Thank You, John Oliver. And I apologize.

Wow. John Oliver just summed up the problems with our mental health system in 11 minutes and 54 seconds - with plenty of room for punchlines as well. I know - seems like something that isn't humorous. But this segment provides more respect for mental health issues than so many others I've seen. Well-placed humor can do that.

Watch it here:

His opening statement, like all the facts in this comedy-in-truth piece, is correct:

"It seems there is nothing like a mass shooting to suddenly spark political interest in mental health."

Guilty as charged. My last post was, yes, sparked by yet another act of violence that I suspected would eventually point back to an unaddressed mental health problem in the shooter (and lack of support for his family). After receiving 2 comments which were too extreme to approve, I almost deleted the post today. It seems to have sparked stigma and judgment instead of the empathy and constructive outrage I had hoped to inspire.  But I will let it remain in this thread, because while I myself may have jumped the gun on "judging" this shooter with expectations that attention should have been paid to his mental health way before a crisis, I also know that such judgment harms people like my son, who lives in fear that people will find out he has been diagnosed with schizophrenia. (for the record, his name and identifiable facts have been changed in the book and in my posts, with his permission to tell the story that way)

So let's be reminded of the following facts, in Rolling Stone's coverage of the segment:

"The aftermath of a mass shooting might actually be the worst time to talk about mental health," he argues. "Because, for the record, the vast majority of mentally ill people are non-violent. And the vast majority of gun violence is committed by non-mentally ill people." The host cites a February 2015 report by the American Journal of Public Health, which states that "fewer than 5 percent of the 120,000 gun-related killings … were perpetrated by people diagnosed with mental illness."

Yes. Let's not stigmatize those with mental health issues every time a crime like this occurs. But also, yes. Let's pay attention to our broken system - and fix it. Segments like John's, factual as well as (weird but wonderfully true) entertaining, point the way.

The Stupidity of Medicare: Saving Pennies, Risking Lives in Mental Health Care

It took ten years for us to find a medication regime that not only works to help manage the symptoms of my son Ben's schizophrenia, but that he is willing to take consistently. Ten years.  Three of those have taken place after where our book, Ben Behind His Voices, leaves off - in what one reader calls "open-ended hope."  At that time, Spring of 2011, Ben was in a group home, stable for long enough to begin to piece his life back together, but still finding any possible opportunity to "cheek" his meds. He hated taking them, didn't think he needed them, was discouraged by the side effects.

Rebuilding Your Life with Mental Illness: Delicate

Finally, though, a few months after the book was published, Ben had a relapse (see Revolving Door post) and it took a lot of teamwork to get him back on the meds that work - teamwork that included Ben himself, and that's why it was effective.

What helped Ben to agree? There is a different form of one of his meds that was much easier for Ben to swallow, literally, and that he swears has no side effects. This is a liquid suspension that has to be created by the pharmacist. Does it have fewer side effects? Who knows? But Ben believes that it does, and that's what matters. He felt like - and was/is - a part of the decision that affects his life every day. The empowerment is definitely a contributing factor in Ben's adherence to his medication regime.

And now, the main medication that Ben takes is no longer covered by Medicare. At least not in the formulation that Ben is willing to take, in the formulation that he can tolerate. In order to save money, they will not cover the extra ingredients needed to create the liquid version. Pills do not work. He cannot take them, physically or emotionally. Without this specific form of his meds, Ben could lose every single thing he has fought for so long to achieve. His job. His social life. His car.

The result of the stability of consistency with his treatment? Ben has continued to rebuild his future; in fact, he has far surpassed the modest hopes presented at the end of my book. Yes, despite the severity of his schizophrenia (many doctors told me that his case is "very severe"), Ben not only continues to attend community college, but now has held a job as a restaurant waiter for ten months! He is one of the best waiters there, the only one who has customers come in and request to sit in his section.

He, also miraculously, has started to have a social life. He has friends. And he is driving a used car that he saved very slowly for. It's not fancy, but it has added to the fact that he is now feeling like a man. Though he now lives with us, he has earned the position of no longer feeling embarrassed by his life. Sure, he has to be home twice a day for us to supervise his medication, but it's a small price for us all to pay, for the fact that he is feeling good about himself, realistically, for the first time in forever.

All it takes, as we know all too well from experience, is two days without his treatment and he will be back in the Emergency Room, waiting for a bed in the psych unit. (This has happened eight times before.  Trust us. Only two days to go from employable to certifiable).

We Need Foresight, not Band-Aids!

So - I offered to pay for those extra ingredients myself. $80 per month. Not so bad - for me. But what if Ben were alone, no family to support him, living on the meager disability payments that are supposed to cover room and board but do not? Do you think he could find $80 per month? Can others in that situation? No. So the result would be: not taking the medication. It's one step off a very steep cliff - and the fall is not pretty.

Unfortunately, my relief that $80 per month (challenging to find, but we'd manage) would solve our problem was short lived. The pharmacy called back to tell me that it is illegal to charge me for part of a medication. We have to pay for the whole medication - hundred of dollars per month. The only other choice? He has to take the pills, and Medicare will only cover one formulation of those: the ones that Ben finds impossible to swallow. We do NOT have hundreds of dollars available per month after bills are paid. Most families don't. But what choice do we have? This is NOT FAIR - to Ben, or to us.

Why did Medicare make this coverage change? To "cut corners", to "save a few bucks." But, in doing so, they are risking - no, endangering- my son's life.

How stupid and shortsighted can you get? While Ben is not violent by nature, others with untreated schizophrenia can be. Or their intentions are good, but the "voices" convince them that violent actions will lead to the good outcomes they desire.

How many shootings in movie theaters do we need to know that we need to provide treatment for mental illness? How many news stories of untreated schizophrenia (despite desperate families begging for hospital beds, enough days of help, enough support for staying in treatment and taking steps to recover one's life and dignity) does it take to get smart? To provide support for a chance at recovery?

Deeds: “The system failed my son”

When mental illness goes untreated, lives are endangered. The lives of those living with the illness (who wind up in jail, homeless, or dead), and the lives of those they could hurt in the attempt to obey their hallucinations. Aurora: untreated mental illness. The attack and suicide of Senator Creigh Deeds' son Gus: no beds available in psych units for the help they begged for. Virginia Tech shootings, the Unibomber's plans, the list goes on and on.

Treatment could have helped them. Treatment could have prevented tragedy. Saving pennies is not the answer. Provide treatment, structure, community, and purpose: the four pillars of recovery I will explore in my next book, Ben Beyond His Voices.

Meds alone do not change lives challenged by mental illness. But, for many, they sure do help provide the stability that is needed to rebuild futures. Take this away from my son - or even change the routine - and his carefully structured rebuilt life can come tumbling down faster than you can say "tax break."  Too many federal and state budgets are cutting mental health funding to make the numbers look better. And look at what happens every single time you try that ploy. Lives are lost, and much more money is spent on the tragic results of this lack of foresight.

Prevention is cheaper than tragedy. Medicare, Don't be stupid. Let my son, and others like him, have the treatment they deserve. Give him back the meds that work. Let him continue to be the taxpayer he has fought so hard to become.

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

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.

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"

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?

BBHV's Readers react, review, and share

Psychology section, B&N

If getting a memoir from  inside your head to the shelves of Barnes and Noble and the Amazon inventory is like pregnancy, labor, and giving birth, then the process from that point is like raising a child: constant work, many possibilities and rewards, letting go of your baby and letting it find its way in the world. 

Every so often, though, I hear from a reader - someone I have never met face-to-face but who now knows my story in a surprisingly intimate way - and the journey my "baby" is on becomes real to me. These comments from former strangers, now readers, have touched me in so many ways, and have already made all the hard work more than worth it. Thank you for taking the time to write!

from a psychiatrist in Michigan:

" I received your book at a recent conference.  I just finished reading it:  it was amazing - I couldn't put it down! Thank you for the courage to tell your and your son's story - I am sorry you went through all you did until the correct diagnosis was made and Ben rec'd the help he desperately needed.  Your openness and honesty has reminded me again of the frailty of life, but also the hope that there is help.  I have referred many families to NAMI and your book and your commitment to this fine organization has confirmed my trust in their work."

from a mental healthcare provider in Connecticut:

"I just finished your book, and I want to thank you for this beautifully written text.  The love for your son comes through the pages so strongly.  There is not one ounce of blame towards the providers, who often feel helpless as well, yet also want the best for those individuals- and their families- who are facing the challenge of a mental illness."

Jennifer, a student, writes:

"I just finished reading your book.Your last chapter moved me to tears. I'm currently doing an internship at an acute care mental hospital and your book helps me to be optimistic and relate to each patient as a human being. I appreciate the honesty and hope you express in your book which I feel speaks to the struggles that all parents to different extents experience. "

Another Mom shares:

"I read your book this summer on my Kindle, and it really had a powerful impact on me. Your writing was so genuine and heartfelt, and I  have much admiration and respect for you. I appreciate how far you have gone to openly share your story, to take the stigma away from mental illness, to inform families of the resources available, to share the ups and downs of your family's struggle in such an warm, honest manner, and to commit yourself to helping others who are facing similar struggles. You are a truly amazing Mom and your story hit home in a gripping way, giving me much strength."

Keep writing, please - I love to hear from you!

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 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.

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)

Jared Lee Loughner,tragedy, and ignoring the signs of illness

Every situation is different, I know. I cannot sit here and write about any magic formula to have prevented the tragic incident that happened in Arizona, where Jared Lee Loughner caused so much heartbreak in mere moments. But the fact that keeps bouncing around in my head is this, from a promo for Diane Rehm's NPR show of 1/11/11 (worth a listen, definitely): "The National Institute of Mental Health reports six percent of Americans over the age of eighteen have a serious psychiatric illness. A look at the challenges of identifying young adults with mental disorders and why so many don’t get treatment."

Maybe, just maybe --- if there had been more understanding, better education, earlier treatment, reduced stigma, more supportive services for Jared, more support for his family --- maybe those people in Arizona would be alive today. I can't say for sure. But I know that, without the treatment that my own son Ben finally is accepting, and without the family love that stayed with us throughout all the chaos of his schizophrenia diagnosis and treatment, he could be off somewhere doing something horribly newsworthy. He might have commited suicide. He could have frozen to death in an Montana cold snap, homeless. He could be locked in a nursing home for the rest of his life. He could have...I can't even think about this anymore.

Right now, Ben is safe, loved, living in a group home, and doing well in school. Maybe someday he'll have a job. For now - it's good. It's very good. We love him. We have him.

Ben's nature, fortunately, is sweet, and he has never been violent, even in psychosis. But that is no guarantee that he would make good choices. Oh. No.

My hope is that Ben Behind His Voices, when published this summer, may open a few more eyes to the needs of consumers, families, and providers and agencies who so desperately need education, support, finances, housing, understanding, respect, and integrated treatment.

Legislators, on state and federal levels: Come on! Don't vote to save a penny in "services" that could lead to the much higher costs - in every way - of another incident like the one that killed so many lives and dreams.