Ben Behind His Voices Blog

One Family’s Journey from the Chaos of Schizophrenia to Hope

NEW!– the Ben Behind His Voices audiobook has been updated with a new intro, epilogue, and bonus material! – available only in audiobook form. (updated 2022)

Hear all of the original award-nominated memoir, and find out what has happened in the decade since. We continue our journey through crisis, help, and into hope.

Schizophrenia: 3 Moms in the Trenches Podcast

In recent posts, I reviewed two new memoirs from fellow MRQs (Moms who Refuse to Quit) Miriam "Mimi" Feldman and Mindy Greiling. Both memoirs were recently released (unfortunately forced by the pandemic into virtual-only book tours), and are both stellar and unique.

audio podcast or YouTube video

So - we met each other (virtually, of course - what else could we do?) and have teamed up to create a new podcast/youtube show for Moms like us - and also for other caregivers, practitioners, family members, and those (like our sons) who are diagnosed with schizophrenia - if they are in a place to want to hear about our side of the story.

Ben would not care to watch this, I know, as he still lacks insight into his illness (anosognosia) - but our hope is that the content is there for whomever is ready to hear it.

Here is the description:

Three Moms in the Trenches: (East, West, and Mid-US). We each have adult sons with schizophrenia and have written acclaimed books about it. We say it like it is, to help families, practitioners and those with SMI (serious mental illness) feel less alone...and learn. Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”) Miriam Feldman - Artist, Mom, Author "He Came in With It" Mindy Greiling - member of the Minnesota House of Representatives for twenty years. Activist, Legislator, Author (“Fix What You Can")

Podcast can be found here:

YouTube  (please subscribe to be informed as each weekly episode comes out!

Thanks!

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He Came in with It: Book Review

Miriam Feldman's wonderful book will be released tomorrow, and I highly recommend it.

Ever since my book was released (when there were very few memoirs around that dealt with schizophrenia in a child) they now seem to be everywhere.  I have read many of them, and Miriam's memoir stands out as not only relatable (I marked so many passages I almost ran out of ink) but also poetic, artistic, and funny. Miriam is an artist (murals and more) by trade, and her artistry definitely extends to the written word.

Plus she made me laugh out loud - something you wouldn't think you can do when your heart is broken by a devastating, unrelenting illness thrust upon your  beloved child.  But you can, and we must. 

Miriam Feldman takes us through  the facts,  the loneliness, the strength, the love, and the roller coaster of hope and heartbreak.

You will fall in love with her son Nick, and grieve the loss of what might have been...and hope for what might be. As I do every day with my son Ben.

I felt such a kinship with Miriam that I interviewed her (and Robert Kolker, and Laura Pogliano) as part of my "Power of Kinship" conversations. 

Hope you'll read this book!

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Beyond Hidden Valley Road: Is There Now More Hope for Schizophrenia?

What a panel! I got to interview 3 schizophrenia experts at once :

Robert Kolker, #1 NYTimes Best-selling author of Hidden Valley Road - also one of the rare non-fiction Oprah book Club selections

Miriam Feldman, author of He Came in with It, publication date July 21

and Laura Pogliano, SARDAA Chapter President and Board member, mom of late son Zaccaria, who was diagnosed with schizophrenia at age 17.

We cover, among other things:

What, if anything, has changed for families dealing with schizophrenia - and what has to happen next to improve the current situation? We touch on: Early Detection and Treatment Need to fund and advance research and find a CURE Four Pillars of Recovery Stigma - is reducing stigma enough? (no!) Schizophrenia as a brain condition, not a psychological issue the sibling experience Hidden Valley Road and the Galvin family current disabled mental health system need for education, NAMI Family-to-Family ...and more.

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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?

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.

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