I always feel like I lose myself a little bit when Jani goes into the hospital. It is like life stops, which is the opposite of how I would feel about this situation if I wasn’t living it. I would think that the “break” must be welcome, but it isn’t. I feel incomplete at best, lost at worst. I suppose that is one of the reasons why I don’t send Jani to residential care. When Jani is gone, it doesn’t feel like life can begin again. Rather, it feels like it has stopped.
What this means is that I have adapted to life with Jani to the point that it is my normal functioning. Only when Jani is growing do I feel like I am growing. Every time she goes back to UCLA, the staff always tell us to “get some rest” and say things like, “Now you and Susan can actually sleep together” in all the ways that sentence can be understood.
But I never do. I don’t spend the nights with Susan, sleeping in the same bed with her. We are no more a unified family when Jani is gone than when she is present.
I spend a lot of time in her apartment. I use the excuse that I need to write, which is partially true. I have a book deadline now. But that isn’t the whole reason. I just don’t feel comfortable. I feel like my skin is crawling. It is the same feeling that soldiers have described after coming home from a tour of duty in combat, or what bands describe a week home after being on the road for a year or more. They don’t know what to do with themselves.
Humans are remarkably resilient creatures and we very quickly adapt psychologically to long-term stressors. This is flies in the face of the increasingly outdated view that we can become “damaged” by psychological trauma. It isn’t that psychological trauma doesn’t exist. It most certainly does. Rather, it means that what therapists have for decades seen as “damage” is actually functioning defense mechanisms for dealing with that psychological trauma. These defense mechanisms only become “damaging” once we are no longer in the environment that required their development in the first place. Post-Traumatic Stress Disorder occurs because the defense mechanisms needed to survive the trauma are no longer needed but still functioning. When in combat, shutting off your emotions is a good thing. It is the only way to function in an environment where you are under threat all the time. Unfortunately, it becomes a problem when you return from combat and you are still wired to suppress your emotions.
Humans are very tough creatures. Psychological trauma doesn’t break us, particularly if it is slowly loaded on over a period of time. We adapt. If we were as fragile as the social constructionists think, we would have been extinct a long time ago.
It isn’t that I don’t love Susan or Bodhi. Susan is my rock, as shaky as she can be sometimes. I used to feel anger with her because she wasn’t as “strong” emotionally as I was, that I needed to be her rock. But that probably saved my life because I had to keep her going, and that distracted me from my own emotions, which were far too painful to face.
Without Susan, I fall apart. I need her. I need to keep her going because that is only way I can function. Everything I have ever felt since all this began lies just under the surface and as long as I keep working for Jani, or Susan, or Bodhi, or your mentally ill children, then I don’t feel it.
I suppose I am too much of a coward to feel it.
So I am in limbo right now. Not purgatory, just limbo. Waiting until she comes home and the only life I can remember now restarts.
When you are the caretaker of someone who is mentally ill, particularly when it is your child, you have to get a little crazy too. You have to get a little crazy to relate. You have to get a little crazy to survive what would kill most other people.
By the way, don’t get offended by my use of the word “crazy.” Mentally ill adults and children are not crazy. They are mentally ill. Therefore, they cannot hide who they really are. What you see is what you get with them, unlike the rest of us who are “crazy” enough to believe that we are really in control. I use the term “crazy” to describe visually functioning “neuro-typical” people, people like you and me. Our “craziness” is hidden under an elaborate system of defense mechanisms that allow us to conceal what we are feeling.
The mentally ill are the only truly honest people amongst us. They can’t hide. We can.
But maybe that’s just another one of my defense mechanisms.
A good friend of mine who was featured at “The Gathering” in Jani’s Discovery Health Special “Born Schizophrenic” (which airs again this Sunday 6/20 on Discovery Health) has a daughter with a diagnosis of schizophrenia. She (the mother) reached out to me after the very first LA Times story on Jani ran. Every time Jani has gotten some media attention, more and more parents of mentally ill children have contacted me, and I have responded to everyone, although I still haven’t responded to all the parents who emailed me after “Born Schizophrenic” first aired back on May 4th, which I feel guilty about. My email is really backed up and I apologize. Even ignoring all the emails from people suggesting various “miracle cures” (which I do) and the emails offering sympathy and support (which I read but cannot reply to because of sheer volume), it still takes me forever just to get through all the emails from other parents sharing their stories and respond, offering what meager support I can at this point, which is really only the private online support group I set up for parents of mentally ill children, which can be found on my “Resources” page. A few days ago I got an email from a woman with a ten year old son suffering from psychosis. She has been trying to get him into an acute inpatient setting for evaluation, but can’t. She contacted the University of Illinois at Chicago First Psychotic Episode Program, but they don’t take kids under the age of 12 (I love these arbitrary age limits, as if psychosis respects the institution of childhood and won’t appear until adolescence). The intake coordinator there suggested this mother contact “Jani’s Dad.” She had apparently heard about me through internet groups and suggested she look up my blog.
This more than anything I have been through showed me how broken or non-existent care is for mentally ill children in America. The intake coordinator for a major teaching university adolescent psych unit has nothing more to offer this woman than to send her to me.
So what has happened in the nine months since Jani’s episode first aired on Oprah? I am getting asked that a lot since the repeat just aired again. People want to know if anything has changed for us and for Jani, if somebody has stepped forward to “save” us. It shows how much faith we put in television, that surely someone, somewhere, can “fix” this. All it takes is to get the story to enough people.
Thanks to the LA Times, Oprah, 20/20, and Discovery Health, Jani’s story has gone all over the world. I have gotten emails from Japan, the Philippines, India, the United Kingdom, Germany, Ireland, France, and Finland (in fact, there is a Finnish Facebook page dedicated to Jani, as well as another in South Africa). I have gotten emails from the foot of Mount Kilimanjaro in Tanzania. Jani is a global phenomenon. I once received an email from a guru in India telling me that Jani was the reincarnation of the Hindu god Ganesh (because Ganesh in Hindu mythology did battle with rats, and rats are some of Jani’s hallucinations).
Millions of people all over the world know about Jani.
What has happened, to answer your question, is that not much has changed for Jani. She is still who she was, and is only vaguely aware that she has been on TV. She knows she has but it isn’t that important to her.
Oprah, for all of her wonderful qualities, is no match for Calalini. Apparently, the Oprah Winfrey Show doesn’t air in Calalini.
Nearly a year after we shot that episode (in August of 2009), not much has changed for Jani. We never went on Oprah looking for “help.” We went on Oprah to educate. So what is happened is that instead of people coming forward to help us, hundreds of families with mentally ill children have come to us looking for help.
And now even establish hospital psych programs are sending parents of mentally ill kids to us. To a father writing a blog.
That is a bit overwhelming. It’s not that I can’t handle it. We always wanted to use to publicity of Jani’s story to bring about change. This was never just about us. Even before Oprah, even before the LA Times, we knew there were other children suffering from mental illness with families who had no help, no support, no services. That’s why I don’t hang on every email I get telling me that what Jani is not schizophrenia but demonic possession. I’ve gotten thousands of those. It amazes me how many people still believe in what is essentially a Dark Age concept. It is why I don’t respond to emails suggesting various kinds of spiritual healing, be they shamans (New Age) or Christian faith healers. Everybody wants to “cure” Jani, I suppose so they can claim credit. The cynic in me says wouldn’t it be great for them if the girl that went on Oprah was cured of her demons in Jesus’s name by a faith healer. It is their ticket to the big time, even though I have no doubt they really believe what they say.
But Jani is not alone. What about the hundred mentally ill kids in my parent’s support group? What about the kids you see everyday melt down in public? Hell, what about the homeless man raving to himself on a street corner?
Why aren’t you trying to save them with whatever you believe will do the trick?
Even should Jani miraculously get better, you really think I could forget all the other parents I have met, all the other parents who have written to me, and just move on with my life thanking Jesus for saving MY child?
Let me tell you a little something about Jesus. I believe in Jesus. I do. I always have. His message was the only part of the Bible that made sense (I have read the Bible cover to cover three times). Everything else in the Bible, constructed by the Romans at the Council of Nicaea in 325AD, is a combination of myth and history designed to reinforce the authority of the Catholic Church. You notice that there are only four Gospels of Christ in the Bible, the Gospels of Matthew, Mark, Luke, and John. There were Twelve Apostles (or eleven if you believe the betrayal of Christ by Juda-a name also meaning “Jews”). So are we to believe that the other seven Apostles of Christ didn’t write? Only Matthew, Mark, Luke, and John had time to sit down and crank out a Gospel?
The reason that only the Gospels according to Matthew, Mark, Luke, and John made it into the New Testament is because all four focus primarily on the death and “resurrection” of Jesus. At a time with life in Europe was pretty shitty, it helped the Church consolidate power by advertising the concept of being “reborn” into the Afterlife. It helped to maintain social order, because the peasants were less likely to rebel if they were promised streets of gold in the Afterlife. Hell, you are only going to live 35 years anyway. Why not put up with social inequalities in Medieval Europe with a prize like that in the end?
But if we actually look at what the Gospels describe of Jesus’s life, it is easy to get sidetracked by the miracles worked by the Son of God. But what happened to these people that Jesus drove demons out of?
They stayed with him. Or rather, he stayed with them. Jesus spent his life in the service of the downtrodden of society. He spent his life fighting for them, which is eventually what got him killed. The Jewish Priests preyed on the weak and ill, taking what little money they had, which royally pissed Jesus off. He challenged their exploitation of the poor and they in turn went to Pontius Pilate. The last thing Pilate wanted was to lose the support of the priests that helped maintain Roman control. So he, very reluctantly, signed Jesus’s death warrant.
The Romans historically maintained control by incorporating elements of the local religions into their own. Constantine called the Council of Nicaea to consolidate Roman control over a religion that growing faster than the Romans could contain it. Prior to the Council of Nicaea, there were multiple Christian sects and not all of them believed Jesus was divine. The concept of a human as divine is a Roman idea. The Roman Emperors were considered divine, starting with Octavian (later Augustus). So this concept of divinity was adopted by the Catholic Church as a means to maintain continuity between the previously pagan Roman Emperors and the new Christian Rome.
Those that didn’t agree were killed, allowing Constantine to consolidate his control over Christianity.
My point in all this is that if Jesus were alive today, he would be out on the streets, working with the mentally ill who scream obscenities at no one we can see. He might very well be a psychiatrist at Bellvue, working to heal children and adults afflicted with mental illness.
Jesus would not treat one mentally ill child, say Jani for example, and leave the others to their fate.
So if you believe in Jesus, you have to do what Jesus would do and get down in the trenches and work your ass off, even if it means that you get crucified (in the metaphorical sense).
To pray for the deliverance of one from “evil” is not enough. You have to deliver all that suffer, no matter what the cost.
This was never about Jani. Jani is figurehead, because she is a child that so many seem to be able to identify with and connect with. That is her power, her gift, which we had nothing to do with. But all gifts must be used in the service of a greater good because otherwise we are only advancing ourselves and not the human race in general. Which is a problem for all of you because these kids like Jani, Becca, Brenna, Ailish, Mari, Logan, and many, many others are going to have to live in your world. It is like cancer. You can’t kill just part of the tumor. You have to get it all. These kids are in your world. They live amongst you. I guarantee you that somewhere in your neighborhood or at your child’s school, there is at least one mentally ill child. They are torn between our world and another, but their physical form is here, even if their mind isn’t always. You are more surrounded than you know. They may not look like Jani. They may not be cute and blonde and energetic. But they are there and you ignore them at your own peril, and not just because they might be violent. It is mostly just us caregivers, parents and teachers, who get the violence. But for every mentally ill child that ends up on the streets, or in jail, or dead, you don’t know what we lose. Because these children have incredible gifts to offer to world. They are brilliant and creative and, when not psychotic, kind and compassionate. One of them could cure cancer. One of them could figure out how to stop global warming. One of them could figure out how to travel to the stars.
Creativity seems to be a constant in most mentally ill children. Although researchers still don’t know the connection between creativity and schizophrenia, the two appear together far too often to be mere coincidence. Creativity is necessary to the survival of the human species. It has been ever since 50,000 years ago, when the human population was done to approximately 5,000 people, and the grasslands in North Africa were turning to deserts because the Ice Age had changed the global weather patterns, a human figured out that after the rains finally came, they should fill gourds with water and bury them for later when the droughts returned. This simple idea saved the human race, ensuring our survival through the lean years of drought and allowing long distance migration out of Africa.
Schizophrenia survives in the human species and is found in all human cultures (although to different levels) only because it must be attached to something that can increase our chances for survival. If it was only negative, it would have been wiped out. Throughout history, there have always been those who fought to keep the mentally ill alive because they saw value in those who suffered from it.
So the goal is not to “cure” schizophrenia or any other mental illness. There is no cure, at least not yet, and I don’t know that we will ever understand the complexities of the human mind enough to cure it. The goal, my goal, is not to cure Jani but to provide her with the best quality of life her illness will allow. I want her to be happy. I want her to be able to do things she wants to do, like become a vet. And all of that can only happen if I can keep her alive.
And if Jani makes it but all the other mentally ill kids I have met and still will meet die, or spend their life in an institution, or suffer, then my victory for Jani will be an empty one, because I could have done something to help but didn’t.
I acknowledge your good intentions. I don’t think anyone who writes to me offering one or another untested “cure” is a bad person. But I’m not looking for a cure. I am looking for help for Jani, in terms of more opportunities to work with and help take care of animals (because that is her best therapy). But after a year, we’ve pretty much figured out what we need to do to keep Jani going. We are not blindly reaching in the dark anymore.
What I am looking for is not your cures or your suggestions but your time and effort. And not just for Jani, but for other children with mental illness. If you know a family who has a mentally ill or autistic child, offer to help, without judgment. Just tell them you want to help in any way to you can. Maybe you will go get groceries or run errands, because we parents of mentally ill and autistic kids can’t do that. Taking care of our children is a full time job. Maybe you will take the family to a zoo or aquarium. Maybe you will talk to the child and play with them, keeping them engaged for an hour so the parents can take a break.
Don’t judge. Don’t try to figure it out. You can’t figure it out. There is no quick solution. There is only the hard work of trying to make a better life for mentally ill and autistic children.
Oh, I forgot the whole reason why I mentioned my friend whose daughter joined us at “The Gathering” on the Discovery Health Show. Her husband has moved out.
I am hearing this a lot lately. I know a lot of marriages that have broken under the strain of mental illness. I don’t judge it. My marriage nearly broke under the strain of it, until we embraced this life, embraced Jani and everything that comes with her, and totally altered our lives to keep her as part of our family.
He is not biological father of the girl, although he and the girl’s mother did have a child together, a child who is now two. The older girl with schizophrenia thinks it is her fault that her step-father moved out.
I have no idea if he reads my blogs, but if he does, I want him to know I don’t hate him. I don’t judge him. We all want to run away sometimes. It is human. You have undertaken the hardest job on earth, and that is to be a parent to special needs child.
But I also know that in the end, you can’t escape. In the end, it will drag you back. The best piece of advice I can give to parents of mentally ill children is that this is your life now, and it will always be your life. The more you fight to keep the life you had, the harder it will get, and the more painful this will be. Accept it. Embrace it. It won’t kill you. I promise you that. You can and will survive this. You don’t have to do it alone. There are one hundred other families (that I know of) going through exactly the same thing.
Jani won’t give up, and so I won’t give up. And if I don’t give up, maybe I can help you not give up. Maybe I can carry you through the times you need me to carry you and maybe you will eventually do the same for me.
We can do this. We can survive. We can give our children a life of happiness. We can find moments of happiness. This isn’t all hell. That is what I have learned in the past year. This isn’t all hell. This can be the greatest thing you will ever do with your life.
Just don’t give up.
To finish up, let me update you on Jani. Jani is still at UCLA, which should have been clear from the beginning of this blog. That is why I am still here writing it at 2am. The goal of this hospitalization was to see if there was anything that would work better than Thorazine, the dosing of which was creeping up again because Jani was getting impulsive (read my last blog). The doctors wanted to try Saphris again. Saphris is a relatively new anti-psychotic that only became available last August. We had tried it before on an outpatient basis but it had wound Jani up like a stimulant, making her more impulsive and more emotionally unstable. We tried it again, inpatient this time. At first, it seemed to be working. Jani was able to go to school in the hospital for an hour and 45 minutes, something she has never been able to do (we struggle to get through her hour of “home hospital education” that we do at her school after the other kids have gone home). But then Jani started getting “time-outs” all the time, being defiant with the staff, writing all over her walls, tearing up her art projects, things that we haven’t seen since she started the Clozapine last July. She became more aggressive. Usually she loves the hospital and is very compliant with the staff (as she usually is at home as well unless she is having a psychotic episode). All of her toys were locked away because she was throwing them.
When we would visit, she would have a hard time focusing. She would bring me a book and want me to read, but be unable to pay attention after the first page. She also wasn’t responding to my wacky sense of humor, which she shares and is a tell-tale sign that she is not herself.
Today, she bent her leg below the knee up until it rested against her thigh. I commented that it looked painful.
“It does hurt,” she said.
“Then why do it?” I asked, trying gently to push her leg back down.
“I want to hurt myself,” she answered matter-of-factly.
I kept trying to push her leg down. I needed to distract her but I am having a harder time distracting her now, which made me feel very impotent. I hate it when I can’t reach her and bring her back from the psychosis.
Now they are titrating down on the Saphris and trying Tenex. The hope of the doctors had been that they could treat the impulsiveness that was making her run into traffic and lay down in the parking lot with an anti-psychotic. But in the last few days Jani has been asking the staff for Thorazine, telling them she needs it (an improvement from last year is that she will try to tell us when she feels she needs medication). The central question was could we treat the underlying psychosis better than we have been…
…if we can’t, then we will have to use the sedative effects of the medications to slow her down so she cannot act impulsively upon commands from her hallucinations.
The Saphris was an attempt to try the former. It didn’t work, leaving us no choice but to go with the latter. It is a horrible choice to make. Jani did seem more present on the Saphris, but more impulsive. If I have to make a choice between treating her hallucinations sufficiently so she can function in school and sedating her just enough to keep her from impulsively hurting herself, I will choose the latter.
I chose safety over happiness and I will live with that, because it is hard to be happy if you are dead, and Jani can outrun me now. I can’t prevent her from darting into traffic because one of her hallucinations is playing the street. I can’t prevent her from abruptly trying to climb onto the roof or jumping off the balcony. She is getting too fast for me and I am getting too old.
So I will sedate her so that she can’t. She’s not a zombie. Jani has never been a zombie, even on 300 mg of Thorazine. She runs around happily and participates in activities on medication doses that would put most of us into a coma.
Judge me. I don’t care. I would rather have my daughter be a little extra tired and alive than so wound up that she runs out and goes under a car.
I would rather her be alive. Call me selfish, but it is my decision and that is the decision I will make. Hopefully, it won’t always be a choice between those two extremes, but right now it is. I need to keep her alive. I need to get her to adulthood. I am doing this through means other than medication (like animal therapy) but I still need the meds to increase her odds of still being around when she is fourteen.
That is my choice and I am prepared to live with it.
I can’t have her hurting herself.
I can’t have her screaming and hitting at Bodhi simply because he is trying to play with her.
I wrote in old blog that this was like Sophie’s Choice: it felt like helping one child (Jani) hurt the other child (Bodhi). I wrote at the time that I refused to make that choice, even though many have pushed me to make it.
But I won’t. I can’t. I cannot choose one child over another, even though I am not blind to fact that Bodhi shows faster development when Jani is gone, or that he chews on his wrists after Jani yells at him. I am not blind to the fact that he is getting more scared of her.
But what would you do?
It’s a rhetorical question.
I don’t want to hear your answer.
I will not give up on either one and I pray that Bodhi will understand.