Tag Archives: schizophrenia symptoms

Channeling Grief and Anger into Advocacy and Acceptance

Mimi Feldman, Mindy Greiling and I have been co-hosting our podcast, Schizophrenia: Three Moms in the Trenches, for almost a year now. Our 32nd episode this week has garnered more YouTube viewings in its first two days than any other so far, and guest Jerri Clark, our ” Fourth Mom in the Trenches” for this episode, is the reason.

If you want to know more, please subscribe to the podcast on itunes or wherever you get your podcasts, and/or on YouTube.  Our facebook page is @schizophrenia3moms.

Here are some of the notes:

What if: the mental health system would pay more attention, take more steps to help , before tragedy, violence, or crime finally calls attention to symptoms of SMI (serious mental illness)?

What if Darrell Brooks (charged with murder after plowing his mother’s car into a parade in Wisconsin) had been helped, and treated, instead of ignored or imprisoned? His mother, Dawn Woods, wrote a letter to the media. She, too, is a “mom in the trenches”. So is journalist/advocate/mindfulness coach Jerri Clark, our guest for this episode.

What if Jerri’s son Calvin had received treatment, despite his “civil right ”to refuse it – although the refusal itself is a symptom of his illness?

She says: 

 “I watched my son delivered into society’s underbelly by design. He spent months homeless, met law enforcement again and again, and tried multiple times to die. These traumas are part of a tragic inventory of the requirements for public assistance when someone has a serious mental illness”

Schizophrenia: Nearly Everyone is a “Long-Hauler”

The scariest thing about Covid-19, once you’ve been lucky enough to survive it, is a set of residual symptoms that are still being discovered. I’ve heard everything from “it’s a year later and I still can’t taste my food” to “I still get winded six months later and can barely walk up a flight of stairs” to stories of teeth suddenly and mysteriously falling out months after recovery.

We Need a Cure

People experiencing symptoms like these are called Covid long-haulers. There are Facebook pages and groups where stories and support are available.

But my son, Ben, and others like him? Schizophrenia long-haulers. This is the brain illness that just keeps on “giving” – challenges, changes, symptoms, side effects, loss.

This illness never quits. The residual symptoms sure do beat the active symptoms like psychosis and crisis, but they are still hard to bear.

Everyone is a long-hauler with this brain disease.

We need a cure.

My son is doing okay – actually better than expected – on Haldol now. This older antipsychotic frightens me, because side effects like tardive dyskinesia can be irreversible. Also, it is not known to work on the “negative” symptoms of schizophrenia (things the illness takes away from the person, like ability to feel joy). Still -it’s not too bad.

Some good news: (must mention, Ben no longer lives with us, so some of this may be due to the excellent staff at his group home, and a life less dependent upon our family role as landlords etc)

  • I can converse with him. Actual give-and-take conversation.
  • We have actually watched an entire movie together.
  • He eats my cooking again, after years of saying “smells great, I’ll have some tomorrow” (I think he had some sort of belief about my food that prevented him from ever taking a bite in those years).
  • He has also gone swimming again, and plays beautifully with his nieces and nephews. In fact, they have a relationship with “Uncle Ben” for the first time in years.
  • Haldol is available as an LAI (long-acting injectable) , so Ben isn’t faced with a daily decision as to whether he “needs” antipsychotic meds or not.

But, some of the sadder news:

  • I do see some trembling in his hands now. Would he ever be able to work as a waiter again, the job that kept him afloat before Covid closed restaurants?
  • He is suspicious of doctors, dentists and any medical testing. This is fairly new. He will not have his teeth cleaned.
  • When he isn’t hyper- focused on something I see the eyes darting around the room again, and wonder what he hears and/or sees. He will NOT talk about this, or admit to it.
  • He talks once again about unrealistic plans – like opening his own restaurant, becoming a college professor.

This illness never quits. The residual symptoms sure do beat the active symptoms like psychosis and crisis, but they are still hard to bear.

Everyone is a long-hauler with this brain disease.

We need a cure.

Hope for “Normal” Days Springs Eternal

“Mom, I sometimes I thought I’d never actually have a pleasant day with Ben again. Today was so great!”

Exactly my sentiments, honey.

Families of those with Schizophrenia know:  “normal” days are miraculous. And we treasure. Every. Single. One.  Because, well, we might not get more of the same. no guarantees.

flower blooms in cement
Hope springs…and sustains

Blog followers here know that we’ve had quite a few, um, adjustments to make re Ben in 2020-21. From full-time employment to hospitalization, to back in group home care…and now, addiction to contend with. It has been a tough year for us, sure — but so much worse for Ben, especially now that he is “well” enough to realize that his life has gotten so messed up.

He has lost so much.

Stupid Schizophrenia. Thief of lives.  Robber of relationship. Obstacle to useful employment. And so much more.

And yet. There is hope – and moments to treasure again. Grateful, grateful for:

Ben, 25 days clean now. (his addiction is marijuana). One day at a time. He is going to meetings. Fingers crossed. But – wow – it is so different when he isn’t stoned.

Two days in a row of family fun – yes, fun! Ben is on Haldol now – not my favorite, as I fear the permanent side effects, but Ben seems happier on it. Letting go of control…as best I can. It’s his life. But I must say that things are better than expected, even though Haldol doesn’t do much for the “negative symptoms” of his brain illness.

But  – some miracles in the past few days, on family visits:

He went swimming! He used to love it so much as a boy, but for some reason hasn’t gone in the pool for five years (I suspect some sort of psychosis belief that kept him away, but I’ll never know for sure) -it was always, “Maybe next tiem” – but he went swimming with his young nieces and nephew, and actually played with them. Played!

We did a family trip to the local Aquarium and Ben was actually helpful – the kids adore him, and he was present and involved.  And – during lunch, he turned to his sister (as the kids were doing their “I-haven’t-been-to-a-restaurant-since-Covid- and-forgot-how to-behave” routine) and said, “wow, sis, you have your hands full, don’t you?”



If you have a relative with SZ, you know what a miracle this is.

Continue reading Hope for “Normal” Days Springs Eternal

Oprah, Harry, and Schizophrenia: The “Me” My Son Still Can’t See

The Me You Can't See Photo
The Me You Can’t See

Have you seen the new docuseries on AppleTV+, “The Me You Can’t See”

First of all, thank you, Oprah and Prince Harry, for joining the ranks of advocates who are becoming more open, honest, transparent about mental health issues, barriers, and some solutions. In this 5-part series, people from celebs (like Lady Gaga to the Prince himself)  to “regular folk” talk about trauma, challenges, heartbreak, and where they are now.

This is brave. This is eye-opening. This will help some folks, diagnosed with mental health issues (or those who know, treat, or love them) to understand and know they aren’t alone.

Thank you.

And yet. 

Does it go far enough? 

I am hoping for a second series, where more illnesses are explored, uncovered. Especially schizophrenia in those who have yet to be aware that they have the illness.

As we’ve covered often in our podcast, Schizophrenia: Three Moms in the Trenches, and in the books and blogs we share, one of the hardest things about schizophrenia is that the first step often can’t be taken: the step of awareness. Anosognosia is the condition that keeps Ben, and countless others like him, shielded from that awareness – and from accepting treatment unless somehow coerced into it (even by love).

Oprah and Harry – next time – and I do hope there will be a next time – please talk to the families of those affected by severe mental illness.

This is the episode I’m waiting to see: the person diagnosed with schizophrenia who has yet to be aware of it. Along with the family members who still love them and feel powerless to help.

We cry, we fiercely guard, we coerce, we lose sleep, we go broke.

Continue reading Oprah, Harry, and Schizophrenia: The “Me” My Son Still Can’t See

Update: Two More Years into Schizophrenia Journey

snow...like the symptoms that can coat Ben's thoughts
snow…like the symptoms that can coat Ben’s thoughts

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).
Truly honored and grateful…all of a sudden, three new 5-star reviews for Ben Behind his Voices: 
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.”

You have truly made my day, readers. THANKS!

Radio Interview: “We All Got Issues” Show

What’s going on now? Why doesn’t Ben “accept” his illness? What tips help families like ours to cope? Latest interview aired today,  September 23, 2013:

What is life like with a family member who has schizophrenia?  During this episode of the “We All Got Issues” show – schizophrenia is the ISSUE.  Dr. Glenda interviews Randye Kaye, the mother of a son with schizophrenia.  Randye is also the author of “Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope”.

Here is the show – starting with the song “The Climb” setting the tone.  Dr. Glenda Clare is an empathetic, knowledgeable interviewer.


Family Trip to Maine, as Schizophrenia Develops: Flashback, 2001

Dear Reader:

BBHV audiobookcover
earlier drafts…

The first draft of Ben Behind His Voices was a full 100 pages longer than the draft that eventually got published.  Once in a while, I plan to post some of the “lost” passages that wound up on the writer’s version of the cutting room floor.

This chapter describes a trip that I took with Ben and Ali, right after Ben returned from his period out West which began with great promise (and success at becoming pot-free), morphed into homelessness, and eventually got him back home  for treatment.  At this point in the story, we still didn’t know for sure what kind of mental illness Ben had. Even now, we are the observers of symptoms, always watchful for their return, always hopeful they will not, or that they can be explained away by something other than the illness.



Here is what happened:

“We took a weekend trip to Maine, just the three of us, right after Ben had finished his summer at the day camp. But Ben was acting very strangely again.

He had his backpack with him, always.  Forty pounds of spiral notebooks he just couldn’t leave behind – even if we were going to the beach, or walking near the sea cliffs.

He talked often, but not of ordinary things. His favorite topic that weekend was bragging to us about his “psychic powers.”  Often, he looked at me or Ali and said “I know exactly what you’re thinking. I can read your mind.”

The first few times, we played along.  He was never right, but would say that we were simply lying, that he must know more about what is in our minds than we did.

The three of us went to see a production of Joseph and the Amazing Technicolor Dreamcoat at the Ogunquit playhouse.  Ben, however, often seemed distracted.  We caught him “watching” the show with his eyes completely closed.  He looked as if he were trying to go into a trance. Continue reading Family Trip to Maine, as Schizophrenia Develops: Flashback, 2001

Schizophrenia and Social Security Benefits

Where to Start?

When we began the process for Ben to qualify for Social Security Disability benefits, I was overwhelmed by confusion, options, paperwork….and had very little idea how to begin, much less proceed. I welcome a guest blogger today, Ram Meyyappan, who has written this about Social Security Disability Help. If you have questions, you can contact him at ram@ssd-help.org



Here is his article:

Applying for Social Security Disability Benefits with Schizophrenia

The Social Security Administration (SSA) recognizes Schizophrenia as a condition that qualifies for monthly disability payments. In order to be found eligible for either one of the disability programs you must show that despite following prescribed treatments your disease still prevents you from working.

Disability Programs

The SSA administers two different disability programs: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) benefits.

Basic eligibility for either program requires:

  • you suffer from a debilitating and formally diagnosed medical condition that has been present for at least 12 months, or which is expected to last at least that long, or which is terminal.


  • your condition prevents you from maintaining gainful employment in any field for which you would otherwise be qualified.

In order to qualify for SSDI, you must have a strong work history during which you paid FICA taxes. SSI does not take your work history into account. It is a needs-based program for people with limited income and assets. For more specific information on the requirements for SSI and SSDI, visit: http://www.ssa.gov/disability/

Meeting the Disability Listing for Schizophrenia Continue reading Schizophrenia and Social Security Benefits

January First Review: Yes, Childhood Schizophrenia is Real

January First: A Child's Descent into Madness and Her Father's Struggle to Save HerJanuary First: A Child’s Descent into Madness and Her Father’s Struggle to Save Her by Michael Schofield

My rating: 5 of 5 stars

It’s such a mirror reflection of the emotions I went through as the mother of a son with schizophrenia – only my child was in his mid-teens when symptoms began. Jani was only – well, in hindsight for this loving, confused family, she was a newborn when her “differences” became apparent.

But, like our family, the Schofields thought, and hoped, that love – and disciplined, creative parenting – might just “fix” the problem. Not the case if your child has schizophrenia, trust me – and not easy to accept for either parent.

This is a highly readable, honest, raw memoir of the grasping at the straws of hope that we go through to find our how we can help our children. And, eventually, that we can’t do it alone. Then, we have to find the right people to fill out the team. This, as you’ll read, is a long journey.

Many had thought “childhood-onset schizophrenia” was not a real thing. It is. Oh, it is. And this family, like ours, has worked tirelessly to get through the maze, guided by love and hope.

Randye Kaye, author “Ben Behind His Voices”

View all my reviews

More than just Meds: Recovery Reminders

It can be so easy to get used to success, then to keep wishing for that higher bar.  I’ve read that it’s a human to forget extreme physical pain – otherwise why choose another bout with labor and childbirth? – but what about the emotional pain attached to crisis periods in mental illness?

All it takes is one gentle reminder and the feeling of stress comes running back in.

We’ve had, now, almost five months of stability with Ben, ever since the family stepped in to “help” his official care team.  He is blossoming once again after a painful summer reminder that without the right medical treatment as the cornerstone of recovery, the house built upon that foundation can crumble like a house of cards.

Watch for Effects of Change

These days, it’s almost easy to forget that Ben has schizophrenia. He just went to his first-ever employee Holiday party, which means he is valuable enough to his company to have lasted this long, even into the off-season. His job has provided so much for him: purpose, community, focus, and a paycheck.  He has something to talk about when someone asks, “so, what do you do?” He loves his job and feels like a person again.

His two college courses, too, have been a source of purpose, structure, and pride. What I wouldn’t have given, over a decade ago as his illness was developing, to have heard this from one of his teachers:

“Ben, you did your work with dedication and care for details, you contributed to the class with intelligent questions, comments, and a great sense of humor… You are an A+ student, and your final grade for this class is a well deserved A. It was a true pleasure having you on my class. I hope I’ll have the fortune of having students like yourself in my classes in the future.”

Wow – yes, I am serious. Those are the comments from one of his professors!

That almost makes us forget that, five months ago, Ben was wandering the halls of a psych unit, talking to the voices he never admits to hearing. Continue reading More than just Meds: Recovery Reminders