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.”
Wow. John Oliver just summed up the problems with our mental health system in 11 minutes and 54 seconds – with plenty of room for punchlines as well. I know – seems like something that isn’t humorous. But this segment provides more respect for mental health issues than so many others I’ve seen. Well-placed humor can do that.
Watch it here:
His opening statement, like all the facts in this comedy-in-truth piece, is correct:
“It seems there is nothing like a mass shooting to suddenly spark political interest in mental health.”
Guilty as charged. My last post was, yes, sparked by yet another act of violence that I suspected would eventually point back to an unaddressed mental health problem in the shooter (and lack of support for his family). After receiving 2 comments which were too extreme to approve, I almost deleted the post today. It seems to have sparked stigma and judgment instead of the empathy and constructive outrage I had hoped to inspire. But I will let it remain in this thread, because while I myself may have jumped the gun on “judging” this shooter with expectations that attention should have been paid to his mental health way before a crisis, I also know that such judgment harms people like my son, who lives in fear that people will find out he has been diagnosed with schizophrenia. (for the record, his name and identifiable facts have been changed in the book and in my posts, with his permission to tell the story that way) Continue reading Thank You, John Oliver. And I apologize.→
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.
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?
Lifetime is premiering a new film this Saturday at 8 PM:
Call Me Crazy – and I can’t wait to see it. I hope you will watch it too.
Here is the description from Lifetime:
Through the five shorts named after each title character — Lucy, Eddie, Allison, Grace and Maggie – powerful relationships built on hope and triumph raise a new understanding of what happens when a loved one struggles with mental illness. “Call Me Crazy: A Five Film” stars Academy Award® and Golden Globe® winners Jennifer Hudson, Melissa Leo and Octavia Spencer, Sarah Hyland, Sofia Vassilieva, Brittany Snow, Ernie Hudson, Jason Ritter, three-time Emmy Award®-winner Jean Smart, Lea Thompson, Oscar®-nominee Melanie Griffith and Chelsea Handler. Laura Dern, Bryce Dallas Howard, Bonnie Hunt, Ashley Judd and Sharon Maguire direct the anthology
NAMI (National Alliance of Mental Illness) is a partner in this broadcast. They have a launched a new stigma-busting initiative as part of the campaign, encouraging us all to share our stories as part of You Are Not Alone in This Fight.
My son has experienced what I later learned is a fairly typical gradual-onset pattern toward full-blown, and heartbreaking, schizophrenia. After years of chaos, we have gone through the stages of family emotional acceptance (NAMI Family-to-Family saved us, which is why I now teach and train others to teach it) and have hope once again – but that hope is always guarded, affected by stigma, caution and some sense of loss.
One saving grace comes in realizing we are not alone. Speaking out about family experience brings mental illness into the light, where it belongs. My book Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope was created in part to open eyes, ears and hearts to the family experience – and get schizophrenia out of the closet so we can work on paths toward mental and emotional recovery.
Bravo to Lifetime – I hope this movie can help us take another step away from stigma and toward empathy, acceptance and solutions.
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.
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”,
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.
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.
“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: