Month: March 2010

American Idiots (But It Should've Been Right)

[video:

100×100]

 

 

In the United States, only a handful of hospital admissions are caused by trauma: car accident, gunshot wounds, etc. Most inpatient medical hospitalizations fall into two categories: One, you feel sick, so you go to the ER. There you are triaged, tests are run, and a likely cause of your symptoms is identified. If continued observation is necessary, you are admitted as impatient. If the condition is not considered to be life threatening or can be monitored on an outpatient basis, you are sent home.

 

The purpose of triage is to identify the likelihood of the symptoms to kill you, at least in the short term.

 

Two, you go into the hospital because you have a chronic condition that requires, for a period of time, close observation and more aggressive treatment.

 

Psychiatric hospital admissions, on the other hand, require something very different.

 

They require what is called an “incident.”

 

In other words, something really bad has to happen first, something that reveals a level of mental functioning so impaired that the individual is now a danger to him/herself or others.

 

Imagine, for a moment, that you have cancer. If cancer patients were treated like psychiatric patients, they would be told this: “Yes, you have cancer of the liver. But let’s wait until it metastasizes into your bloodstream before we start treating because, frankly, the insurance company isn’t going to approve admission just for stage 2 cancer of a critical organ. So if your cancer gets worse, then come back.”

 

Traditional medicine is about preventing the progression of a disease through aggressive treatment. Psychiatric medicine (at least within the inpatient system) is forced to allow the disease to progress simply because they know the insurance company won’t pay until there is an immediate threat to life and limb. Inpatient psychiatrists cannot step in and utilize preventative therapies (which is often just a place to feel safe, a break from the stresses of our world) to forestall a psychotic or major depressive incident. Medical doctors can say “Cancer is present. We should treat it even though it is only Stage 1.” Psychiatric doctors have no such freedom. They cannot say “This child has schizophrenia and is showing the early signs of a psychotic relapse, so let’s treat them.”

 

For those of you who attack psychiatric doctors for the exponential increase in the use neuroleptic drugs, you are targeting your vitriol in the wrong place. The doctors are pawns, all right, but they aren’t pawns of the pharmaceutical industry. At the end the day, it is Astra Zeneca signing doctor’s paychecks.

 

If a practicing psychiatric wants to get paid, or the hospital to which he or she works for wants to get paid, there is only one way they are going to get their money: If the patient’s insurance provider decides they are going to pay.

 

It is the insurance companies that want drugs. Well, not at first.

 

At first, their most preferable outcome would be a behavioral problem caused by external forces. Then they wouldn’t even have to pay for drugs.

 

Are you aware that when a psychiatrist talks to an insurance carrier for approval for treatment, especially inpatient, they are interrogated by the “doctor” in the employ of the insurance company, despite the fact that the doctor employed by the insurance company never has and never will meet the patient. The job of the insurance doctor and the purpose of the interrogation is to plant whatever seed of doubt that they can that the patient’s condition is not a psychiatric illness. They don’t suggest physical causes, of course, because their company would still be on the hook for that. No, they interrogate the doctor, questioning the diagnosis and symptoms, doing their best to suggest that some external factor is causing the symptoms, and of course the primary external force is always the parents. This is why I have yet to meet a father of a mentally ill child, primarily of a girl, who hasn’t come under scrutiny at some point for sexual abuse. When you are have a mentally ill child and are insured, the insurance carrier is going to pore over everything you as a parent do, looking for any sign that you are causing your child’s symptoms. I would have no issue with this if they did it for the right reason, but they do it because if they can prove the parent caused the child’s condition, then they are off the hook for paying. Strangely, this does not apply with medical illnesses. If your child shoots themselves in the face because they found your loaded gun lying around, the insurance carrier will still pay for the surgeries to repair your child’s face. They will not debate with the doctor if treatment should be rendered because the injury is due to the negligence of the parent. If your child has such severe diabetes to require the amputation of a foot, the insurance carrier will not interrogate the doctor about the parent’s dietary habits before authorizing payment.

 

 

Eventually, though, the doctor, over time, manages to convince the insurance company that what they (the treating physicians) are seeing is not a behavioral problem caused by an external factor but psychosis. Example, “Well, Dr.Douchebag at Blue Shield, I am pretty sure that chewing on furniture until her mouth bleeds, saying it makes her teeth feel better, is probably not the result of negligent parenting. I hate to say it, but neurotypical people just don’t tend to harm themselves thinking that it feels good.”

 

“Well, shit,” Dr. Douchebag at Blue Shield responds, “are you sure about that?”

 

“Pretty sure. The patient insists she cut up her brother’s toy with a knife and, well, that never happened. You know, I am just a board certified psychiatrist and I could be wrong but that shows a pretty clear break with reality.”

 

“Fine, then. So what drugs are you trying?”

 

“Well, I would really like to be able to observe her for a few days…”

 

“No way. If she is not receiving medication then she is not undergoing active treatment and doesn’t need to be there.”

 

“She tried to jump out of her bedroom window before she came in.”

 

“Then find a drug combination that keeps her from wanting to jump out her window.” Or, more likely….”Is she talking about jumping out her window right now?”

 

“No, Dr. Douchebag at Blue Shield, she isn’t. She says that one of her hallucinations wants her to jump off the roof but she is not sure if she wants to listen or not.”

 

“Well then, she is able to make decisions. Let her go.”

 

“I really don’t think that is a good idea. The hospital is a very different environment from the outside world. Kids generally do better in here because they are not exposed to the stressors of the outside world.”

 

“Like the parents?” Dr. Douchebag asks hopefully.  “Maybe you can refer them to some classes on how to raise a ‘difficult child.’”

 

“She’s not difficult. She’s psychotic,” the UCLA doctor patiently answers.

 

“Well, what about all this media attention this kid’s been getting: LA Times, Oprah. You know, we here at Blue Shield saw that ‘20/20’ episode. It was all about how we keep cutting off benefits. Any chance that this kid might be reacting to all these cameras following her around?”

 

“Well, then I would think that she would stay in her room and try to avoid them, not think about jumping off the roof.”

 

“But it could be stressing her out?”

 

“Again, she talks of one of her hallucinations that likes to jump off buildings and wants her to do it too.”

 

“Well, maybe suggest to the parents that it could be doing more harm than good.”

 

“I am pretty sure the parents went to the media because they weren’t getting any help. They seem to be deeply concerned with their daughter’s welfare.”

 

“And what is this crap I hear about the father interacting with her hallucinations?”

 

“Well, actually, Dr. Douchebag, there is no handbook on how to deal with a psychotic child. The father feels that it is the only way to reach is daughter and I have to say that in my observations, she talks about them a lot. It is pretty hard to engage with her if you don’t interact with them. Also, interacting with them makes her trust us enough to tell us what they are doing or telling her to do.”

 

“Yes, but he could be encouraging her.”

 

“She is not choosing to have these hallucinations, Dr. Douchebag. They exist independent of our world and anything in it. I really don’t think it is possible to ‘encourage’ somebody to see something that isn’t there. After all, I could tell you that you possess a human heart and concern for the welfare of a child over how much money your company can save until I am blue in the face, but it won’t make it true.”

 

“True enough. What about your outpatient program, ABC?”

 

“They won’t take her. She is too psychotic. She would need to be able to sit and focus for three hours and now we are lucky if she can focus for five minutes. It’s not easy to focus when you are seeing hallucinations swirling around you all the time. You do know she hallucinates 95% of the time.”

 

“What about residential, then?”

 

“There are no residential options for a child her gender and age in the state of California.”

 

“They could send her out of state. That is even the recommendation of your local Department of Mental Health.”

 

“She’s seven years old, Dr. Douchebag, and quite attached to her parents.”

 

“Well, I don’t know what the hell they expect. We can’t keep paying for her inpatient stays when there is a perfectly good Deveroux facility in Texas or Florida. She could be either a Longhorn or a Gator!”

 

“But wouldn’t you still have to pay for her care there?”

 

“Oh, hell no! We’re Blue Shield of CALIFORNIA! The insured’s coverage won’t even work outside the state. The state would pay for the whole thing.”

 

The above was my imagining of a conversation between Blue Shield and Jani’s doctor at UCLA. I am exaggerating for effect, but not by much.

 

As my last two blogs had indicated, Jani had been slipping for awhile. This was not surprising. Winter is always Jani’s most difficult time. Psychosis is like the tide. It tends to go out in summer and then come in during the winter, reaching high tide in late winter/early spring. Almost everybody I know with a mental illness is struggling right now, and some finally reached their breaking point. Chrisa, who writes the “Mindstorm” blog which you can find on my “Resources” page, lost a friend to suicide this past week, as well as a friend of mine from high school whose college roommate committed suicide on Monday. Both are casualties of war. Yes, they will killed by their mental illnesses but if I could I would put the insurance companies on trial for collaborating with the enemy. They are the Vichy government of American mental health care, the UN security council who prevented the peacekeeping forces from protecting Tutsis in Rwanda, and the Sudanese government who allows the atrocities in Darfur. My friend from high school told me today that her insurance benefits only allow one more month of therapy for her. Chrisa was once told by a doctor to give her son up to the care of the State of Illinois in order for him to get the care he needs. In Texas, you can’t get Medi-Care benefits for your mentally ill child unless you give him/her up to the State, a State better known for executing the mentally ill than helping them.

 

I suppose in Texas they believe that if you can’t take care of your child’s mental illness alone then you are just unfit to be a parent.

 

And people want me to move my family to these states just so Jani can be placed in one of these residential facilities located there and we can still see her?

 

On Monday, March 15th, I finally called to request a direct admit to UCLA for Jani. The head of the child and adolescent psychiatric unit called me back and I explained what was going on: Jani was losing enjoyment in things she used to love. She was screaming at Bodhi and throwing things at him when he started to cry (something she hasn’t done for awhile). She herself said her hallucinations were getting stronger and they were “bothering” her. Finally, there was the incident where she insisted she had taken one of Bodhi’s toys and cut it up with a knife, something that never happened. What happened in reality was that she tried to break one of his trains in half, couldn’t do it, and gave up. Yet she was convinced she had cut it up. Looking back now, maybe she needed to believe this to satisfy the voices in her head that wanted her to hurt Bodhi because he had picked up her toy slinky.

 

The doctor told me that all that was troublesome but that it wouldn’t pass muster with the insurance company. They needed a specific incident of her either hurting herself or someone else, preferably Bodhi. I couldn’t believe it. The doctor was subjugating his best judgment as a 25 year veteran psychiatrist to the will of Blue Shield, who would not consider Jani “acute” until she actually committed an act of violence, either against herself or Bodhi. Never mind that such an act of violence could very well be irreversible. What amazed me was that the doctor admitted Jani needed to come in but acknowledged he couldn’t convince Blue Shield of this.

 

Who controls health care in America, people?

 

Luckily, I suppose, the next day Jani started saying that “80” was jumping off buildings again. There are many hallucinations around Jani all the time and most are harmless but whenever 80 appears, she always jumps from high places. I called the doctor again and this time he decided to go to bat to get Jani inpatient.

 

She was released yesterday. During the seven days she was there, the UCLA doctors spent countless hours on the phone with Blue Shield, trying to convince them that Jani needed this hospital stay. On Tuesday, the day before Jani was released, I got a call from a “care advocate” at Blue Shield. These are psychiatric nurses who work for Blue Shield. Unlike the “doctors” who work for Blue Shield, they are not douchebags. But I knew exactly why she was calling. I received the nicest interrogation I have ever experienced. For that’s what it was: an interrogation. When the insurance company calls, they are looking for anything they can use against you. If you knew what was going on, you’d demand a lawyer. At first, the questions are innocuous. She wanted to know if Jani is still seeing her outpatient psychiatrist and therapist (because failure to follow discharge orders is something they can use) and how often. Once a week for psychiatrist and three times a week for therapist, I answered. Are they helping? As much as anyone can.

 

It is important to stay upbeat and positive during the conversation. You must come across like you have it all under control. Any sense of despair or gloom becomes fodder to push for residential, which everybody wants anyway. The conversation always comes back to my marriage, how Susan and I are doing, do we get any time together alone, etc? Most of the conversation focuses on are “we” getting what we need. This is not altruism. This is a trap. Blue Shield is looking to see if we are cracking under the strain, because if we are, then we are either part of the cause of Jani’s condition, or an easy argument for why she needs to go to residential.

 

I am not going to put my daughter in residential just so Susan and I can go on fucking date.

 

Most important in these interrogations, other than staying cheerful and upbeat, is to have “goals.” My goal is to try and get Jani through the summer without having to go back to the hospital. With Blue Shield, the “doctor” is the bad cop and the “care advocate” is the good cop, but they both want the same thing. They want us to confess to something that will allow them to stop paying for Jani’s hospitalizations.

 

By the way, I chose Blue Shield HMO from my work because, and only because, they had no limit on impatient hospital stays. All PPOs do.

 

Yesterday, before we picked up Jani, we had to attend yet another IEP for Jani. It was depressing to read on the IEP that the Department of Mental Health’s recommendation is for residential placement and that is also the school’s recommendation. To the school’s credit, they have accepted our refusal to send her to out of state residential placement and have worked to come up with novel solutions to Jani’s inability to function in school, unlike DMH who simply washed their hands of us when we refused their offer of placement in Texas or Florida.

 

Jani is home again now, sleeping as I write this. There was no change to her medication during her week in UCLA. What I wanted from UCLA and what I got was a break for Jani from the stresses of our world, like going to school. Jani seems recharged, although she is already slipping back into psychotic behavior. All we can do, us and the interns, is to keep going. UCLA won’t take her back. Blue Shield won’t allow it.

 

Not that I don’t miss her terribly when she is gone. But right now it is hard to remember her successes, and our successes, what she has learned about herself and what we have learned in how to help her.

 

It is hard because everybody, from UCLA to Blue Shield to the school district to Jani’s therapist advocates residential, not so much for her but for us. None of them think we can make it if we keep Jani with us, They ignore everything we have already done, such as getting two apartments, creating the intern program, interns that are Jani’s only flesh and blood friends.

 

But then, sometimes, I express my doubts that any of it is enough. I wonder if Jani is teachable. I wonder if Jani can function. I wonder if we can survive her.

 

I shared some of this with Jani’s therapist today and she told me, gently as she could, to think about residential. It felt like a betrayal, but I kept my emotions in check. She pointed out, correctly, that my body is breaking down under the strain of keeping Jani going. My body is not strong enough for her mind.

 

I nodded, but said that I couldn’t. I have many friends who eventually sent their kids to residential. I don’t judge them at all. In most cases, it saved both the child and the family.

 

But I can’t do it. It would be like cutting off my own arm.

 

Then my therapist mentioned, of all things, “that hiker who had to cut off his own arm.”

 

She was referring to Aron Ralston who, after becoming pinned under a boulder in Blue John Canyon in Utah in 1993, finally decided, after seven days, to cut off his own arm to free himself.

 

I think she said something to the effect that he did what he had to do.

 

It’s not quite the same thing. It was Ralston’s arm pinned under that boulder, not his daughter.

 

Would I do the same thing?

 

If Jani and Bodhi and Susan were waiting for me, yes I would. In a heartbeat. If they were on top of the canyon and all I had to do to get back to them was cut off my own arm, I would do that. I am not about to die for nothing. But if Jani was down there in the canyon with me, I would not. I could not. Because it is not my arm that is pinned under the boulder. It is hers. She is pinned under schizophrenia. I am not going to leave her here.

 

Susan is down here with me and so is Bodhi. The three of us are not enough to move the boulder. So the interns have come down into the canyon with us to help. They are pushing too. We are all pushing as hard as we can, but nobody is pushing harder than Jani.

 

I am not coming out of this canyon until Jani comes with me.

 

And everyday there are more people coming into the canyon with us.

 

[video:

100×100]

Still Haven't Found What I'm Looking For…

I’m cracking up. I didn’t realize it until today. I had started dinner for Jani and us, then had to rush out to take our dog Honey around the apartment complex so she could do her business. Jani was in Bodhi’s apartment with Bodhi, Susan, and a new intern. I was rushing because every time I am away from Jani I am always afraid the world will end in my absence. Or at least Jani’s world, which would take my world with it. I am always scared. Terrified is a better word. Not for what could happen to me. When Jani is with Bodhi, there is always a perpetual state of fear. Any number of things could go wrong. Bodhi might pick up one of her toys that she brought with her. We have tried to get her not to do this but a toy, usually a small animal toy, is like a security blanket to her. If Bodhi so much as touches her toys, she reacts even before we have realized what Bodhi has picked up. She will surge across the room and hit him before we have even had time to process what is happening. She is convinced that he will teeth on her toys and that his teeth with destroy them, even though Bodhi is pretty much beyond putting things in his mouth now. But like most toddlers, he is tactile and curious about anything he hasn’t seen before, yet such curiosity is dangerous for him. This is main reason why we got the two apartments, so Bodhi could explore his world without constantly being shut down by Jani.

 

Or he could knock over a bowl of food or a cup of water (we got rid of all glass), or worse yet, Jani’s water which she leaves around, causing her to lash out at him, punish him, even though we punish neither child for such things.

 

Or she might just be trying to express affection but in hugging him she will grab him around the neck.

 

Every time Jani is in Bodhi’s apartment (Jani will not allow Bodhi in her apartment so the only way to have dinner as a family is in Bodhi’s), while one parent cooks dinner, the other must hover between the two children, ready to intervene should the voices in Jani’s head sting her into hitting Bodhi. This leads to us even having to hover while she gives him affection, never sure if she is going to hug him or hit him or a combination of the two.

 

But once dinner is cooking (back burners only-front burner plates are removed for safety), one of us has to leave the other alone to take Honey out. I used to be able to do this with Jani. Jani used to love going on walks with me and Honey. Later, she would at least come along to take out one of her “friends” to go to the bathroom. Now she won’t come at all. To force her to come is to risk her attacking Honey or melting down in the parking lot, leaving me unable to take Honey and carry Jani back at the same time. Which reminds me, every time we go out in public with Jani, there is a risk, both to her and to others. Jani’s vision is, to our best guest, like having to watch two movies playing over the top of one another, meaning that it takes Jani supreme effort to focus on either one of the movies. One move, of course, is our world. The other is hers. She does her best to pay attention to both, which shows her incredible strength, but it takes all her effort just to focus on the humans interacting with her that she literally cannot see cars in the street or people in front of her. Crossing from the car to any public place requires somebody to hang on to her in case she breaks away suddenly, in case she forgets that our world contains large objects like cars that can kill her. Once in the public space, we must hover to make sure she doesn’t hurt some innocent child who asks to play with her. She wouldn’t hurt them badly, but she can hit them. Last week at a McDonald’s, a woman said to me “I hate to tell you this, but your daughter said ‘I hate you,’ to my son.” I had heard her. I felt terrible. But what could I say? I have no power to stop her. It is not an issue of Jani not knowing how to be polite. When she is not psychotic, she is incredibly polite.

 

This, by the way, is one of the ways in which you can recognize psychosis. It alters the personality.

 

I can, and have, taught Jani to be polite all her life, and she was once, and still, on occasion, is. But my corrections to her behavior pale when compared to whatever is inside her head. She can distantly hear my voice. She knows she is wrong. But she can’t help it. Lately, I have noticed that after such an incident, Jani will ask to leave. She won’t say anything about the incident, but I wonder if she is trying to remove herself from what can trigger her psychosis. But this also has the side effect of isolating further from other children. Adults will still let her odd behavior slide, because it is pretty obvious now that she acts younger than she is. Maybe they just think she is tall for her age. She acts like a four year old but has the language ability of a teenager, except that she is starting to slur her words now. Whether this is the psychosis or the medications designed to fight it isn’t exactly clear..

 

I am trying very hard to live with Jani’s illness, to make my peace with it, but the fear never goes away. Until Jani is in her bed and asleep, I am never free of the fear.

 

Not that I don’t fantasize about running away from it. I teach two days a week, meaning two days a week I go to CSUN. At the end of my classes, when I reach my car, it takes everything I have to turn the ignition. I don’t want to go home. I don’t want to be responsible anymore. But I have to. Jani is without me and she needs me.

 

What the hell does that do to a person, to reach the point where you dread going home to your own child?

 

So tonight I rushed out with Honey, unable to let her take her time and enjoy her walk, feeling guilty that she doesn’t get the trips to the dogpark that she used to get, or the two mile walks I used to take her on, at the same time, hating that I couldn’t just enjoy the evening, feeling like the minutes that I took to walk Honey around the complex was the equivalent of stepping out of the room while a dying person begged you for help.

 

I had to recharge, but to take time to recharge, even a moment, is to risk that one or both of my children will be hurt while I am gone. We have approximately 10 interns now, and a few days a week there is more than one intern on shift at a time. It is like a party for Jani, two, three, or even four people all focused on keeping her engaged. This is the first time we’ve ever had somebody to spell us for awhile. The only time I ever see Jani happy is when she is with her interns. But to relax for even a moment, to breathe, is dangerous because my reaction time slows. I feel a creeping apathy, a desire to lie down in the road and never get up, while at the same time feeling guilty because I can feel myself beginning not to care.

 

Next comes the paranoia, the feeling that close friends have failed Jani, failed us, that people I thought I could trust I can’t. I pingpong back and forth between the emotional extremes of apathy and paranoia.

 

Minor issues become significant. Instead of focusing on all the people I have brought together in the online support group for parents of mentally ill/spectrum kids I created, instead of focusing on the emails and people I personally know commending me, I focus on the ones who leave the utopia for mentally ill kids I am trying to create or the ones who criticize what I feel I have to do (hence, my bad reaction to the 20/20 episode). Soon I start to alienate people, blowing insignificant things up into personal slights. On a related note, I am pretty sure at this point that everybody related to the 20/20 episode from the other families to the producers are angry with me. The producers spent huge chunks of their lives over the past eight months working on this and really tried to do justice to the story and I privately pissed all over it.

 

When Jani does come home from being with the interns, or I come back from teaching, my reaction times are slow. I can see Jani moving to Bodhi, see what is going to happen, but be unable to respond in time. I stand there dumbly while Susan or an intern jumps in.

 

Next, I become indecisive. I spent three years making the decisions on Jani’s care. I fought all the fights to get her what she needed. Then suddenly I can’t muster the energy to continue. It all feels so pointless. If she goes back into the hospital, what can they do? They have tried all the meds. If she is not doing well in her hour a day of school, what can I do about? I have brought up ideas but nothing seems to work. The interns who sometimes go to school with Jani tell me that her teacher is disengaging, making minimal effort to teach Jani. I can understand this. Jani is practically unteachable now, and this teacher has already been teaching special ed severely emotionally disturbed kids for six hours. You can say you are going to keep going all you want but there is only so long hitting your head against a wall before you are knocked unconscious. I don’t blame her at all. Nor do I blame Jani. How can she learn when hallucinations swirl around her head? I don’t blame anyone anymore (much to Susan’s frustration, I think). She complains about the school and I am not sure what she wants me to do. I am not sure what to do anymore. I have no sense of certainty anymore. I used to, and the irony is I will still bitterly defend my methods for keeping Jani going (like interacting with her hallucinations), as well as believing, rather arrogantly that I am right and that if everybody would just listen to me I could save all these kids, and my daughter would have others like her and she would re-engage with the world.

Not that any of that is true. Jani doesn’t exactly react any differently when she meets a child with schizophrenia than she does to meeting a neuro-typical kid. Unless they have her sense of humor, and only me and some of the interns do, she will not engage.

 

Finally, I sink into despair, unable to muster the energy to even get out of bed, and I don’t until Jani hits me hard enough that I wake up.

 

I am not sure what caused this. It started long before the 20/20 episode aired, although that was a trigger. I hated seeing Susan and I fight all the time on camera. I hated seeing the other families pass judgment on what I have had to do to keep Jani alive, which they have done a few times before the show even aired. Both Cinnamon and Jennifer attacked me a few months back when I was so desperate for money that I was asking friends on Facebook (although not them) for any financial help they could give. I never understood why both of them jumped at me on that. It had nothing to do with them. I don’t know why I became to kicking boy for the other two families profiled in the 20/20 episode (especially since it was Susan and me who brought 20/20 to THEM).

 

You would think I would be focusing on all the other families who share my vision of mentally ill kids and families together.  You would think I would be focusing on the incredible things the ABC News producers said about me. I can’t even remember them. All I can remember is that I got criticized by a nine year old on camera, which is ridiculous I know, except that I saw this girl as another daughter. I comforted her when she knocked one of Jani’s baby teeth out in the hospital. You would think I would be focusing on the mother of a schizophrenic girl who called me a hero. No, I am focusing on the ones who attack me, which is in and of itself a sign that my mental state is breaking down.

 

I think it started when I started writing the book. Having to go back and recall Jani’s sudden decline ripped me open more than I expected. And that was just the basic events of the last three years of our lives. I had a series of events but no story. It took me a while to realize that the story was basically my relationship with Jani, which then required me to go back and remember the happy times before her illness came, when she was my little girl.

 

And that was even harder. I think that started to break me because it reminded me, painfully, of what I lost and what I will probably never get back. I know my daughter is still in there somewhere. She comes out every so often. But she has been so changed by the schizophrenia. I want the innocent little girl back that I had. I had to remember all the things I was able to teach her from 18 months-4 years, when she was a sponge, and to realize, painfully, when I ask her what she did during her one hour of school, that everything she “learned” was things I taught her years ago. It is like Jani’s mind is full now and has no ability to take any more knowledge, or the illness won’t let her learn, won’t let her practice, won’t let her fail or succeed. Everything that is left of Jani I taught her and she is still running on that now in the second grade where she refuses to learn anymore or do any of her work. I wonder how much of her IQ has been destroyed.

 

It is like watching Rome burn. Jani was my empire. Not this. Not the LA Times, Oprah, 20/20, the book deal. All that is just the chronicle of the destruction of what I built up, what I loved, and now I must watch her struggle to express any emotion at all.

 

If you are angry at me, I am sorry. If you think I am not the person you thought I was, I am sorry. I was only trying to save my daughter. I am still trying to save my daughter. But with each passing day it gets harder to see my little girl inside the schizophrenia.

 

Sometimes it is even hard to love her, on the surface level. Not on the deep level. On the deep level, I have been more than willing to trade my life for hers numerous times. I have tried bargaining with God on several occasions but God wouldn’t accept.

 

I love her overall, but minute to minute, second to second, it gets hard because she is black hole that sucks up everything I have to offer. At times like this, when Jani is slipping, there is nothing I can do to make her happy. And it makes me despair.

 

Today, I spoke to my father. He didn’t see the 20/20 episode, so I explained to him much as I did in the last blog: one girl got better, one got worse, and one stayed the same, which Jani being the latter. I told him it was depressing to see her end the show, which took eight months to film, the same way she started it. I felt that was a negative.

 

But my father disagreed. “Mike, if she hasn’t gotten any worse, that’s not a negative, that’s a positive.”

 

It took several hours for the old man’s words to sink in: She hasn’t dramatically improved like Becca, but she also hasn’t gotten worse. She is still better than she was a year ago.

 

Was my father trying to tell me that Susan and I had actually managed to hold the line? Was he trying to tell me that maybe I am further up this mountain with Jani than I realize?

 

I think Dad snapped through the paranoia. I know he hates me talking about him on my blogs (he had the misfortune to hear about my suicide attempt for the first time on the Oprah Winfrey Show), but he is also one of the few people I trust because he has no agenda (ironic, considering I do). Other than Jani and Bodhi, my father is the only person on earth that I am truly afraid of disappointing. What he feels about me means a lot.

 

I think perhaps my father, in his own way, was trying to tell me to remember what I have won, not what I have lost.

 

[video:

100×100]

44 Million Miles (Not Fade Away)


 

This is my first blog entry in nearly two months. I don’t even really remember where I was nearly two months ago. I know where I was physically, of course. That never changes. But I have come to realize that my blog is my emotional memory.  By necessity, we must live in the present, so I am unable to hold onto how I felt yesterday let alone two months ago. Part of that is the stress of always trying to keep Jani at least somewhat present in our world. Why is this important? Certainly it is true that there is a risk to her safety when she is constantly seeing hallucinations that can jump from buildings and be fine, defying the physical limits of the human body. But that really isn’t the main reason we don’t let her go completely into her world. The main reason is that her happiness, when she is truly present in our world, is profound. It is the only time she smiles, that huge smile that she used to give all the time when she was two years old. Jani cannot experience happiness on her own any more. She hasn’t been able to do this for years. We have to go in and get her, gently teasing her slowly into our world, letting her hold on to her hallucinations like a security blanket, so that she can experience happiness. We have to manufacture Jani’s happiness, or at least manufacture opportunities for it to happen. All the time. Every day. Every moment.

 

Being responsible for someone’s happiness is a far greater burden than being responsible for someone’s life.

 

My last blog entry I believe had something to do with the frustrations of trying to communicate what Jani experiences. In the last week, it has gotten easier to just say “Watch ABC this Friday at 10pm.”

 

I still haven’t seen it, by the way. As I write this, it still has not aired on the West Coast.

 

However, I am already getting emails from parts of the country where it has already aired. Most express support (thank you), a few still try to convince me that Jani is possessed by spirits (don’t waste your time), some try to convince me that Jani has special powers to see alternate worlds and plains of existence (so what if it kills her?), some actually think they are sharing some new revelation with me (I have heard all the gluten/dairy/sugar/preservatives, etc. before) and some, the most painful ones, are those that immediately dash off to their computer to write to me, desperately wanting to share what they are going through RIGHT NOW with their child. Those are the emails that make me want to reach through the computer screen and grab their hand and tell them that they are not alone and that this is not just about saving my child but saving yours as well. Even if Jani miraculously got better tomorrow, I would stop working to save your children either.

 

After that last line, I took a break for an hour to watch the 20/20 episode. I am still not entirely sure how I feel about it. Three families. Three girls.

 

This little girl got better on Saphris.

 

This little girl got separated from her family and sent to Colorado.

 

And this little girl didn’t change at all.

 

My little girl is, of course, the last one. Jani was the through-line of the entire episode while the other two went up and down. Jani was the constant while the world tilted on its axis around her. Storms raged and blew themselves out and Jani never stirred.

 

In a way, I suppose, that is a good thing. As much as Jani’s schizophrenia isolates her from the benefits of our world, it also isolates her from its negatives. Unlike Becca and Brenna, Jani’s hallucinations are not terrifying. They never have been. Schizophrenia is as unique as the brains it infects. No two schizophrenics will have exactly the same symptoms, which is why it is so difficult to diagnose. Its only common thread is sustained hallucinations lasting at least six months (Jani’s have been observed for nearly five years now and as the home videos of her as a baby showed, probably always existed). The fact that Jani’s hallucinations, unlike most others with schizophrenia, are not terrifying to her is both a blessing and a curse. It spares her the terror that Becca experienced (and Brenna still does, as far as I know) but also makes her illness far harder to treat.

 

I was particularly struck by Becca’s statement that I shouldn’t interact with Jani’s hallucinations, not because I was offended, but because it truly showed that despite both girls having a diagnosis of schizophrenia, a huge gulf exists between them that I could never close. Becca cannot understand that unlike her, Jani does not resist her hallucinations. And if she does not resist them, what good does it do me to resist them? To do so, to deny their existence, would simply drive a wedge between me and Jani, and that is ultimately what I am trying to stop. I am trying to get my daughter back and so far, I know that Susan and me are still more important to Jani than her hallucinations. I don’t want to risk that by challenging that which I know is stronger than I am. You don’t pick a fight with somebody bigger than you. I also don’t want to make Jani’s life in our world a living hell by denying the existence of her world. I suppose this means, and perhaps what the 20/20 episode clarified for me, is that I am trying to coexist with Jani’s schizophrenia. I am trying to share her with it. Because I have to. It is the only way to have any relationship with my daughter. It is the only way I can show her that I love her.

 

There were three distinct outcomes, but only two decisions. I know that Cinnamon tried countless medications and that Becca has spent almost as much time in the hospital as Jani. But in the end, it felt like Cinnamon got lucky. The last of a long line of medications, Saphris, finally worked. Cinnamon got her daughter back. If I am truly honest, the strongest emotion I feel right now is jealousy. Cinnamon got her daughter back. Of course I am grateful that Becca is no longer tortured like she was.  Of course I am thrilled for her recovery. Maybe jealousy is not the right word. I am envious perhaps. I want my daughter back, too. As happy as I am that Becca got away from this terrible disease, at least for the time being, I am also saddened that my daughter hasn’t been able to follow her. You don’t know how much I wish Jani and Becca could play on the same softball team. But they aren’t even on the same planet anymore.

 

The Wohlenbergs made a decision that I simply can’t make. I flat out refuse. Please don’t think for a second that I think they made the wrong decision. They did not send Brenna away because it was easier for them. It divided their family, and who knows if Brenna’s illness will ever allow them to come together again. I know what it is like to have a family divided. No, they sent Brenna to Colorado because it was the kindest thing to do for her. The poor girl was tortured by fear of what she might do to her sisters. Forcing Brenna to stay would have been more torture. At least that stress is gone from her life. I still struggle though to reconcile where Brenna is now, in terms of her mental state, with the sweet girl who eight months ago, at Jani’s seventh birthday party (which you see periodically in the 20/20 special) said, after I said something wacky to Jani, “You’re silly. That’s okay. I like silly people. People say I am silly, too.” I don’t know if the Wohlenberg’s can understand this, but I feel like I lost Brenna too. In that moment nearly nine months ago, I really thought that I could save them all. Call it arrogance. I really don’t care. It’s not. It is that I saw the sweet girl inside the illness, and thought maybe I could, as I have been doing with Jani, keep it at bay in her. I thought I could save Brenna’s innocence. I wanted to save it. But it took it anyway. I wasn’t there to see what you saw tonight. I didn’t see those desperate moments in the Wohlenberg house. Having seen them now, I feel totally inadequate. I feel like the demons inside Brenna laughed at my hubris.

 

I don’t know why I feel such a compulsion to save other peoples’ mentally ill children as much as my own. Logically, you would think that simply getting Jani through the day, keeping her as present as I can, giving her as much happiness as I can, would be enough. But it isn’t. I set up an online support group for parents of mentally ill children with the express purpose of providing real physical support to each other (a goal I have not managed to achieve because members are spread across the country and the world). I am still in the process of setting up a non-profit organization called The Village Project (named for the saying “It takes a village to raise a child) to provide trained interns to provide hands on assistance to families with mentally ill children. Why am I so compelled to save every mentally ill child in the world? Part of it is probably because I can’t entirely save my own child. I can delay her illness but I cannot stop it entirely. So every other child with a mental disorder becomes an extension of my own, another chance to do battle with the demons deny them a normal life and maybe win once in awhile.

 

Partly it is because I would want you to do the same for me. You saw footage of Susan and I in Westwood, where UCLA is located, handing out money that we didn’t have to homeless people because, as I explained on camera, “That could be my daughter.”

 

And part of it is that I feel terribly alone and terribly frightened and I need you more than you need me. I need you to reassure me that my daughter will survive, that she will be happy, that you can help me make it happen. I can’t do this alone and so I try to rope every other family with a mentally ill child into my world to bolster my confidence that I can keep Jani alive.

 

And this little girl stayed the same. I took no hope from the 20/20 episode. I watched the gray matter of brain scans taken at the NIMH shrink due to the schizophrenia. And I know that that could easily be Jani’s brain (it wasn’t-Jani’s never had a PET scan, only an MRI and CT scan).

 

I don’t want to go into this abyss alone. If I am going to watch my daughter’s brain disappear, I can’t do it alone.

 

I need you to give me the strength to fight back. Because I have done everything. I take Jani to animal shelters all over LA, pet stores, and pay for equine therapy, because animals are one of only two things that bring Jani back to our world. Real animals interest her almost as much as her hallucinations, so I try to surround her with as many real animals as I can find.

 

The other thing that brings Jani back is her Glendale College psychology interns. Although the youngest is more than a decade older than Jani, they are her only flesh and blood friends. And like me, they go into her world. Because I trained them to do that. And she loves them and looks forward to their daily visits (there are more than ten interns and at least one every day). They are Jani’s entourage, constantly engaging Jani with the real world in five hour shifts. They are an extension of Susan and me, for it became clear that we weren’t enough anymore. We lacked the energy to constantly compete with Jani’s hallucinations. So now we have people to relieve us periodically.

 

Animals, her interns, and Susan, myself, and Bodhi are Jani’s only link to our world. Part of the reason I won’t send Jani to residential treatment, even though it would mean Bodhi having both his parents again, is that to do would be disengaging three of Jani’s links to the real world. And partly it is because I am afraid that if I send her away, I will never get her back again. I want as many moments as I can get to see Jani smile.

 

So that was our choice, which 20/20 put very succinctly: to soldier on, even if parts of us crumble away and Bodhi still can’t talk at 27 months (he is now in speech and occupational therapy). We crumble slower now, because the interns are here. Susan and I have set up as good a world as we can for Jani.

 

This life with Jani is our only life. We have no life outside of her. We sink or swim with her. We are happy when she is doing well and we fight despair when she is not. I say not so you will feel sorry for us. It is what we chose. We chose to live with Jani as our sun and us orbiting around her, with our meager gravitational pull working against her massive gravitational pull.  It is far easier to be pulled into her fires than for us to pull her back to our surface. You never think about this, but consider for a moment that the sun is so much larger than all the planets of our solar system combined, yet the massive gravitational forces that keep our planet from spinning out into space don’t also pull us into the furnace. By simple physics, it would make sense that the sun would draw all matter within its gravitational reach into it. Yet it doesn’t. Even stranger yet, comets are pulled relentlessly from the darkest and coldest reaches of our solar system toward the sun, only to be let go again to return to where they came from.

 

So why is it that the sun, that which allows life on our planet, does not suck us into it? Why have we not burned up long ago?

 

The answer is that the sun’s gravity, although stronger than any other body in our solar system, is not the only body with mass. Any object with mass has gravity. And the gravity of the planets pull back against the gravity of the sun.

 

But what about little Mercury? Mercury ranges from 29 million to 44 million miles from the sun. That distance is phenomenal and impossible to comprehend, but Mercury comes close enough that the sun would burn off any atmosphere. Imagine the sunrise on Mercury. It would fill the entire sky from end to end.

 

But 29 million miles is the closest the sun ever gets to eating Mercury and 44 million miles is as far away as it can get.

 

What stops the sun from drawing Mercury in, a planet not much bigger than our moon, and destroying it?

 

We do.

 

Well, not us humans specifically, but Earth. And Venus. And Mars. And Jupiter. And Saturn. And Uranus. And Neptune. And Pluto and Charon.

 

You see, it is the gravitational pull of the remaining planets that keeps Mercury from being sucked in. Every ninety days, Mercury is drawn toward its destruction in the nuclear fires of the sun, only to be pulled back by the rest of the solar system.

 

It takes the rest of the solar system pulling on Mercury to save it.

 

In a way, we are all Mercury. We all depend on the rest of the world pulling us out of the fire. Jani is Mercury and myself, Susan, Bodhi, her interns, the animals, they are the rest of the solar system pulling her out of the fires of complete psychosis. Have I given Bodhi all the attention I gave and continue to give Jani? No. I can’t. In refusing to choose one child over another, I risk both. I know that. I know that Bodhi, for all the love that he gets, has to compete for my attention. I am prepared to answer to him when the time comes. I will tell him that he was Earth to Jani’s Mercury. He helped to pull her from the fire. And I will tell him I would have done the same thing for him. And I still might have to do the same thing for him.  I will save both my children, and yours, or I will die trying.

I am Mercury too. Jani’s illness and my stubbornness have pulled me toward the inferno countless times and every time their have been other planets out there that pulled be back to 44 million miles out, close enough to still feel the heat but able to survive it.

 

Jani needs as many people in her orbit as she can get. And so do we.

 

Gravity is both the strongest and the weakest force in the universe. It is strong enough to hold planets but weak enough to allow us to pick up a child off the floor. It is the only force in the universe that makes no sense.

 

Except love.

 

It, too, is both the strongest and the weakest.

 

[video:

100×100]

Welcome back to Janisjourney.org!

Welcome back! As many of you know, this site has been down since late January, when it crashed. This was entirely my fault. I was impatient for a small change to be made and rather than wait on my tech support, I tried to teach myself. The result is I crashed the site. It has taken more than a month to restore the site. I am grateful to my tech team Ron (who it seems worked nearly around the clock to get this site back up), Andy, and Brian for everything they did to undo my mistake.

Unfortunately, even though the site has been restored, it has not been restored “whole.” The site has been re-uploaded using the original templates from when the site was created back in September 2009. This means that all blog entries (spanning October 16th, 2009 to January 22nd, 2010) and comments since then were lost. I was able to upload those blog entries to the old januaryfirst.org website, where they can still be read, but the comments are gone for good.

I have not written a new blog since January 22nd when the site went down, partly because I am back teaching but mostly because Jani has needed my complete attention. There have been some setbacks and some successes since then and I will fill you in soon. In the meantime, the 20/20 episode featuring Jani, plus two other local girls suffering from schizophrenia/psychosis, will air this Friday, March 12th, at 10pm on ABC. Previews are available here.