Sylvia Charters is one of the mom/authors in Tomorrow Was Yesterday - Explosive First-Person Indictments of the US Mental Health System - Mothers Across the Nation Tell It Like It Is. Sylvia passed away from COVID this past weekend. She and her husband Bill celebrated their 49th wedding anniversary in July. Bill is in the hospital with Covid and hopes to return home soon.
Sylvia was the mother of two sons. Her son Jason had bipolar disorder with psychosis. He passed away in 2020 at age 40 with cardiomyopathy. Her youngest son is undiagnosed and living, homeless, on the streets of Phoenix and is addicted to street drugs. He has symptoms of bipolar disorder.
I’m reposting Sylvia’s story, from the book, in her honor. She was a fierce Mama Warrior and medical brain disorder advocate. My love and condolences to her family and friends. My best wishes to Bill for his full recovery.
THERE’S NO HELP IN THE USA
by Sylvia Charters
I will never forget the night I woke up at midnight to find my 33-year-old son crawling on the floor. As I walked toward him, he yelled, “Get down! They have guns. We’re surrounded.”
I realized something was very wrong with my son. I got down beside him, speaking gently. I asked him, “Who has guns?”
He said, “The FBI. The CIA.”
There was no one but the two of us. He continued, “We’re surrounded and in danger. They can hear through the walls.”
I told him, “Stay here. I’m going for Dad.”
I crawled down the hallway into my bedroom, woke my husband and told him, “Something is terribly wrong with Jason. Call 911. I think our son’s had a mental breakdown.”
The sheriff and ambulance arrived and pretty much confirmed what I had said to my husband. That night our lives changed forever. My son was admitted to the hospital and we were told he would be transferred to the Phoenix County Psychiatric Hospital where he would be treated and evaluated for severe mental illness.
Our hearts and minds were numb, crushed. We, as a family, became broken—just like our son. Our dreams and hopes were shattered. We didn’t know this was the beginning of a horrific journey that we, as a family, would travel alone with no road map.
My son was diagnosed with Bipolar 1 (psychosis). He was hospitalized for 30 days (his longest stay). Thus began numerous hospitalizations. We watched over him 24/7. He was so different. We’d lost the son we raised and learned that he’d never be the happy-go-lucky, funny, social, person we knew. The meds kept him disoriented, sleepy, and lifeless.
We began to read, research, and ask a lot of questions. We enrolled in NAMI’s Family-to-Family 12-week class. Slowly we learned the devastating truth. No one had answers. We lived one day at a time. The revolving door, cycle after cycle, merry-go-round circus began—treatment, hospitalization, overdose, under-dose, multiple meds, horrific episodes of anger, violence, running away, arrests, jail, court-ordered treatment, probation, involuntarily and voluntary hospitalizations, suicidal episodes, nine petitions. “Gravely disabled.” “Seriously mentally ill.” Words that held stigma, shame, and loss, brought devastation.
It became clear our son needed 24/7 care. We pleaded, searched, fought, and finally obtained transitional housing—only after Jason ran away, stopped his meds, became psychotic, and a danger to himself and others. Multiple times he was on court-ordered treatment.
I wrote letters to the governor, to President Obama, to his clinic, psychiatrists, and caseworkers, holding them accountable for my son and our family if tragedy occurred due to lack of help. Shortly thereafter, my son was placed in transitional housing with 16-hour onsite staff responsible for ensuring that meds were taken. I visited Jason daily, made him breakfast, watched him take his meds, drove him to every doctor appointment, trusting no one (health professionals, case mangers, had all let us down).
I took early retirement and became my son’s caregiver. My son started to improve. The daily routine began to work. He didn’t think he was sick (anosognosia) but he began to trust us. It took three years. Jason developed diabetes, high blood pressure, and gained a lot of weight, but he continued to obey us and believed us when we told him, “We will keep you safe and off the streets. However, you must continue taking your meds.”
We were making progress. Then I had to file a restraining order. Jason had pushed me out of the car and threatened me. I knew, in his psychotic state, he could kill me. After homelessness, more hospitalizations, arrests, and court-ordered treatment, the cycle took a turn for the better.
With treatment, the right meds and constant family involvement in his care, we saw improvement. We wanted Jason to live independently, however we knew he wouldn’t be able to take his meds without supervision. And without his meds, he’d become psychotic and dangerous, not by his nature, but because of his illness. We learned to separate the ugliness of his illness from the son we knew and loved. We made the decision to bring him home—again. We knew that no one could love or care for him better than his family. Our family bonded together, demonstrating to him that we would not desert him. Tough love doesn’t work on a broken mind.
At age 67, our retirement dreams were no longer our priority. Our son was our priority. We moved from Arizona to Florida because Jason’s always loved the beach. We left the care and support we had behind. Now, we pray that Florida will help our son but, truth be told, there’s no help in the USA, especially not in Florida (retirement state).
Sylvia and Bill Charters