Friday, March 28, 2008

THANKFUL/Entry for March 28, 2008

As you can see the next blog will not come out until next Thursday because I am celebrating.
First, I am celebrating the fact that today is my 17th wedding anniversary. Patty has been and still is the best thing that ever happened in my life. I have often said in speeches and meetings across this country that the solution to the problems in the mental health systems in the different states is to find a Patty for every one of us. She is more than I ever hoped for and far more than I probably deserve, but she has chosen to stay with me and for that I am grateful. It has not been easy because it is not easy to be with someone too depressed to get off the couch or so manic they can’t stop. Or a person sexually abused so many times as a child that they find trusting another person almost impossible. I can’t count the times I have tested her love or for that matter my family’s love. If I am this bad will you still love me? How about this bad? Patty has stayed.
Second, I am celebrating a year since my surgery for an abdominal aortic aneurysm. 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. Although you may never have symptoms, finding out you have an aortic aneurysm can be more than unsettling. Each year, approximately 15,000 people die of an abdominal aortic aneurysm in the United States.
I had my surgery on March 28, 2007. Patty said it was not a very good anniversary present. The next morning she heard one of the nurses come in and say something like, “he is still alive” sounding surprised. Yes I made it and the year since I have only had to deal with a couple of minor heart problems and some kidney problems. I feel truly lucky to be alive. They found it while doing a liver scan. Well actually I don’t feel lucky. I feel like God is walking beside me.
Which brings me to my main point. When the sexual abuse started I was only four years old and I cried out for Jesus to rescue me. He did not come. It hurt like hell. When I started getting sick from my bipolar illness I asked to be healed, but it did not happen. I turned away from God and the church. I stopped preaching or even going to church. Then at Patty’s Dad’s death bed I was asked to say a prayer. The moment I said amen he passed on. I felt God in that room for the first time in my life. I had been in Sunday school since I was a baby. I began preaching on the mission field in Africa at 12 years old and was pastor of a church in Kentucky when I was 17, but I felt God for the first time on the hospice unit of the VA hospital in Asheville, NC in May 2006 when Patty’s dad died.
The odd thing is I now know he has been there all along. From the first abuse in the barn, each time I lived on the streets, every time I was locked away on a mental ward and each step I took in life. How do I know it? Because if He had not been I would not be celebrating today. You would not have been reading my blogs. Patty and I would not have had these years together.
Oh yes, He has been there each day, each hour, each minute. Now I know it. Now I feel it. Call it another of my delusions, but this one please don’t try to take away. This delusion I need. He kept me alive all these years for a reason. This is the season of His reason.
You can reach me directly at edcooper@projectdreamagain.com

Monday, March 24, 2008

HOW AM I TO TELL THE DIFFERENCE?

When I went to my first National Alliance on Mental Illness meeting in Asheville, NC in 1988 you heard mostly about folks with Schizophrenia. Then the talk turned to what I call the big three. Schizophrenia, Bipolar disorder and Major Depression. Now you hear more talk about other disorders like Dissociative disorders, Panic disorders and Anxiety disorders along with dual diagnosis meaning a mental illness and substance abuse. Post-Traumatic Stress disorder is also coming to the front of the stage. Partly because of the five year war in Iraq and because we are learning more about it.
I found this interesting article in the Sunday Charlotte Observer. “Dr. John Kelsoe has spent his career trying to identify the biological roots of bipolar disorder. In December, he announced he had discovered several gene mutations closely tied to the disease.
Then Kelsoe, a prominent psychiatric geneticist at the University of California, San Diego, did something provocative for the world of academic medical research: He began selling bipolar genetic tests straight to the public over the Internet last month for $399. ……Kelsoe, 52, acknowledges that bipolar disorder, whose sufferers experience intense mood swings, probably results from a combination of genetic factors and life experiences and that the presence of these gene variations does not at all mean that someone will, in fact, develop the disease. “
I wonder if my wife got a call from me and I was standing on the pier in Santa Monica, California (2,375 from Glen Alpine, NC) and had just put a few thousand dollars on our credit card would I test positive with Dr. Kelsoe’s home bipolar genetic test? Just a thought.
Another article in the Charlotte Observer caught my attention. It says, “Groundbreaking research suggests genes help explain why some people can recover from a traumatic event while others suffer post-traumatic stress disorder.
Though preliminary, the study provides insight into a condition expected to strike increasing numbers of veterans returning from combat in Iraq and Afghanistan, one health expert said.
Researchers found that specific variations in a stress-related gene appeared to be influenced by trauma at a young age -- in this case child abuse. That interaction strongly increased the chances for adult survivors of abuse to develop signs of PTSD.
Among adult survivors of severe child abuse, those with the specific gene variations scored more than twice as high (31) on a scale of post-traumatic stress, compared with those without the variations (13).
The worse the abuse, the stronger the risk in people with those gene variations.
The study of 900 adults is among the first to show that genes can be influenced by outside, nongenetic factors to trigger signs of PTSD. It is the largest of just two reports to show molecular evidence of a genetic influence on PTSD. …….About a quarter of a million Americans will develop PTSD at some point in their lives after being victimized or witnessing violence or other traumatic events. Rates are much higher in war veterans and people living in high-crime areas.
Symptoms can develop long after the event and usually include recurrent terrifying recollections of the trauma. Sufferers often have debilitating anxiety, irritability, insomnia and other signs of stress.”
The truth is that many of us with a serious mental illness also have been abused. Many sexually abused. Many over a long period of time by either a family member or someone close to the family. We are mostly found on the long term wards of state hospitals. Some of us are lucky enough to have pulled ourselves together enough to live in society, but just barely.
When I am struggling I don’t know which is causing me the most trouble. The sexual abuse as a child or the bipolar disorder which started manifesting itself as I grew into adulthood.
Read the symptoms of PTSD and you are looking at the same list they give for hypomania, the stage right before you break into full mania. How am I to tell the difference?
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, March 17, 2008

SAINT PATRICK'S DAY

Saint Patrick's Day (Irish: Lá ’le Pádraig or Lá Fhéile Pádraig), colloquially St. Paddy's Day or Paddy's Day, is an annual feast day which celebrates Saint Patrick (circa 385–461 AD), one of the patron saints of Ireland, and is generally celebrated on March 17. In the past, Saint Patrick's Day was celebrated only as a religious holiday. It became a public holiday in 1903, by the Bank Holiday (Ireland) Act 1903, an Act of the United Kingdom Parliament introduced by the Irish MP James O'Mara. O'Mara later introduced the law which required that pubs be closed on 18 March, a provision which was repealed only in the 1970s. The first St. Patrick's Day parade held in the Irish Free State was held in Dublin in 1931 and was reviewed by the then Minister of Defence Desmond Fitzgerald. Although secular celebrations now exist, the holiday remains a religious observance in Ireland, for both the Church of Ireland and Roman Catholic Church. The New York parade has become the largest Saint Patrick's Day parade in the world. In 2006 more than 150,000 marchers participated in it, including bands, firefighters, military and police groups, county associations, emigrant societies, and social and cultural clubs, and it was watched by close to 2 million spectators lining the streets. The parade marches up 5th Avenue in Manhattan and is always led by the U.S. 69th Infantry Regiment. New York politicians - or those running for office - are always found prominently marching in the parade.
Some Time in New York City is John Lennon's third post-Beatles album, and fifth with Yoko Ono, and was released in 1972. Primarily for its distinction as a dual "Lennon & Ono" album and being preceded by a controversial single, Some Time in New York City fared poorly critically and commercially compared to Lennon's previous two albums, John Lennon/Plastic Ono Band and Imagine. On it was a protest song The Luck of the Irish.
Which raises the question is the luck of the Irish good or bad? If we are to believe Bart D. Ehrman, the James A. Gray Distinguished Professor of Religious Studies at UNC Chapel Hill not only do the Irish have bad luck we all do and because we all suffer it proves there is not a God. In a review written for The Charlotte Observer by Rev. James C. Howell, pastor of Myers Park United Methodist Church Ehrman is quoted as writing, "I could no longer reconcile the claims of faith with the facts of life. In particular, I could no longer explain how there can be a good and all-powerful God actively involved with this world, given the state of things. ... Life is a cesspool of misery and suffering."
Ehrman seems to assume nobody ever thought of this before. He noticed the Holocaust, hungry children, Katrina -- and he concluded something titanically brilliant: God has a problem, which is God's failure to deal with suffering, so all that is left to us is to conclude God just plain isn't.”
Rev. Howell in the review comments, “I was shocked by this book, but not because Ehrman rejects God. Ehrman is a very fine scholar, and a task incumbent upon a scholar is to engage the best scholarship written on a subject. Christians have known for 2,000 years that suffering happens, and theologians have grappled with many wise, meaningful approaches to how we believe in a good God in a world where bad things happen. Ehrman seems not to have made himself aware of any of them, or he ridiculously misrepresents various ways we understand the intersection of God and suffering. None of the great theologians who have deftly explored these matters is ever mentioned.”
One of those theologians was C. S. Lewis. The Problem of Pain is a 1940 book by C. S. Lewis, in which he seeks to provide an intellectual Christian response to questions about suffering. The book is a theodicy, an attempt by one Christian layman to reconcile orthodox Christian belief in a loving and omnipotent God with the fact that people suffer, and is not intended to provide comfort to those actually suffering. Some have felt that it is useful to read it together with A Grief Observed, Lewis' reflections on his own experience of severe emotional pain.
On this St. Pat’s day I could deny God because I have a mental illness and was abused as a child and now find my health failing. However, I would have rather lived my life a free man with free will and suffered the natural course of life than have been a robot. God created humankind in His likeness not as computers or puppets. I thank Him each day for my freedom and for His grace and I serve Him of my own free will as was His plan from the beginning of time. Ehrman’s book is titled God’s Problem. God’s only problem is that His creation keeps rejecting His grace.
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

Friday, March 14, 2008

ABLE TO DREAM AGAIN

Sharon Begley writing in the March 17th issue of Newsweek wrote, “When you write about science there is no shortage of topics that incite the wrath of readers.” I may be fixing to do that with this blog, but please stay with me till the end before you dismiss me as a total nut.
She went on to write in the article , “In a bizarre finding, sham surgery of the knee, in which patients got sedation and an incision but no actual procedure, relieved the pain of osteoarthritis better than actual arthroscopy—and produced an equal improvement in joint function, scientists reported in 2002. And last month an analysis of clinical trials of a range of antidepressants found that, except in the most severe cases, placebos lifted the black cloud as well as meds did. To be sure, no study is perfect. In the antidepressant one, the placebo might not have looked as effective if it had been compared with the drug that worked best for each patient, rather than with the one that happened to be chosen for the clinical trial. (Some patients respond better to Paxil, some to Effexor or others, for reasons that remain murky.) But the fact remains that placebos are at least somewhat effective and sometimes very effective for some patients. Rather than railing against that finding or pretending it doesn't exist, what we should be doing is learning how brain activity that corresponds to the expectation of cure translates into clinical improvement. As Dan Ariely of Duke University says, "It's not that medicines are crummy, but that the placebo effect is so powerful."
The consumer movement and the recovery concept as a whole have been saying for years that expectations play a key role in the whole process. The fight for a bio-psycho-social-spiritual model or way of seeing the whole person is to get away from labels and low expectations and into the realm of hope and being able to dream again.
The medications I am on now are causing trouble with my kidneys. The ones before that my liver. Now they are trying to figure out what medication to use to control my bipolar illness. I am going from one doctor to another. There is not a team working with me. There is no such thing as a bio-psycho-social-spiritual specialist or a bio-psycho-social-spiritualist team that I am aware of anywhere. Why not?
If the whole person needs to be treated where is the team? Where can we go? I was sitting in a planning session the other night here in North Carolina and the subject of barriers to treatment came up. I said I thought stigma was a major barrier. A member of NAMI said a great deal of progress had been made in that area. My reply was that she must not have filled out a form at a doctor’s office lately and that asked what meds you were taking and listed a bunch of psych meds. I am and have been since 1989 a member of NAMI. I am proud of the work they have done, but the fact remains stigma is well and alive for all of us with a mental illness in this country and to think anything else is simply being an ostrich with your head buried in the sand.
Our only true hope in my humble opinion is when more folks buy into the concept of the bio-psycho-social-spiritual concept and recovery, hope and being able to dream again are the norms. Medications play a role, but they can’t hug you. They can’t listen to you. They can’t love you. They can’t dream with you. They can’t ……….
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, March 10, 2008

ONLY SEE THE TAIL

Although I got replies to my last blog, I did not get anyone to take a stab at answering the question about the first use of the word/words bio-psycho-social-spiritual. Nevertheless let’s try to define at least what I mean when I use it by coming up with examples.
I consider when I have a manic episode caused by my bipolar illness that I am dealing with a bio or biological phenomenon. Since I consider my bipolar disorder a brain disease, I put it in the bio category. That is not to say that the other three don’t influence or play any part in the manic episode, but the main factor is a malfunctioning body part we call the brain.
When I am depressed it is a bit more complicated. It can be bio, but it can also be mainly psychological. This is sometimes referred to as situational depression. How can I tell the difference? Certainly not by how I feel. However, if I am not so depressed that I can’t do it I can think back to see if something happened that started it. If I can’t identify a reason for it starting then I assume I am in what is commonly referred to as clinically depression which means it is caused by my biological disorder called bipolar. Now to be sure this is not an easy thing to figure out and at times I am both depressed and manic.
A social situation that those of us with a mental illness and our families are very familiar with is stigma. Another one that most of my fellow sojourners deal with is poverty. You put stigma with poverty and you have created a social crisis for the individual.
To understand spirituality does not require you to believe in a soul or God or a life after this one. Let me clearly state I do believe that we have souls which live for eternity and that God created us and all we see around us. However, to get the meaning of the fourth word you do not have to believe as I do. Spirituality does not mean a church or a certain dogma. It means we all have an inner life and much of how well we do on our individual recovery journeys depends on how we learn to deal with our inner life.
For example during a manic episode my actions are more determined by what is deep inside me than from any psychological insights or social morals. My mind is racing and I am acting faster than facts can keep up with. You might say I have to hope my guts will keep the ship on course. From deep within is my only hope.
Now I believe that deep within me is the Creator’s Spirit helping me keep this manic force on some sort of course. You may have a different belief about how you get the help you need when the world seems to over take you, but whatever the view most folks still say they feel it deep inside themselves. In their souls.
We will never get to the place that we can truly be useful to others on their recovery journey until we see them in their complex state as all humans are. We live in a complex yet fragile universe among people who are both complex and fragile. Brave and weak. How would one ever know how majestic an elephant was if they could only see the tail?
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, March 06, 2008

US OR THEMSELVES?

What do you believe Ed? I ask myself that question about a year ago as I found myself facing a serious surgery to repair an abdominal aorta aneurysm. As I listen to the political rhetoric this year, I ask myself the same question. As I read about the mental health reforms that were begun in this state (North Carolina) in 2001, again I have to ask myself what I believe.
It is important to have a solid foundation of beliefs by which you test the assertions of any idea. If you don’t have these concrete principles or beliefs then you can be blown around like tumbleweed on the desert landscape.
At a news conference this week North Carolina’s governor said, “We had our concerns about the reform of 2001. We believed that it was a privatization that went too far too quickly.” (THE NEWS & OBSERVER)
I think this is 2008 and if I had thought something was wrong in 2001 I might have started sooner saying so. The governor sounded like he has been helpless over these past years to stop the train wreck. If that is true then why would anyone agree to give his appointed head of the Department of Health and Human Services more power?
THE NEWS & OBERVER put it this way, “ Gov. Mike Easley called on state legislators Tuesday to give his administration more authority to fix the state's troubled mental health system. Though he said he was not attempting to lay blame for the problems, the governor repeatedly pointed to the General Assembly and local mental health agencies as those primarily responsible for bungling the 2001 reform plan. Easley again contended that his administration "vigorously" opposed the plan from the start -- a version of history that does not square with the written record or the statements of the bill's primary sponsor. Implemented by the Easley administration over the past six years, the reforms dismantled an established system of county-run mental health offices and sought to pay businesses to do the work. It also sought to reduce the size of the state's four psychiatric hospitals in favor of more treatment in the community. “
So what are some basic building blocks one might look for in a plan or system to ascertain if it is built on a solid foundation?
1) Is the system First-Person? One of the first things that hit me head on when I returned to North Carolina after being away for more than a decade was that primary consumers are generally included only on advisory committees or in advisory roles, but not in the real decision making process other than maybe a token position. The other thing that amazed me was that the individual plans were not really driven by the person, but everybody under the sun was asked their opinion about what the person ought to do. Looking at these two facts alone one can tell the decision making process is not First-Person or consumer driven and nor are the service plans.
2) How many independent consumer run programs are operating in the state? The answer to this question gives you some idea to what degree the power structure believes in the recovery movement. Count the number of independent drop-in centers, safe houses, crisis services and other consumer run programs and you will know if they believe in us or themselves.
It is important what you come to the table believing. My fear is that there are few people at the table here in North Carolina who truly believes in us.
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, March 03, 2008

RANDOM THOUGHTS/ MARCH 3

John Muir (April 21, 1838 – December 24, 1914) was one of the first modern preservationists. His letters, essays, and books telling of his adventures in nature, and wildlife, especially in the Sierra Nevada Mountains of California, were read by millions and are still popular today. His direct activism helped to save the Yosemite Valley and other wilderness areas. The Sierra Club, which he founded, is now one of the most important conservation organizations in the United States. His writings and philosophy strongly influenced the formation of the modern environmental movement.
John Muir once said everyone needs, “places to play in and pray in where nature may heal and cheer and give strength to body and soul alike.” I was in Eastern Kentucky last week to attend the funeral of my Aunt (mother’s side of family) and I certainly needed the healing power of God’s creation. I drove through Western North Carolina, Eastern Tennessee and Eastern Kentucky. The reason for the trip may not have been pleasant, but the trip going up was God’s finest creation of nature. Coming back to Glen Alpine, I was in snow most of the way which lends a beauty to the landscape all its own. Thank God for the beauty he has provided us to live upon.
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The cover of NEWSWEEK dated March 3, 2008 has these words, “The Hunt for an Addiction Vaccine.” In the article we find these words, “In the current jargon of the recovery movement, addiction to alcohol, drugs or nicotine is a ‘bio-psycho-social-spiritual disorder’, a phrase that seems to have been invented by the treatment industry to emphasize how complex the problem is and how much more funding it deserves.”
I have tried to find the origin of the word or its first use, but can’t. I know I used it first in 1988 in relationship to my own mental illness and at that time I had not read it anywhere else. If any of you know the beginnings of this word please let me know. I know I took bio-psycho-social and added social, but I would like to know where it was first being used.
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On the editorial page of THE CHARLOTTE OBSERVER this past Sunday there was an editorial titled RETHINKING REFORM speaking of the mental health system here in North Carolina. Most important fact in it is the fact we are spending $16.80 per capita on mental health care. The national average stated in this editorial is $91.12 per capita. You are argue about the details of reform, but one thing for sure if you don’t fund it you have made sure it will fail before it gets off the ground.
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On the front page of the same paper was a story about the deaths in our state hospitals here in North Carolina. “Most died of natural causes, but a News & Observer investigation shows that 82 of those patients died under circumstances that raise questions: homicides, suicides, accidents, inadequate treatment or mistakes.
Family members of the deceased, who have a legal right to receive complete information about how their loved ones died, often are not told the full details. State reviews, death certificates and autopsy reports confirm the death toll. Of the 82 deaths that are questionable, 20 who died were above the age of 65. A review of conditions in North Carolina's state mental hospitals by the U.S. Department of Justice in 2004 concluded that employees routinely violated patients' civil rights. The inappropriate use of physical restraints and seclusion were cited as major problems, as were inadequate mental-health treatment, unsafe building conditions and the failure to ensure the reasonable safety of patients."
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We need to know that someone cares. I guess that is why I turn to faith communities and say to them it is time to embrace us. To open your arms. To seek us out and let us know you love us and want us among you. It is time to stop sitting safely in the pew and boldly reach out your hand and heart open to those of us with broken brains and shattered souls.
You can reach me directly at edcooper@projectdreamagain.com