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.

How Families Slip to the End of the Rope: Mental Health System Cracks

As we approach the third Anniversary of the publication of Ben Behind His Voices, the big question remains. How would Ben be doing without family support? Have there been any improvements in the system that failed my son, and our family, so many times in the past?

Want an update? If you missed it in an earlier post, here is the progress since the last page of the book (where Ben is still living in a group home, back in college classes, and doing some volunteer work). Many of the details are outlined in earlier posts (check category "How is Ben Doing Now?"), but here is the current picture, about which I am so grateful:

• Ben continues to take college courses, 6 credits at a time.

• He lives at home with us, and pays rent. (this after a disastrous housing change from the group home)

• He has a JOB! He is a waiter in a chain restaurant, and absolutely loves it.  He is often in the top three for tip-earning, and has often been asked to stay and supervise the closing process. Yes, amazing.

• Although he had a roommate here for awhile, that ended badly (with the roommate's addiction and connected behaviors) - but Ben has managed to salvage the start of an actual social life now. One step at a time.

Help Us before we Get Here!

Still. All of this progress can go away in record time - and often has, in the past - if something interferes with the meds he takes.

Families like ours walk a tightrope, struggling to balance all the elements of progress when someone we love has a "neural difference." And we cannot do it alone.  So it really pisses me off when our competence creates laissez-faire among the people supposed to be our support.

1. Last Friday, I noticed we were almost out of Medication A (Ben takes 3 things). So I called the pharmacy to order more.

2.They could not place the order because they had not received paperwork from the case management team. So I called his case manager, and also sent an e-mail. No answer.

3. Had to wait until Monday for further action. (No one works on weekends). Didn't think it would be an issue.

4. Monday: Called pharmacy again, still no paperwork, which was supposed to have been faxed from the Lab ten days before. Went to the Lab in person. Though they recognized Ben's face and confirmed he had been there recently for bloodwork, this visit somehow was "not in their system". So we did the blood work again, just in case. Thank goodness we did.

5. Meanwhile, we are now dangerously low on Med A. If Ben doesn't have a full dose of it, he will exhibit a  serious behavior change at work tomorrow, jeopardizing everything he has worked so hard to achieve.

6. I call his case manager again. Turns out he is on vacation (no one had told me, and there had been no out-of-the office email reply). Voice message says call the main number, where they tell me to talk to the nurse. I do. He says nothing can be done without the paperwork, which I had assumed had been faxed, and had counted on the case management team to notice if that hadn't been done. Back to the front desk/main number. They then tell me to call another case manager covering for Ben's, but that she is out to lunch. But I can leave a voice mail message.

7. I call the second case manager, leave a message. Her voice mail gives the wrong date and has no mention of not being in the office that day.

8. I wait three hours. No call-back. So I call the main number again. "Oh, didn't they tell you? She's on vacation." No they did not.

9. I call the nurse again. He spends ten minutes telling me why he can't do anything to help me because the NEW paperwork (from this morning's blood test) is "Pending", and the old paperwork had never been faxed. I begin to beg, plead, then finally yell. Why am I supposed to do everything, keep track of everything, supervise the meds, drive my son everywhere - and yet the one or two things I ask his "case management team" to help with - keep track of the paperwork, including making sure his benefits are intact and meds are on track) slip through the cracks? When they are being paid to "manage" his case?

10. Finally, in desperation, I call the pharmacy, which is about to close. They, amazingly, offer to help by giving me enough of the meds to get us through until the paperwork in processed the next day. 

…but not disaster, if we catch it in time!

Crisis averted. But - if not for an empathetic pharmacist - Ben could have severely damaged his reputation at work. And the fallout from that would truly have been devastating to him.

So - case managers - if you are lucky enough to have a family helping in the recovery process (and most of us want to, if we just get enough information, support, and resources) - PLEASE, at the very least:

• Let us know if you are going on vacation, and who is covering our case

• Have the front desk be aware of days off and what else a family can do

• Notice if paperwork is late. Call the family, and your client.

• Hey - please don't wait for a crisis. Call your client once in a while and find out how they are or if they need anything.

We may seem like the "easy case"  because families do a lot of the work - but believe me, we need your support.

Do we have to be a squeaky wheel to get it?

Does there have to be a crisis to get some help? Some answers?

Listen, Ben is my son and I love him. Like any loving parent, show me the way to help and I'll do it. Ditto my husband, my daughter, my son-in-law. But the question for all of us - not just our family, but any others dealing with a family member with special needs: What would happen if we couldn't be here? What will happen when we are gone?

Families cannot do it alone.  The mental health system is complicated, full of red tape, hard to navigate, and full of holes and cracks. Don't let us slip through to the end of our ropes.

Thank you. 

Families: Has the mental health system driven you to the end of your rope? How? Feel free to comment.

Mental Health Awareness Month, for Caregivers too

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

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

Schizophrenia and 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

!

"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.

Amanda Bynes: Will She Become the Celebrity Face of Schizophrenia?

Amanda Bynes is in the news - again. But this time, much of the focus is on the possibility of a schizophrenia diagnosis.  I mention this to Ben, and he says, "Hmmm. Interesting." This story will not, I suspect, make a dent in Ben's insight into his own illness - not now, at least. Patience is key when you love someone with schizophrenia - along with many other qualities.

But we follow the story, to see what the media does with it.  I see Hollywood Gossip report she is on a "drug cocktail" and comment:

"I'm so glad to hear that Amanda is responding to medication (not "drugs"...these are medications to restore balance, not drugs to alter it). Yes, the big question is there: will she take the meds on her own? In my experience, probably not. Many medical reasons for that (see "anosognosia") but her parents should definitely go ahead with conservatorship. It has been a huge help for us! I blogged about this at healthyplace.com, website with great info and support."

My blogs on conservatorship have gotten the attention of Marketplace, a smart and fair show on NPR that is business-oriented, and they have invited me to be part of a show  (coming up this week) on the topic of conservatorship, with Amanda in the news and all. This same issue came to light in when Britney Spears' parents sought to help their child after bizarre behaviors in public brought attention to her possible mental illness as well.  At that time, I was booked to appear on Dr. Drew's HLN show, but got bumped by a Hurricane Irene story. This time, I hope I can be of some help on Marketplace, sharing the family view of how conservatorship can help.

I am Ben's conservator, but it doesn't mean I run his life, or control him. I am simply allowed to help him when he needs the help - and, yes, sometimes when he doesn't know he needs that help. (when schizophrenia symptoms take hold.) It's a safety net. And we need it.

Watch this blog for updates!

"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!

"Silver Linings Playbook" and Meds: Why the Secrecy?

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 asauthor 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.)

The Mental Illness Family Experience:More Reader Stories

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.

The Tragic Newtown Shooting: Attention Must Be Paid

The horrors of 9/11 got us into wars overseas, and the memories continued to be used to justify our involvement there. Will the tragedy in Newtown get us into a war against easy access to assault weapons, underfunded mental health services,  stalled research, and lack of support?

Never Forget. Act to Prevent.

Details continue to unfold about what might have contributed to the horrific incidents Friday in my neighboring town of Newtown, CT.

It is beyond comprehension, yet we struggle to find some threads that might prevent a repeat of it.

Many will, I hope and pray, start to listen and make changes to some of the issues involved: smarter gun control, earlier detection of mental health problems, and more access to (and insistence upon) treatment for those problems.

As we struggle to "search for solutions" (this week's topic on Good Morning America), I hope we also get to find out what Adam Lanza's mother, Nancy, had struggled with.

• Did she try to get help for her son, only to be denied because he was "legally an adult, and there's nothing we can do now"?

• Was she left with no choice but to home-school her son after he dropped out of high school?

• Was she lost in a desperate attempt to hang on to some sort of bonding with a son she loved, but was losing to mental illness? (in her case, by teaching him about guns, taking to shooting ranges)

• Did she even know how to navigate the confusing world of mental health services, only to find no road map, no support, no funding?

• Did the stigma and blame of having a son with mental health problems keep them isolated and feeling there was no community left for them?

All of these things were true for us, at times. We had to, have to, fight every step of the way to get help, support, understanding. We are lucky. Ben's nature is sweet and peace-loving. Even his "grand delusions" when in psychosis were about writing the perfect poem that will create world peace. Also, we found help and community in NAMI, and Ben got support from an ICCD clubhouse, a residential facility, outpatient treatment, and newer medications that had not existed decades ago.

But the truth of the matter is that too many familes (like, I suspect, the Lanzas) simply give up before they can find help and support. They are left to "fix it themselves." Too many families are wiped out financially (as we were), emotionally (as we often were) and socially (as we sometimes were) before they find new paths to recovery. To help these families, I wrote our book, "Ben Behind His Voices", and advocate for the kind of help that might have prevented Adam Lanza from committing the most horrific crime the world could ever imagine.

I don't "know for sure" (Oprah phrase) that this tragedy could have been prevented. But, as the mother of someone who has a mental illness and has managed to find hope, I can't help but wonder - no, suspect - that the answer is yes. This did not have to happen.

We must all fight for understanding, research, funding of services, turning stigma into treatment, and supporting the families who are, too often, ill-prepared to fight mental illness alone.

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.

CIT International: A Mother's Gratitude

I have just returned from the CIT International Conference, where I met so many who are passionate about their crisis and mental health work - and though I came there to share  the family view, I learned so much more than I offered.  And yet - everyone who met thanked me for being willing to share our story, and the family point-of-view when crisis hits. Wow. (No, thank you...)

over 400 books personally signed with thanks to CIT folks!

Who was there? Police officers, mental health workers, detectives, Police Chiefs, Psychiatric Nurses, Psychiatrists, corrections officer, security guards, consumers, and family members like David Kaczynski, who spoke about his sibling experience as  brother of the so-called "Unabomber" - though that relationship had so much more to it. David's love for his brother was clear, as was his agony over his brothers' illness: schizophrenia.

When my son Ben was in the first stages of recurring psychosis, when we were waiting for him to get "sick enough" to finally earn a bed in a psychiatric unit (don't get me started on this), we had many encounters with our local police officers while Ben - and we - were in crisis.

I am so happy that these officers were trained in crisis intervention - for their kindness and empathy toward Ben, Ali and me made our traumatic situation more bearable.  And - even more importantly - their CIT (Crisis Intervention Training) made it possible to avoid the trauma-upon-trauma pile-up of emotions that could have escalated the crisis instead.

Lucky for us, we did not have to experience needless "super-escalation."

Lucky for us, our town's officers were either CIT-trained, or listened to the feedback and tips of those on the force who were.

To those who have taken the time to learn and choose Crisis Intervention Techniques over "Power" actions that are also an option, I thank you.  Your kindness and willingness to empathize has made all the difference for this family.

Here's a radio news story on CIT in Connecticut (my home state) from NPR affiliate WSHU - where I sometimes work as classical music host or newscaster.  Mark Herz also did an interview with me on Ben Behind His Voices.

Surviving Stigma: Families Speak Out

This training video for NAMI, the National Alliance on Mental Illness, is used to help family members of those with mental illness cope with stigma.

This was produced by Danolas Productions, and I was proud to be part of it. Families who survive stigma can be more helpful partners in recovery (and if the stars align just right...) View the trailer below.

Richard Dreyfuss on Living with Mental Illness

Bravo, Richard Dreyfuss. Not only one of the best actors of our time, but he is speaking openly about his experience with bipolar. As reported last week in the Herald Tribune in this article by Barbara Peters Smith, Richard recently appeared in Sarasota, FL  to speak on “Living With Mental Illness” for the Mental Health Community Centers. The event was sponsored by the Sarasota Memorial Healthcare Foundation. 

In the accompanying interview, Richard says,

Dreyfuss:On an airplane the Delta magazine had an article about corporate executive depression. It said, “If you have any four of the next 14 …” and I had all 14.I got off the plane and called my psychiatrist and said, “we have to kick this into high gear. We have to start and get a solution. If we don’t, there really is no reason for me to go on.”

Herald-Tribune: About what time was this?

Dreyfuss: This was in the middle ‘90s. He said the wisest thing I’d ever heard. He said, “Richard, somewhere in your head is a faucet that is dripping either too quickly or too slowly, and we can help you.”  I can’t tell you the relief that lifted off my shoulders at that moment.

He goes on to share a lot of his experience, and his feelings about how the disorder has affected his life - from birth. Richard has joined the ranks of those of us - people affected by mental illness as well as those who love them - who refuse to feel shame or blame because of a physical illness of the brain. Someday, mental illness will receive the same respect (especially in research and availability of treatment and services) as other disorders. Each story, we hope, bring us closer to replacing stigma with understanding and a vow to improve the way things are.

Here is the comment I left on the site:

Thank you Richard, for sharing so honestly and openly. The fact that the medication that helped you the most was discontinued due to "lack of profit" is appalling. As the mother of a son who has schizophrenia (and I am so very proud of both my children, too!) I can tell you that while his medications are far from perfect, it is that  certain combination that has enabled him to stabilize enough to become an A college student and a valued part-time worker. As for our love? He always had that - but it is easier when psychosis is kept at bay.  The right medication can begin the process. Add love, support, purpose, community and understanding instead of stigma, and we've got a chance at realizing potential. I love your work - always have. And now I can appreciate what you may be going through as a person. Thanks for telling.
best, Randye Kaye
author of "Ben Behind His Voices:One Family's Journey
from the Chaos of Schizophrenia to Hope"

CELEBRATE THE LIVES OF YOUTH TOUCHED BY MENTAL ILLNESS

COME AND CELEBRATE! I am thrilled to be one of the speakers at this event, but the real stars are the young adults touched by mental illness, and their art and writings. After that, I will meet and speak with member of Families Anonymous in Connecticut. Sharing is healing.

VOICES ART EXHIBIT SEEKS TO RAISE AWARENESS AND CELEBRATE THE LIVES OF YOUTH TOUCHED BY MENTAL ILLNESS

The National Alliance on Mental Illnesses of Connecticut (NAMI-CT) and Young Audiences of Connecticut/An Affiliate of VSA join hands to raise awareness and reduce the stigma associated with childhood onset mental illness through the art exhibit, Voices: The Art of Children, Adolescents and Young Adults Touched by Mental Illness. The exhibit features the work of more than 30 artists between the ages of 8-21, all of whom are either living with or are a family member of a young person living with a mental illness. The Voices exhibit will provide these courageous individuals a venue in which to express their feelings and a window into which others can gain access to their personal lived experience. Several of the youth will be present beside their artwork to share their story of how the illness has been a challenge, as well as an opportunity for personal growth and increased self-understanding.

The exhibit will take place from April 2-13th at the Legislative Office Building, 300 Capital Avenue in Hartford between the hours of 9 a.m.-5 p.m. Monday-Friday.

The Artist Reception will be held on Tuesday evening, April 3rd from 5-7 p.m. and will feature several speakers including Randye Kaye- actress and author of the book, Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope and Deborah Mendoza and Jana Pietrzyk- two Voices artists and inspiring advocates.

For additional information on either the Voices exhibit or reception, please contact Ann Nelson, NAMI-CT, at either 203-927-1541 or familyresearch@namict.org.

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

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

The story, according to the website, is this:

Isti and His Amazing Art

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

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

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

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

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

A Moment of Clarity” is his story…