Friday, February 22, 2008

WHAT SYSTEM?

In an article in the Raleigh, NC News & Observer dated February 17th we find this statement. “We don't have a system that recognizes or identifies a crisis at a stage where we can give them services until it becomes a problem," said Sen. Ellie Kinnaird, a Democrat from Carrboro on state legislative judicial committees. "We've got to change the whole thing.”
The root meaning of system is a regularly interacting or interdependent group of items forming a unified whole. As the commercial asked years ago “where is the beef?” we can ask today “Where is the mental health system?”.
The above quote is from an article telling about the death of a young woman in one of our prisons here in North Carolina. Speaking of her the article says, “ The mental health diagnoses were long and complicated. Bipolar disorder, depressive disorder, paranoid schizophrenia, schizoaffective disorder, post-traumatic stress disorder, alcohol abuse, cocaine abuse and borderline and antisocial personality traits. “
It also says, “Officials with the N.C. Correctional Institution for Women say Bouleris wrapped a sheet around her neck and hanged herself from her prison bed, leaving a family wracked with grief, guilt and haunting questions.”
It is not unusual to get a number of different psychiatric labels if you come in contact with the system or non-system over a number of years. That is my own experience. I have gone from paranoid schizophrenia to bipolar disorder since 1964 until now and I am leaving out a number of others simply because I can’t remember them. One point it makes is that making a psychiatric diagnosis is not a science.
However, the death of this young lady makes a far greater point. The lack of a system in this state and certainly an apparent lack of forensic services. This brings me to a point I have made before. We needed someone in charge with experience. We are people not natural resources.
In the same article we read, “Kidder [the mother] has heard from friends and relatives of inmates still behind bars, prisoners too fearful of retribution to risk corresponding on their own. They have relayed that Bouleris was very open about her suicide plans. They say the guards did not check on her at the 6 a.m. shift change on Jan. 26, the day she was found dead at 8:30 a.m.
"This just totally changed the grieving process," Kidder said. "Now I'm angry."
Why, Kidder wonders, were the suicide threats not taken more seriously?
"If she's telling people she's suicidal, you just can't ignore this," Kidder said. "Even if she cried 'wolf' 100 times, guess what -- it's time 101, you still listen."
Keith Acree, a spokesman for the state Department of Correction, said the State Bureau of Investigation was looking into the incident, standard procedure.
The autopsy report was not complete last week, according to Chief Medical Examiner John Butts, but his office is investigating the death as an apparent suicide.
State prison officials, too, are examining their actions, Acree said, but their findings will become part of Bouleris' inmate files and not available for public scrutiny.”
Consumers and family members can no longer tolerate this non-system that shatters souls and leaves broken brains feeling helpless. What System I ask?
You can reach me directly at edcooper@projectdreamagain.com
{Being on this resource list does not imply their endorsement of this BLOG.}
www.mentalhealthministries.net
www.pathways2promise.org
www.mentalhealthchaplain.org
www.annafoundation.org
www.ncmentalhope.org
www.faithnet.nami.org

Monday, February 18, 2008

WE WILL HAVE WON

One of the issues I worked on while I was in south Florida was the relationship between primary care services and mental health services. I have always had a problem getting good health care as soon as the provider asked what medications I was presently taking. It seems like the list of psych meds I take deafens the medical doctors’ ears. Studies support that we die at an earlier age than folks without a mental illness and I don’t think all of it can be contributed to our bad habits which they tell me research shows we have at a higher rate than chronically normal people do. The truth is we get poorer health care than the average person in this country.
In today’s New York Times in a piece by Kevin Sack we learn about another study. “A nationwide study has found that the uninsured and those covered by Medicaid are more likely than those with private insurance to receive a diagnosis of cancer in late stages, often diminishing their chances of survival.”
When I moved here to Morganton, NC I picked a local physician who was just starting her practice. Soon after seeing her a piece appeared in the paper that she had just successfully completed the Certification Examination of The American Board of Family Medicine. I was surprised to find out that the ABFM is one of 24 member boards of the American Board of Medical Specialties and is the second largest. However, my biggest surprise was what the exam covered. It covers (but not limited to) the disciplines of the specialties of adult medicine, care of newborns, infants, children, adolescents, maternity and gynecological care, community medicine, care of the older patient, human behavior, care of the surgical patient and mental health.
When I went to see her the first time I had to take the list of the meds I was on just like all the other times I had seen a new doctor. I have kidney and heart problems. I had had surgery to repair an abdominal aortic aneurysm in March 2007 which involves removing the damaged section of the aorta and replacing it with a synthetic tube (graft), which is sewn into place. This procedure requires open-abdominal surgery involving a large incision and a lengthy recover time. An aortic aneurysm is a weakened and bulging area in the aorta, the major blood vessel that feeds blood to the body. The aorta, about the thickness of a garden hose, runs through the center of your body. Because the aorta is the body's predominant supplier of blood, a ruptured aortic aneurysm can cause life-threatening bleeding. I was lucky (or God was not done with me) that while doing an ultrasound of my liver the tech saw the aneurysm. My point is I am not the easiest case she ever had walk through her door either medically or personality wise, but because of her training and because of the person she is she has done an excellent job with a difficult patient. I don’t make a good patient.
What I am using all these words to say is that if I can be provided good medical care then any of us can. Just before this past Christmas I was awaken from a deep sleep with severe chest pains. I sat in my office almost hoping it was my time to go because I have been suicidal since I was sexually abused at four years old and it did not stop then. My bipolar illness has not done wonders for the suicidal thoughts either. Finally, I woke Patty and off to the hospital I went by ambulance with them popping nitro pills in my mouth. I was in the emergency room until about noon waiting on a bed. Through a mix up the cardiologist never got called, but even though my doctor does not see patients in the hospital (they have hospital doctors) she came by. She did not stand by the bed. She sat in a chair like she was visiting me. They wanted me to have a heart catheterization, but when things got so confusing I told Patty to either take me home (it was almost midnight) or I was just going to the street. I have not had the catheterization yet, but my physician is still working with me. I may be the most distrusting patient on earth, but she has not thrown me away.
I tell you this story because I want you to dream of the day when all my fellow sojourners will be treated by a physician with the same respect I am by her. She sees me as a person. The key to all of this folks is when the day comes we see ourselves as a person. When the world sees us as fully human too and not just as a diagnosis, we will have really won.
You can reach me directly at edcooper@projectdreamagain.com
{Being on this resource list does not imply their endorsement of this BLOG.}
www.mentalhealthministries.net
www.pathways2promise.org
www.mentalhealthchaplain.org
www.annafoundation.org
www.ncmentalhope.org
www.faithnet.nami.org

Thursday, February 14, 2008

HARDER ON MY FATHER

The word love has so many meanings that it has almost become meaningless. When someone tells you that they love you what are they saying? Really, you don’t know until you see how they act towards you. I can tell my wife a hundred times that I love her, but it is my actions that tell the real story. One of my two sisters said to me once, “Your love is like having money in the bank that you can’t ever withdraw when you need it.”
This blog is not about romantic love. It is about loving a person with a mental illness. It is about being a family member of a person with a mental illness and loving them while feeling helpless.
My thoughts have gone to my father many times over the past few weeks. He was raised in a family in the eastern part of Kentucky and they were poor to say the least. A home without warmth from the winter cold and the bitter realities of growing up. He never learned how to show the love he felt. Mom never got what she needed from him for her heart. He simply did not know how.
When faced with a son who had a mental illness he did not know what to do. I was the youngest of his three children and my two sisters had basically gone along with the program. Now he was faced with a problem he did not understand. A problem child. Even with all his education and being a teacher and school principal he had not faced a kid like me. He probably had, but they had most likely simply dropped out or gone away. I did not go away. I was his problem because I was his kid.
My illness was harder on my father than it was on me. My father suffered more than I did about my mental illness. I got breaks. I would get so sick I did not care. My father always cared. So did the rest of the people who loved me. So does my wife today. Sometimes still my illness is harder on my wife than me.
He died in 1989 without ever seeing me doing as well as I am now. Don’t get me wrong the road is still full of potholes. Just ask my wife, but I have put together a fairly good dozen or so years. I just hope those folks who loved me that have already gone on ahead are looking back on this day we celebrate love and saying, “The old guy is doing better.”
You can reach me directly at edcooper@projectdreamagain.com
{Being on this resource list does not imply their endorsement of this BLOG.}
www.mentalhealthministries.net
www.pathways2promise.org
www.mentalhealthchaplain.org
www.annafoundation.org
www.ncmentalhope.org
www.faithnet.nami.org

Monday, February 11, 2008

PRIVATE HELL

Reynolds Price, James B. Duke Professor of English at Duke University and a writer of fiction, poetry, memoirs, essays and plays, was honored for 50 years of teaching at Duke University with a celebration Jan. 31-Feb. 2. When Price first received the letter offering him a teaching job at Duke, it warned that the position was a three-year appointment with no chance of being extended. “That seemed a little discouraging, but I thought, ‘Well, three years is three years,’” Price said. During those three years, he wrote his first novel and was asked to stay on. “I’ve been here ever since.” A native of North Carolina and a 1955 summa cum laude graduate of Duke, Price was a Rhodes Scholar and studied in Oxford, England, with W.H. Auden and Lord David Cecil. He returned to the United States and began teaching at Duke in 1958.
In his book Roxanna Slade is the following paragraph from the viewpoint of his main character Roxanna, “Whatever you believed, whoever you were in the 1940’s where I lived, medical science had no cure for you-just the eventually exasperated faces of however many doctors you saw. Your church had very little more to offer except to say ‘Most everybody will be bad off as you before they die.” They also had a postscript ‘Don’t kill yourself. You’ll go straight to Hell”-and all that when you were sitting by the absolute instant in a private Hell you’d gladly have swapped for Satan’s worst grill.”
For anybody who has ever gone through a deep depression those words written by Reynolds have a powerful ring of truth to them. Being a person with a diagnosis of a bipolar disorder I have experienced some extreme lows when getting out of bed or off the couch was more than I could do. Back in the 60’s when my illness began to manifest itself my family was blamed for raising such an uncontrollable child. Later as I grew older the blame shifted to me and I was blamed for being a lazy and undisciplined person.
One never fully recovers from the blame and shame directed at them for an illness they did not ask for nor can they help having. I still fight to this very day to see myself as fully human and a true person in my own right.
The church I grew up in and that my parents were missionaries in was little help in this struggle for self. The sexual abuse I endured as a child further eroded any concept of self I may have had. While the meds I take help control the bipolar disorder I have, the struggle for self can not be found in a bottle of pills.
This struggle is a spiritual journey which is why it is so important that we be seen as bio-psycho-social-spiritual beings and not simply as a diagnosis. It is why it is so important that the faith communities reach out to those of us who have been burned to our very soul by the fire of rejection, dismissal and ignorance about us.
The first thing everyone needs to remember is that every disabled person is first and foremost a person. Treating them any different than that only increases their private hell. You can help lift the burdens if you are willing to walk along beside the person. Not trying to lead. Not trying to push. Simply being there. Simply saying by your presence that you think the person is precious. With time the person will begin to see themselves as precious too and their private hell will slowly melt away as snow does when spring dawns.
You can reach me directly at edcooper@projectdreamagain.com
{Being on this resource list does not imply their endorsement of this BLOG.}
www.mentalhealthministries.net
www.pathways2promise.org
www.faithnet.nami.org
www.annafoundation.org
www.ncmentalhope.org

Thursday, February 07, 2008

HOW ARE YOU SEEN?

How do others see you? Is that important to your advocacy? Is it important in your daily life?
We are finding out in the race for the presidency that folks may be casting their votes more from their gut feelings than from decisions based on beliefs about policies. In fact, how we feel about the person presenting the idea or product often influences our decisions on whether we decide to agree with it or buy it.
We may consider ourselves rational beings, but really genetics, peer pressure, and our emotions probably have more to do with our daily decision making than reason does. What does this have to do with being an advocate for persons with a mental illness? Everything.
First, it influences how you advocate. Some people see me like a bull in a china shop while others have grown to understand where I am coming from, but the truth is at times I make a very poor first impression. I have what some of my friends refer to as a “strong personality” (and they think they are being kind to use those words) and it can be abrasive if I am upset with what I consider to be an injustice. When I am upset I make a poor advocate.
Second, what you advocate for matters. Are you simply advocating your own ideas or have you been listening to the folks you are advocating for/with? In the early 90’s I was on a trip from Fort Lauderdale to Philadelphia with a group of mental health professionals to look at team style case management. In one of the meetings there I made a statement based on what I thought was the consumer perspective. One of the female mental health professionals from Philadelphia quickly pointed out that mental health consumers were not a monolithic group and that I could not speak for all of them anymore than she could speak for all women. In my defense I was not trying to, but her point was valid and still is.
You can have the most important message in the world, but if your own personality and attitude make you unbearable to be around or to listen to you will fail at getting your message across. Many times I may have been right, but I have failed in getting myself heard because I came across as too arrogant or too forcefully. People do not like to be told they are wrong, but they may be willing to listen if approached in the right way.
It doesn’t matter that I don’t feel the way others seem to view me. I don’t feel superior. I don’t think I am better than any other human on the face of this planet. I don’t believe I am always right, but if others see me that way it does not matter how I truly feel. It matters how I am seen.
Since I care deeply about the issues that impact the lives of people like me who live daily with a mental illness, I work on coming across with the proper attitude. I guess I mostly fail, but sometimes I succeed. When I do I get more accomplished for the folks and issues I care deeply about.
I believe in a consumer driven mental health system with major input from primary consumers and family members. I believe in service plans being driven by the dreams, desires and hopes of the individuals being served. The opinions of others are totally secondary including the mental health professionals working with the individuals. I am much more likely to follow a plan I designed headed toward a direction I decided than any plan that was put together where my input was only a part of the plan. I believe if the state decides it has the right to lock me up in a hospital for my own good or the good of others then when I am released it has a moral obligation to serve me by meeting all my needs till I no longer need the state. I believe that the state can not kill me by improper restraining me while I am in their custody without being charged with a crime.
The above beliefs sometimes cause me to get in trouble. I am not always meek and mild when I see these beliefs violated. However, it stands in my way of being a good advocate. It matters how you are seen. How are you seen?
You can reach me directly at edcooper@projectdreamagain.com
{Being on this resource list does not imply their endorsement of this BLOG.}
www.mentalhealthministries.net
www.pathways2promise.org
www.faithnet.nami.org
www.annafoundation.org
www.ncmentalhope.org

Monday, February 04, 2008

HOPE & TRUST

Not more than a dozen miles by foot (longer if you were traveling by motor vehicle) from the mission station I grew up on in Zimbabwe, Africa was the village of the local witch doctor. He had a major practice with people coming from miles around to consult with him about their aliments, but when one of his seven wives or thirty-three children needed medical attention he would send them to our mission hospital which was the second largest in Africa south of the equator. His belief in his own practices was not strong enough to risk the lives of the people in his family he loved.
A special issue of Psychiatric Services just came out with most of the issue dedicated to the discussion of mental illness and violence. When I finished reading about the studies and the conclusions that were drawn, I wondered if these folks would send their loved ones to these psychologists and psychiatrists or would they be like the witch doctor and hunt for another place to send the folks they loved.
The mental health consumer movement is as fragmented as any movement in history. There is the radical wing who deny the existence of a biological based brain disease with symptoms that get diagnosed as a mental illness. There is the conservative wing who agree that forced treatment including community forced treatment is OK because after all the person does not know or recognize they are ill. Then there are all the shades in between.
I have found a hard time finding a home. I believe we are bio-psycho-social-spiritual beings and that nothing is as simple as having a single influence. I don’t believe that my mental illness or anyone’s will ever be cured simply because they locate the correct gene that causes it and find a method to disarm the effects of that gene. We are much too complicated for that.
I am not welcome in the radical consumer movement because I know there are brain disorders because I have bipolar disorder. I am not welcome in the conservative consumer movement because I do not believe in forced or coerced treatment.
In the February 1, 2008 issue of Psychiatric News one article and author in the special issue of Psychiatric Services is summarized this way, “But the article by Jeffrey Swanson, Ph.D., pointed out that the accuracy of even the best such screening test is substantially below what would be considered acceptable in other areas of medicine, such as oncology.” He was speaking of being able to predict violence in a person with a mental illness which is criteria used for forced treatment.
My point is simple. Psychiatry is not Voodoo in my opinion, but neither is it one of the true hard sciences. It is still an art based on the ability to listen and truly hear what the other person is saying.
The deafness of the system and some practitioners is what makes some of us fear opening up and telling the truth when we visit our providers. Whatever stand you take, you must admit the best and most reliable information still is the information we provide the mental health professionals working with us. If we fear you for whatever reason, then your information will not as good. We may simple lie to protect ourselves or leave out important facts. You may get some truth, but not the whole picture.
The winning combination is still hope and trust. Think about what produces that and what destroys or eats away at it.
You can reach me directly at edcooper@projectdreamagain.com