Ben Behind His Voices Blog
One Family’s Journey from the Chaos of Schizophrenia to Hope
NEW!– the Ben Behind His Voices audiobook has been updated with a new intro, epilogue, and bonus material! – available only in audiobook form. (updated 2022)
Hear all of the original award-nominated memoir, and find out what has happened in the decade since. We continue our journey through crisis, help, and into hope.
Schizophrenia: Nearly Everyone is a “Long-Hauler”
We Need a Cure
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.
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.
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!
"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?
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.
Frequently, hearing voices groups encourage people to reject any diagnosis of mental illness, or "psychiatric labels," they may have been given. They encourage participants to listen closely to their voices to investigate their meanings and origins. Encouraging people to focus on their voices when they may be having a hard time differentiating between what's real and what's not real can be very poor advice.
Susan is the author of After Her Brain Broke: Helping My Daughter Recover Her Sanity. She is a Mom/advocate like me, with many academic achievements to her credit as well.
My comment to her post follows. A slightly shorter version appeared in HuffPost.
What do you think?
We are all "a little bit mad", if you count a mere touch of some of the symptoms that affect the life of my beautiful son, who has lived with severe schizophrenia for over 15 years.
Sure, we all live with some unwanted thoughts, with superstitions and rituals that comfort us somehow, with moods and desires that vary for many reasons. But most of function. We work, we love, we keep commitments, we plan for our futures. We know the difference between thinking, or wondering, about jumping off a bridge and actually doing it. We have a "thermostat of reality" which seems to save us from disaster.
My son Ben, however, without his medication, has no such thermostat. Trust me. Time and again, when his meds levels drop, he loses jobs, friends, purpose and - most sadly - any sense of joy.
Surely medication alone does not a recovery make. We, all of us, need some level of structure, purpose, and community to thrive. This varies with the individual, as does the level of need for medication.
The "hearing voices" concepts may be a helpful element of recovery once a level of stability is reached, but to assume that the movement is for everyone - much as we wish it were true, believe me - is not only shortsighted but downright dangerous.
Ask any family who has lost a loved one to schizophrenia's voices. Ask any family whose loved one has been a victim of someone who listened too hard to the voices, and could not stop. Ask the folks who attended a Batman premiere in Aurora, Colorado.
We need research. We need better treatment options. We need the right to find what works for each person who lives with serious mental illness.
Thank you, Susan.
Randye Kaye - author, Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope
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 DemonsThe Day the Voices Stopped His Bright LightCrazyBeautiful BoySomeday 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.
Thoughts?
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 schizophrenia.com, a short summary of a list of negative symptoms are:
lack of emotion – the inability to enjoy regular activities (visiting with friends, etc.) as much as before
Low energy – the person tends to sit around and sleep much more than normal
lack of interest in life, low motivation
Affective flattening – a blank, blunted facial expression or less lively facial movements, flat voice (lack of normal intonations and variance) or physical movements.
Alogia (difficulty or inability to speak)
Inappropriate social skills or lack of interest or ability to socialize with other people
Inability to make friends or keep friends, or not caring to have friends
Social isolation – person spends most of the day alone or only with close family
NAMI Family-To-Family: Happy 20th Anniversary
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.
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 www.socialsecurity.gov/work 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?
Henry's Demons, review
Henry's Demons: Living with Schizophrenia, A Father and Son's Story by Patrick Cockburn
My rating: 4 of 5 stars
Henry's Demons is an insightful look into both the family experience when schizophrenia strikes a loved one, and into the U.K. System of care. As a parent in the United states, I couldn't help but compare Henry's experience (e.g. months at a time in the hospital) to my son Ben's story here in the United States, where it seems that every day the hospital must justify the stay to the insurance companies. I must admit, I was a bit jealous at first; yet, I don't see that Henry benefited much from his extended stays, so maybe not. Hmmm.
Cockburn writes movingly and intelligently about his father's-eye view of Henry's illness and the actions it triggers; as a journalist, though, he focuses on many of the issues and facts more than his emotions about Henry's illness. Through Henry's chapters - a unique feature of this book - we get a view of what incidents were like from the point of view of someone who is suffering from schizophrenia, and actually hearing the "voices" that encourage him.
We don't get to know Henry much before his illness, though there are glimpses.
Henry spends a lot of time hospitalized; he also spends a great deal of time escaping. How is this so easy to accomplish? Yet, I have no doubt that every word is true.
This is a great addition to anyone's understanding of the family experience when mental illness strikes. Indeed, it can happen in any family.
Ticket to Work: The Road to Self-Sufficiency, fingers crossed.
Ben has a chance at a job. A real job. Minimum wage, yes, but for him to make it to a second interview, and then to a possible job offer for the summer...well, the tears I feel remind me that I hadn't really even dared to dream this for him. Ben hasn't had a job in eight years, since he was twenty years old.
He is so excited - it's the validation, the possibility he may be able to earn money, be useful, have something to say about his life other than "I live with roommates and do volunteer work" and - lately - "I go to school part-time", a miracle in itself . He is also facing, suddenly, questions like:
- What will come up in a background check? Will the employer know about my hospitalizations and diagnosis?
- Will I lose my SSDI? SSI? State help? Medicare? Medicaid?
- What is a "Ticket to Work", and do I have one?
- Will I lose respect and the chance at this job if I reveal my diagnosis?
Practically, I was able to find answers by calling Ticket to Work, and by visiting the Social Security Work Website
The emotional questions are the ones that are more difficult to face
- but Ben is asking those questions, and setting his limits as to how much he wants to, or has to, reveal. His dignity is so at stake; still, I'm amazed and proud at what he's doing: calling his job coach himself, contacting other so-called "experts", formulating exact answers to the questions that may come up. He has more than risen to this occasion. Again, the happy tears.
And the fears, which I am trying to ignore.
Will this be too much for Ben? Will he be able to get to work at 8:30 AM each day? Will the no-smoking rule cause problems for him, even though he says it is not an issue? Will the stress cause a relapse? Shouldn't he take a lesser, part-time position?
But these are Ben's decisions, not mine, All I can do is help with the research and share the information with him and his providers. Then let go. And have faith: faith that he can handle 32 hours of work each week, and still keep up with 6 college credits. And not break under the stress.
Nothing would make me - and Ben - happier.
Author Reflections: "Ben Behind His Voices" launch date set
It's real! The official publication date for Ben Behind His Voices is September 16, 2011. When you search on Amazon or Barnes & Noble, there is a listing. As a first-time author, I have to admit that this is even more exciting than my first kiss. Yep. At least I think so - the first kiss was so unexpected (another story for another time), while this listing is the culmination of years of writing, rewriting, query letters, bouncing back, trying again, and finding and reconfirming my own faith in the book's value to others.
Yet this is nothing - nothing - compared to the challenges Ben himself has faced in the same period of time.
In a way, the timing of Ben's publication couldn't be better, for when I first sat down to write our story Ben was just a few months into recovery. Now, he has logged over five years (knock wood) hospital-free, and we've been able to see how recovery can progress when psychosis is avoided for longer periods of time. So, because of this long journey to publication, I hope that our memoir will offer even more information and hope to its readers, as I've updated Ben's progress frequently as the drafts piled up.
Here is the description from the listing (image and "search inside" features will come later, but you can pre-order) - it contains my hopes for the book's effect: to increase understanding and respect for those with mental illness, and for their families; and thereby reduce stigma.
For any families in the same boat: there are guidelines of info and resources at the end of most chapters. I hope you will fall in love with my son Ben before you get to the part where his illness takes hold. He is there, behind his voices, all throughout the book - and he still is. As is your loved one. Hard to see sometimes, I know. but love helps. So much.
Marijuana and Schizophrenia: another view
The latest fad in schizophrenia theory: marijuana caused it. Yet another finger to point, to create the illusion that it is somehow the "fault" of the person who has the illness. Here's an intersting article that tells another side of the story: Marijuana and Schizophrenia: Cause or Therapy?
De. Phil Leveque begins with these words: "This story is engendered by an article in TIME Magazine Feb. 21, 2011 entitled Pot and Schizophrenia: A Dangerous Mix. To put it mildly, TIME is full of crap and so are the authors of the medical article from the University of New South Wales in Australia. It states they reviewed 83 studies and found that POT smokers who developed psychotic disorders did so 2.7 years before non-smokers. The medical article is very suspect and I will try to explain why."
I wrote to Dr.Leveque:
"Thank you! Finally, another view to the newly-popular 'marijuana causes schizophrenia' theory. As the mother of a son with schizophrenia, educator with NAMI, and the author of a memoir that we hope will spread understanding and hope re mental illness, I applaud you for your article in the Salem-News.
It has been my understanding that my son began to smoke pot as a reaction to his illness, not the other way around. Schizophrenia is nobody’s fault. Many who don’t know better will grab at any explanation so that they feel we have some control over who “gets it” and who is spared. The only thing I know for sure is that early detection and treatment can help avoid psychosis, and therefore provide a better prognosis for recovery. But my son did not 'cause' his own illness, through marijuana use or anything else. Thank you for refuting the Australia study.
If you need any comments from a Mom/author who has been through it – and whose son is currently living a full (and clean/sober) life, despite his illness, please feel free to contact me.
Thanks again,
Randye
Randye Kaye
author: Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope(Rowman & Littlefield, summer 2011)
Can Schizophrenia be Prevented?
If you want the facts and latest news about schizophrenia and the people affected by it (those who have been diagnosed and the people who love them), I highly recommend two amazing websites: http://www.nami.org/, and www.schizophrenia.com.
NAMI has taught me that there are nine stages of emotional response for the families of those with mental illness. Whether you are in an earlier stage like crisis/chaos, a middle stage such as anger/grief or a later stage such as understanding, information will - immediately or eventually - help to empower you.
Click on the address or title for the links to each website - NAMI's home page, and a new article found on schizophrenia.com about prevention of schizophrenia.
Preventing Schizophrenia
One of the messages in my book Ben Behind His Voices:One Family’s Journey from the Chaos of Schizophrenia to Hope is that early detection is vital. Articles like this help us know what to look for, much as we may not want to see it at the time. Much research suggests that prevention of psychotic breaks can avoid the destruction of brain matter. I encourage you to learn all you can
Another family's schizophrenia story
Before we found our publisher for Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope, my agent and I received several quite lovely rejection letters, stating how much they were moved by the story and by the writing - but that they feared it "just wouldn't sell" because of the subject matter.
Now, coming out very soon, another family's story, called Henry's Demons. This is by Patrick Cockburn, his wife, and his son - a UK family, each telling their part of the experience.
Reviewed by the NYTimes, moving up high on Amazon. I've just ordered it, and hope to connect with the family someday. Yes, this subject does sell - and it needs to be heard.
Is this "competition" for my book? No! It is a partnership. The more families that come forward to tell their story, the more we can all work together to increase understanding, reduce stigma, and increase respect. Bravo!
Creative writing, then and now
Ben is taking two classes this semester: Directing 101 in the Theatre Department, and Creative Writing. The directing class requires a lot of him, things that his illness have compromised: insight into one's own emotions and the feelings of others, social awareness, stillness, complete connection. Do I tell the professor that Ben has this illness, so she is aware she needs to grade him in accordance with his disability?
And...creative writing. Ben's writing used to look like this:
- and that was before it began to look even more scattered and illegible. Now he is writing haikus, and keeping up with assignments. 200 pages of reading assigned between classes, I fear, may cause him too much stress; yet, it is his journey to complete. He is getting assignments in on time, so far - even, in one case, a day early. That requires a connection of cause and effect I haven't seen in years. Still, I want to make sure he gets a fair shake...do I write to the professor?
Meanwhile in this letter, from a Mom in England who has lost her son to schizophrenia, the story has unfortunately ended quite differently.
She writes this, in The Guardian:
"So the main reason I wanted to write was to say sorry. I did the best I could with you and for you at the time, but it wasn't good enough and I ultimately failed to protect you and keep you safe. I wish I could go back in time and do things differently."
Maybe with support, and without the stigma, her son's life could have been saved. Here is the link to the letter, which breaks my heart:
http://www.guardian.co.uk/lifeandstyle/2011/feb/05/letter-to-my-late-son-who-had-schizophrenia
Ben Behind His Voices this summer!
The cover design has been chosen at last, and it makes the upcoming publication finally seem real. The exact date of publication is still tbd, but it should be in bookstores in August 2011, and available for pre-order at the end of June or by July. There are more updates available by either joining the facebook group "Ben Behind His Voices, the book", or by joining my e-mail list using the link on the home page at https://randyekaye.com/ - just specify the "Ben" list when you get to your choices.
Here are some advance comments, though!
Poignant, stark, and the energy of the scenes are set up really well. This work has screenplay written all over it. The dialogue is wonderful and the pace of the story moves briskly.
– Nancy DeRosa, author of A Penny’s Worth, and There’s No Place Like Home
What I find most compelling about Ben Behind His Voices is the author's honesty as a mother about her true feelings. She connects with her readers because she allows herself to be human and vulnerable and share both her struggles and triumphs.
– Amy J. Barry is author of A Child’s Grief Journey and writes an award-winning parenting column, A Parent's Eye View.
Should be required reading for all psychology professionals and students, as well as anyone who loves or cares for someone suffering with schizophrenia. Incredibly well-written, profoundly honest and, perhaps, most importantly, Randye Kaye offers help and hope to thousands of families needing to hear her story. I sat holding my breath as I turned each page. The author is not only a survivor and an incredibly loving mother, she is - by any standards - a gifted writer.
– Linda Appleman Shapiro, psychotherapist/oral historian/author of Four Rooms Upstairs: A Psychotherapist's Journey Into and Beyond Her Mother's Mental Illness.
Emergency Room again - but different this time
9 PM. The cell phone rings on my way home from teaching a class.
"Randye? It's Desmond from Harrison House."
Ben's group home. My heart skips a beat, a conditioned response. What has Ben done? Did he stop taking meds? But he's been doing so well!
Desmond senses my approaching panic. "Don't worry, it's nothing major. It's just that we're taking Ben to the Emergency Room. He cut his hand cleaning up the kitchen and he may need stiches."
It's ridiculous but true: I am relieved that Ben needs stitches. Oh, is that all? I think.I rush to the hospital to meet Ben and Desmond, and can see that this is manageable. The cut is deep but easily fixed with a few stitches. Ben has cut his hand between the thumb and forefinger while washing a chipped ceramic cup. Ben does not seem to be in a panic, either; he's just worried about the pain, same as when he was seven years old at vaccination time. This I can deal with.
Desmond goes back to Harrison House and I stay with Ben. At the admissions desk, the nurse asks, "What medications are you currently taking?""Prilosec," says Ben.
That's an over-the-counter fix for acid reflux. Easy. OK. Will he mention his real meds?, I wonder.
And he does. He says the brand names of the two meds that, combined, have kept him out of the hospital and in the world of real life for the past 5 years.
The nurse doesn't recognize the names of the meds, as they are the liquid and dissolvable forms of the more recognizable brands. "What are they for?" she asks.
I have no idea what Ben will say. But he answers. "They're for schizophrenia," he says.
A victory? I don't know. But I'll take it. This doesn't mean he accepts his illness; it just means he knows what the meds are for, in general. I don't press the issue. This is fine, just fine.
We're called into the medical area and Ben spots the treatment table where he is to wait.
"Wow," he says. "This is way better than the last time I was here. They used a straight jacket that time."
I cannot believe he just said that. He almost never talks about the times he was admitted to the hospital for psychiatric reasons. "Well, not exactly a straight jacket," I reply.
"Well, they used restraints or something. Anyway, this is way better," he says, and smiles.
"Yes, it certainly is." My thoughts exactly, but I hadn't dared mention it. The fact that Ben did - well, it's another small miracle. I allow myself a prayer that he may never have to be admitted as a psych patient again. I know I can't control that, but I can hope. And be glad that he's glad.
A few nerves, one shot of novacaine and a few stitches later, we are out of there. Just like any other, normal, mother and son.
Yes, this is much better.
Gentle Reality Check - and LEAP with Xavier Amador, Ph.D.
Sometimes Ben’s behavior is so wonderfully ordinary that I almost let myself imagine that none of this ever happened: the hospitalizations, the calls to the police, the fear and chaos. I can forget, for a while, that Ben has a serious mental illness.
It’s Yom Kippur. I can see Ben in the congregation at services this year, from my place in the choir. He is clean-shaven, dressed up, sitting next to his sister and her fiancé. My growing family. I feel so joyful to have them all here, together. They’re all participating, even listening to the Rabbi’s sermon on apologies. Still, I keep checking on them – well, on Ben – every few minutes. Sometimes I catch his eye, and he smiles and waves to me. Then there are the moments he doesn’t know I’m looking: I catch him grimacing, mumbling a bit under his breath. The self-talk. He usually can keep it under control now, but it comes out in overwhelming situations.
Yep. He still has schizophrenia. I know it, of course, but sometimes I like to imagine it was all a nightmare that is now over.
In a way, though, some of that nightmare is over. Thanks to some excellent life teachers, I have changed how I react to this situation, and that changes the situation itself. I have given up on being “right”.
Part of that change in my attitude was greatly influenced by the book I am Not Sick, I Don’t Need Help,, by Xavier Amador, Ph.D. If you're still stuck in the frustration of trying to convince your relative that he/she has a mental illness, I highly recommend you read it. It may save your relationship.
Two weeks after Yom Kippur, I get to spend two days with Dr. Amador and hear first-hand about his experience when his brother developed schizophrenia - and how, years later, they were able to be brothers again. The pain is all too familiar; thanks to info like this, though, my family has been able to have Ben back in our lives. Like Dr. Amador with his brother, I began to regain (and still retain) my relationship with my son when I let go of being right, or being somehow able to say the magic words that would “convince” Ben that he had a mental illness.
These two day are about paying it forward; we are learning how to apply the LEAP (Listen, Empathize, Agree, Partner) process in helping someone with mental illness, and about training others to apply it. We’re a hand-picked group: two from NAMI Family-to-Family, some providers, and mainly police officers. I’ve never had the chance to hear crisis stories from the law enforcement perspective, and am so in awe of these detectives, hostage negotiators, trainers, and crisis intervention specialists.
In the crisis years with Ben, I had to call the police several times. Once, Ben called them to report that I had been threatening violence toward him (a long story, but unfortunately not an unusual one). Fun times indeed. Lucky for me, the police in my town had been trained in handling a crisis with humanity, respect and perspective. It could have been so much worse. To them, and to the cops who took this training with me, I say a huge thank you.
Families in crisis are so raw, vulnerable, confused, sad and often angry. Your patience and empathy helped us through.
With more understanding and action like this, we can work to reduce the stigma and chaos of mental illness.
PS – some exciting news coming soon about Ben Behind His Voices: One Family’s Journey through Schizophrenia to Hope. Stay tuned!
And you can write to me at randye@randyekaye.com if you want to receive the news via e-mail.
