In December 2012, when 20-year-old Adam Lanza killed 27 people, including his mother and 20 children at Sandy Hook Elementary School, the nation reeled with grief. Liza Long, a mother in Boise, Idaho, asked herself: What if my son is capable of that?
She came forward in a blog post titled “I am Adam Lanza’s Mother,” that documented her struggles with her own 13-year old son, “Michael,” who suffered from mental illness, and just days before the Newtown shooting, had been hospitalized after threatening to kill her and take his own life. Except for the brief moments when he experienced such rages, he was a sweet kid who loved Harry Potter, she said, and has an IQ that’s off the charts.
The post went viral -- it was picked up by Gawker and the Huffington Post, and racked up 1.2 million Facebook likes. Reactions ranged from sympathetic and grateful -- especially from other parents of mentally ill children who felt alone -- to swift and harsh. Hanna Rosin of Slate wrote a scathing response that accused Long of being an “imposter” and writing libel against her own son, and a feud erupted among other mom bloggers who picked apart Long’s private life, including a messy divorce, citing her previous blog posts.
The highest cost of publishing her post, and choosing not to make it anonymous, was losing custody of her other two children for a time, when it was deemed unsafe for them to reside with a volatile sibling.
Two years later, Long has expanded her “manifesto on mental health” into a book, “The Price of Silence: A Mom’s Perspective on Mental Illness,” that explores a broken system that deals with mental illness with incarceration -- even in the case of children. We can talk about gun control, writes Long, “But what is our obligation as a society to care for people like Adam Lanza? What should we have done for his mother?”
Long talks about the high cost of her blog post, her advocacy work, and how it has led to a much happier, healthier life for her son.
You write that one of the reasons to write your book was to shine a light on the stigma of mental illness -- where does that stigma come from?
I think it takes many forms -- and I had to overcome stigma by putting my own name on the story. That’s self-stigma. It’s especially easy for mothers to be stigmatized, or stigmatize themselves -- because we are trained to make our children’s lives seamless. We want them to be happy, nice, good in school. When that doesn’t work out, we blame ourselves. This was me coming out to myself. I had a eureka moment when I realized that if I had written about cancer it wouldn’t have this reaction -- that’s what stigma looks like.
You received a lot of encouragement and some backlash from other mothers. Is there a tendency to blame moms for issues of mental illness?
No mom wants her child to end up shooting up a school. So much blame has been put on Nancy Lanza, but access to care for a mentally ill child isn’t there. People have the idea that there is help -- I ask people sometimes who they would call in the case of a mental health crisis. If you call 911, the result is usually incarceration.
Mothering can become a competitive sport, and our children can become a visible symbol of worth. We need to give each other some grace. The issue should not be about judging moms but recognizing that there are not solutions for families in crisis. Right now we have chosen to treat mental illness in prison, or not at all. It’s the big social justice question of our time, and I believe it’s immoral to treat our ill in prison.
What’s broken in the system, and what can be done?
If your loved one is having a mental health crisis, often the hospital won’t take her unless she has attempted suicide. If you don’t have health insurance, it’s hard to get access to other services. What happens in our current system is that people are essentially sent to jail because they have a mental illness. It happens with kids and adults.
It’s an interesting experience having four kids, because it makes you aware of how biologically different they are. My oldest child is a concert pianist and rocks tests, the second had been to jail twice by age 13. Maybe I’m a good mom, maybe I’m a bad mom, but I find that dichotomy interesting. If I take them to the same emergency room, they treat a child with a physical ailment one way, and one with a mental emergency another.
As much as a quarter of my income goes toward treatment for my son, and in my own case, a judge ordered that my son was a threat to my younger children, and that he had to be placed in residential treatment. But the state doesn’t pay for that. Even the courts can be willfully ignorant. My frustration is mental health services do not address serious mental illness. Mental health and illness should be separate -- serious mental illness is a biological brain disease, and stop implying that kids with behavioral symptoms are choosing to “act bad.” Autism has made great strides with this -- mental illness needs the same. We need to throw more resources at mental health -- we need correct diagnoses, and we need treatment.
What has all this meant for Michael?
The best thing that came out of going public was a proper diagnosis for Michael. A doctor contacted me and said, I know what’s wrong with your son. That made it worth it. Before that he had received a half-dozen diagnoses and nothing helped. He was diagnosed bipolar and prescribed Lithium, and that was in May 2013. He has not had one violent outburst since then. No threats, no harm. He’s back in mainstream school. Two years ago when I wrote that blog post, I never thought that would happen.
What does he think about the publicity? I heard an interview with you and Michael, and he sounds very bright and articulate and able to talk about his illness candidly.
It’s so funny we just did our first joint appearance webinar for a bipolar foundation, and I was nervous. He was great. We talked afterward, and now that he has the diagnosis he embraces it. He has control, he has answers, he has a path. He feels advocacy is a big part of the solution. This is the way we will change stigma, is people like my son who are so powerful at describing his experience. He says, “I wish people could understand it’s not a disability -- I’m different, not disabled. We’re all a little quirky, right?”
When people get to know Michael they are fine with him. The label of bipolar doesn’t have to be something we can’t get past -- getting to know people is the solution. That goes for moms, too. Even though I had regrets after I posted the essay initially, it was important to put my name on it, I was so completely helpless.
What has changed for you?
I do a lot more mental health advocacy -- I was in Washington, D.C., meeting with legislative directors and congress people to address the mental health crisis. One of the criticisms of the book is that people wanted more memoir, but I was interested in examining the system -- and how it’s broken -- and looking for solutions. I’m profoundly grateful for that.
The people who say thank you outnumber detractors by 10-1 at least. In addition to getting treatment for my son, I’m connected with advocates and “dragon moms,” as I like to call them, who fight for their kids. Making these connections with other family members has been great. I don’t feel alone and isolated anymore. It’s not just me.