Thursday, August 28, 2014

The Price of Silence

Dear Friends,

This is a humbling day for me. The first time I read a book and realized the power that words can hold over our hearts and minds, I knew that I wanted to write. Today, my dream of publishing a book has come true with The Price of Silence: A Mom's Perspective on Mental Illness, from Hudson Street Press.

But for me, the price of realizing my dream was beyond anything I imagined. I wrote The Price of Silence because like most  of us, after Newtown, I wanted answers. My quest through the complex and often hostile systems that families and children who have mental illness must navigate was personal: I live this experience daily with my dear son.

Kirkus Reviews described my book as "a searing indictment of the lack of affordable care available for the treatment of mentally ill adolescents."

Andrew Solomon, author of Far From the Tree (which everyone should read), wrote: 
In this courageous, determined, radical book, Liza Long exposes the dearth of alternatives for parents of kids with mental illnesses, the shame that attends their perceived failures, and the hope that such families may find their collective voice and demand better options.  I hope her passionate cry is heard far and wide.
I am profoundly grateful to the families, providers, police officers, educators, and advocates who shared their often painful stories with me. It's not easy to talk about mental illness; I know that truth firsthand. And I am especially grateful to my son, whose perspective provides valuable insight into mental illness and how it affects children. His humor, intelligence, and love have made my life immeasurably better. He is not a bad kid--he is an incredibly brave kid (and he just finished writing his first book! At age 14! It's about demigods from outer space).

But today, though I am grateful that so many people are speaking up and sharing their stories. I am also saddened at our inability as a society to act. People who have mental illness, including children, are "treated" in jail or left to die on the streets or by suicide. This is a national tragedy of epic and growing proportions. I feel that we have a moral obligation to care for our children, brothers, sisters, parents, friends, and colleagues who have mental illness.

I hope you will read my book. But more importantly, I hope that you will join me in speaking up for change. Please contact your representatives in  Congress. Join Treatment Before Tragedy. Participate in your local NAMI walks this fall. And share your stories. Their truth is powerful. Together, I know we can make a difference. In the words of one of my favorite poets, Robert Frost:
Only when love and need are one, 
And the work is play for mortal stakes
Is the deed every really done
For heaven and the future's sakes.

These are our children, and this is their--and our--future.

Best to you all!


P.S. If you do want to buy the book, please consider a local bookseller. Here are two of my favorites:

Iconoclast Books
671 Sun Valley Rd W, Ketchum, ID 83340
(208) 726-1564

Rediscovered Books
180 N 8th St, Boise, ID 83702
(208) 376-4229


LH said...

I have been following your blog for awhile but never commenting. I just bought and read your book. What a great read! You truly are a gifted writer with an important story to tell. I will be silent no more.

Unknown said...

I read your article in psychology today. Your son sounds how mine used to be growing up. he was a nightmare and I was always on guard. He would attack me, attack himself. Smash things up. It was at one point that he could only have a bed because everything else was so damaged. Any slight thing I had to change with him, even if it was telling him he had to have a coat on when he didnt want it, would set him off. He was diagnosed with Aspergers in the end which is part of the Autistic spectrum. It was such a relief to know what was making my son act the way he was. I hope your son finds some peace.

Denise said...

Congratulations on your book! I am ordering it and look forward to reading it. You've been a wonderful inspiration and source of information since Cory Martin from BC2M told me about you. Thank you for speaking up. I know it wasn't easy, but you've inspired me to do so, too.

SL said...

Thank u for speaking up.

Unknown said...

Congratulations on the success of your book! I am excited to read it, as I am with all your post. To have someone as talented as you with connecting with your audience is amazing. You are a great instructor and I hope you and your family the best!

jen said...

I heard your interview on NPR this morning and I cried for your pain and my own. I have a grown daughter who has suffered with many of the same issues as your son without the diagnosis. She is mentally "challenged" which seems to be a convenient umbrella so no one has to look too closely. I've had to fight for the smallest service and the more I tried to advocate for her, the more I was labeled along with her. I had a school try to put her in a class with children much more capable because they had no class geared towards her, nor did they have any person able to deal with her issues. So rather than create a IEP, they ridiculed me for not wanting her to "succeed". Her behavior was out of control to the point that I had to have her placed, but only after I pretended I would harm her since that was the only way I could get her help and keep her safe since neighbors would bully her, spray paint the house, and try to drown her at the local pool. Sometimes, it's not your child that is the dangerous one.

Anonymous said...

My mother called me this evening to tell me she had seen a preview of your talk with Dr. Oz. That mother, she said quietly, described you as a child. That was you.

Ms. Long, I am 47 years old and have battled to live a balanced life with bipolar for many, many years. When I was younger, I was just a "bad child." In teen years, they were all convinced I was on drugs. I was not. I was "simply" a teenage girl with undiagnosed mental illness.

Today, I write about my battles with mental illness and its stigma on my blog I am active in advocating for a better mental healthcare system in the United States. Unfortunately, I am also a survivor of domestic abuse (endured because my mental illness made it that much easier for me to believe I deserved it).

Thank you, Ms. Long, for your bravery and your voice in the mental health community. Much hope and courage to you and your dear son. Our world needs many more voices like yours.

Dawn said...

My sister just called me and told me there was a story on Dr. Oz that sounded much like mine. She gave me your name, I Googled and here I am. My 15 year old son sounds very familiar to your son. My son was diagnosed with Aspergers, ADD and ODD. He is on five different meds, which don't seem to be working. When he is not raging, he is the sweetest, caring boy. When he gets angry - watch out. We have called the police; been threatened; hit; scratched and yet we have no where to go. I am at a loss on what to do with him or us.

MOLLIE'S MOM said...

Hello Liza,
Before I comment, I wanted to respond to the first post by ce8d632....
While I agree that most bipolar diagnoses today are bogus and medically induced by medications that are commonly prescribed for ADHD, depression, anxiety and the disorder dujour, there really is a clinical and organic brain bipolar disease that only responds to Lithium and I've had two dear friends in my life who suffered from this very frustrating disease. Both of my friends were successful- one becoming a Clinical Psychologist and the other, a professional photographer.

ADD/ADHD dx is truly one of the most heinous crimes ever perpetrated against children. I was one of the first teachers to work with children who were diagnosed with ADD in the early 80's and even then, I realized these children were not disordered. These were exceptionally bright children that needed a more developed and interactive learning environment. I spent most of my classroom time outside with my students. I didn't teach from a syllabus or guide, I taught concepts through conversation- not bits of isolated information for rote recall. These were children, like myself, who thought in terms of practical application and needed to know the who, what, where, when, why and how's of everything. They were deep thinkers that questioned everything. They were the Einsteins of our future. I was further inspired by the creator of ' All Kinds of Minds'.

Liza, I watched your interview on Huff Post this morning and your frustration, passion and concern was palpable. I will spare you all the specific details of my own experience with a mentally disturbed husband but I'll just say that he never received therapy as a child and his current therapy has caused other problems that have forced me to make the decision to leave. I've lived in hell for 18 years with his disease, always questioning and always trying to help but I'm so worn down, so isolated now and I must take care of myself at this point. There's nothing I can do to help my husband and I can't physically, mentally or emotionally tolerate anymore abuse. I use the word, abuse, literally and not as a rhetorical description of what I have endured. I've lost everything except my own mind (I've even questioned that at times as well).

There is a lot of incompetency and corruption in the mental health system in this country that needs to be addressed. No one talks about the cultural and social and economic/corporate elements that contribute to the epidemic of mental illness and disorders that plague America today. No one addresses the issue of the over-prescribing of psychotropic medications, how schools receive funding for diagnosing and medicating children for ADHD, how these inappropriately used medications have contributed to violence and caused nutritional deficiencies that also contribute to violence. We live in a dog eat dog world where violence has become attractive and acceptable and even lucrative for corporations. Who wants a gentle peacemaker as a CEO?

Drug companies, insurance companies, federal funding agencies and corporate interests all benefit from drugging our children. Please watch Gary Null's documentary
It's truly heinous how children are being used to increase profits and funding while standards of education and care are being continually degraded. How many Einsteins have we drugged into complacency? We have a serious problem in this country that results from busyaholic parents who haven't time to parent their children, dehumanizing technology/artificial intelligence that replaces quality human relationships and of course, the corporate greed that considers us all disposable temporary commodities.
Human life and health should never be compromised by greed. Take the profit out of medicine and maybe we'll actually get proper healthcare.

Alan Barta said...

Congratulations on your book! I purchased a copy and have a long plane ride tomorrow so I will read it then. THANKS!

Anna said...

My son is eight and he is just like Micheal. When I divorced his father who left me alone to deal with him most of the time I told the judge my son needed an inpatient program. The judge thought I was calloused and took all my rights to the child I have cared for and tried desperately to help since he was two years old. His father has full custody and believes he can "discipline" his problem away. He's already been suspended from elementary school for threatening others' lives several times and has talked of killing himself since he was five. I have no say in his treatment and am afraid to take him during my court ordered visitation because he is so violent with other children. It also may have cost me custody of my twelve year old daughter. Thank you for sharing your story. Although my heart is broken for my baby, there is some consolation that I am not alone.

Unknown said...

I am a bipolar mother of 4. My oldest was diagnosed when he was 17 after 16 years of uncontrollable rages he wouldn't remember. He asked for help when he pulled knives on his best friends. My other 3 have issues also but thank god don't have the extreme rage, they are more Likely to be depressed or talk a mile a minute with no concentration. Their father doesn't believe there is any thing wrong. I have spent the last 5 yrs trying to educate the schools that the kids aren't trying to be defiant that something takes over and they can't control it. My oldest is now married to a wonderful girl also bipolar. Living with 6 of us with issues isn't easy but we know we can talk and be ourselves. Thank you for your articles and book. It's nice knowing some of us aren't hiding what we are anymore. It can be lived with and we can have a great life if a little unconventional. I hope my grandson due in a month doesn't develop it but if he does he will have a huge support group. Mental illness shouldn't be a disgrace it should be learned and accepted. My ex doesn't believe it but he also doesnt see how bright and loving and special they are either so it is his loss not ours.