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interview with Susan Frances Dunham
Beyond Schizophrenia: Michael’s Journey
Susan Frances Dunham
Today, RebeccasReads is honored to interview Susan Frances Dunham, who is here to talk about her new book “Beyond Schizophrenia: Michael’s Journey.”
Susan Frances Dunham was born in Cleveland and grew up in Port Clinton, Ohio, a small town on the shores of Lake Erie. Susie graduated from Port Clinton High School in 1972, and later graduated from Sandusky School of Practical Nursing in 1976. She worked as a nurse for three years in a hospital environment, five years in a nursing home setting, and two years as a private duty nurse. In 1982, she married Markus, a math teacher, and in 1984, their only child Michael was born. Susie now works as a manufacturer’s rep in the furniture industry, following in her family’s footsteps.
RR: Thank you for joining me today, Susie. I understand your book is about your son, Michael, who has schizophrenia. Will you tell us when your son was first diagnosed with schizophrenia and how that diagnosis came about?
Susie: Thank you, Robert, for the interview. Your question is direct and deserves a descriptive answer. People who suffer a “first psychotic episode” may have their symptoms spontaneously “go away” in less than a month. If their symptoms persist, but last less than a period of six months, they are then diagnosed with schizophreniform disorder. These patients may take antipsychotics for a period of time, and then possibly can be weaned from them. If symptoms persist after a period of six months, the diagnosis of schizophrenia is reached. These patients must take medication for the rest of their lives to alleviate symptoms. In answer to your question: Mike experienced his first psychotic episode on July 29th, 2005, but from a clinician’s viewpoint, couldn’t be diagnosed with schizophrenia until six months later.
RR: Were the doctors able to tell you what caused or may have caused the schizophrenia, or what triggered it to manifest? For example, I understand that a person may be able to manage schizophrenia and may not realize he has it, but then a traumatic event like a car accident makes the disease get out of control, and that’s when a diagnosis may be made? Is that often the case?
Susie: Robert, I want to answer your question respectfully. Schizophrenia is defined as a common neurobiological brain disease affecting 1.1 percent of the population worldwide, and is linked to a genetic predisposition or vulnerability, as is true of any other medical disease. Scientists around the world are performing genetic studies and investigating possible causes including environmental insults from latent or dormant viruses, retroviruses, exposure to chemicals, and difficult births. The list of “causes” that might trigger the disease is endless.
Still, there are professionals with many “letters” following their names as credentials, who actually believe that a traumatic event triggers the disease! I happen to espouse the teachings of Dr. E. Fuller Torrey who wrote the book entitled: “Surviving Schizophrenia,” and has studied the disease for decades. Dr. Torrey suggests that traumatic incidents are simply concomitant in young people’s lives and have little or nothing to do with the disease’s onset. Michael didn’t have a care in the world when the disease struck—no major traumas or losses, no financial liabilities or serious concerns.
In fact, I believe that Michael’s case of schizophrenia totally debunks the myth that stress or trauma triggers the disease. Schizophrenia really isn’t that difficult to diagnose! It’s hard to find the correct treatment. That’s why we must rely on the wisdom and experience of psychiatrists who are knowledgeable in finding the correct medications to alleviate symptoms that occur when the brain, a body organ, isn’t functioning.
RR: What were Michael’s schizophrenic behaviors that led you to seek help?
Susie: The acute onset of schizophrenia is always preceded by a “prodromal period” which presents with vague and confusing symptoms which may include: anxious moods, weight loss, withdrawal, decline in function, lack of attention to personal hygiene, illogical thinking and lack of insight, and most importantly, a change in sleep patterns.
Acute psychotic episodes are flagrant, including: delusions (false beliefs) and hallucinations (seeing, hearing, smelling and feeling things that aren’t real). Once we understood that Mike was indeed having psychotic symptoms, we sought help.
RR: Once you learned Michael had schizophrenia, how did you feel?
Susie: I was devastated and didn’t believe there could possibly be a good outcome for this serious brain disease. I had been out of nursing for over twenty years, but remembered well the patients I had cared for years ago, who were totally disabled—from the disease as well as from their medications.
RR: How did Michael react to the news that he had schizophrenia?
Susie: As parents, we kept our dialog with Mike brief, describing his condition as a chemical imbalance. As Michael slowly came back to reality, his psychiatrist told him what had happened. Mike simply couldn’t believe that such a devastating illness had happened to him. I’m sure that he wondered what he had possibly done to deserve such a debilitating disease. In my mind, as his mother, there was certainly nothing—he was a perfect son. In spite of the fact that Michael really wanted to “end it all” and get out of the mess that he suddenly found himself in—he fought back! He decided that he would survive, and challenged himself as no other person I have ever known. Michael is truly the hero of my story.
RR: Our reviewer here at RebeccasReads stated that before she read “Beyond Schizophrenia” she had a very generic view of what schizophrenia is. Could you give us a simple definition of schizophrenia as you explain it to people?
Susie: Schizophrenia is a brain disease. The brain is simply another organ of the human body.
RR: What would you say are some of the common misconceptions about schizophrenia?
Susie: The first misconception would be that people who suffer from schizophrenia are always dangerous. The truth is that they are 100 times more likely to be a victim of crime than they are as a perpetrator. The second misconception is that schizophrenia is the same as a “split personality.” How sad that we have such little education in place!
RR: In the promotional materials for the book, it says, “The Dunham family quickly becomes immersed in the nightmare world of mental illness in America: psychiatric wards, a seemingly indifferent nursing staff, and the trial-and-error world of psychotropic meds.” Will you explain to us just what you mean by “nightmare world”? Is the illness itself the nightmare or the treatments for the illness?
Susie: Michael’s torture, torment and true suffering are honestly described, through my eyes and voice as his mother in book. He bravely faced both the illness and cruel side effects of his medications. As parents, the illness apparently arrived “like a thief in the night,” disarming us, because we couldn’t possibly imagine that our child had suddenly become a victim of this horrible disease. The ensuing treatments/medications which caused Michael even more misery would cause any human being with a soul to shudder. But as many other parents must discover, in their early mournful period, while their child is still hospitalized and helpless—we found ourselves helpless as well. Unwittingly, we had to deal with psychiatric nurses who had become so jaded that they offered nothing in the way of support, education or resources to help us cope.
RR: What power does a parent of an adult with schizophrenia have? Did you need to get power of attorney, or does Michael handle his own affairs?
Susie: NAMI (National Alliance on Mental Illness) is a great resource to many parents on this issue. Fortunately, we never had to pursue getting power of attorney. Michael has always handled his own personal affairs along with our support. However, having said that, we have always kept paperwork in order with a signed “Release of Information” form, so that we can communicate with Mike’s mental healthcare providers.
RR: How successful has Michael been with his schizophrenia, such as finishing college, holding down a job, relationships?
Susie: Mike graduated from college in May of 2010 with a business degree, and worked in the private sector for seven months as a software developer. He’s decided to return to college to advance his education in computer science, and is engaged to a wonderful young lady. Michael has never had a recurrent psychotic episode or relapse.
RR: I’ve known or known of other people who have had schizophrenia, and of families who have really struggled to get help for their family members, including basically having to get a son or brother arrested and put in jail so he can be admitted back to the hospital. Would you say then, based on your previous information, that Michael has been very fortunate, or that his case has been mild compared to others?
Susie: Robert, the struggles many families experience are due to the way the Mental Health Care community approaches us. It is tragic and irresponsible that our privacy legislation limits families. Often, families must call law enforcers and insist that their loved one is either a danger to himself or others to get him admitted to a hospital for care. Throw in the fact that most law enforcers haven’t been adequately trained to talk to a person who is experiencing a psychotic episode and how to defuse the situation. Then follows the use of physical restraints, which I have read emotionally damage the person suffering from a mental illness. Sadly, most of these incidents could be avoided with proper legislation in place. On this level, both Michael and we as his parents were very lucky. Our family didn’t have to “add insult to injury.” I have sincere empathy for families who have had to endure this hardship and indignity.
Regarding “levels of schizophrenia,” people who reach the diagnosis of schizophrenia must meet certain diagnostic criteria according to the DSM-IV manual. Therefore, in my mind, a “mild case of schizophrenia” is an oxymoron. Statistics offer predictors of outcomes, and yet they are not totally reliable. Michael was fortunate to have his disease present after the age of twenty-one rather than in his teens. His onset was sudden and he presented with paranoia and catatonia. More importantly, Michael had a favorable response to his second medication and understood that he was sick. All of these factors more than likely played a part in his recovery.
RR: Susie, a lot has been written about schizophrenia. What made you decide to write a book as well? Did you write it primarily to educate others, or as a way of coping for yourself, or other reasons as well?
Susie: In the beginning, my writing was nothing more than nurses’ notes and journaling what was happening with Mike. I wanted to have my own timeline to evaluate Mike’s condition—hopefully, to document his progress. Later, I wrote short vignettes out of pain and catharsis, but found after two years of writing that I actually might have started to write a book. As time went on, and Mike appeared to be recovering, my work took on new meaning. With each new step toward Mike’s recovery, my motives in writing evolved and I knew I had to finish the book.
RR: How is Michael doing today, compared to when he was first diagnosed with schizophrenia? I believe it’s been about six years now since he was diagnosed?
Susie: Michael’s accomplishments are too numerous to describe. If you met him today, you’d find it hard to believe that he has a brain disease. He’s a fighter! I know that he will continue to challenge himself and accomplish things that even the lucky and well find difficult.
RR: How does Michael feel about your having written this book?
Susie: Robert, you’ve given me an excellent opportunity with this question. Any person who has authored a book has to go through a number of editors and consider how they must rewrite their original manuscript to convey their ideas to the reader. At some point, their book must have a final chapter—the book has to have an ending. I can only imagine that all authors have some misgivings even after their books have been published. I know what I wrote in my book regarding this question. What I didn’t write was this: “Michael, how do you feel about me writing a book about what happened to you?” Michael’s response at the time was this: “Mother, if you can accurately tell what happened to me and it helps somebody, it will give meaning to my suffering.” That was enough for me to continue.
RR: Have you had any responses yet from readers that the book has helped them, either to understand the disease better or to help them cope with helping a loved one with schizophrenia?
Susie: The overwhelming majority of responses to the book thus far have been from readers who didn’t understand the nature of schizophrenia. I’m grateful that by writing about Michael’s suffering, they learned something about the disease. I received a glorious comment on my website from a registered nurse involved with NAMI as a “Family to Family” facilitator who wrote: “Your book will go to the top of my list for families with schizophrenia.” If I can help but one person, my efforts were all worthwhile.
RR: How would you describe the reactions of other friends and family members to Michael’s diagnosis of having schizophrenia, and your decision to write about it? Have other people been supportive or did the word schizophrenia scare them off?
Susie: Shortly after Mike’s diagnosis, we bought twelve copies of the book entitled: “Surviving Schizophrenia” written by Dr. E. Fuller Torrey, and mailed copies to family members. We hoped they would read the book and gain a better understanding of the disease of schizophrenia. Because of Michael’s gentle nature, not one person was ever afraid of him. Mark and I accomplished what was necessary in this gesture with family members. Our friends as well, were never afraid of Mike because of his good manners and sweet disposition. However, no matter their apparent intelligence, often they were disappointing one way or the other. Some still believed the disease was caused by stress.
One wondered why, during Mike’s early recovery phase, he couldn’t work, performing repetitive and menial tasks. Another tried to quote something from Freud! Needless to say, I wasn’t receptive to any of these archaic ideas, and I often responded quite harshly. I had little patience with people who had not done their homework and tried to ignore their uninformed position. I don’t think Mike scared anyone off. I did! I wrote our story with honesty, and from the heart, and family members were supportive of my decision.
RR: What are the changes you’ve seen in understanding and treatment of mental illness since Michael was first diagnosed? Have things improved or gotten worse for the mentally ill?
Susie: Change is often slow, and accomplished by the small acts of many. Sadly, I don’t see any improvement among mental healthcare providers. Some of this is due to the current state of the economy in our country. Important funds for the mentally ill have been slashed—even after funds were cut many times before. Our elected legislative officials must understand that our state governments will have to pay for the care of people with severe mental illnesses, one way or the other. Do we want to treat people with severe mental illnesses in a humane way and help them reach their highest potential? Do we really want jails and prison systems to take the place of state hospitals? None of this makes sense to me. In the long run—no money has ever been saved. We simply renamed the providers of mental health services, and the new providers are inadequate.
RR: Is there anything people can do to change this situation in your opinion, legally or politically?
Susie: Yes. Write to your state representatives, your congressmen and your state governor. Tell them your story. People who suffer from brain diseases can get better—but not without help.
RR: What advice would you give to someone who is just beginning to cope with learning that his or her loved one has schizophrenia?
Susie: Without reticence, I would tell them, “You have a ‘hard row to hoe’—but you can do it, one day at a time. Please find your local NAMI affiliate. You won’t be alone.”
RR: Thank you for joining me today, Susie. Would you tell us what your website is and what further information readers can find there about “Beyond Schizophrenia: Michael’s Journey”?
Susie: Thank you, Robert. My website is www.SusieDunham.org. My website goes into greater detail about the book, drugs and treatments, myths and facts, warning signs, and what schizophrenia is along with possible causes.
RR: Thanks again, Susie, for a great interview. I’m sure, as Michael wished, your telling his story has helped many people.
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