Thursday, June 26, 2014

Fighting for the Mentally Ill

Charlotte Canelli is the library director of the Morrill Memorial Library in Norwood, Massachusetts.  Read Charlotte's columns in the Norwood Transcript and Bulletin.

In the 80s, when we lived in a small Central Massachusetts town, my eldest daughter had a particular admirer named Micah. Micah was a precocious and very handsome six-year old classmate. His mom, Paula, asked me to arrange a playdate for the two first-graders and shortly after, we mothers became fast friends.

We found that our younger girls (kindergartners) also enjoyed each other and we began to trade time. I watched the four children so that Paula could attend classes at a local college to complete her undergraduate degree. She, in turn, managed the crew while I attended meetings as a volunteer on community boards and organizations. 

A few years later, Paula and her family (and an additional infant son) moved to another area of the state. The families exchanged holiday letters each year and admired photos of the exceptional children who were growing up so fast.

Several decades later, Paula and I found ourselves single women, our children college-aged were starting their adult lives. While I boasted of my daughters’ many achievements, Paula shared the story of her own children – her two youngest in college, starting lives armed with good health and exceptional educational achievement. 

Her story of Micah, however, was one that broke my heart.

Micah had been diagnosed with schizophrenia. The signs of difficulty began during the summer after his high school graduation. Soon after he started college, he experienced what is termed a psychotic break. In the years that followed, and many heartbreaking episodes later, the painful diagnosis was confirmed.

There is no appreciable higher rate of schizophrenia in men or in women – it strikes both sexes equally. However, the onset of schizophrenia in boys and men seems to begin sometime in high school and before the age of 25. For women, it begins more likely between the ages of 25 and 30. First diagnosis of the disease is very rare over the age of 40 or under the age of 10. More people are diagnosed with schizophrenia each year than those who are diagnosed with Alzheimer’s and the percentage of sufferers worldwide is somewhere between ½ and 1 percent of the population.

While treatment for schizophrenia has varied over the years, success has eluded many families who hope only for relief for those afflicted. In the last half century medical professionals have found success with new medications; yet, for most the heartbreak has not been lessened. There are several reasons. One is that mental healthcare in the United States has become more difficult to access due to the fact that many of the mentally ill have no hospitals or clinics in which to find help. This particular population was de-institutionalized beginning in the 1960s, through the 80s, and psychiatric hospital beds become less and less available every year. It is no secret that many of our mentally ill are either homeless or in our prison systems. The number of those beset with schizophrenia is inordinately high in either case.

Another significant reason is that HIPA privacy laws provide all of our citizens, sick or healthy, with confidentiality and personal autonomy. The result is that families cannot make decisions for any ill family member unless he or she is a threat to him/herself or to others. Threat can rarely be proved, as evidenced by the recent heartbreak of families who have tried endlessly to get help for their family members who go on to inflict harm in tragedy – in the Sandy Hooks and Isla Vistas around our country. Compounding the difficulty in treating the disease is the fact that most schizophrenics cannot recognize their sickness and continually stop taking the medications that make all the difference in their well-being.

Many of us have read the infamous books written about this terrible disease of mental illness – “I Never Promised You a Rose Garden” by Hannah Green (Joanne Greenberg), “A Beautiful Mind” by Sylvia Nasar, and “An Unquiet Mind” by Kay Redfield Jamison, are but a few. Other memoirs of mental illness have equally captured our minds and hearts: “Girl Interrupted” by Susanna Kaysen, “The Bell Jar” by Sylvia Plath, and the short-story by Charlotte Perkins Gilman, “The Yellow Wallpaper." There are more and more memoirs of schizophrenia published every year as the disease intrigues us and treatments elude those who with the illness.

I, too, have seen schizophrenia up-close and personal. My father, aged 20 and with two young children and a wife, was diagnosed as a schizophrenic in the late 1950s. His rest of his life was spent in and out of state institutions and schizophrenia robbed the world, and a family, of a handsome, bright and talented man. It was frightening to me for the many reasons that all families of schizophrenia suffer – no lasting cure, too much sadness, and painful overwhelming evidence that schizophrenia can run in families.

I recently met my friend Paula for dinner and she chronicled Micah’s disease in further detail.  Paula has written letters to everyone who has influence.  She speaks out for the parents and families of those with mental illness.

Paula recently recommended that I read a newly-published book, “Shot in the Head” (2014) by Katherine Flannery Dering. Ms. Dering has written a heartbreaking and honest account of her family’s struggles to help, stand by, and love their brother Paul.  As one of the youngest of a large family of ten children, Paul’s schizophrenia came during his critical year as a senior in high school. He was never the same again.  He spent most of his life living with his parents and entering and exiting in group homes and institutions. While he died of lung cancer in mid-life, the scars and wounds of his frightening behavior and mental illness left behind for his family were profound.

I was incredibly moved by this story – by the all-too-familiar accounts of schizophrenic behavior. This book and others have a similar theme – frustration with the American mental health care system that at its best confuses and frustrates patients and families, and at its worst betrays and belittles them. The title of the book is in itself frightening and confusing until one knows that ‘shot in the head’ is Paul’s excuse for his affliction.  He understood that his behavior was more acceptable if he convinced someone that he suffered something as devastating as a brain injury inflicted by a weapon.  Sadly, and unbelievably, that answer received far more compassion and empathy than the explanation of schizophrenia.

“January First” (2012) by Michael Schofield is a memoir written by a father about his young daughter, January.  Janni (or Jani as she preferred later) Schofield was not even 6 years old when she was diagnosed with schizophrenia – a very rare occurrence for someone so young.  It, too, is a frustrating account of parents who desperately try to get help for a child who, at times, cannot coexist with them and her baby brother in their home. The story, however, ends on a hopeful note and their website chronicles January’s achievements living a somewhat normal life.  Her parents have worked tirelessly to find professionals who have helped them and January regularly meets with other children (most of them older than her).  Their foundation, the Jani Foundation, seeks treatment for this terrible disease.

“The Center Cannot Hold” (2007) by Elyn R. Saks is another sad and painful, yet astonishing and inspiring, story.  Elyn appears in an amazing TED talk that can be seen online simply by Googling her name.  While she recollected troubling moments as a young child that seemed to strain the tether to her reality, Elyn had her first psychotic break in college and was delivered a diagnosis of schizophrenia in her 20s.  Amazingly, she fought her terribly horrifying disease while graduating from Vanderbilt University and her master of letters from Oxford University in England. She went on to earn her J.D. from Yale Law School and a Ph.D. in psychoanalytic science. She is a professor of law and psychology at the University of Southern California. She received a MacArthur genius grant of half a million dollars to establish an Institute for Mental Health Law, Policy, and Ethics at USC and is working tirelessly to create safe environments and fair policies for the treatment of mental illness, including schizophrenia.

Many other memoirs of mental illness have been written. Mark Vonnegut, son of Kurt Vonnegut, has written the story of growing up with his father and his recovery from schizophrenia and bipolar disease.  Mark Vonnegut is a Massachusetts pediatrician and the author of both “Eden Express” (1975) and “Just Like Someone Without Mental Illness Only More So” (2010). 

“Mad House” is written by Cambridge, Massachusetts resident, Clea Simon. While Ms. Simon writes mysteries today, her first book was a chronicle of growing up with two schizophrenic siblings, Daniel and Katherine. Theirs, too, are stories of bounces from institution to institution, refusals of treatment, and the disruption that the illness caused the Simon family.

In “Mad in America," author Robert Whitaker writes “More than 2 million Americans suffer from schizophrenia and their difficult lives bring unimaginable heartache to their families. Too many end up in prisons, homeless, or shuttling in and out of psychiatric hospitals. Why should living in a country with rich resources and with advanced medical treatments for disorders of every kind, be so toxic to those so severely mentally ill?”

My lovely friend Paula continues to fight for Micah and indirectly for all of our family members who suffer from this debilitating and still baffling disease. Those of us who read their stories and struggles can only become more compassionate and empathetic to those who suffer and their loved ones who care so deeply. (Note: Paula and Micah are pseudonyms.)