Our Story

When mental illness wreaks havoc on life and home.

In September 1989, my beautiful, talented daughter entered NYU Film School as a promising young filmmaker. She amassed a stunning photography portfolio and produced two acclaimed short documentaries while still in high school, and every university she applied to offered her scholarships. In her freshman year, she produced several excellent and insightful short films, but when she returned for her sophomore year, she had a mental breakdown and had to return home on a medical emergency basis. She has never fully recovered.

For the past 30 years, she has struggled with mental illness, which is much more difficult to diagnose and treat than a purely physical condition such as diabetes or heart disease, especially when the subject is highly intelligent. While the age at which she became ill is a common time for the emergence of schizophrenia, she has never experienced the classic visual and auditory hallucinations symptomatic of the disorder. She does, however, experience paranoia, has delusions that her father and I control her from afar and express grandiose, unrealistic ambitions. As a result, her diagnoses have vacillated from bipolar and schizo-affective to dissociative identity (once called multiple personality) and even obsessive-compulsive.

Over the intervening decades, my daughter has been hospitalized numerous times and has been prescribed psychotropic medications that invariably she has stopped taking because once they begin having the desired stabilizing effect, she doesn’t believe she needs them. When she spirals into a seriously decompensated state, her thinking and communication become disjointed, she is non-compliant with any directives, is unable to maintain personal and environmental hygiene, cannot follow through on even her simplest plans, and is consumed by rage. For these reasons and more, she has twice been diagnosed as “gravely disabled,” placed under legal conservatorship, and court-ordered for in-patient treatment at a secured psychiatric hospital.

My daughter’s first conservatorship did not go well. The hospital where she was being treated discharged her too soon and she fled California. For five years she moved from state to state, and my only contacts with her were late-night delusional phone calls – when she would rage that I was controlling her telepathically. In Washington, she was hospitalized several times, and at one treatment center seemed to be doing well, but then she stopped taking her medication again and the delusions returned. I didn’t hear from her for months, and when she finally called, I learned she was homeless in Hawaii.

When she returned home she was hospitalized again, placed in conservatorship, and court-ordered for treatment in a secured psychiatric hospital. She hated every minute of the four months she spent at the facility, but her mental state stabilized and she was discharged to an outpatient program. When her conservatorship came up for its annual renewal, the judge lifted the restriction because she no longer fit conservatorship’s narrow legal definition. By this time she wasn’t in denial about her mental illness and willingly continued taking her medication. Then she met someone who introduced her to meth.

She has been using meth for three years now. The drug has wracked her body, rotted her teeth, and destroyed all the progress she had made. For the past year and a half, I lobbied her psychiatrist, caseworker, and the mental health system to re-admit her to a psychiatric hospital, but was told by all that she didn’t “fit the criteria.” Finally, the fifth evaluation team authorized hospitalization that would begin the conservator process again. Her physical condition was so grave that she was put on IV fluids and antibiotics in a non-secured ward, equipped with a sole 24-hour guard. On the sixth day of treatment she was left briefly unguarded and she fled. The hospital filed a “critical missing person” report with the police, who tracked her to a homeless encampment, but they couldn’t enter without search warrants. A week later, she contacted me and I notified the police, thinking the information I gave them would help find her, but I was told that because she contacted me she was no longer considered “missing,” and her case was closed. She won’t come home and doesn’t trust me because I have called the psych team so many times, which she sees as a betrayal rather than my desperate attempts to help her. She prefers to live on the street.

My heart breaks when I look at my daughter’s wasted body and hear her delusions. She says the meth makes her feel better and is healing her, but I know it’s killing her. She refuses to seek help on her own, and with the way the laws are structured, I am prevented from helping her against her will.

This is our story. But it’s more than just our story. Mental illness is a scourge that affects millions of Americans. Everyone I know, or even speak casually with, either has a family member who is afflicted with mental illness or knows someone who suffers from it in some form. The numerous commercials for medications that treat psychiatric disorders demonstrate how rampant mental illness has become, but the billions in profits earned by the pharmaceutical companies that manufacture psychotropic medications strengthen their lobbies to deter Congress from changing the laws that regulate treatment. Mental illness is the primary underlying cause of our overcrowded prisons, the drug crisis, and the homeless epidemic that grows more severe every day. Undiagnosed and untreated, persons who experience mental illness will often endanger their lives by self-treating with alcohol or drugs, a mental health condition defined as “dual diagnosis.” In 2018, the California legislature was presented with a bill that would broaden the legal definition of mental illness to include drug use, but it failed.

NAMI, the National Alliance on Mental Illness, the nation’s largest mental health organization, is dedicated to building better lives for all Americans affected by mental illness. What started as a small group of families gathered around a kitchen table in 1979 has become the leading voice on mental health. Through their public awareness events and activities, NAMI fights the mental illness stigma, encourages understanding, and works daily to make sure our country understands how important mental health is.

Across the country, thousands of trained NAMI volunteers who have personal experience with mental health conditions in their own families bring a variety of peer-led programs to community locations. The NAMI Family & Friends four-hour seminar informs and supports people who have loved ones with a mental health condition. Participants learn about symptoms, diagnoses, treatment, recovery, communication strategies, crisis preparation, and NAMI resources. NAMI Family-to-Family is a free 12-week class for families, significant others, and friends of people with mental health conditions. The course is designed to facilitate a better understanding of mental health disorders, increase coping skills, and empower participants to become advocates for their family members.

If you love someone who is suffering from a mental health condition, I encourage you

to visit www.NAMI.org and learn more by

attending NAMI’s free educational programs. I did.

The writer wishes to remain anonymous.

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My sister has suffered from schizophrenia since she was 21.

This prayer/poem popped out after a particularly sad visit with her a couple of years ago. She is a very gentle soul. Although Hell exists between her ears in the form of frightening delusions, she will hone in on anyone whom she thinks is sad or suffering. It can get a little sticky, but everyone at the nursing home understands.

I have saved envelopes of single-dollar bills that she shoves at us for the family. It is so important that she has something to give. She is so generous, which blows my mind since she has suffered so much.

The writer wishes to remain anonymous.

_______________

I believe in an afterlife,

A promise made by the gentle Jesus,

Of a Heaven free of pain.

A place of joy and possibility,

Of welcome into the arms of

Those we loved.

Is there a Hell?

I doubt its reality,

When I observe your anguish.

Hell is your struggle

These seventy-six years

on Earth.

I dream and hope in the

Beliefs of our eastern brethren.

That there is another chance for you.

A rebirth into a world

Ripe with realities that

Were snatched from you

The day you were born.

I pray for a safe space

And loving arms to hold you

And sweet, dream-filled nights.

I pray for good, loyal friends

And meaningful work.

I pray for dances and beautiful clothes.

For a loving mate,

For children who adore you,

For a home that reflects you,

Where you can dance from room to room;

I pray for rooms with no bars.

For a mind

Open to the wonders of the world.

I pray for your freedom. ♦