NAMI in the Community: Lifeline for So Many

This video, created by Barmont Productions for NAMI in Connecticut, shows in seven short minutes a smattering of some of the ways NAMI has made a difference in the lives of people living with mental illness, and their families and friends. In it, you will hear a small taste of why Ben Behind His Voices is dedicated in part to NAMI's wonderful work: education, advocacy, empathy and more.

As the host of this piece, I got to interview so many amazing people, and can only wish that the hours of footage we got might someday get re-edited into a documentary of 30 or 60 minutes, to pay homage to the many stories courage and love that I heard that day. Meanwhile - watch and enjoy!

http://www.youtube.com/v/zgPN7vnOd-Y

The Parents Network: Eyes, Ears, Heart and Soul

Yesterday I had the pleasure of swapping stories, issues and tips with Susan Schofield, Host of Bipolar Nation on LA Talk Radio, and her husband Michael, author of January First: A Child's Descent into Madness, and Her Father's Struggle to Save Her. (reviewed in my last post)

Sure,we were talking author-to-author, host-to-guest, but mostly we were talking parent-to-parent.

Here is the episode of the show where you can download or hear our conversation.

We need each other. I can't tell you how inspired, informed, and encouraged I have been by the hundreds of families I have met and shared with in the years since Ben's first symptoms. Some of these encounters have been at NAMI Meetings and Classes, some by e-mail, in media or live appearances, others in the pages of books.

Without you all, I don't know how we would have survived. Thank you - for the courage to speak up, the willingness to ask questions and fight, the empathy to reach out.

This is what I hope to give back to you in the pages of Ben Behind His Voices, and in meeting you too.

Together we can make a difference. My favorite cliche - because, like many cliches, it is true.

What Else is New?: Research, Reviews, Presentations

Quick Updates: (1,2,3...)

1. Ben Behind His Voices Comes to New York City!

Reserve and Come to Free Event!

Venture House, Inc. sponsoring this awareness raiser - hope to see you there!

On September 20th, 6 PM (reception) 6:30 PM (Book Reading and Discussion) -

Zucker Hillside Hospital - 266th St. and 76th AveG
len Oaks, NY 11104

reserve your (free) seat at events@venturehouse.org

(Venture House is a clubhouse programlocated in Jamaica, New York City that provides services to adults with mental illnesses) 

2. 4HealingHearts Radio show - Conversation about Mental Health, Hope, Info, and Empathy - 8/3/12

have a listen here! or here's the link to download it

Listen to internet radio with 4healinghearts on Blog Talk Radio

3. More BBHV Reader Reviews: Thanks!

Thanks to the BBHV Readers on Goodreads for rating and reviews, including these:Kathy says: What an amazing book! Very informative, but above all, the love the author has for her son, Ben, shines through - even when Ben is feeling his worst... I highly recommend this book to anyone, if only to learn more about mental illness & how it changes the life of the person who has it & the lives of his family & friends.

Leslie: "Wow. So humane. So moving. This is going to be the first book I recommend to therapy patients and families dealing with schizophrenia. "

btw, Goodreads is a terrific site for those of us who love to read. Check it out!

Schizophrenia, James Holmes, and Hindsight

I think the psychiatry career of  Dr. Lynne Fenton may be over.

Worse than that, she must be questioning whether she could have done anything to prevent the "Batman shootings" in Aurora that killed 12, and wounded many others.

James Holmes: Schizophrenia?

So it leaks out that shooter James Holmes has been in "treatment" for schizophrenia. Big Duh. It was only a matter of time before that was revealed, sadly.

The question, though, is this: what kind of "treatment" was he getting?

Holmes in court

According to this PBS Report, and interview with CAROL LEONNIG,  of The Washington Post

"(New information) shows that James Holmes, the lead and only suspect in this shooting rampage in Aurora, Colo., was seeing a psychotherapist or psychiatrist in his university where he was a graduate student. She was a very senior psychotherapy director, basically the medical director for the outpatient clinic for mental health treatment for students.

And she was seeing him for some time before this tragic event...Lynne Fenton is the doctor in the case. Her specialty and what she has been mostly researching is schizophrenia."

What has yet to be revealed is whether or not Holmes was taking medication for his schizophrenia, and whether he should have been committed to a hospital stay - whether he "wanted to" or not - if there were any signs of this possibility of violence.

Could Treatment Have Prevented the Tragedy?

This leads us to the issue of "Assisted Outpatient Treatment" well-covered by the Treatment Advocacy Center - so I will say no more about that in this post.

But there is also the issue of James Holmes' family life.

Grief in Aurora

There are those who will point to his parents as the "cause" of his actions - yes, still. But I know all too well how the best parents can feel powerless in the face of schizophrenia - especially in the absence of support and education.

The Grief of Countless Families

Check out this Open letter  "To the parents of James Holmes: Our son has schizophrenia; we know how hard it can be" . In it, the family expresses first-hand empathy for the confusion and chaos that schizophrenia can bring to a family.

and this was my response (among many other comments)

Dear Margaret - and family - Thank you for this empathetic, beautifully written open letter. There will be those who do not believe your point of view; perhaps, before my own son Ben developed schizophrenia, I might have been one of them.

But no longer.

Ben is 30, and we have been through the same confusion, shock, grief, and anger as you. Eight hospitalizations later, a few of them as relapse during the recovery period that began when Ben's meds began to restore his brain at last (not completely, of course, but enough to allow a slow thaw from his "frozen in time" state), we are grateful for every small step Ben takes to find a new normal for his life.

He has a job, goes to school and does well, and can - at last - take family trips with us with little fear that his behaviors will scare flight attendants.

It has been a long road, and we still monitor Ben's medications - because in two days without them he will wind up back in relapse. I wish he didn't need them - and perhaps, as he ages, this may change if he is carefully monitored - but right now he absolutely needs this treatment - medication, support, structure, community, purpose and love.

Perhaps if James Holmes had had treatment that works - involuntary, if necessary - this could have been prevented.

My heart goes out to you, and all affected by this senseless tragedy - including the Holmes family, and even James himself.

We are lucky, perhaps, to have Ben back in our lives in such a positive way - but I know that we were helped immeasurably by education (especially the Family-to-Family program at NAMI, and even the website communities like HealthyPlace that provide info and perspective) and by the stories of others - which is why we wrote our memoir, Ben Behind His Voices (which included some resources that saved our family) -Thank you for sharing your story and perspective. Perhaps it, too, will make a difference.

best,
Randye

Depression out of the Closet: The Boss too

Add Bruce Springsteen to the list of celebrities willing to talk about their mental issues.

Springsteen talks about his lifelong battles with depression in a 16,000-word New Yorker profile hitting the stands this week.

Every time someone in the public eye is willing to talk about mental illness, the door opens to acceptance just a bit more, and stigma is dealt a blow.

Ben and I are trying to do the same thing with our  book. This week I was thrilled to present "Listen Up! Hearing the Family’s Perspective on Illness " as Interdisciplinary Grand Rounds at Bridgeport Hospital, and honored to receive this feedback:

"I truly appreciated your candor, your humor, and your heart in speaking on this topic. I'd like to think I pride myself on empathy and compassion with all my patients, but I know after hearing you speak, I will double my efforts, all around, no matter the condition.  Thanks again for a really worth while and inspiring talk."

To touch another person like that - well, that's the reason I wrote the book and speak out. Thank you.

Yes, right now it is mostly my crusade as Ben's Mom - but someday I hope that Ben will speak out too. I see signs of acceptance in him, but I know he is not ready to say, in public, that he has schizophrenia. That's okay. I will take what we've got, and I know what it takes. Patience. Understanding. Love. And some luck too.

Meanwhile - Thanks, Boss, for your courage and honesty.  You've kicked the door open another inch.

Schizophrenia and "Perception": Will it be Accurate?

Tonight TNT unveils a new series called “Perception” , in which Eric McCormack plays a brilliant neuroscientist with a full-blown case of schizophrenia.

According to the NY Times, here is the premise:

Colorful characters that only Pierce can see pop up to help him solve murder cases he consults on for his spunky F.B.I. buddy, played by Rachael Leigh Cook. These apparitions badger Pierce with what appear to be non sequiturs and useless information until the last 10 minutes of an episode, when the light bulb goes on, and the murderer is identified.

"Perception" and Mental Illness Stigma

Eric McCormack plays a neuroscientist in “Perception” on TNT. - JanThijs/TNT

The review goes on to say that this is "TV-Fantasy schizophrenia" - so what does that mean? The hallucinations are useful? Cute? Just a manageable feature of a slightly-eccentric personality?

Will the fictional Daniel Pierce take meds? Will he have had any hospitalizations in his past? Does his family stick with him? Does he have friends? Is he stigmatized at all by his illness?

Will this show help spread misconceptions about schizophrenia as a cute illness, handy for solving crimes, rather than an acute illness?

We will have to wait and see. I'm taping it tonight. I've suggested to Ben that he watch it too, but I can see that the idea made him uncomfortable. So that, too, will have to wait.

Richard Dreyfuss on Living with Mental Illness

Bravo, Richard Dreyfuss. Not only one of the best actors of our time, but he is speaking openly about his experience with bipolar. As reported last week in the Herald Tribune in this article by Barbara Peters Smith, Richard recently appeared in Sarasota, FL  to speak on “Living With Mental Illness” for the Mental Health Community Centers. The event was sponsored by the Sarasota Memorial Healthcare Foundation. 

In the accompanying interview, Richard says,

Dreyfuss:On an airplane the Delta magazine had an article about corporate executive depression. It said, “If you have any four of the next 14 …” and I had all 14.I got off the plane and called my psychiatrist and said, “we have to kick this into high gear. We have to start and get a solution. If we don’t, there really is no reason for me to go on.”

Herald-Tribune: About what time was this?

Dreyfuss: This was in the middle ‘90s. He said the wisest thing I’d ever heard. He said, “Richard, somewhere in your head is a faucet that is dripping either too quickly or too slowly, and we can help you.”  I can’t tell you the relief that lifted off my shoulders at that moment.

He goes on to share a lot of his experience, and his feelings about how the disorder has affected his life - from birth. Richard has joined the ranks of those of us - people affected by mental illness as well as those who love them - who refuse to feel shame or blame because of a physical illness of the brain. Someday, mental illness will receive the same respect (especially in research and availability of treatment and services) as other disorders. Each story, we hope, bring us closer to replacing stigma with understanding and a vow to improve the way things are.

Here is the comment I left on the site:

Thank you Richard, for sharing so honestly and openly. The fact that the medication that helped you the most was discontinued due to "lack of profit" is appalling. As the mother of a son who has schizophrenia (and I am so very proud of both my children, too!) I can tell you that while his medications are far from perfect, it is that  certain combination that has enabled him to stabilize enough to become an A college student and a valued part-time worker. As for our love? He always had that - but it is easier when psychosis is kept at bay.  The right medication can begin the process. Add love, support, purpose, community and understanding instead of stigma, and we've got a chance at realizing potential. I love your work - always have. And now I can appreciate what you may be going through as a person. Thanks for telling.
best, Randye Kaye
author of "Ben Behind His Voices:One Family's Journey
from the Chaos of Schizophrenia to Hope"

PBS AZ Opening Question: "Who is Ben?"

The interview for PBS in Phoenix, AZ last Thursday began with this wide-open question:
Who is Ben?

How to answer? Well -

different trees, same mental health issues

He's my son.

He is a sweet, loving, bright, caring, 29-year-old.

And - he has paranoid schizophrenia.

Very importantly, he is being treated for schizophrenia.

Here's how I answered this question, and the thought-provoking ones that followed, in this PBS interview on Arizona Horizon with Ted Simons.

In the same state where Jared Lee Loughner just lost his third appeal over forced medications, this is a very important distinction. My son, Ben, is in treatment.  Loughner, who killed six people and wounded former U.S. Rep. Gabrielle Giffords and 12 others in nearby Tucson just over a year ago, did so as a person whose schizophrenia had gone untreated for too long - and with disastrous results.

Here, in the state of Arizona where many still seem in a state of emotional disbelief over what happened in Tucson, the consequences of inadequate care and services for those suffering with mental illness seems even more obvious - and undeniably important.

In three days, I have made the rounds, courtesy of the Arizona Foundation for Behavioral Health (AFBH)andASU's Center for Applied Behavioral Health Policy, speaking in a community lecture, two media interviews, and meetings with NAMI as well as university students and educators in the field.

It has been a whirlwind - and I have met so many wonderful people who care about the issues that can make a difference for all of us affected by mental illness: people who have been diagnosed, those who love them, and the community they live in.

I have but one story to tell with full accuracy - our own - but I have heard many more in these few days. I hold tight to the belief that, one story at a time, shared without shame and empowered by education and courage, we can all make a difference in the way services for those with mental illness are funded, and to the laws that need to be passed to increase research, provide resources, and restore dignity and health to those who have been let down by the system that used to help them live a useful, dignified life.

Diagnosis, Schizophrenia: What Came Next?

Interview on Conn Jackson' show, Get Connected-- he on windy Manhattan (California) Beach, me in a nice warm studio in Manhattan (Big Apple). He asked some great questions, and allowed me to highlight the importance of therapeutic alliance, NAMI, early detection, reduction of stigma, support and education for families, and the importance of love and hope.

Thanks, Conn! Here's what he had to say about the interview on YouTube:

"Watch as Randye Kaye, author, tells us about her son's struggle with schizophrenia and how she helped him though it. Why is Randye's secret advice? Watch and find out!"

Satellite Media Tour: Tales from the Virtual Road

Wow. Last Tuesday, all from the comfort of the Murray Hill Studios in NYC, I had the privilege of appearing all over the country thanks to the magic of Satellite - and a fabulous make-up artist didn't hurt, either.  Here's one interview that aired on Fox News (.com).

Since Peggy Ann couldn't see me at first, she thought I was a "he" at first - a problem my mother tried to solve by spelling my first name with that "e" at the end, ages ago...) - but then, of course, I countered with my own slip-up, calling her Betty Ann. Not on purpose, I swear. After several interviews in a row, the brain tends to freeze a bit like an overworked computer.

This was a fair and neutral interview, although that word "unfortunately" did creep into her medication question. I think I handled it fairly, though. What do you think?

Connecticut Style, WTNH: Interview with Jocelyn Maminta

Jocelyn Maminta is a wonderful journalist and talk-show host - and our paths have crossed many times throughout the years. During my years as a radio personality,  speaker and now author, we often appeared together at local events, and I've had the privilege of hearing about her personal inspiring project, Caroline's Room. She is a skilled newswoman, warm and genuine person, and a fellow working Mom.

Today Jocelyn interviewed me for WTNH's daytime show, Connecticut Style. Thanks to all involved for the chance to share our story and increase awareness of Ben Behind His Voices, as well as the reality and hope it contains.

Ben Behind His Voices: wtnh.com

Mental Health Awareness: Don't Let it Stop

As "Mental Health/Mental Illness Awareness Week" draws to a close, I open with the hope that awareness will continue. It must. We have come so far, but there is a long way to go.

With luck, Ben Behind His Voices will do its part to help spread that awareness. Last week I did a "radio interview blitz" - 20 interviews in a row! - and a frequent question was about why I wrote the book.

I'm going to let Amy Barry, award-winning columnist for "Parent's Eye View" in Connecticut, answer that question in this excerpt from her recent article, Book Dispels Myths of Mental Illness (click on the title to read full article). Thanks to Amy for asking the right questions, and framing them so beautifully with her own words.

More than a decade ago Congress declared the first week of October Mental Awareness Week to draw attention to the efforts of the National Alliance on Mental Illness (NAMI), an education and advocacy group that aims to "change hearts, minds, and attitudes" about mental illness on a grassroots, community level.
Sadly, we still have a long way to go in accurately diagnosing, treating, creating empathy for, and reducing fear of those who suffer with mental illnesses, despite the fact that illnesses such as schizophrenia are estimated to strike one in 100 people worldwide.
The recently published "Ben Behind His Voices: One Family's Journey From the Chaos of Schizophrenia to Hope" by Randye Kaye is an intimate, honest, heart-wrenching story of a mother and the son she adores slipping away into the throes of mental illness. (The name Ben is fictitious to protect her son's privacy).

She says her background as an actress and performer makes her a storyteller and helped her write this book."

It gave me the capacity to step outside the story and tell it," she says. "I think we learn best through stories. You can make the point and teach the facts, but if you don't illustrate it with stories from your life and experience, people can't connect to it."
Kaye's hope is for the story to be gripping and for people to care about "the characters" and also get helpful factual information, which is included as chapter guideposts.
She says she didn't write the book for herself - she had already spent a lot of time processing the grief of having a child with a mental illness."

The fantasy that nothing can happen to your kid gets shattered - and it's a really tough piece of glass to shatter," she says. "I wrote the book for parents so they wouldn't feel alone, and I wrote it for providers (therapists, school psychiatrists, social workers), so when they meet them - which is usually at the end of their rope - not to judge them, and to allow the families as much as possible to be part of the recovery. I also wrote it for my son - to increase understanding and reduce stigma for those with mental illness. Until we understand it, we have no idea how much courage it takes (someone like Ben) to get up and have a day."

Mental Health Issues: Lessons from the Talk Show Circuit

audiobook in CD format

In six days, Ben Behind His Voices will be officially released (audiobook version, too - preview it here!), although according to Amazon stats there have been healthy advance sales of the hardcover and kindle versions. So it's out there! But, to spread the word, getting the media interested and involved is a huge help - and it's definitely a live-it-learn-it series of experiences for this author.

So far, as far as print, radio and TV go:

a handful of BlogTalkRadio interviews - great hosts, interesting conversations, not sure who listens but I hope there's a reach.  Archives exist.

The Positive Mind on WBAI inNYC with Armand DiMele. Hour-long, insightful interview with genuine back-and-forth conversation. You can hear it on the "Press" page on this site or on Armand's website.

Interview segments on other radio shows such as Kathryn Raaker's Let's Just Talk, airing on several stations. July 9th segment 1, if you're checking the archives. Kathryn was genuinely interested, as she could personally relate from her own family experience. Great prep, great passion for sharing the message.

Boston Globe interview appeared in print last week - done over the phone, all I had to do was talk. Bloggers have also "interviewed" me by asking questions in writing, to which I responded also in writing- essentially writing my own article, I guess, though interesting  answers can only come out of good questions, yes? (links are on Press page too)

This week I drove to Washington DC to appear on "Let's Talk Live", a local ABC-affiliate daytime talk show.  If you check the archives/blog of that show (9/7/11) you'll see our segment did not make that cut. What did? Plastic surgery and the "Blondes vs. Brunettes" female football game (For a good cause, so not frivolous. But still). Hmmm.

Then I went to tape an interview for PBS show To the Contrary. So my six-hour drive was not pointless. My experience there is detailed in my article for HealthyPlace.com. It made me think, that's for sure. They wanted to know if the book brought anything new to the "mental illness issues" table. In my own personal car-talk on the way home, I found the answer. Yes, what we bring to that table is our story. That's what sets us apart. Of course, we tell the story for many reasons - reduce stigma, increase understanding and respect, advocate for earlier detection, better services, more research. Yes. All that. But if the story grabs you, then Ben and our family will live in your heart, where you might become more aware of these things. That's our real "angle": the human face of the "issues."

More media opportunities ahead - but each is its own experience. Yes, lessons abound. And we've just begun!

Nurse Jackie and the Effect of Meds

Nurse Jackie on Showtime

If you watch Nurse Jackie on Showtime, you know that her daughter Grace, age 11, has been suffering with an anxiety disorder that has her heart racing, fears escalating and thoughts rushing.

On this week's episode Grace asks to be put on medication, and her therapist and family agree to try it.  Jackie sits with her daughter as the first pediatric (low) dose of Xanax kicks in, and asks how she feels.

Grace talks about how she can feel her heart slowing down, and how she is starting to feel that she can say  "No!" to the many ideas that are all demanding her attention. The ideas are still there, she says, but she now knows she has the power to ignore them if she chooses to.

I imagine that, for Ben, this is what his medication does for him.  I know he is far from "cured", but when he is stable on his medication he seems to have the power to turn the volume down on all that goes on in his head, and turn his attention to the outside world.  Wothout the meds, the struggle is evident - and he usually loses the fight.

For nurse Jackie, who is addicted to narcotics, these pills are drugs.  For Grace, they are medications, meant to balance what is off-kilter in her brain.

If I hear anyone - ever - say that we are "drugging" our children, I hope they know the difference.  These purists have never spent hours in the Emergency Room admitting an ill relative, I'll bet.  I don't wish it on them, either...but while medication isn't the only component in a good treatment plan, it often is the cornerstone of it.  It's about getting closer to the balance that should exist in the brain.  (I was going to stay "restore the balance" - but the medication has yet to be developed that can get that far, at least with schizophrenia).

So - no judgment, please. And kudos to the Nurse Jackie team for addressing this issue with sensitivity and balance.

Schizophrenia Recreated in a Computer

How does schizophrenia develop in the brain?  What happens? Dr. Ralph Hoffman creates "hyperlearning" in computers, which then recalled stories as a schizophrenic patient might.

Hear the interview here.

"Reporting in the journal Biological Psychiatry, researchers write of modeling schizophrenia in a computerized simulation of the brain's connections, called a "neural network." Yale psychiatrist Dr. Ralph Hoffman, an author on the paper, discusses what his team has learned from the model."

Why? To learn.  If we'd never gone into space we'd never have the global networks we enjoy now.  To my mind - and for the 1 in every 100 people who are diagnosed with schizophrenia - the more we learn, the better.

Research is vital to understanding - and to eventually finding a cure.  We'll get every dollar spent on research back tenfold if those with mental illness can truly recover.

Schizophrenia Awareness Day: May 24, 2011

Schizophrenia Awareness Association

The Schizophrenia Awareness Assocation (SAA) in India has declared this day Schizophrenia Awareness Day. Schizophrenia affects one percent of the world's population. Not just in the United States; this is an international statistic. The Times of India has a wonderful article today, talking about recovery and the need for family and social support. Oh yes. Indeed. One quote: 

"Integration of schizophrenics into the mainstream society and spreading awareness on the mental condition is important for normalcy to return. Isolation should be avoided at all costs."

Community Matters

Oh, how true this is - and how tested it has become here in our family this week.  Ben has, in the space of one month, continued at his new job (his first job in eight years), finished his six credits in college (final papers and projects), and moved into his own apartment.  That's a lot of change, and a lot of stress.  So far, so good - almost.

Families who remain involved in their loved ones' recovery know this: let go as much as you can, and keep your eyes open for signs of relapse.  This is, always, the delicate balance. So - when Ben moved from a group home (with eight housemates and 24-hour staff support) to a supported studio apartment (with med supervision a four-block walk away, and no community handy) this month, I had my concerns.  Oh, yes.  I do want him to take (and enjoy) responsibility, but as always medication compliance is the foundation upon which this success rests - and, of course, the emotional and social parts of his treatment plan.

Families know the signs of potential relapse, believe me.  In Ben's case, one day cheeking the meds shows up in his personality: he gets too energetic, tries too hard to engage. His voice goes up in pitch.  I saw this happen this week, so I went in to action: called his new caseworker, visited the weekend staff at the office, and reminded them all: Watch him. He doesn't want to need you, but he does.  Make sure he takes the meds, and that they stay in his system.  Oh, the tricks he can play.

Today he is back to normal.  Mission accomplished - for now. That was a reminder I'd hoped to never see again: that Ben needs the medication to continue to on this amazing path in recovery.  And, he needs his community: family, friend, providers.  He may never agree that this is so, but for now I will be the watchdog.  Thank goodness he has caseworkers who will take me seriously.

This is a team effort.
More from the article in Times of India:

On bringing the patient back into mainstream society 

* Proper medication, family support, therapy and rehabilitation is important

* Psychotherapy, cognitive behaviour therapy, group therapy and family therapy are required

* Rehabilitation through workshops at support group meetings and at rehabilitation centres is necessary

No matter where you live - this is true. Together we can help each other.

Glee and the missing mental illness: schizophrenia

Dear Glee writers:  I truly applaud your script this week, where Ms. Pillsbury finally comes to terms with her OCD. Dr. Stephanie Smith blogs beautifully about this here.

I loved the way Glee handled OCD in this episode- the stigma, the symptoms and the road to treatment.  My only bone to pick: the psychiatrist played by Kathleen Quinlan - I'm assuming her vocation, as she was able to prescribe the SSRIs for Emma - spoke beautifully about acceptance in mental illness, mentioning every diagnosis except for schizophrenia.  That, too, deserves an open forum.  Come on, at least give it a mention!

Still, it's a start.  Thanks, Glee. Someday maybe my Ben will may be proudly open about his illness. Maybe. But in the meantime, I'll remain thrilled that he is agreeing to treatment.  So far, so good.

May is Mental  Health Month! Here's a great resource for info at Mental Health America.

Bipolar Disorder on the Cover of People Magazine?

Well, Okay. So it's actually a gorgeous picture of Catherine Zeta-Jones.  Still, it brings one more mental illness into the light, with a matter-of-fact movie star who says it shouldn't be a big deal. I wrote my first-ever letter to the editor after reading this week's issue, which also contained a similar admission from Disney darling Demi Lovato.In case it doesn't make it to print (hey, I tried), this is what I wrote:

Dear Editor,

The best kind of applause to both Catherine Zeta Jones and to Demi Lovato for their courage in refusing to be ashamed about an illness that just happens to affect a body organ known as the brain. As Zeta-Jones so beautifully put it, “There is no need to suffer silently and there is no shame in seeking help.” And Ms. Lovato has, I hope, inspired others of her generation to be open and accepting of their diagnoses and the treatment that helps. As the mother of a wonderful kid who developed schizophrenia in his late teens (a common timetable for those with gradual-onset schizophrenia), I look forward to the day when my son – who, by the way, is in recovery with the help of treatment, patience, and love – and others with schizophrenia can speak as openly about their illness as well. While bipolar disorder is essentially a mood disorder and schizophrenia’s cluster of symptoms is more accurately described as a thought disorder, there are many areas in common. The greatest- and most shameful – of these is the presence of stigma. One day I hope my son – and the many others who have a diagnosed mental illness – will receive the same amount of respect, understanding, acceptance and research dollars as those who have illnesses that affect other organs of the body. Once again: brava, ladies! 

Randye Kaye
author: Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope(Rowman & Littlefield, summer 2011)Family-to-Family teacher and trainer for NAMI (National Alliance on Mental Illness)

Marijuana and Schizophrenia: another view

The latest fad in schizophrenia theory: marijuana caused it. Yet another finger to point, to create the illusion that it is somehow the "fault" of the person who has the illness. Here's an intersting article that tells another side of the story: Marijuana and Schizophrenia: Cause or Therapy?

De. Phil Leveque begins with these words: "This story is engendered by an article in TIME Magazine Feb. 21, 2011 entitled Pot and Schizophrenia: A Dangerous Mix. To put it mildly, TIME is full of crap and so are the authors of the medical article from the University of New South Wales in Australia. It states they reviewed 83 studies and found that POT smokers who developed psychotic disorders did so 2.7 years before non-smokers. The medical article is very suspect and I will try to explain why."

I wrote to Dr.Leveque:
"Thank you! Finally, another view to the newly-popular 'marijuana causes schizophrenia' theory. As the mother of a son with schizophrenia, educator with NAMI, and the author of a memoir that we hope will spread understanding and hope re mental illness, I applaud you for your article in the Salem-News.

It has been my understanding that my son began to smoke pot as a reaction to his illness, not the other way around. Schizophrenia is nobody’s fault. Many who don’t know better will grab at any explanation so that they feel we have some control over who “gets it” and who is spared. The only thing I know for sure is that early detection and treatment can help avoid psychosis, and therefore provide a better prognosis for recovery. But my son did not 'cause' his own illness, through marijuana use or anything else. Thank you for refuting the Australia study.

If you need any comments from a Mom/author who has been through it – and whose son is currently living a full (and clean/sober) life, despite his illness, please feel free to contact me.

Thanks again,
Randye

Randye Kaye
author: Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope(Rowman & Littlefield, summer 2011)

Can Schizophrenia be Prevented?

If you want the facts and latest news about schizophrenia and the people affected by it (those who have been diagnosed and the people who love them), I highly recommend two amazing websites: http://www.nami.org/, and www.schizophrenia.com.

NAMI has taught me that there are nine stages of emotional response for the families of those with mental illness. Whether you are in an earlier stage like crisis/chaos, a middle stage such as anger/grief or a later stage such as understanding, information will - immediately or eventually - help to empower you.

Click on the address or title for the links to each website - NAMI's home page, and a new article found on schizophrenia.com about prevention of schizophrenia.

Preventing Schizophrenia
One of the messages in my book Ben Behind His Voices:One Family’s Journey from the Chaos of Schizophrenia to Hope is that early detection is vital. Articles like this help us know what to look for, much as we may not want to see it at the time. Much research suggests that prevention of psychotic breaks can avoid the destruction of brain matter. I encourage you to learn all you can