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/

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.

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.

Chris Harper Mercer: A Preventable Tragedy?

Another merciless, senseless shooting, this time in Oregon. Another troubled shooter with three names. As details of the life of Chris Harper Mercer emerge on news outlets, I expect, sooner or later, to find out what often is uncovered: undiagnosed and/or untreated mental illness symptoms. Duh. And a family left trying to "handle it" alone. Duh, again. Been there - am there. Except we got some education and support so we could try to help our son. We are among the very lucky families. At the moment.

As mother to a young man who has been diagnosed, and is (reluctantly but consistently) in treatment for a mental illness (schizophrenia), my heart goes out not only to victims and their families, but also to the family of this latest shooter. His father, Ian Mercer, of Tarzana, California, told KTLA on Thursday night: "I am just as shocked as anybody at what happened today".

Once again, the system closed its eyes to the need for support and left a family alone to cope.

Chris Harper Mercer was also, according to a NY Times article, close to his mother, with whom he lived. She reportedly had asked neighbors to help her get her apartment exterminated for roaches that bothered her son, who was "dealing with some mental issues."  How else was she trying to help him? Or, like so many other stigmatized families with a "troubled" relative, did she just hope she could keep the situation quiet and keep things under control?

She obviously could not. Neither could Adam Lanza's mother, Nancy Lanza, in Newtown CT. Once your child is a legal adult, the very few rights you had as a guardian disappear completely. But the problem does not. And tragedy, as we have seen way too many times, can result. Though this kind of violence is NOT the norm for those with mental illness, it is the most publicized result of the neglect of our system toward the 1 in 4 families left to cope with mental illness alone.

When will we ever learn?

When will we pay attention to warning signs?

When will we open our eyes to the need for treatment, and put a system in place to help the families left to "figure it out" themselves?

We are one of those families.  For the past four years, Ben has lived with us, because the system failed to realistically help him stay in treatment and rebuild his life.  The minute he started to succeed, budget cuts took away services he supposedly "no longer needed." That is like stopping chemotherapy halfway through, with no follow-up.

We are Ben's family and we love him. So much so, that we're willing to let him "hate" us during the two most uncomfortable moments of the day: times to take medication that he does not believe he needs. We stay up late to supervise when he gets home from his job, often between 1 and 3 AM.  There are nights when I can barely stay awake, and cannot relax until the meds are safely swallowed and absorbed.

But it's worth it. The stability of consistent treatment has helped Ben to rebuild his life. He has a job, friends, and a car and credit card in his name (!). He is starting to feel like he has a life he's proud of. But he hates those two times a day...and I have no doubt that, were we not there, he would stop treatment immediately.  He has his reasons, one of which is he wants to take full credit for his "better decisions" lately. He does NOT want to hear that his good track record "seems to coincide" with times he takes his medications.

He melts down every so often, accuses us of controlling his life, of mistakenly labeling him "insane" (his word, never mine). He then says he wants to stop taking medication -with the best of intentions to keep succeeding, of course - but we have seen, eight times, what happens when treatment stops. It's not pretty. Hallucinations. Withdrawal. Resistance. Mania. Police. Ambulances. Sometimes handcuffs. Hospitals. Work, school, money, friends - all can be lost so quickly . So we let him hate us, twice a day.

Ben has never been violent - for that we are so grateful. He hates guns, and loves people. So, no, I don't fear he would become a shooter. But I do fear for his life, and his future. If we should stop managing his treatment (someday he might simply refuse, or we might be away, and - let's face it- parents do die eventually...) where would he go? How could he function? Would his "case management team" even have an idea what is going on? Would he get in his car and drive in a distracted state?

Every family dealing with mental illness lives on a tightrope, with an anvil suspended overhead ready to fall - because there IS NO SUPPORT.

We cannot close our eyes to the people who live with mental illness. We cannot sell them guns. We cannot deny them treatment - not just medical treatment, but services and support. We cannot play ostrich and "hope things get magically better."

According to a guest commentary, Treatment Advocacy Center, "The number of psychiatric beds in the US has been reduced in the last 50 years from about 650,000 to about 65,000—about equivalent to the number of mentally ill that wound up on the streets or in prison."

Or living with their frightened, hopeful, families. Attention must be paid.  

Sons with Schizophrenia: A Tale of Three Mothers

Three mothers with so much in common, we could form a club. Each raised one son and one daughter, through adolescence into young adulthood. Each loves her children with all her heart. And, sadly, each of our brilliant, happy, sweet sons began to change in their mid-teens, and were eventually diagnosed with schizophrenia. We have each written about our experiences, shared our stories so they might help others.

But our stories have taken three very different turns. Today, one of these mothers mourns the death of her son, who passed away in “individual housing” earlier this year. Another of us sits stoically in a courtroom as her son is being tried for shooting moviegoers in Aurora, Colorado. And I, the lucky one, get to hug my son as he heads off to work, in his car, filled with gas that he paid for himself. For today, yes, I am the lucky one.

Love matters…but it’s not enough

My heart goes out to the other mothers, even though I have never met them. I only know them through their writings, but I feel their struggles, their pain, their guilt, their love. Anyone who lives with mental illness in their family knows that we live life with crossed fingers, and we fight with all our might to make the right decisions.

And it is far from easy.

Laura Pogliano called herself “lucky”, too, sharing her story The Fortunate Mother: Caring for a Son with Schizophrenia in USA Today in 2014. In it, she “feels lucky that she's been able to hang in, lucky that Zac is not living in jail or under a bridge…even though ‘Twice a year, right in front of me, he disappears into psychosis, and there is very little left of who he is. Then medicine resurrects him for a few months, I have much of my child back, then he dies again.' “ 

Later, she struggled with whether or not to let Zac get his own apartment.  In a USA Today follow-up story, Laura says Zac had moved into an apartment near her home, and that she had tried to “protect her son without being overprotective.” Zac stopped communicating with her for a few days, and she had the same reaction as many parents who strive to allow independence with limits: “I asked myself, 'How much do I baby him? If he's with some friends, I don't want to butt in.' ''

Who hasn’t been there? I know I have. That balance between letting go and stepping in is a staple of parenting. In Laura’s case, the results were tragic: Zac was found dead in his apartment in January 2015. Her “luck” had run out…but the lack of respect and services for her family situation is certainly more to blame than luck.

Laura is devoting much of her time now to honoring Zac’s life with her advocacy. This did not have to happen. See her powerful piece called My Mentally Ill Son versus Your Son With Another Type of Illness.

Young Holmes Family

Holmes Family Today

Arlene Holmes is the mother of a man who is hated by many. Her son, “Jim” is known to us for only one thing : the day he opened fire in a crowded movie theater in Aurora, Colorado, killing 12 and wounding 70. James Eagan Holmes, before that day, was a neuroscience student, a camp counselor, a church goer, a class leader, a big brother. He was – and is – somebody’s son. And he had needed help for a long time.I don’t profess to understand how Arlene Holmes feels. I can only imagine the guilt, regret, isolation and grief – and surmise that these feelings began long before the “Batman incident”, when her son first began to show early behavior changes (including a suicide attempt at age 11). What I imagine to be the feelings behind the stoic expression of Arlene and her husband as they sit near their son during his trial comes from her self-published book of poetry When the Focus Shifts, her reaction to the shootings, and the arrest and trial of her son. She states that the proceeds are to be donated to medical and mental health services.

Is she a “monster”, who “raised a monster”? I doubt it. I suspect that she, like me and Laura, was just a woefully underprepared and unsupported parent.

She writes:

(01-08-2013) I can never forgive myself for not knowing that this would happen.

How could I have known?...

Forgive yourself…And then forgive the people who hate your guts and want you dead.

(02-01-2013) I had a good kid who never harmed anyone.

That changed; his brain changed.

(03-22-2013)

A memory of when he was in high school…we are hiking up a hill

I can’t keep up.

Jim stays behind to make sure I am okay.

Isn’t that empathy?

Arlene writes about sitting in Jim’s untouched childhood room, “because I need the memories and tangible evidence that he was a good person.” Could this have been me? Could it have been Laura?  Three mothers – three sons with schizophrenia.

What made the difference?

Is it love? I highly doubt it. These boys were all loved.

Is it the lack of family education and support? Shortage of attention paid to early diagnosis and treatment? Is it the fear of diagnosis, fed by stigma, fear, and paucity of realistic access to treatment that must be consistent to be effective? Answer: sadly, all of the above.

Or is it also just the randomness of things, the moments we missed when we look back and say, “I wish I had known?” To this I say: you can never know. You can guess. You can educate yourself. You can take whatever actions seem right, do what the mental health system “allows” you to do. But nothing is ever that clear where mental illness is concerned.

“Show me a prison, show me a jail
Show me a prisoner, man, whose face is growin' pale
And I'll show you a young man with many reasons why
And there but for fortune, may go you or I”
- Phil Ochs

Is it fortune? Really? According to a 2006 study, “An estimated 56 percent of state prisoners, 45 percent of federal prisoners, and 64 percent of jail inmates have a mental health problem.” So can we also blame a mental health system that is underfunded, shortsighted, and mired in legalities that prevent people with mental illness – and their concerned families - from getting the help they need?

I’m talking with George, a social worker who works in the prison system, about this. He says that, yes, many of his prison clients have schizophrenia. We agree that so many of those with unmanaged mental illness wind up instead either homeless or in prison, and that they’d have been better served by receiving treatment, as early and consistently as possible – but then George shocks me with his next statement. He says:

Of course, the majority of my guys are imprisoned for killing their parents.

This stops me in my tracks, knocks me right off my soapbox. There but for fortune…?I have often imagined how hard it would be if Ben were incarcerated (which almost happened), institutionalized (which also almost happened), or homeless (which did happen, in the past) – but the thought that he could kill us, or anyone, in the midst of psychosis has never crossed my mind. Ben is a gentle and sweet soul – has been since birth – and I’ve always felt that this has been our saving grace. But did Arlene Holmes think her son incapable of violence? Did Laura Pogliano think she was through the worst of it when Zac admitted he had schizophrenia and agreed to be interviewed by USA Today?

The truth is, I have no idea what Ben’s voices tell him when he is untreated . He has never admitted to even hearing voices, much less the words he hears, but if he stops taking medication the fact that he responds to this internal world is undeniably clear. We only hear and see Ben’s side of the “conversation” – he gestures, grimaces, talks – but what do the voices say to him? I hope we never know, We’ve made it our job to make sure he stays in treatment, keeping that internal world quiet enough so Ben can work, live and love in the external world. We have no “legal” right to do this, of course; it’s simply a house rule, and Ben follows it. We have set limits in our home and we enforce them. So far, so good.

These days, Ben has a job he excels at, a social life with friends and family, and interests like hiking, bowling, and college classes. He takes his medication twice daily, which we supervise. Not my favorite moments in the day, but worth it. Every day he asks for a “Mom hug”, and tells me he loves me. Lucky family. We know it. But we live life with crossed fingers. All we can do is our best to make sure we respect his illness enough to keep it managed.  And the rest…is out of our hands.

There but for fortune….and one hell of a continuous fight. For treatment, for research, for respect for the needs of those with mental illness, the right to have treatment and the right to a future.

Three mothers.

Three stories.

Three outcomes.

Countless other families that could have been saved – including those of who have lost loved ones – with early diagnosis, stigma-free treatment, understanding, better research, mental health support services.

When will we ever learn?

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.

Encouraging Treatment: Loving Parent? or Cruel Dictator?

(repurposed from my final blogpost on "Mental Illness in the Family" on HealthyPlace.com)

Two things happened last month that stirred me to revisit an often-examined question:

Am I too involved in my son’s life? Have I “stolen his manhood and his rights” by insisting on treatment?

One reminder came in the form of a reader’s book review on Amazon.com forBen Behind His Voices, calling it a “Testament to Abuse of Power and Parental Authority,” the only one-star review in a sea of 5-star praise and gratitude. Clearly, a man with an agenda, so I didn’t take it too personally, but this is not the first time I’ve been called an over-involved parent. On the other hand, I’ve also been criticized by others  for not “stopping” Ben from dropping out of high school, for “allowing” my son a period of homelessness in Idaho and “letting him fail” when he gained and then lost five different jobs after he returned.

And then there is — the question of “forcing” Ben to take medications to help restore balance to his brain. The second reminder came from a voice student of mine, who shared how well his son with schizophrenia was doing without meds, having “learned to recognize the voices and deal with them” instead. Of course, that’s wonderful. Some people, I understand, can do that — but often it takes all of their energy just to keep those voices at bay. And then there are those, like Be, who cannot, in a million years, manage the full-time job of keeping his inner thoughts (or voices, or whatever they are) quiet enough so that he can attend to the outside world. Elyn Saks clearly outlines her unsuccessful attempts to get off meds in her memoir The Center Cannot Hold; in our family, we have seen, all too frighteningly, what Ben’s life becomes when he doesn’t take his medication — wildly wandering, constantly mumbling, lost in his own world, relentlessly pacing, capable of lashing out. He is lost to us then and, I believe, to himself.

In the Name of Love. (mask created by Young Adult with Schizophrenia)

But with the treatment we “insist upon?” He is working at a job he loves, is finally having a social life with some friends who enjoy his company, is studying at college part-time, and enjoys riding his bicycle, taking walks, and even cooking. He lives with us now — which is the parenting contract lasting a lot longer than we’d ever planned. But he has a life. He tells us how happy he is. But he does not ever credit the medication for his success. He needs to feel he is “totally responsible” — which he is, of course. His ambition, personality, charm, intelligence are what has helped him to succeed. But without the treatment, his illness clouds those wonderful qualities. Treatment has allowed him to shine through. Ben, no longer “behind” his voices all the time.

We applaud his independence, and hope he has a car and home of his own someday.  We’d like our lives back, too, believe me. But not at the expense of Ben’s life. And right now, being part of the family is something he loves. He had his own apartment once, a recipe for disaster though we’d had high hopes.

So, dictator Mom makes sure he takes his meds and does his chores. We also provide rides to and from work when we can — which is most of the time (one of the reasons I often work from home). If we can’t, we trust him to figure it out.  We are parenting the way many parent adolescents: let the rope out, carefully, a step at a time.

Some, including the reader reviewer above, advocate for “patient’s rights” to refuse treatment. We advocate for Ben’s right to have a life, to rebuild his future. He is happy, adores his job, participates in activities with family and friends -  and it can all fall apart if he stops treatment. We have seen that happen at least ten times in the past, and are happy to be called “dictators” if it means that Ben will be in the world, able to have a life.

It's his right.

What's the Difference When Your Child's Illness is in the Brain? "Sympathy"

60 minutes recently did a segment on the plight of families dealing with mental illness.  They interviewed many families and healthcare professionals in Connecticut, on how our system fails our Mentally Ill Youth in Crisis.

Deeds: “The system failed my son”

Virginia State Senator Creigh Deeds speaks out about how he was attacked by his son Gus, who suffered with schizophrenia. Virginia state senator Creigh Deeds suffered multiple stab wounds, and his 24-year-old son Gus died from an apparent self-inflicted gunshot in what police are considering an attempted murder-suicide.

Read more: Virginia State Senator Creigh Deeds' Son Evaluated and Released Before Stabbing | TIME.comhttp://nation.time.com/2013/11/19/before-senators-stabbing-a-shortage-of-psychiatric-beds/#ixzz2rzmupJD6

Connecticut families, in the continued aftermath of the Newtown shootings, still face the same issues of lack of beds, a revolving-door mental health system, and lack of support and help.

How I wish they had interviewed me, too - but the stories of Deeds and the other families are heartbreakingly similar. Sadly, the story in my book is not unique. Many suffer the same issues we do, every day, without support or even understanding.

In the "overtime" segment about stigma, a group of families shares the effect of stigma on their experience, and how a broken leg can bring casseroles, while a mental illness can bring warning letters from the lawyers of your neighbors.

What's the difference, according to one of the parents interviewed? "Sympathy."

Watch the clip here: http://www.cbsnews.com/videos/nowhere-to-go-mentally-ill-youth-in-crisis

Loving through mental illness: "It's like he disappears..."

Sometimes we say things, and they stick.  Ever have someone repeat back to you something you said which touched them, even changed them, and you had no idea you'd said it? That's how interviews are sometimes.

Two years after Ben Behind His Voices was published, I still get the chance to spread the message of our story, and for that I am grateful. I feel like the book's journey has just begun, and though I plan an updated version sometime in the next year to include the latest developments, many tell me that the story is timeless to them, as it reflects where their family is right now in the mental illness journey - or where they hope to be. Others simply like its message of resilience, strength, and hope - regardless of the cause of the challenge.

Tomorrow night I look forward to a book-reading and Q/A at Plainville Public Library in CT.

Here is Lisa Capobianco's story about it in the Plainville Observer, including the quotes I'd forgotten I'd said - to which I added my own italics...

Author to share story of coping with son’s mental illness

November 8, 2013

By LISA CAPOBIANCO
STAFF WRITER
When national voice talent and actress Randye Kaye noticed her 15-year-old son Ben experiencing mood swings, frustration, and isolation, she thought he was going through a phase as a teenager. But as Ben transitioned into early adulthood, his symptoms worsened, and little did Kaye know that he was exhibiting symptoms of gradual on-set schizophrenia.“
This was beyond what I expected,” said Kaye, a former host of a morning radio talk show in Connecticut. “I did not know anything about it—I really had to learn and explore.”Schizophrenia affects 2.4 million American adults age 18 and older, according to the National Alliance on Mental Illness. NAMI reports that schizophrenia, marked by changes in brain chemistry and structure, may inhibit an individual’s ability to think clearly, to make decisions, and to manage emotions. Individuals with schizophrenia may also exhibit hallucinations as well as delusions, and may have a difficult time performing complex memory tasks.
For Ben, he began experiencing delusions at age 17 when he decided to drop out of high school without a realistic plan, and started smoking marijuana. Struggling to find help for Ben as doctors misdiagnosed her son’s illness, several years passed before finding the right medication. Ben was diagnosed with schizophrenia at the age of 20.
“I learned to have empathy for my son and how I could help him", said Kaye, who also serves as a teacher and advocate of NAMI. “When you lose a child to mental illness, it is like he disappears.”

From the time, Ben developed symptoms of gradual onset schizophrenia to the time he received treatment, Kaye said she struggled to support her family as a single parent with several jobs. When she quit her job as a radio station host, Kaye had time to reflect on her family’s experience, and decided to write an account of Ben’s battle with schizophrenia in her own book called, “Behind Ben’s Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope.” In her novel, Kaye said she provides a better understanding of mental illness and the people who struggle with it.Kaye will share her story with residents at Plainville Public Library, 56 East Main St., on Tuesday, Nov. 12, at 7 p.m., reading passages and answering questions. Through her story, Kaye said she hopes readers will gain a greater understanding of mental illness, and how to gain acceptance, resilience, and strength.Kaye also said she hopes not only to spread awareness, but also to break the silence among other families who may be struggling with a mental illness so they may become a sense of comfort for each other.“We need to understand that we are not alone—there is hope,” Kaye said.Kaye said her son, now 31 years of age, has developed stability in his life. Although he continues to take medication, Ben now takes college courses and holds a part-time job while starting a social life.“Parenting comes with adjusting your hopes and dreams,” Kaye said. “If your child develops a mental illness, you have to switch gears and still see what is good.”Kaye’s book will be available for purchase during the event, and is also available online at www.benbehindhisvoices.com.

Radio Interview: "We All Got Issues" Show

What's going on now? Why doesn't Ben "accept" his illness? What tips help families like ours to cope? Latest interview aired today,  September 23, 2013:

What is life like with a family member who has schizophrenia?  During this episode of the "We All Got Issues" show - schizophrenia is the ISSUE.  Dr. Glenda interviews Randye Kaye, the mother of a son with schizophrenia.  Randye is also the author of "Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope".

Here is the show - starting with the song "The Climb" setting the tone.  Dr. Glenda Clare is an empathetic, knowledgeable interviewer. 

New Caregiving Internet Radio with WeAllGotIssues on BlogTalkRadio

"Hearing Voices" Movement...Not For All

As the mother of a beautiful young man who struggles with schizophrenia every day of his life, I am always tempted by magical thinking.  What if Ben's symptoms could be brought under his control without medication? What is he could somehow manage the hallucinations himself, if he only "understood" their origin?

Our Brain -How Much in Our Control?

Oh, how I wish.

There is a growing movement of those who are doing just that, they say.  I have met a few of them, heard their theories, congratulate them on their success, and wish them every happiness.

My son, however, would be harmed by this  "hearing voices" movement - or, in the US, something called Mad In America. I'm glad it has worked for some - but it is not for everyone.

Susan Inman talks about this in Huffington Post,  Canada:

Many perfectly healthy people have auditory hallucinations. However, auditory hallucinations can also often be part of the chaos of a psychotic illness. In recent years, numerous groups have developed to assist "voice hearers," as some wish to be called. Unfortunately, most of these groups don't want to recognize the very different needs of people with severe mental illnesses.

Frequently, hearing voices groups encourage people to reject any diagnosis of mental illness, or "psychiatric labels," they may have been given. They encourage participants to listen closely to their voices to investigate their meanings and origins. Encouraging people to focus on their voices when they may be having a hard time differentiating between what's real and what's not real can be very poor advice.

Susan is the author of After Her Brain Broke: Helping My Daughter Recover Her Sanity. She is a Mom/advocate like me, with many academic achievements to her credit as well.

My comment to her post follows. A slightly shorter version appeared in HuffPost.

What do you think?

We are all "a little bit mad", if you count a mere touch of some of the symptoms that affect the life of my beautiful son, who has lived with severe schizophrenia for over 15 years.

Sure, we all live with some unwanted thoughts, with superstitions and rituals that comfort us somehow, with moods and desires that vary for many reasons. But most of function. We work, we love, we keep commitments, we plan for our futures. We know the difference between thinking, or wondering, about jumping off a bridge and actually doing it. We have a "thermostat of reality" which seems to save us from disaster.

My son Ben, however, without his medication, has no such thermostat. Trust me. Time and again, when his meds levels drop, he loses jobs, friends, purpose and - most sadly - any sense of joy.

Surely medication alone does not a recovery make. We, all of us, need some level of structure, purpose, and community to thrive. This varies with the individual, as does the level of need for medication.

The "hearing voices" concepts may be a helpful element of recovery once a level of stability is reached, but to assume that the movement is for everyone - much as we wish it were true, believe me - is not only shortsighted but downright dangerous.

Ask any family who has lost a loved one to schizophrenia's voices. Ask any family whose loved one has been a victim of someone who listened too hard to the voices, and could not stop. Ask the folks who attended a Batman premiere in Aurora, Colorado.

We need research. We need better treatment options. We need the right to find what works for each person who lives with serious mental illness.

Thank you, Susan.
Randye Kaye - author, Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope

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!

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

Ben Behind His Voices: One Year Into a Book's Life

Hard to believe that the book launch party for Ben Behind His Voices was over a year ago now. The "new book smell" is gone. How are we doing?

Perhaps writing a book is like being pregnant: you're changing your life, making plans, working hard - yet have no real idea of what is coming into your life. Publication is like giving birth, perhaps - ah, here it is!, maybe the hard part is over.

Tend the Garden of Success Each Day

If that is true, then launching your book out in to the world is like raising a child. You have to work at it, every day - and, even so, there's much that is not truly in your control. You do your best, you try things from every angle, and then you hope that child will grow well, and touch the lives it/he/she is meant to touch.  Keeping book interest high is a garden authors must tend every day - and, like a garden, the seasons are ever-changing.

So - here we are, one year in - and the biggest discovery for me, I think, is that people are still discovering the book.  Unlike a flavor-of-the-month flashy new novel, the memoir seems to be more of a turtle than a hare - and that's just fine with me.

Sure, no Oprah appearance yet. Was booked onto Dr. Drew, but bumped by Hurricane Isaac updates. Ah, show biz.... Still working toward that "magical National appearance", perhaps - but there has quite a lot of press on the local, state, and Public Broadcast level. And, the book is young, and so far very well-received, both by reviewers and by readers who reach out to me.  So I don't think the chance is gone. At least, I hope not.

My publisher, who has had to move on to the new releases, seems to have noticed that book sales are growing instead of fading, as I got a note from my editor: "It’s great the book is still garnering interest.  Usually things really trail off after the first year."

Not if I can help it! Not when I'm still receiving letters from readers like this one:

Your book has been so very helpful to me. I am not done reading it yet, but so far this book mirrors my son's symptoms that I have been explaining away.

Thank you for sharing your experiences with me. Without ever knowing you, I feel very connected to you and your son. Thank you for helping me along my journey.

So, when my editor adds, "Great job!  I wish all my authors were as into it and on top of it as you.  I wish they would get the message that this stuff can help drive sales and recognition." - what does she mean?

Sure, book readings at Barnes and Noble are done - that's so last year. But there's a lot that still works. Mostly it's about finding new reasons to share the story - and there are so many things to fight for, to increase awareness of, in the world of mental health. So the work now is in topics, in the platform:

Keynote at Univ. Mount Union

• Increase respect

• Shift perspective from stigma to stability

• encourage therapeutic alliance for recovery

• see potential and strength

• care for the caregiver

• educate families so they can be allies,

• advocate for services from housing to supported employment and education,

• hear the many voices of people living with mental illness - and their families....

...and on. Hence the speaking topics I offer, and the gratitude for the places I've been invited to deliver them.

The book may be a year old, but the topic is timeless. Where to open the conversations? Everywhere.  This week it was a keynote called "From Stigma to Stability - Changing Minds about Mental Illness"  at a local Rotary Club. This weekend it's a presentation at the US Psych Congress in San Diego,. then a keynote atNAMI NYS conference.  Also getting involved in advocacy with the ICCD (Clubhouses for mentally ill members) to talk about how helping someone with mental illness helps the family too...Hospitals, Universities, Medical Schools, Nursing Programs...and then there is twitter, facebook, my blogs here and at HealthyPlace.com...

Remember - one in four families deals with mental illness in a loved one. That's a lot of folks who need to hear they are not alone.

Year two, here we go! and thanks for your support so far.  I hope you'll continue to share, tell others about this memoir and the work it is inspiring. There's so much still to be done.

And if you happen to know Oprah, well.....that'd be awesome too.

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.

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.

Becoming a Best Seller: The Real Reward

Okay, so not quite a best-seller yet...unless you count being pretty consistently in the top ten in Amazon's Best Seller list in the category ofHealth/Mental Health/Schizophrenia.

Still, the news from my literary agent (Claire Gerus, who is amazing) today, about a year into the book's published life, is a surprise: She actually has a royalty check for us!  This, from the woman who jokingly said to me not long ago (at least I think it was jokingly): "Royalties? What are those?".

So. This means the book is actually making a profit for Rowman and Littlefield (after reimbursement for  their publication expenses), and hence for me and Claire as well.  While this check is hardly large, to be honest, it is a delightful surprise in its symbolism: people are buying, and reading, Ben Behind His Voices.

It also means that more and more opportunities are opening up for me to speak to audiences in person, to meet and collaborate with readers and potential readers - families, providers, doctors, nurses, faith leaders, legislators, media, PAMIS (people affected by mental illness.

Someday!

And at least it's a start. Someday, I still hope to see the book on the USA Today or New York Times Best Seller List (hey, it can have universal appeal, right? Library Journal called it "A darn good read for memoir fans"...), for now the fact that it is getting into the hands that I suspect need it most is the best reward.

I got a Facebook message yesterday from a woman whose son had suddenly experienced a psychotic break - out of the blue.  She said, Someone sent me your book, and I sat and read it during the 5 hour wait in the hospital emergency room while waiting for a bed to be available for my son. Thank you for sharing your journey. We are struggling, but your book has helped me.

Now,  that means everything to me. That is why I wrote the book; that is the real reward. The fact that someone I have never met was helped by our story, and then passed it on to another "stranger"  who might need to feel less alone and have an idea of what to do next...well, it helps me feel that the messages in our story are getting a life of their own, like a child going out into the world.

So, if you know someone who needs "Ben", please share. You are the messenger. Thank you. With your help, the book will get into the hands of those who will benefit from its story and tips - and maybe, just maybe, get it to the bigger "Best Seller" lists. For then, I will know that the increased "Sales" means that more people will have been touched, enlightened, and perhaps helped by its messages.

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!

Touching Lives : Grateful for the Chance

Mental Health and Disability Issues Affect Us All

Keynote: Educate. Collabeate. Advocate

Last month, I had the opportunity to speak about to the wonderful folks at PPAL, the Parent/Profession Advocacy League ("The Massachusetts Family Voice for Children's Mental Health") at their annual conference.  Our family story wasn't the only one presented; there were also two adults who had, as children, survived trauma and illness and abuse to come out stronger and smarter. Their stories inspired me, and I was challenges to honor their experiences by connecting our family's journey to theirs.

Courage is everywhere.

Support is essential. Sometimes the one right word, at the right time, can change a life.

My hope, always,  when I speak about our family's "chaos to hope" with Ben's schizophrenia (and also in writing the book)  is that some of our words will be those "right words" for someone else who may be listening to or reading them.

So happy, therefore, to have heard the following feedback from the fine folks at PPAL:

"96.3% of those who completed an evaluation stated they were, "very satisfied" with your information, preparation and understandability. In addition to the ratings, I thought you might like to read some of the written comments attendant to your presentation and I have listed them below.

o "excellent presentation"
o "she was very inspiring and incredible...have her come back again"
o "loved how she shared the journey of her son...realistic, well done"
o "empowering"
o "I loved her sense of humor"
o "outstanding speaker and presenter"
o "Very well spoken. I'm really happy to have heard her speak."
o "empowering/full of empathy"
o "awesome speaker" o "Very informative and inspirational."

Once again, please accept the sincere thanks from all of us at PPAL."

Thank you!! There is no speaking without a listener. My thanks for the opportunity to connect with all of you at PPAL and see the awesome work you do.

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.