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

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.

NAMI Family-To-Family: Happy 20th Anniversary

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.

Can Schizophrenia be Prevented?

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.

Legislative Social: Where were the lawmakers?

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.

Creative writing, then and now

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

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


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

Meanwhile in this letter, from a Mom in England who has lost her son to schizophrenia, the story has unfortunately ended quite differently.

Dream and Reality: Happy Thanksgiving

I had that dream again.

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

yes, things can get better

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

Publication Progress, Ben Behind His Voices

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

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

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

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

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

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

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

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

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

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

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


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



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



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

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

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

opening chapter, the book

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

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.