Month: December 2012

Days of Infamy (Guarding the Gates)

Two blogs before this one, “The Cycle Repeated (Burn It Down),” achieved more hits in the 24-hour period after publication than any blog I’ve written before. Of course, that blog was written the night following the Sandy Hook Massacre, so perhaps that is why. The follow up, “Open Letter to the President of the United States Regarding Mental Health Reform,” has been published for a week and hasn’t hit even a quarter of the hits of the previous blog.

 

I’ve been trying to figure out why because the “why” is important. It is important because I knew from December 14th onwards that we only had a small window here. Our chance to get the message out that such tragedies were caused by mental illness and could be prevented by PREVENTATIVE mental health was now, because the nation was looking for answers as it always does after a mass shooting. But despite optimism from the gun-control advocates that perhaps Sandy Hook was a “tipping point,” I knew that, even though our focus was not gun control but what motivates the pulling of the trigger, the chance to push mental health into the public consciousness would only last until the last national news truck left Newtown. I figured we had one week, to approximately the 21st or 22nd, or, to put it bluntly, when the funerals were over.

 

There are few days that will “live in infamy” anymore, to quote FDR. The 24-hour news channels, with their need to fill endless minutes of every day, do not have the luxury of letting infamy set in for awhile. Other stories were on the horizon: the possible end of the world at the winter solstice, the “fiscal cliff,” Christmas, how the retail market did during the Holidays, Syria. No, I knew that in America, days of infamy are only for individuals. December 14th is a day which will live in infamy for the families of 28 dead people.  For everyone else, there will come a time when December 14th no longer means anything to you. Does July 20th mean anything to you? January 8th? April 16th? April 20th?

 

If I wasn’t talking about mass shootings, would those dates mean anything to you? (In order, July 20th, 2012-James Holmes kills 12 inside an Aurora, Colorado movie theater; January 8th, 2011-Jared Loughner kills six people and wounds then Congresswoman Gabby Giffords; April 16th, 2007, Seung-Hui Cho kills 32 people at Virginia Tech; April 20th, 1999, Eric Harris and Dylan Klebold kill 13 at Columbine High School). If you didn’t, don’t feel bad. I had to look up the dates and even the number of dead in each case.

 

And those are just the “biggies.” There were other school shootings in the 90s and 2000s that I can’t even remember because, sadly, the death toll wasn’t as high.

 

There are only two “days of infamy” in the last one hundred years in the United States: December 7th, 1941 at Pearl Harbor, Hawaii (2,402 Americans killed) and September 11th, 2001 (2,977 killed, not including the 19 hijackers). Those are the only two days of infamy that brought immediate action from the US Government with the support of the American people. The cynic in me says, “Well, obviously double digit death tolls are not enough. Clearly, nothing is going to change until somebody with untreated severe mental illness figures out a way to kill 3,000 people in one go.” Lucky for you, there isn’t a semi-automatic rifle magazine big enough to do that. Hell, not even a tank would do that. If the entire NRA membership went off their rockers, they couldn’t even do that.

 

Except that I’m not really a cynic. But it’s getting harder. I didn’t sign the “National Sandy Hook Sympathy Card” that almost everyone I knew posted to my Facebook page. I didn’t see the point. The longer a war goes on, the harder it gets to cry for the dead, which bothers me. It really does. It really bothers me that I am incapable of shedding a tear for Adam Lanza’s victims. I am probably the one person who is ever going to admit to it, so that is something I have to own alone. I can’t feel for them. I should be able to feel for them. I am a parent and if somebody killed my children I…. there are no words to describe how I would feel.

 

…Except that somebody is killing my children.

 

Notice I did not say “something.”

 

Schizophrenia itself is like a siege army. It slowly encircles the city of your mind and then, in blitzkrieg attack, it rushes in to lay waste to your personality. It’s primary weapon of siege is thought disorder, making you belief that things that are false are true and vice versa. Like my Barbarian ancestors who sacked Rome, it will sometimes pull back for awhile, after raping and pillaging your consciousness, only to come back again, destroying the mind, the person you love, over and over again until, like Rome, the person is dead, usually through suicide but also by cop, by prison, or by the streets themselves. It’s just that unlike Rome, nobody replaces the person you have lost. No new empire rises from their ashes. They are just ashes.

 

In human history, only two things have turned back a siege: Weather (act of God) or reinforcements.

 

We cannot rely on an act of God. Why? Because God has already sent his/her/its angels. The angels are you. I’ve told you that before.

 

And you are the reinforcements.

 

I read every comment that comes to this blog and I publish all of them (save those who double or triple post because the site gives you no acknowledgement that your comment has been accepted for moderation). Although they are a minority, I am always surprised by those who are surprised by my “bitterness” and “anger.” I mean, I get it to a point. A few, I think, just don’t have the stomach for the life of “surviving schizohrenia,” to quote the title of E. Fuller Torrey’s book. This category also produces the same people who commend Susan and I for what we have done for Jani and say things like, “I don’t know how you do it,” which has a very simple answer: because we have to. Whether readers think we have a choice or not, in our mind we do not. Jani is our daughter. We brought her into this world. It is our responsibility to ensure her survival until the day we die.

 

Mental illness is ugly. It is not beautiful. There is no beauty in it. What you see as beautiful is Jani herself. You were not there to see the disease of schizophrenia and what it did to her. I did my best to relate that in my book but even my relation is ugly. I get a chuckle out of reader reviews that like the book but think I am an asshole. I laugh because of course I am an asshole. I was probably a bit of an asshole before but what the fuck do you think happens to parents who watch severe mental illness take their child? We become even bigger assholes. It’s a survival mechanism. What? You expected me to be NICE to people while I was watching schizophrenia erode my daughter in front of me? Would you be nice if your child was dying? If you would, or have been, either you are sociopathic or severely, severely repressed. Becoming an asshole and lashing out at the world when you are losing your child and from your perspective everyone around you is standing there with their thumb up their asses is a defense mechanism. It becomes the only way you can fight. It becomes the only way to resist despair. Anger motivates you to keep going. Despair motivates nothing.

 

“What about ‘hope’?” you say. Let me tell you something about hope. Hope is only a powerful weapon in Hollywood movies. In real life, despair beats hope every time, unless you are a person lucky enough to have absolute blind faith in the Creator.

 

Hope is pretty to listen to. It’s comforting to others outside the situation. But when you are in it, living it, hope doesn’t give you the energy that anger will. Because in your darkest moments, and when you have a child with severe mental illness there will be a lot of dark moments, hope will FAIL. But anger never fails. Anger will keep you going in those moments when hope fails. Only anger will keep you trying to do the impossible. Only anger will keep you going to the ends of the earth. Only anger will make you a true advocate.

 

“Advocate” is a word that is tossed around so much in our society that it has lost all meaning. Partly this is the natural etymology of the word, derived from the same origin as “advice” or the verb “advise.” Lawyers are “advocates.” So are “educational advocates.” They give advice. They advise you.

 

But for me, a true advocate is not an advocate because they make a living off their advocacy (check the president/CEO of any non-profit you care to think of). They are not the teachers and the doctors (although they can certainly be allies and in our case, they are).

 

A true advocate is an advocate because if they don’t advocate, they will die.

 

A true advocate advocates because the loss is the greatest fear they have.

 

In other words, a true advocate is a soldier.

We are fighting back against the siege of our children’s minds. We are watching the walls, ready at any moment lest the enemy cross the moat and invade the city (me). Others are in the streets, literally in hand to hand combat against the schizophrenia that has completely taken their child (not me now, but I’ve been there). And when I say “hand to hand combat,” that’s not a metaphor. I really mean it. I know mothers and fathers who get the shit beat of them by their children during psychotic rages. I mean “broken jaw” rages. Ever taken a head-butt from your child to your face? Ever had your nose smashed? Ever had your forehead turn purple from broken capillaries? Ever had your eyes swelling out of your head?

 

I haven’t either. You think Jani’s violence was bad? It was one chapter in the book for a reason. I walked away with some scratches and bruises and, sometimes, a really bad headache.

 

I have met the sweetest kids, including “Cameron” in the book who saved Jani’s life. But I have also seen his father’s face after Cameron snapped. I’ve seen little Briana, Jani’s friend from “Born Schizophrenic: Jani’s Next Chapter,” playing with Jani and her turtles, the image of childhood innocence. And I’ve also seen her mother not be able to eat solid food because she can’t get her jaw all the way open.

 

And that’s not even counting what these kids do to themselves. In a state of psychosis, they feel no pain. They can pile-drive their heads into the wall until they leave a dent. They can cut themselves. They can shove a sharp object in their own ears and perforate the eardrum. They can try to jump off the balcony or roof.

 

And it is in the attempt to stop them from hurting themselves that we parents mostly get hurt. We take their blows because better the mental illness vents upon us, the guardians of the gates, than our children.

 

Actually, statistically, the person or persons most likely to die at the hands of a violently mentally ill person are their own parents. After self-inflicted violence, the parents are the most likely targets. Nancy Lanza was Adam’s first victim. In most cases, she would have been his only victim. Kip Kinkle killed his parents first.

 

I have no doubt that the surviving families of these mass shooters would trade their lives In a heartbeat. You don’t think Sue Klebold wishes she could? She said something rather profound. She said that initially after Columbine she wished she’d never gotten pregnant with Dylan because then he would not have been alive to do what he did. But over time she came to realize that to wish that Dylan had never existed was to wish away all the good things he did, all the wonderful things about him before he turned. Dylan killed 13 people, and there is no excusing that. But he also helped many more. It’s not that they cancel each other out. They exist side by side. Dylan Klebold the boy exists side by side in Sue’s memory with Dylan Klebold the mass killer.

 

The siege of mental illness makes it hard for those on the outside to distinguish between the two. But we parents can see it. Even though Jani is not dead, there are still two Janis for me: the one before and the one now.

 

And I think that is actually what those surprised by my anger don’t understand: how can I be so angry still when Jani has come back? Jani has a future now, they think. And it is that hope for the future that turns them off, and probably turned off readers of my last blog, the open letter to President Obama, because I equated such a cute, precious little girl to a mass killer. You don’t want to see Jani as a killer. I don’t blame you. So why do I persist in making the connection between Jani, who is relatively non-violent now, and killers like Adam Lanza and James Holmes?

 

Because, like I told you, you are the reinforcements. And because of that I need you to see the connection between adorable little girl and these killers. I need you to understand that they were adorable little boys once. They would have thought they had a bright future, too. You would have had no idea of what they were capable of.

 

I get criticized by mainstream mental health advocates because they are afraid the only connection in your mind is mental illness=violence. And it makes them afraid of what you will do to them. Hence the primary divide in mainstream mental health advocacy (I don’t consider “survivor” groups to be mainstream-most are Scientology fronts), between the adult, independent, and FUNCTIONAL “consumer model” and the parent-centered “patient model” (not to be confused with the “recovery model,” which is psych-analytic based, and the “medical model,” which focuses on the biological causes of mental illness and is the accepted model by the AMA). Adults with mental illness have defriended me, fearing that my rhetoric will lead to jack-booted thugs coming to drag them away because they are mentally ill and therefore “potentially violent” (this is also the “stigma” crowd). They don’t actually say they fear jack-booted thugs but that is what they fear. Or a lynch-mob. They are afraid that your fear of violence from the mentally ill will drive you to round them up and either institutionalize them or kill them.

 

For us parents of severely mentally ill children, that is not our fear. Our fear, our only fear, is our children dying from the disease inside their heads. And we are more afraid of your inaction than we are afraid of your action. Historically, you (meaning society) hasn’t done much about mental illness. It’s not your fault. Human nature blinds us to anything that is not right in front of us. “Out of sight, out of mind,” as they say. The severely mentally ill used to be locked up in state institutions. Now they are not. Would I have sent Jani to state psychiatric hospital permanently if such an option were still available? No, but only for my own selfish reasons of wanting my child around. But de-institutionalization has left Jani at the mercy of whatever Blue Shield will pay for, whatever county services are available, and, after she turns 18, nothing at all.

 

De-institutionalization failed for two reasons: One, it took away the only places that existed to get long term stabilization. Two, it took away a place for the most severely mentally ill adults who either cannot function or are non-compliant with medication. Where once a mentally ill person who committed a petty crime might have gone to a state hospital, now they go to prison. De-institutionalization directly led to the criminalization of the mentally ill… and Virginia Tech, Tucson, Aurora, and Newtown. Society took away the only place the severely mentally ill could go to get long term help. And now we are paying for it in blood, both theirs and ours.

 

In the long run, I care about the civil rights of the mentally ill. In the long run, I want society to accept them and treat them as we treat kids with leukemia. In the long run, I want telethons and benefit concerts.

 

But in the short term, I only care about keeping Jani and kids like her alive. Giving a person in the spring of their lives the right to kill themselves is not civil rights. That is an abomination.

 

I am a soldier in a war against mental illness. I would love to have you but only if you are in this for life. I can’t have fellow soldiers who get squeamish at our proposals. I am trying to save lives. Jani has a future, you say? How do you know that? I’m not going to wait around and see what happens in eight years. I can’t. I cannot bear her outliving me. And if that fear of her suffering or dying makes me into an asshole, then so be it. I don’t need you to approve of my methods. Either join me or get the fuck out of my way. Because I am not interested in debates over word choices. I am not interested in semantics. I am not interested in intellectual masturbation. My only goal is to keep Jani and as many kids with severe mental illness alive as I can.

 

I am not interested in your fears, society. I am not afraid of what you will do. I am afraid of what you won’t do. I am afraid of your apathy.

 

Whatever your hopes for Janis future, apathy won’t lead to any of them.

 

What are my hopes for Jani?

 

I just want her alive. I just want to make sure that in 10, 20, however many years I have left, I can still hold her in my arms.

 

And I empathize with other parents who want that. Because I would also like Jani to have friends and to do that we need to keep her current and future friends alive.

 

So, yeah, if it takes my getting in your face to make that happen, I am going to get in your face. I am not going to be nice. I am not going to be inviting.

 

Because the enemy is always at the gates. All I have time for is whether you will fight.

 

If you will, great. Get out there are start pushing for assisted outpatient therapy. Support funding for “assertive community treatment,” which gets mental health care out of offices and into the lives of those suffering from severe mental illness. Support involuntary treatment as determined by a panel of psychiatrists. Support medication. Support forced medication if necessary.

 

And if you won’t or can’t….

 

….then hide yourself and pray you don’t get hit.

 

[video:

100×100]

Open Letter to the President of the United States regarding Mental Health Reform

President Barack Obama

The White House

1600 Pennsylvania Ave NW

Washington, D.C.  20500

 

 

Dear Mr. President,

 

 

My name is Michael Schofield and I am January Schofield’s father. Of course, you don’t know who January Schofield is. You won’t…. until she kills someone.

 

Writing that sentence above makes me want to vomit. It goes against every fiber of my being. My daughter is only ten years old. She loves animals. She is a fan of the band Blink-182. If you meet her after reading my opening sentences, you would think me a monster. How could I call my own child a killer?

 

There is a chance that January will one day join the list of names that includes Adam Lanza, James Holmes, Jared Loughner, Seung-Hui Cho, and Brenda Ann Spencer.

 

Why on God’s earth would I connect my precious little girl to these monsters? Because she is no more a killer than they are. It is not my daughter that might kill.

 

It is what is inside her brain.

 

January (or “Jani” as she likes to be called) has schizophrenia, a psychotic illness. Psychosis can take many forms. It can manifest as auditory and visual hallucinations.

 

Sometimes, these voices can take the form of voices the victim actually knows. I have known mothers who live in fear of their children because one of the “bad voices” in their child’s head is them.  Try to imagine having a voice filled with hate in your head. And that voice belongs to your mother. And you are desperate to silence that voice.

 

Is that why Adam Lanza shot his mother? Was it her voice that he heard in his head? Was he trying to silence her in the only way he could think of?

 

But perhaps that wasn’t the only voice.

 

Some of these voices are “command hallucinations,” meaning that they command the victim to do bad things, usually to themselves but sometimes to others. Did Adam Lanza hear a voice in his head commanding him to kill those children? Did he hear the voices of children he had never met in his head, laughing at him, telling him horrible things about himself?

 

When he was pulling the trigger, did he even see those children as they really were? Or was his mind showing him something else, something far worse than a child? Demons? Monsters?

 

People who suffer from psychotic illnesses do not see the world as we see it. They see another world, other people, overlaid upon our world, our people. When we go out in public, I must walk close behind Jani, ready to steer her away from walking right into people in front of her. She does not see them until I tell her they are there, even though they are right in front of her. She has to be reminded to see what is in our world because most of what she sees is not in our world. She looks down at the ground a lot because if she raises her eyes, they will drift up, above the heads of those around us, toward the ceiling, and fixate on something swirling high above our heads that I wish I could see but cannot. I must talk to her, not to make innocent conversation, although that is what it looks like. I have to make sure that she still sees me, still recognizes me.

 

For there was once a time when she didn’t.

 

As long as she still recognizes and engages with myself and those who love her and care for her, there is hope. But make no mistake. Every moment she is awake I am challenging a world that exists only inside her head, competing with it for her attention, and, more importantly, her soul.

 

There is no cure for schizophrenia. To manage it, Jani takes a staggering cocktail of medications that would put you or me in a coma. 350mg of clozapine (an anti-psychotic) per day. 75mg of chlorpromazine (another anti-psychotic, better known by its trade name “Thorazine”), and 750 mg of lithium carbonate (a mood stabilizer used to reduce impulsiveness). All this just so Jani can repress her violent impulses, the commands from her hallucinations, and function. And to meet her, you would never know she was on these powerful medications. She would happily run around the White House lawn, playing with Malia and Sasha. The only thing that might strike them as strange is that Jani would probably talk about “24 Hours,” or “Eighty” or “Eighteen.” She would introduce them to your daughters as her friends. And if they looked confused, she would run off by herself, perhaps into the Situation Room, or out into the Rose Garden. You would call after her but she would tell you she was playing with “Eighty,” that she and “Eighty” were having fun.

 

“Eighty,” by the way, is a hallucination, a young girl about Malia’s age. “Eighty” used to tell Jani to jump off the third floor of our apartment building with her. At least for the moment, “Eighty” is not doing that anymore.

 

I can tell you she would not hurt your daughters. You would probably find her enjoyable, a little blonde sprite. But that is only because of the anti-psychotics that she takes. Without those medications, her pre-frontal cortex will begin to erode, much as it does with Alzheimer’s. The pre-frontal cortex is who we are. I have watched my daughter’s personality erode and I have watched her struggle to come back. She can handle being in a classroom again (the classroom being “SED” or severely emotionally disturbed, the school system’s catch-all for children who cannot function in a mainstream class). For three years she could not do this and was educated in an empty classroom with a teacher and an aide. For two and half years my wife, Susan, and I maintained two separate apartments, one for Jani and one for our then infant son, Bodhi. Jani was such a threat to Bodhi’s safety that the Department of Child and Family Services told us to either send Jani to a residential facility (of which the only options were out of state) or they would take Bodhi. We refused to send our daughter away. We refused to give up on her. So we split our family apart to keep it together, something we were only able to do through the generosity of family and friends. We alternated nights. One night I was with Jani while Susan was with Bodhi and the next night we switched. We did not want Bodhi to grow up afraid of his sister and we wanted to reduce Jani’s stress level. And it worked. We now live under one roof again. Bodhi loves his sister and Jani, free from the worst of her symptoms for now, is able to love him back.

 

I still get tears in my eyes when Jani walks up to another child, a real flesh and blood child, and says, “What’s your name?” Such a simple act is a titanic accomplishment for Jani. My daughter is my hero, Mr. President.

 

But my promise that she will not hurt your daughters or anyone else only extends as far as August 8th, 2020. Because on that day Jani will turn 18 and I will have no legal ability to influence her, to help her, to save her life and, quite possibly, the lives of those around her. Everything that Jani has achieved and still might achieve could be lost. She is allowed to refuse her medication if she so chooses, because at 18, under our current mental health laws, she becomes a “consumer,” not a patient. Without medication, she could become a dirty bag lady that people will pass on the street with disdain, the woman raving to herself that makes good citizens cross to the other side of the street. She could commit a crime with no awareness that what she is doing is wrong.  Right now, she has a tendency to try and strip her clothes off if she feels any wetness. She could be arrested for that. She could be arrested for striking someone trying to help her, as she now sometimes does to us or her school staff or her behaviorists. Things that she does now that are not crimes yet will become crimes. Perhaps she will wind up in the California Department of Corrections, the largest provider of mental health services in the world.

 

With no medication to check the advance of the schizophrenia, there is no telling where what is left of her mind could lead her to do.

 

I am not asking for society to take responsibility for my child. What I am asking for the ability to continue to take care of Jani after she turns 18. Right now, I cannot legally help my child, no matter how much I may want to. I need your help, Mr. President, to change that.

 

There is a law that was passed here in California and signed by former Governor Gray Davis. It is called “Laura’s Law.” It allows for what is called “assisted outpatient therapy,” which is a fancy name for forced medication. If adults over the age of 18 with a diagnosed severe mental illness like schizophrenia or bipolar will not comply with their doctor’s orders to take medication, they can be legally forced to. It was named after Laura Wilcox, a 19 year old college sophomore who was volunteering at the Nevada County (California) Mental Health Clinic during her winter break from school. On January 10th, 2001, Laura Wilcox was shot to death inside the clinic by Scott Harlan Thorpe, a diagnosed schizophrenic.

 

Unfortunately, the bill left the decision of whether to implement Laura’s Law (based on New York State’s similar “Kendra’s Law”) to the individual counties. To date, only Nevada County has implemented it. Los Angeles County, where we reside, has fought off lawsuits brought by civil rights groups enough to implement a pilot program. All attempts by other counties to implement Laura’s Law have been stymied by litigation claiming the law violates the civil rights of the mentally ill.

 

Mr. President, when Jani was only two, long before she presented symptoms of her future illness, I went to see my doctor about what I thought was the flu. It turned out I had pneumonia. I was hospitalized. As part of the protocol for pneumonia, I was administered a test for tuberculosis. The initial skin test came back positive. I was moved into an isolation room. I could not see my wife and daughter without a mask and gloves. My pneumonia improved under antibiotics but only then did I discover that I could not leave. I could not leave until the secondary tuberculosis test came back negative. I was shocked and angry. I wanted to go home. My wife and my daughter needed me. But I was a prisoner by order of the State of California’s Department of Health. Until it could be confirmed that I did not in fact have tuberculosis, I could not leave because if I did I was a threat to public health.

 

Why is it that tuberculosis is considered a threat to public health but severe mental illness is not? Why will Jani be given a choice to destroy what she accomplished and risk herself and those around her at the age of 18? If a person has tuberculosis, we do not let them refuse treatment and return to society. We treat them, not only because of the potential danger to us but also because we consider it our moral imperative to treat the sick. Those with severe mental illness are sick, Mr. President. It is our moral imperative to treat them.

 

If I have my way, my daughter will have a happy and fulfilling adulthood. But that can only happen with legislative help. I am asking you, Senator Feinstein, Senator Boxer, and Representative McKeon to pass the following legislative changes that I believe if were in place now, the 26 victims of Adam Lanza would still be alive:

 

  1. Introduce, pass, and sign into law federal regulations making Laura’s Law/Kendra’s Law mandatory in all 50 US states. This allows parents like myself to continue to have input regarding our children’s mental health treatment, avoiding tragedies like Newtown by making it easier to get our adult children into inpatient psychiatric care
  2. Amend the Affordable Care Act of 2010 to include mental health parity, eliminating annual and lifetime limits on mental health care, specifically inpatient care. Right now, inpatient psychiatrists spend more time on the phone to insurance companies trying to justify the need for further inpatient care than focusing on patients. Due to the elimination of state psychiatric facilities in most states, there is no care system for the chronically mentally ill. Requiring private insurers and Medicaid to treat mental illness as they do physical illness would save untold sums in incarceration. Prisons are currently the only providers for chronic mental health. In California, over 60% of the prison population has a diagnosable mental illness.
  3. Use incentives like student loan forgiveness to encourage more medical students to go into psychiatry. We have a severe shortage, even in major urban areas like Los Angeles.
  4. Pass legislation mandating the Department of Health and Human Services and the Department of Education to develop a program for mental health screenings of public school students, conducted by a team of board certified child psychiatrists. Current law requires visual and auditory screening. Mental illness has a far larger impact on learning ability than a need for glasses or a hearing aide. This would allow us to identify and treat mental illness before it progresses to the point of potential violence.
  5. Pass a budget bill allocating funds to states explicitly for the purpose of building more and better acute inpatient psychiatric facilities. Under current law, when you present to the emergency room with psychotic symptoms, if there are no beds available, you will be turned away. There is a severe shortage of psychiatric hospital beds for both adults and minors. The biggest obstacle to mental health care is not lack of insurance but a lack of facilities.
  6. Call for Congressional Hearings to learn about severe mental illness. Let parents like us come to Washington and share our experiences. Meet our children (for those of us who still have children under the age of 18). Involve parents like us, parents who can tell you everything that is wrong with the system, what we went through, and how we are trying to protect our kids. Do not subpoena just the “experts” because they haven’t lived it. You are not an expert on mental health until you have watched it destroy your child. And do not turn to national “advocacy” groups like the National Alliance on Mental Illness because they willfully ignore the potential for violence with mental illness for fear of “stigma.” We are not concerned with stigma. We are trying to save lives. The unwillingness to face the possibility of violence leads the mainstream mental health advocacy groups to ignore our children, who suffer from the worst of the worst mental illnesses. There is no national organization that speaks for us.

 

 

You have heard only too clearly from Adam Lanza, James Holmes, Jared Loughner, and Seung-Hui Cho but it is too late for them now. When you look at them, all you can see is a killer who took innocent life. You will never get the chance to see who they were before the day they picked up a gun.

 

But it is not too late for Jani. You can still meet her and see who she is now. And if you give me the chance, I can introduce you to thousands of other children who are not yet the visage of a nightmare, staring blankly back from a mugshot.

 

Please, Mr. President, Senator Feinstein, Senator Boxer, and Representative McKeon. Help me save my child.

 

And everyone else’s.

 

 

 

Sincerely,

 

Michael John Schofield

Father of January Schofield

Author January First: A Child’s Descent into Madness and Her Father’s Struggle to Save Her

 

 

 

CC:

 

Senator Diane Feinstein (U.S. Senate-California)

Senator Barbara Boxer (U.S. Senate-California)

Representative Howard “Buck” McKeon (25th District-California)

 

Note: If you are a parent of a child with severe mental illness, I encourage you to use to this letter as a template, changing it to include your child and your child’s symptoms, then mail to the White House at the address above. The White House and your members of Congress need to see your letters and emails. They need to see the magnitude of the problem that led to the tragedy at Newtown, CT. You can submit emails to President Obama here: http://www.whitehouse.gov/contact/submit-questions-and-comments. You can also call the White House at 212-456-1111.

You can find and contact your US Senators here: http://www.senate.gov/ and your member of the US House of Representatives here: http://www.house.gov/

The Cycle Repeated (Burn It Down)

One thing about mental illness… it always pulls you back in.

 

You know what I am going to talk about, don’t you?

 

Oh, sure, I am seeing the Facebook posts that we shouldn’t talk about the reasons for the Connecticut Shooting (how interesting. Now it is capitalized. A proper noun), that now isn’t the time to make to make a political point, that now is not the time to talk about gun control or mental illness.

 

As far as I am concerned, that only applies to the families of the victims. The rest of us have no right to sit around crying “Why?” and throwing around words like “evil.”

 

We just did that a earlier in the week with Clackamas, Oregon. We did it six months ago with Aurora, Colorado.  We did almost two years ago with Tucson, Arizona. We did it four and half years ago with Virginia Tech. We did it nearly thirteen years ago with Columbine.

 

I mean, seriously, how many more times are you going to act shocked? I would think by now you should be getting used to it.

 

What is it, exactly, that shocks you? Is the events themselves or the number of the dead? It’s a legitimate question. What is it that makes this harder every time, instead of easier?

 

Is it because it is getting harder to answer that “Why?” question?

 

“I just can’t make sense out of this,” you say.

 

I am afraid CNN is not going to make sense of it for you. And it is rather inconvenient to our need to understand when these killers keep killing themselves afterward.

 

You are right, though. It doesn’t make sense. Which should tell you something right there.

 

The average number of homicides in the United States is approximately 20,000 per year, of which best estimates suggest those under 18 make up approximately 2000.

 

20,000 homicides per year. Not bad when you consider there are over 300 million of us living in this country.

 

You see them every night on your local news. A gang shooting that left six people dead, including one baby. A hit-and-run that killed a six year old girl. A man arrested for murdering his wife because he believed she was cheating on him.

 

You don’t ask “why?” with those. Why?

 

Because, in a twisted way, those murders make sense to you. You can understand why six people were killed in a gang shootout. It was probably a drug deal gone bad or two gangs fighting over drug dealing turf. The driver who hit the six year old and drove off? Probably a guy who was drunk and already has several DUIs. He runs because in most states, like California, killing someone under the influence is automatically a murder charge. The guy who murdered his wife? She was cheating on him and he shot her and her lover. Okay, so it’s probably not what you or I would do in that situation but you get it. You understand it. It makes “sense” to you.

 

You even understand serial killers, even if you claim not to. They killed because of some sick pathological desire, rooted either in deviant sexuality or “rush” from killing.

 

But those killers all have one thing in common: they try to conceal their crimes and they try to run. They kill and hope to resume living their lives as if nothing happened.

 

It gets a little bit harder to fathom when a guy walks into a movie theater and opens fire at random people and then calmly walks out to wait by his car for the police. It doesn’t make sense when another guy walks into an elementary school classroom and kills 20 kids he doesn’t know and then blows his own head off.

 

Mass killings, where there is no relationship between the killer and the victims, make no sense to you because you can’t find a motive. But you still try, don’t you?

 

Half the country is screaming for gun control. That’s fine, but it would be helpful if you articulated what kind of gun control you are looking for.

 

Ban on assault weapons?

 

None were used. Yes, a Bushmaster .223 semi-automatic rifle was found. In the car in the parking lot. All the victims were shot with two semi-automatic handguns. UPDATE: This was later determined to be incorrect. The Bushmaster was the weapon used. It was a shotgun found in the car.

 

Ban high capacity magazines?

 

Sure. I mean, after all, do you really need 30 rounds to kill a deer?

 

But that only reduces the death toll to between 8 and 15, depending on the capacity of the standard magazine. And they can always reload.

 

Ban semi-automatic weapons in general?

 

Okay. That reduces the death toll to six, or the number of rounds in a standard revolver. Unless the shooter brings more than one gun.

 

Ban all guns?

 

Fine with me. But then these killers can do as the Chinese do…. A machete to the neck.

 

A friend of ours was just attacked by a schizophrenic man with a knife (after he was done stabbing himself repeatedly). Should we ban knives?

 

However will we cut our prime rib then?

 

Canada has more guns, including assault rifles, per capita than we do but they have far fewer mass shootings.

 

No, I am not a member of the NRA and I don’t own a gun. I have two mentally ill kids. Why on God’s now bloodied earth would I own a gun? Frankly, people I know who own guns scare the shit out of me, even if they aren’t mentally ill.

 

Unfortunately, the NRA is right on their famous line: “Guns don’t kill people. People kill people.”

 

Okay, so “evil” then?  What, exactly, is “evil?”

 

“Ah…. It’s doing bad things.” Oh, you mean like eating a grape in the produce section and not paying for it? “No, you idiot! Really bad things. Ten Commandments stuff!”

 

Is “Thou Shall Not Kill” the First Commandment?

 

  1. “I am the Lord thy God. Thou shall have no other gods.”

 

 

Huh. I guess not. God is apparently more concerned that we get who He is than whether we take another life. Well, it’s gotta be number two, right?

 

 

  1. “Thou shall make no graven images or likenesses.”

 

Okay, okay, God, we get it. You da man. Number 3?

 

  1. “Thou shall not take the Lord’s Name in vain.”

 

Jesus Christ! Ooh! Sorry. But when are going to get to the good stuff?

 

  1. “Remember the Sabbath and keep in Holy.”

 

Oh, come on! Really? The Almighty is more concerned that we don’t work on Sundays?

 

  1. “Honor thy Father and thy Mother.”

 

 

So taking the trash out when your parents tell you is more important than not killing?

 

“Thou shall not kill” is number six on the Ten Commandments countdown. Number six! Or slightly more important than not committing adultery but less important than listening to dad and mom. I guess these killers’ parents never sat their kids down and said, “Son, it’s important not to kill people.”

 

I don’t remember the episode of “The Brady Bunch” where Mike Brady sits Greg down to have a serious talk about not killing. Apparently, I missed that one.

 

If fear of damnation is the only thing that keeps us from killing, I guess I better watch my back around my atheist friends, those Godless heathens.

 

Let’s be honest here, okay? If “evil” makes people kill then why aren’t you in church right now, praying for God’s deliverance from your desires to murder? Because obviously you have then, right? The Devil is lurking around, waiting to tempt you into murder, and it is only the Grace of God that saves your immortal soul from pulling the trigger on a Glock 9mm into a classroom of kindergartners.

 

“I respect the law,” you say. Good for you (but make sure to come to a complete stop at a stop sign). But I guarantee that if there were no legal consequences for killing most of you would not be rushing out to do so. Why? BECAUSE YOU DON’T WANT TO!!!!!!!! Not because you are protected by God’s Grace, not because of the law, but because your brain is not telling you to do so!!!!!

 

And that scares you, doesn’t it? The idea that the only thing between you and twenty dead kids lying at your feet is a couple of functioning neural pathways. That all it takes is one break somewhere inside your brain and suddenly you are hearing voices and think everybody is out to get you. That in six months you can go from being a well-liked and reasonably happy individual to planning a mass murder.

 

No other human affliction can make you do that. Not asthma, not diabetes, not leukemia. There is nothing else that can destroy everything you were and remake you into Jared Loughner or James Holmes or Adam Lanza. All of them were once nice boys. But now their names will forever be linked to monstrosity. To senseless violence.

 

“You’re being too negative,” critics say to us.

 

I’m sorry. Is there anything positive about ebola? Anybody? No?

 

“That’s different,” you say. Really? Ebola can turn you into a killer as well. So can HIV. You could give it to someone else before you ever know you have it.

 

Do you know the history of the Black Death? Do you know about the rumors that swirled around Europe after it arrived in Italy in 1347? Some believed it was God’s vengeance. Many more believed the Jews had poisoned the wells and set about killing them on a scale to rival the Nazis nearly 600 years later.

 

Except it was caused by a bacteria carried in the fleas who lived on the rats who lived with the humans at the hole at the bottom of the sea. But nobody knew that until the 19th Century.

 

Today, we call it bubonic plague and it still exists. Every few years, there is an outbreak of it in the American Southwest, usually on Native American reservations.

 

Quick! Kill all the Indians! Actually, we better quarantine the states of Arizona and New Mexico, just to be safe.

 

Ah, but now we have penicillin. We can treat bubonic plague without issue.

 

We can treat mental illness as well.

 

So let’s stop crying “Why?” shall we? You know “why.” Are you aware that all these mass shooters were in their late teens or early twenties, which is the typical age of onset of schizophrenia in males?

 

You want to know how to stop the violence? I’ll tell you.

 

First, you must understand the nature of mental illness. It is a disease and like any other disease it cannot be stopped without treatment. You can’t beat it on your own, at least in its most severe forms (schizophrenia).

 

Second, it can strike anyone. And I don’t mean getting killed by someone with a severe mental illness. Honestly, that isn’t too likely to happen. No, I am talking about YOU. ME. US. Any of us can have our brain turn against us and the rest of the world. If it is going to happen, there isn’t a damn thing you can do to stop it.  And the worst thing is you wont even know it’s happened to you. In the beginning, you will feel yourself starting to change but you won’t know why. You will seek help. And you won’t find it. And that will feed into your paranoia. Soon, who you were wouldn’t even recognize what you’ve become.  The most insidious thing about psychosis is it becomes normal to you because it alters how you see the world and yourself. The voices or the hallucinations, the “bad” thoughts,” it all becomes as much a part of your life as breathing. Most do (we think) fight back. But eventually, without treatment, they lose the fight. The world of psychosis overwhelms the outside world and nothing matters anymore but the thoughts in your head.

 

Third, you have to see past the rhetoric, both the external that will strive to provide another explanation (more gun control, despite the fact that Connecticut already has some the strongest gun control laws in the country), and internal to the mainstream mental health advocacy, are probably screaming at their computer screens right now, “Most mentally ill people are not violent! Michael, you are contributing to the stigma!” That’s our big catchphrase in mental health advocacy… “stigma.” We fight the “stigma.” I suppose because it’s more polite than the truth: MOST PEOPLE DON’T GIVE A SH*T. That probably doesn’t help with the donations, especially corporate sponsors, who want to sponsor “positive” things, “empowering” things. They want the big money donors to feel good about themselves while they toss back their champagne and slap each other on the back for the job they are doing to fight “stigma.”

 

They are right, however, about most mentally ill not being violent. That is true. But it is interesting that I only ever hear that from women, either women with mental illness who are on medication and are functional and fear being ostracized by the judgmental society they are trying to fit into (which is why they play “nice”) or mothers of mentally ill children who don’t want people looking at their son  and seeing a future killer.

 

I understand both of these things.

 

But notice I said “sons.” And notice I made no mention of ever hearing complaints about my contributing to THE STIGMA from men with mental illness.

 

Most mentally ill are not violent. Most are likely to wind of dead simply because, like I said, society doesn’t give a damn. Those women can bristle at what I say because they themselves are not going to be mass shooters. Mass shooters tend to be male and young. So young mentally ill woman worry about the stigma because they have that luxury. But the mothers of mentally ill sons worry about it because they are terrified that, no matter how much of a longshot, it might actually come to pass.

 

Which brings me to my fourth point and the answer to your question of how to stop this violence.

 

Laura’s story and the law in California named after her.  Laura Wilcox was a 19 year old college sophomore volunteering at the Nevada County (California) public mental health clinic when she and two others were shot to death by then 41 year old Scott Harlan Thorpe, who suffered from schizophrenia and was resisting his family’s attempts to get him treatment.

 

Laura’s Law, passed into law and signed by Gray Davis shortly before the citizens of California recalled him for the Terminator, created what is called “assisted outpatient treatment,” or, more bluntly, forced medication. If you are lucky enough to get into an inpatient psychiatric hospital, you will get meds but there is no system to forcing compliance out in the world (other than prison, and currently the California Department of Corrections is the largest provider of mental health care services in the world). Laura’s Law would change that.

 

Unfortunately, it was left up to each California county to decide whether to implement it (the Citizens Committee on Human Rights, which is a Scientology front group, has sued counties that have tried). So far it is only fully implemented in Nevada County, with a pilot program in Los Angeles County.

 

By the way, Mr. Thorpe had sought psychiatric help from the Nevada County Clinic in person several times before and been turned away every time, being told that there was “nothing we can do to help you.” By which I assume they meant they couldn’t get him inpatient.

 

So here is what we need to do if we want to stop the violence. Not everybody is going to like it. Tough.

 

  1. Part of the reason Laura Wilcox is dead is because there are not enough psychiatric hospitals, or “beds” as they are called. This is because building psychiatric hospitals is neither a political priority for funding, for donations, and because nobody wants one in their back yard. You see, even if you present to the ER with psychosis, if there are no beds available, you will be released. Attempts to build more are often blocked by local governments and community groups, who view patients as “inmates” (now there is a stigma we can fight). Nobody objects to the local hospital adding on a neo-natal unit or a stroke unit but they don’t want psych wards. The irony in this is that the mentally ill are already all around them. Do you want the bubonic plague spreading or do you want to treat it? Your choice.
  2. Even if you can find a bed, you won’t be there very long because there is no real parity between physical illness and mental illness. Insurance companies will pay for chemo as long as you need it (or until you die) but they still view mental illness as “behavioral,” which is a code word for “something you could really control if you just wanted it bad enough.” In 1980, the average stay at UCLA’s psychiatric unit was six months. Today, it is four days. You can’t treat cancer in four days. Why in the hell would they think you can treat severe mental illness in four days? Right now, doctors have to balance the need for treatment with how likely they are to get paid by the insurance company or Medicaid. Laws must be passed which force insurance companies and Medicaid to pay for inpatient care as long as doctors feel necessary to stabilize the patient (while at the same time forcing them to offer inpatient and outpatient mental health care, which most individual plans don’t). This is because mental illness is forever. With cancer, the insurance companies know you are either going to get better or die. Either way, they won’t be paying forever. With mental illness, they will. If we treat mental illness like we treat cancer, the number of these killings will drop dramatically.
  3. Make Laura’s Law mandatory across the United States. This is where our advocacy gets controversial. If you won’t take your medications, we must force it. It sounds ugly but if you had bubonic plague, we wouldn’t allow you to refuse treatment. Let me put it in everyday terms. Have you ever been flagged as possibly having tuberculosis?  It’s pretty common if you develop pneumonia. What happens? They quarantine you until they are certain you don’t have tuberculosis. We do not allow the option to refuse treatment for tuberculosis because you are a risk to public health. It’s the same if you are severely mentally ill. You are risk to yourself and to public health. We have to treat you, whether you want us to or not. Human rights violation? Not if you have TB. Don’t like the way your meds make you feel? Talk to your doctor. But you are gonna take something.

 

Laura’s Law is based on New York ‘s “Kendra’s Law,” which has been around long enough that New York State Psychiatric Institute and Columbia University were able to conduct studies of efficacy (how well it works). This is what they found:

 

  • 74 percent fewer experienced homelessness;
  • 77 percent fewer experienced psychiatric hospitalization;
  • 83 percent fewer experienced arrest; and
  • 87 percent fewer experienced incarceration.

Comparing the experience of AOT (assisted outpatient therapy) recipients over the first six months of AOT to the same period immediately prior to AOT, the OMH study found:

  • 55 percent fewer recipients engaged in suicide attempts or physical harm to self;
  • 49 percent fewer abused alcohol;
  • 48 percent fewer abused drugs;
  • 47 percent fewer physically harmed others;
  • 46 percent fewer damaged or destroyed property; and
  • 43 percent fewer threatened physical harm to others.

As a component of the OMH study, researchers with the New York State Psychiatric Institute and Columbia University conducted face-to-face interviews with 76 AOT recipients to assess their opinions about the program and its impact on their quality of life. The interviews showed that after receiving treatment, AOT recipients generally endorsed the program, with 62% reporting that being court-ordered into treatment had been overall a good thing:

  • 38 percent of them reported that AOT helped them gain control over their lives;
  • 81 percent of them said that AOT helped them to get and stay well; and
  • 90 percent of them consider themselves more probable to keep appointments and take medications because of AOT.

 

 

Pretty good numbers. All the major risks to severely mentally ill individuals dropped. And for your benefit, notice the 47% fewer physically harmed others.

 

That’s it. We make those three things happen and we significantly reduce not only the risk of violence but reduce the far more likely causes of death for patients with severe mental illness. It’s a win-win for our society.

 

But why do we (meaning me and Susan) do this? Why do we care when Jani is extremely unlikely to ever be the perpetrator of a mass killing? Why, on our Facebook page at www.facebook.com/janifoundation, keep bringing up all this “negative” stuff instead of focusing on the “positives?”

 

I’ll tell you.

 

When you have a Facebook “page” that people can “like,” it allows you to see how many people have “seen” each status or post. The other day I posted two photos of Jani at school with her hair done in braids by her therapist there, smiling into the camera.

 

Within a few hours, both pictures had been seen by more than 5,000 people. It had hundreds of “likes” and hundreds of positive comments on how well she looks.

 

I hate that.

 

You know why?

 

Because in another thirty years, I will, in all likelihood, be dead. Maybe forty years. And what will happen to Jani when Susan and I are gone? What will happen to her at 18 when we have no legal control over her anymore?

 

I hate the people who want to focus only on the positive because they will be the same ones who will walk past a disheveled dirty blonde bag lady in the street in forty years and not even recognize her as Jani, that cute girl from Facebook and the TV specials all those years ago. You like her now and you want to help now but if you don’t help me to change the mental health care in America before I die, you won’t remember her when she is on the street and dirty and disgusting. None of those five thousand people who “liked” those pictures will be there. I know you too well. You are not bad people. You are human, just like me. And you will forget. Because everyone eventually does. Right now Jani is a subject of fascination but eventually that will fade. But she will still have schizophrenia.

 

NAMI (the National Alliance on Mental Illness) has been around since 1979. That’s 33 years. In that time, they have helped push the biological model of mental illness and I am grateful for that. But I don’t have another 33 years to wait for mental health care in America to move at the glacial pace it has been moving. That is why I am not “positive.” I have to move you any way I can, even if that means screaming what you don’t want to hear.

 

Jani and thousands of kids like her don’t have the time left.

 

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