Ben Behind His Voices

New Home for Ben Behind His Voices

2011-10-02T21:21:00.000-04:00

News! This is the former site of the blog for "Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope" Please go to its new address, http://benbehindhisvoices.com/blog, where you can follow, subscribe, and see reviews, news and events! Hope to see you there!

Library of Clean Reads: Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope by Randye Kaye

2011-08-27T17:07:00.000-04:00

Library of Clean Reads: Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope by Randye Kaye

Ben Behind His Voices, blog: New Address reminder!

2011-07-19T10:41:00.001-04:00

Hi my dear followers -
Just reminding you that my most recent posts can be found at the new site for this blog, Ben Behind His Voices blog. I hope you will follow there for updates, excerpts, news, and to join the conversation about issues and emotions when mental illness strikes the family.

Happy to tell you that Ben Behind His Voices is receiving some great advance reviews! You can preorder, and also peek inside, on Amazon here: Ben Behind His Voices on Amazon

There is also a facebook page and group (all "likes" most welcome!)- and the book's website. So once again thanks for following here and I hope you will continue to follow, read, share, and tell your friends.

Thanks you - see you at the new address!

Ben Behind His Voices Blog: New Address to Continue the Conversation

2011-06-16T09:10:00.001-04:00

Thanks so much for following and commenting on this blog, whether you've been here from the start or have just discovered it. Early this month (June 2011) the site content was moved to a new URL, easier to find as part of the new website for Ben Behind His Voices.

http://www.benbehindhisvoices.com/blog

My publisher suggested this would be an easier address for people to find the blog, and the book info, when they search. I'll keep this site active for a few more weeks, and then will remove the content as it has been republished at the new address.

Please check this new site for the latest posts, and I hope you'll subscribe/follow there to stay in touch - and, as always, spread the word to anyone who might want to be part of this growing community. Thanks so much!
And, of course, I continue to blog about the issues that affect families dealing with mental illness at healthyplace.com, a terrific resource for many topics in physucal and mental health. I invite you to check out their site for blogs, info, interviews and other content. HealthyPlace.com. My blog there is called "Mental Illness in the Family"

Schizophrenia and Family: Walking the Tightrope of Recovery

2011-06-03T11:38:00.001-04:00

Recovery in mental illness is possible, yes - but is often a tightrope walk for all involved: consumers, family, friends, providers. To paraphrase Willy Loman in Death of a Salesman, "Respect must be paid."

This is an excerpt from today's radio interview with Ray Andrewsen of WQUN AM in Hamden, CT, where he asks me about our family experience as schizophrenia developed in my son Ben.

Next Thursday, June 9, I'm honored to be the keynote speaker for Fellowship Place in New Haven, CT, one of many organizations providing much-needed support and community for those with mental illness. .

Eighth Annual Doctor Albert J. Solnit Memorial Lecture
Advance ticket purchase is required. Tickets are $25.00 each. To purchase tickets, please click on the link on the left or call Melissa Holroyd at 203-401-4227 x111. All proceeds to benefit housing and support services to adults who suffer from chronic mental illness.

more info: Hope to see you there if you can make it!

Fellowship Place to host our 8th Annual Dr. Albert J. Solnit Memorial Lecture: a discussion with Author Randye Kaye, Thursday June 9, 2011 at 7:00pm, at the Whitney Humanities Center Auditorium of Yale University, 53 Wall Street, New Haven.
Join us for a conversation with Randye Kaye, based on her book "Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope", to be published by Rowman and Littlefield in September 2011. Kaye will share with the audience her experiences with her son who suffers from schizophrenia, how mental Illness affects the whole family and how they helped guide him on his recovery journey as he went from 7 hospitalizations to now 4 semesters on the Deans List at his school.
Kaye humanizes the experience of schizophrenia by including Ben’s point of view, through his poetry and other writings, and pays tribute to the courage of anyone who suffers with mental illness
Following the Author’s presentation, Fellowship will host a panel discussion with the audience and a coffee reception. The Panel will include:

Daniel M. Koenigsberg, MD, Former Chairman, Dept. of Psychiatry, Hospital of St. Raphael, Associate Clinical Professor, Yale Medical School
Selby Jacobs MD, MPH, Former Medical Director, CT Mental Health Center, Professor of Psychiatry, Yale Medical School
Allan Atherton: Treasurer, National Alliance on Mental Illness (NAMI) of Elm City, Past President NAMI/CT, Co-Coordinator, NAMI CT Sharing Hope Initiative
Randye Kaye, Author: ”Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope", NAMI Family-to-Family educator, Radio broadcaster: NPR.

Independent Living and Mental Illness: How Much, How Soon?

2011-06-01T09:02:00.001-04:00

When a hug could fix everything...

I've spent a good part of this afternoon yelling at the people who are supposed to be supporting my son as he completes his first two weeks in "supported independent living." This was determined to be the next logical step after doing so well in his group home - that's what they told me, anyway.

Yeah. sure. Where is the support? In these two weeks, he has become isolated when not at work, has clearly (to us) somehow cheecked his meds twice, and has "forgotten" to show up for morning meds once. He also missed an appointment with his caseworker. This, too, he "forgot" - and they caseworker let it slide. After the initial move-in rush, Ben has not finished unpacking. I'll bet there are roaches crawling over unwashed dishes in his sink. I hope not, but let's just say I have concerns.

Why? Well, it could be the stress of too much change too soon. After seven years in Harrison House - where he had 24/7 staffing, 7 housemates, required chores and meetings, and someone to be accountable to - Ben now is expected to live alone, and "take responsibility." Except for showing up twice a day to take meds, he is left to his own schedule, his own decisions, his own life. Ben has lost his community, his sense of purpose, his structure and his parental figures. All without gradual steps. It's like they threw him down a flight of stairs and said good luck.
And, oh sure, we'll take you to the hospital if you break a leg. But we won't bother cushioning your fall or providing a handrail.

Add to that the fact that Ben's school semester ended during this time, he no longer has required meetings to go to, and he has no one to play cards with, say good morning to, watch Iron Chef with. Yeah, he said he hated Harrison House and couldn't wait to get out - but even the things he did to get away from there (extra NA or AA meetings, community Clubhouse, nights spent with his family) were good for him. If not for his job, he'd he alone all the time. And that is not good for anyone.

On June 9th, I'll be the keynote speaker at Fellowship Place in New Haven CT, where they provide community to those like Ben who so desperately need it - and cannot get it elsewhere. I wish Ben lived near their program. If he would go. Things we're required to do sometimes help us the most.

Several calls to the office later, I have spoken to every possible staff member about Ben's tricks for not keeping his meds in his system. If they have to tattoo it on his arm, I don't care. Watch him taking the meds - every second - and make sure he sits afterward according to doctor's orders. No bathroom, no cigarette breaks. Come on! How hard is that? Why doesn't every per diem staff member have access to that info?
But - more than that - where is the plan they promised to make this transition easier? When I asked his caseworker, I got this response: "Well, we do a plan after 30 days, after we get to know him."

Really? When and how do you plan to know him? Do you know how a kid can fall through the cracks in 30 days? How will you know if he's isolating himself?

Will it be too late when you finally notice him?

Quote from the Fellowship Place website: "It is possible to overcome the effects of severe mental illness and move from homelessness, poverty, and despair to a life of hope and self-sufficiency"

Yes- with love, a good plan, a sense of purpose, and the right meds. What if I were not there to step in? What about the people whose families have given up?

Schizophrenia Recreated in a Computer

2011-05-27T15:15:00.000-04:00

How does schizophrenia develop in the brain? What happens? Dr. Ralph Hoffman creates "hyperlearning" in computers, which then recalled stories as a schizophrenic patient might.

Hear the interview here.

"Reporting in the journal Biological Psychiatry, researchers write of modeling schizophrenia in a computerized simulation of the brain's connections, called a "neural network." Yale psychiatrist Dr. Ralph Hoffman, an author on the paper, discusses what his team has learned from the model."

Why? To learn. If we'd never gone into apce we'd never have the global networks we enjoy now. To my mind - and for the 1 in every 100 people who are diagnosed with schizophrenia - the more we learn, the better.
Research is vital to understanding - and to eventually finding a cure. We'll get every dollar spent on research back tenfold if those with mental illness can truly recover.

Schizophrenia Awareness Day: May 24, 2011

2011-05-24T12:23:00.001-04:00

Schizophrenia Awareness Association

The Schizophrenia Awareness Assocation (SAA) in India has declared this day Schizophrenia Awareness Day. Schizophrenia affects one percent of the world's population. Not just in the United States; this is an international statistic. The Times of India has a wonderful article today, talking about recovery and the need for family and social support. Oh yes. Indeed. One quote:

"Integration of schizophrenics into the mainstream society and spreading awareness on the mental condition is important for normalcy to return. Isolation should be avoided at all costs."

Community Matters

Oh, how true this is - and how tested it has become here in our family this week. Ben has, in the space of one month, continued at his new job (his first job in eight years), finished his six credits in college (final papers and projects), and moved into his own apartment. That's a lot of change, and a lot of stress. So far, so good - almost.

Families who remain involved in their loved ones' recovery know this: let go as much as you can, and keep your eyes open for signs of relapse. This is, always, the delicate balance.
So - when Ben moved from a group home (with eight housemates and 24-hour staff support) to a supported studio apartment (with med supervision a four-block walk away, and no community handy) this month, I had my concerns. Oh, yes. I do want him to take (and enjoy) responsibility, but as always medication compliance is the foundation upon which this success rests - and, of course, the emotional and social parts of his treatment plan.

Families know the signs of potential relapse, believe me. In Ben's case, one day cheeking the meds shows up in his personality: he gets too energetic, tries too hard to engage. His voice goes up in pitch. I saw this happen this week, so I went in to action: called his new caseworker, visited the weekend staff at the office, and reminded them all: Watch him. He doesn't want to need you, but he does. Make sure he takes the meds, and that they stay in his system. Oh, the tricks he can play.

Today he is back to normal. Mission accomplished - for now. That was a reminder I'd hoped to never see again: that Ben needs the medication to continue to on this amazing path in recovery. And, he needs his community: family, friend, providers. He may never agree that this is so, but for now I will be the watchdog. Thank goodness he has caseworkers who will take me seriously.

This is a team effort.
More from the article in Times of India:

On bringing the patient back into mainstream society

* Proper medication, family support, therapy and rehabilitation is important

* Psychotherapy, cognitive behaviour therapy, group therapy and family therapy are required

* Rehabilitation through workshops at support group meetings and at rehabilitation centres is necessary

No matter where you live - this is true. Together we can help each other.

What's it Like?: 20 Greatest Memoirs in Mental Illness

2011-05-19T11:31:00.000-04:00

Another great resource, especially if you're looking to contribute your experience professionally, and want to get your Masters' Degree online : Masters in Health Care . This latest blog post also lists the 20 Greatest Memoirs in Mental Illness. Whether you have been diagnosed yourself, are providing services professionally, or as a family member (lots of work, no salary!), getting the insiders' view is invaluable.

If this were my list, I'd add the following memoirs:

Henry's Demons
The Day the Voices Stopped
His Bright Light
Crazy
Beautiful Boy

Someday I hope Ben Behind His Voices will make this list. When it does, I'll know that its message of hope and its dose of reality will have reached more readers - and that the message will spread. Guess it's a bit much to expect to be on here, since the publication date is still a few months away! Want a peek? Amazon has it for you.

Parenting with Challenges: Sense of Humor Required?

2011-05-17T11:03:00.001-04:00


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.

Supported Housing: One Giant Leap for Ben

2011-05-10T13:43:00.001-04:00

I'd always been under the impression that when Ben was ready to leave his group home, he'd be gradually weaned off the 24-hour staffing to, perhaps, 16 or 12 hours of supervision. But no. Ben's recent accomplishments, notably lasting six whole weeks at his new job, have forced the issue of getting him "graduated" from supervised housing to the next step. Evidently, there is no middle ground in our state. The next step is living alone. Yes, he qualifies for a med nurse to show up twice a day and carry out doctor's orders for supervision of meds. Yes, there is help "if he needs it" in the office a few blocks away. But still. While I share and applaud Ben's accomplishments to qualify for this next step, I am also as concerned about this change as I am happy for him.

Tomorrow, he moves. First and last month's rent? He only has part of it. Most of his benefits were withdrawn almost as soon as he received that first paycheck. So guess who has to make up the difference? What do people do who don't have parents to help them?

Furniture? He needs a bed, a table and chairs, the basics of life. So much need, so soon, with nothing in the bank to pay for it now. What if he had no family? What do others do? I think we'll be making daily visits to Goodwill for awhile. Our family has unlimited love to give, but definitely not unlimited funds. Far from it.

Ah, the thrill of the challenge. But finding furniture, and stocking Ben's fridge, will be the easier part. How do I stay away from the fear: What if it's too much for him? What if, after seven careful years of building his life back up, this is too much independence, too soon?

What if Ben crashes? I try not to think this way, but it sneaks into my head when I'm not looking.

After seven years with the safety of all-day staffing, Ben will be on his own in so many ways. He is thrilled beyond belief. I am happy for him. I am, also, scared. I want to believe that his recent accomplishments - doing so well in part-time college classes, landing and keeping this new job, racking up years now of sobriety - are proof that he is really growing up at last, chipping away at the years he lost when his illness was in the forefront. I will behave as if I have complete faith in his ability to thrive in this new phase. And maybe - just maybe - it will all work out wonderfully.

Ben has certainly earned this chance to prove himself. There is little I can do now except be happy for him, support his independence, and - between you and me - keep my eyes wide open for signs of relapse, and my arms and heart wide open to love and congratulate him.

Thoughts?

"Hope, Respect and Dignity" : One CT Doctor Writes about Mental Illness

2011-05-03T09:54:00.001-04:00

Bridge House, CT

In a recent article in the Stamford Times, Dr. Michael Basso writes about the need for those non-medical elements in treatment for mental illness. Things like Hope. Respect. Dignity. And, yes, even Humor.

He spoke at a mental health day center, where many in the group were homeless. He found that the above elements created an interactive, respectful, fun session. Here's what he had to say about humor:

"I cracked as many jokes as I could before and during the talk and got the patients engaged in having fun. They were also encouraged to make relevant jokes -- perhaps the most important innovation of all. The laughter put them further at ease and the jokes engaged them in ways that helped return control back to them -- called having an internal locus of control"

Lionel Ketchian, Happiness Club

This reminds me of the Happiness Club, which began in Connecticut but now has spread internationally. Lionel Ketchian, its founder, runs a meeting at Bridge House ("a Clubhouse which is modeled on the Fountain House model of psychiatric rehabilitation. The men and women who attend assist with the running of the program, which helps to restore their sense of purpose, dignity and self worth. Members also work at part time jobs, with staff providing intensive supports")

Lionel says he always gets much more than he gives.

I've had the privilege of participating in one of the Bridge House Happiness Club meetings. Truly amazing.

Hope. Respect. Dignity. Humor. Yes, please

Glee and the missing mental illness: schizophrenia

2011-04-28T11:04:00.000-04:00

Dear Glee writers: I truly applaud your script this week, where Ms. Pillsbury finally comes to terms with her OCD. Dr. Stephanie Smith blogs beautifully about this here.

I loved the way Glee handled OCD in this episode- the stigma, the symptoms and the road to treatment. My only bone to pick: the psychiatrist played by Kathleen Quinlan - I'm assuming her vocation, as she was able to prescribe the SSRIs for Emma - spoke beautifully about acceptance in mental illness, mentioning every diagnosis except for schizophrenia. That, too, deserves an open forum. Come on, at least give it a mention!

Still, it's a start. Thanks, Glee. Someday maybe my Ben will may be proudly open about his illness. Maybe. But in the meantime, I'll remain thrilled that he is agreeing to treatment. So far, so good.

May is Mental Health Month! Here's a great resource for info at Mental Health America.

Bipolar Disorder on the Cover of People Magazine?

2011-04-27T18:33:00.000-04:00

Well, Okay. So it's actually a gorgeous picture of Catherine Zeta-Jones. Still, it brings one more mental illness into the light, with a matter-of-fact movie star who says it shouldn't be a big deal. I wrote my first-ever letter to the editor after reading this week's issue, which also contained a similar admission from Disney darling Demi Lovato.

In case it doesn't make it to print (hey, I tried), this is what I wrote:

Dear Editor,

The best kind of applause to both Catherine Zeta Jones and to Demi Lovato for their courage in refusing to be ashamed about an illness that just happens to affect a body organ known as the brain. As Zeta-Jones so beautifully put it, “There is no need to suffer silently and there is no shame in seeking help.” And Ms. Lovato has, I hope, inspired others of her generation to be open and accepting of their diagnoses and the treatment that helps. As the mother of a wonderful kid who developed schizophrenia in his late teens (a common timetable for those with gradual-onset schizophrenia), I look forward to the day when my son – who, by the way, is in recovery with the help of treatment, patience, and love – and others with schizophrenia can speak as openly about their illness as well. While bipolar disorder is essentially a mood disorder and schizophrenia’s cluster of symptoms is more accurately described as a thought disorder, there are many areas in common. The greatest- and most shameful – of these is the presence of stigma. One day I hope my son – and the many others who have a diagnosed mental illness – will receive the same amount of respect, understanding, acceptance and research dollars as those who have illnesses that affect other organs of the body. Once again: brava, ladies!

Randye Kaye
author: Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope
(Rowman & Littlefield, summer 2011)
Family-to-Family teacher and trainer for NAMI (National Alliance on Mental Illness)

Schizophrenia and a "Great Personality" - possible? Yes!

2011-04-24T17:20:00.002-04:00

This marks one month of employment for my son Ben. One full month! He loves his job. He has an answer when people ask him "What do you do?" The increase in his energy and pride is thrilling. Really. Thrilling.

Do I worry, still? Hmmm. Well, let's just say I'm keeping my eyes open for signs of stress. And simultaneously trying to stay grateful in each moment. I don't call Ben to see if he has gotten up in time to go to work - but the thought occurs, several times a day. NAMI has taught me that letting go is part of what parents must do - all parents, actually, but it's a more intense process when you've seen your child led into the mental hospital more than once. Letting go, slowly. Learning to trust his abilities, slowly. He has earned it.

Ben said yesterday that his manager told him he was hired because of his "great personality": friendly, "good with people." Wow. What a long road to this place. I know who my son was before the illness (brilliant, charming, loving, funny); I also know how he was when in crisis (mostly unreachable). To see Ben's personality re-emerge - tentatively at first but more strongly now - is indescribable.

Schizophrenia and other mental illness symptoms come in two categories: Positive (added to personality) and Negative (taken away from the personality). The latter is as heartbreaking as the former.
Ben's current state of recovery is, I hope, inspiring; still, I know it would change in two days if treatment should stop. So much more research is needed.So much more. For so many, like Ben, are waiting to come out from behind their voices.

Negative symptoms can be helped by certain medications. They can also sometimes respond to the other vital areas of treatment: community, love, purpose, patience, and the proper balance between challenge and reality. According to schizophrenia.com, a short summary of a list of negative symptoms are:

lack of emotion - the inability to enjoy regular activities (visiting with friends, etc.) as much as before
Low energy - the person tends to sit around and sleep much more than normal
lack of interest in life, low motivation
Affective flattening - a blank, blunted facial expression or less lively facial movements, flat voice (lack of normal intonations and variance) or physical movements.
Alogia (difficulty or inability to speak)
Inappropriate social skills or lack of interest or ability to socialize with other people
Inability to make friends or keep friends, or not caring to have friends
Social isolation - person spends most of the day alone or only with close family

Catherine Zeta-Jones, Charlie Sheen and kicking the shame out of mental illness

2011-04-14T10:26:00.001-04:00

According to CNN, "Catherine Zeta-Jones, has checked herself into a mental health facility.
The actress, who has been by Douglas’ side since he was diagnosed with throat cancer last fall, is seeking treatment for bipolar II disorder, her rep confirms to CNN."

There is an excellent link to an article on bipolar disorder here - and brava for Ms. Zeta-Jones for not only getting help, but for choosing not to keep it a secret. This takes courage, class - and, I believe, a desire to help others by example.

As for Charlie Sheen - well, no one can diagnose from afar, but I sure would bet a cup of coffee on the fact that he, too, has bipolar disorder. Just saying. And, with acceptance and continued treatment, he could be back on Two and a Half Men by the fall. However - the road to acceptance is no short journey.
Some never make it. Just read Dr. Xavier Amador's book, I Am Not Sick I Don't Need Help, to hear more about why. He talks about schizophrenia, which is a thought disorder; bipolar is a mood disorder, and that makes for many differences. With my son Ben's schizophrenia, there is no moment when his eyes shine with his full personality the way they used to before his illness developed; With bipolar disorder, there is often a precarious period during which the highs seemed tempered by the lows. As I sometimes say to the members of a NAMI Family-to-Family class when I teach about the different illnesses, "at least with bipolar you get to be charming part of the time." It gets a laugh - a painful laugh. But still. Hence, Charlie Sheen's wonderful timing in comic performances - and his outlandish hubris on his live tour.

However, there are similarities as well in thought vs. mood disorders. Psychosis is psychosis, and it's hard to diagnose a speeding train.

Britney Spears - remember the shaved head? Recall how her father finally took control and became legal co-conservator? See how well she seems to be doing now? That is so wonderful to see; still, in interviews promoting her latest CD, I see no reference to what really seems like a bout with bipolar disorder. Is it her family's right to keep this all private? Absolutely. But I can't help but imagine how many young people would be helped if Britney were to talk openly about her struggles, and if she was helped by treatment: medication, family involvement, therapy. So many college students suffer from depression and - more importantly - do not seek help because of shame.

Let's get shame in mental illness out of the closet and kick its butt. Being open about treatment is a great step towards that acceptance. Wishing Catherine Zeta-Jones and her family lots of love, and the same empathy and applause her husband Michael Douglas got when he publicly dealt with cancer.

Spreading Hope: Speaking and Submitting 28UFDXR7Y75H

2011-04-13T17:06:00.000-04:00

My potential book publicist just described Ben Behind His Voices, and its message within, as "a beacon of hope" for those who are going through any similar challenge with a disability in a loved one. I hope so. Oh, do I hope so. That is my dream for this memoir, and for this blog: to spread hope, to reduce stigma, to open dialogues, to increase understanding and respect for those with mental illness and for their families.

I've submitted this blog to Technorati so that others can find it. To do that, I must include the code here: 28UFDXR7Y75H. (It's in the title too - just in case)

Meanwhile, on June 9th, I will be the keynote speaker for Fellowship Place in New Haven, Connecticut. Fellowship Place is a shining example of how important community is to those in the mental illness recovery process. NAMI reminds us that essentials for recovery include, among other elements:

a safe and stable environment
an educated, supportive family
something to get involved in: work, community, advocacy
sustaining hope and a vision of what is possible.

My Ben would not be where he is without his community - his job coach, caseworkers, house supervisors, doctors, family a friends. It takes a mental health village. Kudos to all who serving as a beacon of hope, and to all who are absorbing it all so they too may someday advocate as well.

Fellowship Place Community

NAMI Family-To-Family: Happy 20th Anniversary

2011-04-07T15:32:00.000-04:00

My son Ben is two weeks into a job. An actual job, with paychecks and everything. And by “everything”, I mean a reduction in benefits which almost wipes out the money he’s earning…but that’s another story. The main thing is that Ben is earning this money, and that feels completely different to him. The change in his self-esteem is astonishing. He has something to say when people ask him, “So what do you do?”

As the publication date of Ben Behind His Voices approaches, I find myself thrilled that its launch will coincide with the 20^th Anniversary of NAMI’s Family-to-Family Program, because that is the course that saved my family by teaching me what I needed to know to cope with my son’s mental illness. NAMI helped me, and then I had the tools and the support to help my family – including, eventually, my son.

In January of 2002, I walked into my first F2F meeting – and I walked out completely changed. Although NAMI support groups had thrown me my first lifeline out of the hellish confusion of my son’s symptoms, I needed more. F2F was different from the support meetings in that it was a structured, once-a-week, course that was more educational in nature. In twelve weeks, I could learn about mental illness and its effect on the entire family, including the person who suffered from the illness. This was taught by other family members who were trained by NAMI to implement the course. And – it was free. All that was required was the commitment to attend all twelve classes, one evening a week, for 2 ½ hours each class.

What did I get?

Clarity.

Clarity can bring many other things along with it: Understanding. Mourning. Hope. Anger. Grief. Bonding.

This, I think, was a clearing of my future path to acceptance and action. It was a start, and a glimpse. Without this knowledge, I might very well still be fumbling blindfolded through the woods. Sometimes I still am – but since F2F, I always have an idea how to find the path once again.

The brilliant curriculum of F2F was designed by Joyce Burland, Ph.D a clinical psychologist whose experiences of coping with schizophrenia in her own family over two generations have deeply influenced her understanding of family trauma in mental illness.
This was a program written by someone who had been there, who had stumbled through her own journey as the mother of someone with a mental illness. Dr. Burland’s idea to educate the families in similar situations had initially been met with disbelief. Countless professionals said: “What do families need all that information for?” But she knew better, and persevered. And now, the program has grown and keeps growing.
Without revealing too much about the materials, which really must be experienced in the group setting that helps make it so affecting and valuable, I will tell you that there were many flashes of insight and realization that began to reshape my perspective. This process was not always easy. In fact, it was never easy. Most of that clarity came at a cost. Understanding teamed up with guilt. Information came along with fear. Changing my vision of the future brought anger and grief.
A lot of it was hard – very hard. But at least it was real. And I discovered that I was not the only one dealing with these issues, having these feelings.

Family-to-Family’s greatest gift was this: I stopped hating my son. I learned new ways to cope, new ways to communicate with Ben. The course took us from painful realization to empathy for our relative’s experience and the hope that our families could someday absorb these new truths and progress to acceptance and advocacy. But the only way to the final stages of emotional response was through the pain. No shortcuts to the stage of acceptance.

There was so much I had learned. And still so much I didn’t know.

But now, armed with all this new and overwhelming information, I felt I could at least talk to the professionals on a respectable level. It empowered me. The class members empowered each other.

In the past, I had been trying not to react. Now, at least, I had some tools as to how to react, and some empathy for what life might be like for Ben.

I was going to need it all. Many crises lay ahead in the next few years. Without NAMI, I don’t know how we would have survived it. Even with NAMI, I don’t know how we did it.

Happy birthday, Family-to-Family.

Mental Illness and Work: Capability, Dignity, Small Steps

2011-03-25T15:15:00.001-04:00

Three hundred people showed up to a job fair this month for seasonal work at Connecticut's only zoo. Twenty people were hired, and one of them is my son Ben. Why is this such a big deal? Because Ben hasn't been hired for a job in over eight years, since before his first hospitalization for schizophrenia. I am so overwhelmed with surprise and pride at this news that I realize I hadn't even dared to dream that this could happen yet for Ben. In recent years, he'd begun to succeed in college part-time (the fact that he is starting to know what he can realistically handle is a huge step in itself.)

So much of Ben's growth in recovery has happened in these small steps that this huge leap into the work world scares me a little - yet I know (and keep reminding myself) that this is Ben's journey. My questions - will this be too much stress for him? will he be able to wake himself up every morning when he has to get to work by 8:30? will his schoolwork suffer? - are ones I must keep to myself, and trust my son and his team of caseworkers to handle the answers without me.

But - over-riding all this is the wonderful pride I see in my son's eyes. The value of having an actual job, of feeling useful, of being wanted for what you can offer: yes, indeed, priceless. Ben, who while in the throes of the onset of his symptoms wrote that work was a "government plot designed to enslave us," has now changed his mind. This week he wrote this:

If I were to give one piece of advice to the reader of this 'message', I would say that in order to get to where you want to be in life, what you have to do is walk the path. Now, I understand that this probably sounds easier said than done, and - I won’t lie- it is. I now have goals for my life, and I must be willing to actually perform the steps that the goals require. One way to make this easier is to learn from one’s past, and embrace the lessons which will make walking the path easier. - Ben, 2011

A huge question, though, is one that no one on his team seems to be able to answer correctly - what, exactly, will be the effect of this minimum-wage job on Ben's benefits?
His job coach says he is an "employment specialist", not a "benefits specialist," so he doesn't know. Ben's group home staff members ask his agency caseworkers, who ask their supervisors. Wrong answers abound.

Finally, I find some answers. Tips to help you, if you are in similar circumstances:

There is a "benefits specialist" somewhere in the system. Hunt and find.
Social Security has a "Ticket to Work" program designed to help those receiving disability benefits as they take steps to self-sufficiency. Go to www.socialsecurity.gov/work for details
There are different rules for SSDI, SSI, and any additional benefits you might get on a state level.

Ben is walking his path. Today. And someone has finally noticed - enough to hire him. I, as always, have my fingers crossed and my gratitude high. Having a job to go to is so the most amazing boost for Ben's dignity. Is it that way for you, or your relative with mental illness?

Four Rooms, Upstairs: A Psychotherapist's Journey Into and Beyond Her Mother's Mental Illness

2011-03-24T13:56:00.000-04:00

Four Rooms, Upstairs: A Psychotherapist's Journey Into and Beyond Her Mother's Mental Illness by Linda Appleman Shapiro

My rating: 4 of 5 stars

Linda Appleman Shapiro writes honestly and beautifully about her experience as the daughter of a mother with mental illness, coping with the confusion of the mood swings, her struggle to understand, and the stress and shame of keeping it all a secret. We meet her family members - Linda, her mother and father, and her brother - and soon the dynamic in her Brooklyn home becomes clear - as does the love that prevails.

In addition, we get a nostalgic peek at life in Brighton Beach, Brooklyn, back in the 40's and 50's, when "hanging out at the beach" was a huge part of a young teenager's life. Shapiro has the hindsight, now, of a trained and experienced psychotherapist. This, combined with her clearly-depicted childhood memories of life in those "Four Rooms" makes for an engaging, enlightening and ultimately therapeutic read.

View all my reviews

His Bright Light: review of Danielle Steel's book

2011-03-24T13:34:00.004-04:00

His Bright Light: The Story of Nick Traina by Danielle Steel

My rating: 4 of 5 stars

This is my favorite Danielle Steel book. Yes, it is partly because I share her experience of parenting a child with mental illness (though Nick had childhood-onset bipolar disorder and my Ben has schizophrenia which began to appear gradually in his mid-teens) - but, this common thread aside, I couldn't help but applaud Steel's candor and courage in sharing her experiences with the world.

Her Nick is vibrant, charming, brilliant - and troubled. Steel struggles to understand, especially in the light of all the "experts" who tell her that the illness she suspects simply doesn't exist.
This memoir not only lets us into the family experience, it also shines a spotlight on the mental health system, with the flaws and limitations of too little research and too much closed-mindedness.

And, oh boy, are there flaws. From laws that forbid the family to "force" medication on someone who is so clearly helped by it to psychiatrists who are all too quick to "blame the mother", these "flaws" quickly close door after door.

Kudos to Steel for telling her story. There is no fairy-tale ending here. Perhaps that's why she writes so many such endings in her novels.

Mom-to-Mom, and I thank Steel for this book. And my heart goes out to all in her family.

View all my reviews

Henry's Demons, review

2011-03-24T13:32:00.003-04:00

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

Ticket to Work: The Road to Self-Sufficiency, fingers crossed.

2011-03-15T13:48:00.002-04:00

Ben has a chance at a job. A real job. Minimum wage, yes, but for him to make it to a second interview, and then to a possible job offer for the summer...well, the tears I feel remind me that I hadn't really even dared to dream this for him. Ben hasn't had a job in eight years, since he was twenty years old.

He is so excited - it's the validation, the possibility he may be able to earn money, be useful, have something to say about his life other than "I live with roommates and do volunteer work" and - lately - "I go to school part-time", a miracle in itself . He is also facing, suddenly, questions like:

What will come up in a background check? Will the employer know about my hospitalizations and diagnosis?
Will I lose my SSDI? SSI? State help? Medicare? Medicaid?
What is a "Ticket to Work", and do I have one?
Will I lose respect and the chance at this job if I reveal my diagnosis?

Practically, I was able to find answers by calling Ticket to Work, and by visiting the Social Security Work Website
The emotional questions are the ones that are more difficult to face
- but Ben is asking those questions, and setting his limits as to how much he wants to, or has to, reveal. His dignity is so at stake; still, I'm amazed and proud at what he's doing: calling his job coach himself, contacting other so-called "experts", formulating exact answers to the questions that may come up. He has more than risen to this occasion. Again, the happy tears.

And the fears, which I am trying to ignore.

Will this be too much for Ben? Will he be able to get to work at 8:30 AM each day? Will the no-smoking rule cause problems for him, even though he says it is not an issue? Will the stress cause a relapse? Shouldn't he take a lesser, part-time position?

But these are Ben's decisions, not mine, All I can do is help with the research and share the information with him and his providers. Then let go. And have faith: faith that he can handle 32 hours of work each week, and still keep up with 6 college credits. And not break under the stress.

Nothing would make me - and Ben - happier.

Author Reflections: "Ben Behind His Voices" launch date set

2011-03-11T12:27:00.004-05:00

It's real! The official publication date for Ben Behind His Voices is September 16, 2011. When you search on Amazon or Barnes & Noble, there is a listing. As a first-time author, I have to admit that this is even more exciting than my first kiss. Yep. At least I think so - the first kiss was so unexpected (another story for another time), while this listing is the culmination of years of writing, rewriting, query letters, bouncing back, trying again, and finding and reconfirming my own faith in the book's value to others.

Yet this is nothing - nothing - compared to the challenges Ben himself has faced in the same period of time.
In a way, the timing of Ben's publication couldn't be better, for when I first sat down to write our story Ben was just a few months into recovery. Now, he has logged over five years (knock wood) hospital-free, and we've been able to see how recovery can progress when psychosis is avoided for longer periods of time. So, because of this long journey to publication, I hope that our memoir will offer even more information and hope to its readers, as I've updated Ben's progress frequently as the drafts piled up.

Here is the description from the listing (image and "search inside" features will come later, but you can pre-order) - it contains my hopes for the book's effect: to increase understanding and respect for those with mental illness, and for their families; and thereby reduce stigma.

"Ben Behind His Voices is the gripping story of one family's challenging experience when their firstborn is gradually struck down by schizophrenia - and how they learned to love and support him throughout his eventual steps to recovery. This page-turning narrative will inspire and educate any family going through hard times with the mental illness of a loved one. It also provides valuable insight for others who want to understand how families are affected when mental illness strikes."

For any families in the same boat: there are guidelines of info and resources at the end of most chapters. I hope you will fall in love with my son Ben before you get to the part where his illness takes hold. He is there, behind his voices, all throughout the book - and he still is. As is your loved one. Hard to see sometimes, I know. but love helps. So much.

Marijuana and Schizophrenia: another view

2011-02-23T11:22:00.003-05:00

The latest fad in schizophrenia theory: marijuana caused it. Yet another finger to point, to create the illusion that it is somehow the "fault" of the person who has the illness. Here's an intersting article that tells another side of the story: Marijuana and Schizophrenia: Cause or Therapy?

De. Phil Leveque begins with these words: "This story is engendered by an article in TIME Magazine Feb. 21, 2011 entitled Pot and Schizophrenia: A Dangerous Mix. To put it mildly, TIME is full of crap and so are the authors of the medical article from the University of New South Wales in Australia.
It states they reviewed 83 studies and found that POT smokers who developed psychotic disorders did so 2.7 years before non-smokers. The medical article is very suspect and I will try to explain why."

I wrote to Dr.Leveque:
"Thank you! Finally, another view to the newly-popular 'marijuana causes schizophrenia' theory. As the mother of a son with schizophrenia, educator with NAMI, and the author of a memoir that we hope will spread understanding and hope re mental illness, I applaud you for your article in the Salem-News.

It has been my understanding that my son began to smoke pot as a reaction to his illness, not the other way around. Schizophrenia is nobody’s fault. Many who don’t know better will grab at any explanation so that they feel we have some control over who “gets it” and who is spared. The only thing I know for sure is that early detection and treatment can help avoid psychosis, and therefore provide a better prognosis for recovery. But my son did not 'cause' his own illness, through marijuana use or anything else. Thank you for refuting the Australia study.

If you need any comments from a Mom/author who has been through it – and whose son is currently living a full (and clean/sober) life, despite his illness, please feel free to contact me.

Thanks again,
Randye

Randye Kaye
author: Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope(Rowman & Littlefield, summer 2011)

Can Schizophrenia be Prevented?

2011-02-21T09:47:00.033-05:00

If you want the facts and latest news about schizophrenia and the people affected by it (those who have been diagnosed and the people who love them), I highly recommend two amazing websites: http://www.nami.org/, and www.schizophrenia.com.

NAMI has taught me that there are nine stages of emotional response for the families of those with mental illness. Whether you are in an earlier stage like crisis/chaos, a middle stage such as anger/grief or a later stage such as understanding, information will - immediately or eventually - help to empower you.

Click on the address or title for the links to each website - NAMI's home page, and a new article found on schizophrenia.com about prevention of schizophrenia.

Preventing Schizophrenia
One of the messages in my book Ben Behind His Voices:One Family’s Journey from the Chaos of Schizophrenia to Hope is that early detection is vital. Articles like this help us know what to look for, much as we may not want to see it at the time. Much research suggests that prevention of psychotic breaks can avoid the destruction of brain matter. I encourage you to learn all you can

Legislative Social: Where were the lawmakers?

2011-02-16T10:56:00.004-05:00

Here in Connecticut, it's fix-the-state-budget time, and our local NAMI affiliate arranged an event last night that was powerful, organized, and well-attended - except for the state legislators who'd promised to appear. The speakers were inspiring; they had progressed from homeless to productive, from hospital patient to independent citizen, from dropout to Masters Candidate -all with the help of (a)integrated treatment and (b) community. If services are cut for these speakers, they will lose all they have gained. I wish Ben had been there with me to hear their stories; I hope that, someday, he might be willing to share his.

If services are cut, the true cost will be great.
How much more will it cost the state in the future - and, more importantly, how much will be lost in the lives of these speakers and others like them - if we take away the support that helps them now? Without access to a supportive community and proper treatment - including essential medication - my son, all those inspirational speakers and countless other citizens like them, are likely to wind up in hospitals, homeless shelters, the streets, or in jail. That would, indeed, be pound-foolish - and devastating to the lives of courageous individuals who have already accomplished so much.

Where were our state reps? How can they hear the message? It falls to us to speak up for ourselves, for our loved ones. But no one can tell the story the way it was told last night. And too many were absent. Kudos to the 2 state reps who did find the time. Thank you.

Another family's schizophrenia story

2011-02-08T13:09:00.004-05:00

Before we found our publisher for Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope, my agent and I received several quite lovely rejection letters, stating how much they were moved by the story and by the writing - but that they feared it "just wouldn't sell" because of the subject matter.

Now, coming out very soon, another family's story, called Henry's Demons. This is by Patrick Cockburn, his wife, and his son - a UK family, each telling their part of the experience.
Reviewed by the NYTimes, moving up high on Amazon. I've just ordered it, and hope to connect with the family someday. Yes, this subject does sell - and it needs to be heard.

Is this "competition" for my book? No! It is a partnership. The more families that come forward to tell their story, the more we can all work together to increase understanding, reduce stigma, and increase respect. Bravo!

Creative writing, then and now

2011-02-06T17:20:00.004-05:00

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!

2011-01-28T10:30:00.005-05:00

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 http://www.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

2011-01-17T17:12:00.004-05:00

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?

2010-12-04T14:10:00.003-05:00

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

2010-11-24T09:30:00.006-05:00

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

2010-11-04T13:57:00.003-04:00

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.

2010-09-30T09:02:00.001-04:00

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

2010-09-03T11:51:00.001-04:00

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

2010-08-02T10:44:00.002-04:00

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

2010-07-29T14:24:00.002-04:00

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

2010-07-23T10:34:00.001-04:00

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

2010-07-22T15:31:00.002-04:00

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

2010-07-05T11:20:00.004-04:00

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

2010-05-27T13:07:00.001-04:00

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

2010-05-12T10:13:00.000-04:00

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!!!"

2010-05-08T11:05:00.000-04:00

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 degress 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 schocked. 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

2010-04-12T22:28:00.000-04:00

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

2010-04-02T10:32:00.002-04:00

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

2010-03-15T11:27:00.003-04:00

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

2010-03-02T10:25:00.002-05:00

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?

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

2010-02-21T19:57:00.000-05:00

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

2010-02-21T19:14:00.002-05:00

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.

Now and Then: Psychic Vampires on the Phone

2010-02-17T11:01:00.000-05:00

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 almosts 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)
http://www.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 http://www.randyekaye.com/)

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

2010-02-06T19:16:00.001-05:00

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.

new excerpt: from Part One: Before the Illness

2010-02-04T15:56:00.001-05:00

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

opening chapter, the book

2010-02-03T20:09:00.002-05:00

This post updated January 28, 2011 - because the "right publisher" has come to us! Rowman and Littlefield will publish Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope in August of 2011! Thanks to Claire Gerus for repping this, and to R&L for believing in it. Please go to www.randyekaye.com to sign up for updates on the book, or join the facebook group Ben Behind His Voices, the book.

Back then I wrote:
The right publisher will help bring hope and understanding to the many families – one out of every four, in fact – who live with mental illness every day.

A young man stands before you. Diagnosis: Schizophrenia.

Is the situation hopeless? No. Is his life worthless? Absolutely not. Is he about to pull out a gun and begin shooting? Despite what the media would have you believe, the answer is still no.

Did his family stand by, helpless and confused, as he fell into pieces bit by bit in ways they could neither understand nor control? Well - yes. Unfortunately, yes.

But is recovery also possible? Can the broken parts be pieced back together? Also – with education, support, acceptance, and love – yes. YES.

I will post excerpts from the book here on this blog, so that others may begin to hear the story. If you want to know more, please follow.

This is from Chapter One:

It’s the night of the Great Northeast Blackout, August 2003. I sit in the ER waiting room, watching my son Benjamin, 21, recently diagnosed with paranoid schizophrenia. He stares at his feet, mumbling to himself, possibly to voices only he can hear and whose existence he always denies. Ben glances up at me now and again, his lips in a faint smile but his eyes clouded and unreachable, and then returns to his inner conversation. Suddenly he looks up once more, this time to address the elderly woman seated in another hard plastic chair across from him, coughing violently.

“Excuse me, ma’am, are you all right?” Ben asks.

he woman smiles. “Yes, son, I’ll be OK. Thanks.” She takes a sip of bottled water; her coughing calms. Only then does Ben abandon the battle to stay focused on the outside world, and give in to the voices. Not until then does he return to his own internal world of psychosis. This, I can tell, is a relief for him.

He’s still in there, I thought. He is worth saving.

This was to be Ben’s fifth admittance to the psych unit in six months. It also marked the beginning of his recovery - and the start of my family’s road to acceptance of his illness. No Casseroles for Schizophrenia outlines that journey, from the bewildering and ultimately terrifying arrival of symptoms, through the crises of psychosis and hospitalizations, and finally to the “new normal” of recovery and hope.

Schizophrenia is arguably the most misunderstood mental illness; certainly no one comes to your door with casseroles when your child is hospitalized with this illness, especially after the first time it happens. But a person with schizophrenia is a person still worth loving – and that love helps immeasurably on the journey to recovery and acceptance.

All is not lost.

Family to Family

2009-10-18T12:20:00.000-04:00

Back to teaching NAMI's wonderful course, Family-to-Family. As always, the love and confusion, the bravery and frustrations of these families amaze me.

Yesterday I taught an acting class; one student, wheelchair-bound, was accompanied by his father who took notes, gave physical aid and emotional support. Parents who are "awarded" the responsibility of a child with a disability, whether physical or mental, face many of the same challenges. These parents will not be able to look ahead to the day when their child is totally independent. There is no clearly defined light at the end of any parenting tunnel ...but when your child is disabled, that light is dimmed even more.

Still, the love is evident.

My child, who is 27, can at least walk by himself; he can, when balanced by his treatment, do many things without me. Sure, we still drive him to saxophone lessons, supplement his meager income, take him grocery shopping. He may never be totally on his own. But there is much to be grateful for.

A terrific novel, exploring the family role when there is disability, is Jodi Picoult's Handle with Care. Love is complex, unpredictable, immenseley valuable, and not always easy.

Beyond Trauma

2009-10-01T21:47:00.000-04:00

I had the pleasure of presenting with Linda Appleman Shapiro, author of Four Rooms, Upstairs: A Psychotherapist's Journey Into and Beyond Her Mother's Mental Illness, last week at the library in Ridgefield, CT. Each time I tell Ben's (and our family's) story, I see at least one face in the audience that seems to open with relief: Can we really talk about these secrets? Is mental illness really not the source of shame I've been assuming it is?

Yes, let's talk. A mental illness is just that: an illness. It is no one's fault. It just is.

Great books for practical advice:
When Someone You Love Has a Mental Illness by Rebecca Woolis
I'm Not Sick, I Don't Need Help - Xavier Amador - great info, "system" doesn't alwayswork, but helps understandng greatly
and - believe it or not, for basics - there are "dummies" books for schizophrenia, bipolar, etc.

What familes need:
Support
Education
Acceptance (Letting Go)
Reality check, Respect
Comunication
Hope - and, yes, Humor

It spells SEARCH.
My son Ben is living a very worthwhile life, filled with love, even with paranoid schizophrnia. Even so, my expectations have changed. It is a new normal. R for reality...

Bride's Best Man

2009-09-24T17:48:00.000-04:00

My children gave me away this summer – I got remarried. At toasting time, my daughter Ali got so emotional she couldn’t finish her speech, so her big brother Ben put his arm around her, gently took the microphone, and finished for her. He began with, “First of all, Mom, you look so beautiful tonight”, and the entire room burst out in applause. Ben’s toast was one of our favorite memories from the wedding, especially because he rescued his sister when she couldn’t go on.

Ben is not “supposed to” care about others. He has paranoid schizophrenia. But he does. He is full of love, and we are grateful for his presence. Our family lives in the moment; there are, thankfully, many moments to treasure. We know, all too well, that tomorrow could bring change. Still, we have found hope and love that we once thought might be lost forever.

I am so grateful. There was a time I never imagined I'd have such a gift; there was a time, way before that, when I took its possibility for granted.

insight?

2009-07-27T13:06:00.000-04:00

So yesterday Ben was visiting for the weekend (we went to see two outdoor theatre productions, which he loves - and I think he followed the plot of Much Ado About Nothing better than my fiance and I did...), and he told me that he'd been talking to another person who lives in supported housing with med supervision, etc. He said - and I quote - "He's diagnosed with schizophrenia, too." - WHOA! Milestone. Ben seldom acknowledges his diagnosis, and I"ve learned not to bring it up.

I simply said something like, "Oh- that's interesting", but inside I was heartened. One more baby step. If I don't push, if I let the journey be his journey, if I keep the right combination of letting go and encouraging progress, hope lives.

This morning there is an article in the paper from the AP, "Scientists try to stop schizophrenia in its tracks". Schizophrenia's prodrome - validation for need of early detection. http://news.yahoo.com/s/ap/20090726/ap_on_he_me/us_med_stopping_schizophrenia

Dean's List

2009-06-28T16:44:00.001-04:00

If anyone had told me, 5 years ago, that my son Ben would return to college, earn and A and a B - to make the Dean's List! - and would be feel enough to drive me to work as I recover from hip replacement surgery, I'd have been both doubtful and grateful. Grateful for the hope and faith, doubtful because it would have seemed like such a pipe dream. Even now I know it's best to stay in the moment; really, the only way to approach happiness of any sort. Feel it, appreciate it, live in that happiness. Don't think about what the success may predict; just know that there is success.

Ben, who began this semester by refusing his meds - afraid to succeed? - finished with the best results since eighth grade. There is hope; there is a maturation process, there is recovery, no matter how slowly it progresses.

I am SO proud of Ben!

Daring to Hope

2009-04-24T11:02:00.001-04:00

As Ben grows, and grows up (he will be 27 next week), it seems increasingly clear that his maturation process is in slow motion - but that it is happening, however slowly. This gives me hope, and great joy - as long as I remember to stay in, and enjoy, the present.

The Medicare issue seems to be resolved for now - a few calls and one visit to the Social Security office, where even the caseworker struggled to understand the government language of the letters I've received as Ben's conservator. I felt much better, and less stupid, after witnessing that.

Ben has called me three times this week with good news. Twice to tell me about good grades for his school assignments (!!!), and once to tell me he has a job interview on Saturday, which his job coach will help him prepare for. Yes, there was another call with another agenda - he and a night staff person in his group home are butting heads, and it's frustrating for him; but all in all, the good news calls outweighed the calls for help, and that's a miracle I'm savoring. I do think Ben is showing amazing progress, especially now that he's been on his medication more consistently, and out of the hospital for a few years. Could his brain cells be in repair mode, as research suggests?

If the other shoe falls - and family members of people with mental illness live with that, always- I know we'll handle it somehow. Meanwhile, I'm choosing to be happy! And to notice that Ben is showing signs of maturity that I prayed for while he was in high school, in what I now know was the early stage of his illness. He's doing his homework! He's even earning extra credit. He does not WANT to miss class.

So he's ten years behind in exhibiting these signs. Ten years behind kids who are luckier than he was - lucky enough to have unimpaired brain chemistry. This is still progress -and I'm so proud of him. Let this be a sign of hope to parents who are still lost in despair. There is hope. Patience. Do your best, and savor the good moments. With luck, there will be more of them ahead.

Ask about Ben Behind His Voices: One Family's Journey through Schizophrenia to a New Normal
contact Claire Gerus, cgerus@comcast.net, literary representation.

Medicare premiums stopped?

2009-03-19T09:34:00.000-04:00

The notice comes from Social Security, informing me that "The State" will no longer pay for Ben's Medicare - as of two months ago? No reason given. What? What does this mean? Is he without Medical Insurance then? He has no income, and is trying so hard to get his life back. For the first time in three years, he's in school and actually loves it - doing his assignments, taking the bus every Tuesday and Thursday. His benefits add up to under $900 a month, from SSI, SSDI and a housing supplement. All this to pay room, board, bus fare - with about $25 left each week for all other expenses (including buying lunch at school). He cannot possibly afford to pay for his own Medicare. What gives?

So I call Ben's caseworker at his house, who is sympathetic but doesn't understand what's going on either. The house manager says "I'm clinical, not legal", so he doesn't fully understand the benefit system. I call Social Security, who says to call the State. The State operator sends me to an extension where there is no voice mail and rings 20 times; I call back and ask the receptionist for help. Someone has got to know something. She takes pity on me and looks up Ben's info; evidently a Mr. Banner closed Ben's case in 2007. What?!?! I call Mr. Banner and leave a message. I call my lawyer, whom I can no longer afford to pay, in a panic. What does this mean?

Finally Mr. Banner calls me back and is nicer than I expected. He says Ben needs an EMB, I ask what that is, but he doesn't really know what it stands for. Social Security has to make the determination as to whether Ben is qualified to get Medicare. He sends the EMB. I call Social Security, and speak to another actual human. She tells me this should all be straightened out soon, but since the SS office is two months behind, Ben's premiums will continue to come out of his benefit check for another two months, and then he will be reimbursed.

I call Harrison House, where Ben resides. I think we have this straightened out. But no one seems to know how this occured in the first place. My lawyer returns my call and says she's glad I was able to get this straightened out. Me, too - if it is.

What do consumers with a mental illness do if they have no mother to chase down the answers with phone call after phone call? If six mentally healthy adults can't figure it out, don't know where to turn, how does the system work for someone whose mental capacity is compromised by more than just a ridiculously complicated system? No wonder homelessness seems like a simpler option.

I'm so grateful Ben has people on his side, including me. I'm so grateful.

grades

2009-03-12T21:45:00.001-04:00

Ben texted me today, with the usual message: "Call me when you get this." Often, this causes my anxiety level to rise - what could be wrong now?" . This time, Ben added "I have good news for you." The news? He got an 85 on his first acting assignment! Wow. Wow. I am happy today. So is Ben. Staying in the moment, always a goal. But I'm so glad about any day that brings news like this. Also, listening to a taped "Psych 101" course, learned that over half of the people with schizophrenia are also addicted to drugs...and Ben has been clean 5 1/2 years. He has so much courage. I must never take that for granted.

Amazing conversation

2009-02-16T17:07:00.001-05:00

Ben called me last week to tell me that he had delivered his first assigned speech in "Public Speaking 101" class - he chose an autobiographical theme "My Mission in Life", and his is - poetry. According to Ben, he got two pieces of negative feedback from classmates to work on: saying "um" and looking at his notes too much. the rest of the comments were positive!....one was "You're so emotionally expressive." Oh my God, if they only knew. The classmates have no idea Ben has schizophrenia; for him to be emotionally expressive, in this constructive way (i.e. not psychotic) is amazing. Truly amazing.

Oh - and he has started doing push-ups. Cute girls in class, he says. I sent him a text to ask if his muscles were still sore. the reply: "very much so. but I am not giving up!" So far in school, so good. The only way to stay with this: enjoy the moment. How wonderful it is, though.

saved!

2009-01-27T22:50:00.001-05:00

Ben is taking his meds again. thank goodness. Dodged another one. I know how much he wants to be "normal" now that he will be taking classes with peers. Will he ever realize that the meds are helping him to be more "normal" than he could ever be without them, because they keep him balanced enough to remain out of the hospital, off the psych ward?

I can't know the answer to that. I'm just glad he's back. It's a good day.

setback

2009-01-21T19:05:00.001-05:00

I knew it. Got the call today that Ben refused his meds last night. He said they make him too tired (well, they do) and he wants to try something else. What? After three years staying out of the hospital? Rerun. Trouble is, there is no other medication that works for Ben. Clozaril is the only one that makes his progress even possible. I think school - the idea of success,maybe - is too much stress for him. I've been on this roller coaster before. There's that fine balance, always: expectations low, but not too low. Challenge and promise for Ben, but not too much.

college admission, and new research

2009-01-20T18:31:00.001-05:00

News came in Google alerts today: "Schizophrenia may blur the boundary between internal and external realities by overactivating and hyper-connecting a brain system that is involved in self-reflection, and thus causing an exaggerated focus on self, a new MIT and Harvard brain imaging study has found." This is a new research finding, and it could explain a lot about Ben and his difficulty in seeing outside of himself. He tries, though - oh, how he tries to act as if he is interested in others. He hugs us, says he loves us, goes through the motions - and, sometimes, I even see the spark in his eyes that used to be there, like a candle struggling to remain lit. I know that he experiences and expresses love as much as his illness will allow. I also know, for sure, that he feels the love from his family and that it is essential to his recovery.

This afternoon we went to the local community college; Ben wants to sign up for classes again. I am both proud and worried about this. He was so sweet - introduced himself to everyone from the advisors and the bursar to the bookstore security guards and shook hands all around. He seems so happy to be going back to school. And yet -there was more than his usual amount of retreating inside of himself. I caught him muttering to himself a few times, or wearing that cagey expression on his face that says he doesn't quite trust the world. When I looked at him, he snapped immediately out of it.He kept saying "Thanks so much Mom. This is great!" What choice is there but to support this, his plan to take six credits and get good grades? I can only hope. I want to threaten him, to make sure that he knows not to blow it. This nagging, I know on a deeper level, will not help. But it's really hard to keep my mouth shut. Ben had initially decided to take only three credits, which seemed much more manageable to me. But it's his life - especially after I fill out the financial aid forms for him, so he can pay the tuition. I've laid out the money, but am going deeper and deeper in credit card deby trying to supplement his meager income from social security. I am more than broke. Where are the caseworkers to help him with these forms? What would happen to Ben if he had no mother around?

Do I do too much for him? I don't think so. He lives in a group home where his benefits cover room and board with $20 a week in spending money left over. I help out by paying for the dentist, supplementing his fod with a $100 budget each month (he shops and keeps track), and getting him cartons of cigarettes. Beyond that, Ben has to budget his money. It doesn't go very far. He's working on getting a job, with an employment coach. That's in his lap. His life is in his own lap, and I can't let it break my heart that he has so little in the eyes of the world. Ben is almost 27 years old, and his friends from high school passed him by long ago on the standard paths. This is Ben's journey, not mine.

Ben wants so much to be normal. Will his illness let him have this dream? Will the stress of college be too much for him? Will he wind up overwhelmed, and escape with a psychotic episode like last time? Or will he be uplifted by this chance to rise to the occasion? Will he make some new friends at school? Will he ever get to the point where he accepts what has happened to him, so others he meets can accept and understand it as well?

Classes begin next week. Stay in the moment. I'm proud he has come far enough to try this.

Ask about Ben Behind His Voices: One Family's Journey through Schizophrenia to a New Normal.
contact Claire Gerus, literary representation.

The letter from Ben, my holiday gift in many ways

2009-01-15T12:45:00.001-05:00

This month marks over three years since Ben was last hospitalized. I remain grateful for every day that he is with us, enjoying his family's love. It wasn't always like this. There were times he looked at us with such suspicion that I was afraid to be near him; yet, underneath the chest-tightening discomfort there was always my love for this boy/man, my beautiful child. My mantra has become, "It is what it is" - yes, Ben has changed but he is still here, still worth loving, still with potential to keep recovering.

He has no money, except what may remain from his meager social security payments after group home deductions for room and board. The holidays of 2008 are over, and I have in my possession Ben's amazing gift: he wrote me a letter, handwritten in red ink on a piece of loose-leaf paper. Not fancy, but I know how much care went into it - I know this because I can read his handwriting!

This is what Ben wrote: 1/1/09
A list of my favorite things about you
10. You are always interested in a good conversation.
9. You are fun to be with
8. You have an excellent sense of humor.
7. You unconditionally care for me.
6. You respect my privacy.
5. You can guide me towards being a good person without pushing.
4. You have faith in me; that I can do what I set my mind to.
3. You raised me AWESOMELY - I like how, since I didn't grow up with a father, you made sure there were men in my life.
2. Whenever I need help, you're always there.
1. You love me.

I just want you to know that I think you're great, and not only that, but a great Mom too. You do a lot of things for me that you don't have to, and I really appreciate and respect that. I like that we hang out so much (you are a fun movie buddy), and back when I was using (pot) we wouldn't have been. You taught me a sense of family (not just you), which is something I lost when I was using. Thanks for being a good teacher and a great mother.
Happy Hanukah, Ben

Ben is 26 years old. In 2003, he was hospitalized for psychosis five times, in 2005, twice more. His family's love is a huge part of his recovery - and, of course, so is his medication compliance. The story of Ben's breakdown and recovery, and the family's journey to acceptance, is in my memoir Ben Behind His Voices: One Family's Journey through Schizophrenia to a New Normal. E-mail Claire Gerus, at cgerus@comcast.net for more information. Meanwhile, feel free to comment here as I continue to blog Ben's progress.

No Casseroles for Schizophrenia

2008-12-18T17:36:00.002-05:00

If you are dealing with a mental illness in your family, this blog's for you.
My memoir, Ben Behind His Voices:One Family's Journey through Schizophrenia to a New Normal (formerly titled No Casseroles for Schizophrenia) is represented by Claire Gerus, cgerus@comcast.net. I am a NAMI Family-to-Family teacher and trainer in Connecticut, and professional speaker. My son, Ben, is 26 years old and was diagnosed with a severe case of paranoid schizophrenia about 5 years ago, after many years of confusion for our family during the gradual onset phase. The purpose of the book is to (a) tell the story of Ben's onset, crisis and recovery - especially recovery. All is not lost. Ben's life is worth living, he is worth loving; (b) get the subject - and stigma - out of the closet and into the open air where it can be discussed and, eventually, accepted; (c) provide hope, and some guidelines, for families; (d) educate providers as to what the family experiences when mental illness strikes - increase empathy and respect for the family as well as the person who has the illness. Oh, yes, and attract the right publisher to my literary agent, who believes in this book as much as I do.
Randye Kaye, rep. by Claire Gerus,
cgerus@comcast.net.