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What I’d do differently!

Since the publication of my book, CRAZY: A Father’s Search Through America’s Mental Health Madness, I have been fortunate enough to speak in 45 states (Yes, I still am waiting for invitations from groups in Oklahoma, Nevada, Mississippi, Alaska and Hawaii, hint, hint) and I have toured dozens of successful treatment programs. Sometimes readers ask me what I would do differently if I were given a chance to rewrite my book. It is an interesting question because I have learned so much and met so many fascinating people during the past several years.

The first thing I would do is change the title.

My editor and I thought that CRAZY was catchy and since we were referring to our mental health system, I didn’t think it was stigmatizing. But I was wrong and the cover jacket with a young man on his knees gives the impression that I am talking about my son rather than our broken mental health system. For the record, I always intended for the title word CRAZY to refer to our poor health care system, not persons such as my son. Unfortunately, many persons with mental illness didn’t understand, were offended and boycotted the book.

The next thing I would do is go through the manuscript and change the words “the mentally ill” to ”persons with mental illnesses.” When I wrote my book, I didn’t understand that I was marginalizing people by referring to them as “the mentally ill” — reducing them to an illness. I wouldn’t refer to anyone as the “heart transplant” and I believe we need to do everything we can to stop using language that categorizes people.

But the most important rewrite that I would make is the addition of about a hundred more pages about successful community-based treatment programs. It really wasn’t until after I began touring the country that I began seeing first-hand how many fabulous recovery programs are  available — programs that help persons with mental illnesses control their symptoms and empower them to take control of their lives.

I am not seeing our world through rose-colored glasses. I know severe mental illnesses are life-altering disorders and that not everyone is going to recover just like not everyone is going to beat cancer.
That’s not a popular statement to make because it is negative.
But I don’t believe in ignoring the grim reality of mental disorders.
This is why I believe we must improve our current laws and expand our services so that the most ill are not abandoned to die on our streets.
Even so, I would write more in CRAZY today about successful programs — such as jail diversion, mental health courts,  jobs, Housing First,  assertive community treatment teams, and empowerment programs.
Maybe one reason why I feel more hopeful today is because of Mike.
Whenever I give a speech, someone always asks about my son and I used to dread that question because when CRAZY was published,  Mike was having a very difficult time. He had a breakdown that ended with him getting shot by the police with a Taser. A year later, he had another break that put him in the hospital.
It is difficult to explain the desperation that a parent feels during those crisises. I was afraid for Mike and glum about his future.
I am happy to report now that Mike is doing FANTASTIC! His symptoms are under control. He is working full-time, living on his own and, most of all, he is happy. Recently, he became a PEER SPECIALIST — a person with mental illness who helps other persons with mental illnesses who are struggling.
I am tremendously PROUD of him and, like any other dad,  I enjoy bragging about all that he has accomplished!
I wanted to share this information with you, because I know from meeting people at my speeches and emails from readers that not everyone is doing as well as Mike is today. That is something that always is with me. I know that as I write this, someone is suffering — often needlessly — out there. They are not getting the meaningful help they need and deserve. They are going through tough, tough times on the streets, in jails, in prisons and in homes which they share with their families.
Please know that you are not alone. We are all walking on the same path. Hang in there. Don’t give up. Don’t despair. Have hope!
And know that most persons with mental illnesses can and do get better.
UPDATE ON EARLIER BLOG
Several of you sent me emails about the two-part blog entitled Linda’s Story ( Part 1 and Part 2 ).It describes how Linda Bishop was released from a state mental hospital, didn’t receive any follow-up care and sadly died from starvation after breaking into an unoccupied farmhouse. She kept a journal that suggested she was waiting for an imaginary boyfriend to come rescue her. It was a tragic story that shows the cracks in our health care system.
This week, Linda’s sister, Joan, sent me an email with a link to a newspaper story that a reporter published after Joan sent him the blog. It is about a lawsuit that Joan has filed against the hospital. I thought the reaction of readers to the story was especially interesting. Rather than blaming the hospital for releasing Linda with no follow up, several readers were angry that the hospital was being sued. They blamed Linda’s family for “abandoning” her.
This is not an unusal reaction from persons who have never encountered our mental health system or had a family member who is psychotic and refuses treatment.
Just to clarify a few facts. Joan cared about her sister’s welfare, so much so, that after years of trying to help her, Joan actually tried to get a legal guardianship over Linda.  She was stopped by a judge. While Linda was clearly psychotic, the judge didn’t believe she needed someone taking charge of her life.
Because Linda didn’t think anything was wrong with her, she refused treatment while she was in the hospital — that was also her civil right —  and she also ordered hospital officials not to talk to Joan or other family members. This was her right under HIPPA regulations.
Again, this is something the public often doesn’t understand.
Joan did not know that Linda had been discharged from the hospital until a Christmas Card was returned. One letter writer criticizes Joan for not knowing sooner, but if you have a psychotic loved one who refuses to talk to you or meet with you, and bans doctors from acknowledging that you are even in the hospital, then how are you supposed to know when someone is discharged?
I find it sad that family members get blamed for not doing enough when there is a tragedy such as this – when our system and the person who is psychotic take steps to push them away.
anger_stockxpertcom_id917161_size011As family members we often feel as if we can’t win. If we try to intervene, we are criticized. If we don’t, we are criticized.
All of the criticism of Joan, however, really is immaterial. Linda was clearly psychotic when she left that hospital, but no one (according to what I’ve read) checked to see if she got into community treatment. That should have been done regardless of whether or not she had family members watching her.
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About the author:

About the author: Pete Earley is the bestselling author of such books as The Hot House and Crazy. When he is not spending time with his family, he tours the globe advocating for mental health reform.

Learn more about Pete.

Check Out More from the Blog

  1. Civil Rights Violated!
  2. Linda’s Story: Part One
  3. Is the Past — Prologue?

Useful Mental Health Resources

Useful Mental Health Resources

Finding the right path for treatment in the mental health community can be confusing and full of choices. Begin your research with these resources to help you choose the best way to proceed forward.

These websites are a good starting point, but are by no means the only resources. There are many local and regional support groups you can find within your community.

46 States, 3 Countries, and 4 Different Speeches

Pete Earley Speaking at an Event

Hire Pete to Speak for Your Event -- No Matter Where It Is.

Over the course of his speaking career, Pete Earley has traveled across the globe delivering a variety of well-crafted speeches for large audiences.

But these aren't just speeches -- they're messages designed to educate, advocate, and motivate.

As a bestselling author, Pete Earley has the ability to inject his speeches with a level of storytelling that will captivate your audience while at the same time enlightening them about mental illness, spies, or a number of other issues.

In 2012, Pete is offering four different presentations, let's take a look at what those are…

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  • Susan Mixxer

    Way to go MIKE!

  • spiritual_emergency

    @Pete: I know severe mental illnesses are life-altering disorders and that not everyone is going to recover just like not everyone is going to beat cancer.

    Oh, the trouble I've gotten myself into for daring to state that people can recover. And yet, there are numerous studies that demonstrate as much: Schizophrenia & Hope: http://spiritualrecoveries.blogspot.com/2007/09…

  • davealmeida

    Pete-

    Would your book have been published if you named it “The system of mental illness?” Would your book have been published if it included one hundred plus pages of successful community based treatment programs?

    Personally, I think naming the book Crazy, and the depiction on the front cover, is on target. In hindsight, it mmust be a difficult pill to swallow, and that in no way is intended to dismiss the personal impact upon you or Mike or the rest of your family.

    But, doing it the way you did, brought attention to inadequacies in our mental health “system.” Inadequacies that far outnumber the successful community based treatment programs you would have liked to have included in your book.

    Good comes from exposing the bad, not from exposing the good for the sake of making good better. At least in my opinion, that's why Crazy has resonated with so many.

  • davealmeida

    Pete-

    Would your book have been published if you named it “The system of mental illness?” Would your book have been published if it included one hundred plus pages of successful community based treatment programs?

    Personally, I think naming the book Crazy, and the depiction on the front cover, is on target. In hindsight, it mmust be a difficult pill to swallow, and that in no way is intended to dismiss the personal impact upon you or Mike or the rest of your family.

    But, doing it the way you did, brought attention to inadequacies in our mental health “system.” Inadequacies that far outnumber the successful community based treatment programs you would have liked to have included in your book.

    Good comes from exposing the bad, not from exposing the good for the sake of making good better. At least in my opinion, that's why Crazy has resonated with so many.

  • mln_04105

    I’ve just found out about you.  Thankyou so much for verbalizing what so many of us have been through with our loved ones.  It is incredibly difficult th get them the help they need when they don’t want to come to terms with their illness. I hope you keep on writing and speaking out, and giving us guidelines for this lonely journey.
    I know your son is an inspiration for all he has accomplished.  I thought all was well with my son, and decided he didn’t need his meds anymore and it’s been 4 years of turmoil.  I think it was because of all the advertisements by the pharmaseutical companies about the side effects of medications that triggered his decision to stop taking his meds which has spun his life out of control.  Keep up the good work.