Open Your Eyes (The Ballad of Bobby)

I was sent a personal message from a friend today. Her son has been called “a unique and complex case,” which is a euphemism in world of psychiatry and mental health community resources for “We have no fucking idea how to help your child.”

 

Which raises a couple of interesting points:

 

At what point does a person’s condition cease to be “unique?”

 

In this particular case, the child in question has a dual diagnosis of both autism and severe mental illness but I want to share something with you.

 

Have any of you with children with severe mental illness ever been told, “Oh, this is your run-of-the-mill bipolar disorder?” Or “This is your average case of schizophrenia?”

 

No?

 

I didn’t think so.

 

I have yet to meet a parent of an “average” or “typical” severely mentally ill child.

 

So why do parents keep hearing this phrase, like the world has never seen a child like theirs before?

 

Especially since the professionals who say this about your son or daughter don’t exactly rush to the phone and call the NIMH, the NIH, or the CDC, right? I mean, that is what you are supposed to do when presented with a brand new pathology, right?

 

No?

 

Why not? Our children are conundrums of medical science, you say. Shouldn’t you be making a phone call? We need to stop this in its tracks, don’t we? We need to isolate the victim until the pathogen can be found and then….

 

…oh, that’s right. Mental illness isn’t contagious. This mentally ill child and his or her family can walk out of your office and you are under no obligation, are you?

 

It’s never going to come back to bite you, is it? Even if months or years later this child shoots up a movie theater or an elementary school, nobody is going know you were involved, will they? HiPPA will wash the blood from your hands. No one will ever know. It will just be the child, who is now a “monster,” and the parents who must have been in denial. CNN will never know that the parents came to you years earlier for help and you turned them away because “it was a unique and complex case.”

 

Unique?

 

Is that what psychiatrists and social workers said 40 years ago when the state hospitals were still open?

 

Here is how we know that kids with bipolar and schizophrenia aren’t a new epidemic, a creation of the pharmaceutical happy psychiatrists and their prescription pads:

 

Because there are bipolar and schizophrenic adults.

 

And I have yet to meet one that says he or she had no symptoms as a child.

 

By the way, it’s also true that there has been a dramatic rise in the cases of AIDS in the last forty years. A 100% increase! Where are all these cases of AIDS coming from?

 

Is it the anti-retrovirals? Are doctors over-diagnosing HIV?

 

It seems to be human nature to believe that if you haven’t heard of it until now, it must not have existed.

 

40 years ago these “unique and complex” cases weren’t so “unique and complex.” They were “mad.” “Disturbed.” “Manic Depressive.” “Infantile schizophrenia” (the old name for what we today call “autism spectrum disorder). And just plan old schizophrenia.

 

One day, Bobby, who had always been a bit “odd,” disappeared. You heard rumors about Bobby threatening his parents with a knife. The police came. Bobby left. Bobby’s parents disappeared for a while. Then they came back without Bobby. Bobby was in hospital for a “stress” if he was male or a “nervous breakdown” if she were a girl. You were told that Bobby would be back soon.

 

But Bobby never came back. Life went on. Vietnam, Richard Nixon, Kent State, etc, etc. Eventually, you forgot all about Bobby.

 

Then years later, you are driving down the street. Maybe you got  kids of your own in the back seat. You see a dirty homeless man pushing a shopping cart, mumbling to himself.

 

You look again. Could it be?

 

It’s Bobby. You barely recognize him under all that grime and facial hair.

 

Do you stop? Probably not.

 

Fast forward a few more years. One day, you see Bobby again. This time he is bussing your table at the local Denny’s. He is cleaned up now. You freeze, wondering if he will recognize you. He doesn’t. You debate whether you should say something. But curiousity gets the better of you. What did happen to Bobby?

 

“Bobby?”

 

He doesn’t seem to hear you the first time. You say his name again. He looks up, with a slightly paranoid look as if he is not sure whether your voice came from his ears or inside his head.

 

“Bobby, it’s me, _____________________! We lived next door to you. I was a few years younger.”

 

“You don’t live next door to me.”

 

“No, when we were kids.”

 

“Oh, yeah! How you doing? Are these your kids?” He is acting like he remembers you but you are not convinced he really does. There seems to be a fog, like you’re a character in a movie that he thought was over.

 

“What happened to you, man? You disappeared?”

 

He mumbles something about being in Sonoma State Hospital until they kicked him out when it closed but things are better now. He has an apartment.

 

Every single person over the age of 50 knows a “Bobby.”

 

Bobby was “odd” when you were kids because he had schizophrenia. But in those days diagnose was done within the wards of state psychiatric hospitals.

 

Now they are done in outpatient offices.

 

Back then a team of doctors made the diagnosis.

 

Now the insurance company or Medicare has to agree with it.

 

Back then, they shot you with Haldol.

 

Now anti-psychotics are a cottage industry, with their names on pens and bright brochures in doctors’ offices. And they are expensive.

 

In short, it seems new to you because what was one done inpatient over months and years is now down outpatient for 15 minutes once a month.

 

That, and 40 years ago CNN and Fox News didn’t exist. The internet didn’t exist. And so news media didn’t need to generate 24 hours of content. Back then, there was no time to talk about Bobby threatening his parents with a knife. Walter Kronkite only had 24 minutes cover the news and there was Vietnam and Watergate. Even local news didn’t have time for that. There were no “fluff” pieces back then, no “human interest” stories. The 11 o’clock news (or 10, depending on where you live) went like this: murder, murder, attempted murder, Zodiac killer case going nowhere, rape, attempted rape, do you feel President Nixon should resign?, weather, and sports.

 

Then “Good Night and we’ll see you tomorrow.”

 

And forty years later, a family gets covered by the health reporter for the LA Times, which gets into the hands of the Oprah Winfrey Show producers, and the rest is history.

 

The doctors and mental health “professionals” that you go to for help now have grown up in an entirely different world, a world without state psychiatric hospitals, a world where the media spins serious social issues into “human interest stories,” a world where there are no “old ones” left to tell them what it was like in day before doctors diagnosed you with an iPad.

 

Your child is not “unique.” My child is not “unqiue.” There are hundreds of thousands of Jani’s in the United Stated. They are only unique in the sense that the brain is not the liver. All livers are pretty much the same. The brain? We don’t know enough about it.

 

No two individuals with the same diagnosis of a serious mental illness will EVER present with EXACTLY the same symptoms. This is not the flu we are talking about. We are talking about the most complex organ in the human body, you know, the one that actually CONTROLS everything the body does, the one where THOUGHTS and FEELINGS come from.

 

Everything you or me or Jani or Briana or Mari or Cole or Jake are is encased within the confines of our skull.

 

And we don’t know a fraction of what can go wrong in there.

 

And we don’t have to.

 

But what we have to know is how to help.

 

And we can’t be doing that if every child with a mental illness is “unique and complex.”

 

Unique?

 

No.

 

Complex.

 

You betcha.

 

But “complex” is not an excuse not to try.

 

Because 40 years ago, “complex” could be locked away in asylums.

 

Today, we have no system at all for treating chronic mental illness.

 

Back to my friend and her son with dual diagnosis. She made a presentation to some bigwigs in her state (South Carolina) on the failure of services for autism and services for the mentally ill to TALK to each other, let alone work together. She has faced autism therapists who refuse to learn about severe mental illness and mental illness workers who refuse to learn about autism.

 

On her own, she develop the presentation on dual diagnosis (ASD and SMI) and came up with trainings.

 

I am very proud of her. She’s a mom, like the founders of NAMI were.

 

Speaking of NAMI, she was writing to me because for years she asked NAMI for help in her times of crisis. For years she asked NAMI for help developing a dual diagnosis training system. For years she asked NAMI to utter a word at all.

 

And they didn’t.

 

So she did it on her own, while raising her young ASD and SMI son. She built a movement.

 

And now NAMI wants their name on it because “important people”(their words) are involved.

 

I thought her son was important.

 

I thought all kids suffering from severe mental illness are important.

 

Ah, I think they mean South Carolina policy makers.

 

Oh.

 

I know this sounds like a pissing match. It is, after all, an unwritten rule that one non-profit does not attack another.

But here is the problem.

 

The Jani Foundation shouldn’t have to exist. NAMI is the National Alliance on Mental Illness, right?

 

Ever since our story became public, family after family has reached out to us, looking for help and support. And family after family, when we ask them, “Where’s NAMI?” have told things ranging from being told “There is nothing we can do,” to being outright ignored.

 

So tonight I decide to go to NAMI.org and finally give the organization a fair shake. I wanted to look at them objectively and without anger. I mean, I am now the head of a non-profit myself and I am getting a crash course in how hard it is. I really wanted to be fair.

 

 

On the front page, big pop-up saying that they need “you” more than ever and to please donate. Okay, no foul. We ask for donations too. I don’t know if I would do a pop-up because it is annoying, and I’m not currently searching for help for my in-crisis child.

 

“Parents of Children with Mental Illness Share Stories with Congress.” Okay, good, good. It seems that since Newtown NAMI National is embracing childhood mental illness more. Not going to criticize them there.

 

“Fitzpatrick encourages early screening.” Good, good. I agree.

 

Words are nice. Actions are better. Let me click on “Support & Programs,” third tab from the left behind “Mental Illness” and “Treatment.”

 

First thing I see is:

 

Find the support you need:

 

NAMI HelpLine

 

The Information HelpLine is an information and referral service which can be reached by calling 1 (800) 950-NAMI (6264), Monday through Friday, 10 a.m.- 6 p.m., EST or by email at info@nami.org

 

Good, good. I mean, I have never known mental illness to respect banker’s hours, but I get it, they only have so many staff. You have to have limitations somewhere.

 

I click on “NAMI HelpLine.”

 

Trained volunteers provide information, referrals, and support to all who have questions about or are affected by serious mental illness. (Okay, the phones are manned by volunteers. That explains the banker’s hours).

The Information HelpLine offers:

  • Information.  We provide general (non-professional) information on illnesses such as schizophrenia, bipolar disorder, depression; issues affecting children, adolescents & young families; general questions about medication; NAMI programs (such as Family-to-Family and In Our Own Voice); NAMI policy positions (such as mental health parity); and more.  The same number you call for referrals is also the same number to get NAMI policy positions? Well, maybe they don’t have the money for multiple lines.
  • Referrals.  Callers are referred to NAMI state offices, local affiliates and support groups throughout the country and to other organizations serving the needs of those affected by serious mental illness.
  • Support.  Trained volunteers,consumers and family members,are in a unique position to offer support and empathy from people who know what it’s like and who have “been there.”

 

 

 

Found the problem. Did you see it? “Callers are referred to NAMI state offices, local affiliates…..”

 

NAMI is a membership organization, constructed of “affiliates.” Which in an of itself is not a bad thing. But this explains why families’ experiences with NAMI vary so widely.

 

Who makes up the leadership of the local affiliates? Is it somebody who will fight to get your child inpatient in a good hospital?

 

Or is it somebody who wants to rub elbows with the local elite?

 

It all comes down to the personal priorities of whomever heads up the local NAMI affiliate.

 

It comes down to who are the “important people” to them?

 

Policy-makers?

 

Or your children.

 

I guess that is the difference. Sure, I agree with many of NAMI’s policies. Sure, I want to see the laws change.

 

But I’m not going to count on it. And I’m not going to wait on them. And I sure as hell won’t give them a free lunch just so I can pretend they are actually listening to me.

So back to the dual diagnosis program in South Carolina. NAMI, you can put your name on whatever you like. But I can tell who the “important people” are.

 

It’s the mother who created it.

30 Minute Life (The End is Not as Fun as the Start)

Last night I watched the Frontline/Hartford Courant piece “Raising Adam Lanza” on PBS. It was slightly less than 30 minutes in length, with the other half being taken up by “Newtown Divided,” about how the citizens of Newtown have divided over the issue of gun control.

 Link to Frontline “Raising Adam Lanza”http://www.pbs.org/wgbh/pages/frontline/raising-adam-lanza/

Link to Hartford Courant article “Raising Adam Lanza” http://www.courant.com/news/connecticut/newtown-sandy-hook-school-shooting/hc-raising-adam-lanza-20130217,0,5614292,full.story

At least I think that what’s the second part was about. I didn’t watch it. Frankly, I am tired of listening to the gun control debate. Or, rather, I am tired of the voices shouting to be heard over the din. The voice I really wanted to hear is a voice so quiet you have to put your ear to the ground, straining to hear any sound from inside the earth, desperate to hear something but knowing that whatever you hear is your own imagination.

 

I wanted to hear from Nancy Lanza.

 

Of course, she is dead and the dead can’t speak.

 

The piece started off with the number 26. 26 victims. President Obama read each one of their names.

 

Except there were 27 victims. Adam Lanza’s first victim, his mother Nancy, is left out.

 

This interests me. Why?

 

In 1999 in Littleton, Colorado, the students of Columbine raised 15 crosses. 13 for the victims and 2 for the shooters, set off to the side. Columbine High School acknowledged all the dead, even the two that killed the other 13. There is something deeply humanistic about that.

 

Oh, sure, I expect the media and the President to leave out Adam. But then I wonder, have they really looked at pictures of Adam Lanza? Because how can you look at pictures of him and imagine that same face, a face that looks overwhelmed by the world around him, wearing all black and battle gear, shoot his way into Sandy Hook Elementary and coldly unload on the staff, teachers, and children. Look up Seung-Hui Cho, the Virginia Tech shooter. Look at his darkly raging face in those photos he sent to NBC News the day he killed 32 people. Look up Eric Harris and Dylan Klebold. Look at the cold smiles. “Evil,” I would say, if I believed in evil. My point is that they made themselves look like killers. There is nothing of that in Lanza’s “deer in the headlights” gaze. It’s like one day he was a shy boy and the next day he was an inhuman killer.

 

There was absolutely nothing that the Courant reporters could find that could explain that transformation.

 

But Nancy Lanza was a straight-up victim, yet she is never included in the eulogies and memorials. Frankly, I expected more from the President of the United States. He’s a father. Is there no part of him that can empathize with Nancy Lanza?

 

Or, on some level, does he blame her, even subconsciously?

 

Let’s not kid ourselves here.

 

What did you ask yourself after Columbine? I tell you what I asked. “How could the parents have not known the boys were building pipe bombs in the garage? Surely, they must have known.” Given that the Harrises and Klebolds lived in big houses in an affluent Denver suburb and I was struggling to pay the bills at the time, I confess that socio-economic jealousy clouded my thinking. “Class warfare,” as Republicans like to call it. In this pre-Jani time, I was still angry over my own perceived slights from my father and others having been raised in a similar upper middle class neighborhood. “Of course they weren’t paying attention,” I said to myself at the time. “They were too busy keeping up with the Joneses, clinging to that upper middle class existence, to notice any pain in their sons.”

 

The arrogance of these statements really bother me now. How quick I was to judge. And I hadn’t even had children yet.

 

What did you say after Virginia Tech? It was a little bit harder to blame the parents because we know that his mother recognized he was “troubled.” But she turned to church. And I will be honest here. For me, there was a little bit of racism in my thinking then. I envisioned diminutive Korean parents, wailing and wringing their hands over their son’s actions, blaming it on “America,” wondering if they never should have left South Korea. I was condescending, thinking there was no way they could have understand mental illness.

 

What I find fascinating now is that I was projecting denial onto Seung-Hui Cho’s parents at exactly the same time I was deep in my own denial about Jani’s continuing behavioral change (she was three when Virginia Tech happened). I was as dismissive of their attempts to help their son as I was of those who suggested there might be something “wrong” with Jani.

 

By Tuscon (Jared Loughner), Aurora (James Holmes), and Newtown, I had seen what psychosis could do. I had seen how it could completely alter the personality of its victim in a matter of seconds, turning sweet into violent. By then, I had experienced my child being a threat to other children.

 

I guess that is what the President hasn’t experienced yet. I remember how protective I was of Jani when she was a baby, almost a bully in my defense of her from innocent but older children who were, like most four or five year olds, not yet in full control of their bodies. I remember glaring at mothers who wouldn’t call their punk five year old away from my precious little angel.

 

Come on, admit it, you parents of neuro-typical kids. How many of you have yelled at a kid that wasn’t your own?

 

And then, suddenly, you are on the other side of it. Other parents glare at you. They yell at your child. You hover over your child in social situations, ready at any second to swoop in AND PROTECT OTHER CHILDREN FROM YOUR CHILD.

 

And you feel those looks, those looks of “What kind of a parent are you? I wouldn’t let my child behave like that.”

 

I feel it because I never look them in the eye. I can’t. It’s not shame. I just can’t bear to see what I must have looked like at one time. So judgmental.

 

I guess President Obama has never had to protect other children from Malia and Sasha. He is lucky.

 

That is why I believe Nancy is left out of the death count. On some level, maybe not even consciously, people, even the President, blame her for what Adam did. On some level, you believe it is her fault. She took him target shooting at a gun range. She exposed him to firearms. She kept the weapons he used to kill the innocent children.

 

She, quite literally, put the guns in his hands.

 

I don’t own any firearms. I never would. I would not trust myself with them, let alone have them in a house with two mentally ill children. I keep the sharp knives high up on top of the kitchen cabinets that only I can reach. We have absolutely no glasses or glass cookware. All of our plates and cups are plastic. Even our butter knives are plastic (the good kind from Ikea). I keep the screwdrivers up high, beyond the reach of Jani and Bodhi. I even keep the fucking cleaning supplies on top of the refrigerator rather than under the sink.

 

So I wanted to understand Nancy Lanza. I wanted to understand the forgotten victim of the Sandy Hook Massacre. It wasn’t that I was looking to blame her. I expected to see clear evidence of mental instability that she willfully ignored, like I had done many years ago.

 

Except that is not what I saw.

 

What I saw shocked me, but not because of any mistakes.

 

What shocked me is that I understood everything she did. Because I have done everything she did.

 

Right from the beginning, she knew Adam was “different.” She brought a toddler Adam to his older brother Ryan’s Cub Scout activities. She would warn people not to touch Adam. No, not the “good touch, bad touch.” Literal touch. Adam hated being touched. He didn’t interact with other kids. He was lost in his own world.

 

Other than the touch thing, I might as well be describing Jani at that age.

 

By the time Adam was in kindergarten, he had an IEP (individualized education plan). IEPs are for kids who have issues that make it difficult to function in general education. Adam was diagnosed with “sensory integration disorder,” a diagnosis not completely accepted within the medical community (then again, neither is child-onset schizophrenia, although that is rapidly changing). I don’t know why he wasn’t diagnosed as autistic then. This was the mid-Nineties and we have to remember that autism wasn’t QUITE as widely known as it would become a decade later. Also, at that time the diagnostic criteria for autism was stricter than it is now. The prevalence of diagnosis today has a lot to with autism being classified as a “spectrum disorder,” eliminating the need for a child to have all the symptoms of classic autism (non-verbal, no eye contact, etc). Since Jani was diagnosed, schizophrenia has also moved toward a “spectrum,” as increasingly psychiatrists feel the determining factor of diagnosis is not the symptoms but how much those symptoms impair functioning. The DSM-V will reflect this new understanding of schizophrenia, eliminating the classic “sub-types” like “paranoid schizophrenia” in favor of a spectrum.

 

When the family moved to Newtown in 1999 and Adam was enrolled in a special ed class at Sandy Hook Elementary, Nancy sent an email to a friend back in New Hampshire, “I can’t write much tonight…I have to work on party invitations.

Ryan’s and Adam’s birthdays are coming up. It makes a very busy month! Ryan is having an “Old Friend” party and a “New Friend” party…Adam is having only a “New Friend” party…but he has 26 new friends!!! “

 

Of course those “26 new friends” were his new classmates at Sandy Hook Elementary.

 

I remember the “old friends” drifting away as Jani’s behavior got more unpredictable. There are still some “old friends” that get invited to Jani’s birthday parties but they are really our “old friends.” Since this academic year is Jani’s first back in a class since she became acutely psychotic in 1st grade (she’s in 5th now), for her 10th birthday we invited her entire class. All seven of them. The “new friends.”

 

But Adam continued to struggle, not with violence. Actually, there is no evidence he displayed ANY violent behavior prior to December 14th, 2012, the day he killed his mother and 26 people at Sandy Hook Elementary. The struggles seem to be with his lack of socialization and dealing with a large class (26 is huge for a special needs class).

 

Nancy considered pulling him out and placing him in a parochial school for the smaller class sizes. Instead, he remained in the Newtown District, but being given work to do at home and only coming to school to work with a teacher after the other children had gone.

 

God, that is familiar. That’s what we did with Jani for four years. Just her, a teacher, and an aide, one to two hours a day, in a classroom after the other kids had gone.

 

It is unclear how long that lasted but Adam was at Sandy Hook in the fifth grade to sign a class t-shirt.

 

Then came junior high.

 

I don’t mind telling you that junior high scares the shit out of me. First, it is a different school district where we live (numerous independent elementary districts and then one massive high school district). Jani’s current school district has for years bent over backwards to create a unique program for Jani. We have already been warned that the high school district will probably “not be able to offer the same level of individual care.” Right now, Jani is a big fish in a small pond, in a class of seven, in a school of 400, in a district of 7,000. In one more year, she will be a small fish in a giant ocean of 21,000 students. I already know that it will be like starting all over again. We will have to fight (again) with a new district to get Jani what she needs.

 

Everything that Jani has known for the last six years will end and she will start over new. And starting over new is traumatic for kids like Jani. It can send them sliding back.

 

It did for Adam. Nancy pulled him and put him into a parochial school but that didn’t work out so it was back to Newtown High School.

 

Nancy would get called to the school several times a week.

 

Yep. Been there, done that. I still feel my blood vessels constricting every time my cell phone rings and I see it is the school district’s main line. Like Susan and I with Jani and Bodhi, Nancy would sometimes go a month or more without a call. And sometimes it was several times a week.

 

We get called for violence or self-harm. Nancy was called because Adam would “shut down,” as it has been described by the former advisor to Newtown High’s technology club. He never completely came out of his shell but he seemed to make some progress, even if it was in fits and starts.

 

Then Nancy pulled him in his sophomore year.

 

We don’t know why. I know that anytime Susan and I have felt that Jani was getting too “overwhelmed,” we’ve pulled her or immediately called another IEP to change her educational environment. We know that stress makes her psychosis worse and every time Jani is doing well and the school starts to (innocently) push her to do more, she regresses. And even though logically I know they are trying to improve her functioning in the world, which requires slow exposure to stress to get used to it and learn how to work through it, our response to take away even the most minor stressors out of fear Jani will fall all the way back to the psychiatric hospital.

 

That combination of fear of regression and not wanting to see your child suffer is powerful. Was it the right thing to do? The former head of the technology club says no, because Adam lost the supports he had at Newtown High. It might have sped up what appeared to be almost total social isolation except for Nancy.

 

But then it becomes a matter of how much suffering are you willing to put your child through? Do you trust the “professionals?”

 

The New Hampshire friend told the Courant reporters, “There’s a lot of counseling help available and not all of it’s good… She was very particular about who she would bring him to….She often didn’t trust … the intentions of some counselors, maybe [thought] they didn’t really … know what they were doing, or they didn’t understand the situation enough to help.”

 

How many times did I write in January First or in my blogs about some professional seeing Jani who I felt didn’t understand psychosis, didn’t understand how to work with Jani, or they just “don’t get it?” I think this comes from the fact that as a parent you live with your child. You see everything. And them some outsider, even one with letters after their name, starts telling you how to parent? But they aren’t there. They don’t live it like you do. And so it becomes very easy to dismiss what they are saying, particularly if they seem fixed on a particular idea that you (the parent) should be doing or you don’t feel they are listening to you. This creates something that all parents of special needs kids deal with, especially those whose “special need” is completely understood: the “bunker mentality.” Everyone not with you, not living the life you live, is a potential enemy for the simple fact that they “don’t get it.” Even while you accept their help, you see them as obstructions, people to be tolerated so you can get some help.

 

It is, I admit, very dehumanizing. You divide the world into those who “understand” (meaning they live it) and those who don’t. You start making up excuses as to why a person can’t possibly understand. Eventually, you even draw distinctions between yourself and other parents of mentally ill kids. Anyone who is different, anyone who would not make the same decisions you would just doesn’t “get it.”

 

Unlike me, Nancy continued to socially interact on her own as Adam grew to maturity. She seems to have really fought against the “bunker mentality” in her own life but not with Adam.

 

We will never know if Nancy’s decision to turn her back on whatever services Newtown High offered was a mistake. Maybe from the perspective of the technology club advisor, they looked like great services but from Nancy’s perspective they didn’t. Maybe Adam regressed again and she blamed the environment of Newtown High. When the technology club advisor, feeling that Adam could be a target of bullying, called Nancy to find out how she gets him to interact, she told him he had been diagnosed with Asperger’s. She also told him that she felt his attempts to reach Adam wouldn’t work.

 

I know that feeling. I know the pessimism. You start to believe. Then you child regresses and you are bitterly disappointed. You can’t be disappointed in your child because you know he or she cannot help it. So your disappointment transfers to those who were trying to help.

 

And then people leave.

 

I can only imagine what she must have felt seeing Adam improve with the efforts of the technology club adviser only to discover he was retiring. I have felt that emotion when a doctor or therapist that Jani loved moves on. In fact, in the fall of 2010 I wrote several bitter blogs directed at a local agency for what I felt was them abandoning Jani (in their case, they were, because they suddenly didn’t feel she was getting any better even though we saw improvement).

 

It shatters what little trust you have left that anyone other than you is going to stand by your child until the end. You lose your faith in humanity. You stand by your child no matter what and you, perhaps unreasonably, expect everyone else to do the same.

 

And so all the groundwork had been laid for Adam to continue to withdraw. Nancy appears to have tried to live two lives, pretending to be happy and upbeat in public while worrying deeply about what would become of Adam.

 

The guns. Why in God’s name would she take him to a gun range?

 

I’ll answer that with another question that I have often read: Why in God’s name did you decide to have a second child when you knew Jani had schizophrenia?

 

Well, first, we didn’t know she had schizophrenia. We knew she had issues, but we assumed she would grow out of them. She wasn’t yet violent. But the main reason was Jani was depressed and withdrawing. She was losing her enjoyment of activities she once loved. It seemed like she felt the world had nothing left to offer her. At five years old.

 

I was desperate to give her a connection to this world. I wanted to see her smile again. I wanted to see the light in her eyes again. Nothing I tried worked. So I agreed to have another child (which Susan had wanted for awhile). In my internal fantasies, I thought a baby sibling would wake up her zest for life. I thought that what she needed was someone to teach as I had taught her everything I knew. I thought she would find joy from guiding her sibling as I had guided her.

 

Yes, I was wrong. But I can completely understand Nancy. She was desperate to bring Adam out of his shell. She was desperate to give him some joy in life. She was desperate to connect with him. And shooting could possibly do that, you can’t tell me you wouldn’t have done the same thing.

 

In the end, it might have been a mistake, but her heart was in the right place. Everything she did, she did for Adam.

 

As it turned out, Adam apparently lost interest in the gun range. ATF reports no record of them going to the range in the six months prior to the massacre.

 

Reports have been tossed around that she was looking into institutionalizing him.

 

Those reports are wrong (as is much of my first blog on the Sandy Hook shooting, “The Cycle Repeated”).

 

There is no evidence she was frightened of Adam. There is no evidence she was seeking to get him inpatient.

 

Perhaps where this confusion comes from is that she was preparing to move.

 

With Adam.

 

Where-ever he was going to go. She was still hoping he would finish college and was looking a different schools where he could study history.

 

It appears she had settled on Washington State. She sold her season passes to the Boston Red Sox (not a minor thing for a life-long Red Sox fan).

 

 

To friends and family, Nancy was again looking for the right educational fit for her now adult son — even if it meant leaving New England, where she had lived her entire life.

 

One family member believes Nancy would not have planned such a move without

Adam behind it.

 

When the family member asked Nancy why, she responded, “You never turn your back on your children,” the family member recounted.

 

She told Tambascio that she planned to continue living with Adam “for a very long time.”

 

“You never turn your back on your children….”

 

Sounds like a hell of a mother to me.

 

And she never did. She was sleeping in the early morning of the 14th when Adam Lanza went down to the guns, bypassing the weapons he would use a few hours later at Sandy Hook Elementary, choosing instead a .22 caliber rifle. She was sleeping as he shot her four times in the head at close range.

 

This was totally at odds with the carnage he would unleash on Sandy Hook Elementary. Four quick head shots. I confess I want to believe that he didn’t want her to suffer. That is my explanation for the four quick “taps” to the head. I have no proof of this but I just can’t bring myself to believe that he wanted her to feel pain. In her emails, she alludes to a life threatening auto-immune illness she had. Perhaps this was as close to an act of love as Adam Lanza could feel. Quick and painless.

 

From then on, we know nothing. Nothing about his motivation. Do I still believe Adam Lanza was psychotic? On that day, yes. I believe a switch flipped in him. Something in his thought process went terribly, terribly wrong because there is no logical reason for what he did, nor is there anything that we know in his history to indicate that he would.

 

And I suppose that is where I come to after four blogs on this topic. In the beginning, I was absolutely convinced that Sandy Hook was a clear case of the “system” failing to identify the warning signs of a psychotic break.

 

Except there weren’t any warning signs. There was no denial on the part of Nancy Lanza. There was no failure on the part of the system. Adam didn’t fall through the cracks.

 

Or if he did, we don’t know how we could have prevented it.

 

At the end, all we have is that something when horribly wrong with Adam Lanza’s thought process. And any hope of being able to understand it, and therefore prevent it from happening again, was destroyed when Adam put a bullet through his brain, ending all thought processes.

 

Adam Lanza’s father and brother? They’re not talking. I wish they would. There is nobody left to blame here, people. We just need to try and understand.

 

Was Adam Lanza under the care of a doctor or psychiatrist? We don’t know. Were Lanza’s “incidents” at school more severe than the technology club teacher knew or let on? We don’t know. Reporters only know what people tell them. Sandy Hook Elementary, which would still have Adam’s records, Newtown High, and any doctors he saw, even a pediatrician, aren’t talking. It’s not a HIPAA issue. HIPAA protection ends with your death. But whatever else there might be in Adam Lanza’s history, we will never know unless those who knew him come forward.

 

I hope they do.

 

Based on what I know, I cannot see where Nancy or the world failed Adam. And that terrifies me. Because Nancy tried everything and was willing to keep trying.

 

Only she never got the chance.

 

If she can fail, any of us can fail. If Adam can become a killer, any of our children can become a killer.

 

So what is the answer?

 

The only thing I know for sure is that Adam was isolated. Self-imposed isolation, but that is what mental illness does.

 

Jani still interacts with the world, even if the things she says are a bit “off.” And that, I think, I hope, will make all the difference.

 

I don’t know that we will ever be able to stop every massacre like Newtown (unless we ban semi-automatic weapons like they have in the UK). After all, Eric Harris and Dylan Klebold went to prom three days before Columbine.

 

But if we focus on socialization over isolation, we might save some lives.

 

And if nothing else, at least we might need more than 30 minutes to tell the story of a life.

 

Link to “Nancy Lanza: In Her Own Words” http://www.pbs.org/wgbh/pages/frontline/social-issues/raising-adam-lanza/nancy-lanza-in-her-own-words/

 

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I Am an Asshole (Cool and Cold)

I am an asshole.

 

This is a fairly common assessment of me by readers of January First over on the book’s thread on Goodreads.com. They like the book. They are unable to stop reading it. They keep going to the end, sometimes in the hope that I will acknowledge I’m an asshole and seek some kind of redemption, although I am not sure what sort of redemption I am supposed to seek. It doesn’t really matter, though. I am not looking for redemption. I didn’t write the book to be liked.

 

No, it’s not that the fact that some readers of either the book, this blog, or our Facebook page think I’m an asshole that surprises me.

 

It’s that they thought I wouldn’t be. That is what surprises me the most. That they can read everything that happened in January First and expect me to come out of that “nice.”

 

Am I missing something here?

 

Now, full disclosure: I probably had moments of “assholeness” before. The time before Jani and her illness is a distant memory but I certainly wasn’t perfect. I think without Jani I probably never would have gotten on medication myself. To the people who speculate that I am mentally ill myself…well, duh! No, I was a perfectly rounded human being before Jani. No, I have always had a more minor mental illness, which when diagnosed goes by the term chronic depression or bipolar 2 (no manic state) but it is better known by it’s common term That guy is an asshole. In females, it is known as That woman is a crazy bitch!

 

I am honestly not criticizing my readers here.  I don’t shy away from my reputation as an asshole. I am just genuinely wondering what they were expecting?

 

Since I didn’t have the chance for much self-reflection in the book (there is such a thing as contractual length), I am doing it now.

 

Well, right off the bat I can tell you part of the problem is that it is not over. Books have to end. Life does not. It’s hard to reflect on something when you are still in it. Reflection is a luxury that comes with being safe and sound. First you have to feel safe and sound. I don’t.

 

Yes, I probably could have waited to write the book until I had to narrate it from my death bed. Or, as some have suggested, at least wait until Jani was grown and could give her “blessing.”

 

I didn’t because that might have changed the ending… the most important aspect of the book and the one that is so easily lost.

 

The book ended with Jani alive.

 

She is still alive.

 

By writing it, I did not guarantee that she would stay that way but I took a meaningful step. I entered her into the canon of public consciousness. From now on, no matter what happens, she is part of the Library of Congress, the collective consciousness of the United States of America. I have increased the odds that when asshole me is dead and gone, there will be people who will remember her and help her.

 

Because Jani still clings to functioning by her fingertips. Those who expect Jani to one day be angry at me for “outing” her to the world may turn out to be right. But first Jani needs to learn to take a shower by herself.

 

You know, the little necessities of life that have to be taken care of before someone can sit and brood over their parents’ actions.

 

It seems like a little thing. Taking a shower. Most of you probably do it every morning without thinking about it. Why? Oh, sure, you’re afraid of somebody sniffing the air while you’re in an elevator and looking in your direction. Of course, that requires social awareness, being aware of the presence of other people around you and that you have to live and work side by side with them. Thank God for deodorant, Dentyne, breath mints, and Binaca. Stores are filled with ways to conceal the normal functioning of our body throughout the day.

 

If you are not socially aware of what other people think of you, how would you know that you needed to clean yourself?

 

But that’s not the only reason you take a shower. Think about the days when you don’t have to go out of your home. Let me ask you this. How long can you go without a shower, even when you don’t have to go out in public?

 

One day. Two days?

 

There is a limit, isn’t there? You know when it is. When you get up from lying down and your skin peels off the bedsheets like Velcro. When it feels like there is a layer of film on your skin. When you start to twitch from hating the feel of your own skin. When you can smell yourself.

 

How long can you go without brushing your teeth? Our dentist said that when he was in dental school, the students had to go one entire month without brushing their teeth, for the purpose of taking a sample of plaque off the teeth for culture. Can you imagine that? An entire month without brushing your teeth? How long does it take before your mouth feels like its lined with cotton?

 

In the end, it ain’t just social decorum that makes you take a shower or brush your teeth or wipe yourself after going to the bathroom. In the end, you can’t stand the way you feel if you don’t. You have to shower. You are compelled. The power of Irish Spring compels you.

 

But what if you don’t have that compulsion? What if you are disconnected from how your body feels so you never get that “skuzzy” feeling? Or “skeevy” as I think the kids say now, as in “Michael Schofield gives me this skeevy feeling like he is exploiting his daughter….” by wish I assume you are saying I give you a feeling like you need to take a shower. Good for you. Your brain is functioning relatively normally.

 

You know what happens if we tell Jani to take a shower?

 

She’ll turn on the water. And just stand there, looking blankly up at the shower head.

 

If I say “Wash your hair,” she will get the shampoo bottle, open it, pour some into her hand, and then slap in on her scalp.

 

So?

 

She’s hasn’t gotten her hair wet yet.

 

Okay, start again.

 

“Jani, wet your hair.” This is followed by innumerable commands of “keep going” because initially she just turns around and moves back into the water stream enough to wet the tips at the end. If she were Bodhi with his short, straight hair, this would be sufficient, but you know Jani’s hair. Everybody loves Jani’s hair.

 

Next, it is “Get the shampoo.” She does, like I described before, and slaps it on her scalp.

 

“Massage it in,” I have to tell her, followed by more “keep going, keep going, keep going….”

 

“Now the conditioner…..Eighty got a cat?….Mix it into your hair….. Eighty’s cat’s name is Seventy-Five?….. Keep going, keep going, keep going….We have to take care of Seventy-Five?…. Keep going…Where is Eighty going?…..Eighty has to go to Bakersfield, I see….Keep going… Yes, I know, we have to take care of Seventy-Five…

 

I will take a thick brush and gently attempt to brush out the tangles. While I do this I talk a blue streak about whatever she thinks her hallucinations are doing because if she screams, if she thinks I am “doing it too hard!” she will take the brush from me and rip it through her curls, pulling out huge clumps of hair without a whimper, which frankly scares the shit out of me.

 

I get a washcloth and wet it, because she will not remember to wet it before I say “Wash your face.” “Washing her face” for her means washing her chin. I suppose I could say “Wash your mouth. Wash your cheeks. Wash your nose. Wash your forehead,” but time is a moving here and we still have a long way to go so I end up taking the washcloth and doing a quick onceover her face.

 

Next, I rub soap into the wash cloth and say “Take the wash cloth.” I won’t wash her body. I haven’t in years. First, it was because after the DCFS investigation for sexual abuse, I didn’t want to take the change. Now it’s because she is ten and a half years old and I shouldn’t even be in the fucking bathroom any more.

 

I have to repeat my command to take the wash cloth several times, either because she is talking about her hallucinations or because she is busy putting her hand up her bottom to make sure she isn’t having a bowel movement.

 

Finally, she takes it.

 

“Wash Amy the arm.” “Amy” is her left arm. The only way I could get her to wash herself was to name her body parts. All of them. “Now wash Annie the arm.”

 

“Now, Sally the shoulder… and Sharon the shoulder.”

 

“Ursula the underarm.” Now that she is on the verge of puberty I make her wash her underarms. It took me forever to think of another female name starting with “U.” “Now, Uma the underarm.”

 

“Now, Chelsea the chest….Becky the belly. Now, Lisa the leg. No, get all of Lisa. You have to do the inner thigh.” She pauses because she can’t remember what the inner thigh is. I try to point to it without touching it but she thinks I am pointing to the outer thigh of “Leslie the leg.” “No, inner thigh. Inner thigh. The inner thigh.” I don’t know how many times I say this. She is just draping the wash cloth over her legs but I figure the soap runs down so the calves will get clean anyway.

 

“Don’t forget about Gina and Tina.”

 

“Gina.” Short for “vagina.” And “Tina the tush.” She spends more time with the washcloth up her butt that anything else.

 

“Okay, now rinse off.” She drops the washcloth. I have to tell her to turn around several times until all the soap is off.

 

“Okay, you can turn off the shower.”

 

She does. Then she screams “I’M WET!!!” at the top of her lungs, as if she just realized. I hand her a towel. She spends several minutes with the towel up her bottom and then attempts to get dressed with the rest of her body still soaking wet.

 

“Remember how I taught you to dry your legs?” I ask. “Wrap the towel around each leg individually and then move down.”

 

Sometimes she does. Sometimes she continues to scream that she’s wet while drying her bottom to the humidity of the Sahara.

 

Sound creepy? Are you creeped out? Does that make you feel “skeevy?” Good. It’s supposed to.

 

By the way, it’s the same process for Susan and Jani’s ABA behaviorist, who comes on certain mornings exactly for this purpose.

 

So am I worried about what Jani is going to think and feel when she is twenty years old?

 

No, I am worried about Jani being able to THINK and FEEL at twenty years old.

 

I am worried about her being able to take care of her basic hygiene.

 

The loss of hygienic awareness is what is called a “negative symptom” of schizophrenia. The hallucinations and the aggression? Those are called “positive symptoms” and they are easier to treat, provided the person suffering from schizophrenia takes his/her medication. “Negative symptoms” are the things that most of have or take for granted but those with schizophrenia do not.

 

And both positive and negative symptoms can kill.

 

Because the negative symptom of lack of awareness of hygiene is the first step to homelessness (or the appearance of it, like the guy in New York City the nice cop bought a pair of sneakers for). And homelessness ends in one of two places: prison or death.

 

Our only hope is to try and lock the process of bathing, body part by body part, into Jani’s mind so it becomes a repeating loop for her.

 

I find the saying “Cleanliness is next to Godliness” depressing. It feels like it is putting the severely mentally ill further and further away from God’s Grace.

 

I have to worry about Jani being able to do the basic requirements of human survival. And you wonder why I’m asshole?

 

While you sit in judgment of how the future will look back on me, I am still trying to ensure Jani is a part of that future. Because in the end I am a mammalian parent. And I do what all mammalian parents do when they feel cornered: lash out. Lash out whether you deserve it or not. It gets to the point where you don’t trust anyone anymore. The parents of the severely mentally ill will die for our children. And we see nothing out there, in your society, that makes us feel anybody else will.

 

You imprison our children. You hit them with stun guns. You pass them on the street. You beat them to death.

 

Why in God’s name would we trust you?

 

Some of us are just better at hiding it than others. Because we know we need you. And we all know our anger turns you off. You are fine with our pain. You sympathize with that. But our anger? No, that makes you turn away.

 

But so many of you turn away anyway. You see a cute girl on TV. You “like” a Facebook page. Then you move on.

 

For most of you, the seed I, and the other parents like me, have tried to plant in your mind will not germinate.

 

But for a select few of you. It will. It will and it will grow despite the aspects of us that you don’t like.

 

I am sorry that I don’t trust you. It will take me a lifetime to trust society again. Not because you are bad people. Not even because you weren’t there. No book in the world can ever truly give you the experience of what loving a severely mentally ill child is like. No, I can’t trust you exactly because of that. You cannot feel what I feel. It’s not the life that I hate. There is no pity here. But there is pain.

 

But you can’t function in pain. You have to get angry or you can’t get out of bed in the morning. And if you can’t get out of bed in the morning, severely mentally ill children will die. Today might be the day that everything unravels. All your victories are temporary. All your failures feel permanent.

 

My greatest failure is not that I can’t make you understand. That is only a shadow of my true failure, which is that I can’t fully understand what Jani experiences. But perhaps if I could, I would be no use to her. I try to tell myself that.

 

So that brings us to a catch-22, doesn’t it? In order to insure the survival and happiness of Jani and the countless children like her, I can’t do it alone. I need you. But the very nature of this experience is lonely. I can’t make you feel it. And so I get angry. And that potentially drives you away.

 

I don’t know how to solve this. I cannot be someone I am not. Neither can you.

 

But maybe, just maybe, in the midst of my anger and your confusion, we can remember that there are children here we need to save.

 

And we can save them.

 

We all need to be saved. We all need redemption.

 

And when severe mental illness does not kill anymore, when it does not destroy lives, that will be our redemption.

 

NOTE: This could very well be the last blog published here. Jani’s Journey will be moving to www.janifoundation.org soon. The Jani Foundation was incorporated in the State of California on December 17th, 2012 (Bodhi’s birthday) and 5o1c3 status is pending.

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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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Never Been This Far From Home

After “Standing in the Middle,” I have to update on Bodhi. How is he doing?

 

At the time that I wrote “Standing in the Middle,” Bodhi was several weeks into a rapid decline, similar to Jani’s declines… initially slow, with warning signs that I can explain away. That is the way psychosis comes. It comes creeping slowly, so slowly that it is easy to dismiss as a “rough time” at first. We react very differently than we would to signs of a physical infection. As parents, our minds leap to the worst possibilities of strep or meningitis at the first sign of a fever. We rush into urgent care, only to learn that our child probably just has a mild viral infection.

 

In other words, the flu.

 

You know what I am talking about. Every single time your child gets sick, you agonize over how long you should wait before seeking medical attention. The rational part of your mind knows that this will probably pass but there is the other part of you that is terrified that every second you delay is allowing the bacterial or viral invaders to gain strength. You argue with yourself, going back and forth between believing you are overreacting to the fear that THIS will be the one time that you did nothing and your child will die because of it.

 

With mental illness, on the other hand, we do exactly the opposite. We rationalize and rationalize, always waiting for the turnaround. We treat colds like we should treat mental illness and treat mental illness like we should treat colds.

 

During the 2008-2009 period that takes up most of January First, the worst part for me was not Jani’s violence. I’ve seen reader reviews that speculate as to my own mental illness and/or to how those years warped my mind psychologically. These are not difficult questions to answer. Long before Jani was born, I was diagnosed with chronic depression. That remains my only formal diagnosis and the one for which I was initially given medication. My personal psychiatrist has speculated that I might also have a mild form of Asperger’s, as well as potential Bipolar II (because I have never demonstrated prolonged “manic” periods, the hallmark of Bipolar I). These potential diagnoses have never been formalized because there is, so far, no need. Whatever I have, Lexapro treats it well enough that I can function. Diagnosis is a factor of functionality. Psychiatrists will only diagnosis and treat what impairs your ability to function. Not function perfectly. The pills aren’t magic. They become necessary when your ability to function becomes impaired enough that it significantly impacts your quality of life. Psychiatry, like every other branch of medicine, is not designed to make you happy. It is designed to make you functional. After that, finding happiness is up to you.

 

How the experience changed me is also relatively easy to answer. Did the experience of trying to bring Jani back from psychosis warp me? Ah… duh. I tried to kill myself. Of course it warped me. It warped the way I see the rest of the world. It warped the way I see Susan. I undergo medication treatment for anxiety (Klonapin) and therapy for PTSD. I literally jump every time I hear a child scream. I have no doubt that my brain has literally been “re-wired.” I rarely acknowledge to myself how traumatic those experiences in the book were, let alone to those around me. I don’t because no matter how traumatic it was for me, it was worse for Jani. I do my best not to think about what it did to Bodhi, which I justify through the fact that he was too young to remember anything in the first year, that after that we split into the two apartments, and had the situation been reversed we would have done the same for him. These are all excuses. I realize that. But if I think to much about it, if I allow myself to really feel all the guilt I carry, I couldn’t function.

 

Psychology used to view emotional repression as a bad thing, a legacy of Freud’s belief that repressed desires would ultimately explode into what was first called “hysteria,” then “neurosis,” and then psychosis. Hence the embracing of hypnosis in the 60s and 70s in the pursuit of “repressed memories.” The result of this, though, did not improve the ability to function. It destroyed the lives of the supposed abuser(s) and left the patient no better able to be a functional adult.

 

By the 1990s, in the wake of the destruction rendered by childhood “regression” therapies, psychologists began to reconsider the role of “repression.” They realize that repression was not in fact a pathology but a defense mechanism that allowed the patient to function in the face of trauma, similar to how young men and women in the military are able to function in the face of death and destruction from combat.

 

In other words, if it works, don’t destroy it for the myth that emotional knowledge always leads to wholeness (what I call the Good Will Hunting concept of psychology, which nobody outside of Hollywood movies and Psychology 101 classes actually practices). You know: a good cry and a strong bear hug and everything’s better.

 

Except that Good Will Hunting didn’t have a sequel to show that Will would continue to struggle with his emotions for the rest of his life. Damn you, Matt Damon.

 

So, yes, I am warped, if you want to to call it that. I am forever changed by what I experienced.

 

How should be fairly clear.

 

I see psychosis like a parasite, an invader of the mind.

 

Because, like I said, Jani’s violence was not the worst part. The worst part was watching the illness, whether it had the name “schizophrenia” or not, erode who Jani was. The worst part of mental illness, and this is common to ALL mental illnesses, is that they gradually destroy the personality of the victim. You watch your loved ones fade away before your eyes. Who they were. What made them laugh. What they used to love. Everything that makes us unique, you watch slowly disappear. The hardest part is watching your child’s personality eaten away.

 

I watched Jani de-evolve. Regress. Move backward. Slip away. Not grow up. Not change because she was learning and growing but change because external stimuli increasingly didn’t matter to her. The body still looked the same but the personality, the person Jani was, slowly disappeared.

 

Because the mechanism of schizophrenia and its long term outlook are still relatively unknown, at the time of her diagnosis, the dominant theory was that schizophrenia was a neuro-degenerative disease like Alzheimer’s. The belief was that you couldn’t stop the decay. You could only hope to slow it down.

 

Unfortunately, I took this to mean that every psychotic episode literally ate away another part of Jani’s brain, of her personality. I was so terrified because I believed that whatever damage the illness had done could not be reversed.

 

This is what really warped me. My entire existence became about detecting even the slightest hint of psychosis so I could get her into UCLA and stop the degradation of what was left of Jani’s mind. I watched her like a hawk. I shadowed her. I viciously fought back against any person I perceived as endangering Jani’s fragile stability, because anxiety opens the door to psychosis. If you look back at my older blogs from 2010 you will see I had no reluctance to drag people’s names through the mud. I absolutely went overboard. If I perceived that someone was putting Jani at risk of destabilization, I set out to fucking destroy them. I used this blog as a weapon to those who I believed had failed Jani, putting her at risk, and a threat to those in the future not to do the same thing. My blog, and the audience I had, was used as a weapon to turn to public opinion against whomever I perceived as “unfit” to work with children with psychosis.

 

I don’t really know how much damage I did during that time. I know a former therapist of Jani’s resigned. I got an aide at Bodhi’s school fired. I was a one man fucking wrecking ball.

 

In retrospect, there is a fine line between protecting Jani and Bodhi and turning my emotional pain on those who were convenient targets. It’s a hard line to walk.

 

I fluctuated between an unwillingness to fight the battles that needed to be fought and an immovable rage at the rest of the world, which should explain why in January First I can tell Susan her idea is crazy on one page and agree with her three pages later. I turned on a dime, struggling to control my emotional response, driven only by the desire to protect my children from any pain, which in my mind meant protecting them from up and down nature of living in the real world.

 

And Susan was exactly the same. If I ever get the chance to write another book, I will explore our relationship, both its positives and negatives.

 

So what does all this have to do with Bodhi?

 

Well, when you know that you have one child with schizophrenia and you know that statistically siblings of those with schizophrenia have a higher chance of also developing schizophrenia than the general population and, most importantly, you have become wired to see every single minute change in behavior as an early warning sign of psychosis, it became very easy to jump to conclusions as Bodhi began his rapid change in behavior over the last month. It didn’t matter that Bodhi’s change in personality was not like Jani’s change. It didn’t matter that while Jani’s change was persistent and permanent, Bodhi would swing from his normal happy self to being absolutely terrified. It didn’t matter that Jani never showed fear of ANYTHING until after she was on medication (by which I mean fear of things that can harm her). It didn’t matter that Jani progressively lost her attachment to us and showed no fear of being left in the hospital until AFTER the psychosis had begun to stabilize under a successful cocktail of medications. It didn’t matter that my conception of the damage of psychosis being irreversible was in fact wrong, that studies show that with medication, over time the brain actually begins to “fix” itself, restoring eroded brain matter and growing new neural pathways, that the only permanent impact of psychosis is loss of memory during the periods of psychosis. All that mattered was Bodhi was changing and we, and all of his behaviorists, were powerless to stop it.

 

I was already running through in my mind what anti-psychotics other than Risperdal can safely be given to a 45 pound child (answer: not much) when we saw “Dr. Howe” (as I named her in the book), just as we do every week.

 

She took Bodhi’s anxiety very seriously. She could see it, in her office. But she said something to us:

 

“If Jani didn’t have schizophrenia, if you didn’t have that experience, if you were starting from scratch with Bodhi, would you still think it was schizophrenia?”

 

I was stunned.

 

Because I knew the answer.

 

Of course not.

 

I am afraid Bodhi was schizophrenia because Jani has it.

 

“I understand the desire to jump straight to psychosis,” Dr. Howe continued. “Part of me wants to do that too, because of what we know about Jani.” She leaned forward. “But we have to treat each patient as unique. We have to put aside what we know about Jani and consider Bodhi by himself…

 

…and I am not seeing signs of psychosis.”

 

I didn’t believe her, but she has always been right. I still keenly remember flip-flopping back and forth between believing Dr. Howe knew what she was doing with Jani and believing she was an idiot. But in the end, her patience paid off. UCLA was able to make the diagnosis in Jani because they had more than a year of notes and observations from Dr. Howe. Dr. Howe spent all of 2008 trying to figure out what was going on. She never gave up. Not on Jani. And not on us. She understood our desperate desire for an answer but she pushed back as gently as she could against our demands for one.

 

Learning to trust is still one of my issues.

 

With Bodhi, what Dr. Howe focused on was the same thing we were focusing on: Bodhi was getting stuck in these thought loops, crying, throwing himself around, repeating the same thing over and over again despite our reassurances that whatever was bothering him was resolved.

 

When a person gets locked into a repeating thought that they cannot break out of, that is a thought disorder, and thought disorder is one of the “positive symptoms” of schizophrenia.

 

Except that schizophrenia is not the only mental illness that has thought disorders.

 

In schizophrenia, during psychosis, thinking operates independent from reality. It is the thoughts themselves that make no sense.

 

Bodhi’s thoughts made sense. He was afraid of Susan leaving, even just for a few seconds. What didn’t make sense was that he would keep repeating “Where did Mommy go?” in terror even after Susan was back and actually holding him. What didn’t make sense, what was “disordered,” was that Bodhi was continuing to focus on an event that was already over, unable to break free. It was as if his brain couldn’t catch up with reality.

 

There is, it turns out, another mental illness that does that.

 

Obsessive-compulsive disorder.

 

Do you remember how I reacted in January First when Susan first brought up schizophrenia? Do you remember what I thought of schizophrenia? I thought schizophrenia was what those people on the street corner arguing with thin air had. And they do, but the point is that that was my only conception of schizophrenia. I had no knowledge of the nuances of the illness.

 

Likewise, my conception of OCD was the people who have to wash their hands 270 times a day because they are terrified of germs or who have to check 40 times that the front door is actually locked.

 

Ah, but that is only the “compulsive” part in OCD. And just like no two people with schizophrenia present exactly the same symptoms, no two people with OCD present exactly the same symptoms.

 

Our friend Ruben, upon hearing what we were going through with Bodhi, directed us to the ending of the Howard Hughes biopic, The Aviator, staring Leonardo Di Caprio.

 

“Jets are the way of the future,” Howard says after successfully getting the Hercules (better known as “The Spruce Goose”) to fly. “Jets are the way of the future.” Then you see something in his face change. “Way of the future,” he repeats. “Way of the future. Way of the future. Way of the future. Way of the future.” And he keeps going, unable to break out of this thought loop.

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Everybody knows about Hughes’ odd behavior, but generally the focus is on his compulsive qualities (storing the jars of urine). The Aviator, in that final scene, shows the thought loops that can occur with OCD.

 

What Dr. Howe was seeing in Bodhi was not psychosis. He couldn’t break free from a disturbing thought, whatever that thought might happen to be in that moment.

 

Did she diagnosis him with OCD? No. His diagnosis remains autism. But she prescribed Prozac.

 

Prozac? Shit, two blogs ago I railed against the prescribing of Prozac for PSYCHOSIS in the UK. Prozac is an SSRI. An SSRI drove Jani deeper into psychosis, making her literally climb the walls. SSRIs carry a “black box warning” for minors due to increased risk of suicidal ideation.

 

But Bodhi has not shown any suicidal ideation. He is not a risk taker. Reluctantly, I agreed to try it, telling myself that Bodhi was not Jani.

 

That was two weeks ago.

 

Bodhi improved almost immediately, although Dr Howe warned us of the “honeymoon” period with new drugs. So far, the Prozac is working. Bodhi no longer spends every single waking moment in a perpetual terror. He still gets upset when Susan leaves the room but I and his behaviorists can help him through it. He is making progress again with his ABA therapy.

 

But most importantly, his personality is back. He is sweet, playful, and slightly mischievous little boy he was. He is talking again. Communicating.

 

Will it last? I don’t know.

 

What about Jani? Jani is struggling a bit right now. But it isn’t the psychosis, at least not completely. Jani is ten now. She is growing up.

 

Remember how I said that once psychosis is under treatment, the brain rebuilds? Well, what that means is that emotional, cognitive, and psychological development restarts. It picks up where it left off. Psychosis started taking Jani at three. She was seven by the time she began to stabilize. Full stabilization took another two years. So at minimum, Jani lost three whole years of her life. The memories are gone, which is hard, but it also stopped her development cold.

 

Now she is on the verge of puberty. In girls, hormones begin to cycle up to two years before the first period. Adolescence is creeping in at the same speed the psychosis used to creep in, which is what usually allows me to ignore it.

 

But adolescence is coming anyway. And adolescence is the time for all of us when we all have a little disordered thinking, a little strange behavior. Personalities can radically change. Basically, it is like schizophrenia but without the hallucinations.

 

And then Jani is still catching up on those lost years. Dr. Howe and Jani’s therapist point out to me behaviors in Jani that are commonly seen in five and six year olds. Social problems that in most kids are resolved by now Jani is still dealing with. So what I am always terrified is a sign of psychosis is actually multiple developmental stages happening all at the same time, as Jani ping-pongs from about five years old to pre-teen.

 

So where does that leave me, the guardian against psychosis? Well, it is still there, competing with the other changes going on with Jani, only this time those other changes have a fair shot. I now have to accept that psychosis is now just a single facet of Jani’s life… not something that completely defines her.

 

Jani and Bodhi are learning to deal with the rest of the world. They have issues, but they are still out there.

 

I know I have to do the same thing.

 

Because my emotional development stopped too.

 

Things aren’t going to change overnight. I can’t just suddenly stop, particularly when I know the psychosis is still out there. I still can’t really leave Jani alone. I still don’t feel comfortable working outside of our apartment where I can do my teaching online at night.

 

I will be completely honest with you.

 

I am terrified.

 

Because I now know there actually IS another life after schizophrenia. I wasn’t prepared for that. I didn’t think there was anything on the other side of this mountain.

 

But there is.

 

We have reached “the undiscovered country.” The future.

 

And just like Jani and Bodhi, I have to figure out how to live in it.

 

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Update: We will not be able to make December rent without help. Any donations via Paypal to donations@janisjourney.org.

A Thanksgiving Memory (Books for Better Living Guest Post)

Books for Better Living asked me to write another guest post for them and I was thrilled to oblige. The post was supposed to be on a “Thanksgiving Memory.” What I wrote was taken from one of the deleted scenes from January First. It is not quite a happy memory and it’s not quite a bad one, either. http://www.booksforbetterliving.com/2012/11/a-thanksgiving-memory-michael-schofield/

Standing in the Middle

I hate beginnings.

 

It’s always been the hardest part of my writing. A million things have happened. So where do I start? “Start at the beginning.” Okay, but where’s the beginning?

 

The published version of January First (not including the prologue) starts on Jani’s fourth birthday. However, previous drafts started much earlier in time. The very first drafts started before Jani was even born, some as far back as when Susan and I first met. Others started when Susan and I found out she was pregnant with Jani. Others started shortly after her birth in those first hellish months of when she was not sleeping.

 

Where, exactly, do you begin a story? Because whatever point you begin, there was always something earlier. It’s hard to figure out where it all began.

 

This has always been a problem with my writing. I start to tell a narrative and I end up going backward, not forward.

 

With January First, I was contractually obligated to 85,000 words, give or take a thousand. The focus of the story also had to be Jani, not me. That is why the revelation that I shook Jani as an infant in Chapter 30 seems odd. The set up chapter for that is gone. Originally, there was an entire chapter devoted to that, the third chapter of the original draft. Why was it cut? Partly it was to improve the narrative flow. In the original drafts, there was a pretty big jump from Jani’s infancy to the onset of her increasingly odd behavior between 3 and 4. It would have forced the story to jump more than two years between chapters. Second, and I’ll be honest here. There was concern that having such a scene so early in the book would hurt my “likeability.” Which makes me find the reviews that find me unlikeable funny. I was even more unlikeable in earlier drafts.

 

See, I did it again. I went backward, not forward. The paragraph above has nothing to do with trying to write this blog at all, yet there it is, and it will stay there because I don’t have an editor for my blogs.

 

Back to the beginning. I suppose the point of the paragraph about what was cut from the book is that in the end I had to start somewhere, and since it was Jani’s story, it had be, if not the beginning of her life, the beginning of its loss, or the loss of what it might have been, what we have all been working for five years to restore. Because after the not sleeping and the constant need for stimulation, Jani was fine. Jani had a very distinct personality. So the beginning of the book was the beginning of Jani unraveling and, by extension, Susan and myself.

 

I am much better at endings. My two favorite words to write are “The End.” We don’t write like Greek Tragedies. Modern narratives, no matter how awful, have to end with a sense of hope. Very very few writers ever defy that narrative style. You have to give the reader a glimpse of the light at the end of the tunnel. You have to make them feel that even if you are not at the summit yet, you can see it and you know that, one day, you will get there.

 

And that is not a trick or a lie. As the writer, you have to believe that. If you didn’t, you couldn’t tell the story. Just like the reader, the writer has to feel that s/he has a place to go. You can’t take the reader to hell unless you are going to show them the way out. And you can’t go to hell unless you believe, on some level, that you will come back.

 

I guess that is my long winded introduction to the point of this blog.

 

I have to go to hell again.

 

Bodhi.

 

My response to the question, “How is Bodhi doing?” have ranged from silent to evasive. This may seem odd considering that I have been on TV talking about Jani’s schizophrenia, but if you’ve read the book, you know that me being silent or evasive or deflecting the question is not inconsistent with how I was with Jani. I wrote the book in present tense to show how I thought and felt in the moment with Jani. I guess I didn’t do a very good job of conveying that those aren’t my feelings anymore.

 

I do get asked if Bodhi has schizophrenia. This is easy to answer. “No.” But think about the question. You are not asking me if I BELIEVE or FEEL or THINK Bodhi has schizophrenia. You are asking me if he has it. No, he has no diagnosis of schizophrenia, so I can say “No” and leave it at that. I’m not lying or being evasive because you just asked me if he has it, which I interpret to mean, “Does he have the diagnosis?” No.

 

So why does the question keep coming up?

 

There’s a few reasons:

 

  1. Although not conclusively proven, there is a strong suggestion that there is a genetic component to schizophrenia. When it first appears, and because its onset is rather slow, a child with schizophrenia appears to be “patient zero,” which is why the media keeps advertising Jani’s story as “one of the youngest people ever to be diagnosed with schizophrenia.” Although this is not true. It’s only true in the last two decades. It’s new to the media. It is new to psychiatrists who went through med school in the gap between the closure of the state mental hospitals in the 70s and 80s and the last decade. You also have to remember that the birth rate hit in the United States hit its nadir in the mid-1970s, gradually increasing again through the 1980s and 90s as social mores about children and decreasing acceptance/use of abortion changed. The 1970s were the anathema of the “kid-centered” culture that would rise in middle-class America beginning in 1982. Oddly enough, the 2000s have seen a return of the “bad seed” portrayal of children in horror films that we saw in the 1970s and movies tend to represent a culture’s underlying fears.

 

But there is another reason why your child is not really “patient zero.” You don’t think about mental illness, unless you have been diagnosed with a particular severe kind. What to Expect When You’re Expecting does not have a chapter on possible mental illnesses your child might have. In baby care classes, they teach you how to resuscitate your baby with infant CPR, not what do when your child begins a radical personality change. You think about banking your baby’s cord blood with hope that, God forbid, your child ever develops leukemia, you have stem cells in cold storage. You NEVER EVER think about serious mental illness. You don’t even know what the hell schizophrenia is. Okay, you know that’s probably what the bag lady raving to herself on the street corner has, but you never think about how she got there. You never go back to that woman’s beginning. You never realize that at one point in her life she was normal. You don’t think about the fact that this woman was once a fully functional human being. She is just who she is now. There is no backstory and if it crosses your mind at all, you chalk it up to bad circumstances (abuse, drug addiction, etc).

 

Of course, growing up you heard whispers about certain family members, the strange aunt or uncle or cousin you never knew. When you ask what happened to them, your parents or grandparents largely brush the question off. Only after your child’s symptoms intensify and you are crying to them on the phone about how you have no idea what is happening to your child, does a family member say, “You know, Uncle Joe used to act like that.”

 

WHY THE FUCK DIDN’T YOU TELL ME THIS EARLIER??!!!! Is what you want to scream.

 

And slowly, gradually, you learn the truth: that your families are riddled with mentally ill individuals. Some of them eventually got a diagnosis and got shut away in an institution. Some never got diagnosed but still got shut away in an institution. But because this doesn’t come up in conversation during Thanksgiving, because these distant family members were gone, either to institutions, death, or narcotics and alcohol, before you were born, you never knew. You never knew that your “crazy” great uncle or second cousin really was crazy and, if you press your hazy memoried parents, actually had a diagnosis.

 

I don’t know if this holds true in cultures that still have extended families but one of the great failures of the Western nuclear family is it destroyed family history. I know everyone in my family who has died of heart failure or cancer. Schizophrenia? Bipolar? Not so much. And those who can answer those questions are either dead, out of touch because we moved to America, or their memory is hazy because the last time they saw their “crazy” or “lunatic” cousin was fifty fucking years ago.

 

So your child is a puzzle in a family history with most of the puzzle pieces missing.

 

  1. But in that hazy history, you learn that the crazy great uncle was the sister of your “odd” grandmother. Why was she odd? Because she would sit the corner and stare at nothing. Oh, and it turns out she was in and out of mental hospitals and received ECT for twenty years.

 

What?!!!

 

But I did it too. I spent most of my teens and twenties referring to my mother as “crazy.” It wasn’t until Jani was diagnosed with psychosis that I began to look back and see that maybe my mother chasing after me with a butcher knife when I was twelve because she thought I was her FATHER was more than just her idiosyncrasies. Oh, so that’s what a delusion is. I always wondered how she could be so convinced my father was a mafia hitman.

 

And once you start looking for it, you see it everywhere. Okay, so maybe that explains why my Uncle Michael, my namesake, was a violent drunk whose wife left with the kids. Maybe that explains why my Uncle David was a raging alcoholic whose wife and kids also left him and whom I would frankly be shocked if he is still alive. Maybe that explains why all my uncles were just a little “off.” They weren’t bad guys. I loved them. They were fun. But as I grew older, I heard increasingly disturbing stories about them. But because we moved to America and my parents divorced only a few years later and my mother broke off all contact with me, I never saw any of them again.

 

  1. Every single family that I know that has a child with a serious mental illness and has more than one child has more than one chld with a serious mental illness. Not exactly the same mental illnesses. Not exactly the same symptoms. But if you got one, you’ve likely got another. Some even have three. Some have two with the third one apparently spared.

 

For now…

 

So why did the producers of “Born Schizophrenic: Jani’s Next Chapter” ask about Bodhi’s mental health? Why did “Mornings” on Channel 9 in Australia mention it?

 

Is it because of this probability of genetics?

 

No, not really.

 

It’s because they see it with their own two eyes. You see four minutes of footage on TV but that four minutes took an entire day to shoot. You see 44 minutes of footage with “Born Schizophrenic: Jani’s Next Chapter” but the shoot took three months. The basic rule is that for every minute of footage, one entire hour is left on the cutting room floor. The “20/20” we did back in 2010? Our segment was maybe 16 minutes total. You want to know how much footage they shot? 1500 hours of video.

 

My point is that what you see on camera is not what the producers and the film crew saw. You see the footage they chose to use to fit the story they were trying to tell and within their time constraints. You see a fraction of the total footage. There is enough footage on Jani and all of us to fill an entire channel 24 hours a day for at least a few years.

 

And every time, they have to re-introduce the story, which burns time and why they tend to use the same footage over and over again. And they have to tell the story, hitting the major points, engaging the audience who has never heard of Jani, and tell it coherently and get out in time for the next segment on Khloe Kardashian.

 

And what is more dramatic: show ten minutes of Bodhi terrified by something we can’t see, desperately trying to tell us something but it makes no sense, repeating the same thing over and over again or show a quick two second clip of Bodhi screaming and pointing out the car window and then ask the father with the schizophrenic daughter if he thinks his son also has schizophrenia?

 

It doesn’t help that Susan will tell anyone who will listen she thinks Bodhi has schizophrenia.

 

“Michael, your wife has made it pretty clear she believes Bodhi has schizophrenia. Do you feel the same way?”

 

“Ah…. Can we talk again about the time I snapped and shook Jani when she wouldn’t sleep?”

 

I have no problem talking about all the mistakes I have made. I have no problem talking about the shaking. I did it. I own it. Do I think it caused Jani’s illness? No. I have no problem talking about when I was accused of sexual abuse. I actually do talk at length about these things but the media leaves it out because none of that is as interesting as whether Bodhi might have what Jani has.

 

So what goes through my mind when I am asked that question?

 

“No, of course not. But I have a history of denial. For every person who criticizes me for ‘pushing’ for a diagnosis of schizophrenia for Jani, there are a hundred more who criticize me for not getting help for Jani sooner, for being so convinced her symptoms were just a product of her genius that I ignored what is plain as day to them in the book.”

“Susan comes off like she is nuts, but she was also right. She always has been. She listened to Jani, really listened to her, long before I did, and she continues to listen to her better today than I do.”

 

“I know damn well this isn’t ‘mimicking’ because Bodhi is too young to remember Jani at her worst and I don’t buy the Jungian subconscious bullshit that things that happened to you that you don’t remember affect your life. The two apartments, Susan’s idea again, protected Bodhi from Jani until she was relatively stable. That, and I believe kids mimic psychosis about as well as you can get down on your hands and knees and pretend to be a horse well enough that I might actually confuse you with a real horse and try to ride you.”

 

“I see my son suffering. He is scared. Terrified. Jani was never scared like that. Jani was never scared of anything. So it can’t be the same thing.”

 

“Bodhi isn’t violent. He will sometimes bite or hit but he is panicked. Jani was never panicked. There was no emotion.”

 

“But whatever this is is eating away at his personality, just like Jani. The happy Bodhi is disappearing under this all encompassing terror.”

 

“My son is suffering and I can’t fix it and neither can the medications nor the ABA therapy.”

 

“I cannot go inside Bodhi’s head and even worse he cannot tell me what he is experiencing. Once again, whatever is going on has made me an outsider. Is that my fault because I pretty much ignored him due to Jani in his early years? No, because he is same way with Susan and Susan never ignored his emotional needs.”

 

“Something is happening to Bodhi. Something is going wrong. And it is getting worse.”

 

Editing cuts out my long pause between the question and my answer, which in “Born Schizophrenic: Jani’s Next Chapter” was, “It doesn’t matter. Whatever he has, we’ll deal with it.”

 

Except that was bravado. That was seven months ago. Bodhi was, I could say then, doing okay.

 

He’s not doing okay anymore.

 

So what is the answer to the question, Michael? Do you think Bodhi has schizophenia?

 

“I don’t know.”

 

Yes, you do. You just don’t want to admit it because then it makes it real. How long are you going to wait?

 

“Wait for what? There is a protocol that must be followed. Every child is unique. We can’t just jump to schizophrenia because of his sister.”

 

That’s not an answer. Several times now you have saved him from opening the oven while it was on. Didn’t Susan’s “crazy” uncle die from an unexplained death related to an oven?

 

“What the fuck do you want me to say? Is there something wrong? Yes, there is something wrong. But this could still just be autism.”

 

Just be autism? Since when did autism become better than schizophrenia?

 

“Psychosis.”

 

Whatever term makes you feel better. Even if it is autism, how is that better? Bodhi is still isolated from his peers, just like Jani.

 

“Autism can be treated.”

 

Oh? Really? How is that ABA therapy working out so far?

 

“He’s still young and he is not as verbal as Jani.”

 

Yes, he is. You just don’t want to listen.

 

“I can’t do this again. Whatever road he is on, it doesn’t lead anywhere good. I can’t do it again. I can’t go back to hell!”

 

So that’s what it is then.

 

“Yes! Alright! You happy?! I can’t do it again. I’m older now. I don’t have the energy.”

 

What did you say to people who wrote on the internet that one day Bodhi will hate you for neglecting him?

 

“What?”

 

What did you say to them?

 

 

 

 

“I said that if that ever happened, I would tell him had the situation been reversed, I would have done the same for him.”

 

And now it is.

 

“No, it isn’t. Jani’s stability is still fragile. Moment by moment. It’s not even good days and bad days. It is good moments and bad moments.”

 

But she is getting better.

 

“And I am barely hanging on.”

 

Bodhi will get better too. You are scared of going back to hell. You’ve already been there once and you and Susan brought everybody back out.

 

“I can’t do it again.”

 

You don’t have a choice. You made a promise to Bodhi in the days when Jani was very sick. Now you have to follow through. Now, one more time: Do you believe Bodhi has schizophrenia?

 

“I can’t answer. I won’t answer.”

 

So eager to diagnose Jani but you lose your balls with Bodhi. How does the name change anything? That is what you are always saying. You are a fraud. You say the label helps but you refuse to label him.

 

“I will say what I have said before. Something is very wrong.”

 

That’s what you said about Jani, too.

 

“THEY ARE NOT THE SAME.”

 

But that is what you wanted. You say it in your book. You wanted a child who would “get” Jani.

 

“But that was before I knew she was mentally ill!”

 

And who says God doesn’t listen.

 

“I hate beginnings.”

 

Everything is a beginning.

 

 

Jani at a Halloween party at her school. I have to face facts. She is growing up.

 

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Insanity in the UK

I’m a big fan of the English band, Muse. I’m a fan of their most popular album to date, “The Resistance,” released in 2009. I’m a fan of the first single of that album, “Uprising.”

 

I sing along with the lyrics…

 

“Paranoia is in bloom,

“The PR transmissions will resume

“They’ll try to push drugs to keep us all dumbed down

“And hope that we’ll never see the truth around.”

 

I like the song, even though that third line rattles around in my head.

 

“They’ll try to push drugs to keep us all dumbed down”

 

It’s hard to know what songwriter and Muse frontman Matt Bellamy means by that line. Is he literally referring to drugs or are “drugs” a collective metaphor for anything that distracts us from “the truth?”

 

If he is being literal, exactly what kind of “drugs” is he referring to?

 

I am not NAMI or “BringChange2Mind.” I don’t nitpick semantic uses of terms for mental illness in popular media. People and children with mental illness have bigger problems than words, like a lack of services and care. You know, serious things that might kill them if they don’t have them.

 

I don’t care about Matt Bellamy’s choice of lyrics. What I do care about is British attitudes toward the use of medications in treating mental illness.

 

A lot of my thinking about this has been sparked by responses I am getting from across the Pond to the airing of “Born Schizophrenic: Jani’s Next Chapter” in the UK. Like everywhere else in the world that Jani’s story reaches, I get a spectrum of responses.

 

I will give credit to the Brits for not suggesting an exorcism. That gives them one up on Americans-they’ve at least moved beyond superstition.

 

I will also give them credit for being FAR more polite about their distaste for our keeping Jani on medication than the American anti-psychiatric movement. How very decent of them. They make me a least feel like they would offer me a cup of tea and invite me to sit in the garden before proceeding to tell me how stupid I am.

 

(Note to British readers: There is no point to telling an American how stupid he is. It is an exercise in futility. I would have thought you would have learned that about us by now. If we didn’t listen to you 237 years ago we’re not about to start now).

 

The anti-psychiatry movement is everywhere, largely funded, no matter what they may say, by Scientology (because who else is going to give these fringe organizations money?) but nowhere in the English speaking world is there more “resistance” (sorry, Matt) to prescribing anti-psychotics to children than in the UK.  There is resistance amongst Australian doctors, New Zealand doctors, and Canadian doctors but nothing to level of resistance that exists in the United Kingdom.

 

But a country with a population of over 60 million is not going to be without children with mental illness.

 

First, let me say that your care of adults with mental illness is far superior to us. It’s your children with mental illness that you neglect. I know this because I talk to members of our adult MI support group from the UK who have no problems getting medication. I also know parents who are watching their children decline and can’t get a doctor to prescribe anti-psychotics.

 

It’s that British doctors are completely in denial. They will diagnose. A mother from the UK reached out to me recently. Her daughter has a diagnosis of conduct disorder and ADHD.

 

But no meds.

 

So (and this is not the first child from the UK that I have heard this happen to), doctors across the Pond will diagnose but not treat.

 

Oookaaaaay.

 

Over here, it is the other way around. Psychiatrists won’t diagnose but they will still treat. A psychiatrist will tell you, “I am not sure what we are looking at yet” but still write you a prescription for risperadal. And when that doesn’t work, they’ll write you a prescription for Clonidine. And when that doesn’t work, they will write you a prescription for Seroquel or Abilify. And on and on and on.

 

In America, providing you have insurance, your child will go through so many medications you will lose count and years of continuing or worsening symptoms without ever getting a diagnosis. It is hard to know if Jani would have gotten her formal diagnosis had we not, after more than a year, backed the UCLA doctor into a corner so she admitted what all the attending psychiatrists who participated in “rounds” (the daily observation and discussion of each patient) were already thinking but didn’t want to admit to. There was no other possibility left for them and for Jani. But I still don’t know if they would have actually given her that formal diagnosis had we not pushed for a NAME to this THING that was taken our daughter (her diagnosis actually didn’t become formal until her discharge from UCLA after four months inpatient).

 

But in America it doesn’t really matter. We wanted the label out of a desire to name the “Beast,” as if naming it would take its power (like The Exorcist). But the label didn’t change the treatment.

 

Sorry to break it to those of you who think Jani is on the medications she is because we “pushed” for the diagnosis of schizophrenia. It’s the other way around. She was already on the medications. In America, the diagnosis develops out of what medications work (to some extent-there must still be observation of psychotic symptoms). But the point is that doctors in America treat the symptoms and worry about the diagnosis later. If anything, the diagnosis is really just a means to be able to bill insurance or Medicaid.

 

In America, it is the treatment that matters. Does it work?

 

This is not a question they seem to be asking in the UK.

 

By the way, it’s not that American psychiatrists believe medication is a cure-all. Nobody is that stupid. But medication is the cornerstone, the base, of all other treatments (and yes, this includes autism in America as well). This because if you can’t stabilize the individual’s psychotic symptoms, anything else you do will be pointless, including “therapy,” whatever that means. And what do you mean? “Therapy” can be a lot of things: play therapy, recreational therapy, occupational therapy, music therapy, art therapy, equine therapy, animal therapy (all except the horses are included as part of UCLA’s inpatient program-yes, dogs come to visit the kids on the unit twice a week).

 

Unfortunately, none of those therapies is a cure all either. Why? Because you need to stop fucking trying to kill yourself or beat your head against a wall or chew on a chair or destroy your environment before you can even do any of those things.

 

American psychologists have come to understand that therapy without stabilization is pointless. You won’t get anywhere. Therapy is part of the maintenance of mental illness, not the initial treatment. Therapy is about learning to live with these diseases of the mind. Medication is what treats them.

 

They aren’t perfect. In fact, they are scary as hell and they must be watched at all times. But they remain the most effective means of TREATING mental illness over the long term and they remain our best hope for getting some out of a psychotic episode and back into their life in a relatively short amount of time (hopefully).

 

Yes, this is what we parents tell ourselves every time our children develop a side effect. This is what I tell myself every time I have to take Jani for a blood draw to check her chem levels. This is what I tell myself every fucking time either of my children go to sleep.

 

Every so often, we “forget” to give them a pill. Is it conscious? Maybe. Contrary to the opinion of the ant-drug crowd, we are always hoping to reduce the levels. So we “forget” a dose and see what happens.

 

The first day ends really well and you start to wonder. Maybe. Maybe they don’t need this high a dose. Maybe things are getting better.

 

Then the second day, everything starts to fall apart. Not rapidly. It’s more like watching paint curl in the heat of a fire and peel off. You see the disease creeping back. You see your child fighting back against it. And you see them beginning to lose.

 

So you, painfully, return them to the prescribed dose. You ride through the next day or day as the psychosis gains ground, because it takes a few days for the drug to return to therapeutic levels.

 

And no matter how lively and spirited your severely mentally ill child is on doses of neuroleptics that would put a neurotypical person into a coma, it doesn’t take away the fear. I still check on Jani in the middle of the night, just to make sure she’s breathing, even though logically I know there has never actually been a confirmed case of a child dying from anti-psychotics.

 

Yes, despite what the anti-psychiatry people will tell you, there are no reported cases of a child dying from these drugs (pre-1975), save Rebecca Riley. Rebecca Riley is all they have. And the only ones who really know what happened to Rebecca are her parents (both convicted of murder), the District Attorney, the Judge, and the jury in their respective murder trials. This is from the Wikipedia page on Rebecca Riley: “The medical examiner’s office determined the girl died from ‘intoxication due to the combined effects’ of the drugs Clonidine, valproic acid (Depakote), Dextromethorphan [cough suppressant], and Chlorpheniramine [anti-histamine] and that her heart and lungs were damaged due to prolonged abuse of these prescription drugs” [Brackets mine].

 

Rebecca remains the sole casualty of neuroleptic drugs (assuming that is what killed her-I am only going off what the medical examiner determined). The mother was convicted of second degree murder and the father was convicted of first degree murder. First degree murder in all 50 US states requires proof of intent to kill. Not neglect. Not “willful disregard.” That’s manslaughter. Murder requires intent to deprive of life.

 

The DA would not have sought this conviction and the judge would not have let it stand had there not been sufficient evidence. So it would appear Rebecca’s death was not “accidental.”

 

There are no other proven fatalities from neuroleptic drugs in the United States. Even the black box warnings of risk of suicide in teenagers on SSRI class anti-depressants are based on speculation, but there is sufficient concern that American doctors generally avoid SSRIs with children.

 

Which brings me back to Merry Old England.

 

At our last appointment, I asked Jani’s psychiatrist where she thought the British resistance to medications comes from. She attributed it to the UK’s single payer health care system. “To keep costs down, they limit the number of drugs available.” She exhaled. “Over there, they prescribe Prozac for everything, even psychosis.”

 

Prozac? Prozac actually does have a “black box” warning for those under 25. Interestingly enough though, that is only in the US. FDA studies and MHRA in the UK came up with conflicting data, or rather conflicting conclusions about suicidal “ideation” in children on flouxetine (prozac). In the US, the psychiatrists equate suicidal ideation with increased risk of suicide. The MHRA, on the other hand, does not consider ideation to be an automatic increased risk factor for suicide.

 

But I am not sure I buy her explanation. It seemed to “American” of an answer. Besides clozapine is used in the UK (with less restrictions than in the US) and thorazine.

 

No the “resistance” is something greater than the UK’s single payer healthcare system. British psychiatrists simply do not want to put kids on neuroleptics.

 

Why?

 

So I started searching for the answer in British culture.

 

British attitudes toward mental health can, I think, be best summed up by Pink Floyd, the boys from Cambridge.

 

One of the most well known Pink Floyd songs is called “Brain Damage,” from the “Dark Side of the Moon” album. Indeed, the band originally referred to this song as “The Lunatic,” referred to through-out the song…”the lunatic is in my head.”

 

Roger Waters has said that the lyrics for this song drew heavily upon the decline of Pink Floyd founder and (by that time) former member, Syd Barrett (the lyrics, “And if the band you’re in starts playing different tunes…” is a direct reference to Syd’s last days with the band when he would often play a completely different song from the rest of the band).

 

Yet two years later, during the recording of “Shine on You Crazy Diamond,” a song actually about Barrett, when the real Barrett suddenly showed up in the studio and offered to play guitar, the rest of the band had no idea what to do. They had no idea how to deal with his strange behavior and speech. Roger Waters was almost in tears and later, on his way to David Gilmour’s wedding reception, passed Barrett walking along the road and ducked down to avoid being seen.

 

Pink Floyd embraced “madness” in their songs, but couldn’t deal with the real thing in their face.

 

And I think that pretty much sums up the English attitude to mental illness. So much of your culture actually celebrates insanity (hell, even your King George III went insane). You pretty much “invented” mental illness (Bethlem Royal Hospital, better known to the world as “Bedlam,” was the first true mental hospital ever, dating back to the 13th Century).

 

I am not trying to be critical. We Americans are just as capable of denial.

 

I remember the murder of James Bulger in 1993 near Liverpool. A two year old boy tortured and beaten to death by two ten year old boys, Robert Thompson and Jon Venebles. It was a horrific crime to an innocent child. I remember the horror and anger that humans, children, could be capable of such barbarism.

 

Then again, Lord of the Flies was written by an Englishman, wasn’t it?

 

That book implied that with the loss of adult supervision, children become monstrous killers. Except, of course, Ralph and Piggie. Humanity is lost with Piggie’s death.

 

I think there is still a part of your culture that clings to the belief that you can keep “madness” at bay with strict rules and discipline.

 

Pink Floyd can tell you otherwise. It’s not your cruel headmasters. It’s not your history of conformist culture (which is really no more conformist than ours). Really, America and the UK aren’t that different.

 

James Bulger would be 22 now if he were still alive. I realize Thompson and Venebles are not great examples because they lack empathy. There is a pathology at work there, but not severe mental illness.

 

I think of the “infamous “Liverpool 38,” 38 people who saw Thompson and Venebles pushing along a crying Bulger and didn’t intervene, which is not entirely true. Many did, but Thompson and Venebles convinced them that Bulger was their little brother.

 

Did any of them actually ask Bulger if this were true? I don’t know. Maybe he wasn’t verbal enough.

 

My point, Great Britian, is listen to your children. Parents, listen to your children. Even the English mother who wrote to me seeking help for her daughter doesn’t realize that the “bad behavior” that she sees in other children and blames on other parents is possibly mental illness.

 

And to the English doctors, I say this: medications won’t kill the children you suspect are mentally ill…

 

…but that stiff upper lip just might.

 

Oh, and one more thing.

 

I was born in Australia to Australian parents. I am white. My last name is Schofield.

 

Where do you think my genetics come from?

 

The highest concentration in the world of people with the last name of “Schofield” or “Scofield” (both derived from the Old English word “scow,” or hut that shepherds used to live in) is Lincolnshire (Yorkshire is second).

 

The genetic line that led to Jani is still alive and kicking in the UK. There are “Januarys” all around you.

 

Medication is not the cure-all. But they contributed significantly to giving Jani a very good shot at life and happiness.

 

You’re good people. You sent your children out of London to the country during the Blitz. You know how to take care of your children.

 

Well, this is another Blitz. And this is not one you can get your children away from. Because it is inside their heads.

 

In many ways, the English are the strongest people in the world. You fought off the Nazis while we Americans were still twiddling our thumbs. Now the situation is reversed. You cannot afford to twiddle your thumbs. Severe mental illness does not respect an arbitrary age, even if you do.

 

Think about the Beatles, think about the Rolling Stones, think about Eric Clapton. What did they do? They took American blues music and sold it back to us.

 

Everything we do, you’ve done better.

 

So treat your mentally ill children better than we do. Take what we have started and make it better.

 

Make it better.

 

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Never See the End of the Road

Jani’s psychologist sees her at school now so I rarely get to see her (the psychologist).  But she happened to be there in the school office waiting with Jani when I arrived the other day to pick her up. I wanted to catch up, see how she felt Jani was doing, so the assistant principal took Jani into her office while I spoke to her psychologist.  I asked her what she and Jani were working on.

 

“We’re working on games, specifically on how to…” she glanced over at Jani, about twenty feet away, and mouthed “lose.”

 

I nodded. This is why Jani won’t play any games, and games on the playground are critical to socialization. “Well, I am open to any ideas you have. I’ve never been able to convince Jani of the old adage that it’s not whether you win or lose but how you play the game.”

 

“Well, to be honest, it’s something even regular kids have a hard time with,” she answered.

 

This got me thinking. When do when learn how to lose?

 

I congratulated her on the San Francisco Giants getting into the playoffs, which inadvertently continued the theme of losing. I thought about my own brief experience in Little League. I rode the pine for most of the season. When I did get to play, I was stashed in right field (because most hitters are right handed and tend to pull the ball to left field, the so called “hot corner” in baseball). When a ball was hit my way, I seemed to have this fear of being hit which would delay me coming in on the ball. Funny how at 10 years old nothing seems worse than being hit on the head by a falling fly ball. I still remember the only two at bats I got that season. My first at bat, I got hit in the head by the pitch, which, just like in the professional game, means an automatic walk to first base. My second at bat came two months later during the tournament. I faced the same pitcher. I never learned to time my swings or try to guess if the pitch was a ball or a strike. I just swung. And somehow I made contact and hit what is called a “comebacker,” which is a ball hit right at the pitcher. He followed his natural instinct, which was to jump. The ball shot underneath him and passed by the shortstop into the outfield.

 

A stand up double and an RBI. My only hit in my illustrious baseball career.

 

Personally, I never cared whether the team won or lost. All I cared about was getting through the game. I didn’t want to field. I didn’t want to hit. I didn’t want to play.

 

I have the vague memory that my Dad put me into Little League for that one season primarily to “socialize.”

 

I kept trying to remember when I had learned to lose. It wasn’t as a kid because I never cared about winning. I can count on one hand the number of fights I had growing up and I lost every one of them. I had a problem with punching another kid in the face. It seemed too harsh. So I went for the stomach while my opponents had no problem clocking me in the head.

 

Try as I might, I could not remember learning to lose when I was a kid. It’s hard to learn to lose when you don’t care.

 

It didn’t hit me until Jani and I were on the drive home.

 

I didn’t learn to lose until I was an adult.

 

Hope is like everything else. It’s probably inborn but also influenced by your environment. My childhood was not perfect but I never wanted for anything materially. My father earned a good living. I never had any doubt that I could achieve whatever I wanted. For me, it was more a matter of the desire to do so.

 

When I ran away from home for three months at 16, I accepted that I had to go to inpatient treatment in order to come home. I embraced that program because I had the desire, not because I really wanted to come home (because I didn’t feel it was my home) but because I knew it was the only way to get back on the road to anywhere other than death. I gave up drugs and drinking because I had the desire to get out and the only way out of Minneapolis, out of my home, was to be a functional human being and finish high school and go to college (all of which my father paid for).

 

When I decided at the end of my second semester at the University of Arizona to up and move to Los Angeles to be a screenwriter, I had the desire. I truly believed I could “make it.” Looking back at my arrogance in those early years in LA, it’s a good thing time travel is not possible because I would go back and hit myself in the side of the head. I had this unshakeable faith, if you want to call it that, that I would make it. I got good jobs but left them because I was convinced they would stop me from achieving my goal. I kept dropping out of college because I was convinced I wouldn’t need it. I let Susan support us and she did, apparently based entirely on my faith. And when my faith would falter, hers stepped up. In many ways, it still works that way today. It’s funny to read criticism of my treatment/portrayal of Susan in January First. Funny because first they don’t seem to realize the book is written in present tense, meaning it is a reflection of how I felt THEN. Funny because I read comments like “He criticizes his wife for a decision and then does the very same thing a few pages later, yet never acknowledges that [Susan] was right.” Which is true. I blamed Susan because it was easier than facing the reality that I was dealing with a problem I could not fix.

 

You see, I was losing. And I’d never lost before. I’d either won by default, by accident, like the time I hit that double in Little League, or simply continued to live in denial, thereby allowing me to keep from conceding defeat. If you think I am an asshole from reading the book, you would have DESPISED me in the early drafts. My assholeness was toned down at the request of my publisher.

 

Hell, I tried to kill myself because I couldn’t concede defeat. I’d never learned to lose.

 

It’s still hard. I haven’t won Jani back. I’m just in another form of denial that says that she will make it through the very hard challenges that remain. Either that or I have more faith in her than I do in myself.

 

I’ve never explained on this blog why I am now a life-long fan of the Angels.

 

The Los Angeles Angels of Anaheim, formally the Anaheim Angels, which is what they were known as in 2002. The fall of 2002 was the first time I had ever watched the MLB playoffs. This was back when Jani wouldn’t sleep unless she was held and we had no cable back then so I found myself sitting up night after night. And with nothing else to watch, I watched the playoffs. I watched the Angels mow down the Yankees with Jani in my arms. I watched the see-saw of the ALCS with the Minnesota Twins, torn in my allegiance because I had partially grown up in Minneapolis. But there was something about the Angels. Maybe it was the fact that they entered as the AL “wildcard,” meaning they were the underdogs. Maybe it was the fact that they had never been to the “Big Show,” let alone won it. Maybe it was that no one expected them to make it and yet every single time it looked like they were out, they fought back. Maybe it was because my brother in law bragged about getting access to  a sky box at Pacific Bell Park (now AT&T Park) which created in me a dislike of the Giants that I would not have already felt.

 

On October 26th, Game 6 of the World Series, the Giants were leading 5-0 heading into the bottom of the 7th inning. I was sitting in the easy chair, holding the sleeping Jani in my arms (or “Janni” as she was then known), waiting for the inevitable end.

 

After Giants starting pitcher Russ Ortiz gave up consecutive singles to Troy Glaus and Brad Fullmer of the Angels, San Francisco manager Dusty Baker pulled Ortiz for Felix Rodriguez, one of the best bullpen arms in the game. Next up to bat for the Angels was Scott Spezio. Jani started getting fussy and I was not paying attention as Spezio fouled off pitch after pitch. Jani suddenly cries out in her sleep and jams her arm out. I am more concerned with getting her settled down so it takes me a minute to realize the TV just got louder. At the same moment Jani cried out, Spezio hit a three run home run to put the Angels back in it. That was the turning point. They would come back to win Game 6 and take Game 7 for their first World Series.

 

Since then, I’ve always considered Jani, and not the Rally Monkey, to be the Angels true good luck charm. They should put her up on the Jumbotron down at the “Big A.”

 

Believing in destiny is a form of blind faith. It was what keeps you going through losing seasons. Jani is in a winning season. Bodhi? Up and down. The Angels? Well, they got eliminated in game 160 of the season when Oakland won their 92 game.

 

I can handle losing a game. I can even handle a losing season. That’s essentially what I tell my friends and support group members with special needs kids going through a tough spot. I don’t use those words exactly but I am essentially telling them that things will turn around. I am playing manager to a ballclub. I have to believe that every day we got a chance to win, even if it takes us all another ten or twenty years to go to the proverbial World Series.

 

Except losing in sports has no real consequences. The worst that can happen is you get fired. Then you get hired on by another team.

 

It’s not like that with special needs kids. I am starting to realize there isn’t always another team. I am starting to realize there won’t always be another season.

 

I’ve seen families, including my own, lose battles. But what I am beginning to see, because I have known some of these families for several years now, is the loss of the war itself.

 

And it kills me. When our story first became public, I would hear from families who had lost their son, daughter, brother, sister to mental illness. More specifically, to suicide, the most common form of death for the mentally ill. I would write back and promise them that their son, daughter, brother, or sister did not die in vain, that I would change things.

 

Arrogance?

 

Maybe. Maybe the reason I rail against NAMI and other mental illness non-profits is because I want to believe it is THEIR failure that these kids are dead. They didn’t do enough. They didn’t bleed dry to save them all.

 

Maybe it’s denial. There should be no casualties of mental illness because we have the resources to stop it. We have the money. It’s just not going to the right people. With enough people and enough money we could have an around the clock support system. Pretty hard to kill yourself if we never leave you alone.

 

And if I could do that, I would. If I could surround you, whether you are an adult or an child, with friends who never left your side, flesh and blood friends whose job it was to stand guard against the ones in your head who tell you to hurt yourself, I would.

 

If I could get every parent of a mentally ill kid to totally focus on their child, if I could drag people out of their house and force them to stand guard, I would.

 

But we come back to desire, don’t we? You will only do what you want to do.

 

I’ve watched mentally kids grow into mentally ill teenagers. Some of them are very nearly adults now. And it hasn’t gotten any better. There have been moments, yes, but the disease inside their brain still has the advantage.

 

And what terrifies me is I see death now. I see it everywhere, hiding in the shadows, reaching out its long fingers for these kids, kids who are getting closer to adulthood and the loss of their last true defenders, their parents.

 

I see some parents beaten down. Not giving up on their child or children, but realizing that the end of the war is coming soon and they are not likely to win before their child or children rolls over the age of 18.

 

And I get furious with them. I want to scream at them that it is not too late, that it is never too late.

 

But I don’t know. These are parents who have fought the war longer than me and parents who have fought a more difficult war than me. There is the other end of the spectrum of people who read January First and comment “That was so awful.”

 

Not by a long shot. There are FAR worse cases in the world, in your country, in your state, in your neighborhood, than Jani. Jani’s hallucinations are primarily benign. I have seen kids scream in terror. Jani is not suicidal. Jani is not really violent anymore. There is worse, much worse. Jani has schizophrenia and it is a challenge and I am proud of her for everything she has achieved. But she doesn’t have the worse case of schizophrenia I’ve ever seen. Not by a long shot.

 

I still tend to blame other parents for not doing what Susan and I have done (even if what we’ve done is impossible) because I refuse to accept defeat. I can’t lose. I never learned how. So it must be your fault.

 

But I can’t know that. I can’t know that anything you did or anything that I did really made a difference. I only want to believe that because I can’t just walk out of the dugout and into the tunnel because for some of your children, there will be no next season.

 

So I overturn the baseball bats. I scream at umpires. And, yes, I do get ejected (notice I don’t get invited to mental health events despite having arguably the most “famous” mentally ill child in America).

 

I’m “nice” when I have hope, when I have faith. When I start to lose that, I become the world’s biggest jerk. Anything to delay the end of the game, even if it gets me ejected.

 

So what is the point of all this?

 

I am scared of losing. I am terrified of it. I am terrified of the phone calls I am still to get, the phone calls telling me “_______________ is dead.”

 

I want to win the game. I want to win the Big Show. I know, I believe, we can do it. Collectively, if enough of us care, we can change this world, adapt it for these kids. We will make it.

 

But we won’t make it with all of our kids.

 

As much as I want to deny that, that is the fact. Dr. Martin Luther King spoke about the “Promised Land” and he acknowledged that “I may not get there with you.” He was right. He didn’t get there with us.  But he started us on that journey. We haven’t made it there yet ourselves. We are closer, but we haven’t made it.

 

So this is what I want you to do, whether you are a parent or a family member of a mentally ill child or someone who knows or works with mentally ill kids. The next time you see them, I want you to say something to yourself.

 

I want you to say, “That’s Dr. King.”

 

I pray for the time to help get your child to the promised land. But I may run out of time. We all may run out of time.

 

But whether your child makes it there or not, remember this….

 

They started the journey.

 

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Can’t Lose One (We Love You More Than You Know)

I know the expressed purpose of this blog is to update you on Jani and Bodhi and us as a family. And I am fully aware that rarely do my recent blogs deal directly with Jani. Part of this is self-defense (see blogs “Miranda” and “Miranda Part 2” for explanation). Part of it I don’t necessarily have anything significant to report (for those of you who blog or are thinking about blogging-never let your blog become a daily record of every event in you day-it’s boring). But mostly it is because this was never just about Jani or Bodhi or Susan or me.

 

It’s about the other children and other families you’ve never heard of because they’ve never been on TV or gotten a book published.

 

Our publicity is pointless if it does not serve as a vehicle through which we can bring attention to the plight of others.

 

Let’s face something here. You only know about Jani because of three events, all of which occurred by what could be considered a twist of fate.

 

First: On November 19th, 2001, I planning on meeting a friend I knew from school at the restaurant he worked at as a bartender. We shared a common interest in screenwriting (at that time, still my career goal). Susan was worried about me going to a bar. I haven’t had a drink since I was sixteen because it didn’t do me any good back then. I am the infamous “dry drunk.” I don’t trust myself. I don’t trust myself to stop with one drink. So I don’t. I did not plan to drink that night. I’ve been around alcohol and been able to refrain before so I found Susan’s concerns baseless that afternoon. I just wanted to go hang out with a buddy.

 

Susan convinced me to stay the only way women can convince men (particularly 25 year olds like I was then) to do anything. I checked the bathroom drawer and we were out of condoms. “Don’t worry,” Susan says to me. “We’ve done it before and I never get pregnant.”

 

There’s a first time for everything.

 

Afterwards, Susan felt what she describes as a “click” in her uterus, like it was locking down, but chalked it up to gas.

 

It wasn’t gas, of course. It was Jani. And the rest, as they say, is history.

 

Jani might have come later, you might say. Maybe. But I was stalling on having kids. It wasn’t that I expressly didn’t want kids. It was that I was 25 and still waiting for my “ship to come in.” I hadn’t finished college, had no job, and was pursuing my “dream.” I had no means of supporting a child and my father had drilled it into my head that I shouldn’t have children until I was “established” (which I equated as having, get this, one million dollars, or the approximate cost of raising a child from birth through college). The idea of having a child was terrifying to me. How long would I have put Susan off? For her, having children was a “dealbreaker” in our marriage. What scares me is when I wonder if I would have been willing to break that deal had the Universe not taken care of it for me? I am not sure I could have been trusted to bring Jani into this world willingly (all this was in the early drafts of the book but deleted for length purposes). So Susan and the Universe and my own libido took it out of my hands.

 

Second: In 2009, during the worst of Jani’s psychosis, Susan was sharing what we were going through with a former co-worker named Stacey Cohen. Stacey was incredibly moved and, without our knowledge, happened to know Shari Roan, the then heath reporter for the LA Times. Shari contacted us and followed our lives for about three months. We agreed to the story because at the time I was constantly fighting our insurance company, Blue Shield, for further hospital days for Jani. Our hope was that the publicity would get Blue Shield to back off and let UCLA treat Jani. What was I supposed to do when Blue Shield kept sending me letters saying they were denying authorization for further inpatient days because “the patient has shown no improvement within a reasonable amount of time and/or there is NO HOPE of improvement.” Yep, that is what insurance companies do to the mentally ill. If you don’t get better within a few days (bad insurance) to two weeks (great insurance), they simply deny authorization for further payment to the provider (hospital). Do they do that to kids with cancer? I don’t know. Maybe.

 

Yes, I used the LA Times as a weapon against Blue Shield. I thought that if the public found out about how Blue Shield kept trying to deny care to Jani because they didn’t feel she was getting better fast enough for their bottom line, it might make them back off for a little while (and it did-for a little while).

 

But it was that article that led to Oprah, 20/20, Discovery Health, and eventually the book deal.

 

So you know about Jani because I was fighting an insurance company and because of Stacey Cohen and Shari Roan.

 

Third: The aspect of our story that really got attention was not that Jani had child-onset schizophrenia. It was what we did to keep her with us instead of sending her away to out of state residential. What everyone in the media was fascinated by was that we traded in our two bedroom apartment for two one bedroom apartments, one for each child. They were fascinated that Susan and I would actually physically split up in order to hold our family together.

 

How we came to that decision is in the book. If you’ve read it, you know that was Susan’s idea, which she feels she got from God.

 

My family would not be intact if not for Susan. My idea was lousy (you have to read the book). Her’s was so far outside of the box I never could have come up with it. Some readers have criticized my portrayal of Susan in the book, apparently not realizing that I wrote it in present tense and therefore it reflects my feelings AT THAT TIME. THEN I thought Susan was weak, which was really my own weakness and fear projected onto her. That is what married couples do. In times of stress, you turn on each other. It’s not right, but we always attack those closest to us.

 

If you want to know how I feel about Susan now, read “Stay Together for the Kids.” And for the small minority of single women who criticize me for putting my child before my marriage, Susan would have done (and did do) the same thing. Only those who don’t yet have kids would understand that. You always put your kids first, no matter what it costs you. Why do those people think the book is called January First?

 

So you know about Jani because of Susan’s divine intervention. Because at the end of the day, it was the two apartments that made our story stand out from others.

 

Jani is not the only child to be diagnosed with schizophrenia. Not even close.

 

But I didn’t know that until other families with severely mentally ill children saw our story and contacted us.

 

It started with a trickle. In between the emails expressing support and the emails offering snake oil cures were emails from other families.

 

After Oprah, that trickle began a torrent that still runs today, three years later. A torrent of families who were going over the edge of the abyss until they saw us. And they went on the internet and found us and emailed us. Some have sons and some have daughters. Some have schizophrenia and some have bipolar. Some have no diagnosis at all (yet) even though they have been psychiatric hospitals. Some are young children. Some are teenagers. Some, their children have grown into happy adults. Some, their children never made it.

 

But regardless of the diagnosis, symptoms, or situation, they all say essentially the same thing: we thought we were alone.

 

And for all of them, the “system” was failing their children.

 

Because it didn’t exist. There have always been kids like Jani. It’s just that forty years ago they spent their lives in institutions. Those institutions have progressively been closed (to my knowledge, there are no long term public hospitals for the mentally ill left anywhere in America). As the previous generation of mentally ill was turned out onto the streets, becoming either homeless or winding up in jail (or usually going in and out of both like a revolving door) a new generation was arriving only to discover that the social services for the mentally ill, as flawed as they might have been in the past, no longer existed at all.

 

But nobody under fifty remembers the state hospitals for the “insane.” And those few left alive who do remember them do not remember kids like Jani because they weren’t around the neighborhood in 1962. They were on the back ward of Camarillo State Hospital (now California State University Channel Islands, serving the Ventura County community).

 

The “community based” care that was promised when the state hospitals were shut down never materialized. It was never funded. What little was funded was progressively gutted as the opposition to taxes began to dominate the American political landscape in the early 1980s. Even though Americans pay dramatically less taxes as a percentage of their income than at any point in American history since the income tax was established, the prevailing narrative is that those damn liberals are trying to get into your pocket. You curse social programs that in reality take up a tiny fraction of the overall US budget…. until you need them.

 

Programs for the mentally ill, generally geared to adults anyway, continued to lose funding and erode until the Great Recession of 2008 killed them altogether. Facing millions (or, in California’s case, billions) of dollars in revenue shortfalls, states began to kill off what remained because, well, let’s face it, families with mentally ill kids don’t make up a very big voting bloc. Politicians are free to cut “non-essential programs” because it plays well with middle class voters struggling to stay afloat.

 

So the current generation of parents with mentally ill kids had nowhere to turn. In California, even residential placement is now handled by SCHOOL DISTRICTS. The Department of Mental Health has dropped even this. What do they do now? I couldn’t tell you. I am not even sure why they still exist.

 

School districts are now required to handle all mental health of a child if there is no insurance. Special education teachers have to do what psychiatrists should be doing.

 

All hospital care is acute care. Acute care of chronic illnesses (because all mental illness are chronic).

 

It isn’t that there are “gaps” in the system. There is no system.

 

Most of the families who wrote to me and Susan were not asking for help. They were just expressing gratitude that we had come forward.

 

But we couldn’t just say “thanks” and leave them alone.

 

They were out there. Their kids were out there. And I could not shake the thought that the only thing between Jani and them was pure, dumb luck. Dumb luck that the circumstances of our life, what we did to keep our family together, attracted media attention.

 

And every time I passed a homeless man or woman raving to themselves on a corner, I couldn’t shake the thought that the only thing between Jani and them was me and Susan. And what would happen when we were dead and gone?

 

And even when we are here, we are not enough. No parent is enough. Susan and I aren’t “heros.” We’ve just been really, really fucking lucky not to have to send Jani to a residential.

 

B was. To Cathedral Home for Children in Laramie, Wyoming. Last week, during a routine bed check, he was discovered bent over in front of his roommate, his pants around his ankles. His roommate’s pants were also down.

 

That was the first report.

 

It took another two days to learn that there was actual penetration. Anal sex. It doesn’t matter what kind of sex it was but I’ll throw that out there because it gets attention. One of the great “taboos” of our society.

 

It was supposedly consensual, not that Cathedral Home ever called the Laramie Police to investigate that. The mother had to do that.

 

I don’t know. Can a 12 year old boy with the mind and emotional capacity of an eight year old “consent?” How did he know about anal sex? I know I haven’t gotten around to having that conversation with Jani yet.

 

B is now on his way home with his mother, out of Cathedral Home for Children in Laramie, Wyoming. It’s a nice place. They got incredible views and you ride horses. But your child might be coerced into sex with his or her roommate.

 

A mentally ill who was kicked out his school district doesn’t just have his bipolar to deal with anymore. Now he’s got this. Born a victim of a defect in his brain, he’s been victimized again.

 

The L.A. Unified School District says they have no placement for him. Well, they better find one. Because Susan and I made a promise to B. Even if it is just him with a teacher and aide, like Jani got for three years. The school district Jani is in did it because we fought for that, because we knew the law. A school district cannot force you into residential placement. They have to provide a free appropriate public education (FAPE).

 

Of course, that is easier to get when an Oprah film crew is waiting outside the school to learn what transpired during your IEP meeting with the school district.

 

If you’ve read the book, you know Jani made a couple of attempts on her life. But we’ve never walked into her bedroom in the morning to find her head wrapped in cellophane, her lips blue, with no pulse.

 

That’s what one of our support group mothers found on Friday morning.

 

Try to imagine what that feels like. You scream, you rip off the cellophane and grab your 9 year old daughter in your arms and she flops like a rag doll. She’s not breathing. You shake her like this is a nightmare and you are trying to wake up. But you are awake. And your daughter doesn’t respond. You feel for her heart and feel nothing. Her body is cold but you don’t really notice that. You can’t take your eyes off her face. She looks dead and in that moment you hate yourself for everything you have ever done wrong. You hate yourself for going to bed the previous night. And you would kill the world to have her eyes flip open.

 

The paramedics are called. It takes them thirty minutes before they leave on route for the hospital. Thirty minutes of CPR to regain a pulse. To the hospital and put on a ventilator. Hooked up an EEG.

 

All lines flat.

 

Presumed brain dead.

 

She wasn’t my Jani and I won’t pretend I felt the same terror. I didn’t find out until this point in the story.

 

And I felt…I don’t know how to put this into words.

 

Another friend and I were talking about something a few weeks earlier. She has mentally ill children too. And she mentioned her fear that, given the odds, one of us in our larger group of parents of severely MI children (of which there are hundreds), one of us, one parent, is going to lose their child to what ever disease they are afflicted with.

 

I hated that and she knew I hated it. I hated because I want to believe, I have to believe, that we can save all our children. The loss of any child to mental illness when it could have been prevented by Thorazine or another anti-psychotic is unacceptable to me. If any child with mental illness that I know dies, then I failed. I failed because it could have been stopped. Medication can’t always do it. Sometimes, our children need to be watched 24/7. If only we are all together, we could trade off, taking shifts, keeping watch.

 

And our children need each other because they are statistically less likely to commit suicide around other children like them.

 

My friend thought it would be her daughter. So when this happened, to J instead, my thought was…”This is it. J is our casualty. J was the one who died, the one we couldn’t save.”

 

Jani was sitting right next me. I grabbed her and hugged her. It wasn’t right. It wasn’t right that my child was a warm body in my arms while this mother had only a lifeless ragdoll that used to be her smiling, happy nine year old daughter.

I failed. I wasn’t able to gather everybody together fast enough.

 

People who have never met us and don’t have an mentally ill child often ask how Jani handles the media. Does she know she’s a “celebrity?”

 

No, because “celebrity” has no meaning to Jani. Fame has no meaning to Jani. Her mind doesn’t work that way. How does she react to film crews? The same way she reacts to any other adult: they’re someone to talk to. She particularly likes to show them her turtles and fish, her favorite stuffed bear “Hero,” her Blink-182 poster (my recent posting of blogs with Blink-182 videos is an homage to Jani, who has a bit of a crush on Travis Barker).

 

She acts like any girl her age would. She likes to talk to them. If you watch closely, you will notice Jani never looks at the camera. She doesn’t pay attention to it. She is too busy talking to the producer who is off-camera and hoping his/her voice can be cut out of the segment, which is hard because Jani wants to have a conversation. There is no coaching Jani. What you see is what you get.

 

Maybe because she experiences hallucinations is the reason the camera doesn’t bother her. Maybe the camera, the lights, the boom mic just merge into the palette along with 24 Hours or 80. She has spent three years learning to ignore her hallucinations enough to be able to function in our world. So perhaps ignoring a camera ten feet away is easy by comparison.

 

Liz Spikol, a blogger at a Philadelphia newspaper who seems to feel I am whoring out Jani to the media, compared Jani to “Honey Boo Boo” (I had no idea who that was) and asked how is Jani going to feel about being the face of child onset schizophrenia when she gets to be an adult.

 

First, Liz, thanks for assuming she will make it adulthood. I really appreciate the vote of confidence. I’m being serious. Liz actually did make me realize that Jani has a better shot than most people with schizophrenia.

 

But I will take a stab at your question because I can tell you what Jani does know now.

 

She knows she has saved lives.

 

She knows because we tell her.

 

I’ve gotten emails from teens and adults who were on the edge of suicide until they saw Jani. And they write that if Jani could fight it, so could they.

 

I don’t share those emails with Jani. I don’t really share anything about what people say about her with her. She’s a kid first, who just happens to have to grow up with a serious mental illness. And she is very much a little girl. Her childhood is preserved. We do no media that would upset Jani’s routine in any way.

 

Jani saves lives. She inspires people, most importantly other kids with severe mental illness.

 

J mother would not accept the brain dead diagnosis. She pushed and pushed and eventually the doctors must have seen something on the EEG, however faint. J was airlifted to another hospital. Over the next few hours, she came off the ventilator. Then half of the brainwaves restarted. She started to twitch and move as autonomic function was restored. The brain was rebooting. But none of us had any idea how long she had been deprived of oxygen. Was there anything left of her pre-frontal cortex? Would she ever be herself again?

 

Twelve hours after being declared brain dead, J woke up. She has no memory of what she did that got her in the hospital.

 

But the psych hospital won’t admit her, even though this is her second sudden suicide attempt without warning in the space of six weeks. Go to bed happy. Wake up and try to die. This is not depression we are dealing with here. This is a sudden command to kill herself.

 

Thought disorder.

 

Voices.

 

Psychosis.

 

But the psych hospital won’t take her because technically, you have to be an immediate threat to yourself or others IN THIS EXACT MOMENT IN TIME. Otherwise, they can’t justify it to insurance or, in this case, Medicaid.

 

The hospital doesn’t want to fight to get paid. They don’t want to eat the cost of inpatient care.

 

We can get Jani directly admitted to UCLA if we have to. Of course, it helps if a Discovery Health film crew took video of me taking her in.

 

So here is my point: Jani has had video cameras watching her, sometimes for months at a time on a daily basis, making sure she gets the care she needs. The public watches Jani.

 

But someone has to watch out for the kids who don’t have cameras and newscrews and books about them. You watch and read about us.

 

And that is fine, but like I said at the beginning, this was never about just Jani. First it was about fighting an insurance company. And then it became something much bigger.

 

Liz, Jani is the “face of child onset schizophrenia” because through a series of events that started back in 2001, she is only one you can see.

 

“Poster children” are not “poster children” for themselves or their own families. They exist to remind you that there is something that needs to be on a poster. They call you to a calling.

 

The media doesn’t always cooperate with what Susan and I are trying to do. I understand. There is only so much you can do in a five or fifteen or thirty minute segment. They don’t give me time to talk about the other children like Jani because one of the Kardashians is up in the next segment and the media assumes you, the viewer, have the attention span of a gnat. For them, it is just content. Even though many of the individuals do deeply care, the network is breathing down their backs and they got three minutes until commercial.

 

I’ve only got time to show Jani’s “face.” But you got to admit, it’s a beautiful face. And if it keeps childhood mental illness in your mind enough that the next time you hear about someone struggling with their child who is just a bit “off,” you will say, “You know, I remember this girl….” then it was worth it.

 

And if Jani’s face makes you come here where I can tell you about B and Jessica and the countless other kids like them, if Jani introduces you to that torrent of mentally ill kids who need you be to their video camera, their microphone, then it was worth it.

 

You know what I hope Jani feels about this when she gets to be an adult?

 

Nothing.

 

Because I hope by the time she gets to be an adult, the world will be a different place where mental illness is treated like we treat the flu now.

 

And I need you to make that happen.

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Have a Cigar

January First has been out now for over two weeks. Thanks to all of you, it just recorded its second week on the New York Times Combined (electronic and hardcover) Bestseller’s List, something I never expected.

 

So I am getting a lot of people telling me “Congratulations.”

 

I know people mean well. They say it out of common courtesy. I get that. But it’s difficult for me to respond. I have to respond. These are people who bought and read the book. Their purchase has put me one step closer to securing Jani and Bodhi’s future after I am dead and gone.

 

Online it is easier. I can just type “Thank you” and move on. That’s the nice thing about the online world. You can kill the conversation whenever you want. Recently, I wished one of my Facebook friends “Happy birthday.” She responded to my single line on her wall by expressing wonder that now that I was a “celebrity” I still took the time to wish people a happy birthday.

 

I know she meant well. She’s a nice person. But I could not think of a nice way to respond to that, so I didn’t.

 

I get that for most Americans, and perhaps the rest of the world, TV appearances and getting a book published equal “celebrity.” Except that I hate the term. It implies that I am a different person than I was before. But I was a different person long before anyone in the public knew my name or Jani’s name. It was the experiences within the book that made me a different person, not the book itself. The fact that I can go into a Barnes & Noble and open a book to see myself on the back flap doesn’t change me.

 

“Congratulations.”

 

It doesn’t quite work.

 

Congratulations for what?

 

What exactly is it that I did?

 

“Thank you for being so honest.”

 

What else would I do? Hide that my daughter has schizophrenia? Kinda hard to do when every aspect of my life is totally defined by Jani (and Bodhi). I have no life beyond them. There is nothing left of whoever I was before Jani became ill.

 

“It’s so great you stood by Jani.”

 

She’s my daughter. I brought her into this world. What was I supposed to do?

 

“You could have sent her away.”

 

What would be the point in doing that? Like I told you, “my” life was already gone. Okay, so let’s say I send Jani away. Then what? Go on with my life? What life?

 

“You could have run away.”

 

I tried that a couple of times. The first time I tried to run away had to be cut from the book for length reasons but it is in the blog “Stay Together for the Kids.” The second was the ultimate escape attempt, which is recorded in the book. I didn’t run away because I am more noble or better than any of you. I didn’t run away because the Universe or God or whatever you want to call it wouldn’t let me. The first time It wouldn’t let me by scaring off the other woman (see “Stay Together for the Kids”). The second time… Well, the second time It directly intervened. And it did. It had to. What are the odds that Jani would walk into the kitchen and speak to me as I about to swallow a second mouthful of anti-depressants? I didn’t save her life. It was the other way around. How many more pills would it have taken to kill me on that June day in 2009? Was that final, lethal pill waiting in the next swallow? Would I have kept going? Would I have vomited all over the kitchen floor? Gone into a seizure? Foamed at the mouth?

 

Did you know most suicide victims never leave a note? It’s true. Only a small minority ever do. Interestingly enough, those few suicide notes are rarely an explanation. You want to know what the most common opening line in a suicide note is?

 

“I’m sorry.”

 

These people are about to kill themselves and they are writing an apology.

 

Why? If they know they are going to hurt those they leave behind, why do they do it?

 

Because it’s a mental illness. It’s called severe depression. You know what you are doing is wrong but you can’t help it.

 

I believe in God. When I drove away that day to die, God spoke to me.

 

No, no apparition appeared to me in the middle the road. No booming voice from a burning bush spoke to me.

 

It was a very quiet voice, inside my head, in the same voice all my internal thoughts are in.

 

“You can’t do this.”

 

It wasn’t a command. It wasn’t said with desperation. It stated as a quiet fact, as if I was simply prolonging the inevitable. It knew I wasn’t really going to kill myself, that I could not just abandon Jani, Bodhi, and Susan to whatever life might throw at them. So why I was pretending like this? This was just a charade, me having a tantrum and raging at the Universe because I couldn’t “save” Jani.

 

And it was right. I was just playing at trying to run away. Because there was no running away. This is Jani’s life. This is Bodhi’s life. This is Susan’s life. This is my life.

 

I had a job to do, even if I sucked at it.

 

Never assume that your “calling” will be something that you’re good at. God, Nature, Universe, Allah, whatever you call It, doesn’t call you to work because you are good at the job. It calls you because It knows you will persevere. It calls you because It knows that in those moments where you feel like you are going to give up… you don’t. It calls you because It knows that if you go over the edge, you’re gonna catch that branch or jagged rock just underneath. Yeah, you might cut yourself to pieces but you will hang on rather than let go. You will live with the pain of what you have done rather than let go and fall to your death. You will break every bone in your damn body. It will let you lay there for awhile, feeling sorry for yourself. But in the end It knows what you know. You aren’t just gonna lay there forever. You are going to roll over and crawl your way back.

 

Because you got a job to do.

 

What is that job?

 

It’s very simple.

 

Stay alive.

 

That’s all It needs you to do. Stay alive.

 

You have to stay alive because one day you will be called upon to help someone else stay alive and you will be the ONLY person who can do that. And they in turn will be called upon to help someone else stay alive so that they in turn can help someone else stay alive.

 

That is how you change the world. You stay alive.

 

I don’t deserve congratulations for writing a book or being on TV. The only thing I did was stay alive. And by staying alive, I help to keep Jani alive.

 

And she in turn helps so many of you to stay alive. I know this because you’ve told me.

 

And in turn you will help others to stay alive.

 

That is it. That is the noblest thing you can do, the highest calling of a human being. Survive. Even if today, yesterday, last week, last month, last year, or your entire life has been one big pile of shit, you have to stay alive. You’re life has value. You keep others alive.

 

That is also why suicides tend to happen in sets. It’s a chain reaction. You fall and the whole chain crumbles without you.

 

If there is one thing I have learned through all of this, it is that EVERY SINGLE life has value.

 

So please stop congratulating me. You can congratulate Jani because she has earned it. She has fought back from a 50/50 prognosis to odds I’d take to Vegas if I could go to Vegas.

 

But I what I really want you to do is congratulate yourself for being alive tonight. And then I want to find another human being and congratulate them on being alive. And tell them to do the same.

 

We’re all part of this chain.

 

And I am hoping that the next time I hear “congratulations” it will be from somebody who’s never heard of me.

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