For a living, I make people laugh (radio broadcaster, VO talent, emcee, stage actress). My hobby? Neuroscience. It actually comes in quite handy, and not just in understanding my son's schizophrenia.
From the "Neuroscience 2010" symposium at Yale yesterday: Kay Jamison Redfield (An Unquiet Mind), award recipient, reminding us that love makes a huge difference in recovery. Re her late husband: "My rage was no match for his wit." How often it helps to keep a sense of humor, even in the middle of a loved one's crisis. Sometimes it's all you can do to locate your own sanity.
Big topic: early detection, possible prevention. According to John Krystal, MD, Chairman of Psychiatry at Yale School of Med, "brain changes associated with psychiatric illness can be prevented and reversed." Another presenter warns us that "mental illness is like paraplegia of the brain - we can't change that it happened, but how we deal with it can make all the difference in quality of life." Hope, realism, acceptance - all echoed in one morning.
But, clearly, if full psychosis can be prevented by alert professionals and family members, the outlook is better. More understanding, less judgment, more hope. Keep funding research, please!
Monday, April 12, 2010
Friday, April 2, 2010
Ben Behind His Voices - further out of the shadows
Claire Gerus, my wonderful literary agent can be contacted at cgerus@comcast.net. The original titles of this memoir represent some of the changes we've gone through as a family since its original draft as To Hell and Half way Back, and first revision as No Casseroles for Schizophrenia: Family Lessons on the Journey to Acceptance. Present title: Ben Behind His Voices: One Family's Journey through Schizophrenia to a New Normal .
And, indeed, the "new normal" remains in progress - but there is happy news. One of the reasons I wrote this book is to provide a vision of hope for families devastated by mental illness. Many of the chapters spell out, all too realistically, the years of confusion and chaos, with sidebars of information I wish I'd had before Ben's diagnosis. And we all know that recovery is hardly a straight, predictable road. But - recovery is possible, with a combination of realistic expectations and persistent watchfulness and hope.
Before the symptoms emerged in mid-adolescence, one of Ben's most endearing qualities was his way with children - warm, insightful, loving. He was a sought-after babysitter and remarkable tutor.
We lost all that under the illness for many years. If you have gone through this in your family, I don't have to explain this any further. But - Ben is still there, indeed, behind his voices, and he is emerging from the shadows more and more, with each day he stays on his meds. This week I got to observe him teaching an art project to pre-schoolers (a homework assignment for a college class he's taking). I saw, for the first time in years, reminders of the patience, creativity and understanding he used to have with kids.
It is possible. It's not perfect, but it's possible.
And, indeed, the "new normal" remains in progress - but there is happy news. One of the reasons I wrote this book is to provide a vision of hope for families devastated by mental illness. Many of the chapters spell out, all too realistically, the years of confusion and chaos, with sidebars of information I wish I'd had before Ben's diagnosis. And we all know that recovery is hardly a straight, predictable road. But - recovery is possible, with a combination of realistic expectations and persistent watchfulness and hope.
Before the symptoms emerged in mid-adolescence, one of Ben's most endearing qualities was his way with children - warm, insightful, loving. He was a sought-after babysitter and remarkable tutor.
We lost all that under the illness for many years. If you have gone through this in your family, I don't have to explain this any further. But - Ben is still there, indeed, behind his voices, and he is emerging from the shadows more and more, with each day he stays on his meds. This week I got to observe him teaching an art project to pre-schoolers (a homework assignment for a college class he's taking). I saw, for the first time in years, reminders of the patience, creativity and understanding he used to have with kids.
It is possible. It's not perfect, but it's possible.
Monday, March 15, 2010
always a wrinkle: the problem with State Budgets
The wide spectrum of developments when your child has a mental illness.
Plus side -wonderful weekend with Ben. Family game of Boggle as we hunkered down in the rainstorm. Ben beat us all, soundly. His brain when balanced: amazing.
Minus side - Monday surprise: suddenly, the group home where Ben has been living for over five years has announced that Ben will have to leave soon; after all, they are "transitional housing". No matter that the other residents have been there even longer than Ben. Also, despite requests, his agency caseworkers have not moved at all in those five years toward getting him on a waiting list for another program. So now everyone will have to move on this.
If Ben were to live here at home while in transition (not a good move anyway, as I am a much better mother when I am not a policeman/caseworker too), it would mess up his benefits (meager as they are). This is what can happen when the State decides it has to make budget cuts that make absolutely no sense in the long run for those with mental illness who are STABLE. At last. Weigh the cost of supervised housing/stability to homelessness/repeated hospital stays. Should be a preventive care no-brainer.
Grrr.
Good news for the memoir, though! some interest!
Ben Behind His Voices: One Family's Journey through Schizophrenia to a New 'Normal'
represented by Claire Gerus Agency
Plus side -wonderful weekend with Ben. Family game of Boggle as we hunkered down in the rainstorm. Ben beat us all, soundly. His brain when balanced: amazing.
Minus side - Monday surprise: suddenly, the group home where Ben has been living for over five years has announced that Ben will have to leave soon; after all, they are "transitional housing". No matter that the other residents have been there even longer than Ben. Also, despite requests, his agency caseworkers have not moved at all in those five years toward getting him on a waiting list for another program. So now everyone will have to move on this.
If Ben were to live here at home while in transition (not a good move anyway, as I am a much better mother when I am not a policeman/caseworker too), it would mess up his benefits (meager as they are). This is what can happen when the State decides it has to make budget cuts that make absolutely no sense in the long run for those with mental illness who are STABLE. At last. Weigh the cost of supervised housing/stability to homelessness/repeated hospital stays. Should be a preventive care no-brainer.
Grrr.
Good news for the memoir, though! some interest!
Ben Behind His Voices: One Family's Journey through Schizophrenia to a New 'Normal'
represented by Claire Gerus Agency
Tuesday, March 2, 2010
Ben's Poetry, age 21
Seven years ago, before Ben's first hospitalization, he took a poetry class at a local community college. I look at his class assignments now and wonder how I could ever have doubted the seriousness of his illness. Where is the line drawn between creativity and complete inner chaos?
A sample:
A sample:
GOD
My wind grows weary
Monotony is thick
The rivers ain't clear
As I am stained by this thick...mud puddle
Whilst I bear my own radiance
Sinned they be by a typical DEMONstration
Of a casual world spoiled by love
And a casual battle and death from above
Preaching false ideas
Made right for hatred is doubt
And through this calamity I can hardly reach out...to you.
This short poem makes some sense, though many others did not. But - the "DEMON" in capital letters? His own radiance buried underneath thick mud? To whom could he not reach out? To God? To me? But I was there all along, and at that time he refused my love. What was I to do?
Sunday, February 21, 2010
Where truth, support, and hope began: NAMI's Family-to-Family Course
Now: Ben made the Dean's List again! The letter from our local community college confirms his status and adds, "It is a a very worthwhile accomplishment to have become one of our best students." For the first time in over a decade, Ben actually cares about his grades; there was a time he considered report cards a government plot to control him. Ten years ago, he was a high school dropout, refusing to discuss his future plans, wandering through our town streets because he "didn't like the stupid rules at home." Sometimes, then, he slept in the park. My son, homeless and hopeless. His family: confused, devastated, always at our wits' end.
Recovery takes time - and a lot more. So as we take this journey, I continue to teach (and train others to teach) a course for NAMI (National Alliance on Mental Illness) called Family-to-Family. This program - one of many offered by NAMI -saved our family by teaching me about mental illness and giving me the skills to deal with our new reality.
It was there that I learned the devastating truth that was necessary for the start of recovery: Ben truly did have a serious, and severe, mental illness. He was not "stubborn", or "going through a tough adolesence" - he was ill, and it wasn't his fault. What did that mean for us? For him? By opening my eyes to the facts, this course opened my mind to solutions.
I am forever grateful to Dr. Joyce Burland, who created the 12-week class, and to everyone at NAMI who continue to help bring it to families like ours. For free. Still, so many families don't even know what it is. I urge you to find out. Visit http://www.nami.org/ and find a wealth of free information, and a link to your local affiliate. Click on "education" and there you are.
Find NAMI. It's something you can do for yourself - -RK
Excerpt from Ask about Ben Behind His Voices: One Family's Journey through Schizophrenia to a New Normal. December2003 (for info on publication, contact Claire Gerus, cgerus@comcast.net, literary representation)
In my years in NAMI, I’ve met some unforgettable people. While Family-to-Family is strictly for relatives of people with mental illnesses, the support groups also include the “consumers” (the current term for the ones who have been diagnosed with the illness) themselves, those who are struggling with their own recovery and ready to accept and talk about it. There are support groups strictly for consumers too, but it’s amazing to sit in a room where consumers and family members share their experiences with each other.
I’ve met people with such courage, such insight, such humor along with so many losses. I’m constantly awed by their stories, with the things they’ve lived through and the actions they’ve taken. With heart. With determination. With unending, powerful love.
I’ve met families with riches and families on welfare. Families of many colors, religions, levels of education. I’ve met adult children who grew up having to chase their mother down the street while she was in a manic phase; wives who had to play Santa Claus when their ill husbands were suddenly hospitalized on Christmas Eve; brothers who have lost the sibling who once taught them to ride a bike; sisters who get twenty confused phone calls a day from the big sister who used to help them with their homework and is now living on the street but refusing help.
I’ve met people who spent their life savings, mortgaged their homes, drained their retirement accounts in order to try a new treatment for their relative, or afford a few months in a private facility that either seemed promising or was simply the only alternative for post-hospital care. I’ve met parents whose children were missing for weeks, sometimes years; husbands who had to chase down their wives, around the world or across the country, after a disappearance sparked by mania. I’ve met people who have lost their loved ones to suicide.
Many of the families I meet have other children – healthy children, “normal” children. Luckier children. Mental illness, contrary to embarrassingly recent thought, is not the fault of the parent. It is a biological illness of the brain. That fact - that proven, medical fact - is a major hurdle for many family members to accept, for it means two contrasting things: one - that you didn’t do anything wrong. The illness is not your fault; two – that your relative really, truly is ill. You cannot “fix” this any more than you could “cause” it. You have so much less control than you wish you had.
With that said, though, families find that there is still much that they can do to help. There is empathy, understanding, advocacy. There are limits to set, programs to learn about, ideas to set in motion. That help may or may not be accepted by your loved one, but in the meantime, you can – you must -help yourself. There is grief – so much grief, so much loss. But there is also hope. You must live your life in between the storms.
Recovery takes time - and a lot more. So as we take this journey, I continue to teach (and train others to teach) a course for NAMI (National Alliance on Mental Illness) called Family-to-Family. This program - one of many offered by NAMI -saved our family by teaching me about mental illness and giving me the skills to deal with our new reality.
It was there that I learned the devastating truth that was necessary for the start of recovery: Ben truly did have a serious, and severe, mental illness. He was not "stubborn", or "going through a tough adolesence" - he was ill, and it wasn't his fault. What did that mean for us? For him? By opening my eyes to the facts, this course opened my mind to solutions.
I am forever grateful to Dr. Joyce Burland, who created the 12-week class, and to everyone at NAMI who continue to help bring it to families like ours. For free. Still, so many families don't even know what it is. I urge you to find out. Visit http://www.nami.org/ and find a wealth of free information, and a link to your local affiliate. Click on "education" and there you are.
Find NAMI. It's something you can do for yourself - -RK
Excerpt from Ask about Ben Behind His Voices: One Family's Journey through Schizophrenia to a New Normal. December2003 (for info on publication, contact Claire Gerus, cgerus@comcast.net, literary representation)
In my years in NAMI, I’ve met some unforgettable people. While Family-to-Family is strictly for relatives of people with mental illnesses, the support groups also include the “consumers” (the current term for the ones who have been diagnosed with the illness) themselves, those who are struggling with their own recovery and ready to accept and talk about it. There are support groups strictly for consumers too, but it’s amazing to sit in a room where consumers and family members share their experiences with each other.
I’ve met people with such courage, such insight, such humor along with so many losses. I’m constantly awed by their stories, with the things they’ve lived through and the actions they’ve taken. With heart. With determination. With unending, powerful love.
I’ve met families with riches and families on welfare. Families of many colors, religions, levels of education. I’ve met adult children who grew up having to chase their mother down the street while she was in a manic phase; wives who had to play Santa Claus when their ill husbands were suddenly hospitalized on Christmas Eve; brothers who have lost the sibling who once taught them to ride a bike; sisters who get twenty confused phone calls a day from the big sister who used to help them with their homework and is now living on the street but refusing help.
I’ve met people who spent their life savings, mortgaged their homes, drained their retirement accounts in order to try a new treatment for their relative, or afford a few months in a private facility that either seemed promising or was simply the only alternative for post-hospital care. I’ve met parents whose children were missing for weeks, sometimes years; husbands who had to chase down their wives, around the world or across the country, after a disappearance sparked by mania. I’ve met people who have lost their loved ones to suicide.
Many of the families I meet have other children – healthy children, “normal” children. Luckier children. Mental illness, contrary to embarrassingly recent thought, is not the fault of the parent. It is a biological illness of the brain. That fact - that proven, medical fact - is a major hurdle for many family members to accept, for it means two contrasting things: one - that you didn’t do anything wrong. The illness is not your fault; two – that your relative really, truly is ill. You cannot “fix” this any more than you could “cause” it. You have so much less control than you wish you had.
With that said, though, families find that there is still much that they can do to help. There is empathy, understanding, advocacy. There are limits to set, programs to learn about, ideas to set in motion. That help may or may not be accepted by your loved one, but in the meantime, you can – you must -help yourself. There is grief – so much grief, so much loss. But there is also hope. You must live your life in between the storms.
Wednesday, February 17, 2010
Now and Then: Psychic Vampires on the Phone
When your child calls you, do you experience a moment of panic before you pick up? Even though your love knows no bounds? If your child has ever called you for help - the car won't start, he is lost, her boyfriend broke up with her - you know the feeling. If your child has a mental illness, you come to expect it - sometimes even when things are going well. Your comments are welcome.
Now. A text from Ben. It almosts always reads, "call me when you get this please" - and I become aware of an involuntary tightening in my chest. Will that knee-jerk reaction ever go away? These days, he often has good news to share: a theatre class he enjoyed, a good AA or NA group. But years and years of crisis calls leave their mark. Even in the recent years of recovery, there have been close calls, where only quick action had prevented a new hospitalization.
In the confusing years before the diagnosis - even before the calls began to come in from the police, my neighbors, or hospital Emergency Rooms - there were phone conversations with Ben like this one:
Then, 2001: (Excerpt from No Casseroles for Schizophrenia: Family Lessons on the Journey to Acceptance and Hope)
http://www.randyekaye.com/
Now it was March, and he was on the phone again, long distance (and collect) from Idaho. “Hi, Mom. How are you?” Ben had been calling me occasionally ever since he’d been kicked out of Waterfalls at the end of October. Sometimes he called every day; sometimes a few weeks went by before I heard from him. Recently we’d been speaking every few days. I never knew what to expect, what he would say.
“I’m fine honey. How are you?”
“I’m great, Mom.”
“That’s good.” Silence. Where do go from here?
"Mom?”
“Yes?”
”Do you know what a psychic vampire is?”
I stand very still and close my eyes to make this go away, like a child who doesn't want to see the milk she spilled. “A what?”
“A psychic vampire. ‘Cause they have them here.”
This was something I hadn’t heard from him before. What is he talking about? Then: What kind of drugs is he on? Then: Stay calm. “No, Ben. What is a psychic vampire?”
His voice took on that tone of superiority, and yet there was panic in it too.“They steal all your energy. It’s really scary. And there are psychic vampires here, I swear.”
I had no idea what to say to that. I think I assured him that you could prevent these vampires from stealing your energy if you wanted to. If he was on some drug, he probably wouldn’t remember this conversation anyway. But I certainly would. I added this conversation to the list of behaviors that were becoming weirder, and more frequent.
At first, after Ben left the program, he had called to ask for money, or to tell me which friend’s couch he was sleeping on. He reported looking for work, getting jobs, losing jobs within days. He called to tell me he loved me. He called to tell me that he was hungry and it was all my fault. Then, the weird calls had begun:
“Mom, I’m doing great! I spent all afternoon yesterday, walking by the side of the highway, and screaming. I feel so much better now. It’s good to get your feelings out.”
“I’m good, Mom, but I spent the night sitting on the roof and looking at the stars. They are awesome! Oh, and I sang to myself all night. It helps me concentrate.”
“Steve kicked me out, Mom. His Dad said I couldn’t live there since I l owe him so much money. But I think there’s a homeless shelter that will take me in. Then I’ll get a job while I’m living there and save some money and come home.”
And now, psychic vampires. What are the drugs doing to his brain? I was back to thinking that this was just a problem of substance abuse, that Ben had to learn from natural consequences. To do that, he’d have to hit bottom. Good and hard.
And yet, another thought kept growing: the theory that Ben might, after all, be truly ill. What if he hits bottom and is so impaired he doesn’t even know it? What if Ben had some kind of mental illness? So many people had talked me out of that idea in the past. “No, I’m sure he just needs therapy. Sobriety. Structure, discipline. To get closure with his father.” On and on went the theories, on and on went my hopes that this was anything but a real mental illness. Please let it not be true.
If only I could have willed it to be true, loved his symptoms away, I would have. But evidence had continued to pile up, even though I wanted to believe anyone who told be it didn’t, couldn’t, add up to something as serious as mental illness.
(for more information on this book and presentation, please visit http://www.randyekaye.com/)
Now. A text from Ben. It almosts always reads, "call me when you get this please" - and I become aware of an involuntary tightening in my chest. Will that knee-jerk reaction ever go away? These days, he often has good news to share: a theatre class he enjoyed, a good AA or NA group. But years and years of crisis calls leave their mark. Even in the recent years of recovery, there have been close calls, where only quick action had prevented a new hospitalization.
In the confusing years before the diagnosis - even before the calls began to come in from the police, my neighbors, or hospital Emergency Rooms - there were phone conversations with Ben like this one:
Then, 2001: (Excerpt from No Casseroles for Schizophrenia: Family Lessons on the Journey to Acceptance and Hope)
http://www.randyekaye.com/
Now it was March, and he was on the phone again, long distance (and collect) from Idaho. “Hi, Mom. How are you?” Ben had been calling me occasionally ever since he’d been kicked out of Waterfalls at the end of October. Sometimes he called every day; sometimes a few weeks went by before I heard from him. Recently we’d been speaking every few days. I never knew what to expect, what he would say.
“I’m fine honey. How are you?”
“I’m great, Mom.”
“That’s good.” Silence. Where do go from here?
"Mom?”
“Yes?”
”Do you know what a psychic vampire is?”
I stand very still and close my eyes to make this go away, like a child who doesn't want to see the milk she spilled. “A what?”
“A psychic vampire. ‘Cause they have them here.”
This was something I hadn’t heard from him before. What is he talking about? Then: What kind of drugs is he on? Then: Stay calm. “No, Ben. What is a psychic vampire?”
His voice took on that tone of superiority, and yet there was panic in it too.“They steal all your energy. It’s really scary. And there are psychic vampires here, I swear.”
I had no idea what to say to that. I think I assured him that you could prevent these vampires from stealing your energy if you wanted to. If he was on some drug, he probably wouldn’t remember this conversation anyway. But I certainly would. I added this conversation to the list of behaviors that were becoming weirder, and more frequent.
At first, after Ben left the program, he had called to ask for money, or to tell me which friend’s couch he was sleeping on. He reported looking for work, getting jobs, losing jobs within days. He called to tell me he loved me. He called to tell me that he was hungry and it was all my fault. Then, the weird calls had begun:
“Mom, I’m doing great! I spent all afternoon yesterday, walking by the side of the highway, and screaming. I feel so much better now. It’s good to get your feelings out.”
“I’m good, Mom, but I spent the night sitting on the roof and looking at the stars. They are awesome! Oh, and I sang to myself all night. It helps me concentrate.”
“Steve kicked me out, Mom. His Dad said I couldn’t live there since I l owe him so much money. But I think there’s a homeless shelter that will take me in. Then I’ll get a job while I’m living there and save some money and come home.”
And now, psychic vampires. What are the drugs doing to his brain? I was back to thinking that this was just a problem of substance abuse, that Ben had to learn from natural consequences. To do that, he’d have to hit bottom. Good and hard.
And yet, another thought kept growing: the theory that Ben might, after all, be truly ill. What if he hits bottom and is so impaired he doesn’t even know it? What if Ben had some kind of mental illness? So many people had talked me out of that idea in the past. “No, I’m sure he just needs therapy. Sobriety. Structure, discipline. To get closure with his father.” On and on went the theories, on and on went my hopes that this was anything but a real mental illness. Please let it not be true.
If only I could have willed it to be true, loved his symptoms away, I would have. But evidence had continued to pile up, even though I wanted to believe anyone who told be it didn’t, couldn’t, add up to something as serious as mental illness.
(for more information on this book and presentation, please visit http://www.randyekaye.com/)
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