The Words of the Havens Family
In any given year, approximately one in every four adults in America suffers from a mental illness. (Rosalynn Carter, Within Our Reach, p. xxxiii). We believe our story tells about events that many families in like circumstance will be able to relate to. It is meant to be a voice for those who, up until now, have had no voice and few options opened to them. Furthermore, it is hoped that it will serve as an initial step in helping our church community understand and feel greater compassion for families suffering the consequences of a mental illness.
This article is being written based on our experiences that show..."Mental illnesses are complex brain disorders and people who have a mental illness cannot help that they have developed the condition. We also now recognize that environmental factors play a powerful role. And finally, we have learned that when people with mental illnesses seek treatment and work on recovery, their thought processes become healthy." (Carter, p. 15) No two individuals experience the same symptoms, nor does anyone experience them continuously. Some people go days, weeks, months, or years without an "episode". Just after the onset of our son's mental illness in his late teens, we believed it was a life sentence that would it was a life sentence that would totally incapacitate him for the rest of his life. We agonized over whether we would ever see our son normal again.
Mrs. Rosalynn Carter, wife of former U.S. President Jimmy Carter and advocate for mental illness, summarizes in her book Within Our Reach how widespread the problem of mental illness is in America today. "The mental health problems facing our country are the problems of all citizens. The people with these problems are ourselves, our families, our neighbors, and our friends. Mental illnesses do not discriminate, they touch every quarter of our society: parents, teenagers, siblings, people living in rural settings, in cities, and on Indian reservations. They touch lawyers, the clergy, and CEOs." (Carter, p. xxiii)
Often it is impossible to tell that your neighbor, whom you talk to over the fence, a co-worker you work with every day, or your minister might be suffering from some form of mental illness. Remember, we are only one family of many dealing with mental illness within our church community. We could be the family sitting next to you at church, who is suffering in silence up until now.
However, today there is so much more reason for hope. As our son's doctor told us, even though these illnesses have existed since Adam and Eve, due to medical advancements and community support, there has never been a better time in human history to recover from a mental illness. It has only been within the last fifty years that medication, good medical care, as well as community involvement has led to recovery from a mental illness 80-90 percent of the time, resulting in a normal, happy life. (Carter, p. 23)
"Anyone with a mental illness can be greatly benefited by five things, according to Dr. Elyn Saks, professor at the University of Southern California Gould School of Law, who suffers from mental illness: 1) professional help; 2) good fortune to respond well to medications; 3) supportive family and friends; 4) accommodating workplace and work you love; 5) coming to terms with having an illness and the need for medication." (Carter, pp. 21-22)
Only a few chapters in the story of our experience dealing with our son's continuing recovery from mental illness are included here and are not meant to be an academic discussion focused on the subject; this can be found in books. Our son has taught us more than any textbooks could about both the suffering and the courage it takes to deal with a health problem of this magnitude. It is also not meant to be an overarching reflection typical of all other families dealing with this major health concern in our community; that is their story to tell. Our hope and prayer is that our story will inspire other families to share their own experiences with mental illness.
This story is written anonymously to protect our family's privacy. For this reason, our son will be called by the fictitious name of "Victor", which is short for "victory" for the victorious life we believe he will have in the future.
July 1, 1982, we participated in the 2075 Couples Blessing Ceremony of the Unification Church tradition and three years later our son was born. From a very young age, education was the focal point of his life. He preferred books to toys; he liked to read about famous people like Martin Luther King, Jr., Helen Keller, and Abraham Lincoln. Our son was growing up as all young people do, going to school, playing video games, and working on homework every night after school. His teachers called him a "model" student, which made him try even harder to live up to their expectations.
Both sides of our family have some history of mental illness. Our son's great grandmother on his mother's side spent twenty years in a mental hospital because that was all they knew to do back then. His grandmother on his father's side had an unusual incident while attending nursing school, according to his grandfather, but it was never talked about after that. In her mid-fifties, however, she began acting very strangely, including going to a bar in the middle of the night, dressed in a bathrobe, talking to a man she didn't know, which was highly unusual for a woman who never drank. Within time, she recovered, but soon after that, died of cancer. The bar incident was a closely guarded family secret from then on.
Victor's seventeenth birthday marked the beginning of a long journey down a lonely road we could never have imagined. Mental illness was the farthest thing from our minds. Some warning signs associated with the onset of mental illness were probably there when he was young, but we didn't know enough about it at the time to be able to recognize that anything was wrong.
It was two weeks before his tenth-grade final exams, so stress was at a very high level with tests to study for and papers to complete. It struck us as very odd when he began to withdraw from us, going deeper and deeper into himself. At the same time, he was involved in a frenzy of activities and became easily agitated, behavior that seemed very out of character.
The evening before his birthday, Victor informed us that all of his class notes for the entire semester were totally out of order, so much so, they could not be used to study for final exams. Since he was such a good student, it seemed as though he was not only losing some control over his homework, but over his life as well. What was going on?
The following day was like waking up to your worst nightmare -- like being in a car hitting a brick wall at 85 miles an hour. Victor seemed to have lapsed into a whole different reality. He was seeing and hearing things that didn't exist. He was unable to recognize his own signature in school books loaned to him, thinking they belonged to someone else. We drove him to the supermarket to pick up some things for his birthday celebration. He didn't recognize many familiar landmarks, asking if the Burger King, where we often ate, had always been there. Once in the store, simple directions on what to pick up for lunch were beyond his ability to understand. He didn't seem to know us and we certainly didn't know what had happened to him.
Although we were in excruciating emotional pain seeing our son's condition, this was not a time to panic. We searched our minds to figure out what to do next. Realizing he was not in a place where we could help him, we called his long-time doctor, who told us to take him immediately to the hospital. A blood test was run to see if he had taken any illegal drugs, perhaps given to him by another student, causing him to be delusional, something he had never had a problem with before. This was a long shot, but in this case, it would have been the preferred test result, since it would hopefully be a onetime occurrence.
Unfortunately, this was not to be. The blood test came back negative for drugs.
Next stop, a psychiatric hospital to determine what had gone so terribly wrong with our son, who was promptly admitted and heavily sedated for ten days. We went to visit him and with each passing day, normalcy was beginning to return: he was speaking like himself and the only thing he wanted to do was come home. We all yearned to leave this place of constant locking and unlocking of metal doors.
An appointment was scheduled with a doctor at the hospital, who in a somewhat matter-of-fact tone, informed us that our son was manic/depressive, an illness most recently known as bipolar disorder. What in the world was bipolar disorder? Years before, on a few occasions, we saw it being discussed on the public television station as we channel surfed, but since at that time it was not our problem, we paid no attention to the broadcast. Now all that had suddenly changed.
Once home from the hospital, we were very aware that we were facing a new reality. His birthday cake had long since been tearfully thrown away. A week later, when he was up for it, we celebrated his birthday with a new cake and a gift of a mountain bike, which he pre- tended to appreciate, but shock, pain, and despair could be seen all over his face. School was out for the summer, so Victor could use the time to relax and regain his composure.
We have learned that Victor was experiencing a "manic episode", which has occurred only twice in the past nine years and lasted a total of four months. It was eight years between the two events. It may be months or years before it happens again. Of any characteristic that can be said about bipolar, predictability is not one of them.
Mania is related to chemical changes in the brain and is influenced by genetics and environmental factors. Our son's symptoms have included: "abnormally and persistently elevated, expansive or irritable mood" as well as "inflated self-esteem or grandiosity," "decreased need for sleep," "more talkative than usual," "flight of ideas or subjective experience of racing thoughts," "distractibility," "increase in goal-directed activity," "hallucinations," and "depression."
When we asked Victor how he felt when he realized he had a mental illness, he said: "I was definitely shocked; I didn't know what had happened to me. My experiences melted together, one memory becoming indistinguishable from another. It took me a long time to come to grips with what had happened to me and it shook me to my very core. Finally, after a couple of years, it was possible to put my thoughts and feelings into writing and relive those painful memories."
Almost as challenging as the mental illness itself is finding the right doctor(s) and suitable medications. Fortunately for us, we have a very good psychiatrist, whom we see every four to eight weeks. He dispenses our son's medication and answers the many questions we have about Victor's illness and what we can do to help him recover.
During our first appointment, observing the fear and deep sorrow on all our faces, his doctor said, "Don't worry, this is doable. There are many drugs available today that we don't know why they work, they just work." He assured us that with the right medication and medical care, Victor could live a normal life.
The doctor stretched out his arms as far as they would go and said, "What is considered normal goes a very long way." He said that our son's outstanding, positive character traits would far outweigh any limitations imposed on him by his mental illness. There are no words to describe the relief we felt at that moment.
However, finding the right doctor(s) can be frustrating and time consuming. "Training materials for primary care doctors, where most people go first for a diagnose and evaluation of mental disorders, often have little relevance in helping a new doctor accurately evaluate the symptoms of his/her patients." (Carter, p. 25) For this reason, it is advised to seek out a doctor of psychiatry, who has many years of training in the field of mental health.
Although our psychiatrist has helped stabilize our son's illness, we have not been as lucky in finding a competent therapist. Several unsuccessful attempts were made to get our son into therapy, as it is also suggested for those with bipolar. After a few visits, it became very obvious that these so-called professionals were poorly trained in this subject matter. One social worker advised us to get our son involved in kick boxing, which would not have helped our son at the time, and another psychologist seemed content to engage in casual conversation, offering little pertinent advice and charging over a $120 an hour.
The good news is that most of the time medications help Victor keep his moods in check. Victor takes several drugs, including a commonly recommended drug for bipolar -- lithium. Until there is a cure, and Victor's doctor feels there will be someday in the near future, these medications are vital to his recovery process and his ability to live a happy, productive life.
The bad news is pharmaceutical drugs have become a large profit-making business. The cost of medications can be very expensive, which can be devastating for a family like ours with no insurance. For example, one medication costs $700 and another $280, totaling $1,000 per month for medications, that, according to his doctor, cost $.03 a pill to produce.
Our doctor gives us free samples from pharmaceutical manufacturers and some pharmaceutical companies offer medications free online. Recently, we have started using medications that have been around for a long time and gone generic. We have found them to be just as effective as the newer medications on the market.
More than the illness of bipolar disorder, often the greatest ongoing challenge is dealing with the side effects of his various medications. Side effects include nausea, loss of appetite, weight gain/loss and fatigue among others. Taken over a period of time, these medications sometimes lose their effectiveness and have to be switched to yet another drug.
When it comes to getting the medications that work best for every person, it can be a very complicated process because one size does not fit all. One patient may respond well to one drug and not another. Some stay on the same drug regimen indefinitely, while others are allergic to every drug prescribed to them. Victor probably fits somewhere in the middle, having taken many different drugs that work for a period of time and then must be changed. The goal is to find a group of medications that work for a prolonged period of time.
Regardless of the difficulty of finding a good doctor, the high costs associated with medical care and medication side effects, we are very grateful for the medical care our son has received. The alternative would be inconceivable when considering the tumultuous and unpredictable life that would result without this health care.
Victor is a living, breathing example of what it means to be in recovery from a mental illness. After finishing high school, he completed his Associate of Arts degree with high honors. Currently, he has a part-time job and occupies the remainder of his time with community service work.
Our son's recovery is based on our experience that an "individual with a serious mental illness can function well and make positive contributions in their own communities. They can take responsibility for their own recovery and can learn from and teach other consumers. Like those who suffer from other chronic illnesses such as diabetes and heart disease, they can manage their own illnesses. Individuals must define the goals of their recovery. For some that may mean going off medication and living symptom-free. For others, it may mean taking medication to help with symptom management. For still others, it may mean experiencing an improvement in quality of life or regaining a sense of purpose and meaning. For all, it means a sense of hope and connection to community." (Carter, p. 151)
Even living with Victor 24/7, it is very hard to tell that he is dealing with anything out of the ordinary. Drug side effects are the most obvious. Just like any family, we have our ups and downs, which we continue to learn from and deal with as time goes on. As his parents, we are encouraged by the kind of person he is and the potential he has for the future.
So the answer to our question, "Would we ever see our son normal again" is, gratefully, a resounding "Yes". His condition is not obvious to anyone outside of our family, there are only a handful of people who know about it, one being his doctor. His grandfather, who recently passed away, was not aware that his grandson had bipolar. We saw no reason to tell him. After all, he never told us about what had happened to Victor's grandmother, who acted very strangely that late night at the bar.
Why was his grandson's condition kept from him? Stigma! Far worse than the disorder itself, is the label attached to mental illness by our society, largely based on the many misconceptions placed on it by the media.
The greatest obstacle to recovery is the stigma placed on the illness by our society, a sort of punishment for being sick. Stigma can be defined as "a mark or label imposed by others that leads to devaluation and discrimination." (Carter, p. 4) It is the number one reason why the majority of those with a mental illness do not seek help for fear of being labeled as less than what they are.
What people believe about mental illnesses can be far more disabling than the illness itself. The current culture makes it very difficult for someone with a mental disorder to get well because of the attitudes and stereotypes based on "beliefs that those with a mental illness will never be able to function in society. They suffer from impaired judgment and can't trust their own thinking. They don't understand their own needs, and someone else needs to take care of them... It is based on the belief that recovery is not possible, that they can never be moved through and out of the system." (Carter, p. 150)
Stigma regarding mental illness can be largely blamed on poor public education and sensationalization by the media. We have had first-hand experience of the media sensationalizing mental illness, when for a period of two years, we would turn on the evening news to find that all too often, when a violent crime was committed, the perpetrator of the crime was said to be suffering from bipolar disorder, and the crime received media attention for days. It got to the point that we prayed that when another violent crime was covered on the news broadcast that it was not someone with bipolar, especially when we doubted the authenticity of these claims. It seemed to become a catchall phrase for those responsible for many violent crimes. Recently, it appears that it has become less fashionable to mention this on the news, but a lot of damage has already been done.
"At no time was it ever mentioned on the broadcast that only two percent of all the violent episodes in the United States can be attributed to people with a mental illness." (Carter, p. 8) In fact, "people with severe mental illness are much more likely to become victims of violence -- assault, rape, robbery, and murder -- than the perpetrators. The annual incidence of violent crimes against people with serious mental illnesses is more than four times higher than the general population." (Carter, p. 7)
In the book, The Bipolar Relationship, by Jon Blouch, et al., the authors state:
"Many misconceptions exist about this illness (bipolar), due in part to the media, which frequently focuses on individuals who demonstrate the most severe symptoms of this disorder. For example, they report on actors who appear disorganized and incoherent in their speech; others, who demonstrate drastic and inconsistent changes in their behavior and appearance; and still others who act in ways that endanger themselves and others. Similarly, the media repeatedly describes criminal behavior as influenced by bipolar illness. However, while some people exhibit extreme symptoms, most do not.
The reality is that many who live with
bipolar illness are highly successful individuals, both in their
relationships and in their work. People in every walk of life -- many
of whom are extremely creative, interesting, and have achieved great
heights in their field -- live with bipolar illness."
(Blouch, et al., p. 5)
Famous people who lived and are living with mental illness are:
Lord Byron – writer
Ralph Waldo Emerson – writer
Stephen Foster – musician
Theodore Roosevelt -- U.S. President
Abraham Lincoln -- U.S. President
"Sting" (Gordon Sumner) -- musician, composer
Patty Duke – actress
Buzz Aldrin – astronaut
Winston Churchill -- Prime Minister of England
to name only a few
Mental health is only one of the many priorities facing our church community. There is a long road ahead in the development of programs that will effectively deal with the complex matter of mental illness.
It has been found that many people with a mental illness turn first to their clergy for guidance. Think about how much progress could be made if there was a campaign within our church community to help end stigma directed against mental illness which would serve as an example to the other 300,000 congregations in America. This would truly help to open the minds and hearts of all Americans and serve as an expression of the True Love of our Heavenly Parent.
A very long journey still lies ahead of us, but I conclude with a final quote from Mrs. Rosalynn Carter:
"...Ultimately, the way we treat
people with a mental illness in our society is a moral issue. To
neglect those who through no fault of their own are in need runs
counter to our core principles -- the values of decency and equality
that we hold dear. Today, with our knowledge and expertise, we have a
great opportunity to change things forever for all people with mental
illnesses by moving forward into a new era of understanding, care,
and acceptance. Think of what that would mean: a real future for
them, with so much pain and suffering gone, with the chance at last
to live full and productive lives."
(Carter, p. xxv)