Category Archives: excerpts from “Ben”

“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)Cornerstone Concept
  • 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.

socializationThe 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.

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Family Trip to Maine, as Schizophrenia Develops: Flashback, 2001

Dear Reader:

BBHV audiobookcover
earlier drafts…

The first draft of Ben Behind His Voices was a full 100 pages longer than the draft that eventually got published.  Once in a while, I plan to post some of the “lost” passages that wound up on the writer’s version of the cutting room floor.

This chapter describes a trip that I took with Ben and Ali, right after Ben returned from his period out West which began with great promise (and success at becoming pot-free), morphed into homelessness, and eventually got him back home  for treatment.  At this point in the story, we still didn’t know for sure what kind of mental illness Ben had. Even now, we are the observers of symptoms, always watchful for their return, always hopeful they will not, or that they can be explained away by something other than the illness.

 

 

Here is what happened:

“We took a weekend trip to Maine, just the three of us, right after Ben had finished his summer at the day camp. But Ben was acting very strangely again.

He had his backpack with him, always.  Forty pounds of spiral notebooks he just couldn’t leave behind – even if we were going to the beach, or walking near the sea cliffs.

He talked often, but not of ordinary things. His favorite topic that weekend was bragging to us about his “psychic powers.”  Often, he looked at me or Ali and said “I know exactly what you’re thinking. I can read your mind.”

The first few times, we played along.  He was never right, but would say that we were simply lying, that he must know more about what is in our minds than we did.

The three of us went to see a production of Joseph and the Amazing Technicolor Dreamcoat at the Ogunquit playhouse.  Ben, however, often seemed distracted.  We caught him “watching” the show with his eyes completely closed.  He looked as if he were trying to go into a trance. Continue reading Family Trip to Maine, as Schizophrenia Develops: Flashback, 2001

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Lost chapter: NAMI Family-to-Family, Experiment

Between the first draft of Ben Behind His Voices Family-to-Familyand the final one that went to publication, a few chapters (well, about 100 pages) were on the literary equivalent of  film’s “cutting room floor.”    Here is one of the “lost” segments, from a NAMI Family-to-Family class I was teaching at the time.


May of 2004

I’m teaching my fourth Family-to-Family series, and this group decides to try something different. They vote to invite the “ill relatives” we’ve been talking about for nine weeks to attend the class on Recovery and Rehabilitation, where a guest consumer speaks.  They want their relatives to hear the stories. This is unusual, but this class wants to do it; so tonight we are joined by about five of the people we’ve only heard about since February. Ben is one of them. It feels odd, their presence in the room – one of the most effective things about F2F is that, for once, the family members get to be open about themselves, honest about their own sorrows, frustrations, and hopes.  This is the one place where they don’t have to be conscious of how their words will sound to the person whose illness has caused all those emotions.

I, too, feel self-conscious with Ben in the room. Does he disagree with what I’m saying?  Will he rebel against the idea that I hope for a “recovery” from an illness he doesn’t yet accept? Will this help him, or set him back?

I watch our guests during the class. Most are young adults, but not all.  They listen to our speakers, ask some questions.  They offer some insights, and also some resistance. We are, in reality, not expecting to “convince” them, but we’re still hoping something may sink in sooner or later.  I know I am. You never know.

The best part of the evening comes, unexpectedly, during the break. While all the family members are inside the room, talking with the guest speakers around the snack table, our relatives have taken their snacks into the hall and are talking to each other.  They’re in a circle, and they are talking.  I don’t know what they say to each other, but I do know that my heart lifts at the sight.

They are not alone; they are not so different.  They need more of that comradeship. They need each other.  There are so few support groups for teens and young adults with mental illness, unless they’re in the hospital.  Perhaps, like all young adults, what they need most of all is a healthy peer group that can make them feel like a part of something, and can inspire them to take one more step in the right direction.

I plant seeds. I plant seeds of insight and I hope someday they will grow.

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Book Reviews from the Field: Psychologist, Psych Nurses

Thanks to Psych Central for adding Ben Behind His Voices to the excellent titles in their Mental Health Library. I’m proud to be listed here!

Readers who also happen to be healthcare providers (psychiatrists, nurses, psychologists, social workers, etc.) give extra hope that the messages in our story (greater empathy, the human face of mental illness, reduction of stigma, need for early detection, more integrated treatment options, new research, increased services, open communication and teamwork in recovery) will continue to branch out to others. Thank you!

From Nicholette Leanza, M.Ed, PCC-S – review on Psych Central

Ben Behind His Voices is an inspirational story about a family’s experience with schizophrenia… This book is a good resource for individuals with schizophrenia and their families. It also serves as a strong reminder to mental health professionals to treat individuals affected with the illness with dignity and compassion… Continue reading Book Reviews from the Field: Psychologist, Psych Nurses

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Art and Advocacy: When Worlds Intertwine

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

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

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

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

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

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Listen to a Scene: Ben Behind His Voices

One week before Ben’s first hospitalization in 2003, I stopped by his apartment because he wasn’t answering my calls. This is what I found, from the chapter “Not Sick Enough.” Ben’s silent treatment, and his living conditions, were almost grounds for the Emergency Room- but not quite. Not yet.

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No Casseroles for Schizophrenia: Where truth, support, and hope began: NAMI’s Family-to-Family Course

Where truth, support, and hope began: NAMI’s Family-to-Family Course

Now: Ben made the Dean’s List again! The letter from our local community college confirms his status and adds, “It is a a very worthwhile accomplishment to have become one of our best students.” For the first time in over a decade, Ben actually cares about his grades;  there was a time he considered report cards a government plot to control him.  Ten years ago, he was a high school dropout, refusing to discuss his future plans, wandering through our town streets because he “didn’t like the stupid rules at home.”  Sometimes, then, he slept in the park.  My son, homeless and hopeless. His family: confused, devastated, always at our wits’ end. 

Recovery takes time – and a lot more. So as we take this journey, I continue to teach (and train others to teach) a course for NAMI (National Alliance on Mental Illness) called Family-to-Family.  This program – one of many offered by NAMI -saved our family by teaching me about mental illness and giving me the skills to deal with our new reality.

It was there that I learned the devastating truth that was necessary for the start of recovery: Ben truly did have a serious, and severe, mental illness. He was not “stubborn”, or “going through a tough adolesence” – he was ill, and it wasn’t his fault.  What did that mean for us? For him? By opening my eyes to the facts, this course opened my mind to solutions.

I am forever grateful to Dr. Joyce Burland, who created the 12-week class, and to everyone at NAMI who continue to help bring it to families like ours.  For free. Still, so many families don’t even know what it is.  I urge you to find out.  Visit http://www.nami.org/ and find a wealth of free information, and a link to your local affiliate.  Click on “education” and there you are.

Find NAMI. It’s something you can do for yourself – -RK

Excerpt from Ask about Ben Behind His Voices: One Family’s Journey through Schizophrenia to a New Normal. December2003 (for info on publication, contact Claire Gerus, cgerus@comcast.net, literary representation)

In my years in NAMI, I’ve met some unforgettable people. While Family-to-Family is strictly for relatives of people with mental illnesses, the support groups also include the “consumers” (the current term for the ones who have been diagnosed with the illness) themselves, those who are struggling with their own recovery and ready to accept and talk about it. There are support groups strictly for consumers too, but it’s amazing to sit in a room where consumers and family members share their experiences with each other.

I’ve met people with such courage, such insight, such humor along with so many losses. I’m constantly awed by their stories, with the things they’ve lived through and the actions they’ve taken. With heart. With determination. With unending, powerful love.

I’ve met families with riches and families on welfare. Families of many colors, religions, levels of education. I’ve met adult children who grew up having to chase their mother down the street while she was in a manic phase; wives who had to play Santa Claus when their ill husbands were suddenly hospitalized on Christmas Eve; brothers who have lost the sibling who once taught them to ride a bike; sisters who get twenty confused phone calls a day from the big sister who used to help them with their homework and is now living on the street but refusing help.

I’ve met people who spent their life savings, mortgaged their homes, drained their retirement accounts in order to try a new treatment for their relative, or afford a few months in a private facility that either seemed promising or was simply the only alternative for post-hospital care. I’ve met parents whose children were missing for weeks, sometimes years; husbands who had to chase down their wives, around the world or across the country, after a disappearance sparked by mania. I’ve met people who have lost their loved ones to suicide.

Many of the families I meet have other children – healthy children, “normal” children. Luckier children. Mental illness, contrary to embarrassingly recent thought, is not the fault of the parent. It is a biological illness of the brain. That fact – that proven, medical fact – is a major hurdle for many family members to accept, for it means two contrasting things: one – that you didn’t do anything wrong. The illness is not your fault; two – that your relative really, truly is ill. You cannot “fix” this any more than you could “cause” it. You have so much less control than you wish you had.

With that said, though, families find that there is still much that they can do to help. There is empathy, understanding, advocacy. There are limits to set, programs to learn about, ideas to set in motion. That help may or may not be accepted by your loved one, but in the meantime, you can – you must -help yourself. There is grief – so much grief, so much loss. But there is also hope. You must live your life in between the storms.

3 comments:

glory said…
Randye, your blog is wonderful. It’ll be a lifeline to families challenged by schizophrenia. 

February 22, 2010 8:32 AM

Randye Kaye said…

thank you! that is the hope – 

February 22, 2010 3:01 PM

Logicmaven said…

Trying to understand it all. 

Things were looking up. My boy seemed to be doing much better — much clearer, much more in focus. I started to wonder if it was all in MY head; after all, he hasn’t had a formal diagnosis in almost ten years. It seemed like things were moving toward “normal.” We spent some wonderful days together laughing, visiting the MoMA, remembering how alike we are and forgetting how different. I tried to gently push him toward mental health care — he refused.

Then he took off again. He’s back in the city, “staying with friends.” He calls me at night to tell me he’s cold, to complain about not being able to get seen at the methadone clinic, to tell me he’s hungry but he’s not coming home.

I don’t know how I would survive without the support of friends.

Thanks, Randye, for being there. Thanks for telling me about NAMI. Your words help so much.

March 2, 2010 11:19 AM

No Casseroles for Schizophrenia: Where truth, support, and hope began: NAMI’s Family-to-Family Course

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Now and Then: Psychic Vampires on the Phone

When your child calls you, do you experience a moment of panic before you pick up? Even though your love knows no bounds? If your child has ever called you for help – the car won’t start, he is lost, her boyfriend broke up with her – you know the feeling.  If your child has a mental illness, you come to expect it – sometimes even when things are going well. Your comments are welcome.

Now. A text from Ben. It almost always reads, “call me when you get this please” – and I become aware of an involuntary tightening in my chest.  Will that knee-jerk reaction ever go away? These days, he often has good news to share: a theatre class he enjoyed, a good AA or NA group. But years and years of crisis calls leave their mark. Even in the recent years of recovery, there have been close calls, where only quick action had prevented a new hospitalization.

In the confusing years before the diagnosis – even before the calls began to come in from the police, my neighbors, or hospital Emergency Rooms – there were phone conversations with Ben like this one:

Then, 2001: (Excerpt from No Casseroles for Schizophrenia: Family Lessons on the Journey to Acceptance and Hope, previous draft of Ben Behind his Voices)
https://randyekaye.com/

Now it was March, and he was on the phone again, long distance (and collect) from Idaho. “Hi, Mom. How are you?” Ben had been calling me occasionally ever since he’d been kicked out of Waterfalls at the end of October. Sometimes he called every day; sometimes a few weeks went by before I heard from him. Recently we’d been speaking every few days. I never knew what to expect, what he would say.

“I’m fine honey. How are you?”

“I’m great, Mom.”

“That’s good.” Silence. Where do go from here?

“Mom?”

“Yes?”

”Do you know what a psychic vampire is?”

I stand very still and close my eyes to make this go away, like a child who doesn’t want to see the milk she spilled. “A what?”

“A psychic vampire. ‘Cause they have them here.”

This was something I hadn’t heard from him before. What is he talking about? Then: What kind of drugs is he on? Then: Stay calm. “No, Ben. What is a psychic vampire?”

His voice took on that tone of superiority, and yet there was panic in it too.“They steal all your energy. It’s really scary. And there are psychic vampires here, I swear.”

I had no idea what to say to that. I think I assured him that you could prevent these vampires from stealing your energy if you wanted to. If he was on some drug, he probably wouldn’t remember this conversation anyway. But I certainly would. I added this conversation to the list of behaviors that were becoming weirder, and more frequent.

At first, after Ben left the program, he had called to ask for money, or to tell me which friend’s couch he was sleeping on. He reported looking for work, getting jobs, losing jobs within days. He called to tell me he loved me. He called to tell me that he was hungry and it was all my fault. Then, the weird calls had begun:

“Mom, I’m doing great! I spent all afternoon yesterday, walking by the side of the highway, and screaming. I feel so much better now. It’s good to get your feelings out.”

“I’m good, Mom, but I spent the night sitting on the roof and looking at the stars. They are awesome! Oh, and I sang to myself all night. It helps me concentrate.”

“Steve kicked me out, Mom. His Dad said I couldn’t live there since I l owe him so much money. But I think there’s a homeless shelter that will take me in. Then I’ll get a job while I’m living there and save some money and come home.”

And now, psychic vampires. What are the drugs doing to his brain? I was back to thinking that this was just a problem of substance abuse, that Ben had to learn from natural consequences. To do that, he’d have to hit bottom. Good and hard.

And yet, another thought kept growing: the theory that Ben might, after all, be truly ill. What if he hits bottom and is so impaired he doesn’t even know it? What if Ben had some kind of mental illness? So many people had talked me out of that idea in the past. “No, I’m sure he just needs therapy. Sobriety. Structure, discipline. To get closure with his father.” On and on went the theories, on and on went my hopes that this was anything but a real mental illness. Please let it not be true.

If only I could have willed it to be true, loved his symptoms away, I would have. But evidence had continued to pile up, even though I wanted to believe anyone who told be it didn’t, couldn’t, add up to something as serious as mental illness.

(for more information on this book and presentation, please visit https://randyekaye.com/)

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Why the title "Ben Behind His Voices""? Excerpt from Introduction

why? because Ben is still in there, struggling to connect through the chaos of senses gone haywire, or sometimes dulled by the meds that keep him out of the hospital, in his brain.

Introduction – 2010

My son Ben knows the lyrics to every song I’ve never really noticed on the radio. He’s the one who teaches to me to appreciate the poetry in songs by Led Zeppelin, Pink Floyd, and Eminem. He’s my favorite companion for performances of Shakespeare in the Park, because just at the point when I’m starting to think why don’t they just speak English already?, he invariably whispers something like, “Wasn’t Shakespeare a genius, Mom? Listen to the music in the way he wrote those lines.” Shame on me.

Ben loves nature, children, fantasy video games, helping others, the Indianapolis Colts, Thanksgiving with the family, and vegetarian Thai food. He made the Dean’s List at college last semester. He kills at Scrabble. He has offered to counsel my best friend’s nephew, who is still lost in the world of drug addiction.

Ben is 27 years old. And – oh, yes – he has paranoid schizophrenia.

Ben is not “supposed to” care about others – that’s one of the symptoms of schizophrenia. But he does. He is full of love, and we’re grateful for his presence. Our family has learned to live in the moment; there are, thankfully, many moments to treasure these days. But it wasn’t always like this, and we know, all too well, that tomorrow could bring more change. Still, we have found hope and love that we once thought might be lost forever.

When Ben was hospitalized five times in 2003 – the height of his crisis period – for symptoms of this illness, no one in my life really knew how to react. No one showed up with casseroles at our door– especially not by the third or fourth hospitalization. People don’t really know what to do, how to support the patient and the family. Unlike a physical illness like a broken leg, there’s no timetable for recovery from something like schizophrenia. There’s no sure moment of getting better. There is no cure; there is only management. As is also true with cancer, there’s always a chance for recurrence after remission. But unlike most cancers, the patient’s very soul seems to be affected by mental illness. The organ it affects is the brain, and that’s the window to our personality, perhaps to our soul. People are frightened of mental illness; they’re uncomfortable visiting someone on the psych floor. The family feels isolated, stigmatized, and often very alone. But there is hope. Ben is in recovery. He is not “cured”, but he can be kept in careful balance. He is part of our family. He is worth knowing. He deserves to be understood and accepted, just like anyone with a more visible disabilty.

Every morning and evening, Ben takes medication to keep his brain in balance. He doesn’t agree that these meds do anything to help him, even though if he stops taking them he winds up back in the hospital within days. All he knows is that they make him feel mentally cloudy and physically exhausted. Ben tells me that he feels like a blanket has been thrown over his mind when he’s on his medication; he loves the initial feeling of clarity and energy that comes if he stops taking it. I know that this euphoria lasts only a day or so, but by the time Ben’s brain has raced past that first phase, he’s too symptomatic to realize that anything’s wrong. He generally just thinks that “people are treating him differently” for some reason. Sure we are. When Ben shifts focus to his inner world, and we try like hell to bring him back to us.

Without the medication that restores the chemical balance in Ben’s brain, he has to fight to remain connected to what’s happening around him instead of within him – and the strain of that effort is heartbreakingly apparent. Ben wants, with all his heart, to prove that he doesn’t need the medication that we know has brought him back to us – at least halfway back.

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new excerpt: from Part One: Before the Illness

My Baby Boy

April 30, 1982

It’s hard for me not to see Ben’s life in two parts: before the illness – when everything seemed manageable with normal parenting skills – and afterwards, when all hell broke loose. Hopefully, now, he’s in a third phase: recovery. I remain so grateful that Ben’s doing well. But I am still, on occasion, haunted by the child he was, the child we lost. That child is still inside of Ben, peeking through the cloudy veil of schizophrenia and the medications that keep it under control. Like all parents, I miss the baby I once had. But I also mourn the man he might have become, if not for the illness that got in his way.

My baby. Benjamin was born on April 30th, 1982, nine days late, after a natural labor and delivery. No drugs. See, even now I remind myself, this is not my fault. I ‘d done everything right during the pregnancy, I swear – unless you count the Pepto-Bismol during the first week of what I’d thought was a stomach virus but turned out to be morning sickness. I’d even gotten my husband, William, to change the cat litter.

Although – maybe I had chosen the wrong man to marry. Maybe his genes were somehow flawed and I should have been able to see the signs. I’ll never know the answer to that, but it’s the question I am asked most often: “Does schizophrenia run in the family?” I’m not even sure why it matters, except that the questioner wants some kind of assurance that it can’t happen to their child. …….

….(So) before William and I marked our first anniversary, we celebrated the birth of our gorgeous baby boy. There were no wails of outrage as this child was brought into the light from my womb; there was only a deep breath of life followed by fascination. His face was perfect, and somehow wise. He was beautiful, so beautiful. From his very first moment in the world outside my womb Benjamin was alert and assessing the environment through those intent brown eyes that later would so resemble my own. In the hospital room, I stared at this new life, living the first page of his history, and imagined what else would be written there.

I promised my sleeping little baby that I would always do my best, always stick by him.

Little did I know how fully, and for how long, those intentions would be tested. Never once, with no history of it in my family, did I expect a mental illness would steal his life from him later on. You imagine cuts and scrapes, broken arms, broken hearts, even car accidents or kidnapping – but never schizophrenia.
———————

SIDEBAR:
Is schizophrenia inherited?


Like many other medical illnesses such as cancer or diabetes, schizophrenia seems to be caused by a combination of problems including genetic vulnerability and environmental factors that occur during a person’s development. Recent research has identified certain genes that appear to increase risk for schizophrenia. Like cancer and diabetes, the genes only increase the chances of becoming ill; they alone do not cause the illness.

_____________

To learn more about this manuscript, contact randye@randyekaye.com

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