The Extra Innings Movie - and Podcast

A few years ago, I had the honor of speaking at an event  to increase mental illness and suicide awareness, and to built support for an independent film called "Extra Innings." -described this way on  imdb: "Set against the enchanting backdrop of 1960's Brooklyn, Extra Innings tell the story of a young man who is caught between pursuing his dream (baseball) and staying devoted to his Syrian Jewish family that is afflicted with mental illness."

I have stayed in touch with the creator of the film, and last night was honored to be a guest on his podcast.  We talked about schizophrenia, family, stigma, support, and so much more.

Listen to the Full Episode: talkradio.nyc/shows/extra-innings
You can see or hear the podcast here: 
or here.

Meanwhile, about the movie:

It did get produced and released - and was winning awards all over the place and set to go to movie theatres...and then Covid hit. We all know all about that.  But - the good news is that you can now see it on Amazon Prime. Don't miss it!

As for the podcast, here's what Albert had to say:

“The love is pure, but the rest is difficult. I wrote it for families to not feel so alone.” Randye Kaye on what motivated her to write her book chronicling the journey of the development of her son’s mental illness.

Check out this exclusive clip of Extra Innings: Covering All the Bases! This week’s guest was actress and author, Randye Kaye.

Randye Kaye makes her living as an actress. In 2011, she published her memoir Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope, based on her own experience understanding and living with her oldest child’s schizophrenia. She hosts two podcasts: The Life Talk Show and Schizphrenia: Three Moms in the Trenches.

Find More about Randye Kaye
Website: randyekaye.com

Albert Dabah is a certified life coach and therapist who began his career as a social worker. He founded his video production company, Simba Productions, in 1979, and recently directed and wrote his first feature film, Extra Innings, which is based on his own life.

Life Coaching: adabahcoaching.com

#ExtraInningsMovie is available to stream on Amazon Prime, and on demand at Google Play, Fandango, Apple TV, Vudu, and DVD through our website at extrainningsmovie.com
Watch the trailer! bgpics.com/movies/extra-innings/
Watch Extra Innings: bgpics.com/movies/extra-innings/

Schizophrenia and the Family: Exhausted, Broke, Helpless and Blamed

It isn't easy, loving someone with schizophrenia.

Well, let me rephrase: Loving is easy. Loving is in our soul.

Liking? Sometimes much harder.

Caring for? Protecting? Supporting? Very very hard.

Families Hanging by a Thread

Families who have not abandoned their loved ones with schizophrenia (and many, unsupported and at the ends of their ropes, feel they have no other choice) are left holding so many loose ends it's easy to feel hopelessly tangled up all the time. And that's on a good day. On a bad day? We live in fear.

We fear - for our loved one's life, sometimes for our own lives. And it often feels like there is nowhere to turn.

As for us - well, as of this writing, we're still one of the lucky families. After eight hospitalizations, after seven years in a group home, after homelessness and arrests, our son Ben is back home with us and stable on medication. Well, for today at least. We take it a day at a time, and each day we get that passes without major crisis feels like a gift - a gift that could get ripped away at any time.

I often speak to groups about the Four Pillars of Recovery Success that have enabled Ben to rebuild his life after his periods of psychiatric care: Treatment, Purpose, Structure and Love. Yep: he has a job right now, and a free place to live (with us), and a social life.  Yay. I know what a miracle that is. But, as I've written before, that success is precarious. If one of those pillars should crack, we could be back at Ground Zero in the blink of an eye.

Still one of my most popular posts, here and on HealthyPlace.com , is this one:

Schizophrenia and Parenting: Step In or Let Go?

Though six years have passed since I wrote it, it still gets comments. And in those comments I am reminded of the deep, mournful, and sometimes terrifying challenges families - and parents specifically -  face when schizophrenia moves in.

Here at our home, we face a relapse within 36 hours if Ben refuses to take his meds. I am prepared at any moment to call the police, kick him out, make him homeless, take his car keys away - and possibly face unpredictable consequences if we have to do that - for no family can know what the voices might tell their relative to do. That is our reality. And so we make sure, every single friggin' night, that he takes his medication and doesn't spit it back out. I hate this. It is hard on our freedom, on our work life, on our marriage.

And yet - we love him. So we do it. Because, even though Ben looks at us like we are the enemy during "meds time" - we know that with treatment he has been able to hold down a job, drive a car, play with his baby niece, help a friend.  And that without it - handcuffs, ambulance, hospital, and worse. We've seen it way too many times.

Other families are not so lucky. And tomorrow, we might not be either.

Every day, we face the possibility that Ben might refuse his meds, and the actions we must take if he doesn't.

But wait, there's more.

• There is literally no place for him to go if we have to remove him from our home. Some work success (precarious tho it is) meant that he lost his Social Security support and some medical coverage.

• What if his car is repossessed? It is leased ( he did this without our knowledge) - so guess who helps with payments when he can't do it? (Like when he recently lost his job due to a restaurant closure and can only find work 2 days a week).

• What if he gets sick? What if we lose coverage for his meds?

• What if something happens to us?

Yes, we know we are lucky right now. Ben's schizophrenia is a severe case, and we are lucky he responds both to the medications, and to our house rules that he must take them. I know many families who would love to have such "problems" - as their loved ones are either homeless, in jail, in danger...or no longer here.

Laura Pogliano and Zac

My friend, Laura Pogliano, was a "Fortunate Mother" too, as noted in USA Today. Her son Zac, took his meds, called schizophrenia a "rip-off" but was rebuilding his life too. Like my Ben, Zac wanted independence as the next step - and Laura helped him get to that goal . Like us, her family walked that fine line between stepping in and letting go. But. in his own apartment, Zac passed away in his sleep, possibly due to the heart problems caused by his medications. She mourns him still - and devotes her life to the rest of her family - and to advocacy  with Parents For Care.

But so many - too many - families are living in a world of real fear. Note some of these most recent comments in the HealthyPlace post mentioned earlier:

Now (my son) is out (of the hospital) and has made it clear he still sees me as a dangerous person. I’m terrified that if this delusion is part of his “narrative” that he isn’t able to separate from, that I’ve lost my son and won’t be able to get him back. Our relationship had become remarkable strong since he grew into adulthood and counted him not only as my son but as a friend who I enjoyed spending time with. Now suddenly in a matter of weeks our relationship is shipwrecked and I am, in his eyes, some dark mastermind with a network of spies.

Its an impossible situation and I’m heartbroken at the thought of us becoming estranged over this - Dubya, Feb 2017

I am at a complete loss. I am watching my 20 year old son suffer in jail in a very psychotic state. I feel like he is going to die waiting for a state hospital bed. I am in unbearable pain for him. - Carrie, Feb 2017

My daughter’s violent behavior at times is so disturbing. Like so many others she won’t stay on her meds which causes everyday to be unpredictable. Caseworkes always find her extremely difficult to deal which makes it hard to get any help... Living with her is to the point where i feel I can’t take it anymore… - Carol, 2017

I just finished Googling “how to deal with an older brother with schizophrenia”… I read something about cutting ties eventually for the sake of my own mental health. I also read about putting him in 24/7 care group homes but what if he doesn’t want that? I don’t know what to do. Do I even have an older brother? Does that make sense? When am I speaking to my brother? When am I speaking to the schizophrenia. - Someone from Minnesota, Feb 2017

I’m afraid to be alone in the house with him. He sees a psychiatrist and a therapist once a week, has a therapist come to the house, takes meds (tenuously), but nothing has helped. He’s still aggressive, abusive, isolated, paranoid, delusional, and irrational. He’s threatened us verbally and brandished a knife on several occasions. I love him so much and I’m incredibly sad for him. He talks about suicide almost daily. He is just suffering, always fearful, always sad and miserable. -  Antionette, Feb. 2017

Sadly, these are but a handful of comments - from last month alone. All over the nation, families are left to deal with mental illness alone. Where can they turn? What can we do? what can they do?

This situation demands attention from legislators, researchers, and the judicial system. Families living with mental illness need help - this cannot be swept under the rug. 

The Precarious Jenga Tower of Life with Mental Illness

My son's life is a never-ending game of Jenga, carefully constructed by us all and always in danger of toppling - as pieces are removed by too many players jugging too many variables and way too little foresight and funding.

This month has been challenging. Five years after Ben Behind His Voices was released, we are living inside a constructed existence composed almost entirely of Jenga blocks. Ben has climbed his way to full-time employment as a restaurant server, and has even earned kudos on Yelp.

Recently one of his friends, a young man struggling with mental illness issues and also transgender transition, was reported missing (he has since been found, thank goodness) and his family was frantic. She drove to our home to ask for Ben's help, any info he might share. In the course of our conversation, she revealed that her son had been prescribed medications for his anxiety and depression but had recently refused to take them - and soon after that disappeared. She told Ben that he was an "absolute inspiration" to her son because he takes his meds -  and has held a job he loves for over two years.

What she hadn't realized is this:

Sure, Ben takes his meds - but he still doesn't think he needs them. He is "compliant" because it's a house rule we enforce - by staying up til the wee hours of the morning (Ben helps close the restaurant 5 days a week) to supervise. Could he refuse? Sure. But we would then refuse to allow him to live with us.

I pray we never have to force this issue. We've done it before - it is risky and painful to all - and so Ben knows we mean what we say. But the whole "compliance" situation is a jenga block that always sticks out, just waiting to be pulled from the stack. It's right here on the foundation level. If that one goes, the whole thing topples over.

But even with that foundation intact, each day there are other pieces that hold his life precariously together. This week, four were pulled out --- and we hold our breath, as do so many families in similar circumstances, that the structure can still stand.

• One - Ben lost his Social Security Disability benefits (SSDI) this week. I know - he is working now, and so shouldn't "need" the funding, but he does. Even though he works, he still has a disability. Every day he lives with the threat of hospitalization, and the job loss that would almost certainly follow. His schizophrenia is currently being "managed", yes, but it's still very much there in the decisions he makes when not focused by his work shift. The large payments on his impulsively-leased new car, insurance premiums he now owes to hold onto Medicare, the costs of food and rent...Social Security was helping with those. But it has been pulled from the stack.

• Two - Ben has been supported by a care team - which now (because of funding cuts) has to discharge him from their client roster. He is "doing so well" that they want him transferred to private practice. Help! This rips the safety net right out from under us. Sure, he is doing well now - but what if.....?  It's terrifying to think we'll have nowhere to turn if Ben makes a wrong turn. Right now, the care team has it easy, as we generally handle medication supervision, transportation, doctor appointments, conservator duties, legal help etc. - but the safety net of a care team has been essential to help us when the mental health system (and the paperwork) gets overwhelming or confusing - which is ALL THE TIME.  I don't have the Social Work Masters degree to understand how the benefits work, and what we need to do when emergencies strike. NAMI Family-to-Family taught me a lot, but we can't know it all.

• Three - The restaurant where Ben has been employed for 2 1/2 years has just suddenly closed its doors! This place was not only his income, but also his source of pride, family, and a feeling of normalcy. I worry that the stress will be too much, not to mention the loss of income. What about his car? His life? What about OUR life, and our bank account? We can't afford the losses that keep coming. Ben had paid us rent, but that's gone now with the loss of SSDI. We cover his medicare premiums, his food....and yet we know how many families would be thrilled to have these "problems" -  a family member with schizophrenia who actually takes his meds (albeit reluctantly), has a job to lose, friends to help?

• Four - He had, after a decade on these medications, a white blood cell count that might force a change in meds. Please, no. Nothing else works, trust us. He has tried them all.

But still.

So that's four sticks pulled from the tower.  More threats always loom for families affected by mental illness.

What if......:

• He can't find another job?

• Medical insurance suddenly refuses to cover the only meds that help him?

• He loses his car?

• He gets anxious and upset by the changes and decides to disappear?

• His symptoms act up due to the stress and his potential employers see it? His friends see it? He has been dropped socially many times before after one "weirdness" display.

Help Prevent This, Please!

The one in four families living with mental illness deal daily with their own Jenga towers. We are never "out of the woods." We work every day to shore up that tower and help our loved ones have a life. We and our loved ones needs support, education, funding, research, and a chance to continue to improve. Please keep that coming. We can't handle the short shrift anymore, even if it looks like we can. Bravery often has fear underneath it. Mental illness deserves respect, funding, and a good - and constant - dose of the reality of how important prevention is.

NAMI Palm Beach Keynote - Support, Education, Acceptance

Keynote Speech for Annual Luncheon NAMI Palm Beach County, FL - a wonderful affiliate doing so much. This event raised thousands of dollars. Congrats!

The full version of this keynote is available on YouTube. Here, however, are just a few highlights:

Schizophrenia and the Family: In a Nutshell?

It occurs to me that some new readers of this blog may not really know the backstory that brought us here.

I've just returned from Warsaw, where I was honored to have the chance to speak to a global audience about our family experience with schizophrenia and recovery in my son Ben - and to have shared the stage (well, one at a time...) with the wonderful Pete Earley, author of Crazy: A Father's Search Through America's Mental Health Madness.

Pete told his story, and I told mine. The challenge was that, while I usually speak for at least a half hour, I had 17 minutes to sum up the last 15 years of chaos, discovery, and hope.  Not easy! But it did encourage participants to pick up the book for the whole story.So, for newbies to this site, here is a "nutshell" version of our path so far. I wrote this to send to NAMI, for possible media interest.

So - the "movie trailer" version of where we've been:

Fortunately, my son Ben (diagnosed with schizophrenia)  is currently doing well - but it has been a long road, and we almost lost him several times - so far. Every time that services are cut, or his needs misinterpreted, we run that risk again. Like many families, we have taken on much of his care ourselves - to make sure things continue to go as smoothly as possible.

 Our story? In a nutshell: 

• Bright, promising childhood - Ben was (is) bright, personable, loving

• Mid-teens: changes begin, become more frightening with the years - isolation, high school dropout, paranoia, a period of homelessness in Idaho

• Finally: diagnosis at age 20 - and I had discovered NAMI, which enabled me to (at last) be an educated partner in Ben's treatment and recovery...when "allowed" to by the system

• A long, dangerous wait for Ben to be "ill enough" to get admitted to a hospital - as if wandering through streets, near-incarceration, and strange visions were not enough

• Five hospitalizations in one year - 2003 -as we awaited the right meds, and then "permission" to be involved in his recovery

• At last - we "declared him homeless" so he could receive some services. Eight years in a group home - recovery progressed, but two relapses as staff ignored family information about Ben's med compliance

• Then, by 2011, improvement included part-time college success, a part-time job...and then a resulting cut in services as Ben was "doing so well".  Sent to his own apartment with extremely reduced support services. Result? Relapse, including police at his door, near loss of his job (thankfully they saw past the stigma), and 7 more weeks of hospitalization as he refused treatment - and was allowed to.

• Partnership finally resulted in stabilization - and Ben now lives with us. He is back to part-time work and college success, and is now enjoying a social life. But without the medication, he relapses within 2 days. We supervise carefully, twice a day.

Message? Recovery IS possible - with four cornerstones of:

• Medical Treatment

• Purpose

• Structure

• Community/Love

The cost of cutting services, and of cutting out the family support system, is: disaster. Families are helpful - IF they receive education and support. NAMI rocks - especially

Family-to-Family

!

NAMI: How Strong Can an Affiliate Be?

The answer: Very Strong.

NAMI can make a tremendous difference, on levels from personal to political, and ranging from local to national.  I have felt it as a Family-to-Family participant, teacher and trainer; I have, I hope, nurtured it as a NAMI National Convention Presenter, and as a writer.

And, as a speaker and broadcaster, I've had the honor and privilege to see NAMI in action, in so many ways.  As a family member, I know that NAMI helped me to:

• learn about and accept my son's illness

• know that I was not alone, and

• find ways to turn our grief into advocacy and action.

Nowadays, NAMI serves and can represent those who are living with mental illness as well. Some call those affected by mental illness "consumers", others say "clients", or "patients", or "individuals"...and the debate on the right term may go on.  However, the need for respect, individual treatment, understanding and hope remains the much more important issue than finding the right word.

Keynote on Mental Illness: From Chaos to Hope

Last week, I got to know NAMI Summit County, Ohio, when I served as the keynote speaker for their 27th Annual Anniversary Celebration Dinner/Auction, themed "From Chaos to Hope." So close to the subtitle of Ben Behind his Voices...it had to be fate.

When I get the chance to speak to groups of those who care about mental illness issues as much as I do, I always feel that I learn more than I teach; once again, in Summit County, this proved to be the case.

The audience was filled not only with those affected by mental illness in themselves or a loved one, but also with Crisis Intervention Team (CIT) trainer officers, judges, lawyers, healthcare and social work professionals , politicians, and other friends. I learned about the courage, resilience, and actions of so many, by listening to the recipients of the evening's Awards: Journey of Hope, Community Recognition, Lifetime Achievement, Heroes Make a Difference.

I met people who had lost a loved one to mental illness and turned their grief into advocacy; I met those living with mental illness who now mentor others in the same situation; I met the leaders of this affiliate, including of course Mel and Helen Reedy, who have spearheaded so many wonderful programs that show what NAMI can do when there is a vision, and it's properly supported.

NAMI Educational and Support Programs, and Beyond

NAMI Summit County, in addition to providing the Educational and Advocacy services we often associate with a NAMI Affiliate (support groups, speaker series, Family-to-Family, Basics,  and other educational programs), offers assistance to those who are striving to cope with a brain disorder. These programs include:

Housewarming

Housewarming provides new, basic household items to assist persons who can now live independently. Since the program’s inception, over 1,000 requests were filled (207 in 2011, alone), aiding in the transition to leading and independent life.

Needy Soles

Needy Soles footwear provides shoes, socks and other footwear to those who cannot afford to buy their own. 664 pairs of shoes were provided in 2011 via vouchers provided through our local Community Support Services organization.

Hair Care Program

Limited income can mean sacrificing basic personal care. A trip to the barber shop or salon promotes self-confidence while providing a basic need. Clients may obtain a voucher redeemable at the Akron Barber College. 608 haircuts were provided in 2011.

Creative Kids

A scholarship program offering the opportunity for kids in Summit County with Mental Health issues to participate in extracurricular activities such as art, drama, martial arts, music and more. 

Recovery in mental illness is a community process, and I am grateful to NAMI Summit County for showing me yet another example of what can be done when someone has a vision, and many work together to make it come true. That, indeed, is the path from Chaos to Hope. No one does it alone.

Thank you!

Lost chapter: NAMI Family-to-Family, Experiment

Between the first draft of Ben Behind His Voices and the final one that went to publication, a few chapters (well, about 100 pages) were on the literary equivalent of  film's "cutting room floor."    

Here is one of the "lost" segments, from a NAMI Family-to-Family class I was teaching at the time.

May of 2004

I’m teaching my fourth Family-to-Family series, and this group decides to try something different. They vote to invite the “ill relatives” we’ve been talking about for nine weeks to attend the class on Recovery and Rehabilitation, where a guest consumer speaks.  They want their relatives to hear the stories. This is unusual, but this class wants to do it; so tonight we are joined by about five of the people we’ve only heard about since February. Ben is one of them. It feels odd, their presence in the room – one of the most effective things about F2F is that, for once, the family members get to be open about themselves, honest about their own sorrows, frustrations, and hopes.  This is the one place where they don’t have to be conscious of how their words will sound to the person whose illness has caused all those emotions.

I, too, feel self-conscious with Ben in the room. Does he disagree with what I’m saying?  Will he rebel against the idea that I hope for a “recovery” from an illness he doesn’t yet accept?Will this help him, or set him back?

I watch our guests during the class. Most are young adults, but not all.  They listen to our speakers, ask some questions.  They offer some insights, and also some resistance. We are, in reality, not expecting to “convince” them, but we’re still hoping something may sink in sooner or later.  I know I am. You never know.

The best part of the evening comes, unexpectedly, during the break. While all the family members are inside the room, talking with the guest speakers around the snack table, our relatives have taken their snacks into the hall and are talking to each other.  They’re in a circle, and they are talking.  I don’t know what they say to each other, but I do know that my heart lifts at the sight.

They are not alone; they are not so different.  They need more of that comradeship. They need each other.  There are so few support groups for teens and young adults with mental illness, unless they’re in the hospital.  Perhaps, like all young adults, what they need most of all is a healthy peer group that can make them feel like a part of something, and can inspire them to take one more step in the right direction.

I plant seeds. I plant seeds of insight and I hope someday they will grow.

Call Me Crazy: You Are Not Alone in this Fight

Cast of Call Me Crazy

Lifetime is premiering a new film this Saturday at 8 PM:  

Call Me Crazy - and I can't wait to see it. I hope you will watch it too. 

Here is the description from Lifetime:

Through the five shorts named after each title character -- Lucy, Eddie, Allison, Grace and Maggie – powerful relationships built on hope and triumph raise a new understanding of what happens when a loved one struggles with mental illness. "Call Me Crazy: A Five Film" stars Academy Award® and Golden Globe® winners Jennifer Hudson, Melissa Leo and Octavia Spencer, Sarah Hyland, Sofia Vassilieva, Brittany Snow, Ernie Hudson, Jason Ritter, three-time Emmy Award®-winner Jean Smart, Lea Thompson, Oscar®-nominee Melanie Griffith and Chelsea Handler. Laura Dern, Bryce Dallas Howard, Bonnie Hunt, Ashley Judd and Sharon Maguire direct the anthology

NAMI (National Alliance of Mental Illness) is a partner in this broadcast. They have a launched a new stigma-busting initiative as part of the campaign, encouraging us all to share our stories as part of You Are Not Alone in  This Fight.

As I myself prepare to visit Ohio, New York, Louisiana, Michigan, Connecticut and Tennessee in the next few weeks to share our story for Mental Health Awareness Month, I am thrilled that the messages will reach way beyond personal travels and speeches to reach the wide viewing public. 

Here is the story I shared on the NAMI site:

My son has experienced what I later learned is a fairly typical gradual-onset  pattern toward full-blown, and heartbreaking, schizophrenia. After years of chaos, we have gone through the stages of family emotional acceptance (NAMI Family-to-Family saved us, which is why I now teach and train others to teach it) and have hope once again - but that hope is always guarded, affected by stigma, caution and some sense of loss.

One saving grace comes in realizing we are not alone. Speaking out about family experience brings mental illness into the light, where it belongs. My book Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope was created in part to open eyes, ears and hearts to the family experience - and get schizophrenia out of the closet so we can work on paths toward mental and emotional recovery.

Bravo to Lifetime - I hope this movie can help us take another step away from stigma and toward empathy, acceptance and solutions.

Randye Kaye

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.

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

Diagnosis at last: Grief and Relief

It's Mental Health Awareness Day, and HealthyPlace.com (host of my Mental Illness In the Family Blog, and lots of great info, encouraged me to do a video post for the "blog party" -

So here it is - one minute about the "moment of truth" when a diagnosis is finally shared. So many emotions.

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!

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!"

A Good Day: Ben Comes Back

Ben is on the phone in the other room right now, talking to his friends and explaining that he hasn't been able to call because  "I didn't take my meds and so I was in the hospital for six weeks." Hey! That's way more open than he was with the psychiatrist this afternoon. Very interesting. But - he sounds alive. Happy. And I can breathe once again, while my to-do list grows with ideas to try and prevent this last relapse from happening again.

But today - we celebrate. Sure, "what-ifs" can always crowd out the joy, but short of the actions we can take today, and plan for later, there is nothing left but the choice to be grateful. That's where we are right now, and boy does it feel good. I have never regretted letting happiness win, not once. Whatever else happens - or could happen - we are, and will be, able to handle it somehow. (That's one of my favorite "momentary mantras"...I have seven of them that will form the heart of my next book, Happier Made Simple)

And there's more! This is a really cool day.

the first copies! Photographer: Ben himself

1. A package arrived from Rowman and Littlefield: my six "author copies" of my book! And - amazingly - the first one to see these copies was Ben. He's the one who took the picture you see here.

2. Author appearances are building. The latest: a collaboration with the wonderful, devoted, brilliant folks over at Laurel House in Stamford, CT. Watch for more details, but it looks like the book launch party will also be an awareness raiser for the issues we all care about (and solutions, such as the ones exhibited at Laurel House). Save the evening of September 22nd and e-mail me if you want an invite!

3. Thrilled to announce a new partner for Ben Behind His Voices, this time for the audiobook version. I start work next week on the narration for Spoken Word Inc., and it will be available in both CD and downloadable versions. So excited! - This company is dedicated, passionate, thoroughly professional, and as excited about the book as I am. Watch for more on this, but you can always go to facebook and "like" their page at SpokenWordInc, and/or the Ben Behind His Voices, audiobook page.

audiobook version of "ben"

4. Ben's employer - the best ever - is welcoming him back to work after this six-week absence. Before this episode, they had no idea Ben has schizophrenia. Now they know. And they are still giving him back his job - with a willingness to adjust his hours to whatever the Doctor suggests. Now that's another miracle. Ben starts back to work tomorrow.

And, while you're on facebook, the published version of "Ben" has both a group and a page. Thanks!

Yes, a very good day. My family feels complete again. I'll take every day of that I can get. And now - to figure out the next best steps. Ben's stay with us is only a "visit" so we can get the transitional pieces into place.

NAMI National Convention:Where We Need to Be

Chicago. Ben is still in the hospital back in Connecticut, and I am here - at the NAMI National Convention.  This isn't the first time I've had to make this decision. Six years ago, in 2005, I left Ben to go to St. Louis for another NAMI function, so I could become a state trainer for the Family-to-Family program. Then, as now, I don't regret my decision. Ben is in good hands (City Hospital staff is wonderful, and Ben is responding - knock wood - to his meds at last) and his sister and brother-in-law are nearby to visit and, well, just to be there.

And, as one speaker reminded us yesterday, Ben has to take care of himself too. I can supply the support, the framework, put the pieces into place - and will continue to do so - but this is Ben's journey too. And, for now, my best decision is to take care of myself. So, husband Geoff and I hit the road on Wednesday and drove 14 hours to be here.

The right decision. Here, I am surrounded by a couple of thousand of people diagnosed with mental illness (including Jessie Close of BringChange2 Mind),  families of those diagnosed (including newsman Bill Kurtis and journalist Pete Earley, author of Crazy: A Father's Journey Through America's Mental Health Madness) and friends both personal and professional. This is where we all need to be right now - talking about everything from proposed budget cuts for Medicaid (talk about crazy!) to the need for Assisted Outpatient Treatment (the lack of it in Connecticut - one of the only six states without it - is the reason Ben has had his relapse).

We all need to be here. We all need to share, advocate, learn - and, yes, laugh. So much has been done, so much needs to be done. I'll share more when we get home. Right now there's a workshop on Supported Housing and I'm on my way.

Mental Illness Recovery: Four Cornerstones

Ben's recent setback (and, fingers crossed, re-recovery) has cemented, in my mind, the "Four Cornerstones of Recovery"  in Mental Health.  Here I share them in in a short video for HealthyPlace.com's YouTube Channel.

Attention must be paid to the human being, while making sure the physical balance is maintained by supervising medications.

And for the family? This reminder: education helps. Here, a link to an article about Family-to-Family, and its documented effectiveness:

Support Program Can Help Caregivers Cope with Relative’s Mental Illness

Families and Mental Illness: Listen, please.

one constructive thing...

I woke up early this morning, grateful to have slept at all. It's finally Monday, and the main players on Ben's so-called recovery team are back at work. Maybe - just maybe - I can do something today that will help Ben, repair some small part of the damage that has been done by the recent, blinders-on, money-saving (ha!) way his recent transfer from group living was handled.

The sleepless night came by surprise. After a Fathers' Day filled with blessed distraction, I found myself with physical exhaustion but a wide-awake brain when my head finally hit the pillow. The body knows. Sleep would not come. Too many thoughts.

Today I awake in the family room, where Ben usually sleeps when he spends the night with us. The pillow and blanket are the ones he uses, and they smell of him even though he hasn't stayed with us much since moving into his new apartment. This scent, I think, is what finally lulled me into the three hours of sleep that came at last.

Ben's laundry is clean and neatly folded in the corner of the room. That, at least, was something I could do for him yesterday when the treatment world was asleep. In these three days since his relapse I've revisited the earlier stages of emotional recovery for families (introduced in Class 1 of NAMI's Family-to-Family class), as we all do when crisis suddenly rears its ugly head. Crisis, hoping-against-hope, shock, fear, guilt, sadness, anger - and now I must return to acceptance and advocacy in order to make the calls, have the meetings, figure out a way to fix this if I can. Look out. I'm about to pick up the phone.

Most helpful during last night's insomnia? I reread the latest issue of the NAMI Advocate, reread the insightful comments on this blog and my companion blog for healthyplace.com, and then wrote an entry on the latter, reviewing the four cornerstones for mental illness recovery as I see them: Medical Treatment, Community, Purpose and Structure. Ben had all that (not perfect, but still present) a month ago; now all four have been shaken to the core by the sloppy, extreme and trigger-happy transition that shook his familiar world.

Writing these posts has a calming effect, as though by taking the ideas out of my head and piecing them together on paper or screen frees me from their hold.

It suddenly comes to me that Ben does exactly the same thing when he writes - in one of his many spiral notebooks, on scraps of paper, on his hand. Maybe, for a moment, it gets the voices out of his head and into another place where he can begin to make sense of them, have some control over them. 

We are not so different, after all.

Thanks for reading this blog, and helping me feel like our story might somehow be of help.

Family Matters in Mental Illness and Recovery: Sharing

Since this is a new home for the blog I'd previously shared as "No Casseroles for Schizophrenia" on blogspot, Technorati has asked for my verification, so here it is: 295NHGGCAUTX

Meanwhile, thanks again to you: for following, sharing, and caring.  I hope to continue the dialogue for all of us - one in four families - affected by a major mental illness in one of our own: child, spouse, sibling or parent.

Other excellent forums exist as well, such as:

• healthyplace.com (where I also blog about Mental Illness in the Family)

• NAMI

• NAMI Family-to-Family (its effectiveness documented here in this Psychiatric Services article)

• NAMI groups on twitter, facebook, linkedin

• BringChange2Mind

and many more.

I'll try to keep you posted right here, and hope you'll do the same. As always, please feel free to follow, subscribe, comment, tweet- and tell others that we're here, and they are not alone.

If you are going to the NAMI National Conference, stop by and see me on Friday July 8  (Poster Presentation around noon) to say hi - and  for a free bookmark with book info and alsohelpful tips on family matters!  

Catherine Zeta-Jones, Charlie Sheen and kicking the shame out of mental illness

According to CNN, "Catherine Zeta-Jones, has checked herself into a mental health facility.
The actress, who has been by Douglas’ side since he was diagnosed with throat cancer last fall, is seeking treatment for bipolar II disorder, her rep confirms to CNN."

There is an excellent link to an article on bipolar disorder here - and brava for Ms. Zeta-Jones for not only getting help, but for choosing not to keep it a secret.  This takes courage, class - and, I believe, a desire to help others by example.

 As for Charlie Sheen - well, no one can diagnose from afar, but I sure would bet a cup of coffee on the fact that he, too, has bipolar disorder.  Just saying.  And, with acceptance and continued treatment, he could be back on Two and a Half  Men by the fall.  However - the road to acceptance is no short journey. 
Some never make it.  Just read Dr. Xavier Amador's book, I Am Not Sick I Don't Need Help, to hear more about why.  He talks about schizophrenia, which is a thought disorder; bipolar is a mood disorder, and that makes for many differences.  With my son Ben's schizophrenia, there is no moment when his eyes shine with his full personality the way they used to before his illness developed; With bipolar disorder, there is often a precarious period during which the highs seemed tempered by the lows. As I sometimes say to the members of a NAMI Family-to-Family class when I teach about the different illnesses, "at least with bipolar you get to be charming part of the time."  It gets a laugh - a painful laugh. But still.  Hence, Charlie Sheen's wonderful timing in comic performances - and his outlandish hubris on his live tour.

However, there are similarities as well in thought vs. mood disorders. Psychosis is psychosis, and it's hard to diagnose a speeding train.

Britney Spears - remember the shaved head? Recall how her father finally took control and became legal co-conservator? See how well she seems to be doing now? That is so wonderful to see; still, in interviews promoting her latest CD, I see no reference to what really seems like a bout with bipolar disorder.  Is it her family's right to keep this all private? Absolutely. But I can't help but imagine how many young people would be helped if Britney were to talk openly about her struggles, and if she was helped by treatment: medication, family involvement, therapy. So many college students suffer from depression and - more importantly - do not seek help because of shame.

Let's get shame in mental illness out of the closet and kick its butt. Being open about treatment is a great step towards that acceptance.  Wishing Catherine Zeta-Jones and her family lots of love, and the same empathy and applause her husband Michael Douglas got when he publicly dealt with cancer.