Susan Harrington related the painful details of the death of her son Barrett at the recent press conference in Albany. Barrett was diagnosed...
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Tuesday, November 8, 2011
Sunday, November 6, 2011
A Nation Afflicted Like All Other Nations
If you're looking for a disease Orthodox Jews are immune from, try trichinosis. The following are my experiences with mental illness and...
Thursday, November 3, 2011
Through the Eyes of a Stranger - Part 1
Being diagnosed mentally ill does not mean that you have to be an outcast to yourself or society. Self-stigma is based on beliefs about ours...
Wednesday, October 26, 2011
Destigmatizing Mental Illness Through The Schools
How many of us have at one time or another sighed a very long sigh and said, "What if?" As the parent of a son with three psychiat...
Thursday, October 20, 2011
Answers From Margaret Ray's Mother
We all remember Margaret Ray who became fodder for the tabloid media for becoming obsessed with talk-show host David Letterman. She repeated...
Friday, October 14, 2011
One Patient's Journey to Mental Wellness
I remember my first visit to the Park Slope Center for Mental Health . As I rode the F train to the 7th Avenue station in Brooklyn, voices I...
Tuesday, October 11, 2011
The Procreative Urge
Walking through Central Park I can’t help but think of babies. Moms and nannies push infants in strollers with a happy gleam in their eyes. ...
Monday, October 10, 2011
A Pregnant Pause: Anti-Psychotic Medication And Growing A Baby
Whenever I attended a NAMI or NARSAD conference during the past ten years, I asked the medical panel the same question—albeit a hypothetical...
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Tuesday, November 8, 2011
Mother of Suicide Victim Speaks Out
Susan Harrington related the painful details of the death of her son Barrett at the recent press conference in Albany. Barrett was diagnosed with a serious mental illness during a recent incarceration at Riker’s Island for drug-dependent related crimes. He was released from Riker’s without a comprehensive treatment plan for his mental health needs, save for a three-day supply of antipsychotic medications. Barrett, because he did not have Medicaid eligibility, applied for Medicaid benefits after his release and had to endure long waits in hospital emergency rooms and pharmacies just to renew a five-day supply of medication. Despite these limited measures, his mental health deteriorated and he attempted suicide. He was admitted to a psychiatric inpatient unit only at his mother’s insistence and was discharged two weeks later without a comprehensive treatment plan. Left without necessary supports and services, he returned to drug use. He committed suicide shortly afterward at age 24. Five days after his suicide, Mrs. Harrington was notified that her son’s Medicaid application had been approved.
Ms. Harrington called for the passage of legislation to provide for 90 days of presumptive Medicaid eligibility for individuals leaving hospitals and correctional facilities. "I believe my son’s tragic death might well have been avoided had he been able to get the help he so badly needed and sought repeatedly," she said. "State government must act quickly to allow people stuck in the revolving door of the mental heath and correctional systems to promptly get the medication and services they need when returning to the community."
Ms. Harrington was joined by a large coalition of mental health advocates supporting reform. Presumptive Medicaid Eligibility will go beyond the Medication Grant program included in "Kendra’s Law" by providing access to all psychiatric services including medication, housing, comprehensive case management, day treatment and intensive rehabilitation programs. An individual will be able to receive services under Medicaid while an eligibility determination is being made—a process that routinely takes 60 to 90 days.
"A Medication Grants program with limited benefits and no guarantee that it will be available in each community of the state makes no sense from either a clinical or government efficiency standpoint," according to Susan Batkin, Director of the Mental Health Project at the Urban Justice Center in New York City, and coordinator for the Presumptive Medicaid Eligibility Coalition. "The existing Medicaid program is already available in all parts of the State, and adding additional state bureaucrats and hiring benefits managers to administer this new system merely diverts resources away from the patient into administration."
Harvey Rosenthal, Executive Director of the New York Association of Psychiatric Rehabilitation Services (NYAPRS), and chair of the Mental Health Action Network, added, "People in crisis need much more than just a pill. Presumptive Medicaid Eligibility will instead offer access to the full range of Medicaid-funded housing, treatment and support services we know are necessary to fully restore these persons to productive community life."
Ms. Harrington called for the passage of legislation to provide for 90 days of presumptive Medicaid eligibility for individuals leaving hospitals and correctional facilities. "I believe my son’s tragic death might well have been avoided had he been able to get the help he so badly needed and sought repeatedly," she said. "State government must act quickly to allow people stuck in the revolving door of the mental heath and correctional systems to promptly get the medication and services they need when returning to the community."
Ms. Harrington was joined by a large coalition of mental health advocates supporting reform. Presumptive Medicaid Eligibility will go beyond the Medication Grant program included in "Kendra’s Law" by providing access to all psychiatric services including medication, housing, comprehensive case management, day treatment and intensive rehabilitation programs. An individual will be able to receive services under Medicaid while an eligibility determination is being made—a process that routinely takes 60 to 90 days.
"A Medication Grants program with limited benefits and no guarantee that it will be available in each community of the state makes no sense from either a clinical or government efficiency standpoint," according to Susan Batkin, Director of the Mental Health Project at the Urban Justice Center in New York City, and coordinator for the Presumptive Medicaid Eligibility Coalition. "The existing Medicaid program is already available in all parts of the State, and adding additional state bureaucrats and hiring benefits managers to administer this new system merely diverts resources away from the patient into administration."
Harvey Rosenthal, Executive Director of the New York Association of Psychiatric Rehabilitation Services (NYAPRS), and chair of the Mental Health Action Network, added, "People in crisis need much more than just a pill. Presumptive Medicaid Eligibility will instead offer access to the full range of Medicaid-funded housing, treatment and support services we know are necessary to fully restore these persons to productive community life."
Sunday, November 6, 2011
A Nation Afflicted Like All Other Nations
If you're looking for a disease Orthodox Jews are immune from, try trichinosis. The following are my experiences with mental illness and why I think mental illness is as common in Monsey as it is in Bensonhurst.
"You ought to get yourself to Rav Smith," I told my friend Shimon very late one night. My advice was for him to change drachim in hashkafa (way of viewing) from chassidus to a shtikel (emotional chassidic) to a somewhat more litvish (rational) approach. I thought the change would ease his emotions. As if that mattered, as a bizzare descent into an agony called schizophrenia had begun for Shimon. Shimon was "losing it" and I didn't know what to do.
Shimon's elaborate euphoric grandstanding at 2 a.m. about my being able to coast through college was crystal clear to him. After all, I had cut corners on my minor psych. assignment. Other verbal rantings ought to have tipped me off that an emergency call to 911 or his therapist was in order. Seventy-two hours after my friend Shimon showed signs of being ill, I didn't pick up the phone. At nineteen (years old), all I could muster was a lame response about Torah outlook - not medical outlook.
Next time it was me, not my good friend. It was two years later and I was learning in Yerushalayim (Jersusalem). The learning stopped as my mind became sick. My brother, Reuven, desperate to help me, took me to a talmid chochom (learned wise man) near the Old City. As the three of us sat there in his small, sparcely decorated apartment, he told me something about writing a letter.
Two short hours later, after that futile letter advice, my life became a blur of bizarre sequences. Delusions that, due to their content and ability to make me feel removed from reality, evoked fierce pain. To this day I don't know what was real or what was imagined that horrid Erev (eve of) Yom Kippur night.
One delusion--as I think about it now--is quite funny. You see, I was a ritual watchman of the dead the winter before I went to Israel and got sick. During the Asseres Yemei Teshuva (ten days of atonement) I got the idea in my head that the previous winter I was somehow guilty of murdering some of these people. The idea was played over and over in my mind. As I couldn't shake the concept and thus the guilt -- the pain of it all increased. Very funny.
Guilt. Not the self-cleansing type of Yom Kippur, but the self-destructive, overpowering type is what I experienced in Yerushalayim. For the majority of people, the ways of Torah are very pleasant. On occasion, however, like my experience in Yerushalayim, it can be an impetus toward mental illness. But, whatever the home, or whatever the religion of the home, the situation there doesn't "make" one "crazy"; virtually all doctors recognize a strong organic component to mental illness. My funeral home delusion, which I mentioned earlier, probably came from a physical problem in my brain plus my imagination. If that is so, strictly in regard to the physiological aspect of mental illness, why would Jews be different than non-Jews? After all, Jews are susceptible to epilepsy and diabetes--just like non-Jews.
Epilepsy? Diabetes? Years ago, if I would have seen an article like this one written in a religious periodical, I would have thought it was for me, my friend Shimon and a mere handful of Orthodox deviants. Right after I came home from Yerushalayin, my brother helped me apply for Ohel Community Residence for mentally ill adults. The wait was an entire year. Evidently, there were more "deviants" than I had thought.
Six months ago my concept of mental illness in the Orthodox community changed again. I found out that a pharmacy serving predominantly Othordox Jews prescribes one drug more than any other--not for heart disease, nor for infant maladies, but for manic depressives. That drug is lithium.
Mental Illness is equally common amongst Orthodox Jews, irreligious, and non-Jews. So say two Jewish mental health experts. The responses were almost identical; something to the effect of--mental illness is almost exactly equal amongst Jew and non-Jew. They both confirmed that Orthodox Jews had about the same degree of illness, in their estimates, as non-Jews. One added that alcoholism is less of a problem, the other claimed depression is a greater problem. Both emphasized that they were not speaking based on any study and thus did not want to be quoted. However, both spoke without hesitation.
Since my getting sick in Yerushalayim, I've noticed that there is a group (and the group is large) which is sure that these two experts are wrong. We're too Heimish (homey) to get bulimia or have anxiety disorders. This group sometimes desperately hides its illnesses. And they do hide them well.
I'll tell you a story. At a clinic in the Upper East Side of Manhattan, which I went to in the early nineties, I got into a curious mood. I asked if there were any other Orthodox patients. "Yes," the receptionist responded nonchalantly, "but they go through the special door. They're afraid of being noticed."
I spoke to Rabbi Abraham J. Twerski, M.D. He spoke about this phenomenon of Jewish families having a tendency to keep mental illness private. Thus, they may delay or hold back treatment. On the postive side, he spoke of improvements. Organizations such as Petach Tikvah, Mishkan and Ohel are gaining much respect in recent years. I'm glad to hear that. Any improved situation in our dealing with mental illness means several things. It means we will call doctors sooner, not waiting to get treatment, ashamed of ones own children. It means even nineteen-year-olds will call Hatzala (local Orthodox emergency service) or 911--not nineteen-year-olds telling the sick one to go to a more litvish shiur (rational approach). I hope less have to go through the delusions I went through--especially if they work in a morgue.
"You ought to get yourself to Rav Smith," I told my friend Shimon very late one night. My advice was for him to change drachim in hashkafa (way of viewing) from chassidus to a shtikel (emotional chassidic) to a somewhat more litvish (rational) approach. I thought the change would ease his emotions. As if that mattered, as a bizzare descent into an agony called schizophrenia had begun for Shimon. Shimon was "losing it" and I didn't know what to do.
Shimon's elaborate euphoric grandstanding at 2 a.m. about my being able to coast through college was crystal clear to him. After all, I had cut corners on my minor psych. assignment. Other verbal rantings ought to have tipped me off that an emergency call to 911 or his therapist was in order. Seventy-two hours after my friend Shimon showed signs of being ill, I didn't pick up the phone. At nineteen (years old), all I could muster was a lame response about Torah outlook - not medical outlook.
Next time it was me, not my good friend. It was two years later and I was learning in Yerushalayim (Jersusalem). The learning stopped as my mind became sick. My brother, Reuven, desperate to help me, took me to a talmid chochom (learned wise man) near the Old City. As the three of us sat there in his small, sparcely decorated apartment, he told me something about writing a letter.
Two short hours later, after that futile letter advice, my life became a blur of bizarre sequences. Delusions that, due to their content and ability to make me feel removed from reality, evoked fierce pain. To this day I don't know what was real or what was imagined that horrid Erev (eve of) Yom Kippur night.
One delusion--as I think about it now--is quite funny. You see, I was a ritual watchman of the dead the winter before I went to Israel and got sick. During the Asseres Yemei Teshuva (ten days of atonement) I got the idea in my head that the previous winter I was somehow guilty of murdering some of these people. The idea was played over and over in my mind. As I couldn't shake the concept and thus the guilt -- the pain of it all increased. Very funny.
Guilt. Not the self-cleansing type of Yom Kippur, but the self-destructive, overpowering type is what I experienced in Yerushalayim. For the majority of people, the ways of Torah are very pleasant. On occasion, however, like my experience in Yerushalayim, it can be an impetus toward mental illness. But, whatever the home, or whatever the religion of the home, the situation there doesn't "make" one "crazy"; virtually all doctors recognize a strong organic component to mental illness. My funeral home delusion, which I mentioned earlier, probably came from a physical problem in my brain plus my imagination. If that is so, strictly in regard to the physiological aspect of mental illness, why would Jews be different than non-Jews? After all, Jews are susceptible to epilepsy and diabetes--just like non-Jews.
Epilepsy? Diabetes? Years ago, if I would have seen an article like this one written in a religious periodical, I would have thought it was for me, my friend Shimon and a mere handful of Orthodox deviants. Right after I came home from Yerushalayin, my brother helped me apply for Ohel Community Residence for mentally ill adults. The wait was an entire year. Evidently, there were more "deviants" than I had thought.
Six months ago my concept of mental illness in the Orthodox community changed again. I found out that a pharmacy serving predominantly Othordox Jews prescribes one drug more than any other--not for heart disease, nor for infant maladies, but for manic depressives. That drug is lithium.
Mental Illness is equally common amongst Orthodox Jews, irreligious, and non-Jews. So say two Jewish mental health experts. The responses were almost identical; something to the effect of--mental illness is almost exactly equal amongst Jew and non-Jew. They both confirmed that Orthodox Jews had about the same degree of illness, in their estimates, as non-Jews. One added that alcoholism is less of a problem, the other claimed depression is a greater problem. Both emphasized that they were not speaking based on any study and thus did not want to be quoted. However, both spoke without hesitation.
Since my getting sick in Yerushalayim, I've noticed that there is a group (and the group is large) which is sure that these two experts are wrong. We're too Heimish (homey) to get bulimia or have anxiety disorders. This group sometimes desperately hides its illnesses. And they do hide them well.
I'll tell you a story. At a clinic in the Upper East Side of Manhattan, which I went to in the early nineties, I got into a curious mood. I asked if there were any other Orthodox patients. "Yes," the receptionist responded nonchalantly, "but they go through the special door. They're afraid of being noticed."
I spoke to Rabbi Abraham J. Twerski, M.D. He spoke about this phenomenon of Jewish families having a tendency to keep mental illness private. Thus, they may delay or hold back treatment. On the postive side, he spoke of improvements. Organizations such as Petach Tikvah, Mishkan and Ohel are gaining much respect in recent years. I'm glad to hear that. Any improved situation in our dealing with mental illness means several things. It means we will call doctors sooner, not waiting to get treatment, ashamed of ones own children. It means even nineteen-year-olds will call Hatzala (local Orthodox emergency service) or 911--not nineteen-year-olds telling the sick one to go to a more litvish shiur (rational approach). I hope less have to go through the delusions I went through--especially if they work in a morgue.
Thursday, November 3, 2011
Through the Eyes of a Stranger - Part 1
Being diagnosed mentally ill does not mean that you have to be an outcast to yourself or society. Self-stigma is based on beliefs about ourselves as a result of influences of: 1) Society -childhood, family, friends, acquaintances values towards the mentally ill; 2) Institutional experiences, schooling, religious organizations, professionals and businesses attitudes about mental illness; 3) Media - television, newspaper, movies, etc. and their portrayal of the mentally ill population.
The identification I've made of self-stigma and its components are not based on books I've read, but rather on the life I've lived; I will begin with a brief history of my life and story. In 1989, I was diagnosed with paranoid schizophrenia. After years of private therapy, counseling and medication treatments, I was no further along toward recovery than when I started my downward spiral. In 1995, after five hospitalizations, a broken marriage, loss of income, an arrest and a failed suicide attempt, I finally found my spiritual self and began a road to recovery. This while in my sixth hospitalization in as many years. Finally, I was placed on medications that helped me. I was sent to live in an adult home where I would receive custodial care and begin a program with the SBPC's Bensonhurst Clinic.
As I became more involved with the clinic, I began to realize that I was stigmatizing myself due to my prior socialization. This had to change in order for me to recovery. By 1996, my complete diagnosis with paranoid schizophrenia with anxiety disorder and major depression - what a mouthful!
Since I was "high functioning," I was asked to participate in a facilitator training program sponsored at the SBPC utilizing Ed Knight's Mental Health Empowerment Project. I loved it! My enthusiasm grew and I became a participant in the SBPC Worker Development Program as a Consumer Advocate Trainee. Under this program, a recipient of mental health services can earn a small fee for services rendered while still in treatment. The program is helpful in developing self-esteem and skills needed to return to the work force. My enthusiasm grew, so did my self-esteem, and I began to overcome my "stigmatization" of myself.
I took my medications regularly, went to several professional and consumer led groups, and began to develop as a leader. I now look back and realize that although many professionals tried to help me, I couldn't begin to achieve my goals, dreams and desires for the future until I saw myself through more positive eyes.
The direction my life took at this point was toward a mode of recovery and a desire to share what I had learned over these years with other who had similar experiences. Self-"stigmatization" is stigma in its most destructive form since it is directed from the self upon the self. To overcome this takes strong will and the support of other consumers, self-help groups, providers of mental health services, family, and a responsive system.
In a research article by Courtenay Harding published in 1996 she quotes a group of men who were sitting in rocking chairs on the front porches of Board and Care homes. When asked why they were not working they said, "Well, my family gave up on me; so I gave up on me." Self-stigma thus developed from years of demoralization. Clearly, this is a major hurdle to overcome if recovery is to begin on any level.
The identification I've made of self-stigma and its components are not based on books I've read, but rather on the life I've lived; I will begin with a brief history of my life and story. In 1989, I was diagnosed with paranoid schizophrenia. After years of private therapy, counseling and medication treatments, I was no further along toward recovery than when I started my downward spiral. In 1995, after five hospitalizations, a broken marriage, loss of income, an arrest and a failed suicide attempt, I finally found my spiritual self and began a road to recovery. This while in my sixth hospitalization in as many years. Finally, I was placed on medications that helped me. I was sent to live in an adult home where I would receive custodial care and begin a program with the SBPC's Bensonhurst Clinic.
As I became more involved with the clinic, I began to realize that I was stigmatizing myself due to my prior socialization. This had to change in order for me to recovery. By 1996, my complete diagnosis with paranoid schizophrenia with anxiety disorder and major depression - what a mouthful!
Since I was "high functioning," I was asked to participate in a facilitator training program sponsored at the SBPC utilizing Ed Knight's Mental Health Empowerment Project. I loved it! My enthusiasm grew and I became a participant in the SBPC Worker Development Program as a Consumer Advocate Trainee. Under this program, a recipient of mental health services can earn a small fee for services rendered while still in treatment. The program is helpful in developing self-esteem and skills needed to return to the work force. My enthusiasm grew, so did my self-esteem, and I began to overcome my "stigmatization" of myself.
I took my medications regularly, went to several professional and consumer led groups, and began to develop as a leader. I now look back and realize that although many professionals tried to help me, I couldn't begin to achieve my goals, dreams and desires for the future until I saw myself through more positive eyes.
The direction my life took at this point was toward a mode of recovery and a desire to share what I had learned over these years with other who had similar experiences. Self-"stigmatization" is stigma in its most destructive form since it is directed from the self upon the self. To overcome this takes strong will and the support of other consumers, self-help groups, providers of mental health services, family, and a responsive system.
In a research article by Courtenay Harding published in 1996 she quotes a group of men who were sitting in rocking chairs on the front porches of Board and Care homes. When asked why they were not working they said, "Well, my family gave up on me; so I gave up on me." Self-stigma thus developed from years of demoralization. Clearly, this is a major hurdle to overcome if recovery is to begin on any level.
Wednesday, October 26, 2011
Destigmatizing Mental Illness Through The Schools
How many of us have at one time or another sighed a very long sigh and said, "What if?" As the parent of a son with three psychiatric diagnoses, schizophrenia, OCD, and panic disorder, my "what ifs" center around him. What if we had been more knowledgeable about mental illness and recognized Doug's symptoms early on? What if he had been diagnosed correctly and treated immediately? What if his friends hadn't deserted him? The list of "could-haves" and "might-have-beens" goes on and on accompanied by the requisite recriminations and self-doubt.
I still remember believing that Doug had an undiagnosed attention deficit disorder. Why he barely focused on anything I said. It got so bad that if I had to tell him something really important, I would have to hold his head to get him to look at me and then over enunciate every word. It was like speaking to someone who was deaf. Even then I wasn't sure that what I had to say was really penetrating that clearly preoccupied brain of his.
And I remember, too, that once he had his first psychotic break and there was no denying there was something very, very wrong, his friends didn't know what to do either. They were frightened and distraught, but no one would give them any information. What's wrong with Doug? A deafening silence because after all, nothing could be revealed. Confidentiality, you know, was the way guidance counselors and school psychologists explained it.
But, of course, there is no going backward. We all have to accept where we are at the moment and look ahead to what we hope will be a better life for ourselves, our family members, and everyone else with a major mental illness. And that brings me to what for me has become a consuming passion: the mission to change attitudes about mental illness by educating all children and teens about these devastating disorders through the schools.
Beginning in 1993 with matching grants from NAMI and NAMI-NYS, I worked with other teachers with mental illness in their families to develop lesson plans on mental illness for three grade levels: upper elementary, middle school, and high school. These lessons humanized serious mental illness. Through sharing our family stories, students learned not just the facts about mental illness, but also the emotional toll these crippling illnesses take on everyone involved.
Elementary school students learned about Lisa whose brother had recently been hospitalized with a serious psychiatric disorder. What, she wondered, had happened to her brother who had always been so close and now spent much of his day locked in his room? And what should she do about classmates who were overheard making fun of her brother and calling him "a mental?"
Middle school students learned about a high achieving high school student who began to unravel during a summer at camp. The aftermath of a fight with another camper took over his life, and what should have been a meaningless scrape over nothing very important became something that preoccupied his every waking hour. He would sue his attacker, he would sue the camp, and he wouldn't rest until justice had been done. His paranoia and obsessive behavior finally came to a head with him cowering in the corner of his room in a psychiatric hospital.
High school students were asked to examine their attitudes and those of their community about mental illness. What words do they associate with mental illness? What impact might this kind of stigmatizing language have on someone with a mental illness? How would it affect their family? How would you and others feel if a group home moved into your community? How would the people in the group home feel? And through discussion and anecdotes students learn the symptoms of schizophrenia and the impact of stigma. They are clearly moved as they hear about a formerly popular young man whose friends thoughtlessly desert him when he develops the symptoms of schizophrenia.
The popularity of these lessons was such that in 1998 they were expanded as part of NAMI's campaign to end discrimination. They now contain posters, games, follow-up activities tied to the general curriculum as well as additional lessons. The posters and games proved to be a particular hit. A cartoon brain with a bandage and an ice pack on its head is at the top of the elementary school poster. A caption beside it reads: "Brains can get sick, but they can also get well again." And "The Brain Game," a competitive board game which rewards stigma busting and penalizes stigmatizing behavior, has been especially popular with middle school students.
Happily the popularity of "Breaking the Silence" (BTS) extends beyond. For example, this past year all health education administrators in the New York Public Schools began the school year with a workshop which featured our lessons. They were also featured on an Emmy Award nominated TV program, The God Squad, which is sponsored by the Catholic Diocese. Emails have come from as far away as Japan requesting information about BTS.
Mental health professionals have taken a special interest in our lessons. Last year the New York State Office of Mental Health made "Breaking the Silence" available to all health teachers and ancillary personnel in the state free of charge. We are also happy to report that we have just received an order from the Alabama Department of Mental Health and Retardation for 4,000 of our lesson plans as part of a statewide anti-stigma campaign, one of many out of state orders.
I like to dream of the time when young people will recoil when they hear stigmatizing remarks about mental illness in the same way they respond with disgust to racist or anti-Semitic slurs. And I like to hope that the time will come, too, when people will recognize the early onset of symptoms in themselves and get treatment because they have learned about mental illness in a class at school.
Impossible dream? I don't think so. Clearly from the response we have received we know that educating students about mental illness is an idea whose time has come.
I still remember believing that Doug had an undiagnosed attention deficit disorder. Why he barely focused on anything I said. It got so bad that if I had to tell him something really important, I would have to hold his head to get him to look at me and then over enunciate every word. It was like speaking to someone who was deaf. Even then I wasn't sure that what I had to say was really penetrating that clearly preoccupied brain of his.
And I remember, too, that once he had his first psychotic break and there was no denying there was something very, very wrong, his friends didn't know what to do either. They were frightened and distraught, but no one would give them any information. What's wrong with Doug? A deafening silence because after all, nothing could be revealed. Confidentiality, you know, was the way guidance counselors and school psychologists explained it.
But, of course, there is no going backward. We all have to accept where we are at the moment and look ahead to what we hope will be a better life for ourselves, our family members, and everyone else with a major mental illness. And that brings me to what for me has become a consuming passion: the mission to change attitudes about mental illness by educating all children and teens about these devastating disorders through the schools.
Beginning in 1993 with matching grants from NAMI and NAMI-NYS, I worked with other teachers with mental illness in their families to develop lesson plans on mental illness for three grade levels: upper elementary, middle school, and high school. These lessons humanized serious mental illness. Through sharing our family stories, students learned not just the facts about mental illness, but also the emotional toll these crippling illnesses take on everyone involved.
Elementary school students learned about Lisa whose brother had recently been hospitalized with a serious psychiatric disorder. What, she wondered, had happened to her brother who had always been so close and now spent much of his day locked in his room? And what should she do about classmates who were overheard making fun of her brother and calling him "a mental?"
Middle school students learned about a high achieving high school student who began to unravel during a summer at camp. The aftermath of a fight with another camper took over his life, and what should have been a meaningless scrape over nothing very important became something that preoccupied his every waking hour. He would sue his attacker, he would sue the camp, and he wouldn't rest until justice had been done. His paranoia and obsessive behavior finally came to a head with him cowering in the corner of his room in a psychiatric hospital.
High school students were asked to examine their attitudes and those of their community about mental illness. What words do they associate with mental illness? What impact might this kind of stigmatizing language have on someone with a mental illness? How would it affect their family? How would you and others feel if a group home moved into your community? How would the people in the group home feel? And through discussion and anecdotes students learn the symptoms of schizophrenia and the impact of stigma. They are clearly moved as they hear about a formerly popular young man whose friends thoughtlessly desert him when he develops the symptoms of schizophrenia.
The popularity of these lessons was such that in 1998 they were expanded as part of NAMI's campaign to end discrimination. They now contain posters, games, follow-up activities tied to the general curriculum as well as additional lessons. The posters and games proved to be a particular hit. A cartoon brain with a bandage and an ice pack on its head is at the top of the elementary school poster. A caption beside it reads: "Brains can get sick, but they can also get well again." And "The Brain Game," a competitive board game which rewards stigma busting and penalizes stigmatizing behavior, has been especially popular with middle school students.
Happily the popularity of "Breaking the Silence" (BTS) extends beyond. For example, this past year all health education administrators in the New York Public Schools began the school year with a workshop which featured our lessons. They were also featured on an Emmy Award nominated TV program, The God Squad, which is sponsored by the Catholic Diocese. Emails have come from as far away as Japan requesting information about BTS.
Mental health professionals have taken a special interest in our lessons. Last year the New York State Office of Mental Health made "Breaking the Silence" available to all health teachers and ancillary personnel in the state free of charge. We are also happy to report that we have just received an order from the Alabama Department of Mental Health and Retardation for 4,000 of our lesson plans as part of a statewide anti-stigma campaign, one of many out of state orders.
I like to dream of the time when young people will recoil when they hear stigmatizing remarks about mental illness in the same way they respond with disgust to racist or anti-Semitic slurs. And I like to hope that the time will come, too, when people will recognize the early onset of symptoms in themselves and get treatment because they have learned about mental illness in a class at school.
Impossible dream? I don't think so. Clearly from the response we have received we know that educating students about mental illness is an idea whose time has come.
Thursday, October 20, 2011
Answers From Margaret Ray's Mother
We all remember Margaret Ray who became fodder for the tabloid media for becoming obsessed with talk-show host David Letterman. She repeatedly broke into his home in New Canaan, Conn., camped out on his tennis court and on one occasion stole his Porsche. Ray had schizophrenia like two of her brothers. And like them, she also commit suicide. Her tale was tragic behind all of the kidding. New York City Voices' Editor Danny Frey had the pleasure of meeting Loretta Duvall, Ray's mother, at the Department of Mental Health, Mental Retardation and Alcoholism Service's Seventh Annual Mental Hygiene Awards last year, and the following questions were answered through an Internet correspondence.
Question: What was a major indication to you that something was mentally wrong with your daughter?
Answer: Margaret showed a lack of good judgment in her 18th, 19th and 20th years. She made irresponsible decisions. I attributed this to changes in the family lifestyle: my contested divorce, her entering college, sale of home. I did not recognize this behavior as anything other than a reaction to stress.
Question: After you realized that Margaret had a mental problem, what did you and your family do?
Answer: Margaret was married and showed a strong devotion to her husband at the time. I realized that she needed professional care. I could do nothing. She distanced herself from me and her family. Her husband held me responsible for her behavior. There was very little that I could do. I continued to love her, tolerate her behavior and once took her for counseling. She lived many miles away.
Question: How often did you visit Margaret in the mental hospital?
Answer: Rarely. I did visit at Fairfield Hills, CT and I went to Niantic State Prison, but she refused to see me. I also visited her in Kissimmee, FL Prison. She was in prison hospitals throughout the country.
Question: It seemed like Margaret was very loud and vocal when she was sick (many schizophrenics are quiet and introverted). Do you think someone with schizophrenia would get the necessary treatment as fast if they were quiet and sick?
Answer: I don't know, Dan. It would be an interesting study. I think firmly that people who are mentally ill and commit publicized crimes get lots of attention. The public seems to become titillated about viewing and reading about this. Strange.
Question: Were you afraid that Margaret might take her own life?
Answer: I never thought so. She as a whole was a positive thinker, resourceful and creative.
Question: Describe how you felt the first time you saw Margaret on television in connection with stalking David Letterman.
Answer: I first heard about Margarets escapade when I was notified by the police at my home. I do not recall the very first time I saw her on TV. But I did. Most of the time I was informed of her appearances. I have had copies made of some of the publicity. It was national and international news. Until her death no one publicly defended her (there were several judges and law enforcement people who tried to help). It was a long, long tragedy.
Question: What made you finally agree to take your family's story of schizophrenia to the public, not just Margaret's, but your other children's as well?
Answer: I committed to giving up my privacy (which is dear to me) and my pride (which helped no one) to try to bring the pain, the shame and guilt, the disdain and stigma out into the open. I want to do this with love, respect, facts and figures and mostly education.
Question: What was a major indication to you that something was mentally wrong with your daughter?
Answer: Margaret showed a lack of good judgment in her 18th, 19th and 20th years. She made irresponsible decisions. I attributed this to changes in the family lifestyle: my contested divorce, her entering college, sale of home. I did not recognize this behavior as anything other than a reaction to stress.
Question: After you realized that Margaret had a mental problem, what did you and your family do?
Answer: Margaret was married and showed a strong devotion to her husband at the time. I realized that she needed professional care. I could do nothing. She distanced herself from me and her family. Her husband held me responsible for her behavior. There was very little that I could do. I continued to love her, tolerate her behavior and once took her for counseling. She lived many miles away.
Question: How often did you visit Margaret in the mental hospital?
Answer: Rarely. I did visit at Fairfield Hills, CT and I went to Niantic State Prison, but she refused to see me. I also visited her in Kissimmee, FL Prison. She was in prison hospitals throughout the country.
Question: It seemed like Margaret was very loud and vocal when she was sick (many schizophrenics are quiet and introverted). Do you think someone with schizophrenia would get the necessary treatment as fast if they were quiet and sick?
Answer: I don't know, Dan. It would be an interesting study. I think firmly that people who are mentally ill and commit publicized crimes get lots of attention. The public seems to become titillated about viewing and reading about this. Strange.
Question: Were you afraid that Margaret might take her own life?
Answer: I never thought so. She as a whole was a positive thinker, resourceful and creative.
Question: Describe how you felt the first time you saw Margaret on television in connection with stalking David Letterman.
Answer: I first heard about Margarets escapade when I was notified by the police at my home. I do not recall the very first time I saw her on TV. But I did. Most of the time I was informed of her appearances. I have had copies made of some of the publicity. It was national and international news. Until her death no one publicly defended her (there were several judges and law enforcement people who tried to help). It was a long, long tragedy.
Question: What made you finally agree to take your family's story of schizophrenia to the public, not just Margaret's, but your other children's as well?
Answer: I committed to giving up my privacy (which is dear to me) and my pride (which helped no one) to try to bring the pain, the shame and guilt, the disdain and stigma out into the open. I want to do this with love, respect, facts and figures and mostly education.
Friday, October 14, 2011
One Patient's Journey to Mental Wellness
I remember my first visit to the Park Slope Center for Mental Health. As I rode the F train to the 7th Avenue station in Brooklyn, voices I heard then in my head were busy warning me to be fearful of two men who shared the train car with me. These voices told me the men were staring at me and planning to do me harm. Then suddenly the train pulled into my station. I didn't move, waiting to see whether these two men were planning on departing the train. I waited almost too long in fact as I had to struggle to keep the train doors open to make it out onto the subway platform. The two men didn't follow. The voices roared with laughter at my clumsy escape from this danger, and they began to recite a litany of demeaning and horrid statements to me.
This happened on a cool, crisp spring day in 1991. As I tell you my experience, you will soon understand why this event seems like ancient history to me today.
Upon my arrival at 464 Ninth Street in the Prospect Park section of Brooklyn, I was convinced I had been given the wrong address. I checked the address written on the paper in my shirt pocket several times before I approached, hesitantly, the four-story brownstone with the address on its door. After thirty years in the mental health system, I had never seen any mental health center or clinic that looked even remotely like this building.
Once I entered the building, I was sure I was in the wrong place. The foyer, alive with plants, and a smiling, friendly woman couldn't possibly be the reception area of a mental health center. In fact, the entire look and feel of the reception room, hallway, rising staircase, and later the offices, was totally "un-clinic-like!" Instead, Park Slope Center for Mental Health offered an ambiance resembling someone's home; and not just anyone's; someone very special's.
Despite all this, I found this was the right place. I had an appointment at 2 p.m. and I was early, I was told by a friendly, smiling woman named Ann.
While I waited to be seen by someone, my eyes roamed over the walls, Victorian-style fireplace, mantel, and a majestic, intricately carved wooden ceiling which had been carefully, hand crafted by an artisan from another time. For some time, in fact, I was convinced I had been transported back myself to a turn-of-the-century sitting room where I sat on an antique old wooden bench, enjoying the visions of historic Brooklyn prints on the walls and aged photos arranged on the fireplace mantel and beautifully framed in all sorts of frameworks from days long ago.
Jolted back to my reality by the sudden return of the voices which had been a part of my life since I was 15 years old and diagnosed a paranoid schizophrenic with psychotic symptoms, including auditory hallucinations, I began to look back at the more than thirty years I had spent living in state mental hospitals, halfway houses, community residences, or homeless.
I had just been released from Manhattan Psychiatric Center on Ward's Island, where I had spent close to two years. I had spent time too in Harlem Valley Psychiatric Center in Wingdale, New York, before I was discharged from my latest attempt at suicide; a serious attempt to jump from a thirty-story building in Manhattan, followed by numerous efforts to hang myself in these hospitals. The voices I had heard since I was 15 years old had commanded me to jump, and as I sat waiting to be seen, these voices reminded me that I had failed again. They told me too that I wouldn't fail the next time, and they had already started making plans for my next suicide.
"Hello, Mr. Steele. My name is Dr. Rita Seiden."
These words and the woman who spoke them startled me and the voices only I could hear. I looked up. She smiled, looking me directly in the eyes, and invited me into her office.
As I entered, the look and the feel I had earlier described about this place were undoubtedly an expression of this person. She was clearly its architect because her office reflected the same warmth and "home-like" ambiance, but even more so. As time would pass I would realize why I sensed it more intently in her room. I had been invited into the "heart" of this place, and I truly felt like an important guest and not a patient from the first visit to Park Slope Center for Mental Health. Soon I would discover most patients of this mental health center felt the same way, like guests. Never before had they been treated with the kind of respect, care, sensitivity, and support which are the living ornaments of this mental health center. From Board Chairman, to Executive Director, to reception staff, this is how these professionals approach their work.
Little did I know then that at this special place some very important work would be done. I would actually reclaim my life from my paranoid schizophrenia, but not so fast, nor easy, or without hard, hard work, and several relapses. Yes, and even one more attempt to escape treatment and destroy my life.
I almost wasn't welcomed back after I had ran away and severed therapy which had been threatening, direct, and uncompromising from the start. Once I had left a doctor, or a place, I had never returned during the more than thirty years I have been in the system.
I returned this time. The only explanation I can offer is that the "heart" which I felt from the first day I visited Park Slope Center for Mental Health overcame the direct wishes and demands of the schizophrenic voices which had commanded my life's activities from the day they had arrived in my adolescence.
This accomplishment, by itself, was life-altering, and we haven't even got to the best part yet. Much more hard work would separate this first breakthrough and the next, and there would be more close calls, but in 1994, I was able to tell my doctor the truth: I was not taking the antipsychotic drugs they were prescribing for me because of the side effects. My not taking the medicine was not new. My ability to claw myself through the paranoia, delusional thinking, and the frightening, warning voices within my mind, to reach out and tell my doctor the truth was totally new. For once, my delusional voices and extreme paranoia had been beaten back. I had trusted someone, for the first time since I was 15 years old. This was a major breakthrough in my treatment and a change in direction for my life. At the time, I had no idea of exactly what unknown and miraculous factors I was allowing myself to experience. By telling the truth, I had given voice only to the overture of even greater things to come.
In 1993, I was prescribed a new antipsychotic; Risperdal. My doctor told me it was a new type of medication which produced far less side effects than the twelve or more I had endured over the past thirty years.
With my delusional voices still influencing me, and at full auditory volume, I was asked to honestly give this medication a chance. If I didn't want to take it, I didn't have to lie about taking it. There would be no reprisals, I was told. Even with these promises, the voices went straight to work trying to stop me from taking the medicine. But, somehow, I did. One day at a time; winning one battle over my delusions one day at a time. My new found trust in someone was my anchor during this period. Then, in early 1995, the voices stopped completely. Seven months after I had started taking the Risperdal the voices had left me.
At first, I terrified. I began to panic. I wanted them to come back. I was alone for the first time in my life. I won't tell you that it was easy during the next several months as I had to fight to stay outside my schizophrenia, taking my Risperdal, and starting to take control of my life. During this time, I would move into the first independent apartment I have ever lived in alone. I would learn how to live alone without voices and other people being present, and I have even come to enjoy my time alone.
Today--a mere six years since my subway ride and first visit to this special place located in the Prospect Park area of Brooklyn--I am actively involved with helping other guests like myself as I have become a consumer advocate with the Park Slope Center for Mental Health. I coordinate Consumer-Run Programs here. These programs include two highly respected local and state recognized consumer initiatives: the New York Mental Health Voter Empowerment Project, which has registered close to 20,000 mental health recipients in Greater New York City during the past three years, many for the first times in their lives, and New York City Voices: A Consumer Journal for Mental Health Advocacy, a completely consumer-run and directed journal which gives voice to others like myself who have been silenced by their illnesses.
But, most importantly, I have genuine relationships with people based on realities and not delusions. I live independently in the community for the first time in my life, and I am able to look in the mirror and see the me I never got a chance to meet or know before. And this is only the beginning.
This happened on a cool, crisp spring day in 1991. As I tell you my experience, you will soon understand why this event seems like ancient history to me today.
Upon my arrival at 464 Ninth Street in the Prospect Park section of Brooklyn, I was convinced I had been given the wrong address. I checked the address written on the paper in my shirt pocket several times before I approached, hesitantly, the four-story brownstone with the address on its door. After thirty years in the mental health system, I had never seen any mental health center or clinic that looked even remotely like this building.
Once I entered the building, I was sure I was in the wrong place. The foyer, alive with plants, and a smiling, friendly woman couldn't possibly be the reception area of a mental health center. In fact, the entire look and feel of the reception room, hallway, rising staircase, and later the offices, was totally "un-clinic-like!" Instead, Park Slope Center for Mental Health offered an ambiance resembling someone's home; and not just anyone's; someone very special's.
Despite all this, I found this was the right place. I had an appointment at 2 p.m. and I was early, I was told by a friendly, smiling woman named Ann.
While I waited to be seen by someone, my eyes roamed over the walls, Victorian-style fireplace, mantel, and a majestic, intricately carved wooden ceiling which had been carefully, hand crafted by an artisan from another time. For some time, in fact, I was convinced I had been transported back myself to a turn-of-the-century sitting room where I sat on an antique old wooden bench, enjoying the visions of historic Brooklyn prints on the walls and aged photos arranged on the fireplace mantel and beautifully framed in all sorts of frameworks from days long ago.
Jolted back to my reality by the sudden return of the voices which had been a part of my life since I was 15 years old and diagnosed a paranoid schizophrenic with psychotic symptoms, including auditory hallucinations, I began to look back at the more than thirty years I had spent living in state mental hospitals, halfway houses, community residences, or homeless.
I had just been released from Manhattan Psychiatric Center on Ward's Island, where I had spent close to two years. I had spent time too in Harlem Valley Psychiatric Center in Wingdale, New York, before I was discharged from my latest attempt at suicide; a serious attempt to jump from a thirty-story building in Manhattan, followed by numerous efforts to hang myself in these hospitals. The voices I had heard since I was 15 years old had commanded me to jump, and as I sat waiting to be seen, these voices reminded me that I had failed again. They told me too that I wouldn't fail the next time, and they had already started making plans for my next suicide.
"Hello, Mr. Steele. My name is Dr. Rita Seiden."
These words and the woman who spoke them startled me and the voices only I could hear. I looked up. She smiled, looking me directly in the eyes, and invited me into her office.
As I entered, the look and the feel I had earlier described about this place were undoubtedly an expression of this person. She was clearly its architect because her office reflected the same warmth and "home-like" ambiance, but even more so. As time would pass I would realize why I sensed it more intently in her room. I had been invited into the "heart" of this place, and I truly felt like an important guest and not a patient from the first visit to Park Slope Center for Mental Health. Soon I would discover most patients of this mental health center felt the same way, like guests. Never before had they been treated with the kind of respect, care, sensitivity, and support which are the living ornaments of this mental health center. From Board Chairman, to Executive Director, to reception staff, this is how these professionals approach their work.
Little did I know then that at this special place some very important work would be done. I would actually reclaim my life from my paranoid schizophrenia, but not so fast, nor easy, or without hard, hard work, and several relapses. Yes, and even one more attempt to escape treatment and destroy my life.
I almost wasn't welcomed back after I had ran away and severed therapy which had been threatening, direct, and uncompromising from the start. Once I had left a doctor, or a place, I had never returned during the more than thirty years I have been in the system.
I returned this time. The only explanation I can offer is that the "heart" which I felt from the first day I visited Park Slope Center for Mental Health overcame the direct wishes and demands of the schizophrenic voices which had commanded my life's activities from the day they had arrived in my adolescence.
This accomplishment, by itself, was life-altering, and we haven't even got to the best part yet. Much more hard work would separate this first breakthrough and the next, and there would be more close calls, but in 1994, I was able to tell my doctor the truth: I was not taking the antipsychotic drugs they were prescribing for me because of the side effects. My not taking the medicine was not new. My ability to claw myself through the paranoia, delusional thinking, and the frightening, warning voices within my mind, to reach out and tell my doctor the truth was totally new. For once, my delusional voices and extreme paranoia had been beaten back. I had trusted someone, for the first time since I was 15 years old. This was a major breakthrough in my treatment and a change in direction for my life. At the time, I had no idea of exactly what unknown and miraculous factors I was allowing myself to experience. By telling the truth, I had given voice only to the overture of even greater things to come.
In 1993, I was prescribed a new antipsychotic; Risperdal. My doctor told me it was a new type of medication which produced far less side effects than the twelve or more I had endured over the past thirty years.
With my delusional voices still influencing me, and at full auditory volume, I was asked to honestly give this medication a chance. If I didn't want to take it, I didn't have to lie about taking it. There would be no reprisals, I was told. Even with these promises, the voices went straight to work trying to stop me from taking the medicine. But, somehow, I did. One day at a time; winning one battle over my delusions one day at a time. My new found trust in someone was my anchor during this period. Then, in early 1995, the voices stopped completely. Seven months after I had started taking the Risperdal the voices had left me.
At first, I terrified. I began to panic. I wanted them to come back. I was alone for the first time in my life. I won't tell you that it was easy during the next several months as I had to fight to stay outside my schizophrenia, taking my Risperdal, and starting to take control of my life. During this time, I would move into the first independent apartment I have ever lived in alone. I would learn how to live alone without voices and other people being present, and I have even come to enjoy my time alone.
Today--a mere six years since my subway ride and first visit to this special place located in the Prospect Park area of Brooklyn--I am actively involved with helping other guests like myself as I have become a consumer advocate with the Park Slope Center for Mental Health. I coordinate Consumer-Run Programs here. These programs include two highly respected local and state recognized consumer initiatives: the New York Mental Health Voter Empowerment Project, which has registered close to 20,000 mental health recipients in Greater New York City during the past three years, many for the first times in their lives, and New York City Voices: A Consumer Journal for Mental Health Advocacy, a completely consumer-run and directed journal which gives voice to others like myself who have been silenced by their illnesses.
But, most importantly, I have genuine relationships with people based on realities and not delusions. I live independently in the community for the first time in my life, and I am able to look in the mirror and see the me I never got a chance to meet or know before. And this is only the beginning.
Tuesday, October 11, 2011
The Procreative Urge
Walking through Central Park I can’t help but think of babies. Moms and nannies push infants in strollers with a happy gleam in their eyes. I feel a silent moan ooze from my empty womb as my biological clock ticks. I get this baby urge every month or so, and it lasts from one hour up to one week. My desire to be a mother is becoming ever stronger as I near my thirtieth birthday.
There are many things for me to consider first. Although I’ve learned to handle my depression pretty well -- it is only with the help of my therapy sessions, Prozac and Wellbutrin. I’ve been on the meds for like two years now and they have helped me tremendously. But now that I’m thinking of becoming a mom -- I face the reality of having to go off medications to ensure a healthy pregnancy.
My rational side noses in and reminds me that I’m jumping the gun. I need to graduate college before I have a baby. My husband and I need to save money. We need to move out of the city. We need, we need, we need.
Yes, I realize it is not the perfect time for my husband and I to have a child yet. I know we would like to have the conditions just right, but I also know that we could end up waiting forever for the “perfect” conditions. I feel emotionally ready to have that new life inside of me, growing, feeding within me. Then I question my motives. Is the baby urge just the desire to be impregnated with some kind of new life? An urge to be filled with new possibility and potential? Perhaps it is an impulse to be filled with new creative power, a new story, or a new article?
No, I know it is more than that. I want someone to depend on me. I am ready to love and support another life.
With my desire to get pregnant one day in mind, my doctor and I decided to try lowering my dosage to see how I would react. My depression came back fast and strong. The old suicidal thoughts told me that any stress or challenge should cause me to just give up and die. It was back to regular dosage for me. I had to face the fact that maybe I’d never be able to go off medication. What about when my husband and I try to get pregnant?
There are no proven side effects on an unborn baby from the meds I’m taking, but why take a chance? My psychiatrist feels it’s best to go off my meds a month before trying to get pregnant and stay off them for at least the first trimester of pregnancy. Will I be able to stop medication and still feel okay?
My doctor thinks that the excitement of getting pregnant should be enough to keep me from feeling too depressed or hopeless. That sounds reasonable, but then other questions form in my mind. What if I get pregnant before I’m ready -- when I’m still on Prozac? What then? I always thought I could put off thinking about such matters, but what happens if the future turns out to be sooner than later? How will I face it? Will I be strong enough? Will I ever not need to medicate?
And then the deeper questions surface. Will I be a good mother? Will I pass on my illness to our children? I know I’ll be a good mom, but...wait, how can I know?
In session, I explore my questions. I realize that I’m obsessing again about my need for perfection. I’ve obsessed about my body, my beauty and my intellect. Now I’m obsessing about being the “perfect” mom. I’ve learned to face my desire to be the best in other areas of my life, and this awareness of my obsessiveness helps me to get past it. I will get past this, too. It’s good I’m facing a potential problem before it even occurs. There is no perfect mother. Just mothers doing their best and loving their children all that they can.
I do my practice now. Prepare myself. I am loving myself and accepting myself as much as possible. I will continue to grow in love and allow myself to be human. And I will be a wonderful mother. Not perfect, but very loving and forgiving -- as I have learned to be towards myself. And truthful at all times. And attentive. For my children, and God willing, for myself.
Ah. There it is again. The baby urge. The warmth flowing through my body and mind and soul. For now, I quench the feeling by writing, by giving birth to new stories and new ideas.
I give birth every day. I am nurtured and give nurturance. Today, I express my creative urges with words, letting them flow onto paper as leaves tumble through wheels of strollers in the park. Tomorrow, it may be my own womb that hums ands rolls and gurgles. It will gurgle out loud one day. Until then, I write. I type my words upon computer keys and quiet my urge to be the mother of new things.
The Procreative Urge
By Sheila Hageman
There are many things for me to consider first. Although I’ve learned to handle my depression pretty well -- it is only with the help of my therapy sessions, Prozac and Wellbutrin. I’ve been on the meds for like two years now and they have helped me tremendously. But now that I’m thinking of becoming a mom -- I face the reality of having to go off medications to ensure a healthy pregnancy.
My rational side noses in and reminds me that I’m jumping the gun. I need to graduate college before I have a baby. My husband and I need to save money. We need to move out of the city. We need, we need, we need.
Yes, I realize it is not the perfect time for my husband and I to have a child yet. I know we would like to have the conditions just right, but I also know that we could end up waiting forever for the “perfect” conditions. I feel emotionally ready to have that new life inside of me, growing, feeding within me. Then I question my motives. Is the baby urge just the desire to be impregnated with some kind of new life? An urge to be filled with new possibility and potential? Perhaps it is an impulse to be filled with new creative power, a new story, or a new article?
No, I know it is more than that. I want someone to depend on me. I am ready to love and support another life.
With my desire to get pregnant one day in mind, my doctor and I decided to try lowering my dosage to see how I would react. My depression came back fast and strong. The old suicidal thoughts told me that any stress or challenge should cause me to just give up and die. It was back to regular dosage for me. I had to face the fact that maybe I’d never be able to go off medication. What about when my husband and I try to get pregnant?
There are no proven side effects on an unborn baby from the meds I’m taking, but why take a chance? My psychiatrist feels it’s best to go off my meds a month before trying to get pregnant and stay off them for at least the first trimester of pregnancy. Will I be able to stop medication and still feel okay?
My doctor thinks that the excitement of getting pregnant should be enough to keep me from feeling too depressed or hopeless. That sounds reasonable, but then other questions form in my mind. What if I get pregnant before I’m ready -- when I’m still on Prozac? What then? I always thought I could put off thinking about such matters, but what happens if the future turns out to be sooner than later? How will I face it? Will I be strong enough? Will I ever not need to medicate?
And then the deeper questions surface. Will I be a good mother? Will I pass on my illness to our children? I know I’ll be a good mom, but...wait, how can I know?
In session, I explore my questions. I realize that I’m obsessing again about my need for perfection. I’ve obsessed about my body, my beauty and my intellect. Now I’m obsessing about being the “perfect” mom. I’ve learned to face my desire to be the best in other areas of my life, and this awareness of my obsessiveness helps me to get past it. I will get past this, too. It’s good I’m facing a potential problem before it even occurs. There is no perfect mother. Just mothers doing their best and loving their children all that they can.
I do my practice now. Prepare myself. I am loving myself and accepting myself as much as possible. I will continue to grow in love and allow myself to be human. And I will be a wonderful mother. Not perfect, but very loving and forgiving -- as I have learned to be towards myself. And truthful at all times. And attentive. For my children, and God willing, for myself.
Ah. There it is again. The baby urge. The warmth flowing through my body and mind and soul. For now, I quench the feeling by writing, by giving birth to new stories and new ideas.
I give birth every day. I am nurtured and give nurturance. Today, I express my creative urges with words, letting them flow onto paper as leaves tumble through wheels of strollers in the park. Tomorrow, it may be my own womb that hums ands rolls and gurgles. It will gurgle out loud one day. Until then, I write. I type my words upon computer keys and quiet my urge to be the mother of new things.
The Procreative Urge
By Sheila Hageman
Monday, October 10, 2011
A Pregnant Pause: Anti-Psychotic Medication And Growing A Baby
Whenever I attended a NAMI or NARSAD conference during the past ten years, I asked the medical panel the same question—albeit a hypothetical one for me at the time: Is it safe to take anti-psychotic medication if a woman is pregnant? Since the moment in April 1990 when I realized that I needed to stay on my medication for schizophrenia, I’ve feared getting pregnant while on Trilafon. It’s loomed like a teetering boulder poised atop a steep cliff and ready to roll who-knew-where. Would a developing fetus absorbing my prescribed pill be damaged at birth, harbor a time bomb of unknown suffering years down the road, or, my hope beyond hope, actually be healthy?
Until 1998, the responses I received at the conferences remained remarkably consistent with two replies: 1. Not much research has been done in this area, so not much is known; 2. The conventional wisdom is for women to go off their medications at least from conception until the first trimester when the major organs develop.
Great, I thought, I had finally accepted that I needed to stay on my medication only to find out if I wanted to grow a baby, I’d need to go off it. That thought scared me more than having a baby with birth defects. And it wasn’t just a weekend medication holiday—conceiving could take anywhere from six months to a year. Underneath my question sat relief that I didn’t really have to face the issue.
Then in 1998, I heard something different. I attended a NARSAD conference, asked my question of the panel and received the usual replies. But immediately following the session, three women walked over to speak to me. They all had daughters who were diagnosed with schizophrenia and who had given birth to healthy children. Two of the daughters became pregnant while on medication, and one daughter went off her medication but became psychotic after the baby was born.
Soon after the conference, I discovered that my gynecologist had worked with psychiatric patients on Mellaril or Haldol during her residency. She told me that these patients’ babies had been born healthy. According to my gynecologist, the most difficult pregnancies occurred when women went off their medications. “Being psychotic is more harmful to a fetus than anti-psychotic drugs,” she said.
She went on to explain that there usually was a difference in thinking between the ob-gyns and the psychiatrists—the ob-gyns preferred women to stay on their medication and the psychiatrists advised women to go off it initially. But, she explained, the differences between their thinking made sense. Since the women remained under their psychiatrists’ care, if the psychiatrists prescribed medication and the babies were born with birth defects, the psychiatrists were at risk for being liable. The ob-gyns were not. From the ob-gyn perspective, the psychiatrists in fact had little to risk because the ob-gyns knew they were delivering healthy babies with mothers on medication, and saw the distress to the fetus when a mother became psychotic going off her meds. Psychiatrists, who didn’t witness actual prenatal and birth experiences to assuage their thinking, tended to act with caution.
The information from my ob-gyn combined with the grandmothers’ stories left me feeling more helpful about conception and being pregnant while continuing my daily swallow of Trilafon. The possibility of my becoming a biological mother, however, remained a hypothetical issue.
Until a year later. I had finally entered a loving relationship with a man who wanted to marry me and have children. I knew little research had been conducted on anti-psychotic medication and pregnancy, primarily because researchers were reluctant to experiment with human fetuses and also because the number of women on these medications who become pregnant have been relatively few over the years. Still, I tried in earnest to discover what was known. Some studies were done with Haldol and rats, but I found virtually no information for Trilafon or any of the newer anti-psychotics.
When I married and decided to try to have a baby, my own psychiatrist advised me to go off my medication before conceiving and throughout the first trimester. But by then some younger psychiatrists were rethinking that caveat. The new approach believed that the greater risk involved stopping medication. More and more often doctors told me that my age, 40 at the time, was a greater risk for a healthy pregnancy than taking medication. I was elated to have encountered such a mainstream risk factor.
My husband and I decided to try and conceive while I continued to take Trilafon. When, much to our delight, I became pregnant, we faced one more hurdle we hadn’t anticipated. Our genetic counselor raised the possibility that my Trilafon dosage, which was effective with my pre-pregnancy blood levels, might not work when my blood volume increased during the second trimester. Fortunately, my regular dosage continued to work throughout my entire pregnancy and postpartum period.
Growing a baby while taking anti-psychotic medication can be a reality. I have only to hold my two-month-old daughter in my arms to know this is true—and how lucky I am to have benefited from both the serendipity of hearing other women’s experiences and the changing attitudes within the psychiatric community.
Until 1998, the responses I received at the conferences remained remarkably consistent with two replies: 1. Not much research has been done in this area, so not much is known; 2. The conventional wisdom is for women to go off their medications at least from conception until the first trimester when the major organs develop.
Great, I thought, I had finally accepted that I needed to stay on my medication only to find out if I wanted to grow a baby, I’d need to go off it. That thought scared me more than having a baby with birth defects. And it wasn’t just a weekend medication holiday—conceiving could take anywhere from six months to a year. Underneath my question sat relief that I didn’t really have to face the issue.
Then in 1998, I heard something different. I attended a NARSAD conference, asked my question of the panel and received the usual replies. But immediately following the session, three women walked over to speak to me. They all had daughters who were diagnosed with schizophrenia and who had given birth to healthy children. Two of the daughters became pregnant while on medication, and one daughter went off her medication but became psychotic after the baby was born.
Soon after the conference, I discovered that my gynecologist had worked with psychiatric patients on Mellaril or Haldol during her residency. She told me that these patients’ babies had been born healthy. According to my gynecologist, the most difficult pregnancies occurred when women went off their medications. “Being psychotic is more harmful to a fetus than anti-psychotic drugs,” she said.
She went on to explain that there usually was a difference in thinking between the ob-gyns and the psychiatrists—the ob-gyns preferred women to stay on their medication and the psychiatrists advised women to go off it initially. But, she explained, the differences between their thinking made sense. Since the women remained under their psychiatrists’ care, if the psychiatrists prescribed medication and the babies were born with birth defects, the psychiatrists were at risk for being liable. The ob-gyns were not. From the ob-gyn perspective, the psychiatrists in fact had little to risk because the ob-gyns knew they were delivering healthy babies with mothers on medication, and saw the distress to the fetus when a mother became psychotic going off her meds. Psychiatrists, who didn’t witness actual prenatal and birth experiences to assuage their thinking, tended to act with caution.
The information from my ob-gyn combined with the grandmothers’ stories left me feeling more helpful about conception and being pregnant while continuing my daily swallow of Trilafon. The possibility of my becoming a biological mother, however, remained a hypothetical issue.
Until a year later. I had finally entered a loving relationship with a man who wanted to marry me and have children. I knew little research had been conducted on anti-psychotic medication and pregnancy, primarily because researchers were reluctant to experiment with human fetuses and also because the number of women on these medications who become pregnant have been relatively few over the years. Still, I tried in earnest to discover what was known. Some studies were done with Haldol and rats, but I found virtually no information for Trilafon or any of the newer anti-psychotics.
When I married and decided to try to have a baby, my own psychiatrist advised me to go off my medication before conceiving and throughout the first trimester. But by then some younger psychiatrists were rethinking that caveat. The new approach believed that the greater risk involved stopping medication. More and more often doctors told me that my age, 40 at the time, was a greater risk for a healthy pregnancy than taking medication. I was elated to have encountered such a mainstream risk factor.
My husband and I decided to try and conceive while I continued to take Trilafon. When, much to our delight, I became pregnant, we faced one more hurdle we hadn’t anticipated. Our genetic counselor raised the possibility that my Trilafon dosage, which was effective with my pre-pregnancy blood levels, might not work when my blood volume increased during the second trimester. Fortunately, my regular dosage continued to work throughout my entire pregnancy and postpartum period.
Growing a baby while taking anti-psychotic medication can be a reality. I have only to hold my two-month-old daughter in my arms to know this is true—and how lucky I am to have benefited from both the serendipity of hearing other women’s experiences and the changing attitudes within the psychiatric community.
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