Happier Made Simple™: The 7 Core Phrases and Mental Illness in a Loved One

In the decade since Ben Behind His Voices was published, I've had the opportunity to tell our family story to a lot of people - sometimes more than once, for it is ever-evolving.

If you love someone with schizophrenia, you know this all too well. It is a life lived like a never-ending game of Chutes and Ladders, with moments of rest here and there.

The question I am most often asked, after sharing, is this:

"How do you stay so positive?"

Well.

When Life is Challenging…

It isn't always easy, as you may well know. But - here's the thing that continuously reveals itself to me, no matter what the challenge:

Yes, living happier is a function of what happens to you - no one gets through life unscathed, after all - but it is, eventually, even more a function of what you tell yourself about what happens to you.

And so, I finally wrote a book about it, and it launches officially in a couple of weeks. 

In it, I talk about the "Seven Core Phrases" of self-talk that get me through most situations, and keep me hopeful, though realistic - and, yes, happier.

Yes, living happier is a function of what happens to you - but it is, eventually, even more a function of what you tell yourself about what happens to you.

It's how I "stay so positive."

Let me be clear (and I state it up front in the book) - I cry too.

Life isn't about constant happiness. That isn't even a goal. But neither is it about dwelling on the negative when the time for action has passed, nor about stressing about things that may never happen.

So here are the Seven Core Phrases (meant to be said to oneself, not as advice to others, please) and how they help me when our family deals with challenge or disappointment:

These phrases can set your mind down a different path of association and action. In case of severe trauma, you need to process the shock and emotions first.

Be Here Now:  I use this when my son is in a good place (enjoy this conversation; savor the moment; enjoy his company) - and when he is not (this is where we are right now - what action do I need to take?)

It Is What It Is: This gets me past the moments of regret (why didn't I see the signs earlier?). disappointment (why was my son robbed of a chance to go to college?), and doubt (why me? why him? why us?). There may be no reason for Ben's illness. It simply is. Now what?

We're All Connected: Other families are going through this too. Other people have the illness. Let's talk about it. Let's help each other. Let's reach out. Let's thank the people who have chosen professions that help us (lawyers, social workers, advocates, psychiatrists, etc.)

This Is Good: Savor the moments when the stars align, and your loved one can communicate, eat dinner with the family, etc. Yes, even during Ben's ten hospitalizations, when the phrase simply meant "enjoy the vacation from caregiving for now." We remember what we savor, and learn from what we regret.

All Will Be Well: Depends on how you define "well."  Will Ben ever attain his childhood dreams? Doubtful, at least right now. We learn to adjust our dreams. And I have no idea if the Universe has a "Plan" - but sometimes it helps to believe that it does. Whatever gets you through. As I say in my book: All will be well, just maybe not the way your expected it to be.

Isn't That Interesting?:  Curiosity, and even humor, can lurk underneath the trauma and crises. There have been times (especially when in the company of others who get it) where humor has saved me from crashing; when curiosity instead of complaining led me to learn more, do more, find another way.

Whatever Happens, I'll Handle It Somehow: This gets me through more times than I could ever list. Loving someone with schizophrenia means a lot of second-guessing, a lot of waiting to see if the meds work, if they'll come home, if they will be Jekyll or Hyde at the family dinner. So we do what we can to prepare, and hope for the best after that. This phrase gets me through the times where worry is unproductive.

Want the book? You'll find it now on Amazon, in paperback or kindle - but pssst! On launch day Feb 23 the kindle will be only 99 cents for a limited time! - and I am now working on the audiobook.

I hope it helps. Even a little.

Randye  

After Mental Health Treatment - What? Fellowship Place Gets it Right

Ten years ago, I toured a community with the following mission:

To serve adults living with mental illness by offering a full range of therapeutic support and rehabilitation services that promote independence, wellness, and a meaningful life.

This community is called Fellowship Place, and it represents what can happen when people come together to look past medical treatment alone - and add housing, purpose, structure, and community to the picture.

At the time, I wished Ben might be interested in living in such a caring, well-thought-out community. He wasn't. But now, ten years later, he is open to the idea.

The only problem is: it could take a decade before a place opens up. I wish I'd put him on the waiting list ten years ago. It might take that much time.

We need more places like this.

Hear why: 

Breakdown: The Right Title for a Much-Needed Book

I've often wondered what treating patients with SMI (Serious Mental Illness) is like for medical professionals. I want to know, too, what the intake process is like for clinicians, and whether they feel as frustrated with the system as we family members do. This book answers these questions, and more.

Through it all, author Lynn Nanos, L.I.C.S.W., shows such concern, knowledge, and caring for people like my son Ben (who is diagnosed with paranoid schizophrenia), that I kept wishing she were on the team treating and caring for Ben right now.

I had to sharpen my pencil several times, I underlined so many facts and observations.

Five Shocking Facts

Five things that either stuck with me or surprised me - and, after nine hospitalizations for my son Ben, I thought I knew it all...

1. Often the "easier-to-manage" psychiatric patients get admitted, instead of those who need the help the most, because they are cheaper and less difficult to manage.  Those admitted include "malingerers" who just want to get off the street for "three hots and a cot" and can fake psychosis.

2. Connecticut (where I live) is one of only three states in the U.S. (along with Maryland and Massachusetts) that do not have laws allowing AOT (Assisted Outpatient Treatment), something that most definitely would benefit my son.

3. Yes, untreated schizophrenia can increase the incidence of violence.  And often, when the voices tell a schizophrenia patient to harm someone, it's someone they know...and usually love.

4. Regarding RLC's (Recovery Learning Communities, often staffed by "peer specialists who endorse the possibility that signs of psychosis are normal"):  " Researchers found no significant benefits...to help the seriously mentally ill population"- of which my son is one. I live in fear of those who would try to "teach" him to get off his meds. And yet the government allows antipsychiatry to infiltrate programs it runs. (Chapter 18)

5. Why do psychotic people not engage in treatment? Nanos lists 17 reasons, and "stigma" was not among them. She argues (backed up by research) that stigma is overrated as a reason to not seek treatment for the seriously mentally ill. She says not one patient has ever mentioned that as a barrier to seeking help.

Lynn Nanos knows her stuff, truly cares about her cases, and fights for what's right - while fearless in exposing the cracks in the system.Highly recommended reading.

Schizophrenia: Back in the Spotlight at Last?

Oprah's latest book selection, a new memoir, and HBO's series with Mark Ruffalo - is schizophrenia finally going to get the attention it deserves?

Of all the SMIs (Serious Mental Illnesses) in the news lately, schizophrenia always seems to get the short shrift; it’s like the last mental illness in the closet. 

Unless, of course, there’s a horrific incident of violence. Then the questions about sanity begin...and often finger-pointing at schizophrenia. And then, advocates like me have to bring out the statistics to defend our loved ones: 

• No, schizophrenics are not “more violent”

• No, schizophrenia does not mean “split personality”

• No, it’s not the fault of “bad parenting”.

Currently, this brain illness is back in vogue with three exciting spotlights:

Will these open eyes at last?

Will these open eyes at last?

1. Oprah’s book club selection is Hidden Valley Road by Robert Kolker - about a family with 12 children - 6 of whom developed schizophrenia

2. HBO has begun airing the mini-series based on the wonderful (and devastating) Wally Lamb Novel, I Know This Much Is True.

3. A new memoir is to be released next month:, He Came In With It, by Mimi Feldman

And still, the myths - and lack of attention to research - continue. As fellow author and advocate Feldman points out in her forthcoming book and a recent guest blog post for Pete Earley, 

A huge question looms:

"Why is bringing those with schizophrenia (and other serious mental illnesses) simply to a state of zombie-like compliance considered a success?"

I have my theories, one of which is this: many don’t see people with schizophrenia as save-able, or - worse -  worth saving. Because the illness often robs them of so much besides reality: their joy, their charm, their ability to empathize.

Still, those of us who love someone with this devastating illness, who knew them before it took hold,  can attest to the fact that they are worth saving. They are locked up inside that shell. We love them, and occasionally we see what could be - if only we could find a CURE, not just a management tool.

Right now, as we all struggle with our own kinds of isolation in this covid-19 surreal life, imagine what it might be like to feel that isolated all the time. In the words of Willy Loman in Death of a Salesman, ATTENTION MUST BE PAID.

Let’s hope these three works of art will propel us toward the changes we need to see - and help bring our loved ones with schizophrenia the respect, love, and CURE that they deserve.

We’d give anything to see their joy again.

Mental Health Awareness Month, for Caregivers too

Will write more about this later , as I am in Buffalo, NY, getting ready to provide keynote to help NAMI Buffalo/Erie county celebrate its 30th year...but wanted to share one of the interviews about the results of a new survey showing that caregivers of those with schizophrenia do better with more support, more resources, and less stigma. Thanks!

WSFA.com: News Weather and Sports for Montgomery, AL.

Schizophrenia and Social Security Benefits

Where to Start?

When we began the process for Ben to qualify for Social Security Disability benefits, I was overwhelmed by confusion, options, paperwork....and had very little idea how to begin, much less proceed. I welcome a guest blogger today, Ram Meyyappan, who has written this about Social Security Disability Help. If you have questions, you can contact him at ram@ssd-help.org 

Thanks!

Here is his article:

Applying for Social Security Disability Benefits with Schizophrenia

The Social Security Administration (SSA) recognizes Schizophrenia as a condition that qualifies for monthly disability payments. In order to be found eligible for either one of the disability programs you must show that despite following prescribed treatments your disease still prevents you from working.

Disability Programs

The SSA administers two different disability programs: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) benefits.Basic eligibility for either program requires:

• you suffer from a debilitating and formally diagnosed medical condition that has been present for at least 12 months, or which is expected to last at least that long, or which is terminal.

AND

• your condition prevents you from maintaining gainful employment in any field for which you would otherwise be qualified.

In order to qualify for SSDI, you must have a strong work history during which you paid FICA taxes. SSI does not take your work history into account. It is a needs-based program for people with limited income and assets. For more specific information on the requirements for SSI and SSDI, visit: http://www.ssa.gov/disability/

Meeting the Disability Listing for Schizophrenia

After meeting the basic eligibility criteria for SSD benefits, your application with the SSA will be reviewed to see if it meets the listing for Schizophrenia in the SSA’s manual of condition that qualify known as the Blue Book. This listing, which appears in section 12.03 of the Blue Book, requires you suffer from one of more the following issues on a consistent or intermittent basis:

• isolationistic behaviors that make you socially and emotionally withdraw

• illogical thinking

• incoherent speech

• inappropriate moods

• hallucinations

• delusions

• catatonia

• overly disorganized behavior

In addition to your application and accompanying medical documentation proving the previously mentioned signs and symptoms, your medical records and other supporting documentation must also show you experience serve limitations, including at least two of the following:

• the ability to participate or complete normal daily activities of living

• the ability to focus on and complete tasks, including normal job duties and tasks in your personal life

• the ability to maintain relationships or otherwise function in social situations

• to persist in life without experiencing lengthy and recurrent “episodes of decompensation”, which are periods during which your symptoms get substantially more prominent and pervasive

 For more information on applying with Schizophrenia, visit: http://www.disability-benefits-help.org/disabling-conditions/schizophrenia-and-social-security-disability

Getting Benefits without Meeting the Listing

Even if you are unable to qualify under either of the listings detailed above, you may still be able to receive disability benefits with Schizophrenia. To do so, you must show through your medical records and other documentation that you qualify for a medical vocational allowance, which simply means that while you do not meet a listed condition, your symptoms of Schizophrenia are still so severe that they prevent you from working.Residual Functional Capacity (RFC) report forms completed by you and by your doctor are the backbone of a medical vocational allowance. RFC reports on mental functioning and physical functioning may be required, dependent upon the symptoms and limitations you experience.

Applying for Benefits and What to Expect

Disability benefit applications can be completed online with the SSA’s website (http://www.ssa.gov/applyfordisability/) or in person at your local SSA office. Either way, it is important that you collect as many of your medical records and other documentation as possible before beginning your application. All of this documentation should be submitted at the same time, or just after, you turn in your completed application forms.

After submitting your application, you should expect to wait at least three months before receiving a decision. Don’t be discouraged if your application is denied. Almost 60% of applications are initially denied, There is an extensive appeals process during which you may still be approved for benefits.

Article by Ram Meyyappan, http://www.disability-benefits-help.org/blog

Social Security Disability Help 

North Shore Schizophrenia Society's Review

Thanks to North Shore Schizophrenia, for their review!

The story of Randye Kaye’s son’s descent into psychosis and the long road to recovery reads like a diary, complete with dialogue, commentary, and an account of her own emotions as each incident and turn of events unfolds. You would think the attention to detail would weigh down the reader, but it has the opposite effect. It carries the reader along.

If you’re someone who has watched a member of your family fall ill, it will also bring you to tears – not tears of sadness but, if there are such things, tears of delight at how she got things so right. There’s a fair chance that in reading BenBehind His Voices, which is told by Kaye in the first person, you will be readingyour own story as well.

Her son Ben, a bright, energetic and creative kid, began to show signs ofdifficulty in his mid-teens, when he first went to high school. He started to withdraw. A previous straight-Astudent, he struggled with academic subjects. He declared to his mother that all the other students wereagainst him. He wouldn't take advice.

When he was just fifteen, he broke down one night in sobs after a big argument with his mother. “What’swrong with me, Mom? Please, please, find me someone to talk to.”We, the reader, know what’s happening, but we only know because we’ve been there. Kaye hadn’t. She didfind him someone to talk to – all kinds of people as the illness progressed. She was highly skilled, able toanalyze, had good connections, also had a good income (she was a major radio show personality), and waswilling to go to any length to help him, but still she was confounded by what was happening. The chaos wasjust beginning.

School teachers and counsellors, leaders at alternate programs, and a long list of psychiatrists failed to puttheir finger on what was wrong. In the meantime, his behaviour became more erratic and bizarre. “Newnormal” was replaced by another “new normal” seemingly without end.

Finally there was a turning point. She got the right diagnosis and Ben’s recovery got underway. As the bookends, he’s (responding to medication), and is still fragile and lacking insight, but he’s getting back on hisfeet. Kaye herself, among many other things, is training Family-to-Family teachers in her home state of Connecticut.

The Refeathered Nest: Not So Empty. Not Just Us!

As we near the end of National Family Caregivers Month, I've been thinking about the less obvious form of caregiving: the fact that so many of our kids return to their old twin (or larger)  beds in the family home, long after we'd imagined we'd have a nest empty enough to turn their old bedrooms into, say, a workout room. Ha.

Sure, my son Ben relies on us more than your neurotypical 30-year-old, because of the different life path affected by schizophrenia.  But my other children, too, rely on us a lot more than I did my own parents when I was in my twenties.  Financial help, washer-dryer privileges, family vacations.  But this seems to be the norm.

Are your kids back at home after college too? Here is why: (thanks to Hannah Peters, and collegeathome.com)Just, sayin' : we are far from alone!

Beyond Hope, to Promise: Treatment Works

For the first time in years, Ben has spoken to me about goals - and he actually has some, that he is willing to share with me.

When you have a goal, it can be risky to say it out loud. What if you fail? What if your dreams don't come true?

Treatment, the Foundation for Progress

For so long, Ben has been busy getting his life back to where it might have been had his progress not been interrupted by psychosis, hospitalizations, and regrouping. Step by small step, he has returned to college part-time, and recently celebrated a full year of part-time employment. But we have not dared ask, "where will this all lead?" or "What are your plans when you get your degree?". We didn't dare. It has been enough, the reality of these first steps. We tend to stay focused on today.

But Ben must be gaining confidence, as he now talks about wanting to "give back to the world" - as a teacher, perhaps, or an author. Will he get there? He just might. But, not all overwhelming goals, I am encouraging him to take one step toward each one and re-assess as the view gets closer.

But none of this would be possible without the treatment he is receiving for his schizophrenia. None of it. Without treatment, he would most likely be homeless, in jail, in a nursing home, or - let's just say it - no longer alive. Now, with treatment (medical, and also emotional and structural),  we have hope, and have taken one more small step:  his life also has promise.

Treatment is too often denied, not funded, not mandated - and that is a shame. Watch this video from the Treatment Advocacy Center about how Treatment Makes a Difference. Because it does. And we must keep fighting for it.

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!

Mental Health Links of Hope and Understanding

There are so many working to increase awareness, reduce stigma,  advocate for proper treatment and services for those with mental illness - and their families. Sharing stories, spreading the word, creating events, producing documentaries, writing letters, speaking to legislators - we are everywhere.

Here are some terrific links I hope you will check out and support - and that they might be of some inspiration to you as well.

Check out this trailer for a documentary-in-progress called Voices. ("A documentary about people who live in the shadows of society") Gary Tsai, a resident psychiatrist in the Bay area, is one of its producers.

Why this film? (still in post-production, not yet released, but there is lots to see on its website)

"Some have been living on the streets for decades, others are now housed, but all are connected by their struggles, and successes, with mental illness. By shining a light on their experiences, we aspire to give them a voice and to humanize their experiences so that they are defined not by their disability or homelessness, but by their unique and compelling stories."

Here is another documentary, which has its first hometown screening tonight in Chapel Hill, NC.

view the trailer here

According to producer KevinCullen, “A Moment of Clarity” is an intimate documentary providing true insight into the world of bipolar disorder told through the life and art of emerging painter Isti Kaldor...Hospitalized during a manic period at UNC Hospital, Isti started to paint. Never having painted prior to his manic break, something in his mind was awoken, the results of which were evident in the dynamic expression of his artwork...(and Isti)has arrived at an unforeseen destination. A place where he can finally do what he dreamed of years ago. Touch peoples lives."

And here is a story of love and friendship:"

Schizophrenia Makes Finding Love Difficult, But Not Impossible"

Another wonderful source of "Links of Hope" come from the readers of Ben Behind His Voices. I am so grateful to you for reaching out to share your stories with me, comment on the book, and continue to spread the messages of understanding and possibility.

One such call led to a chance for me to see a newly-recovered side of Ben's empathy and progress. I blogged about it at healthyplace.com

Together we can truly make this particular change, one story (and, hopefully, solution) at a time.

Thank you for keeping the dialogue going.

Living with Schizophrenia: Your Family is not Alone

Best Mothers' Day gift ever: the Miracle of Ordinary.  Just a simple family dinner for 5, out on the deck, with everyone trying hard to do it all without my help (and me trying hard to stay out of the preparations, not always successfully but close!)  Cute. Sweet. In a MasterCard word: Priceless

Why? So much to be grateful for - happy marriages for both me and my daughter, the end of school finals (i.e. stress) for my son-in-law and son, sunshine, food on the table, etc. - and another Mothers' Day with my son with us instead of in the hospital.

In the past few weeks, I've met many amazing Moms. One of them is Claire, whose daughter Rebecca also lives with schizophrenia, as does my son Ben.  Their story is included in the documentary Living with Schizophrenia (click to view it for free), which is one of Hope and Recovery - when treatment includes the right medications, love of family and community, and healthcare providers who treat the human being, not just the illness,  in a partnership of open communication.

I had the privilege of meeting Rebecca and Claire at the National Council Conference last month in Chicago, along with Dr. Rebecca Roma (also in the film). All of these wonderful women inspire me, and I hope they will inspire you too.

Claire is currently reading Ben Behind His Voices, and says:

Rebecca, Claire, Randye at National Council

I am delighting in your book even more now that I know the author!  Your book is amazing... I like the boxes with information in each chapter...I applaud all your hard work to get this book written.  It really is a great resource .

Thank you! and thanks to all who have shared their stories with me, and the world, so that no one has to feel alone.

Also in the film, also an inspiration, are Josh and his family, Ashley, and Dr. Xavier Amador, the author ofI am Not Sick I Don't Need Help. Read it if you still think you must "convince" your ill relative that they have an illness before anything can be done. It, and this documentary, may change your mind - and help you to be a partner in a loved one's recovery journey.

I am a proud M.R.G. (Mother who Refused to Give up). Because of the support, education and inspiration I've gotten from people like Claire and Rebecca - and the others in this film - the choice to remain beside my son in his journey has been easier, more hopeful, and more successful.

Resilience: Bouncing Back...Bolder

One of the letters in "SEARCH" - the acronym I created and present re what families need when mental illness strikes (or, really, we all need for most challenges) stands for:

Families Have Recovery Process Too

R = Resilience

I wrote about resilience in an article about happiness called Bouncing Back Bolder -because the way we deal with setbacks can strengthen us. We all have them, of course - but sometimes the road when dealing with mental illness seems particularly full of detours and pitfalls.

So when I was asked to be a guest on Angel Tyree's radio show, Bouncing Back to Your Brilliance, I figured it was karma! Angel was a terrific, well-informed and empathetic host. You can hear the half-hour show here.

Here is an excerpt from the article, too:

Confession: I don’t really like lemonade all that much. And, I also think that lemons have their place in this world without being sweetened and liquefied: to balance the strong flavor of swordfish, add tang to a glass of water, keep apples from turning brown.

This much, though, I know is true: if life hands you lemons, and you choose to make lemonade, you have the supply the sugar yourself.

Stop Stigma Now!: It May Save a Life

Last night I had the pleasure of being the keynote speaker for the Kennedy Center Inc Annual meeting. The theme was inspiring:

Create Hope, Celebrate Potential.

The Kennedy Center staff does so much to do just that, from educational programs to support services like job coaching, to residential programs and more, helping families when hopes and dreams have to be adjusted due to a disability diagnosis - in utero, at birth, because of an accident, or (as in our case) as a child develops.

Decorated books! for the centerpieces

We cry our tears; then, if we're lucky and well-guided, we wipe our eyes, pick up the pieces, educate ourselves, find a new community, get some support and new knowledge, and learn to understand our "new normal."  Then we adjust. And accept. And, eventually, appreciate the joys in this "new normal."

None of this happens overnight. It takes time (and the "SEARCH" elements I talk about - support, education, acceptance, resilience, communication, and hope/humor) to get to that new place.

And it takes time and patience.

But none of this - none of it - can happen without first addressing the problem of stigma. Especially where mental illness is concerned - because we can't always bring ourselves to see it, visually or emotionally.

Kenton Robinson of the Eastern Regional Mental Health Board wrote a beautiful, heartfelt piece about his experience with family stigma that almost had tragic results for one of his former 7th grade students:

he says:

Depression, bipolar disorder and schizophrenia are illnesses, just as diabetes or heart disease are illnesses, but they are still viewed by many as the victims' fault. That stigma makes people ashamed and afraid, and it prevents many from getting the treatment they need.

I responded:

Shame was part of our initial reaction until we learned better, through NAMI (I became a family-to-family educator and trainer) and through hearing stories of others. I wrote our book hoping it might save a family as ours was saved - and, possibly, save a life.

Thank you for a wonderful article!

"A Moment of Clarity": Art, Bipolar Disorder, and Courage

I've just learned about a wonderful new documentary called A Moment of Clarity.  I had a long conversation with its producer, Kevin Cullen, and the hope for  this wonderful movie is the same as for Ben Behind His Voices: To reduce stigma, promote understanding, honor the talent and courage of those with mental health issues by focusing on one human story, and share their family's experience as well. Check it out! There is a preview on the homepage, and the movie will be available for screenings to interested audiences. Contact Kevin Cullen for more information.

The story, according to the website, is this:

Isti and His Amazing Art

“A Moment of Clarity” is an intimate documentary providing true insight into the world of bipolar disorder told through the life and art of emerging painter Isti Kaldor.(Pronounced: Ish-tea)

Having aspirations of touching people’s lives by attending medical school and becoming a physician was always his goal. Life however, had other plans. At the age of 19, during his sophomore year of college in Boone, NC, Isti suffered his first manic break and was diagnosed bipolar by the attending psychiatrist at Duke University Hospital.

Continuing to attend school in the midst of making sense of a new reality, he suffered another misfortune. A kayaking accident left him with a broken back. Then, the most devastating loss of all came when his mother, Stefi, lost her battle with lung cancer.

Reeling from his emotional devastation, an unexpected and wonderful thing occurred. Hospitalized during a manic period at UNC Hospital, Isti started to paint. Never having painted prior to his manic break, something in his mind was awoken the results of which were evident in the dynamic expression of his artwork.

11 years and 13 manic episodes later (four of which have occurred during the filming of this documentary), Isti, along with the help of his family, doctors and friends has endured. He has endured by living through what some would consider hell and has arrived at an unforeseen destination. A place where he can finally do what he dreamed of years ago. Touch peoples lives.“

A Moment of Clarity” is his story…

"Shut Up About Your Perfect Kid": Book Review

Gina Gallagher is co-author with her sister Patricia Konjoian of Shut Up About Your Perfect Kid: A Survival Guide for Ordinary Parents of Special Kids.  I first saw this book at NAMI's 2011 National Convention in Chicago, and found it full of useful and realistic information to go with the catchy title.

The authors also write a Shut Up About Your Perfect Kid blog , and I highly recommend that as well.

Since Ben Behind His Voices will be at this year's NAMI Convention in Seattle, I hope to find Shut Up About Your Perfect Kid available there once again, right along with mine.  I could have used this book when Ben was going through frightening changes that shook my parenting confidence to the core.

Here are some things not to say, according to the authors (details in their book and blog):

1) "I don't know how you do it."

2) "Give me your kid for a week and I'll whip him in to shape."

3) "You poor thing."

4) "I'm so lucky, my kids are healthy."

5) "If that were my kid, he'd be different."

As the mother of an "imperfect kid" whose imperfection happens to be gradual-onset schizophrenia which began in his mid-teens, I have been on both sides of the fence; I went from proud Mom (though I like to think I didn't brag) to confused/embarrassed/guilty Mom, and back to proud Mom with a new set of criteria for my pride.  If you need a friendly, realistic and exceptionally empathetic and informative guide to how to maneuver your way through the world of "Perfect Families", I highly recommend this book. Check it out!

Mental Health, Community and Potential:The Clubhouse Model

Last week NAMI-CT's Fairfield Affiliate hosted an informative and inspiring Legislative Social - over 100 in attendance, including about a dozen state legislators, all there to hear about programs and services that help those affected by mental illness live fulfilling, purposeful, hopeful lives. I wrote about it here as well, on my Mental Illness in the Family blog.

My point there, as expressed in my comments at the meeting: don't let the success of these programs and the amazing young adults participating in them lull you into a false sense of security that continued funding is not necessary. It is. Oh, it is. In this climate of budget cuts for the look of the bottom line, never forget that treated mental illness is always way less expensive than the cost - financial and emotional - of untreated mental illness. Keep funding what works!

And here is something that works: the International Clubhouse model. Fountain House in NYC, Laurel House in Stamford CT, Shore Clubhouse in NJ, many others, and here an example from Bridge House in Bridgeport CT. This video was written, produced and voiced by the young adult members at Bridge House.

Possibility, Respect, Understanding. Here is the video. Enjoy.

Defying Mental Illness: a pre-review

So much to be grateful for this Thanksgiving - especially considering how else things might have turned out without knowing some steps to take when Ben had a relapse this summer. Something I've felt before as well as now: We might have lost him.

For over 20 years, we have spent the holiday at my younger brother's house, around the same table with his wife, sons, and others. Ghosts of Thanksgivings past: Ben absent, when he was wandering homeless out West. Ben not there, because he was in the hospital. Ben there physically, but so involved with his inner world that he might as well have been absent.

This year, though, was wonderful. After a very tough summer, Ben has returned home once again in more ways than one. Part of this year's success is due to a very understanding employer who can see past his illness to the value he has underneath. And for that, how can I - and Ben -not be grateful? We are.  The change in Ben, beyond the effects of his medical treatment, has been enormous because of the dignity that comes when you are employed, useful and appreciated.  This is true, I think, for us all.

Meanwhile, I am reading an early copy of a book called Defying Mental Illness: Finding Recovery with Community Resources and Family Supports. So far, I love this book. The authors, Paul Komarek and Andrea Schroer,  say this in their introduction:

The authors know many people who have made it through the struggle with mental illness, andmany family members and professionals who have supported people with difficult conditions.They have come to terms with mental illness, faced every kind of disorder, and dealt with everykind of treatment. They have rebuilt lives, repaired family relationships and achieved meaningfulsuccess.You can accomplish this too.

I'm already hooked! Will keep you posted. Ben, Ali and I tell our story in Ben Behind His Voices.  My first reaction is that we all need a book like this one, too. These authors, I suspect, will provide some concrete information in this book that is "a book that is not too technical, and suitable for communityoutreach work."  Welcome!

Practical Advice: Treatment Advocacy Center

This post is for you if you need some clear, practical advice on how to be prepared for a mental illness emergency. The possibility always lurks in the corner, while we try to keep on eye on gratitude for the good days.  The Treatment Advocacy Center has an excellent page on this topic, with step-by-step instructions for keeping the monsters at bay by knowing we are ready for them.

I will send you there through this blog post by their Communications Director, Doris Fuller, who says:

We who love someone with a severe mental illness probably all have our own personal coping mechanisms for getting through the worry and fear and frustration of living with the impact of treatable but chronic brain disease. The demons retreat, but they never retire. For me, being ready for them is the first defense.

I suggest you read her short, poignant-yet-realistic post first, but if you're impatient here's the link to the Be Prepared for an Emergency page.

Like all preparation, this takes time - but will save you a lot more in the future. Trust me.

Thanks, by the way, to all of you who wrote to express concern about Ben and his "adventure" in a questionable neighborhood. Like Doris in the above blog post, I had my eye out for a stress-triggered return of symptoms, but luckily his reactions to the stress all seem quite conventional. The only "demons" were the ones I could see as well: fear of returning to that neighborhood, reminding us to set our home alarm and change the locks, some reluctance to be alone. I would feel the same way.

Families on the Treatment Team- and book reviews

First two official reviews for Ben Behind His Voices: exciting! Every positive review, from official sources like these and from readers, will help spread the message of respect, empathy, truth and the need for supportive services for those with mental illness and the people who love them.

From Kirkus Reviews and Library Journal:

An illuminating portrait of a parent coping with the guilt and heartbreak that come from feeling like one can’t “fix” one’s child. VERDICT: Recommended for anyone who is involved with teens or those with mental disorders, and a darn good read for memoir fans.-Library Journal

A mother wrestles with the advent of her son’s schizophrenia and its long, painfulunfolding….The author….is eminently helpful, particularly in the matter of self-medication,which so many of the mentally ill prefer to taking the medications that have been prescribed for them….Heartfelt and surely of help to those new to living with mentally illloved ones of their own.-Kirkus review, June 15 2011

Thank you so much for "liking" BBHV's facebook page, following this blog, calling your libraries to ask them to order the book, and especially now for this: your comments of support re Ben's recent relapse, and your agreements in outrage that transitional services are greatly in need of improvement. Ben is currently, thankfully, still safe in the hospital while I scramble to try and figure out what options there are for after his release.  This I know: if proper plans are not made, he'll slip through the cracks again and will re-relapse. There needs to be the "Person-Centered Treatment" he was receiving in his group home - and that's in opposition to the current team's assessment that Ben doesn't need that type of supervision anymore.

NAMI meets in Chicago

The theme of this year's NAMI National Convention was "Together We're Better." Yes, indeed. I learned so much last week, from so many who are advocating for our loved ones, and will do my best to share with you.

Here's one: Treatment Advocacy Center. Their goal? "Eliminating Barriers to the Treatment of Mental Illness." Check them out - they have a great video there as well as tons of resources.  I also met Canadian Susan Inman, who wrote After Her Brain Broke, Helping My Daughter Recover Her Sanity. I recommend her book and articles as well. Now, with Ben hopefully back on the road to medication adherence, it's only because of my insistence - and my official role as conservator - that information is shared with me as to his treatment plan. While I do realize that Ben's recovery is his own journey, I'm not about to let him be totally in charge at this point if I can help it. There is always that balance between stepping in a letting go. In one article called "Help Us Help Our Children" , Inman says,

"This notion of the overly involved mother is especially persistent and pernicious. Common sense tells women that their currently ill children need their assistance, while mental health professionals are too often quick to label their efforts as intrusive and pathological."

Yes, Together we are Better. Families should be included in treatment info and plans whenever possible. Let's work together for "Person-Centered Treatment" that respects the individual but does not close its eyes to the realities of how brain disorders can affect judgment.