Schizophrenia and the Family: In a Nutshell?

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

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

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

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

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

 Our story? In a nutshell: 

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

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

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

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

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

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

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

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

Message? Recovery IS possible - with four cornerstones of:

• Medical Treatment

• Purpose

• Structure

• Community/Love

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

Family-to-Family

!

Update: Two More Years into Schizophrenia Journey

snow…like the symptoms that can coat Ben’s thoughts

Yesterday I was alone with Ben all day.  Huge snowstorm, hubby away in California, daughter and her husband in their own apartment, driveway covered with a foot of snow.  Ten years ago this would have been a recipe for all sorts of disaster: frustration, loneliness, trepidation. Instead, thanks to treatment which includes medication as well as the other cornerstones of recovery (community, purpose, structure), I was actually glad to have Ben's company.  Here is what happened:

• Ben helped me shovel the driveway - I mean really helped, as in he did 75% of the work.

• Ben cooked us a delicious homemade pizza for dinner.

• We watched an animated movie - well, parts of it - during the required "watchful time" after he takes his meds.

Any parent of someone with schizophrenia will tell you that this is a day to be grateful for - and I am, believe me. No, life isn't perfect, and I still wish for the magic wand (or, more to the point, better research and treatment options), but still I know a good day when we see one.

I'm also thrilled that the book still reaches people, two+ years after publication. Although there have been a few changes in our situation since then (two more relapses, a disastrous foray into "independent living" for Ben resulting in our current living situation where he is at home with us, -with a roommate to boot-, and both a part-time job and more college credits earned), the story of our "journey from chaos to hope" remains relevant- at least according to the readers who have written to me. I am so grateful for the feedback, and the chance to share that continues with each reader (or listener to the audiobook).

Truly honored and grateful...all of a sudden, three new 5-star reviews for Ben Behind his Voices:

1 -"I will probably be listening to the CD over and over again for many years. Gives me comfort and courage to deal with my family member. Thank you so much Randye"
2 -"As a person with schizophrenia, I have never seen the journey through mental illness from the viewpoint of a parent. This book made me think, laugh, cry, and many other emotions. I related in many ways to Ben and saw my own mother in Randye. More people, in varying situations, need to read this eye-opening book."
3- "I am so grateful to the author who shares her story to educate and to enlighten those of us who are taking our first steps out of the chaos"

also came across this one, though it was in the form of a comment on another blog, and I can't find the author's page...(ah, Google Alerts)...

"Ben Behind His Voices is surely an inspirational tale a few family’s encounter with schizophrenia. The main target of Randye Kaye’s book is on her son Ben, who struggled for lots of years with psychological well being and compound abuse matters until finally he was as a final point the right way identified with paranoid schizophrenia. Kaye leads her visitors with the family’s very difficult activities using this ailment and their journey toward restoration and acceptance. This book may be a good source for people with schizophrenia and their families. In addition, it serves as the formidable reminder to psychological well being experts to treat men and women influenced with all the ailment with dignity and compassion."

You have truly made my day, readers. THANKS!

"Making Money Off My Son's Illness"? A response

This post started out quite differently.

I write another blog called Mental Illness in the Family, which appears on HealthyPlace.com, and though I usually keep these blogs separate from each other, I often wonder why.

Today's post on Healthy Place has to do with a topic I often - sadly - must revisit: relapse, or the return of symptoms. in it, I write:

Fellow NAMI Parents at 2013 NamiWalk in CT

I hate schizophrenia because it prevents Ben from moving ahead with his life. It gets in the way of every job he applies for, every friend he tries to make, every dream he has had so far of having a girlfriend, getting married, being a Dad. It forces him to be dependent on medication that he does not believe he needs. It puts him in a position that he knows is a drain on the family. Schizophrenia steals – even when treated to the best of current medicine’s abilities.

Schizophrenia has stolen joy from his eyes, clarity from his mind, possibilities from his future, depth from his

relationships, money from his wallet. He wishes for a car of his own, a job above minimum wage, a life that includes progress – but he seldom complains. His old high school buddy is now the dentist that fills his cavities. His little sister has accomplishments he may never see. Yet he is one of the nicest people you’ll ever meet.

Today, though, it may be hard to be around him. Today, Ben may spend his day sitting at the local Starbucks, the “weird kid always singing to the music in his headphones” sitting in the corner with one cup of coffee for hours (though he does tip well). I hate this. I hate the ticking time bomb, always in danger of being re-set, that is schizophrenia.

In placing links inside this post, I found I had a new review for the book on Amazon. Unfortunately (though I know that, despite mostly 5-star reviews, you can't please everyone)  this reader wasn't too happy.

"WAS DISAPPOINTED WITH AUTHOR'S STORYI HAVE SUCH A SON ALSO...WITH MENATL ILLNESS.AFTER I READ THAT SHE WAS A CELEBRITY ... AND HALF OF THE BOOK IS TAKEN FROM THE NAMI SITEWHICH I ALREADY BELONG TO - SEEMED LIKE I ALREADY KNOW ALL THIS .. SHE IS JUST MAKING MONEY OFFOF HER SON'S ILLNESS."

Now, a big part of me knows not to even respond to a review like this. I also expect that the reader wished I had more answers for her, and that she is as frustrated with schizophrenia as we are.

But I feel I need to say four things in response:

1. I never claimed to have all the answers. I wish I did have them, believe me.

2. NAMI is clearly cited as the source for much of my information. Still, to my surprise, many families and professionals that I meet still have never heard of NAMI. So one of my goals for the book was to increase awareness of it. I'm glad you've already found that resource.

3. "Celebrity"? Wow. Simultaneously flattered  - and puzzled. Does being in the public eye (to a rather small extent, in my eyes, otherwise I surely would have been invited to appear on Oprah...) mean that my son's suffering is any less real? Or my family's journey?

4. "Just making money off her son's illness"? To that I must say: Ha! Ha to that as my motivation, and Ha to that as an income source. I wrote this to increase awareness, refute stigma, inspire change, spark empathy, and to help other families not feel alone. I wrote it for Ben's courage, and his right to receive better treatment, a chance at a future, and the understanding of others.

Still, I do thank you for the three stars, and I wish you hope, support and love in your family's journey. I wish my book had been able to give you what you needed from it. Since we are in the same boat, dear reader, I know your road isn't easy.

"Socialization Over Isolation": Jani, Ben and Community

I am a firm believer in the possibility of Recovery in Mental Illness.

Does "recovery" mean "cure"? How I wish it did - but, at the present time, it means management of symptoms, and it means rebuilding  - of one's life, and also of neural pathways.

I have watched and guided my son Ben through a decade of recovery - the ups and downs, the crises and the careful restoration afterwards.  What this has taught us is that there are four cornerstones to the foundation of the recovery process:

• Medical Treatment (whatever that means for each individual)

• Structure

• Purpose, and

• Community. Love.

Since the publication of Ben Behind His Voices two years ago, there have been three additional steps in Ben's recovery process. One is that he now is employed, and has been for over two years. I've written about this in past posts if you want to know more about that (but it has strengthened the Purpose and Structure cornerstones). The second is that he now rents a room from us, his family. After eight years in a group home and then system failure (also a subject of past posts), home is the best place for him right now, as we continue to hold onto support systems for case management and the path to greater independence for Ben in the future. This experience has also added strength to the Medical Treatment (we supervise meds) and Community/Love corners.

The third change is the one that has also been a surprising boost to that cornerstone of Community. Ben's life now includes friends - including one that currently also rents a room from us, someone Ben met at school. This friendship had brought out a lot in Ben that seemed limited before: talking about relationships, taking bike rides through the woods, hiking, playing card games and video games that are not solitary.  For the first time in over a decade, I hear the sounds of  laughter, cheers, and cars in the driveway as other friends come over to hang out. And, yes, at last, with some of these friends, Ben can say "I'll be right back. Just gotta take my meds with my Mom." A miracle.

Wow. Socialization over Isolation. Yes, please.

The Jani Foundation is championing this cause by planning events for children with SED (serious emotional disturbances) to relate to each other - to provide community where they don't have to feel isolated. (Jani is the subject of the book January First (written by her father, Michael Schofield), and the follow-up airing of "Born Schizophrenic". They have created this t-shirt which echoed my feelings about Ben's recovery. Socialization, especially in places where you don't have to always feel "different", is vital to the process. I learned this in 2001, when I was allowed to attend a meeting of Schizophrenics Anonymous.  This excerpt from Ben Behind His Voices tells the story: 

"I once attended, in 2001, a meeting of Schizophrenics Anonymous. This group is based on principles similar to the twelve steps of Alcoholics Anonymous. After a lengthy conversation with Charlie, the founder of the local chapter, I was granted permission by the group to sit in. The week I went, there were about seven or eight people attending, in various stages of recovery. They asked me to share my perspective as the mother of someone with schizophrenia, and they spoke of their own paths toward recovery. Afterward, we all went out for pizza—because, as Charlie told me with a smile, “We need to practice socializing, you know.” They got the joke. “Besides, the pizza’s only two dollars a slice,” said Bill, another group member. I loved these people. They even joked about their past. They shared a genuine laugh over things they had once believed about themselves: that they had “known everything,” that they were meant to be elected president. This was the first time I had ever heard these stories told with any humor inside the tragedy. It felt like the ultimate acceptance, being able to laugh with each other about it. They had found community, and they had found laughter."

The feeling of community can also happen in Clubhouses,  programs where members are given purpose, and not just a "place to go". People with mental illness, like all of us, have times where they need to be alone and regroup. But too many are isolated too often - as are their families. I have spoken with Jani's parents, and even though we have never met, we share a bond. So do Jani and Ben. They just may not know it yet.

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

Unemployment: Rocking the Recovery Boat

Well, it has happened:  Ben has been laid off from his job.  When I picked him up yesterday, he had just emerged from the "meeting" some of us know all too well. We love you. We think you are awesome. We just have to lay off some people because of the season, and unfortunately you are one of them.

Oh, Ben put on a brave face.  He immediately told me the "good news" that the layoff had nothing to do with him, that they will give him a great recommendation...but I could see it. He hasn't genuinely smiled since he got the news yesterday.

And that hurts. For both of us.

employment supports recovery

This job had been Ben's first since his 2003 hospitalizations - and for 18 months he has been proud to have an answer when someone asks, "and what do you do?"  Even though he is also a college student, after a year and a half of also defining himself as a person with a job, it won't feel like enough to be in school.

This unemployment blow is painful for anyone - I know, and maybe you do too. Still, even with the current economy, a number of us will feel fairly confident we will be hired again, somewhere, to do something.

But we don't have to worry about whether we should disclose a history of mental illness, of several hospital stays in our past.

Ben's current (soon-to-be-previous) employer had been great about that. Even after a relapse in 2011, Ben had been welcomed back to work - and relieved that the "secret" was out, and hadn't made a difference. I blogged and spoke publicly about this wonderful employer - for, by accepting Ben's diagnosis and respecting his strengths, they not only gave him back an important part of his self-esteem; they also got, for themselves, a reliable, trained, enthusiastic employee and team member who always showed up, on time, and worked hard.

Let's hope (and, yeas, pray, why not?) that this particular history can repeat itself. Ben needs a new job. When he gets it, we'll look back and see this had been a mere glitch.

But, right now, it feels like a huge weight. Uncertainty can do that - and stigma is suddenly springing anew after having spared us for a time. And we need to be patient, optimistic, and hopeful.  Maybe Ben  can land a job on his own - maybe he'll need supported employment, a job coach, volunteer work. He - and we - will do everything we can.

I want to see the light come back into Ben's eyes.  Hire him - he's worth it.

Living, and Sharing, with Mental Illness

Sharing Can Shape Our Lives

Before Ben Had a Job, He Took an Art Class and Made These Beads for Me

"For what we are, we are by sharing...and it is by sharing that we move toward the light." These words come from my temple's prayerbook for the Jewish New Year, and they never fail to re-ignite my sense of purpose each year.

Some seem to need this sense of community more than others, perhaps, but the fact is: we are all on this earth together. All of us. Healthy, or living with an illness or disability. Young, old, in between. Introverts and extroverts. Men, women. Different backgrounds, families, sexual orientations, strengths, challenges.

And what we are, what we become, the mark we leave on this world someday - it's a journey made meaningful by the sharing. And for that, we need each other.

How Stigma and Self-Stigma Can Lead to Isolation Instead

I recently participated in a wonderful panel called "Self-Stigma Solutions", alongside three people who live not only with mental illness but also with the stigma that can come along for the ride - both external and internal. Each person shared how they were either told, or told themselves:

• "your life is over"

• "you'll never amount to anything now"

• "you'll never have friends"

• "you may as well just give up"

Well - these people did not give up. They were down, but came back up. They not only refused to believe the stigma, they learned to change the messages they were giving themselves.  Yes, even with mental illness and all the stigma that comes with it, sharing is possible. One of my fellow panelists is now a lawyer, one a therapist, one a counselor - and all share their stories to help others living with mental illness, and their families. Thank you.

As for Ben, he spent years feeling unemployable - which wasn't easy. How do you answer when people say, "and what do you do?", when it's all you can do to stay out of the hospital? Slowly, though, he began to build upon the sharing he was doing: chores at his group home, a commitment to "Anonymous" meetings, volunteer work, helping us with household chores when visiting. He needed to share, to feel needed. And, eventually, he not only returned to college- he also has been employed part-time for almost 18 months. Ben has a bigger playing field, and a clearer structure, for sharing - and it has added to his recovery in so many ways.

Steps Away from Self-Stigma, and Toward Sharing

Three Steps That Can Help Erase the Negative Messages:
1 - Consider the Source of Negative Messages (they may be ignorant of the facts)
2 - Hang On to the Positives (past success, others who believe in you)
3 - Replacement Messages (e.g. eliminate the word "just" or "only" when you describe what you do)

Yes, this takes patience. Yes, it takes rewording your doubts until they look like problems to be solved instead of obstacles that prevent.  Yes, it takes work, and time. But each of them now share their lives, as does my son Ben.

Share Your Light

However we find community - a group home, a clubhouse, volunteer work, a meeting, your family - we each have something to share. And, by sharing, we let our own lights shine as we move toward the greater light we all create together.

See the person, not the symptoms.
See possibility and promise. It's there, with treatment, respect, patience, community, and hope.

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.

Depression out of the Closet: The Boss too

Add Bruce Springsteen to the list of celebrities willing to talk about their mental issues.

Springsteen talks about his lifelong battles with depression in a 16,000-word New Yorker profile hitting the stands this week.

Every time someone in the public eye is willing to talk about mental illness, the door opens to acceptance just a bit more, and stigma is dealt a blow.

Ben and I are trying to do the same thing with our  book. This week I was thrilled to present "Listen Up! Hearing the Family’s Perspective on Illness " as Interdisciplinary Grand Rounds at Bridgeport Hospital, and honored to receive this feedback:

"I truly appreciated your candor, your humor, and your heart in speaking on this topic. I'd like to think I pride myself on empathy and compassion with all my patients, but I know after hearing you speak, I will double my efforts, all around, no matter the condition.  Thanks again for a really worth while and inspiring talk."

To touch another person like that - well, that's the reason I wrote the book and speak out. Thank you.

Yes, right now it is mostly my crusade as Ben's Mom - but someday I hope that Ben will speak out too. I see signs of acceptance in him, but I know he is not ready to say, in public, that he has schizophrenia. That's okay. I will take what we've got, and I know what it takes. Patience. Understanding. Love. And some luck too.

Meanwhile - Thanks, Boss, for your courage and honesty.  You've kicked the door open another inch.

Stop and Twirl: Recognizing a Good Day

(Portions of this article first published as Stop and Twirl: Honoring Joyful Moments with Happiness on Technorati.)

Last month's travels were mostly for speaking engagements and book signings, but one destination was for VOICE 2012 (a voice -over conference), held at the Disneyland resort.  One morning I walked through Downtown Disney, and watched excited families head toward the entrance of the Magic Kingdom.

One of the families had to stop abruptly as they made their way towards the magic. Why? Their little girl, dressed in her princess finery, simply had to stop and twirl, to express her joy and anticipation to the world - and also, I suspect, to feel the thrill of the swishing of her beautiful princess dress.

She was just too happy and excited to merely keep walking. She had to stop and feel the joy. And, by doing so, she marked that moment of happiness not only for herself but for all (including me) who saw her pure expression of happiness.

We all need to do that, I thought. Honor the happy moments, cement them in our memory banks, by taking that simple second to just notice how happy we are. And to share it if we can.

I just returned from Seattle, where I spoke at the NAMI National Convention. The five-day event included many stories of success, but also of heartbreak, frustration, confusion and loss.

The note on the fridge was from Ben.

Yay! I cooked the cauliflower! I added the mushrooms and tofu and used an Indian sauce mix! You can have some. It's in the fridge. Love, Ben

Simple, right? But after talking to so many families whose loved ones were refusing treatment, or whose treatment wasn't working, or who had lost a loved one to the prison system, homelessness, or suicide, that note stood out as a moment of joy to me in its easy simplicity.

Sure, a year ago Ben was in the middle of a relapse. Sure, it could happen again despite all we are doing to walk by his side with love, discipline and hope. Still, right now it's a good day. Ben is in treatment, purposeful, clean and sober, and even employed. He is in the bosom of our family (though he pays rent for his apartment that is so lonely he hates to be there), and even listened to my parting advice to cook and eat the vegetables.

Yes, indeed, a good day. The "other shoe" isn't falling today. So I am grateful. And I'm going to stop and twirl.

Mental Health Links of Hope and Understanding

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

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

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

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

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

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

view the trailer here

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

And here is a story of love and friendship:"

Schizophrenia Makes Finding Love Difficult, But Not Impossible"

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

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

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

Thank you for keeping the dialogue going.

Living with Schizophrenia: Your Family is not Alone

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

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

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

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

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

Rebecca, Claire, Randye at National Council

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

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

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

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

Art and Advocacy: When Worlds Intertwine

Like so many people I know, I have no short answer when people ask me, "So what do you do?". If given just a few words, I guess I can say "I talk and write for a living", or "I communicate professionally." But, really? I am a serious dabbler - and insatiably curious information-seeker and sharer.

Author, speaker, stage actress, singer, voice talent, audiobook narrator, advocate, TV/film/improvisation performer, drama teacher, Voiceover coach, NAMI educator, ADL diversity trainer, presentations coach,blogger, radio broadcaster, MC --and that's just my work life. You know what I mean - how many roles do you play in one day?  My professional website home page even has four portals to explore. Still, it adds up somehow - like when the bills get paid - and even occasionally makes sense.

When I get the chance to speak to audiences about Ben Behind His Voices, it's a wonderful opportunity to marry a lot of these worlds. Here, in this clip from a recent library appearance in Trumbull, CT, you can hear an excerpt from the book as well as some thoughts on Ben's progress and why understanding and respect are so vital.

Many of these roles layered beautifully when I got the chance as voice talent to narrate the audiobook of Ben Behind His Voices. Strange to step out of  the writer's shoes and slip on those of the narrator...oh, the urge to rewrite as I narrated! But I am thrilled that the end result was so beautifully produced by Spoken Word Inc, received starred reviews, and that we were nominated as "among the best of the best" for Publishers Weekly's 2011 Listen Up Awards! In the "read by author" category, we were in great company: John Lithgow, Jane Lynch, Penn Jillette and Amy Chua (Tiger Mom lady).

OK, so Lithgow won - but still. Can't think of anyone better to lose to. I get the "it's an honor just to nominated" thing now - really. Thanks!

Looking Ahead, Reflecting Back: BBHV 2011, 2012

January 4th already. Happy New Year, 2012! Always a good time to look back - but not for too long. Also an exciting time to preview what's possible, as well as planned,  for the new year.

BBHV spotted at social workers Conference

In our family we do a "year in review" of our own as we approach New Year's Eve, and certainly tops for me in 2011 was the publication of Ben Behind His Voices, hardcover and audiobook, and all the opportunities that has brought with it to reach families, healthcare professionals, and PAMIs ("People Affected by Mental Illness", the best term I can come up with so far) with its story, information and messages. This year I have been privileged to present at the APNA (American Psychiatric Nurses Association) Annual Conference, sign books at the US Psych Congress, attend and do a poster presentation at NAMI's Annual Conference in Chicago, and connect with so many wonderful readers at author talk/book-reading events for NAMI, RJ Julia Bookstore, Barnes and Noble, Written Words, Congregation B'nai Israel in CT, Fellowship Place, Laurel House, and many more (see "News and Events" for details).

Exciting, too have been TV and radio appearances on Fox News,PBS, ConnTV, WTNH's "Connecticut  Style", NPR and more to tell our family's story  and share messages like the need for open communication, early detection, more research, better understanding, increased respect, and the importance of purpose, structure, community and love to the recovery process. The Press Room has links to more of these interviews.

On a more personal level, 2011 brought a summer challenge for us, when Ben's treatment services were cut drastically and he was re-hospitalized for almost six weeks. We faced, once again, the possibility of losing so much of what he had gained.  Thankfully, he has returned to us once again to resume treatment and the progress he has been making in school, work, and family. We remain so grateful for yet another chance, and also aware that there is so much work still to be done to improve treatment, medical advances, and attitudes.

So - what will 2012 bring? For my son and family I hope for stability and the continued miracles of "ordinary" life and growth. As for the book and audiobook, I hope for more chances to speak with audiences and reach readers, on a national and international level. I also have hopes for increased outreach to professionals and future professionals. I have heard from so many readers that this should be "required reading" for students in this field, and am thrilled to have been asked to speak at two universities so far in 2012.

Some of this is already in the works for 2012, and Ben Behind His Voices hits the road to (so far): Washington DC in January, New Haven CT (Yale) in February, Phoenix Arizona in March (AZ State), Chicago in April (National Council), with a  stops in the works for Alabama, California, Seattle, Ohio NYC, Boston and more. As they say, stay tuned for details...here and/or at Mental Illness in the Family award-winning blog at HealthyPlace.com.

Thank you for being such an important part of 2011.  Here's to all that is possible in the New Year!

Randye

More than just Meds: Recovery Reminders

It can be so easy to get used to success, then to keep wishing for that higher bar.  I've read that it's a human to forget extreme physical pain - otherwise why choose another bout with labor and childbirth? - but what about the emotional pain attached to crisis periods in mental illness?

All it takes is one gentle reminder and the feeling of stress comes running back in.

We've had, now, almost five months of stability with Ben, ever since the family stepped in to "help" his official care team.  He is blossoming once again after a painful summer reminder that without the right medical treatment as the cornerstone of recovery, the house built upon that foundation can crumble like a house of cards.

Watch for Effects of Change

These days, it's almost easy to forget that Ben has schizophrenia. He just went to his first-ever employee Holiday party, which means he is valuable enough to his company to have lasted this long, even into the off-season. His job has provided so much for him: purpose, community, focus, and a paycheck.  He has something to talk about when someone asks, "so, what do you do?" He loves his job and feels like a person again.

His two college courses, too, have been a source of purpose, structure, and pride. What I wouldn't have given, over a decade ago as his illness was developing, to have heard this from one of his teachers:

"Ben, you did your work with dedication and care for details, you contributed to the class with intelligent questions, comments, and a great sense of humor... You are an A+ student, and your final grade for this class is a well deserved A. It was a true pleasure having you on my class. I hope I'll have the fortune of having students like yourself in my classes in the future."

Wow - yes, I am serious. Those are the comments from one of his professors!

That almost makes us forget that, five months ago, Ben was wandering the halls of a psych unit, talking to the voices he never admits to hearing. The sudden lack of treatment services he had experienced during the summer of 2011 had led to a lapse in his intake of his crucial meds, which in turn led to a refusal to return to taking them at all.

We almost, I must remember, lost him again. But thankfully he returned to what his psychiatrist says is  his "former baseline."  How? Meds in place, the other pieces of recovery could be rebuilt:

Purpose, Structure, and Community(family, friends, co-workers, etc.)

Love helps too. But it didn't seem to stick so well while Ben was in crisis.  Now, Ben is healing - and I see signs of emotional growth I have not seen in years. He cares about school. He is thrilled that, at last, he can afford to buy presents for the family with his own money.

Still,  recovery (or stabilization, maybe a more accurate term) can be fragile. There is so much more to it than the medication cornerstone. This week, Ben seems just a little bit "off" at times.  Is it the meds? Always the first thing we wonder. But I suspect his subtle agitation and occasional lack of focus right now is due more to the thing that affects us all, some more strongly than others:

Change.

In the past few weeks, Ben's school semester has ended, his work hours shifted (holiday closings), and he has been experiencing the excitement of giving/getting holiday gifts. Even as a little boy, Ben was always a little "off" as holidays and birthdays approached. Like many of us, the anticipation and uncertainty was almost overwhelming, disrupting the predictability of life. That's one reason we like this time of year, and also a reason many have an opposite reaction as extreme as depression.

It's good to remember that schizophrenia recovery is not just about meds. Ben was anxious around the holidays as a child, so why should his basic nature change now?  It isn't always about the meds - it can be about life. Purpose, structure, community: these things help shape us all.

So we will keep our eyes open, naturally. But also our minds. When life settles into routine again, I think Ben will too.  That has been his pattern since way before his illness entered our lives.

Happy holidays to all!

Defying Mental Illness: a pre-review

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

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

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

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

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

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

Connecticut Style, WTNH: Interview with Jocelyn Maminta

Jocelyn Maminta is a wonderful journalist and talk-show host - and our paths have crossed many times throughout the years. During my years as a radio personality,  speaker and now author, we often appeared together at local events, and I've had the privilege of hearing about her personal inspiring project, Caroline's Room. She is a skilled newswoman, warm and genuine person, and a fellow working Mom.

Today Jocelyn interviewed me for WTNH's daytime show, Connecticut Style. Thanks to all involved for the chance to share our story and increase awareness of Ben Behind His Voices, as well as the reality and hope it contains.

Ben Behind His Voices: wtnh.com

Practical Advice: Treatment Advocacy Center

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

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

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

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

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

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

Risk: The Price of Independence?

Ben has been spending a lot of time with us lately; in fact, this is the closest we've had to daily contact since he lived with us prior to his first hospitalizations in 2003.  It's different now; he has grown.  Eight years in a group home have taught him independence, respect and self-esteem that he'd have never gotten under our roof, safe within our wings and safety nets.

But there is a limit.

Since his episode this summer (right after the too-swift move to unsupported housing), we have had to step in and help guide Ben back to the self-sufficiency he'd earned before. Now, though, I don't trust the services he is receiving - and, I think, he doesn't like living alone as much as everyone said he would.  So, much more often than before, he spends the night with his family.  We drive him to school, to work, to meetings - feels like high school years all over again, pre-drivers' license.  It's fine for now, because it's what Ben needs. But we encourage as much independence as we can, to boost him back up to the mental illness version of young adulthood.

Two nights a week, therefore, he stays at his apartment after school and then takes the bus to the "anonymous" meeting he has attended for six years. Last week, to our horror, this solo journey into a questionable area of town resulted in near-disaster. Ben was mugged. His cash, his beloved backpack (containing precious cargo: textbooks, school papers, handheld video games, poetry, the ipod he had saved for for over a year), his keys - all stolen. Psychically, it could have been so much worse - he was thrown to the ground and threatened with what they said was a knife , but he got away with a wrenched shoulder, a red mark on his neck, and some scrapes. Whew. But now he is, understandably, skittish. He won't go into that neighborhood again, and he is easily spooked now. Anyone would react that way - but with mental illness complications there is addition worry: will the stress trigger symptoms? will he backtrack in his progress? will pain relievers interfere with his meds?

We count ourselves lucky, of course. He is alive, and somehow we will replace the physical things he has lost. He reacted very sanely to the threats - "take anything you want, just don't hurt me." Thank God. But he feels violated, spooked, and afraid in ways of the independence he has worked so hard to regain.

One day at a time. I think we'll drive him to meetings in safer places for awhile. I'd rather he be safe than independent right now. And the delicate balance continues.

The Miracle of Ordinary

"When you've lost the miracle of ordinary, and you get it back, you never forget to be grateful...to say, This is a really good day."

Those are the last thoughts expressed in my recent interview with Mark Herz on WSHU, a Connecticut affiliate of NPR. Listen to the WSHU/NPR interview here ( 4 minutes)

Yes, ordinary can be miraculous. Cooking a dinner together. Driving your child to work. Nagging you son to finish his Shakespeare essay, when only three months ago he was wandering the floor of a psychiatric unit, unable to focus on conversation for more than a moment.

BBHV sighting: Barnes & Noble, Norwalk CT, Psychology face-out next to Jung!

Our tendency as adaptable beings is to adjust to new situations so quickly that we may forget to notice the joys.  Like that first night when you can actually breathe through your nose again after a cold...or the moment the fridge hummed back to life after the power blackout. The first time you see your memoir displayed at the bookstore. Pure joy! But days or hours later we shift our gaze to the next hurdles and may forget to be happy. It only takes a moment to step back and reignite appreciation. I want to remember to do that more often.

Awareness.  And especially this week, which is designated as "Mental Illness Awareness Week." Not just mental illness, but mental health. As I look back on the book launch party on Sept. 20th, the miracle of Ben's attendance at the event, and the support he chose to show, is indeed miraculous to me.  As the next events unfold (more interviews, upcoming appearances - see the news/events page) I hope that while Ben Behind His Voices does spread awareness about mental illness, it will also spread the messages of understanding, respect, hope, and the value of a therapeutic alliance between families, patients and healthcare providers.

And I hope I never forget to value the precious good days that are beautifully ordinary - and that the book helps reignite that spark in its readers.