(7-22-18) I am an organ donor, but I didn’t know that in many states you have to fill out a special form to donate your brain tissue. Guest blog submitted by Dr. Jim Hayes, President NAMI SC and a NAMI National Board member. Thank you Dr. Hayes.

BRAIN TISSUE DONATION AND SERIOUS MENTAL ILLNESS

The time to address the elephant in the room of Serious Mental Illness is NOW.

Mental health advocates are in a current state of confusion, have vastly divergent opinions and contentious attitudes about why we have so little progress in serious mental illness. Our family lives with serious mental illness every day. Rapid cycling bipolar 2 disorder affects our beloved family members. We have progress and setbacks every time the season changes, when there is prolonged rainy weather, bad winter or any form of setback.

We in NAMI want answers also.

It is so frustrating that many are compliant with meds, therapy and get great family support…but still there are bad times and they don’t have recovery. We blame the system, the providers, the insurance companies or the government because we believe Dr. Joyce Burland that we know we didn’t cause it!!

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(7-20-18) The unfortunate death of mental health champion Dr. Fred Frese III this week interrupted the series of guest blogs that I have been posting about the National Alliance on Mental Illness . Four of those blogs were written by participants in a telephone conference call  organized by a consulting group  hired by NAMI to help its board design a multi-year strategic plan. All of the bloggers asked NAMI to create a Families of Adult SMI Advisory Council.  I posted NAMI’s response Monday – a heartfelt reply  written by its newly elected NAMI President Adrienne Kennedy. This final guest post in the NAMI series has been written by Gabe Howard, a speaker, podcaster, and advocate, who has a mental illness and has written for me previously. I consider him a fair-balanced activist who, like many of us, tries to understand and appreciate different points of view.)  

A Peer’s Perspective: Who Does NAMI Represent? 

I first became aware of The National Alliance on Mental Illness (NAMI) when my desperate family discovered them in Tennessee and took the Family-to-Family class. Because of NAMI, my family was able to learn about mental illness and bipolar disorder, and receive much-needed support while I was in and out of hospitals and psychiatric offices 12 hours away in Ohio.

When I was more stable, I looked into NAMI in Ohio, where I lived, and realized they had no programming geared toward people living with mental illness. There were no support groups or classes aimed at “consumers” (what peers were called 10 years ago). This did not deter me, so I called the state NAMI affiliate, scheduled a meeting, and asked if there was any way at all I could be involved.

NAMI Ohio introduced me to NAMI Franklin County and the Executive Director asked me if I’d like to volunteer for the NAMIWalks program. All I had to do, they said, was be a cheerleader for the rights of people with mental illness – and maybe raise a little money. That year, ours was the number one walk team, raising thousands of dollars – and that made people notice me as an advocate for the first time.

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Fred and I often appeared together on national broadcasts

(7-18-18) Mental health advocate Frederick J. Frese III has died. 

He was a mentor, a tireless activist, and a good personal friend. He also had schizophrenia.

Fred and I appeared side-by-side on national television programs several times, but we were together the most, along with his loving wife, Penny, when giving speeches at mental health events. He was an incredibly engaging speaker. I remember having to follow him in California after he had spoken extemporaneously for two hours! No one in the audience had wanted him to stop. He received a standing ovation.

He talked openly and bravely about his illness early on when others were reluctant to even say the word schizophrenia, quietly demonstrating by his actions that individuals with arguably the most debilitating psychiatric disorder can live extraordinary lives.

Fred could be funny. A U.S. Marine when he became sick, he once convinced a prominent general to write him an impressive job reference letter. What no one knew was the general had penned it when the two of them were on the same mental ward being treated for delusions. He often joked that he was one of the few Americans who had proof that he was not insane. That was because he had been given a certificate saying exactly that after he was discharged from a hospital. Fred criss-crossed the country speaking. More than two thousand times.  Penny was always with him. Their’s is a true love story.

Fred died July 16 at his home in Hudson, Ohio. He was unique in many ways. Fred was an unflinching advocate for “consumers.” At the same time, he spoke openly about how essential medication was to his stability. He was leader in NAMI, later helped found the Treatment Advocacy Center and became an advocate for Assisted Outpatient Treatment,  which angered some of his peers. I remember him telling me how grateful he was that he was not left homeless and abandoned on the streets.

I will miss him terribly and will remember, most of all, his kindness. He had a huge heart. When my son, Kevin, was grappling with his illness, Fred came down into the audience after giving a speech and sat with Kevin. That fact that Fred was a renowned psychologist, had worked as a director of a state hospital for fifteen years, was happily married and was a father, gave Kevin hope.

All of us who care about persons with mental illnesses have lost a good friend.

READ TAC tribute to Fred here.  NAMI Tribute to Fred is here. 

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(7-16-18) I posted four blogs by parents last week about the National Alliance on Mental Illness, the nation’s largest grassroots mental illness organization, and serious mental illnesses. The blogs were prompted by a telephone call from a consulting group helping NAMI develop a multi-year strategy. At the parents’ request, I shared their four blogs in advance with NAMI CEO Mary Giliberti. Today’s post is a response to last  week’s blogs. I will be posting one more blog this week on this topic written by an individual with mental illness. As always, I welcome your comments on my Pete Earley official Facebook page.)

Response from NAMI’s New Board President Adrienne Kennedy

First, allow me to the opportunity to thank Pete Earley, a person I have counted as a friend and colleague since we met in 2007 and someone I acknowledge as a respected mental health advocate and author. Thanks, for the space to share my family’s experiences, along side other determined and dedicated family advocacy voices which appeared in this blog last week, along with adding my NAMI perspective that my new role in the organization affords me.

On June 30, among the 15 of my board members peers, I was elected to serve as President of the NAMI Board of Directors for 2018/2019. I am honored and humbled to be provided the opportunity to represent the hundreds of thousands of families, peers and avid supporters who comprise this important movement. 

I have carefully read the blogs posted last week that were largely written by members of the National Shattering Silence Coalition (NSSC). I found each of them passionate and moving. Repeatedly, in each of the blogs, I was struck by how similar their experiences were to those of my family,

When I found NAMI in 2005, our son and our family had logged 6 years coping with serious mental illness: five hospitalizations interspersed with a few months or, occasionally, many months of recovery in between.   We were fortunate to have had many good experiences with excellent clinical care: great engagement and great doctors. Not withstanding the first four relapses, we thought we were moving forward, gaining the necessary insight and coping skills. It appeared that our son had secured a winning formula: trust, treatment, recovery.

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7-13-18) “Mark is an innovative leader who deserves recognition for his excellent work on the decriminalization of people with serious mental illness.” That’s how the National Alliance on Mental Illness described Mark Gale at NAMI’s 2017 national convention when he was presented with the Sam Cochran Criminal Justice Award. It was created to recognize “outstanding work in the criminal justice system to deal fairly and humanely with people living with mental illness.”

This blog is the final written by participants in a telephone call that was held by a consulting group helping NAMI develop a multi-year strategic plan. I first met Mark while researching my book, CRAZY: A Father’s Search Through America’s Mental Health Madness, when a mutual friend introduced us. We both had sons who’d been arrested because of their mental illnesses. Like the great father that he is, Mark jumped into NAMI with both feet and today he remains  a tour de force in his home state of California. (Read more about him at the end of his open letter to NAMI. 

A Personal Note to NAMI by Mark Gale

Dear NAMI,

Sixteen years ago, when crisis was an almost daily occurrence and we were alone with no one to help guide us, we met very special members of our organization who were brilliant people and passionate about helping our family. We also found support groups to help us heal and Family-to-Family classes to educate us. I have served as a Board member both at the local and state levels and continue my work today as the Criminal Justice Chair of the NAMI Los Angeles County Council. 

NAMI you are my brand and I am dedicated to our work, which is precisely why I feel compelled to share some thoughts with you.

At last year’s Convention, even though I had walked the Hill, advocated strongly, and was nationally honored by NAMI, which was an incredible moment for me, I returned home feeling troubled.

There was a divisiveness amongst us that was apparent and I believe damaging to the organization that I love.

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(7-12-18) This is the third blog about a telephone call conducted by a strategic consulting group hired by the National Alliance on Mental Illness that was held with parents of individuals with serious mental illnesses. A majority of the individuals on that call were members of the National Shattering Silence Coalition. As always, I welcome your opinion about this issue on my Facebook page. ) 

Dear NAMI Leaders – An Plea For Help For Families With Seriously Mentally Ill Loved Ones by Jeanne Gore

“I See An epidemic, an apartheid of the SMI – It Outrages Me!”

I have been struggling to save my son’s life for 16 years now.

My son suffers from (yes, “suffers” – the word NAMI no longer wants us to use in conversation) schizoaffective disorder and has been jailed twice, beaten by seven police officers in Burlington, Vt, missing, homeless, and hospitalized 43 times, all because he didn’t know he was sick and, most of his hospitalizations were not long enough to stabilize his condition. 

Everyday I read horrific, heart-wrenching stories from family members all across the country. This is why I became active in NSSC. Let me explain what we are doing and why we wish NAMI would follow our lead.

This week National Shattering Silence Coalition wrote a letter on behalf of Kristopher Rodriguez, who is in a jail in Florida where he has been for the last 10 years. He has been forced to eat his own feces. His mother, even though she has medical power of attorney and guardianship of her son, has not been able to access his records or visit him. She is told he is no longer receiving his life-sustaining medication.

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