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.