REMEMBERING ROSE KING by Dede Ranahan

Last night I lost a friend. A friend I never thought I'd lose. Someone as full of passion and fight and purpose is never supposed to leave. Teresa Pasquini called me this afternoon to let me know that Rose King passed away while undergoing emergency surgery. This is not supposed to happen. By my best estimate, Rose was around 82. The last time I saw her was January 16, 2014. We met for lunch and I wrote about our meeting in Sooner Than Tomorrow.

Rose was a giant (too small a word) in California mental health politics. She co-authored the 2004 Proposition 63 Act to fund mental health services for the seriously mentally ill. Or so she thought. Disappointed in its implementation, she turned around to become one of its fiercest critics saying that it needed more oversight, that it was losing focus, and it was being diluted from its original purpose. This was not kosher. Political interests began to take umbrage at Rose and her challenging the system. Again.

Rose lost her husband when she was a young mother of three children. He killed himself in their home. Later her son would take his life at approximately the same age that his father had taken his. In her 70s, Rose supported two grandsons stricken with the family illness. Then a grandson, well and thriving, died by electric shock while working on a construction job.

How much can one person take?

From Sooner Than Tomorrow:

January 16, 2014: Rose.

My friend Rose and I are meeting for lunch. She's 75 and such a trooper. She's still fighting the exhaustive fight for a competent mental health system. She's one of three co-authors of California's Prop 63, the Mental Health Services Act.

Disappointed in its implementation, Rose lobbied for an audit by the California State Auditor. The auditor reported that it wasn't possible to determine whether Prop 63 programs had been of benefit to those served, had improved community mental health delivery, or whether programs had complied with the requirements of the law.

In addition to the appalling number of untreated mentally ill, Rose, based on her continuing research, believes eighty percent of those in the system are not receiving adequate care. "Parity, she says, "we still don't have parity for physical and mental health."

Rose's husband and son always come up in our conversations. They both ended their struggle with mental illness by suicide. Two grandsons -- one is living with her -- also deal with the illness. We agree. If all the parents and grandparents housing their mentally ill children and grandchildren were to dump them on the street, there'd be major socio-economic fallout. Our health and welfare programs would be more overwhelmed than then already are. These family members, who've given up on the mental health system, are a hidden, unappreciated population.

We change the subject. We talk about Rose's 75th birthday party. We talk about my mother, my children, and grandchildren. We try to talk about everyday things like average folks. We hug goodbye and remind each other, "Take care of yourself."

Goodbye dear Rose. Take care of yourself, finally, and rest in peace. I love you, forever. Dede.

LETTER TO SENATOR WYDEN AND THE SENATE COMMITTEE ON FINANCE by Dede Ranahan

November 1, 2021

Dear Senator Ron Wyden, and other members of the Committee on Finance:

This is in response to your request for input from stakeholders to help you better understand how Congress can address behavioral health care challenges.

First, thank you, Senator Wyden, for keeping at it. I’m sure you don’t remember, but back in the late 1990s you intervened for my son who was delusional and psychotic in Oregon. He died in a California hospital psych ward in 2014. He never did receive the help he needed for schizo-affective disorder. In the interim, I became a mother bear and mental illness activist. I’ve written two award-winning books, Sooner Than Tomorrow — A Mother’s Diary About Mental Illness, Family, and Everyday Life (Nautilus Book Awards Gold Medal Winner, Memoir, 2019) and Tomorrow Was Yesterday, Explosive First-Person Indictments of the US Mental Health System — Mothers Across the Nation Tell It Like It Is (Nautilus Book Awards Silver Medal Winner, Social Change, Social Justice 2020). The second book includes stories from 65 mothers from 28 states, and a fifteen-point plan to address serious mental illness (SMI - schizophrenia, schizo-affective disorder, bipolar disorder, clinical depression, etc.). The plan was developed in 2019 by advocates/activists from across the country.

In January 2021, 150 Tomorrow Was Yesterday readers, from every state in the nation, volunteered to send a copy of the book to the White House (Joe Biden, Jill Biden, Kamala Harris, Xavier Becerra, and individual legislators) thinking 150 copies of the same book from every state might get someone’s attention. Five months later, we all began receiving form letters from the White House thanking us for our “gifts” and for welcoming Joe Biden to the Presidency. No mention of the topic. No reference to the books. It was hurtful and insulting.

The 15-part plan was prioritized by the participants. The number 1 priority on their list is to "Reclassify Serious Mental Illness (SMI) from a Behavioral Condition to what it is, a Neurological Medical Condition." Until we look at SMI through a biological/physical lens, the significant changes we users of the system need will not happen.

I’m not trying to specifically address the questions you’ve posed in your letter. The SMI Plan cuts through all of them. More significantly, it raises issues not included in your list. The suffering in the SMI community (11-13 million diagnosed individuals plus their families) is intense. We’re screaming to the heavens for help. So far, no one seems to be listening.

Summary from Tomorrow Was Yesterday:
“As it stands today, the US mental health/illness system is filled with political landmines and gut-wrenching divisions: parents vs. children, peer organizations vs. family organizations, voluntary vs. involuntary treatment concepts, psychiatrist vs. psychologist turf wars, state vs. federal jurisdictions, HIPAA restrictions vs. parental rights, lack of beds vs. incarceration, unions vs. providers, psychiatry vs. anti-psychiatry, civil rights vs. dying with your rights on, NIMBYism vs. housing, traditional medicine vs. holistic medicine, and funded advocacy organization vs. unfunded grassroots advocacy efforts. I watched my son Pat die because the system is tied up in bureaucratic and philosophical knots.”

I would be happy to send you a copy of Tomorrow Was Yesterday which includes the 15-point plan to address SMI. My hope is that you, and others on the committee, might read our stories, take the plan seriously, and pursue some of its recommendations. It’s a beginning. It’s from the people in the trenches -- the sufferers, the families, the folks the system is supposed to help.

Thank you for reaching out. Let me know if/where I should send a copy of Tomorrow Was Yesterday.

Sincerely,
Dede Ranahan

Available on Amazon

IN MEMORY OF SYLVIA CHARTERS by Dede Ranahan

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