sitting down with us and candidly sharing her incredible story with our readers.
Q: Tell us about your experience with schizophrenia.
A: I was diagnosed with paranoid schizophrenia at the age of 19. However, I did not learn of my diagnosis until 6 years later. The doctor who first treated me in the early 1970’s when I was at college in Rhode Island believed that a patient’s diagnosis was not to be disclosed or discussed with them. Back then, schizophrenia was a very taboo word to use, and had a “death sentence” connotation attached to it. I believe my doctor felt it was not necessary to tell me, although I knew there was something killing me — emotionally and psychically — and that I was dying inside. He did not understand what was really happening to me, although I knew there was something dreadfully wrong.
I received a couple of diagnoses after that – all related to schizophrenia – from different doctors in the years that followed. One was chronic undifferentiated schizophrenia and one was schizoaffective schizophrenia. I experienced different degrees of the illness over time. When I was diagnosed with chronic undifferentiated schizophrenia, I was pretty far gone and paranoid. When I was diagnosed with schizoaffective schizophrenia, I was experiencing a mood component that had entered into the picture. As the years passed, I progressed along a continuum or spectrum of my illness and recovery. Years later, I found myself dealing with major depression, which I feel was a result of burning out from all the stress I was under during the years that I was psychotic and trying to cope with that. It was quite a journey from psychoses to neurosis and then arriving at some semblance of normality that I have today.
Q: Once you did learn of your diagnosis, did that change how you viewed your illness, the way you felt inside, or how you viewed yourself as a person?
A: A part of me knew that who I was as a person, was more than simply a label, a diagnosis, or a clinical picture. It had to do more with my spirit and my soul, in spite of the fact that I was living in such a darkened place that my illness created in me.
Q: Do feel that you suffered a great deal more than necessary during the early years of your treatment?
A: Absolutely. My first experience in treatment during my college years did not provide me with what I would now call early intervention, even though I was under the care of a psychiatrist. During those early years I decompensated very rapidly because I was not receiving the kind of care I believe I needed at the time. I was treated with many of the older phenothiazine medications that were available back then and was gradually given newer medications as they were developed.
Q: Take us back to your earliest recollections that something just wasn’t right with the way you felt as a child.
A: As a child, I grew up in a home where there was very little communication. There was love, but the typical family interactions you might expect to be present in a family were not present in mine. I felt alone at a very early age, but had an almost innate interest and talent in art. My father was an architect, and my mother sculpted when I was very young and I used to model for her. At the age of eight, I built a little art studio for myself in our basement. It was a dark unfinished basement and unfortunately not a very cheerful place. I would go there after school and on weekends. When I wasn’t in the basement with my art, I would walk in the woods and felt at home being around nature. I was pretty much a loner, and my art was the only way I could express myself. I was encouraged by my parents and my teachers to pursue my artwork, in spite of the fact that I did poorly in school. I remember having very few friends. When I did make a friend it would not last. Other kids thought I was “snobby” but I just didn’t know how to relate to the other kids. I had no social skills and spent my days with my artwork in that dark basement when the other kids were out playing. My childhood was a very dark time for me, and one of the things I remember was being in class one day and writing on my desk “god – please help me.”
At around 17 years old, a lot of my dark feelings were coming out in my artwork. I did not want anyone to see what I was painting so I hid my work (even from my family) and kept it in the closet hidden away. I soon went off to college at the Rhode Island School of Design which is a very good school. I was totally unprepared to be out on my own in the world and I started to really fall apart. I became totally withdrawn and lost and falling further into darkness and dark thoughts. I was really hurting and scared. I ended up in the school infirmary and spoke with a counselor on the staff that referred me to my first psychiatrist that I spoke of earlier. The next three years I really took a nosedive and I was kicked out of school – not because I did anything wrong – but because I was ill. This is something that I hope would never happen today.
I was so ill and didn’t know enough to do anything about it. My parents at the time were going through a divorce which kept me even further from their intervening on my behalf. The entire family became fragmented, and I lost touch with my father who, because of the divorce, totally dropped out of all family contact. I have only just reconnected with him last year after a 35-year absence. I later learned that he eventually suffered from a severe form of PTSD emanating from his past service in World War II. I also learned that schizophrenia had been present on my father’s side of the family which was hidden from me, and he had a lot of negative feelings about that as it related to the difficulties I was going through.
During college, I had become so ill that I had to be hospitalized three times (once committed). I didn’t tell my family because I didn’t want them to know what was going on and because I had so much self-loathing, fear, and paranoia.
Q: Was there a pivotal moment during all this that was a turning point for you at this time?
A: Yes. None of the treatments and hospitalizations I received during my time in Rhode Island was really helping me. It wasn’t until my psychiatrist who was treating me called my mother saying that he wanted to hospitalize me at McLean Hospital in Massachusetts for three years and needed to find out what type of insurance the family had. My mother got in her car, drove up to Providence, threw me into the car and drove me back home to Connecticut. All I had was the shirt on my back which had cigarette burns and dirt all over it, my jeans I was wearing which I had painted all over it, and all my art supplies which she tossed into the trunk of her car.
This was upsetting to me because even though my doctor wasn’t helping me get well, he was my only lifeline at the time. She tore me away from him and brought me to Four Winds Hospital in Katonah, New York, which was closer to my childhood home in Stamford, Connecticut.
Q: What was that like?
A: I remember driving in the car with my mother up the road leading to the main office at Four Winds and thinking that this is too beautiful and surrounded by nature to be a hospital. I was used to brick buildings with bars on the windows. I remember sitting curled up in the corner of Dr. Samuel Klagsbrun’s office, the Executive Medical Director of the hospital. It was early January of 1979 and patients back then had their own private rooms. I remember lying on my bed for months watching the snowy scene outside my window changing to spring and then to summer. There was this one female patient who would come into my room every night, sit by my bed, and read poetry to me. I remember letting her do this, while not letting anyone else get near me at that time. Then, one day, I remember getting up from my bed and hugging her. From then on, she walked me into the day room where they had group therapy and I joined the other patients for the first time. When the spring came, I felt the first lifting of my psychosis in what may have been five to six years. Then there were four or five more hospitalizations at Four Winds after that.
Back to your question about turning points in my illness, I remember when Sam (Dr. Klagsbrun) first told me my diagnosis. It was the first time I had ever heard a label or a name being attached to what was going on with me. You know what? I felt so much more relieved.
It wasn’t like “Oh my god a label,” “I don’t want this on my record.” you know? At that point I was like “Whoa – there’s a name for this thing.” And then in his next breath he told me, “And you can recover from this.”
No one had ever said that to me before or believed that recovery for me was possible. I had this relief that came over me and that was the first turning point. From then on, I continued to fight and struggle with finding the right medications that could help me along the way. I became more open to accepting the need for medications, in spite of the fact I had previously had a firm belief that I would affect my artistic creativity – which turned out to be absolutely ridiculous. There’s that whole theme of creativity and madness and the use of medications – so I struggled with that for some years.
Q: It sounds like Dr. Klagsbrun had a great impact on you and your ability to recover.
A: Yes, he did. I only saw him while I was an inpatient at Four Winds, not in outpatient treatment. As it was, I was an inpatient there for the good part of the year (four to six months at a time), and for several years in a row. Another big turning point for me was during the first year I was under Sam’s care at the hospital. He had developed a unique hospice program where people came to Four Winds in the last weeks and months of their life. These hospice patients would join the group therapy with the rest of the patients. You must understand that Sam had just started the hospital itself a year or so before I came, and having such a small number of patients in the hospital back then, was like a family of patients being cared for by the staff.
I remember being exposed to several hospice patients who were dying. It was a very powerful experience for me. Even in my delusional and my psychotic state, I used to sit by the bed of this one woman who was a hospice patient and show her pictures of paintings in an art book. When she died, there were several of us in her room – Sam was there – and we all recited Kaddish (the Jewish prayer for the dead). Even though I was still very psychotic at the time, on some very deep and profound level I realized that this whole experience represented a question for me of whether I wanted to move towards life and living or whether I was progressing towards death. Do I want to live or do I want to die?
Faced with such a reality as death is, even to somebody who is totally psychotic, it touched me on some very deep level.
It was at that moment, that I realized that I wanted to live.
From then on, I started to really try to learn, to struggle, to work through everything, and to try to make steps forward instead of backwards.
Editor’s note: The hospice program at Four Winds was during its early days and is no longer a program at the hospital.
Q: You speak so fondly of Dr. Klagsbrun as if he was a part of your family. Did there come a time that he said you were better, that you should move on, leave the hospital, and go out into the world and begin to live your life?
A: No (laughter), not really. He actually was amazing in that on some level he actually indirectly encouraged me to have a dependence on the hospital. Not that he directly encouraged this, but I think that because I was so regressed, he played the role of father, mother, and doctor. I was like an infant that needed to be coddled and nurtured. Because of the special way that he treated me, I was able to make a connection with someone, and come out of the imploded and isolated state that I was in. I believe that the nurturing way he treated me enabled me to begin to first reach out and try to strive towards life and health and let go of my illness. A part of that was to encourage this special dependence – something that had been absent from my life all the years I was growing up. In other words, the basic building blocks of trust, safety, security, and cognitive independence that all children need to achieve with their parents were never given to me as a child. Of course I am not an expert on treatment, but I believe Sam’s treatment approach with me was designed to rebuild this period of my life so that I could become the more completed person I should have achieved during my younger years.
I left Four Winds in 1982 and thought it was going to be my last time there. I was still very sick and very broken but no longer blatantly psychotic. Part of me wanted to help other people with mental illness so I did volunteer work at the hospital with a few young adults who were interested in art. Several years later, I took training and became a mental health worker. During the last year that I was at Four Winds, I started doing some public speaking about my art and my experience with my illness. I decided to put together a slide presentation of my art and I did a dialogue along side of it. I basically talked about my decent into my illness and my recovery to that point. I gave my first presentation in the living room at Four Winds. Everyone from the hospital was there including the kitchen staff, janitorial staff, the patients and all the staff and doctors. They turned the lights down and I gave this hour long presentation. When they turned the lights back on I turned to look at Sam and he was crying.
I couldn’t believe that. I was so touched.
From then on, I gave more of my slide presentations. Sam took me around to the different hospitals around the NY metropolitan area to give my presentation. I remember getting a call from Dr. Ronald Rieder who was at Columbia University College of Physicians and Surgeons at that time, who invited me to come and talk to his medical residents about my experience with mental illness. It was the 1980’s, and since then, I have given a lecture at Columbia every year. I think it was very helpful for them and certainly it was for me.
During the years that followed, I went through three to four clinical depressions each lasting between two to three years in duration. I hooked up with a therapist in New York City who basically brought me through boot camp. I saw her three times a week and since I couldn’t afford to pay her I traded my artwork for therapy. She was married to a very famous cellist who was Yo-Yo Ma’s teacher. It became twenty years of learning how to eat, walk, sleep, talk differently, change my underwear, take showers, and trying to find some kind of work. I worked as a cashier for eight years part-time. I was still very paranoid, very scared, and very fragile for many years. I think my ego had more holes in it than Swiss cheese and it was just totally shot after all I had gone through. My therapist passed away in 2001 and I went on to work with someone else.
To this day, I am thankful that I had Sam looking over my shoulder to see who was caring for me at any particular time. He had become like a grandfather to me. I still check in with him at least once a year. We are now working on a program at the University of Hartford where Sam and I will speak on a panel and I will discuss my artwork. My relationship with Sam, even though it had its boundaries, represented a unique continuity of care for me that he provided. I think that is something people with mental illness do not receive in today’s world.
Q: This was a special nurturing relationship. And how did your artwork fit into your recovery?
A: I believe that I developed the ability to problem solve through my painting. I knew all along that I could not spend my life at Four Winds in spite of my feeling a deep and profound connection to the hospital. I knew I would eventually be able to move away from it emotionally and have a life of my own.
To me, a painting is worth a thousand words. When you take someone who becomes withdrawn and isolated as a result of an illness, the ability to connect and communicate with another person becomes obstructed – certainly in schizophrenia. My artwork provided me with a means to communicate what was going on internally in me and was incredibly significant in my recovery process. I did not expect that someone could look at my painting and understand exactly what was going on inside of my head. With an illness such as mine, I was totally cut off from life and everything. My ability to somehow connect with something outside of myself was critical to my survival – whether it was Sam, as it was in the early years, a spiritual life, a rock, a tree or whatever. That connection is where the healing takes place.
Q: Over the course of your illness did you meet other people with schizophrenia? Do you think there are similarities in people with the same diagnosis or did you think everyone is unique?
A: Everyone’s different. I think it’s a very unique and individual process – both the deterioration that takes place during a person’s illness, and the rebuilding of each person into a more healthy life during the recovery process.
I think that if I had received earlier intervention I would be a lot further on both personally and professionally than I am today. I am still lacking in many areas of my life. Financially, it is very hard for me to take care of myself. I try. I do the best that I can. I lost so many years during which time I could have been gaining a skill or profession to support myself while doing my art. This has been a real tragedy for me. The other thing I lost during my illness was my entire social development. I am 54 years old and have only been able to have an intimate romantic relationship for the first time a couple of years ago and that’s been it. I think that’s an issue that there just isn’t much if any research about. There isn’t any data out there about people who are recovering from schizophrenia and about how to start dating much later in life than people usually do (laugh). It has been a frustrating experience for me and I think it’s really hard for most people with a severe mental illness.
Q: Do you think that stigma plays any part in that?
A: Absolutely. So much of dating today can be done on the internet. This is great for most people, but horrible for someone like me. That’s because I have made such a life for myself that is intertwined with my experiences and advocacy work for mental illness and recovery. As a result of that, my entire history is all over the internet, so anyone that I meet online can simply Google my name and read all about my struggle with schizophrenia. Before I even get to meet someone in person, it’s all over. You know?
Q: Yes, I understand that from my own experience all too well (laugh).
A: Even when I meet someone in person, I end up having to explain why I am flying to Montreal to give a lecture, and who am I on a panel with, and why I am doing this and “Oh. You take medication? What’s that for?” It’s very hard.
Q: If you were to give our readers a final thought about overcoming the hardships of your journey, or their mental illness, the recovery process and if recovery is truly possible, what would you say?
A: I would say that recovery is absolutely possible and absolutely worth-while. The bottom line is that people with mental illness are no different from anyone else. As human beings we all have issues in our lives – whether they’re physical illnesses, mental illnesses, disabilities of any kind – we are all struggling to just get through it, develop, grow and face our challenges.
I have met people with schizophrenia. There are people who are doing very, very well, as I am today. Does anyone really know how many people are out there that suffered from a serious mental illness and are now doing OK? That may be a number hard to figure out because most people who have gotten better do not want to talk about the dark days of their lives – it’s just too painful.
For me, since my illness was over 35 years in duration, I am not about to deny it, and not have people I love deny that it happened either. It’s very much a part of who I am and who I have become.
I believe that people can and do recover from schizophrenia. Everyone is capable of recovering to the most possible level that they are able to reach – and we don’t know what that level is.
It’s different in every individual. A lot of it, again, has to do with the type of early intervention that people receive. I think that’s really crucial. Hopefully people won’t have to go through 35-40 years of recovery like I have. With better continuity of care and some of the newer medications that are out there I believe that people do and can recover much faster. I have friends that have. On the other hand, I don’t regret the path I have taken. I think that my recovery is a continuous effort and not unlike anyone else’s growth throughout this life.
Q: Why do you think people are so frightened of schizophrenia?
A: That’s a good question. One of the reason’s I think stigma exists and why people are so frightened of this illness is that the components of an illness like schizophrenia are made up of, and lack (in the case of the illness) the same set of emotions, feelings, and human behaviors that each and every one of us take for granted as what makes us “normal” on a daily basis. It’s just a question of degree.
I think that when people see someone behaving or talking in a way they do not understand they get scared because they know that they are capable of going there themselves on some level. People who look at me and how I was may think “Wow, if she can be in that condition, maybe I could also become that way too.”
Q: I understand. My experience with depression taught me that we all walk a very thin line, and at anytime, any one of us can fall off that thin line of normalcy onto the side of an illness, mental or physical, no matter who we are or at what station in life we might be at.
A: Yes. And the treatment professionals and service providers who helped me the most were the people that were in touch with that idea. I am grateful to all of those who have helped me along the way. Today, I am also grateful that I can share my story as a way of inspiring others who might be going through a difficult time in their life.
Susan Weinreich is currently working on a documentary about her recovery, titled “Changing Minds,” with Nebraska film maker Gary Hochman. You can view Susan’s artwork on her website at www.susanweinreich.com. Her art studio is located at 1006 Brown Street – Studio 208, Peekskill, New York, 10566. To inquire about purchasing her artwork or to discuss possible speaking engagements, you can email her at email@example.com.