Many readers of The Music Between Us: Memoir of a Bedside Musician have mentioned that among the book’s themes, the one that seems to emerge most prominently is what it might be like for someone living with a family where mental illness is a constant companion.
One reader said that although the emphasis on the powerful experience of playing music for patients in hospice care was enlightening, that is not what grabbed her attention. This reader had a brother who was living with mental illnesses under the same roof. It literally turned her world upside down. The neglect she experienced by her parents as they spent their time and energy caring for her brother had chewed into her self-confidence.
Another reader had a mother like my own. Diagnosed with schizophrenia, she was taken away to an institution. This reader was just eight-years-old at the time and ended up being raised in a series of group and foster homes. She still copes with the emotional damage inflicted on her at such an early age by her mother's disease.
Many more readers who grew up in healthy families shared stories of extended family members such as cousins or childhood friends who also lived with mental illnesses. Many of these readers had not fully realized what went on in the homes of these friends and loved ones until reading The Music Between Us, and how that probably impacted their relationships with them.
These conversations with readers have had me reflecting upon the prevalence of mental health issues in our society.
Surprisingly, there are millions of people in our society who get little attention—certainly, they are not often featured by popular books, films, or mass media platforms. Roughly five percent of all Americans are diagnosed with serious mental illnesses each year. Over 60 percent of these 16 million-plus individuals are parents. One doesn’t need a calculator to understand that we are talking about a lot of children. (In case you’re wondering, that’s over ten million people. There’s a chance that you or someone you know has been shaped by having a parent/primary caretaker who lives with a mental illness).
Experiencing mental illness doesn’t automatically mean that they cannot be good parents, especially if there is engagement with another healthy adult in the home. There are treatments that can be helpful and there are degrees of severity. But, in many instances, the environment of the home can be unstable. Virtually every one of us growing up this way has taken the trauma experienced in childhood into our adult years. The statistics show that we experience a higher degree of drug and alcohol addiction, unemployment, homelessness, incarceration, divorce, and suicide than the general population.
My story is an example of what can happen to a person raised in such an environment. When I was a kid, my single divorced mother was diagnosed with two serious disorders: paranoid schizophrenia and manic depression, the condition now known as bipolar disorder. Having both schizophrenia and bipolar disorder is widely viewed within the medical community as being among the worst of all mental health conditions because of the suffering it causes the person living with the mental illnesses and the ripple effects it creates within families. Only one percent of the U.S. population experiences schizophrenia, whose symptoms are often characterized as delusions and hallucinations experienced as persecution. That’s over three million Americans living with this illness and more than two million children living with it in the home.
Why do children such as me have such a difficult time adjusting as adults? Quite simply, because we were unintentionally abused or traumatized if our primary caretaker was living with mental illnesses. It’s hard to feel secure when your parent is chasing you through the house with a knife because they are fearful that you are a spy who is plotting against them. You learn not to trust them, or other adults, even after you have become an adult yourself years later.
Mental Health Resources
National Alliance on Mental Illness: NAMI.org. They have offices in all 50 states.
The other reason adult children of those living with a mental illness have difficulty in adulthood is that, just like kids in healthy families, they learn to model the behaviors of their parents. It becomes their default programming. Lacking a capacity for intimate relationships and being low on self-confidence, they often end up either overly assertive, or shy—almost to the point of reclusiveness. Both are coping mechanisms for living with an undertow of ongoing fear, as well as the shame of being found to have come from a family that is "not normal."
In my teens and as a young adult, I became very aggressive, defiant of authority, and generally mistrustful, but especially of women. This played out in a series of broken relationships, frequent early job losses, and most of all, in the complete rejection of my mother, whom I blamed for all my life problems and intentionally neglected.
Most of my life relationships suffered from degrees of emotional distancing, making them ultimately unsatisfying and short-term. However, after years of therapy and a deep spiritual quest, by middle age, I had figured that most of my worst behaviors had been overcome and that I was as “fixed” as I would ever be.
I feel I was fortunate to have eventually found stability in my life, as many adult children impacted by schizophrenia do not. I eventually married, had emotionally healthy children, and was a successful business leader in my chosen field. Yet, all these measures of success merely cloaked my emotional emptiness. Something undefinable was still missing and it didn’t reveal itself until years later when I was a retired grandfather.
One day, sitting at my home computer, an email arrived from a company called Volunteer Match. They had posted a recruitment ad for a local hospice seeking volunteers to spend time with their patients. These men and women were terminally ill and dying in hospice from any number of illnesses, including dementia, cancer, and cardiovascular issues. The notion appealed to me.
I quickly thought, “What might I do to ease their situation—read to them? Engage them in conversation about their lives? Do craft projects with them? Just sit quietly with them?” Yes, was the answer to all these questions. But one activity stuck out in my mind: guitar playing. Although an amateur guitarist, I figured I was good enough to share my music with these folks. So, I became a hospice volunteer musician, and the patients and I would become companions, keeping beat with one another through a shared love of music.
During the following four years, I discovered that healing can sometimes come in the most unexpected of ways. Ironically, I found myself healing my own wounds with the help of people who could no longer heal their bodies. Being in that sacred place of connection with them, enjoying their stores, and revealing my own, brought back old, buried family memories. And it finally felt safe to explore them.
I gradually arrived at a point where I could forgive my mother for a sickness that was no fault of her own, and also forgive myself for taking so long to realize it. This was possible all because she had encouraged me to be a guitar player some sixty years earlier before her illnesses consumed her.
If you’d like to know more about me and my story, you can find my memoir on Amazon: The Music Between Us: Memoir of a Bedside Musician, Copyright 2020. One Guitar Place Press.