"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…

"Shut Up About Your Perfect Kid": Book Review

Gina Gallagher is co-author with her sister Patricia Konjoian of Shut Up About Your Perfect Kid: A Survival Guide for Ordinary Parents of Special Kids.  I first saw this book at NAMI's 2011 National Convention in Chicago, and found it full of useful and realistic information to go with the catchy title.

The authors also write a Shut Up About Your Perfect Kid blog , and I highly recommend that as well.

Since Ben Behind His Voices will be at this year's NAMI Convention in Seattle, I hope to find Shut Up About Your Perfect Kid available there once again, right along with mine.  I could have used this book when Ben was going through frightening changes that shook my parenting confidence to the core.

Here are some things not to say, according to the authors (details in their book and blog):

1) "I don't know how you do it."

2) "Give me your kid for a week and I'll whip him in to shape."

3) "You poor thing."

4) "I'm so lucky, my kids are healthy."

5) "If that were my kid, he'd be different."

As the mother of an "imperfect kid" whose imperfection happens to be gradual-onset schizophrenia which began in his mid-teens, I have been on both sides of the fence; I went from proud Mom (though I like to think I didn't brag) to confused/embarrassed/guilty Mom, and back to proud Mom with a new set of criteria for my pride.  If you need a friendly, realistic and exceptionally empathetic and informative guide to how to maneuver your way through the world of "Perfect Families", I highly recommend this book. Check it out!

Mental Health Students: Learning from Personal Stories

This entry is a synopsis of a recent post in my "Mental Illness in the Family" blog, where I talk specifically about how mental health nurses have made a difference for Ben, and for our family.

I know from conversations with mental health professionals that they often feel unsatisfied with the fact that they seldom get to see the results of treatment: patients doing better, people in recovery. For mental health nurses, there is no equivalent of the "reunions" that NICU nurses get to see , to witness  the premature infants they'd cared for, now healthy and grown. That is a shame, I think. I wish sometimes that Ben could "visit" the hospital where he got stabilized, to share how well he is doing now. Maybe someday.

Nursing Students at Fairfield University

For now - I feel really proud to have had the privilege of addressing a group of mental health nursing students at Fairfield University in Connecticut. Their professor, Joyce Shea, had heard me speak at the APNA (American Psychiatric Nurses Association) Annual 2011 Conference, and assigned Ben Behind His Voices as required reading for her mental health nursing students.

To my great delight, Ms. Shea shared with me some of her students' reactions to the memoir, and invited me to speak with them about how mental health nurses can make a real difference in the family experience when mental illness results in hospitalization.

The students had to answer some questions after reading the book, and Ms. Shea was kind enough to share their answers with me.

Question #3 was thought-provoking: What would be like to have Ben as a client?

some answers: "a great experience because these people are special and unique...frustrating because he can be stubborn...challenging yet rewarding to see improvements...his illness does not define him..."

Question #4 brought tears to my eyes: What would be like to have Ben as a brother?

some answers: " like most other diseases mental illness is a family disease...emotionally draining, difficult not knowing what would come next...struggle to accept everything...scary not knowing which version of my brother I would be dealing with each day...however Ben is very loving so it would probably also be very rewarding if I could help him..."

Not an easy question, perhaps - but a key to the compassion that helps families so much.

I loved meeting these students, and hearing their commitment to the work they are training to do. I was thrilled to have the chance to humanize not only the patients they will meet in their careers, but their families as well.  Since they had already read my book, the messages only had to be reinforced rather than introduced.

I look forward to similar opportunities in the future. One of my hopes for Ben Behind His Voices is that it will reach the professionals, both practicing and in training, to help them see the human face of the illnesses they will try to treat.  I speak soon at Arizona State, Mount Union, and other venues. Please feel free to contact me if you would like to know more about Ben Behind His Voices as required reading. Thanks!

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!

Diagnosis, Schizophrenia: What Came Next?

Interview on Conn Jackson' show, Get Connected-- he on windy Manhattan (California) Beach, me in a nice warm studio in Manhattan (Big Apple). He asked some great questions, and allowed me to highlight the importance of therapeutic alliance, NAMI, early detection, reduction of stigma, support and education for families, and the importance of love and hope.

Thanks, Conn! Here's what he had to say about the interview on YouTube:

"Watch as Randye Kaye, author, tells us about her son's struggle with schizophrenia and how she helped him though it. Why is Randye's secret advice? Watch and find out!"

Satellite Media Tour: Tales from the Virtual Road

Wow. Last Tuesday, all from the comfort of the Murray Hill Studios in NYC, I had the privilege of appearing all over the country thanks to the magic of Satellite - and a fabulous make-up artist didn't hurt, either.  Here's one interview that aired on Fox News (.com).

Since Peggy Ann couldn't see me at first, she thought I was a "he" at first - a problem my mother tried to solve by spelling my first name with that "e" at the end, ages ago...) - but then, of course, I countered with my own slip-up, calling her Betty Ann. Not on purpose, I swear. After several interviews in a row, the brain tends to freeze a bit like an overworked computer.

This was a fair and neutral interview, although that word "unfortunately" did creep into her medication question. I think I handled it fairly, though. What do you think?

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.

Parenting, Illness, and...Guilt?

Amanda Fellows, a fellow voice talent and radio host for Business Women Connect, interviewed me today for her show on Blog Talk Radio.  We had a luxurious half hour for the interview, rare in commercial radio. Of course, it went by in a flash.

Amanda Fellows

Amanda asked two questions I hadn't heard yet in this round of interviews for Ben Behind His Voices. One was about the process of narrating my own words in the audiobook, published by Spoken Word Inc. (since we are both voice talents, that question wasn't too surprising). The second was about two of the book's chapters, and my feelings as a parent when I had to let go of Ben and allow him "freedoms" that terrified me: once when he wandered homeless in Idaho, a few years later when I had to declare him homeless in order to get him into the system of state care that would eventually help him recover without my constant watch.

Amanda asked, "How did you deal with the guilt?"

My answer had to do with recognizing the difference between productive "appropriate" guilt (e.g. forgetting your kid's birthday and making sure you never do it again) and unproductive "inappropriate" guilt (e.g. I feel bad that I had to ground you, and you missed a party).

Mental Illness certainly raises these stakes - raises them high - but still guilt can be a waste of energy, and can hold back progress that is painful but ultimately necessary. You gotta do what you gotta do.

You can hear the interview here:

Listen to internet radio with Business Women Connect on Blog Talk Radio

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.

PBS, ABC, Boston Globe, and the Flu

when mommy's hug could cure

Ben has spent the night - we've all been there - worshiping the porcelain throne.  Either a stomach flu, or spoiled Chinese food (thanks, Hurricane Irene), but who cares why? Poor thing is in pain. No mom wants to see that. Plus, he is whining! Ah, yes, nothing like a 29-year-old whining "Mommy...." - but whenever I'm sick I want to do the same thing, and my mother's been gone since 1994.

There's an additional issue, of course, when your child has schizophrenia. Will he, can his body, keep the meds down? Last night we carefully orchestrated the meds between episodes, and since they are mainly in liquid form we can only hope most of them got into his system somehow. We counted (believe me, we both had one eye on the clock) 55 minutes from ingestion to, um, rejection.

Ben's main concern, despite his pain? "If I throw up, I won't have to go to the hospital, will I?" I thought, at first, that he was over-dramatizing his stomach pain - but then realized he was worried about having to go back to the psychiatric unit for missing one dose of meds. I'm beginning to think this last relapse really affected him - and that maybe - just maybe - he is connecting the stay to his low levels of meds at the time.

I hope so. but - as always - one day at a time. And this morning, thankfully, he is on the mend.  He had to call in sick to work, which he hates, but at least he's staying put on the couch. And his first question this morning, after making sure we called his employer, was: "When should we do meds?"

taping 9/7/11 - watch for airtimes

Meanwhile - The Boston Globe ran a feature on the book recently, and I will travel to Washington DC next week to appear on an ABC-affiliate talk show live at 11 AM, then tape "To the Contrary" for PBS.   First really big-time appearances for the book. What if they ask me what my qualifications are? I wonder that, too, as readers are starting to write to me, asking for advice that I wish I had for them.  All that I know is in the book, and though I wish I could solve others' problems I know I can't. Here's my thought:"

I'm just a Mom who never gave up on her son - but who also learned that, someday, she might have to."

Please visit the new "Press Room" page,  for info and links to more articles and interviews.

Sharing the Message: Interviews, Reactions, Reviews

I had the pleasure of being interviewed on WBAI  in New York by Armand DiMele, for his popular broadcast "The Positive Mind" .  The show aired on August 23, 2011, but you can listen to the archived show here:

If you'd like to read more about Ben Behind His Voices, I've had the pleasure of being interviewed by several writers recently. Here are a few links:

Review and Interview

Oakland County Moms Interview,

Schizophrenia - Parenting Mental Disorder

Mental Illness Recovery: Four Cornerstones

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

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

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

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

Parenting with Challenges: Sense of Humor Required?

interview, "Family w/ Schizophrenia finds Hope

With the official launch of Ben Behind His Voices less then three months away (OK, by one day, but still...), interest is growing and I've been lucky enough to appear on a few talk show already.  One interview, longer and more serious in nature, is on the HealthyPlace.com website.

A few days prior to this web interview, I appeared on Jaki's Buzz with Wendy McGee, talking about balancing motherhood with a career in broadcasting,acting, and writing.  This is a fun interview with great reaction so far, but one viewer did comment that he thought the subject of  "parenting when schizophrenia hits" was treated too lightly here. 

Seriously? You know, when someone in your family has a mental illness, it does suck the sense of humor right out of you at first. You're too busy reacting, and coping, and trying to fix things. But you know what? After a while, you've got to find yourself again.Sure, you've got to take care of what your loved  one needs, as best you can. But after awhile you realize there's only so much you can do - at least for the time being. And then you've just got to take care of yourself - and, yeah, there's the rest of your family and others in your world who need you to be yourself too.

taping Jaki's Buzz

While Ben was developing his illness, I was a morning radio personality. Make 'em laugh. And you know what? Some mornings - coming in to work fresh from an all-nighter at the hospital Emergency Department admitting Ben for yet another stay - it was no small feat to find the sense of humor I needed to be entertaining on the air. But each and every time I had to do this, it helped me. It helped me to remember that there are parts of life that go on, that are enjoyable, even when heartache lurks around the corner. It reminded me that I was more than just the mother of a son who had just had a psychotic break.

So bring the laughter on.  Believe me, when you need to get serious, you will. You need all sides of you to be the parent, wife, sibling, child, friend or professional you need to be. Take care of yourself too. Sometimes it's all you can do.

Henry's Demons, review

Henry's Demons: Living with Schizophrenia, A Father and Son's Story by Patrick Cockburn

My rating: 4 of 5 stars

Henry's Demons is an insightful look into both the family experience when schizophrenia strikes a loved one, and into the U.K. System of care.  As a parent in the United states, I couldn't help but compare Henry's experience (e.g. months at a time in the hospital) to my son Ben's story here in the United States, where it seems that every day the hospital must justify the stay to the insurance companies.  I must admit, I was a bit jealous at first; yet, I don't see that Henry benefited much from his extended stays, so maybe not. Hmmm.

Cockburn writes movingly and intelligently about his father's-eye view of Henry's illness and the actions it triggers; as a journalist, though, he focuses on many of the issues and facts more than his emotions about Henry's illness.  Through Henry's chapters - a unique feature of this book - we get a view of what incidents were like from the point of view of someone who is suffering from schizophrenia, and actually hearing the "voices" that encourage him.

We don't get to know Henry much before his illness, though there are glimpses.

Henry spends a lot of time hospitalized; he also spends a great deal of time escaping. How is this so easy to accomplish? Yet, I have no doubt that every word is true.

This is a great addition to anyone's understanding of the family experience when mental illness strikes. Indeed, it can happen in any family.

View all my reviews

Faith Leaders: How Can You Help Your Congregants?

Did you know that, according to Mental Health Ministries,

"Surveys show that sixty percent of Americans seeking help with mental health issues turn first to ministers, priests and rabbis. This is twice as many as those who went first to a psychiatrist, psychologist or family physician."

Wow! Not only that, but not all of these leaders are adequately prepared with the information to provide the help that's needed. Here's a link to wonderful resource you can download:

http://mentalhealthministries.net/links_resources/study_guide.html

This is full of lots of wonderful information. I guarantee it will set you on a realistic path toward being of real help to your members who are so in need of your support when mental illness comes into their family.

Thanks for all you do!

Dream and Reality: Happy Thanksgiving

I had that dream again.

Ben is missing. No one has heard from him since yesterday - or is it a couple of days? He isn't answering his cell phone.

Finally I go to the last place I saw him: the beach. We'd dropped him off there for a party - a party. He was invited to a party, with actual friends, and he hasn't chosen to come home. After these past few years of rebuilding his life, he might have erased it all in 24 hours of what he thinks of as freedom: freedom from the structure of his group home, freedom from the rules when he visits us, and - mostly - freedom from his meds.

At last, I see Ben. He's slumped up against a wall. He's drenched with what I assume is seawater from his hair to his bare feet, and he's smiling to himself. I'm appalled, disgusted, and relieved, all in one huge rush of familiarity. It takes some work - I have to make my voice clearer than the voices he's hearing again in his head - but I finally convince him to come with me, back to Harrison House where he lives.

In the car, I want to scream at him, shake some sense into him: How could you? You were doing so well! You love college! You finally have friends! What's wrong with you? But I know this will have no effect. I simply say, "Why, Ben?"

He replies, "I just felt like it. And I feel so happy now. Those meds don't let me be myself!" And I think: I probably should take him straight to the hospital. He looks like someone I'd report to the police if I saw him wandering in my neighborhood. Is this the same person who was working on his final school paper just two days ago? How quickly it can all fall apart.

I can control none of this, so instead I just remind Ben to brush his teeth when he gets home. I can see how unhealthy and yellow they are. He admits, with a malicious grin, that he never brushes his teeth, and never intends to. And that's when I lose it, screaming at him at last about the only thing I can grab onto: his hygiene, and the fact that I pay his dental bills and he's better start brushing his teeth. I want to say: take your meds! take your meds! I can't do this anymore! Part of me wishes he'd run away so far that I can't find him. He'd figure it all out himself, then, right? And we'd be free of the burden of trying to "fix" him, again and again. We'd be sad, but we'd be free. And, even in my dream, I hate myself for having these thoughts, for I love this child so much.

And that's when I wake up. That's when this nightmare ends and I open my eyes to the day before Thanksgiving, knowing that Ben is indeed safe in his bed at Harrison House because my husband drove him home last night from school. I awake to only the stress of finishing some work today, and cooking Thanksgiving dinner tomorrow. Ben will be here, will sleep over, and we will - as always- supervise him as he takes his meds and watch him for a half hour after that so he doesn't throw them up in the bathroom.

Easy. Compared to that dream? Easy. I know that dream all too well, because we lived it - in real life, in one form or another - so many times.
But it's a better "real life" now, one where - for this moment in time -I can wake up to a world that is a relief from my dreams about Ben. There were too many mornings in the chaos times where I wanted to stay in my dreams where Ben was healthy, for the reality of his illness was so hard to absorb.

Tomorrow will be our fifth Thanksgiving in a row where Ben is present, mentally and physically. He'd been in the hospital for too many holidays in the past, but he'll be here tomorrow. Yes, so much to be grateful for this year: Ali's marriage, the upcoming publication of my book, and Ben's life. For the moment, all is well - and the moment is all we ever have. I intend to fully feel the happiness, for that's how we honor it.

Happy Thanksgiving!

Gentle Reality Check - and LEAP with Xavier Amador, Ph.D.

Sometimes Ben’s behavior is so wonderfully ordinary that I almost let myself imagine that none of this ever happened: the hospitalizations, the calls to the police, the fear and chaos.  I can forget, for a while, that Ben has a serious mental illness.

It’s Yom Kippur. I can see Ben in the congregation at services this year, from my place in the choir. He is clean-shaven, dressed up, sitting next to his sister and her fiancé. My growing family. I feel so joyful to have them all here, together.  They’re all participating, even listening to the Rabbi’s sermon on apologies. Still, I keep checking on them – well, on Ben – every few minutes. Sometimes I catch his eye, and he smiles and waves to me.  Then there are the moments he doesn’t know I’m looking: I catch him grimacing, mumbling a bit under his breath.  The self-talk.  He usually can keep it under control now, but it comes out in overwhelming situations.

Yep. He still has schizophrenia. I know it, of course, but sometimes I like to imagine it was all a nightmare that is now over.

In a way, though, some of that nightmare is over.  Thanks to some excellent life teachers, I have changed how I react to this situation, and that changes the situation itself. I have given up on being “right”.

Part of that change in my attitude was greatly influenced by the book I am Not Sick, I Don’t Need Help,, by Xavier Amador, Ph.D. If you're still stuck in the frustration of trying to convince your relative that he/she has a mental illness, I highly recommend you read it. It may save your relationship.

Two weeks after Yom Kippur, I get to spend two days with Dr. Amador and hear first-hand about his experience when his brother developed schizophrenia - and how, years later, they were able to be brothers again. The pain is all too familiar; thanks to info like this, though, my family has been able to have Ben back in our lives. Like Dr. Amador with his brother, I began to regain (and still retain) my relationship with my son when I let go of being right, or being somehow able to say the magic words that would “convince” Ben that he had a mental illness.

These two day are about paying it forward; we are learning how to apply the LEAP (Listen, Empathize, Agree, Partner) process in helping someone with mental illness, and about training others to apply it.  We’re a hand-picked group: two from NAMI Family-to-Family, some providers, and mainly police officers.  I’ve never had the chance to hear crisis stories from the law enforcement perspective, and am so in awe of these detectives, hostage negotiators, trainers, and crisis intervention specialists.

In the crisis years with Ben, I had to call the police several times.  Once, Ben called them to report that I had been threatening violence toward him (a long story, but unfortunately not an unusual one). Fun times indeed. Lucky for me, the police in my town had been trained in handling a crisis with humanity, respect and perspective.  It could have been so much worse. To them, and to the cops who took this training with me, I say a huge thank you. 

Families in crisis are so raw, vulnerable, confused, sad and often angry. Your patience and empathy helped us through.

With more understanding and action like this, we can work to reduce the stigma and chaos of mental illness.

PS – some exciting news coming soon about Ben Behind His Voices: One Family’s Journey through Schizophrenia to Hope. Stay tuned!

And you can write to me at randye@randyekaye.com if you want to receive the news via e-mail.

yes, things can get better

If you're stuck in the middle of the crisis/chaos stage of acceptance, you've no doubt got your hands full just trying to cope with immediate needs. Been there, don't want the t-shirt, hopefully not going back again - but, as you probably know, chaos is only a short trip away without medication compliance. Right now, as always, grateful for every good day.

Today Ben calls me to make sure I'm pleased with the job he did with household chores yesterday. "Did you see what a great job I did?", he asks. "Remember, Mom - if there's anything I missed, just tell me and I'll fix it. You know I'm good for it. I want you to be happy with my work." I say, "Wow, you're really conscienctious, honey." He says - and I can hear the smile in his voice - "Yeah, well, you know I like money."

He has his sense of humor back. And satisfaction guaranteed, to boot. How about that?

I sometimes pay Ben $20 when he visits on the weekend in exchange for a very specific list of chores I need done around the house. The more specific, the better: "Lift up the picture frames and dust underneath them. With Pledge. Only on wood surfaces." This clarity, I've discovered, leads to much more focus and better results.

Paying a 28-year-old child for dusting and vacuuming? Sure. He's on disability and though he wants a job, he isn't that realistic about landing one. He looks - with his job coach - in places that are a bit out of his reach, either geographically or in terms of work experience and history. Meanwhile, he has no money for, say, an occasional movie or a Quizno's sub. He hates to ask for money from me. He has his pride, and I'm glad of it. So I give him work to do, which I need done, and pay him for it. Win-win.

What surprises me, though, is how much he cares about the quality of his work, and how important it is for him to get the positive feedback from me. He really wants to earn this money. He hates handouts. That makes me proud.

It wasn't that long ago Ben was telling me that housekeeping was the result of a government plot designed to poison our minds against dust and germs. It was ten years ago that he ranted and raved about this so much, following me around the house while I was cleaning, that I almost threw the vacuum cleaner at him. And then he called the local police, claiming that his mother was getting violent. Fun times. This the basis of the chapter "Almost Arrested" in Ben Behind his Voices (my book, repped by cgerus@comcast.net).

Things can get better. Really.

Ben's Goals, and Rosalynn Carter rocks

Former first lady Rosalynn Carter has always made mental health part of her platform, and continues to educate.  Check out this video and her latest book, Within Our Reach.http://www.amazon.com/gp/mpd/permalink/m3Q34F82H33GZK

People with mental illness deserve respect.  Their courage is enormous, the obstacles often beyond comprehension for those who don't understand.  Ben earned another six college credits this semester, and is on the Dean's list.  Amazing! He's getting his life back in small steps.  Never, never compare his progress to someone else his age whose brain functions without illness.  There are other yardsticks to use.

When I cleaned out my son Ben’s apartment seven years ago, I found a little metal box.I peeked at its contents: more scraps of paper, obviously precious enough to be stored in this place of honor. I couldn’t bring myself to open these papers then. What crazy ideas would I find written on them?

At that time, I had just seen Ben admitted to the psychiatric hospital for the fifth time in six months. He was so desperately ill, his schizophrenia so in charge of his mind at that time. I’d seen enough; I’d heard enough. I threw the box in with the rest of his “desk supplies” and stored it away with the rest of the evidence of his disastrous attempt to live on his own that year.

Now, alone in Ben’s old bedroom in our home, I have found this metal box in a storage bin. I sit down on his old captain’s bed. I stare at it. It had originally held mints: “Organic Cinnamon Snaps! Over 100 snaps per box,” reads the cover. The hinges are covered in duct tape now; the picture of forests and volcanoes under the words has faded. Ben’s little treasure box, now seven years old.

I open it. Inside are pages ripped from a small spiral notebook, carefully folded to fit. I hesitate. I do – and I don’t - want to open these.

What will I find? What secrets has he kept in here? I hold the box in my hand, a key to the things my son considered sacred when he was 20 years old. On the inside lid is a quote, printed directly onto the metal, courtesy of the Cinnamon Snaps manufacturer. It says:

“The measure of mental health is the disposition to find good everywhere.”Ralph Waldo Emerson
I almost smile at the irony of this: Coincidence?

I take out the first paper and unfold it. I expect to see what I have found before in his writings from that period: grandiose ideas, poetic phrases, delusions that guide my son when his symptoms flare up.

But I’m wrong. It’s only a list of phone numbers, readable, organized. His friends, our family, his most recent employers. At the bottom of the list, the names of some old friends – from high school days – with no numbers listed.

People he hoped to get in touch with again, I think. I’d almost forgotten how many friends he used to have. So many friends. Would they even talk to him now?

I open the next paper. It’s another list, with “Stuff” written across the top, then: candles, lawn chair, blank tapes, phone card, origami paper. The list goes on; it’s a “want” list, or a shopping list. Things he’d like to have for his birthday, perhaps. The simplicity of these small desires touches me.

The next sheet is a to-do list. Again, the handwriting is legible and the columns organized. There are about seventy-five items on this list. Most are written in blue ink, a few in green, black or red. I stare at this for a long time.

Among the plans he’d made:

- Write letters (with a list of over twenty people, including me, Ali, other family, old friends, our rabbi, his old therapist – what had he wanted to say?)
- Write play
- Write animal language dictionary
- Make gifts: Mom pillow, Dream Catchers, Ali cookbook (for his sister)
- Compose college essay
- Build a drum
- Make chess set

More lists: movies he wanted to see, videos he wanted to rent, books he wanted to read, CDs he wanted to buy.

I’d almost forgotten that he used to have dreams. So many dreams, such simple ones. Any dreams at all. It’s not fair! He had all of these plans. Will he ever get to do them?

At the bottom of the pile is a last piece of folded paper. This one is messier, but I can still read what it says. It is full of quotes, ideas, and plans that are more internal. Written here are ideals Ben wants to live by, almost like New Year’s Resolutions:

- Listen a lot.
- Blow nothing up out of proportion.
- Simplify, don’t be hypersensitive.
- Don’t judge people.
- Don’t use your muscles, use your mind.
- Don’t use big words.
- Think before I speak or act.
- Don’t try to control others, let them be.
- Reach out to people, lovingly.
- Hear and consider others’ points of view
.…and the list continues.

I’d had no idea Ben was trying to change himself all the time I was desperately trying to change him.

Plans for his life - a life now at a standstill. A life worth living; a life worth saving; a life stolen from him. Will he – will we -ever get it back? My boy, my precious boy. I know you’re still in there. Come back to us. Come back to you.

I wipe my eyes, carefully refold the papers and put them back in the little metal box. I wish I could sleep with it under my pillow, like a lost baby tooth, and have my wishes – and Ben’s – come true.