Felesia Otis says it's hard to pinpoint the moment when her son Keaton became mentally ill. As a Benson High School student he had lots of friends and loved life.
Keaton was artistic, interested in photography, graphic design and poetry. After leaving school, he designed and produced tee-shirts and jackets. He also lived with cousins in Canada, for a couple of years.
Eventually, he planned to go college and get a degree. But gradually, in his early 20s he slipped into psychosis.
Experts say that three in a hundred of us will experience psychosis, but with the right care and support two out of those three will completely recover. For Keaton, the struggle was only beginning.
"He could do all the normal things – he could go to the store. By the time we realized he was starting to lose touch with reality, and he was going to need some help, he'd been struggling for some time."
Keaton had always had a suspicious streak, Otis says. The family would even tease him about it. But from an endearing character trait, Keaton's suspicion morphed into paranoia. He began to spend more and more time alone in his room, even avoiding friends and family.
He would worry if a strange car parked across the street, or if anyone came to the door.
"It was subtle little things. We'd dismiss it as just Keaton being a little paranoid," Otis says.
Because Keaton was talking less and less, it took a long time before his family realized he believed people were tunneling under the family home and spying on them.
"The more unsafe he felt and the more anxious he was, the worse his delusions got," Otis says. "As a family member, you're just in shock because it's not rational for your child to believe that.
"He wouldn't see his aunts and uncles; he wouldn't see anybody. He had really changed," Otis says. "He stopped talking. He wouldn't say much more than a sentence. It's like you don't recognize them when they get to that place. They're so not what they used to be."
Signs along the way had pointed to Keaton's vulnerability to psychosis. He had attention deficit disorder, which increased his stress at school. At 14, he asked for help because he realized he was depressed. Depression, anxiety and mood instability increase the risk of psychosis. Unfortunately, the doctor he saw had the mistaken idea that adolescents don't get depressed.
"Provider lack of knowledge is a whole other issue," Otis says.
Keaton eventually did see a psychiatric nurse practitioner and agreed to try medications. But without health insurance, no other services were available. He had to apply for a "scholarship" to get medication and his choices were limited to samples. The ones he tried had unpleasant side effects and he felt that they interfered with his ability to be an artist.
"It turned him off to the medication," Otis said.
Otis says she wishes she had been able to contact a program like EASA, which supports youth going through a first psychosis and also works with families.
"You have might have one opportunity to get it right so you want to make sure it's the best opportunity at the best time. To me, I think EASA would have been the right thing for Keaton."
Support outside the family is essential, Otis says, because a young adult won't tell his parents everything. And it is easier for a professional to suggest treatment.
"They can take on that difficult role of helping that young person weigh out their choices," she says. "And if they get too ill, then they can look at hospitalization. So that takes the family out of that struggle and allows them to be the loving support they want to be."
The mental health system is so broken that families can't get help, Otis says, even when their loved ones are as ill as Keaton was. When sufferers are so caught up in their delusions that they don't realize they are ill, (a condition called anasognosia) they can refuse treatment unless they meet the criteria for involuntary commitment.
Legally in Oregon, that means they must be so ill they are dangerous to themselves or others, or at imminent risk of death because of their illness. In Multnomah County that law is defined very strictly.
So when Keaton stopped eating and dropped 50 lbs– at 6 foot 4 inches tall he was 145 lbs – the family was told he still did not meet commitment criteria.
Soon after, tragedy struck. On May 12, 2010, Keaton was stopped by police when driving. A gang enforcement officer decided he might be a gang member after seeing him looking in the mirror and noting he was a young Black male wearing a hoodie on a warm day.
Keaton's father, Fred Bryant, questions the rest of the official story. What's not under dispute is that police shot and killed Keaton in his car.
In June 2011 The Department of Justice launched a civil rights investigation into Portland Police Department's officer involved shootings of people with mental illness.
Keaton's family was still trying to get help for him when he died.
Felesia Otis and her husband Joseph Otis are determined to push for change. They are creating a nonprofit, Friends of Keaton, which will offer support and education to family members of people with psychosis. The group also will advocate to make sure Oregon's healthcare exchanges include prevention services like the EASA program, that provides support and wraparound services to help people recover.
Psychiatrist Neil Falk, who works with EASA in Multnomah County, says three out of every hundred people will suffer from a psychosis, but two of those three will recover completely with support. Psychosis generally strikes young people between the ages of 15 and 25.
The one in a hundred people who develop a lifelong psychotic illness usually can learn to deal with the symptoms and build a normal life, Falk says.
As clinical director with Volunteers of America's prison re-entry program, Otis understands the intersection between the mental health system and our jails.
Mentally ill people should not be ending up in jail, she says, because they are too sick to know they are breaking a law. But since they often do go to jail, treatment should be better coordinated.
"If you know someone is bipolar, and you send them out of jail with no services and no way to get meds, or just a week of meds, then you're setting them up to fail," she says.
The Otis family has heard from other families whose experiences mirror their own. One family spent $20,000 getting power of attorney, simply to get a loved one into hospital. But once released, he rejected them and disappeared.
"He doesn't trust them now because he's equating them with the hospital," Otis says. "That is a position no family should be in, but it happens all the time."
A lot of problems –and expensive long-term treatment – could be avoided through prevention and early intervention services such as the EASA program, Otis says.
"If we could rethink how we deal with psychosis and be proactive not reactive, we would not wait till people's lives have totally fallen apart so we can help them piece it back together."
Contact the EASA program at: 503-988-5870
Or through the 24/7 crisis mental health line: 503-988-4888