Waiting for him to figure out what is best for him.. what is safe for him… that he even has a serious mental/brain illness… will never happen.
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?
Thanks to North Shore Schizophrenia, for their review!
The story of Randye Kaye’s son’s descent into psychosis and the long road to recovery reads like a diary, complete with dialogue, commentary, and an account of her own emotions as each incident and turn of events unfolds. You would think the attention to detail would weigh down the reader, but it has the opposite effect. It carries the reader along.
If you’re someone who has watched a member of your family fall ill, it will also
bring you to tears – not tears of sadness but, if there are such things, tears of
delight at how she got things so right. There’s a fair chance that in reading Ben
Behind His Voices, which is told by Kaye in the first person, you will be reading
your own story as well. Continue reading North Shore Schizophrenia Society’s Review
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!
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) Continue reading The Refeathered Nest: Not So Empty. Not Just Us!
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.
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.
Gina Gallagher is co-author with her sister Patricia Konjoian of Shut Up About Your Perfect Kid: A Survival Guide for Ordinary Parents of Special Kids. I first saw this book at NAMI’s 2011 National Convention in Chicago, and found it full of useful and realistic information to go with the catchy title.
The authors also write a Shut Up About Your Perfect Kid blog , and I highly recommend that as well.
Since Ben Behind His Voices will be at this year’s NAMI Convention in Seattle, I hope to find Shut Up About Your Perfect Kid available there once again, right along with mine. I could have used this book when Ben was going through frightening changes that shook my parenting confidence to the core.
Here are some things not to say, according to the authors (details in their book and blog):
1) “I don’t know how you do it.“
2) “Give me your kid for a week and I’ll whip him in to shape.”
3) “You poor thing.”
4) “I’m so lucky, my kids are healthy.“
5) “If that were my kid, he’d be different.”
As the mother of an “imperfect kid” whose imperfection happens to be gradual-onset schizophrenia which began in his mid-teens, I have been on both sides of the fence; I went from proud Mom (though I like to think I didn’t brag) to confused/embarrassed/guilty Mom, and back to proud Mom with a new set of criteria for my pride. If you need a friendly, realistic and exceptionally empathetic and informative guide to how to maneuver your way through the world of “Perfect Families”, I highly recommend this book. Check it out!
January 4th already. Happy New Year, 2012! Always a good time to look back – but not for too long. Also an exciting time to preview what’s possible, as well as planned, for the new year.
In our family we do a “year in review” of our own as we approach New Year’s Eve, and certainly tops for me in 2011 was the publication of Ben Behind His Voices, hardcover and audiobook, and all the opportunities that has brought with it to reach families, healthcare professionals, and PAMIs (“People Affected by Mental Illness”, the best term I can come up with so far) with its story, information and messages. This year I have been privileged to present at the APNA (American Psychiatric Nurses Association) Annual Conference, sign books at the US Psych Congress, attend and do a poster presentation at NAMI‘s Annual Conference in Chicago, and connect with so many wonderful readers at author talk/book-reading events for NAMI, RJ Julia Bookstore, Barnes and Noble, Written Words, Congregation B’nai Israel in CT, Fellowship Place, Laurel House, and many more (see “News and Events” for details). Continue reading Looking Ahead, Reflecting Back: BBHV 2011, 2012
There is so much potential, creativity, intelligence, and a wealth of new perspectives to be gained by being open to those affected by mental illness. One wonderful example is the aptly named Open Hearts Gallery in South Carolina.
THE OPEN HEARTS GALLERY IS A DYNAMIC GALLERY FEATURING THE TALENTED ARTWORK OF PEOPLE WHO LIVE WITH OR HAVE RECOVERED FROM MENTAL ILLNESS. ART IS A POWERFUL REPRESENTATION OF THE PERSON WITHIN – HIS OR HER PAIN, RECOVERY, AND TRIUMPH. THE GALLERY SERVES AS A BRIDGE TO COMBAT STIGMA AND AS A REMINDER OF HOW RESILIENT AND SIMILAR WE ALL ARE.
Check it out. You can also order prints by going to their “contact” page.
Can we open our hearts to those with mental illness? Of course, as the mother of a wonderful young man who also has schizophrenia, I am going to say yes – still, as you know if you have read Ben Behind His Voices, there were times when I felt I had to harden that heart in order to survive emotionally. The journey to return to an open heart toward Ben was not without challenges; my book pays homage to the obstacles as well as to the results of the lessons of love, respect, and possibility that we eventually learned.
But, still – there is always another view. I recently has a conversation with someone whose heart was shaped by her own experience as parenting Ben has shaped mine. In his case, he had been stalked by someone whose mental illness was allowed to go untreated. Untreated! That can be the difference between love and fear, between open hearts and a mind forever closed. And I can’t say I “blame” him. How could I? (for more information about “Eliminating Barriers to the Treatment of Mental Illness”, see the excellent website Treatment Advocacy Center.)
So, while most react to my story with gratitude, this person was cold to the idea of someone with schizophrenia being vulnerable, lovable, capable, and worthy of respect. I hope, perhaps, that hearing our story might loosen his heart just a bit. Stories, and art, can help do that.