CVO: Tell me a little about yourself and why mental health is important to you.

Two big factors brought Mental Health issues into my life. First, I am trained as a professional counselor with a master’s degree in social work and a long career (over 30 years) in this field. Secondly, my younger son has lived with a severe mental illness for over 20 years, since he was first diagnosed at age 14 in middle school. His illness has impacted both him and our family in tragic ways over a very long period of time. He survived many suicidal and self-harm episodes during his teenage years before his disorder evolved into a devastating illness characterized by psychotic symptoms. During a major psychotic episode, he assaulted me and killed his father when my husband intervened to rescue me.

Lest anyone ask how we could “let” this happen, we did not “let” our son develop mental illness nor did we cause him to develop mental illness; just as no parent lets nor causes a child to develop leukemia, a brain tumor, or another devastating illness, we did everything we could to seek and provide the best medical and psychological treatment available. He was hospitalized many times, was prescribed many different medications, and participated in multiple sessions of group and individual counseling. My husband and I were partners in this journey of our son’s horrific roller coaster ride with mental illness. We fought. How we fought! But this illness beat us when uncontrolled Psychosis came to battle and refused to respond to treatment.

CVO: Many often ponder if mental illness is a real illness, what are your thoughts?

Mental illness really needs a new name that accurately reflects its nature. It is a disorder of the brain and the best name for it is simply, brain disorder. Like cancer, brain disorder lists a long line of diagnoses under its title. Many brain disorder diagnoses are quite different and require different types of treatment. Just as lung cancer is different from breast cancer, the brain disorders depression and schizophrenia are very different from each other. Many research studies over a very long period of time have confirmed that the diseases we call mental illness are caused by mistakes or malfunctions in the brain. Many factors are involved, including brain chemistry, neuronal circuitry, and genetics, as well as environmental and trauma-related insults to the brain. Brain disorders that affect thinking, behavior, and emotions show themselves in confusing ways to both the individual with the disorder and the family and friends of that person. While research can tell us where brain disorders often are based, it has not yet revealed the secrets of prevention, cure, or even trustworthy treatment options.

CVO: How did you become a mental health advocate for others?

As I began to recover from the trauma of what happened in my family, I knew others could benefit from my story. I wrote my book and began speaking at conferences and other venues. I respond to phone calls and emails from families who are seeking resources or simply need someone to listen and understand. God sent many helpers to me during this 20+ years on the mental illness roller coaster. I talk about this in my book. I want to help others like I was helped. There was never a sure or easy path through the early years of my son’s illness. My training in mental illness helped me immensely in understanding and recognizing what was happening in my family, but finding effective resources for treatment was always a huge challenge. We had the best available treatment options, but the best was wholly inadequate for my son’s intractable illness. The doctors, therapists, and hospitals did the best they could but it was not good enough. My son did experience periods of stabilization which gave us hope for his eventual recovery, but the illness was cyclic and always came back to halt any real progress he made in being able to re-establish a productive life. I know I am not alone. I want others to know they are not alone.

CVO: What are some of the stigmas surrounding mental illness and how do we overcome them?

Your earlier question regarding the public’s lack of understanding that mental illness IS actually an “illness”, underlies the stigma that people with brain disorders experience. Only when they are understood in the same way we understand cancer and heart disease will brain disorders gain the public compassion we feel and express toward someone who is diagnosed with breast cancer or who has had a heart attack. The person hurts, is scared, and loses major control over his or her life. The unknowns in the person’s life are huge and may be debilitating emotionally, mentally, and spiritually, as well as physically. As friends and relatives, we provide comfort and support for the families of the individual. We do not look down on a mom with breast cancer or call her derogatory names. We do not criticize a person who has had a heart attack because of his limited strength or call him lazy or unmotivated. We do not shame cancer and heart attack victims for not being able to work during the most serious part of their illness. Cancer, heart disease, and brain disorders are all serious illness that may lead to death. We still have much more to learn about each of them. While each disease is unique, there are similarities in how families and individuals travel the illness’s journey. Persons with cancer or heart disease may have both good and bad days, e.g., periods of extreme pain and debilitating weakness, as well as stable periods of remission or recovery following treatment. They do not forget they have a serious illness, but the individual is often able to return to a productive life. And they continue to monitor their own health with appropriate follow-up medical care. The same is true for many individuals who have been diagnosed with a brain disorder such as depression, anxiety, bipolar disorder, and sometimes the schizophrenia spectrum disorders. Unfortunately, the stigmatizing attitudes surrounding brain disorders are not only felt but may even be thought by the person with a debilitating brain disorder like depression or schizophrenia. Despite having a debilitating brain disorder, the person with the illness is
not immune from his or her own sense of shame because of the diagnosis. Even more disturbing to me is the “big picture” stigma displayed by our country’s leaders in failing to provide resources toward discovering the prevention and cause of brain disorders and finally implementing effective treatment programs nation-wide.

CVO: May 2016 is Mental Health Awareness Month. What are some of the most important messages to convey?

Mental illness is a brain illness—a brain disorder. It responds best to early intervention, just like cancer or heart disease. It must be recognized as a medically challenging illness. It is often hard to diagnose and hard to treat. Resources are sometimes difficult to find and afford. However, waiting to seek medical help only increases the challenge, likelihood of a poor prognosis, frustration, and heartache. Families and individuals need to know going in that it is an illness that requires perseverance and new learning. You likely have not encountered a more confusing, potentially lethal illness. Fight it. Treatment is available. There is hope. You are not alone. One in 5 families experiences the brain disorder of a loved one, commonly referred to as mental illness. Think about it—20% of the neighbors on your street; 20% of your co-workers at the office; 20% of your friends at school. Twenty percent of the families in our country, a
much larger percentage than families experiencing cancer or heart disease in a loved one suffers from mental illness.

CVO: Thank you, Benny for sharing with us a portion of your deeply enriching story and for allowing us a small glimpse into an event that shattered your world forever. Please come back again and share more; we are forever learning and leaning on people like you to guide us and teach us along the way. Thank you.

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