Ten years ago, I toured a community with the following mission:
To serve adults living with mental illness by offering a full range of therapeutic support and rehabilitation services that promote independence, wellness, and a meaningful life.
This community is called Fellowship Place, and it represents what can happen when people come together to look past medical treatment alone – and add housing, purpose, structure, and community to the picture.
At the time, I wished Ben might be interested in living in such a caring, well-thought-out community. He wasn’t. But now, ten years later, he is open to the idea.
The only problem is: it could take a decade before a place opens up. I wish I’d put him on the waiting list ten years ago. It might take that much time.
My son. He is trying to hard to get his life back. If he weren’t trying so hard, maybe then I could detach – let go just a little bit more than I’ve already trained myself to do.
But it’s heartbreaking. For me, sure – but mostly for him.
The trouble with regaining some sanity (or sobriety, for addicts) is that your vision, when examining your life, clears. That, unfortunately, can hurt like hell.
I can feel why, sometimes, it may feel easier to just fall down the rabbit hole of non-treatment and go back to a problem that’s more familiar: getting out of the hospital.
Square One (or two, or three), when you’ve climbed so far ahead of it in the past, is really a hard spot to land back on. Ouch.
The trouble with regaining some sanity (or sobriety, for addicts) is that your vision, when examining your life, clears. That, unfortunately, can hurt like hell.
That’s part of why a fresh obstacle to Ben’s renewed recovery journey (after the Covid-19 fall) is now: getting clean. He has returned to smoking pot – never a good sign – which brings all the usual “side effects”: lies, denial, the illusion of accomplishment, poor decisions, loss of money, lack of motivation.
The first signs were during a home visit – halfway through a fantastic visit, after Ben “took a walk to Starbucks”, he returned home completely stoned. And denying it. I took him back home and told him he could lose his placement in the group home, and also I would not be allowing him to visit until the truth – and a plan of action – came through.
One day later, a very contrite Ben called to apologize, in tears, and ready to tell the truth and “get clean”…and he did – for 35 whole days. He even went to meetings, and shared for the first time ever. Yeah, maybe “it’s only pot”, but for Ben it spells disaster.
Then…a relapse. He took 2 hits from “some girl on the street corner” (after refusing once, but then he caved) because “I thought it wouldn’t really make me seem stoned, and it might make me feel better about my life.”
Another call from his Group Home.
Another frantic message of denial from Ben
He can lose his housing. He lost his home visit. I feel stuck in a cycle of Groundhog Day-like repetition.
I gave Ben a day to come clean with the truth – and he did. We talked for over an hour. He is so angry with himself. He regrets giving in to temptation. He says all the right things…but he has said them before.
Still – what breaks me apart are two things: his voice, cracking with tears and emotion (rare for those suffering with schizophrenia), and his statement:
I’ve often wondered what treating patients with SMI (Serious Mental Illness) is like for medical professionals. I want to know, too, what the intake process is like for clinicians, and whether they feel as frustrated with the system as we family members do. This book answers these questions, and more.
Through it all, author Lynn Nanos, L.I.C.S.W., shows such concern, knowledge, and caring for people like my son Ben (who is diagnosed with paranoid schizophrenia), that I kept wishing she were on the team treating and caring for Ben right now.
I had to sharpen my pencil several times, I underlined so many facts and observations.
Five Shocking Facts
Five things that either stuck with me or surprised me – and, after nine hospitalizations for my son Ben, I thought I knew it all…
Often the “easier-to-manage” psychiatric patients get admitted, instead of those who need the help the most, because they are cheaper and less difficult to manage. Those admitted include “malingerers” who just want to get off the street for “three hots and a cot” and can fake psychosis.
Connecticut (where I live) is one of only three states in the U.S. (along with Maryland and Massachusetts) that do not have laws allowing AOT (Assisted Outpatient Treatment), something that most definitely would benefit my son.
Yes, untreated schizophrenia can increase the incidence of violence. And often, when the voices tell a schizophrenia patient to harm someone, it’s someone they know…and usually love.
Regarding RLC’s (Recovery Learning Communities, often staffed by “peer specialists who endorse the possibility that signs of psychosis are normal”): ” Researchers found no significant benefits…to help the seriously mentally ill population”- of which my son is one. I live in fear of those who would try to “teach” him to get off his meds. And yet the government allows antipsychiatry to infiltrate programs it runs. (Chapter 18)
Why do psychotic people not engage in treatment? Nanos lists 17 reasons, and “stigma” was not among them. She argues (backed up by research) that stigma is overrated as a reason to not seek treatment for the seriously mentally ill. She says not one patient has ever mentioned that as a barrier to seeking help.
I am a firm believer in the possibility of Recovery in Mental Illness.
Does “recovery” mean “cure”? How I wish it did – but, at the present time, it means management of symptoms, and it means rebuilding – of one’s life, and also of neural pathways.
I have watched and guided my son Ben through a decade of recovery – the ups and downs, the crises and the careful restoration afterwards. What this has taught us is that there are four cornerstones to the foundation of the recovery process:
Medical Treatment (whatever that means for each individual)
Since the publication of Ben Behind His Voices two years ago, there have been three additional steps in Ben’s recovery process. One is that he now is employed, and has been for over two years. I’ve written about this in past posts if you want to know more about that (but it has strengthened the Purpose and Structure cornerstones). The second is that he now rents a room from us, his family. After eight years in a group home and then system failure (also a subject of past posts), home is the best place for him right now, as we continue to hold onto support systems for case management and the path to greater independence for Ben in the future. This experience has also added strength to the Medical Treatment (we supervise meds) and Community/Love corners.
The third change is the one that has also been a surprising boost to that cornerstone of Community. Ben’s life now includes friends – including one that currently also rents a room from us, someone Ben met at school. This friendship had brought out a lot in Ben that seemed limited before: talking about relationships, taking bike rides through the woods, hiking, playing card games and video games that are not solitary. For the first time in over a decade, I hear the sounds of laughter, cheers, and cars in the driveway as other friends come over to hang out. And, yes, at last, with some of these friends, Ben can say “I’ll be right back. Just gotta take my meds with my Mom.” A miracle.
Wow. Socialization over Isolation. Yes, please.
The Jani Foundation is championing this cause by planning events for children with SED (serious emotional disturbances) to relate to each other – to provide community where they don’t have to feel isolated. (Jani is the subject of the book January First (written by her father, Michael Schofield), and the follow-up airing of “Born Schizophrenic”. They have created this t-shirt which echoed my feelings about Ben’s recovery. Socialization, especially in places where you don’t have to always feel “different”, is vital to the process. I learned this in 2001, when I was allowed to attend a meeting of Schizophrenics Anonymous. This excerpt from Ben Behind His Voices tells the story:
“I once attended, in 2001, a meeting of Schizophrenics Anonymous. This group is based on principles similar to the twelve steps of Alcoholics Anonymous. After a lengthy conversation with Charlie, the founder of the local chapter, I was granted permission by the group to sit in. The week I went, there were about seven or eight people attending, in various stages of recovery. They asked me to share my perspective as the mother of someone with schizophrenia, and they spoke of their own paths toward recovery. Afterward, we all went out for pizza—because, as Charlie told me with a smile, “We need to practice socializing, you know.” They got the joke. “Besides, the pizza’s only two dollars a slice,” said Bill, another group member. I loved these people. They even joked about their past. They shared a genuine laugh over things they had once believed about themselves: that they had “known everything,” that they were meant to be elected president. This was the first time I had ever heard these stories told with any humor inside the tragedy. It felt like the ultimate acceptance, being able to laugh with each other about it. They had found community, and they had found laughter.”
The feeling of community can also happen in Clubhouses, programs where members are given purpose, and not just a “place to go”. People with mental illness, like all of us, have times where they need to be alone and regroup. But too many are isolated too often – as are their families. I have spoken with Jani’s parents, and even though we have never met, we share a bond. So do Jani and Ben. They just may not know it yet.
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?→
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!
“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:
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.
Best Mothers’ Day gift ever: the Miracle of Ordinary. Just a simple family dinner for 5, out on the deck, with everyone trying hard to do it all without my help (and me trying hard to stay out of the preparations, not always successfully but close!) Cute. Sweet. In a MasterCard word: Priceless
Why? So much to be grateful for – happy marriages for both me and my daughter, the end of school finals (i.e. stress) for my son-in-law and son, sunshine, food on the table, etc. – and another Mothers’ Day with my son with us instead of in the hospital.
In the past few weeks, I’ve met many amazing Moms. One of them is Claire, whose daughter Rebecca also lives with schizophrenia, as does my son Ben. Their story is included in the documentary Living with Schizophrenia (click to view it for free), which is one of Hope and Recovery – when treatment includes the right medications, love of family and community, and healthcare providers who treat the human being, not just the illness, in a partnership of open communication.
Last night I had the pleasure of being the keynote speaker for the Kennedy Center Inc Annual meeting. The theme was inspiring:
Create Hope, Celebrate Potential.
The Kennedy Center staff does so much to do just that, from educational programs to support services
like job coaching, to residential programs and more, helping families when hopes and dreams have to be adjusted due to a disability diagnosis – in utero, at birth, because of an accident, or (as in our case) as a child develops.
We cry our tears; then, if we’re lucky and well-guided, we wipe our eyes, pick up the pieces, educate ourselves, find a new community, get some support and new knowledge, and learn to understand our “new normal.” Then we adjust. And accept. And, eventually, appreciate the joys in this “new normal.”
None of this happens overnight. It takes time (and the “SEARCH” elements I talk about – support, education, acceptance, resilience, communication, and hope/humor) to get to that new place.
And it takes time and patience.
But none of this – none of it – can happen without first addressing the problem of stigma. Especially where mental illness is concerned – because we can’t always bring ourselves to see it, visually or emotionally.
Kenton Robinson of the Eastern Regional Mental Health Board wrote a beautiful, heartfelt piece about his experience with family stigma that almost had tragic results for one of his former 7th grade students:
Depression, bipolar disorder and schizophrenia are illnesses, just as diabetes or heart disease are illnesses, but they are still viewed by many as the victims’ fault. That stigma makes people ashamed and afraid, and it prevents many from getting the treatment they need.
Shame was part of our initial reaction until we learned better, through NAMI (I became a family-to-family educator and trainer) and through hearing stories of others. I wrote our book hoping it might save a family as ours was saved – and, possibly, save a life.