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.
It has been almost four weeks since I picked Ben up, curbside delivery (not allowed to enter the unit due to Covid) from his over-five-month stay in a “behavioral health center” (AKA psychiatric hospital). He was so full of hope, the day so full of promise – but we family members know to enjoy the moment, and prepare for a fall.
Man, I hate to be right about this. But I knew – I knew – he was on the wrong medication, and it was only a matter of time.
Thursday, Feb 4th – pickup, home to pack, delivery to new housing I’ll call B Home (very very grateful for that arrangement, don’t get me wrong). Ben seems excited and open to his new life.
Friday, Feb 5th – I drop off a few items he forgot, and already Ben seems off. He’s on a time-release injection of Haldol, and wasn’t kept in hospital long enough to observe how to time the next needed dose.I call to inform the psychiatrist via Ben’s case manager (who can ever get the actual doctor on the phone?) and am told he’ll get back to us on Monday. That’s three more days that Ben can deteriorate.
Monday, Feb. 8th – the doctor has done nothing. No oral boosters prescribed, no change in the next injection date. Ben seems not much worse, which is good, I guess – but he is still not good. Families know.
Thursday Feb 11th – I drop off a few shirts to Ben at B Home. He holds it together enough to talk to me through the car window.
Good news: he is wearing a mask.
Bad news: he has gone on a shopping spree for hoodies. He has about 60 hoodies already, folded neatly (by me, while he was hospitalized) on a shelf in his old room.
Man, I hate to be right about this. But I knew – I knew – he was on the wrong medication, and it was only a matter of time.
He is stable (ish), but it’s like the nine years he spent getting off Disability and working up to full-time employment have been erased completely, like an extended version of the plot of Groundhog Day.
We still have not heard a peep from his psychiatrist.
Listen, I want Britney Spears to be happy too. She’s incredibly talented, seems nice, obviously loves her children, and has worked her ass off pretty much all of her life. And, yeah, her dad seems like a controlling asshole. Also, it has to suck to have your adolescence questioned and paraded all over the media. She was not treated with respect, to say the least. The paparazzi and press were shameless in their interference – and, well, sheer gall. Anyone might crack under that kind of pressure and scrutiny.
(Imagine if all Your teenage love starts and fits has been plastered over the tabloids. I mean, Seriously.)
But, after watching Framing Britney Spears(and to channel Carrie Bradshaw), “I couldn’t help but wonder…..” even now, are we getting the whole picture of her conservatorship?
This is not a popular take right now. And I’m not saying that Brit shouldn’t be “set free”. Honestly, it’s none of my business.But, since I am a conservator myself, I’m just saying there might be more to the story. Have we fully seen in that documentary what a conservator can do to help? To avoid disaster? To protect the conservatee? We have not.
Even Brit herself, speaking out after the documentary aired, has said “everybody has their story.”
I applied for conservatorship in 2003 when my son Ben was about to sign papers to “set himself free” from the psychiatric unit in the hospital. He was psychotic, confused, a danger to himself – but would have been released anyway because he had “rights.”
But by applying for conservatorship and right to treatment, I bought him some time – time to stabilize and to plan for discharge.
“Dear Mom, and whoever else may or may not be listening. This goes out to my mom with deep heart-feltedness. For whatever I’ve done in the past, I’m extremely and genuinely sorry for, and will forever be.”
I have this recorded on my iPhone.
Why? Because one of the first things Ben did after I picked him up from West Hills Behavioral Hospital a few days ago was to apologize.I was so shocked I asked him if he’d say that again, into the phone, and make it official. He laughed (laughed!), and said sure.
It was a good moment. I’ve learned to treasure those, since they tend to be fleeting.
I was right. Unfortunately. Shit.
Ben had been in the hospital for over five months this time. It was a nice vacation for us (sounds cruel, but if you e been there you get it), though beneath it all is my mother’s heart that hurts for my son and all he’d lost after losing his full-time restaurant job to the Covid economy. I’d watched the downward slide for months, as he bravely (in my estimation) held on to hope and tried to fill his days with purpose. That’s didn’t go so well. Marijuana use increased, and so did his determination to not take his meds. All kinds of tricks, and we were powerless to do much except supervise, nag, accuse, try to outmaneuver him. It had worked…for awhile.
Now, after the hearings giving us right to treat and commit “over objection”, Ben finally stabilized – but not on the medication that had brought him back to a place where he could work as a restaurant server….and fool people into not knowing he has this devastating brain illness: schizophrenia.
No. Because he “doesn’t like the side effects “ of that medication (and I don’t blame him, but still…), he has chosen (and had the right to) an old antipsychotic, Haldol, which works okay but can have even worse (and permanent) side effects.
Yes, even in the hospital, we can win the right to treat, but not to choose the right medication. He has “rights” , which cause him harm.
One week from today, Ben will be discharged from the longest hospital stay of his life. Five months. Five months! Believe me, I am grateful. Grateful that he was safe, cared for, and somehow has returned from the abyss of his illness. Again.
Not gonna lie, though: we’re also very grateful for having had a break from living with him. What a blessed empty nest. No staying up til 3 AM to make sure he takes his meds. (Up until Covid hit, Ben had worked as a restaurant server, thanks to those meds he hated). No cigarettes on the front porch. No huge messy vegetarian cooking marathons. And, mostly, no tension in the house from secrets kept, delusions hidden, resentments festering.
How, after nine years of success, did Ben wind up at square one, delusional and certifiable? I can blame Covid-19 (see this earlier post) for the job loss, the structure crumbles, the community scattered, his purpose stolen – but, truthfully, he was teetering on the brink of the rabbit hole even before that. Excessive pot use, self-caused financial stress (he leased a Lexus? Really?), and mostly – mostly – resenting and cheeking the medications that provided the foundation for his ability to function in reality. Every night my husband or I could feel the hatred coming from Ben as we supervised his medication he desperately wanted to not need, all his charm having been used up at work and none left for his family.
But there’s only so much you can do if he backwashes into the water and then swears he didn’t.
We got by. We all squeaked by. Until August 29, 2020. Another night spent in the police station, calling the on-call psychiatrist, watching my son disappear before my eyes. Again. Talk about the worst Déjà Vu ever.
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.
Why is Mommy in the hospital? How can a brain be “sick”? Finally, a picture book for children that addresses the most secret of secrets: my parent has a mental illness.
We follow little Imani through her confusion, sadness, loss, and adjustment as her mother reacts to her inner voices (one named Jerry), lashes out at her daughter, goes to the hospital for treatment, and finally returns home, with her illness under control. Through it all, Imani’s father provides support for her.
if you know a young child who is dealing with this in his or her family, this lovely book is a great place to start. It could be the key to opening the conversation we seldom know how to explain.
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.
Another round of uncovering the truths behind the life he’d sworn he was managing well (“it’s none of your business, Mom”). In the five weeks since this latest breakdown, I’ve been unraveling and trying to piece together the strands of the web he’d woven, and all that was caught in it: the mess, the mounting debt, his addiction to marijuana, the car damage, the shopping sprees, the lies.
I am not legally responsible for any of this, but of course I am a mother and each day includes hours of work to talk with Social Security, Medicare, debt collectors, lawyers, banks. I am doing what I can to prevent the final collapse of the life he’d struggled – with adolescent (at best) decision making, to create, the nine years he has lived with us (no rent) and complied with our requirement that he take his meds.
Our nest was supposed to be blissfully empty by now. My husband and I have more than earned it. But this is my child…the baby I birthed and nursed, the child who was always so impatient to give you a present, the big brother who was such a role model and friend to his sister, the student who was a John Hopkins scholar in eighth grade.
How much do you let go before the guilt chokes you? I think I know now. Ben cannot live with us anymore, if he ever gets back to the “almost normal” he had before he took himself off meds. I must turn him over, once again, to “the system” – because I can’t endanger the rest of my family, or my own sanity, anymore.
But how can I divorce my child? Can any parent do that?
Like many memoirs about a mother’s experience with her son’s schizophrenia, this rang true on so many levels. The love, the shock, the despair, the hope, the searching for support…all of us with loved ones struck by the brain illness called schizophrenia will nod our heads in solidarity – the club we never wanted to be in.
What sets this apart is how the author weaves information and resources into the story: read it to understand acronyms and issues such as AOT, CIT, NAMI, Board and Cares, homelessness, drug use, conservatorships, IMD, Clozapine….a primer for the vast education a family needs to cope and help.
For me, this may not have been the easiest read on this day when my own son’s Court Hearing to apply for right to commit and right to medicate is happening in a few hours. I face the difficult decision, as does the author Kartar Diamond so many times in this story, of refusing to let me son move back in with us. Her son Noah cycled through so many forms of alternative housing…what will happen to mine?
In one terrifying and frustrating scene, she shares her thoughts as Noah’s symptoms worsen:
As a small boy, he made a Mother’s Day card that read, “Don’t ever die I love you so much.” Now, 25 years old, suffering from schizophrenia and fueled with crystal meth, he wants to “crush my skull” because I didn’t bring him ten dollars.
Minus the threats, we have been there. As for the threats? Well, you just never know. With treatment, Ben’s sweet nature abounds. When he refuses meds? I don’t know how long before the voices take over.
The author’s son Noah is a talented musician (mine a promising writer, a grim reminder of what this illness steals from the world as well as from the person diagnosed with it and his/her family). This is not sugar-coated at all; it reveals the disparities in the mental health system through the frustrated eyes (and pocketbook) of one mother who loves her son with all her heart, but is left almost helpless by the illness and the system that is supposed to help. It also ends with some hope, and a look at what can happen when the system does work.
I can relate. You, I hope, will too. She searches for “the truth” throughout this book, and all of us hope and pray it can be found.