Category Archives: schizophrenia

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.

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.




“Hearing Voices” Movement…Not For All

As the mother of a beautiful young man who struggles with schizophrenia every day of his life, I am always tempted by magical thinking.  What if Ben’s symptoms could be brought under his control without medication? What is he could somehow manage the hallucinations himself, if he only “understood” their origin?

brain in hands
Our Brain -How Much in Our Control?

Oh, how I wish.

There is a growing movement of those who are doing just that, they say.  I have met a few of them, heard their theories, congratulate them on their success, and wish them every happiness.

My son, however, would be harmed by this  “hearing voices” movement – or, in the US, something called Mad In America. I’m glad it has worked for some – but it is not for everyone.

Susan Inman talks about this in Huffington Post,  Canada:

Many perfectly healthy people have auditory hallucinations. However, auditory hallucinations can also often be part of the chaos of a psychotic illness. In recent years, numerous groups have developed to assist “voice hearers,” as some wish to be called. Unfortunately, most of these groups don’t want to recognize the very different needs of people with severe mental illnesses. Continue reading “Hearing Voices” Movement…Not For All

Schizophrenia and Family: Walking the Tightrope of Recovery

Recovery in mental illness is possible, yes – but is often a tightrope walk for all involved: consumers, family, friends, providers.  To paraphrase Willy Loman in Death of a Salesman, “Respect must be paid.”

This is an excerpt from today’s radio interview with Ray Andrewsen of WQUN AM in Hamden, CT, where he asks me about our family experience as schizophrenia developed in my son Ben.

Next Thursday, June 9, I’m honored to be the keynote speaker for Fellowship Place in New Haven, CT, one of many organizations providing much-needed support and community for those with mental illness. .

Eighth Annual Doctor Albert J. Solnit Memorial Lecture

Advance ticket purchase is required. Tickets are $25.00 each. To purchase tickets, please click on the link on the left or call Melissa Holroyd at 203-401-4227 x111. All proceeds to benefit housing and support services to adults who suffer from chronic mental illness.

more info: Hope to see you there if you can make it!

Fellowship Place to host our 8th Annual Dr. Albert J. Solnit Memorial Lecture: a discussion with  Author Randye Kaye, Thursday June 9, 2011 at 7:00pm, at the Whitney Humanities Center Auditorium of Yale University, 53 Wall Street, New Haven.
Join us for a conversation with Randye Kaye, based on her book “Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope”, to be published by Rowman and Littlefield in September 2011.  Kaye will share with the audience her experiences with her son who suffers from schizophrenia, how mental Illness affects the whole family and how they helped guide him on his recovery journey as he went from 7 hospitalizations to now 4 semesters on the Deans List at his school.
Kaye humanizes the experience of schizophrenia by including Ben’s point of view, through his poetry and other writings, and pays tribute to the courage of anyone who suffers with mental illness
Following the Author’s presentation, Fellowship will host a panel discussion with the audience and a coffee reception. The Panel will include:

  • Daniel M. Koenigsberg, MD, Former Chairman, Dept. of Psychiatry, Hospital of St. Raphael, Associate Clinical Professor, Yale Medical School
  • Selby Jacobs MD, MPH, Former Medical Director, CT Mental Health Center, Professor of Psychiatry, Yale Medical School
  • Allan Atherton: Treasurer, National Alliance on Mental Illness (NAMI) of Elm City, Past President NAMI/CT, Co-Coordinator, NAMI CT Sharing Hope Initiative
  • Randye Kaye, Author: ”Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope”, NAMI Family-to-Family educator, Radio broadcaster: NPR.

Schizophrenia Awareness Day: May 24, 2011

Schizophrenia Awareness Association



The Schizophrenia Awareness Assocation (SAA) in India has declared this day Schizophrenia Awareness Day. Schizophrenia affects one percent of the world’s population. Not just in the United States; this is an international statistic. The Times of India has a wonderful article today, talking about recovery and the need for family and social support. Oh yes. Indeed. One quote: 

“Integration of schizophrenics into the mainstream society and spreading awareness on the mental condition is important for normalcy to return. Isolation should be avoided at all costs.”

Community Matters

Oh, how true this is – and how tested it has become here in our family this week.  Ben has, in the space of one month, continued at his new job (his first job in eight years), finished his six credits in college (final papers and projects), and moved into his own apartment.  That’s a lot of change, and a lot of stress.  So far, so good – almost.

Families who remain involved in their loved ones’ recovery know this: let go as much as you can, and keep your eyes open for signs of relapse.  This is, always, the delicate balance.
So – when Ben moved from a group home (with eight housemates and 24-hour staff support) to a supported studio apartment (with med supervision a four-block walk away, and no community handy) this month, I had my concerns.  Oh, yes.  I do want him to take (and enjoy) responsibility, but as always medication compliance is the foundation upon which this success rests – and, of course, the emotional and social parts of his treatment plan.

Families know the signs of potential relapse, believe me.  In Ben’s case, one day cheeking the meds shows up in his personality: he gets too energetic, tries too hard to engage. His voice goes up in pitch.  I saw this happen this week, so I went in to action: called his new caseworker, visited the weekend staff at the office, and reminded them all: Watch him. He doesn’t want to need you, but he does.  Make sure he takes the meds, and that they stay in his system.  Oh, the tricks he can play.

Today he is back to normal.  Mission accomplished – for now. That was a reminder I’d hoped to never see again: that Ben needs the medication to continue to on this amazing path in recovery.  And, he needs his community: family, friend, providers.  He may never agree that this is so, but for now I will be the watchdog.  Thank goodness he has caseworkers who will take me seriously.

This is a team effort.
More from the article in Times of India:

On bringing the patient back into mainstream society 

* Proper medication, family support, therapy and rehabilitation is important

* Psychotherapy, cognitive behaviour therapy, group therapy and family therapy are required

* Rehabilitation through workshops at support group meetings and at rehabilitation centres is necessary

No matter where you live – this is true. Together we can help each other.

What’s it Like?: 20 Greatest Memoirs in Mental Illness

Another great resource, especially if you’re looking to contribute your experience professionally, and want to get your Masters’ Degree online : Masters in Health Care . This latest blog post also lists the 20 Greatest Memoirs in Mental Illness. Whether you have been diagnosed yourself, are providing services professionally, or as a family member (lots of work, no salary!), getting the insiders’ view is invaluable.

If this were my list, I’d add the following memoirs:

Henry’s Demons
The Day the Voices Stopped
His Bright Light
Beautiful Boy

Someday I hope Ben Behind His Voices will make this list. When it does, I’ll know that its message of hope and its dose of reality will have reached more readers – and that the message will spread.  Guess it’s a bit much to expect to be on here, since the publication date is still a few months away! Want a peek? Amazon has it for you.

Supported Housing: One Giant Leap for Ben

I’d always been under the impression that when Ben was ready to leave his group home, he’d be gradually weaned off the 24-hour staffing to, perhaps, 16 or 12 hours of supervision. But no. Ben’s recent accomplishments, notably lasting six whole weeks at his new job, have forced the issue of getting him “graduated” from supervised housing to the next step. Evidently, there is no middle ground in our state. The next step is living alone. Yes, he qualifies for a med nurse to show up twice a day and carry out doctor’s orders for supervision of meds.  Yes, there is help “if he needs it” in the office a few blocks away.  But still. While I share and applaud Ben’s accomplishments to qualify for this next step, I am also as concerned about this change as I am happy for him.

Tomorrow, he moves. First and last month’s rent? He only has part of it.  Most of his benefits were withdrawn almost as soon as he received that first paycheck.  So guess who has to make up the difference? What do people do who don’t have parents to help them?

Furniture? He needs a bed, a table and chairs, the basics of life.  So much need, so soon, with nothing in the bank to pay for it now. What if he had no family? What do others do? I think we’ll be making daily visits to Goodwill for awhile. Our family has unlimited love to give, but definitely not unlimited funds. Far from it.

Ah, the thrill of the challenge. But finding furniture, and stocking Ben’s fridge, will be the easier part. How do I stay away from the fear: What if it’s too much for him? What if, after seven careful years of building his life back up, this is too much independence, too soon?

What if Ben crashes? I try not to think this way, but it sneaks into my head when I’m not looking.

After seven years with the safety of all-day staffing, Ben will be on his own in so many ways. He is thrilled beyond belief. I am happy for him.  I am, also, scared. I want to believe that his recent accomplishments – doing so well in part-time college classes, landing and keeping this new job, racking up years now of sobriety – are proof that he is really growing up at last, chipping away at the years he lost when his illness was in the forefront.  I will behave as if I have complete faith in his ability to thrive in this new phase.  And maybe – just maybe – it will all work out wonderfully.

Ben has certainly earned this chance to prove himself. There is little I can do now except be happy for him, support his independence, and – between you and me – keep my eyes wide open for signs of relapse, and my arms and heart wide open to love and congratulate him.


Schizophrenia and a “Great Personality” – possible? Yes!

This marks one month of employment for my son Ben.  One full month! He loves his job.  He has an answer when people ask him “What do you do?” The increase in his energy and pride is thrilling. Really. Thrilling.

Do I worry, still? Hmmm. Well, let’s just say I’m keeping my eyes open for signs of stress. And simultaneously trying to stay grateful in each moment. I don’t call Ben to see if he has gotten up in time to go to work – but the thought occurs, several times a day. NAMI has taught me that letting go is part of what parents must do – all parents, actually, but it’s a more intense process when you’ve seen your child led into the mental hospital more than once. Letting go, slowly.  Learning to trust his abilities, slowly.  He has earned it.

Ben said yesterday that his manager told him he was hired because of his “great personality”:  friendly, “good with people.” Wow. What a long road to this place. I know who my son was before the illness (brilliant, charming, loving, funny); I also know how he was when in crisis (mostly unreachable).  To see Ben’s personality re-emerge – tentatively at first but more strongly now – is indescribable.

Schizophrenia and other mental illness symptoms come in two categories: Positive (added to personality) and Negative (taken away from the personality).  The latter is as heartbreaking as the former.
Ben’s current state of recovery is, I hope, inspiring; still, I know it would change in two days if treatment should stop.  So much more research is needed.So much more. For so many, like Ben, are waiting to come out from behind their voices.

Negative symptoms can be helped by certain medications. They can also sometimes respond to the other vital areas of treatment: community, love, purpose, patience, and the proper balance between challenge and reality. According to, a short summary of a list of negative symptoms are:

  1. lack of emotion – the inability to enjoy regular activities (visiting with friends, etc.) as much as before
  2. Low energy – the person tends to sit around and sleep much more than normal
  3. lack of interest in life, low motivation
  4. Affective flattening – a blank, blunted facial expression or less lively facial movements, flat voice (lack of normal intonations and variance) or physical movements.
  5. Alogia (difficulty or inability to speak)
  6. Inappropriate social skills or lack of interest or ability to socialize with other people
  7. Inability to make friends or keep friends, or not caring to have friends
  8. Social isolation – person spends most of the day alone or only with close family

NAMI Family-To-Family: Happy 20th Anniversary

My son Ben is two weeks into a job. An actual job, with paychecks and everything. And by “everything”, I mean a reduction in benefits which almost wipes out the money he’s earning…but that’s another story. The main thing is that Ben is earning this money, and that feels completely different to him. The change in his self-esteem is astonishing. He has something to say when people ask him, “So what do you do?”
As the publication date of Ben Behind His Voices approaches,  I find myself thrilled that its launch will coincide with the 20th Anniversary of NAMI’s Family-to-Family Program, because that is the course that saved my family by teaching me what I needed to know to cope with my son’s mental illness. NAMI helped me, and then I had the tools and the support to help my family – including, eventually, my son.
In January of 2002, I walked into my first F2F meeting – and I walked out completely changed. Although NAMI support groups had thrown me my first lifeline out of the hellish confusion of my son’s symptoms, I needed more. F2F was different from the support meetings in that it was a structured, once-a-week, course that was more educational in nature. In twelve weeks, I could learn about mental illness and its effect on the entire family, including the person who suffered from the illness.  This was taught by other family members who were trained by NAMI to implement the course. And – it was free.  All that was required was the commitment to attend all twelve classes, one evening a week, for 2 ½ hours each class.
What did I get?

Clarity can bring many other things along with it: Understanding. Mourning. Hope. Anger. Grief. Bonding.
This, I think, was a clearing of my future path to acceptance and action.  It was a start, and a glimpse.  Without this knowledge, I might very well still be fumbling blindfolded through the woods. Sometimes I still am – but since F2F, I always have an idea how to find the path once again.

The brilliant curriculum of F2F was designed by Joyce Burland, Ph.D a clinical psychologist whose experiences of coping with schizophrenia in her own family over two generations have deeply influenced her understanding of family trauma in mental illness.
This was a program written by someone who had been there, who had stumbled through her own journey as the mother of someone with a mental illness. Dr. Burland’s idea to educate the families in similar situations had initially been met with disbelief. Countless professionals said: “What do families need all that information for?” But she knew better, and persevered.  And now, the program has grown and keeps growing. 
Without revealing too much about the materials, which really must be experienced in the group setting that helps make it so affecting and valuable, I will tell you that there were many flashes of insight and realization that began to reshape my perspective. This process was not always easy.  In fact, it was never easy.  Most of that clarity came at a cost. Understanding teamed up with guilt.  Information came along with fear.  Changing my vision of the future brought anger and grief.
A lot of it was hard – very hard. But at least it was real. And I discovered that I was not the only one dealing with these issues, having these feelings.

Family-to-Family’s greatest gift was this: I stopped hating my son.  I learned new ways to cope, new ways to communicate with Ben. The course took us from painful realization to empathy for our relative’s experience and the hope that our families could someday absorb these new truths and progress to acceptance and advocacy.  But the only way to the final stages of emotional response was through the pain.  No shortcuts to the stage of acceptance.
There was so much I had learned. And still so much I didn’t know.
But now, armed with all this new and overwhelming information, I felt I could at least talk to the professionals on a respectable level. It empowered me. The class members  empowered each other.
In the past, I had been trying not to react.  Now, at least, I had some tools as to how to react, and some empathy for what life might be like for Ben.
I was going to need it all.  Many crises lay ahead in the next few years. Without NAMI, I don’t know how we would have survived it. Even with NAMI, I don’t know how we did it.
Happy birthday, Family-to-Family.

Mental Illness and Work: Capability, Dignity, Small Steps

Three hundred people showed up to a job fair this month for seasonal work at a local tourist attraction. Twenty people were hired, and one of them is my son Ben.  Why is this such a big deal? Because Ben hasn’t been hired for a job in over eight years, since before his first hospitalization for schizophrenia. I am so overwhelmed with surprise and pride at this news that I realize I hadn’t even dared to dream that this could happen yet for Ben.  In recent years, he’d begun to succeed in college part-time (the fact that he is starting to know what he can realistically handle is a huge step in itself.)

So much of Ben’s growth in recovery has happened in these small steps that this huge leap into the work world scares me a little – yet I know (and keep reminding myself) that this is Ben’s journey.  My questions – will this be too much stress for him? will he be able to wake himself up every morning when he has to get to work by 8:30? will his schoolwork suffer? – are ones I must keep to myself, and trust my son and his team of caseworkers to handle the answers without me.

But – over-riding all this is the wonderful pride I see in my son’s eyes.  The value of having an actual job, of feeling useful, of being wanted for what you can offer: yes, indeed, priceless.  Ben, who while in the throes of the onset of his symptoms wrote that work was a “government plot designed to enslave us,” has now changed his mind.  This week he wrote this:

If I were to give one piece of advice to the reader of this ‘message’, I would say that in order to get to where you want to be in life, what you have to do is walk the path.  Now, I understand that this probably sounds easier said than done, and – I won’t lie- it is. I now have goals for my life, and I must be willing to actually perform the steps that the goals require. One way to make this easier is to learn from one’s past, and embrace the lessons which will make walking the path easier. – Ben, 2011

A huge question, though, is one that no one on his team seems to be able to answer correctly – what, exactly, will be the effect of this minimum-wage job on Ben’s benefits?
His job coach says he is an “employment specialist”, not a “benefits specialist,” so he doesn’t know. Ben’s group home staff members ask his agency caseworkers, who ask their supervisors.  Wrong answers abound.

Finally, I find some answers. Tips to help you, if you are in similar circumstances:

  • There is a “benefits specialist” somewhere in the system.  Hunt and find.
  • Social Security has a “Ticket to Work” program designed to help those receiving disability benefits as they take steps to self-sufficiency. Go to for details
  • There are different rules for SSDI, SSI, and any additional benefits you might get on a state level.

Ben is walking his path. Today. And someone has finally noticed – enough to hire him. I, as always, have my fingers crossed and my gratitude high. Having a job to go to is so the most amazing boost for Ben’s dignity. Is it that way for you, or your relative with mental illness?