Personally Speaking: A mother’s story of surviving schizophrenia
By Deborah Geesling
My husband Matthew and I have four adult sons. Our third son has battled schizoaffective disorder for the past 12 years. He has all of the symptoms of schizophrenia and bipolar disorder. For almost a decade, he lacked insight into the extent of his illness, a condition called anosognosia.
Our son needed the compassionate use of assisted outpatient treatment (AOT), thankfully available in our state and county. He did not understand that he was ill and therefore would not take his medications without this tool. When he had his first psychotic break at the age of 18, he went through a mental health court process that determined he should comply with treatment to remain in the community for one year. If he failed to take his medications, he could be placed back into the hospital. Our son was given legal representation and had the right to appeal this order every 60 days.
He was released from the hospital after he was placed on AOT to our home and was assigned to a clinic with an ACT Team for individuals with higher needs. This support was crucial to our family as our son was still symptomatic and we were learning how to care for him. However, after the court order ended, our son stopped taking his medications. Things went from bad to worse. He quickly decompensated and he had to be hospitalized once again and was eventually placed back on AOT.
The following year proved very difficult as he tried new medications. He was not stable and was stuck on a dangerous roller coaster ride.
During our son’s 14th psychiatric hospitalization, a social worker shouted at me from across the table, “This is as good as it’s going to get, your son will always hate you!” I had grown accustomed to these sorts of meetings where the hospital aggressively moved to release our son too early, and we pushed back believing he wasn’t ready. We always lost the battle, and this time was no exception. However, I was starting to believe that the social worker might be right.
What if he never gets better? What if he continues to decompensate further into psychosis and loses more cognition? I felt terrified and helpless.
Around the same time, a new psychiatrist wanted to try different medications. Our son began to respond well to this adjustment. But because he still did not believe he had a mental illness and said that he would stop taking medications once his yearlong court order expired, his psychiatrist, I, and his ACT Team would continue to request renewal in court.
Eventually he would need to be on AOT for eight years in a row, something unheard of in most states. Because our son did not want to go back into the hospital, he took his medications. He also did not object to the last four years of the assisted outpatient treatment renewal because he began to see the benefits. He was no longer going in and out of the revolving door of hospitalizations and he was starting to feel better.
As mothers do, I would worry about the long-term effects of medications on my son. But my son would continue to surprise me. Three years ago, he began a part time job at a wood-fire pizza restaurant. He continues to work there faithfully and rarely misses a day of work.
When COVID lockdowns began I was concerned that my son would lose ground. The restaurant closed temporarily and he and the men at his group home had nothing to do all day, their days and nights were mixed up. We went from our weekly routine of shopping, having lunch together, going to church, and spending time with family, to zero visits, random face-time calls, and Instacart grocery deliveries.
Not only did he lose precious time with our family, but before the pandemic, he had been meeting with his pastor who is a biblical counselor. They met weekly for several years. My son’s faith is important to him, and the lockdowns brought a significant halt to this support in his life. Would he lose ground I wondered? What would be the effects on his cognition?
There is nothing I enjoy better than my son proving my fears wrong. As the COVID restrictions began to lift, he returned to work slowly. We slid back into our routines and scheduled his counseling again after more than a year. When his first session ended, my son’s counselor took me aside to say what a noticeable improvement he saw in my son’s cognition! I was stunned. Improvement? Yes. He told me that he wouldn’t have imagined that my son could go through a book with him a year ago and he went on to suggest they begin reading a book together called, “Gentle and Lowly, The Heart of Christ for Sinners and Sufferers,” by Dane Ortlund.
Since that time, I have seen noticeable improvement in my son’s cognition. He continues to struggle with symptoms of his illness, but he is gaining insight. For the past eight years, he has been consistently taking medications and has remained in the community with no further hospitalizations. Assisted outpatient treatment gave him the platform and structure to begin to heal.
So many people in our country don’t have that opportunity. So many people aren’t offered this kind of chance of a life filled with hope and dignity. They are forced to accept the lie that “this is as good as it’s going to get” because the necessary tools are not available to them. But I know it’s possible, I’ve seen it. My son has proved it over and over, despite setbacks and a system that’s not friendly toward those with severe mental illnesses. He beat the odds and showed me and everyone else that it can be done.
Assisted outpatient treatment is the right thing to do if needed, even if it doesn’t feel right at the time and you think your loved one may hate you. He or she may certainly hate you in that moment you sit in that courtroom and testify, but maybe they’ll just prove all your fears wrong someday, prove everyone wrong.
Deborah Geesling is an advocate for individuals and families living with serious mental illness in Arizona where she works with state leaders to enhance the system of care.
