The story of Randye Kaye’s son’s descent into psychosis and the long road to recovery reads like a diary, complete with dialogue, commentary, and an account of her own emotions as each incident and turn of events unfolds. You would think the attention to detail [...]]]> Thanks to North Shore Schizophrenia, for their review!

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

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

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

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

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

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

Our Brain -How [...]]]> 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 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, [...]]]> 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:

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!

[...]]]> 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.

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 — [...]]]>

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

I think he says [...]]]> At the end of the movie Silver Linings Playbook, when main character Pat Peoples is about to embark on the next, happier, more stable part of his life, I think he says something to his ex-wife about doing much better because he is focused, determined, physically fit - and (shhh!)taking his meds.

I think he says this because it’s muttered almost under his breath – like it’s a big secret we don’t need the audience to know. As if he could do it all by himself without those nasty “drugs”.

Really? Most of the one-out-of-four families who deal with mental illness will say that, while all those other elements of recovery are also essential (love, purpose, helping others, exercise, structure) , they could be entirely useless without the medications that stabilize the brain. Albeit not perfectly.

Does Pat Peoples Take Meds in Silver Linings Playbook ?

One quote from the book:

“…a woman who knows all my secrets, a woman who knows just how messed up my mind is, how many pills I’m on, and yet she allows me to hold her anyway”,

suggests that Pat did, after initial resistance (which we see in the film), take his medications (which we might see in the film, but it’s left unclear).

How nice it would be if people like my son Ben, diagnosed with schizophrenia, could see a movie hero who learns to accept that his meds do help, openly swallow them in the movie, and acknowledge that they have been part of his recovery.

Thank You, Pharma Companies and Reps

In the past year, I’ve had the honor several times of addressing pharmaceutical reps to tell them how much their work matters. These reps have, well, a bum rap. The face stigma of their own, portrayed as money-hungry, aggressive, pill-pushers. I speak to them in my keynote as author and Mom, tell our story, and remind them that that without new developments in medication – which it is their job to make available – my son might not be where he is in life.

One comment from a recent attendee:

“Your story inspired our entire sales force to continue working hard to ‘bring value to life’ for patients and caregivers alike.  I can’t begin to tell you how moved other members of the company from other sales divisions were to hear your story—it really helped put a face on schizophrenia and the many challenges and hurdles faced by all concerned.”

So – if you research, develop, work for access, make available, or otherwise help to bring new meds to people like my son – thank you. Keep at it, because many of these meds could certainly be improved. But you give our family hope.

Even if my son still feels he needs to hide the fact that medication is part of his recovery. Even if he wants to think all the success is due to his own willpower and drive.

Recovery Needs Many Things – Internal and External

I am a big fan of drive, exercise, community, purpose, and a positive attitude. But, where mental illness is concerned, those qualities are usually not enough – not without meds, especially in people as young as my son.

Maybe, someday, there will be a popular movie that, loud and proud, gives medical treatment some credit too.

(Still – I loved the movie.)

Weeks after the tragedy in Newtown, though facts are still to be confirmed about Adam Lanza’s history, we struggle to understand how it might have been prevented – or, at least, how to help prevent it from happening again.

First, some facts: Court-ordered hospitalization for mental illness is authorized in [...]]]>

The nation weeps

Weeks after the tragedy in Newtown, though facts are still to be confirmed about Adam Lanza’s history, we struggle to understand how it might have been prevented – or, at least, how to help prevent it from happening again.

First, some facts: Court-ordered hospitalization for mental illness is authorized in every state, but each state’s criteria for involuntary treatment is different. Connecticut’s report card? Not so great.

“Connecticut’s civil commitment laws are among the most restrictive in the nation when it comes to getting help for a loved one in psychiatric crisis,” said Kristina Ragosta, senior legislative and policy counsel for the Treatment Advocacy Center, who serves as the organization’s expert on Connecticut. Ragosta said the law is restrictive in three ways that differentiate it from states with stronger laws.

1. An individual needs to be dangerous before intervention is possible. The standard requires that the individual be a danger to self or others or a danger due to grave disability before commitment is possible.

2. The law provides no option for qualifying individuals to receive court-ordered treatment in the community. This makes Connecticut one of only six states that does not provide the option of assisted outpatient treatment (AOT) as a condition of living in the community.

3. The state’s standard does not take into consideration an individual’s past psychiatric history, such as repeated hospitalizations, and/or symptoms of psychiatric deterioration that could culminate in violence or other consequences of non-treatment.”

Here is my letter to the state’s bipartisan task force

Dear Committee:

I am the mother of a beautiful son who suffers from schizophrenia. “Ben” is now 30 years old, and with treatment is both a student (Dean’s List) and taxpayer (employed in season at a Connecticut tourist attraction, where he interacts beautifully and appropriately with the public).

Without treatment, or when services are cut, he is a patient instead- wandering aimlessly through the halls of a psychiatric hospital until he agrees to go back on his meds. This has happened three times since Ben began his recovery phase – and each time we face the fact that he may never return to us, as there is no mandated treatment, no assisted outpatient treatment, and we his family are left holding the bag and guessing how to help him.

We have struggled to get our adult loved one help and been thwarted by the restrictive mental health treatment laws in Connecticut.

We were fortunate to get educated and supported by NAMI-CT, but other families are not so informed, and

treatment works...when you can get it

eventually feel they have no choice but to give up – and their loved ones wind up homeless, in jail, in a nursing home, or – worst – threatening others and/or acting upon delusions that are very real to them, and may include violence.

While I understand that it is unclear what led to the events in Newtown, it is clear that our civil commitment

laws are in need of reform.  Nancy Lanza, I will venture to guess, was left with no help, no legal right to mandate help for her son – and ended up guessing how to bind with him. In her case, she must have chosen the only thing she knew from her own childhood: target practice.

Mental Health treatment could have made all the difference.

Too many families, like ours, are left feeling helpless and unsupported. Eventually, our family was able to make educated guesses about how to help our son, because of NAMI, memoirs, and other sources of information. But not all families know how to find this info, and even we sometimes guess wrong. Trust me, no family should have to do it alone. We wind up broke, scared, frustrated, and grieving for the loss of hopes, dreams, and someone we love.

Mental health services make all the difference, and these are woefully underfunded, confusing to find, and difficult to maneuver.  The cost of not providing these services, as we saw in Newtown, is so much higher than funding them, both emotionally and yes, bottom line, financially.

The last time my son had a relapse, the government wound up paying for a seven-week hospital stay instead of part-time residential staffing that would have helped him stay stable.

You add it up.

Let’s vote for our futures, and for the one in four families left dealing with mental illness all alone, and for the possibilities that can exist for those who receive treatment (assisted as needed) and support services.

We need a Kendra’s law in Connecticut. It might have helped us so many times – and it might have helped those in Newtown.

You can read more about our story in my book, Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope. or I will be happy to come and tell you in person.

Thank you.

[...]]]> Here is the latest radio conversation about mental health, family support, the tragic (and possibly preventable) Newtown shootings, and more. So many issues.

at a recent NAMI conference, I spoke about the truth [...]]]> Letters, we get letters….and each time it reinforces the fact that mental illness affects the whole family – and that many - too many – families are left to guess at proper treatment and cope alone, especially if their family member is a “legal adult.”

at a recent NAMI conference, I spoke about the truth that underneath every “patient” is a valued person: (this link goes to a short youtube excerpt)

The Courage and Love of Families Dealing with Mental Illness

from a couple in Massachusetts:

I just finished reading your book and I say thank you. Our family has been on this journey for 12 years with our daughter. My wife and I read your story, cried, wiped tears and started again, shared in your triumphs and your challenges, laughed, recalled frantic moments, and on. We are members of NAMI, the F2F course many years ago saved us from bottoming out. We still fight every day for society to support this brain illness. I will hold onto your visions of Pride, Hope, and eternal love for your family. Thank you for speaking out and sharing your family with us.

from Laura in California:

First I would like to thank you for writing this awesome book. I have bought a few copies and am having extended family read it to help understand what our family is going thru. I am writing you because our son who is now almost 24 is diagnosed with schizophrenia…the real problem is at this age we want him to live independently from us. I am worried if anything were to happen to us he would be lost…Thank you so much again for writing this very important book.

from another Mom:

My husband and I both read your book Ben Behind his voices in four days we couldn’t put it down you were telling my story with my son.
I have both my sons mentally ill.
I have so many question I want to do what you did and help them get their lives back.
My older son unfortunately became violent I called the police one time … he spent 4 months in jail/ Psychiatry, then he became homeless because he wouldn’t go by the house rules and seeing a psychiatrist – let alone taking meds.
Both my sons had a breakdown in their sophomore year in college.
I would like to get my son off the street and get him help.
Please help. I am also a member of NAMI.
Thank you for the book you are a wonderful mother.

 

As you can see, the story in Ben Behind His Voices is not unique. Families are to often left to cope alone, and I am thrilled that we are, at least, beginning to reach out to each other. I’m honored our book is a part of that, but without you, wonderful reader, the story will only go so far. Thank you for commenting, connecting, sharing, recommending. I can’t help but think that, even though the “newtown shooter” has not yet been proven to have had a mental illness, the situation would have very very different if his family had had education and support.