My Son Introduces Me To Daniel Johnston While I Struggle With Finding Serenity

(8-13-18) Taking a much needed break this week, but I wanted to share this blog with you, written more than a decade ago. Enjoy!

Praying For Serenity

When my son, Kevin, came over recently to play chess — or should I write to easily defeat me in several chess matches — he arrived carrying a DVD. The title was: The Devil and Daniel Johnston.

Johnston is a song writer, singer, and an artist who has struggled for years with a severe mental illness.

We watched it together and I was deeply moved. Johnston’s first album recorded on a tape recorder in his parent’s basement contained three haunting songs about his mental disorders.

Not everyone appreciates Johnston’s jarring and, at times, squeaky voice, including my wife, Patti, but Kevin and I found that the rawness of his vocals made the struggles that he described even more poignant. (You can visit Johnston’s webpage here.)

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Tennessee Executes Mentally Ill Inmate: Why It’s Difficult to Stop SMI Death Penalty Cases

(Andrew Nelles/The Tennessean via AP)

(8-10-18) Pleas by the National Alliance on Mental Illness national office and NAMI’s Tennessee chapter to stop the execution of a seriously mentally ill inmate failed last night. Billy Ray Irick, who was convicted in 1986 of raping and murdering a 7-year old girl during a psychotic break, was administered a lethal dose of toxic chemicals in Nashville. He was 59 and had been on death row 32 years.

NAMI had asked its members to petition Gov. Bill Haslam to commute Irick’s sentence to life in prison without parole. The governor demurred, saying his role was “not to be the 13th juror or the judge or to impose (his) personal views but to carefully review the judicial process to make sure it was full and fair.”

In a statement seeking commutation, NAMI argued that information about Irick’s mental illness was never properly considered during his trial and sentencing.

Ironically, last minute appeals to the U.S. Supreme Court to stop Irick’s death hinged, not on his mental condition (witnesses testified he had the mental acuity of a seven to nine year old) but whether the lethal drugs used to execute him were appropriate.

Arguably, his case is an example of the difficulty our justice system has in determining whether a crime was committed because of a person’s impaired thinking or because of their criminality. As I wrote earlier this week, there were repeated warning signs that Irick was both mentally ill and violent. Yet, no one intervened, even hours before the murder when he was seen muttering to himself in a half-drunk rage. Court records show Irick heard voices and was “taking instructions from the devil” before he was left alone to babysit Paula Dyer. This was after family members observed him chasing a young girl in Knoxville with a machete.

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Execution Of Mentally Ill Man Set For Thursday: NAMI Urges Members To Ask Tennessee Governor For Mercy

(8-6-18) Tennessee is scheduled to execute Billy Ray Irick in three days even though he has a long, well documented history of mental illness – a fact jurors were never told during his 1986 trial. Incorrectly, they were specifically advised that he was not mentally ill.

In addition, Irick has the mental cognitive acuity of someone who is seven to nine years old.  He is fifty-nine.

The National Alliance on Mental Illness, NAMI Tennessee and a state coalition – created specifically to oppose the killing of Tennessee inmates with severe mental illnesses – are urging the public to contact Tennessee Governor Bill Haslam at [email protected] or by calling his office at (615) 741-2001.  They are asking Haslam to commute Irick’s death sentence to life in prison without any possibly of parole. Irick has spent the last 30 years on death row. The governor’s commutation is considered his last chance.

In their letter to the governor,  NAMI CEO Mary Giliberti and NAMI Tennessee Executive Director Jeff Fladen stated:

“Powerful delusions or hallucinations characteristic of psychosis may lead a person to act in ways they never would have otherwise…”

They argue two critical points:

  1. Executing Billy Ray Irick would run contrary to constitutional restrictions on imposing capital punishment on persons with diminished capacity due to mental disabilities.
  2.  Information about Billy Ray Irick’s severe mental illness and its impact was never properly considered at his trial or his sentencing.

Tennessee Attorney General Herbert Slatery is pushing back, insisting the state has a right to “execute its moral judgment” and put Irick to death.

Irick’s crime was horrific. All death row convictions are. He raped and murdered Paula Dyer, a seven year old girl, he was babysitting.

But there are mitigating factors that should give Gov. Haslam pause.

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Facebook Community Helps Families Find Missing & Homeless Members: Often With Mental Illnesses

(8-3-18) Earlier this week I posted a blog written by a mother who had lost contact with her daughter. Bob Carolla, who many of us know from his work as a peer advocate and former senior writer in media relations at NAMI’s national office, immediately sent me a link to this Washington Post story by one of my favorite writers, Terrence McCoy, who often writes about mental illness. Bob urged me to share it with other parents who have a missing loved one. Thanks Bob. (NAMI offers advice here about what to do if someone you love is missing. If you have found a missing loved one or have advice please offer it on my Facebook page.)

She’d given up hope of finding her son with schizophrenia. Then came a call from an unknown number.

Christopher Moreland had been missing for seven years when his mother’s phone rang. (Elise Cash)

Few homeless people drift into Dolan Springs, Ariz., because there’s not much of a town to drift into. Little more than a gas station, a Family Dollar and a grocery store, it’s a splash of half-civilization in the middle of the desert, where 36 percent of residents live below the poverty line. So when Patience Matthieu, a thin woman of 31 years, saw a new homeless person in March, asking for food, she stopped and watched him. He looked just like her cousin, if that cousin had some teeth knocked out. What was he doing all the way out here?

Matthieu could tell something wasn’t right with him. He said he wanted to tend lawns, but this was a desert town. He said he was living in a tunnel, but where? So she decided to help. She brought him clothing, got him some canned food, and offered to split her earnings made from selling a few odds and ends at a swap meet. As he grew to trust her, she asked him how she could contact him, and, hesitatingly, he gave her his full name. She went home and, curious, punched it into Google: Christopher Aaron Moreland.

The results introduced Matthieu to the pained digital world of families searching for relatives, many of whom are severely mentally ill. In one more facet of life upturned by technological change, families are increasingly adopting the digital tools of 2018 to find vanished loved ones, in addition to the missing posters and federal registries of the past. They’re creating Facebook pages proclaiming their relative is missing, then sharing it. They’re crowdsourcing information. They’re trying to make posts go viral and sometimes succeeding.

The search ultimately led Matthieu to a group called Missing & Homeless, a Facebook community that, in three years, has gone from a few hundred followers to about 43,000, helping to reconnect around 45 families. The results of those reunions have been mixed. Some have been joyous — hugs and tears and an end of homelessness. Others have been wrenching. Families sometimes learn their loved ones want to stay on the streets, and, worse, their homeless relatives may not even recognize them.

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“I Miss The Young Daughter Who I Remember Before This Illness…I Cry Sometimes” – A Loving Mother’s Lament

(7-30-18) Sadly, I receive too many of these poignant emails from parents. 

Dear Pete Earley,

I’m the mother of a daughter with a mental illness.

Like many,  her diagnosis has changed over time. We have heard Schizoaffective disorder, Bipolar disorder, early on schizophrenia, and a wide variety of other possible diagnoses, different illnesses or conditions. After so many years of varied diagnoses, as parents, our focus became less on what the diagnosis was and more on how do we best help our daughter to live and function her best today.

She is now 30. We have worked with varied providers, treatment programs and living situations since her later high school years. Her story is similar to many with recognized difficulties occurring throughout her transition to adulthood. College attempts were difficult – after her previously being a bright and outgoing young person.

During her time in college, we found the National Alliance on Mental Illness for help and support. And, at most times, it has provided both. We have become involved  with our local affiliate, as board members, helping to facilitate our local support group (which includes both family and consumers because we are smaller and don’t currently have separate groups) and I have both taken and now help teach Family to Family.

I’m writing because I imagine there are many like us who struggle to find our voice lately in the void between NAMI’s structure, our own daughter’s current status, and a fear that our speaking out might make difficult our hoped for contact with our currently unheard from daughter. We fear speaking out in case she is getting help today or does one day, and would be angry that we spoke out.

I know from teaching our class and attending our support group that we are not alone in this feeling.

You see, she has not contacted us in awhile.

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Parent Advocate Tells Fed Panel That HIPAA Often Is Used To Stonewall Families

(7-25-18) Mental Health Advocate Doris A. Fuller returned to Washington D.C. recently to testify before the Federal Commission on School Safety at the Departmental of Education about the Health Insurance Portability and Accountability Act of 1996  (HIPAA) and how it often is used to “stonewall” families trying to help a loved one with a serious mental illness. There are three hot button issues, in my opinion, that often are divisive in mental health circles – HIPAA, Assisted Outpatient Treatment, and the Medicaid Institutions for Mental Diseases exclusion.

I am reprinting her testimony to encourage discussion about HIPAA on my Facebook page.

When I first met Doris, she said I was responsible for her moving to Washington D.C. She explained that after she read my book, she felt compelled to find an advocacy job here. Later, I met her daughter – who was the real reason why Doris felt so passionately about our broken system – when Natalie was in a Fairfax County Va. psychiatric ward.

Tragically, Natalie ended her own life. Doris bravely wrote about Natalie’s death for The Washington Post and also for my blog. (Her story remains one of the most read and powerful accounts that I’ve posted. I’ve included a few paragraphs from it and links at the bottom of this post. Please take time to read it.)

Written Testimony by Doris A. Fuller before the Federal Commission on School Safety 

It is a privilege to be here today as a mental health advocate and family member who has observed HIPAA’s role in mental health care delivery in a number of settings, including on a college campus.

A few years ago, I was asked to talk about mental illness and violence to the leading organization for student affairs officers on college and university campuses. Mental illness nearly always emerges by the age of 24 – in late adolescence or young adulthood – so these school officials are working daily on the front lines of mental health. In fact, because of the age that serious psychiatric disease typically starts, it is likely that no single other institutional setting in America serves so many individuals with mental health conditions as our high schools and colleges.

During my talk, I extolled the phenomenal communication, support and encouragement my daughter Natalie and I received from state university officials and health care providers when she had her first psychotic break as a college senior. Her symptoms led to a number of extreme behaviors, including painting her naked body blue from head to foot and pressing body prints all over the walls of the school’s art building. She was not a typical or easy student to serve. Yet, in significant part because of the university and its health center’s active collaboration with me in getting Natalie safely through these episodes, she ultimately returned to campus and graduated.

At the end of my talk to the group I asked if anyone from her university was in the room. Two hands rose timidly in the back.

“Thank you,” I said. “My daughter would not have succeeded without you.”

After I finished, they came up front to talk to me. By this time, I was working at the Treatment Advocacy Center and regularly hearing from families in crisis because of mental illness in their young adult children. I had learned that few students and families experience the open, collaborative approach Natalie and I did.

Why was that? I asked the officers. How could you talk to me and work with me, as a family member, when other schools around the country won’t even return parents’ calls?

They told me it was a matter of institutional policy and practice. The university was guided by the conviction that it had the authority under HIPAA, FERPA and applicable state laws to act in the best interests of its students, even if their actions required disclosing personal health information or other confidential matters to families. It was their belief that acting in the best interest of their students was their business.

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