A few years ago, I had the honor of speaking at an event to increase mental illness and suicide awareness, and to built support for an independent film called “Extra Innings.” –
described this way on imdb: “Set against the enchanting backdrop of 1960’s Brooklyn, Extra Innings tell the story of a young man who is caught between pursuing his dream (baseball) and staying devoted to his Syrian Jewish family that is afflicted with mental illness.”
I have stayed in touch with the creator of the film, and last night was honored to be a guest on his podcast. We talked about schizophrenia, family, stigma, support, and so much more.
It did get produced and released – and was winning awards all over the place and set to go to movie theatres…and then Covid hit. We all know all about that. But – the good news is that you can now see it on Amazon Prime. Don’t miss it!
As for the podcast, here’s what Albert had to say:
“The love is pure, but the rest is difficult. I wrote it for families to not feel so alone.” Randye Kaye on what motivated her to write her book chronicling the journey of the development of her son’s mental illness.
Check out this exclusive clip of Extra Innings: Covering All the Bases! This week’s guest was actress and author, Randye Kaye.
Randye Kaye makes her living as an actress. In 2011, she published her memoir Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope, based on her own experience understanding and living with her oldest child’s schizophrenia. She hosts two podcasts: The Life Talk Show and Schizphrenia: Three Moms in the Trenches.
Albert Dabah is a certified life coach and therapist who began his career as a social worker. He founded his video production company, Simba Productions, in 1979, and recently directed and wrote his first feature film, Extra Innings, which is based on his own life.
I’ve often wondered what treating patients with SMI (Serious Mental Illness) is like for medical professionals. I want to know, too, what the intake process is like for clinicians, and whether they feel as frustrated with the system as we family members do. This book answers these questions, and more.
Through it all, author Lynn Nanos, L.I.C.S.W., shows such concern, knowledge, and caring for people like my son Ben (who is diagnosed with paranoid schizophrenia), that I kept wishing she were on the team treating and caring for Ben right now.
I had to sharpen my pencil several times, I underlined so many facts and observations.
Five Shocking Facts
Five things that either stuck with me or surprised me – and, after nine hospitalizations for my son Ben, I thought I knew it all…
Often the “easier-to-manage” psychiatric patients get admitted, instead of those who need the help the most, because they are cheaper and less difficult to manage. Those admitted include “malingerers” who just want to get off the street for “three hots and a cot” and can fake psychosis.
Connecticut (where I live) is one of only three states in the U.S. (along with Maryland and Massachusetts) that do not have laws allowing AOT (Assisted Outpatient Treatment), something that most definitely would benefit my son.
Yes, untreated schizophrenia can increase the incidence of violence. And often, when the voices tell a schizophrenia patient to harm someone, it’s someone they know…and usually love.
Regarding RLC’s (Recovery Learning Communities, often staffed by “peer specialists who endorse the possibility that signs of psychosis are normal”): ” Researchers found no significant benefits…to help the seriously mentally ill population”- of which my son is one. I live in fear of those who would try to “teach” him to get off his meds. And yet the government allows antipsychiatry to infiltrate programs it runs. (Chapter 18)
Why do psychotic people not engage in treatment? Nanos lists 17 reasons, and “stigma” was not among them. She argues (backed up by research) that stigma is overrated as a reason to not seek treatment for the seriously mentally ill. She says not one patient has ever mentioned that as a barrier to seeking help.
Mindy Greiling and I have many things in common, though we’ve never met. The biggest shared experience: we both have sons with schizophrenia, and we haven’t given up on them. As she says in the epilogue of her new book, we are “the best mothers we can be.”
As any parent knows, good parenting is a shifting balance between stepping in and letting go. When mental illness and substance abuse enter the picture, that balance is ever more precarious. And “happy endings” are, often, only fleeting respites from trauma, until the next chapter begins.
Still, we love.
Still, we hope.
Still, we fight.
Mindy, for much of this memoir, is able to channel much of this fight into her work as Minnesota State Representative – a position she held for twenty years, advocating tirelessly for improvements to the mental health laws in that state. She’s received more than eighty awards for her legislative and advocacy work. She has so much good reason to be proud.
But her son, Jim, still has schizophrenia. That, as we know all too well, sucks. And in this memoir she is raw, real, and informative about her family’s journey, and also her work to enact changes in the system.
I highly recommend this memoir for anyone who wants to know more not only about the family experience with schizophrenia, but also why it can be such a long and difficult process to change the legal barriers to getting our loved ones the help they so desperately need (but think they don’t).
When I wrote Ben Behind His Voices almost ten (!!) years ago, there were very few memoirs about the family experience with schizophrenia- and even few that offered any hope or action steps. Since then, I’ve seen (and read) quite a few – and this one stands out for its honesty, its perspective (Mindy is the granddaughter of, as well as mother of, someone with schizophrenia), and its knowledge about advocacy and the way things work in the world of state legislation.
Mindy Greiling is a fine writer – you’ll keep turning the pages. You’ll feel less alone, if you share this issue. And you’ll get a really accurate ride on the roller coaster of family experience with “recovery” – what happens after someone with severe mental illness is treated and released? I know this ride all too well – am on it right now, as my son Ben is nearing the end of a three-month hospitalization after nine years of relative success.
“This Brain Awareness Week, we share Randye Kaye’s story – she is a mother of a son affected by schizophrenia. In her search for understanding and raising awareness of mental illness, Randye spoke with Dr Michael Sand, a Medic and Senior Clinical Program Leader CNS at Boehringer Ingelheim to discuss what is important for future brain research. They also shared insights into how they are personally connected to mental illness.”
I keep thinking of the line in a Phil Ochs (google him:) ) song:
There but for fortune go you or I…
This book is a painful reminder of how fortunate we are to have gotten some extra time with Ben – and of how schizophrenia can happen to any family – rich, poor, educated or not, you name the adjectives. Schizophrenia does not discriminate.
Every family member with courage to share their story about mental illness in a loved one opens the door of understanding just a bit more – and that can help reduce stigma and spark action to help those with mental illness and their families. The author begins with the fact of Aaron’s suicide, so we know where this is headed and yet we still root for Aaron – and his Mom, Dad, sister and stepdad – to get the support, education, and understanding needed to change the outcome we know is inevitable.
Alas, that doesn’t happen – but Ingrid Blaufarb Hughes opens her heart to us as we share in her confusion, frustration and helplessness in the face of a devastating illness that seems to steal the soul of someone you love.
The pearl in the oyster here is the love the family has for Aaron, and how they do their best to support him in the only ways they know how, even though he consistently refuses the medication that might have changed his life.
I know that love well, as it is what keeps our family going too – and we know we are fortunate that my son Ben follows the “house rules” of taking his medication each day, under our supervision. Any day he could choose not to (as he, like Aaron, doesn’t think he needs it) – and we have seen too many times where that would lead us: straight to the hospital, and down the chute to square one again. This book renewed my gratitude for the extra days we have gotten with Ben – days that this author’s family was denied. Her pain and love, and her struggle to also live her own life as writer, wife and mother – are honestly told.
It also reminds us of the importance of education, support and acceptance – the earlier the better. Could Aaron have been saved? I don’t know. But I know I am so grateful (thank you, NAMI Family-to-Family) for education I got into Ben’s illness, which equipped our family to do more to help. It doesn’t always “work”, but education increases the odds of success.
Sometimes I open an e-mail from a reader that not only touches me, but teaches me…and these words, from the sibling of a man with schizophrenia, are in my heart forever. The author has granted permission to reprint his words here, for which I am so grateful – and hope you will feel the same way. I have changed the first names, and added some links, but otherwise this is, verbatim, what has re-inspired me today to continue to seek, and see, the strength courage and beauty in my son Ben. Thank you.
I am writing to thank you for your strong and beautiful book Ben Behind His Voices. I did not want to read it. I borrowed it from a friend almost two years ago and have been walking past it since then. And I can’t exactly say it was light reading once I cracked it open. Ben’s story is so much like my brother John’s. But, with John now 54 and myself 58, it was high time to rewalk the path and get some new perspective. I simply cannot thank you enough for your clear and detailed depiction of your family’s journey.
You do an especially fine job of explaining that tension between trying to help and trying to let be. Also, you truly help readers understand that realization that for a person with schizophrenia, life dreams and plans will need to undergo revision. As Robert Frost’s poem “The Ovenbird” reminds us, the question that needs continually to be asked, about all our lives, is, “What to make of a diminished thing?” One could view the question as pessimistic, but to ask it honestly is actually an exercise in wisdom and courage.
Even though John cannot “compete” for standard definitions of success, he puts most of us to shame in a few specific areas. One is courage. A few Aprils ago I remarked to him on the phone what a gorgeous spring day it had been. He said yes, that he had been out too. He said that he had forced himself to let the bus home go on without him so he could sit out on a bench until the next bus came. “It was hard,” he said, “but I did it.” It was hard? To sit on a bench for 30 minutes on a beautiful spring day? It’s a reminder that, for John, facing the world most days takes the courage of a first responder running into a burning building. But as you so clearly point out, his heroism is not the type to garner honor, gratitude, or even acceptance.
Yet I could speak of HIS acceptance of others, his sensitivity to those who are suffering, his spontaneous generosity.
We talk on the phone a couple times a week. He lives about 90 minutes from me. Yesterday we spoke for about 20 minutes. With your words so fresh in my mind, I was somehow able to enjoy the conversation more deeply. It was one of those moments you talk about that should be cherished for the simple pleasure that it is. Your book did that for me.
I am saying a prayer for Ben.
I love hearing from you, dear readers. Thank you for your e-mails, your comments, and your advocacy – RK
Will write more about this later , as I am in Buffalo, NY, getting ready to provide keynote to help NAMI Buffalo/Erie county celebrate its 30th year…but wanted to share one of the interviews about the results of a new survey showing that caregivers of those with schizophrenia do better with more support, more resources, and less stigma. Thanks!
Yesterday I was alone with Ben all day. Huge snowstorm, hubby away in California, daughter and her husband in their own apartment, driveway covered with a foot of snow. Ten years ago this would have been a recipe for all sorts of disaster: frustration, loneliness, trepidation. Instead, thanks to treatment which includes medication as well as the other cornerstones of recovery (community, purpose, structure), I was actually glad to have Ben’s company. Here is what happened:
Ben helped me shovel the driveway – I mean really helped, as in he did 75% of the work.
Ben cooked us a delicious homemade pizza for dinner.
We watched an animated movie – well, parts of it – during the required “watchful time” after he takes his meds.
Any parent of someone with schizophrenia will tell you that this is a day to be grateful for – and I am, believe me. No, life isn’t perfect, and I still wish for the magic wand (or, more to the point, better research and treatment options), but still I know a good day when we see one.
I’m also thrilled that the book still reaches people, two+ years after publication. Although there have been a few changes in our situation since then (two more relapses, a disastrous foray into “independent living” for Ben resulting in our current living situation where he is at home with us, -with a roommate to boot-, and both a part-time job and more college credits earned), the story of our “journey from chaos to hope” remains relevant- at least according to the readers who have written to me. I am so grateful for the feedback, and the chance to share that continues with each reader (or listener to the audiobook).
1 -“I will probably be listening to the CD over and over again for many years. Gives me comfort and courage to deal with my family member. Thank you so much Randye”
2 -“As a person with schizophrenia, I have never seen the journey through mental illness from the viewpoint of a parent. This book made me think, laugh, cry, and many other emotions. I related in many ways to Ben and saw my own mother in Randye. More people, in varying situations, need to read this eye-opening book.”
3- “I am so grateful to the author who shares her story to educate and to enlighten those of us who are taking our first steps out of the chaos”also came across this one, though it was in the form of a comment on another blog, and I can’t find the author’s page…(ah, Google Alerts)…
“Ben Behind His Voices is surely an inspirational tale a few family’s encounter with schizophrenia. The main target of Randye Kaye’s book is on her son Ben, who struggled for lots of years with psychological well being and compound abuse matters until finally he was as a final point the right way identified with paranoid schizophrenia. Kaye leads her visitors with the family’s very difficult activities using this ailment and their journey toward restoration and acceptance. This book may be a good source for people with schizophrenia and their families. In addition, it serves as the formidable reminder to psychological well being experts to treat men and women influenced with all the ailment with dignity and compassion.”
I hate schizophrenia because it prevents Ben from moving ahead with his life. It gets in the way of every job he applies for, every friend he tries to make, every dream he has had so far of having a girlfriend, getting married, being a Dad. It forces him to be dependent on medication that he does not believe he needs. It puts him in a position that he knows is a drain on the family. Schizophrenia steals – even when treated to the best of current medicine’s abilities. Continue reading “Making Money Off My Son’s Illness”? A response→
Sometimes we say things, and they stick. Ever have someone repeat back to you something you said which touched them, even changed them, and you had no idea you’d said it? That’s how interviews are sometimes.
Two years after Ben Behind His Voiceswas published, I still get the chance to spread the message of our story, and for that I am grateful. I feel like the book’s journey has just begun, and though I plan an updated version sometime in the next year to include the latest developments, many tell me that the story is timeless to them, as it reflects where their family is right now in the mental illness journey – or where they hope to be. Others simply like its message of resilience, strength, and hope – regardless of the cause of the challenge.
Tomorrow night I look forward to a book-reading and Q/A at Plainville Public Library in CT.
Here is Lisa Capobianco’s story about it in the Plainville Observer, including the quotes I’d forgotten I’d said – to which I added my own italics…
Author to share story of coping with son’s mental illness
November 8, 2013
By LISA CAPOBIANCO
When national voice talent and actress Randye Kaye noticed her 15-year-old son Ben experiencing mood swings, frustration, and isolation, she thought he was going through a phase as a teenager. But as Ben transitioned into early adulthood, his symptoms worsened, and little did Kaye know that he was exhibiting symptoms of gradual on-set schizophrenia.
“This was beyond what I expected,” said Kaye, a former host of a morning radio talk show in Connecticut. “I did not know anything about it—I really had to learn and explore.”
Schizophrenia affects 2.4 million American adults age 18 and older, according to the National Alliance on Mental Illness. NAMI reports that schizophrenia, marked by changes in brain chemistry and structure, may inhibit an individual’s ability to think clearly, to make decisions, and to manage emotions. Individuals with schizophrenia may also exhibit hallucinations as well as delusions, and may have a difficult time performing complex memory tasks.
For Ben, he began experiencing delusions at age 17 when he decided to drop out of high school without a realistic plan, and started smoking marijuana. Struggling to find help for Ben as doctors misdiagnosed her son’s illness, several years passed before finding the right medication. Ben was diagnosed with schizophrenia at the age of 20.
“I learned to have empathy for my son and how I could help him”, said Kaye, who also serves as a teacher and advocate of NAMI. “When you lose a child to mental illness, it is like he disappears.”