Schizophrenia: Back in the Spotlight at Last?

Oprah's latest book selection, a new memoir, and HBO's series with Mark Ruffalo - is schizophrenia finally going to get the attention it deserves?

Of all the SMIs (Serious Mental Illnesses) in the news lately, schizophrenia always seems to get the short shrift; it’s like the last mental illness in the closet. 

Unless, of course, there’s a horrific incident of violence. Then the questions about sanity begin...and often finger-pointing at schizophrenia. And then, advocates like me have to bring out the statistics to defend our loved ones: 

• No, schizophrenics are not “more violent”

• No, schizophrenia does not mean “split personality”

• No, it’s not the fault of “bad parenting”.

Currently, this brain illness is back in vogue with three exciting spotlights:

Will these open eyes at last?

Will these open eyes at last?

1. Oprah’s book club selection is Hidden Valley Road by Robert Kolker - about a family with 12 children - 6 of whom developed schizophrenia

2. HBO has begun airing the mini-series based on the wonderful (and devastating) Wally Lamb Novel, I Know This Much Is True.

3. A new memoir is to be released next month:, He Came In With It, by Mimi Feldman

And still, the myths - and lack of attention to research - continue. As fellow author and advocate Feldman points out in her forthcoming book and a recent guest blog post for Pete Earley, 

A huge question looms:

"Why is bringing those with schizophrenia (and other serious mental illnesses) simply to a state of zombie-like compliance considered a success?"

I have my theories, one of which is this: many don’t see people with schizophrenia as save-able, or - worse -  worth saving. Because the illness often robs them of so much besides reality: their joy, their charm, their ability to empathize.

Still, those of us who love someone with this devastating illness, who knew them before it took hold,  can attest to the fact that they are worth saving. They are locked up inside that shell. We love them, and occasionally we see what could be - if only we could find a CURE, not just a management tool.

Right now, as we all struggle with our own kinds of isolation in this covid-19 surreal life, imagine what it might be like to feel that isolated all the time. In the words of Willy Loman in Death of a Salesman, ATTENTION MUST BE PAID.

Let’s hope these three works of art will propel us toward the changes we need to see - and help bring our loved ones with schizophrenia the respect, love, and CURE that they deserve.

We’d give anything to see their joy again.

Schizophrenia and the Family: In a Nutshell?

It occurs to me that some new readers of this blog may not really know the backstory that brought us here.

I've just returned from Warsaw, where I was honored to have the chance to speak to a global audience about our family experience with schizophrenia and recovery in my son Ben - and to have shared the stage (well, one at a time...) with the wonderful Pete Earley, author of Crazy: A Father's Search Through America's Mental Health Madness.

Pete told his story, and I told mine. The challenge was that, while I usually speak for at least a half hour, I had 17 minutes to sum up the last 15 years of chaos, discovery, and hope.  Not easy! But it did encourage participants to pick up the book for the whole story.So, for newbies to this site, here is a "nutshell" version of our path so far. I wrote this to send to NAMI, for possible media interest.

So - the "movie trailer" version of where we've been:

Fortunately, my son Ben (diagnosed with schizophrenia)  is currently doing well - but it has been a long road, and we almost lost him several times - so far. Every time that services are cut, or his needs misinterpreted, we run that risk again. Like many families, we have taken on much of his care ourselves - to make sure things continue to go as smoothly as possible.

 Our story? In a nutshell: 

• Bright, promising childhood - Ben was (is) bright, personable, loving

• Mid-teens: changes begin, become more frightening with the years - isolation, high school dropout, paranoia, a period of homelessness in Idaho

• Finally: diagnosis at age 20 - and I had discovered NAMI, which enabled me to (at last) be an educated partner in Ben's treatment and recovery...when "allowed" to by the system

• A long, dangerous wait for Ben to be "ill enough" to get admitted to a hospital - as if wandering through streets, near-incarceration, and strange visions were not enough

• Five hospitalizations in one year - 2003 -as we awaited the right meds, and then "permission" to be involved in his recovery

• At last - we "declared him homeless" so he could receive some services. Eight years in a group home - recovery progressed, but two relapses as staff ignored family information about Ben's med compliance

• Then, by 2011, improvement included part-time college success, a part-time job...and then a resulting cut in services as Ben was "doing so well".  Sent to his own apartment with extremely reduced support services. Result? Relapse, including police at his door, near loss of his job (thankfully they saw past the stigma), and 7 more weeks of hospitalization as he refused treatment - and was allowed to.

• Partnership finally resulted in stabilization - and Ben now lives with us. He is back to part-time work and college success, and is now enjoying a social life. But without the medication, he relapses within 2 days. We supervise carefully, twice a day.

Message? Recovery IS possible - with four cornerstones of:

• Medical Treatment

• Purpose

• Structure

• Community/Love

The cost of cutting services, and of cutting out the family support system, is: disaster. Families are helpful - IF they receive education and support. NAMI rocks - especially

Family-to-Family

!