Randye Kaye - Ben Behind His Voices: One Familys Journey from the Chaos of Schizophrenia to Hope

To help me help myself up a mountain...

Schizophrenia is an illness that has devastated the lives of countless individuals and families. For decades, people have suffered in silence due to stigma, shame, and lack of knowledge about the biological basis of the illness. Indeed, organized psychiatry played a major role in fostering stigma with its early theories regarding family and parenting styles as potential causes of psychotic states. Too many affected individuals have suffered silently, and families have been torn apart by the disease.

Over the past ten years, however, research has generated new and important information about schizophrenia, and more effective treatments have emerged. Most importantly, families are recognized as the most important support persons in an individuals treatment and recovery. Stigma is beginning to wane, and patients, families, and behavioral health clinicians are together mounting a fight against the illness.

Randye Kayes book provides a vivid description of the highs and lows experienced by families of individuals with schizophrenia. Like other published works, this book details the chaos of the early stages of the disease, the difficulties of recognizing the illness, and uncertainties regarding treatment options.

Ms. Kayes story is different, however, with its vivid description of her family members efforts to maintain a thread of hope throughout a torturous several-year process, and to face the difficulties and tragedy of the illness head-on. The reader is heartened to see each family member, including Ben, find a level of courage that none felt they possessed.

Thomas Smith, MD

Medical Director, New York City Mental Health Care Monitoring Initiative, New York State Office of Mental Health

Associate Professor of Clinical Psychiatry, Columbia University College of Physicians and Surgeons, New York State Psychiatric Institute

This is a true story.

Other than my full name and the first name of my daughter, Ali, all of the names of people, hospitals, schools, and other institutions included in this book have been changed. Some identifying characteristics have also been alteredand please note that neither of my children shares my last name.

This memoir is an accurate recollection of events as re-created from recorded conversations, hospital records, correspondence with Bens providers, my journals, and my own memory. This book is not intended as a manual or complete guide to handling schizophrenia; however, some facts and resources are provided to help the reader understand the progression of the illness as it unfolds in the story, and to guide the reader toward books and organizations that can provide support, education, and help.

Our story is not unique. One out of every four families in the United States has been affected by mental illness. Schizophrenia affects one in every one hundred people, worldwide.

My son, Ben, knows the lyrics to every song Ive never really noticed on the radio. Hes the one who teaches me to appreciate the poetry in songs by Led Zeppelin, Pink Floyd, and the Grateful Dead. Hes my favorite companion for performances of Shakespeare in the Park, because just at the point when Im starting to think why dont they just speak English already? he invariably whispers something like, Wasnt Shakespeare a genius, Mom? Listen to the music in the way he wrote those lines. Shame on me.

In October 2010, he proudly served as groomsman and toasted his sister, Ali, and her new husband, Marc, as they celebrated their wedding day. He ad-libbed an unscheduled speech that was concise, funny, and full of both nostalgia for the past and hope for the new couples future. Like Ben, it was loving and sweet.

Hes a really nice guy. If you accidentally give him too much change at the cash register, hell point out the error and give it back to you without hesitationeven if he has to walk a mile back to the store to do it. His face lights up whenever he gives someone a presentespecially Ali, whom he has always loved deeply. Ben proudly shows his anniversary tokens from Narcotics Anonymousmarking his years clean and sober. He ends every phone call to me with Love you, Mom. He gives great hugs. He always remembers my birthday.

Ben loves nature, children, fantasy video games, helping others, the Indianapolis Colts, Thanksgiving with the family, and vegetarian Thai food. He has made the deans list at college three semesters in a row. He kills at Scrabble. He has offered to counsel my best friends nephew, who is still lost in the world of drug addiction.

Ben is twenty-eight years old. Andoh, yeshe has paranoid schizophrenia.

Ben is not supposed to care about othersthats one of the symptoms of schizophrenia. But he does. He is full of love, and were grateful for his presence. Our family has learned to live in the moment; there are, thankfully, many moments to treasure these days. But it wasnt always like this, and we know all too well that tomorrow could bring more change. Still, we have found hope and love that we once thought might be lost forever.

When Ben was hospitalized five times in 2003the height of his crisis periodfor symptoms of this illness, no one in my life really knew how to react. No one showed up with casseroles at our doorespecially not by the third or fourth hospitalization. People dont really know what to do, how to support the patient and the family. Unlike a physical illness like a broken leg, theres no timetable for recovery from something like schizophrenia. Theres no sure moment of getting better. There is no cure; there is only management. As is also true with cancer, theres always a chance for recurrence after remission. But unlike most cancers, the patients very soul seems to be affected by mental illness. The organ it affects is the brain, and thats the window to our personality, perhaps to our soul. People are frightened of mental illness; theyre uncomfortable visiting someone on the psych floor. The family feels isolated, stigmatized, and often very alone. But there is hope. Ben is in recovery. He is not cured, but he can be kept in careful balance. He is part of our family. He is worth knowing. He deserves to be understood and accepted, the same as anyone else with a disability.