Creative writing, then and now

Ben is taking two classes this semester: Directing 101 in the Theatre Department, and Creative Writing. The directing class requires a lot of him, things that his illness have compromised: insight into one's own emotions and the feelings of others, social awareness, stillness, complete connection. Do I tell the professor that Ben has this illness, so she is aware she needs to grade him in accordance with his disability?

And...creative writing. Ben's writing used to look like this:

- and that was before it began to look even more scattered and illegible. Now he is writing haikus, and keeping up with assignments. 200 pages of reading assigned between classes, I fear, may cause him too much stress; yet, it is his journey to complete. He is getting assignments in on time, so far - even, in one case, a day early. That requires a connection of cause and effect I haven't seen in years. Still, I want to make sure he gets a fair shake...do I write to the professor?

Meanwhile in this letter, from a Mom in England who has lost her son to schizophrenia, the story has unfortunately ended quite differently.
She writes this, in The Guardian:
"So the main reason I wanted to write was to say sorry. I did the best I could with you and for you at the time, but it wasn't good enough and I ultimately failed to protect you and keep you safe. I wish I could go back in time and do things differently."

Maybe with support, and without the stigma, her son's life could have been saved. Here is the link to the letter, which breaks my heart:

http://www.guardian.co.uk/lifeandstyle/2011/feb/05/letter-to-my-late-son-who-had-schizophrenia

Ben Behind His Voices this summer!

The cover design has been chosen at last, and it makes the upcoming publication finally seem real. The exact date of publication is still tbd, but it should be in bookstores in August 2011, and available for pre-order at the end of June or by July. There are more updates available by either joining the facebook group "Ben Behind His Voices, the book", or by joining my e-mail list using the link on the home page at https://randyekaye.com/ - just specify the "Ben" list when you get to your choices.

Here are some advance comments, though!

Poignant, stark, and the energy of the scenes are set up really well. This work has screenplay written all over it. The dialogue is wonderful and the pace of the story moves briskly.
– Nancy DeRosa, author of A Penny’s Worth, and There’s No Place Like Home

What I find most compelling about Ben Behind His Voices is the author's honesty as a mother about her true feelings. She connects with her readers because she allows herself to be human and vulnerable and share both her struggles and triumphs.
– Amy J. Barry is author of A Child’s Grief Journey and writes an award-winning parenting column, A Parent's Eye View.

Should be required reading for all psychology professionals and students, as well as anyone who loves or cares for someone suffering with schizophrenia. Incredibly well-written, profoundly honest and, perhaps, most importantly, Randye Kaye offers help and hope to thousands of families needing to hear her story. I sat holding my breath as I turned each page. The author is not only a survivor and an incredibly loving mother, she is - by any standards - a gifted writer.
– Linda Appleman Shapiro, psychotherapist/oral historian/author of Four Rooms Upstairs: A Psychotherapist's Journey Into and Beyond Her Mother's Mental Illness.

Jared Lee Loughner,tragedy, and ignoring the signs of illness

Every situation is different, I know. I cannot sit here and write about any magic formula to have prevented the tragic incident that happened in Arizona, where Jared Lee Loughner caused so much heartbreak in mere moments. But the fact that keeps bouncing around in my head is this, from a promo for Diane Rehm's NPR show of 1/11/11 (worth a listen, definitely): "The National Institute of Mental Health reports six percent of Americans over the age of eighteen have a serious psychiatric illness. A look at the challenges of identifying young adults with mental disorders and why so many don’t get treatment."

Maybe, just maybe --- if there had been more understanding, better education, earlier treatment, reduced stigma, more supportive services for Jared, more support for his family --- maybe those people in Arizona would be alive today. I can't say for sure. But I know that, without the treatment that my own son Ben finally is accepting, and without the family love that stayed with us throughout all the chaos of his schizophrenia diagnosis and treatment, he could be off somewhere doing something horribly newsworthy. He might have commited suicide. He could have frozen to death in an Montana cold snap, homeless. He could be locked in a nursing home for the rest of his life. He could have...I can't even think about this anymore.

Right now, Ben is safe, loved, living in a group home, and doing well in school. Maybe someday he'll have a job. For now - it's good. It's very good. We love him. We have him.

Ben's nature, fortunately, is sweet, and he has never been violent, even in psychosis. But that is no guarantee that he would make good choices. Oh. No.

My hope is that Ben Behind His Voices, when published this summer, may open a few more eyes to the needs of consumers, families, and providers and agencies who so desperately need education, support, finances, housing, understanding, respect, and integrated treatment.

Legislators, on state and federal levels: Come on! Don't vote to save a penny in "services" that could lead to the much higher costs - in every way - of another incident like the one that killed so many lives and dreams.

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!

Emergency Room again - but different this time

9 PM. The cell phone rings on my way home from teaching a class.

"Randye? It's Desmond from Harrison House."

Ben's group home. My heart skips a beat, a conditioned response. What has Ben done? Did he stop taking meds? But he's been doing so well!

Desmond senses my approaching panic. "Don't worry, it's nothing major. It's just that we're taking Ben to the Emergency Room. He cut his hand cleaning up the kitchen and he may need stiches."

It's ridiculous but true: I am relieved that Ben needs stitches. Oh, is that all? I think.I rush to the hospital to meet Ben and Desmond, and can see that this is manageable. The cut is deep but easily fixed with a few stitches. Ben has cut his hand between the thumb and forefinger while washing a chipped ceramic cup. Ben does not seem to be in a panic, either; he's just worried about the pain, same as when he was seven years old at vaccination time. This I can deal with.

Desmond goes back to Harrison House and I stay with Ben. At the admissions desk, the nurse asks, "What medications are you currently taking?""Prilosec," says Ben.

That's an over-the-counter fix for acid reflux. Easy. OK. Will he mention his real meds?, I wonder.

And he does. He says the brand names of the two meds that, combined, have kept him out of the hospital and in the world of real life for the past 5 years.

The nurse doesn't recognize the names of the meds, as they are the liquid and dissolvable forms of the more recognizable brands. "What are they for?" she asks.

I have no idea what Ben will say. But he answers. "They're for schizophrenia," he says.

A victory? I don't know. But I'll take it. This doesn't mean he accepts his illness; it just means he knows what the meds are for, in general. I don't press the issue. This is fine, just fine.

We're called into the medical area and Ben spots the treatment table where he is to wait.

"Wow," he says. "This is way better than the last time I was here. They used a straight jacket that time."

I cannot believe he just said that. He almost never talks about the times he was admitted to the hospital for psychiatric reasons. "Well, not exactly a straight jacket," I reply.

"Well, they used restraints or something. Anyway, this is way better," he says, and smiles.

"Yes, it certainly is." My thoughts exactly, but I hadn't dared mention it. The fact that Ben did - well, it's another small miracle. I allow myself a prayer that he may never have to be admitted as a psych patient again. I know I can't control that, but I can hope. And be glad that he's glad.

A few nerves, one shot of novacaine and a few stitches later, we are out of there. Just like any other, normal, mother and son.

Yes, this is much better.

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.

Right Words, Right Time, can offer Hope

I was the keynote speaker this week for the newly-renamed Child and Family Guidance Center, in Connecticut, celebrating 85 years of support and guidance in the area.

Speaking about the importance of early detection, and also of the lasting effect of the "right words at the right time" from providers who are aware of the effect of mental illness on the entire family, I saw a number of heads nodding in agreement. There are so many, still suffering in silence, embarrassed to talk about an medical illness that happens to affect the brain of someone they love.

One provider, a 25-year veteran social worker called "Helen" in my book Ben Behind his Voices: One Family's Journey from the Chaos of Schizophrenia to Hope (Rowman and Littlefield, coming Summer 2011) answered one of my questions with a sentence that has comforted and inspired me for years. I wonder if she knows how much I lived on that one sentence?

My son Ben had been living for almost five months on the state's "transitional living floor" after his fifth hospitalization that year. I'd had to make him homeless in order for him to qualify for a bed in a supervised living home. The wait for this bed was long and frustrating, and Helen had called me in to her office to brainstorm ways to help Ben get out of the limbo that is transitional living.

After an emotional meeting (Helen had been kind enough to ask me "so how are you and your daughter doing with all this?" - which few providers ask - and I had sobbed through my answer), I asked Helen, "How do you do this job? How do you deal with case after case of ill clients, sobbing relatives, and the paperwork of this system?"

I'll never forget Helen's answer. She handed me another tissue, looked at me with warmth and respect, and said "I'll tell you how I do it. And Why. It's because I love to see people get better."

People get better? I thought. That's possible? There's a chance for a better future here?

Helen was right,too. No, it's not perfect. Ben's life as I'd imagined it when he was a child is not in the cards right now. But - he's flying with us to Madison, Wisconsin for a family trip tomorrow. His self-talk is actually controlled enough to no longer frighten flight attendants. He has been - knock wood - stable for almost four years. He is in college, and handling a part-time load realistically and well.

Can it go away if he goes off meds for two days? Sure. But today - wow. His life is better than it was, so much better than I'd feared. Thank you, Helen, for giving me hope when it hardly seemed possible. I hope my book can do the same for others.

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.

Joey Pants and No Kidding Me Too

Among the celebs brave enough to "come out" re their mental illness: the wonderful Joey Pantoliano. Here he appears on STAR 99.9 Morning Show (where I used to work, now it's Tad and Marit - with Tommy Edison) talking about his documentary. http://star999.com/Player/100683761/

If you haven't seen the documentary, go here for info: www.nkm2.org

and, as always, www.nami.org

Been asked to speak on September 1st for Child Guidance Annual Meeting, also a NAMI chapter on the importance of family love in recovery - also on what the family needs: SEARCH (for Support, Education, Acceptance, Resilience, Communication Skills, and Humor/Hope). If any of use can help even one person...I remember feeling so alone before I found out I really wasn't (thank you, NAMI - now there's nkm2, also Bring Change 2 mind, and more). Yeah, the club you never really wanted to join, but dealing with mental illness in someone you love is difficult enough without feeling lonely and isolated on top of it. That's what I hope Ben Behind His Voices will do when published, as many of you who have read preview chapters have told me. Thanks for your courage in sharing your stories here in these comments as well.

Publication Progress, Ben Behind His Voices

so... we are getting the most complimentary letters from publishers who "wish they could publish" Ben Behind His Voices: One Family's Journey from Chaos to Hope. With one out of every four families affected by mental illness, isn't there a strong need for a story that provides hope, resources, and speaks to the power of love in recovery?

What do you think? some of these comments:

"It's very moving but a very tough sell."

"Thanks for thinking of me for this. I have a soft spot for stories of this kind and found the writing wonderful. "

"I would love to read more--in fact I'm ready to buy the book and can't wait until you find
a publisher...."

"Thanks so much for sending me BEN BEHIND HIS VOICES by Randye Kaye. How chilling it is to read of Ben’s struggle with schizophrenia—Randye expertly relates the horror that undoubtedly comes with a phone call from your son’s school informing you that he thinks he’s having a nervous breakdown. The strength and love in coping with this illness, especially between Ben and Ali, are both obvious and amazing.
While I did admire elements of this proposal, I’m sorry to say that in the end, I wasn’t confident I could break this project out on a large scale in a crowded market."

meanwhile, collecting some great quotes for the back cover!
“Ben Behind his Voices reminds us that schizophrenia is an illness, but not necessarily an identity. It movingly depicts the difficulty and the importance of recognizing, accepting, and managing the symptoms of this disorder.”

John H. Krystal, M.D.
Robert L. McNeil, Jr. Professor of Translational Research
Chair, Department of Psychiatry
Yale University School of Medicine

a preview of awesome DVD on effects on family: The National Alliance on Mental Illness: In Our Own Voice Family Companion

This is a preview of a DVD associated with a research project. The full DVD is meant to be presented in its entirety along with a program, part of a NAMI-CT collaboration with NIMH, the Mount Sinai School of Medicine and the Institute of Living. If anyone would like to see the video with a presentation, Ann Nelson is happy to arrange that for family members or providers. NAMI-CT at 203-927-1541 or familyresearch@namict.org.

Fragile, Precious Miracles

Now: In the mail, a letter from Ben's Community College. Out of old habit, I feel a tightening in my chest: Oh, no. What now? It takes a long time to erase long-reinforced reactions to bad news.

This? Good news - a form letter of the best kind. Ben has made the Dean's list for the third semester in a row!
"Dear Ben...You have now earned a place on the permanent roster of students with distinguished performance....we are proud of you and recognize that students like you contribute in special ways to the College."  An A in "Teaching Art to Children", a B in "Theatre Performance" from a professor who's a tough grader.

OK, the B in theatre was difficult to attain, for this reason: the professor did not know Ben had schizophrenia.  Good news/bad news/ difficult dilemma for me as Mom/conservator.  Although Ben's effort had been unfailingly positive-  all assignments in on time, all lines memorized, performance and teamwork reliable - this teacher likes to grade by comparing the students to professional acting standards.  Was focus consistent? Did the actor stay in the moment, listen well to other actors, etc?  He had met with Ben to tell him that his acting skills needed work - could have connected more with the other actors, etc.  He was going to give him a C+ or B-, although he was pleased with Ben's effort.

The dilemma - do I butt in?  After all, if Ben's disability is so well managed that it is no longer obvious to everyone (as it had been a few years ago when Ben was sent to the hospital after an episode of psychosis in the cafeteria), is it fair to expect complete focus and connection from someone whose illness affects those very qualities? Would it be fair to grade a physical education student on his running time if he was recovering from knee surgery, or if he had MS?

I end up calling the professor, just to "share the information", even though legally he cannot discuss the grade with me.  He tells me he "knew something was off" with Ben but had no idea it was schizophrenia.  Maybe that's why all the kids hugged Ben good bye when the play was over but no one volunteered to give him a ride to the cast party.  "Something is off." This breaks my heart for Ben's sake, as if he were a 5-year-old not invited to the birthday party.

Still...he makes friends at school, and loves it. He is choosing courses that he can handle, and he actually cares about getting assignments in on time, and about doing well.  He is so proud to be on the Dean's list, even as a part-time student. Eight years ago he was telling me that school was just a government plot against everyone and he was too smart to fall for that crap.  Five years ago he was choosing a course load that he could never have handled - honors philosophy, etc - and failed time and time again.  Now he is earning A's and B's.

Ben is especially proud of the B in theatre.  I think the info in my phone call helped the professor see things a bit differently, though I can't be sure about that.  I just know that, this time, I had to say something. Ben will never know I made the call.  He so totally earned that B.

Memoir, Ben Behind His Voices: One Family's Journey from Chaos to Hope, represented by Claire Gerus agency. For info contact cgerus@comcast.net

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.

Bring Change 2 Mind

Want a wonderful site to learn more about advocacy and acceptance? Check out http://www.bringchange2mind.org/.  Glenn Close, co-founder, will speak to neuroscientists in November.  Also, as always, check out NAMI for education, support, info - national at http://www.nami.org/ or your state affiliate.

Ben received an evaluation from his drama professor, who has no idea he has schizophrenia. Evaluated him against professional acting standards.  Effort? An A. Acting skills? B- or C+, maybe (and the acting skills grade in the one that he will probably get in the course).

My own inner voice is shouting "not fair!!!" Would a physical education professor penalize a runner with an arthritic knee for not being able to win the race?  Ben is devastated.  For him, memorizing and delivering his monologue, knowing and executing all his blocking and lines, being a reliable cast member - he thinks he did a wonderful job. So do I.  Every class attended, every assignment in on time -- is it fair to grade according to these exacting acting skills alone? Especially when Ben's scholarship depends on his grades?

If he hadn't tried, I'd leave it alone. But his commitment and hard work were never in question.

The dilemma: do I tell the professor about how hard Ben struggles sometimes just to follow a conversation, much less remain focused for an entire play?  Does he know what a miracle it was that Ben completed this?  Do I, as Ben's conservator, step in and give the professor this info? It soesn't seem fair that, now that Ben can "hide" his symptoms with the help of meds that also dull much of his energy, for him to be graded on a lack of physical energy on stage.

Dilemma. I so want to Bring Change 2 the Mind of that professor....

"Schizo!!!"

Last night, 7 PM. Place: our local community college. Event: theatre department's performance of Lanford Wilson's play, Book of Days. Ben has a nice size role in this, including a page-long monologue he worked hard to memorize.  Ben, who has been hospitalized seven times in his lifetime for various degrees of psychosis, has come far enough to be in this, his second play in one year.  He may major in theatre.  No future in it? I do not care. Ben is completing six credits each semester, and is not cracking under the pressure.  A miracle.

Few know how much of a miracle it really is. Certainly not the 20-something girl seated in front of us, head to head with her boyfriend.  They're looking at the program before the house lights dim for the start of the play.  "Ben Kaye," says the boyfriend. "I know him."  "Me, too." says the girl.  She rolls her eyes and adds, "more like - Ben schizo!", her tone a schoolgirl taunt.

I am shocked. I am shocked at how shocked I actually am. And hurt.  Here I sit, so proud of Ben, so thrilled to be attending this play that he has worked  to memorize and perform.  He is part of something, my child whose illness adds countless obstacles to socialization, to caring, to focus, to belonging somewhere.  And this - this ignorant girl. How dare she! I want to grab her by the wrist, take her out into the hall, and educate her as to how brave my son really is. I want to make her sit down and read about schizophrenia.  I want the stigma to stop.

I share my thoughts with my husband and daughter. Ali looks at this girl, my Cruella de Ville, and takes in her appearance: fishnet stockings, too-short skirt, heavy make-up, superior sneer. "Mom," she says, "all I can say is - consider the source."

Later I will see that Cruella will behave without manners throughout the play: whispering to her neighbors, texting, leaving and re-entering the theatre many times while the play is in progress. Sacrilige. Consider the source, indeed. I don't want to hate this girl, but I do. She has insulted my son.

After the curtain call (and Ben has performed really well, thank you very much), Cruella runs up to Ben and gives him a big hug. Hypocrite or friend? I don't know, I don't ask. But it softens my heart a bit toward her.  She can't help her own ignorance.  But I want to wipe this stigma away with the truth. I want Ben to have the respect he deserves. I want this for every brave person coping with mental illness.

Neuroscience Symposium at Yale

For a living, I make people laugh (radio broadcaster, VO talent, emcee, stage actress).  My hobby? Neuroscience.  It actually comes in quite handy, and not just in understanding my son's schizophrenia.

From the "Neuroscience 2010" symposium at Yale yesterday: Kay Jamison Redfield (An Unquiet Mind), award recipient, reminding us that love makes a huge difference in recovery. Re her late husband: "My rage was no match for his wit." How often it helps to keep a sense of humor, even in the middle of a loved one's crisis. Sometimes it's all you can do to locate your own sanity.

Big topic: early detection, possible prevention. According to John Krystal, MD, Chairman of Psychiatry at Yale School of Med, "brain changes associated with psychiatric illness can be prevented and reversed."  Another presenter warns us that "mental illness is like paraplegia of the brain - we can't change that it happened, but how we deal with it can make all the difference in quality of life." Hope, realism, acceptance - all echoed in one morning.

But, clearly, if full psychosis can be prevented by alert professionals and family members, the outlook is better.  More understanding, less judgment, more hope.  Keep funding research, please!

Ben Behind His Voices - further out of the shadows

Claire Gerus, my wonderful literary agent can be contacted at cgerus@comcast.net. The original titles of this memoir represent some of the changes we've gone through as a family since its original draft as To Hell and Half way Back, and first revision as No Casseroles for Schizophrenia: Family Lessons on the Journey to Acceptance. Present title: Ben Behind His Voices: One Family's Journey through Schizophrenia to a New Normal .

And, indeed, the "new normal" remains in progress - but there is happy news.  One of the reasons I wrote this book is to provide a vision of hope for families devastated by mental illness.  Many of the chapters spell out, all too realistically, the years of confusion and chaos, with sidebars of information I wish I'd had before Ben's diagnosis.  And we all know that recovery is hardly a straight, predictable road. But - recovery is possible, with a combination of realistic expectations and persistent watchfulness and hope.

Before the symptoms emerged in  mid-adolescence, one of Ben's most endearing qualities was his way with children - warm, insightful, loving. He was a sought-after babysitter and remarkable tutor.

We lost all that under the illness for many years.  If you have gone through this in your family, I don't have to explain this any further.  But - Ben is still there, indeed, behind his voices, and he is emerging from the shadows more and more, with each day he stays on his meds.  This week I got to observe him teaching an art project to pre-schoolers (a homework assignment for a college class he's taking). I saw, for the first time in years, reminders of the patience, creativity and understanding he used to have with kids.

It is possible.  It's not perfect, but it's possible.

always a wrinkle: the problem with State Budgets

The wide spectrum of developments when your child has a mental illness.

Plus side -wonderful weekend with Ben. Family game of Boggle as we hunkered down in the rainstorm. Ben beat us all, soundly.  His brain when balanced: amazing.

Minus side - Monday surprise: suddenly, the group home where Ben has been living for over five years has announced that Ben will have to leave soon; after all, they are "transitional housing".  No matter that the other residents have been there even longer than Ben.  Also, despite requests, his agency caseworkers have not moved at all in those five years toward getting him on a waiting list for another program.  So now everyone will have to move on this.

If Ben were to live here at home while in transition (not a good move anyway, as I am a much better mother when I am not a policeman/caseworker too), it would mess up his benefits (meager as they are).  This is what can happen when the State decides it has to make budget cuts that make absolutely no sense in the long run for those with mental illness who are STABLE.  At last. Weigh the cost of supervised housing/stability to homelessness/repeated hospital stays. Should be a preventive care no-brainer.

Grrr.

Good news for the memoir, though! some interest!
Ben Behind His Voices: One Family's Journey through Schizophrenia to a New 'Normal'

represented by Claire Gerus Agency

Ben's Poetry, age 21

Seven years ago, before Ben's first hospitalization, he took a poetry class at a local community college.  I look at his class assignments now and wonder how I could ever have doubted the seriousness of his illness. Where is the line drawn between creativity and complete inner chaos?

A sample:

GOD
My wind grows weary
Monotony is thick
The rivers ain't clear
As I am stained by this thick...mud puddle
Whilst I bear my own radiance
Sinned they be by a typical DEMONstration
Of a casual world spoiled by love
And a casual battle and death from above
Preaching false ideas
Made right for hatred is doubt
And through this calamity I can hardly reach out...to you.

This short poem makes some sense, though many others did not.  But - the "DEMON" in capital letters? His own radiance buried underneath thick mud?  To whom could he not reach out? To God? To me? But I was there all along, and at that time he refused my love. What was I to do?