At TEDx talk, Boise teen with bipolar disorder to deliver message: ‘I am not my illness’

Two weeks ago, Eric Walton stood in front of a small gathering and practiced getting a decade’s worth of outbursts, rages, psychiatrists, misdiagnoses, locked wards and jail into a concise 16 minutes.

He wore a green shirt, khaki shorts, one black sock and one white one. He delivered his stories with humor and smarts and poise. He is hoping that his story will help other families whose lives are spinning out of control as they try to make sense of a child’s behavior.

He is that child. Eric, 16, is telling his story of a childhood cut short by a long list of psychiatric diagnoses and at least a dozen medications, four hospitalizations and four stints in juvenile jails before his family found a doctor who knew what was wrong and what could help the boy regain footing in his world.

At 13, Walton was diagnosed with bipolar disorder and put on a daily dose of lithium that is successfully controlling his mood swings. On Saturday, he will stand center stage at the Egyptian Theatre during the second annual TEDxBoise event and tell people what it’s like to live with mental illness.

Although the world will hear his story from him for the first time this weekend, millions already know Eric as “Michael” — the mentally unstable 13-year-old son that Boise writer Liza Long wrote about in her 2012 blog post, “I am Adam Lanza’s Mother.” She penned it immediately after 20-year-old Adam Lanza killed 26 students and staff members at Sandy Hook Elementary School in Newtown, Conn. The post went viral.

Last year, Eric and Long shared a small stage at StoryFort. This year, he chose to go solo. His mother is proud and terrified.

“Even though I have come to understand that advocacy is critical to every part of Eric’s life, at the same time the stigma can be crushing. If people find out that he has bipolar disorder before they know him, they may just see him as his disorder,” she said.

Still, she said that she is proud about how he has managed his illness — and his life. “I know Eric has it in him to inspire others. Not everyone is going to get it. There are a lot of people who still believe that behavior is a choice, not the result of an illness,” she said.

Lost childhood

Eric’s kindergarten teacher had an evacuation plan. Should the blond-haired boy throw a tantrum or rage, his classmates were ushered out of the classroom. They would stay in the hallway until the boy calmed down.

“Everyone would just have to wait,” he explained. “There was nothing else they could do.”

His angry outbursts arrived around the same time as his feet hit the ground running. He was a toddler. His pediatrician told the parents not to worry.

“He’s a boy. He’ll grow out of it,” the doctor said. But this was their second child — and second son — and their first never exhibited the type of behavior that would eventually trigger the implementation of an evacuation plan.

By kindergarten, Eric would come face to face with the first of dozens of mental health professionals. Psychological testing suggested any number of conditions. First, it was something on the autism spectrum. Then it was oppositional defiant disorder or intermittent explosive disorder. Attention deficit hyperactivity disorder was thrown in a couple of times. In fact, one psychiatrist looked over the diagnostic testing and had an “aha!” moment.

“She said that we could be looking at a mood disorder, and then she paused,” said Eric’s mother. “And she said, ‘But that could be so stigmatizing so I am just going to say attention deficit hyperactivity disorder.’”

By 7, Eric was swallowing medications that matched each of the new diagnoses handed down to his family.

“They are great when they work and not so great when they don’t,” Eric said. “I was taking more pills than my grandmother,” he wrote for his TEDx Talk. He remembers being so tired that he would sleep through his classes. Did it stop the violent rages?

“Well, my exhaustion reduced the rages, not the medicines,” he said. “I was violent and uncontrollable.”

Exhaustion wasn’t the only side effect of the medications. He couldn’t focus. He was gaining a crazy amount of weight. He was having trouble with his eyesight. Everyone was afraid of him: his parents, teachers, other children. He was afraid of himself.

“I watched my mom patching holes that I made in the walls of our house,” he recalls.

At 10, he had his first hospitalization on a child psych ward after he kicked in a wall at his father’s house. At the hospital, his violence was met with needles filled with tranquilizers.

“I was so full of adrenalin that their tranquilizers did not stop me,” he said. His mother was allowed to visit at night, for an hour.

Hospital doctors began a new round of what Eric calls “guess and check. Guess what my problem is and throw medicines at me and see if they work.” For the next two years, he would have three more hospitalizations and still he was no better.

At 11, his life in the mental health world would take a turn for the worse. Eric Walton was charged with battery and wound up behind bars in a juvenile detention center. He remembers being so cold. The clothes they handed him were two sizes too big. There was no drawstring to keep the pants from falling to his knees. The string was removed for fear that he might use it to hang himself.

“I was thrown into a tiny slab of a cell,” he said. “There was just a mattress on the floor and a toilet in the corner of the room. I was shivering with anxiety.”

Again, there were even more creative psychiatric terms thrown into his chart. And there were new medicines. For the next two years, his new normal was jail. He had two more incarcerations before he celebrated his 13th birthday.

No one knew when the volcano would erupt. He kicked through yet another wall when he didn’t like the pants his mother asked him to wear. And there was the case of the unreturned library book that was now going to cost $165 in late fees.

That last broken wall sounded an alarm in Liza Long’s head. She didn’t believe that her son would hurt her. But what if…

Help at last

She drove him to the hospital. He tried to open his door while the car was en route. Two days later, she and millions of others around the country read about a 20-year-old man who had killed 20 children in a Connecticut elementary school. He also shot and killed six adults at the school, and saved the final bullet for himself. When police went to the young man’s home later that day they would find Adam Lanza’s mother, also dead from gunshots.

The night of the shooting, while her son was still in the hospital, she sat down and wrote a letter that she would post anonymously on the Internet. “I am Adam Lanza’s Mother,” she wrote. The wrenching letter described her son and the pain that he must be suffering from whatever chemical events were going on in his brain.

“My mother was devastated,” Eric now recalls. “She thought that my hardships were the same as his.”

A friend had convinced her that she should fight stigma by adding her name to the letter. She agreed and overnight became an Accidental Advocate, a choice for which there would be no going back. The blog post made its way around the world. One person who read it was Demitri Papolos, MD, a Connecticut-based psychiatrist who specializes in pediatric bipolar disorder. He tracked her down in Boise and wrote her: “I know what’s wrong with your son,” he said.

She called him. She bought two round-trip tickets to the East Coast. He spent a long time talking to Eric and his mother. He listened to their story. He turned to the young man. “I think you have bipolar illness,” the psychiatrist said. “There are medicines that work and I do believe they will help you.”

Eric was skeptical. “I’d heard it before … ‘I know what’s wrong with you,’” he said.

But he took the prescription — lithium — and went home and waited for the next violent outburst. A week passed. A month. Three months. Six months. Lithium has been in use to treat bipolar illness (then called manic depression) since the 1950s and continues to be an effective first-line medication. It was working for Eric.

“It took me 18 months to piece myself back together,” he said.

“I am different than other people,” he added. “I was raised with everyone fearing me and me fearing myself. I thought that I was a monster. I am here today to tell you that I am not a monster. I have a mental illness. I am Eric Walton, and I am 16, and I have bipolar disorder but I am not my illness.”

A new kid

Liza Long has never given up on her son. “He is such a great kid and it was so clear that this was something driven by his biology.”

Today, her son is back in a mainstream high school and has friends and loves his classes. He’s thinking about heading into college to study psychology and ultimately go on for a post-doctoral degree and do research on mental illness.

He has certain rules that he follows to stay grounded and avoid meltdowns. He takes his medication daily. He says goodnight the same time every night and drinks a gallon of water a day. (Water helps stabilize the lithium.) He sees his psychologist regularly and has learned how to manage the stressors of school and life better than most his age.

“High school drama is nothing compared to what I have lived through,” he jokes.

His mother has gone on to become an advocate for families dealing with mental illness. She’s written a book, “The Price of Silence: A Mom’s Perspective of Mental Illness.” In 2013, she gave a TED Talk in San Antonio, Texas. She spoke a bit about her son. She continued calling him Michael to protect his identity. Most of her talk was about working through the mental health system and the courts to help sick children.

He has given her permission to call him by his real name.

“I have a lot of faith in my kid,” she said. “As a mom it is my job to help him become the best advocate he can be for himself. He’ll be doing it his whole life. He is very brave.”

Long has learned her own tough lessons in navigating and advocating for her son. Looking back on what has happened since her blog post went viral, she’s not sure that she would have put her name on that letter. Shortly after, the court determined that her two younger children were in danger living in the same house as Eric Walton. The children were placed with their father full-time for 11 months. The teenager did not get to see his brother or sister for five of those months.

“It never occurred to me that something like that could happen,” she said. “I had worked with Department of Health and Welfare and Child Protection Services to formalize safety plans for my family. Then all of a sudden the court took my children away.”

This much, and more, she now knows. “Bipolar is a whole family illness,” she said.

This story was originally published March 31, 2016 at 11:17 PM with the headline "At TEDx talk, Boise teen with bipolar disorder to deliver message: ‘I am not my illness’."