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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.

 

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34 comments on “Days of Infamy (Guarding the Gates)

  1. Thanks
    Hi Michael,

    My name is Julia and I live in Melbourne, Australia. I just finished your book after starting it only yesterday. I was spellbound. Thank you for your honesty, and for the incredible insight you have given into your family life. I can only imagine what the last decade has been like for you.

    I gave your book as a Christmas present to as many people as a I could after reading about you in The Age newspaper. I think that it is such an important story that so many people should read, particularly because of the exposure it gives to the problems of the mental health system in the USA. I think you are a brave man for taking on so many obstacles in trying to get the right care for your daughter and son. Keep telling your story, we so badly need to hear it!

    Note from Michael: Thank you.

  2. Well said. The change as to come NOW no matter the method!!! Michael speaks the truth society can not wait any longer to do something! Thank you for all you do for all of us parents with kids with severe mental illness!!!

  3. Michael, many great points. I will always be there for you guys and stand up for you guys in the heat of this “battle”. I have read E. Fuller Torey’s books and he seems to genuinely care about the plight of the mentally ill–he had a sister with severe schizophrenia. I am also not afraid about voicing my true opinions, even if it means losing friends. If you notice, I have been unfriended due to voicing out my true opinions on mental health, as well. However, I don’t care, the battle is waging and I am with you guys. We need change, so that our most severely ill can get the rightful treatment that they can possibly get. If I didn’t have a strong advocate, my parents, then I would be lost in a maze of endless paperwork and no service, which, Dr. E. Fuller Torey despises, as well as the SAMHSA. I hope we can make a change, so that when Jani, Bodhi, I, and others grow up and don’t have our parents with us due to old age, that we can take care of ourselves and be healthy and have supports to take care of our parents. Only through this willingness to forgo the fear of judgement for voicing our opinions will we get anymore.

    Keep up the wonderful work, Ruben Rafayelyan

    Never give up, never surrender. (qtd. in Galaxy Quest)

    Note from Michael: Thank you, Ruben. I am definitely counting on you to look out for Jani and Bodhi when I am gone.

  4. Irrational Fear
    As an adult with schizophrenia, I am afraid that people could assume that I am dangerous and try to lock me away. However, I believe this is an irrational fear. I mean, really, where are the people that are going to do this come from? Psych hospitals? No, they tend to be short-staffed and must focus on their patients. The police? Where are they going to take me? I mean, if they don’t beat me to death. Will they take me to jail? Possibly, but if they are rounding up all the mentally ill, jails are going to run out of beds quick and the mentally ill will get kicked to the curve. Assuming they find some sort of crime that the mentally ill are breaking. Maybe they can find something for the homeless mentally ill but what about those, like me, are taking their medication, are mostly functional, and have no history of violence? Honestly, while I am scared of this happening, I am more likely to believe my main paranoid delusion…people want to kill me. I honestly believe that someone trying to kill me will happen before the mentally ill are all carted away. Kinda twisted…don’t you think?

    Note from Michael: Well, fear of being killed (if constant) is irrational as that is pretty unlikely (at least, being killed by a person). Try to think about how people generally die in the world: disease, malnutrition, and war. In the US and other developed countries, chances are you are going to die of good old fashioned old age, Katherine 🙂

  5. Jani
    Why is it spelled Janni in your book but Jani here?

    Note from Michael: I explain that in the book, toward the end, at UCLA.

  6. Your family brings so much beauty to this world
    Jani, Thank you so much for sharing your story with us. You are such a great inspiration! I, like so many people, have my own illness to fight and you have given me so much strength! You are my hero! I mean that. I can’t wait to see your beautiful future. I know you will change the world. Already you and your family have changed so many people’s lives for the better, including my own. Thank you! I hope you and your family have a healthful and joyous new year. Warm wishes, your friend, Dina 🙂

  7. .
    Oh okay. When are you making a next video? I think you and Susan should also make a Vlog on YouTube.

    Note from Michael: Not sure. When we have something interesting to put up.

  8. Vlog
    Can you and Susan make a Vlog on YouTube? with Jani and Bohdi too?

    Note from Michael: I prefer to write a blog instead of record a vlog because I am a better writer than I am a speaker. But you never know.

  9. COLD
    Rather than call anyone, I’m going to let you know that it’s been noted by several people that your children are not dressed appropriately for the weather. There have been many occasions that Jani and Bodhi are in summer attire when it’s 45 degrees out and barefoot while riding a horse. Put their shoes and socks on, put warm jackets on them, dress them for the weather. Forget your camera crew and pay attention to what’s in front of you – two cold children. Perhaps if they’re not cold and understandably uncomfortable, their behaviors would be all the better?

    Note from Michael: How do you know what the temperature is? It doesn’t even get down to 45 degrees here during the day. If it got that cold, riding lessons would be canceled. Try again.

  10. What happen at Sandy
    The kid did not had a mental illness he had Asperger syndrome which is high function I say he just Snapped , why when a tragedy like this happen has to be a mental issue with the criminal? Just because you and I can’t comprehend and never will doesn’t make him insane

    Note from Michael: First, “insane” is a legal term, not a medical one. Second, there is no evidence he had Asperger’s. That has never been confirmed. Third, psychosis in its earliest stages often looks like autism. And, finally, if there is no rational reason for a crime, then that is mental illness.

  11. And one more thing
    To put it out there that he didn’t act insane is that he actually had it all planned out months prior to comiiting the crime , just like the Colorado one when he knew where and when and how … Just like your daughter the Sandy Hook guy had a very high IQ . I see your daughter and to me she looks autistic and not schizophrenic , she has imaginary friends and not conspiracy ideas , she refers to her friends as numbers and days , she grew up in a high stress level home with u and ur wife fighting and not know how to cope with a child who has disorder and pushed for a diagnose that even specialist didn’t feel comfortable with but you and your wife would not take NO for and answer .

    Note from Michael: Conspiracy theories are not necessarily a hallmark of schizophrenia. Schizophrenia manifests differently in every patient who has it. By the way, people with psychosis or schizophrenia are very capable of planning. Thought disorder interferes with the ability to think rationally, not to plan. As for Jani’s diagnosis, doctors don’t just hand out a diagnosis of schizophrenia because someone wants it. They ruled out autism. Every psychiatrist who has ever seen her has ruled out autism. Hallucinations are not a hallmark of autism. But like I said to your other comment, early schizophrenia in children can look like autism. It doesn’t become clear unless you can establish consistent hallucinations.

  12. Pres. Reagan, the gov’t- the SYSTEM
    One of the worst things our past president Reagan could have done was to completely shut down the mental hospitals. Don’t get me wrong, I think overall, he was a good president. Instead, he should’ve reformed the system, as I’m sure it was generally not well-regulated & patients were no doubt mistreated in the wards. What did he suppose was going to happen to the mentally ill after closing down all the wards? They were gonna magically disappear or get better?

    My mom has a mental illness that makes her hallucinate, get paranoid and have delusions. I still don’t know what she has because she has refused to see a Psychiatrist. She spends most of her time in bed or on her couch and seems to do repetitive behaviors. When I take her out & try to engage her, she is almost always in her own world & the only way I can reach her is to discuss religious matters with her-that’s pretty much the only thing she talks about now.

    Recently it was time for her SSI review and she told the interviewer that she owned a property elsewhere and was disqualified from continuing to receive benefits (she now believes she owns a business as well). I tried explaining to the interviewer that she’s delusional & hallucinates but the woman said she needs a Dr.’s note explaining her mental state to show that it’s all in her head. Despite my mom’s OBVIOUS struggle to understand basic questions by the interviewer, she said there’s nothing she can do & has to take her answers as fact (despite repeatedly asking her the same questions & getting vague or half answers) even though she was obviously not in a clear state of mind. She said not only will her SSI be discontinued but her Medi-Cal coverage as well (luckily, later on I got a letter saying her Medi-Cal would continue despite her loss of SSI benefits).

    This is where the gov’t needs to do something to AT LEAST have people like her force-evaluated (as she was CLEARLY not in her right state of mind) since she is completely non-compliant with me because after all, she needs to eat & pay her bills, right?

    I’ve been so frustrated, it’s taken a serious toll on me. The gov’t NEEDS TO DO SOMETHING to help people like Jani, my mom & other mentally ill people.

    I confronted mother in the car & we got into an argument, she screamed for me to stop telling her she did something wrong and I dropped her off at home. This was a few months ago and no change. She now only gets enough to pay her rent (from Social Security Retirement Benefits) not food or other expenses.

    I had an emotional breakdown after this and have, for the first time ever, decreased my visits & phone calls with her. I still love her and will continue to help her with what she needs- shopping, etc but I don’t have a lot of energy (physical & mental) for quality time as I used to. When I see my mom, I often feel heartbreak so I take benzos to numb me up so I can function to help her before going to help her. I’ve at times even had crying bouts in public while say, taking her shopping.

    Note from Michael: Very powerful story. Would you be interested in coming on our radio show via phone and sharing your experience. You would not have to use your name or her name if you didn’t want to. But I think it is important for the public to hear how a lack of evaluation can actually deprive people of benefits, like how your mother lost SSI due to her delusions. You can reach me at michaeljohnschofield@me.com.

  13. I understand what it’s like to have really bad psychosis
    I am age 16 and call the voices Demons and Angels.
    I do have good voices (the Angels).

    The bad ones were the first to appear. It started in the 6th grade for me, I heard them coming from the walls and then some bumping and scratching noises. I thought they were dead people coming after me.

    Soon after there were these two that appeared in my head. They’re names they told me were Mother Russia and I named the other Mikki, but she told me her name was “Mariah”. MR left and Mikki took over and became evil. Then she invited more voices over, they were telling me their names.

    More and more began to appear. They were calling me names, swearing at me, telling me to kill myself and other people. I was hospitalized a couple of times. One for wanting to kill myself an the other for having thoughts of harming people.

    And I know you are not a religious person. but I began to think about going to church and all of the sudden good voices came, and it was just pissing the Demons off.

    THe Angels names were Michael and Raphael, and these are REAL spirits. They’ve been helping me get better, but my symptoms of the psychosis are getting worse.

    I was originally on Meds for Major Depressive Disorder with some psychotics,but they aren’t working. They have not been working at all.

    It’s just a constant battle between the good and evil. I just listen to what they’re both trying to say.

    I’m always paranoid, I think that other Demons are out to get me when it’s night time. I have to pray at night to hope they don’t touch me or talk when I’m trying to sleep. I don’t think I’m human and everything else just seems different around me. I see full blown apparitions and shadows. I’m even starting to drop from school. No focus, lack of motivation.

    And for some odd reason after I saw a few videos of Jani rubbing her hands together, I started to do it after I got out of the hospital on December 13. Only clapping my hands and then doing it. I wasn’t copying her, it just came in my head and now I’m stuck with it. I feel like I do it without even thinking about it.

    And a funny thing is, my brother who is year younger is Austistic, but very high functioning.

    Note from Michael: How can we help? We have a wonderful private online support group for adults with MI, just people like you struggling to make it through the day, but since you are under 18 we would need permission from a parent for you to join. You can reach me or Susan at michaeljohnschofield@me.com or susandschofield@me.com. You want to have as many people around that you trust as possible.

  14. Through the looking glass…
    A brief note… I simply want to say how in awe I am of what an incredibly devoted father you are. I realize this doesn’t mean much coming from a stranger, even if it’s a stranger who can relate to your fight against mental illness on some level (albeit not schizophrenia, but I definitely know the feeling of watching a person be at war with their mind every single day.) My experience was my husband, who lost his fight and committed suicide in 2010. Our daughter was just seven months old. I couldn’t ever imagine leaving her, which is largely what I related to the strongest in your book. Even in the worst, weakest, darkest moments, I, like you, want nothing more than to give her the best, most loving and beautiful life possible. I think you are an amazing, amazing dad for the fierce love you have for your daughter and your refusal to let anything get in between that love for her. Thank you for never giving up. It gives me hope.

    Note from Michael: I am sorry for your loss. I consider your husband, you, and your daughter as casualties of war.

  15. bruised not broken…
    “Casualties of war” is a very accurate depiction… While he physically died, a huge piece of my soul went along with him. It isnt possible to explain to anyone the angst and helplessness you feel as you see someone you love so deeply battle the demons (i do not use the word “demons” in a religious sense, merely a descriptive) inside of their own mind. The worst part is when you see the person they really are, not the illness- it’s a glimmer of light in the dark. YOU know who they really are, not the illness. I would have stood in front of the bullet to get him the help he needed but my footsteps weren’t fast enough. I am profoundly thankful my daughter will be spared any of those memories- i will gladly shoulder them to spare her. In your book, i saw you holding your lexapro, swallowing the pills, and saw myself so many times thinking of my xanax and ambien pharmacy in my bathroom- the parallel gave me chills, hopeless souls, tired souls, spent of hope, trying to escape. Whatever has kept me here, im profoundly thankful for. I hated it when people would tell me “what doesn’t kill you makes you stronger” because i’d think “easy for you to say. You’re not the one with the fucking dead husband.” But over time ive almost come to believe it. Almost. Thanks for writing the book. and Happiness to you and your family.

  16. Family case, please help us
    Hello Michael,
    I have been reading about Schizophrenia and Jani’s case, my family and I think you and Susan are astonishing, amazing parents that do absolutely everything to take care of your beautiful daughter, Jani and all your family. May God gives blessings to all of you and help you guys in the road of life, I really hope mental illness to be solved someday, until then I will try to cooperate as much as I can. I really hope and pray for your lives to be amazing and full of joy, for I know how hard the battle with mental illness is.
    I would like you to help me with my family case: I have a brother who has a very difficult diagnosis; he is currently nineteen years old.
    My brother is now in the Autistic (Asperger) spectrum, and my parents treat him and help him as much as they can, he is antisocial and gives excuses not to have friends, not even friends with mental illnesses. My brother has speech problems and cannot express what he feels and sometimes, what he thinks his thoughts and feelings; he is hyperactive but never wants to participate in events and hates social interacting (reunions, parties, etc).
    With my mother and father, speaks too much and obsessively, and gets too anxious while he does that (Example: My brother gets obsessed with airplanes topics, so he says he wants to have an airplane company and memorizes everything about airplanes, such as numbers and data, and he tells all that to my father and like a test, asks my father “What is the number of this airplane?” and my father answers “586”, but if my father forgets and doesn’t answer, my brother gets in a huge psychotic state, he starts screaming and punching and he either injuries someone or self-injuries)
    He is all the time with my father and never wants to let him go, he even goes with my father to his workplace and sometimes doesn’t let him work. Why? Because the main problem with my brother is his aggressiveness, he is very, very violent.
    Sometimes his aggressiveness can be triggered but sometimes comes out of the blue. His violence is extreme, he has no limits in his psychotic state of violence, he also has obsessive-compulsive symptoms such as getting obsessed with some topic or a person (can be an actress, person known to the family or so) and after getting really obsessed with this person, he starts hating that person and wants that person out of his life and if he sees that person, he wants that person out as this person triggers his aggressive attacks.
    He started getting violent at the age of eleven, we battled with him and all his aggressiveness and psychotic states until he turned nineteen, when my parents were too tired, extremely worried and frightened of my brother, and they felt the need of hospitalizing him.
    When they hospitalized him and a personal psychiatrist attended him, he asked for a lot of money as well as the clinic, they asked for tons of money and they promised to stabilize my brother…But they didn’t.
    My brother was returned home after a month hospitalized.
    When my brother got back from the clinic, he was in Klonopin (2 grams: morning, afternoon, night), Zipasidone (or Geodon, Zeldox) (180 grams) and Zolpidem (1 pill per night).
    All these medicine failed.
    And produced adverse effects in him such as titanic muscular pain, he was all sedated/ knocked out, he would talk too much and repetitive, exaggeratedly and he’d talk while he was asleep and he was in huge anxiety.
    A new psychiatrist decided to take away the Geodon because it produced him acceleration, changes his doses to:
    a. – 2 grams of Klonopin (morning, afternoon and night).
    b. – 10 grams of Hadol
    c.- Valproic Acid (1 gram) morning, afternoon and night.
    But his aggressiveness and violence is still there, he is still anxious and aggressive and he doesn’t calm down, he keeps yelling and even when he calms down, is like he gets all anxious and looks like he is struggling with himself, he can hit but most of the time he is yelling, crying and struggling with himself really hard and my parents and I don’t know what to do.
    Please help us with my brother, you guys are a great family and have been through problems and found the way, you guys are amazing and a life example, truly, thanks so much for sharing your case and helping all of us. Please, you guys know this case; have been through it with Jani, could you please help us find a solution to this living hell? I know exactly how you and your family feel, we are going through the same.
    My parents, for my own safety, had to split and my dad is taking care of my brother at my grandfather’s house while I am in our apartment with my mother. I am fourteen years old and my brother is nineteen.
    Thank you so much and please help us, we are desperate for an answer, God bless you all and we will keep you guys in our prayers,

    Note from Michael: Grace, you can reach me at michaeljohnschofield@me.com. Your father can also reach me at that address. I need some additional information to see what I can do. One thing I might be able to help with is if your brother is obsessed with aircraft that is actually one of my passions. I know any aircraft in the world. As for medication, I need to know where your brother is so I can research what resources are available.

    Update: Your IP address tracks to Lima, Peru. I don’t know much about mental health in Peru. Does your father speak English? My Spanish is not so good but I will work on it. I am also thinking thorazine.

  17. my brother’s case
    Michael, I already send an e-mail to your address. Thank you so much for everything :)Thank you again for trying to work on Spanish hahah, don’t worry I can use my English
    Again, thanks

  18. Mental Health
    Michael, thank you so much for this blog post, and for all you’re doing to bring mental health issues to the forefront. I have been following your “journey” now for several years and loved your book. My heart goes out to you and your family. // I live and work close to Newtown, CT where the recent massacre took place. I am very shaken up by this tragedy, as many people are. I read your letter to Obama and was inspired to use it as a template to write to him and my senators as well. Thank you so much for that, as I just didn’t know where to start myself. I want to get involved with the mental health movement as I truly believe it is critical for our society to address. You are a pioneer, and you ARE making a difference. Thank you!

  19. 2013
    Can you make an update video with Jani and Susan for the new year?

    Note from Michael: We will consider it.

  20. So many important points!
    Hi, Michael–

    I read your book yesterday–just started, and couldn’t quit. I had a bad dream about it during the night, too. I can’t say how emphatically I agree with your last points, ” 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.”

    I lost my husband, and my daughter her father, to the failure of our society to provide real care to the mentally ill. He has Bi-polar I, with psychotic manic episodes. He didn’t die; I had to get a divorce when he started turning his anger and aggression on our three year old, not just me. He vanished for fifteen years, and when he recently surfaced (manic, of course) it turned out that he has just abandoned two more little sons. He isn’t a bad man, just a sick one–and if I could have forced him to get help, to stay on his meds, to go to the hospital when he was sliding down that slippery slope, maybe none of it would have happened. He was a brilliant, funny, loving man, and he loved our little girl dearly–he wouldn’t have chosen to leave her if he’d been in control of his own mind and emotions.

    My deepest fear was that our daughter would inherit his illness–thus far, I’ve been spared that. I have such respect and empathy for what you and your wife are trying to accomplish, for your daughter’s sake, and that of all of us. And your comments about how mass shooters, used to be innocent, loving little children, really resonate with me too. Thanks for your book, and for being a voice for the voiceless.

  21. Yes
    Hi Michael,

    Yes, I would love to discuss this issue via phone on your radio show! Just let me know.

    I’m sure I’m not the only one dealing with this situation. At least you can bring a child in- they usually don’t have a choice, but it’s hard to get an adult help, especially when they look & seem to speak normally at times.

    The good thing with Jani is that you can become her conservator so when she reaches 18, you can continue making decisions for her because she has a solid history of MI, but what about someone like my mom who barely has much history except for a few hospitalizations & deals with MI silently- she is very careful not to end up in hospitals anymore because she fears being committed to an institution, even though I’ve told her I won’t let that happen & I just want to get her help & others tell her that too but I guess that’s part of the paranoia?

    Thank you for letting me have a voice as no doubt change needs to happen for MI.

    Sasa

    Note from Michael: Sasa, write to Susan at susandschofield@me.com. Conservatorship has to be renewed every year and if the person has even the slightest sign of competency you can’t get it.

  22. Your family’s story has really touched me. I am currently struggling with so called “Bi-polar with psychosis” and I havent even reached 16 yet. The past two years of my life have been horrible, I’ve been in and out of hospitals 10+ times and at two different resedentials within a 2-year period. I’m at a loss,…I don’t know what I’m really looking for, maybe some clarity or something. My worst fear is that I’m in the early stages of schizophrenia, and many doctors have told me thats a possibility. The thing is my parents think I have control, which is partly true…sometimes I do. But other times I cant get a clear head and am really impulsive.But I agree with what your saying about America’s Mental Health system…its jacked.

    Note from Michael: Rylie, I wish you were 18. Then we could invite you into a wonderful private Facebook group for adults with MI. What makes you think you have the early stages of SZ? The fact that you are aware of your mental health gives you a HUGE advantage.

  23. Hello
    I just finished reading your book last night and what an amazing adventure you take your readers on. Not only have you given us an insite to Jani’s world and a better understanding to Mental Illness but also to what great parents you and Susan are for not just Jani as problem child but seeing her as a child, your beautiful child who has a problem. You are great advocates for her to get the help she needed and not back from the doctors.
    Back many years ago it was unfortunate that society saw doctors as “GOD” like people and took there every word, never questioned and always followed. Times are changing and our research methods have increased to allow us to be more informative in the action and care we want for our children. The more people read about your story the more they will take action and fight to get the apporpiate care for their children.
    In regards to the government, it is sad that they go from one extreme to the other and no in between. I worked as an educational assistant up here in Canada. As much as I am a believer that every child deserves the right to education, but it has to be the right education. Most schools here all children are intergrated in the main stream clasroom. This works for some, but not all and by taking away specialized classrooms we are failing the children who not cabable of handling a big classroom setting. This also applies to the “Mental Hospitlals”. Yes back in the day they would admit anyone who they did not understand or want to deal with.So instead of finding out what doesn’t work and fixing it the government takes it away from everyone and now there is a lack of help to those who really need it. It would be a wonderful world if they looked and the aspects of the good and the bad and balanced between the two. If they would have realized that years ago, Jani wouldn’t had to wait 6 years to find a diagnosis and help treat her to be the beautiful girl she is.
    Thanks to you, society will slowly see that we shouldn’t shun mental illness but instead embrace it and love it and the indvidual it affects. Don’t be ebarrassed about that fact and try and hide it,but get the proper help for your loved one just like and yourseld and Susan.
    Thanks for the wonderful story and I am looking forward to reading about your fight for better awareness, diagnosises and care for those with mental illness and the wonderful progress that Jani is making.Take care

    Note from Michael: Thank you, Suzanne. Very well said.

  24. I just finished reading your book. It had me captivated. I also find this post fascinating as I struggle with rapid cycling bipolar II. I live in Canada and the system here is a bit better but still messed up. I had huge problems all through my teenage years to the point where I wanted to kill my mother. She put locks on all of our doors because she was actually afraid of me. I finally got control over my angry impulses when I started taking anti psychotic medication a couple of years ago. It’s a huge struggle every day but I work as a personal support worker part time. If they ever knew I had a mental illness I would get fired. I’m lucky enough to see a psychiatrist weekly paid for by the government. That is definetly not the norm here. Right now I am really depressed and have had to slow everything down because on my days off I can barely get out of bed. I’m scared one day I will end up homeless and raving on the street corner or on social assistance and impoverished. I have been so inspired by your journey and wish you so much goodness.

    Note from Michael: Mel, if you are on Facebook we have a wonderful completely private invite only group for adults with MI. Just people like you, trying to make it through. If you are interested, you can email me at michaeljohnschofield@me.com. The group is completely secret so no one will even know you are in it.

  25. I just read January First… had to leave a note for you – I am in awe of your dedication to your daughter, to your family. You and your wife are truly amazing, I don’t know where you find your strength. My daughter was in a car accident, resulting in a TBI. We are lucky she is alive, and have dealt with the aftermath of it. I know what hell is when you are staring at the unknown, but we have come a long way. Jani is so very very lucky to have you and Susan as her parents. Many would cave under the pressure. You have stuck together and found a way to make it work, to give her a genuine life. Such a gift.

    I look forward to reading your -progress- as you travel Jani’s journey.

    I live in CT, hard to fathom something like that could happen in this state.. but it can happen anywhere…. Mental Illness can happen anywhere. You are so right on all points made regarding this issue.

    Note from Michael: I don’t think of it as “finding strength.” I just do what I have to do. It’s my job.

  26. Thank u for sharing your story. I am right there with u on how the adult mentally ill was once someone’s beautiful child. Growing up I had a very close uncle that was schizopraic and a sister that was bipolar. My parents know first hand how there is no help out there for the mentally ill. She was in and out of the state hospital and other hospitals. There is just no family support. My sister ended up taking her own life. I am now a mom that is finding out how our great system works for children with issues. I have a son with ODD, conduct disorder, or depression. They are not really sure. He is 13 years old and has 90 days of juvinile detention hanging over his head. I don’t understand how prison will help a young boy that is having some problems. He is curently taking wellbutrin and going to therapy. It’s like they just look at the parents and to see what they have done wrong and I get to pay fines for my child having a chemical imbalance. He did break the law and I understand that. He took a car then took an electronic thing that belonged to one of the probation officers. He spent 3 night in juvie and now he has been sentenced to probation, community service and fines for me (about 700$). Really?!? What does that do to help the situation? Anyway I also have a step-dgt that has been diagnosed with OCSD we are taking her to counseling and she is taking Prozac. We have had to do extensive behavior therapy with her. She likes to control, manipulate and play divide and concure with in our household. I also have a niece (my sisters dgt) that at age of 6 started to see things. She is now 11 and still see thing at times. They think it is post traumatic stress. She has not had to be medicated yet. Ok I didn’t write all of that for sympathy or to try to show how much our family has to go through. I just wanted to let u know how I can relate. I am a Registered nurse and years ago worked as therapeutic foster parent so I have a few resources to draw from. I just want my kids to grow up and be able to funtion in our society. So me and my husband feel like we are on a daily fight for our kids taking them to counseling, making sure they get their meds, behavior modification in our home, paying fines and trying to keep our jobs.

    This was the first blog of yours that I have read. It really touched my heart. Thank u for being so honest about your feelings. I have always been interested in mental health and have watched janis stories. I am about to read some of the other posts here and am eager to read your book. To you and your wife I just want to say keep being strong.

    Note from Michael: Tonya, please email me at michaeljohnschofield@me.com. If nothing else, I can offer you a group of parents who are going through the same thing you are. We have two wonderful totally private online support groups by invite only.

  27. Be the Leader and carry the Torch Michael!!
    No Soldier can succeed without a strong & forceful leader. I think you could be that leader! Keep fighting & keep the anger burning, without that they are all doomed. God Bless & Thank you from all the children of the soldiers fighting in this war. Its just the beginning you know. xox to you, Susan, Jani & Bodhi

  28. Hi,
    I’ve been reading bits and pieces of Jani’s journey through video’s and your blog. I myself am bipolar. I also have a son who is fourteen who is bipolar I among other diagnosis. I am currently in a battle to get him services that he needs that the insurance company will not pay for. I have gone to the Governors office for help and got a grant for six months for in home intense therapy. We also just got him into a special school so that he can have more one on one attention to help keep him on track. He is just coming off of Haldol which made him completely evil. He is on a new med called Latuda. I would love to be part of your private chat, if you could tell me how to do so I would appreciate it.
    Thanks
    Lisa

    Note from Michael: Lisa, we have two private groups, one on Facebook and one in Yahoo. You can email me at michaeljohnschofield@me.com.

  29. Keep fighting.
    Hi Michael. I read a few of the posts on your blog after seeing the Oprah special. I have not yet had a chance to read your book, but I absolutely intend too. I will be a “soldier”. I will be one of the best damned “soldiers” you have ever seen, even if I have to fight from the darkest of the shadows. We need to make the issue heard. We need to fix something that the government has no interest in. It falls to We The People. I am 21 years old. I can’t relate like I wish I could, because I do not have Schizophrenia. In a way I can relate though. It is people like the one on here named “Cami” who give people like myself a bad reputation. I have Asperger’s Syndrome, and it is something I have done countless hours of research on. I wanted to better understand what I was dealing with. The reason I say “Cami” gives people like myself or your daughter, a bad reputation and name? They say things without understanding what it truly is. I am proud of you, I will support you in this fight any way I can, and I admire your will and determination. You restored just a little bit of my faith in mankind. Thank you

    Note from Michael: Cody, we are in the process of becoming a non-profit and we need help on the ground and your age is exactly the demographic I want to target with our message. Email me at michaeljohnschofield@me.com.

  30. Letter
    Have you received anything back from the white house regarding your letter yet?

    Note from Michael: Not a word from any of the of the politicians I wrote to. Nothing from the office of the President. Nothing from Senators Feinstein and Boxer. And only a form letter talking about gun control (which I didn’t bring up) from our Congressional Representative Buck McKeon. I wrote back to him asking for an actual response, not a form letter, and never heard from him again. I also submitted an edited version of this to the op-ed of the LA Times, who of course first publicized our story in 2009, and they rejected it.

  31. high functioning schizophrenics
    Hey Michael,

    I’ve been following your blog for years. I just read this article in the New York Times about high functioning schizophrenics that made me think of your family and Jani. I don’t know if you’ve seen it, so I thought I’d post a link. Obviously, the author and others mentioned in the article are very fortunate to be so successful in spite of their schizophrenia, but it gave me hope for Jani. I hope it brightens your day. http://www.nytimes.com/2013/01/27/opinion/sunday/schizophrenic-not-stupid.html?src=me&ref=general

    Note from Michael: Thank you.

  32. You guys inspire me!
    Hi Michael and Susan-

    When I first saw Jani’s story I was incredibly fascinated. Your level of commitment and strength is beyond inspiring! I recently watched “Born Schizophrenic: Jani’s next chapter” and just couldn’t stop smiling due to how well she is doing! She has such a beautiful spirit!!

    I recently purchased the audiobook of January First. I am on Chapter 10, and I HATE when I have to turn it off!!

    Keep in mind there are more people who admire both of you than there are people judging you. People have no business to judge you, they only see bits and pieces from television. They don’t live your life on a daily basis. You guys are such amazing parents, and Jani and Bohdi could not have been born to better fit parents!

    Thank you for sharing your family’s struggles with the world. Thank you for being such an amazing inspiration!!

    Note from Michael: Thank you, Melissa.