Ward Stories
A column organized by Dan Frey, Interim Poetry Editor
For this winter 2015 edition, we feature three poets, each with their own style and message. R. Martinez Jr. makes addiction real for his readers in Love is a Drug. Paul Chipkin grows into a peaceful man through his poem I Am That I Am. Beryl Khabeer explains that our soul is beyond the material world in her poem Brooching SOUL. I hope that you enjoy as much as I have.
Love is a Drug
By R. Martinez Jr.
I need a quick fix
I'm addicted to you
feeling high feeling low
what am I to do?
an aphrodesiac
affection in a sack
I can feel you in my veins
but Im stuck without a track
I'm drowning in a bottle
of absolute sorrow
if I cant have you now
there will be no tomorrow
Pure euphoria
when I'm with you its ecstasy
I take so much of you in
that I can't even see
I might have to quit cold turkey
I might have to ween
Love is a drug
you already proved it to me.
I Am That I Am
By Paul Chipkin
I am the very one
Who did those things
That I can be the one
Who is growing into
Who I am today
Because I am who I was
And have seen complexity
As I strengthened
Growing
And making peace better.
Love appears here,
Sprouts anew there…
Goodness greets me
In response to faith.
Divinely-inspired liberties
And holy trust
Bring me to pray
That those
Who I hurt along the way
Are exercising forgiveness,
(Believing in that eases my burden
as I stand in this present moment
loving my fellows with developing confidence).
Having fought off hoplessness,
I hold an optimistic vision
For the salvation of individuals.
Now, as it always was,
I am grateful for all that I have!
Brooching SOUL
By Beryl Khabeer, M.A.
The body is just the shell I live in.
I am no sensation; I am no senses.
I am a living S O U L.
The beat of my environ touch my true self,
Touch my S O U L
And echo through the senses.
Knowing and using the senses
For only the senses’ sake
Is to abridge Creation and Creator.
Monday, December 15, 2014
Wellness Fair to Enhance Peer Health
Wellness
Fair to Enhance Peer Health
According
to data from The National Survey on Drug Use and Health (NSDUH),
adults
aged 18 or older with any mental illness (AMI) or major depressive
episode (MDE) were more likely than adults without these mental
illnesses to have high blood pressure, asthma, diabetes, heart
disease, and stroke. Adults with serious mental illness (SMI) were
more likely than adults without SMI to have high blood pressure,
asthma, and stroke. Those with AMI, SMI, or MDE were more likely than
adults without these mental illnesses to use an emergency room and to
be hospitalized.
Our
peers therefore need education and screenings on physical health
issues to improve their overall health and quality of life. With that
in mind, the New York City Department of Health and Mental Hygiene's
division
of mental hygiene's Office of Consumer Affairs organized a Wellness
Fair to kick off Wellness Week.
On
September 12th
from 10AM to 4PM, attendees were treated to nutrition, yoga, and
drumming workshops, health screenings for blood sugar, blood pressure
and body mass index, resource tables, exercise and fitness, smoking
cessation, social and cultural activities, education resources,
diabetes management and a healthy and satisfying lunch.
For
more information, you can contact the Office of Consumer Affairs via
phone or email:
347-396-7194
and bnovack@health.nyc.gov
Self-Direction in Medicaid for Well-being and Empowerment
Self-Direction in Medicaid for Well-being and Empowerment
By Briana Gilmore, Public Policy and Advocacy Director, NYAPRS
Self-direction is a strategy in organizing and delivering Medicaid-funded services and community supports that can dramatically enhance opportunities for people living with disabilities. The process transfers some of the funds typically afforded through Medicaid payments directly to the consumer, who develops a plan to utilize the money for services and supports for increased engagement and well-being. Hundreds of thousands of people experiencing developmental disabilities already utilize the approach, and many states have implemented or are seeking pilots to bridge the method to the behavioral health recovery community.
In New York, the Office of Mental Health (OMH) selected self-direction as a new service to implement through a Health and Recovery Plan (HARP) for Medicaid recipients with enhanced BH (behavioral health) needs. Implementing the program thoughtfully will take some careful planning; therefore the program will be piloted for a few years before being brought to scale statewide as a benefit for eligible recipients.
Any self-direction model must take into consideration the particular recovery needs of the community for whom it’s modeled. For people with physical needs, funds are often self-directed to health aides, house modifications, or other consistent supports. A model to support the behavioral health needs of a community must take into account social needs that span employment, education, community inclusion, well-being, and traditional rehab supports. New York is looking at an approach that would allow recipients to buy services like habilitation (services that help a person learn, keep, or improve skills and functional abilities that they may not be developing normally) and supported employment, but also direct funds to community wellness supports like gym memberships and yoga classes, college classes and bus passes.
The implications of self-direction are vast; it is the most flexible way for consumers to take ownership over their recovery and invest in chosen supports. The success of a self-directed recovery plan is largely dependent on the relationship between each recipient and a support broker, who is a chosen navigator that helps to maximize an individual budget. A recovery plan is based on current capacities and supports, and incorporates wellness goals for overall health. A recipient uses the plan as a tool to guide their spending. Purchases of traditional services and community supports are now typically made with smart debit cards that can track allowable services and be refilled directly by the payer.
There are many considerations that go into creating a self-directed design that benefits people with BH needs. The plan must take into account accessibility and enrollment processes, ensure culturally competent approaches, and allow for creative community-based solutions for enhanced well-being. The design must also plan for a relationship between a recipient-driven recovery plan, and a treatment plan that is supported by a Medicaid Managed Care Organization. Support brokers—who in most models are peer specialists or recovery-trained life coaches—should be supported by an infrastructure that can foster innovation and adaptiveness within the model. And ultimately, the financial process has to offer an efficient transfer of funds from the state Medicaid program.
I’ve been involved in a planning process with NYAPRS and the Columbia Center for Practice Innovations to help OMH develop a draft model for BH self-direction. The team has worked for eight months to review research, meet with experts in the field from around the country, and engage Medicaid recipients, DOHMH (dept. health mental hygiene), and other stakeholders to develop a strategy for implementation. The process will continue in the coming months as OMH explores the best framework and negotiates the process with other state agencies, Managed Care Organizations, and recipients.
NYAPRS (New York Association for Psych Rehab Services) has been advocating for a self-directed model in New York for nearly a decade. It’s exciting to know that the model could be offered to tens of thousands of Medicaid recipients with BH needs in the coming years. The state agencies, particularly through the Medicaid Redesign process, recognize that innovative approaches like self-direction can contribute to long-term savings and system benefits. These gains will be as a result of quality of life improvements like reduced hospitalizations and increased community engagement, as well as better overall satisfaction with the Medicaid program. A New York State pilot will include a strong research component to look at how recipients of different ages, backgrounds, and with different geographic living settings use and benefit from self-direction.
Barriers do remain, particularly in the appropriate financing of the approach. It’s also essential that appropriate protections be in place for both consumers and insurance companies before the design is implemented as a standard benefit. The design may provide a truly fundamental shift in Medicaid programming and consumer rights, if stakeholders on both sides continue to work together to actively improve the design through emerging best practices.
Look for opportunities in your area to participate in a self-direction pilot in 2015, as well as information about how you can get involved in the state’s planning process.
By Briana Gilmore, Public Policy and Advocacy Director, NYAPRS
Self-direction is a strategy in organizing and delivering Medicaid-funded services and community supports that can dramatically enhance opportunities for people living with disabilities. The process transfers some of the funds typically afforded through Medicaid payments directly to the consumer, who develops a plan to utilize the money for services and supports for increased engagement and well-being. Hundreds of thousands of people experiencing developmental disabilities already utilize the approach, and many states have implemented or are seeking pilots to bridge the method to the behavioral health recovery community.
In New York, the Office of Mental Health (OMH) selected self-direction as a new service to implement through a Health and Recovery Plan (HARP) for Medicaid recipients with enhanced BH (behavioral health) needs. Implementing the program thoughtfully will take some careful planning; therefore the program will be piloted for a few years before being brought to scale statewide as a benefit for eligible recipients.
Any self-direction model must take into consideration the particular recovery needs of the community for whom it’s modeled. For people with physical needs, funds are often self-directed to health aides, house modifications, or other consistent supports. A model to support the behavioral health needs of a community must take into account social needs that span employment, education, community inclusion, well-being, and traditional rehab supports. New York is looking at an approach that would allow recipients to buy services like habilitation (services that help a person learn, keep, or improve skills and functional abilities that they may not be developing normally) and supported employment, but also direct funds to community wellness supports like gym memberships and yoga classes, college classes and bus passes.
The implications of self-direction are vast; it is the most flexible way for consumers to take ownership over their recovery and invest in chosen supports. The success of a self-directed recovery plan is largely dependent on the relationship between each recipient and a support broker, who is a chosen navigator that helps to maximize an individual budget. A recovery plan is based on current capacities and supports, and incorporates wellness goals for overall health. A recipient uses the plan as a tool to guide their spending. Purchases of traditional services and community supports are now typically made with smart debit cards that can track allowable services and be refilled directly by the payer.
There are many considerations that go into creating a self-directed design that benefits people with BH needs. The plan must take into account accessibility and enrollment processes, ensure culturally competent approaches, and allow for creative community-based solutions for enhanced well-being. The design must also plan for a relationship between a recipient-driven recovery plan, and a treatment plan that is supported by a Medicaid Managed Care Organization. Support brokers—who in most models are peer specialists or recovery-trained life coaches—should be supported by an infrastructure that can foster innovation and adaptiveness within the model. And ultimately, the financial process has to offer an efficient transfer of funds from the state Medicaid program.
I’ve been involved in a planning process with NYAPRS and the Columbia Center for Practice Innovations to help OMH develop a draft model for BH self-direction. The team has worked for eight months to review research, meet with experts in the field from around the country, and engage Medicaid recipients, DOHMH (dept. health mental hygiene), and other stakeholders to develop a strategy for implementation. The process will continue in the coming months as OMH explores the best framework and negotiates the process with other state agencies, Managed Care Organizations, and recipients.
NYAPRS (New York Association for Psych Rehab Services) has been advocating for a self-directed model in New York for nearly a decade. It’s exciting to know that the model could be offered to tens of thousands of Medicaid recipients with BH needs in the coming years. The state agencies, particularly through the Medicaid Redesign process, recognize that innovative approaches like self-direction can contribute to long-term savings and system benefits. These gains will be as a result of quality of life improvements like reduced hospitalizations and increased community engagement, as well as better overall satisfaction with the Medicaid program. A New York State pilot will include a strong research component to look at how recipients of different ages, backgrounds, and with different geographic living settings use and benefit from self-direction.
Barriers do remain, particularly in the appropriate financing of the approach. It’s also essential that appropriate protections be in place for both consumers and insurance companies before the design is implemented as a standard benefit. The design may provide a truly fundamental shift in Medicaid programming and consumer rights, if stakeholders on both sides continue to work together to actively improve the design through emerging best practices.
Look for opportunities in your area to participate in a self-direction pilot in 2015, as well as information about how you can get involved in the state’s planning process.
The Gym Is My Salvation
The Gym Is My Salvation
By Ryan
Stabilizing Bipolar Disorder Through Fitness, Nutrition, Meds and Music
Some people would call it a “rant.” I call it an arch-nemesis. Yes, people sometimes can be crippled by their own condition. Only if you’re a fighter can you make it. I spent the earlier years of my life during my childhood as “cryin’ Ryan.” That’s actually what my late grandfather used to call me as a child because I cried so much. Even as a two-year-old, I was moody. It could’ve been the bout of spinal meningitis that caused my bipolar I disorder, but it’s genetic.
Bipolar and unipolar depression run on both sides of my family. When I turned the tender age of ten, I found my behavior to be quite odd. I’d go on binges where I’d starve myself until I had a Catholic school teacher give me a Snickers bar. I would retreat into the mountains a lot, as I’m from California (though I live in Illinois). It has been a battle ever since I was diagnosed with bipolar-I with psychotic features. I’ve had fifteen to twenty hospitalizations and am fortunate to be on my mother’s health insurance.
As much as it troubled me as an adolescent, I was always active in sports—until I got into the later years of high school. My most memorable class was weight training. It just clicked with me. The working out and the walks, runs, sprints as a kid kept me athletic throughout my life. This is what has helped me stay in shape while being on 8-9 medications a day. I choose a sort of diet that’s healthy and take my anti-oxidants, knowing that the medication side effects on the long-term can take a toll.
Most of the time I would be battling with the illness and then go work out when I was able to drag myself to the gym. I also suffered from the effects of electro-convulsive therapy (ECT) for two years. Yes, it helped my severe depression, but ECT rampaged my memory, so my short-term is very bad, but my long-term is intact, thanks to the effects of Acetyl L-Carnitine. I only take a few supplements, just high amounts of anti-oxidants.
I’d say the biggest battle for me besides depression is education. I spent four years at a city college and was at a junior level status at the university since I moved. I’m doing my Bachelor of Arts next because I just got my Associates degree and need employment that is good enough to cover my medication, doctor visits, hospitalizations (if I have any more) and ongoing therapy to help me cope with day to day issues.
I’m 37 now and feel like a dinosaur trying to get mediocre jobs. I’m currently on disability and will be for the rest of my life, but I’ll still have my education behind me that no one can take away from me. Please, no more ECT. The lithium plus the other pills that I take for my illness help regulate my moods so that I don’t have the severity in mood swings. I have a few friends here in Illinois, but they’re living their lives which makes it difficult to get together with them.
I’d much like to consider myself a success story as I always strive to stay in shape by hitting the gym six days a week. I’ve contemplated bodybuilding, but would never put a steroid in me even though I’ve been lifting more on than off for the past twenty-plus years. I’m nowhere near where I’d like to be physically, but I’m getting closer to my goal. The family support I receive has been fantastic. My step-dad and mother are wonderful to me. So again, I’ll remain a success story no longer plagued with disease even though I’ll have it for the rest of my life. Thanks for listening. Be sure to visit my heavy metal website, http://www.secret-face.com/, to view my writing and guitar transcriptions.
By Ryan
Stabilizing Bipolar Disorder Through Fitness, Nutrition, Meds and Music
Some people would call it a “rant.” I call it an arch-nemesis. Yes, people sometimes can be crippled by their own condition. Only if you’re a fighter can you make it. I spent the earlier years of my life during my childhood as “cryin’ Ryan.” That’s actually what my late grandfather used to call me as a child because I cried so much. Even as a two-year-old, I was moody. It could’ve been the bout of spinal meningitis that caused my bipolar I disorder, but it’s genetic.
Bipolar and unipolar depression run on both sides of my family. When I turned the tender age of ten, I found my behavior to be quite odd. I’d go on binges where I’d starve myself until I had a Catholic school teacher give me a Snickers bar. I would retreat into the mountains a lot, as I’m from California (though I live in Illinois). It has been a battle ever since I was diagnosed with bipolar-I with psychotic features. I’ve had fifteen to twenty hospitalizations and am fortunate to be on my mother’s health insurance.
As much as it troubled me as an adolescent, I was always active in sports—until I got into the later years of high school. My most memorable class was weight training. It just clicked with me. The working out and the walks, runs, sprints as a kid kept me athletic throughout my life. This is what has helped me stay in shape while being on 8-9 medications a day. I choose a sort of diet that’s healthy and take my anti-oxidants, knowing that the medication side effects on the long-term can take a toll.
Most of the time I would be battling with the illness and then go work out when I was able to drag myself to the gym. I also suffered from the effects of electro-convulsive therapy (ECT) for two years. Yes, it helped my severe depression, but ECT rampaged my memory, so my short-term is very bad, but my long-term is intact, thanks to the effects of Acetyl L-Carnitine. I only take a few supplements, just high amounts of anti-oxidants.
I’d say the biggest battle for me besides depression is education. I spent four years at a city college and was at a junior level status at the university since I moved. I’m doing my Bachelor of Arts next because I just got my Associates degree and need employment that is good enough to cover my medication, doctor visits, hospitalizations (if I have any more) and ongoing therapy to help me cope with day to day issues.
I’m 37 now and feel like a dinosaur trying to get mediocre jobs. I’m currently on disability and will be for the rest of my life, but I’ll still have my education behind me that no one can take away from me. Please, no more ECT. The lithium plus the other pills that I take for my illness help regulate my moods so that I don’t have the severity in mood swings. I have a few friends here in Illinois, but they’re living their lives which makes it difficult to get together with them.
I’d much like to consider myself a success story as I always strive to stay in shape by hitting the gym six days a week. I’ve contemplated bodybuilding, but would never put a steroid in me even though I’ve been lifting more on than off for the past twenty-plus years. I’m nowhere near where I’d like to be physically, but I’m getting closer to my goal. The family support I receive has been fantastic. My step-dad and mother are wonderful to me. So again, I’ll remain a success story no longer plagued with disease even though I’ll have it for the rest of my life. Thanks for listening. Be sure to visit my heavy metal website, http://www.secret-face.com/, to view my writing and guitar transcriptions.
Who Stole the Fun?
Who
Stole the Fun?
By
Robin
Brain Chemistry Run Amok is the Thief of Joy
Brain Chemistry Run Amok is the Thief of Joy
In
my autobiography I’m a war hero of sorts. Depression and
schizophrenia are wars where brainstorms and dueling
neurotransmitters wreak havoc with our lives in ways too horrid to
consider, stripping us of our dignity and leaving us with cold night
sweats for weeks at a time. And it is always there.
“Have
a nice day. Cheer up. Things will be better,” they say. And we try
to cheer up and have a nice day, but things don't get better.
We spend time in hospitals taking their medications, shocks, and patronization. We spend our every waking hour with a killer at our throats. Looking in the mirror we see the reflection of our murderer, one day to claim us as victim.
Then there are the constant assaults to endure, doctors who cannot quite fit us into their cookie cutter textbook diagnostic categories. Some days there is a palpable coldness chilling us to the bone that our beds, blankets and garments cannot cure.
Other days, tender nerve endings make light, sounds and other stimuli unbearable. A kind word cuts deeply. Birdsong sounds like nails on a blackboard. The fine sunlight filtering into our room blinds us, forcing us deeper under the covers. Waiting is all there is.
The next week a favorite tune becomes our enemy roiling around in our brain for days on end pulling us downward and down toward the edge. Television becomes the perpetrator of countless jingles that wound. Obsessions abound. Compulsions embarrass. Delusions lead us astray. Waiting is all there is.
We are victims of illnesses so cruel they can turn on us at any time. And the world rarely knows the penalty it extracts from us many days just to be able to walk down the street, holding onto our sanity.
We have no dreams to escape to. Our nightmares wrestle with us instead, leaving us in sweat-soaked beds and tear-stained pillows. Neither wife, nor husband, or family has a clue as to what is wrong, or knows what to do. Nor do we. We curse God, and feel shunned by those who seem to shy away from us. Our best friends stop coming around, write or call. The sun never shines in the sunshine state and all is not right with our world. Maybe it never has been or never shall be. That gun or that razor blade seem so seductive at times, and the large building we pass on the way to the store seems to call out our name, beckoning from its height. Wouldn't the fall at least offer surcease of sorrow?
Who stole the fun? Brain chemistry run amok is the thief of joy. It steals our heart and soul and if we ever let our guard down, it takes our mind as well—and a mind is a terrible thing to lose. We could even tolerate their medication and all those side effects, their electricity, their patronizing, if only there were some glimmer of light at the end of the tunnel, but the tunnel has many curves, detours and dead ends. Maybe we get lucky and find redemption in Prozac, religion or AA and become a friend of Bill's. Maybe not.
But if it is not too late, and somehow you have not given up, then maybe these words from a survivor of these wars can assist you in the long, slow, never ending climb out of the black hole, back into some light. The journey back is not easy. Some don't want you back. And the work never ends if you do come back from the edge. You can never relax and forget. The edge is slippery and strewn with banana peels. The best you can do is never give up and keep trying. That helps. Never give up. You will always have bad days. There is no cure. There is some hope.
We spend time in hospitals taking their medications, shocks, and patronization. We spend our every waking hour with a killer at our throats. Looking in the mirror we see the reflection of our murderer, one day to claim us as victim.
Then there are the constant assaults to endure, doctors who cannot quite fit us into their cookie cutter textbook diagnostic categories. Some days there is a palpable coldness chilling us to the bone that our beds, blankets and garments cannot cure.
Other days, tender nerve endings make light, sounds and other stimuli unbearable. A kind word cuts deeply. Birdsong sounds like nails on a blackboard. The fine sunlight filtering into our room blinds us, forcing us deeper under the covers. Waiting is all there is.
The next week a favorite tune becomes our enemy roiling around in our brain for days on end pulling us downward and down toward the edge. Television becomes the perpetrator of countless jingles that wound. Obsessions abound. Compulsions embarrass. Delusions lead us astray. Waiting is all there is.
We are victims of illnesses so cruel they can turn on us at any time. And the world rarely knows the penalty it extracts from us many days just to be able to walk down the street, holding onto our sanity.
We have no dreams to escape to. Our nightmares wrestle with us instead, leaving us in sweat-soaked beds and tear-stained pillows. Neither wife, nor husband, or family has a clue as to what is wrong, or knows what to do. Nor do we. We curse God, and feel shunned by those who seem to shy away from us. Our best friends stop coming around, write or call. The sun never shines in the sunshine state and all is not right with our world. Maybe it never has been or never shall be. That gun or that razor blade seem so seductive at times, and the large building we pass on the way to the store seems to call out our name, beckoning from its height. Wouldn't the fall at least offer surcease of sorrow?
Who stole the fun? Brain chemistry run amok is the thief of joy. It steals our heart and soul and if we ever let our guard down, it takes our mind as well—and a mind is a terrible thing to lose. We could even tolerate their medication and all those side effects, their electricity, their patronizing, if only there were some glimmer of light at the end of the tunnel, but the tunnel has many curves, detours and dead ends. Maybe we get lucky and find redemption in Prozac, religion or AA and become a friend of Bill's. Maybe not.
But if it is not too late, and somehow you have not given up, then maybe these words from a survivor of these wars can assist you in the long, slow, never ending climb out of the black hole, back into some light. The journey back is not easy. Some don't want you back. And the work never ends if you do come back from the edge. You can never relax and forget. The edge is slippery and strewn with banana peels. The best you can do is never give up and keep trying. That helps. Never give up. You will always have bad days. There is no cure. There is some hope.
Never
Give Up
If you try to return from hell on the slow train there is no welcoming committee and life must in fact begin anew and not where you left off. Your first and still favorite girlfriend and your best male friend aren't waiting at the station. But there are other people to meet. And perhaps some of those old friends will be happy you returned as well. You became different and are not the same person they knew and loved. You were probably pretty scary to them. Give them the benefit of the doubt; be willing to move on.
Then perhaps one day if you are lucky, technology lends you a hand. By chance you acquire a computer and get online. The internet or video games become a real presence in your life. You miss it when you are away from the consoles. You have something to wake up to. Email from online friends. News of any sort you choose. Music. Endless tutorials. Software to review and share. A Journey to take.
The light at the end of the tunnel gets a bit brighter. Days pass more quickly as you learn to work the net, play the games. There are search engines to try. Sweepstakes to enter. People to meet. Interactive games to play with others. Time is not so much of a burden. You can still learn, grow, socialize in a new way. Your views can be sent to multitudes of e-zines hungry for input. Reality of a different nature begins or returns slowly. Not as you wanted perhaps but life is more bearable again. Writing begins or continues. There is a renewal of hope, a rebirth of sorts in cyberspace.
If you try to return from hell on the slow train there is no welcoming committee and life must in fact begin anew and not where you left off. Your first and still favorite girlfriend and your best male friend aren't waiting at the station. But there are other people to meet. And perhaps some of those old friends will be happy you returned as well. You became different and are not the same person they knew and loved. You were probably pretty scary to them. Give them the benefit of the doubt; be willing to move on.
Then perhaps one day if you are lucky, technology lends you a hand. By chance you acquire a computer and get online. The internet or video games become a real presence in your life. You miss it when you are away from the consoles. You have something to wake up to. Email from online friends. News of any sort you choose. Music. Endless tutorials. Software to review and share. A Journey to take.
The light at the end of the tunnel gets a bit brighter. Days pass more quickly as you learn to work the net, play the games. There are search engines to try. Sweepstakes to enter. People to meet. Interactive games to play with others. Time is not so much of a burden. You can still learn, grow, socialize in a new way. Your views can be sent to multitudes of e-zines hungry for input. Reality of a different nature begins or returns slowly. Not as you wanted perhaps but life is more bearable again. Writing begins or continues. There is a renewal of hope, a rebirth of sorts in cyberspace.
Robin Williams' Death Shines a Light on Depression
Robin Williams' Death Shines a Light on Depression
By William Jiang, MLS
We Still Need a More Open Discourse on Mental Illness
I have been putting off writing about the death of Mr. Williams. Although I never met the man, I still smile when I think of his comedic antics. He made me laugh so so many times. It was shocking and sad to hear of his suicide. I remember I learned of his death on Facebook. It was a gray day.
I feel Robin William’s untimely death teaches us a lot about mental illness and specifically clinical depression in today's USA. In 2020 clinical depression will be the new number one cause of long term death and disability, worldwide, according to the World Health Organization, so a conversation about depression and suicide needs to happen. The stigma of depression and mental illnesses of all kinds must end because, in the end, the stigma of mental illness kills people just as surely as the illness itself. Not only must the person deal with low mood and feelings of hopelessness and isolation due to the mental illnesses themselves, but the shame and further isolation of the stigma associated with the illnesses is an additional stressor.
They say it is lonely at the top. Robin Williams said, “The worst thing in life is not to end up all alone. The worst thing in life is to end up with people who make you feel alone.” When one is a rich star who makes his money in mirth, the last thing he wants to project to the public is that he is not feeling like laughing all the time. What a personal hell that poor man was in, trying to live up to the public’s perception of him as a comic character. I have a feeling the pressure of being two people—the comic and the man—suffering with depression caused a cleft in his mind and life.
We should all be comfortable with the slings and arrows of outrageous fortune, in the sense that if we break a leg we are not a broken leg. We have a broken leg. If we become depressed, we are not a depressive. We are a person worthy of love and respect who is struggling with a dangerous beast that lives within called depression.
The US and the world society needs to come out of the dark ages and have an open and honest discussion about mental illnesses of all types. Why? We need our sparkling gems of people, all imperfect, like Mr. Robin Williams, to continue to sparkle- all of us. Matthew Fox said, “If you look closely at a tree you'll notice it's knots and dead branches, just like our bodies. What we learn is that beauty and imperfection go together wonderfully.” Every knot and age ring in a tree’s trunk tells a story of the personal history of the tree. The imperfections are what make each tree uniquely beautiful. Robin Williams wasn't crazy. He wasn't ever alone. He is now a fallen star. He was loved by many who never even met him. He will be missed.
Note: Will Jiang has authored 15 books, many about mental health, and his blog is located here: http://www.mentalhealthbooks.net
By William Jiang, MLS
We Still Need a More Open Discourse on Mental Illness
I have been putting off writing about the death of Mr. Williams. Although I never met the man, I still smile when I think of his comedic antics. He made me laugh so so many times. It was shocking and sad to hear of his suicide. I remember I learned of his death on Facebook. It was a gray day.
I feel Robin William’s untimely death teaches us a lot about mental illness and specifically clinical depression in today's USA. In 2020 clinical depression will be the new number one cause of long term death and disability, worldwide, according to the World Health Organization, so a conversation about depression and suicide needs to happen. The stigma of depression and mental illnesses of all kinds must end because, in the end, the stigma of mental illness kills people just as surely as the illness itself. Not only must the person deal with low mood and feelings of hopelessness and isolation due to the mental illnesses themselves, but the shame and further isolation of the stigma associated with the illnesses is an additional stressor.
They say it is lonely at the top. Robin Williams said, “The worst thing in life is not to end up all alone. The worst thing in life is to end up with people who make you feel alone.” When one is a rich star who makes his money in mirth, the last thing he wants to project to the public is that he is not feeling like laughing all the time. What a personal hell that poor man was in, trying to live up to the public’s perception of him as a comic character. I have a feeling the pressure of being two people—the comic and the man—suffering with depression caused a cleft in his mind and life.
We should all be comfortable with the slings and arrows of outrageous fortune, in the sense that if we break a leg we are not a broken leg. We have a broken leg. If we become depressed, we are not a depressive. We are a person worthy of love and respect who is struggling with a dangerous beast that lives within called depression.
The US and the world society needs to come out of the dark ages and have an open and honest discussion about mental illnesses of all types. Why? We need our sparkling gems of people, all imperfect, like Mr. Robin Williams, to continue to sparkle- all of us. Matthew Fox said, “If you look closely at a tree you'll notice it's knots and dead branches, just like our bodies. What we learn is that beauty and imperfection go together wonderfully.” Every knot and age ring in a tree’s trunk tells a story of the personal history of the tree. The imperfections are what make each tree uniquely beautiful. Robin Williams wasn't crazy. He wasn't ever alone. He is now a fallen star. He was loved by many who never even met him. He will be missed.
Note: Will Jiang has authored 15 books, many about mental health, and his blog is located here: http://www.mentalhealthbooks.net
A Voice for the Voiceless: One Man's Saga
A Voice for the Voiceless: One Man's Saga
By Pete
A Call for Mental Health Advocacy
I was born at the Flower Hospital in New York City in 1936, the only child of older parents. There were questions as to whether my mother, whose health was unfavorable, should have contemplated childbirth at the age of 36, but she found a way. My father was 57 years old and didn't want children.
I was otherwise a healthy baby boy born into a life of privilege. My mother ensured that I would be afforded every opportunity to succeed. I attended kindergarten at Friends Seminary and in 1946 joined the St. Thomas Boys' Choir.
After moving to Bucks County, Pennsylvania, I attended the Lawrenceville School where I played soccer and became an All-American swimmer. During the summer I held various jobs as camp counselor and lifeguard. I attended Brown University, majoring in Classical Studies. I became captain of the swim team, and set a number of swimming records. After graduating from Brown, I attended the Institute for Classical Studies in Athens, Greece, then returned to Lawrenceville to teach Latin. I also became a Housemaster and coached Lower house athletics.
I was married in 1960 and earned an M.A. in Latin from Columbia the following year. That Spring my wife and I had our first child.
In 1961, I began teaching Latin at a private school near Toledo, Ohio, where I also coached the Greek and Chess Clubs and was involved in community-based classical associations. Our second child arrived in 1963.
In 1965, the Toledo Blade published a story on our propitious expanding clan entitled, "Family Puts Fun In Learning." I began working that year toward a second Masters degree at the University of Michigan. We moved to Ann Arbor where I obtained an M.A. in Greek in the spring of 1966.
As I started work on my doctoral thesis, our third child arrived. I was now 30 years old and looking forward to a promising future in academia and ongoing roles as a coach, mentor, and community leader. But my proudest and most important responsibility would always be the one which carried me home every day, as a loving husband and father of three.
Then I started finding Satanic messages hidden in the works of Cicero and Virgil. Then came the voices. My wife and I argued. I became violent, threatening her and the children. I grew withdrawn and became complacent. I paced, began smoking, and gained weight. Needless to say, the family was thrown into a collective shock, confused, helpless and terrified.
In November 1966, I was diagnosed with paranoid schizophrenia. Thus began an odyssey of torment and disgrace which I have now endured for nearly half a century. The out-of-pocket cost of my care over this time is well into the millions of dollars.
By the early 1970s, as the situation became increasingly volatile, my wife filed for divorce. Paranoid schizophrenia decimated my family, which has since, for all intents and purposes, ceased to exist.
I had no contact with my children for nearly 20 years, until one day in 1994, my son came to see me. By then I was known as "Sir" and insisted on being called "Sir." Later I changed my name again. To this day my caretakers refer to me as "Pete."
Prior to her death, my mother set up a charitable trust naming me as its life beneficiary. She was well-aware of the severity of my condition while reserving the hope I would someday improve. Nevertheless, medical understanding of schizophrenia was still in its infancy. By all accounts, she had arranged to provide for my care for as long as I lived, if necessary.
Thus far, the courts disagree. After 29 years' residency in a long-term psychiatric facility (which does not accept Medicaid) I am now 77 years old, in ill health, and at risk of eviction as the result of nonpayment of expenses exceeding $220,000. In pursuit of a resolution to my legal dilemma, my son and guardian has learned firsthand that the mentally ill have no voice in mainstream society and little influence in our courts and legislature.
The severity and progression of my disease has left me psychotic and utterly incapacitated, unable to manage my own life and affairs. Consequently, my story has been provided by my son who not only assumed the responsibility for my care but in so doing became a voice for all victims of mental illness and their caregivers who seek justice and peace of mind.
By Pete
A Call for Mental Health Advocacy
I was born at the Flower Hospital in New York City in 1936, the only child of older parents. There were questions as to whether my mother, whose health was unfavorable, should have contemplated childbirth at the age of 36, but she found a way. My father was 57 years old and didn't want children.
I was otherwise a healthy baby boy born into a life of privilege. My mother ensured that I would be afforded every opportunity to succeed. I attended kindergarten at Friends Seminary and in 1946 joined the St. Thomas Boys' Choir.
After moving to Bucks County, Pennsylvania, I attended the Lawrenceville School where I played soccer and became an All-American swimmer. During the summer I held various jobs as camp counselor and lifeguard. I attended Brown University, majoring in Classical Studies. I became captain of the swim team, and set a number of swimming records. After graduating from Brown, I attended the Institute for Classical Studies in Athens, Greece, then returned to Lawrenceville to teach Latin. I also became a Housemaster and coached Lower house athletics.
I was married in 1960 and earned an M.A. in Latin from Columbia the following year. That Spring my wife and I had our first child.
In 1961, I began teaching Latin at a private school near Toledo, Ohio, where I also coached the Greek and Chess Clubs and was involved in community-based classical associations. Our second child arrived in 1963.
In 1965, the Toledo Blade published a story on our propitious expanding clan entitled, "Family Puts Fun In Learning." I began working that year toward a second Masters degree at the University of Michigan. We moved to Ann Arbor where I obtained an M.A. in Greek in the spring of 1966.
As I started work on my doctoral thesis, our third child arrived. I was now 30 years old and looking forward to a promising future in academia and ongoing roles as a coach, mentor, and community leader. But my proudest and most important responsibility would always be the one which carried me home every day, as a loving husband and father of three.
Then I started finding Satanic messages hidden in the works of Cicero and Virgil. Then came the voices. My wife and I argued. I became violent, threatening her and the children. I grew withdrawn and became complacent. I paced, began smoking, and gained weight. Needless to say, the family was thrown into a collective shock, confused, helpless and terrified.
In November 1966, I was diagnosed with paranoid schizophrenia. Thus began an odyssey of torment and disgrace which I have now endured for nearly half a century. The out-of-pocket cost of my care over this time is well into the millions of dollars.
By the early 1970s, as the situation became increasingly volatile, my wife filed for divorce. Paranoid schizophrenia decimated my family, which has since, for all intents and purposes, ceased to exist.
I had no contact with my children for nearly 20 years, until one day in 1994, my son came to see me. By then I was known as "Sir" and insisted on being called "Sir." Later I changed my name again. To this day my caretakers refer to me as "Pete."
Prior to her death, my mother set up a charitable trust naming me as its life beneficiary. She was well-aware of the severity of my condition while reserving the hope I would someday improve. Nevertheless, medical understanding of schizophrenia was still in its infancy. By all accounts, she had arranged to provide for my care for as long as I lived, if necessary.
Thus far, the courts disagree. After 29 years' residency in a long-term psychiatric facility (which does not accept Medicaid) I am now 77 years old, in ill health, and at risk of eviction as the result of nonpayment of expenses exceeding $220,000. In pursuit of a resolution to my legal dilemma, my son and guardian has learned firsthand that the mentally ill have no voice in mainstream society and little influence in our courts and legislature.
The severity and progression of my disease has left me psychotic and utterly incapacitated, unable to manage my own life and affairs. Consequently, my story has been provided by my son who not only assumed the responsibility for my care but in so doing became a voice for all victims of mental illness and their caregivers who seek justice and peace of mind.
Resilient Not Incompetent
Resilient Not Incompetent
By Pamela
Finally Knowing the Reason for My Distress
I think I always knew that I had a problem. When I was young I used to be afraid of everything. I stuck close to my parents and stayed home with my youngest brother Andrew who had cerebral palsy. While my other brother and sister went out and made friends, I was at home.
I hated school. I was bullied and didn't have friends until my senior year. I was a terrible student. I found things very confusing and took a long time to grasp concepts. I would stare off into space and zone out, missing entire portions of my class. I thought I had a learning disability or that something was wrong with my brain, but I just couldn't figure it out. I was afraid to talk on the telephone because of the people on the other end and what they thought about me. What they were saying about me were things that scared me.
It doesn't happen often, but sometimes while having a conversation with someone, I will be in mid-sentence and then I begin what I call “word salad” where I jumble up a bunch of nonsensical words that mean nothing. It’s embarrassing. I can hear myself saying it, but pretend I didn't do it.
I've attempted to go to school to change my career twelve different times, each time leaving for a different reason. My instructor was sabotaging me, I had chosen the wrong field to study, I wasn't smart enough, I didn't feel comfortable in my classes because the students were talking about me under their breath.
I've changed jobs about as many times as school. Left and came back four times at one job. At my last job prior to treatment, I worked with a small group of people who were as frightened of me as I was of them. I was manic and tried really hard to do a good job. I worked and spoke quickly, again speaking word salad, and could not understand why they weren't pleased with my hard work. One day I just fell apart, hallucinating and seeing blue dots all over the floor, ceiling and walls. I thought everyone at work was responsible. I left that job the same day and never returned. After talking to my priest, a criminal psychologist, about my experience, he gave me the name of a psychiatrist. This wasn't the first psychiatrist that I had been to, but the first to name my condition: schizoaffective disorder.
I began the challenge of finding the right medication to help my depression, mania, delusions, paranoia, hallucinations and anxiety. While waiting for relief, I became suicidal. I was at work and had the good sense to tell my supervisor, who took me to the emergency room where I was transferred to a hospital for behavioral health and substance abuse. I was there ten days while they played with my medication. For one week after being released, I had panic attacks every day, causing me to have fainting spells. I would pass out and end up in the emergency room. I thought I was going to get fired. I requested a change in shift from first to second shift, so I would not have to work with too many people.
After five years and two more psychiatrists, I finally have a mixture of medications that work for me. I read all the time about people wanting to get off their meds and take care of their mental illness without them, but for me medication is a necessity. I've needed medication for a long time, and without it I am not lucid.
Right now I'm taking my meds as I should. I know that down the line I'll probably have another break. I think it's inevitable. My symptoms seem to be cyclic and I don't know that I'm in trouble until I’m in the midst of it, when someone tells me something is wrong. I am grateful to be finally aware of my diagnosis. It is a relief to know that it was not my fault to have failed at the many things I've tried so hard to accomplish. For years I believed I was stupid and incompetent, when what I really am is resilient.
By Pamela
Finally Knowing the Reason for My Distress
I think I always knew that I had a problem. When I was young I used to be afraid of everything. I stuck close to my parents and stayed home with my youngest brother Andrew who had cerebral palsy. While my other brother and sister went out and made friends, I was at home.
I hated school. I was bullied and didn't have friends until my senior year. I was a terrible student. I found things very confusing and took a long time to grasp concepts. I would stare off into space and zone out, missing entire portions of my class. I thought I had a learning disability or that something was wrong with my brain, but I just couldn't figure it out. I was afraid to talk on the telephone because of the people on the other end and what they thought about me. What they were saying about me were things that scared me.
It doesn't happen often, but sometimes while having a conversation with someone, I will be in mid-sentence and then I begin what I call “word salad” where I jumble up a bunch of nonsensical words that mean nothing. It’s embarrassing. I can hear myself saying it, but pretend I didn't do it.
I've attempted to go to school to change my career twelve different times, each time leaving for a different reason. My instructor was sabotaging me, I had chosen the wrong field to study, I wasn't smart enough, I didn't feel comfortable in my classes because the students were talking about me under their breath.
I've changed jobs about as many times as school. Left and came back four times at one job. At my last job prior to treatment, I worked with a small group of people who were as frightened of me as I was of them. I was manic and tried really hard to do a good job. I worked and spoke quickly, again speaking word salad, and could not understand why they weren't pleased with my hard work. One day I just fell apart, hallucinating and seeing blue dots all over the floor, ceiling and walls. I thought everyone at work was responsible. I left that job the same day and never returned. After talking to my priest, a criminal psychologist, about my experience, he gave me the name of a psychiatrist. This wasn't the first psychiatrist that I had been to, but the first to name my condition: schizoaffective disorder.
I began the challenge of finding the right medication to help my depression, mania, delusions, paranoia, hallucinations and anxiety. While waiting for relief, I became suicidal. I was at work and had the good sense to tell my supervisor, who took me to the emergency room where I was transferred to a hospital for behavioral health and substance abuse. I was there ten days while they played with my medication. For one week after being released, I had panic attacks every day, causing me to have fainting spells. I would pass out and end up in the emergency room. I thought I was going to get fired. I requested a change in shift from first to second shift, so I would not have to work with too many people.
After five years and two more psychiatrists, I finally have a mixture of medications that work for me. I read all the time about people wanting to get off their meds and take care of their mental illness without them, but for me medication is a necessity. I've needed medication for a long time, and without it I am not lucid.
Right now I'm taking my meds as I should. I know that down the line I'll probably have another break. I think it's inevitable. My symptoms seem to be cyclic and I don't know that I'm in trouble until I’m in the midst of it, when someone tells me something is wrong. I am grateful to be finally aware of my diagnosis. It is a relief to know that it was not my fault to have failed at the many things I've tried so hard to accomplish. For years I believed I was stupid and incompetent, when what I really am is resilient.
Traumatized by a Severely Dysfunction Family
Traumatized by a Severely Dysfunction Family
By Olivia
Getting Help is Not a Moral Failure
We all know the unfortunate stereotype of someone with mental illness: the unwashed hair, the disheveled appearance, the strange awkward gait. Like most stereotypes, this one hurts both the victim of the stereotype, and the believer in this negative and mostly false view of a large group of people. However, we need to accept the fact that this stereotype, like most, has a kernel of truth to it, especially for those who have not yet gotten proper treatment. This fact allows many who don't fit the stereotype to take false comfort in the fact that they don't match it, and to stay in their denial.
I grew up in a family that looked very much like the Cleavers (from the 1950’s sitcom, “Leave it to Beaver”): a professional dad who was devoted to his family enough to be home every night for dinner, a pretty mom who cooked a healthy balanced dinner every night, a beautiful spacious home in the suburbs, all of the latest greatest toys. Add two extra girls to this picture and you have our family.
But the pretty family in the pretty house hid an ugly secret. Some of us were being severely physically abused. This abuse stems back to early childhood. I can't recall a time when I did not carefully choose my clothing to hide my bruises, burns and abrasions. I cannot remember a time when I could go happily play with other kids not worried that my already painful injuries would be reinjured. I just can't remember a time when I wasn't beaten, bullied, threatened or tormented into silence.
How did this happen with what appeared to be loving devoted parents? One word—Depression. More accurately, two words—Untreated Depression. Yes, these are the devastating consequences of untreated mental illness in both parents. My dad somehow managed to go to work every day and pay the bills. He bought us beautiful things and unfortunately did little else but escape to his workshop or music room as often as he could. My mom hid also, theoretically, behind the “Leave it to Beaver” façade she constructed in that house.
Her youngest daughter wasn't abused, I was just a "normal kid" who was a clumsy tomboy, even though I wasn't a tomboy at all. Just a "normal kid" who got punched in the face so hard at age nine that my nose bled for four hours straight until my parents finally came out of their stupor long enough to take me to the ER. Why did I bleed so much? It couldn't be because I got hit so hard by someone meaning to injure me. No, it was somehow my fault, because I was found to be anemic (blood loss will do that to you). It was my fault I was anemic because I "stubbornly" refused to eat the healthy balanced meals presented to me. It couldn't be because I was so traumatized from the abuse I lost my appetite. I was just a "normal kid" whose arm was broken in three places because I was “horsing around” with one of my siblings.
I was not just physically abused, I was emotionally abused as well. My abuser (an older brother) was able to convince me that I was adopted and that was the reason for the level of abuse inflicted on me and why my pleas for help went ignored. I was a usurper, sucking resources from a family in which I was unwanted and never belonged to. The fact that there were always plenty of resources to go around never occurred to me at age seven. Why was this older brother so abusive? Who knows why in a family in which mental illness was denied, ignored, fed by isolation and allowed to flourish.
It's ironic, the ways in which we think and try to heal the raw wounds inside of us. When I finally escaped that house of horrors to an early doomed marriage (as so many abused young women do) and got pregnant, I had a professional photograph taken of myself at seven months. I wanted my baby to have proof I was her real mom. When she was old enough, I told my daughter the reason for the photograph. My beloved child looked at me as though I had three heads and replied in sheer disbelief, "Why would anyone ever tell me I was adopted mommy? And why do you think I would believe them?" Why indeed.
We have all heard the expression “the gift that keeps on giving.” Well, I think of PTSD as the curse that keeps on cursing. Long after the initial trauma is over, our own brains continue to force us to relive it (flashbacks) and then add insult to injury in the form of nightmares. And we can’t leave out other debilitating side effects, such as hyper vigilence, (I used to sleep on the sofa with the windows open so I could “hear” someone trying to break in before they succeeded); general mistrust of people (I sized up every potential boyfriend as to how I would fare in a fight if they tried to beat me up); anxiety (I separated my shower time into sections, wash my hair in the morning, my body in the afternoon, shave at night, so that I was never naked and vulnerable for long “in case someone broke in”).
I don’t know how I was able to endure such long suffering without treatment. I was merely surviving, and not that well. I considered getting help a sign of moral failure at not being able to deal with my “memories.” I was actually proud of myself for being like my parents and dealing with everything on my own. I was smart enough to not need help, or so I thought. I am so relieved that my instinct for survival was stronger than my pride, and I finally got professional help before I became suicidal from the intense emotional suffering of untreated mental illness.
I urge anyone suffering from any sort of mental illness to seek professional help, even if you don’t believe it will work. You will never know until you try. For the first time in decades, I am actually learning to thrive, not just survive.
By Olivia
Getting Help is Not a Moral Failure
We all know the unfortunate stereotype of someone with mental illness: the unwashed hair, the disheveled appearance, the strange awkward gait. Like most stereotypes, this one hurts both the victim of the stereotype, and the believer in this negative and mostly false view of a large group of people. However, we need to accept the fact that this stereotype, like most, has a kernel of truth to it, especially for those who have not yet gotten proper treatment. This fact allows many who don't fit the stereotype to take false comfort in the fact that they don't match it, and to stay in their denial.
I grew up in a family that looked very much like the Cleavers (from the 1950’s sitcom, “Leave it to Beaver”): a professional dad who was devoted to his family enough to be home every night for dinner, a pretty mom who cooked a healthy balanced dinner every night, a beautiful spacious home in the suburbs, all of the latest greatest toys. Add two extra girls to this picture and you have our family.
But the pretty family in the pretty house hid an ugly secret. Some of us were being severely physically abused. This abuse stems back to early childhood. I can't recall a time when I did not carefully choose my clothing to hide my bruises, burns and abrasions. I cannot remember a time when I could go happily play with other kids not worried that my already painful injuries would be reinjured. I just can't remember a time when I wasn't beaten, bullied, threatened or tormented into silence.
How did this happen with what appeared to be loving devoted parents? One word—Depression. More accurately, two words—Untreated Depression. Yes, these are the devastating consequences of untreated mental illness in both parents. My dad somehow managed to go to work every day and pay the bills. He bought us beautiful things and unfortunately did little else but escape to his workshop or music room as often as he could. My mom hid also, theoretically, behind the “Leave it to Beaver” façade she constructed in that house.
Her youngest daughter wasn't abused, I was just a "normal kid" who was a clumsy tomboy, even though I wasn't a tomboy at all. Just a "normal kid" who got punched in the face so hard at age nine that my nose bled for four hours straight until my parents finally came out of their stupor long enough to take me to the ER. Why did I bleed so much? It couldn't be because I got hit so hard by someone meaning to injure me. No, it was somehow my fault, because I was found to be anemic (blood loss will do that to you). It was my fault I was anemic because I "stubbornly" refused to eat the healthy balanced meals presented to me. It couldn't be because I was so traumatized from the abuse I lost my appetite. I was just a "normal kid" whose arm was broken in three places because I was “horsing around” with one of my siblings.
I was not just physically abused, I was emotionally abused as well. My abuser (an older brother) was able to convince me that I was adopted and that was the reason for the level of abuse inflicted on me and why my pleas for help went ignored. I was a usurper, sucking resources from a family in which I was unwanted and never belonged to. The fact that there were always plenty of resources to go around never occurred to me at age seven. Why was this older brother so abusive? Who knows why in a family in which mental illness was denied, ignored, fed by isolation and allowed to flourish.
It's ironic, the ways in which we think and try to heal the raw wounds inside of us. When I finally escaped that house of horrors to an early doomed marriage (as so many abused young women do) and got pregnant, I had a professional photograph taken of myself at seven months. I wanted my baby to have proof I was her real mom. When she was old enough, I told my daughter the reason for the photograph. My beloved child looked at me as though I had three heads and replied in sheer disbelief, "Why would anyone ever tell me I was adopted mommy? And why do you think I would believe them?" Why indeed.
We have all heard the expression “the gift that keeps on giving.” Well, I think of PTSD as the curse that keeps on cursing. Long after the initial trauma is over, our own brains continue to force us to relive it (flashbacks) and then add insult to injury in the form of nightmares. And we can’t leave out other debilitating side effects, such as hyper vigilence, (I used to sleep on the sofa with the windows open so I could “hear” someone trying to break in before they succeeded); general mistrust of people (I sized up every potential boyfriend as to how I would fare in a fight if they tried to beat me up); anxiety (I separated my shower time into sections, wash my hair in the morning, my body in the afternoon, shave at night, so that I was never naked and vulnerable for long “in case someone broke in”).
I don’t know how I was able to endure such long suffering without treatment. I was merely surviving, and not that well. I considered getting help a sign of moral failure at not being able to deal with my “memories.” I was actually proud of myself for being like my parents and dealing with everything on my own. I was smart enough to not need help, or so I thought. I am so relieved that my instinct for survival was stronger than my pride, and I finally got professional help before I became suicidal from the intense emotional suffering of untreated mental illness.
I urge anyone suffering from any sort of mental illness to seek professional help, even if you don’t believe it will work. You will never know until you try. For the first time in decades, I am actually learning to thrive, not just survive.
Book Ends: A Vision of a Dream by Angelina Darling
Book Ends: A Vision of a Dream by Angelina Darling
Reviewed by Columnist Kurt Sass
A Vision of a Dream is a book that I recommend for anyone that is in recovery from mental illness as well as family and friends. Its main message, at least to me as a mental health consumer, is that the definition of recovery is different to each of us. It is a personal definition. As a consumer, my recovery should not be based upon what my family/friends feel it should be, or what society thinks it should be. My recovery is my own.
The book starts out with a laundry list of “how to help a loved one struggling with depression” and “strategies for dealing with depression.” As with any of these lists, some items are extremely useful, while others not. Simply pick the ones that are applicable for your situation. On the list of helping a loved one, there are a lot of basics (cooking, shopping, etc), but the three I found the most helpful on the list to be: being kind, donate time and patience. On the list of strategies, the ones I found most helpful were: protect your sleep, make provisional appointments with friends and keep your chores down to three simple steps. Ms. Darling definitely knows the importance of self-care.
Ms. Darling then goes on to tell her life story, which includes numerous hospitalizations, (one in which she almost dies from an overdose of haldol), as well as having family members with bipolar disorder, some with tragic results. She describes how stopping her medications leads her into a psychosis in which she believes the mafia are after her. She also has bipolar disorder, and is a rapid cycler, sometimes transferring from mania to depression and vice versa in a manner of minutes. She has tried ECT (Electro Convulsive Therapy or “shock treatments”), but they did not work, either. She had to stop after four treatments because they caused her mental confusion.
At the end of the book, Ms. Darling describes how her life is in the present. To be honest, at first I was feeling sorry for her, as her descriptions of her current job status, love life and even grooming habits had me feeling that she was not in a very good place in her recovery. But then I continued to read about how she has good energy, good clarity of mind, decent concentration and is no longer in the “worry mode.” She also feels that she has won the battle against her bipolar disorder, on what she says are the five fronts she was fighting: the illness; the denial; the side effects of medications; the self esteem; and society’s projection that she is worthless.
After reading this, it is obvious that I had no right to pre-judge Ms. Darling as to her recovery, just as my recovery belongs only to me.
Reviewed by Columnist Kurt Sass
A Vision of a Dream is a book that I recommend for anyone that is in recovery from mental illness as well as family and friends. Its main message, at least to me as a mental health consumer, is that the definition of recovery is different to each of us. It is a personal definition. As a consumer, my recovery should not be based upon what my family/friends feel it should be, or what society thinks it should be. My recovery is my own.
The book starts out with a laundry list of “how to help a loved one struggling with depression” and “strategies for dealing with depression.” As with any of these lists, some items are extremely useful, while others not. Simply pick the ones that are applicable for your situation. On the list of helping a loved one, there are a lot of basics (cooking, shopping, etc), but the three I found the most helpful on the list to be: being kind, donate time and patience. On the list of strategies, the ones I found most helpful were: protect your sleep, make provisional appointments with friends and keep your chores down to three simple steps. Ms. Darling definitely knows the importance of self-care.
Ms. Darling then goes on to tell her life story, which includes numerous hospitalizations, (one in which she almost dies from an overdose of haldol), as well as having family members with bipolar disorder, some with tragic results. She describes how stopping her medications leads her into a psychosis in which she believes the mafia are after her. She also has bipolar disorder, and is a rapid cycler, sometimes transferring from mania to depression and vice versa in a manner of minutes. She has tried ECT (Electro Convulsive Therapy or “shock treatments”), but they did not work, either. She had to stop after four treatments because they caused her mental confusion.
At the end of the book, Ms. Darling describes how her life is in the present. To be honest, at first I was feeling sorry for her, as her descriptions of her current job status, love life and even grooming habits had me feeling that she was not in a very good place in her recovery. But then I continued to read about how she has good energy, good clarity of mind, decent concentration and is no longer in the “worry mode.” She also feels that she has won the battle against her bipolar disorder, on what she says are the five fronts she was fighting: the illness; the denial; the side effects of medications; the self esteem; and society’s projection that she is worthless.
After reading this, it is obvious that I had no right to pre-judge Ms. Darling as to her recovery, just as my recovery belongs only to me.
Darkness Stayed After Mum
Darkness Stayed After Mum
By Jayne
Peace and Love Quest Fraught with Peril
I couldn’t say I had a normal childhood. Mum was frequently ill, and as a child I recall being sent to family since I was a baby. My Dad got a better job which meant leaving the security of the family, and when we moved away, I was left in the care of Mum.
Mum seemed to like the new area, and I was well looked after. It wasn’t until I went to primary school at age five that I asked what the rope was in the gardens and was told that they were clothes lines where you hung your clothing to dry. We used the radiators, as Mum never went outside. Because if Mum didn’t go out, neither did I, unless it was with Dad. I began to realize that my home was different from the other kids in my class.
Soon Mum was ill again and sent off to the old Victorian Mental Institution miles away from home. I was sitting on the stairs listening to the doctors examining her and Mum screaming that she wasn’t going back. I didn’t see her for about three months and she had been given ECT (electro convulsive therapy). In the late 1960s you didn’t get pain killers with the treatment. When Mum returned home, she had no idea that I was her child. And so I went to stay with family. In the end, I stopped feeling anything for my Mum. She had spent all of my childhood and well into my twenties in and out of hospitals having different medications and therapies.
My life as an adult wasn’t brilliant. I made awful mistakes. I would absorb myself into the families of boyfriends, making myself into someone they would love. I had children and vowed that I would be the best mother I could be. But my husband fell in love with someone else and set up home with her and my children, resulting in my first breakdown. I wasn’t a fit person to look after myself or my children. Then he moved away. I had no idea where they had moved to. Breakdown number two began with new meds and therapy, but nothing could take my pain away, so I thought I would. I had been cast as an unfit mother so my children wouldn’t miss me, as they had a perfect new Mum.
I collected tablets, went to the doctors with bad headaches. They prescribed painkillers, and didn’t question me. I took them and found myself spending time in the hospital. It took a lot of time to feel at peace in my life.
When I slowly got back to my Mum, I think she started to care. I then remarried. After eight years of marriage, he started to change and do things I didn’t like. In my dreams I would wish him harm in small ways. But toward the end of our marriage, I wished nasty things to happen to him. I found the strength to leave him and was getting a grip on my life, when he died within a few months. Feeling horrendous guilt, I blamed myself for two years. Pushing the guilt to the back of my mind, I tried to forget anything about him and our life together. I just could not settle anywhere. Then I met a man and fell in love again.
With this man, I felt that I had never experienced anything like I felt for him. At last I was truly loving and being loved. After about one year, I found out that he was having an affair with another woman. My life was shattered again and I wanted out. I began collecting tablets again.
One Sunday when he was out, the tablets went down with a bottle of wine and I went to bed. He came back home because I had acted odd, and caught me just in time to save my life. But I am living with the consequences five years now. The guilt from wishing my second husband dead, losing my children, and then the affair, all mixed in with the pain of my Mum was just too much.
The darkness that came afterward lasted a long while. But nowadays, I am able to see the signs of when I am slipping downward. And I am now able to ask for help. Losing my Mum was scary for me. Those around me thought I would be unable to cope. Some days have been hell to go through. But I breathe, and that’s all that matters in the moment. Small steps now will lead to bigger and better ones soon.
By Jayne
Peace and Love Quest Fraught with Peril
I couldn’t say I had a normal childhood. Mum was frequently ill, and as a child I recall being sent to family since I was a baby. My Dad got a better job which meant leaving the security of the family, and when we moved away, I was left in the care of Mum.
Mum seemed to like the new area, and I was well looked after. It wasn’t until I went to primary school at age five that I asked what the rope was in the gardens and was told that they were clothes lines where you hung your clothing to dry. We used the radiators, as Mum never went outside. Because if Mum didn’t go out, neither did I, unless it was with Dad. I began to realize that my home was different from the other kids in my class.
Soon Mum was ill again and sent off to the old Victorian Mental Institution miles away from home. I was sitting on the stairs listening to the doctors examining her and Mum screaming that she wasn’t going back. I didn’t see her for about three months and she had been given ECT (electro convulsive therapy). In the late 1960s you didn’t get pain killers with the treatment. When Mum returned home, she had no idea that I was her child. And so I went to stay with family. In the end, I stopped feeling anything for my Mum. She had spent all of my childhood and well into my twenties in and out of hospitals having different medications and therapies.
My life as an adult wasn’t brilliant. I made awful mistakes. I would absorb myself into the families of boyfriends, making myself into someone they would love. I had children and vowed that I would be the best mother I could be. But my husband fell in love with someone else and set up home with her and my children, resulting in my first breakdown. I wasn’t a fit person to look after myself or my children. Then he moved away. I had no idea where they had moved to. Breakdown number two began with new meds and therapy, but nothing could take my pain away, so I thought I would. I had been cast as an unfit mother so my children wouldn’t miss me, as they had a perfect new Mum.
I collected tablets, went to the doctors with bad headaches. They prescribed painkillers, and didn’t question me. I took them and found myself spending time in the hospital. It took a lot of time to feel at peace in my life.
When I slowly got back to my Mum, I think she started to care. I then remarried. After eight years of marriage, he started to change and do things I didn’t like. In my dreams I would wish him harm in small ways. But toward the end of our marriage, I wished nasty things to happen to him. I found the strength to leave him and was getting a grip on my life, when he died within a few months. Feeling horrendous guilt, I blamed myself for two years. Pushing the guilt to the back of my mind, I tried to forget anything about him and our life together. I just could not settle anywhere. Then I met a man and fell in love again.
With this man, I felt that I had never experienced anything like I felt for him. At last I was truly loving and being loved. After about one year, I found out that he was having an affair with another woman. My life was shattered again and I wanted out. I began collecting tablets again.
One Sunday when he was out, the tablets went down with a bottle of wine and I went to bed. He came back home because I had acted odd, and caught me just in time to save my life. But I am living with the consequences five years now. The guilt from wishing my second husband dead, losing my children, and then the affair, all mixed in with the pain of my Mum was just too much.
The darkness that came afterward lasted a long while. But nowadays, I am able to see the signs of when I am slipping downward. And I am now able to ask for help. Losing my Mum was scary for me. Those around me thought I would be unable to cope. Some days have been hell to go through. But I breathe, and that’s all that matters in the moment. Small steps now will lead to bigger and better ones soon.
Medicaid Managed Care: Rising to the Challenge
Medicaid Managed Care: Rising to the
Challenge
By Briana Gilmore,
Public Policy and Advocacy Director, NYAPRS
During a recent forum where policy and
business leaders met to publically discuss health care reform, Arthur
Gianelli from Mt. Sinai hospital said that for the first time
“Medicaid is at the vanguard of delivery system reform.” This
statement is a sign of a big change in thinking as Medicaid becomes a
new beacon of progressive change in New York State (NYS) and across
the nation. The current expansions and experiments in our Medicaid
program are driving change at every level: from member satisfaction,
to service integration, to oversight of insurance companies and to
quality incentives.
These changes have been in the
spotlight since Governor Cuomo implemented the Medicaid Redesign Team
in 2011. The Redesign Team started to engage experts—including
consumer advocates—in a process to transform our expensive but
low-quality service system.
An article I wrote in the spring
edition of NYC Voices introduced integrated Medicaid Managed
Care for people with behavioral health needs and a special option
called a Health and Recovery Plan (“HARP”). In spring 2015 in
NYC, all adult Medicaid recipients who are not dually enrolled in
Medicare will start receiving mental health and addiction services
through their chosen insurance plan. Members with greater behavioral
health needs will be enrolled in a HARP, and will have a personal
assessment to determine eligibility for recovery services.
Several challenges remain before the
state can successfully implement HARPs and integrated managed care
for over seven hundred thousand Medicaid beneficiaries who use
behavioral health services. The greatest challenge is arranging
effective care management for every HARP recipient.
Care management is the backbone of NYS’
plans for Medicaid redesign, and Health Homes were implemented
statewide to meet the challenge of coordinating care for people with
mental, substance, and physical health needs. The implementation of
Health Home care management has met challenges since the beginning,
including low reimbursement rates for care managers and high case
loads. Many Health Home beneficiaries have needs that include
homelessness, legal implications of criminal justice involvement, and
complex health needs that make behavioral health problems harder to
manage.
Care managers have worked hard and in
some instances have offered successful coordination, but in others
have not been able to effectively assist individuals with all of
these needs.
The current expectation is that Health
Home care managers will provide a detailed assessment for HARP
beneficiaries that can translate into a plan of care that may include
an integrated set of recovery services. The plan of care will have to
be translated to the HARP insurance plan and then coordinated amongst
a network of service providers.
Achieving this for all HARP recipients
in a timely way will be very complicated, particularly because the
Office of Mental Health (OMH) and the Office of Alcoholism and
Substance Abuse Services (OASAS) are estimating eighty thousand NYC
residents will be eligible for these assessments as soon as the plan
is implemented. The complexities around care management must be
negotiated between state agencies and HARP plans, in recognition of
the barriers within Health Home implementation and the needs of
Medicaid recipients.
NYAPRS has been advocating for the
recovery-oriented services offered in a HARP—like peer supports,
crisis diversion, family caregiver training, non-medical
transportation, and supported employment and education—for years,
recognizing their ability to keep people leading a full life in the
community. The management of these services by insurance companies
will be a new approach to behavioral health delivery.
Managed Care Organizations offering
HARP services were evaluated with strict criteria from OMH, OASAS,
and the Department of Health. They have to meet readiness standards
and a feedback process to the state by which they will be evaluated.
But they also have to provide access to a range of new services that
have never been offered on such a large scale before, and understand
social outcomes like employment and education.
The challenges around recovery services
aren’t only at the level of the insurance company, but through
interactions between provider and beneficiary. “Recovery-orientation”
is easy enough to say, but entails far more than adding a new list of
services to a program. Training on best practice models and
continuous quality assurance in community behavioral health has
previously been the responsibility of OMH and OASAS. They may take on
this role to a greater degree in our transformed system, or may rely
on HARPs to ensure quality service delivery.
In order to meet access needs, new
rehabilitation services including crisis respite, supported
education, and psychosocial rehab will be provided by some
“traditional providers” like clinics. The ability for these
providers to understand the nuances of a recovery journey, support
that journey effectively, and offer real change to our community
members is a future that seems far away from our current delivery
system. The system as a whole must create expectations for
standardization and quality improvement and then commit to meeting
that challenge.
Many genuine and hard-working people
who promote recovery are guiding this transformation within state
agencies, community programs, and HARP insurance plans, but rising
above the complexities and achieving the challenge of
recovery-oriented service delivery will be reliant on dedicated
partnerships. The protection of Medicaid beneficiary service access
and rights throughout this process must be maintained, without
allowing the possible pitfalls of change hinder true progress in our
mental health and addiction services.
Just Do It!
Just Do It!
A Column by Martha Seymour
Holiday Planning in the Big Apple, Alone or With Others
As we get closer to holiday time in New York City, my mind drifts to all the many lovely things there are to do around town. Many of them are free and accessible by public transportation. Doing it alone or with others is relatively easy. Planning at the last minute is one way to go. I don’t know about you, but I like to structure the weeks ahead by penciling fun and/or cultural activities into my calendar. Whatever system you use, it is refreshing to know that we’re in charge of our own lives and needn’t feel alone or lonely, especially during the holiday season.
Choose an activity to do solo, with family, or friends. You can stay home and listen to holiday music or watch holiday movies and specials on television or catch some vintage classics on YouTube. Checking off the categories of things you like to do helps to narrow down the wide variety of choices available in our fair city. I especially enjoy listening to music, whether it be religious music sung in churches or very old and secular songs. You might choose other things to do, but this is a start. Listening to the preferences of others can give you some new ideas about future activities. Going solo may open the opportunity to meet future companions who share your interests for future activities and events.
Many folks use the Internet to find interesting happenings around town. You can also try Time Out New York magazine, in print or online. One such major website to search out city happenings is www.nycgo.com.
Here is a basic list of traditional winter holiday events indigenous to New York City:
Macy’s Thanksgiving Day Parade on 11/27; Lincoln Square Party on 12/1; Rockefeller Center Christmas Tree Lighting Ceremony on 12/3; Hanukah Menorah Lighting Ceremony on 12/6; and New Year’s Eve Times Square Ball Dropping Ceremony on 12/31.
Note that even if you miss the Rockefeller Center Tree Lighting ceremony itself, the tree is a spectacular sight to behold for several weeks after Christmas. Ice skating is fun too. And if you don’t skate, you can watch tourists and urbanites swirling around (and occasionally gracefully, or not, flopping down on the ice) in their colorful holiday gear.
Macy’s has a major tourist facility now on one of its first floor balconies at 34th Street and Broadway. Our public libraries provide activities for children and adults.
You can always pick up a local newsstand issue of The New Yorker, New York Magazine or Time Out New York to find out about the latest popular A-rated restaurants, walking tours, movies, theatres, dance, and comedy acts in New York. Or check out your local neighborhood newspapers and community newsletters, college bulletins, and listen to that old fashioned device called a radio. And remember, even the outer boroughs such as Brooklyn, Queens, and Staten Island celebrate the holidays, and you might enjoy an adventurous trek on the ferry boat. Did I mention The Bronx? There is always The Bronx Zoo for an interesting outing with the family.
Ever wander into a museum during holiday time? Try it. You never know who you might meet, or what unexpected fun you might have. Many museums are free to the public or you can pay what you can afford, be it five dollars, a dollar or a mere twenty-five cents. The Brooklyn Museum has a free monthly event called First Saturdays, providing an all-day experience of gallery viewing, as well as a schedule of live music, films, dance and refreshments. The National Museum of the American Indian, in Manhattan, is free every day. The Rubin Museum is free every first Monday of the month for seniors. Many bookstores have free literary activities. The Housing Works Book Café in Soho boasts a little café hosting events and it's where their old books reside.
Wishing you an enjoyably good holiday season and many happily planned, or unplanned, experiences.
A Column by Martha Seymour
Holiday Planning in the Big Apple, Alone or With Others
As we get closer to holiday time in New York City, my mind drifts to all the many lovely things there are to do around town. Many of them are free and accessible by public transportation. Doing it alone or with others is relatively easy. Planning at the last minute is one way to go. I don’t know about you, but I like to structure the weeks ahead by penciling fun and/or cultural activities into my calendar. Whatever system you use, it is refreshing to know that we’re in charge of our own lives and needn’t feel alone or lonely, especially during the holiday season.
Choose an activity to do solo, with family, or friends. You can stay home and listen to holiday music or watch holiday movies and specials on television or catch some vintage classics on YouTube. Checking off the categories of things you like to do helps to narrow down the wide variety of choices available in our fair city. I especially enjoy listening to music, whether it be religious music sung in churches or very old and secular songs. You might choose other things to do, but this is a start. Listening to the preferences of others can give you some new ideas about future activities. Going solo may open the opportunity to meet future companions who share your interests for future activities and events.
Many folks use the Internet to find interesting happenings around town. You can also try Time Out New York magazine, in print or online. One such major website to search out city happenings is www.nycgo.com.
Here is a basic list of traditional winter holiday events indigenous to New York City:
Macy’s Thanksgiving Day Parade on 11/27; Lincoln Square Party on 12/1; Rockefeller Center Christmas Tree Lighting Ceremony on 12/3; Hanukah Menorah Lighting Ceremony on 12/6; and New Year’s Eve Times Square Ball Dropping Ceremony on 12/31.
Note that even if you miss the Rockefeller Center Tree Lighting ceremony itself, the tree is a spectacular sight to behold for several weeks after Christmas. Ice skating is fun too. And if you don’t skate, you can watch tourists and urbanites swirling around (and occasionally gracefully, or not, flopping down on the ice) in their colorful holiday gear.
Macy’s has a major tourist facility now on one of its first floor balconies at 34th Street and Broadway. Our public libraries provide activities for children and adults.
You can always pick up a local newsstand issue of The New Yorker, New York Magazine or Time Out New York to find out about the latest popular A-rated restaurants, walking tours, movies, theatres, dance, and comedy acts in New York. Or check out your local neighborhood newspapers and community newsletters, college bulletins, and listen to that old fashioned device called a radio. And remember, even the outer boroughs such as Brooklyn, Queens, and Staten Island celebrate the holidays, and you might enjoy an adventurous trek on the ferry boat. Did I mention The Bronx? There is always The Bronx Zoo for an interesting outing with the family.
Ever wander into a museum during holiday time? Try it. You never know who you might meet, or what unexpected fun you might have. Many museums are free to the public or you can pay what you can afford, be it five dollars, a dollar or a mere twenty-five cents. The Brooklyn Museum has a free monthly event called First Saturdays, providing an all-day experience of gallery viewing, as well as a schedule of live music, films, dance and refreshments. The National Museum of the American Indian, in Manhattan, is free every day. The Rubin Museum is free every first Monday of the month for seniors. Many bookstores have free literary activities. The Housing Works Book Café in Soho boasts a little café hosting events and it's where their old books reside.
Wishing you an enjoyably good holiday season and many happily planned, or unplanned, experiences.
All in the Family
All
in the Family
Acceptance:
Step One to a Better Life
There
is magic everywhere; on the floors, on the sheets, in the walls. She
tries to cut it out but it never really goes away. Spells are put on
her by the same people who are always stealing her clothes and
dishes. It’s the women her husband is always cheating with. They
are the ones putting the evil in her home. She knows he is cheating
because he never takes her out and they don’t have sex regularly. I
know this because she tells me, because she thinks I am her friend,
but I am not. I am her daughter.
My
mom has paranoid personality disorder. I finally got her to see a
psychiatrist a few years ago but she only went three times. Aside
from her mandated stay at the hospital resulting from her calling the
cops on my dad for killing her brother who had just passed away in
Italy, she has never seen anyone for treatment. As the officers
escorted her to the ambulance, I could feel my mind fracture my
heart. They kept her for two days, releasing her after discovering I
was a mental health counselor. She still blames every pain she gets
in her aging body on the drugs they gave her then.
My
mom says she is fine. She doesn’t see her illness. That’s common
for people with her disorder. Living life with mom has been both an
adventure and a lesson in patience. She is one of eight children,
most of whom had mental illness. Sadly, none of them actually sought
help except for her brother, John, who was schizophrenic and briefly
hospitalized when he became catatonic. My mom’s illness has
progressively gotten worse. She has ripped the molding off most of
the walls in her home. She burns incense every single day, twice a
day, to the point where a neighbor once thought our house was on
fire. She reads the bible daily, religion being a theme in her
paranoia.
I
often tell myself I should be glad the only thing I got hit with was
depression. My mental health resume is as follows: When I was 14, I
was afraid to brush my teeth at night with the door open fearing my
father would stab me from behind. When I was 16, I sat on my bed
holding his gun, with the bullets spread out like a path to peace
before me. When I was 22, I tested my veins with the blade of a knife
and washed out the thoughts with vodka. When I was 29, I celebrated
with a bottle of pills and some liquor. I was persistent, if not
successful. I was also very lucky because I never wanted to die. I
was just tired, exhausted from how hard breathing had become. I was
tired of being tired.
I
have been battling depression most of my life, though I didn’t
always know it. I never went to a therapist until I was 22. She was
the first of many I would see through the years. She tried putting me
on meds but I stopped taking them, deciding I could do better on my
own. I never liked the idea of needing something. I had issues with
commitment. I can’t remember the number of jobs I’ve held and
quit, or the number of therapists I’ve seen. I soon discovered
drinking would make me feel better in the moment. So partying became
my new antidepressant and blackouts were just a side effect.
I
met my husband when I was on this self-prescribed treatment plan. I
hid my amount of binge drinking by pre-drinking. He was smart,
hard-working, and despite having met at a club, not into partying as
I was. He was handsome and he made me laugh. So nine months after
meeting this man, who made me want to walk away from the ledge, I
married him.
I
wish I could say that was the end of my battle, some magical happily
ever after cure all, but it wasn’t it. It took years of on and off
again binge drinking and getting on and off meds before I managed to
understand this was not something I could just get over, or cure.
This was something I needed to make peace with and accept. I needed
to accept that medication was going to be part of my routine, and
that this did not mean I was weak or crazy, it meant I had an
illness. It took me years to realize that just like my mother, I had
been unraveling in my own way through my own denial. With the support
of a man who refused to let me drag him into the depths of my despair
and also refused to abandon me there, I started to climb out of the
abyss and find myself again, maybe for the very first time.
Editor-At-Large/As I See It: The Dangers of Lithium
Editor-At-Large/As
I See It: The Dangers of Lithium
A
Column by NYC
Voices'
Business Manager Marvin Spieler
Exercise
Your Consumer's Right to Choose
After
being on the medication Lithium Carbonate (Lithium) for twenty-one
years, I became toxic. I knew potentially I could become toxic, but I
was playing the odds. However, I lost in the end. Now I am on
dialysis as a result, as Lithium ruined my kidneys.
The
kidneys: we all have two of them, they filter our body’s blood to
keep it clean. The kidneys excrete the waste products through the
urine. Now as a result, I am with two kidneys that are almost
useless. Dialysis acts as my artificial kidneys. Without dialysis, I
would die. That’s the bottom line. Go on dialysis or die.
Here’s
the problem that I now have as a result. I must go to a dialysis
center three times a week. I spend approximately five hours each day
there. Actually, three hours on the dialysis machine, and usually
about two hours in transportation time to and from the center.
The
result is that I waste three days of what used to be productive time
doing other things. I used to be a mental health advocate. However, I
had to drop my advocacy work. I can no longer attend meetings, go to
conferences, or go on trips to Albany with NYAPRS members to keep
legislators from cutting the mental health budget.
At
first I became depressed over my new reality, but that has passed. I
am used to my new lifestyle. I finally accepted the fact that I had
to drop my mental health advocacy work. However, it is a great loss.
Why
am I telling you all this? GET OFF LITHIUM NOW IF YOU TAKE THIS
DRUG!! Fortunately for you, now there are substitutes like Depokote
or Tegrotal that work just as well for most mental health consumers.
Only in rare cases, a few consumers have no choice but to stay on
Lithium. I tried Depokote and Tegrotal. Tegrotal is now my drug of
choice. I am doing as well on Tegrotol as I was on Lithium. Like
Lithium, I need periodic blood tests to see that the level is in
balance, so that in itself isn’t new for me.
Again
my advice to you is this. Seriously, have a discussion with your
psychiatrist. See what he says. Listen to his point of view. But in
the end you have “the right” to determine what meds you take and
don’t take. That is a right you have. Use your judgment. Mental
illness doesn’t kill your right to think or choose. Use your brain
to control your health.
When
I went on Lithium there wasn’t much else to control my moods. It
worked. I had twenty-one glorious years of continuous freedom from
psych wards on Lithium. I built a life for myself. I made long-term
friends, met a wonderful woman and married her. We decided on no
children as we both had mental illness and didn’t want to
potentially pass it onto our children. That is my only regret.
Children would possibly have been a blessing, but that was our choice
back then. Medications were crude and usually not very effective. We
didn’t and couldn’t anticipate a modern second generation on
psychiatric meds. So my advice is get married and have kids if you
desire to. However, be ready for the turmoil your kid or children may
have initially with mental illness. Mental illness is like no other
illness I know of.
By
the way, I am proud to say I am hospital-free for over thirty years
now, a record I am proud of. This is one of my major accomplishments
in life. To be free of the goons in psych hospitals is a real joy. To
no longer worry about a hospitalization as long as I take my meds
daily, I do thank medical research and modern drug production.
How
Long Have You Been On Meds?
To
be blunt, the drug companies in this country have pushed their
products to the point of being the totally acceptable panacea to help
the mentally ill. It is my understanding that in Europe, medications
are used as a last resort.
Also,
drug company representatives, meaning salesmen and psychiatrists who
represent drug companies, have brain-washed most of our American
psychiatrists. We consumers, as a result, have been practically
forced to take meds for life. It is my assumption that after “x”
number of years on medication, it is almost impossible to get off
meds on our own.
Most
psychiatrists swear never to take you off meds. That is what they are
probably taught. Otherwise, why is it so hard to find a psychiatrist
who will help get you off? In the end, we ourselves begin to believe
the common line of thought about staying on them.
After
a lifetime of medication, my concentration and memory are shot. As a
result, I haven’t been able to read a book in years. I guess I must
be thankful not to be hospitalized for years on end. Thank you, drug
industry. HAH!!
Tooth Extraction Unlocks Bipolar Adventure
Tooth Extraction
Unlocks Bipolar Adventure
By David Scott
Some Parts of the
Adventure Were Better Than Others
The year 1995 was
the greatest year of my life. The worst year of my life was 1996.
That in itself comprised the highs and lows of bipolar.
In 1995, I was 22
and had two jobs, a girlfriend, lots of friends and my own car. One
of my jobs was security at all the concerts in the Washington, DC
area. I also worked security at all Washington Redskin games.
While I was
backstage at a concert, my supervisor asked me if I wanted to work
the Super Bowl. I was thrilled! They flew me down to Miami and I
worked on the field at Super Bowl 29. I even took Steve Young, the
MVP, back to the locker room after the game. 1995 was an incredible
year.
In 1996, I had to
have two wisdom teeth removed. My mother took me to the doctor. The
doctor had the same last name as me. I thought I was in good hands.
The procedure did
not go well. I could feel the drill going into my gum. The novocaine
kept wearing off. The doctor stuck me with the novocaine seven
different times. I remember everything because I am forced to relive
that day every day of my life. The doctor even told his assistant to
go get the larger drill because he could not extract the tooth. After
it was all over, I felt strange, like my mind had been altered. My
mother and I got into the elevator and I whispered in her ear that I
could hear what the other people in the elevator were thinking. She
did not respond.
When we got into
the car, all I could talk about was God and other grandiose things.
We went to the pharmacy to pick up my pain medicine and I could hear
everyone's thoughts. Two days later I was completely insane and
violent.
I was taken by
ambulance to the local hospital. Once there, I fought with at least
six doctors and hospital staffers before they knocked me out with a
needle. When I woke up, a doctor told me that they thought I was high
on drugs but found none in my system. I told them I had never taken
drugs and I didn't even drink alcohol. The doctor told me I had
bipolar disorder. I did not know what that was. He explained it to
me. I told him that I didn't understand. Nobody in my family had
mental illness and it was not brought on by drugs or alcohol. He said
I had it all along but the severe trauma that I went through with my
oral surgery had triggered it. I was devastated.
I spent a month
in the hospital, the first two weeks in restraints. One time they
released my right wrist to eat the tray of food and when I took the
tray off, I hallucinated that there was a live snake wrapped around
the plate, so I threw it on the floor. Also, while in restraints, I
talked to this shadow on my ceiling and this light that would form a
shape of what I was thinking. I thought it was God.
After a month, I
came home. I felt great and took my medication. I thought after
taking the medication for two weeks, who needs the side effects? So I
stopped taking it.
This time I had
to go to a different hospital. It was not like a mental hospital with
restraints and harshness of any sort. I was in the room with two
other guys and I had the freedom to walk around. I participated in
group and I played chess with this bipolar lady every day. It was not
bad except that I wanted to go home and every time I thought I was
okay, the doctor was like, I think you need one more week. That was
totally frustrating. What did I have to do to convince them to let me
go? Well, I ended up staying there for a month, just like the other
hospital. I would never stop taking psychiatric medication ever
again.
When I got home,
something was happening. I started writing poetry although I had
never written any before. I was pretty good at writing in school but
I did not know how to write poetry. In my manic state I was writing
two poems per day. In my depressed state I was writing one every
other day. I showed them to my father who was duly impressed. I
started reading poets, beginning with Langston Hughes whom I had
always admired. Then at a book sale, something just drew me to a
rather plain looking book with the name Dylan Thomas on it. I was
blown away by this guy and I discovered he was bipolar like me. I
also found out that people were mesmerized at his poetry readings. So
I started going to poetry readings.
People responded
to my poetry. Within a year, I was featured at libraries and literary
venues. When I discovered poetry slams I started writing more upbeat
poems for performance purposes. I was winning poetry slams all over
the Washington, DC area. One of my poems was on the hottest radio
station in DC. For some reason, getting published was not as
important to me as performing was.
Today, I suffer a
great deal with heat and mania but I am able to control it. I don't
get depressed that much even though I don't have a girlfriend or
any friends for that matter. I am still on the spiral staircase but I
am ascending one step forward every day.
A Crazy Guy Like Me
A
Crazy Guy Like Me
By
Dave A.
How
I Found Stability With Meds and the 12-Steps
I
was born in a shack my father built in Northern California in 1976.
My father was violent, mentally abusive, a heavy drinker and, as is
now apparently a schizophrenic. I dreamt of fighting him off when I
was young. I had resentment toward him yet a natural admiration that
looked for the good in him. My mother is bi-polar and began drinking
after my parents’ divorce. She did, however, quit drinking and
introduced me to 12-step help when I was a teen for my heavy drinking
and drug abuse.
My
schizophrenia started aggravating my psyche when I was about 15, most
likely triggered from heavy drug abuse. Along
the way, I started dating a sweet girl. We fell in love, yet she left
and I was devastated.
I began isolating and was tormented by horrible visions. Scenes of
violence would flash through my mind. When I returned to counseling,
my therapist suggested medication, which I did not feel was a good
natural remedy. In fact, I looked down upon medication as if it were
a street drug.
Not
too long after, I was institutionalized upon my family’s insistence
and my concurrence. Obsessed with my previous girlfriend, I continued
to grieve over her. Whenever I seemed to stop thinking of her,
someone would mention or ask about her, which I interpreted as God
indicating her eventual return to me. After several trials and
disruptions in medications, the majority of my psychosis involved my
imagining this former girlfriend was with me. I knew she was not,
however, I felt happier thinking she was somehow with me in spirit.
My writing and the music I listen to is much inspired by this woman.
I
have not drunk or used illegal drugs since I was 21. I am 38 now and
feel I have made a strong effort to do well in this life of illusion.
I met Dan Frey (editor of NYC Voices) when I was about 23, and whom I
consider a good friend, although we have not been in close contact
for years. His efforts to support my musical shows are still
appreciated.
Since
I was 21, I have done my best work with psychiatric practitioners,
having been in hospital psych wards once a year until about eight
years ago. The threat of psychosis has alleviated over time and I
value my freedom with the assistance of outpatient care. I would,
however, do inpatient again if needed, and have considered it on
occasions when I struggled the most.
I
have schizoaffective type 2, which means I have struggled with
depression throughout my life.
I continue to enjoy good times as well. The twelve-step program has
taught me to find esteem in service, in hopefulness and faith in
healing for the sake of others, as well as myself.
I
can no longer drink or ingest the sickening amounts of sugar designed
by junk food companies. Due to my borderline sugar levels, I cut soda
and other sugary drinks out of my diet. I still acquiesce sometimes
with chocolate, but not like I used to. I don’t know for certain if
I have fallen prey to Zyprexa's tendency to create sugar reactions,
or to the junk food industry. Either way, I now regulate my diet more
consciously.
I
bring a 12-step meeting into the psych ward down in the valley once a
month. If I get the apartment I’ve been eyeing, I’ll be just a
block away from the psych unit and my plan is to begin weekly
meetings. I have a sense of accomplishment having done the same with
the hospital back east years ago.
Currently,
I live in the mountains of Northern California and have an
application pending for a low-income apartment down in the city’s
valley. I’m making an effort to enjoy my current life while looking
forward to having a mental health clubhouse about a half block away,
as well as other fun activities, when I get down there. Maybe I'll
meet a crazy lady who would understand a crazy guy like me.
I Used to Be a Dog Person
I
Used to Be a Dog Person
By
Connie Jean Conklin
What
I’m Learning From My Cats
I
used to consider myself a dog person. And then I realized using dog
as an adjective also applies. Like a dog, I did everything to please
my “owner” (whatever man was in my life, and before then, my
parents). I lived and enjoyed life when told to do so (i.e. “fetch”).
And I relied on my “owners” to take care of me (in my case tell
me what to think, feel and do).
I
had dogs in my life, too. And thank goodness! They listened to me and
loved me unconditionally. Dogs are the only reason I have any degree
of sanity today.
Now
I have cats, and boy is my life different!
I’ve
been learning to take care of myself. I now know what I want, need,
think and feel. And I express my thoughts and concerns in
co-dependents anonymous meetings, with friends that I now have, with
therapists, and in Facebook posts. And while I’ve had cats before,
I did not understand them then. But I think I’m beginning to get
the idea, not only to understand them, but to be a cat person.
To
a cat, playing is their number one priority. They enjoy their life.
They do what they darn well want to with little concern for what I
have in mind for them to do. They seem to care about me. They cuddle
with me, show affection for me, purr and respond to my requests, as
long as it’s not too inconvenient or interrupts their pleasure. But
they give up their enjoyment of life for nobody.
I
ask forgiveness from the cats in my life. I was incapable of
understanding them in the past. And while I still want a dog in my
life, I vow to be a better cat parent and cat person in the future.
At
age sixty-two, I own four hula hoops, a drum and two inner tubes. I
play in the creek pretty much every day throughout the summer. I
dance with my hula hoop at concerts on the creek most Friday nights.
I drum and hula hoop at community drumming every month. At this
mature time in my life, I have finally learned how to master the art
of play. And you know what? I accomplish much more now. I don’t
just “survive” in life, I know how to “live” my life more
fully.
I
have also founded an organization for adult survivors of child abuse,
called SEASCAT.org. Send me a friend request on Facebook saying you
read this article in NYC Voices and I will accept your request.
About an Individual Named Chrissy
About
an Individual Named Chrissy
By
Chrissy M. Strawn
Transforming
Challenges into Success
Chrissy
is an introvert. She likes to meet new people, but on her own terms.
She can be honest to a fault. She is a very bright interesting
person. She lives with her husband Lance who takes very good care of
her. He is also a great cook. Chrissy is an army veteran who gave
five years of service when she was found to have a service-related
disability, for which she now receives compensation from the Veterans
Administration.
She
has a diverse array of talents. She is a brass instrument musician,
and also a fourth degree black belt in karate. Her current major
activity in life is volunteering with NAMI connection groups, of
which she currently co-facilitates three. Every Saturday afternoon
she attends her home group with Lance.
Chrissy
is a photographer and artist. She had a long career as a telecom
technician that lasted 20 years. She is unable to work anymore due to
the disabilities she currently suffers. She has chronic back pain
from the hard work she did in the telecom business.
Chrissy
is a disabled person on the inside with borderline personality
disorder, adjustment disorder and more, but she shines when she is
talking to new people.
She
has seen her share of trouble. She was convicted in 1998 for touching
her daughter inappropriately, costing her a twenty year sentence. She
is currently on parole in Portland, Oregon. From her own point of
view, she is an acquired taste. She can be somewhat of a braggadocio.
But she likes to listen too.
Chrissy
is a very compassionate and empathic person. Caring and selective,
she is generous with those she calls friends, and does not take
friendship lightly. Helping people brings a shine to her life. A
transgendered individual who is male to female, she suffered great
gender dysphoria,
the
conflict between a person's physical gender and the gender he or she
identifies as,
during
the last years of her male existence. In 2004 she started her
transition from male to female.
As
of 2014, Chrissy is much more stable. She credits NAMI.org for her
current stability and continues to help others the best way she can.
She also took DBT (dialectical behavioral therapy) at the VA and
continues to receive therapy from her therapist while seeing her
psychiatrist on a regular basis. Chrissy has great empathy for her
fellow mental health peers. She took some classes to become a peer
support specialist and connection facilitator. Those courses include
peer to peer, peer support specialist training, and connection
facilitators course. It gratifies her deeply to assist others.
Chrissy
prides herself for her ability to stay calm in a dramatic situation.
As it is her role to help those in need, she works to calm and
understand what troubles her peers. It isn’t easy to be rational
when all hell is breaking loose. But that is what her job entails.
Peer support is worth it when the other person says “thank you”
or “I am sorry.” She loves the challenge and reward that comes
from helping others. She would encourage others interested in the
helping profession to check out their local NAMI office, who are
always on the look-out for able volunteers.
Advice
from Chrissy: For those who have mental illness, consider social
security disability. Though you may initially be denied, the vast
majority of people are denied the first time. Chrissy recommends
obtaining a social security lawyer. They specialize in the area of
helping those with mental health problems get the fiscal assistance
needed.
Chrissy’s
solid twenty years in the telecom business built up a large cache for
her to receive disability income. What you receive will depend on the
amount of cache accumulated while you were working. The more you
earned and the years you worked, the more that cache will be. Along
with SSD you will qualify for Medicare. That will take some of the
money you get for your benefit in order to pay for your portion of
Medicare. Get the support you need. Apply today with a social
security lawyer.
Saved by Imagination
Saved by Imagination
By Carl Blumenthal
A Memoir of Depression and Recovery by the Book
“Depression is a double whammy. Negative thoughts and feelings flood in. The positive dissolves in a sea of self-doubt.” During my depression from 2006 through 2011, including two suicide attempts, two hospitalizations, and two years in day treatment, I tried to cope by withdrawing from the world: quitting my job as a peer counselor, ceasing hobbies and volunteer work, avoiding friends, and limiting contact with family, except my wife, Susan.
Most painful of all, I suspended my part-time career as an arts critic. Penning hundreds of articles about writers, painters, dancers, musicians, photographers, and film-makers, I earned respect because unlike most critics I didn’t suck the life out of my subjects. Now writer’s block prevented me from living—vicariously.
My world shrank to the living room couch where lying down was the most comfortable and comforting position, both during the day while I listened to the radio and at night when I retreated farther—into sleep and dreams. It was like clinging to a raft of calm on an ocean of bad thoughts and feelings.
I maintained this fetal-like pose by avoiding as much stress as possible because undertaking the simplest task made me feel as if I suffered from a permanent case of indecision. Thus hygiene went down the drain even though I didn’t shower. Determining what to eat and how to prepare it required an appetite I lacked. And household chores seemed like opportunities to malfunction.
If my living room couch resembled a raft in a storm, I also tried to batten down all hatches to the outside world. I only left our apartment to get the mail before other tenants arose in the morning. Then I would throw away most letters from family and friends. I dreaded checking my email and browsing the Internet for fear I would have to respond to demands on my attention.
I let Susan answer the phone so she could say I wasn’t available. She shopped, cleaned the apartment, washed our clothes, did the banking, paid bills, and generally interceded on my behalf whenever the world seemed too oppressive. She took everything in stride just as she had raised her younger sister and brothers when their parents weren’t around.
If the psychologist at day treatment hadn’t been a book lover, I might never have started reading again. With the lending of a novel to me she overcame my resistance to the written word. Fiction proved too real, too raw, but non-fiction books on nature and history represented safe ground at first and room for growth later.
I also consumed a heavy dose of biographies about such heroes as the existential novelist Albert Camus; the Depression-era photographer Dorothea Lange; Beat poet Allen Ginsburg; radical folksinger Woody Guthrie; Thomas Paine, pamphleteer of the American Revolution; and the Belle of Amherst, Emily Dickinson.
In March of 2011, I was inspired by Jane Campion’s film, “An Angel at My Table.” It is based on the autobiography of Janet Frame, who survived years at mental institutions in the 1950s, enduring more than 200 electroshock treatments (ECT). She became New Zealand’s most acclaimed author of the 20th century.
My outpatient social worker challenged me to write about the movie. Despite my low expectations, I returned to her the following week with 40 pages of an incomplete essay, “Saved by Imagination.”
How I got carried away was as much of a miracle as Janet Frame’s recovery. Even when not pinned to a stretcher for ECT, Frame, like me, spent most of her time prone to despair. Cowering in bed on the verge of being carted away for a lobotomy, she is greeted by the asylum’s director with the news of her release because she has won a literary prize. As if escaping a firing squad she’s bundled into a taxi for the ride home.
Thanks to Janet Frame’s example, I had cracked a five-year writer’s block. She was the medium for the message to me that “recovery is possible.” With this weight lifted, I returned to the Brooklyn Daily Eagle, the newspaper for which I covered the arts. Since then I’ve been able to round out my life by doing the following:
relying on writing and other passions as if my life depended on them;
seeking help from peers who understand my struggles;
finding love in the advice of family and friends;
accepting that how well I do at work isn’t a criterion for manhood;
engaging in politics as a form of community responsibility;
volunteering as a way of counting my blessings; and generally
putting one step in front of the other as Elizabeth Swados recommends in My Depression: A Picture Book.
Editor’s Note: This is an excerpt from a longer essay to appear in the book Coming Out Proud published by the National Consortium on Stigma and Empowerment, Chicago, 2015.
By Carl Blumenthal
A Memoir of Depression and Recovery by the Book
“Depression is a double whammy. Negative thoughts and feelings flood in. The positive dissolves in a sea of self-doubt.” During my depression from 2006 through 2011, including two suicide attempts, two hospitalizations, and two years in day treatment, I tried to cope by withdrawing from the world: quitting my job as a peer counselor, ceasing hobbies and volunteer work, avoiding friends, and limiting contact with family, except my wife, Susan.
Most painful of all, I suspended my part-time career as an arts critic. Penning hundreds of articles about writers, painters, dancers, musicians, photographers, and film-makers, I earned respect because unlike most critics I didn’t suck the life out of my subjects. Now writer’s block prevented me from living—vicariously.
My world shrank to the living room couch where lying down was the most comfortable and comforting position, both during the day while I listened to the radio and at night when I retreated farther—into sleep and dreams. It was like clinging to a raft of calm on an ocean of bad thoughts and feelings.
I maintained this fetal-like pose by avoiding as much stress as possible because undertaking the simplest task made me feel as if I suffered from a permanent case of indecision. Thus hygiene went down the drain even though I didn’t shower. Determining what to eat and how to prepare it required an appetite I lacked. And household chores seemed like opportunities to malfunction.
If my living room couch resembled a raft in a storm, I also tried to batten down all hatches to the outside world. I only left our apartment to get the mail before other tenants arose in the morning. Then I would throw away most letters from family and friends. I dreaded checking my email and browsing the Internet for fear I would have to respond to demands on my attention.
I let Susan answer the phone so she could say I wasn’t available. She shopped, cleaned the apartment, washed our clothes, did the banking, paid bills, and generally interceded on my behalf whenever the world seemed too oppressive. She took everything in stride just as she had raised her younger sister and brothers when their parents weren’t around.
If the psychologist at day treatment hadn’t been a book lover, I might never have started reading again. With the lending of a novel to me she overcame my resistance to the written word. Fiction proved too real, too raw, but non-fiction books on nature and history represented safe ground at first and room for growth later.
I also consumed a heavy dose of biographies about such heroes as the existential novelist Albert Camus; the Depression-era photographer Dorothea Lange; Beat poet Allen Ginsburg; radical folksinger Woody Guthrie; Thomas Paine, pamphleteer of the American Revolution; and the Belle of Amherst, Emily Dickinson.
In March of 2011, I was inspired by Jane Campion’s film, “An Angel at My Table.” It is based on the autobiography of Janet Frame, who survived years at mental institutions in the 1950s, enduring more than 200 electroshock treatments (ECT). She became New Zealand’s most acclaimed author of the 20th century.
My outpatient social worker challenged me to write about the movie. Despite my low expectations, I returned to her the following week with 40 pages of an incomplete essay, “Saved by Imagination.”
How I got carried away was as much of a miracle as Janet Frame’s recovery. Even when not pinned to a stretcher for ECT, Frame, like me, spent most of her time prone to despair. Cowering in bed on the verge of being carted away for a lobotomy, she is greeted by the asylum’s director with the news of her release because she has won a literary prize. As if escaping a firing squad she’s bundled into a taxi for the ride home.
Thanks to Janet Frame’s example, I had cracked a five-year writer’s block. She was the medium for the message to me that “recovery is possible.” With this weight lifted, I returned to the Brooklyn Daily Eagle, the newspaper for which I covered the arts. Since then I’ve been able to round out my life by doing the following:
relying on writing and other passions as if my life depended on them;
seeking help from peers who understand my struggles;
finding love in the advice of family and friends;
accepting that how well I do at work isn’t a criterion for manhood;
engaging in politics as a form of community responsibility;
volunteering as a way of counting my blessings; and generally
putting one step in front of the other as Elizabeth Swados recommends in My Depression: A Picture Book.
Editor’s Note: This is an excerpt from a longer essay to appear in the book Coming Out Proud published by the National Consortium on Stigma and Empowerment, Chicago, 2015.