|« The Wisdom of Solomon||Right Man for the Job? »|
No one at the public radio station warned Phoebe Hoss not to read the f-word. She?s 84, after all, with white hair and lovely manners. Perhaps the interviewer thought it unnecessary. Never mind, she read it anyway, although you didn?t hear it if you were listening, thanks to some sound engineer.
Flying from the lips of her then 9 year-old son as he looks for a weapon to attack his friends, the f-word appears repeatedly in the opening of her book, All Eyes:A Mother?s Struggle to Save Her Schizophrenic Son.
It?s not a happy story, as the title hints, but it?s a very instructive one, and it should be balm to any family who has scrambled to find treatment for mental illness. Hoss (a friend of mine) has been out promoting her book published by Carolina Wren Press.
She manages to infuse a highly personal story with her growing awareness of the short-comings of our mental health ?system.?, All Eyes is beautifully told and finding its audience particularly among families struggling to help loved ones as Hoss did until her son, Bard, killed himself at the age of 26 in 1988.
Medications have improved since then, of course, but like so many patients, Bard Hoss had walked away from medication. That he did so with the support of another branch of the medical profession, the one that treats substance abuse, says a lot about our lack of a systemic approach to disease. His mother had urged the physician who was convinced that alcohol addiction was at the root of Bard?s problems to speak with the psychiatrist who had diagnosed him as an adult, but there?s no evidence that he did.
Hoss, who, after retiring as a scholarly book editor, turned to the journal she kept through her family?s ordeal, says that her memory of the isolation that mental illness brought to her family was what propelled her to write about her experience. Many people didn?t want to hear about her difficulties. Others listened, but insisted everything would turn out fine. And the mental health professionals from her local agency simply gave orders, without explanation, for her son?s early care.
Eventually, she found help in a psychiatric social worker who broke through the awful bureaucratic morass in which Bard had become enmeshed and helped her overcome her own passivity . After Bard?s death, she found community in a Unitarian Universalist congregation where she serves as a lay pastoral associate today.
Another octogenarian, former First Lady Rosalynn Carter, has a new book about mental illness, too. She doesn?t use the f-word, but if she were the cussing type, she?d have plenty of cause. In her new book, Within Our Reach: Ending the Mental Health Crisis, Carter relates how she first became acquainted with the suffering of families coping with mental illness in 1966 when her husband, Jimmy, ran for governor and Georgia?s Central State Hospital at Milledgeville was in dire need for reform.
She began then to communicate with these families and to press Georgia?s government for action. She broadened her concerns to a national stage when her husband became president. She succeeded in working with Senator Ted Kennedy (ironically, her husband?s opponent in the Democratic primary) in getting national legislation passed in 1980 only to have it de-funded by Ronald Reagan after Jimmy Carter was defeated.
Not since then has anyone legislated a comprehensive reform of treatment from illnesses that range from depression to schizophrenia to bi-polar disorder to post-traumatic stress disorder, substance abuse and other ills. As Carter notes, the most unfortunate patients are no longer hospitalized in locked wards but incarcerated in prisons, often without treatment. We haven?t deinstitutionalized the problem so much as moved it to another institution.
Carter is guardedly optimistic. She reviews the latest research on brain chemistry and medications. She offers simple but concrete suggestions for helping mental patients and their families. Although the book reflects her point of view, it?s not an intimate personal narrative, and she has two co-authors Susan K. Golant and Kathryn E. Cade. What is remarkable is her fealty to a topic that was not her personal struggle, but one that touched her heart and to which she has remained stalwart over more than four decades.
My quarrel with Carter?s title is that I don?t believe most Americans regard this as a crisis. Unless they themselves have sought help for a family member?s severe mental illness, most people care little or not at all about the fragmented approach our society takes to its treatment. We increase or decrease insurance coverage. We dispense new drugs, some of which turn out to be harmful or misused or rejected by patients. We turn to mental health professionals, some of whom are not licensed in any meaningful way and certainly not organized into any circle of effective care. And, when all else fails and patients act upon their irrational impulses, we send them to jail.
The White House has its hands full these days, and not even the occasional massive killing by a person with severe mental health issues can capture the sustained attention of Congress.
Perhaps the best hope is with grassroots organizations like the National Alliance on Mental Illness (NAMI) which presses for reform state by state and addresses issues of common concern. As Hoss and Carter testify, there is pain and heartbreak aplenty when the mind goes awry, and ignoring the problem doesn?t make it go away.
It?s going to take a lot more impatience and strong language to break through the complacency that surrounds this issue, and these two women and their books should help fuel it.