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Personal Accounts: My Mother's Schizophrenia: What I Didn't Know Helped Me
Steve Einhaus, B.A.
Psychiatric Services 2009; doi: 10.1176/appi.ps.60.2.145
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Mr. Einhaus received his bachelor's degree in economics from Eastern Washington University in Cheney, Washington. He is a peer counselor for a state psychiatric hospital, and he was the Washington Behavioral Healthcare Conference Employee of the Year in 2008. Send correspondence to Mr. Einhaus at einhasg@dshs.wa.gov. Jeffrey L. Geller, M.D., M.P.H., is editor of this column.

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During my childhood years, my biological mother's history was shrouded in secrecy. I was adopted by my paternal grandparents as a six-week-old infant. I always wondered why my mom was different. I never understood why other kids lived in typical households with a mother and father and I didn't. I would visit my mom in strange settings, such as group homes and halfway houses for people with severe, chronic mental illness. We met about once a month for dinner at McDonald's, and I was always so ashamed to go. My mom was overweight, shoddily clothed, and different from anyone I knew. As I got into my teens, my grandparents would tell me stories about the state mental institution, but I never equated them with my mom. I don't know who I thought she was. I was too young to understand the repercussions of schizophrenia at the time and how it would affect me as an adult. One comment she made to me at one of our dinners had devastated me. When I was 13, she simply said, "You are disabled." I don't know if she meant that I was showing preliminary signs of mental illness, but I left that night in tears.

My grandparents took great pains to make sure I grew up in a stable, secure environment and protected me from what could have been a horrific childhood. The wisdom of my grandparents prepared me for a horrid event of my own in adulthood. This event ultimately has shaped who I am today, in so many ways. They shielded me from the dank, dark world of mental illness. By raising me the right way, they prepared me for the cross that I have had to bear. That cross is a diagnosis of schizophrenia. The undercurrent of this first-person account is a simple premise. I want to show how not knowing about my mom's illness allowed me to cope with it effectively. This account is a tribute to my grandmother and grandfather—a letter of thanks—for being there and teaching me the tools to succeed in life. Although they both passed away a long time ago, they still live on in and through me and indelibly molded my way of thinking.

The toughest part of growing up was always wondering why my mom was different from other people and the prototypical family. She heard voices and had hallucinations that I was unaware of at the time. I could not piece together in my juvenile mind what was occurring with her and how badly mental illness had destroyed her own life. She had been a gifted student and was going to the University of Washington to get a degree in teaching when tragedy struck her in the form of psychosis. She never recovered. The treatment back in the mid-1970s was not nearly as advanced as it is today. The medications were at best archaic, and there was very little awareness about mental illness. The situation has changed tremendously. Today there is more awareness about the illness and treatments that help people to recover at their own pace. What I am trying to say is, after going through my first break with reality, I gained an appreciation for what it must have been like for her. I had always been ashamed of my mom because she was different. Now, I am just thankful to understand the experience she had to go through that altered her life forever.

My childhood was pretty good. There were some glitches, but I grew up in a suburban, quiet neighborhood in a nice home. I went to good schools and excelled academically. I had and still have a good base of friends whom I grew up with. This stability prepared me for what has been a tough row to hoe. By growing up far away from the world of mental illness, I was blessed with a "normal" childhood. As I got older, I learned that there are countless people with mental illness who are discarded by society or who grow up in such squalid conditions that they don't have access to the tools to cope with life, as tough as it is without a mental illness. I can't imagine what they have to go through facing such stacked odds. I am lucky I am not one of those people.

I found three benefits of not knowing about my mom's illness while I was growing up. The first of these was that I did not stigmatize myself as a person with a disabled parent. I believed and still do that I have a shot at a fulfilling, healthy life even with a mental illness. There are lots of people who get sick and lose their motivation and focus. This is part of the illness, a symptom known as avolition. My grandparents taught me a good work ethic and believed that good things would happen to people who work hard and are honest, including me. This philosophy kept me on the straight and narrow.

I had no clue that I was going to undergo a psychotic break with reality at age 20. When I did, I was fortunate to put the pieces of the puzzle together and realize why my mom was different. Eleven years later, I can look back and see the wisdom of not revealing that my mom was sick mentally.

The second benefit was that I did not buy the lie that because I had a mental illness I was a helpless, hopeless individual. It takes lots of courage to go into a cold, indifferent world with two strikes against you, being adopted and having schizophrenia. The good news is I am not going it alone. The guiding principles that I learned from my grandparents have helped me reach a level of success unknown to some in the world of mental illness. Going through a psychotic break hit a major reset button in my head, and I had to reinvent myself. My grandmother did not know how to navigate the mental health care system but delegated the task out to the people who could. I navigated most of those shark-infested waters by myself, with little more than my broken mind to guide me. There is an enormous amount of stigma regarding mental illness. Unless you have lived it or seen it firsthand, you can't imagine the amount of damage it does to the individual who is going through it. I had to grow up emotionally and socially all over again. This is a work in progress. With the help of mental health counseling, I am catching up to my peers and am seeing real progress in my psychosocial development. The breakthroughs in medications are advancing exponentially. Someday, there will be a cure for schizophrenia, hopefully sooner rather than later.

The third benefit of not knowing as a child of my mother's mental illness was that when my own psychotic break occurred, I became reflective, questioning my past and my identity, which assisted my recovery. My mom died when I was 16, and barely having known her, I knew little about the genetic traits she passed on to me. I was perplexed about who I was and what I was becoming. The saving grace was that when I was 18, I read an article in U.S. News and World Report about schizophrenia and its genetic predisposition. I remember thinking at the time "Man I am glad I will never get that." Then at 20, when I was on the psychiatric ward, I thought about what Mom had gone through and the lightbulb came on. The postscript to this quandary is that in that dark period, I saw a ray of hope through my understanding of her past.

About a year-and-a-half ago, I discovered that I have a half-sister. She lives two miles away from me and grew up in similar circumstances. She did not have the chance to meet our mom because she was born after Mom had her first break with reality. Fortunately, my half-sister did not inherit the schizophrenia gene. We have become close in the past year and are beginning to unravel the mystery of who our mom really was. This has given both of us a sense of connection with the world and acceptance of each other. It has been a blessing.

Rewind to June 2002. As I was walking the stage at my college graduation ceremony, I looked up for a moment and thought about my grandparents. Armed now with a degree in economics, I was so thankful they laid out a path that was good and had a vision for my life not inhibited by mental illness. I am also a peer counselor at the psychiatric hospital in which I had resided 11 years ago. I get up in front of classes and talk about my experiences with mental illness. I am always grateful for the vision my grandmother had of my graduating from college and getting married some day. One down, one to go. Depending on when I get my master's, I hope to go for a doctorate. I have some ideas about the recovery process. I believe they are worth sharing. I hope to leave the world like my grandparents did, a better place than I found it.

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