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Run Like Hell

“What we’ve got here is…failure to communicate. Some men you just can’t reach. So you get what we had here last week, which is the way he wants it… well, he gets it. I don’t like it any more than you men.” – “The Captain”  Cool Hand Luke 1967

 

The first line of the monologue above is one of the more famous movie lines ever uttered. In the scene in which appears, Luke has been returned to the chain gang after a brief but futile escape. Luke is in a situation where he has no power, but rather than accept it, he mocks the despotic Captain’s affectation of benevolence, which causes the Captain to lose control and strike Luke, sending him sliding down into a culvert where he lands in a heap. Recovering his composure, the Captain delivers the rest of his line, which for him encapsulates the problem: that look fails to understand that his social status as a prisoner means that communication goes only one way, from the person with power to the person without it.

 

The line has since entered our cultural awareness and is frequently used to mock the principal behind it: the refusal to agree to accept that which has power over you. Ironically, it is often used, semi-jokingly, by those who have the power when attempting to establish their perceived control over those who don’t.

 

There will only be a handful of times in your life where a person or institution will exert total control over you. The first is your parents. Certainly, parenting today is a far more democratic endeavor than it once was. Modern Western parents indulge their children, primarily out of love but partially because any parent, unless he or she is totalitarian, learns to pick their battles. Most parents, including us, will hold the line when the failure to behave is significantly damaging to the child’s functioning within society. In other words, parents punish to teach lessons that they feel are necessary for their child’s future development, not for strictly punitive reasons. Very few parents in the Western world today punish their children purely because the child has inconvenienced them. The metaphorical “rod” is used sparingly because most parents have no interest in suppressing their child’s uniqueness. So they will only act when the behavior is unacceptable to the larger society that the parent knows the child must one day function in. And because they know, even if they can’t articulate it, that if you don’t teach your children that there are some appropriate times to knuckle under authority, eventually some authority will destroy them.

 

The only thing is that child development research hasn’t quite found this model to be true. Most children learn what is appropriate to their station not by punishment for infractions. In fact, repeated punishment for infractions tends to produce the opposite reaction, as it did for Luke, where the child loses all hope of fitting in.

 

Or they are mentally ill.

 

Part of the reason that we admire social rebels so much is because most of us lack the courage to challenge the status quo. Biologically, it may be that subservience to authority is built it, as to a large extent it would be necessary for the survival of the species. Too much individuality would make it impossible for the tribe to function and ensure its survival. But if you observe a pre-school or kindergarten on the first day, you don’t see twenty kids running amuck. A few yes, but not all. Most young children accept authority from the earliest age. We tend to attribute this to “better breeding” as the English would call it, but the research doesn’t bear that out. Rather, it seems that some naturally accept authority and while others spend their entire lives struggling to accept the system. Whether the system is totalitarian has nothing to do with it. Neither does previous upbringing in “manners.” This would indicate that the tendency to comply and the compulsion to resist are caused by internal factors, not upbringing or the environment.

 

Statistically, the one or two kids who are struggle with authority in preschool continue to do so over the course of their academic and even adult lives.

 

Luke continues to try and escape the prison, not because his existence is unlivable but because he cannot accept the restrictions on his freedom, even when accepting the authority of the captain would give him a moderately better life. We love such movies because we feel the celebrate the human spirit’s refusal to wither in the face of totalitarianism, yet in reality the willingness to die for “freedom” is antithetical to our basic survival instinct. Therefore freedom fighters, unless they are fighting for their immediate survival or that of their loved ones, are, acting in a way contrary to their own survival and therefore are, by definition, mentally ill. To put it more bluntly, if you don’t have a reason to fight, you won’t. And if you do, if you fight when accepting the dominate power would improve the quality of your life, then you are not a “behavioral” problem but unable to think clearly, which is mental illness.

 

It would be much easier for Jani to go along with the program, whatever program that happens to be. The fact that she cannot no matter how many times she is punished reveals the inability to consciously remind herself of the connection between the action and consequence. So she acts because the compulsion overwhelms her logical ability to think out the consequences.

 

It is desire of all living creatures to control their environment. Humans simply have more brain capacity to be able to do so. You want to control your environment because it makes you feel safe. A side effect of being a parent or caregiver of someone who is mentally ill is that you become a dictator, but not a dictator to your mentally ill child. That can’t be done. When your child is mentally ill, the illness makes any attempt at absolute control futile. You cannot alter your child’s behavior because their illness experiences no consequences for its actions. One of the things that triggered Jani’s last return to UCLA was the fact that during a psychotic outburst, she repeatedly pounded her hand against a glass divider.  Pain is the body’s way of triggering a logical response that will force the individual away from that which is causing the pain. But for someone experiencing psychosis, the communication between the part of the body experiencing the pain and the cerebral cortex is overwhelmed by what the psychotic individual experiences as the greater pain within his/her own mind. The internal factors that are precipitating the violence overwhelms any external pain, which is also why restraining a psychotic individual is both dangerous to them and futile. If Jani injures herself to the point that she sees blood, she will snap back into reality. Otherwise, she will continue to injure herself until the internal forces are mitigated, usually through getting what she wants. To the outside observer, this looks like “bratty” behavior except that brats stop short of severely injuring themselves to get what they want, because we are wired not to seek pleasure at the expense of pain. If the negative consequences (injury) outweigh the reward, a neurotypical person will accept the restrictions. In other words, a neurotypical child will stop short of self-injury to get what they want, and we call that a tantrum. A child suffering psychosis will self-injure to get what they want, which is the relief of the internal damage going on within the mind. If somebody or something is attacking you inside your head, you only thought is to end that any way you can and children, like most humans, react to pain (which although phantom to us is very real to them) by doing whatever it takes to stop it. Ten years ago, during our honeymoon on the Tahitian island of Morrea, I began to experience an itchiness so bad it felt like the skin on my back was on fire. The sensation became so unbearable that I began to throw my back against a tile wall because the pain of the impact actually distracted me from the pain in my skin (it turned out to be a subdermal sunburn that caused my dermis to swell against the top layer of my skin).

 

Ultimately, mental illness is the one thing that you as the figure of authority cannot control. If you are not personally invested in the mentally ill person by blood, you give up. If it is your child, you become a dictator of the world around your child. Usually, you are a benevolent dictator. But if you perceive that your child’s wellbeing is threatened by the outer society, you, I, turn into a totalitarian dictator.

 

We are coming up on the one year anniversary of Susan’s idea to split our children into two apartments in order to keep Jani with us but still keep Bodhi safe. In military terms, it was like Greeks abandoning Athens to the destruction of the Persians in order to protect the Athenian population from an invader they could not defeat. As Jani’s parents, we made the decision to sacrifice certain aspects of our lives in order to ensure the survival of both our children. We let almost every other aspect of our lives, anything outside of Jani, burn to the ground. Like the Greeks, we knew by that time that we faced an enemy that we could not defeat outright so it was better to abandon the defense of our lives so that all four of us might live to fight another day.

 

But every time you accept that defeat is inevitable, you need something to give you hope. That is why when MacArthur abandoned the Philippines to the Japanese, he promised to return. Tactical retreats sting worse that total defeat, because you have to face the facts that you went up against the enemy with everything you had and lost. We retreated in the face of Jani’s illness into two apartments to buy time, hoping that as Jani got older, she would learn to better manage her illness and that perhaps the medications would in time have more effect.

 

But for me, accepting the permanent presence of Jani’s illness had a profound impact on me. Unable to control what was in Jani’s head, I responded by trying to control everything else around her. I began to operate like the US did in Vietnam. Unable to subdue the Vietcong, the US Army responded by laying waste to the surrounding countryside. Any village that could not be brought under the direct control of the US military was burned to the ground and its people relocated. If you can’t destroy the enemy, destroy anything the enemy can use.

 

This is what I did with the intern program. Initially, Susan and I were so grateful for any help that we did not place significant demands upon the first set of interns. Most of them ended up observing rather than actually participating in helping us with Jani, but for us it was the first friendly force we encountered, even if they were no more effective than the UN peacekeepers in Rwanda. We were fighting so many other things: Jani’s illness, Blue Shield, UCLA, that it was nice not to have another group of “unfriendlies.”

 

But by the time the second group of interns arrived on the scene in December of 2009, the situation on the ground had changed. We were starting to lose the war again against Jani’s schizophrenia. It was gaining ground and we were falling back. As a result, this time we demanded much more of the interns. We hadn’t expected the first group of interns to be actual combatants with us. With the second group, we expected them to actively participate in the war. Those that could not make the cut were fired by me at such a rapid pace that soon there was almost no one left. By December, winter, always Jani’s worst time, I could no longer tolerate observers. They were dead weight. I needed soldiers and if the intern wasn’t up to it or deviated in even the slightest way from my requirements, I canned them and sent them back to “the world” as soldiers in Vietnam used to call anywhere outside the War. The intern program almost died right there and would have had not the idea been hatched to put new interns through a one to three week observation period that would allow us to see if they were up to the job of keeping up with Jani. Therefore, we created what was probably the only college internship that had more in common with boot camp than a volunteer position. We actively worked to break down any prospective interns preconceived notions and rebuild them as we wanted them to be. We wanted interns who wouldn’t waste time trying to figure things out but would simply do what they were told to do, which is keep Jani safe and engage her mind to distract her from her hallucinations. The lead intern, the only survivor from the fall campaign, embraced the idea of teaching future interns how to work with a child suffering from psychosis.

 

And it worked beautifully. For four months, the number of interns who came to spend time with Jani grew from five to eighteen. The attrition rate dropped to zero. The interns became Jani’s friends, her only flesh and blood friends. The interns allowed me to go back to teaching, assured that Jani (and Bodhi) would be safe.

 

The revamped internship was so successful with Jani that we latched onto it as the basis of our future non-profit (currently named the Village Project but due to so many other non-profits having this same will soon change), believing that if we could replicate Jani’s intern program across the country, we could provide the badly needed support for families with mentally ill children that government social services seemed unable to do.

 

The passion of these interns and their commitment to Jani was infectious and I came to believe they could provide a cheap way to change the way we provide services to families with mentally ill children in America. I assumed they were all true believers and not only behind Jani but behind the cause she inspired-to provide in-home support to families with mentally ill children so that parents would one day no longer have to face the choice between sending their child to out of state residential or letting the child’s illness take down the rest of the family. In those two choices, the only two available today, everybody loses.

 

Then in the space of five days it all fell apart.

 

I am still not privy to all the details. The consequences seem inappropriately severe given the transgression, but maybe everybody reaches a point where they have to ensure their own survival first.

 

During Jani’s first day in UCLA, she had a roommate about her age. We met her caretaker, her grandmother. This girl was being released the day after Jani arrived. Thinking only of getting Jani a playmate, I left my card, not expecting the grandmother to call. Susan and I have given our cards to countless parents of kids in the UCLA psych ward. For me it is always that if I see Jani connect with a child on the unit, I am desperate to try and continue that on the outside. But most parents never call. Maybe they don’t want to be reminded of a painful chapter. Maybe they want to believe that their child is “fixed” now. Most likely, they want to return to the lives they had and are not ready to accept that Athens is already burning, the Persian Army is in the City, and as parents they will need all the allies they can get in what they have yet to realize is a lifetime fight. They will fight their child’s mental illness until the day they die, so their only chance at any life for their child is to find allies.

 

But this woman called. The girl was released on Friday. Like Jani, she needed long term stabilization but the insurance won’t allow it. So by Monday she was in crisis again. During her two days with Jani, the grandmother met several of our interns, who were required to keep coming to see Jani even when hospitalized. The grandmother connected with at least two. According to the grandmother, one of our interns agreed to work with the girl, not as an intern but as a paid babysitter, for lack of a better way to describe it. The other intern asked Susan if she could work with this girl as well. The lead intern asked Susan if I was okay with this and she said yes.

 

Like Oliver North, I have no recollection of that. I am being facetious, but if Susan really did ask me about it, I have no memory of it, as I would not have agreed to it. Yes, I want one day for the Village Project to provide interns to any family of a mentally ill child, but as of last Monday we were not yet ready.

 

Part of the problem with living in two apartments is that Susan and I often fail to communicate. This has frustrated even the media who have worked with us, for Susan will agree to something on my behalf and the crew will prepare, only to have me later contradict Susan’s agreement once I find out about it. Susan is the last to know what I am doing and I am the last to know what she is doing. Clearly, this lack of communication between us increasingly became a strain on the interns. What they didn’t realize is that it is difficult to for Susan and I to communicate face to face when we are never in the same place together. When we are, it is still difficult to communicate when Jani is pulling the collar of my shirt so strongly she is almost choking me because she wants to go (to move on to the next distraction from her hallucinations) and Bodhi is screaming his head off because he is in the terrible twos, which makes Jani scream and throw things at him, which forces me or Susan to rush Jani out of the location to protect Bodhi.  Not exactly an environment conducive to a productive conversation and one that is virtually impossible for us to make decisions together.

 

So I was not aware that Susan had allowed one of our interns to work with with this other child. At the same time, Susan was being bombarded by emails from desperate people several times a day, some from parents of mentally ill kids and some from adults who needed help. Susan’s Facebook status updates tend to be indictments of some kind of the failure of social support systems in America and so she attracts those who see her as some kind of potential savior who can ease their suffering. I would have no problem with this if we had the resources to help. But we don’t… yet. Susan is so eager to provide what social services and the Department of Mental Health have failed to provide that she makes promises of aid we cannot yet deliver on.

 

So she made the mistake of forwarding all these desperate people to our lead intern, giving them her Facebook account and her email.

 

I didn’t find out about this until after the fact, but which time the damage had already been done. The lead intern overloaded like a blown fuse and literally shut down, breaking off all contact with us.

 

Having no idea what had happened, I kept desperately trying to raise the lead intern by phone, text, and email, to no avail.  I knew something had gone terribly wrong but all I could do was leave messages assuring the lead intern that whatever it was we could fix it.

 

She never answered any of my requests for information. Eventually, I became so concerned that something that happened to her that I contacted the professor who had set the whole program up seven months earlier. I knew the lead intern had, like most of us, a history of depression and I was scared for her wellbeing, so I asked for her address, wanting to make sure she was okay.

 

The lead intern finally responded by unilaterally resigning. She gave no explanation in her resignation email.

 

Next I got an email from her professor, out of town on vacation, that she had spoken to the lead intern and that she was okay and that her reasons for resigning seemed sound. She too offered no further explanation, other than to say we could all meet in two days when she returned.

 

It was then that I realized that the lead intern was deliberately avoiding me.

 

But Jani was being released the next day and I needed my lead intern back because Jani needed her. So I kept calling and sending emails, ignoring the directions of the professor not to do so. Rather than let it go like I should have, I became increasingly angry at the silence of the lead intern, not sure what I had done to deserve it.

 

Finally, the night before Jani is released, she responds to one of my emails, saying she had been “too angry” to respond before then. I acknowledge that Susan made a mistake and stepped over the line, but my apology on Susan’s behalf is not accepted. Soon it becomes clear that Susan is not the focus of her anger: I am.

 

Emails continue back and forth and increasingly she begins to criticize me and Susan as parents. Naturally, I am in no mood to hear this. Yes, Susan and I put too much on the lead intern but that doesn’t justify her swinging from telling us we were great parents and we must not let Jani go to residential to criticizing us and telling us we are not doing what we should be doing for Jani in the space of a few days.

 

Soon I was so angry that I cancelled the meeting scheduled for this morning, feeling that feelings were so raw that nothing productive could come out of the meeting. Not to mention, I still had no idea what was behind all this animosity.

 

This morning, I finally get a response from the psychology professor. She finally reveals what happened. Apparently, one of our interns went to work with this other child, Jani’s former roommate during this last stay. The grandmother left her alone with the girl, who subsequently went into a psychotic episode and attacked the intern in a house full of knives and sçissors. The intern called the grandmother, who said she couldn’t come home due to work and that the intern should call 911. The intern did so and watched as the girl was taken away. She was so traumatized by this experience that she quit OUR intern program.

 

When I told Susan about this, she told me that she had no idea that this intern was working with this child. It was ANOTHER intern she had given permission for her to work with this girl.

 

Feeling compelled to get all sides of this story that was completely new to me, I talked to the grandmother, who told a slightly different and less histrionic. According to her, she and the intern had struck a deal where she would pay the intern to watch the girl while she went to work. She claimed that the intern assured her she could handle the situation. And she did not say she couldn’t come home because she was at work but because she was 35 miles away and wouldn’t make it back before the police and paramedics arrived.

 

Regardless of which story is correct (and I suspect the truth is somewhere in between) Susan and I had nothing to do with it. We neither encouraged or mandated that the intern assist this grandmother and her mentally ill child. In fact, we knew nothing about it.

 

Showing no interest in getting my side of the story, the professor announced that her students were in danger  and that students were leaving the program increasingly embittered by their experience with us (all news to me) and that she was shutting down the intern program.

 

And she did.

 

My emails asking her to reconsider because she was punishing Jani by taking away her support system were ignored. She never replied. She also has not returned my phone calls.

 

So just like that, the internship program, the thing we held up to the world as an example of how you could provide in home services to families with mental illness, was destroyed. Worse still, the professor seemed to have no concern for Jani’s wellbeing when her interns were abruptly pulled from her life. Her only gesture of mercy was that the interns could continue to work with Jani if they so chose, but without the support of Glendale College and without credit.

 

I feel like Caesar stabbed in the back. “Et tu, Glendale College?” You too, interns?

 

I alternate between rage and profound pain. I want to cry all the time. I am completely shattered. Once again, now all Jani has is us.

 

Without the intern program, Jani’s chances of staying out of residential drop dramatically. Whatever mistakes we made, and I have no doubt we made a lot, the decision of the professor to unilaterally kill the program she helped create is purely and utterly punitive. I am angry and I am hurt, but I will eventually get over this. Jani may not. If anything happens to her, it will be all too easy for me to say that this psychology professor at Glendale College has blood on her hands. In the end, she was no different than all the others who cut and run when it got too hard.

 

I am shattered because the system I had relied on to keep Jani going is now gone. A handful of interns have privately messaged us or phoned us to say that they plan to continue, regardless of the internship being officially over. I am eternally grateful to them. They are all I have left. I am even considering asking back interns that I fired last winter. I have no choice anymore. I have suffered a huge loss. I am so angry and in so much pain that Jani is picking up on it and I must conceal it, although already she has asked me where one of her interns was who was supposed to show up today. She didn’t really react when I had to tell her he had decided not to come, but it broke my heart. I tried to tell her that it wasn’t because of her but because he was angry with me, but no matter how much you hate me it shouldn’t stop you for being there for an innocent child.

 

I have lost all faith in everything and I am struggling to find something to believe in again. I have to. I have to for Jani and Bodhi. I will not let these selfish students and their professor drive Jani into residential.

 

I want them to feel what I feel, but there is no way to do that and it is pointless. The decision is final and too much damage has been done to ever repair it.

 

We still have a few interns who will stay at least long enough to finish my semester at CSUN. The fact that I cannot  go to work without the interns also fell on deaf ears.

 

I don’t know what really happened with that intern and that girl. Maybe the intern got her first real taste of psychosis and it scared her away. In understand. But she can run.

 

Me, and Susan, and this girl’s grandmother, and this girl, and Jani, we can’t.

 

There is no escape for us.

 

I guess I have learned that you can recruit people in this war against mental illness. Our only hope is the ones who were drafted into it:

 

The families.

 

And the children themselves.

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5 comments on “Run Like Hell

  1. The fact that you even tried this is a testament to how far you’re willing to go to help Jani and other kids like her. You’re gonna have to keep thinking outside the box (pardon the cliche) to find the ultimate answer.

    Ted Turner, when he owned just a little tv station in Atlanta, came to every strategy meeting with at least 10 ideas. He felt that was his purpose – throw out ideas that might pan out into something big. 99% of the time, they didn’t. But when they did – well….you know who Ted Turner is, right? 🙂

  2. A man and his daughter are drowning. In a boat nearby are some horrified onlookers. They desperately want to help and jump in the water without hesitation. But they are not lifeguards, they have no equipment and no real training. The man is frantically shouting directions and flailing, thrashing, grasping. The would-be rescuers are overwhelmed and afraid. They can’t help the little girl or the man without feeling as though they are drowning themselves. They retreat to the boat. Maybe they can call for help from shore.
    I am sure you see where I am going with this story. I say this with the kindest intentions – but I think, Micheal, in your frantic desperation, you make it hard for people to help you. You admit that you shout at people, abruptly dismiss them, and treat them like grunt soldiers. Your lack of civility is understandable given your situation, but it must be stressful for volunteers and even friends. You are quick to call people out on your blog – people who a few weeks ago you were lauding. I know you have little time for introspection, but in my experience when you have problems in most of your relationships, the problem isn’t everyone else, it’s you. I really hope you take this in the spirit of help with which it was written.

  3. Damn. Just that. Damn. I hate that the program fell apart. Hate it.

    [quote]But for me, accepting the permanent presence of Jani’s illness had a profound impact on me.[/quote]

    Most people never have to learn that kind of acceptance. That’s why the HAVE to blame you and Susan; why people in my world have to blame my husband and me. It’s why we’re so alone, all on our little ice floes, struggling. People can stand on the shore and say, “If they would just…” and it makes it easy for them to go do something else. And I know you know that, and my God, does it get tiresome to see that you caught some of it again.

    Worried about you and hating that I can’t do something to help. I hate that there are 3 people in my support group here whose children are in crisis right now, and the waiting list for a peds psych bed is 30 days. I hate it all.

    Hoping that something, anything, will arrive in your life today to lighten things just a bit.


  4. What you say about families is absolutely true. Without my parents I’d have been found in a red bathtub years ago. Who else could I have counted on? But my condition is laughably benign compared to what Jani has. I can relate to her in the same way someone who’s been in a bar brawl can relate to the trenches of the First World War. But still, what you say about family resonates deeply.

    I don’t know if this makes sense, but the stories you tell invoke awe in me.

    Your family is on the front lines of something that’s so misunderstood and bewildering that it almost seems like alchemists trying to find the fifth element. Wanting to keep your family together in the midst of all of this…it is nothing short of heroic. This world would be a much better place if everyone had parents as devoted as you and your wife.

    Thank you for sharing your story.

    Note from Michael: Thanks, O.T., but nothing is benign. Don’t denigrate your own struggles. If you would have been found in a red bathtub (loved the way you described that-you are a poet) and you are still here today, that is a victory. Be proud of yourself!

  5. I am so sorry this happened to you guys. The support group literally saved me from complete breakdown. You are right, we can’t run nor would we even attempt to. They can because they donn’t have to live it. Please don’t beat yourselves up on it. You’ve done wonders and helped alot and brought mental illness in children to the forefront. Anyway, we have no time to stress much or look back, do we, in our fight for our kids. Jill

    Note from Michael: Very true, Jill. The war goes on.

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