and Laura Pogliano, SARDAA Chapter President and Board member, mom of late son Zaccaria, who was diagnosed with schizophrenia at age 17.
We cover, among other things:
What, if anything, has changed for families dealing with schizophrenia – and what has to happen next to improve the current situation? We touch on: Early Detection and Treatment Need to fund and advance research and find a CURE Four Pillars of Recovery Stigma – is reducing stigma enough? (no!) Schizophrenia as a brain condition, not a psychological issue the sibling experience Hidden Valley Road and the Galvin family current disabled mental health system need for education, NAMI Family-to-Family …and more.
“This Brain Awareness Week, we share Randye Kaye’s story – she is a mother of a son affected by schizophrenia. In her search for understanding and raising awareness of mental illness, Randye spoke with Dr Michael Sand, a Medic and Senior Clinical Program Leader CNS at Boehringer Ingelheim to discuss what is important for future brain research. They also shared insights into how they are personally connected to mental illness.”
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.”
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.
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.
Sometimes I open an e-mail from a reader that not only touches me, but teaches me…and these words, from the sibling of a man with schizophrenia, are in my heart forever. The author has granted permission to reprint his words here, for which I am so grateful – and hope you will feel the same way. I have changed the first names, and added some links, but otherwise this is, verbatim, what has re-inspired me today to continue to seek, and see, the strength courage and beauty in my son Ben. Thank you.
I am writing to thank you for your strong and beautiful book Ben Behind His Voices. I did not want to read it. I borrowed it from a friend almost two years ago and have been walking past it since then. And I can’t exactly say it was light reading once I cracked it open. Ben’s story is so much like my brother John’s. But, with John now 54 and myself 58, it was high time to rewalk the path and get some new perspective. I simply cannot thank you enough for your clear and detailed depiction of your family’s journey.
You do an especially fine job of explaining that tension between trying to help and trying to let be. Also, you truly help readers understand that realization that for a person with schizophrenia, life dreams and plans will need to undergo revision. As Robert Frost’s poem “The Ovenbird” reminds us, the question that needs continually to be asked, about all our lives, is, “What to make of a diminished thing?” One could view the question as pessimistic, but to ask it honestly is actually an exercise in wisdom and courage.
Even though John cannot “compete” for standard definitions of success, he puts most of us to shame in a few specific areas. One is courage. A few Aprils ago I remarked to him on the phone what a gorgeous spring day it had been. He said yes, that he had been out too. He said that he had forced himself to let the bus home go on without him so he could sit out on a bench until the next bus came. “It was hard,” he said, “but I did it.” It was hard? To sit on a bench for 30 minutes on a beautiful spring day? It’s a reminder that, for John, facing the world most days takes the courage of a first responder running into a burning building. But as you so clearly point out, his heroism is not the type to garner honor, gratitude, or even acceptance.
Yet I could speak of HIS acceptance of others, his sensitivity to those who are suffering, his spontaneous generosity.
We talk on the phone a couple times a week. He lives about 90 minutes from me. Yesterday we spoke for about 20 minutes. With your words so fresh in my mind, I was somehow able to enjoy the conversation more deeply. It was one of those moments you talk about that should be cherished for the simple pleasure that it is. Your book did that for me.
I am saying a prayer for Ben.
I love hearing from you, dear readers. Thank you for your e-mails, your comments, and your advocacy – RK
Today’s post comes courtesy of Ben Behind His Voices reader – and fellow Mom and blogger – Kari Larson. She wrote to me about a recent episode of Glee that I had also watched….and noticed Sue Sylvester’s line of dialogue that compares character Blaine’s new interest (talking with puppets) to that of someone “with schizophrenia and off meds”
I had noticed it, but it didn’t really hit me as insulting because…well, hey, this is Glee, where they exaggerate pretty much everything and nothing is really off limits. Everyone acts erratically on Glee, and eventually they usually redeem themselves with some lesson following the farce.
But my son Ben doesn’t watch Glee, so he had no reaction to the episode. Kari, however, wrote about a different experience.
My daughter is 17 and has schizophrenia. She and I have watched Glee since the very beginning and overall it’s been a show that embraces all types of people.
The most recent episodes have really upset us, and I’m wondering if some of the dialogue has come to your attention.
In one episode, the character of Marley is complaining about her ex-boyfriend’s erratic behavior, that he’s nice one minute and horrible the next, and says it’s so “schizo.”
This not only upset me because it was said in a negative way, but because it’s not even correct, further perpetuating the myth that schizophrenia entails a split personality disorder. Untrue.
Another episode — quite possibly the very next one — has Sue Sylvester complaining that she didn’t want school board members coming to the school and seeing “schizophrenia” students talking to imaginary puppets (one character had a hand puppet).
My daughter is heartbroken. I’ve sent Twitter comments to Ryan Murphy (Glee creator), Glee on Fox (official Glee Twitter account) and one of the executive producers. I don’t expect to hear anything back, but I was wondering if any of this has come across your radar.
In her blog(http://ninepillsaday.com/) , Kari adds: “I’m annoyed by two things. One: Schizophrenia DOES NOT MEAN split personalities. Two: Please, unless you, the writers of Glee, are headed toward a fantastic teaching moment, STOP USING THAT WORD. Stop using any form of that word. It’s insulting and, more often than not, used incorrectly.”
What do you think? Glee “just joking” in the way it does for many issues, or stigma to to be protested? Does Sue Sylvester owe us an apology in a future episode?
Let’s talk about the question I get quite often, via reader e-mails, keynote Q & A, or sometimes in the form of a critical tweet or two accusing me of “exploiting” my son Ben by being open about out family’s experience with his illness: schizophrenia.
Am I “Exploiting” my Son by Sharing Our Family Experience with Mental Illness?
No. Because Ben has graciously allowed me to speak.
First of all, Ben has given me permission to share our story, as long as I changed his first name, relay any messages he asks me to, but respect his privacy by not using adult photos or expecting him to go on the speaking circuit with me. These things, I have gladly done.
While not willing to talk about schizophrenia (or even, frankly, agree that the diagnosis is correct), Ben does realize that by speaking (from my point of view as parent), we may be helping other families to cope, understand, and sometimes come back together. So this is something we have done, together, each in our own way.
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.”
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.
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.”
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.