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!
What if Target's Sweater Poked "Fun" at Cancer?
What if it said “Christmas cancer. My spending is growing uncontrollably”?
Is really "just a shirt"?
This week, social media has been abuzz with two "holiday" issues so far: the Starbucks Cup ( and there's not much left to say) and a sweater still being sold by Target which amusingly ( to their buyers, I suppose) calls O.C.D. "Obsessive Christmas Disorder.
"Mental Health Advocates are up in arms about this "joke", which not only trivializes a serious and sometimes debilitating condition, but in doing so spreads misunderstanding and stigma. Target is refusing to remove the sweater from its racks, and its supporters say "oh, get a life, it's just a harmless joke."
But what if the sweater read:
I have Christmas
Cancer.
My spending just keeps growing out of control.
I ask you, what then? Would anyone be supporting Target's "right to make a joke"?
I have a sense of humor. My son has schizophrenia, another serious mental illness, and after years we can finally laugh together about parts of his past. But the key word is: together. We laugh with, not at.
OCD is not "cute." It's not Monk wanting to keep his shoes in a row and the carpet clean. Some are able to manage the symptoms, but many are not, and this illness prevents them from living a productive life. For those who struggle to manage this, or any other serious illness, it's not a laughing matter - unless you have earned the right to laugh with, not at, perhaps struggling with the illness yourself - and then only if the time is right.
No one needs a healthy person wearing a sweater that trivializes the condition of someone who is not.
I recently went through a year of physical therapy to regain the ability to walk, and laughter has helped...but not laughing AT. Only in the physical therapy room, or with my family and friends who have helped me through, was humor appropriate - and actually quite welcome. But if anyone were to make fun of me, or wear a shirt that said "I am crippled for Christmas: My credit card has limitations", I would be annoyed at the trivialization of my pain.
laughing at oneself is very different from laughing at someone else.
Mental illness is still a physical illness; it's in the brain. If you wouldn't make fun of cancer, Target, don't make fun of OCD, schizophrenia, PTSD, bipolar, or any other illness of the brain.
Pull those sweaters now.
Sons with Schizophrenia: A Tale of Three Mothers
Three mothers with so much in common, we could form a club. Each raised one son and one daughter, through adolescence into young adulthood. Each loves her children with all her heart. And, sadly, each of our brilliant, happy, sweet sons began to change in their mid-teens, and were eventually diagnosed with schizophrenia. We have each written about our experiences, shared our stories so they might help others.
But our stories have taken three very different turns. Today, one of these mothers mourns the death of her son, who passed away in “individual housing” earlier this year. Another of us sits stoically in a courtroom as her son is being tried for shooting moviegoers in Aurora, Colorado. And I, the lucky one, get to hug my son as he heads off to work, in his car, filled with gas that he paid for himself. For today, yes, I am the lucky one.
Love matters…but it’s not enough
My heart goes out to the other mothers, even though I have never met them. I only know them through their writings, but I feel their struggles, their pain, their guilt, their love. Anyone who lives with mental illness in their family knows that we live life with crossed fingers, and we fight with all our might to make the right decisions.
And it is far from easy.
Laura Pogliano called herself “lucky”, too, sharing her story The Fortunate Mother: Caring for a Son with Schizophrenia in USA Today in 2014. In it, she “feels lucky that she's been able to hang in, lucky that Zac is not living in jail or under a bridge…even though ‘Twice a year, right in front of me, he disappears into psychosis, and there is very little left of who he is. Then medicine resurrects him for a few months, I have much of my child back, then he dies again.' “
Later, she struggled with whether or not to let Zac get his own apartment. In a USA Today follow-up story, Laura says Zac had moved into an apartment near her home, and that she had tried to “protect her son without being overprotective.” Zac stopped communicating with her for a few days, and she had the same reaction as many parents who strive to allow independence with limits: “I asked myself, 'How much do I baby him? If he's with some friends, I don't want to butt in.' ''
Who hasn’t been there? I know I have. That balance between letting go and stepping in is a staple of parenting. In Laura’s case, the results were tragic: Zac was found dead in his apartment in January 2015. Her “luck” had run out…but the lack of respect and services for her family situation is certainly more to blame than luck.
Laura is devoting much of her time now to honoring Zac’s life with her advocacy. This did not have to happen. See her powerful piece called My Mentally Ill Son versus Your Son With Another Type of Illness.
Young Holmes Family
Holmes Family Today
Arlene Holmes is the mother of a man who is hated by many. Her son, “Jim” is known to us for only one thing : the day he opened fire in a crowded movie theater in Aurora, Colorado, killing 12 and wounding 70. James Eagan Holmes, before that day, was a neuroscience student, a camp counselor, a church goer, a class leader, a big brother. He was – and is – somebody’s son. And he had needed help for a long time.I don’t profess to understand how Arlene Holmes feels. I can only imagine the guilt, regret, isolation and grief – and surmise that these feelings began long before the “Batman incident”, when her son first began to show early behavior changes (including a suicide attempt at age 11). What I imagine to be the feelings behind the stoic expression of Arlene and her husband as they sit near their son during his trial comes from her self-published book of poetry When the Focus Shifts, her reaction to the shootings, and the arrest and trial of her son. She states that the proceeds are to be donated to medical and mental health services.
Is she a “monster”, who “raised a monster”? I doubt it. I suspect that she, like me and Laura, was just a woefully underprepared and unsupported parent.
She writes:
(01-08-2013) I can never forgive myself for not knowing that this would happen.
How could I have known?...
Forgive yourself…And then forgive the people who hate your guts and want you dead.
(02-01-2013) I had a good kid who never harmed anyone.
That changed; his brain changed.
(03-22-2013)
A memory of when he was in high school…we are hiking up a hill
I can’t keep up.
Jim stays behind to make sure I am okay.
Isn’t that empathy?
Arlene writes about sitting in Jim’s untouched childhood room, “because I need the memories and tangible evidence that he was a good person.” Could this have been me? Could it have been Laura? Three mothers – three sons with schizophrenia.
What made the difference?
Is it love? I highly doubt it. These boys were all loved.
Is it the lack of family education and support? Shortage of attention paid to early diagnosis and treatment? Is it the fear of diagnosis, fed by stigma, fear, and paucity of realistic access to treatment that must be consistent to be effective? Answer: sadly, all of the above.
Or is it also just the randomness of things, the moments we missed when we look back and say, “I wish I had known?” To this I say: you can never know. You can guess. You can educate yourself. You can take whatever actions seem right, do what the mental health system “allows” you to do. But nothing is ever that clear where mental illness is concerned.
“Show me a prison, show me a jail
Show me a prisoner, man, whose face is growin' pale
And I'll show you a young man with many reasons why
And there but for fortune, may go you or I”
- Phil Ochs
Is it fortune? Really? According to a 2006 study, “An estimated 56 percent of state prisoners, 45 percent of federal prisoners, and 64 percent of jail inmates have a mental health problem.” So can we also blame a mental health system that is underfunded, shortsighted, and mired in legalities that prevent people with mental illness – and their concerned families - from getting the help they need?
I’m talking with George, a social worker who works in the prison system, about this. He says that, yes, many of his prison clients have schizophrenia. We agree that so many of those with unmanaged mental illness wind up instead either homeless or in prison, and that they’d have been better served by receiving treatment, as early and consistently as possible – but then George shocks me with his next statement. He says:
Of course, the majority of my guys are imprisoned for killing their parents.
This stops me in my tracks, knocks me right off my soapbox. There but for fortune…?I have often imagined how hard it would be if Ben were incarcerated (which almost happened), institutionalized (which also almost happened), or homeless (which did happen, in the past) – but the thought that he could kill us, or anyone, in the midst of psychosis has never crossed my mind. Ben is a gentle and sweet soul – has been since birth – and I’ve always felt that this has been our saving grace. But did Arlene Holmes think her son incapable of violence? Did Laura Pogliano think she was through the worst of it when Zac admitted he had schizophrenia and agreed to be interviewed by USA Today?
The truth is, I have no idea what Ben’s voices tell him when he is untreated . He has never admitted to even hearing voices, much less the words he hears, but if he stops taking medication the fact that he responds to this internal world is undeniably clear. We only hear and see Ben’s side of the “conversation” – he gestures, grimaces, talks – but what do the voices say to him? I hope we never know, We’ve made it our job to make sure he stays in treatment, keeping that internal world quiet enough so Ben can work, live and love in the external world. We have no “legal” right to do this, of course; it’s simply a house rule, and Ben follows it. We have set limits in our home and we enforce them. So far, so good.
These days, Ben has a job he excels at, a social life with friends and family, and interests like hiking, bowling, and college classes. He takes his medication twice daily, which we supervise. Not my favorite moments in the day, but worth it. Every day he asks for a “Mom hug”, and tells me he loves me. Lucky family. We know it. But we live life with crossed fingers. All we can do is our best to make sure we respect his illness enough to keep it managed. And the rest…is out of our hands.
There but for fortune….and one hell of a continuous fight. For treatment, for research, for respect for the needs of those with mental illness, the right to have treatment and the right to a future.
Three mothers.
Three stories.
Three outcomes.
Countless other families that could have been saved – including those of who have lost loved ones – with early diagnosis, stigma-free treatment, understanding, better research, mental health support services.
When will we ever learn?
"Silver Linings Playbook" and Meds: Why the Secrecy?
At the end of the movie Silver Linings Playbook, when main character Pat Peoples is about to embark on the next, happier, more stable part of his life, I think he says something to his ex-wife about doing much better because he is focused, determined, physically fit - and (shhh!)taking his meds.
I think he says this because it's muttered almost under his breath - like it's a big secret we don't need the audience to know. As if he could do it all by himself without those nasty "drugs".
Really? Most of the one-out-of-four families who deal with mental illness will say that, while all those other elements of recovery are also essential (love, purpose, helping others, exercise, structure) , they could be entirely useless without the medications that stabilize the brain. Albeit not perfectly.
Does Pat Peoples Take Meds in Silver Linings Playbook ?
One quote from the book:
"...a woman who knows all my secrets, a woman who knows just how messed up my mind is, how many pills I'm on, and yet she allows me to hold her anyway",
suggests that Pat did, after initial resistance (which we see in the film), take his medications (which we might see in the film, but it's left unclear).
How nice it would be if people like my son Ben, diagnosed with schizophrenia, could see a movie hero who learns to accept that his meds do help, openly swallow them in the movie, and acknowledge that they have been part of his recovery.
Thank You, Pharma Companies and Reps
In the past year, I've had the honor several times of addressing pharmaceutical reps to tell them how much their work matters. These reps have, well, a bum rap. The face stigma of their own, portrayed as money-hungry, aggressive, pill-pushers. I speak to them in my keynote asauthor and Mom, tell our story, and remind them that that without new developments in medication - which it is their job to make available - my son might not be where he is in life.
One comment from a recent attendee:
"Your story inspired our entire sales force to continue working hard to 'bring value to life' for patients and caregivers alike. I can’t begin to tell you how moved other members of the company from other sales divisions were to hear your story—it really helped put a face on schizophrenia and the many challenges and hurdles faced by all concerned."
So - if you research, develop, work for access, make available, or otherwise help to bring new meds to people like my son - thank you. Keep at it, because many of these meds could certainly be improved. But you give our family hope.
Even if my son still feels he needs to hide the fact that medication is part of his recovery. Even if he wants to think all the success is due to his own willpower and drive.
Recovery Needs Many Things - Internal and External
I am a big fan of drive, exercise, community, purpose, and a positive attitude. But, where mental illness is concerned, those qualities are usually not enough - not without meds, especially in people as young as my son.
Maybe, someday, there will be a popular movie that, loud and proud, gives medical treatment some credit too.
(Still - I loved the movie.)
The Tragic Newtown Shooting: Attention Must Be Paid
The horrors of 9/11 got us into wars overseas, and the memories continued to be used to justify our involvement there. Will the tragedy in Newtown get us into a war against easy access to assault weapons, underfunded mental health services, stalled research, and lack of support?
Never Forget. Act to Prevent.
Details continue to unfold about what might have contributed to the horrific incidents Friday in my neighboring town of Newtown, CT.
It is beyond comprehension, yet we struggle to find some threads that might prevent a repeat of it.
Many will, I hope and pray, start to listen and make changes to some of the issues involved: smarter gun control, earlier detection of mental health problems, and more access to (and insistence upon) treatment for those problems.
As we struggle to "search for solutions" (this week's topic on Good Morning America), I hope we also get to find out what Adam Lanza's mother, Nancy, had struggled with.
Did she try to get help for her son, only to be denied because he was "legally an adult, and there's nothing we can do now"?
Was she left with no choice but to home-school her son after he dropped out of high school?
Was she lost in a desperate attempt to hang on to some sort of bonding with a son she loved, but was losing to mental illness? (in her case, by teaching him about guns, taking to shooting ranges)
Did she even know how to navigate the confusing world of mental health services, only to find no road map, no support, no funding?
Did the stigma and blame of having a son with mental health problems keep them isolated and feeling there was no community left for them?
All of these things were true for us, at times. We had to, have to, fight every step of the way to get help, support, understanding. We are lucky. Ben's nature is sweet and peace-loving. Even his "grand delusions" when in psychosis were about writing the perfect poem that will create world peace. Also, we found help and community in NAMI, and Ben got support from an ICCD clubhouse, a residential facility, outpatient treatment, and newer medications that had not existed decades ago.
But the truth of the matter is that too many familes (like, I suspect, the Lanzas) simply give up before they can find help and support. They are left to "fix it themselves." Too many families are wiped out financially (as we were), emotionally (as we often were) and socially (as we sometimes were) before they find new paths to recovery. To help these families, I wrote our book, "Ben Behind His Voices", and advocate for the kind of help that might have prevented Adam Lanza from committing the most horrific crime the world could ever imagine.
I don't "know for sure" (Oprah phrase) that this tragedy could have been prevented. But, as the mother of someone who has a mental illness and has managed to find hope, I can't help but wonder - no, suspect - that the answer is yes. This did not have to happen.
We must all fight for understanding, research, funding of services, turning stigma into treatment, and supporting the families who are, too often, ill-prepared to fight mental illness alone.
Ben Behind His Voices: One Year Into a Book's Life
Hard to believe that the book launch party for Ben Behind His Voices was over a year ago now. The "new book smell" is gone. How are we doing?
Perhaps writing a book is like being pregnant: you're changing your life, making plans, working hard - yet have no real idea of what is coming into your life. Publication is like giving birth, perhaps - ah, here it is!, maybe the hard part is over.
Tend the Garden of Success Each Day
If that is true, then launching your book out in to the world is like raising a child. You have to work at it, every day - and, even so, there's much that is not truly in your control. You do your best, you try things from every angle, and then you hope that child will grow well, and touch the lives it/he/she is meant to touch. Keeping book interest high is a garden authors must tend every day - and, like a garden, the seasons are ever-changing.
So - here we are, one year in - and the biggest discovery for me, I think, is that people are still discovering the book. Unlike a flavor-of-the-month flashy new novel, the memoir seems to be more of a turtle than a hare - and that's just fine with me.
Sure, no Oprah appearance yet. Was booked onto Dr. Drew, but bumped by Hurricane Isaac updates. Ah, show biz.... Still working toward that "magical National appearance", perhaps - but there has quite a lot of press on the local, state, and Public Broadcast level. And, the book is young, and so far very well-received, both by reviewers and by readers who reach out to me. So I don't think the chance is gone. At least, I hope not.
My publisher, who has had to move on to the new releases, seems to have noticed that book sales are growing instead of fading, as I got a note from my editor: "It’s great the book is still garnering interest. Usually things really trail off after the first year."
Not if I can help it! Not when I'm still receiving letters from readers like this one:
Your book has been so very helpful to me. I am not done reading it yet, but so far this book mirrors my son's symptoms that I have been explaining away.
Thank you for sharing your experiences with me. Without ever knowing you, I feel very connected to you and your son. Thank you for helping me along my journey.
So, when my editor adds, "Great job! I wish all my authors were as into it and on top of it as you. I wish they would get the message that this stuff can help drive sales and recognition." - what does she mean?
Sure, book readings at Barnes and Noble are done - that's so last year. But there's a lot that still works. Mostly it's about finding new reasons to share the story - and there are so many things to fight for, to increase awareness of, in the world of mental health. So the work now is in topics, in the platform:
Keynote at Univ. Mount Union
Increase respect
Shift perspective from stigma to stability
encourage therapeutic alliance for recovery
see potential and strength
care for the caregiver
educate families so they can be allies,
advocate for services from housing to supported employment and education,
hear the many voices of people living with mental illness - and their families....
...and on. Hence the speaking topics I offer, and the gratitude for the places I've been invited to deliver them.
The book may be a year old, but the topic is timeless. Where to open the conversations? Everywhere. This week it was a keynote called "From Stigma to Stability - Changing Minds about Mental Illness" at a local Rotary Club. This weekend it's a presentation at the US Psych Congress in San Diego,. then a keynote atNAMI NYS conference. Also getting involved in advocacy with the ICCD (Clubhouses for mentally ill members) to talk about how helping someone with mental illness helps the family too...Hospitals, Universities, Medical Schools, Nursing Programs...and then there is twitter, facebook, my blogs here and at HealthyPlace.com...
Remember - one in four families deals with mental illness in a loved one. That's a lot of folks who need to hear they are not alone.
Year two, here we go! and thanks for your support so far. I hope you'll continue to share, tell others about this memoir and the work it is inspiring. There's so much still to be done.
And if you happen to know Oprah, well.....that'd be awesome too.
What Else is New?: Research, Reviews, Presentations
Quick Updates: (1,2,3...)
1. Ben Behind His Voices Comes to New York City!
Reserve and Come to Free Event!
Venture House, Inc. sponsoring this awareness raiser - hope to see you there!
On September 20th, 6 PM (reception) 6:30 PM (Book Reading and Discussion) -
Zucker Hillside Hospital - 266th St. and 76th AveG
len Oaks, NY 11104
reserve your (free) seat at events@venturehouse.org
(Venture House is a clubhouse programlocated in Jamaica, New York City that provides services to adults with mental illnesses)
2. 4HealingHearts Radio show - Conversation about Mental Health, Hope, Info, and Empathy - 8/3/12
have a listen here! or here's the link to download it
Listen to internet radio with 4healinghearts on Blog Talk Radio
3. More BBHV Reader Reviews: Thanks!
Thanks to the BBHV Readers on Goodreads for rating and reviews, including these:Kathy says: What an amazing book! Very informative, but above all, the love the author has for her son, Ben, shines through - even when Ben is feeling his worst... I highly recommend this book to anyone, if only to learn more about mental illness & how it changes the life of the person who has it & the lives of his family & friends.
Leslie: "Wow. So humane. So moving. This is going to be the first book I recommend to therapy patients and families dealing with schizophrenia. "
btw, Goodreads is a terrific site for those of us who love to read. Check it out!
Practical Advice: Treatment Advocacy Center
This post is for you if you need some clear, practical advice on how to be prepared for a mental illness emergency. The possibility always lurks in the corner, while we try to keep on eye on gratitude for the good days. The Treatment Advocacy Center has an excellent page on this topic, with step-by-step instructions for keeping the monsters at bay by knowing we are ready for them.
I will send you there through this blog post by their Communications Director, Doris Fuller, who says:
We who love someone with a severe mental illness probably all have our own personal coping mechanisms for getting through the worry and fear and frustration of living with the impact of treatable but chronic brain disease. The demons retreat, but they never retire. For me, being ready for them is the first defense.
I suggest you read her short, poignant-yet-realistic post first, but if you're impatient here's the link to the Be Prepared for an Emergency page.
Like all preparation, this takes time - but will save you a lot more in the future. Trust me.
Thanks, by the way, to all of you who wrote to express concern about Ben and his "adventure" in a questionable neighborhood. Like Doris in the above blog post, I had my eye out for a stress-triggered return of symptoms, but luckily his reactions to the stress all seem quite conventional. The only "demons" were the ones I could see as well: fear of returning to that neighborhood, reminding us to set our home alarm and change the locks, some reluctance to be alone. I would feel the same way.
Independent Living and Mental Illness: How Much, How Soon?
When a hug could fix everything...
I've spent a good part of this afternoon yelling at the people who are supposed to be supporting my son as he completes his first two weeks in "supported independent living." This was determined to be the next logical step after doing so well in his group home - that's what they told me, anyway.
Yeah. sure. Where is the support? In these two weeks, he has become isolated when not at work, has clearly (to us) somehow cheecked his meds twice, and has "forgotten" to show up for morning meds once. He also missed an appointment with his caseworker. This, too, he "forgot" - and they caseworker let it slide. After the initial move-in rush, Ben has not finished unpacking. I'll bet there are roaches crawling over unwashed dishes in his sink. I hope not, but let's just say I have concerns.
Why? Well, it could be the stress of too much change too soon. After seven years in Harrison House - where he had 24/7 staffing, 7 housemates, required chores and meetings, and someone to be accountable to - Ben now is expected to live alone, and "take responsibility." Except for showing up twice a day to take meds, he is left to his own schedule, his own decisions, his own life. Ben has lost his community, his sense of purpose, his structure and his parental figures. All without gradual steps. It's like they threw him down a flight of stairs and said good luck.
And, oh sure, we'll take you to the hospital if you break a leg. But we won't bother cushioning your fall or providing a handrail.
Add to that the fact that Ben's school semester ended during this time, he no longer has required meetings to go to, and he has no one to play cards with, say good morning to, watch Iron Chef with. Yeah, he said he hated Harrison House and couldn't wait to get out - but even the things he did to get away from there (extra NA or AA meetings, community Clubhouse, nights spent with his family) were good for him. If not for his job, he'd he alone all the time. And that is not good for anyone.
On June 9th, I'll be the keynote speaker at Fellowship Place in New Haven CT, where they provide community to those like Ben who so desperately need it - and cannot get it elsewhere. I wish Ben lived near their program. If he would go. Things we're required to do sometimes help us the most.
Several calls to the office later, I have spoken to every possible staff member about Ben's tricks for not keeping his meds in his system. If they have to tattoo it on his arm, I don't care. Watch him taking the meds - every second - and make sure he sits afterward according to doctor's orders. No bathroom, no cigarette breaks. Come on! How hard is that? Why doesn't every per diem staff member have access to that info?But - more than that - where is the plan they promised to make this transition easier? When I asked his caseworker, I got this response: "Well, we do a plan after 30 days, after we get to know him."
Really? When and how do you plan to know him? Do you know how a kid can fall through the cracks in 30 days? How will you know if he's isolating himself?
Will it be too late when you finally notice him?
Quote from the Fellowship Place website: "It is possible to overcome the effects of severe mental illness and move from homelessness, poverty, and despair to a life of hope and self-sufficiency"
Yes- with love, a good plan, a sense of purpose, and the right meds. What if I were not there to step in? What about the people whose families have given up?
Schizophrenia Recreated in a Computer
How does schizophrenia develop in the brain? What happens? Dr. Ralph Hoffman creates "hyperlearning" in computers, which then recalled stories as a schizophrenic patient might.
"Reporting in the journal Biological Psychiatry, researchers write of modeling schizophrenia in a computerized simulation of the brain's connections, called a "neural network." Yale psychiatrist Dr. Ralph Hoffman, an author on the paper, discusses what his team has learned from the model."
Why? To learn. If we'd never gone into space we'd never have the global networks we enjoy now. To my mind - and for the 1 in every 100 people who are diagnosed with schizophrenia - the more we learn, the better.
Research is vital to understanding - and to eventually finding a cure. We'll get every dollar spent on research back tenfold if those with mental illness can truly recover.
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?
"Hope, Respect and Dignity" : One CT Doctor Writes about Mental Illness
 |
| Bridge House, CT |
"I cracked as many jokes as I could before and during the talk and got the patients engaged in having fun. They were also encouraged to make relevant jokes -- perhaps the most important innovation of all. The laughter put them further at ease and the jokes engaged them in ways that helped return control back to them -- called having an internal locus of control"
 |
| Lionel Ketchian, Happiness Club |
Glee and the missing mental illness: schizophrenia
Dear Glee writers: I truly applaud your script this week, where Ms. Pillsbury finally comes to terms with her OCD. Dr. Stephanie Smith blogs beautifully about this here.
I loved the way Glee handled OCD in this episode- the stigma, the symptoms and the road to treatment. My only bone to pick: the psychiatrist played by Kathleen Quinlan - I'm assuming her vocation, as she was able to prescribe the SSRIs for Emma - spoke beautifully about acceptance in mental illness, mentioning every diagnosis except for schizophrenia. That, too, deserves an open forum. Come on, at least give it a mention!
Still, it's a start. Thanks, Glee. Someday maybe my Ben will may be proudly open about his illness. Maybe. But in the meantime, I'll remain thrilled that he is agreeing to treatment. So far, so good.
May is Mental Health Month! Here's a great resource for info at Mental Health America.
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
Catherine Zeta-Jones, Charlie Sheen and kicking the shame out of mental illness
According to CNN, "Catherine Zeta-Jones, has checked herself into a mental health facility.
The actress, who has been by Douglas’ side since he was diagnosed with throat cancer last fall, is seeking treatment for bipolar II disorder, her rep confirms to CNN."
There is an excellent link to an article on bipolar disorder here - and brava for Ms. Zeta-Jones for not only getting help, but for choosing not to keep it a secret. This takes courage, class - and, I believe, a desire to help others by example.
As for Charlie Sheen - well, no one can diagnose from afar, but I sure would bet a cup of coffee on the fact that he, too, has bipolar disorder. Just saying. And, with acceptance and continued treatment, he could be back on Two and a Half Men by the fall. However - the road to acceptance is no short journey.
Some never make it. Just read Dr. Xavier Amador's book, I Am Not Sick I Don't Need Help, to hear more about why. He talks about schizophrenia, which is a thought disorder; bipolar is a mood disorder, and that makes for many differences. With my son Ben's schizophrenia, there is no moment when his eyes shine with his full personality the way they used to before his illness developed; With bipolar disorder, there is often a precarious period during which the highs seemed tempered by the lows. As I sometimes say to the members of a NAMI Family-to-Family class when I teach about the different illnesses, "at least with bipolar you get to be charming part of the time." It gets a laugh - a painful laugh. But still. Hence, Charlie Sheen's wonderful timing in comic performances - and his outlandish hubris on his live tour.
However, there are similarities as well in thought vs. mood disorders. Psychosis is psychosis, and it's hard to diagnose a speeding train.
Britney Spears - remember the shaved head? Recall how her father finally took control and became legal co-conservator? See how well she seems to be doing now? That is so wonderful to see; still, in interviews promoting her latest CD, I see no reference to what really seems like a bout with bipolar disorder. Is it her family's right to keep this all private? Absolutely. But I can't help but imagine how many young people would be helped if Britney were to talk openly about her struggles, and if she was helped by treatment: medication, family involvement, therapy. So many college students suffer from depression and - more importantly - do not seek help because of shame.
Let's get shame in mental illness out of the closet and kick its butt. Being open about treatment is a great step towards that acceptance. Wishing Catherine Zeta-Jones and her family lots of love, and the same empathy and applause her husband Michael Douglas got when he publicly dealt with cancer.
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?
