HATE IS NOT A MENTAL ILLNESS by Pete Earley

I’m reposting Pete Earley’s blog with his permission.

(8-8-19) I felt compelled to interrupt my vacation and write an Op Ed for The Washington Post about President Trump’s recent comments about mental illness and mass homicides.

No, Mr. President. Hate is not a mental illness.

Pete Earley is the parent designate on the Interdepartmental Serious Mental Illness Coordinating Committee, created by Congress. He is the author of “Crazy: A Father’s Search Through America’s Mental Health Madness.”

“Mental illness and hatred pull the trigger, not the gun,” President Trump announced when he condemned shootings in El Paso and Dayton, Ohio, which together left at least 31 people dead and dozens wounded.

Mr. President, what you said about hatred rings true. But you are wrong in blaming mental illness.

As the father of an adult son with a mental illness and one of 14  nongovernment experts appointed by your administration to a panel that advises Congress about serious mental illnesses, I’d like to recount some well-established facts.

It’s easy for the public to assume that anyone who commits mass murder is mentally ill. How could he or she not be? And several shooters in recent high-profile mass killings have had a serious mental disorder.

But your implication that the 46 million American adults estimated to have a diagnosable mental illness and the 11.2 million thought to have a serious mental illness, such as schizophrenia and bipolar disorder, are dangerous and potentially mass murderers is as wrongheaded as declaring that the 329 million Americans who are white are capable of committing mass homicide. After all, being white is one of the most common traits of a mass shooter. Data from Mother Jones shows that between 1982 and 2017, 54 percent of mass shooters were white men. Research also shows that many of them struggle with a sense of entitlement attached to their white, heterosexual identity as well as economic anxiety in the post-industrial economy.

Other research, meanwhile, highlights that a very small portion of all gun-related homicides in the United States involve mass killings by people with serious mental illness. In fact, only 3 percent of violent crime can be attributed to people with serious mental illness.

As Amy Barnhorst noted in Psychology Today: “Most of the time, mass shooters aren’t driven by delusions or voices in their head. They are driven by a need to wield their power over another group. They are angry at the perceived injustices that have befallen them at the hands of others — women who wouldn’t sleep with them, fellow students who didn’t appreciate their talents, minorities enjoying rights that were once only the privilege of white men like them. It’s not an altered perception of reality that drives them; it’s entitlement, insecurity, and hatred. Maybe some of them also have depression, ADHD or anxiety, but that is not why they opened fire on a group of strangers.” This dovetails with profiles of such shooters as Dylann Roof, the then-21-year-old white supremacist who killed nine African Americans in a Charleston, S.C., church.

Mr. President, hate is not a mental illness. Nor is white nationalism, as acting White House chief of staff Mick Mulvaney suggested. It is taught. It is promulgated. The FBI describes a hate crime as a “criminal offense against a person or property motivated in whole or in part by an offender’s bias against a race, religion, disability, sexual orientation, ethnicity, gender, or gender identity.”

As forensic psychiatrists James L. Knoll and George D. Annas warn, “Gun restriction laws focusing on people with mental illness perpetuate the myth that mental illness leads to violence, as well as the misperception that gun violence and mental illness are strongly linked.” Hate is fueled by such myths.

They further noted that “laws intended to reduce gun violence that focus on a population representing less than 3 percent of all gun violence will be extremely low yield, ineffective, and wasteful of scarce resources. Perpetrators of mass shootings are unlikely to have a history of involuntary psychiatric hospitalization. Thus, databases intended to restrict access to guns and established by gun laws that broadly target people with mental illness will not capture this group of people.”

Mr. President, I am not a psychiatrist, nor am I an academic or a sociologist. I am a father, just as you are. I have witnessed how bias has and continues to make my son’s life difficult. I have seen how it encourages fear and prejudice against him and others who have an illness that they did not choose.

Conflating mental illnesses with mass shootings hurts people. It stigmatizes, marginalizes and creates bias. So please, Mr. President, just stop.

The post Hate Is Not A Mental Illness: I Respond in Washington Post Today To President Trump’s Words appeared first on Pete Earley.

I SEE CHANGE COMING by Channin Henry Williams

Growing up in a small middle-class town in Washington State, I had very little knowledge or understanding about mental illness, our criminal justice system, and the homeless or how these issues were connected. It wasn’t until I was an adult, living in the Houston area, that my eyes were opened to the larger problem. It was not until my own personal experience left me with no doubt that the American mental health care system is insufficient. I believe the inadequate and flawed mental health system plays a large part in why our loved ones end up living on the streets or living in our prisons. 

Not long ago, I ran into an old friend, Linda, who lives in a high-rise apartment in downtown Houston. We hadn’t talked in years. Because the topic of my daughter came up, Linda told me about her mornings and walking her dogs at 5:30 am.

Linda talks passionately about the homeless people she chats with. She describes a man who carries a cardboard box that is used for his bed. Many tell Linda about their loved ones but their stories are incoherent. She makes healthy muffins for them because she doesn’t know when they’ll get their next meal. It breaks her heart that she can give them walking directions to a hot meal, warm clothes, and a few other services, but nothing for their mental health needs. Many nights she watches, from her window, as the police escort a homeless person away in a police car. 

Those strangers, whom society has written off, belong to someone. What if I lose my own daughter to her mental madness? The optimism in me wants to deny that could happen, but the laws and the mental health system I have lived with remind me it’s a real possibility. Would my daughter be harmed or feared by those rushing past her? Would there be someone kind enough to smile at her and feed her a muffin? It gives a bit of comfort knowing there are more Lindas out there who value all human life. We don’t hear about them because they don’t seek recognition.

My daughter, Raven, is an amazing person whose early childhood was anything but easy. She was removed from her biological family and two foster homes, and was admitted to her first psychiatric hospital before her 4th birthday. She was then placed in my foster home. When the parental rights were terminated, I adopted her. Shortly after, I got married and she was adopted by my husband and we became a family. She brought so much joy to our lives even when things were difficult.

Raven received a bipolar diagnosis before her 4th birthday, but I didn’t believe it. We treated her behaviors as symptoms of post traumatic stress disorder, ADHD, obsessive compulsive disorder and reactive attachment disorder. She went to therapy and family sessions over the years because of the difficulty of raising a child with so many problematic behaviors. Even so, Raven was a cheerful child, who wanted to behave and make the people in her life proud of her. Her quirky personality helped her friends overlook her frequent outbursts, but the peers, who couldn’t understand her, were often unkind. When I saw small improvements in her daily life, I believed, one day, all the past abuse would be behind us. 

When Raven was 12, one single event seemed to “awaken” mental illness. Our life was suddenly spinning out of control. During the next nine months she was hospitalized eight times. She began experiencing deep depression which led to manic episodes. Her bipolar diagnosis was confirmed but later changed to schizoaffective disorder. It seemed likely that borderline personality disorder would also be added. Each time the doctors changed her medications and sent her home new symptoms appeared. She began expressing delusional thoughts and her fantasy world was mixed with what was real. When her hallucinations and obsessions became homicidal, we were advised to get her into long-term treatment. 

Then came the most perplexing Medicaid law that did nothing but add to the chaos. In my state, Medicaid wouldn’t cover long-term treatment for mental illness unless parents gave up guardianship to the state. Caseworkers who specialized in child abuse (CPS) would determine my child’s medical care. We first turned to a local post-adoption agency for support and funding. When their funding ended, and it was clear my daughter couldn’t return home, we had no choice but to give up guardianship.

CPS agreed to keep Raven in the first residential treatment center (RTC). She lived there for a year, but wasn’t getting better. CPS recommended that she go to a long-term psychiatric hospital. I was told, “Your daughter’s prognosis looks bleak.” While it was hard to hear, it was what I needed to keep me grounded. I knew that it was okay for Raven not to achieve all the dreams I had for her. I was proud of her for working hard and not hating me for sending her away. 

The state workers disregarded the recommendation of Raven’s medical team and sent her to another RTC. This was a deplorable facility that specialized in treating teen girls who’d been in trouble with the law, not psychiatric patients. The treatment of Raven and me was anything but nice. Raven lasted about 16 days before she tried to strangle herself and was sent to an acute psychiatric hospital. My husband and I hired a lawyer. Because Texas didn’t have a long-term psychiatric hospital willing to take Raven, the judge granted an intercontinental compact. In this case, Texas negotiated an agreement making it possible for Raven to receive psychiatric care in Florida. This process would take time, but the judge ordered that Raven was not to return to the RTC. CPS ignored the referral.

Raven was returned to the RTC. Despite my warnings that Raven would crack in that environment, CPS workers did nothing. Besides making my outrage clear, my legal rights to act were gone. Raven did crack about 18 days after being returned. She had a psychotic, manic episode. The RTC staffers refused to call the crisis Intervention team to have Raven assessed. They intended to press criminal charges against her and were uninterested in using the Harris County diversion program. 

This arrest added more tension as we scrambled to figure out what would happen next. Would Raven go to Florida or would she stay and face criminal charges? Within 72 hours of her arrest, CPS removed my daughter from the juvenile detention center and put her on a plane to Florida. All charges were dropped. She was 13 years old.

With a different kind of treatment and environment, my daughter improved significantly. She faced consequences if she were defiant, but the approach was different for enforcing the rules and consequences. She learned how to calm herself and learned strategic skills for communicating when she was becoming, psychotic. She learned how to express herself when the hallucinations were too loud. Through weekly therapy sessions, my husband and I learned new parenting skills to use when she returned. We were given reasonable expectations to help us set appropriate goals for her.

When Raven returned home from Florida, the transition from being institutionalized for almost two years was extremely difficult. CPS offered little support and, in many ways, made thing more difficult. At times, it looked like Raven wouldn’t survive outside the security of locked doors and 24-hour monitoring. Most of her suicidal attempts were wrapped in psychotic thinking. One day, for example, while she appeared happy, she swallowed a battery and a few trinkets. She thought, if her friend was going to kill himself, she didn’t need to live either. These kinds of thoughts and behaviors were common on her good days. 

As my husband and I began to anticipate the obstacles we’d be facing when Raven turned 18, we decided to move to our weekend cabin in the hill country at the end of Ravens 10th grade year. Raven was excited about this move. We set up new school accommodations before moving and made plans to slowly transition her medical care.

It didn’t take long for the police to know us and, for the most part, they understood the seriousness of Raven’s mental condition. One event, which happened several months before my visit with Linda, left me realizing how easy it would be to lose my daughter to her madness. 

After 5 months, when Raven’s illness seemed to be in remission, her paranoia became progressively more problematic. When I agreed to a small medication change, I didn’t know it would set off another downward spiral and lead us back to CPS. While an inpatient, Raven’s medication changes happened abruptly. Doctors added and subtracted new medications every few weeks while she was withdrawing from her previous therapeutic combination. Meanwhile, they sent her home even when I expressed my concerns. It was no surprise that, each time she was released from the hospital, she became sicker and more psychotic. I had the first doctor removed from continuing to treat Raven. He told me the therapeutic level of medication wasn’t good for her and he wouldn’t prescribe it, even though it had kept her home for almost two years. The second doctor wasn’t much better. Raven had a total of six hospitalizations in a six month period. 

Ravens biological father had contacted her on social media while her life was going relatively well. At first, she expressed no desire in knowing him, but her interest was suddenly peaked during the downward spiral. She was enrolled in the partial hospital program on the day she decided to leave our house on foot. Because she was acting strangely, I called the police. When the police assessed her, they determined she didn’t meet criteria for a commitment, but admitted she didn’t sound coherent.

I’ll never understand why the police drove Raven 15 minutes to a local restaurant so she could use the internet to contact her biological father. She wanted him to pick her up so she could live with him. She hadn’t seen him since she was three years old and CPS had terminated his rights. I was told, because she was 17, I couldn’t stop her regardless of her severe mental illness. Her biological father lived four and a half hours away. He was only thirty minutes away from getting Raven before the hospital administrator, the police in the next county, and I shut down her plans. Soon we learned she was being commanded by her hallucinations to kill my husband, me, and her pets, but she didn’t want to act. The only solution she could think of to protect us was to find a new home. She was committed back to the psychiatric hospital. My daughter could have left with anyone that day and I might have lost her forever. 

When the severity of Raven’s symptoms became more dangerous for her to live outside a secure living facility, my husband and I made it clear we could no longer bring her home. Her psychologist agreed. During another psychiatric hospital stay, the doctors finally put in a few requests for long-term hospitals to help get her medications working properly. San Antonio State Hospital did an assessment but declined treating her. Cedar Crest Hospital declined because of “aggression” so Raven was sent home. I was not yet willing to call CPS, so we decided to take another chance, hoping the meds would finally be right. 

Less than two weeks later, showing signs of being very sick, our daughter started a fire in our cabin. We were able to put the fire out quickly. When police picked her up, it was clear she needed long-term medical care. They didn’t even hint about pressing charges. Only the doctor treating her asked if we were doing to press charges, suggesting that might be the best way to get her help. He psychologist didn’t agree with the doctor. 

That evening, my husband and I went to the hospital to talk to the doctors and to check on Raven. We were shaken by the events of that day, but we weren’t angry with her. She’d been medication compliant. When I entered the hospital room, Raven was entertaining herself with peanut butter and a spoon. After we hugged, I saw that she was behaving like a 5 year old. She showed me her neat trick. She could put the spoon and peanut butter on her nose, and giggled because it wouldn’t fall off. She seemed oblivious to the events that had just taken place. The next morning, I called CPS and explained why I was unable to bring my daughter home. My heart broke.

In spite of everything, I see hope. I see more people, like Linda, who care. I see more of us telling our stories so we can make a difference. I see social support groups available online to give advice and support. I see a movement of people who are tired of fighting a system that fails us and has no accountability, and tired of finding our loved ones incarcerated or homeless. I see people educating our politicians and trying to make improvements. I see change coming. 

I’m excited to play my small part in fighting for one of the most vulnerable groups of people in our population. I share my story because it needs to be heard. 

UPDATE: Raven is back in an acute psychiatric hospital and the doctors have yanked the medication combo that keeps her from the behaviors that we can’t live with. Again, they claim the medications are not "good for her" — as if being lost in her psychosis leaves her better off. Raven is begging for ECT or brain surgery —anything to prevent her from loosing touch with reality. Anything so she can come home. This brings us full circle as we watch her decline. Her prognosis is looking dim. The meds that keep her functioning the best are being denied to her.

MENTAL HEALTH ADVOCATES PUSH REFORMS by Gary Warth

San Diego Union Tribune 8/7/19

Coalition seeks support for new laws and policies from presidential candidates

By Gary Warth

POWAY

A grassroots coalition of nationwide and local mental health advocates is asking all presidential candidates to support reforms in laws and policies that they say will make it easier for people to get treatment and for families to help their troubled loved one.

“The first thing you need to do is educate the candidates, because most people don’t understand serious mental illness,” said Poway resident Linda Mimms, a National Alliance on Mental Illness-trained advocate who helped craft a five-point platform that is being presented to candidates.

Mimms has called for reforms to mental illness laws for the past several years, arguing that parents of adults with mental problems should have more rights and courts should have more flexibility to mandate treatment.

Among the proposals in the platform are a call to create a cabinet position exclusively focused on serious mental illness and changes to laws that would ensure mental health professionals are permitted to share and receive diagnostic information with and from parents or caregivers.

Laws about mental illnesses became part of a national discussion this past week after mass shootings in Texas and Ohio. Mimms said she was encouraged when President Trump called for reforming mental health laws to better identify and even involuntarily confine people who may commit violent acts while also ensuring more patients receive early treatment.

She cringed, however, when he referred to “mentally ill monsters,” and noted that a small percent of mass shooters had been diagnosed with mental problems.

There are connections, however. A Wall Street Journal editorial this week cited studies between 2000 and 2015 that suggest a third of mass killers had untreated severe mental illness, while an FBI study found 40 percent had received a psychiatric diagnosis, and 70 percent had other mental health issues.

The platform was drafted after a monthlong online discussion among about 70 people who were not associated with any one group and were from 30 states. Mimms, who has a degree in public policy, wrote the final version that was adopted by organizer Dede Ranahan, author of “Sooner Than Tomorrow — A Mother’s Diary About Mental Illness, Family, and Everyday Life.”

Other local advocates who worked on the platform were Katherine Smith-Brooks and Bob Brooks of Carlsbad and Mary Sheldon of Poway.

The platform’s first topic calls for reclassifying serious mental illness from a behavioral condition to a neurological medical condition, which will unlock more research funding and help in insurance reimbursement, according to the advocates. It also calls for a cabinet position on serious mental illness and the inclusion of schizophrenia in a Centers for Disease Control program that collects data on risk factors of neurological conditions.

The second topic calls for reforming the Health Insurance Portability and Accountability Act, or HIPAA, which the platform writers said creates barriers that shut out parents and caregivers from the treatment of family members.

The third calls for the repeal of a rule that prohibits Medicaid payments to facilities with more than 16 hospital psychiatric beds for people ages 21-65, which the advocates argue has created a national shortage of treatment options.

The fourth platform topic calls for long-term care of people with severe mental illness, including early detection and follow-up treatments after release. The platform calls for federal incentives to states that address a full array of services and supportive housing care.

The final topic is about decriminalizing serious mental illness and includes reforms that can lead to more involuntary treatment, which Mimms said was her personal top priority.

“Serious mental illness is the only disease where the doors to treatment are shut unless a crime is committed,” the platforms reads. Specifically, it calls for redefining criteria for involuntary commitment with terms that are objective and based on scientific, medical needs.

A letter that will be sent to all candidates asks each to address the topics in their campaign appearances and debates, Mimms said. 

gary.warth@sduniontribune.com

Click here to read the article in the San Diego Union Tribune 8/7/19 about our 5 part plan for SMI.

NOTE FROM DEDE: If it takes a village to raise a child, it takes a country to help a child with SMI. This coalition is from across our country. Let's keep the momentum going. As Linda has done, contact your local media outlets and send them our plan. Unfortunately, our effort is manifesting in a time of wrenching, national grief. Fortunately, our plan is ready to go. If you'd like a copy of the plan, the cover letter, and an addendum of additional ideas, post your email address in the comments section below, or send it to me at dede@soonerthantomorrow.com. Then forward the documents to people in your sphere of influence. Thanks to everyone participating.

http://www.bit.ly/soonerthantomorrow

Yamileth Lopez holds a photo of her deceased friend Javier Amir Rodriguez at a makeshift memorial for victims in El Paso, Texas. (Mario Tama Getty Images)

HAPPY PIC

Water lillies at sunset.

Hope you have a good weekend everybody!

HAPPY PIC

Photo credit: Dede Ranahan

They’re first cousins. Do you see the resemblance?

Hope you have a good weekend everybody!

BEYOND MY UNDERSTANDING OF WHAT BEING HUMAN MEANS by CJ Hanson (PART TWO)

To my twin sister, Linda Rippee,

I just came on Facebook, after taking a nap. I could barely read through your post without tears flowing down my face like a stream from a mountain top. A stream that never ends. I didn't think I had this many tears left. I feel so helpless, with my own illnesses, that I am unable to help with a physical presence. The responsibility and the experience of actually interacting with Mark have fallen on your shoulders.

Is there such a thing as survivor's guilt without having actually lost someone? I can't describe the pain I feel any other way, so I’m at a loss. I’m at a loss at the pain and suffering he endures every day on the streets, knowing that we have no legal right to force him to live with the few of us left, nor is it even possible. Knowing that we have fought for 32 years trying to help him and make his life better, and knowing that he blames us for allowing him to live as the doctors didn't believe that he would. Knowing that the laws in this county, state, and nation are against families of loved ones who suffer from traumatic brain Injury and serious mental illness. Knowing that, no matter how hard we’ve fought every day to change minds, hearts, rules, and laws, so far we have failed. We have failed.

I have such a hard time believing that we’ve failed, but we have. It matters not that we have fought every day. Every single day for 32 years. Yes, for a while he was able to live a somewhat normal life until the mental illness set in. The doctors said it would happen eventually, but what has happened to him since? The apathy of people with the power to change policies, rules, and laws is a clear indication that, not only have our efforts failed, but the lawmakers have failed. How many potential bills have failed over and over as the lawmakers insist there is more legislation now for the seriously mentally ill than ever before. That may be true, but they keep failing. Failing the sufferers. Failing the families. Failing society. No human being should have to live without options like our brother. I am having difficulty understanding anything anymore about this travesty.

Facing my own mortality only makes me feel more like a failure. I still have in my mind that 12-year-old boy who tracked me down at a friend’s house after I had moved away from home at 18, and clung to me begging me to move back home. I still have in my mind seeing Mark that day of the accident, barbecuing at Mom and Dad's house and telling us how he wasn't going to keep that motorcycle but was putting it up for sale. I still have in my mind that he was on his way to my home, in Fairfield, that night to see me when the accident happened.

Did I fail him, Linda? Did I fail him by making the decision to let the doctors try to save him? Was I wrong to want him to live? I thought I was making the right choices while I actually had power of attorney back then. I'm not so sure, now. What are we to do now? Lawmakers and officials have tired of our continued efforts and have turned their own blind eyes away from the situation. No one, who has any power to give families back their rights, or to change the laws preventing us from helping him, cares. Not really.

I have no faith in lawmakers’ motivations anymore. Not one has proven that they care enough about the families of the seriously mentally ill to truly push through what needs to be done to make a real difference. I can't stop crying — for Mark, and how he lives and suffers; for you, being the last one in our family to be able to go out and find him; for myself, for being so helpless in my own infirm condition and disability; for Mom, who will leave this earth knowing her youngest child will most likely die on the streets; for all the ignorant and uninformed people who find such joy in blaming our family; for those in the community who do care and have tried to help Mark and us for so long; for our society; for this very world.

My despair and tears are beyond my ability to explain anymore. Beyond my understanding of what being human means.

See Linda’s story yesterday, June 26, 2019. “Rewind and Erase.”

Mark

I AM ASHLEY. I DEFINE ME by Ashley Doonan and Cathie Curtis

Cathie Curtis writes, “My daughter finally succumbed to her personal struggle with mental illness and took her life four months ago at age 26. As parents we cannot let go of our children and need to find comfort in knowing that their lives will forever matter.” Cathie shares a few of Ashley’s reflections written shortly before she passed:

I entered college severely anorexic. I wasn’t really alive. But I also was so eager to learn. In high school I loved Hemingway, Steinbeck, and Sartre. I’ve always been a high achiever.

Frequently, I wonder what I’d be achieving if I wasn’t ridden with this illness. Eventually, I overcame it. I had three research assistantships. For my MA, I received a full tuition scholarship. I was presenting at national conferences. But there were dark days. Tomorrow is the anniversary of my first sexual assault. I tried to scrub myself clean with no avail. I went to my professor’s office the next day and cried. But I had so much support. It’s a feeling that I can’t describe.

I moved halfway across the country for a doctoral degree. From day one, I was physically ill. I have never seen as many emergency rooms and hospital beds in the entirety of my life. I had a subdural hematoma. My brain was bleeding. I had severe withdrawals that compromised my health. I’ve had three spontaneous seizures. But I went above and beyond to prioritize my education.

However, my institution didn’t see it that way. They ignored the fact that every research assistant under a specific professor is problematic. I lost it all during the time that I was gaining control of my life. It’s messy and not logistical by any means.

I am here because I respect and value my co-chairs and dissertation committee. I respect and value Northwestern for my acceptance. Last night, I realized that both of my professors had already submitted letters of recommendation and I almost cried. I emailed them my sentiments. These are the things that keep me going in academia when I feel like everything is falling apart. These educators are incredible to say the least.

I value education. Perhaps I’m a bit compulsive in nature. But I am ALIVE. I look at that picture of a girl on her high school graduation day that could hardly fake a smile. Sometimes, I still do that because I know that my ambitions have not exceeded my talents and I will exhibit that explicitly.

I conquered something that almost killed me and lost everything I worked for.

But there are still sunflowers. And I still open my blinds to let the sun in. Yes, it’s degrading. But I force a smile and remember that I have always given 100%, and that helps me sleep at night.

Growth is painful. Change is painful. But nothing is as painful as staying stuck where you do not belong. I grew amidst a time when I was losing everything I worked for. And no, it is not okay.

I cried because it does things to you to always come second.

More from Ashley that her mother, Cathie, recently found on her cellphone:

I seldom use this platform anymore so it’s all the more difficult to be vulnerable, but I’ve discovered this wonderful organization called “Project I Define Me.” If you know me, you know that I’m committed to destigmatization and promoting awareness surrounding mental health. Recently, I have overcome some of the most difficult things in my life and I’m proud to be where I am today. I want to empower and inspire others to do the same. Person-first language is so important and during this ongoing journey I’ve really learned how grossly misunderstood mental health is. I am more than a label or a diagnosis — I am a daughter, friend, sister, girlfriend, and PhD student. I am Ashley, and I’m here to tell you that I define me.

Cathie and Ashley. Ashley wrote: “ Unequivocally grateful for Cathie Curtis - who gave me life not once but countless times.”

Cathie writes: “ During some of Ashley’s most difficult moments when we were apart, I would tell her to close her eyes and feel me hugging her. Now, this is what I do. Knowing someone is in heaven gives us peace, but it doesn’t lessen the incredible void of human touch.”

MY APRIL VISIT WITH TRAVIS CHRISTIAN (BB8099) by Dede Ranahan

When I woke up, I knew Sunday was not going to go well. I hadn't slept much — awake for about four hours in the middle of the night. I never do this, but I erroneously took two instead of one of my morning prescription pills. Damn! I knew this would make me drowsy — on top of little sleep.

I put on a new pair of slacks and a matching top in olive green and a brown jacket. Last month, when visiting Travis, I had to wear clothes from the prison visitor’s center because I wore blue. Blue’s not allowed. On signing in, yesterday, at Folsom State Prison, the guard said to me, “You know, you can’t come in wearing green.”

I forgot about green. I’m failing visiting prison 101. “Really? I had to change clothes last month. Green? Really?”

“Yes, really.”

Back across the parking lot to the visitor’s center. I was given a black sweatshirt and grey pants. I liked last month’s outfit better.

Finally, I checked in at the visitor’s desk inside the prison at noon. At 12:30 p.m., I approached a guard and asked, “Was Travis Christian called? I’ve been waiting for half an hour.”

“He should have been called. I’ll check.”

Ten minutes later, Travis walked into the visiting area. “I’m sorry,” I said, “this visit has gotten really mixed up. Let’s buy you a sandwich. I’ll have to leave at 1:15 p.m.” (The visitor’s center closes at 2 p.m.)

Travis gave me a big hug. “I’m good,” he said. “I feel happy. I wrote new music and a song. This morning I sang it at church and everyone really liked it.”

We caught up. Travis has the same cellie has last month. “We get along well,” he said. “Lawrence is gone most of the day. He attends a drug and alcohol class all morning. In the afternoon, he works in the kitchen for six hours. So I have my cell to myself most of the time.”

“How much does Lawrence get paid working in the kitchen?”

“He’s paid eight cents an hour.”

Eight cents an hour? This sounds ridiculous to me.

“Do you like having your cell to yourself?”

“I do. I can study for my history and computer classes. I can write my songs and music. I can work out.”

Travis put down his sandwich and turned toward me in his chair. “I want to ask you something. I’ve been thinking about this a lot.”

Hmm? What might be coming?

“Dede, are you saved? Have you accepted Jesus Christ as your Lord and Savior?”

Big question. What do I say? I have to be honest. “Travis, I believe there are many ways to pursue a spiritual life. So no, I’ve not ‘been saved.’”

I think this answer concerns Travis. He likes me. He wants me to be “saved.” We discuss other religions. That people have choices. That maybe one size does not fit all. Travis is not deterred. He asks another question.

“Dede, will you right now, right here, with me, accept Jesus Christ as your Lord and Savior?”

“Travis, I want to pursue God in my own way. I hope you understand.”

Travis doesn’t finish his sandwich. Usually he chows down. Later, his mother, Kathy, will tell me that Travis didn’t eat much last week when she visited him. “He’s on a new medication for ADHD and it affects appetite. Did he seem manic to you?”

No, Travis didn’t seem manic to me, but he seemed different. Kathy is concerned about his med change. She talked to Travis’s prison managers. She told them, “He’s never been diagnosed with ADHD. I don’t believe he has ADHD.” Travis, however, wants to take the ADHD medication. It’s out of Kathy’s hands.

I had to leave by 1:15 p.m. to get back to the visitor’s center to claim my clothes. We took a quick photo and hugged goodby. Hope next month Travis is still “good.” And still “feels happy.” Hope the new medication doesn’t complicate matters.

SUPPORT RECLASSIFICATION OF SCHIZOPHRENIA AS A NEUROLOGICAL DISORDER by SARDAA

Many, in the mental illness community, support SARDAA’s (Schizophrenia and Related Disorders Alliance of America) efforts to have schizophrenia reclassified as a neurological disorder. Read their background information and arguments. If you agree, click on the link below to submit your support of their letter. Thanks so much. Dede

May 21, 2018

Dr. Elinore McCance-Katz
Assistant Secretary for Mental Health and Substance Use
Interdepartmental Serious Mental Illness Coordinating Committee
Substance Abuse and Mental Health Services Administration
5600 Fishers Lane
Rockville, MD 20857

Dear Dr. McCance-Katz,

On behalf of the Schizophrenia and Related Disorders Alliance of America (SARDAA), we are writing to applaud the Interdepartmental Serious Mental Illness Coordinating Committee (ISMICC) on your work advancing the understanding and delivery of services to those with serious mental illness (SMI) and serious emotional disturbance (SED). In light of the scope of work outlined in your charter, we would like to submit our recommendations for the reclassification of Schizophrenia as a neurological disorder. One place to start is including schizophrenia in the implementation of the National Neurological Conditions Surveillance System with the 21st Century Cures Act (P.L. 114-255).

Founded a decade ago, the Schizophrenia and Related Disorders Alliance of America promotes improvement in lives affected by schizophrenia-related brain illnesses (mental illnesses involving psychosis). SARDAA promotes hope and recovery through support programs, education, collaboration, and advocacy. Our vision is that every person living with schizophrenia-related brain illness receives respect, appropriate treatment and an opportunity to live a meaningful and satisfying life in a compassionate community free of discrimination.

What is Schizophrenia?

According to current DSM-5 criteria, the diagnosis of Schizophrenia requires two of the following symptoms, with at least one from the first three:

• Delusions

• Hallucinations

• Disorganized speech

• Disorganized or catatonic behavior

Negative symptoms (e.g. diminished emotional expression or motivation)

Although the precise causes and mechanisms underlying schizophrenia continue to be actively researched, there is scientific consensus that the illness is a brain-based, highly heritable illness. There is also overwhelming evidence that schizophrenia is a neurodevelopmental disorder. (1,2) with disease processes commencing early in neurodevelopment and manifesting as subtle neurologic and behavioral abnormalities long before overt DSM-defined illness onset.

A landmark research study identified 108 genes associated with risk for schizophrenia, including those relating to dopamine receptors, glutamate transmission, synaptic plasticity and the immune system. (3) The prevailing hypotheses concerning the pathophysiology of schizophrenia include the dysregulation of the dopamine, glutamate and GABA neurotransmitter systems. Synaptic pruning — a critical process that refines neural circuits during neurodevelopment — is perturbed, in particular during adolescence, consistent with the typical onset of illness during this period and into young adulthood. (4,5)

Importantly, such disturbances in pruning have recently been linked to the Major Histocompatibility Complex (MHC), by far the strongest of the 108 risk gene associations in the aforementioned study. Specifically, certain variants of complement component 4 (C4) of the MHC have been found to lead to excessive pruning, (6) thereby providing a mechanistic link between genetic basis for schizophrenia and the observed neurobiological findings in the illness (for commentary, see https://www.youtube.com/watch?v=s0y4equOTLg).

Pruning anomalies are significant enough to show up as decreased grey matter volume in structural MRI studies of schizophrenia. (7) A myriad of functional MRI and electrophysiologic studies have shown disturbances in brain and cognitive functioning. (8,9) Thus, while much work remains in fully elucidating the origins and mechanisms of schizophrenia, there is consensus and overwhelming evidence of the genetic and brain basis for the illness.

What is the Personal and Public Health Impact of Schizophrenia?

Schizophrenia can be found in approximately 1.1% of the world’s population, regardless of racial, ethnic or economic background. Approximately 3.5 million people in the United States are diagnosed with schizophrenia and it is one of the leading causes of disability. Three-quarters of persons with schizophrenia develop the illness between 16 and 25 years of age, thus derailing affected individuals during this critical period in successfully reaching important educational, vocational and social milestones.

Unfortunately, the delays from the illness onset to receiving treatment is typically very long, ranging from 22 to 150 weeks, (10) with longer durations of untreated psychosis associated with poorer clinical and functional outcomes. (11,12) After the first episode, psychosis relapse rates are very high, up to 82% in the first 5 years. (13) At five years following the first episode of psychosis, only 13.7% achieve both symptom remission and adequate social functioning. (14)

The long-term consequences of this chronic illness can be devastating. Eleven percent of the homeless population have a diagnosis of schizophrenia, with higher rates in younger persons (13% for 18–30 years old; 21% for 31–40 years old), women (twice the rate of men) and the chronically homeless (18%), with slightly less than half not receiving treatment. (15) Individuals with schizophrenia are prone to premature death, with life expectancy 14.5 years shorter than the general population. (16) Sadly, 40% of this is due to suicide, (17) with 5% lifetime completed suicide rates in schizophrenia, (18) most being shortly following illness onset, with suicide attempts at 25-50%. (19,20) Whether patients receive timely, appropriate treatment has great consequences.

Treatment and other economic costs due to schizophrenia are enormous, estimated at $156 billion annually, with the largest

What is the Stigma Associated with Schizophrenia?

Patients with psychosis are frequently exposed to negative stereotypes, stigma and social exclusion associated with their diagnosis. Unfortunately, patients and their families often engage in self-stigmatization, blaming themselves for the disorder and wondering what they could have done differently to prevent the illness. Understanding schizophrenia and other psychotic illnesses as neurological disorders would help the community at large in viewing these illnesses as they do other medical illnesses such as cancer or diabetes.

To reduce stigma and increase understanding, SARDAA initiated the Hearing Voices of Support initiative. During Schizophrenia Awareness week in 2017, SARDAA spearheaded an interactive public art installation in New York City, entitled Psychosis: Changing Perceptions Through Art & Science. This exhibit, in coordination with creative agencies The Bloc Communication Partners, Cavort and Glowing Bulbs, Inc., allowed participants to step into “cones of light” where they experienced the associated symptoms of schizophrenia (lights, auditory effects, fog, etc.) while experiencing a personal story including suggestions of what is helpful.

Congressman John Culberson (R-TX) and Congresswoman Eddie Bernice Johnson (D-TX) are co-sponsoring a similar, smaller-scale installation in the first-floor foyer of the Rayburn House Building Offices June 27-29, 2018. The Capitol Hill installation aims to promote better understanding of schizophrenia among Members of Congress and congressional staffers; unfortunately, the larger obstacle of stigma for those with schizophrenia still remains. On June 28, 2018 in Rayburn 2103, SARDAA will present a Scientific Legislative Briefing presenting neurological evidence of schizophrenia and anosognosia.

Hiding in Plain Sight: Is Schizophrenia Not Already a Neurological Illness/Disease?

Some may ask — why is this even a question? Depending on the audience, it may not actually be a question. The defining feature of schizophrenia is psychosis, manifested primarily by delusions and hallucinations. Psychosis is not only associated with schizophrenia but also dementia, Parkinson’s disease, stroke, brain tumors, and the use of drugs or alcohol. With such clear associations with brain-based processes, it would seem clear that schizophrenia-related psychosis is also rooted in the brain. In the mental health treatment context, it is a no-brainer, so to speak — of course it is a brain disease! It is no more a question that it arises from disturbances in brain function than one questions whether Parkinson’s disease or epilepsy arises from the brain.

In the clinic, or even more poignantly, in a psychiatric inpatient unit or emergency room, a patient with severe auditory hallucinations or delusions is excused from any immediate responsibility or culpability for their symptoms. The symptoms are not simply a ‘behavioral problem’ — rather, any clinician with experience treating schizophrenia will recognize how a patient’s thoughts, emotions and behavior have been hijacked by a process that is beyond their control. Historically, the ‘hijacker’ may have been assumed to be the result of a demon or spirit (c.f. epilepsy which, historically, was attributed to demonic possession), or poor parenting; in the modern day, there is no question that it is a neurological process.

Stepping from the clinic and into the lab, one will find assumptions regarding the biological basis of schizophrenia even more firmly ensconced. We are well beyond what are now considered quaint notions of the ‘schizophrenogenic mother’ or psychosis as a social construction, and questions regarding the biological basis of schizophrenia have long since moved from ‘if’ to ‘how’. A plethora of genetic, post-mortem and neuroimaging studies have demonstrated clear evidence of the biological underpinnings. Perhaps one of the more simple, compelling facts that undergirds the biology argument is heritability and twin concordance: if one of an identical twin pair has schizophrenia, the other will have a 50% chance of also having schizophrenia, even if raised in a different environment. This number is comparable to that for Alzheimer’s disease and greater than that for Parkinson’s disease. (24,25,26)

If schizophrenia having a neurological basis is such an obvious given for clinicians and scientists — people that are ‘in the know’ — why does this question remain in the general public? The answer is likely to be a complex mix of factors that includes a lack of proper education of the public and historical inertia in the systems of care that cater to the schizophrenia population (e.g.psychiatry vs. neurology), as well as how this care is paid for (e.g. structure of reimbursement codes by Centers for Medicare and Medicaid Services).

Whatever the reasons for the disconnect between established clinical/scientific knowledge regarding schizophrenia and the inadequacies in the systems of care for the illness, there is utmost urgency in bridging this gap. As outlined above, for many individuals with schizophrenia it is literally a matter of life and death. We believe that re-classifying schizophrenia formally as a neurological disease will be an important first step for this urgent priority.

Why Should Schizophrenia Be Included in the National Neurological Conditions Surveillance System (NNCSS)?

We have general prevalence estimates indicating that 1.2% of all Americans – roughly 3.2 million people — have schizophrenia from the National Institute of Mental Health (NIMH). Beyond that broad approximation, we just do not know much more about this patient population. In particular, if we turn to public mental health agencies, who provide the vast majority of publicly financed inpatient hospital and community-based services for people living with schizophrenia, the lack of basic data is striking. For example, baseline demographic data on gender, average age of onset, race, religious affiliation, ethnic background and income are often completely absent. That lack of information often extends to the realm of service delivery. State mental health agencies often struggle to identify the specific type of care provided, the penetration rate for mental health and related support services in a given geographic area, the intensity of service delivery for each patient with schizophrenia and, most importantly, verifiable clinical outcomes. An amendment to the National Neurological Diseases Surveillance System could begin to help answer these baseline questions.

A comparison of schizophrenia to Alzheimer’s disease and Parkinson’s disease — two disorders that unambiguously have a neurological basis — quickly makes a compelling case for schizophrenia finding its proper diagnostic home in the neurological disorders (see Table below). All three disorders share multiple features including significant brain and cognitive deterioration, diagnostic approach, types of treatment, having a strong genetic basis, clearly speaking to the consideration of schizophrenia as a neurological disorder (interestingly, schizophrenia appears more heritable than Parkinson’s disease).

Where these disorders depart company, unfortunately, is the personal and social impact for diagnosed individuals. With a diagnosis of Alzheimer’s or Parkinson’s disease, the clinical paradigm of providing timely and appropriate care is robustly in place. With schizophrenia, a similar paradigm is far from guaranteed, especially in the longer term, with striking rates of patients being untreated, homeless and incarcerated. Thus, while schizophrenia appears to legitimately deserve consideration as a neurological disorder based on clinical and scientific grounds, the lack of recognition of this reality has sadly been associated with much suffering, debilitation and public health cost.

We believe that the inclusion of schizophrenia in the NNCSS could be an important first step towards understanding schizophrenia better, reducing stigma in the illness, and re-invigorating our orientation towards timely and appropriate treatment as well as making incarceration and homelessness unacceptable outcomes for schizophrenia. We appreciate the chance to provide our recommendations to you on this matter. We are happy to provide any additional information or comments that you may require.

Regards,

Linda Stalters, MSN, APRN (ret)
Chief Executive Officer & Founder
Schizophrenia And Related Disorders Alliance of America

Raymond Cho, M.D., M.Sc.
Chair of the Board of Directors
Schizophrenia And Related Disorders Alliance of America

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HAPPENING NOW: HAVE YOU SEEN MY SON? by Kelli Nidey

February 19, 2019: I don't usually talk about this. My oldest son, Mitch, has battled bipolar disorder for a long time, and has suffered from a head injury. He’s overcome addiction and the extremes of mania with medication and religious devotion, but a few months ago, he went off his medication.

Today, after the best week he’s had in many years — painting a beautiful picture for me, hanging out with old friends, volunteering at Helping His Hands, cleaning the house, and walking the dog — Mitch packed his bag and left while I was in another room.

He messaged that he’s headed to California because, “God wants me to save the lost there.” He’s taken off, before, and gone as far as Colorado where he was lost in a snowstorm and rescued by a good samaritan. He went to California with a homeless veteran, during a very bad time in his life. He’s always survived but I’m terrified, every time he leaves like this, I’ll get the worst kind of call or never hear from him again.

I don't know why I'm sharing now. I’ve been down this road so many times. I guess I’m tired. And I know there are other people struggling with PTSD or the neurological disorders that we label mental illness. I'm also hoping, if anyone sees him, they’ll help him get home.

I’ve rented him a hotel room in Carlyle, Illinois. I feel like I am enabling him, but right now, I don’t want him to freeze to death.

February 22, 2019: Mitch is hitchhiking and stayed at a hotel in St Charles, Illinois last night — the Sleepy Inn near highway 370. He was leaving there, this morning, to go further west. The night before, he stayed outside and I had the police check on him. He stopped at a hospital there for back pain but he didn’t stay. At the time the police talked to him, he was dressed warmly, cooperative, and spoke lucidly. They didn’t feel like they had enough to force him into the hospital. The local hospital wouldn’t help because he’d crossed state lines.

People helped him, this evening, and he’s now in Troy, Missouri. Someone fed him, and bought him socks and foot medication. I rented a room for him, in Troy, so I can sleep tonight. I feel like I’m on a roller coaster. Mostly, I’m trying to keep track of his whereabouts, and praying he stays warm.

My other son is away at college, with his girlfriend, so he’s been able to separate from the drama. I started a demanding job a few months ago. Thank God I have it or this would be even more stressful, financially.

A friend shared that her son is traveling the country in a bus he bought, and that he lived on the streets one winter. I had no idea her son was sick. We all hide and isolate.

February 25, 2019: This past weekend, in Troy, Missouri, Mitch said, “I still plan to travel west.”

He’s walking.