NAMI can make a tremendous difference, on levels from personal to political, and ranging from local to national. I have felt it as a Family-to-Family participant, teacher and trainer; I have, I hope, nurtured it as a NAMI National Convention Presenter, and as a writer.
And, as a speaker and broadcaster, I’ve had the honor and privilege to see NAMI in action, in so many ways. As a family member, I know that NAMI helped me to:
learn about and accept my son’s illness
know that I was not alone, and
find ways to turn our grief into advocacy and action.
Nowadays, NAMI serves and can represent those who are living with mental illness as well. Some call those affected by mental illness “consumers”, others say “clients”, or “patients”, or “individuals”…and the debate on the right term may go on. However, the need for respect, individual treatment, understanding and hope remains the much more important issue than finding the right word.
Keynote on Mental Illness: From Chaos to Hope
Last week, I got to know NAMI Summit County, Ohio, when I served as the keynote speaker for their 27th Annual Anniversary Celebration Dinner/Auction, themed “From Chaos to Hope.” So close to the subtitle of Ben Behind his Voices…it had to be fate.
When I get the chance to speak to groups of those who care about mental illness issues as much as I do, I always feel that I learn more than I teach; once again, in Summit County, this proved to be the case.
The audience was filled not only with those affected by mental illness in themselves or a loved one, but also with Crisis Intervention Team (CIT) trainer officers, judges, lawyers, healthcare and social work professionals , politicians, and other friends. I learned about the courage, resilience, and actions of so many, by listening to the recipients of the evening’s Awards: Journey of Hope, Community Recognition, Lifetime Achievement, Heroes Make a Difference.
I met people who had lost a loved one to mental illness and turned their grief into advocacy; I met those living with mental illness who now mentor others in the same situation; I met the leaders of this affiliate, including of course Mel and Helen Reedy, who have spearheaded so many wonderful programs that show what NAMI can do when there is a vision, and it’s properly supported. Continue reading NAMI: How Strong Can an Affiliate Be?
Between the first draft of Ben Behind His Voicesand the final one that went to publication, a few chapters (well, about 100 pages) were on the literary equivalent of film’s “cutting room floor.” Here is one of the “lost” segments, from a NAMI Family-to-Family class I was teaching at the time.
May of 2004
I’m teaching my fourth Family-to-Family series, and this group decides to try something different. They vote to invite the “ill relatives” we’ve been talking about for nine weeks to attend the class on Recovery and Rehabilitation, where a guest consumer speaks. They want their relatives to hear the stories. This is unusual, but this class wants to do it; so tonight we are joined by about five of the people we’ve only heard about since February. Ben is one of them. It feels odd, their presence in the room – one of the most effective things about F2F is that, for once, the family members get to be open about themselves, honest about their own sorrows, frustrations, and hopes. This is the one place where they don’t have to be conscious of how their words will sound to the person whose illness has caused all those emotions.
I, too, feel self-conscious with Ben in the room. Does he disagree with what I’m saying? Will he rebel against the idea that I hope for a “recovery” from an illness he doesn’t yet accept?Will this help him, or set him back?
I watch our guests during the class. Most are young adults, but not all. They listen to our speakers, ask some questions. They offer some insights, and also some resistance. We are, in reality, not expecting to “convince” them, but we’re still hoping something may sink in sooner or later. I know I am. You never know.
The best part of the evening comes, unexpectedly, during the break. While all the family members are inside the room, talking with the guest speakers around the snack table, our relatives have taken their snacks into the hall and are talking to each other. They’re in a circle, and they are talking. I don’t know what they say to each other, but I do know that my heart lifts at the sight.
They are not alone; they are not so different. They need more of that comradeship. They need each other. There are so few support groups for teens and young adults with mental illness, unless they’re in the hospital. Perhaps, like all young adults, what they need most of all is a healthy peer group that can make them feel like a part of something, and can inspire them to take one more step in the right direction.
I plant seeds. I plant seeds of insight and I hope someday they will grow.
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”,
Weeks after the tragedy in Newtown, though facts are still to be confirmed about Adam Lanza’s history, we struggle to understand how it might have been prevented – or, at least, how to help prevent it from happening again.
“Connecticut’s civil commitment laws are among the most restrictive in the nation when it comes to getting help for a loved one in psychiatric crisis,” said Kristina Ragosta, senior legislative and policy counsel for the Treatment Advocacy Center, who serves as the organization’s expert on Connecticut. Ragosta said the law is restrictive in three ways that differentiate it from states with stronger laws.
1. An individual needs to be dangerous before intervention is possible. The standard requires that the individual be a danger to self or others or a danger due to grave disability before commitment is possible.
2. The law provides no option for qualifying individuals to receive court-ordered treatment in the community. This makes Connecticut one of only six states that does not provide the option of assisted outpatient treatment (AOT) as a condition of living in the community.
3. The state’s standard does not take into consideration an individual’s past psychiatric history, such as repeated hospitalizations, and/or symptoms of psychiatric deterioration that could culminate in violence or other consequences of non-treatment.”
I am the mother of a beautiful son who suffers from schizophrenia. “Ben” is now 30 years old, and with treatment is both a student (Dean’s List) and taxpayer (employed in season at a Connecticut tourist attraction, where he interacts beautifully and appropriately with the public).
Without treatment, or when services are cut, he is a patient instead- wandering aimlessly through the halls of a psychiatric hospital until he agrees to go back on his meds. This has happened three times since Ben began his recovery phase – and each time we face the fact that he may never return to us, as there is no mandated treatment, no assisted outpatient treatment, and we his family are left holding the bag and guessing how to help him. Continue reading Mental Illness Treatment Laws: Does Connecticut Lag Behind?
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?
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.
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!