Month: August 2013

Screenwriter’s Blues (Listening to Los Angeles)

If you are a long time reader of this blog, you have probably noticed I rarely write blogs about my own family anymore. My reasons for that are complicated. The easiest explanation is that this is no longer “Jani’s Journey” (the old website). This is the Jani Foundation, a public charity that primarily provides free social events to “emotionally disturbed” public school children and their families in the Santa Clarita Valley, north of Los Angeles. By definition, a public charity belongs to the public which it serves, so talking about Jani doesn’t seem right when she is only one of about 35 kids we currently serve (budget and manpower limitations). Also, for Susan and I, it was always the same goal: to bring attention to the plight of severely mentally ill children. We hoped that interest in Jani would bring people to that cause. All the media we have done as been as a means to that purpose, never about our own situation, which is why I tend to roll my eyes at emails from people hearing “our” story for the first time and suggesting some “miracle cure.” However well-intentioned they may be, WE are not looking for help for ourselves. We haven’t been for a long time. So I stopped writing about Jani in an effort to separate our story from the larger issue of childhood severe mental illness.

 

Of course, the downside to that is that it leads some people to operate on information years old now and make claims that Jani is not doing any better. Jani has, for lack of a better word, “recovered.” I hate that word because it implies that her schizophrenia is gone. It is not. But it is no longer the defining force in Jani’s life. The defining force in Jani’s life now is impending adolescence. That… or Lorde, the 16 year old New Zealand singer. Or Blink-182. Take your pick. Jani goes to school for pretty much the entire day now (we convinced her to stay longer because the other kids in her ED class were getting upset that she was leaving early). Considering that she spent three years in “home/hospital” where she would go to school only after other kids had left and work one on one with a teacher, this is mind-boggling. She has friends in our apartment complex. She prefers them to her hallucination friends now. She begs me to go to the pool when she sees other kids down there.

 

I got to be honest. I can almost forget that she has schizophrenia. The events of January First seem so far removed now that it is almost like it was another life, just like that time period seemed another life removed from the one before that. She is not who she was before the acute period of heavy psychosis. People ask me sometimes if she can still “do” the intellectual things she did in her early childhood. I don’t know. I know she is smart enough to get by but I am not quizzing her like I did back in the old days. That Michael, who had hopes of Ivy League and the Nobel Prize for his daughter, is gone. Dead. Replaced by this current Michael who is just thrilled to have Jani be alive and happy and getting more and more functional everyday.

 

Her improvement is attributed to finding the right combination of medications, the efforts we made to reduce her stress level, time and getting older, and Jani’s indefatigable spirit.

 

But if I wrote all that, you would think the story is over and the story is never over. Jani still has to live the rest of her live with this disease, and we must ensure the survival and happiness of all kids like her, which is what the Jani Foundation attempts to do.

 

But that isn’t the only reason I don’t write that much about our family anymore. Part of is the simple fact that I don’t necessarily want you, the general public, to know everything anymore. I wasn’t quite sure why that was.

 

Until last night.

 

I have fresh scars. Fresh wounds. For the first time in years. Not from Jani, though. The scratches and bruises that I got from Jani when she was acutely sick have long since healed. And the psychological scars? That is what you read in January First and reason why some readers don’t like me very much. What you read in the book is me ripping apart at the seams as my daughter slipped into something I couldn’t defeat and lashing out at everyone around me. I bared my soul in that book.

 

Since I wrote the blog “Bodhi Went (Bury the Lie),” Bodhi has returned to the hospital two more times. I just didn’t tell you about it. Our closest friends knew (which is why I am very careful about who I add to my private Facebook page-don’t go looking for it. You won’t find it and even if you do, I won’t add you if I don’t know you personally). But I didn’t want to tell the world.

 

It’s not because of the tiny peanut gallery that stalks my every word on the internet and would claim, as they do, that we are trying to extend our “fifteen minutes” with yet another mentally ill child. I could give a rat’s ass about that. They can’t have it both ways anyway. Either Jani’s illness was caused by our parenting and if that is the case she shouldn’t be better and we wouldn’t “need” Bodhi to be sick or we’re not any different from other parents and Jani is better and they have to admit that we are a contributing factor. That sentence doesn’t make any sense. Neither do they. It’s my attempt to rationalize with people who need psychiatric help. Anyway, screw them. It’s not about them and I don’t care what they think. One of these days they will realize that nothing they do affects my life and the life of my family.

 

That was a waste of a paragraph.

 

The point is I am not claiming Bodhi has schizophrenia. I don’t know what the fuck he has because he lacks Jani’s verbal abilities. He probably is autistic. I don’t really care. Diagnosis doesn’t mean anything in modern child psychiatry. It’s the symptoms. You try to treat the symptoms.

 

And Bodhi’s symptoms are not like Jani’s. He doesn’t fly into rages. He throws himself around like somebody is jamming his body with a cattle prod. He is violent, but not like Jani. He is violent like he is literally on fire. The struggle is always to protect his head from the floor and the walls. He gets bruises everyday, self-inflicted. HE, and not Jani, is the reason why the downstairs neighbors complain about the noise in our apartment. He screams like he is on fire. But the fire is in his head. Only sleep, and sometimes, if he can let us, holding him bring him relief. From the moment he wakes up until the moment he finally falls asleep, he is doing constant battle with something inside his head. His ABA behaviorists can’t even work with him anymore. All they can do is try to keep him safe. It doesn’t change at school. Discussions have begun about transferring him from autism special day class to ED, “emotionally disturbed,” the same program Jani is in, only because the staff there is better trained in restraining a child for their own safety.

 

Three times this year Bodhi has gone to the hospital, always for the same issue: self-harm.

 

And he is getting worse.

 

He went back a week ago. Yesterday, Thursday, he was released. He was released so he could go to UCLA’s Autism Research Clinic. He was released at 12:45pm. The appointment at the clinic was at 1pm. Distance from the hospital to the clinic: less than 1000 yards.

 

We arrived at the UCLA Ronald Reagan Medical Center at 12:45. Susan went to pick up Bodhi from inpatient while Jani and I went to the Clinic to sign in for the appointment.

 

At 1:05, I see Susan and Bodhi coming in through the sliding doors, Susan holding Bodhi’s hand and the inpatient social worker holding his bags of belongings. She wishes us well and leaves. Bodhi seems fine, although he does want to go home. We tell him we will go home as soon as our appointment is done at the clinic, which the inpatient doctors wanted.

 

1:06pm: I lead Bodhi inside the clinic waiting room, which is very nice, filled with toys and books. The doctor is not yet ready.

 

1:07pm: Bodhi throws himself on the floor, screaming. I go down with him, cupping my hand under the back of his head to protect it.

 

At that point, the chronology gets a bit fuzzy. Bodhi is going into what I think is another of his usual fits. As soon as the doctor comes, he will calm down. I think he can be distracted. I try to show him the toys. I pick him up.

 

He tries to torpedo out of my arms, like a back flip into a pool like they have in Olympic Diving. I have him. I hear Susan tell me that they (the inpatient staff) had had to give him a PRN of Thorazine that morning.

 

I pull Bodhi’s head back up and scream in pain as he sinks his teeth into my left shoulder. I can’t see it but I know it’s bad. He’s bitten me before in these states but not like this. This feels deep. Susan gently pulls his head back. We go to the floor.

Bodhi is thrashing around in my arms and I am trying to keep his head safe from him hitting it on the floor. I do this by holding him to me but that exposes me again to his bites. I cry out again as this time he bites into my left arm. I know it’s not malicious. I know it is like someone biting down something as a reflex. But it still hurts.

 

The receptionist tells me that the doctor is coming. A few minutes earlier, I was nice and polite, but now, for the first time in years, since the events of January First, I revert to that asshole you read in the book who you didn’t like.

 

“By the time the doctor gets here, he’ll be fucking dead!” I cry out over Bodhi’s screaming, to no one in particular. Do I need to explain why I become an asshole in those moments? My child is in a state where he is unable to stop hurting himself and the only thing between him and him getting seriously hurt is me and I am losing control. I am not enough. I am rendered powerless against whatever is going on with Bodhi, just like I was with Jani, so I lash out. What I really want is to beg for help but I have become so used to people just sitting there watching that I am unable to cry out that I need help to anyone but Susan anymore because I know she will take action.

 

The doctor comes. We know him. He treated Jani long ago. He is a good guy. He tries to calm Bodhi to no avail. I am yelling that Bodhi needs to go back to the unit (inpatient), that he never should have been released. The doctor agrees. They can’t see him in this state. He pages the head of child psychiatry.

 

Susan screams in horror. I look down at Bodhi in arms, realizing that he has stopped thrashing around. He is biting down on his own fingers. Hard. Really hard. His teeth are clenched and his jaw is quivering. I can see the skin around his hands turning red, then purple.

 

We get his hands free from his mouth. He has deep purple indentations on his fingers. He has bitten to the bone. Susan screams again that he is bleeding. From his fingers? No, his mouth. He appears to have bitten his own lip. And his gums are bleeding from the friction against his own fingers.

 

From then on, I am only vaguely aware of what is happening around me as I try to keep Bodhi’s hands from his mouth by holding them (which means my hands are repeatedly bitten) and trying to protect his head. Another doctor joins in. And another. Gradually every doctor in the clinic is there, all trying to protect Bodhi from himself or calling for help. UCLA Health Security arrive. One takes over holding Bodhi’s legs while the other calls for an ambulance.

 

The original doctor writes a 5150 hold for Bodhi to get him back onto the inpatient unit, although we will have to go through the ER. But we can’t get him to the ER. The ER is a 1000 yard walk over concrete. We will never make it without risking Bodhi catapulting his head into that concrete.

One of the doctors calls 911.

 

The clinic is closed and all patients are told to wait outside.

 

UCLA Police arrive and just look in at me, Susan, the doctors, and Security struggling with Bodhi. I hear that paramedics won’t come because “it isn’t a medical emergency.” I scream that it is a medical emergency. I can feel Bodhi’s heart racing. His breathing is fast and shallow. I tell them that if EMTs don’t come soon, it will be a medical emergency.

 

UCLA has their own EMTs but they take forever.

 

At some point, Bodhi begins to wind down. Maybe that thorazine he had hours earlier is working. He says he wants to go to the bathroom. I take him. Security comes with me. He says he has to make a poopy. I help him onto to the toilet. He sits for a few minutes. I start to relax. Then he throws his head back, his head missing the flush bar of the toilet by a hair. Literally. It brushed his head. Had he hit it, he would have had a serious head injury.

 

We get him back into the clinic. He is ramping up again. I have been bitten in several places but I have no time to think about it. Just dull pain. He is back to trying to bite his fingers. He may not be trying to actually bite them off but he is biting with such force.

 

Another doctor brings out a heavy blanket just as the EMTs finally arrive. We wrap him up, him still on top of me, to pin his arms. I go onto the gurney and they strap me down with Bodhi on top of me.

 

He is calming down.

 

We get outside and there are thee ambulances, one UCLA EMT and two LA City Fire. Now they are treating this like a medical emergency and it only took one hour and forty minutes.

 

I know because I ask the EMT what time it is.

 

If Bodhi had been having a medical emergency, they would have been there for him in three minutes. But because this was a psych emergency, it took more than 90.

 

The autism doctor has to come with us because he signed the 5150 hold.

 

It is a five minute drive back to the ER.

 

I send Susan and Jani home. We could be in the ER for hours and Jani can’t do that. I tell Susan I will get a cab home.

Bodhi falls asleep. I check my wounds. They are bad. The nurses want me to check in but I won’t because I would have to leave Bodhi. Bodhi wakes up again late afternoon. He is given thorazine as a preventative measure. It doesn’t work. He eats a little then becomes agitated again. He hits his head on the side of the gurney. I am alone. I call for nurses. Eventually it takes four of us while another calls to see why it is taking so long to get him upstairs to the unit.

 

They can’t transport him. Bodhi is so bad he can not be safely transported upstairs.

 

I have been at this for hours. I need a break but I need to know Bodhi will be safe. The nurses offer to put him in restraints. I refuse. I would rather hold him.

 

Two hours after the thorazine, it finally begins to kick in and he calms down enough for transport to the Unit.

 

He has urinated on himself and needs a bath but I am a little leery about doing that, given what happened the last time I bathed one of my children in a hospital (read the book). He is calming down. I get his bed down on the floor. I am reluctant to leave him to do the admission paperwork with the nurse, but I am spent. I have no choice anymore. I can’t keep him safe and I am physically and emotionally drained.

 

The only thing I remember about the admission was when the nurse asked me what my goal was “for this admission.”

 

“For him to not bite off his fingers,” was my answer.

 

***

 

It is after 9pm when I get back outside the hospital. Dark. I have no way home. I call Susan. She offers to come get me with Jani but I don’t want to disturb Jani’s routine. She is going to bed. She tells me she has emailed the producers of the “Born Schizophrenic” series because they emailed earlier in the day, interested in discussing another special for next year’s “Psych Week” on Discovery Health. She told them what happened and said they should come down. I call them, hoping one of them can give me a ride home.

 

No answer.

 

Which is why “fame” means shit to me.

 

I call my best friend, John, hoping he is not already asleep. He works with me at CSUN. We were TAs together. I hate to drag him out knowing that he taught a full load of courses today but I have no other choice. He doesn’t answer the first time but he has told me that if he doesn’t answer and it is an emergency to keep calling. I call again. He answers. I ask him to come get me. He does so without hesitation, even though it is a hell of a drive for him.

This is not the first time he has come to get me. He came when Jani went to Loma Linda over five years ago. He came the first night Jani ever went into UCLA. I had to leave him out of the book because I was up against a hard word count from Random House and I didn’t have the time to introduce him as a “character” but he was there. On page 290 of the paperback I write “Thank you from the bottom of my heart to my friend John Gides. John came the night Jani went into UCLA and I would not have made it without him.” That’s one of the greatest understatements I have ever made.

 

Thursday night was the third time John came and the third time his presence saved me from breaking to pieces in a Los Angeles night.

 

If you have never been to Los Angeles or have never bothered to look up while you were here, you don’t know what the sky looks like here at night. There are no stars. The marine layer rolls in off the cold Pacific and the sodium lights of the City reflect of the sky, giving it this sickly orange color.  It reminds me of death.  I suppose that is why in that sky I see the desperation that is people of Los Angeles. All the people who came here because of a dream and watched that dream die. It’s all there in the night in this City, the desperation and loneliness of millions of people, sending their hopes and dreams and pain up into the night and it reflecting off the marine layer and back down amongst the freeways and the neighborhoods of Los Angeles.

 

You do not want to be alone under that sky. Being alone under that sky will eventually kill you.  The homeless here, and there are thousands, do not have to deal with cold weather, but they do have to live out there under that dead sky.

 

John saves me by not asking me to talk about what everybody wants me to talk about. We talk about the insignificant stuff. We complain about annoying students we’ve had and what it would be like to teach at a small liberal arts school instead of a giant state university, what I refer to as our Wonder Boys fantasy (read Michael Chabon). For lecturers, Wonder Boys is our fantasy of what we thought being college instructors would be like (Ivy walls, comfy offices, faculty lounges, students who actually know your name and you know theirs).

 

But it was on the ride home on the 405, looking out the window at the Valley streaking past us and that damn Los Angeles night sky, that I realized why I hadn’t told you about Bodhi’s hospitalizations after the first one and why I still don’t want to tell you and why you shouldn’t expect this blog to turn into updates on Bodhi.

 

Because this is my pain. My fucking pain. It’s mine.

 

Left to Our Own Devices (The Optimist)

Antoinette Tuff’s name is very appropriate. While Dekalb County prosecutors fall all over themselves to come up with charges for Michael Brandon Hill, who Tuesday walked into Ronald E. McNair Discovery Learning Academy with an AK-47 and more ammunition than your average military platoon carries (because of course there is no better deterrent for people in a severely psychotic state than a long prison sentence), Tuff, a front office worker at the school, may have helped the cause of treating the severely mentally ill take a giant step forward.

 

For the first time in one of these “tragedies,” there was no tragedy. Everybody got out alive, including Hill himself. That is the first significant part of this. Adam Lanza’s not around for us to ask him questions anymore. For James Holmes and Jared Loughner, it is too hard for society to look beyond the crimes they committed. In Aurora, they still want blood.

 

But no blood was spilled in Decatur. No lives were lost or changed negatively forever. No one took a bullet.

 

For me, this is a seminal moment in mental health history. Perhaps it is fitting that it happened in Georgia, the birthplace of Dr. Martin Luther King and the Civil Rights movement. For me, Ms. Tuff is the spiritual descendent of Rosa Parks. She defied fear and made a difference.

 

What did Tuff do that was so incredible?

 

She treated Hill like a human being. She talked calmly to him. She told him what he needed to hear to stop whatever it was he planned to do with that AK-47.

 

I would strongly encourage DeKalb County Sheriff’s to hire Tuff as a hostage negotiator.

 

Of course, credit must also go to Hill himself, who had enough logic left inside his psychosis to tell Tuff that he knew he should have gone to a hospital instead of coming to the school.

 

One human reached out to another human who was losing his humanity to his illness and she pulled him back. It is too late for DeKalb County prosecutors to be heroes. Tuff did what will not occur to them as they now try to punish Hill, or to the police with long guns who were ready to kill him. Without a weapon and without the loss of life, Tuff brought Hill back from the hell he was in and the deeper level of hell he was going to. It appears he wanted to die at the hands of police. They might have obliged. But Tuff made human contact despite her own fear and changed the course of history.

 

For the first time, there is nothing to distract us from the truth, which is a severely mentally ill man off his medications went into a school with a gun and was not so far gone inside his psychosis that an office worker couldn’t get through to him. We have to face that truth because that is the only truth there is. If Hill had been undergoing intensive outpatient therapy like AOT (mandated medication), he would not have gone to the school that day. But this time there are no dead children or dead anyone to mourn for. There is no killer to shake our fists in rage at. There is only a sick man.

 

I want you to sit with that for a moment.

 

Hill is and was no killer. He was a sick man in incredible pain caused by a disease you can’t see until he stuck a AK-47 in your face. He wanted to die because he wanted to end the pain. But instead of dying or killing, a woman saw the humanity that was still inside him. She saw the man inside the disease

 

And by God the disease, the psychosis, let him go long enough to lay down his weapon and get directions from the police, via Tuff, on how to surrender.

 

What makes this such a seminal moment is that for the first time the public heard from the would-be killer before he could kill. He spoke. We will never know what Adam Lanza said or did not say because everyone who could have heard him speak is dead. Holmes and Loughner said nothing because they were already too far gone. The psychosis had erased their true personality. All we have from Seung-Hui Cho is the rantings of his disease that he recorded hours before he killed 32 people and mailed to NBC News. He, too, was too far gone to show anything left of who he really was. His rants have nothing to do with why he killed and the reveal nothing about who he really was. In fact, they directly contradict who he was by the reports of those who knew him when he was still just sick and not yet a killer.

 

But Hill was not that far gone yet. Maybe because he had lived with his disease (according to his brother, it is bipolar) longer. Maybe it hadn’t been that long since he stopped taking his meds. Whatever the reason, there was enough left of him so that when Tuff talked him, he talked back. And slowly, she got him to reveal who he really was.

 

On the 911 call, Hill can heard saying, “he should have just went to the mental hospital instead of doing this, because he’s not on his medication.” Tuff reports that “He said he don’t care if he dies, he don’t have nothing to live for.”

 

He said nobody loved him.

 

And Tuff replied that she did.

 

Was she lying to save her life? Perhaps. We could be cynical like that. But I don’t think so. She obviously came across as sincere enough that Hill didn’t proceed with his “suicide by cop” plan.

 

She also shared her own personal struggles with Hill, which whether she intended it or not was brilliant because it humanized her to him, not that there is any evidence he planned to kill her or anyone else in the school.

 

Take away the gun and you have two people, two human beings, sharing their pain with each other.

 

And isn’t that what we are supposed to do for each other anyway?

 

When I teach rhetoric to first year college students, I focus on pathos, which is the appeal to emotion. Why? Because I tell them that there is one language we all understand.

 

Pain.

 

Every human on earth has experienced pain. It is pain, not joy, that is the only thing in common that all humans have.

 

Sharing our pain with each other is how we form bonds. It is how we humanize each other. It is the vehicle of our empathy, which is the most powerful of human gifts. Not sympathy. Sympathy is a false expression of something you can’t relate to. Sympathy is empty words. You all know that. Empathy is something you FEEL. Empathy is when you feel another person’s pain because it reminds you of your own.

 

Empathy, my friends, is what makes us human. It is what keeps us from hurting other people or when we do it is what makes us try to make it right. Empathy (along with medication) is the greatest enemy of severe mental illness. Because severe mental illness like the psychotic illness make you think the world is against you. It tries to isolate you. But empathy is the enemy of isolation. You stay isolated if the people around you can feel just a little something of what you feel.

 

You may never know what it is like to hear voices in your head telling you you are worthless and that you should die.

 

But you know what that feels like. Everybody has felt it. Everybody has had that moment of darkness where you can’t see the sun rise again. Everybody knows what it feels like to have moments of irrational anger. Everybody knows what it feels like to lash out at somebody that you really love and everybody knows the guilt afterward when you can’t for the life of you figure out why you hurt that person.

 

You may not know the thoughts of someone who is bipolar, schizo-affective, or schizophrenic but you know the FEELINGS. The only difference is that for you it is a moment. For them it is lifelong. You don’t have a disease that can rob you of your humanity. They do.

 

The Jani Foundation provides free social events to kids in the special education classification of “emotionally disturbed.” They are “emotionally disturbed” because they are all mentally ill in some way, but not all them have a diagnosis. Some of them may not get one until they are Michael Hill’s age.

 

But this is what I do know. Even though the vast majority of them are white and male, just like the general profile of mass shooters, I know in my heart that none of them will ever do something like this. I know you will never hear about a kid who went through the Santa Clarita Valley’s ED programs shooting up a building or killing anyone.

 

Why?

 

Because they will not grow up alone. Because of your financial support that allows to put on these social events, currently for K-6 but next year grades 7-8 and the year after that 9-12, the mentally ill children of Santa Clarita will never feel alone. They will never feel like nobody loves them. Whatever struggles they go through from here, they will have their peers and other families to support them. They will have the community which is getting to know them.

 

This is why we preach socialization over isolation. This is why we oppose residential treatment. This is why we do what we do, which is just taking these kids out to a fun event just for them and their families where no one will look at them funny or judge their actions.

 

Because medicated or not medicated (although we believe in medication, not all parents do), isolation will kill. One way or another, it allows the disease to take over.

 

Socialization pushes back against the disease. Every party, every fun event, every playing with their ED classmates tells the disease “We will not let you win. We will not give up on this child.”

 

We’ve only done two events and already I have seen amazing things. I have seen the diseases retreat. At our last event, at SkyHigh Sports where the floors are trampolines, they gave the Jani Foundation group a dodgeball court before I could realize what was happening. Dodgeball is not good for ED kids. They take it too personally. I’ve seen boys get accidentally hit in the face with a stray ball on the playground of the school and try to kill the child who threw it. I watched them go after the poor general ed child with the bad aim and watched multiple instructional aides have to hold them back. I have listened to the string of foul language directed at the other child, words that should come out of no 10 year old’s mouth.

 

Yet, this last Friday at our event at SkyHigh, they had dodgeball. And before I realized what was happening, a boy, the same boy I described above, got hit in the face by an errant throw. Both his mother and myself rushed to the edge of the court, holding our breath, ready to jump in if he went after his fellow ED student.

But he didn’t. He took off his classes, made sure they were cracked, blinked a few times, and put them back on. Then he picked up the ball that had hit him.

 

“Are you okay,______________?” His mother and I asked simultaneously.

 

He looked over at us. No rage.

 

“Yeah.” He turned back to his classmates. “Guys, watch my glasses, okay?”

 

And he went back to playing with them.

 

This is a boy who at school prefers to walk in circles by himself because he doesn’t want to talk to his classmates. He doesn’t “like” them.

 

And yet he was, actively engaging in appropriate play.

 

We had over 20 kids, all from the ED program.

 

And you never would have known that any of them were anything more than just normal kids.

 

That one moment justified everything that Susan and I have worked to bring about with the Jani Foundation. It proved to me that our program, although small and pretty simple, actually works.

 

Assuming we can keep raising money (Your tax-deductible donations to www.janifoundation.org/donate/ make these events possible).

 

Of course, I am sure there will be bumps in the road. I am sure there will be meltdowns and threats of violence at some point. It is a daily battle against their own minds for these kids.

 

But I firmly believe that as long as they are not left alone to play “Minecraft” in the basement, if you ever hear about any of them on the news, it won’t be doing something awful.

 

It will probably be for inventing the next hot video game.

 

Watch your back, “Minecraft.”

 

And watch your back, mental illness.

 

Because we know how to fight back now.

 

You will not win.

 

These kids, these brilliant, wonderful, funny kids, are ours.

 

 

 

Screw It Up (It’s Okay)

“Did you hear what Dr. Phil said?!”

 

I’ve been getting that a lot lately. At first I was reluctant to respond because I didn’t see the episode in question. Being as my time is very limited, there are very few TV shows I will make time for (thank God for DVR). I don’t even watch the shows we’ve appeared on (we still have yet to see the most recent Discovery Health/TLC special “Born Schizophrenic: Jani at 10). I only make time for “Dr. Who,” “Sons of Anarchy,” “Falling Skies,” and “The Walking Dead.” The last one I highly recommend for parents of severely mentally ill children because it is the only show on television that I guarantee will make you feel better about your life).

 

So I did not see the Dr. Phil episode, where, while attempting to tell a young woman with an obsession that she is not “insane” (her words) because, allegedly, “insane” (which is a legal term, not a psychiatric term) people “suck on rocks and bark at the moon.” As such, my fear in commenting on something I didn’t see with no understanding of the context was that I would help to create the infamous “yellow purple monkey dinosaur.” This is a reference, for those of you who don’t know, to how when one person tells something to one person, who then tells it to another, and that person tells another on ad infinitum, what the final person hears is not even remotely close to what the first person actually said.

 

But, having actually been on the “Dr. Phil” show, I knew people were waiting for a response from me. Am I going to take Dr. Phil to task, having actually met the guy? Am I willing to burn a bridge that probably did more to promote sales of January First than any other media appearance?

 

Well, I hardly think I am “burning a bridge.” How many guests does Dr. Phil have on every year? I would be shocked if he even remembered us. Nor do I expect to go back on his show, regardless of what I say. What reason would there be for the producers to ask us back?

 

The first thing you have to understand about Dr. Phil or any other talk show is the sheer volume they must produce. I am sure the producers would love every show to win a Peabody, but when you have to produce 150+ shows a year, that ain’t gonna happen. A lot of what CNN or Fox News says is crap, too. That is what happens when you have to constantly produce content.

 

This is why, I assume, Dr. Phil can do a show with a Wohlenbergs, who were in the “20/20” with us, and attribute their two eldest daughters’ symptoms to a lack of parenting skills, only to turn around two years later when we were on and make some rather cogent clinical observations (like his explanation to the audience of Jani’s “flight of ideas” being a common attribute of schizophrenia), followed a year later by this show where he seems to imply his guest cannot be mentally ill because she doesn’t “suck on rocks and bark at the moon.” So many shows based in between each of those three distinct episodes that you cannot assume that Dr. Phil actually remembers anything he said on a prior show.

Next, how these shows operate is that the producers have a variety of potential stories and who they book depends on who is available at the time they need to tape. Meeting Dr. Phil was for me like meeting Dr. Drew when I went on his show on HLN. I met him literally five minutes before the cameras started rolling. In Dr. Drew’s case, he had to be reminded who I was and why I was on his show. I hold no ill will for this. He was literally prepping for the show as they were wiring his microphone. Dr. Phil is a little more in depth than that but the total time we spent with him was less than one hour (including hours spent at “The Dr. Phil House” and then the live studio taping). In short, these guys are prepping for the show right before they go on (Dr. Phil tapes numerous shows in a single day). As make-up and mics are going on, they are deciding what they are going to ask you and what angle they are going to take. Intros and outros and read off the teleprompter but the Q&A or discussion has only a rough guideline. You answer a huge questionnaire before the show and maybe one or two (or sometimes none) of those questions make it on the air because the host has to ask what they feel are the most pertinent questions that their audience will be interested in while in their earpiece they are being told how close they are to a commercial break. They want quick and punchy statements (which is why I almost always get cut off-I talk too slowly, forgetting that I sometimes less than 3 minutes before the commercial break). For my critics who believed that I mislead Oprah about the allegations of abuse against me, I didn’t. During the “pre-taping,” the producer, filling in for Oprah, asked me about those accusations and I answered. So I was fully prepared to answer them but obviously Oprah, who, like Dr. Phil, makes the final decisions about what questions to ask, decided to skip that. Apparently, there were other questions either she found more intriguing or she ran out of time.

 

Several times prior to taping “Dr. Phil,” the producer asked us, “What help do you want from Dr. Phil?”  I guess that is how the show operates. People come to Dr. Phil for “help” and he “gets real” with him. He had a hard time with us because there was nothing we wanted in terms of help. Having remembered the Wohlenbergs show, our only request was that he acknowledge that brain based mental disorders are in fact very real. But Dr. Phil likes to preach to people (it’s his thing), hence the bizarre, out-of-left-field advice that we had a “sexless marriage” (we don’t) and that we needed to “take time for ourselves.” I guess that was the best he could manage with two parents who weren’t looking for help. We were looking to educate the audience, his audience, which is quite big: over 3 million per episode. Yes, we were overwhelmed but we were overwhelmed by Jani’s illness in the same way a parent of a child with leukemia would be overwhelmed by it. And we are advocates. This is what we do. To be an advocate, you have to be somewhat functional, which pretty much rules out most of Dr. Phil’s guests.

 

I told you all of that to give you some context about Dr. Phil and other celebrity doctors. Ultimately, they are entertainers. That is their job. So the first thing I have to say is if you are taking life lessons from Dr. Phil or Dr. Oz or any of these other celebrity TV doctors, you really need to get out and experience the real world a bit more. They are not there to “educate” you. They are there to entertain you because you watch Dr. Phil for the same reason you watch the Kardashians or Honey Boo-Boo: deep down, in places you don’t like to admit to, you like watching a train wreck. Part of it is natural human curiosity (why do you slow down to look at a car crash on the freeway?) and part of it is that it makes you feel better about your own life. These shows are a distraction from YOUR pain and YOUR suffering.

 

There are already plenty of advocates writing that what Dr. Phil said was horrible and reinforces stigma. And they would be correct. So I am not going to beat that dead horse again. For me, what is more important than what he said (because I guarantee you he doesn’t even remember saying it-it should not be taken as what he believes or doesn’t believe) is how the audience reacted.

 

They laughed.

 

Apparently, the idea of a person sucking on rocks and barking at the moon is amusing to them. Even though if a person actually was doing this they would be seriously disturbed and in desperate need of psychiatric care.

 

I suppose the image was funny.

 

Or….is it that people laugh when they are uncomfortable?

 

Come on, you remember high school! How many times did you chuckle at an act of bullying? You didn’t laugh because you’re an asshole. You laughed because you didn’t know what else to do. You didn’t know how to respond. You were afraid. So you half-chuckled because every one else was doing it and you didn’t want to stand out from the crowd.

 

Unfortunately, severe mental illness is not sucking on rocks and barking at the moon. If it were, the entire Jani Foundation and my advocacy would be unnecessary. Sucking on rocks and barking at the moon is weird… but it isn’t going to hurt you or kill you.

 

Severe mental illness does. It destroys your brain, everything that you were, are, and ever will be. It makes you cut yourself, smash your head into a wall and not feel any pain, and in general reduces you from a functioning human being to something you step over on the sidewalk and, in reality, fill your prisons.

 

In short, it takes away your control over the one organ in your body that actually gives you any control at all.

 

It takes away you.

 

And it will do it long before you realize it, if ever. You will think you are fine. But you are not. Friends and family will drift away. You will come to fear everything. If you are able to get yourself help, it will probably be anywhere from 18 months to a DECADE before you actually get any treatment.

 

Mental illness kills slowly, so I guess we can wait.

 

So, no, I am not going to take Dr. Phil to task for something he won’t even remember. The bigger issue is not Dr. Phil. It is the audience that laughed at what he said, and, by extension, the millions across the country who laughed at what he said. Not because they were bad people but because they didn’t know what else to do. It was like being back in high school and watching the scrawny kid get bullied all over again.

 

Back in high school, why didn’t you say something?

 

Fear? Not wanting to get involved in a fight that doesn’t concern you?

 

Yeah, that’s what the Germans did from 1933 to 1945.

 

It’s like that famous quote by Edmund Burke that everybody loves and attaches as their email signature but few actually act upon it:

 

The only thing necessary for the triumph of evil is that good men do nothing.

 

It’s okay to be afraid but you can’t let that stop you. Because the lives of mentally ill children and adults depend on you NOT doing nothing.

 

You think I always know what I am doing when it comes to Jani’s schizophrenia? Most of the time I am feeling my way in the dark. I have screwed up time and time again and will continue to, but I have to keep going because she is my daughter.

 

My point is that if you try to help those with severe mental illness, you will f*ck it up. Probably more than once. Human relationships are never perfect.

 

But it is the effort that matters.

For context, article by Pete Earley: http://www.usatoday.com/story/opinion/2013/07/31/pete-earley-and-doctor-phil/2596369/

and Janine Francolini: http://www.huffingtonpost.com/janine-francolini/dear-dr-phil_b_3684665.html?utm_hp_ref=fb&src=sp&comm_ref=false#sb=877486b=facebook