From Chaos to Hope: A Family’s Odyssey with Schizophrenia

"Ben" Kaye - Recovering from Schizophrenia
Ben Kaye

Seared into Randye Kaye’s memory is a terrifying day in 2003 when she rushed 21-year-old Ben to the emergency room of the local hospital near her home in Connecticut and told the front desk, “My son is having a psychotic break.” Ben was led away, and as Randye waited to learn what would happen next, she glimpsed him through the window of the lock-down room, frantically pacing and muttering to himself. All she could think was, “How did we get here? How did this happen to my baby?” The following day he was admitted to a psychiatric facility.

It was not the first time Ben (not his real name) had been hospitalized—there would be five hospitalizations that year alone—nor would it be the last. The troubled behavior that had begun when the bright, friendly, poetry-writing boy dropped out of high school three years earlier, had spun out of control with drug abuse, misdiagnoses, ineffective medications and, above all, Ben’s adamant denial that there was anything wrong with him. But it was hard for Randye to think of this as simply exaggerated adolescent rebellion.

When Ben was finally diagnosed with schizophrenia and given effective medication, the slow, zigzag road to recovery could begin, for Ben and for his loving, worn-out family—Randye, stepfather Geoff, baby sister Ali and Ali’s husband, Marc. Today, Ben is back in school, at the local community college, on the dean’s list, and for the past six months has held a job as a server in a local restaurant, where he has been given supervisory responsibilities.  

"Ben loves his job and they love him,” Randye says, but she knows from painful experience that “a couple of days without his meds would spell disaster,” a disaster that had occurred time and again in the past, until Ben finally stopped “hiding, throwing up or chucking his meds in the trash.” Currently Ben is carefully supervised by family members while taking his medication, which is perhaps not ideal but more than worth the emotional discomfort. His treatment is one of the vital cornerstones of his improvement, along with love, purpose and structure.

Over the years since Ben became ill, Randye Kaye has put her considerable energy and background as an actress and TV personality into advocating for the mentally ill and their families, working with NAMI, the National Alliance on Mental Illness, supporting the Brain & Behavior Research Foundation and taking every opportunity to help erase the stigma of mental illness. She frequently speaks to the medical community as well.

“I’m in front of these people with M.D.s and Ph.D.s and M.S.W.s after their names. I tell them my letters are M.R.G, which stands for 'mother who refused to give up'.”

The ardent desire to communicate hope to families like her own led Randye Kaye to write a book about her son’s story, “Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope,” published in 2011. Brain & Behavior Research Foundation Scientific Council member John H. Krystal, M.D., a leading schizophrenia expert at Yale University, wrote that the book “movingly depicts the difficulty and the importance of recognizing, accepting and managing the symptoms of this disorder.”

Randye Kaye calls herself a “huge fan” of the Brain & Behavior Research Foundation.  She says: “Where would my son be now without research?” She believes that the best is yet to come for those struggling with mental illness and is eager to give it her all to ensure that it does.

Article comments

I've read Randye's book. Excellent read. I'd advise all families with loved ones affected by schizophrenia to read this book. Though each person and family's journey will be different, there's always something to learn from others.

Awesome book, which I have just finished reading. My son, who graduated with a degree in Business as well as earning a PharmD, is currently on SSDI due to his illness, is unemployed, engaging occasionally with the criminal justice system, and living a very isolated life. My heart breaks to witness the life his illness has shackled him with relative to the huge upside for success he had before his Bipolar Type I with psychotic features interrupted it. Medication compliance and therapy are the key along with his own MRG. I continue to believe that he will one day "buy in" 100% to the prescription for stability and once again engage in living. He has a world of contributions to make to others who may also suffer from these devastating illnesses. Thank you, Randye Kaye for your excellent portrayal of the descent into madness and the challenges that we who are there to pick up the pieces face every day.

Thanks for sharing your story. Your story provides hope and courage to all the families member out there, including me, who are also seeing their loved ones recover from schizophrenia. My Mother was diagnosed in 2009 and since then, it has been a tough ride emotionally. I can truly understand the amount of patience required to deal with this mental disease. More than the problem, it is sometimes others - the sane ones, who fail to understand this commonly occurring disease and creates social stigma. I am a donor to the Brain & Behavior Research Foundation and thankful for the work they have been doing. Though, More work and awareness needs to be raised regarding schizophrenia and other mental disorders.

Thank you for telling your story, and the commitment and love you have for your son. My wife and I were dumbfounded, heartbroken, and completely scared when our youngest son was diagnosed with schizophrenia eight years ago. I am a Christian, so my first action was to cry out to Jesus with the question "why?" Why did you let my son and millions of others get this disease? Over the last eights years the answer for me became clear. "Jim, you and others who are physically and spiritually well, are to help others who are suffering with mental illness. Teach them that I love them. And one day in heaven, they will be free from all sickness, illness, depression, and loneliness." This is what I live for now - to help my son and others, to let the know they are not alone, and that we will always love them; no matter what. Believing in Jesus will provide the strength and hope one needs to make a difference in the life of someone who suffers from mental illness. The obstacles, stigma, and poor priorities on the part of our government, present huge barriers to our struggle. But, there is hope if we work together for a cure and for recovery. God bless you.

I can appreciate

It's nice to find people who care so much. I've been skitzo since I was twelve and saw my first daemon. I wish my husband would read this book.

I'm very impress by all this extra information available .I have a 26 year male who had an accident , he went to purchase water for the employees , park his car and as he was entered the Liquor Store and 85 year old men pressed his accelerated 3 times against a brick wall , the driver was confused
and it didn't press the brake pedal , he was confused by medication and blurred vision with very thick glasses . The accident happened in October of 2010 , for the first 2 years he was somewhat okay but lately is escalating daily , Psychologist and Psychiatric Dr's think that he should be seeing by a Neurologist immediately but he refuses help. I done all kinds of drug test at the Met. Laboratory and all the panels come negative. I will appreciate to get help for my Son before is too late ...Thank You ,
Patricia Perazzolo

I believe in bringing out the best in the person. Good story. I try to keep my heart and mind pure so that my thoughts are productive and kind at each moment. Before I became a mental health consumer of services I was given honors by education institutions for a good conduct and marked coolness with intelligence as traumas put upon me were the initiators of my long psychiatric treatment history. Getting close to people was a problem for me too. Smart cool choices even for the mentally ill is the way to go. Keep those good recovery stories going. Goodness will win.

Much less hope for those diagnosed with Deficit Schizophrenia, from which recovery is currently impossible. It's a harsh reality many would like to ignore...

I used to have a problem taking my medication. I did not want it. Then I was given an injection and have been compliant ever since. I see my psychiatrist once a month and he gives me the medication intra-muscularly. There is even a three month version that has been approved.

Congratulations on your recovery. I have a theory that schizophrenia is genetic, and caused by the wearing of tissue in the brain--due to toxic stress or myeline degeneration. I cured my own schizophrenia in a rather unconventional exploration of alternatives. I used Marijuana as medicine, and effectively reprogrammed my mind and brain biologically through healthy thoughts and behaviors, but weed is known both to help epilepsy and muscular dystrophy, both clues to schizophrenia and bipolar. I am now diagnosed with bipolar disorder, haha, and am maintaining health without medication. I was put on Abilify at 30mgs for ten years prior to my realization--that I could possibly recover without stifling the communication receptors in my brain, where-as abilify doesn't actually stifle dopamine and is now known to be a dopamine agonist contrary to other anti-psychotics. And yet, my very belief in mediation and the alteration of my neurotransmitters programmed me to believe it was working to cure my paranoia, but to tackle the paranoia I had to tackle the biology and the basis together. Both therapy and biological cures are the way of the future. I never thought I would be free from schizophrenia, and in retrospect it's kind of illuminating that I did fully recover. I do not hear voices anymore. I don't know how weed cured my auditory hallucinations, the main lasting symptom I had. I also studied integration and neuroplasticity, wrote in journals and fact checked my memories after a counselor told me schizophrenia was permanent and that I would lose insight over time, and that I couldn't depend on my own memories only the doctor could tell me what happened--right before I told people I was well and asked to leave, this was called an "episode" merely pleaing to be believed in. I have also witnessed the supernatural reality of hallucinations. As the mind itself is like space and time existing beyond the brain/body and in an infinite spot. It is within the self and all around you. I have not had any return of symptoms so I am almost curious about what the hallucinations were causing to be so distressful. My hallucinations: I could hear my thoughts verbally, and sometimes broadcasted on radiowaves and through audio channels. It wasn't normal, it was an alternative perception that caused distress. I would hear people talk about my thoughts. And then the revelation, maybe the mind is infinite and maybe it can create reality? I have witnessed a thought manifest and I have witnessed time repeat. I have traveled through dimensions of realiity--hard to explain. Like looking at a digital clock and suddenly it jumps ahead, but to go backwards? All you have to do is forget....sleep, it's like amnesia--going backwards, but you are paralyzed to change anything because once you catch up--it's incredible--to see events repeat as if you are an outside observer. I have also reached for an object and it flung itself across the room. These I attribute to the passing of a friend, and a shift in time dilation or quantum entanglement. But knowing this truth is an enlightenment of information--to know that schizophrenia is merely a disconnect, or a deterioration of the tools of processing the biological input/output is a gift, because neurological difference can be the difference between genius and a coma. Anyways, heartfelt tribute to your son. Just wanted to say thank you for sharing a story of hope. I may have profoundly radical beliefs, but they are not delusions--and I can back them up. The funny thing about alternative realities is that no one else can see them unless they embrace infinite possibilities and do not deny them, because the belief is what created the possibility. Just like the belief you are sick, broken, because your genetics has caused a misfire or dysfunction, is an error--because we have potential to adapt and recover without medication or pharma. The reason weed works is that it repairs the communication receptors and actually mediates new patterns/paths in the brain, creates new dendrites I think, heals the brain physically, somehow--dimmers the light switch so you can function on a different scale. I don't use weed hardly as much anymore either, I have quit smoking pot for the most part. The healing already occurred--I don't need it for life just like I don't need Abilify anymore. The revelations my ten year journey from age 16 to 26 with schizophrenia gave me were immense. And I didn't break under the system. I merely spoke my views that I had the power to overcome/they denied me that right but eventually I proved it to come true.

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