Mental illness in Vermont
Mental illness has struck like a viper at my family in the past decade. After 20 years of happy, optimistic family life in Vermont, we found ourselves abruptly snatched out of the sunlit world and shoved into the dark gulag of schizophrenia.
Our younger son, an untroubled boy and gifted musician, was stricken at 18; after three years of struggle, he took his life in our home, a week before his 21st birthday.
His older brother, strong and vital, joined “the spectrum” several years later, well past the typical age of onset, which is mid- to late-adolescence. His case is milder, his life-force powerful, and my wife and I believe that with care and consistent medication, he will fight his way back to a productive life. Our own lives are consecrated to this outcome.
The point here is not self-pity. The point is to pay witness to the extraordinary dialogue that spooled out over two hours in Room 11 of the State House at Montpelier in the early evening of Jan. 30.
And to urge more such dialogues and enlightened media coverage of such dialogues. And to urge Vermonters who, like us 10 years ago, live under the illusion that this disease is a problem that affects someone else — a tiny percentage of someones else.
To paraphrase Tolstoy on the subject of war: You may not be interested in schizophrenia. But schizophrenia is interested in you.
Schizophrenic disorder is hardly as rare as many would like to believe: Nearly 8 million Americans are afflicted, or 3.3 percent of the population. Vermont’s percentage is higher: 25,000 of our 626,000 people receive public care each year, or a little over 4 percent. This doesn’t count those who, in the words of one human services director, have “fallen off the map.”
Public policy, shackled by public indifference and straitened budgets, fails to meet humane levels of hospital beds and funding for care. The National Alliance on Mental Illness reports that two-thirds of our states have cut their funding for mental health care in recent years, a total loss of $1.8 billion. Vermont’s Legislature, while not nearly so draconian, still struggles to spread its $200 million mental health care budget across burgeoning pleas for more beds, more staff, more outreach.
Our judicial system, while improving, continues to lump mentally ill lawbreakers with “ordinary” felons, depriving them of vital medication and worsening their psychoses. Government funding for treatment, beds, facilities and anti-psychotic medication remains shockingly inadequate.
The event in Room 11 was a public hearing convened by the Senate Committee on Health and Welfare, and chaired by Sen. Claire Ayer (D-Addison). At issue was a bill, backed by Gov. Peter Shumlin, that would lessen the time-interval that now delays emergency medication, often for a month or more, to patients in psychotic states whose disordered brains may be at risk of further tissue deterioration unless the disease is promptly held in check. Some, yet far from all of these sufferers refuse to give consent to a dosage. Their interlude typically extends far longer, as court orders plod through the system. (Our surviving son waited 52 days for meds after being taken to Rutland Regional Medical Center last fall.)
A reader who is (mercifully) unfamiliar with the labyrinthine neuroscience of mental illness and the equally complex array of passionate disagreement as to its treatment might read the above paragraph and shrug: “So what’s the problem? Give ’em the dang meds.”
Uh-uh. We are treading the surface of a deep, dark pool. The Jan. 30 hearing was in fact just the latest re-enactment of a long and tortuous struggle in Vermont: the struggle to reconcile two fundamental yet perhaps mutually exclusive principles regarding mental health.
One principle — medication and hospitalization regardless of consent — derives from the Hippocratic Oath, which enjoins doctors to “prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone.” (This is popularly, and a little reductively, known as “forced medication.”) Most of us remember only a compressed version of the Oath: “First, do no harm.” Yet it is the phrase “prescribe regimens for the good of my patients according to my ability and my judgment” that demands our deepest attention here.
The competing principle, ironically, is embraced by both conservatives and liberals in independent-thinking Vermont. It requires honoring a patient’s constitutional liberties. These liberties include — it is argued — the right to refuse medication, regardless of her capacity to reason. Thus, forced medication violates a human being’s fundamental sovereignty over her body and soul. Perhaps this stance derives in part from our collective memories of evil experimentation on human beings practiced in totalitarian regimes of the 20th century.
For the record, my wife and I both testified in favor of trained caregivers being permitted to administer meds, as quickly as possible, regardless of consent when the patient is in a crisis. In our experience, this procedure has arrested a dangerous trajectory and produced no debilitating side-effects. It has become a cornerstone of our hope for our son. And we wonder, like many others, how a person in the throes of unreason can possibly make a rational decision in his own self-interest.
Before the hearings in Room 11, I might have dismissed the “don’t-interfere” side’s arguments as illogical, even beside the point. (Virtually all non-consenting patients will be medicated eventually through the time-consuming court order petitioned by the caregivers. So isn’t it cruel to keep the sufferer imprisoned in her psychosis for a minute longer than necessary?)
I still hold to this position. Yet I was changed nonetheless by hearing the agonized, heartfelt testimonies from those who oppose psychiatric intervention.
Those Vermonters, for the most part, were not rigid ideologues. Many were themselves schizophrenia sufferers. These were good and earnest people who had suffered almost unbearable disruptions in their lives. If they evinced a deep suspicion about psychiatrists’ motives or competence, or if they believed that the anti-psychotic “cure” was worse than the disease, then they had come by their beliefs the hard way.
As I sat listening, it struck me that what unified all of us in Room 11 was far more profound than what divided us. Every one of us had been scarred in some way. Every one of us was wrestling, to the best of our abilities, with a demonic affliction whose causes remain largely unknown to science and medicine in the 21st century; whose optimal treatment differs from patient to patient (schizophrenia and its allied diseases are nothing if not shape-shifters) and whose effects, especially at the extreme, are all but unspeakable.
And it struck me that the path forward to control and perhaps, at some future time, conquer schizophrenia will not be achieved by the tactics that now define our sadly polarized nation: contention, controversy, the call to our least worthy instincts. The conquest will depend upon compassion, and civic commitment, and common cause.
Schizophrenia is interested in us. And now, finally, dammit, we all may be getting interested in schizophrenia.
Ron Powers is a Pulitzer Prize-winning journalist and author who lives in Castleton.