DEAR SENATOR SANDERS: PLEASE RETHINK YOUR DISABILITY PLAN by Ilene Flannery Wells

Dear Senator Sanders,

This is in regard to your Disability plan, more specifically your plan to vigorously enforce the Olmstead Decision, and your support of the Medicaid IMD Exclusion. 

As you know, the Olmstead decision is a 1999 Supreme Court decision which determined that people with mental illness should be treated in the least restrictive environment possible. I completely agree with that. What you are forgetting, or ignoring, is that the Olmstead decision was not to close institutions, but rather to make sure that only those who truly needed to be in one, were. Justice Ginsberg warned us to not close institutions when she wrote the following in the decision:

"The ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk. Nor is it the ADA’s mission to drive States to move institutionalized patients into an inappropriate setting... Some individuals may need institutional care from time to time to stabilize acute psychiatric symptoms. For others, no placement outside the institution may ever be appropriate…This Court emphasizes that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings. Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it." 

The Medicaid Institutes for Mental Diseases (IMD) Exclusion, enacted in 1964 when Medicaid was created, bans federal matching Medicaid funds to cover the treatment of otherwise Medicaid eligible adults being treated in a psychiatric hospital (or any facility over 16 beds that provides 24/7 nursing care to people with a mental illness and/or addiction). If you support the IMD Exclusion, you support federally sanctioned discrimination, and a law which has already caused an extreme psychiatric bed shortage and put those “in need of close care” at great risk.

When my twin brother Paul was released from the New York State hospital system in 1998, after 20 years, many states were already off-loading patients into the community, whether or not they could handle or benefit from it, due to the financial squeeze from the IMD Exclusion. Paul was treated as if he were a fully functioning, fully recovered adult, yet he was permanently and gravely disabled and he never gained insight into his illness. Paul, our family, and members of our community were traumatized by preventable incidents that occurred after his release, due to being placed in inappropriate settings, time and time again. He needed long-term care and pushing him into inappropriate community settings was detrimental to both his physical and mental health.

The Olmstead decision specifically states that a person should be treated in a less restrictive setting when the patient is clinically ready, willing, and there are appropriate settings and supports available. The first and third criteria are often left out of the equation today, with disastrous results.  

The discriminatory Medicaid law and the improper enforcement of Olmstead have already been catastrophic to individuals, like my brother, who are in need of close care, their families, and the communities in which they live. They include re-hospitalization, re-institutionalization, homelessness, victimization, incarceration, and death. More people with a serious mental illness are institutionalized today than ever before, but they are in prison or in homeless shelters, not hospitals. This is a sad testament to the state of health care today for people with serious mental illness. 

Proper support of Olmstead would include:
· Enough acute care and long-term psychiatric beds to support the treatment needs for our current population (approx. 50 beds per 100,000 adults)
· Assessment to determine appropriate treatment setting taking into account
· Whether or not the person has Anosognosia (lack of insight), which affects their ability to participate in treatment
· Level of existing symptoms
· Ability to perform activities of daily living (ADL) and overall cognitive functioning (Schizophrenia, for example, is a cognitive disorder that also affects memory and other cognitive abilities)
· Placement into a setting with supports built around assessment
· Housing to be both scattered and congregate as appropriate for the individuals needs
· Follow up after transition with mechanism to transition back to more restrictive environment, if necessary
· Further step-down to less restrictive environment only when criteria for that level is met

I urge you to re-think what it means to enforce Olmstead and to also support the repeal of the Medicaid IMD Exclusion.

ilene’s brother Paul right before he died.

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)

PLEASE SHARE WITH THOSE IN YOUR SPHERE OF INFLUENCE by Dede Ranahan

I believe that serious mental illness (SMI) should not be a footnote to other issues, i.e., gun violence, and that it needs to be recognized and addressed as its own issue. I'm reposting the 5 part plan developed by grassroots advocates from across the country. It's not comprehensive but it's a beginning.

Before SMI becomes the victim — responsible for gun violence — and before politicians use it more and more as a scapegoat, please join us. Send copies of this plan to local, state and federal representatives. They need to be educated. They need to step up and help 10 million SMI individuals and families who fight every day for life and death services.

Post your email in the comments section below, or send it to me at dede@soonerthantomorrow.com. I'll send you the cover letter, plan, and additional ideas so you can forward them to those within your sphere of influence.

A FIVE-PART PLAN TO ADDRESS SERIOUS MENTAL ILLNESS (SMI)

FOR ALL 2020 PRESIDENTIAL CANDIDATES

PLEASE ADDRESS THESE TOPICS IN YOUR CAMPAIGN APPEARANCES AND DEBATES

1. RECLASSIFY SERIOUS MENTAL ILLNESS (SMI)) FROM A BEHAVIORAL CONDITION TO WHAT IT IS, A NEUROLOGICAL MEDICAL CONDITION WHY RECLASSIFICATION IS IMPORTANT
Reclassification will unlock more research funding and help eliminate discrimination in treatment, insurance
reimbursement, and the perception of SMI as “behavioral” condition. SMI is a human rights issue. NIMH ranks
SMI among the top 15 causes of disability worldwide with an average lifespan reduction of 28 years.
PRESIDENTIAL ACTION
* Create a cabinet position exclusively focused on SMI.
* Push for Congressional appropriations to include schizophrenia in a CDC program that collects data on the
prevalence and risk factors of neurological conditions in the US population.

2. REFORM THE HEALTH INSURANCE PORTABILITY AND ACCOUNTABILITY ACT (HIPAA)
WHY HIPAA REFORM IS IMPORTANT
Overly strict HIPAA laws make it extremely difficult for families and caregivers to partner in the treatment of their loved ones, resulting in important life-saving medical information gaps. By eliminating this barrier, family support will be strengthened, reducing the chance of relapse, homelessness, imprisonment, and death.
PRESIDENTIAL ACTION
* Work with legislators to change HIPAA law to ensure mental health professionals are legally permitted to share and receive critical diagnostic criteria and treatment information with/from parents or caregivers of SMI.

3. REPEAL MEDICAID’S INSTITUTES FOR MENTAL DISEASE EXCLUSION (IMD)
WHY IMD REPEAL IS IMPORTANT
IMD repeal will increase the availability of psychiatric inpatient beds. The IMD exclusion is not only discriminatory of those suffering from neurological brain disorders, it is also a leading cause of our national psychiatric hospital bed shortage. It prohibits Medicaid payments to states for those receiving psychiatric care in a facility with more than 16 beds who are 21-65, the age group with the most SMI.
PRESIDENTIAL ACTION
* Work with legislators to repeal the IMD exclusion.

4. PROVIDE A FULL CONTINUUM OF CARE
WHY A FULL CONTINUUM OF CARE IS IMPORTANT
A continuum of care ensures that SMI patients receive early intervention at all stages of their illnesses, longterm care when needed, and follow-up treatment (medications and therapies) when they’re released. It reduces visits to jails, ER’s and hospitals, homelessness, and morgues. A continuum of care provides life-time management.
PRESIDENTIAL ACTION
* Create federal incentives to states which are addressing a full array of inpatient, outpatient, and supportive
housing care.

5. DECRIMINALIZE SERIOUS MENTAL ILLNESS (SMI)
WHY DECRIMINALIZATION OF SMI IS IMPORTANT
People suffering from other neurological conditions like Alzheimer’s and dementia can get treatment promptly without being kicked out of their homes to wander the streets until they are arrested and put in jail or prison rather than a hospital. Serious mental illness is the only disease where the doors to treatment are shut unless a crime is committed. This is pure and simple discrimination with the disastrous results we see in our country today — homelessness, incarceration, the disintegration of families, and death.
PRESIDENTIAL ACTION
* Work with legislators to change “must be a danger to self or others” criteria.
* Work with legislators to change involuntary commitment criteria, alleviating the subjective nature of “gravely
disabled” and redefining it in objective terms based on scientific medical need for treatment. Psychosis, like a stroke, is a traumatic brain injury and needs immediate treatment for the best outcome.

PLEASE JOIN THE CONVERSATION ON MY FACEBOOK PAGE by Dede Ranahan

The following is an ongoing discussion on my personal Facebook page - Dede Moon Ranahan. If you’re on Facebook, please click on my page and join the conversation. Or enter your comments through the comment link below. Or send your comments to me in an email: dede@soonerthantomorrow.com

SMI (SERIOUS MENTAL ILLNESS) ADVOCATES AND SUPPORTERS

GOAL: This effort is short-term. To get SMI recommendations for a national SMI plan before the 2020 presidential candidates (Republican, Democrat, Independent). None of them are currently talking about SMI (not mental health, not drug addiction). SMI. The SMI community is looking for a candidate/s who will champion SMI and its concomitant issues. With adults and children impacted and their immediate families, we represent roughly 72 million people in the US.

THE ASK: That candidates talk about SMI in their campaign appearances and debates and post a national SMI plan on their campaign websites.

To encourage them, we'll be submitting a cover letter, one-page outlined/bulleted plan, references and resources to aid them in developing their plan, and if they will read that far, the full list of 18 topic areas.

RESULTS OF YOUR VOTES FOR THE TOP 5 ISSUES FOR A ONE-PAGE PLAN:
1) Reclassification of SMI as neurological brain disorders
2) IMD (Institutes for Mental Disease Exclusion)
3) HIPAA Reform (Health Insurance Portability and Accountability Act)
4) Continuum of Care
5) Decriminalization of SMI

NOW WE MUST REFINE THIS TOP 5 LIST.
PLEASE ANSWER 1 OR MORE OF THESE QUESTIONS IN A FEW SENTENCES:
1) Why is reclassification of SMI important?
2 )Why is IMD repeal important?
3) Why is HIPAA reform important?
4) Why is a Continuum of Care important?
5) Why is Decriminalization of SMI important?

1) Name one specific action a president can take to advance the reclassification of SMI.
2) Name one specific action a president can take to advance IMD repeal?
3) Name one specific action a president can take to advance HIPAA reform?
4) Name one specific action a president can take to advance a Continuum of Care?
5) Name one specific action a president can take to advance the Decriminalization of SMI.

Thanks, Dede

1. RECLASSIFICATION OF SMI
-Reclassify schizophrenia and related disorders as neurological conditions or neurobiological brain disorders. Eliminate “behavioral health” nomenclature.


2. HIPAA (Health Insurance Portability and Accountability Act)
-Reform current HIPAA laws.
-Present patient and family with a social worker to support the family unit throughout the care process including medication and psychiatric treatment.
-Require mandatory training for everyone in the medical profession about HIPAA and a required test on proven knowledge.
-Develop a federal program for the administration of a psychiatric advance directive (PAD) which includes a universal release of information and designates an agent if capacity is lost. Must include enforcement mechanisms to require mental health/illness facilities to follow the directives.

3. IMD (Medicaid’s Institutes for Mental Disease Exclusion)
-Repeal it.
-To prevent warehousing, use unscheduled check-ups on those receiving services.

4. A FULL CONTINUUM OF CARE
-Early intervention at all stages of illness.
-Provide Inpatient (IMD waivers), Outpatient (ACT, FACT, PACT, AOT, Clubhouses), Housing (full array from locked stabilization to unlocked intensive, medium intensive, peer-run PSH, Asylum).
-Require a psychiatric standard of care for various SMI diagnoses like other medical specialties. Diagnosis should be staged as cancer is.
-Provide more long-term care.
-Remove ER’s as entry for mental health hospitalization. The ER process and chaotic environment are not conducive to the well-being of SMI patients.
-Give federal assistance to states providing supportive housing.

5. DECRIMINALIZE SMI
-Eliminate solitary confinement in jails and prisons.
-Support nationwide civil mental health courts and expand criminal ones that are already established to keep SMI out of jails and prisons.
-Establish mental health courts on a federal level, and coordinate federal courts and state-run mental health facilities.
-Move crimes that SMI commit in the federal system into state courts.
-Provide a digitized system to connect county/hospital medical records to jails and prisons.
-Mandate a way for families to provide medical history to jail/prison doctors to inform treatment.
-Provide uniform psychiatric screening of the incarcerated and use standardized protocols for medication of SMI prisoners.
-Require strict limits on waiting for trial time.

A LETTER TO SHARE OR TO COPY AND PASTE by Dede Ranahan

TO ALL 2020 PRESIDENTIAL CANDIDATES:

I often hear discussions about mental health awareness, but don't hear discussions about serious mental illness (SMI). 
With SMI, (schizophrenia, schizoaffective disorder, bipolar disorder, depression, OCD), some people do not recover and cannot work or live independently. Some are so sick they don't realize they're sick (anosognosia), don't respond to treatment (if they get it), and end up incarcerated, homeless, missing, suicidal or dead.

The SMI population represents roughly 5% (10million) of the mentally ill in the US. And ten times as many people with SMI are incarcerated as are hospitalized. These individuals don't get the attention they deserve and consistently fall to the bottom of the proverbial heap.

If it "takes a village to raise a child," it takes a country to help a "child" with SMI -- parity in mental health care, IMD exclusion repeal (beds), HIPAA reform, housing, hospitalization instead of incarceration, brain disease research, supported education, and on and on. So far, our country is not stepping up. A serious mental illness system does not exist.

The presidential candidate I'll support will have the courage and insight to raise SMI issues and to create a plan to deal with them on a national scale. 

What is your plan for SMI? (Not mental health. Not drug addiction.) I would like to read about it on your website. Thank you for your prioritization of SMI issues.

If you agree, please share widely. Or copy and paste.

#seriousmentalillness #SMI #schizophrenia #schizoaffectivedisorder#bipolardisorder #depression #OCD #parityinmentalhealthcare #IMDrepeal#HIPAAreform #braindiseaseresearch #treatmentnotincarceration#soonerthantomorrow

http//www.bit.ly/soonerthantomorrow

SAMPLE SMI LETTER TO 2020 PRESIDENTIAL CANDIDATES by Dede Ranahan

5/9/19

Presidential Candidate (NAME)
Email or address

Dear 2020 Presidential Candidate (NAME):

I hear discussions about mental health awareness. I don’t hear discussions about serious mental illness (SMI). Many of us, in the SMI community, fear that most focus is given to mental health conditions where people are resilient, can recover, can go to work, and live independently. I appreciate the goal to give hope to these individuals. The story, however, is much broader.

With SMI (schizophrenia, schizo-affective disorder, bipolar disorder, clinical depression, OCD) some people do not recover, and cannot work or live independently. Some are so sick they don’t realize they’re sick (anosognosia), don’t respond to treatment (if they get it), and end up incarcerated, homeless, missing, suicidal or dead. The SMI population represents 4-5% (10 million) of the mentally ill in the United States. And ten times as many people with SMI are incarcerated as are hospitalized. For whatever reasons, these individuals don’t get the attention they deserve and consistently fall to the bottom of the proverbial heap.

My son, Patrick, was one of these individuals.

If it “takes a village to raise a child,” it takes a country to help a “child” with SMI — parity in mental health care, IMD (Institutes of Mental Disease) Exclusion repeal (beds) , HIPAA (Health Insurance Portability and Accountability Act) reform, housing, hospitalization instead of incarceration, brain disease research, supported education, and on and on.

So far, our country is not stepping up. A serious mental illness system does not exist.

The presidential candidate I’ll vote for will have the courage and insight to raise SMI issues and to create a plan/policy to deal with them on a national scale. What is your plan/policy for SMI? I want to read about it on your website.

Thank you for your prioritization of SMI issues.

Sincerely,
Dede Ranahan

www.soonerthantomorrow.com
A Safe Place to Talk About Mental Illness in Our Families
dede@soonerthantomorrow.com
Author - Sooner Than Tomorrow — A Mother’s Diary About Mental Illness, Family, and Everyday Life
(Available online at Amazon and Barnes & Noble)

ADDRESSES: See yesterday’s post for address/email information for 2020 presidential candidates.

HAPPY PIC

Our story — mine and Pat’s — is now live and available to order on Amazon. An exciting day full of mixed emotions.

See my book, Sooner Than Tomorrow - A Mother’s Diary About Mental Illness, Family, and Everyday Life on Amazon. Click here.

ADVANCE PRAISE FOR SOONER THAN TOMORROW - by Dede Ranahan (With Patrick Ranahan)

NOTE: As of late this afternoon, 4/11/19, Sooner Than Tomorrow is up on Amazon and available for ordering. I’m in tears. My heart and soul are in this book. Thank you, so much, for reading it.

Click here to link to my Amazon book page:

In a few days, Sooner Than Tomorrow will be available in paperback on Amazon. Dedicated to mothers. Perfect for Mother’s Day! Please leave a comment on Amazon on my book page. I’m counting on word of mouth to attract new readers. Thanks so much!

FROM THE BACK COVER:

I had no idea, as I was writing my diary (June 15, 2013 — June 15, 2014), that I was capturing the last year of my son’s life. Pat died, unexpectedly, on July 23, 2014, on a hospital psych ward. Suddenly, my diary morphed into a more poignant record than I’d anticipated and, after he died, I discovered Pat had been making regular posts on Facebook. I decided to add his comments to my own.

One day, you know it will be your turn. Something alters your projection. There’s a major shift and then events will be referenced as “before” or “after.” Your life as it was versus the way it is now. In Sooner Than Tomorrow, I learn — right along with the reader — what will happen next. We’re all on a journey. Thank you for going on this journey with me.

—Dede Ranahan

Dede Ranahan weaves everyday events into her poignant account of her son’s descent into psychosis. She takes readers, with her and her family, on a harrowing journey — there is no guidebook — that too many of us are forced to take. Written in diary form, with entries by both mother and son, Sooner Than Tomorrow quietly exposes our nation’s shameful failure to help those with serious mental illnesses. It chronicles a mother’s unending love for a child and a son’s struggles to be well. An important book. A loving tribute. A powerful story that tugs at the heart and leaves readers asking, “Why can’t we do better?”

—Pete Earley,
author of CRAZY: A Father’s Search
Through America’s Mental Health Madness

This book about psychiatric brain disease is poignant and painful, but, ultimately, a necessary read. In its well-constructed pages, you’ll find a mother’s diary of her wonderful son and his terrible illness. Every clinician needs a copy of this, every mental health worker, every doctor, and, certainly, every family. Sooner Than Tomorrow is as real as storytelling gets. There are no stories more honest than those of our children who live with mental illnesses. This book tells one such story beautifully.

—Laura Pogliano,
mother of Zac, Board Member, SARDAA
(Schizophrenia and Related Disorders Alliance of America)

Among the uncountable tragedies of the mental illness sub-nation, is its near-invisibility to its host society. So-called normal people live alongside neighbors—even friends—whose quiet pain, mourning, terror, and desperation would affront the nation’s conscience if it were better known. Dede Ranahan is among the heroic witnesses who are breaking that silence. Her memoir of the loss of her son — passionate, eloquent, revelatory, and unspeakably brave — brilliantly takes its place among the beacons of light and truth telling that point the way to the reclamation of our most helpless brothers and sisters, sons and daughters, mothers and fathers.

—Ron Powers,
Pulitzer Prize-winning journalist, author of
No One CaresAbout Crazy People:
The Chaos and Heartbreak of Mental Health in America

THANK YOU PETE EARLEY - BOOKS THAT CHRONICLE MENTAL ILLNESSES AND THOSE IMPACTED BY THEM

Sharing Your Stories: Books That Chronicle Mental Illnesses And Those Impacted By Them
By Pete Earley

To go directly to Pete Earley’s blog to read his full post and to see all photos. Click here.

Posted: 26 Mar 2019 05:19 AM PDT

“Pat in 1988 before our world came undone.” Author Dede Ranahan’s first book

(3-26-19) I’ll be speaking April 2nd at the National Alliance on Mental Illness Dane County 2019 Awards Banquet and Gala in Madison, Wisconsin. Please support NAMI by attending if you live in the Madison area. 

The 2019 book season is upon us. Here’s a few that have caught my eye. If you have one that you’d like to recommend, please do so on my Facebook page.

Surviving Schizophrenia, 7th Edition, by Dr. E. Fuller Torrey.

Long considered the most comprehensive and authoritative book written about schizophrenia, an updated Surviving Schizophrenia is being released today. It was groundbreaking when it was first published in the early 1980s.  Here’s how my former colleague at the Washington Post, Peter Carlson, described the book’s impact in a 2001 article that documents how this important work helped NAMI become a national organization. If you have schizophrenia, know someone who does, or want to educate yourself about this serious mental illness, this is a must read.

When Laurie Flynn walked into the office of the National Alliance for the Mentally Ill for her first day as executive director in 1984, she found a pile of mailbags, each of them stuffed with letters. It was all because of E. Fuller Torrey. 

Torrey had just published “Surviving Schizophrenia,” a guide for patients and their families. When he appeared on Phil Donahue’s TV show to promote it, he urged people seeking help to contact the alliance, which was then a fledgling organization with fewer than 50,000 members, most of them the parents of mental patients. The result was this avalanche of mail.  

“Nobody had ever said the word schizophrenia on popular television, and people came out of the woodwork seeking help,” Flynn recalls. “For many years, mothers were told they were the cause of the problem, and here comes Fuller Torrey saying, ‘Wait a minute, this isn’t the family’s fault. These are brain diseases.’ Here was a psychiatrist saying, ‘I know what you’re going through because my sister has the problem.’ It’s hard to overemphasize what a hero he was back in the early days.” 

Torrey donated the royalties of “Surviving Schizophrenia” to the alliance and he hit the hustings to organize, helping to build the group into a powerful lobbying organization with more than 220,000 members.

“Weekend after weekend,” Flynn says, “he went out to states where members were organizing chapters and he rallied the troops. Nobody did it better.”

Not everyone lands a huge publisher, which is why I want to mention several books about mental illness that don’t have a large promotional budget and often are not by professional writers. They’re simply poignant tales written from the heart.

Sooner Than Tomorrow: A Mother’s Diary About Mental Illness, Family and Everyday Life by Dede Ranahan

It’s difficult to turn a diary into a book. A writer’s tools, such as pacing, foreshadowing and character development, don’t generally fit in a non-fiction diary form. It’s an especially daunting task for a first time author.  Sooner Than Tomorrow: A Mother’s Diary About Mental Illness, Family and Everyday Life, by Dede Ranahan pulls off that delicate dance. Interwoven with her diary entries are Facebook posts written by her son, Patrick. When this NAMI advocate first started writing her diary on June 15, 2013, she did not know that she would be  chronicling Patrick’s last year. He died on July 23, 2014 in a psych ward where she thought he would be safe.

Because Ranahan wanted to tell her story in context, she includes other events in her diary beside her son’s mental illness. That was a bold move. Some may find that distracting at first, but Ranahan wanted to blend her son’s struggles with the everyday that all of us live. It ultimately gives readers a much fuller picture. You can read more on her blog/website: Sooner Than Tomorrow. 

Here’s an excerpt:

How do you react when your 25-year-old son, during what is later seen as his first acute bipolar episode, kidnaps his teenage sister, drives her to a hospital, and convinces the emergency room staff to admit her because “she’s sick and my parents aren’t taking care of her”?

How do you compute when you arrive at the hospital to rescue your daughter—who has a cold—and you find her hysterical and sitting in a hospital bed? You ask your son, who is staring straight ahead with empty eyes, “Why did you bring your sister here?” 

With logic that reflects his internal confusion, he answers,

“Because I knew I needed help…

How do you advocate when the world sees a bum, and you see the little boy you carried in your womb, nursed at your breast, laughed and played with, and knew in your heart was the world’s greatest child? And you know somewhere, trapped inside his brain, the world’s greatest child is lost and trying to be found.

–Sooner than Tomorrow by Dede Ranahan.

BIPOLAR ME by Janet Coburn

Another blogger turned first time author is Janet Coburn who uses her blog, Bipolar Me, to shine a spotlight on what it is like to have bipolar two disorder. Full disclosure, I’ve not yet read her book because I’m on a deadline writing a new novel, but I have read her blog and put her book on my summer reading list. I am always curious about how individuals with mental illnesses successfully manage their lives. Check out her blog to discover if her writing appeals to you.

After my last (and, I hope, last) major bipolar breakdown, my therapist pointed out that I had a unique opportunity: I could reclaim those parts of my life that had fallen away, or I could leave them behind.

I could choose. That idea was very powerful.

The Light in His Soul: Lessons From My Brother’s Sczhophrenia by Rebecca Schaper with Gerald Everett Jones

The Light In His Soul came out last summer and is still getting tremendous reviews. The story behind the book was first told in an award winning documentary film entitledA Sister’s Call.   It is an incredibly powerful film.

In reviewing the book, Kirkus Reviews noted: “The power of this memoir lies in the way it demystifies mental health issues by examining them from a deeply personal perspective. Individuals and families facing similar experiences will certainly find solace from it… A moving, passionate, personal narrative of trauma and healing.”   

Here is Amazon’s description:

Call Richmond, Jr. went missing. Twenty years later he showed up on a family member’s doorstep. He was homeless, broken, and suffering from paranoid schizophrenia. For the next fourteen years, his sister Rebecca took on the struggle to restore him as they faced the dark traumas and painful memories of their past. The Light in His Soul: Lessons from My Brother’s Schizophrenia is her intimate memoir of helping Call as she learns that his extraordinary gifts are helping heal her and her family. Both Call and Rebecca bring light to the dark shadows of their past.

Sadly, Call Richmond Jr., has passed but his story is forever memorialized.

BREAKDOWN: A Clinician’s Expericne in a Broken System of Emergency Psychiatry by Lynn Nanos

Author Lynn Nanos is a mobile emergency psychiatric clinician in Massachusetts who has written for this blog. See: A Street Social Worker Tells What It’s Really Like.She’s also an active member of the  National Shattering Silence Coalition that advocates for the seriously mentally ill population. Her book uses her personal experiences to tell a much broader story – how our underfunded and broken system is failing those with serious mental illness. Here’s how she explained why she feels so passionately about helping those too often forgotten.

I know there are success stories out there. But as an inpatient social worker, I was alarmed at the extremely high rate of readmission to our units. This is what motivated me to begin writing about what I see daily.

We, or at least, I can’t close my eyes at night knowing that we could, no, we must do better.

I think of a patient on my caseload who was paranoid delusional and was refusing to accept treatment because he did not believe that he was mentally ill. He refused to sign a release of confidentiality for me to communicate with his mother, even though they resided together. She knew he was there, so I just supportively listened to her concerns. I passed these on to the rest of the team, including his psychiatrist.

Shortly after his discharge, he used a knife to stab his mother to death.

When something such as this happens, you have choices. You can pretend these events don’t happen or turn away from them. Or you can roll up your sleeves and begin advocating to improve the lives of the seriously mentally ill population who are the sickest.

I’m in my tenth year as a mobile psychiatric emergency clinician. I’ve rolled up my sleeves.

MUST READS:

In addition, here are four extremely important books that you should read. I give them my highest personal rating. Each has impacted my thinking. Please check them out.

Stories From The Shadows: Reflections Of A Street Doctor by Dr. James J. O’Connell

Insane Consequences: How The Mental Health Industry Fails The Mentally Ill by D. J. Jaffe 

Committed: The Battle Over Involuntary Psychiatric Care by Drs. Dinah Miller and Annette Hanson

No One Cares About Crazy People by Ron Powers 

The post Sharing Your Stories: Books That Chronicle Mental Illnesses And Those Impacted By Them appeared first on Pete Earley.

NEED YOUR HELP. WHICH COLOR DRAWS YOU IN? by Dede Ranahan

COMING SOON! WILL BE ON AMAZON IN PAPERBACK AND EBOOK FORMATS IN TIME FOR MOTHER’S DAY.
I’LL UPDATE HERE.

I’m trying to choose the color for the cover of my book. Which color draws you in — blue, white, or gray? Thanks so much for your help. I have no objectivity about this and appreciate your feedback.

Why the carnation? The carnation is the official flower for Mother’s Day. Pat used to give me and his sisters white carnations on Mother’s Day. White carnations represent pure love. Pink carnations represent a mother’s forever love: “I will never forget you.” My book is dedicated to Pat and his sisters, and to the mothers (millions of them) who fight, every single day, for their children who live with serious mental illness.

P.S. If you receive this post twice in your email, it’s because you’re subscribed to my stories blog and to my diary blog. I try to not duplicate posts often. Thanks for subscribing to both blogs.