Month: May 2010

This is My Message to You: Ni dyar'izuba, Rizagaruga, Hejuru yadju, Nduzaricyeza ricyeza

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Blog title is Kinyarwandan. It means “When will the sun rise again? Who will reveal it [to] us again?”

 

In the late summer of 2000, Ottawa police were called to a local park, where they discovered a disheveled man on one of the park benches. He had been drinking and was slipping into a coma.

 

He looked like a homeless man who had had one too many, except for the empty bottle of anti-depressants by his side.

 

And the Canadian Army ID card in his wallet.

 

Only then did police realize that they had interrupted a suicide attempt to fatally combine alcohol with an overdose of anti-depressants. And only then did they realize that the disheveled man trying to kill himself that afternoon on an Ottawa park bench was General Romeo Dallaire.

 

For most of you, certainly if you are American, Dallaire’s name probably won’t ring any bells. Yet the reason he was trying to kill himself was because of feelings of guilt and inadequacy.

 

What, you ask, could he possibly have done?

 

Nothing. And that is what he hated himself for.

 

Romeo Dallaire is a hero. Romeo Dallaire tried to save hundreds of thousands of lives. Yet the men and women who tied his hands behind his back were sleeping just fine the day that Dallaire tried to kill himself. He had nothing on his conscious because it was not his fault he could not save 800,000 people. Yet he took on the guilt that belonged to others. He took it on because he, unlike his superiors, was there to see what happened.

 

General Romeo Dallaire was witness to a genocide that closed a century of genocide that began with the Armenian Genocide by the Turks in 1915 and continued with the Holocaust in World War II and the Killing Fields of Cambodia in 1975. The technology of warfare made genocide just so damn easy in the 20th Century.

 

In 1994, Dallaire was assigned as commanding officer of the UNAMIR, or the United Nations Assistance Mission for Rwanda, and from April 6th until June of that year watched helplessly as militant Hutu militias and the army of Rwanda slaughtered approximately 800,000 to 1 million Tutsis and moderate Hutus in what would become known as the Rwandan Genocide.

 

The UN had assigned the UNAMIR peacekeeping force to Rwanda to oversee the implementation of the Arusha Peace Accords between the Rwandan Government, dominated by Hutu President Habyarimana since 1973, and the Rwandan Patriotic Front, made up of rebels fighting for the Tutsi minority and led by current Rwandan President Kagame. UNAMIR was assigned over the objections of Rwanda, which at that time had a seat on the UN Security Council, and the United States which, still reeling from the death of American soldiers in Somalia the year before, refused to commit any troops to the peacekeeping force. Eventually, the UN dispatched a force of 400 peacekeepers, made up of soldiers from Canada, Belgium, Ghana, Tunisia, and Bangladesh. With the exception of Canada and Belgium, all the other countries had (and still have) most of their populations living below the global poverty level. Belgium was a former colonial power that had occupied Rwanda and typically the UN does not allow former colonial powers to serve as peacekeepers in countries they once colonized, but the UN was so desperate for troops that they had no choice but to accept Belgium.

 

The genocide began when President Habyarimana’s plane was shot down as he returned from signing the Arusha Peace Accords with the Rwandan Patriotic Front (RPF). Within hours, Hutu militias, some armed by the Rwandan Government Forces (RGF), others with machetes, took to the streets, encouraged by militant Hutu Power radio, and began slaughtering every Tutsi they could find-men, women, and children.

 

Dallaire’s UNAMIR peacekeeping force was hampered by strict rules of engagement which prevented them from firing unless fired upon. Yet, when ten Belgian soldiers protecting the Prime Minister were captured and killed, the response of the UN was not to send more troops but to order UNAMIR back. To this day, Dallaire is still blamed in Belgium for caring more about the Rwandans than the European soldiers under his command.

 

By the way, the Belgian soldiers were tortured. Their genitals were cut off with machetes and then shoved down their throats. Yet the Belgian government’s only response was to pull its remaining troops, leaving Dallaire with only a handful of peacekeepers to stop the slaughter.

 

Dallaire begged the UN Security Council, and specifically the Americans, for 5,000 additional troops, which he felt would be sufficient to protect the Tutsis from the slaughter. The UN and the US denied his request, citing safety concerns, despite Dallaire’s urgent, daily messages detailing the rising death toll. It takes a lot to kill nearly a million people in a little over sixty days, meaning that if we average the death rate out, over 13,000 ethnic Tutsis and Moderate Hutus were being killed every day.

 

And a force of 5,000 American special forces could have stopped it. But the Clinton Government wouldn’t even publically use the word “genocide” until late May, by which time it was nearly over.

 

Ultimately, what saved the remaining Tutsis, and Rwanda itself, was the RPF. The rebel group finally took the capital Kigali in mid-June, which ended the genocide.

 

I am not going to call the treatment of psychotic children in the United States genocide. That would be too much. But I bring up the Rwandan Genocide because there are similarities. Not in the death toll, of course, but in the way that those in power, the bureaucracy, failed to protect those who could not protect themselves. The UN and the US twiddled their thumbs and hid behind rhetoric while hundreds of thousands died.

 

Mental illness itself is Africa, and nobody in the West really cares about Africa. It is too far away for most of us, a dark land that we visit only in the imaginations of Hollywood films about “psychotic” killers that make us scream with terror and delight.

 

NAMI walks and BringChange2Mind are the equivalent of Live Aid. Useful for bringing awareness to something you would ordinarily never think about, but those that attended the Live Aid concerts in 1985 were already the ones most likely to care about African famine. When I attended the NAMIwalk in my area, I saw only those whose lives had already been touched or affected by mental illness… and vendors trying to turn a buck. This means that NAMI is preaching to the choir. If only those who are affected by mental illness participate in the NAMIwalks, then nothing will change. We are just recycling the same old slogans we already believe in. And Glen Close’s BringChange2Mind is a much smaller version of Bob Geldof’s Live Aid, using celebrity to grab the attention of the public for long enough to say “Oh, there’s Glen Close talking about mental illness” before they move on to “Dancing with the Stars.”

 

The Hutu Militias are psychosis itself. It kills indiscriminately without concern for your age, gender, or station in life. Sure, you can buy it off for awhile for a few thousand Rwandan Francs or a wad of American hundred dollar bills, but there is only so long you can keep it at bay. Eventually, it is going to come for its victims with a machete to the mind.

 

The Tutsis are our children who suffer from psychosis, whose lives are cut apart by its militias. It is one thing to look upon Jani and think how cute she is. It is another to still feel that way when she attacks you or bites you. Children tend not to be so cute then.

 

And when the enemy of psychosis attacks, and our children are fighting for their lives, the “peacekeepers” abandon them, concerned, like the Belgians and the Americans, more with their own safety than protecting the innocent.

 

The UN is, of course, the Department of Mental Heath: detached and unconcerned for the slaughter on the ground. All they care about is that, they like the UN, get their funding. Like the staff of the General Secretary, the DMH nods sympathetically when you radio from Rwanda desperate for help to stop the slaughter of your child’s mental life, yet when you ask for help, the offer only excuses.

 

And the agencies that the DMH contracts with to carry out “services,” such as the Santa Clarita Child & Family Center, are the “peacekeepers,” undermanned, underfunded, underequipped, undertrained, and ultimately unwilling to open fire “unless fired upon,” at which point they will just call the police.

 

The point of all this is that agencies that provide mental health “services” like Wraparound and Full Service Partnership make the same mistake that the UN made in Rwanda: they assume that their simple presence will be enough to stop the slaughter. Like the UN and the Pentagon, they write up detailed plans for our children. They love to set “goals.” But they provide no way to meet those “goals.”

 

It has been said that “war is diplomacy through other means.” In the end, you cannot stop a war, you cannot save innocent lives, unless you are willing to pull the trigger. Plans and goals mean nothing unless you are willing to carry them out by whatever means necessary.

 

So to the parents of psychotic children who have not sent your children to residential, I salute you. You have kept up the fight against overwhelming odds. You may not be winning, but at least you are letting the psychosis know that you will not let it take your child without a fight. You will open fire if you have to.

 

The 800,000 Tutsis and moderate Hutus are the children and adults we have already lost to mental illness. And it wasn’t the stigma that killed them. It was the fact that there were no boots on the ground to shield them and protect them. The ten dead Belgian soldiers are those who had nothing personally invested in mental illness but were willing to pay the ultimate price for what was right.

 

The Jani Foundation is not another speaker on the floor of the UN. It is not another recycled speech about stigma and the need for mental health awareness. We are building an army to fight back against psychosis so that those children that suffer from it can live happy, fulfilling lives.

 

Dallaire, now, among other things, an advocate for veterans’ mental health, wanted to kill himself because he felt powerless. I have no doubt that every day he spent in Rwanda during the genocide, he wanted to pull the trigger, but he was badly outnumbered and under the command of a body with no spine to do what had to be done. I know that feeling. I know what it feels like to be powerless in the face of a much more powerful enemy. I too have had my moment on the park bench. Everyday I still struggle with the desire to give up.

 

Jani is not getting better. Everybody who is left around her has noticed how she will sometimes look up, her eyes appearing to follow something circling above her head. When I ask her what it is, she says it is the “Nothing Family,” which according to her are dogs. Yet she cannot explain how, if they are dogs, they can fly. She believes she is in Calalini and insists she rode Great Danes to get there (which is really wherever she happens to be) even though we drove to that destination in our car. When she spills water on herself, she is back to ripping off her shirt, even if it in public. Since she is approaching eight, we desperately try to discourage this (she will also strip naked immediately after coming out of the pool because she is “cold,” regardless of the fact that there are people around. You talk about stigma? My daughter isn’t even aware of her surroundings enough to even acknowledge the embarrassment of nudity in public, let alone give a damn about stigma. The other day she spilled water on herself in a Chuck-E-Cheese and tried to take off her shirt. The spill was small, yet when I tried to stop her, she screamed and dropped to the floor. She hasn’t gotten even the slightest hint of breasts yet, thank God, but unable to get her to put her shirt back on, I ripped off my own shirt and put it over her. I realize Chuck-E-Cheese has a “No shirt, no shoes, no service” policy but I would I go topless than Jani. I too have no time to give a shit what other people think. When she does this, I try to get her to the car or a private place as quickly as possible. An hour later, when her shirt was bone dry (it was a warm day), she still insisted she could feel wetness and wouldn’t put it on so we could go into the grocery store. Instead she got out of the car and lay down in the parking lot. I tried to get her to get up (she is too heavy now for me to easily lift and I would fear accidently dropping her to the concrete). When a car came, I turned my body toward it to try and shield her if it struck. I would rather it hit me than her, which in practice is stupid because Jani needs me 24/7, except when she is asleep. She won’t even go to school without me, although she no more listens to me than her regular teacher. Functioning on all levels is dropping.

 

Yesterday, she got water on herself again. We were at the car, a private place, so I told her she didn’t have to wear her shirt. It was okay. But it wasn’t okay because she insisted on putting it back on, even though I kept telling her she didn’t have to. Then she hit me, threw everything in the car she could get her hands on, and finally ran off down the street. Terrified, I was ready to call the police, afraid she would run into traffic and get hit by a car. The more I chased, the more she ran. Eventually, I got her to agree to stop before the busy cross-street if I stopped chasing her (I’d actually had to get in the car to give chase). I waited, engine running, taking to her from the other side of the residential street, trying to calm her and distract her. I asked if she wanted to go to the store to get hush puppy mix (which she wanted for dinner). She suddenly stood up, a smile on her face, and said, “Yes,” crossing over to the car and getting in like nothing happened.

 

Yes, we have few interns left, but I am not sure it would make any difference even if the larger program was still intact (although they remind me of UN peacekeepers who fled the field of battle once they realized they actually had to fight). I am the only one she wants, despite the running away (which she has never done before). She will not allow me any break. It is like she is clinging to me as her only remaining link to our world. I am Romeo Dallaire, desperately trying to keep the psychosis from killing Jani.

 

And for now at least, there are no reinforcements coming.

 

It is just me.

 

Of course, I’m just talking, too. I have to. I have go back into battle tomorrow.

Still, there is still light sometimes, even in the darkest of nights. Yesterday, on the way home from school, after that incident where she ran away from me, Bob Marley’s “Three Little Birds” came on the radio. Needing something, anything, I started singing along, enjoying the feeling of the sun coming in through the driver’s side window.

 

Then I realized Jani was singing along with me.

 

Thank you, Bob Marley.

 

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Won't Stop to Surrender

First let me say that I have received hundreds of emails since “Born Schizophrenic” aired last week on Discovery Health as part of “Psych Week.” Several emails refer to me or my family in the third person, probably because the writer assumes that given the media contacts at the bottom of my website page that I have somebody vetting my email. I don’t. It all comes straight to me. I read every single email I get, but due to time constraints I can only respond to those who write to me sharing their own experiences with a child or other mentally ill family member. So if you sent me an email sharing your own experience, or the similarities between your child and Jani, or asking me for help, I promise I will respond. It may take me several weeks, but I will respond. I also have to respond to emails in order of importance. One of the things that has surprised me the most is that I now get emails from people, both parents of mentally ill children and mentally ill individuals themselves, who are in crisis. I am not a trained psychologist or therapist, but I can’t ignore such emails. Today, for example, I got an email from a teenage girl who told me that she has been diagnosed with depression but that she also hears voices. She told me that the only reason she was even emailing me was because she was too stoned at that time to censor herself. Of course, I immediately wrote back from my Blackberry, despite Jani pulling on my shirt, wanting me to pay attention to Wednesday the Rat,  telling this girl to tell her doctor the truth about what she is experiencing and, failing that, to take herself to the nearest ER and tell them. Will she reply? I doubt it. I have gotten emails like this before and I never get a response back. My point is that if you email me asking for help, I am going to try and help you. Despite the media attention Jani has gotten, we have no more resources than anybody else out there dealing with mental illness. Even after the LA Times, Oprah, 20/20, and now Discovery Health, nothing has really changed for us, except that Jani occasionally gets recognized in public by complete strangers. But we didn’t do this to get help. By the time our story became public, we already knew there was no help out there. We haven’t told our story publicly to gain help or find a solution. We did it to get the word out, to bring attention to a problem that exists, a problem that is much larger than one child or one family.

 

Fame only matters if you do something with it.

 

With each media appearance, what we have gained is not money or help or cures or answers. What we have gained is other families and other mentally ill children. With each new round of public attention, we find more families out there who are going through the same thing we are. And rather than simply commiserating, I have attempted to gather them together, both to provide support to each other but also as a political force. With each television or print appearance, it has become more and more clear that Jani is not unique or an aberration. Rather, she is the tip of an iceberg of families and children suffering in silence. Jani is the 10% of the iceberg you can see above the water. I want to turn the iceberg over and show the world the other 90%. Because the more of us there are, the less we can be ignored. Now, when you go into your next IEP, you know there are (based on the current membership in our online support group) nearly one hundred other families behind you. When you get yet another visit from CPS, you know there are a hundred other families who have gotten those same visits. And when everyone is telling you to send your child away, you will know that there are one hundred families who have faced that same choice.

 

I say this so you will know that they can’t bully you anymore. They can’t make you feel like a bad parent. They can’t pressure you. They can’t deny you what you need for your child or children. Slowly, the failures of the child mental health system in America is being revealed publicly. Slowly, the façade, the lie, that your child is unique is being destroyed. Slowly, we are forcing society to understand that our children are not “bad kids.” Slowly we are forcing them to understand our children have a disease. And slowly we are forcing them to see that our children, no matter how disturbed or violent, have worth. Slowly, we are forcing the world to see our children inside their behavior.

 

We gave up on getting “help” from the mental health system long before our story ever became public. We accepted that there was no help out there, that no one was going to save us.

 

So we decided to do it ourselves. We decided to find every family like ours and put them together, creating a new system, a working system, that would rise up through the cracks of the broken mental health system.

 

The Jani Foundation is underway.  We already have a Board, an executive director, division directors, and a mission statement: The mission of the Jani Foundation is to provide services to families and their children who suffer from mental illness and autism through a network of parents, volunteers, and staff to provide in-home assistance, educational and therapeutical programs, and respite care that assists families in staying together as a family unit in a safe and supportive environment.  Now we are working on specific goals. Soon a website will be up. Soon we will incorporate and file for non-profit status. Soon we will begin recruiting. If you want to help, I welcome you, but know what you are getting into. Jani’s intern program ended because of safety risks to the interns (which was also the same reason Wraparound wouldn’t help us). Well, if you can’t stand the heat, get out of the kitchen. If you aren’t willing to put your personal safety on the line to help mentally ill children and adolescents, you are in the wrong field. This is a war and you are enlisting to fight against childhood mental illnesses. If you are not willing to put yourself in harm’s way to help these children, then don’t go into this field.

 

America, I refuse to accept your mental health system for children. So Susan and I are building our own, with our own network of psychiatrists, psychologists, therapists, and staff.

 

And part of that means trying to help people in crisis who email me, even if have no concrete way of helping right now. By God I am going to try.

 

I got many emails asking me if things are “better” now. They weren’t sure when the Discovery Health special was shot, so they were hoping that things might have improved. The special was shot in February and March of this year, so it is very recent. I understand the question. It is a natural human desire to hope that difficult stories end well. We all hope for better. I don’t begrudge anyone who asks me that.

 

The answer is “It depends on how you define ‘better.’” Jani is no more functional than she was when the special was shot. In some ways she is less functional. She is becoming less and less functional in school, even though she only goes an hour a day and it is after all the other kids have gone.  She refuses to do any work at all, no matter what the reward is. That one hour used to be a break for me but now I have to go with her every day or she won’t go at all. She is less stable with Bodhi. Thank God we have the two apartments. Family dinners at Bodhi’s apartment were always challenging, but now they are almost impossible.  The ONLY reason we are functioning at all and are able to keep Jani with us and out of residential is because we have two apartments, one for each child. I don’t know if Jani’s deterioration is because of the loss of most of her interns or if it is just the disease continuing its assault upon her life. She is still listening to us, but only barely. Jani is only calm at night when she is tucked into her bed in her apartment and whichever parent is with her that night is reading to her. That is the only time “they” let her go. Every other moment is a constant fight against whatever she is seeing or hearing.

 

But she is better in one regard: she has started to ask for her medication when she feels she needs it. She is still telling us when the rats, cats, or numbers are around. We just have to listen.

 

Today, we were all at Bodhi’s swim lesson. Before Bodhi goes into the pool with his instructor, he has to get a shower. He is terrified of showers. The moment I turned it on, he grabbed onto me with surprising force. He clung to me so tightly. He was crying, he was scared, and he refused to let go. It took everything I had to pry him loose enough to get his body into the shower. Once free, he was screaming his head off, his hands grasping for me, determined to get back to me. And once he was back, his hands closed around my neck in a vice grip, so tightly that he could not have been pulled free without probably breaking his arms.

 

And it felt wonderful.

 

He was holding onto me for life itself, and I loved it. I loved the force of his grip. I loved the pressure of his head against mine. It felt like he was literally trying to crawl into me if he could. I have never had another human body that close to me. It was a naked need, with nothing to conceal it. But it was a need I could meet simply by holding him back.

 

And then it hit me why it felt so wonderful.

 

Because I never had that with Jani.

 

Jani has never hung onto me as if her life depended on it. She has never clutched at me, desperate for me to save her from the outside world. She has never found comfort in my arms.

 

Never even when she was going into the hospital.

 

Never even when she was a baby.

 

Don’t get me wrong. This doesn’t mean Jani doesn’t need me. Quite the opposite. Her need for me is far stronger than Bodhi’s physical grip. Her need is a black hole that I cannot fill, no matter how hard I try. Her need is a need I can never completely meet, though I try every minute of every day.

 

For me, the worst part of mental illness is not the occasional violence. It is the way it isolates those who suffer from it, building a wall around them that prevents them from grabbing onto those that love them like Bodhi grabbed onto me today. They desperately want to reach out, they desperately want to be held, but they can’t articulate it. Instead, their behavior is their cry for help. And unlike Bodhi’s wail of fear, this cry often falls on deaf ears.

 

Very few people on earth can understand that a punch to the face can be a cry for help as keen as a baby’s wail for its mother.

 

If Jani could ever grab onto me like Bodhi did today, if she could grab onto anyone like that, then I would know that the power of her illness had been broken. As long as she cannot, as long as she cannot, when in fear, reach for those she knows love her, then I know the illness is still alive and well and still building that wall around her.

 

Being a parent to a mentally ill child means spending your life taking down each new brick the illness puts up. And the illness can build the wall faster than you can take it down. But you have to keep trying. And it takes everything you have, but you have to keep trying, keep trying to see your child’s face and who they really are, ripping down bricks, desperately trying to keep your child in view, desperately trying to keep the wall from swallowing them up.

 

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The Fog of War

It’s hard to protest against a war when you are in it.

 

My last blog, The Safety “Dance”, produced I think an interesting and valid debate over the stigma of mental illness.  The blog was written in response to how I have seen people react to the violence that can sometimes be a part of psychosis. It basically a statement to the general public that until you’ve seen it, you will never understand it. And when you do see it, you learn, no matter well-intentioned you are, if you are cut out to be a caretaker of someone mentally ill. As Nietszche wrote, “And if you gaze for long into the abyss, the abyss also gazes into you.” If you want to work with the mentally ill, eventually every good quality you have will be tested. You will be tested. And whether you hold, bend, or break has nothing to do with your strength of character. Breaking is not a moral failure.

 

I am increasingly coming to believe that there are no “moral failures.” There is only what you can take.

 

This is part of the mission of the Jani Foundation, formally the Village Project. Everybody has their breaking point. Nobody can last forever. So it is my hope that the Jani Foundation will provide respite and other services so we, as caregivers and society, do not break.

 

Interestingly enough, it is only us “neurotypical” people who break. The mentally ill never break. They may think that they do but they do not. They live with a struggle that would break us in seconds. Instead, they bend and they bend and they bend. We are the ones that ultimately force them to break.

 

At any length, my focus on violence once again, as it has before, produced some criticism of me amongst adolescent or adult mentally ill who feel that I am reinforcing the stigma of the mentally ill as violent and therefore something to be feared. I responded, quite bluntly, that I ultimately I don’t give a damn about the stigma. What I care about is the lack of services. Violent or not, every mentally ill individual is owed the dignity of being treated like a human being and should not be punished for something they cannot control.

 

The responses that I got, whether they agreed with me or not, all made me think and I have continued to think. I thought a lot about it today as I participated in a NAMIwalk as part of the BringChange2Mind Ventura County team. BringChange2Mind and NAMIwalks are all about fighting stigma. I hadn’t expected Jani to do the walk and so she was on the beach with one of her remaining interns. Bodhi was quiet in his stroller.

 

We started at the Buenaventura Beach boardwalk and moved along a five kilometer route. At first it was like getting out of the gate in a marathon, but once we were off walking, the crowd began to stretch out. The weather was stunning, with temperatures in the low seventies. I walked along, absorbing the sun and the smell of the sea. The route then turned inland at the Ventura River estuary and we found ourselves walking next to a swamp. It was peaceful, but there was no one there to see us, that is except for the Ventura City police and Ventura County Sheriff’s deputies who we spotted as we passed over the Amtrack Oceanliner track. They were looking down at something in the water. Pretty soon we spotted an ambulance slowly crawling along the path, patiently waiting for NAMIwalkers to get out of the way.

 

You only ever see a group of cops on a railroad bridge for one reason and there was no urgency in their manner. They were just standing, waiting.

 

I wonder whose body was found?

 

A homeless person?

 

Probably. They live under railway bridges. Was he hit by a train? Did he die of a drug overdose or alcohol poisoning? Was it exposure?

 

I don’t know.

 

But what I do know is that whomever it was whose body was found below that railway bridge, he/she was almost certainly mentally ill. And he or she had been discovered just as a few hundred NAMIwalkers were going past.

 

I think that is when it hit me.

 

I was both right and wrong.

 

It is not easy to tell what killed this man or woman. Was it the mental illness that drove them to a point where they either lived under a rail overpass, self-medicated to the point of death, or simply threw themselves in front of an oncoming freight train?

 

Or was it the stigma of a society that recoils at the sight of someone dirty and unkempt, mumbling to themselves as they shuffle down the street, wearing six coats even though it is 90 degrees outside?

 

In military parlance, there is a term called “the fog of war.” Its origins come from the time before smokeless gun powder, when black smoke from muskets and cannons would be so thick that it would envelop friend and foe alike, making it impossible to tell who you were shooting at. Field commanders would lose sight of not only the enemy’s position but that of their own troops. It is hard to fight a war when you can’t see what you are shooting at.

 

The Fog of War still exists, although today it is not a result of black gun powder. In modern warfare, the rapid movement of both friend and foe makes it difficult to separate friend from enemy and in the pressure of combat, with targets all over your radar screen, you can end up shelling or bombing or shooting at your own side or that of your allies.

 

Mental illness is perhaps the ultimate manifestation of the fog of war. You can’t see your enemy. Even worse, it can be hard to see your friends.

 

Mental illness turns your loved one into a living, breathing, walking battlefield. The medications are the projectiles you fire into your child’s body, but you are largely firing blindly. You can see the effects of the enemy’s attack (the psychosis and the behavior) but you can’t see the enemy. You are shooting in the dark, hoping you hit the target, but praying you don’t destroy the very thing you are fighting for.

 

Jani is now on 300mg of Clozapine, 750mg of Lithium, and 2.5mg of Haldol, yet the hallucinations are growing stronger. She is on enough heavy medication to stagger a normal adult, yet she is still playful and alert. Yet, I never sleep very well when I am “her staff,” meaning a night I am in her apartment. I find myself constantly checking on her, going to her bedroom door and watching, waiting to see her chest rise again so I know she is breathing. I watch the large stain of drool spread across her pillow in bedsheets, and when I eventually do go to sleep, I lie down in that wet bed and pray that some part of me will sense if her heart stops. I have watched her fine motor skills deteriorate. At first I thought she was just being “clumsy,” until I remembered that she didn’t used to be clumsy.

 

Why, in God’s name , do I put her through this?

 

Parents, like military commanders, have eventually have to make decisions. Every one hopes they will never have to choose the lesser of two evils, but sometimes, for some of us, that day eventually comes.

 

So you weigh your options and you make a decision. And you pray that you made the right one. Because when your child is mentally ill, ultimately you have to make a decision. No one else can do it for you.  And no I am not talking about getting the “diagnosis.” The decision point comes long before that. The diagnosis is just naming what you have already been fighting and it does very little for you.  It gives you no greater clarity. At first you hope that the doctors will be able to “fix” what went wrong. And that is what the anti-psychiatry group never see. They never see the child before. Nobody except those who were with us when Jani was growing up saw her as she was before this. They never saw what she lost and the battle she wages everyday to hang on to what remains of Jani Paige.

 

The doctors can’t fix it. They can make no promises (and they don’t). They tell you take it one day at a time if they have any sense at all.

 

You fight every aspect of the system from insurance to the hospital to the school for years before you realize that they are too paralyzed by the fog of war to take action.

 

And so you lose faith in almost everything. You certainly lose faith in most of your fellow human beings.

 

And the fog only gets worse. It becomes difficult to tell if this or that psychotic episode had an external stressor. Did somebody around your child make it worse? A teacher? Another child? Another parent? The disapproving looks from other people as your child melts down in a McDonald’s because she spilled her drink on herself and starts trying to strip her clothes off. You focus on the tactical situation, ignoring the looks at your back, focused on your child, kneeling over your child while she screams, writhes, and kicks at you on the floor and you calmly try to convince her that you can “fix” it, lying and saying you can take care of it even before you know if you can, then remembering that McDonald’s has high power air dryers in the bathroom and trying to figure out how to get your daughter into the men’s room because you can’t leave her half naked on the floor in front of the soda machines. And then she hits you because you want to dry her shirt. Even though you tell her you can dry it, she hits because she is fighting back, not against you but against the disease inside of her, fighting to be able to put on a slightly damp shirt when something inside of her is compelling her like a burning iron to strip and fight like it has commanded.

 

The fog of war means that I am trying to calm Jani down at the same time that something inside her head is telling her I am not to be trusted and inflicts pain on her. The fog of war means that when she hits me she could very well be trying to stop the pain inside her head, but she can’t get in there.

 

The fog of war means you can’t trust anyone because anyone who doesn’t know you thinks to themselves that they could do a better job if only they were Jani’s parent. The fog of war means that your allies, the mental health care system, looks for weaknesses in you, not your child. Because you they can fix. They can’t fix your child.

 

The fog of war means even those that read this can’t be trusted. Many parents conceal the actions of their mentally ill children for fear that they will lose their children for “allowing” them to be in dangerous situations.

 

The other night, Jani was at Bodhi’s apartment, having her dinner. I went down to take out the trash. When I came back, Susan was prying Jani loose from Bodhi. She had tried to chew on him. When I asked her why, she replied that she “had to chew on something.” She then proceeded to start chewing on her own hand.

 

What do you do in that situation?

 

In the past we would have taken her back to UCLA, but the UCLA doctors have done all they can.  Besides, every time Jani is there, she is mostly fine.

 

What good is putting her back into the hospital when tomorrow she will be fine?

 

So I reached for her last set up meds. I stood over her, making sure she drank them, and Bodhi came over, innocently, wanting to crawl up on the seat next to his sister. Jani reached to hug him. I, holding a cup of water in one hand and a pill bottle in the other, was paralyzed by the fog of war. I didn’t want to shut her down every time she tries to give Bodhi affection. But her arms closed around his neck and her mouth opened over his skull. Susan pulled him free while I was still standing there, dumbly, holding the cup of water that I should have dropped immediately.

 

I took Jani back to her apartment. On the way back, she stops every few feet to look up at the same point over her head. I ask her what she is looking at and she defiantly insists “nothing.” Yet her head keeps drifting up, locking on a point in space, her eyes following something. Every time I ask her a question, she looks up, as if waiting for a response from “nothing” before answering me.

 

And when she looks at me, her eyes are glazed over and there is a strange smile on her face. But the truly scary thing is that she is looking at me the same way she looks at “nothing.” I realize she is not one hundred percent sure that I am really there. She is not sure who is the hallucination and who is reality.

 

Back in her apartment, I ask her what she did to Bodhi. She pauses, looking to her side, clearly trying to remember. There is no quick denial of “nothing” like a normal child. She is not trying to lie or cover up her mistake. She is trying to remember. Next, I do what her outpatient psychiatrist has started doing and I ask her what we did that day. This is done to establish how “present” she is and it is a way to try and get her to focus on the real.

 

Again, she looks off, trying to think. She looks back at me and opens her mouth, as if to speak, but the words get caught. Whatever she was going to say is lost. Eventually, she says “I’m too tired to remember.”

 

We saw many animals that day, going to Jani’s favorite place. We saw Great Danes, a nine year old cat named Kitty that will let Jani pick her up and carry her around like a baby, two parrots, doves, and a chicken.  I will never reveal where this place is because it is Jani’s heaven, the only place on Earth that she is truly present and truly happy.

 

We had done this only one hour ago, but Jani couldn’t remember, and she was using the excuse of being tired to cover it up. Only when I prompted her memory by asking “Did we visit someone today?” did she start to remember.

 

In the shower, her eyes kept drifting up. I kept asking her what she was seeing and she kept insisting “nothing!” Trying another track, I asked her what “nothing” looked like.

 

And she answered, “A dog.” But she answered too quickly.

Out of the shower, she started telling me a story about how Mr. and Mrs. Nothing were going to Roxy for the weekend and they were leaving “baby nothing” with us. Her eyes would go right and left and it suddenly hit me that she was making up the story on the spot.

 

With sudden dread, I realized that Jani was, and had been, using her imagination to cover whatever she was really seeing. She was really seeing “nothing” but it wasn’t a dog. Whatever she is seeing, she either can’t or won’t tell me. Maybe she tries to make them into dogs so they are less harmless. Maybe she knows that I won’t take her animal hallucinations as such a threat. Maybe she just can’t name whatever it is she is seeing.

 

I had always used her imagination as a tool to bring her out of psychosis. Now it has become a defense for her hallucinations, a way to conceal their identity.

 

In the fog of war, one of my weapons against her hallucinations has produced the smoke that conceals them.

 

And so once again, I am losing this war.

 

And most of the parents at the NAMIwalk had kids who either are now or have been in residential.  They tell me how it did “wonders” for their child and how their child is now grateful they were sent there. Probably true. But in the fog of war it is hard to tell.

 

And the fog of war makes me question a walk to raise awareness against the stigma of mental illness that walked where nobody could see us. I had at least expected that we would be walking through the streets of Ventura. I had imagined bull-horns and picket signs and protesting marchers chanting “What do we want?! An end to mental illness stigma! When do we want it?! Now!”

 

But there was none of that. We were our own witness, all the walkers. And the dead man or woman under the bridge.

 

So what do I think about stigma now?

 

I think the disease is the enemy and the stigma is the “friendly fire.” And friendly fire can kill you just as easily as the enemy.

 

I think there are two different stigmas. I think adult mentally ill and mentally ill children face different stigmas. Adults, desperately wanting to be accepted and live normally, face the stigma of fear of what they might do. Children face the stigma over what they DO do. They face the stigma of an education and behavioral based mental health system that blames them for actions they can’t control, despite the fact that they try so hard for us.

 

They try. They try so hard. And yet so much of the world judges them as “brats, behavior problems, etc.” I have even heard Jani’s interns talk about Jani’s behavior with great sensitivity but then describe the actions of another child, who’s behavior sounds very similar to Jani’s, as a brat.

 

The behavioral model of psychology is the enemy of mentally ill children.

 

In the fog of war, it is hard to know who is killing the child faster: the illness or the stigmas.

 

But in the fog of war, there is still one thing I can see.

 

Jani, and other mentally ill kids (and adults), are stronger than the rest of us. So much stronger.

 

We should not be fighting to prove that they deserve us. We should be fighting to prove that we deserve them.

 

Because we haven’t done much to earn their trust.

 

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