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.