Navigating A Fragmented System
Recent shooting tragedies around the country have raised questions about our mental health system. One of those questions is: Where do you go when someone in your family has mental illness? This is a story of one Seattle family’s journey for help and the lessons learned along the way.
Making The Diagnosis
Jon Buckland is counting the number of sea corals in his fish tank. He’s been collecting them since last summer. “It’s pretty cool when you turn off the lights,” he says. “It looks like everything glows in the dark.”
Collecting sea corals keeps him busy. Watching the sea creatures relaxes him; there’s always something interesting happening.
“I get to watch the ecosystem do its thing. There’s hermit crabs in there; they get in fights with each other. It changes throughout the day like a screen saver on a computer.”
The world in the fish tank appears quiet and calm. It’s a sharp contrast to the world that lives in Jon’s head. That world is filled with noise.
Jon was diagnosed with schizophrenia at age 17. He’s 30 now.
He says the noise in his head sounds like conversations in a loud, busy bar.
“It’s like throwing that whole bar, and what you can’t control, into one moment inside your brain during that time that you’re still trying to hold a conversation normally outside your head.”
And the noise is constant.
His mother, Trez Buckland, says Jon was a normal, active teenager. She admits he was on the wild side and used drugs. One day he got a threatening phone call related to his drug use. That scared him so much that he stopped using.
But after that incident he started complaining about more threats. He told his parents there were people outside the fast food place where he worked after school, waiting to kill him. “I would actually drive to his work to see if people were watching for him.”
Trez didn’t see anything or anyone wanting to harm him. But Jon’s complaints persisted. Trez says “it became apparent that what he was experiencing and what I was noticing were really different.”
So the family took Jon to a psychiatrist. The doctor determined that what he was experiencing was schizophrenia. It wasn’t related to his drug use. Research shows that the disorder is primarily caused by genetics and the environment.
The psychiatrist prescribed anti-psychotic drugs to control the voices in Jon’s head. His mother thought medication would take care of the problem. She says the family decided, "dang, you might have this diagnosis, but it doesn’t mean it’s the end of the world. We’re going to barrel through and you’re going to do fine.”
Living With Schizophrenia
Getting back to regular life wasn’t easy. The medication controlled Jon’s hallucinations and delusions. But it also made him extremely tired and sleepy. Some days he slept 16 hours. He started missing school. Trez ended up home-schooling him.
Eventually Jon’s life got back on track. He graduated from high school. He found work and made a living. But his struggles with schizophrenia continued. He started using drugs again. Trez explains that one of the negative effects of the disorder is not being able to interact well socially.
“And so it puts you in a position where you’re having difficulty establishing friendships and relationships," she says. "Unfortunately, the drug community is always open to friendship. So it can be a hard lure to back away from.”
A Vicious Cycle
Jon’s situation is not uncommon. Studies have shown that people with schizophrenia are more likely to have alcohol or substance abuse problems than the general population.
Trez discovered that this dual problem of mental illness and drug addiction makes finding help even harder. She looked into drug treatment programs that advertised help for both problems. But when she tried to get Jon signed up, she was turned away. “It was like, 'we work with people with bipolar and addiction, but schizophrenia and meth addiction, we don’t that. Go get the schizophrenia taken care of first.'”
So they went to psychiatrists who specialized in treating both problems. But they were told Jon had to take care of his drug addiction first. “It’s like a hot potato being thrown back and forth. So, how do you get help when you’re told go take care of the other problem?”
Trez says they couldn’t find a program that dealt with Jon's drug addiction and his mental illness at the same time. They were so frustrated that they decided to take matters into their own hands. Jon's parents set up a system of conditions and rewards. If Jon stopped using drugs and took his medications he could live at home. It was rough. There were weeks when he lived on the streets. Without medication Jon was agitated, fearful and stressed.
The Missing Link
Eventually Jon got back on his meds, but something was still was missing. Trez had been looking for a counselor. Even though medication provided relief from hallucinations and other symptoms associated with schizophrenia, counseling was also important. She wanted Jon to get help managing the emotions and day-to-day stress of living with a disorder. But in her search, it was hard to find professionals who were willing or able to work with people with schizophrenia. “Most practitioners have said, 'I don’t have that skill set. I don’t want to promise you I could be helpful and charge you money when I don’t have much experience working with individuals with schizophrenia.'”
The Bucklands finally found a counselor last June. The counselor works with Jon, and every other week his parents join him. Family therapy helps Trez and her husband learn ways to interact with Jon, and ways to support him.
“You don’t get a manual when you become a parent," Trez says, "and this is what you do if your child is diagnosed with schizophrenia.”
Jon has been clean and sober for nine years now. He finds support through Alcoholics Anonymous meetings and National Alliance on Mental Illness Greater Seattle. He lives with his parents. Still, living with schizophrenia is a daily struggle. The voices in his head never go away. They don’t get quiet. Jon explains his brain this way: “Because it’s schizophrenic and different than everybody else’s brain, it’s constantly on a mission trying to find a definition for itself that nobody understands." Jon says all that work his brain does is like a job in itself.
The family’s experience motivated Trez to start a support group for young adults with schizophrenia. She wants a safe place for them to share their stories and to feel accepted.
Trez encourages families to tell their stories, too. She believes this will help break down the stigma often associated with mental illness. And it lets others who are struggling know that they’re not alone.
Resources for people and families struggling with mental illness include Washington Recovery Help Line, National Alliance on Mental Illness Eastside, and the Substance Abuse And Mental Health Services Administration.