Glee and the missing mental illness: schizophrenia

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.

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.

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

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. 

Henry's Demons, review

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

My rating: 4 of 5 stars


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

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

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

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

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.

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.

Another family's schizophrenia story

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.

Ben Behind His Voices this summer!

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

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.

Joey Pants and No Kidding Me Too

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

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

and, as always, www.nami.org

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.

Now and Then: Psychic Vampires on the Phone

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

Now. A text from Ben. It 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/)