VOLUME 1, ISSUE 1 | April 2005
Why I Decided to Stop Being Schizophrenic at 50
By DEBORAH EMIN
Photographed by BRETT C VERMILYEA
Every experience in our lives has a beginning, a middle, and an end. In
tracing the trajectory of my experiences as a schizophrenic there was
certainly a clear beginning. However, it is only now that the experience
has ended that I know its mid-point and its real ending. The fact that it
ended when I was 50 had much to do with how my life evolved while
living with this illness, and also the effects of various medications that
were prescribed to me. The story that follows has more to do with the
evolution of my life and less to do with the medication, because relating
what medications do and don’t do is a separate story. What is clear to
me, though, is that not everyone who has been diagnosed with
schizophrenia (and there are many different forms of this illness) is as
lucky as I have been. To understand the evolution, we need to start at
the beginning.
Because in the beginning . . .
It was truly perplexing to know just what was happening. One evening
as I sat at my desk in my bedroom studying for a Latin American History
test everything changed. The sounds and images in my mind became
altered; it was as if a switch had been turned on and the world was no
longer the one it had been when I sat down to study. Nothing different
happened that night. I had done what I normally did after dinner—went
to my room to study. I was 18 years old and full of what I thought were
extraordinary intellectual and imaginative gifts. But one minute I was
studying and in the next the words on the page of my textbook came
back amplified, distorted and mocking me. It was as if the name of every
geographic spot on the map in the textbook suddenly found its voice
and began to scream at me. I wouldn’t call their voices a choir because
they had no forward momentum; they didn’t work together, but rather
ricocheted around. I couldn’t tell if they were inside my head or in the
tracing the trajectory of my experiences as a schizophrenic there was
certainly a clear beginning. However, it is only now that the experience
has ended that I know its mid-point and its real ending. The fact that it
ended when I was 50 had much to do with how my life evolved while
living with this illness, and also the effects of various medications that
were prescribed to me. The story that follows has more to do with the
evolution of my life and less to do with the medication, because relating
what medications do and don’t do is a separate story. What is clear to
me, though, is that not everyone who has been diagnosed with
schizophrenia (and there are many different forms of this illness) is as
lucky as I have been. To understand the evolution, we need to start at
the beginning.
Because in the beginning . . .
It was truly perplexing to know just what was happening. One evening
as I sat at my desk in my bedroom studying for a Latin American History
test everything changed. The sounds and images in my mind became
altered; it was as if a switch had been turned on and the world was no
longer the one it had been when I sat down to study. Nothing different
happened that night. I had done what I normally did after dinner—went
to my room to study. I was 18 years old and full of what I thought were
extraordinary intellectual and imaginative gifts. But one minute I was
studying and in the next the words on the page of my textbook came
back amplified, distorted and mocking me. It was as if the name of every
geographic spot on the map in the textbook suddenly found its voice
and began to scream at me. I wouldn’t call their voices a choir because
they had no forward momentum; they didn’t work together, but rather
ricocheted around. I couldn’t tell if they were inside my head or in the
room or just where they were precisely. With a metastasizing pace, these voices took over my evening, and then proceeded to take
over my life, dictating the things I could and could not do. Little by little, without knowing how the progression occurred, they also
took visual form as well.
Imagine if you can, never being able to run away or hide from these sounds and images; unfortunately they became my only
companions. Eventually, they became physical sensations as well that crawled all over my hands and legs. The level of noise, the
distractions of seeing things moving along my hands or feeling them within my clothing as well as the ways in which peoples’
faces or body parts became distorted caused most normal interactions with others to cease. It was just too terrifying to look at
people because I didn’t know if they saw and heard what I did.
Further adding to the strangeness of this was the fact that I had no vocabulary for describing what was happening to me. I see
more clearly now that the illness caused me to behave strangely, mostly because of the adjustments I had to make in order to
perform ordinary tasks like walking and dressing with the constant pandemonium that was going on inside me. My inner world
was filled with so many different stories that, as you can imagine, it became impossible to continue being a student. In the spring
of my senior year, I just stood up during a class and walked out of the building. I had no idea where I was going, but I could not
pretend to be a student any longer. While I truly didn’t know what was going to happen to me, I could no longer act as if I were like
everyone else. And by walking out of the school, I found the only way I could to say that something was terribly wrong.
I ended up in a mental hospital for four months and then spent the next 30 years of my life trying to understand two things: the first
was who was this new Deborah who had become schizophrenic, and the second was what did this identity mean.
I have never written about this before. The experience was in so many ways mostly internal. While the nightmarish content of it
could probably be portrayed poetically, it is the other aspect of it that interests me more. I was much more engaged by what was
going on inside my head than by what was going on in the world around me, and I truly went nowhere and produced nothing.
Yes, I was alive during those years; yes, I was trying to pursue a life of sorts and trying to remain as functional and self-sufficient
as possible. At the same time I was hanging on desperately to my identity as the schizophrenic. Like many people who spend a
major portion of their lives with an illness, the illness became who I was and determined what it was I would and would not do.
The medicalization of my life didn’t offer much in the way of fulfillment but it did give me a purpose; it made me feel special. For
most of those years, I couldn’t trust myself to perceive accurately what was happening either in the world around me or within
myself. To not be able to trust oneself is, I think, one of the most hellish ways to live, and it caused me to doubt whether my life
was worth living.
At the time I was released from the hospital, I was in no better shape than when I went in except now I had been diagnosed as a
schizophrenic. Despite the fact that it was the late 1960s and there was a certain fashion to mental illness, there was and
continues to be a real stigma attached to being schizophrenia. I could at moments delude myself about my daily life and think of
this persona as the silent sufferer, the stoic who truly understood pain and torment. But mostly this was all bravura.
My next trick was to try to ignore the illness. However, ignoring it didn’t mean that it went away and forgot about me. It worsened
and robbed me of much quality of life. Yet I knew that I needed to do something to help myself. Still trying to maintain that stoic
outlook, I jokingly told my friends that I had to choose between taking Italian lessons or going into therapy because I couldn’t afford
to do both. They all heaved a collective sigh of relief when I chose therapy.
Things always get worse before they can get better...
Thus begins the mid-point of my story. How do we find the people we need in our lives? I often ask myself how it was that I found
the therapist I did, because without her I never would have learned what it meant to be schizophrenic. One of her greatest gifts was
that she was not afraid of people like me; her other great gift was that she was able to become personally involved with her
patients. She had no trouble showing us how she applied her therapeutic insights to her life, and thus we learned how to apply
them to ours.
It was phenomenally lucky that she was willing to take me on and to spend the next 20 years working with me. She took a gamble.
My family was not close by or capable of being involved with me. I lived quite frugally, worked sporadically, was isolated a good
deal of the time and thus she had to be both family and coach to me so that I could build up a new inner world that could be
healthier than the one I had been living in. She also had to act as if she trusted me to stay safe and not harm myself. The fact that
she was able to do this for so many years is a testament to how therapy works when it is practiced by someone who is aware of
its real power and doesn’t abuse it.
For a long period of time, I was severely ill. I ended up needing to be hospitalized again because I could not control the frequency
of psychotic episodes, and needed to be somewhere where the cycle could be broken.
At my lowest point, shortly after getting out of the hospital that second time, I realized that something had to change. My therapist
and I had often talked about my diagnosis as a “choice.” That I could “choose” to be schizophrenic, or not. In a panic, I thought that
meant that I had chosen deliberately to be schizophrenic. I became enraged at myself as well as mortified that all these years of
torment were in fact nothing more than a long and boring case of malingering. I felt like a fake and thought I didn’t deserve to be in
therapy, or to be taking money from my family, or to even be alive.
It was interesting, later, to observe how my misunderstanding of the word “choice” kept me from thinking about what it actually
means. In terms of the therapeutic work I had been involved in for so long, my therapist’s main goal had been two-fold: to re-wire
the way my brain worked so that I didn’t keep using the same distorted ways of perceiving the world (meaning learning how not to,
for example, hallucinate when things became stressful) and secondly she had to help me to grow up all over again since my
earlier development had been stunted.
Choosing an end to that way of life...
Having arrived at this crossroad, I felt more like the trapeze artist having to learn to trust that when she lets go of the swing with one
hand, the other will indeed grasp the waiting swing. That kind of faith caused a rather long period of anxiety; it was if I stood waiting
to make sure that the swing would indeed be there when I reached out. It must always be that way when we have to end
something that has sustained us for many years. It was not easy . . . and then it was necessary.
How I decided to change seems from this vantage point rather simple. Just like the switch had been turned on, I now turned the
switch off and I left the room and knew I would never have to return to it again. Having now found things in the outer world much
more interesting than what was going on inside of me allowed me to leave the me who was schizophrenic behind.
At that time, a gathering strength had been gaining ground. However, the moment was just as ordinary as sitting at my desk when
I was 18. Now, though, I was much older and taking a bath one morning, preparing to teach a class. Somehow I had been able to
find a job that I enjoyed. I was teaching a senior- level writing class, one that I had created, but not teaching well. I distinctly
remember getting out of the bathtub and as if turning off a switch, I realized my mind was filled with the struggles that my students
were having trying to understand how to write dialogue. This may seem too ridiculous a statement, but for the first time in my life
my mind was not consumed with all the paraphernalia of my schizophrenic identity. My mind was filled (and gladly so) with the
problem of explaining to my students how to allow the characters in their stories to speak in distinct voices.
I won’t say that I cried at that moment or that the heavens opened and admitted me into the world of the living. But I can say that at
that moment I knew I had made the choice to change, to not be the Deborah whose identity was that of a schizophrenic, but to just
be myself.
When I have tried to describe this moment to my friends, it has always sounded to me as if I were stating something banal and
obvious. In fact, I often think that life has become for me a series of revelations of the obvious.
What is apparent to me and why I wanted to finally tell this story is that it is obvious that being schizophrenic or manic depressive
or diabetic or suffering from any number of difficult types of illnesses whether of the mental or physical type is totally consuming.
But from my experience, I have to add that if we are lucky, we are given a choice about how to really live with it. I don’t think I could
be the Deborah I am today had I not been for a very long time schizophrenic; but I must admit that I much prefer the Deborah who
is no longer schizophrenic to the one who was. She just seems to be a lot more interesting and interested in things she never
could do or understand when she was consumed with being schizophrenic.
The real ending . . .
In the midst of telling my story, it was necessary to make a lot of choices about what to include and what to exclude. Those choices
were predicated on the constraints of this format, but also on my own hesitation to come clean with what happened to me. The
kind of anxiety and the sheer terror of saying that I was and had been and will always live with the memory of that illness in this
public way has made me realize the power of the word, of saying schizophrenic so many times and attaching my name to that
word.
At a point in this very long journey I met a woman who purported to be a psychic and who thought she could read one’s future as
well as possessing other kinds of “gifts.” While talking to her, I said that one of my most severe problems was that I was always
afraid to tell people that I was schizophrenic. She thought about that statement for about two seconds (maybe that was all she
thought it deserved) and replied that maybe someday that wouldn’t be how I thought about myself. She said, “That may not be who
you are in the future.”
I left her office and went to buy something to drink and got a carrot juice, which I then proceeded to spill all over my white shirt. On
the ride home on the subway, I sat with that big orange splotch on my shirt and I was so embarrassed. But walking home from the
subway, it just became a silly thing I had done and I was in a hurry because the next day I was flying somewhere to visit some
family and friends and I quickly forgot the orange mess on my shirt.
I won’t forget that I was schizophrenic but it is now to me more a symbol of something I experienced than an identity. It shall
continue to be that.
over my life, dictating the things I could and could not do. Little by little, without knowing how the progression occurred, they also
took visual form as well.
Imagine if you can, never being able to run away or hide from these sounds and images; unfortunately they became my only
companions. Eventually, they became physical sensations as well that crawled all over my hands and legs. The level of noise, the
distractions of seeing things moving along my hands or feeling them within my clothing as well as the ways in which peoples’
faces or body parts became distorted caused most normal interactions with others to cease. It was just too terrifying to look at
people because I didn’t know if they saw and heard what I did.
Further adding to the strangeness of this was the fact that I had no vocabulary for describing what was happening to me. I see
more clearly now that the illness caused me to behave strangely, mostly because of the adjustments I had to make in order to
perform ordinary tasks like walking and dressing with the constant pandemonium that was going on inside me. My inner world
was filled with so many different stories that, as you can imagine, it became impossible to continue being a student. In the spring
of my senior year, I just stood up during a class and walked out of the building. I had no idea where I was going, but I could not
pretend to be a student any longer. While I truly didn’t know what was going to happen to me, I could no longer act as if I were like
everyone else. And by walking out of the school, I found the only way I could to say that something was terribly wrong.
I ended up in a mental hospital for four months and then spent the next 30 years of my life trying to understand two things: the first
was who was this new Deborah who had become schizophrenic, and the second was what did this identity mean.
I have never written about this before. The experience was in so many ways mostly internal. While the nightmarish content of it
could probably be portrayed poetically, it is the other aspect of it that interests me more. I was much more engaged by what was
going on inside my head than by what was going on in the world around me, and I truly went nowhere and produced nothing.
Yes, I was alive during those years; yes, I was trying to pursue a life of sorts and trying to remain as functional and self-sufficient
as possible. At the same time I was hanging on desperately to my identity as the schizophrenic. Like many people who spend a
major portion of their lives with an illness, the illness became who I was and determined what it was I would and would not do.
The medicalization of my life didn’t offer much in the way of fulfillment but it did give me a purpose; it made me feel special. For
most of those years, I couldn’t trust myself to perceive accurately what was happening either in the world around me or within
myself. To not be able to trust oneself is, I think, one of the most hellish ways to live, and it caused me to doubt whether my life
was worth living.
At the time I was released from the hospital, I was in no better shape than when I went in except now I had been diagnosed as a
schizophrenic. Despite the fact that it was the late 1960s and there was a certain fashion to mental illness, there was and
continues to be a real stigma attached to being schizophrenia. I could at moments delude myself about my daily life and think of
this persona as the silent sufferer, the stoic who truly understood pain and torment. But mostly this was all bravura.
My next trick was to try to ignore the illness. However, ignoring it didn’t mean that it went away and forgot about me. It worsened
and robbed me of much quality of life. Yet I knew that I needed to do something to help myself. Still trying to maintain that stoic
outlook, I jokingly told my friends that I had to choose between taking Italian lessons or going into therapy because I couldn’t afford
to do both. They all heaved a collective sigh of relief when I chose therapy.
Things always get worse before they can get better...
Thus begins the mid-point of my story. How do we find the people we need in our lives? I often ask myself how it was that I found
the therapist I did, because without her I never would have learned what it meant to be schizophrenic. One of her greatest gifts was
that she was not afraid of people like me; her other great gift was that she was able to become personally involved with her
patients. She had no trouble showing us how she applied her therapeutic insights to her life, and thus we learned how to apply
them to ours.
It was phenomenally lucky that she was willing to take me on and to spend the next 20 years working with me. She took a gamble.
My family was not close by or capable of being involved with me. I lived quite frugally, worked sporadically, was isolated a good
deal of the time and thus she had to be both family and coach to me so that I could build up a new inner world that could be
healthier than the one I had been living in. She also had to act as if she trusted me to stay safe and not harm myself. The fact that
she was able to do this for so many years is a testament to how therapy works when it is practiced by someone who is aware of
its real power and doesn’t abuse it.
For a long period of time, I was severely ill. I ended up needing to be hospitalized again because I could not control the frequency
of psychotic episodes, and needed to be somewhere where the cycle could be broken.
At my lowest point, shortly after getting out of the hospital that second time, I realized that something had to change. My therapist
and I had often talked about my diagnosis as a “choice.” That I could “choose” to be schizophrenic, or not. In a panic, I thought that
meant that I had chosen deliberately to be schizophrenic. I became enraged at myself as well as mortified that all these years of
torment were in fact nothing more than a long and boring case of malingering. I felt like a fake and thought I didn’t deserve to be in
therapy, or to be taking money from my family, or to even be alive.
It was interesting, later, to observe how my misunderstanding of the word “choice” kept me from thinking about what it actually
means. In terms of the therapeutic work I had been involved in for so long, my therapist’s main goal had been two-fold: to re-wire
the way my brain worked so that I didn’t keep using the same distorted ways of perceiving the world (meaning learning how not to,
for example, hallucinate when things became stressful) and secondly she had to help me to grow up all over again since my
earlier development had been stunted.
Choosing an end to that way of life...
Having arrived at this crossroad, I felt more like the trapeze artist having to learn to trust that when she lets go of the swing with one
hand, the other will indeed grasp the waiting swing. That kind of faith caused a rather long period of anxiety; it was if I stood waiting
to make sure that the swing would indeed be there when I reached out. It must always be that way when we have to end
something that has sustained us for many years. It was not easy . . . and then it was necessary.
How I decided to change seems from this vantage point rather simple. Just like the switch had been turned on, I now turned the
switch off and I left the room and knew I would never have to return to it again. Having now found things in the outer world much
more interesting than what was going on inside of me allowed me to leave the me who was schizophrenic behind.
At that time, a gathering strength had been gaining ground. However, the moment was just as ordinary as sitting at my desk when
I was 18. Now, though, I was much older and taking a bath one morning, preparing to teach a class. Somehow I had been able to
find a job that I enjoyed. I was teaching a senior- level writing class, one that I had created, but not teaching well. I distinctly
remember getting out of the bathtub and as if turning off a switch, I realized my mind was filled with the struggles that my students
were having trying to understand how to write dialogue. This may seem too ridiculous a statement, but for the first time in my life
my mind was not consumed with all the paraphernalia of my schizophrenic identity. My mind was filled (and gladly so) with the
problem of explaining to my students how to allow the characters in their stories to speak in distinct voices.
I won’t say that I cried at that moment or that the heavens opened and admitted me into the world of the living. But I can say that at
that moment I knew I had made the choice to change, to not be the Deborah whose identity was that of a schizophrenic, but to just
be myself.
When I have tried to describe this moment to my friends, it has always sounded to me as if I were stating something banal and
obvious. In fact, I often think that life has become for me a series of revelations of the obvious.
What is apparent to me and why I wanted to finally tell this story is that it is obvious that being schizophrenic or manic depressive
or diabetic or suffering from any number of difficult types of illnesses whether of the mental or physical type is totally consuming.
But from my experience, I have to add that if we are lucky, we are given a choice about how to really live with it. I don’t think I could
be the Deborah I am today had I not been for a very long time schizophrenic; but I must admit that I much prefer the Deborah who
is no longer schizophrenic to the one who was. She just seems to be a lot more interesting and interested in things she never
could do or understand when she was consumed with being schizophrenic.
The real ending . . .
In the midst of telling my story, it was necessary to make a lot of choices about what to include and what to exclude. Those choices
were predicated on the constraints of this format, but also on my own hesitation to come clean with what happened to me. The
kind of anxiety and the sheer terror of saying that I was and had been and will always live with the memory of that illness in this
public way has made me realize the power of the word, of saying schizophrenic so many times and attaching my name to that
word.
At a point in this very long journey I met a woman who purported to be a psychic and who thought she could read one’s future as
well as possessing other kinds of “gifts.” While talking to her, I said that one of my most severe problems was that I was always
afraid to tell people that I was schizophrenic. She thought about that statement for about two seconds (maybe that was all she
thought it deserved) and replied that maybe someday that wouldn’t be how I thought about myself. She said, “That may not be who
you are in the future.”
I left her office and went to buy something to drink and got a carrot juice, which I then proceeded to spill all over my white shirt. On
the ride home on the subway, I sat with that big orange splotch on my shirt and I was so embarrassed. But walking home from the
subway, it just became a silly thing I had done and I was in a hurry because the next day I was flying somewhere to visit some
family and friends and I quickly forgot the orange mess on my shirt.
I won’t forget that I was schizophrenic but it is now to me more a symbol of something I experienced than an identity. It shall
continue to be that.