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.
The Mental Illness Family Experience:More Reader Stories
Letters, we get letters....and each time it reinforces the fact that mental illness affects the whole family - and that many - too many - families are left to guess at proper treatment and cope alone, especially if their family member is a "legal adult."
at a recent NAMI conference, I spoke about the truth that underneath every "patient" is a valued person: (this link goes to a short youtube excerpt)
The Courage and Love of Families Dealing with Mental Illness
from a couple in Massachusetts:
I just finished reading your book and I say thank you. Our family has been on this journey for 12 years with our daughter. My wife and I read your story, cried, wiped tears and started again, shared in your triumphs and your challenges, laughed, recalled frantic moments, and on. We are members of NAMI, the F2F course many years ago saved us from bottoming out. We still fight every day for society to support this brain illness. I will hold onto your visions of Pride, Hope, and eternal love for your family. Thank you for speaking out and sharing your family with us.
from Laura in California:
First I would like to thank you for writing this awesome book. I have bought a few copies and am having extended family read it to help understand what our family is going thru. I am writing you because our son who is now almost 24 is diagnosed with schizophrenia...the real problem is at this age we want him to live independently from us. I am worried if anything were to happen to us he would be lost...Thank you so much again for writing this very important book.
from another Mom:
My husband and I both read your book Ben Behind his voices in four days we couldn't put it down you were telling my story with my son.I have both my sons mentally ill.
I have so many question I want to do what you did and help them get their lives back.
My older son unfortunately became violent I called the police one time ... he spent 4 months in jail/ Psychiatry, then he became homeless because he wouldn't go by the house rules and seeing a psychiatrist - let alone taking meds.
Both my sons had a breakdown in their sophomore year in college.
I would like to get my son off the street and get him help.Please help. I am also a member of NAMI.Thank you for the book you are a wonderful mother.
As you can see, the story in Ben Behind His Voices is not unique. Families are to often left to cope alone, and I am thrilled that we are, at least, beginning to reach out to each other. I'm honored our book is a part of that, but without you, wonderful reader, the story will only go so far. Thank you for commenting, connecting, sharing, recommending. I can't help but think that, even though the "newtown shooter" has not yet been proven to have had a mental illness, the situation would have very very different if his family had had education and support.
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?
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.
NAMI in the Community: Lifeline for So Many
This video, created by Barmont Productions for NAMI in Connecticut, shows in seven short minutes a smattering of some of the ways NAMI has made a difference in the lives of people living with mental illness, and their families and friends. In it, you will hear a small taste of why Ben Behind His Voices is dedicated in part to NAMI's wonderful work: education, advocacy, empathy and more.
As the host of this piece, I got to interview so many amazing people, and can only wish that the hours of footage we got might someday get re-edited into a documentary of 30 or 60 minutes, to pay homage to the many stories courage and love that I heard that day. Meanwhile - watch and enjoy!
The Refeathered Nest: Not So Empty. Not Just Us!
As we near the end of National Family Caregivers Month, I've been thinking about the less obvious form of caregiving: the fact that so many of our kids return to their old twin (or larger) beds in the family home, long after we'd imagined we'd have a nest empty enough to turn their old bedrooms into, say, a workout room. Ha.
Sure, my son Ben relies on us more than your neurotypical 30-year-old, because of the different life path affected by schizophrenia. But my other children, too, rely on us a lot more than I did my own parents when I was in my twenties. Financial help, washer-dryer privileges, family vacations. But this seems to be the norm.
Are your kids back at home after college too? Here is why: (thanks to Hannah Peters, and collegeathome.com)Just, sayin' : we are far from 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.
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:
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.
Unemployment: Rocking the Recovery Boat
Well, it has happened: Ben has been laid off from his job. When I picked him up yesterday, he had just emerged from the "meeting" some of us know all too well. We love you. We think you are awesome. We just have to lay off some people because of the season, and unfortunately you are one of them.
Oh, Ben put on a brave face. He immediately told me the "good news" that the layoff had nothing to do with him, that they will give him a great recommendation...but I could see it. He hasn't genuinely smiled since he got the news yesterday.
And that hurts. For both of us.
This job had been Ben's first since his 2003 hospitalizations - and for 18 months he has been proud to have an answer when someone asks, "and what do you do?" Even though he is also a college student, after a year and a half of also defining himself as a person with a job, it won't feel like enough to be in school.
This unemployment blow is painful for anyone - I know, and maybe you do too. Still, even with the current economy, a number of us will feel fairly confident we will be hired again, somewhere, to do something.
But we don't have to worry about whether we should disclose a history of mental illness, of several hospital stays in our past.
Ben's current (soon-to-be-previous) employer had been great about that. Even after a relapse in 2011, Ben had been welcomed back to work - and relieved that the "secret" was out, and hadn't made a difference. I blogged and spoke publicly about this wonderful employer - for, by accepting Ben's diagnosis and respecting his strengths, they not only gave him back an important part of his self-esteem; they also got, for themselves, a reliable, trained, enthusiastic employee and team member who always showed up, on time, and worked hard.
Let's hope (and, yeas, pray, why not?) that this particular history can repeat itself. Ben needs a new job. When he gets it, we'll look back and see this had been a mere glitch.
But, right now, it feels like a huge weight. Uncertainty can do that - and stigma is suddenly springing anew after having spared us for a time. And we need to be patient, optimistic, and hopeful. Maybe Ben can land a job on his own - maybe he'll need supported employment, a job coach, volunteer work. He - and we - will do everything we can.
I want to see the light come back into Ben's eyes. Hire him - he's worth it.
Living, and Sharing, with Mental Illness
Sharing Can Shape Our Lives
"For what we are, we are by sharing...and it is by sharing that we move toward the light." These words come from my temple's prayerbook for the Jewish New Year, and they never fail to re-ignite my sense of purpose each year.
Some seem to need this sense of community more than others, perhaps, but the fact is: we are all on this earth together. All of us. Healthy, or living with an illness or disability. Young, old, in between. Introverts and extroverts. Men, women. Different backgrounds, families, sexual orientations, strengths, challenges.
And what we are, what we become, the mark we leave on this world someday - it's a journey made meaningful by the sharing. And for that, we need each other.
How Stigma and Self-Stigma Can Lead to Isolation Instead
I recently participated in a wonderful panel called "Self-Stigma Solutions", alongside three people who live not only with mental illness but also with the stigma that can come along for the ride - both external and internal. Each person shared how they were either told, or told themselves:
"your life is over"
"you'll never amount to anything now"
"you'll never have friends"
"you may as well just give up"
Well - these people did not give up. They were down, but came back up. They not only refused to believe the stigma, they learned to change the messages they were giving themselves. Yes, even with mental illness and all the stigma that comes with it, sharing is possible. One of my fellow panelists is now a lawyer, one a therapist, one a counselor - and all share their stories to help others living with mental illness, and their families. Thank you.
As for Ben, he spent years feeling unemployable - which wasn't easy. How do you answer when people say, "and what do you do?", when it's all you can do to stay out of the hospital? Slowly, though, he began to build upon the sharing he was doing: chores at his group home, a commitment to "Anonymous" meetings, volunteer work, helping us with household chores when visiting. He needed to share, to feel needed. And, eventually, he not only returned to college- he also has been employed part-time for almost 18 months. Ben has a bigger playing field, and a clearer structure, for sharing - and it has added to his recovery in so many ways.
Steps Away from Self-Stigma, and Toward Sharing
Three Steps That Can Help Erase the Negative Messages:
1 - Consider the Source of Negative Messages (they may be ignorant of the facts)
2 - Hang On to the Positives (past success, others who believe in you)
3 - Replacement Messages (e.g. eliminate the word "just" or "only" when you describe what you do)
Yes, this takes patience. Yes, it takes rewording your doubts until they look like problems to be solved instead of obstacles that prevent. Yes, it takes work, and time. But each of them now share their lives, as does my son Ben.
However we find community - a group home, a clubhouse, volunteer work, a meeting, your family - we each have something to share. And, by sharing, we let our own lights shine as we move toward the greater light we all create together.
See the person, not the symptoms.
See possibility and promise. It's there, with treatment, respect, patience, community, and hope.
Beyond Hope, to Promise: Treatment Works
For the first time in years, Ben has spoken to me about goals - and he actually has some, that he is willing to share with me.
When you have a goal, it can be risky to say it out loud. What if you fail? What if your dreams don't come true?
For so long, Ben has been busy getting his life back to where it might have been had his progress not been interrupted by psychosis, hospitalizations, and regrouping. Step by small step, he has returned to college part-time, and recently celebrated a full year of part-time employment. But we have not dared ask, "where will this all lead?" or "What are your plans when you get your degree?". We didn't dare. It has been enough, the reality of these first steps. We tend to stay focused on today.
But Ben must be gaining confidence, as he now talks about wanting to "give back to the world" - as a teacher, perhaps, or an author. Will he get there? He just might. But, not all overwhelming goals, I am encouraging him to take one step toward each one and re-assess as the view gets closer.
But none of this would be possible without the treatment he is receiving for his schizophrenia. None of it. Without treatment, he would most likely be homeless, in jail, in a nursing home, or - let's just say it - no longer alive. Now, with treatment (medical, and also emotional and structural), we have hope, and have taken one more small step: his life also has promise.
Treatment is too often denied, not funded, not mandated - and that is a shame. Watch this video from the Treatment Advocacy Center about how Treatment Makes a Difference. Because it does. And we must keep fighting for it.
The Parents Network: Eyes, Ears, Heart and Soul
Yesterday I had the pleasure of swapping stories, issues and tips with Susan Schofield, Host of Bipolar Nation on LA Talk Radio, and her husband Michael, author of January First: A Child's Descent into Madness, and Her Father's Struggle to Save Her. (reviewed in my last post)
Sure,we were talking author-to-author, host-to-guest, but mostly we were talking parent-to-parent.
Here is the episode of the show where you can download or hear our conversation.
We need each other. I can't tell you how inspired, informed, and encouraged I have been by the hundreds of families I have met and shared with in the years since Ben's first symptoms. Some of these encounters have been at NAMI Meetings and Classes, some by e-mail, in media or live appearances, others in the pages of books.
Without you all, I don't know how we would have survived. Thank you - for the courage to speak up, the willingness to ask questions and fight, the empathy to reach out.
This is what I hope to give back to you in the pages of Ben Behind His Voices, and in meeting you too.
Together we can make a difference. My favorite cliche - because, like many cliches, it is true.
January First Review: Yes, Childhood Schizophrenia is Real
January First: A Child's Descent into Madness and Her Father's Struggle to Save Her
by Michael Schofield
My rating: 5 of 5 stars
It's such a mirror reflection of the emotions I went through as the mother of a son with schizophrenia - only my child was in his mid-teens when symptoms began. Jani was only - well, in hindsight for this loving, confused family, she was a newborn when her "differences" became apparent.
But, like our family, the Schofields thought, and hoped, that love - and disciplined, creative parenting - might just "fix" the problem. Not the case if your child has schizophrenia, trust me - and not easy to accept for either parent.
This is a highly readable, honest, raw memoir of the grasping at the straws of hope that we go through to find our how we can help our children. And, eventually, that we can't do it alone. Then, we have to find the right people to fill out the team. This, as you'll read, is a long journey.
Many had thought "childhood-onset schizophrenia" was not a real thing. It is. Oh, it is. And this family, like ours, has worked tirelessly to get through the maze, guided by love and hope.
Bravo!
Randye Kaye, author "Ben Behind His Voices"View all my reviews
CIT International: A Mother's Gratitude
I have just returned from the CIT International Conference, where I met so many who are passionate about their crisis and mental health work - and though I came there to share the family view, I learned so much more than I offered. And yet - everyone who met thanked me for being willing to share our story, and the family point-of-view when crisis hits. Wow. (No, thank you...)
Who was there? Police officers, mental health workers, detectives, Police Chiefs, Psychiatric Nurses, Psychiatrists, corrections officer, security guards, consumers, and family members like David Kaczynski, who spoke about his sibling experience as brother of the so-called "Unabomber" - though that relationship had so much more to it. David's love for his brother was clear, as was his agony over his brothers' illness: schizophrenia.
When my son Ben was in the first stages of recurring psychosis, when we were waiting for him to get "sick enough" to finally earn a bed in a psychiatric unit (don't get me started on this), we had many encounters with our local police officers while Ben - and we - were in crisis.
I am so happy that these officers were trained in crisis intervention - for their kindness and empathy toward Ben, Ali and me made our traumatic situation more bearable. And - even more importantly - their CIT (Crisis Intervention Training) made it possible to avoid the trauma-upon-trauma pile-up of emotions that could have escalated the crisis instead.
Lucky for us, we did not have to experience needless "super-escalation."
Lucky for us, our town's officers were either CIT-trained, or listened to the feedback and tips of those on the force who were.
To those who have taken the time to learn and choose Crisis Intervention Techniques over "Power" actions that are also an option, I thank you. Your kindness and willingness to empathize has made all the difference for this family.
Here's a radio news story on CIT in Connecticut (my home state) from NPR affiliate WSHU - where I sometimes work as classical music host or newscaster. Mark Herz also did an interview with me on Ben Behind His Voices.
Becoming a Best Seller: The Real Reward
Okay, so not quite a best-seller yet...unless you count being pretty consistently in the top ten in Amazon's Best Seller list in the category ofHealth/Mental Health/Schizophrenia.
Still, the news from my literary agent (Claire Gerus, who is amazing) today, about a year into the book's published life, is a surprise: She actually has a royalty check for us! This, from the woman who jokingly said to me not long ago (at least I think it was jokingly): "Royalties? What are those?".
So. This means the book is actually making a profit for Rowman and Littlefield (after reimbursement for their publication expenses), and hence for me and Claire as well. While this check is hardly large, to be honest, it is a delightful surprise in its symbolism: people are buying, and reading, Ben Behind His Voices.
It also means that more and more opportunities are opening up for me to speak to audiences in person, to meet and collaborate with readers and potential readers - families, providers, doctors, nurses, faith leaders, legislators, media, PAMIS (people affected by mental illness.
And at least it's a start. Someday, I still hope to see the book on the USA Today or New York Times Best Seller List (hey, it can have universal appeal, right? Library Journal called it "A darn good read for memoir fans"...), for now the fact that it is getting into the hands that I suspect need it most is the best reward.
I got a Facebook message yesterday from a woman whose son had suddenly experienced a psychotic break - out of the blue. She said, Someone sent me your book, and I sat and read it during the 5 hour wait in the hospital emergency room while waiting for a bed to be available for my son. Thank you for sharing your journey. We are struggling, but your book has helped me.
Now, that means everything to me. That is why I wrote the book; that is the real reward. The fact that someone I have never met was helped by our story, and then passed it on to another "stranger" who might need to feel less alone and have an idea of what to do next...well, it helps me feel that the messages in our story are getting a life of their own, like a child going out into the world.
So, if you know someone who needs "Ben", please share. You are the messenger. Thank you. With your help, the book will get into the hands of those who will benefit from its story and tips - and maybe, just maybe, get it to the bigger "Best Seller" lists. For then, I will know that the increased "Sales" means that more people will have been touched, enlightened, and perhaps helped by its messages.
What Else is New?: Research, Reviews, Presentations
Quick Updates: (1,2,3...)
1. Ben Behind His Voices Comes to New York City!
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!
Schizophrenia, James Holmes, and Hindsight
I think the psychiatry career of Dr. Lynne Fenton may be over.
Worse than that, she must be questioning whether she could have done anything to prevent the "Batman shootings" in Aurora that killed 12, and wounded many others.
James Holmes: Schizophrenia?
So it leaks out that shooter James Holmes has been in "treatment" for schizophrenia. Big Duh. It was only a matter of time before that was revealed, sadly.
The question, though, is this: what kind of "treatment" was he getting?
According to this PBS Report, and interview with CAROL LEONNIG, of The Washington Post
"(New information) shows that James Holmes, the lead and only suspect in this shooting rampage in Aurora, Colo., was seeing a psychotherapist or psychiatrist in his university where he was a graduate student. She was a very senior psychotherapy director, basically the medical director for the outpatient clinic for mental health treatment for students.
And she was seeing him for some time before this tragic event...Lynne Fenton is the doctor in the case. Her specialty and what she has been mostly researching is schizophrenia."
What has yet to be revealed is whether or not Holmes was taking medication for his schizophrenia, and whether he should have been committed to a hospital stay - whether he "wanted to" or not - if there were any signs of this possibility of violence.
Could Treatment Have Prevented the Tragedy?
This leads us to the issue of "Assisted Outpatient Treatment" well-covered by the Treatment Advocacy Center - so I will say no more about that in this post.
But there is also the issue of James Holmes' family life.
There are those who will point to his parents as the "cause" of his actions - yes, still. But I know all too well how the best parents can feel powerless in the face of schizophrenia - especially in the absence of support and education.
The Grief of Countless Families
Check out this Open letter "To the parents of James Holmes: Our son has schizophrenia; we know how hard it can be" . In it, the family expresses first-hand empathy for the confusion and chaos that schizophrenia can bring to a family.
and this was my response (among many other comments)
Dear Margaret - and family - Thank you for this empathetic, beautifully written open letter. There will be those who do not believe your point of view; perhaps, before my own son Ben developed schizophrenia, I might have been one of them.
But no longer.
Ben is 30, and we have been through the same confusion, shock, grief, and anger as you. Eight hospitalizations later, a few of them as relapse during the recovery period that began when Ben's meds began to restore his brain at last (not completely, of course, but enough to allow a slow thaw from his "frozen in time" state), we are grateful for every small step Ben takes to find a new normal for his life.
He has a job, goes to school and does well, and can - at last - take family trips with us with little fear that his behaviors will scare flight attendants.
It has been a long road, and we still monitor Ben's medications - because in two days without them he will wind up back in relapse. I wish he didn't need them - and perhaps, as he ages, this may change if he is carefully monitored - but right now he absolutely needs this treatment - medication, support, structure, community, purpose and love.
Perhaps if James Holmes had had treatment that works - involuntary, if necessary - this could have been prevented.
My heart goes out to you, and all affected by this senseless tragedy - including the Holmes family, and even James himself.
We are lucky, perhaps, to have Ben back in our lives in such a positive way - but I know that we were helped immeasurably by education (especially the Family-to-Family program at NAMI, and even the website communities like HealthyPlace that provide info and perspective) and by the stories of others - which is why we wrote our memoir, Ben Behind His Voices (which included some resources that saved our family) -Thank you for sharing your story and perspective. Perhaps it, too, will make a difference.
best,
Randye
Depression out of the Closet: The Boss too
Add Bruce Springsteen to the list of celebrities willing to talk about their mental issues.
Springsteen talks about his lifelong battles with depression in a 16,000-word New Yorker profile hitting the stands this week.
Every time someone in the public eye is willing to talk about mental illness, the door opens to acceptance just a bit more, and stigma is dealt a blow.
Ben and I are trying to do the same thing with our book. This week I was thrilled to present "Listen Up! Hearing the Family’s Perspective on Illness " as Interdisciplinary Grand Rounds at Bridgeport Hospital, and honored to receive this feedback:
"I truly appreciated your candor, your humor, and your heart in speaking on this topic. I'd like to think I pride myself on empathy and compassion with all my patients, but I know after hearing you speak, I will double my efforts, all around, no matter the condition. Thanks again for a really worth while and inspiring talk."
To touch another person like that - well, that's the reason I wrote the book and speak out. Thank you.
Yes, right now it is mostly my crusade as Ben's Mom - but someday I hope that Ben will speak out too. I see signs of acceptance in him, but I know he is not ready to say, in public, that he has schizophrenia. That's okay. I will take what we've got, and I know what it takes. Patience. Understanding. Love. And some luck too.
Meanwhile - Thanks, Boss, for your courage and honesty. You've kicked the door open another inch.
Touching Lives : Grateful for the Chance
Mental Health and Disability Issues Affect Us All
Last month, I had the opportunity to speak about to the wonderful folks at PPAL, the Parent/Profession Advocacy League ("The Massachusetts Family Voice for Children's Mental Health") at their annual conference. Our family story wasn't the only one presented; there were also two adults who had, as children, survived trauma and illness and abuse to come out stronger and smarter. Their stories inspired me, and I was challenges to honor their experiences by connecting our family's journey to theirs.
Courage is everywhere.
Support is essential. Sometimes the one right word, at the right time, can change a life.
My hope, always, when I speak about our family's "chaos to hope" with Ben's schizophrenia (and also in writing the book) is that some of our words will be those "right words" for someone else who may be listening to or reading them.
So happy, therefore, to have heard the following feedback from the fine folks at PPAL:
"96.3% of those who completed an evaluation stated they were, "very satisfied" with your information, preparation and understandability. In addition to the ratings, I thought you might like to read some of the written comments attendant to your presentation and I have listed them below.
o "excellent presentation"
o "she was very inspiring and incredible...have her come back again"
o "loved how she shared the journey of her son...realistic, well done"
o "empowering"
o "I loved her sense of humor"
o "outstanding speaker and presenter"
o "Very well spoken. I'm really happy to have heard her speak."
o "empowering/full of empathy"
o "awesome speaker" o "Very informative and inspirational."
Once again, please accept the sincere thanks from all of us at PPAL."
Thank you!! There is no speaking without a listener. My thanks for the opportunity to connect with all of you at PPAL and see the awesome work you do.
Surviving Stigma: Families Speak Out
This training video for NAMI, the National Alliance on Mental Illness, is used to help family members of those with mental illness cope with stigma.
This was produced by Danolas Productions, and I was proud to be part of it. Families who survive stigma can be more helpful partners in recovery (and if the stars align just right...) View the trailer below.
Schizophrenia and "Perception": Will it be Accurate?
Tonight TNT unveils a new series called “Perception” , in which Eric McCormack plays a brilliant neuroscientist with a full-blown case of schizophrenia.
According to the NY Times, here is the premise:
Colorful characters that only Pierce can see pop up to help him solve murder cases he consults on for his spunky F.B.I. buddy, played by Rachael Leigh Cook. These apparitions badger Pierce with what appear to be non sequiturs and useless information until the last 10 minutes of an episode, when the light bulb goes on, and the murderer is identified.
"Perception" and Mental Illness Stigma
The review goes on to say that this is "TV-Fantasy schizophrenia" - so what does that mean? The hallucinations are useful? Cute? Just a manageable feature of a slightly-eccentric personality?
Will the fictional Daniel Pierce take meds? Will he have had any hospitalizations in his past? Does his family stick with him? Does he have friends? Is he stigmatized at all by his illness?
Will this show help spread misconceptions about schizophrenia as a cute illness, handy for solving crimes, rather than an acute illness?
We will have to wait and see. I'm taping it tonight. I've suggested to Ben that he watch it too, but I can see that the idea made him uncomfortable. So that, too, will have to wait.
Stop and Twirl: Recognizing a Good Day
(Portions of this article first published as Stop and Twirl: Honoring Joyful Moments with Happiness on Technorati.)
Last month's travels were mostly for speaking engagements and book signings, but one destination was for VOICE 2012 (a voice -over conference), held at the Disneyland resort. One morning I walked through Downtown Disney, and watched excited families head toward the entrance of the Magic Kingdom.
One of the families had to stop abruptly as they made their way towards the magic. Why? Their little girl, dressed in her princess finery, simply had to stop and twirl, to express her joy and anticipation to the world - and also, I suspect, to feel the thrill of the swishing of her beautiful princess dress.
She was just too happy and excited to merely keep walking. She had to stop and feel the joy. And, by doing so, she marked that moment of happiness not only for herself but for all (including me) who saw her pure expression of happiness.
We all need to do that, I thought. Honor the happy moments, cement them in our memory banks, by taking that simple second to just notice how happy we are. And to share it if we can.
I just returned from Seattle, where I spoke at the NAMI National Convention. The five-day event included many stories of success, but also of heartbreak, frustration, confusion and loss.
The note on the fridge was from Ben.
Yay! I cooked the cauliflower! I added the mushrooms and tofu and used an Indian sauce mix! You can have some. It's in the fridge. Love, Ben
Simple, right? But after talking to so many families whose loved ones were refusing treatment, or whose treatment wasn't working, or who had lost a loved one to the prison system, homelessness, or suicide, that note stood out as a moment of joy to me in its easy simplicity.
Sure, a year ago Ben was in the middle of a relapse. Sure, it could happen again despite all we are doing to walk by his side with love, discipline and hope. Still, right now it's a good day. Ben is in treatment, purposeful, clean and sober, and even employed. He is in the bosom of our family (though he pays rent for his apartment that is so lonely he hates to be there), and even listened to my parting advice to cook and eat the vegetables.
Yes, indeed, a good day. The "other shoe" isn't falling today. So I am grateful. And I'm going to stop and twirl.