Tag Archives: Ben Behind His Voices

Five Months a Patient (Psychiatric Unit): Daring to Hope Again

Hope or Desperation?

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. 

Continue reading Five Months a Patient (Psychiatric Unit): Daring to Hope Again

Noah’s Schizophrenia: Review

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.

 

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!

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.

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?
  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.

Partnering with Researchers for Brain Awareness Week 2018

“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.”

You can view the story here!

Schizophrenia and the Family: Exhausted, Broke, Helpless and Blamed

It isn’t easy, loving someone with schizophrenia.

Well, let me rephrase: Loving is easy. Loving is in our soul.

Liking? Sometimes much harder.

Caring for? Protecting? Supporting? Very very hard.

Families Hanging by a Thread

Families who have not abandoned their loved ones with schizophrenia (and many, unsupported and at the ends of their ropes, feel they have no other choice) are left holding so many loose ends it’s easy to feel hopelessly tangled up all the time. And that’s on a good day. On a bad day? We live in fear.

We fear – for our loved one’s life, sometimes for our own lives. And it often feels like there is nowhere to turn.

As for us – well, as of this writing, we’re still one of the lucky families. After eight hospitalizations, after seven years in a group home, after homelessness and arrests, our son Ben is back home with us and stable on medication. Well, for today at least. We take it a day at a time, and each day we get that passes without major crisis feels like a gift – a gift that could get ripped away at any time.

I often speak to groups about the Four Pillars of Recovery Success that have enabled Ben to rebuild his life after his periods of psychiatric care: Treatment, Purpose, Structure and Love. Yep: he has a job right now, and a free place to live (with us), and a social life.  Yay. I know what a miracle that is. But, as I’ve written before, that success is precarious. If one of those pillars should crack, we could be back at Ground Zero in the blink of an eye.

Still one of my most popular posts, here and on HealthyPlace.com , is this one:

Schizophrenia and Parenting: Step In or Let Go?

Though six years have passed since I wrote it, it still gets comments. And in those comments I am reminded of the deep, mournful, and sometimes terrifying challenges families – and parents specifically –  face when schizophrenia moves in. Continue reading Schizophrenia and the Family: Exhausted, Broke, Helpless and Blamed

What Exactly is Schizophrenia, Anyway?

I often get this question, even years after our family’s openness about Ben’s mental illness.Education is Power

Recently I came across this guide from Juno Medical, and it explains it all really well!

 

 

 

Here is an excerpt:

What is schizophrenia?

The word “schizophrenia” derives from the Greek “skhizein” (to split) and “phrēn” (mind) and indicates a long-term mental disorder that involves cognitive, behavioural, and emotional dysfunctions.

What are the symptoms?

Symptoms of schizophrenia usually start between ages 16 and 30 and can be divided into positive, negative, and cognitive ones.

Positive symptoms

Positive symptoms refer to an excess or distortion of normal functions.

Hallucinations: hallucinations can involve all 5 senses (hearing, sight, taste, smell, and touch). Hearing voices is the most common type of hallucination in schizophrenia. People with the disorder hear voices that talk to them about their behaviour, give them commands or threaten them or others.

Delusions: delusions involve having a distorted image of what is happening in the reality. Delusions can be persecutory, where people believe that others are trying to harm them or plotting against them, and delusions of reference, where people think that the environment is directly related to them, e.g. they believe they receive special messages through the TV or the radio.

Disorganized speech and behaviour: the person shows incoherent speech that impairs effective communication as well as difficulties in completing basic day-to-day activities. It also includes bizarre or inappropriate behaviour.

Negative symptoms

Negative symptoms refer to a decrease in socialization, motivation, emotional responsiveness, and movement.

Apathy: the person shows lower interest in activities that used to be part of his or her everyday life, such as work, studies, or sport. Personal hygiene and appearance may also suffer noticeably.

Lack of emotion: patients show diminished affective responsiveness or display inappropriate reaction – or no reaction at all – to either good or bad news. People with schizophrenia may also show anhedonia, which defines an inability to experience pleasure.

Poor social functioning: the person avoids contacts with other people and prefers to spend time alone and isolated.

Cognitive symptoms

Cognitive symptoms involve difficulties with memory and concentration.

Disorganized thoughts: schizophrenia sufferers may demonstrate disorganized thinking and difficulties in expressing thoughts or integrating feelings and behaviour.

Difficulty concentrating: the person displays attention deficit and the inability to gather and process information and make decision out of it.

Poor memory: the person will have trouble keeping recently learned information and use it to carry out a task.

  • Hebephrenic schizophrenia: also known as disorganized schizophrenia, this subtype involves incoherent, illogical thoughts and behaviours, and emotional blunting.

want to know more? check it out!

Here is the link to the full guide from Juno Medical.

Many thanks! EDUCATION IS POWER!

 

 

Another Mom’s Story of Schizophrenia in Her Son – and Suicide

Book Review: Losing Aaron

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 Losing Aaron Bookopens 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.

The Precarious Jenga Tower of Life with Mental Illness

Jenga_distortedMy son’s life is a never-ending game of Jenga, carefully constructed by us all and always in danger of toppling – as pieces are removed by too many players jugging too many variables and way too little foresight and funding.

This month has been challenging. Five years after Ben Behind His Voices was released, we are living inside a constructed existence composed almost entirely of Jenga blocks. Ben has climbed his way to full-time employment as a restaurant server, and has even earned kudos on Yelp.

Recently one of his friends, a young man struggling with mental illness issues and also transgender transition, was reported missing (he has since been found, thank goodness) and his family was frantic. She drove to our home to ask for Ben’s help, any info he might share. In the course of our conversation, she revealed that her son had been prescribed medications for his anxiety and depression but had recently refused to take them – and soon after that disappeared. She told Ben that he was an “absolute inspiration” to her son because he takes his meds –  and has held a job he loves for over two years.

What she hadn’t realized is this:

Sure, Ben takes his meds – but he still doesn’t think he needs them. He is “compliant” because it’s a house rule we enforce – by staying up til the wee hours of the morning (Ben helps close the restaurant 5 days a week) to supervise. Could he refuse? Sure. But we would then refuse to allow him to live with us.

I pray we never have to force this issue. We’ve done it before – it is risky and painful to all – and so Ben knows we mean what we say. But the whole “compliance” situation is a jenga block that always sticks out, just waiting to be pulled from the stack. It’s right here on the foundation level. If that one goes, the whole thing topples over.

But even with that foundation intact, each day there are other pieces that hold his life precariously together. This week, four were pulled out — and we hold our breath, as do so many families in similar circumstances, that the structure can still stand. Continue reading The Precarious Jenga Tower of Life with Mental Illness